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First, let us talk about travelling to Switzerland for the third time in 15 months for Lyme Disease treatment. And I sure as heck don’t mean to sound like a snobby, ungrateful brat. First, travelling when your unwell just absolutely sucks-  for anyone who’s experienced it; you know what I mean. Second, travelling because your seeking medical care and paying $20-50K a visit is a bitter pill to swallow. Literally. Some meds I take once I get home from the clinic taste like they’ve been soaked in Javex and coated in ArmorAll.

 

There also is a hell of a lot to be grateful for in travelling here for the third time.  First is that we’re able to do it. Yes, we owe money because of all of this; but we’ve made it happen and we’ll deal with the debt, eventually. If I never get better or continue to get worse, we will always be a one-income household… but if we invest in my health, I hope with all of my erratically beating heart I’ll make money again one day.  And second, (it appears I am in the mood to list things numerically today) is that Stephen’s family is in Switzerland and we get to spend lots of time with them, especially his 87-year-old grandmother who we’ve stayed with each time.  That is quality time you can’t put a price on, unless we were to bet on our family Skipbo games… because then I’d be making some money! For whatever reason, I tend to be quite lucky at a game of Skipbo, to the point others no longer enjoy playing against me.

 

Back to the real stuff though.  In the days leading up to us travelling I was doing so poorly.  I woke up the morning of our first lag of the journey which was a four-hour car ride and I could move and walk, and I wasn’t in horrible pain.  It still required pain killers every 4-6 hours, but it was manageable.  This was a huge improvement.

 

The next morning, we caught a two-hour flight to Toronto, hung out in the airport lounge for six hours before boarding the eight-hour flight to Zurich, where we landed at 7:20am.  By the time we picked up the rental car and got to Stephen’s grandma’s it was 9:30am and by 10am I was in bed and asleep; and continued to be for the following seven hours. 

 

Upon waking I learnt that family was upstairs here visiting, expecting our arrival.  I drug myself out of bed like the walking-dead, and I probably looked like it too. The tendons around my knees were full of nodules, red and inflamed and my shoulders, arms and hands were in about as good of shape as yesterday’s overhead bin that rattled so hard during takeoff and landing I didn’t know if I should duck and cover my head.  I did the zombie walk upstairs and onto the patio to have something to eat and visit.

 

Three hours later I was asleep again, this time it was a long 12-hour stretch of bottomless sleep.  But waking up Monday was worse than the day before. I couldn’t take the stairs; one leg wouldn’t bend. Just to breathe and expand my rib cage hurt. I was an all around mess.  Over the next two days I spent about an hour each day doing gentle stretches, while wondering if I was already regretting this long trip across the ocean. 

 

Thankfully, after a two nights sleep, I got to the clinic in better shape, or at least I walked in. I had to take the elevators–but I was walking. Everything was still bothering me, but it wasn’t as horrible and I could appreciate that. 

 

Wednesday April 24th – My First Fay of My Third Visit to Paracelsus

 

Back in 2018 during my first visit I cried.   I didn’t mean to, but it happened as I explained to my previous doctor, 

 

“I am terrified of not getting better. I worry I’ll go backwards and I can’t go back to that,”

 

Trip number three also stared with me crying. 

 

These tears were uglier.  No one has ever told me I’m an ugly crier–but I think I am. I hold my breath like I’m ten feet under water when things get hard or when I cry.  I guess I’m concentrating and trying so hard to keep the tears in that I keep my breath in too. Maybe my ego thinks if I can keep it all inside no one will see the pain, fear, sadness or frustration. 

 

Why the ugly tears? 

 

My fears from 2018 came true to some extent.  If you read my last post, you’ll remember that so far 2019 has brought me nothing but pain, exhaustion, and more pain.  Fillet me open and poke burning hot spikes into my body. That is the pain I’m talking about.

 

I ran out of my IV treatment kits from Paracelsus that I’d been doing at home and it shows. Those meds work. You can check back into that last post to read more about it and see a couple of pictures.  The thing with feeling so crappy the last few months and with having a chronic illness is that it takes a toll on you mentally and emotionally.  I’ve been a lot more mopey. Lately I make Eeyore look like the happy, carefree BFF of a bear. I cry easy and feel like I’m in a dark hole with no way to claw myself back some days.

 

And that fear I already mentioned never goes away.  Will this get better?

 

This morning my day started with a doctor appointment. With another new doctor.  Each time I go my doctor is new, and they’ve left the clinic by the time I return again.  There are some real internal politics going on that (in my opinion) affect the patient. I’ve found that the continuation of care isn’t what it should be, when there are new doctors coming and leaving with each new moon.  With that being said my favourite doctor of all the ones I’ve had is still here.  He’s the naturopath at Paracelsus and, aside from Stephen is my lifebuoy (the round thing they toss at a distressed swimmer) while I am here.

 

My new doctor seems good; but truthfully, I haven’t really made my mind up yet. At this point I think I am keeping a distance in case the next moon sweeps her away from the clinic too.  Stephen has had a good first impression from her though, but I also had some bad experiences with doctors during my first visit–and because of that I know I am being critical; but I am also placing my life (and an excessively large sum of money) in their hands with each visit. So yeah, I want them to get it right. I also want to be listened to and heard, and my opinion about my treatment plan needs to be important to them.  I want the ideal doctor-patient relationship; I think we all deserve that. I’ve experienced it with a good handful of doctors in my life, and I don’t see why that should be any different.

 

the apothecary in the patient relaxation room

 

After the usual meet and greet, while telling her my history she moved onto a physical examination. I was ready to head over to the table and lay down, but instead she asked me to scoot my chair closer and lean in to look at her face.  While she studied mine. 

 

It was like having a staring contest and I tried not to smile and laugh while she did the same. Finally, I started to focus on her perfectly manicured eyebrows which only made me feel self conscious about my own. I could only wish mine were that well coiffed.  Next thing I know she is saying she can see liver stress, hormone imbalance, among a half dozen other things just by studying my face. It brought me back to the time I had my palm read; except when that happened I was told about all the (mostly) good things facing me in life. Not the broken and dysfunctional ones. But hey, there was a bright side. She saw no issues with my heart. That’s a plus. Even with a murmur I suppose it looked healthy enough.

 

Afterward she listened to me breathe and the standard stuff you’d expect from a doctor.  Once she finished my favourite doctor came in and joined us, we caught up and summarized the last few months.  He asked me the million-dollar question,

 

“What do you think has happened? What does your gut or intuition tell you has happened in your body?” 

 

My answer was two-fold. First, I’ve gone a long time with no antivirals or anti-bacterials; I think the bacteria have thrived and reproduced.  Second, after working at trying to remove the heavy metals my body could not effectively excrete them after they were bound which caused them to be reabsorbed. 

 

We discussed my treatment plan for the next week and a half.  I won’t be doing any hyperthermia sessions–and I didn’t honestly expect to be doing any.  Last time I wasn’t stable enough and I’m in worse shape this time.  It caused me major issues the first time I did it during my inaugural Paracelsus trip (you can read about it in this post) and we’re avoiding doing more harm than good. The biggest reason we’re avoiding it is because the Bartonella infection is so rampant and uncontrolled right now. 

 

Instead, during this visit we will focus on “getting rid of the critters” as he says it by daily ozone therapy and various infusions.  My schedule has two colonics in it and daily IHHT (interval hypoxie-hyperoxie therapy) and laser light therapy. There were a number of things I asked them to eliminate. I just can’t do this $h!t anymore and filling my day with seven to nine hours of therapies will break me from an emotional standpoint. And lead to further exhaustion.  During this visit there are two new therapies on my schedule though; one I will keep for sure as I think it will be helpful, they simply call it “nose therapy” and the second is “swinging cushion”–yes, they both sound very technologically advanced and intimidating, right?

 

Nose Therapy

They apply a mixture of homeopathic medication into the dose.  It has a local and systemic effect the body. Did you know part of your immune system is inside your nasal cavity? Yep, just another reason not to pick your nose! 


The sinus cavities are massaged as they apply the medication.  This so-called “nose therapy” is recommended for sinusitis, chronic sinus blockages, and intestinal problems.  Most our immune system is actually in the intestine, so now you can see the link between the nose and the gut if you didn’t realize this before. 

 

Swinging Cushion Therapy

 

This is a special cushion, filled with air that you lay on.  This takes pressure off the spinal column, and it is forced into a state of relaxation. The cushion oscillates and any vertebra that are rigid or “stuck” are mobilized while it causes the nearby muscles to relax. 

 

It lasts for about an hour and the information sheet also says,

 

“Through the segmental allocation of the central nervous system, it positively affects the internal organs. Depending on the evaluation by the therapist, they can integrate a massage.  In the concluding phase of treatment, it is important to rest for 10 minutes to support the relaxation of the muscular system over the nervous system,”

 

Swinging cushion therapy is indicated for: balance of the autonomic nervous system, deep relaxation, back complaints and/or tension, polymyalgia, scoliosis, postural problems, fibromyalgia, and blockages/rigid vertebra.

 

Am I looking forward to this one?

You freaking bet I am. A fancy hammock and a massage?

 

Yes, please!

 

At the end of my appointment with the new doctor she did neural therapy. I did this back in January 2018, and nearly every day she stabbed with needles all over the place.  It seems like neural therapy will be a big part of my daily doctor appointments again. 

 

Today she focused on a few spots: above and in-between my eyes, the scar tissue from removing my tonsils and inside the sinus cavities, which is accessed by going inside your mouth and you can hear the solution being injected, on one side I even felt it moving under my eye. 

 

While she did the first injections over my eyes they naturally watered.  But that acted as a catalyst and a cue for me to just cry.  For no reason.  Cue the ugly tears because they were coming despite anything I tried to do to stop it.

 

The doctor was nice about it; she told me it was ok–that I needed to let the years of frustrations out.  She kept reminding me to breathe, because I hold my breath when I cry and it is apparently obvious. Stephen also kept reminding me to breathe, and then I realized the doctor was tapping me on the top of my head, which I think was meant as a distraction? Either way… it worked, as I began to wondered if she intended to tap me, or was if she was trying to comforting me.

 

 

I did IHHT next and then an ozone infusion, which has to be in my arm still–we can’t use my port for that, so there will be daily pokes into my veins. In the afternoon we met with the patient coordinator which was really nothing; I am familiar with the Clinic enough I didn’t need instruction or reminders.  She told us that there would be changes coming this year, but not when.  Dr. Rau is coming back to the Clinic and bringing with him a handful of staff which means some people are being forced out of Paracelsus. She didn’t say who, except that she was one of them.

 

My last appointment was an infusion, and I did a phosphatidylcholine infusion for the first time.

 

This is an explanation adapted from their handout:

 

Cell membranes are (in part) made of phosopholipids and are typically called as phospholipid bi-layers.

 

credit: By derivative work: Dhatfield (talk)Cell_membrane_detailed_diagram.svg: LadyofHats Mariana Ruiz – Cell_membrane_detailed_diagram.svg, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=4211597

 

 

Any damage to cell membranes can lead to damage of organs.  When the membranes are damaged, they can still be repaired, even at the level of gene repair.  Cellular and subcellular membranes depend on the strength of the phospholipid bi-layers.

 

If there is damage to those bi-layers, cellular toxins can penetrate the cell and cause serious organ and tissue damage. 

 

Phospolipids, especially in the form of phosphatidylcholine are essential for regenerating and renewing cell membranes. Choline is a precursor to acetylcholine, which is an important neurotransmitter that plays a key role in muscle control, memory and many other functions.  Interesting, right?  I’ve also blogged a little about choline and included recipes in an older post; you can check it out here.

 

The therapy used at Paracelsus is delivered intravenously; it is non-toxic, non-embryo-toxic, non-carcinogenic and as a body-identical substance, it is well tolerated. 

 

Phosolipids can remove the fatty deposits and calcifications in the arteries and improve blood circulation.  It also increases the body’s ability to detoxify.  

 

Indications for these infusions are:  liver protection and cleansing, high cholesterol, high blood pressure, anti-atherosclerotic affect, brain performance in old age, protection against alzheimers, learning disabilities, growth disorders, lack of concentration, decreased memory, fatty liver, lipid metabolism disorders, disrupted amino acid metabolism, disrupted carnitine metabolism, reduced renewal of red blood cells, inflammation, tumors, prevention of thrombosis, balancing the autonomic nervous system, and after cardiac bypass or stent placement. 

 

 

Starting the infusion was a bit of a process.  The nurse attempted to access my port, when she put the needle in and tried to get blood return nothing came.  Ever since our disastrous first attempt at accessing my port when it was first put it (you can check out this post and read all about it) it has been working fine, albeit sometimes slow.  When she wasn’t able to get it to work today I wasn’t too worried, I thought maybe she put the needle too far off from the centre. After the failed attempt she pulled it out to try again and had me sit up straight for the second try. There was still no blood return.  

 

Stephen got up to inspect her work this time, I was ready to tell him to get the supplies out of my bag and just do it himself; it is a strange world when you trust your carpenter-husband to do a RN’s job better than an RN.  Before we left to Switzerland my last infusion at home was being really temperamental. I noticed the flow rate was directly linked to the position I was in. If I shrugged my shoulders, it would run faster.  I decided before she pulled the needle again I would try it. Guess what? It worked.

 

From there I settled back, I had to shrug a few times to get it going, but it worked.

 

During the first bit of the IV it seemed like my head gained a couple pounds and it became heavy; I thought maybe I would feel a bit worse after this infusion, but a couple hours later my hand started to move better, I still can’t make a fist but I can curl my fingers in closer. I could also get up and down the stairs with much less an issue than I have for the last week or so. 

 

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Thursday April 25th – Day Two

 

My day started with darkfield microscopy (live blood analysis) and I can tell you it looked worse than it did during my last visit.  My favourite doctor was supposed to do the procedure, but I had gotten an email the night before telling me another (also new to me) doctor would do it instead. 

 

At first I was bummed out, being passed around to yet another doctor; but this guy quickly made his way to my “favourite list” and I was glad to have him.  It turns out my original doctor had an accident and broke his leg.  I don’t imagine I will see him for the rest of my visit. 

 

When we looked at my blood, there was a lot of clumping of the RBCs and the WBCs were behaving poorly and near the point of lysis (the disintegration of a cell by rupture of the cell wall or membrane).  He could see that the cell membranes were weak, but the phosphatidylcholine infusions work to repair this. 

 

He also told us there were fibrin nests, undigested proteins, which shows that the membrane of my intestine is still hyper-permeable (AKA Leaky Gut Syndrome) which is still not surprising given the long-term antibiotics I was taking in 2016-2017.  These things take a while to heal, and there are other factors at play that also contribute to the damage of the intestinal lining.  For more info about this you can refer back to a post from my first trip to Paracelsus, and this one from my second visit. 

 

During my first visit there was bacteria visible in the blood sample, but not during the second. This time we saw bacteria again, in two different forms which isn’t surprising.  Especially given I’ve been getting worse and my time between my second and current visit didn’t include much for antibacterials or virals.

 

My blood is still also too acidic, and he could see signs of the heavy metal toxicity as well.  

 

Based on the overall results they’ve added IV artemisinin to my schedule last week.  Artemisinin is a plant derivative that is used as an anti-malarial.

 

Afterwards I did an ozone infusion, and had my lab work done, a session of IHHT and then nose therapy.  Nose therapy wasn’t too bad, they mix eight different homeopathic medications together and apply about 20 drops into each nostril then massage the sinus cavities.  They repeated this about seven or eight times.  I didn’t ask what the eight different homeopathic meds were, even though I wanted to know a little more about what they were dropping into my nose.

 

Last for the day was a curcumin (turmeric) infusion.  This was a first time for me as they didn’t offer it during my last two visits.  It is as yellow as anyone would expect it to be and it actually stained the catheter of my port-a-cath afterwards.  My port was being incredibly temperamental today; if I moved slightly in the wrong way, it would stop flowing.  This was made more difficult by the fact they’re using pumps now with the IVs; if the fluid stops dripping an alarm goes off on the pump and they have to come reset it.  I finally asked if they could just do a gravity drip instead; I kept an eye on it and kept my arms and shoulders positioned so it kept running.

 

 

Overall, today I am feeling a little better than yesterday. My knees hurt less and I can curl my fingers into a fist a bit better too, I still can’t actually make a fist yet though; hopefully I won’t need to practice any kind of self defense, I would end up hurting myself more than anyone else. 

 

Friday April 26th – Day Three

 

My day started with ozone, if you didn’t notice the pattern it is being done daily.  We’re trying to oxygenate my body as much as possible.  This helps in a lot of ways, but our main goal with it is to help kill the bartonella infection.  If you don’t know or remember what ozone is, you can refer back to this blog post.

 

Next I had an IHHT session again, followed by a colonic.  If you’re new to my blog, you can go back to my posts from the first half of 2018 where I talk in a lot more detail about all the different therapies and what they do.  I’ll leave links at the bottom of this post to all the previous Paracelsus-related blogs.

 

We met with the doctor after lunch, she’s starting to grow on me but she still doesn’t “talk out loud” like the other two doctors I like.  When they “talk out loud” you get a good understanding of the thoughts..

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Writing this post brings back memories of my days (which were now long ago enough I don’t want to tell you how many years its been) of being in University; lap top balanced on my knee while I work to meet a deadline.  To be fair, I actually finished assignments ahead of time. I’m not a procrastinator. Nothing has changed in that sense, but my health – or lately – lack-there-of, has indeed changed and forces me to put off anything that is non-essential.

I wanted to publish this post weeks ago.  The main goal was to post it before I go back to Switzerland to my Clinic.



Where am I writing this right now?



An airport lounge in the Toronto airport. Sipping on a glass of wine that I will ultimately regret very soon.  Lyme Disease and alcohol really don’t mix well… but when its free? And you have a 6 hour layover? You just do it. Live a little now, pay for it later. Sometimes you just have to pretend to be “normal”.

Those of you who know me probably remember that it takes me forever and a day to write a blog post.  When I started this one it was at the beginning of March and by the time I’m publishing it, it will be somewhere around April 20th. 

So when I start the next paragraph with “yesterday” I am now actually referring to a day way back-somewhere around 40 days ago. 

Yesterday (March 7th) brought an anniversary that each year I remember without needing to see it on a calendar. Well, that isn’t entirely true. Lately I don’t know what month it is, let alone the date – so I only remember this anniversary if I have taken a glimpse at the calendar to remind myself of what month we’re in. It is always in my head, and I do hope that one day I’ll forget about it and leave my own personal journey with Lyme Disease in the past. 

On March 7, 2016 I had a phone call from my doctor. The results from my bloodwork at Igenex came back.  She told me that the report was really long, and read the results.  I tested positive, by the Igenex and CDC requirements for Lyme Disease. I also tested positive for Bartonella, and later when I saw my first LLMD he made a clinical diagnosis of Babesia.  It was a triple threat.

You could say that my Lyme journey officially began in 2016 when we finally had the answer, but really – it started within weeks after that bite back in April 2014.  I was bitten on the back of my shoulder, near the armpit (they like warm places, and this is one area you should be sure to check). My husband saw it and sent me to the Clinic where I saw a nurse practitioner and she thought it was a spider bite.  I wasn’t given any treatment, other than ointment.  I knew diddly-squat about Lyme Disease or that my life was going to change.

It was a matter of weeks and I became so exhausted and started to get a sore throat – the kind of sore that keeps you from sleeping at night because it feels like your swallowing knives. My glands were swelling off and on.  I thought I was just fighting a cold. For months. In that time my joints started to hurt. Then around four months after that bite I woke up and couldn’t lift my arm. Another month went by and more joints were affected and then the other arm as well. 

From there it was a hurricane of weird symptoms that came without rhyme or reason. A lot fit into the rheumatology category, so that was the first of the specialists I saw.

Fast forward to summer 2015 when I started to have chest pain and learnt that I developed a heart murmur. By this point all of my joints were affected.  Some days my TMJ was in so horrible I had to resort to liquid diets; smoothies that were jam packed and nutrient dense because I couldn’t open my mouth to take a bite of solid food.  I actually spent Christmas Day 2015 alone, my family was in Arizona and my husband drove to the city to pick up his parents from the hospital.  I had a couple invites to dinner, but my jaw was locked shut.  I did what any normal 20-something would do and supplemented Christmas dinner with mimosas.  That is “normal”, right?

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I was in extreme pain. I became so weak and immobilized that I couldn’t get from the couch to bed without being carried. I couldn’t lift my own head to swallow medication. My husband brushed my teeth.  Then one evening, if my memory is correct it was around the 20th of January, 2016 I tried to stand up from the couch and my legs would not move. No matter how much I willed them to shuffle, slide – anything. They weren’t responding. 

We saw countless doctors, both locally in Northern Ontario and Manitoba – and we also travelled to the Mayo Clinic, desperate for answers.  None came.  In February 2016 I was hospitalized for four or five days while they did more tests, nothing came back that helped with a diagnosis.  I had a bone marrow biopsy, and still nothing.  Then Mach 7th rolled around and we had an answer. Finally.

How did we find Igenex and send a blood sample to them?

We were grasping at straws by this point.

I had so many tests: CT scans, MRIs, echocardiograms, EKGs, xrays, bone scans, the list goes on. Plus, I’d been tested locally for Lyme Disease, and it was negative. At that time, we hadn’t done research on Lyme Disease and I didn’t know that the testing we use in Canada can often give a false negative. 

The night we got home from the Mayo Clinic my husband was searching on Google and he found a few stories from other people’s blogs about Lyme Disease. It sounded too familiar. We rented the documentary, Under Our Skin, from iTunes and while I watched it tears fell down my cheeks.  The documentary followed a few people, and watching one of the girls was like looking in the mirror. Pieces of the puzzle started dropping down on us like a hail storm. This made sense, it had to be it, especially when nothing else was diagnosed over the last two years.

More reading led us to Igenex. We figured at this point it couldn’t hurt to try, I’d had enough blood draws – what was one more?

At this point I learnt about the Horowitz Questionnaire and I scored ridiculously high.  While I waited for the lab results I starting researching different LLMDs, booked an appointment and then the journey really began.

I had to stabilize a bit before starting IV antibiotic treatment in June 2016. It took three months to reach a proper dose of lyrica and lamictal to help with the burning neurological pain I had.  The course of IV antibiotics was estimated to take 9 months.  Soon that doubled, and I was into my 18th month of treatment-at that point I had enough. I decided to pull the plug. Literally. I asked to be referred to a local surgeon to remove the central line that was put in while I was in the United States. 

There were a handful of setbacks throughout my IV antibiotic treatment. I’d get ahead. Then fall back. It was a never ending up and down cycle that fluctuated like the stock market.


After I called it quit with IV antibiotics (you can read about it here), I took a leap of faith and went to a Functional Medicine clinic in Switzerland.  That experience itself was full of ups and downs, and I documented the whole thing in a series of blog posts:

My Assessment at Paracelsus, Week One of Treatment, Week Two- Part One, Week Two-Part Two + Whole Body Hyperthermia, Week Three- Part One, Week Three-Part Two, Fourth and Final Week of Treatment

Although my first experience with a couple doctors at the clinic didn’t meet my expectations, I found myself getting to know and trust one of their other doctors who continued to stick with me through the following months, by regular email and phone contact.  Eight months after my first visit we were flying back again. I also blogged about my second visit to Paracelsus in these posts:

My Decision To Go Back to Paracelsus, My Second Trip-Part One, My Second Trip-Part Two

If you read my last  blog about my experience with having a port-a-cath placed you might remember me telling you that I went a couple of months without infusions. My veins continuously collapsed.  Stick a needle in my arm and they’d deflate and disappear. By the time I restarted infusions in January my body was going through what seemed to be a never ending flare up. 

To summarize January and February 2019 all I need to say is that it was hideous and horrible. 

I was lucky to have two days out of the week where I wasn’t overwhelmed entirely by symptoms. I had some of the worst joint pain yet, even the slightest touch on my knees or elbows sent fire lacing through my veins. A new, strange symptom came up… and I still don’t know exactly what it is – whether its tendons or we should just chalk it up to soft tissue – I get these raised, hardened areas all around my ankles and behind my knees. They also turn really red and cause a lot of pain, plus restrict fluid and blood flow. 

One morning, after putting off washing my hair for a little too long I knew I couldn’t avoid it any longer. This is a fairly normal pattern.  I wash my hair on days when my port is not accessed, I could still tip my head over the tub to wash it – but it is bit of a hassle.  I basically have to decide based on how I’m doing if, and when my hair is going to get washed… and please, don’t get too grossed out. My hair still gets cleaned every 4-6 days – even if that means asking for help.

Anyway, one morning I decided I needed to get the whole hair situation out of the way, so I rallied up all my energy to wash, dry and style it.  Yes. Even style it.  My whole life there has always been something about my hair; I could be wearing sweats and have no make up on (which is also normal) – but I always feel better when my hair looks half-decent.  This is a trait I no doubt inherited from my great gram, who had her hair done weekly up until she passed away at 90.  Whenever she was admitted into the hospital, she’d always ask us how her hair looked, and we’d always be making touch ups with a curling iron for her.  I suppose if I am lucky enough to have another 60 years on this planet, even if I’m not always lucid like her – I’ll still care about my hair.

Let’s go back to this story about washing my hair.  As I am getting to the point of plugging in the iron and styling it, all while ignoring the pain in my ankles and feet I finally rolled my pant legs up and looked down. I knew I pushed myself way too far.  My legs were mottled. If you aren’t sure what that means, google it.

No flipping wonder they hurt. I got myself back into bed and raised the foot of my bed up as high as it could go, with an extra pillow stacked under my legs for more height.  It took a few hours to recover from this to the point that I could walk to the kitchen and get myself food or a drink.  If I stood for longer than five minutes it would start all over again.  This one symptom in particular has been happening at least four to five days a week.

Then there was the other “normal” stuff that makes a person feel miserable, I was having a lot of issues with the tendons of my shoulders again, making it impossible to change into my PJs on my own. I have also started to develop nodules on my tendons in my forearms on a regular basis.  These cause pretty extreme issues with mobility and pain all the way down to my fingers.  I had instances of synovitis (inflammation of the synovial membrane, which is painful, especially when the joint is moved) in the past but lately they seem to be very regular. 

To put the cherry on top, this happens predominantly in my right hand – and I am right handed.  Imagine trying to hold a pen and write when you can barely hold a pen.

It is pretty normal that when I’m not doing and five pm rolls around I tend to be in some extreme pain of the neurological sort. I do take Lyrica and Lamictal for neurological pain, and overall it works – except during the flares. If you’ve never experienced it, I hope you never have to.  It feels like fire and sharp pieces of glass are flowing through your body – burning and scraping it from the inside. It feels like you’ve rubbed your skin raw with sandpaper, and even the blanket laying on top of you seems to hurt. Getting a good night sleep is impossible like this, which propels the symptoms to get worse when you’re not getting restorative sleep.

So – basically, things were really awful in January and February. This also brought about a big shift in my mood that I hadn’t experienced in these past four years.  I was extremely miserable. Mentally and emotionally, I couldn’t handle these bad days anymore and things got dark. 



It isn’t exactly easy to tell the world this part of my story – but I think it is important. 

All of my blog posts tend to have a silver lining and mix of humour to them, simply because that is my personality. I’m fairly easy going, light-hearted and shamelessly sarcastic.

 

But it is changing.  This change is normal for a lot of people who are suffering from a chronic illness over a long period of time.  The reason I am sharing this part of my story is for other people battling this disease who are reading my blog.  A lot of what we see on social media can make it look like everyone, even those with a chronic illness have their $h!+ together 24/7 but it is rarely true. And it is a-ok to be honest about that. And it is more than okay to seek help for it too.

I have been attending our local mental health program since the summer of 2017 and I am so glad I finally called and referred myself to a counsellor. But in 2019 things changed, my counsellor took on a new role within the program and I was moved to someone else. I have to say that I am lucky to live in a small town and I already knew a bit about my new counsellor and I knew we’d be a good fit.  Finding someone you can talk to and feel comfortable with isn’t always easy – but I have to tell you, when it is in a setting where the person is trained and educated for this, it is actually easy to open up.  If I were to try to sit and have the conversations we do with a stranger on the street I would fear their judgement, pity, and all of those other things we might expect when we unload all of that mental and emotional baggage.

Talking to someone professionally is different

1) they are usually in this job because they’ve chosen to this career path because they want to help people through their struggles,

2) they’re unbiased and nonjudgmental,

3) you don’t have to feel guilty talking about yourself, that is the purpose of your time with them

At my final appointment with my last counsellor I wanted something to work on outside of my appointments.  Talking while I was there was great and helpful, but I felt like I was slipping into a darker place.  I was losing parts of myself and shadows were slowly creeping in.  She gave me a “Chronic Illness and Depression” workbook and I thought it wouldn’t apply to me.  Was I depressed? Nah. I really doubted it.  That booklet sat around for a solid six weeks or more before I cracked it open on one of those days I was laying in bed with my feet raised up. 

It opened a can of worms. That workbook was a slap in the face. But it was a good thing, and I am so glad I finally gave it a chance. It has been a couple months now that I’ve been clawing my way through this workbook and I do think it, with the help of my counsellor has been incredibly helpful.

We’ve come up with a new strategy that really works for me. On those days where I feel emotionally and physically horrible I have some obsessive, intrusive negative thoughts.  I cling onto negative things, I feel like I want to be angry. I want to verbally assault someone. Yes, I know that isn’t going to solve my problems, and I have enough self awareness not to take it out on anyone else. 

What is this strategy?

I write down my thoughts, I fill a page with all the ramblings of my brain. Next I look at all of those thoughts and I underline the undisputable facts. After you do this you’ll often see that you can fill an entire page of thoughts but very few of those things are facts.  Why I am worrying about the “what ifs”? We’re also identifying my “catch” words and I am making an effort to replace them with a more positive self-talk.

I’ve found the last two weeks that my mood has been better, even when I am in so much pain I actually cry. 

Crying because it is that intolerable is not normal for me.  I can usually work my way through it, but it has been so bad lately that I cry. There are days I wonder if I can do this anymore. I wonder if I am ready to just give up. I don’t want to keep seeing doctors. I don’t want to travel and spend our money on doctor appointments and medicine. When I have day after day of horrible pain and I’m unable to do the simplest things for myself, my mind goes back to where it was before my diagnosis; when it is just so bloody hard that I would totally accept falling asleep one night and this disease just taking me. At least it wouldn’t hurt so much anymore.

But that isn’t what I want. I want my life back. I know even on those bad days that it just isn’t in me to give up. I’m not ready to give up. Not yet. Probably not ever.

Why have I been so sick again these past four months?

I ran out of my infusions sets.  These make the world of difference for me.  I tried to order them from my clinic in Switzerland to find out that they will no longer ship to Canada because of “issues with customs”.  Instead, my husband’s cousin (who lives in Switzerland) picked up my IV sets and mailed them to me. They’ve been sitting at Canadian Customs for five weeks and three days while I get worse by the day.

Is the issue with the medications in those IV sets? I highly doubt it. I’ve had them mailed a handful of times in 2018 without any issue. Instead, I think customs is just backed up and slow. We’ve gone so far as to meet with our local MP (member of Parliament) to seek his assistance, but so far those meds still haven’t moved. 

This is the reason I am going back to Switzerland. I’ve regressed a lot without meds and it appears to be the only way I am going to access them.

Our goal for this visit according to my favourite doctor is

“The crux of your care is focused on removing “critters.”  Naturally, your energy will rebound healthfully if you are not mentally and physically plagued by ailments. Hence, critter extermination”

Paracelsus now offers extreme hyperthermia. Induced fevers that surpass 41C – which I still haven’t had the opportunity to ask how you can avoid brain damage and strokes at this temperature, but I know this particular treatment has been around for years, so clearly they’ve figured it out.  To do this type of hyperthermia you’re completely knocked out, just like having surgery.  My first day at the Clinic is in four days, so soon we’ll see what the plan is and like usual, I will keep a journal and share it here with you – should you find it interesting enough to read my painfully long blog posts.

If you’ve made it this far, thanks for sticking with me.

The post Lyme Disease – Five Years Later appeared first on Soul Nutrition Consulting.

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A major part of my home treatment plan for Lyme Disease is weekly IV infusions. I’ve been doing these since I got home from Paracelsus in early 2018, but after a few months my veins started collapsing. Every time. At this point we had discussed alternatives; a PICC line, central line or port-a-cath. We decided on the later and they sent a referral to have a surgery to insert a port-a-cath, and I tried to be patient as we waited to hear.

When I had IV antibiotics in 2016-2017 my doctor at the time referred me to have a central line put in. A central line is like a port in the sense that both are in your chest, and a PICC line is different because it is in your arm. All of these have catheters that lead to main arteries close to the heart, and they allow IV medications to be easily administered rather than having a needle inserted into your hand like most people would during short-term hospital stays.  

When I had IV antibiotics in 2016-2017 my doctor at the time referred me to have a central line put in. A central line is like a port in the sense that both are in your chest, and a PICC line is different because it is in your arm. All of these have catheters that lead to main arteries close to the heart, and they allow IV medications to be easily administered rather than having a needle inserted into your hand like most people would during short-term hospital stays. 

To help better understand and get a visual of what a port is I’ve added these pictures:

Why did we choose a port instead of the other options? 

For freedom.

When I had a central line, I couldn’t get my chest wet, which meant not being able to take normal showers, wash my hair standing up and no swimming. I always had to be careful with the central line not to get the catheter caught on my shirts when I changed my clothing. The “tail” end of the central line will always stick out of your chest. With a port-a-cath you can “disconnect” when you’re not using it.

How do you disconnect from a port? 

You remove the needle.  The port is implanted under my skin, and when I need to administer my meds, we use a special needle called a “gripper needle”, it is bigger in diameter and ¾ of an inch long, and that whole thing goes into my skin. The needle gets poked through the skin and into the chamber of the port, then secured with a dressing. It can stay in for up to seven days before you need to change the needle, or you can poke yourself and access the port each time you use it. When you’ve “disconnected” from the port, you are free; you can swim and shower and do any normal activities. 

Accessing a port-a-cath

Removing the needle

Having Surgery to Place the Port  

Surgery was scheduled for December 7th. My nerves weren’t as bad as they might have been, having done something similar with the central line I understood more this time around. I was also coming from the stand-point of doing whatever it takes to get my IV medications into me. These meds make a huge difference and not getting them meant I wasn’t progressing or feeling well. 

On the day of the surgery we arrived at the hospital and it reminded me why living in a small town is great, the nursing staff remembered me coming in to have my central line removed a year prior and I got some “welcome back!” encouragement which was nice… I’ve always left our local hospital so happy with the nursing staff I’ve encountered that I can’t miss giving a small shout-out to them. It wouldn’t be fair to leave the doctors out either.  While I was in pre-op, the anesthesiologist came to do his assessment and we chatted about the different books we’d been reading. I had a copy of one of the Mortal Instruments books laying beside me and I’m slightly embarrassed to admit that I’m older than its intended “YA” audience—it’s a great book series.  

Once the OR was ready, they wheeled me in and everyone got set up for surgery. It moved quick, and I was asleep before I knew it. When I woke up after surgery in the recovery room my chest hurt, still confused I asked the nurse 


“Did they do the surgery yet? My chest hurts.” 


She told me I was out of surgery, gave me some Tylenol and then said there were some complications and that the line was “too deep” but they fixed it. I wasn’t entirely sure what that meant but I closed my eyes again and slept off the anesthetic.

post-op
After the Port Surgery  

A few people told me they were in a lot of pain after having a port put in. Comparing it to having a central line put in, I didn’t find this much different. I took Tylenol every few hours for about a day after surgery and that was it. A cold compress helps too.

If you want to read more about my central line, you can check out this post from the second month of having the central line – and this other post about my decision to remove it (and the issues we ran into trying to remove it).

Using My Port for the First Time

My nerves were the most frazzled for accessing the port, not the surgery itself. I knew the needle would be big and likely hurt to put in. At this point I’ll share a detailed video of how a port is accessed so that this all makes more sense. 

It all looks so simple in this video, but my reality turned out to be different. My home care nurse came one week after surgery to access the port. We were only semisuccessful, and my stomach was in a knot for hours from me being so nervous during the whole ordeal. 

The gripper needle burns like a mother F’er going in. Sorry for the “language” but it’s warranted. Often people will use Emla cream to numb their skin before accessing their port. My bandages were still on when my nurse came, so after we took them off there was no time to wait for the Emla cream to do its job. I was going at it cold turkey.

In a perfect world once the needle goes in you should be able to get blood return (blood should come back into the tube) quickly and easily. We got none. I silently panicked that something went wrong, especially after being told it was originally “too deep”. My head went to the worst-case scenario.  I was so overwhelmed I already thought about what I would do if this port didn’t work. Would I go through surgery again? Would I throw in the towel? Did I want this thing out of my body? 

At this point I wanted to get angry or cry, and just stop. Stop everything. Stop seeing doctors, stop taking medication. I just wanted to stop. 

My nurse said some ports can be finicky, so in those cases if you move the needle out a tiny bit and then try again, or rotate it it’ll work. We tried that. Still no luck. 

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They delivered only two gripper needles to the house, so we tried again and stabbed it in. Still no blood return. My nurse was teaching Stephen at the same time, so she had him pull it out a little so he would get used to it… but the chamber under my skin that the needle goes into is very thick plastic, so it’s tough to pierce into it and to move it out. He accidentally pulled the needle out.  

During the attempt with the second needle my nurse sympathetically said,

 
“Nothing can ever be simple for you Sara,”  

My reply was, 


“That’s what my mom has been saying my whole life.”

Because she is such a great nurse and prepared for anything, she had an extra needle with her. I half heartedly agreed to try a third time. Still cursing to myself, I started to really worry the port was still too deep, and that was why it wouldn’t work. We moved onto trying with the third needle and they worked as a team, trying to move and rotate it until we got blood return. No such luck. 

However, something happened–this is why I said “semi-successful”. Stephen pushed down onto the needle, and with that pressure we finally got blood return. When he lifted his hand off, and they tried to flush it back into me, it didn’t feel right. I couldn’t exactly explain it, but it felt like we were inflating the port like a balloon. After experimenting, we learnt that only with that extra pressure from his hand that the port worked. My nurse could feel a difference in how it flushed with and without putting pressure on it. 

So…. what do we do about it? 

My nurse figured that I probably just need a longer needle. We tried with 3/4 inch long needles and maybe it wasn’t long enough. They make 1 inch needles, so she thought this would solve the problem.  We ran into another hiccup from all of this: after working at the port we had to put a gauze and dressing back on because the incision opened a little. 

What is the bright side in all of this? It is a straight and clean looking incision, so I’m thanking the surgeons for a nice straight cut at least.

The plan is to try again next week, but my nurse asked my doctor to contact our local Oncology Unit to see if the nurses there would access it this time in case there are any issues. Our local oncology nurses see ports a lot more than my home care nurse so she thought it would be better for our next attempt to do it there. 

The Following Week 

Four days later I was laying in bed and reached across my body to grab a cup of tea and something hurt in my chest around where the port was. It felt like a stinging or scraping sensation and it was strong enough I stopped moving dead in my tracks and took a few deep breaths.  Kind of like when you stub your toe really hard.

Given my experience with a central line before, this struck me as a strange sensation. I felt nothing like that with my central line. There was an adjustment period when it ached, but never hurt. 

The next day as I showered I noticed my incision was leaking. The small part of the incision that didn’t close was about 1/8 of an inch long and it looked like diluted blood coming out at a steady rate, part of me thought it wasn’t a big deal and it didn’t look infected, but I sent a couple pictures to a friend who is a nurse and she said to go to the hospital. While I spent an hour debating if I would go to the ER or not, the scraping sensation came back and this time it lasted longer.

I went to the hospital and after a few hours in the ER the doctor took a couple swabs to send away for cultures just to be safe. He also put a dressing back on the incision to make sure it stayed clean. While I was waiting in the ER, I had a call from the Oncology Department to come first thing the next morning. 

Our Second Attempt to Access My Port 

I put Emla cream on as soon as I dried off from my shower. I rubbed it in well and did it every 15 minutes before my appointment. When I got to the Oncology Unit, my first impression was that the nurses were so friendly that my nervousness melted away a little. 

I explained about our first attempt with the port, and why my home care nurse thought I might need a 1-inch needle. After feeling the port they said it was close to the surface and wasn’t tilted or angled. The nurse prepped everything while I asked more questions, and then they asked if I wanted to see an actual port. Of course I did! They showed me the practice dummy and pulled the port out of it so I could see how big the thing actually is, which was bigger than I expected. I also learnt when it was placed “too deep” that it couldn’t mean too deep into my chest cavity, or else they would have gone into my ribs. There wasn’t a lot of room to place a device under my skin because I’m flat chested, so there isn’t a lot of extra tissue to work with. We concluded that “too deep” meant that the length of the catheter was too deep (too far) into the artery.   

Once the nurse was ready with the needle to puncture through my skin and into the port, she mentioned she could see where the incision had opened and leaked, but it looked clean and not infected. As she readied me for the needle, she said she hoped the Emla cream worked for me, and as the needle went in I flinched. It was impossible not to notice, and she said “oh, you felt it!” which prompted me to ask, bewilderingly, 


“Is it possible not to feel this?”  

The answer is yes. You need to use Emla cream correctly, which I had not been doing. You need to put a big glob over the area and you don’t rub it in.  Instead, cover the cream with a dressing and allow it to sit for 30-60 minutes.  

After the needle was in she checked for blood return and it came. Relieved, I thought we were in the clear and I could get back on track and use the port, but when she went to flush it, I saw her face and I knew it wasn’t right.   Fluids were bubbling out of the incision when she flushed fluid into the port, all I could do is laugh and say, 


“That shouldn’t happen, should it?” 

From this point she said she would remove the needle, there was clearly an issue. Our next step was to call the surgeon, and lucky for me both surgeons worked that day. When the nurse removed the needle she put more Emla cream on for me, expecting the surgeon might want to access it again.  They also sent me for an x-ray in the meantime so they could see what was going on.  

Next the surgeon came down to see me and as the nurse expected, she wanted to access the port. The Elma cream worked! I didn’t feel the pain, just the pressure of them pushing the needle in. At this point the surgeon was checking it out, getting return and flushing. As she was doing it I felt a suctioning feeling inside my chest where the port is and even worse: it made squeaking noises. This was the icing on the cake, and I was a becoming grossed out by everything. I turned to look at my husband and asked “Did you make a noise?” the obvious answer was no, he definitely didn’t. Then I asked if anyone else heard it, for fear it was all in my head. The nurse was great, she said she could hear it too, and it wasn’t in my head–but would be louder for me than them. 

The last thing that happened was when they pulled back on the syringe for blood return, Stephen noticed it was sucking in my skin around the opening in the incision. At this point the surgeon said she would go back in, it appeared there was a crack in the catheter where it attaches to the port; she figured she could just trim off any cracked part and then reattach it.   

When I got to pre-op less than an hour later, we talked again before surgery, and she wanted to just freeze the area and reopen the incision to repair it. I was not a fan of just freezing the area and I was being a wimp.  I’ve had experience with freezing before and it not being entirely frozen–so there was a fear on my part about feeling whatever we were about to do. The surgeon was right though, and I knew it. If you don’t need to put a person to sleep, avoid it. Finally I said, “I’ll tough it out,” but I secretly wanted to cry. Just for a second. I remember how it felt to have the central line worked on when we were trying to remove it, and it wasn’t fun–especially the pulling and tugging. 

Next I was in the OR and it all happened quickly which was nice; I didn’t have that much time to think about it. As I was on the surgical table, the nurses were prepping everything and both surgeons popped their heads in and said I would be going to sleep. I told them “you made my day!”–I didn’t want to be awake and present. The anesthesiologist came in and I was out. 

 

When I woke up in recovery, we learnt that the x-ray had shown the catheter had detached from the port, it wasn’t just a cracked line. I asked a nurse how often it happens and they said in the couple years they worked in the OR they hadn’t seen it happen before. On my way out of the hospital I told Stephen I was buying a lottery ticket. My entire life I seem to be the odd one that the rare or unexpected things happen to–so why couldn’t I be one of the rare people who win the lottery too? 

post-op round two

The second surgery was on December 20th so there was a good long break from anything related to my port because of the Holidays. We planned to try again with the oncology nurses on December 31st. 

I saw my doctor just after Christmas; we talked about the surgery and she had gotten the OR reports back. It turns out the catheter had migrated away from the port by 2 centimeters. I don’t know how long it was detached and how quickly it can migrate, but I like to think if it happens again that awful scraping feeling will be my warning.  In retrospect, the painful scratching sensation could have been the catheter when it was detaching or moving? No one has told me that is what happened, but it seems logical.  

Our Second Attempt to Access my Port

The day I went back to see the oncology nurses I was nervous and took Ativan before I went. I also properly applied the Emla cream. When I got there, she was kind like that last time and so empathetic; I told her I was nervous and she was great about all of it, making me feel as confident as possible. 

Having the needle inserted didn’t hurt, and we got blood return. When she flushed, I felt nothing-just as it should be. The port was working! Instead of removing the needle she put a dressing over it so I could go home and administer my meds. That night when we did my infusion I’m certain my behaviours were annoying, my nerves were still getting the best of me. It would take time before I stopped being nervous when we access it.   

I’ve had the chance to use my port for about 8 weeks now since it has been working, and every time we get the needle in I worry blood return won’t come. It will take a while for me to feel confident with it. There have been a couple times when I feel something pinching, and it will take time for me to trust it doesn’t mean something is wrong.  


On New Years Eve we administered my first infusion through the port, and it was the perfect way to end the year on a good note. 

What is my opinion of the port?

If you are reading this because you found yourself searching through Google trying to learn more about PICC lines, central lines, or port-a-caths for whatever reason – I hoped this story would help.

There are a number of reasons a person might have a port put in, and I know from two separate surgeries that it’s kind of scary and there can be mishaps along the way but it sorts itself out. Talk to your doctor and surgeon and ask lots of questions. It has been about 10 weeks since my surgery and when I saw one of the doctors today I was still asking questions; maybe it is annoying – but the more informed you are the more comfortable and confident you’ll be with your new hardware.

Compared to the central line a port makes life so much easier. If I could have had this choice in the beginning I’d have taken it. The other great thing about a port is that you can leave it in a lot longer; for me this is a great option as I’m expecting another 1.5-2 years of treatment. Even once I’m not using it anymore, I plan to leave it for a little while. When my central line was removed I didn’t think I’d need anything like it again, but life proved otherwise – like usual.

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It never stops amazing me how quickly time can pass.  Two months from now will mark the 3rd year since my test results came back positive for Lyme Disease and Bartonella, and three months after that I began treatment under the care of an Infection Disease Specialist using IV antibiotics through a central line.  This lasted for a year and a half, and on the 506th day they removed my central line. It was such a liberating sensation; I could shower without plastering Gladd Press N Seal all over my chest, I could swim and change my shirt without worrying about snagging and pulling the line – I’d become free.  At this point I had decided I no longer wanted to take antibiotics any longer (you can read about it in this post) and in January of last year I travelled to a biological medicine clinic in Switzerland called Paracelsus. I am so happy to tell you I’ve been antibiotic free for 13 months.  In August 2018 I travelled back to Paracelsus and it has been interesting since then with (as always) with more tests of faith, and also triumphs. If you’re just finding these blogs, you can head into the archives and read about my journey from diagnosis to treatment, both on antibiotics and my daily journals from my time at Paracelsus.

Coming home from Paracelsus the second time was a whirlwind. 

During treatments on my last day at the clinic I had my second, and final DMPS infusion to help remove heavy metals. I’ll be doing these at home too, but during my last appointment with the doctor (after the infusion) my head hurt like something fierce. I thought I needed food, but despite my effort to eat a substantial lunch my headache didn’t improve. Within a few hours my headache became worse, I laid in bed with my eyes closed and tears escaping my eyes. Stephen, amazing as always, noticed my forehead had become warm, so he put a cold cloth on my head and I napped for a couple hours. 

I woke up in the morning with a stiff neck, so bad it completely limited my ability to turn my head side to side. This was our last day in the country and we took a drive with Stephen’s grandma. By dinner time we visited his Uncle’s and my neck had gotten much worse. We stayed a little later than I should have considering we had to get up early to fly home. When I woke the next morning, I was in so much more pain with my neck and definitely not looking forward to traveling home. 

It took 14 hours and two flights before we arrived to the hotel. By then it was clear something was wrong, and despite being sore and tired himself Stephen tried to help me out by heating facecloths, placing them on my neck and massaging it. The problem was that even the slightest touch hurt. A lot. The kind-of-hurt that makes you gasp, cringe and reflexively pull away. For the next three nights I slept with one of those travel U-shaped pillows to stabilize my neck and keep it from moving and causing pain. 

After three nights at home we had to leave town again. My insurance company for my long-term disability claim required me to go see a doctor they had chosen. We flew right from our small town, which was nice–saving us a four hour drive each way before getting on another airplane. Altogether we had been out of town for about 36 hours. When we arrived in the Toronto area and got to the hotel, all I could do is lay on the bed with tears running down my cheeks while I breathed through the pain. It felt like my fire mixed with my blood scorched its way through my veins.  

our local airport

The next day we saw the doctor. The visit was upsetting for me, so I don’t want to go into a lot of detail. The appointment lasted for one and a half hours with only the last five minutes being a physical exam. I was still in pain while I sat there, but like I always do–I tried to be tough and get through the appointment the best I could. 

During the appointment I had to bite my lip from time to time. I didn’t do it to keep myself from saying anything, rather it was to keep the tears from coming. I needed a distraction and causing myself pain seemed like the only distraction I could come up with. The doctor talked about the how the priority needed to be ruling out life-threatening illnesses; he listed most of the ones we’d crossed off a couple years ago, but he left the thought unfinished. With all that talk of life-threatening illnesses it brought me back and then my brain got the best of me, I sat there wondering,

“Oh $h!+, am I dying faster than ‘normal’ right now? Did we miss something?” 

It is a terrifying thought. It time warped me back to the end of 2015 and beginning of 2016 when I laid in bed wondering how long I’d live, accepting that whatever was happening might claim me. The only way I could stop listening and block out the conversation was to bite my lip as hard possible without being too obvious. 

The doctor discussed a lot of his thoughts with us and talked about a few scenarios that related to the treatment I’ve had over the last couple years. Ultimately he said, 

“life isn’t a movie with different plot lines, maybe you would have got better anyway–and that you made these improvements despite the antibiotics, not because of them”

Anyway, in my attempt to keep this short and in order to not relive the entire, upsetting appointment I will stop it there. When I walked out of that appointment I sat on the bench outside while we waited for the taxi and I cried. I didn’t cry because of the things the doctor said. I cried because I brutally realized the intention of the appointment was not to help me. The doctor’s goal was not to help find a different diagnosis, or treatment plan, or come up with a plan to improve my quality of life. The only intended outcome was his report to the insurance company. 

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It dawned on me: I didn’t see a doctor whose goal was to help the suffering.

His report was shared with my family doctor; offered a few suggestions, but nothing that helped in my treatment, recovery or to improve my quality of life. It is a helpless feeling. Isn’t that the oath a doctor takes? To help people in sickness? This brought me to tears. I know this happens to other people too, and I think it is important not to internalise those feelings.  In my 32 years on this planet I’ve seen enough doctors to last a lifetime, and this is only the experience with one doctor, and in fact- I’ve been lucky to have had many doctors who’ve cared so much you can read it on their face. Those doctors are the ones who matter, and will always have a place in my heart because these are the ones who go above and beyond what we’d ever expect. 

By the time we got home it was mid-September, and I continued with my weekly IV infusions from Paracelsus. I still had four unused infusion sets from my previous treatment plan so I used those up first but we ran into difficulty. Over the next few weeks accessing veins became much more difficult. My veins were often collapsing, or if we got a catheter in, by the second day it would float out of the vein. By mid-October I had used the old infusion sets up and started into my new treatment plan: three infusions per week that consist of a build-up infusion, procaine infusion and detox with DMPS for removing heavy metals. Despite having done the DMPS infusion twice at Paracelsus it did not go well for me at home for the first time. 

some of the meds from one of my infusion sets

I ended up in bed for a week after the infusion and had lingering symptoms for a couple weeks after that. The idea with doing the DMPS infusion is that it should pull out the heavy metals (you can see the results of my heavy metal test in this post) and ideally your body will then excrete the metals. However, if the body isn’t able to clear the metal fast or well enough, it will reabsorb them and can cause issues. They think this is what happened. 

  What was doing the DMPS infusion like? 

Midway through the infusion I got sharp stabbing pain in my head behind my eyes. By the end of the infusion I wasn’t able to sit up and get off the couch on my own because of sudden weakness and in a flare of intense neurological pain that lasted for days. It was the worst in my arms and legs, which severely affected my sleep. For me, pain like this feels like someone is stabbing me with hot knives. Laying down had been the only option over the next few days, and even that hurt. Have you ever gone camping or had a sleepover when you were young and you slept on the ground? Then woke up because your hip bone or tailbone was digging into the ground and had gone numb and painful? This was the feeling I had in my legs all night long. It would stop for a five to ten minutes once I shifted my body, but even to do that took a painful effort. 

Almost any of the symptoms I ever had flared up at this point. My joints felt like they were splintering apart. I had a week long fever, and a few nights I would wake and have to change into new PJs because I sweat through the original ones. I read and slept a lot through the first five days. 

If you remember my lasts posts about my time at Paracelsus, you might recall the lumps I got in my wrists, and these had continued since being home and were now more frequent, as in a couple times per week.  I can’t use my hands when they’re like this – so it painfully limits what I can do in a day. I also developed strange pockets of swelling on my inner wrists and around my ankles. Apparently things can still become more strange. 

painful lumps in my wrists

At this point the doctors told me to hold off on the detox and DMPS IV for a few weeks. In that time I tried to continue with the other two weekly IVs but ultimately my veins failed us. After three weeks of trying multiple times without success, we stopped trying, and they referred me to have a port-a-cath placed. 

While taking a break from the detox and DMPS one of my doctors asked me to start a kidney, gut and liver cleanse using the Dr. Clark programs. This was a four-to- five week process, which I finished at the end of November. Throughout this time my symptoms gradually resolved again except the pain in my legs. The pain was wicked at night and I became run down and exhausted. To address the pain, I had to increase my lamictal dose (this is one of my meds that helps control neurological pain). During the cleanse programs I took a high dose of turmeric, a supplement I’d already been taking for a couple years–but the dose had been at least 5 times more with the cleanse. I noticed that it seemed to help with inflammation at a dose that high (1500mg three times daily)–if you’re reading these out of interest in my story, then this doesn’t help much–but I thought if there was another person suffering it might be helpful information. With that said, PLEASE talk to your doctor or pharmacist before adding any new supplements or increasing the dose of anything. 

  Can I say the DMPS caused the flare?

No. Definitely not. I had been getting flare after flare of joint pain, lumps and swelling for a couple months before the infusion.  Flares can come without reason or expectation.  If I skip ahead to January when I did another DMPS infusion I still had symptoms after, but all of which had also flared a week or so before I did the infusion. The bright side was that overall, I tolerated it well compared to in October.  

So, when people ask how I’m doing all I can say is, 

“it is still up and down, but I still feel like I’m moving in the right direction and that progress is (very) slowly being made”  

To round out 2018 had a port-a-cath placed which is a blessing as it will help deliver the meds that make a difference for me: my infusions. To take these as prescribed has played a big role in the improvements I’ve made.

On December 7th I went for surgery for the port-a-cath. I was somewhat nervous, but it isn’t too different from the central line I had in 2016/2017. If you’re not sure what a port-a-cath is then a quick Google search will help explain it for you. It’s an implanted device, with a rubber chamber under my chest and that chamber connects to a catheter that goes into a central vein to deliver intravenous medication. To access the port, you use a special needle and poke through the skin into the rubber chamber. From that point once it is in the right position you put a dressing over it and can run your medication. When you’re done with the IV, then you remove the needle and are free to shower, swim or do whatever you like. Having a port means no more poking at my veins and it is so much nicer than the central line I had: the central line is always sticking out of your chest, 24 hours a day, seven days a week. 

after having the port-a-cath placed (and still groggy)

After four pages I would say post is long enough as it is so I will stop it here and write a separate post about getting the port-a-cath and my first experience with it. This was something I took time to research and prepare myself for, so I think as a separate post it might be helpful to other people who find themselves in a similar situation.  

The post Update: Two and a Half Years of Treatment for Lyme Disease appeared first on Soul Nutrition Consulting.

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As promised, here is part two of my second visit to Paracelsus. If you didn’t get a chance to read the first part you can click here.  

Thursday Day 4

I’m happy to say I am doing a bit better, my neck isn’t as stiff and the pain and swelling are improving. Good things are sometimes short lived though–especially in the Lyme Life, as the day progressed, my right wrist grew a lump, and my left knee and ankle started to hurt a lot. The relief from yesterday had been short lived.  

Today I had my first ever intravenous DMPS (heavy metal chelation) infusion. It didn’t go too bad; halfway through I became nauseated, but it passed. The one side effect that seemed to get me the worst during the infusion was that my vision clouded over and topping that off I became exceedingly groggy. I can’t tell you how nice it was to have my husband there this time. Midway through the infusion Stephen popped in to sit with me, and he could see the change in me, asking “what is wrong with you?” because the haze was noticeably thick. 

They followed the DMPS with a less intense detox to help get rid of any heavy metals that might be still floating around. My doctor told me to come home and take more selenium and chlorella too.  

During my appointment with the ND I had last light therapy again. He is a smart guy, you can always see the gears are always turning–he had been thinking about my January visit and asked how I tolerated the live cell extracts. But here is the thing: he didn’t know I didn’t receive them in January. The doctor was shocked and asked why. Dr. Rau had suggested the cell extracts in January, but my two other main doctors disagreed, saying it would be a waste of money. I’m quite sure his jaw the floor.  

He was mildly horrified and baffled, rendered a speechless for a moment. He then said he now understood even more of the bigger picture with me, having thought they did the cell extracts in January it surprised him that I didn’t improve much and why my progression has been so slow.

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I wrote about this cell extracts in my daily diaries from January (you can read it here), these are the injections that cost approximately $400 CHF or so per injection. Well, today I got one. I choked at the thought of having these daily for the last 4 days at the clinic – but I trust him and if it seems important to him I will take the chance and invest in it.  Also: when we paid my bill, I found out these injections are not as expensive as the doctors told me in January. They are about half that price which is a lot easier to handle. 

They use extracts from different types cells. Today they gave me placenta cell extracts, which are used in endocrine disorders (if you remember a few months back we found out I’ve been in an “endocrine crisis”, you can read about it here). My test results aren’t back to see if there is an improvement in my neuroendocrine panel … but these cell extracts are like stem cells and can be effective in treating endocrine weakness, and in treatment following severe illness, according to the information sheets.  

He also mentioned doing adrenal and liver cell extracts sometime over the next four days. They use adrenal cell extracts in combination with liver cells for treating allergies (thankfully, this is one struggle I don’t have), chronic rheumatic conditions, fatigue and “burnout”.  

There are no further test results back yet, so I can’t say how other things have progressed compared to January, at least not objectively. The only other results are from an amino acid profile – which they didn’t do in January. Some levels came back low, so he said they may do an infusion to bump them back up.

As for the lovely possibility of a hyperthermia session, they said if we can move other therapies around in other’s schedules, not just my own – they’ll try to do hyperthermia Tuesday morning (only if it seems like a safe idea) and then I’ll be able to come to the Clinic Wednesday for monitoring before we fly home Thursday.

  Friday Day 5

Today was a quiet and easy day. My therapies were laid back, and I finished early. I had oxyvein and a build up infusion this morning, then had an appointment with the doctor. The doctor did two more live cell extract injections, one placenta and the other adrenal.

Last night was hard for me and I can only assume it had been caused by the DMPS. I had flu-like aches with a sudden flare up of more joint pain. My eyes were still clouded over. During my appointment with the doctor I asked about IVIg. This is something many people with Lyme opt to do, I can’t explain our conversation because it jumped around, but right now he didn’t think it is something to pursue. 

  Saturday and Sunday

After the clinic on Friday we took off to a beautiful town called Grindelwald. We planned this weekend away a few months before our trip to Switzerland with some of Stephen’s family. It was about a five hour drive from the clinic and we met up with Stephen’s two cousins, and his cousin’s husband and their baby. 

It was late when we all got in on Friday, by the time we checked into the hotel it was around 10pm so our first visit didn’t take long, we stayed up chatting until about 11:30 then all crashed into our beds.     

Grindelwald is a town to visit when it is a clear sunny day, so if you’re reading this and thinking of going I would suggest planning around the weather if you can. We made the best of our rainy, dull day though. The poor weather played out in my favour;  when I woke up and found out I couldn’t lift my legs or arms. Stephen had to take my PJs off for me and lift each leg into the shower for me, then help me out, dry me off and get me into my clothes for the day. 

Was I frustrated?

Yes, you have no idea. 

I hoped to do a lot of exploring in this beautiful little town, and I knew I would miss the opportunity. Even so, I know I am lucky to have someone who would do all of this for me, including bringing me accross the ocean to go to the Clinic. 

After sleeping in we bundled up and started out for lunch. We walked to a restaurant near one of the gorges. Luckily for me there was a very gradual downhill slope to get there, so with Stephen as my balancing pole I shuffled to the restaurant. I walked painfully slow, but no one seemed to mind.

We had lunch, then instead of going on a walking path along the side of the gorge I had to go back to the hotel. I pushed to my limit and couldn’t do anymore. Stephen and I took a bus back, and I was as rigid as you can imagine. Apparenty, my body tricked itself into rigor mortis. Stephen drew a bath and got me into the tub to soak, which usually helps a little. After that I laid down, and we both ended up falling asleep. The week of therapies at the clinic got the best of me; I must’ve fallen asleep the second my head hit the pillow. I remember waking a couple of times later in the afternoon, around 3pm and saying to Stephen “we’re the worst company to go on a trip with!” but we were both so groggy that we fell back asleep. Finally around 5pm we met back up with Stephen’s family.     

We got ready and drug ourselves out to dinner, at a place called C&M which had been excellent. Everyone was happy with their meal, so if you’re heading to Grindelwald keep this place in mind.

Finally Sunday I woke up and could move better on my own. The weather cleared up a bit and when there were breaks in the clouds we got to experience what an amazing view the hotel had. We took a train up into the mountains and had lunch there. The clouds became a lot more dense at that elevation, so there wasn’t a view… but it is neat to have the sensation like you’re on a small plot of land floating in the clouds. From there you can take another train to go to “the top of Europe” which is the highest point you can reach by train or cable car, but we decided against it knowing the view would be obstructed by the clouds. Once we got back down to Grindelwald, we said our goodbyes and all made our way home.  

  Monday Day 6

I had an appointment with the doctor this morning, this time the one who had Lyme himself. The original plan had been to go over my home supply for medications, but he wanted time to review everything from my week prior and so we only touched on a few things that we will cover in tomorrow’s home supply. 

My amino acid profile had been mentioned again, he wants to prescribe some for me to take at home. His biggest hope for me is to continue detox and do more of it–especially working on removing the heavy metals. He will prescribe DMPS for my home infusions. 

The results from my stool test came back. There are some positive changes! The pH of my gut is still too alkaline, but it improved from January. Another great change is the immune system cells in the gut were present enough to be measured! This made me so happy, you can’t imagine. In January it was too low to even measure and this time the value was still far too low–but at least it registered.

This is my current result, under Immunity of the intestinal mucosa it says shows my current value on the left (598.7ug/mL) and on the right was my result from January (less than 277.5ug/mL), which was too low to be measured

The results from the saliva test (the neuroendocrine profile) are not back yet, and I won’t have them before I leave to go home. Another topic we discussed is my body’s iron stores, and its inability to build them, and whether my body can out compete the bacteria for iron utilization. Given my iron stores are as low as they are at the moment, they’ve arranged to do a large dose of IV iron during today’s infusion. 

As we already knew, my inflammation markers are still high (CRP and ESR) and the next time I am here he would like to investigate this more in depth. His goal is to understand where the bacteria is hiding in a large quantity and keeps coming out from–he said it could be a few things, perhaps from my brain or gut, or somewhere else, but he would like to try to find the primary source.

For my home supply I will do three infusions per week, a detox IV with DMPS, an up-building infusion and a procaine infusion. Another thing he wants to consider is how I will tolerate doing the extreme hyperthermia treatment in the future. He would like to come up with a plan ahead of time as he thinks that it might cause a Bartonella flare. This makes a lot of sense considering when I did the regular hyperthermia session back in January I had a wicked time afterwards. 

As for hyperthermia during this visit? It isn’t going to happen. I’m just not stable enough to try it and then travel two days later… and I can’t say I’m disappointed to skip it. 

The post My Second Trip to Paracelsus for Lyme Disease Treatment (part two of two) appeared first on Soul Nutrition Consulting.

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Back in August I posted about my decision to go back to Paracelsus.  It was a pretty fast turnaround between deciding to go back and actually being there.  We left town in the middle of August and when we landed I had one day to sleep off the jetleg before I went to the Clinic for an “assessment day”.  After this I had five days off from the clinic before I started full-time.

  Why wait five days?

I did this my first time to Paracelsus too; by going in to start the assessment process we were able to get further ahead. On that first day a lot of blood tests were done – while we took those next five days off the results had time to be processed and find their way back to my doctors.  The doctors could then use all of that information to help make plans and decisions about my course of treatment while I was there.  

Assessment Day

 
Today I met with the new doctor and the naturopathic doctor who I had in January and who had been following me through phone calls and emails the past 9 months. The new doctor was great, I copied his biography in my last post (you can read it here); he has battled Lyme Disease as well and therefore has a unique perspective. I felt good about this appointment; we went over the history of how I was prior to being bitten and the progression of the symptoms I experienced and treatments I have gone through. Basically, we talked about everything over the last four years and how I’ve been doing since coming to Paracelsus in January. 

The new doctor was exceptionally nice and when he would ask about a symptom and I’d try to verbalize how something feels, such as the “Lyme Headache” and the swelling and stiffness in the upper part of my cervical spine and he expressed his sympathy. He knew exactly what something felt like, making it a lot easier to explain–some things are very Lyme-specific and he was very aware of those things. It was great to be understood so well. It reminded me of being at Jemsek Clinic the first time and they knew what I was going through. It never seemed like I was explaining a symptom and hear a voice in the back of my head telling me I sounded ludicrous. 

A long, long time ago early in 2016 when we began to think I had Lyme Disease, I found the Horowitz Questionnaire and filled it out. I scored 99.5, which was undoubtedly high. He asked me to fill the form out again, as it helps to paint a clear picture of what my current symptoms are, but it also shows the progress I’ve made in the last 27 months of treatment. Yeah. Twenty-seven months, it’s crazy. My current score is now in the high 60s, we will fill it out again at the end of my time here to see if things worsen, stay the same or improve. I’m surprised I didn’t think of doing the questionnaire again as a measure of progress, but it is a brilliant idea. 

The doctor has his own clinic in Berlin and has a 50% (part time) contract at Paracelsus until the fall when he is primarily working at Paracelsus. He is still new enough to the Clinic, so he isn’t familiar with all the IV infusion medications we have access to here, but he knows what he would like to use. He will communicate what he would like to my ND (naturopathic doctor) and they can figure out what is available here and what we can substitute. 

We’re not sure yet what the upcoming week will look like, my schedule wasn’t planned yet. There are a couple tests you need to take home to do, such as a stool and saliva test- so I have to do these and mail the samples to the Lab. The only plan we talked about is still vague, but the idea will be to use my time at the Clinic to test my body. We need to find out how I will react to the treatments they are hoping to send me home with. After working with me the last nine months the ND could see how sensitive I was to therapies and treatments last time, so this will be a test run of what my at home protocols might be like. 

dipping my toes into the sea on one of the days off from the Clinic

  Therapy Days   Monday Day 1 

I did well on my days off between the assessment and starting at the clinic today. Truth be told, when I came in Tuesday last week I felt horrid, my doctor commented that I was “moving like an 80-year-old lady”.  Travelling this far unquestionably kicks my butt, we have a four hour drive to the airport, a two hour and an eight hour flight and then another hour to drive to my husband’s grandmother’s house. 

On my assessment day last week I did an infusion, and within 24 hours I began to feel better. I had a couple good days, but by Sunday “it” was starting all over again. Maybe it isn’t just my body that is at fault though? There has been a full moon – which ordinarily does not bother me, however I’ve noticed the last two years in a row that the September and October moons have kicked my butt hard. I have literally been forced to remain horizontal, unable to lift my legs, my arms and sometimes even my head. Perhaps this moon is getting the best of me too? 

It is always nice to find someone, or something else to blame, right? 

My symptoms during my days off from the Clinic crept in slowly at least. It took two days and by Friday things hurt again, Saturday another lump grew in my wrist and on Sunday the lump grew a lot. These lumps are almost always disabling, leaving me left without the use of my hand(s) for days. It seems like my lymph nodes are angry–it hurts to touch any areas where bigger clusters of lymph nodes sit: my underarms, upper inner leg…. one cluster has swollen in my groin again. This was something that happened a long time ago and has only flared once in the last two years. 

The typical lumps that you’ll find in my wrists or on my feet every few days.

My first appointment today was IHHT. During my 45 minutes I got anxious. This happened in January when I was here too during my first appointment. IHHT therapy alternates high and low levels of oxygen, so part of me wonders if the anxiety spikes during the low levels of oxygen… I can’t help but worry about what therapies are necessary and if there’s something missing that’s more important? 

I know that I will see the ND nearly every day this week, and next week I’ll see the other doctor on my last two days. 

On Friday I am scheduled for whole body hyperthermia which I am anxious about. When I did it in January, it was horrible (you can read about it here). The last one was awful, but knowing that ahead of time may help to keep me from panicking, or… I’ll just end up psyching myself out and doom myself from the start. 

During my apt with the NP I had a bit of good news. In January I had toxic levels of a few mold species, but it has improved a lot. Most are within normal limits now. He also delivered some less than desirable news: my ANTI-TPO went up again from last month (this shows active Hashimoto’s Thyroiditis) and my bartonella titre is high still. These two are ongoing battles, but they told my last time once I can remove heavy metals from my body my thyroid should become a lot happier.

We discussed the doctor’s plans for the week. They feel like the last 8 months I’ve been doing therapies that are stabilizing my body, and now it is a bit more stable we will be moving into a detoxing phase. During my first trip in January when I found out about the heavy metal toxicity I asked if I could do IV chelation. They told me it would be too harmful for me in the state my body was in. This time we will try it. We will see if I can detox without harmful side effects. While I was in my appointment we also did laser light therapy: 

  Laser Light Therapy 

This is done intravenously. They insert a catheter into the vein and then the doctor chooses a color of light to use–each having different applications. Then the doctor determines a strength and the duration. I had saved the information sheet so I could better explain this, but it turns out I’ve lost it or thrown it away, but for the sake of explaining it I’ve googled and picked out info that is as close to the explanation I can find. 

The color we used throughout my time at Paracelsus was blue. Blue light is supposed to fight inflammation and help with chronic pain. It may also have anti-bacterial effects on the body. Other colors of laser light have functions like improving energy and circulation, and there are three to four colors in total.  

In terms of my symptoms, today my wrist has ballooned out. It is the worst I’ve ever seen it, there is more swelling and redness along a big vein in the other arm. Nothing new… this is common these days. I’ve been getting these lumps once or twice a week–I think I have lumps and bumps in my wrists more than I don’t. Why? I’m not sure. My previous LLMD told me these lumps are related to the Bartonella infection and vasculitis is the most agreed upon reason with most of my doctors.  

We talked about the three hour hyperthermia session I’m scheduled for Friday afternoon; this is the same therapy that was hard on me last time. We discussed whether it is a good or bad idea… or if I should do a modified version. The doctor thinks the best plan would be to re-assess daily and decide closer to Friday if we think my body can handle it. I genuinely feel so much better (mentally) here this time; my doctors actually listen and are in tune with the issues we’re facing. 

One improvement I’ve noticed over the last 8 months is my energy level. I’m not exhausted 24/7. Since returning in February from the Clinic I’ve continued with weekly procaine injections on my adrenal glands…which I am sure are making a big difference for me. He also said it as a sign my body is improving its ability to produce mitochondria (the “power house” in each of the body’s cell)–this is great news. While I was on antibiotics, I was on some that cause massive mitochondrial damage. It is a great indication that I am slowly making progress. 

There is one thing that absolutely has not improved: extreme muscle fatigue and weakness. He said it tells us that there are problems within other aspects of my body’s cellular biology. These two things should heal on their own over time and with a little help from the protocols I’m following from my doctors. Other things, such as the joint pain, inflammation and these lumps are secondary to the bacterial infection which still is not controlled. 

  Tuesday – Day 2

Today I had a live blood analysis done again. It showed that my blood is too acidic (it should be alkaline) so he’s prescribed something for me to take for 10 days, two times per year. There is a Catch 22 with this though: I have the opposite problem in my gut because it is too alkaline (and should be acidic) so it’s important that we don’t overdo it when trying to bring up the pH of my blood. The doctor saw a lot of cells “sticking” together in clumps he referred to as “islands”–this could mean one of two things: excess protein or inflammation. We know without a doubt that in my case the problem is inflammation, which is supported by a high ESR and CRP level. 

live blood cell analysis

He saw some Candida, small amounts, but it’s there. It also looked like there might be arsenic toxicity present and this was confirmed in the previous heavy metal tests. There was a lot of evidence of low metabolism in my liver, so he’s prescribed something for that. There were “symplasts” present, these can cause hardening of the blood vessels and slows down the blood flow. They vary in color and size and are densely packed with toxins and microorganisms. 

From what he saw during the blood analysis he said it is very clear that the infections are a big problem still. It is going to be a balancing act of killing those bugs and building my body back up. He prescribed a couple penicillin-like meds for me – these are not antibiotics though… they work like an antibiotic, without gut damage and the rest of the havoc that come with antibiotics. 

So, like I said before- they planned to assess and change things daily for me which they’re doing today. Given the lumps I have in my wrists (there are now four in total) plus the evidence of a lot of inflammation he changed my plan for today. We won’t be trying to detox yet, he wants to get the inflammation down so I’ll do a procaine infusion, which should also help with pain. Something I didn’t realize, or I had forgotten from last time is that procaine will also help make my blood less acidic. 

We will continue to play everything day by day; he said he needs to see some improvement before he’ll let me do the hyperthermia session. We will use the upcoming days to prepare for it and maybe do it Thursday instead of Friday. They’d rather try Thursday then have me at the Clinic all day Friday rather than doing it Friday and let me suffer at “home” all weekend. If I don’t improve in the next couple days, they’ll move it to Monday. 

During our chat we talked about the overall therapies they’ve found helpful in Lyme Disease and discussed things that might be highly beneficial for me. He mentioned that soon they will get newer technology for hyperthermia and that it could be something I’d benefit a lot from if I came back. It’s a much more serious therapy, so much so that “therapy” doesn’t seem like the right word.  During the procedure the patient’s body temperature goes beyond 41C and you are under sedation as you would be in surgery. 

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Wednesday – Day 3

The ND consulted with the new “lead” doctor at the Clinic about me, wanting to get more opinions about my situation and the upcoming hyperthermia session on Friday. The other doctor pulled me aside in between appointments and I felt so safe and reassured by him. I wish my first experience had been like this one. He even brought me to tears… that’s not something that happens easily. We talked about if hyperthermia is a good idea, he said he will not take a chance on anything that could make me worse. He said being put through therapies and getting worse should never happen, saying 

“that would be non-sense, and I don’t accept any non-sense,”  

I’ll do Hyperthermia on Tuesday only if I turn a huge corner over the weekend, so they’ll be doing IVs to help prep me until then.

He has studied Lyme Disease for over 20 years; and aims to understand why some people end up having a systemic infection. In his clinic in Germany they used to treat mostly cancer patients, but now it’s split between Lyme and cancer patients. He discussed the cystic forms of the bacteria and their life cycle, and how to best treat the infection, the treatment should be cyclic, pulsing the treatment, just like my last LLMD did with antibiotics. His opinion is that once you can get rid of the Lyme bacteria, then the co-infections can be dealt with much more easily. With my last LLMD they had the opposite theory, treating co-infections first, then you can target Lyme–but I also think there is a number of successful routes of treatment, and what works for one person, may not work for the other. I feel confident though, these doctors at least know what we’re dealing with and how difficult the infection(s) can be. 

At his other Clinic in Germany, he has used extreme hyperthermia treatment for years on cancer patients. The reason it is extreme is that it heats the body to 41.6C… I have questions about how this is achieved safely and complications of such a high fever are avoided, but that is something to discuss a little down the road. They’ve been using this treatment for Lyme patients for a while now. Following our conversation was a bit difficult, English isn’t his first language, but man–does he ever talk fast! I talk quick myself, often losing people who’re not used to talking with me… so for me to have a hard time keeping up with him, that has to tell you something!  

If I understood him correctly, he said they find an 80% reduction of bacteria after one hyperthermia treatment – further treatments can bring it down to a 98% reduction, and then by this point the body should handle the last 2% of the infection, and the co-infections can be dealt with.  

After seeing me for the last nine months and the progress I have (and haven’t) made, they’re putting together more pieces of the puzzle of my health. The doctors said the infection is rooted, and is stronger than they originally thought. It doesn’t mean that the work I’ve done between my first visit and this one was fruitless, all the infusions I’ve done helped, but they aren’t enough that my body can take over. I appreciate the honesty and transparency when they tell me it will probably take up to 5 years before my body recovers to its fullest.  Do we know what that will look like? No. My recovery and someone else’s could look very different.

The new lead doctor told me again that there will be “no non-sense” and if there’s even a small feeling the regular whole body hyperthermia will aggregate me and kick up the infection, they will not do it.

I told him I wished he was here in January and he casually relayed that times had been very bad before (not a surprise given I had quite a bad experience in January) but he said he will run this clinic so it becomes “the best in the world”. I felt a lot more confident again – I have three great doctors this time.

Otherwise things today aren’t great, but I can’t complain too much. We are continuing to have a harder time finding and accessing veins. I’ve also had a wicked “Lyme headache” for a few days so they did a couple procaine injections in my neck. It’s relieved a bit of the pressure. The lumps in my hands and forearm haven’t improved though. On the bright side: the shoulder pain is gone and I’ve been able to comfortably dress and undress myself without help, but I’m still walking like an 80-year-old lady.

The post My Second Trip to Paracelsus for Lyme Disease Treatment (Part One of Two) appeared first on Soul Nutrition Consulting.

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These granola-style bars are my favourite. Hands down. They are easy to make and store great in the freezer. 

Personally, I find having quick grab and go snacks super handy.  I started to keep snacks like this on hand when I was constantly travelling to doctor’s appointments because they make healthy, Lyme-friendly food packing easy. These bars are also great because they don’t need to be refrigerated and they pass international air travel food rules. 

These blueberry bars are gluten free, and you can substitute the egg for a “flax seed egg” to make it vegan.  For anyone with nut allergies or intolerances you can sub out the walnuts for more ground flax seeds, or add some pepitas for a bit of a crunch. 

Why else are these good Lyme-Friendly snacks?

The antioxidant properties in blueberries help to fight free-radicals that are floating through our bodies and stopping them from causing cellular damage. 

Blueberries are a source of flavonoids – think of flavonoids as just one of the many kinds, or categories of antioxidants.  Aside from protecting against cellular damage, the antioxidants in blueberries can also have an anti-inflammatory effect.  For many people with Lyme Disease, chronic, systemic inflammation is a concern. 

Next, let’s talk about omega 3 fatty acids

There are three kinds of omega 3’s: ALA, EPA, DHA.  Of these three ALA is really important because our body cannot make it on its own.  What does that mean? You need to ingest food sources of ALA.  As for the EPA and DHA, our body can use small amounts of ALA to make them – so the thing to remember is to include sources of ALA in your diet.

Omega 3 fatty acids play a big and very important role in our bodies; and this is also super important for those Lymies out there reading this.  Long term effects from an untreated infection can lead to neurological damage.  Omega 3’s play an important role in nerve and membrane development. Aside from neurological damage, one common symptom that a lot of us have experienced is joint pain.  It is one of the early signs and symptoms of the Disease.  Omega 3 fatty acids may also help reduce joint pain. 

These blueberry bars contain sources of ALA, both from walnuts and flax seed.  Bringing it all together these bars pack an antioxidant, anti-inflammatory punch that can help repair and maintain nerve membranes and help alleviate joint pains. 

Curious to know how much ALA you need in a day? Scroll to the bottom after the recipe!

Blueberry Oatmeal Bars

Snack bars high in anti-inflammatories and antioxidants

  • 2/3 cup shredded coconut
  • ½ cup walnuts (chopped)
  • 2 cups oats
  • 2/3 unsweetened corn flakes
  • ¾ cup cooked lentils (pureed (red lentils work well))
  • 1 egg
  • ¼ cup pumpkin (pureed)
  • ½ cup unsweetened applesauce
  • 1 ½ tbsp olive oil
  • ¼ cup whole flax seed
  • ¼ cup ground flax seed
  • 1/3 cup unsweetened dried cranberries
  • ½ cup fresh blueberries
  • 1 tsp cinnamon
  • ½ tsp nutmeg
  1. heat the oven to 350F and in a large mixing bowl combine the coconut, walnuts and oats
  2. add the corn flakes, flax, cranberries, blueberries, cinnamon and nutmeg
  3. mix in the lentils, egg, oil, pumpkin and applesauce and combine until the mixture is sticky
  4. lightly spray a 10×15 inch cookie sheet with cooking oil and spread the mixture evenly onto the cookie sheet and lightly cut into desired size for bars
  5. bake for about 30 minutes or until lightly golden, once done wait until they’ve cooled for 15-20 minutes before completely cutting into bars

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Daily ALA requirements range from 1.1 grams per day for women to 1.6 grams per day for men. 

Food Sources include:

Edamame/baby soybeans, cooked (1⁄2 cup)                         0.29 to 0.34 grams

Winter squash, cooked (1/2 cup)                                           0.18 grams

Soy milk (1 cup)                                                                      0.19 grams

Salmon, Atlantic (2 ½ oz.)                                                      0.26 to 0.28 grams

Beans, navy/pinto (3/4 cup)                                                   0.17 to 0.24 grams

Tofu (3/4 cup)                                                                         0.27 to 0.48 grams

Almonds (1/4 cup)                                                                  0.15 grams

Chia seeds (1 tablespoon)                                                      1.9 grams

Flaxseed, ground (1 tablespoon)                                           2.43 grams

Hemp seeds (1 tablespoon)                                                   0.19 grams

Pecans (1/4 cup)                                                                     0.25 to 0.29 grams

Soy nuts (1/4 cup)                                                                  0.42 grams

Walnuts, black (1/4 cup)                                                        0.85 grams

Walnuts, English, Persian (1/4 cup)                                       2.30 grams

Flaxseed oil (1 teaspoon)                                                       2.46 grams

Walnut oil (1 teaspoon)                                                         0.48 grams

The post Blueberry Oatmeal Bars appeared first on Soul Nutrition Consulting.

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This Lyme Disease update will be quick, mostly because I am short on time and perhaps don’t have a lot to say? I wrote an update in May about how I’ve been doing, which is still very up and down. 

Whenever someone asks how I am, my answer is always “up and down”.  In terms of my current treatment there isn’t too much going on. After returning from Paracelsus I had a lot of issues, including new ones.  Two months ago my body held out on me and my period came 18 days late; this is something that has never happned before.  A few months back during one of my monthly phone call appointments with my doctor at Paracelsus he felt I was having an “endocrine crisis” and this was another bit of evidence to support that.  Even when my health was at its worst in 2016 my period still came on time. Having missed so many days seemed so strange. 

Why now?

I’m definitely better off than I was two years ago when I couldn’t walk or even hold my head up some days.  

Through all the mess my Lyme-life was upon returning from Paracelsus they decided I should stop most of my meds. Up to this point there have been adjustments here and there, but to summarize my current treatment protocol I can tell you I do IV infusions twice a week, so have a catheter in my arm for three days of the week, then freedom for the next four days before it starts all over again. 

with an IV line in my arm, covered with a fabric sleeve for protection

I spoke with my doctor from Paracelsus once a month from March until June. When we last spoke in June I’d been doing poorly for a while and I could hear the disappointment in his voice; I knew he was expecting my body would have taken a turn for the better, not worse. 

My original plan was to head to Paracelsus near the end of the year. I had made no any solid plans for it–I think because, in all honesty I didn’t want to go. Just the effort alone to get there is difficult for me. When I spoke with my doctor in June, he felt it was best for me if I came sooner than later. He felt that my immune system just wasn’t working. 

There is a balance that our body should be able to maintain, it can keep us healthy from invading germs if there are no underlying issues within our bodies. Studies have even shown that some people test positive for borellia (the bacteria causing Lyme) but show no symptoms; their body can handle the bacteria and keep it from taking over. This is what my body failed to do. 

Through my 500 days on IV antibiotics we killed a lot of the infections, not just Lyme, but Babesia and Bartonella too. Then came a point where it felt as though I was killing as much of my healthy cells and tissues as we were killing the infection; that is when I stopped antibiotic treatment.  

Last day of IV antibiotics

People often ask if it is possible to get rid of the infection entirely

The answer I’ve heard most from listening to various doctors, or reading what they’ve written is no. To kill and be certain you’ve killed the infecting microbes, you’d have to kill the host too, and in this case–I am the host. This means that though the antibiotics killed a lot of the infection once I stopped them it became the responsibility of my body to keep up the fight. 

The bacteria are stealthy and can trick the immune system to ensure their own survival. Top that off with my immune system being weak and immeasurable according to the tests done at Paracelsus, we knew it would be a heavy task to rebuild my immune system so it can take over the role the antibiotics had played. 

Based on the last few months and what I’d explained to my doctor he felt that my immune system wasn’t doing much for me. With that, the result is bacteria that can multiply and grow, risking a serious relapse.

This is why he was so solemn when we spoke and encouraged me to return as soon as possible so we could come up with a new plan.

Hearing this was hard for me. I felt broken when I got off the phone. When Stephen got home that night we discussed it and agreed that it is better to keep on top of things rather than allow me to deteriorate and have to regain the ground we’ve already covered.

As I mentioned in my earlier blogs about Paracelsus, I had a team of three doctors. Two of the doctors are now gone, which–for me does not matter as I would have argued against seeing one of them again. The doctor who remains at Paracelsus was my favourite, and he is incredibly smart, going back just to see him would have been worth it… I have a lot of trust in him.

But there is a new doctor.

In May I received the Paracelsus newsletter introducing the new doctors. When I saw Dr. Richter’s biography I knew going back to the Clinic would be worth it. When they had a turn over in the staff, doctors left and new ones came in. One of the new ones had a long battle with Lyme Disease himself. Him and my other doctor will work together with me this time. 

This is an excerpt from his biography

After completing his studies in human medicine in the late 1980s, Uwe Richter’s medical career began as a radiologist. In 1992, he turned his attention to new economic challenges when he realized that as a radiologist he would not be able to meet his high goals of a holistic approach.

As an innovative entrepreneur with executive responsibility, he built up various medium-sized companies in the following years and managed them with great success. 

In the period 2010/2011, he suffered from severe burnout with associated depression and chronic Lyme disease. He was completely incapacitated for work from that point on and had to retire completely from working life for several years.

He could not put up with this heavy blow and the associated, deep case and turned to one of the most renowned molecular physicians (internist) of Germany, Dr. med. Ulrich Strunz, u.a. known as running pope by forever young.

With the help of a micronutrient therapy and his prescribed running training, Dr. Strunz back to a healthy, energetic life.

The treatment by Dr. med. Strunz was a decisive turning point in the life of Uwe Richter. As a doctor newly inspired and motivated, he retreated completely from business life in 2012 and devoted himself, tirelessly and very successfully, to studying, learning and training, in order to be able to practice again as a licensed physician, his actual vocation. Since 2013 he runs a practice and day hospital in Berlin (Quickclinic).

He has further developed the concept of (ortho) molecular medicine, because not only the right substances (micro and macronutrients) belong to the healthy body but also an excellent detoxification and a functioning repair of the body cells. And, just as important in the central process of a healthy body are excellently functioning mitochondria (energy power plants of the body).

In two days we will leave for Switzerland. This time my husband will stay the entire time with me, as we will only be away three weeks instead of seven weeks like last time. It isn’t easy for him to leave work for this long, but it was important for me he could come this time. My last visit was incredibly hard, physically and emotionally. 

We will be home in early September, only to have to turn around and leave again at the request of my disability insurance company. 

I know many other people with Lyme Disease fight for disability insurance. It was a battle to get it approved to start with. They denied my initial claim, so I had to appeal it. The appeal process took so long it was an entire year before I could get disability benefits. The financial strain we had in 2016-2017 was a situation I never expected to find ourselves in. 

Being approved for disability benefits helped ease some of that financial burden, but they only approved me for two years before they would reassess my case. In March my insurance company sent someone to our home to do an assessment, and although I didn’t receive a report regarding the outcome of that visit, recent discussion over the phone has informed us that the assessor deemed I still could not work.

I understand that insurance companies deal with many cases and different people, and I can imagine the case managers might cross difficult personalities throughout their career. I am now on my third case manager and am not sure why I was passed down three times? 

My first encounter with my current case manager was in December. I got off the phone upset and in tears. I’d never been spoken to like that before; she was condescending and had absolutely no empathy for how difficult this illness is. When I was finally off the phone I called my parents, crying. If you don’t know me too well, let me tell you that the last time I called my mom in tears was in 2006 during my third year of University when I got a wicked phone bill and (oops!) a speeding ticket that together would have drained my bank account clean. 

Fast forward back to the present day, I had yet another ugly encounter with my case manager. I am sharing all of this because after discussing it with other insurance and medical professionals in my community and a lawyer–I learnt that some case managers bully their clients. I was so upset after I got off the phone with her so that was when I sought advice and a couple people suggested filing a complaint; I didn’t want to get anyone into hot water at work, but the way she treated me was completely unfair, and I am certain I am not the first person to feel this way. 

Ultimately we are all human, having a human experience. Who are we to judge others and treat them poorly when we are all only doing the best we can? 

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I will share with you the letter I wrote to my insurance company’s complaints department, and afterwards I will share the resolution and I hope that this helps other people who’ve been in my shoes or find themselves in this situation.  No one has the right to make you feel like dirt on the bottom of their shoe.

Please accept this letter as my official complaint and request for a new case manager for myself, Sara Brunner. 
Policy XXXXXXXXX
ID XXXXXXXXX
My claim as been with (NAME OF INSURANCE COMPANY) for over two years, and I’ve dealt with many members of the (COMPANY) staff, including my two previous case managers, (NAME) and (NAME) who were very pleasant. I’ve always been treated with respect and dignity until my recent case manager, (NAME) has been involved.  

The very first conversation we had late in 2017 was incredibly upsetting to me; I felt as I was being spoken down to and her statements were very condescending. In giving the benefit of the doubt, I thought perhaps she had a bad week and someone had recently been very rude with her, and the attitude she presented with over the phone was a result of that and I tried not to take it personally. I was so upset that I called my parents in tears, and then wrote to my mental health counsellor and we discussed the details of my first experience with (NAME) in a few of my sessions. 

In early 2018 I was told that a third party company would be sending someone to my home to do an assessment related to the upcoming “change in definition”, the individual came to my house at the end of March 2018. I’ve never received communication, written or verbally regarding that assessment. He confirmed with me at the end of our home visit that he would have his report to my case manager within 10 business days. I’ve never received any further communication regarding this visit. 

Next, on July 26, 2018 I received a call from another third party organization informing me that my insurance company has requested another Infection Disease Specialist review my case and that I was going to be sent, expenses paid by (INSURANCE COMPANY) to Mississauga, Ontario. I explained that I am scheduled to travel to see my team of doctors who are managing my current treatment, and that I would be out of town from August 19, 2018 to September 6, 2018. The receptionist said we could schedule my appointment upon my return from seeing my current team of doctors.

The following day, on July 27, 2018 my case manager, (NAME) called me to ask how I have been doing. The phone call was on hands-free and my mother, who was at the house helping me at the time, was listening. She is willing to provide an affidavit with her recollection of the conversation if requested. I mentioned to (NAME) that I had a phone call the day prior from the doctor’s receptionist and we discussed the appointment options that were presented. I explained that the August 1, 2018 appointment date was too difficult for me, as we just had a death in our family and I am accompanying my mother to take my grandmother to the airport in Winnipeg, Manitoba, four hours west from Dryden. We continued to discuss how I am doing at present, and I explained that my symptoms were still “very up and down”. (NAME) told me near the end of the conversation that it appeared the doctor’s visit was scheduled near the end of September 2018, but that the third party that schedules his visits would confirm the date with me. 

On July 30, 2018 I received a call from the receptionist for the doctor once again, to set a date of August 15, 2018. I expressed a bit of surprise and was told my case manager said it must be on this date, that I must see the doctor before I travel overseas to see my team of physicians. The receptionist then told me if I was unable to attend on this date that I was supposed to call (NAME), which I did.

I recorded our conversation; after being treated poorly by (NAME) in the past I felt having witness in the form of a recording was an appropriate step to take. The following is a transcript of the conversation:
(NAME) (further referred to as “A”): (INSURANCE COMPANY), A speaking Myself 
(further referred to as “M”): Hi A, it is Sara Brunner calling
A: Hi, how are you?
M: I am okay, how are you?
A: I’m good, thank you
M: Um, I just got … (interrupted by A)  
A: What can I help you with?
M: I just got a phone call, from the, um clinic
A: okay
M: and they had discussed about the date on the 15th and I just wanted to talk to you about it just because they said I would have to travel to Thunder Bay first, which is like a four hour drive and I am not, definitely not able to do that by myself. I haven’t driven on the highway in a few years yet, and I am not at that point. Um, so having to get to and from, that’s an extra eight hours, plus the travel and I am assuming that I’ll be staying overnight, so that means I would get home and basically have to turn around again to fly out to see my doctor in Switzerland. Its just going to be really, really difficult for me physically.
A: okay, so the appointment is for August 15th and you said your leaving August 19th, is that right?
M: Yeah
A: Ok, so we need for this assessment to be done for yourself, now that gives you four days to ah, travel to Switzerland, um, we do need – the thing with the -?- is that the specialist is not going to be available at all times. Ok, so the specialist is very difficult to get and we’ve managed to get the head of Infectious Disease is Mississauga. Ok, so, having you travel to, as she mentioned, um Thunder Bay, is that right?
M: Yep
A: So having to travel to Thunder Bay, we can arrange transportation so you don’t have to drive there. M: So I would be able to fly right from Dryden?
A: Not from Dryden, we can get you a ride from Dryden to Thunder Bay. There is no flight out of Dryden directly to Toronto, that is why we have to do this detour M: okay, umm, so, would I be flying out on the afternoon of the 15th? A: we’re going to try our best to get you arranged for – you wouldn’t be flying on the 15th, you would have to fly out the day before
M: okay, and then when would I get home?
A: you would get home the next day, the day after the assessment
M: okay, is there any way I could have family accompany me instead?
A: you can have whoever you want coming with you, but we wont be able to reimburse you for that that, ah, travel. If you want to have someone there, you’d have to pay the expenses. We are paying the expenses for yourself. 
M: and, um, so what if I am having difficulties that day and I need assistance when I get to the airport and my hotel room?
A: assistance in terms of getting into the hotel?
M: getting dressed
A: what kind of assistance
M: getting dressed, like last night my husband had to help me again. 
A: That is something that you can have your husband there, but we won’t be – we cannot pay for both, two people. We’re going to reimburse you for yourself, but if you want husband there, you can have your husband there. It is up to you. 
M: okay, I am going to have to give you a call back, is that ok? 
A: yep 
M: okay, thank you 
A: No problem – Line goes dead as I say goodbye – 
 M: buh-bye 
By the end of the conversation I was crying which is why I asked to call back, I was too upset to speak. The symptoms I experience are physical, leaving me with physical disabilities that vary from day to day. I am not sure how to manage for two nights in a hotel room without physical assistance. I don’t feel that it is appropriate for me to have to finance this trip for my husband to help with my daily requirements. All of our income goes to living expenses and medical expenses. 

Throughout the entirety of my disease process we’ve had to pay out of pocket at the Mayo Clinic in the United States, at a well respected Infectious Disease Specialist’s clinic in the United States and now at a very reputable clinic in Switzerland. The financial commitment we have put forth to regain my health has been enormous, but I also believes it illustrates I am taking every step I can to get well again to be able to contribute again in a meaningful way to the world around me. 

Pushing my body to the limits to rush to this appointment and then to turn around and travel again isn’t healthy for me. If these travel plans include a four hour drive to Thunder Bay on the 14th of August, then a two hour flight to Toronto, plus another hour to drive to Mississauga and back again that is two nights and three days of travel. If I arrive home on the 16th of August, it will leave me with one day at home on the 17th before we have to leave again. We fly out of Thunder Bay on August 19th, but have to travel to Thunder Bay the day prior on the 18th. That leaves one day; not four like (NAME) mentioned in our conversation. 

I am not trying to avoid this appointment; I welcome another doctor’s opinion on a complex case such as my own. The travel that it will take to get to this appointment will be hard on me, it will physically wear me down and to do so days before an international flight to see my team of doctors could make my symptoms worse by causing a flare up from the exhaustion. The travel and exhaustion will also lower my immune system before international travel; which is harmful when my immune system is still learning to fight on its own, making me more susceptible to contracting a virus during the back-to-back airport and airplane travel periods. 

Also, I would like inquire as to why I am being sent to another doctor, as this hasn’t been explained in detail to me. I made improvement under the care of my Infectious Disease Specialist in the United States and will continue to see improvement with my new team of doctors. I have only been under the care of my team in Switzerland for seven months and given the complexity of a disease process that has left me with tissue and neurological damage, the process to regain my health won’t take only a few months. As per the physician letters provided earlier this year, that have provided extensive detail regarding my current health condition, it is expected that it will take time to overcome this illness, but I do expect recovery. My family physician has been very involved and supportive throughout this unfortunate journey as well. 

My change in definition was in March of 2018 and it was not until July 27, 2018 that I’ve had any communication from my case manager; nearly four months has passed, but now it seems imperative that I see the third party doctor within the next two weeks. I don’t understand why there is suddenly a rush, especially since I have had no formal communication of any of the above noted concerns. 

I would like to please have information in writing, in regards to both the Change of Definition conclusions and the regarding the request to be seen by another doctor. Furthermore, I’d like to take this opportunity to ask for the following: 
1. A new case manager, I can’t continue to feel bullied and inconsequential by my case manager and would like to be reassigned. 
2. Please allow me to see the third party doctor after I return from seeing my medical team in Switzerland. 
3. Please allow to have my husband come with me to see the third party doctor so that he can continue to provide the physical care that I require, with his expenses paid. 

Thank you for your time, 
Sara Brunner 

The situation was resolved with respect. The staff member who I’ve dealt with regarding the complaint has made it possible for me to see the specialist after we return, and Stephen will come with me. 

So, after I told you this would be short and sweet–it turned out to be really, really long. We’ll be arriving home and then turning around to see this specialist and I am keeping my fingers crossed that he is open minded and receptive. I also imagine all the travel to and from Switzerland, then back out again will take its toll.  Everything leading up to this trip back to Paracelsus, and now this upcoming visit with the ID specialist has left me popping Ativan throughout the day while I try to keep up with everything and pack. Nothing has come easy this week, I had symptoms flare up that left my hand to look like there was a small plum looming beneath the surface because it was so swollen. My other arm was in lock down with an IV line in it for three days.  Today I am free of both, my symptoms subsided after this morning’s IV.  

This shows the swelling that happens in my wrists. On the left you can see my wrist is (mostly) normal, but on the right it is swollen so that my wrist is the size of my forearm.

The post My Decision To Go Back To Paracelsus For Lyme Disease Treatment appeared first on Soul Nutrition Consulting.

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Finally! I am so darn happy to finally get this last post up about my four weeks of Lyme Disease treatment at Paracelsus – which was now 8 months ago.  Originally, I’d hoped to have this all posted within a couple months of leaving Paracelsus but if you’re living this Lyme Life you know that things just don’t go as planned.

If you’re new around here and want to go back and catch up, I’ve linked to my earlier posts about Paracelsus below:

My decision to go to Paracelsus

My assessment at Paracelsus

Treatment – Week One

Treatment – Week Two, Part One

Treatment – Week Two, Part Two – including whole body hyperthermia

Treatment – Week Three, Part One

Treatment – Week Three, Part Two

Four Months after Paracelsus – An Update 

At the bottom of this blog post I’ll also be telling you what is next… a bit of an prelude to the next step we are taking in this journey, which is far from over but I am really confident things are moving in the right direction.

(the picture above was taken in Zurich the day before I left for home)

  Daily Journals Day 15

My last week at the clinic is finally here! Thank my lucky stars this is almost over! I realize I sound dramatic, but these last three weeks in the Lyme Life have just been crappy, and that is putting it lightly. I’ve never felt so many emotions–it’s been a roller coaster and there are times when I feel like I’m not buckled in and about to be tossed out to my demise. Okay–that last part might have been dramatic. 

Today I started with the pulsating magnetic field and the rest of the day was full of other therapies: a colonic, oxyvein and an infusion, deep oszillation and Schondorf therapy. I had another IRA-Therm session (the 1 hour hyperthermia) which I did alright through. Ever since the whole body hyperthermia session when it was one of the worst mental struggles I’ve dealt with, I am psyching myself out. 

The first 20 minutes of the IRA-Therm session flew by as usual… I slept, that’s the beauty of being so exhausted here: you can sleep through a lot of therapies! My nurse for this session was different, and really nice but less hands-on. The previous would put a new cold cloth on my head and give me sips of water every 3-4 minutes without me having to ask. This was different, I had to ask each time and felt bad for being annoying, but I asked anyway. Screw being more uncomfortable. I tried to tough it out and asked every 5-8 minutes instead. 

The other nurse also put the cold cloth on my face and wiped sweat away from my eyes, when you sweat so much it burns when it gets into your eyes, she also dried around my nose so that the oxygen prongs would stay put. The nurse today didn’t do either of these things, so for the last 10-15 minutes I was moving my hand out from under the cloth and foil sheet to push the prongs back up to my nose. Each movement was loud, sounding like crunching tin foil–so I was making all sorts of noise but she really didn’t seem to clue into what I was doing. And I felt too annoying to tell her otherwise. Overall it was OK this time, but I did ask to bring them temperature down sooner than it was supposed to be. 

During the previous session my temperature when up to 38.9C and the goal is 38.5C. I know from my earlier experiences that it was important my body not go higher than 38.5C. She wasn’t too keen on decreasing the temperature because I didn’t reach the goal yet, but I knew I’d keep warming up even after the intensity of the heat was turned down. My final temp was 38.3C and I am happy with it being a bit lower. I don’t want to wear myself down this week. 

My regular doctor was out sick today so I saw the naturopathic doctor who I’ve always really liked–super smart guy and he is American so we have no language barrier. This doctor seems to grasp the depth of my clinical background so doesn’t waste much time with the less important explanations, he dives right into the nitty gritties; with talks of enzymes, layers of the gut, etc. and I appreciate this so much, it makes me understand what they’re doing and why they’re doing it. Being left in the dark when it comes to this kind of stuff doesn’t work with me. Some people would rather not know, and just do as the doctor suggests–but not me. I want as much detail as possible. 

Today he had to make the choice of if I am now stable enough for surgery and the liver detox. He can be seen running throughout the Paracelsus buildings at any given time – to be more efficient he just skidded off to the dentists’ office (he is so quick “walking” isn’t the right word to use) and went to talk to the dentist about me having surgery. It is a go. 

They scheduled the surgery for Wednesday. When the Naturopath looked at my panoramic xray from December, it showed a sinus infection on one side. This makes sense given I had a head cold over Christmas. He wants to play it safe with the surgery so he is also going to to be to do neural therapy injections all week into my sinus cavities, and he added daily thyme infusions too, explaining that thyme is the most powerful herb for sinus infections, so I’ll be doing this for 20 minutes daily. 

thyme inhalation

He also changed the type of IVs for this week. I’ll be doing “up building” infusions instead of the detox and lyme infusions. The goal is for my last week is to to give my body all it can take to build up my immune system and strength as much as possible. We don’t want to give my body any additional reason to flare up. He noticed that my body is easily knocked off balance and I’m very sensitive to therapies. I couldn’t agree more. This surgery will be enough for my body to deal with and he doesn’t want me to leave Friday crawling out the door because I can’t walk. I can tell you I won’t be scooting along as fast as he does when I leave on Friday, but I will do a happy dance in my head on my last day out these doors. 

We got the last of my lab results. They hadn’t shown up in the computer, so he made some calls and finally got his hands on them. This last set of results were allergy tests and I am excited to tell you that I really don’t have any! I love food so much it would just be cruel to throw allergies into the mix. 

However, with that being said I did suspect suspicion one intolerance. A year after I was bitten and my symptoms were becoming unbearable and no one could diagnose and help me, I decided I needed to act on my own. In doing so I started an elimination-challenge diet so I was able to determine foods that trigger symptoms and I was successful at figuring out what my body would or would not tolerate. 

So, there is one allergy that came up positive and it was of no surprise. This isn’t an allergy per-say (as in celiac disease) to gluten but I can be sensitive and reactive to it. Because of this I to be cautious of it and avoid it when possible. This is nothing new for me. In 2015 I identified that gluten was a strong trigger for my symptoms to flare up. Thanks to my knowledge as a Registered Dietitian I was able to do a lot for myself to get through this the best I could, given in the circumstances. Would I turn down a delicious piece of dessert made with wheat and (of course) sugar? If you don’t know the answer, you don’t know me well. Dessert on special occasions or the odd Dairy Queen blizzard do happen. 

On a much more serious note the tests show I have mold exposure, and even worse is that some species are at toxic levels so it is important to deal with this. 

There are a couple of ways: 

One is through using a cholesterol-lowering medicine, often cholestyramine is prescribed. The mold binds to bile in our gut but then just gets reabsorbed again, so the idea is to take something that will make you excrete bile. I’ve asked to take the alternative medicine route for this and he’s given me three non-pharmaceutical meds for it. 

The new plan for this week will be the change my IVs, and we will also daily neural therapy directed to my intestines because of the inflammation, mold and Candida. We’ll continue the injections to my adrenals and add the sinus cavities. If you’re wondering how you reach the sinus cavity? The needle goes in and up through the mouth, not the cheek. 

Day 16 

I saw the same doctor again first thing this morning. We talked more about the alkalinity in my gut and there aren’t a heck of a lot of ways I can improve this. They’ve already prescribed some homeopathic meds, one thing I can do is consume more lactic acid-producing bacteria through foods and/or probiotics. These are the healthy bacteria we want in our gut. He suggested rechecking the pH level again in 6 months at home. The pH of my blood wasn’t done for some reason while I was here, but he suggested doing this at home rather than spending the money on it here. 

I asked about purchasing a laser light therapy device that clips onto the nose. Another patient has one and found it helpful; she doesn’t have Lyme Disease, but many people can benefit from the effects. He wasn’t able to objectively say if this would be effective or not, but he suggested a pulsating magnetic field device if I wanted to invest in something, as it can also help the body in many ways, and everyone can use it. I’m considering investing in one, especially because it can be very helpful for pain (not to mention healing) but they are roughly $3000CHF so it is something we’ll consider later down the road; I can always order it and have them ship it. I’ve checked online and didn’t find much for purchase and it is hard to know what the quality of the machine is so this seems like a decent price if we decided to purchase one. 

My other appointments today included the thyme oil inhalation. It is simple, all I did was hold a device in my mouth and breath while the essential oil was diffusing. It was STRONG, and I needed a few breaks. The rest of my day was typical: infusion, ozone, IHHT, local hyperthermia to my abdomen, a hot compress with yarrow and other herbs to my liver and a trigger point massage. I felt bad for the girl who did this–she did a great job but I could tell how hard she was pushing. It didn’t hurt me at all; my neck and shoulders feel like a sailor tied them into complicated, impossible knots and she likely needs a hand and arm massage now. 

Day 17 

Well, it happened… I made it to the dentist for surgery! Before it began, they drew quite a bit of blood so that they could remove the platelets.  Once the cavitations were open, they used the platelets to pack it before stitching it back up. They also took an extra vial to continue to monitor my white blood cell counts and inflammation markers. 

The dental work went the same as last time, lots of injections to freeze both the top and bottom… about eight needle pokes. At least after the first few you don’t feel the rest very much. The surgery didn’t hurt at all, but as always the sounds the instruments make are awful. The assistant did a good job distracting me too, she kept stabbing me with the suction from time to time. I dare to say she wasn’t the best assistant I’ve had in a dentist’s chair. 

After the dentist I saw my lead doctor for the medication orders and any last questions. One thing I’ve come to realize, and he was frank about this from the start of today’s appointment: there is a long way to go and it will be slow and I will continue to have ups and downs. The bright side is that at least I’m prepared for the long, bumpy road ahead… it is the path I’ve been on since 2014, so I’ve had time to adjust and get used to it. 

There has been one question other patients keep asking me this week…. keep in mind most people do two weeks of therapy at Paracelsus, so you interact with the same people regularly–and you may even see them at your hotel at night. They all know it is my 4th and final week and keep asking: 

“do you feel like treatments helped?” 

I don’t have the right answer to this question. 
I have nothing to compare it to. 
I’ve never been off antibiotics this long so I don’t know how I’d feel otherwise. 

How will I know if this new path in functional and natural medicine has worked? 

All we can do is watch and see how the next few months roll out and monitor any progress or fallbacks I have. There is nothing that we can fix overnight, or even fix easily. All I can do is be glad for the parts of my body that work are still working and not adding to my list of problems. As I write this, I realize that I need to be prepared for highs and lows at home. I’ve noticed now that when I’m not doing well, I get cranky. I try not to… but it is hard, and as a heads up to anyone who I come in contact with, if I am distant and disengaged I might be having a hard time and it’ll pass.   

Managing at home will be challenging. Unless you have enough disposable income to come back to the clinic a few times a year, there is a lot you need to do on your own. I will continue to take a lot of care in terms of what I eat and drink… more so than I already do; I am already strict on what foods I put in my body, except the ODD blizzard or dessert! 

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Three months after I get home I will reevaluate how I’m feeling, make adjustments and pay close attention. I think this also means I need to go back to a symptom journal, with details about supplements and meds too. Some of what they prescribed is for 1, 3, 6 or even 12 months. If I stop something at the third month and realize I felt a lot better when I was taking it–then I need to add it back. 

To get rid of heavy metals, I was hoping the doctor would give me an intensive plan to try six-to-nine months from now when I am stable enough. However, this is something that is much more specific to each individual and it takes trial and error. Ultimately, he wasn’t able to provide one–but he has given me some resources he likes to use so I can try to make these decisions for myself with the help of my family doctor to ensure my safety.

I asked about being able to discontinue lyrica and lamictal. He feels it is entirely possible and though nerves cells take 3-5 years to change over and heal, his prediction is that I might be able to get off these meds in the next 8-12 months… VERY SLOWLY. If I were to do Procaine infusions at home, they can be helpful in terms of managing and reducing pain and combating the systemic inflammation I’ve been battling the last 3 or 4 years. Some days it blows my mind that is has been going on for so long. 

He wrote instructions and even drew on me to illustrate the injection points for neural therapy so that we can continue these at home. He took pictures of the drawings on my skin to help my doctor find the correct injection sites. Another med he suggested that I start is low-dose naltrexone (LDN), this is something many people with Lyme take and it has helped a lot of people, so I’m crossing my fingers for the same. He wrote instructions for starting LDN and a titration schedule to reach the full dose. Another recommendation was to use a hyperbaric chamber if I can get access to one. 

Beyond the oral meds/supplements I’ll be doing infusions at home. One is a “Lyme infusion” and the other is a detox/high dose vitamin C. I’ll also be doing procaine infusions. If things go as he’s suggesting I will have infusions 1-2 times per week.

On Friday I will pick up everything from the pharmacy. When I did the order I only requested a small quantity of some things; many supplements are available in Canada or North America. Once I am home, I will search online and find the best price. 

suitcase of medication

Today was otherwise uneventful, except that I am in a lot of pain and am severely weak. I’ve been clinging to the handrails and using the elevator. My labs came back, and it turns out my WBC count went up even more overnight before they even did the dental work. It is clear my body is fighting hard while I’ve been here… either against some kind of bug or virus I picked up… or it is my body’s reaction to the therapies. I cross my fingers it’s the latter of the two. Hopefully I am stronger tomorrow and feeling a lot better. 

Other therapies today were oxyvein, an infusion, deep oszillization, magnetic field, thyme inhalation and PAP-IMI. 

Day 18 

I slept horribly, waking every 15 to 20 minutes in throughout the night with pain. Every adjustment I made would hurt enough to wake me up. I was so exhausted I must’ve looked like a zombie when I hauled my butt out of bed at 5:45AM, but getting out and being tired seemed better than laying there waiting until a more appropriate time to wake. 

My day at the clinic was scheduled to start late in the morning, I wanted to drop a post card off down the street (which is also a BIG hill) but knew I had no chance of getting up and down that hill with the condition my legs were in. Every step I’ve taken today has felt like my legs are made of jello and I’m uneasy on my feet. I’m not confident I won’t just collapse with my next move. 

The first appointment started with TANS… this is part of the heart rate monitor assessment I did in the beginning. I really like the man in charge of this part; he is so easy to talk to and you can feel his empathy. I expressed how I have a hard time prioritizing what I truly need to be doing and seem to never get things done. He pulled out a worksheet, and we filled out together.  It was based on emotions and triggers and from there I could identify the things that will “feed my soul” vs. the things I only think are important. 

Next I had ozone, but the nurse set up a lyme infusion set up instead. Earlier this week the doctor wanted to omit the Lyme infusion and stick to up-building infusions. She made a phone call and in the end continued to run it, but added anti-inflammatories. We started late due to the mix-up, which meant I was late for my next appointment. I rushed to the thyme inhalation then only had about 30 minutes to eat–this wouldn’t be an issue but I have meds that need to be taken 15 minutes before eating and my ability to eat is lame due to the dental surgery earlier. 

I ate what I could and rushed off to my dentist appointment for 1pm. After going to the appointment I wondered why it was even on my schedule? He looked in my mouth and seemed pleased with the work from the day before. Him and his dental assistant had started to speak in Swiss-German, so I tuned them out for a minute or two–then wondered what they were talking about. I paid attention and realized they were discussing his schedule for when I would come back to remove the stitches. I kindly interrupted them, saying that I leave in two days, so I would contact my dentist at home. This suited him fine – I grabbed his card to pass onto my dentist and that was the end of it. I could’ve had more time to eat after all. 

Of course after rushing to the dentist I now had spare time, so I stopped at the pharmacy. There is a small snack food selection and I still was feeling weak and shaky…  although I avoid sugar I figured it might help a bit to have a mini sugar high to propel me into the afternoon. I settled with cinnamon chocolate almonds.  

And who am I kidding? 

This was most likely an episode of emotional eating too. I’ve about had enough of all of this, which is an understatement. I can’t wait to be free of this. 

Next I had IHHT, I stayed awake and read. After finishing three books while I’ve been here I took the short train ride into St. Gallen on the weekend and went to the bookstore to grab a new novel in case I finished the last book I was reading. My purchase came in handy! I bought a super thick novel: Angles and Demons- it’s part of the Da Vinci’s Code series, and I am now over the first quarter of the book. It has been 3 days.    

My body feels heavy like lead and I still feel like a bag of garbage, ascending and descending through the building with the elevator because I couldn’t trust my legs again. I saw the Naturopathic Doctor and told him I felt like hell- I was up throughout the night in pain. It was running through my tendons and joints; like fire spewing rampantly inside of me and my skin even hurts, so I asked to forgo any neural therapy … I felt breakable. That sounds strange, but I can only describe it by saying it seemed as though one more poke would shatter me. He was great and had a nurse come in to do blood work right away and gave me a syringe full of some kind of homeopathic liquid to take then and every hour afterwards. I had to pop more Tylenol too. We canceled the next treatment that afternoon so I could go back and rest in the hotel… and pack. 

What kind of homeopathic liquid was it? 
I have no idea. I felt too weak to care and was willing to try anything at that point.  

My labs came back while I was still in his office. My WBCs are coming back down, but the inflammation markers are trending upwards again. I’ve gotten so used to this “cycling” that I could place bets on when the inflammation markers are going up, it is easy for me to tell now when there is systemic inflammation within my body. 

Day 19 

My last day! 

I had an early morning at the clinic, and needed to bring all of my luggage with me, which is a lot. My time away has added up to seven weeks, plus it is winter so not only do I have my fair share of luggage, I packed heavier, warm items like cozy sweaters.  I haven’t even picked my meds up from the pharmacy yet. My day started at the clinic at..

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Protein and energy bites are my favourite to-go snack.  I always have a batch in my freezer and I’ve been experimenting with different combinations for over a year now.  My favourites have been the Fruit and Nut Energy Bites and the Pumpkin Spice Energy Bites

All of my energy bite recipes are really easy to make – all you need is a blender or food processor. No baking required!

One servings of these bite size snacks is about 100 calories and carries 3g of healthy fat from hemp, chia and flax seeds.  These are all a source of ALA (alpha linoleic acid), which is an omega 3 fatty acid – and it is essential for the body to use in making the other two omega 3’s: DHA and EPA.

You’ll also find 3g of fiber in each serving, which is roughly 8.5 to 12% of our daily fiber needs (requirements range from about 25-35 grams per day).  Finally – you’ll get about 5g of protein as well.  All of this protein, fat and fiber make this snack pretty filling and it’ll keep you going when you’re on the run and need a quick, easy, healthy snack. 

Even better is that these are generally safe for everyone: they are gluten, dairy and nut free. 

This new batch uses vanilla protein power, but you can definitely make them without protein powder too – you’ll just want to add more oats, but I’ll explain that later on in the recipe!

Pumpkin Apple Spice Protein Bites

makes 32 ping-pong size balls

  • 15 figs
  • 1 cup applesauce (unsweetened)
  • 1 cup pumpkin puree (canned or homemade)
  • 1 ¾ cup oats
  • ½ cup ground flax seed
  • ¼ cup chia seed
  • ¼ cup hemp seed
  • 2 scoops vanilla protein powder (optional)
  • 2 teaspoon cinnamon
  • 1 teaspoon nutmeg
  1. Combine figs and applesauce in a blender or food processor and blend until you reach a mostly-smooth consistency
  2. Transfer fig-applesauce mixture to a bowl and add the remaining ingredients and mix well
  3. Roll into balls approximately the size of a ping pong ball

Protein powder is optional.  If you choose to go without it just add another 1/3 to 1/2 up of oats so that the mixture isn’t too sticky.  You can also add a dash of vanilla extract so that you still get the vanilla flavour.

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The post Pumpkin Apple Spice Protein Bites appeared first on Soul Nutrition Consulting.

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