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.
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.
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
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.
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.
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.
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
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?
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?
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?
M: okay, thank you
A: No problem – Line goes dead as I say goodbye –
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,
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.
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:
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)
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.
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.
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.
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.
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.
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 7:30 this morning with oxyvein and an infusion.
I asked which infusion it was and she told me it was..
I often start by apologizing, and I shouldn’t but here I am appologizing again. I said I would try to get my Paracelsus treatment diaries out a lot sooner than has happened. There are about four blogs left to edit and post, which means this blog your reading right now is out of order–but there have been a couple significant days I wanted to talk about and reflect on.
My intention had been to write a post like this in April as an “anniversary”, which isn’t the word I’d like to use but it seems to be the only one that fits. April is significant for me–and now I think of it… so was March as they all have important days that have played a big role in where I am today.
The Bite that Changed My Life
April 28, 2014–while getting ready for work my husband noticed a bite mark on my shoulder near my armpit, it looked angry and red. It concerned him. My husband had knowledge of Lyme Disease long before it took over our lives… his family is from Switzerland where Lyme has long been acknowledged and treated for decades–his cousin and grandmother have both had it. He strongly urged me to go to the clinic, so I went to see a nurse practitioner. She thought I had a spider bite. I knew nothing about Lyme Disease and didn’t realize by walking out of the office with only ointment that my life would change in a way I’d never have imagined possible.
March 3, 2016—my lab work returned from Igenex and my local family doctor called me with the results. I tested positive for Lyme Disease; the IgG and IgM both had positive bands: one was positive according to CDC guidelines, and the other was equivocal. That wasn’t all, I also tested postitive for Bartonella.
The Path of Lyme Disease Treatment
March 16, 2016—we travelled 1700km to Washington DC to the Jemsek Clinic. This was the first step in the path toward treating the infection and healing. I knew I was sick, I mean–you have to realize something is seriously wrong when your 29 years old and can’t walk on your own or brush your teeth. After a long assessment Dr. J took a breath, exhaled, and looked me in the eyes and said
“You are very sick. Most people aren’t this sick by the time they get to me.”
This was a sobering moment. Everything all suddenly felt very real. It started to feel like the exam room was shrinking around me. We talked about my options and they suggested IV antibiotics instead of only oral antibiotics due to the extent of the infection. Soon June will carry another significant day. On June 6th 2016 I had an IV central line placed in my chest where it would remain for the next 506 days while I fought my way through the worst days imaginable. Many of those days I wondered if I would ever live a normal life again I wondered if a day would come that I wouldn’t wake up.
We went to the zoo during my first trip to DC for my LLMD appointment
My Lyme Journey
Going back to the start of this post when I apologized for putting things out of order I also wanted to give an update now that I’ve been back from my four weeks of treatment at Paracelsus in Switzerland in January 2018.
I spent January in Switzerland at an out-patient clinic called Paracelsus. Daily therapies were exhausting, and I had setbacks while I was there. I am no longer on antibiotics, Paracelsus is a biological medicine clinic, so much of my medication now is homeopathic.
The first and most important thing to say is that going to Paracelsus is only the first step in this new biological medicine direction of treating Lyme Disease. Their therapies weren’t a one stop shop intended to cure me. There is still no prognosis for me. We have no idea how long it will take for my nervous system and the rest of my body to fight the infection and heal from the damage it caused. Although I don’t regret my decision to go with the traditional route of antibiotics, taking them for so long also did a lot of damage to my body and it needs time to heal.
After returning from Paracelsus I had a big med schedule, and when I say big, I mean ridiculous: I took meds 12 times per day. My med schedule was so regimented that I had to plan when to eat because some meds needed to be on an empty stomach while others needed to be taken before, with, and after meals.
The kicker was that I continued to become more symptomatic again, I became terrified and paralyzed with fear over the last few months. I was getting reoccurring fevers, uncontrolled body and bone pain, joint pain and inflammation, weakness and needing help to sit up, stand up and walk. It was happening all over again. I wondered if I made the wrong choice to go to Paracelsus and stop antibiotics.
I’ve kept in contact with the doctor at Paracelsus. In fact, due to things getting worse we have monthly appointments so he can help keep on top it all while we work together to move past this and go forward. With all of the symptoms re-emerging he had me stop most my meds to see if there was an improvement. I continued to get worse.
The reason we stopped the meds is because he thought my body was under too much stress, we had done a lot, and were continuing to do a lot to it. My body needed to recover again. It turns out we have to move a lot slower with treating the infection and healing my body–and treatment needs to come in layers: first is repairing my gut and immune system so that my body can fight for itself. Once that is under control we can move onto detoxing heavy metals and mold. If I do those things right now, according to the doctor in Switzerland I may end up hospitalized. My body wouldn’t handle it.
The words “too sensitive” keeps getting used. Of course I want to say:
“I am NOT sensitive,”
In my head I hear “you’re too weak”.
I’d love to throw the book at this disease and do everything all at once and get it over with. That is not the reality. It would be dangerous. The word ‘sensitive’ also brings feelings that aren’t intended by the word–but its the way my brain is wired, and I am trying to work through these feelings. Sensitive does not mean I am weak or inadequate. Sensitive means listening to my body, treating it as kindly as I can and taking time to allow it to heal, fight and recover. This is something I have to remind myself of daily.
Oral meds aren’t the only part of my treatment plan from Paracelsus, I do weekly IVs, alternating between a Lyme infusion that contains antiviral and antibacterial homeopathic meds. The infusions also contain a handful of other supporting vitamins, minerals and other homeopathics. I finally started the IVs in March.
click the caption below to watch a video of how my IVs are mixed
One of the other meds they’ve prescribed is LDN (low dose naltrexone)–which needed to start at a very small dose and titrate up over a four weeks to the full dose. By March I finally reached that dose, and in theory LDN is supposed to help with pain, inflammation and regulating my immune system
Through March I still continued to get worse. I felt like a shell of a human, some days I was so emotional I just cried. A lot. Uncontrolled. This was hell for me, I hate to cry–and its something I need to allow myself to do more often. If I am being truly honest, I have to say most days I woke up and went to sleep feeling hallow and hopeless.
Another thing that happened in March has to do with my long term disability claim. In 2016 I applied for it through my insurance plan from work. My claim was initially denied, on the grounds that my symptoms weren’t disabling enough to stop me from working…. If you put a hidden camera in our house, it would shock you. If being carried or pushed in a wheelchair because I couldn’t walk wasn’t enough, I also had IVs daily–sometimes twice daily, and those often made me so violently sick I cried from viciously puking my guts out. But hey- that isn’t disabling, right?
I fought their denial and sent an appeal to the insurance company. Eventually they approved my claim, but it took a year to get approved, and when it did it was on a two year condition. After two years I would be re-assessed and in March my re-assessment happened.
An independent consultant hired by my insurance company came to our house. We talked about my story from the very beginning. Everything was rehashed. All the ugly stuff, all the pain and despair–all of it–we had to talk about it. The interview took nearly three hours, and it took all I had to get through it, physically and emotionally. Near the end I wasn’t able to tell my story without crying. We needed to stop twice for me to collect myself. The consultant was kind, and I think he saw that I reached my limit–he mentioned that he could tell this was hard for me and that I’m normally very “collected”. Through my tears all I could manage to keep saying was,
“Sorry. I never cry. I’m not a crier,”
Somewhere over my last 30-odd years I convinced myself crying must equal weakness and I’ve always worked hard not to show emotion. If I’m less emotionally attached, there is less chance of hurt or disappointment. These layers of false beliefs seem to run deep within me and I’m working at breaking through–but it is much easier said than done.
We’re into May now and it has been two months since that assessment and I haven’t had a response from my insurance company yet. The assessment was to determine if I can return to any job, not my own job. I have no idea what to expect. This is another weight on my shoulders and I hope there is understanding and compassion involved as they review my case and approve another year or two to allow me to fight and heal from this disease. My monthly disability cheques aren’t very much but they are still a necessity and I don’t want to gather up the energy to fight a denial again. Being denied disability isn’t just a loss for myself–its a loss to everyone who isn’t able to work because they are fighting this disease, and I am fighting for them as much as myself.
Finally April rolled around, and I was seeing some improvements, which I credit to starting the weekly IVs and reaching my full dose of LDN. I had a stretch of awful days still, requiring full assistance to move–but I also had a 6 day stretch of relatively pain free days which was amazing. Symptoms seem to go in cycles now, good days mixed with mediocre days, but still some really awful ones.
I still spend days in bed but Elliot always keeps me company
My level of exhaustion is through the roof. After discussing a few other symptoms and changes these last couple of months with my doctor in Switzerland we came to a conclusion:
An endocrine crisis.
The endocrine system is made up of the thyroid, parathyroid, thymus, adrenal glands, pituitary gland, hypothalamus, pineal glad, pancreas, and in my case, ovaries. To simply state it, the job of the endocrine system is to secrete hormones that control the functions of cells, tissues and organs.
For more on the endocrine system you can click on this link to read more about its role in the body.
So what is our plan?
We’re waiting. I continued on minimal meds to allow my body time to recover. I have homeopathic meds in my IVs that influence my adrenal and thyroid glands, and I’ve also recently started weekly neural therapy (you can read about them here in my previous blog posts). We do the injections over my liver, intestines and adrenal glands.
In terms of the effectiveness of the neural therapy it is too soon to tell–but the last two times I’ve had injections, the next day I’m exhausted, but then the following 2-3 days I have more energy than I’ve had in years.
Next week I speak with the doctor in Switzerland again. I am hoping I can slowly reintroduce the meds I brought home from Paracelsus. I would like to start fighting again, but I have to be patient and trust that they’re making the right choices for me.
The Big Questions
“How are you doing since going to Paracelsus?”
Up and down. I have good days, functional days and awful days.
It is too soon to tell how I am progressing.
Some days I don’t know if I am going backwards
Other days it seems like I’ve moved mountains
“Will you go back?”
Maybe. It depends how I get through the next 4-5 months while in contact with my doctor from Paracelsus. If I can continue to feel like I’m moving mountains from time to time, then yes. I probably will.
“Was it worth the money?”
I have certain opinions about Paracelsus, but overall I am glad I went. The doctor who I continue to be in contact with is the reason I would go again, I have a lot of trust in him. He has a brilliant mind.
In upcoming blog posts I talk more about the frustrations I experienced while I was there.
The investigations they did were extensive and I’ve learnt a lot about the short-comings and issues within my body. I’ve said before the testing was the best value that came from my time at Paracelsus.
For now I continue to be patient and try to accept this “wait and see” approach.
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Okay so let’s be real. Most of us enjoy ice cream, right? The downside is that ice cream and other desserts usually contain a lot of sugar. We know the average North American consumes more sugar than we should. In fact, three years ago the World Health Organization (WHO) placed a daily maximum recommendation on the amount of sugar we should eat. It isn’t only the WHO that has been focusing on sugar reduction; even groups like The World Cancer Research Fund International have a publication aimed at decreasing global sugar consumption. Too much sugar really isn’t healthy, according to a paper by the British Dietetic Association the way our liver metabolizes high intakes of sugar can have a negative effect on our health, so it really is important not to over-do it.
When it comes to sugar there are two kinds:
1) natural sugar
(contained in foods such as fruit)
2) added sugar
(found in processed foods, but don’t be fooled – it can even be added to things we think are healthy!)
It doesn’t matter where the sugar comes from, our body uses it the same. The difference is that foods that contain natural sugar also come with nutrients and fiber.
For some of us it is hard not to over-do it when it comes to sugar.
I have a sweet tooth and know what it is like; if it came to a bag of chips or a bar of chocolate? The chocolate would win, every time. This is why I came up with this “ice cream” cake. It is free from nuts so it’s allergy-friendly, and it wouldn’t be complete without hidden nutrients that help boost its vitamin and mineral content, plus bump the fiber up a little. In developing this recipe, I also made a nutty version for the peanut and almond butter lovers out there!
You can make this in individual servings like I did (using ramekin bowls or mini-cheesecake pans) or as a larger dessert by multiplying the recipe by eight and using a seven inch spring form pan. My favourite part about this dessert is the topping. When I was a kid I LOVED chocolate dipped cones, or getting to put the chocolate sauce that hardens onto my ice cream. This topping uses coconut oil so it quickly hardens when you drizzle it – making this a good dessert-tribute to my childhood memories.
No Sugar, Vegan, Nut-Free Ice Cream Cake
Gluten free, sugar free, vegan and nut free!
1 tsp coconut oil
4 tbsp coconut flour or almond meal
splash of vanilla
1 frozen banana (mashed well)
1 tbsp cooked (mashed sweet potato)
1 tbsp cooked (mashed cauliflower)
1 tsp tahini or nut butter of your choice (heaping)
1.5 tsp coconut oil
1 tsp coco powder (unsweetened)
If you want a bit of crunch you can add things like shredded coconut, slivered almonds, crushed peanuts or hemp seeds to the ice cream layer.
If you are using a ramekin bowl, line it with wax paper. If you’re using the spring form pan there is no need to line it.
Mix the ingredients for the crust and evenly distribute it on the bottom of the bowl or pan
Mix the ingredients for the ice cream layer until smooth (it can be done with a blender, food processor or even a fork). If you chose to use add-ins, once the ice cream is mixed, stir in the add-ins of your choice
Layer the ice cream mix on top of the crust and smooth it out so it is even across the top
Put in the freezer for at least 2 hours (it can sit in the freezer for a couple of days if you want to prep it ahead of time)
When it is time to serve the ice cream cake remove it from the bowl or pan and discard the wax paper.
Prepare the topping and drizzle it on the ice cream cake
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