I’ve recently been fuming over the lack of support I’ve gotten from family members while I’ve been dealing with Lyme (and everything leading up to diagnosis). I’m primarily talking about my mom and my aunt - though my aunt changed her tone with me when I got the Lyme diagnosis. Looking back at this, I remember being bitten by a tick around 10 years of age...I never told anybody because I didn’t know what it was nor was I ever asked if I had been bitten by one.
Just some background on Lyme diagnosis - I finally got a diagnosis last May (at 30 yo) immediately after seeing a new doctor. I had been shamed out of multiple doctors office and was told I’ve created. 1 - I knew deep down it was real because I’m pretty damn honest with myself but more importantly 2 - it damaged my ego as a scientist who approaches things very unbiasedly and open minded. I’m seeing the best doctors and they are telling me things are alright and they question me professionally. So I naturally questioned my sanity and convinced myself everything was fine. I carried this attitude with me for years before seeing the doctor that diagnosed me. I loss the ability to advocate for myself. She somehow figured it out within 10 min and me withholding information because I didn’t know if it was real. Did bloodwork and done, I have Lyme. Okay I’m rambling now but I think you get my mentality leading up to diagnosis.
Background with family - teenager I never felt quite right. I was very active but I was always battling fatigue, back aches and foot pain. Whenever I complained my mom told me everyone hurts and she feels like that all the time. She always has to win when it comes to someone’s pain. She would never take me seriously. She’d never take me to the doctor or do anything about my complaints. Growing up I was known as the complainer in the family. As an adult, I started going to doctors on my own and we found small problems one after another but never got a reason why. Even then my mom showed no empathy. Things got progressively worse and my mom acted like oh what now? That’s been her attitude through this. My aunt shared the same attitude. After seeing some horrible vile doctors she didn’t have my back. I hold her partially responsible for never stepping in to make sure I was well taken care of nor demanding answers. She can’t c
Bottom line: my mom doesn’t take my diagnosis seriously even though I’ve educated her. What resources should I send her way so she can understand better? Informational won’t do it for because I’ve educated her myself and I know she trusts me as a scientist. I was thinking the memoirs from Yolanda Hadid and Ally Hilfiger. What do you guys think? What do you recommended?
So I went to a place that does IV nutrition, and I got a lot of vitamin C along with B vitamins and glutathione. It's been awhile since I've had nutrients through IV. First I'm just wondering if these nutrients can cause a herx considering there was no antibiotics. Also, the biggest symptom I have is that I just feel very disoriented like I'm not sure what's going on, it's like things aren't right but I can't tell what's happening, and I feel a little bit of panic. Does this sound like a Herx and is there anything I can do about it now?
I have been following a Lyme diet for more than a year now, with no sugar and no yeast. Was in remission but had a nasty relapse maybe a month or so ago.
Now maybe three or four times a week I will get tingling in my limbs a headache and maybe some dizziness about 5-10 minutes after I eat. I have tried cutting out the other usual suspects that give some people with Lyme problems like gluten and dairy with no success. (I just had literally sausage — and only sausage — for dinner and am having the flair up of symptoms I laid out as I type this.)
Does anyone else experience this? My gut symptoms have been acting up for a good while, too. My LLMD has me back on the really aggressive regimen of antibiotics/herbs that he used when I began my treatment in the first place after I went to him with this issue.
Unfortunately reality seems to be setting in that this is a chronic thing for me unless progress is made in medicine. I'm living alone in a new city doing a summer internship and am struggling just to make it through the days for the first time in a while. This new thing after I eat has just made it worse.
I'm about half way through my 28 day course of Doxy (for Lyme). I have yet to be outside for more than a few minutes because I'm scared of what the sun will do to me. I'm not looking to sunbathe, I just want to be outside more. Does sunblock help or is it completely useless in this situation? What are your experiences with Doxy and sun exposure? TIA.