Hi everyone, my thyroid specialist thinks I have Lyme. Was diagnosed with Fibro a couple years ago. Tried to just live with it. Things are much worse.
I’m going to try and not make this a novel. So thyroid dr thinks I have Lyme. He’s brilliant, I pay out of pocket for him. If it wasn’t over 500 miles I would have him handle this. I have a new fibro dr would need to treat. So far she’s been great. She sent a lab order to lab Corp for western blot.
I’m sure everyone here is cringing. So what happens is they changed it to where they do an antibody test w/reflex. Since the antibody came back negative they don’t run the western blot.
So now I’m looking at igenex. I’m waiting for the fibro office to get back with me. Is Igenex who I need to go with? I have Medicare and was told they cover it unless CD57 is requested. CD57 isn’t covered. I would need to have lyme with coinfections ran. Has anyone with Medicare done this and know if I’m going to end up with say a 20% bill? I have no independent labs so I have to see if the nurse in my drs office will draw the blood. They don’t tend to do that there but might be able to. No independent labs are near me. I understand it’s approximately 80%correct test there’s no 100%. Things I may need to know? And a quick note this would be I guess chronic long term lyme. I’m also allergic to doxycycline mainly used to treat this.
I’ll try making it a brief history (as much as possible). Numerous health issues: Graves’ disease (thyroid removal), Addison’s/adrenal disease, Anxiety Attacks/panic/ptsd/depression (managed by meds from psychiatrist), Fibromyalgia, chronic bronchitis (asthma when it acts up), chronic pain, joint pain, anemia (stabilized), heart murmur (I’m sure tons more my foggy brain is forgetting)
We have my thyroid and adrenals stablized. Despite that things have gotten worse. We’re looking at initial infection without a rash would have been 2000-2008. I spent a lot of time in Illinois forest preserves and up in Wisconsin it could have been before that. I’m not in that area anymore. Since I was sick over and over I can’t say an exact date. Never noticed a bullseye rash. It’s not like I was constantly healthy and it would stand out. 2005 a heart murmur came out of nowhere. Life was triple stressful and was told it was from Graves’ disease. Tried for remission but after years got nowhere. I started getting sicker. I had it surgically removed. Took forever to get the thyroid adrenal figured out. I had other health issues hitting. After all is said and done I end up disabled. I’ve been exposed to toxic mold for a couple years at a time. It’s been cleaned up. The dr did run a blood test for that mold and the toxic mold did not show up in my blood. CBC has been ran only creatine a bit low. Lupus negative, arthitis test in range, Epstein Barr negative, Iron finally not low. What we did find was D was 26. I was taking 10000 iu a day. So now I’m on 50,000 D3 a week to raise it and I take it with food.
So it takes forever but find a great thyroid dr. He handles my adrenals too. That was a bumpy ugly road. My body doesn’t like converting t4 to t3. My body also now rejects generic synthroid. We found a small amount of naturethroid and primarily T3 get me by. I had like 2 good weeks then my body crashed and burned. My normal fibro flares last 2 to 4 weeks, it had been a good 8 months. January hit and it has been nonstop. I do have insomnia and my sleep right now is just off but that being said I sleep 12+ hours a day. It’s really odd for me because during the the graves issues I slept 3-4 hours with very little rem for approx 10 years. We start messing with thyroid meds and finally sleep. As things have gone on my thyroid will convert very little T4 to t3. That’s why I’m on the thyroid meds I’m on. My chronic pain had doubled so I have gone to a fibro specialist. Her first concern is Lyme. I’ve got tons of symptoms so it’s not really a stretch. Over all this time for years I have been constantly on and off antibiotics. It’s been less in the last 8 months. I have extremely odd and excessive medication side effects and can’t take any mood regulators due to that. So between chronic pain, extreme exhaustion and horrid foot pain life has been rough. Tons of other things but I would prefer no one go blind.
I started probiotics from Now. I’m trying to eat some (I don’t tend to have hunger) and stay closer to healthy. We just got one med helping that hopefully i can go back to cooking. I keep my sugar and carbs lower but if I’m able to cook low carb that would be great. I’ve started researching this. Been reading through the pinned information.
Thanks for any and all suggestions or help. I really appreciate it. I know it ended up long