I was in Tx when my Lyme became really bad and in the San Antonio area there was no LLMD and maybe 2 else where but I was too ill to drive.
You most definitely have Lyme. I was misdiagnosed with MS among other illnesses since Lyme symptoms can be very similar. Especially lesions on the brain that I had. Please don't ever take steroids. I wound up in the hospital on a respirator. Mine was an extreme reaction but they aren't good for lymies.
I would get the Lyme and co-infection panel. My co-infection tests showed positive only for Bart's but I had 2 more infections that my LLMD treated based on symptoms alone. You can read Burascano's treatment guidelines on ILADS.org which explains symptoms of co-infections. If you have Medicare, that will pay for IgeneX tests.
Band 39 is highly indicative of Lyme Disease. I think you're doing the right thing to pursue this.
I did the whole Lyme panel at IGeneX, and only the IgM came up IGeneX positive, but still CDC negative. I had 2 Lyme specific antibodies that the CDC ignores, but that was enough for my LLMD to diagnose me.
If cost is a concern, I recommend the Western Blot as the first choice. It is more likely to find signs of Lyme if you have it than the other tests. A PCR is definitive if it's positive, but it is more frequently false negative than a Western Blot.
If your Western Blot comes back negative, you could still have Lyme, especially since you've been sick such a long time. My doc says it's their sickest patients who test completely negative, as their immune system isn't fighting back anymore. In this case, get to a good LLMD who will do an antibiotic challenge. That's where you take some antibiotics for a while, which start killing some of the bacteria. The immune system takes note of these dead bugs hitting the bloodstream and starts making antibodies again. Then, you retest.
You might indeed have to go out of state to get treated properly. It seems from those who've posted their experience that TX is particularly harsh on doctors who diagnose or treat beyond the IDSA Lyme guidelines. But you might find a sympathetic doc who will at least get you started on some Doxy and then retest you if the first round is negative.
I commend you for taking this on. I think there's a very real possibility you have Lyme and if so, you'll only get better if you find a good LLMD.
Thanks for answering! I suspect I have Lyme, my sister has Lyme, we grew up same area, only she never left Mass. She has been reinfected 3 times. Sigh. She recently, well in last 2 years, got some treatment in NYC and in VA and feels so much better!
No wonder I feel just awful when I take steroids. I thought it might have something to do with it. I take IVIG as a treatment for MS, thank goodness. But since I get bad IVIG flu after the treatment, Dr gave me dexamethasone to knock back the symptoms. It works great but just delays the headache a few days and then I feel awful for a couple weeks.
If I just roll with the IVIG flu and tough it out, its over after 72 hours and I get almost 6 excellent weeks of good energy and rather decent life. I am not doing the dexamethasone again. I have learned my lesson.
Also when first diagnosed they give me 4 days of IV steroids and I felt worse for months, and folks with MS are supposed to feel way better. Not me. Ugh. All this is part of why I am pretty sure its lyme, not MS.
But after having Lyme for at least 25 years, I am not so sure there is any good treatment for me. I hope I am wrong. I would like some life back.
I read Dr Burrascano's guidelines but brain fog keeps me from "getting it." So I am asking y'all for clarification on what to order for tests. Takes forever to push new info into my brain so it sticks.
As do all who visit here I am very very sure. Its ***** being sick all the time.
I have been sick over 20 years too. Don't give up. I went from not walking to walking with a cane to no cane. You can do it.
I was born in Ma, got bit in Va and know tons of people like us. Long time sick but getting better. My pharmacist's friend spent 20 years in a wheelchair with "MS" she recently found out it was really Lyme and she is walking now.
We are here to help.
Thank you for answering and weighing in with your ideas, Ricobord. Takes me a while to digest everything as my mind skips around and I have to force it to read all then think about it. :)
The PCR test. What is actual name of it? Maybe its one I can get done locally and save some money? I have a place online where I can order my own lab tests so if this is a regular test perhaps I can order it for myself.
I am sure I have had this since 1988 at the latest, perhaps before, but weird stuff started happing in 88. Since then, every time I get into a very high stress situation, I "relapse" so to speak, with the biggie being at the time I was diagnosed with BC. I was almost fine until they did the biopsies. Then it flared up and left me basically crippled.
I am thinking the biopsies churned up the little bugs into overdrive. Then they got into my brain and started taking it down.
I am better now after 5 years, but still have trouble with joints and tendons and vertigo and stamina. As for MS, well, they haven't found a causitive or infectious agent to speak of, so it is a catch all for the symptoms. The MS drugs are immunosuppressive, except the one I take, IVIG, which is a full immune system replacement. I like it and it keeps me from getting worse.
I want to know what is causing this problem so I suspect Lyme. I'll run off to IGenex and see if I can understand what tests to order.
I am hoping we sell our big house pretty soon, as we have a bundle of equity in it. That will probably be my treatment money. So am in a holding pattern until then.
Thanks so much for your encouragement. I am bouncing between being despondent and slightly hopeful. After being sick for so long, and everyone around me happy with MS diagnosis (except me,) its hard to keep holding my chin up and focusing on finding the cause.
I am sure y'all have gone through the full range of emotions as well. I just want some life back to enjoy my retirement, NOT in a wheelchair, or rest home.
So thanks Mojogal. I sure needed to hear you say these hopeful things.