Chronic Lyme Dx Questions

Discussion in 'Lyme Disease Archives' started by kyra07, Jul 7, 2008.

  1. kyra07

    kyra07 New Member

    Besides CFIDS/FMS diagnosis last year, additional autoimmune related syndromes keep getting added to my list. I'm on yet another round of doctor visits to explain my dizziness (abnormal VNG, so now an MRI) and insane rashes (skin biopsy), my meds just got changed around yet again and am frustrated. :(

    I had Stage 3 Lyme back in 1991. I was severely ill when I was finally diagnosed. I had the amnesia, hallucinations, vertigo, strange sensations, lyme migranes, pain, fatigue, palpitations, insomnia, nasuae, etc, etc, etc. I went on 4 or 6 weeks of Rosephin, then 2 abx at a time for the next 16-24 months (can't remember now, but over a year). I was a teenager still and in college by the end of my treatment, so I know I didn't take my abx like I should have. So let's say, I got by ok, just in more pain than others and hypersensive to everything.

    I've had mono, walking pnuemonia, chronic bronchitis, strange allergic reactions, etc since then. Always maxing out on my sick days, but seem to do the impossible amount of work and dance every other day. After many years of inquiry (why am I so tired? always sick? i'm not quite right...), I couldn't ush myself any longer and crashed. Then finally a dx of CFIDS/FM last summer. I have been on 2 rounds of doxy (1 month each) in the past 6 months, both times I herxed then felt really good afterwards. I mean, really good: I am back to spinning classes which I haven't done in 2 years (when vertigo is under control). I slowly decline after I go off.

    As I am approaching my MRI apt and thinking about the doxy, I'm begining to think maybe chronic lyme is the culprit here all along.

    Sorry for the long background! Essentially, my questions are: Anyone similar to me? How did you get a dx of Chronic Lyme Disease? What tests did they do? How are they treating your CLD? Is it the same doc that treated your initial infection? How are you doing?

    I've been searching the web, but my brain fog is too fierce (thank you vertigo!) to put much sense to it right now... :(

    Many thanks for your generous advice! Again, sorry for the long post!
  2. victoria

    victoria New Member

    My son did not experience anything quite as severe but he was getting pretty bad before we caught in 2005... many others with your symptoms tho. I would go to a good LLMD as s/he will look at your whole clinical picture and help determine whether it's lyme and/or other tickborn infections.

    I'lll bump up the list I started of places to go, but one of the best places to go to find a doctor is
    go to the 2nd heading and post for your area;

    people can respond to you privately with doctors' names and also if necessary, tell you who to avoid. This is of course important due to the politicizing of treating chronic Lyme and the subsequent persecution of doctors and the IDSA's current position that tertiary/late stage lyme is very rare...

    It saved us a significant amount of $$ and more importantly, TIME, as otherwise we'd have fooled around our nearest local metro area (Atlanta) where there are no good LLMDs. We had to go out of state and still do.

    Sorry, I can't reply more, but I'm on the cusp of a huge move - about 2,000 miles... it's getting frantic around here as we're leaving Friday!

    all the best,

    [This Message was Edited on 07/07/2008]
  3. kyra07

    kyra07 New Member

    Yes, I will check out the listing for a LLMD here in the area, even if I have to head upstate some. Thank you for the link and bumping the post.

    When I asked one of my docs about it, he doesn't want to label me as CLD in case I need disability. And there is no way to tell what is CFIDS/FM or CLD minus getting tissue samples from my organs to see if those bloody spirochetes are hanging out in the tissue, which can't happen.

    I'm hoping the neurologist I'll be seeing (I don't know who yet) with my MRI results will have an understanding of Lyme. We're expecting to see some lesions due to my VNG results, but read that MS and Lyme have similar lesions. I don't want to get diagnosed with MS when it really could be CLD! I think a LLMD neurologist is essential to interpret my MRI, which I just read on the Columbia University's website that it's one of the tests recommended to determine if you have CLD.

    I extensively researched Lyme when I was sick in 1991-1993. It seems treatment and attitude towards this illness hasn't changed, alas. I was treated with 2 abx at a time over a 1-2 year period. I was told there was no "cure," but after my symptoms went mostly away I was told I was "Lyme free" as my blood work came back negative for Lyme at that time. Lingering symptoms were deemed as permanent damage or would just fade with time. Some symptoms I still have from 15 years ago, they come and go. But I know the spirochetes and abx damaged my body. Years to recover just from the abx alone. A big part of me is hoping that it isn't CLD and that I don't have to go down that road again.

    In the end, I don't care what label they give me. I just want to feel better than I do now. You know?

    Thank you both for sharing your story and posts!

    Victoria, good luck with the move! I did a 3000 mile move twice in my life so far: hang in there!

  4. ScottInCalifornia82

    ScottInCalifornia82 New Member

    I also contracted Lyme in 1991. I had Bells Palsy (I am not sure if that is stage 2 or 3) and was lucky enough to be test positive and received 6 weeks of doxy.

    I was fine for a few years but then developed symptoms that gradually worsened until today. I plan on seeing an LLMD very soon to evauluate the possibility I am still infected and/or have coinfections.

    Many many people have a similiar story. My advice to you would be to get on They have a very active discussion board and a separate section for seeking an LLMD. I would definitely recommend doing so ASAP.