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Lyme Disease Message Board


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Hi...

Yes, I understand your worries, though I do think your MRI would have picked up any type of mass, which it sounds like it didn't, so that's good. I too went through so many tests, EMG/NVC (like you...so much twitching everywhere - which I still have), MRI's everywhere, bloodwork, cardiac workup (also have tons of palps), etc.

My Igenex results sound similar to yours for Lyme though my co-infections were positive all over the place. My Lyme Western Blot was IGM + 34, 41(++), and IND for 31 and 39; my IGG was ++ 41 and IND 34 and 39. My LLMD says that 34 is so specific to Lyme - there's no other cause to make this positive on my IGM, along with my IND on 31 & 39 - also completely specific to Lyme....I guess this, along with my laundry list of symptoms, and the fact that I tested IGM + for Babesia Ducani, Ehrlichiosis and Bartonella made Lyme and company a pretty clear diagnosis.

I have seen 3 different docs who are at least somewhat Lyme literate and all say this is my beast; I certainly sport a ton of the symptoms, nothing else has been found, so I am treating. I still wonder sometimes as my response to treatment as far as improvement is not great. My current LLMD tells me this will take a long time, as much as 2-3 years of treatment (or more) as I have so many co-infections and was infected for almost 3 years prior to diagnosis. It is completely in my central nervous system...I may have to go on IV in the next 6 months or so if I don't start seeing better progress. From what I read, that certainly doesn't guarantee improvement either, but it might be worth a try. I figure, what are my options here?

My 80 year old father, who was on the same back country, brush busting hiking trip that I was several years ago, also had unexplained health struggles. Once I tested + for Lyme and company, he got tested. He tested + for Lyme (similar WB results as mine) and for Babesia....I guess at this point I am looking at the odds of whether we have it or not....living in a very NON endemic area (so they say, ha)....I have concluded that our diagnosis is correct.

I totally agree that you should rule out everything you can. Just hearing your symptoms and results sounds pretty suspicious for Lyme (my understanding...band 31 and 34 are specific to Lyme). It wasn't clear to me, were you tested for coinfections? It is unfortunate that the testing is not more accurate. I, like you, went through my doubts and disbelief, still do actually....but what else is it then? I feel like there hardly hasn't been a Lyme symptom, when I read them, that I haven't experienced at one time or another. Do your symptoms wax and wane? My biggest complaint is my entire nervous system feels plugged in to an electrical outlet, hyped up, vibratory....I don't know how else to explain it; I hate it. I can deal with a numb tongue, numb feet, twitching, off-balance/dizzy....but the plugged in feeling is exhausting and miserable. I don't like the heart palps either, they kind of freak me out.

Please keep me posted on your progress and your next tests. I have not re-tested since starting treatment, except for mycoplasma a couple of months ago, that came back +. I may want to redo the WB sometime in the future....though with all my crazy symptoms, I think continued tx is the best approach at this point.

Sorry to be so lengthy....I just totally understand what you're going through, not fun. I hope you get answers or at least feel comfortable that you're on the right track (I really think you are). Good luck to you. Monarog





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