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Diagnosing Lyme (For Those Who Have Been Tested Or Diagnosed)


misstraci

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Chronic Lyme disease is super hard to test for. Tons of false negatives with the ELISA and western blot. Read Diagnosis Unknown, the Lyme epidemic ( can't think of the author). This book explains how misunderstood, misdiagnosed, and mistreated lymes disease is, and specific tests to do to diagnose it. So infuriating how political healthcare is! Anyone with a chronic disease that is difficult to diagnose (POTS, OI, etc) will get fired up reading this book!

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misstraci,

I finally was treated for Lyme when I had a positive test for Babesia, a Lyme co-infection. All my Lyme tests and I had them all...all types, several times... were negative. But, Lyme Literate Docs usually treat for Lyme if you test positive for co-infections as they usually go hand in hand and the Lyme tests are so unreliable. And to Kor's point, the Lyme issue has become so politically divided amongst the medical community it is ridiculous. When I asked my regular PCP to extend my antobiotics a bit longer because I was still making improvement at the 6 week mark, you would have thought I asked him to prescribe me some crack. That's why I sought out a Lyme Literate Doc. It was totally worth it. There is debate whether chronic Lyme shows up on any tests...keep in mind that chronic Lyme is different than untreated Lyme. A really great resource to find out about the stages of Lyme, the treatment, and the "great debate" over the whole thing is www.ILADS.org . This paper is on the site but not that easy to find: http://www.ilads.org...es_12_17_08.pdf It is long but well worth the time and effort to read if you think Lyme or another tick-borne illness is your problem.

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Thanks Kor and Katy. I just looked up the book you suggested, I want to get it. And I've heard how political the lyme issue has become. i dont' understand it though, it's another illness just like other illnesses out there. I wonder why there is such controversy that surrounds it. I also tested negative, I'm not sure which test I had, the most basic one available i'm sure. I'm going to read the links you sent as well. Katy, that is funny the dr acted as though you were asking for some crack or something. So, in the end, were you able to be treated completely and do you feel any better than you once did?

Thanks guys as always for your responses.

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I did testing through Igenex, then also did My Lyme ID through Neuroscience labs (looking through different mechanisms). These labs seem to have the best accuracy, however there is still a decent margin of inaccuracy. As Katybug mentioned, you really need to have see a Lyme Literate MD - diagnosis of Lyme is clinical, not just test results. ILADS is a great resource.

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misstraci,

Funny you should ask as I just wrote about this in another post...I was treated by a Lyme Literate Doc for about a year and half, most of that time she had me on antibiotics and an antimicrobial for the Babesia. We stopped the treatment when I stopped continuing to make improvements but I was mostly better. The doc said that often Lyme patients that got to late stage Lyme (which I did) do have some level of symptoms that do not go away. But, I was back to having a totally normal and productive life for about a year after ending the antibiotics. But, slowly the symptoms came back until I had to stop working 2 yrs ago. My LL Doc stopped practicing to be a full time mom and all the LL Docs anywhere near me do not take health insurance (not unusual with this group of docs...another part of the political problems with Lyme). The least expensive is $450 an hour and the appts with them are always scheduled for an hour or more (at least the ones here in MD that I have researched). So, my disability income doesn't leave room for seeing one of them right now. But, yes, treatment didn't help me permanently but it did help a great deal, so I wonder what would happen if a doc put me on antibiotics again????

Tablet,

I didn't have the Neuroscience "My Lyme ID" test. Can you tell me what that tells you and what it measures?

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Sorry Katybug to make you write it out again :) but thank you. I bet if you were to be on the antibiotics again that you would show improvements but that is just my guess. It stinks that there is so much controversy and even insurance won't cover some of them. $450 an hour is crazy.

Like Tablet mentioned, I've looked into Igenex before. I didn't do it because I couldn't afford it. Do they accept insurance at all these days?

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So with the Neuroscience testing they look at Immune Tolerace Test and Cytokines to identify immune response to BB and co's. My PCP recommended I see a LLMD after my Igenex Test came back questionable. The LLMD had me do the Neuroscience testing to get another perspective and help him figure out what was going on with me. As far as insurance...I think that Neuroscience was at least partially covered by my insurance, but to be honest I don't remember because they sent the wrong test kit the first two times, so they paid for my testing because of their mess up...I was grateful!

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Kor1212... my friend bought me the book you suggested and i'm halfway through. very good so far. all too familiar with the twenty different doctors, etc. It seems the lady went through a lot of colema, enema, colon cleansing. I'm sure that is very healthy for anyone to try, I never have but it's tempting.

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Misstraci, I got so mad reading that book. It illustrated just how much you need to be your own advocate when it comes to your health. It didn't matter how much data and "proof" was given to the CDC and NIH they still did what they wanted! Hard to believe this disservice is still being done to pts with chronic illness like Lyme. It might cost too much for the insurance companies to pay for a year of IV antibiotics so they get the CDC to state " no such thing as chronic Lyme". I think POTS/ dysautonomia could end up like this once they figure out how much money is spent trying to diagnose pts over many years. I know my last year of searching for answers is well over the 100,000$ the insurance companies say is too much to spend on treating Lyme. Anyway....good book. I read another one similar to this, called The Great Influenza. It's about how our country spread the Flu back in the early 1900's via our troops...and the CDC denied that too for as long as they could.

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