Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, April 30, 2013

Trying to rule out Lyme when you have ME/CFS: not easy!

When you have ME/CFS, from time to time, people will suggest that you might actually have Lyme disease.  The symptoms of Lyme are virtually identical to ME/CFS.  In fact, Dr. Paul Cheney apparently believes that ME/CFS and borrelia infection (the bacteria that causes Lyme)  are "exactly the same" illness.  He states that borellia just happens to be the trigger of ME/CFS's cascade of symptoms for some, while for others, the trigger is some other pathogen.  Basically, there are different routes to the same destination, borellia being just one of many.  (Again, this is an oversimplified paraphrasing. The full comment can be heard here at 13:00 to 16:32)

If that's the case, does it matter if you have Lyme of ME/CFS?  Yes, actually it does matter because your treatment options will differ if borellia is at the root of your illness.  In that case, long courses of antibiotics are usually indicated.  But if you don't have borellia, or some other chronic bacterial infection, most doctors will tell you to stay away from long courses of antibiotics.  Antibiotics will destroy your "good gut bacteria", potentially weakening your immune system, so it's best not to use them unless necessary.

So it becomes pretty important to know if you have Lyme or not.  But of course the problem is that Lyme tests are notoriously inaccurate.  My results to a Western Blot test were negative, but if you believe some, that means virtually nothing.  People will tell you that you have to find a really good LLMD (Lyme literate medical doctor) for a diagnosis based on a clinical evaluation.  I'm extremely skeptical of this.

Without a specific recommendation from someone I trust, I can only search the internet for so-called "Lyme experts" in my area.  There are a few.  But when I look carefully about what other patients are writing about these doctors, it seems that they basically diagnose anyone with a pulse with Lyme disease.  I don't want some B.S. diagnosis just for the sake of a diagnoses.  Call me crazy, but I want to know whether I actually have borellia in my system or not.  You wouldn't think it would be too difficult to get an answer, but apparently borrellia is just that tricky.

In the absence of an easy answer, I had recently decided to ignore the Lyme issue for now while I worked on other issues (like methylation).  But, as luck would have it, my friends at HealClick recently posted this great piece on more advanced Lyme screening options.  It really is worth the read.

I do wonder how difficult it will be to get one or more of these tests ordered, however.  I will look into it at upcoming doctor appointments and update this post later.

5 comments:

  1. Hey Patrick, great post. Many people have asked me this over my time with this ailment, if I am sure it is not Lymes desease. I had the same test as you (negative) and a myriad of other blood test not showing a chronic bacterial infection. I admit I did go to a natropath a year ago who put some type of metal object on my palm, and then it gave a reading on a screen she had. From this she said I probably had Lymes. Huh? Of course she wanted to charge me $300 for this. So, to your point, be careful about this......having a pulse will put you into that category. And, she wanted me to purchase many supplements after this that cost another $200. I didn't follow this course of action. Again, a grey area in our whole ordeal.

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    1. Bret, that's an amusing experience you had with the naturopath. That's exactly the kind of quackery I'm trying to avoid. It's hard to know what the right thing to do is, isn't it? I went camping about a month before I fell ill, so there's some suggestion that Lyme could be involved (although somehow, I still doubt it.) I just wish I could rule it out definitively so I could focus on other things.

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  3. Hi Patrick,
    I'm curious, did you ever get any further with the lyme test?
    I wrote to you last year when my husband was starting E, he is still on it and still thinks it helps somewhat, but now we are heading to a local lyme "specialist" for testing...it's strange to want to have something come back positive so that we can treat something!
    Hope you are well. Linda

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    1. Hi Linda. Would you believe I still haven't followed up with a new Lyme test? I have the information about the most accurate testing, but since it is $600 and not covered by insurance and since other treatments are going well, I'm still putting it off.

      Please let me know if anything comes of your husband's Lyme test! I would be very interested to know the results, even if it turns out negative.

      Thanks for getting in touch again! Happy New Year

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