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

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

Sunday, December 13, 2015

Western Blot test says I have Lyme Disease. What?!

As I've written, I hired a new doctor about a year ago (Dr. M).  My goal was to start fresh and see if I could improve further with new theories of treatment.  My new doctor is, among other things, a so-called "lyme literate medical doctor" ("LLMD").

Ever since my second appointment, Dr. M has stated her belief that I may have chronic Lyme disease and its common co-infection of Babesiosis.  Babesiosis is another tick-born disease that is often transferred to the infected patient along with Lyme disease by the same tick bite.  The suspicion of Babesiosis was based on my shortness of breath and the periodicity of my symptoms.  Apparently Babesiosis symptoms come and go on a predicable schedule and Dr. M felt that my reported intervals of aggravated symptoms matched roughly with Babesiosis.

In 2011, when I first fell ill, I of course had a Lyme disease blood test through one of the large corporate blood labs.  I had the Western Blot test (which is considered by some to be superior to the ELISA test.)  The results were negative.

Since then, I've had many people advise me that I should be reevaluated for Lyme disease by an LLMD.  I nonetheless felt that Lyme was an unlikely explanation for my symptoms.  My prior doctor, Dr. W, told me he didn't think it was Lyme.  I never had any joint pain or arthritic symptoms, as are common with Lyme.  So I assigned Lyme a low priority on my mental list of possibilities to investigate.

After teaming with my new doctor, I was still reluctant to investigate Lyme.  Dr. M wanted me to take a test through the iGenix lab, which offers a version of the Western Blot Lyme test that is considered by many to be more accurate than the large national labs.  But there were two problems: (1) the Genix test is not covered by insurance and can cost about $900, and (2) the iGenix test is somewhat controversial, as some believe that it tends to over-diagnose people with Lyme disease.

I finally agreed to spend the money and take the iGenix test.  I truly believed there was a strong chance I would be the rare person to test unequivocally negative, even under the sensitive iGenix test.  This would, I hoped, put the Lyme issue behind me forever.

My doctor's office emailed me the results of the test on Wednesday night, ahead of my appointment.  The IgM antibodies for Lyme disease were positive.  The iGenix results show a diagnosis of Lyme under two standards:  iGenix's own standards, and under the standards promulgated by the national Centers for Disease Control (CDC).  If the iGenix standards are considered by some to be over-inclusive, the CDC standards are considered by many to be very under-inclusive.

My IgM antibodies showed positive for Lyme under both iGenix and CDC standards.  This captured my attention.

It should be 100% clear that I have Lyme diseases, right?  No.  Naturally, there's ambiguity.  My IgG antibodies were negative for Lyme disease under both standards.  IgM antibodies (positive) are indicative of a current, active infection, while IgG antibodies (negative) show past infection.  Dr. M's interpretation is that I still have an active Lyme infection and my body hasn't progressed to the stage of making IgG antibodies because the Lyme remains "active."

With respect to my doctor, I'm not certain that's how IgG antibodies work.  My understanding is that the immune system begins making IgG antibodies a few days to a few weeks after initial infection, even if the infection is still technically "active."  Unless I contracted Lyme on Monday (ha!), these results seem almost impossible.

The results of my Babesiosis test were equivocal.  Indeterminate.  Because of course they were!  It seems nothing is ever clear with chronic diseases.

I searched the Internet the night before my latest appointment with Dr. M to interpret these test results.  There were messages, blog posts, and articles by doctors and patients discussing my exact results.  While all of these sources indicated that I do have Lyme, many of them referenced (second-hand) that some doctors apparently interpreted IgM(+) and IgG(-) as a false positive result.  No such doctors could be found explaining their reasoning directly, rather there were vague, passing references to "some doctor's views."  I feel as if I'm only reading one side of the debate.

Still it is very hard to ignore the positive results under the strict CDC standards--right there in bold ink.  The words "CDC -- POSITIVE" practically demand my attention.  Plus, it seems as if most self-identifying Lyme patients who have been diagnosed through the iGenix test were not positive under the CDC standard.

I'll be honest: I am loathe to enter the Lyme "rabbit hole."  I've spent the last 4 and a half years researching and treating ME/CFS.  The Lyme community of patients always had a significant overlap with the ME/CFS community on message boards and blogs.  We were these two groups with seemingly about 95 to 100% overlap in symptoms and about 70% overlap in treatments.  Basically, we all speak the same language.  Yet in some ways the two communities seem worlds apart.  The Lyme community often appears closed and esoteric, and many Lyme patients disavow any connection with ME/CFS despite strong evidence that there's a similar chain of neuro-immune dysfunction in both diseases.  Nonetheless, both communities are bound by the connection that their diseases are understood by virtually nobody.  We've all been forced to adopt a sort of "us versus the world" defensiveness.

I've interacted with many Lyme patients on forums, many of whom are undergoing long-term antibiotic treatments.  Of those that I've personally interacted with, I can't think of any who have experienced any improvement on long-term antibiotics.  For that reason I'm reluctant to explore antibiotic treatment.  I recently read an article by the incomparable Cort Johnson that explained how some have been harmed by false Lyme diagnoses and unnecessary antibiotics.  I'm not shutting that door completely, but it would the last of last resorts for me -- pending more investigation.

In my mind there's about a 51% chance that Lyme is the cause of my problems.  But I suppose that I need to give Lyme treatments a chance.  How do I explain the positive CDC result?  Then again, how do I explain the prior negative Western Blot result, presumably under the same CDC standard?

Dr. M wants to treat it with a combination of Byron White formulas, "essential oils" treatment, and
Phosphatidylcholine.  I have to start researching these treatments.  The frustration is that it is difficult to find objective information on these treatments for Lyme.  Most of the information available is from Lyme patients who are taking these treatments, or "LLMD's" who prescribe them. Both groups are predisposed to believing their efficacy.

Rabbit hole, here I come...

17 comments:

  1. I was exactly where you are at now a year ago. Having had three negative Western Blot results before, I got a positive one. Lyme is a rabbit hole, and usually expensive to treat. But much better to know what you are up against then to treat something else, which I did for 7 years hardly getting better. A year after diagnosis I am more than halfway there.

    I would strongly suggest that you look into BAH (Bioresonant Analysis of Health) testing. You'll find information on innovativemedicine.com. This will give you an accurate picture of what else may be going on re: heavy metals, parasites, which coinections, any dental issues. The entire picture for ~ 1000$s. And they will also tell you what treatments are most suitable to your body at this time. But, run from them at that point if you have limited finances, because their treatments are the most expensive around. Use that information to compile your own treatment plan. Btw, I am in no way affiliated with them, just trying to give you a heads up on your research having been there and done there (including the mistakes) myself.

    Whatever path you chose to trot, remember be brave! and mighty forces will come to your aid.

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    1. Thank you, I appreciate that information.

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  2. Patrick......I am soooos sorry to hear about all your suffering....I am to sick to write much, but I wanted to tell u, that I too.....found out that I have lyme !! & all it's little 'buddys' that go w/ it, only a year ago, after thinking I had cfs/me for over 30 yrs ....it still blows my mind ! BUT YES....LYME ...I now, consider cfs/me only names that are symptoms (to hide lyme) of Lyme !! (pls let me know if u want any leads) Keep on Keeping on.....w/ Blessing's

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    1. Wow, 30 years is a long time, but I'm glad that you have something more to focus on now. Can I ask, how did you get diagnosed with Lyme? What test was used?

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  3. I'm being treated by Dr. M. too. I didn't find that any Byron White formulas were helpful to me. I had more success with Beyond Balance and the most success with the Cowden protocol as it covers not only Lyme but, Babesia and Bartonella to some extent. However, I'm still experiencing relapses after 2 years of treatment. If you haven't already, you need to read Dr. Richard Horowitz' book on Lyme - 'Why Can't I get Better'. It will explain all of the things you need to check out to ensure there aren't other factors keeping you sick (i.e. heavy metal, adrenal, and thyroid testing [preferably TPO antibodies] etc. I guess it's been almost a year since you posted this - I hope you're doing better by now.

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    1. Hi Shari. It is really interesting to meet another Dr. M patient. I actually switched over to the Beyond Balance formula too, so I hope I have the same results as you. I will check out that book. (BTW, I posted the post above a couple of weeks ago, not a year ago, so it's all fresh for me.)

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  4. Thanks again for sharing your continuing saga. As someone who's also been in this rabbit hole, please don't go down the ridiculous path of long-term antibiotics. It will do you much more harm than good at this point. Also, please don't even consider colloidal silver! Best of luck to you!!

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    1. Thank you! I guess i would never say never, but right now I do not forsee doing the long-term antibiotics thing. I have interacted with a number of Lyme patients on forums over the last 4 or 5 years and I don't know any long-term antibiotics users who've actually improved. Well, possibly one, but it seems most do not improve. Some get worse. Plus, I'm skeptical that the Lyme diagnosis is correct at this point, so I'm not about to destroy my gut biome on a hunch and a questionable test. Thanks again for sharing your thoughts on this...

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  5. If you're CDC positive on the igenex test, you should be able to replicate it with a CDC certified lab via your standard allopathic doctor. If that is negative then it would mean igenex is probably BS (which is my sneaking suspicion).

    I'm keen to send you a private email regarding the foamy urine you were experiencing a while back. Can you tell me how?

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    1. That's a good point. I might do that. My email is QuixoticMEblog at gmail. I would love to hear what else you have to say on this subject.

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    2. Hi Patrick. I sent you an email about a week ago but I haven't heard back yet. I do not mind, but I just want to make sure you had actually received it?

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  6. Patty! I'm one of those that got worse with long term antibiotics. As in an IV infusion for 42 days straight! No break! Well, I had a short break because my liver got super alarmingly inflamed from tx and we thought id need to take out my gallbladder too. Soooooo yea. And I am pretty certain I had a tick borne infection because we must used regular old Quest labs.

    With that said, everyone else I regularly saw in the infusion room got improvements, some miraculous improvement and back to work! But....many ended up back for more antibiotics in a year or so.

    So, I don't know what the answer is. We're all so individual. The only thing I've concluded is that if someone has chemical sensitivities, it's better to go the herbal route. But that's only based on my observations in meeting patients.

    Wishing you luck!

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    1. Sandy, I've been thinking about you ever since I got this diagnosis. We need to catch up!

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  7. I think you're right to question your doctors interpretation of the IgM result. There are disorders affecting antibody class switching, but these should be pretty easy to spot (excessive total IgM levels and diminished IgG levels.)

    The only thing that made your result "CDC positive" is the minimum required positive bands. I still would very much question the reliability of the way iGenix performs the assay. As someone else mentioned, a standard WB test from a reputable lab should clear things up rapidly.

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    1. Thanks Weyland, I think that's my next step - to see if the test results can be replicated by another lab.

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  8. If I had received that test result back, I would have written an identical blog post. I feel the exact same way about the forums and about the Lyme tests and the antibiotic treatments. What a conundrum...

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    1. Thanks for your support Elizabeth. I know you know the frustration with all the ambiguity in the tests and information that are available to use for chronic illnesses.

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