Chronic Disease Group discussion
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Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease
Dr. Horowitz's Wisdom
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Chapter 6: Discussion and Summary
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This chapter just makes me sad for so many of my friends who are still in diagnosis-limbo and don't fit a particular mold.
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I got diagnosed with "an autoimmune disorder maybe only you have." I kid you not.
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Haha! The doctor prefaced it with this: "We don't know enough about autoimmune diseases." Then he said the part about my possibly having my own autoimmune disease. I tested negative for lupus, RA, Sjogren's ... I had a negative antinuclear antibodies test every time too, so that ruled out undifferentiated connective tissue disease. It was so frustrating.I mean, joint pain, knee arthritis that didn't show on an MRI, brain fog--I had classic Lyme symptoms and none of these rheumatologists even considered it.
If I hadn't found the positive Western blot from 2009 (which was from an IDSA doc), I would still be the mystery patient. When I was at my worst in 2010, my family wanted me to go to the Mayo Clinic--that probably would not have helped. I can't wait until we read "Cure Unknown" and find out why this disease is so stigmatized! Every time I talk to my mother, I manage to convince her that chronic Lyme is real, and then one of her doctor friends tells her it's not. I'm tired of being my own advocate.
"Autoimmune-y." Ugh. What a frustrating, vague thing for them to tell you. Did you find out it was Lyme via testing?
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I am also looking forward to Cure Unknown! I asked my LLMD and ND about Dr. Horowitz and they both had the same reaction which I found interesting. I'm paraphrasing but, "Well, he's good, he has a lot of good things to say, but no one has it all correct." I didn't pry, but it definietly made me want to read all the biggies to understand the big picture.
I know! They all need to write books now! Haha!
My pharmacist is starting to give me weird looks when I refill my antibiotics and ask me "How long is it going to be?"
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You went from "autoimmune-y" to "Lyme-y," LOL! I'm always CDC positive for IgM but never for IgG. Oh, and I now have more positive IgM bands than when I started treatment. I don't know if this is good (my immune system is waking up) or bad (the treatment isn't working).
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IgM is new infection and IgG is past infection, EXCEPT with Lyme disease. A chronic Lyme patient can have an IgM result over and over because of the borrelia's ability to shift its surface proteins around, so it looks different to the immune system. The immune system then becomes confused and thinks the Lyme bacteria is something new.
Here ya go: http://lymemd.blogspot.com/2014/04/th...This blog (Lyme MD) is pretty good. I need to read through it! My friend who has a good understanding of Lyme recommended it.
When I first had the positive test in 2009 that the IDSA doc ignored, I had only IgM bands, so she thought it was a false positive, because I had symptoms for more than a month. It makes no sense--it's just how the IDSA does things.
Oh, I didn't answer your question. Since early 2014, I have had a few IGeneX tests, the last one in July.
The test in 2009 (from the IDSA doc) was Labcorp.
Oh my God, I am making so many typos, and I was in the copyediting certificate with your mom. Deborah, are you there? I'm slipping. I've slipped. Aaaaagh ...
Discussion Questions:
1. Were you diagnosed with an autoimmune disease prior to your Lyme diagnosis?
2. Based on this chapter, do you feel you need to investigate autoimmune diseases and how they might be affecting your Lyme treatment?
Summary:
• “Autoimmune diseases are caused by an inappropriate immune response in the body; e.g., the immune system mistakes some part of the body as a pathogen, or a foreign invader and attacks itself. This may be restricted to certain organs or involve a particular tissue, or it may be systemic.” P.163
• With over 100 autoimmune diseases, and over 50 million Americans living with such a disease, it is not uncommon for a Lyme-MSIDS patient to test positive for multiple autoimmune markers.
• When a patient has both an autoimmune disease along with Lyme and additional co-infections it complicates diagnosis and treatment.
• Rheumatologists often miss Lyme when the basic ELISA comes back negative. The Elisa test is often inaccurate. This is especially common when a patient has an undisputed autoimmune condition; unfortunately doctors just simply stop looking for additional causes.
• Lyme disease can cause autoimmune symptoms.
• Blood levels that indicate rheumatoid arthritis can be the same positive antibody titer against certain species of Borrelia. A 1995 study found 57%of rheumatoid arthirtus patients had previous exposure to Borrelia.
• Can infectious agents contribute to autoimmune diseases? Like what we see in the “Lyme Arthritis” hypothesis.
• Dr. Horowitz looks at the big three misdiagnosed autoimmune diseases; lupus, rheumatoid arthritis, and multiple sclerosis. It is important to discover whether Lyme is mimicking autoimmune symptoms or if there are real additional autoimmune diseases at play.
o Lupus is one of the most common autoimmune diseases in the US. And patients present with fever, fatigue, skin rashes with sun sensitivity, hair loss, anemia, arthritis, and inflammation in the heart, lungs, arteries, kidneys and brain. This is a very similar list in patients with unresolved Lyme disease. You can use the double stranded DNA test to differentiate the two issues.
o Rheumatoid Arthritis can also look like Lyme disease and Lupus, presenting with joint pain and systemic inflammation. Also like Lupus and Lyme, all three diseases respond positively to similar treatment regimens. (Like Plaquenil). Unfortunately immunosuppressive drugs are often used which can increase risk for cancer and worsen Lyme disease.
o Multiple Sclerosis is the 3rd most common autoimmune disease confused with Lyme disease. This disorder is defined by the demyelination of nerves. Some new studies suggest a bacterial infection may be behind MS and many authors have proposed Borrelia burgdorferi. MS is also a clinical diagnosis like Lyme and there is no available blood test for it. Check out pages 174-176 for the top 5 reasons Lyme is the basis for some cases of MS.