The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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What to call the lingering effects of Lyme disease?

Discussion in 'Other Health News and Research' started by Ecoclimber, Sep 17, 2014.

  1. Ecoclimber

    Ecoclimber Senior Member

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    A big dispute behind a tiny tick bite: What to call the lingering effects of Lyme disease?
    An excerpt from the Washington Post By Janice Lynch Schuster

    When I first heard Duke University physician and cancer researcher Neil Spector talk about his Lyme disease ordeal, my heart skipped a beat. Spector had gone undiagnosed for years, he said, which had led to persistent poor health and a rare but serious complication that resulted in a heart transplant.

    His story scared me. Earlier that week — this happened last spring — I’d picked up my daughter from college. Her bout of Lyme disease when she was 8 had gone undetected for a year, and although we had followed the prescribed treatment (a month of antibiotics), she would spend the next 12 years with seemingly disconnected and random aches and pains: Her joints would hurt, her eyes would blur, fatigue would overwhelm her. She suspected, she told me after leaving her dormitory, that she had chronic Lyme disease...

    ...The nation’s top medical experts, including those at the Centers for Disease Control and Prevention and National Institutes of Health, say that 10 to 20 percent of people treated for Lyme disease, which is transmitted by infected ticks, will later develop post-Lyme syndrome, an autoimmune response triggered by the initial tick bite. These patients may experience a host of ongoing symptoms, ranging from joint pain to fatigue to vision disturbances...

    ...Spector encountered similar challenges. When we first met, he told me how his doctors repeatedly dismissed his symptoms as stress-related...

    ...While on the antibiotic, Spector said, his arthritic symptoms disappeared, confirming for him that Lyme disease had been causing the arthritis. “When I told my doctors this was further evidence I had untreated Lyme, they told me the rapid resolution of my symptoms was merely a non-specific anti-inflammatory effect of that class of antibiotics,” he said. “I say that if it waddles and quacks, it’s a duck. In my case, I had an atypical story, and people just weren’t looking for it.”...

    ...The undiagnosed Lyme had taken a toll on Spector, leading to heart failure, a rare but known complication of the disease. Five years ago he had a transplant. Spector, 57, now heads the developmental therapeutics program at the Duke Cancer Institute...

    For the entire article click on link in the heading above.

    Related: Doctor diagnosed chronic Lyme disease, but many experts say it doesn’t exist

    International Lyme and Associated Diseases Society

    http://www.aldf.com/lyme.shtml#symptoms


    I posted on a similar issue and the fact that researchers are finding additional Lyme disease Borrelia species:
    http://forums.phoenixrising.me/inde...lyme-disease-eludes-doctors-for-a-year.31652/


    This article and many similar that I have read over the past few years, demonstrates a resistance in changing long established 'ivory tower medical dogma' from many within the medical community on a variety of illnesses, when advancement in scientific technology and application of just plain common sense speak otherwise. Unfortunately, it is the patients and families who must suffer from such arrogance.
     
    Last edited: Sep 17, 2014
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  2. Sushi

    Sushi Senior Member Albuquerque

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    How about a subset of ME/CFS?

    Sushi
     
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  3. acrosstheveil

    acrosstheveil Senior Member

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    torture. i suffer from this.
     
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  4. barbc56

    barbc56 Senior Member

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    I think Lyme is most likely not related to me/cfs. However the symptoms do overlap. I don't see why post lyme syndrome isn't appropriate. Many think like post polio syndrome, post lyme syndrome is a downstream effect.

    However, I wonder if like other stressors, it might trigger me/cfs.

    Barb

    ETA

    Would a subset be those who had an initial infection or virus? Maybe that would be too broad to be a subset?
     
  5. barbc56

    barbc56 Senior Member

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    I am so sorry about this. I wouldn't wish Lyme on anyone.

    Barb
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    In my case I had the Hong Kong flu really badly (in bed for about 3 months) and was bitten by numerous ticks in the next few years.

    Sushi
     
  7. barbc56

    barbc56 Senior Member

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    @Ecoclimber

    I'm not saying your daughter doesn't have Lyme but could she also have Fibromyalgia as some think it may be inherited.

    Something interesting that my PCP told me. She said that having RLS may be a predictor FM. We talked about so many things, I didn't get a chance to ask her why she thought this,

    So sorry about your daughter. It's so hard when our children get sick.

    Best wishes.

    Barb
     
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  8. acrosstheveil

    acrosstheveil Senior Member

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    thanks. it is tough. it is even tougher because most people think it's no big deal.
     
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  9. Alea Ishikawa

    Alea Ishikawa

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    Barb - The research from the IiME Conference 2014 has a supposition from findings that ME/CFS is a virus or group of viruses that cause an auto-immune disorder, particularly of the mitochondria. The way they think this might work is via HSP60, which can be found in both a pathogen and in the human body.

    My theory here is that Lyme might result in ME/CFS, though they seem to be different diseases. (Just found this: on HSP60 and Lyme)


    For the name: late-stage Lyme or chronic Lyme. Maybe post-Lyme autoimmunity or ME/CFS, if linked. I remember reading about how folks once thought that Lyme couldn't last beyond 28 (or 30?) days of antibiotics, but then it was found that the Lyme evolved, the antibiotics were ineffective, or treatment was not given long enough. (See Lyme - Persistence.)

    The Embers trials demonstrated that spirochetes were still active in monkeys despite antibiotic treatment. Then there's the multiple Borrelia species that Ecoclimber mentioned.

    (Much like how EBV was once thought of as a "once caught, never again" illness, until physicians started seeing chronic and recurring cases. MS was once considered psychosomatic. There's a lot science needs to catch up on.)
     
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  10. Forbin

    Forbin Senior Member

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    This paper found very different sets of proteins in the spinal fluid of CFS and post treatment Lyme disease syndrome patients, although the two patients groups were actually more similar to each other than either was to the control group. The paper calls the Lyme related condition "neurological Post Treatment Lyme [disease] Syndrome" - nPTLS - but I've also seen it just called PTLDS.

    Even among some of the proteins actually shared by the two patient groups, the quantity of the the individual proteins was quite different in each group - again suggesting a distinct process going on.

    Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome
    http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287

    [Although the spinal fluid profiles of the two conditions seem quite distinct, they are both out of the "norm" to a similar degree, which might account for some of the symptom overlap.]
     
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  11. Wayne

    Wayne Senior Member

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    From my reading, I seem to remember those who advocate for a "post Lyme syndrome" are essentially arguing against the possibility of an active long-term infection, which they apparently believe is impossible. There's no science to back up their conviction, which seems to fly in the face of the ready acceptance of a spirochetal infection such as syphilis being able to become chronic.
     
  12. Ren

    Ren .

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    Last edited: Sep 18, 2014
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  13. acrosstheveil

    acrosstheveil Senior Member

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    i have really bad tinnitus and allergies from post lyme syndrome. seems like autoimmune something to me although I have yet to receive a proper diagnosis. everyone on here tells me to up my methylfolate intake whenever i post this but I have tried it and it makes all my symptoms worse and i get panic attacks.
     

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