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Lyme or TMS

Discussion in 'Structured Educational Program' started by Livinginhope, Jul 26, 2017.

  1. Livinginhope

    Livinginhope Peer Supporter

    Hi. I was diagnosed with chronic Lyme about 5 years ago, but similar to many Lymies, it was not definitive from the testing but more from the symptoms. I have, over the years, gotten some relief and was always thinking that any aches and pains that didn't show up on x-rays were from that. I had my hip x-rayed a few months ago and the response from the testing was, "unremarkable", which is now becoming a favorite diagnosis of mine. Yet I am having a lot of hip pain when I walk and it has been progressing over the years.Like many of you on this site, I have gone to numerous PTs etc. and have been told that I have a hyper mobility in my pelvis which throws things off kilter and that is what is causing this.
    It is now my 20th day of SEP and although I have had periodic relief, I wake every morning with the pain firmly ensconced in my hip. So my question is, how do I really know if this is TMS and not Lyme?
    Thank you
  2. MindBodyPT

    MindBodyPT Beloved Grand Eagle

    Hi livinginhope,

    I know there are many success stories of people getting relief from "chronic lyme disease." There is some debate over whether this is TMS, Sarno believes it to be, I believe due to the fact that some people can test positive for Lyme but be symptomless and some have a large varied collection of symptoms. I was curious about this and did a little research and found this article:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/ (Chronic Lyme Disease)

    Its conclusions are:
    • There is no accepted clinical definition for chronic Lyme disease.
    • Most patients with a diagnosis of chronic Lyme disease have no evidence of Lyme disease.
    • Persistent subjective symptoms during recovery from Lyme disease are not active infection.
    • Prolonged antibiotic courses are ineffective and unsafe patients for patients with prolonged symptoms after Lyme disease.
    So to me this definitely points to the idea that this diagnosis is just another TMS variant and your pain is TMS caused since all testing was negative. As a PT I know that hyper mobility does not cause pain. Lots of people are "hypermobile" but pain free, including myself in some joints! Hope that helps.
    Ellen likes this.
  3. Livinginhope

    Livinginhope Peer Supporter

    MindBodyPT, I love this response. Thank you so much. Something interesting happened to me today. I was flying back from Denver from a week of work and sitting next to a very healthy looking middle age woman who said that she was doing triathlons. I haven't run in years and have struggled just to do my walking. Granted, she was a lot younger than me, but I suddenly thought, what is keeping me from running? I totally forgot that I hadn't run for years and that I have this pain in my hip. So maybe I am still thinking that this is physical and not TMS. This response from you meant so much to me and especially the hyper mobile stuff. I had totally bought that one, so it was great to have someone weigh in and say something that I wasn't letting my body believe. Thank you so much.
    Ellen and MindBodyPT like this.
  4. srton

    srton Well known member

    Thank you for this - this is inspiring me to strap on my shoes and head out for a run.
  5. Livinginhope

    Livinginhope Peer Supporter

    Ok, so I am now determined to take up running, probably more of a jogging than running. Today, I went out for my usual 2.6 mile walk, achy in my hip as usual but said to myself, let's give it a go. Jogged, or at least had both of my feet off the ground for two separate parts of the course that I walk. I guess in all the jogging part was about 1/2 mile or less. But I did it. I was so tired when I got home but my mood was through the roof. I am encouraged and will pace myself, but feeling encouraged to continue. I mentioned this to my son who said he wanted to run with me when I come out to LA to visit, in November. Baby steps, but keep them coming!
    MindBodyPT likes this.
  6. Ellen

    Ellen Beloved Grand Eagle

    It's amazing to me how people (even strangers) come into our lives and deliver just what we need to hear at just the right time if we are open to them. I'm trying to look at all my encounters this way. What does this person have to teach me that I need to learn? Makes life so much more interesting if approached this way.

    Best wishes with resuming your running. You can do it.
  7. Livinginhope

    Livinginhope Peer Supporter

    Thank you Ellen, Beloved Grand Eagle. That is such good advice. I just came back from my jog/walk and feel strangely at peace. Who know whether this endeavor will last and to be honest, who cares. For today, the sun is shining and I am feeling hopeful and energized and grateful for finding this site. Still have pain but also am realizing that I may not actually need that pain anymore?
    MindBodyPT and Ellen like this.
  8. vrogers

    vrogers Newcomer

    I have been diagnosed with chronic Lyme disease. I have positive test results from a German lab for two species of borrelia (including bugderfori), plus several coinfections including EBV and Cytomegalovirus. My tick bite was 25 years ago and I had an acute reaction of meningitis at the time which evolved into chronic fatigue, but Lyme was never diagnosed or treated. I developed a fibromyalgia-like chronic pain condition three years ago. I have declined antibiotics and am being treated with herbal meds. But after several months of treatment, my chronic pain is not diminishing. I am thinking the pain may be due to TMS. I have virtually no other symptoms at the moment (the fatigue seems to have resolved). The problem is that TMS could explain all my pain symptoms, but so can the chronic Lyme. How do I determine which is which, and if it is TMS, how do I overcome the doubt that is involved with thinking the pain might be caused my the Lyme disease complex?
  9. miffybunny

    miffybunny Beloved Grand Eagle

    This idea of "chronic Lyme" has been debunked. I tested positive for a couple of bands and was misdiagnosed by some quack dr. who disappeared. It's such a scam and it makes me crazy. Lyme disease is promptly treated with antibiotics. There's no such thing as "chronic" lyme. It's all TMS and you are keeping these symptoms alive through your thoughts.

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