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The Zebra Found! letter to my neurologist (Chapt 10)

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  • The Zebra Found! letter to my neurologist (Chapt 10)

    Doctor, I’ve finally identified my health issue. And the clue that cracked the case: my recent spate of UTIs, or more specifically the antibiotics that I’ve treated them with, and this one realization—"It’s as if my MS bladder issues all cease, with me urinating normally every few hours. After years of MS bladder issues, normal is a strange sensation.”

    So, I looked back at my MS history and for those times when I felt well. They all surround antibiotics. Just before my stem cell transplant when I was trying to qualify for the trial and my body was crumbling, I saw a urologist out of desperation (maybe a lurking UTI) who prescribed me Doxycycline, 100mg, 2x per day, which I took from 12/18/2009-late February 2010. I went from being unable to cross my living room floor without my walker to being able to walk unaided for 100m. Then after my stem cell transplant, when I took them for more than a year, I went from barely walking to being able to walk over 700 meters unaided. After I stopped, the gains slowly evaporated.

    There’s a reason no MS treatments have worked for me. Because I don’t have MS. My first major attack started with facial palsy—when I smiled, my right lips drooped, and, suspecting a stroke, I went to the ER (in time the numbness spread to my entire right side). I had reported odd joint pain and swelling (wrist and knee). Chest pain and cardiac symptoms. Numbness and tingling in the hands and feet. Looking back at my journal, I recorded neck stiffness, fatigue, and general pains….

    I have Lyme Disease. My symptoms are classic.

    The kicker: I hiked in the woods of Lyme, CT on September 20, 2004, without protection. Days later I thought I had a blackhead in the middle of my scalp, so I plucked it out while in the shower. It went down the drain before I could see what it was. Then maybe a week later, I thought I majorly screwed up putting on sunscreen. My brow had a red swath that was warm to the touch. A rash. Likely a bullseye, hidden by hair.

    I’ve attached detailed notes from that time, sent to you (and other doctors). During my diagnosis period, I saw more than a dozen doctors and specialists including two cardiologists, a knee surgeon, infectious disease doctor, and multiple neurologists. But at that time, Lyme was more of an afterthought, and it didn’t make a splash on the CDC website until 2010. Everyone missed it. And that’s not uncommon—1 in 5 with MS are misdiagnosed. Translation: shit happens, even to world’s leading neurologists.

    I am 100% confident in this diagnosis. And thank God antibiotics appear to work. We need to find the country’s leading Lyme specialists and get on a treatment plan asap. Thanks doc,

    Dave Bexfield

  • #2
    Way too close to my story - just tweak a few things and my story is very similar. Misdiagnosed in 2000; just found out it's Lyme last year. Been on the UTI merry-go-round & found astounding successes when taking antibiotics! This disease is cruel, and what's worse is the CDC's lack of action in Lyme and related tick-bourne diseases. There have been cruel players keeping a lid on the magnitude of the Lyme problem, stymying progress in research, testing, treatment of Lyme disease. It's time to blow the lid off this too-frequently-misdiagnosed-as-MS disease.⏰


    • #3
      i am worry i have Lyme I know it's not MS i have been saying this for a decade, been diagnosed in 24 december 2008 in Quebec
      I used to work in parks, I also got bitten by a tick a squirrel etc. during that period like a month prior.., but there is no one here for the Lyme disease here in Canada,
      have been searching, found two people who used to do tests with USA labs but not they don't offer the services anymore,
      menage to contact one of the doctors

      Sophie Michaud, MD
      Hopital Brome-Missisquoi-Perkins


      Dr. Amir Khadir
      Lachenaie, Québec

      from what i have found these two used to do good testing and help ppl.
      I also feel better using antibiotics I notice I was feeling way better if i use them for a prolonged time.
      i just don't know do i buy illegal antibiotics at this point!