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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. https://www.cdc.gov/lyme/signs_symptoms/index.html
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
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. https://www.cdc.gov/lyme/signs_symptoms/index.html
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
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