Hello, all! What an interesting conversation.
Not quite sure what I'm saying regarding antibiotics and misdiagnosis here, Anecdote. I happen to be one of those who believe that MS has become the designer disease of the millenium, and yes, I truly do believe alot of people are misdiagnosed. I believe there are alot more Lyme diagnosis out there than we are aware of, due to testing issues and time frames or "windows" of opporunity, if you will, for accurate test results.
Do I think that anyone who responds to antibiotics doesn't have MS? Nope...I'm not saying that. I just believe that there are far too many people walking around with an MS diagnosis who shouldn't be, without the proper test results to base the diagnosis on.
I do find it interesting that my friend's MS symptoms subside when she takes Doxycycline. No, she doesn't take it all the time, only when she has a severe acne flare up. She isn't on any of the CRAB drugs, either, by the way...Just LDN.
Alot of this goes back to what happened with my son when he initially became ill. Not sure if I've ever told the whole story here, so I will shorten it a bit and give it a whirl.
He had a really severe stomach virus one weekend, vomiting, diarrhea, fever and abdominal cramping. Seen in ER for dehydration, had shot of phenergran. Abdominal cramping continued for a few days, and he was just not himself as far as his stomach went, it seemed he couldn't get over it. The week PRIOR to this he had been on a deer hunting trip and was COVERED with mosquito bites. A week to the day after the viral stomach thing, he complained that his left eye felt like it was "trying to cross". Again on a weekend, so we thought maybe conjunctivitis and planned to take him to the doc on Monday. By Monday, he was increasingly fatigued, and losing feeling in his fingertips. By the time the doc could see him that night, he was having difficulty walking and balancing. A CT was done, and we were told he had multiple inoperable brain tumors, he was then rushed by ambulance to Vanderbilt University Medical Center. (By this time he was completely paralyzed in his left side...) An MRI was done immediately and we were told that the 20-30 spots on his brain were lesions, not tumors. A spinal tap was done with the only abnormality being an elevated white blood cell count, indicating a viral infection. This + multiple mosquito bites and number of lesions = acute disseminated encephalomyelitis....I could at least breath at this point. He was treated with i.v. steroids for 5 days, with slight improvement, at least he could stand, and was sent home on a very low tapering dose that ended REALLY fast. Within a week, same problems, right side. More i.v. steroids. NEVER tested for Lyme until 6 months later. A month later, same problems, back in left side, and that's where our MS diagnosis came in. Another spinal tap was done, still no indication of MS, just an elevated wbc again. I've always wondered if he had been treated with antibiotics and steroids if things would have turned out differently. I also wish they had done a Lyme test at the proper time, but they didn't, and I can't turn back time. I also trusted Vanderbilt to be doing everything that needed to be done.
He's had one severe exacerbation since then, a little over a year ago, while using Avonex. He is now on LDN and doing fantastic, and the doctors are asking me to have him tested for Lyme by a new test still in the research phase. I am hesitant to get another diagnosis that I can't believe in, so I'm on the fence on this one.
Hope this helps to understand where I am coming from a bit better! I shortened it all I can! Sorry for the length, there are just so many important parts to it. Take care!