Thanks for the information, Sarah. Betaseron, every other day.
It's actually not I who has the MS; it is my girlfriend. I was the one who recommended the same treatment that you are taking, to her. She showed Dr. Wheldon's web pages on your treatment to her neurologist and the neurologist essentially responded with, "I never heard of anything about this. The whole idea is ridiculous." She decided to take the Minocycline anyway, which she got off-shore.
For two days, nothing of note happened, and then the MS symptoms got much worse. She slept as much as possible, while I paced up and down in my living room and tried to watch TV to distract myself. From my perspective, it was nerve-wracking, especially since it was in direct opposition to her neurologist's instructions. She says it never occurred to her that there might have been a link between taking the Minocycline and the worsening of her symptoms or she might have stopped taking it. It was extremely painful, especially since waking her just to take her medicine and get properly hydrated seemed to me as if I was inflicting physical abuse on her.
On the 7th day after starting the Minocycline, she felt much better, although somewhat shaky and on the 8th day, all MS symptoms were gone, except for one eye which still gets somewhat blurry when she gets over-heated. That is probably long-term damage and I am hoping it will fix itself eventually. Every symptom she had ever had reported with MS seems like it came back during those horrible four days, except for the optic neuritis in that eye. There is probably a relationship there.
She is now sleeping regularly. This is, of course, just speculation on my part, but I think there's likely a link between having an infection and lack of sleep: when you are ill, you are particularly vulnerable, so may be we evolved to not sleep easily during infections.
Dr. Wheldon says, "The results were astonishing." They certainly are! I am still trying to recover from the emotional roller-coaster I went through. She is making atrocious puns (which she hasn't done in years), sleeping reguarly, avoiding red meat and wine in preparation for the metronidizole, and having a great time. She appears to have much more energy, both at work and in all aspects.
BTW, it is probably worthwhile to note that Minocycline, (100mg taken every 12 hours, initial dose of 200mg), seems to have the same effect. She had taken betaseron for several years prior to starting on Minocycline. Dr. Wheldon writes, "In MS, particularly relapsing-remitting MS, the bacterial load is likely to be small, and the reaction brief." She has relapsing-remitting MS, but it does not seem like the bacterial load was small. The negative response seems to have been as intense and prolonged as in your case. Possibly, given her history of betaseron, the bacterial load had built up considerably but the betaseron managed to prevent greater damage so the disease was still in the relapsing-remitting stage.
She is continuing on the betaseron. As far as her neurologist and insurance company is concerned, she still officially suffers from MS. Obviously, since her neurologist did not treat her, she cannot have gotten better. I don't know. Perhaps it is still a bit too early for me to start getting sarcastic.
She is due for another MRI in about a year. If there are no other symptoms and the lesions become pronouncedly smaller, she might stop taking the betaseron then. We still haven't figured out when to start the course of metronidazole. Maybe wait till the MRI, but we are also concerned about developed bacterial resistence to the Minocycline. That would be terrible, since the mutated organism would possibly be resistant to all of the tetracyclines and then we would be in serious trouble. But, I am not looking forward to it, either...
Last edited by Byron
on Fri Sep 10, 2004 12:38 pm, edited 1 time in total.