Anecdote wrote:Hello L, my diagnosis when I first started abx was secondary progressive and it must have been of about three years duration out of a total of nearly twenty. Te neurologist told David that he would be wise to search out nursing homes. When I started treatment I could just about walk a few feet but had an abhorrence of wheelchairs and mobility scooters.
David has treated a few people with PPMS and I guess the success rate is the same as SPMS: most people do at the very least stop progression. The people who do the best are those with still relapsing remitting but maybe only because they have less residual damage to cope with.
There are lots of people with experience of abx and MS, but they mostly end up on CPn Help rather than here. The most prominent person with PPMS is Katman, real name Rica. You could write to her either here or at CPn Help, but the last I heard she was having difficulty logging on here, so CPN might be better.
I don't know what nationality you are but you write very good English. There are people of many nationalities at CPN: for instance, there is Evita with SPMS, she is from Slovakia.
As for doctors, sometimes your own family doctor will be willing to treat, sometimes not. I can't understand those that won't. If you would like me to send you some papers published about the treatment by Charles Stratton of Vanderbilt University and my husband I will if you PM me your email address. You could show these to a doctor. Since we seem to be going the way that English is going to be the main language of academia, especially science and medicine, most doctors will have enough English to make sense of them. I heard last week the Milan University is going to teach just in English: I don't know what Italian academics think about that!
Side effects: they vary from nothing (Mackintosh) to delirium for a week or so (me, not that I remember!) For this reason it is better if you have a family member or good friend to be with you far a couple of weeks at least. If you are taking rifampicin you should have your liver tested once in a while but you don't need to take rifampicin and any doctor should know what to test for. I was never tested for anything since David would have seen if there was anything amiss.
Let me know if there is anything else you want to know.
thank you for your answer. I went through the web sites you recommended, both CPn Help and David's. It seems to me if I find a doctor locally then with tests they would be able to check my liver function, so that risk could be limited.
I am just wondering how this treatment protocol would suit someone who has had urinary chronic infection. Would not it be a problem? I have been treated with prostate infection for years and I took lots of antibiotics for that. That time I took something for a week or two, then stopped for two weeks and get a bacterilogy test and get another antibiotics based on the test results. That time my urologist told me that whenever they get rid of one tribe of bacteria, another one occurs, so a different abx is needed. I think prostate is similar to brain in that aspect that both of them needs lot of time to get rid of the bacteria via abx. His choice of abx was based on the test results and he always tried to change the abx if it was possible to avoid resistance.
As far as I saw most of these antibiotics for CPn are for treating urinary infection as well. So, this week I will go to my urologist and I will ask him about this abx protocol and whether he can recommend someone to prescribe them for me.
Sarah, if you have any supporting study on the lack of abx resistance as a result of treatment, that would be helpful to convince my doctor here. Unfortunately, my options are limited in terms of chosing a doctor as neurologists would not listen to me and my family doctor tries to avoid abx anytime if he can. I think doctors here are afraid of doing anything that is not mainstream, they do not really care if you die as long as they are not responsible for that legally.
Your story is very intriguing and gives people some hope. If you have any short study on success rate that I can show to my doctor, I would really appreciate it.
As for ppms, what should be the results that the doctor should look for to check if the treatment is effective in my case? How long does it take to kick in? I think these things would be important for any doctor who takes on this treatment.
Sarah, thanks again for your help. I really liked your paintings on your website.
I am really glad that you had such a nice reverse of the disease.
P.S. I pm-ed you