Gosh I agree. I did not ask for people to make measurable posts so they could decide it is not working at 4 months.
You must understand that this is too soon for the antibiotics to be showing much based on the lifecycle of CPn and the VU work. This is a long term treatment. You don't decide to do this based only
on forum posts. And you don;t stay with it when you feel punky only because of cheerleading, though you might need that encouragement because it is sometimes difficult. Read the CPn work that Daunted so aptly put together.
Also, obviously just because you have a symptom that does not go away does not mean it's not working. Any permanent damage is going to remain...it's permanent. No one claims that every symptom will disappear. Antibiotics aren't stem cells! It is possible that even a person with early disease has some nerves that have a permanent scar. In no way does it mean that Lizz is doing something foolish if she is choosing to stay with this. She has no active lesions. That's how the pharmaceutical makers judge their products in trials after all. They do not say "Oh darn! She still gets double vision. I guess this doesn't work..." IF the lesions are better they submit to the FDA based on that.
Many are taking traditional meds based on this kind of result.
No lesions is an extremely important bit of data. Is it meaningful science since she is only one person? No because maybe she would have no active lesions anyway today. We can't be sure. You'd need 50 people saying they went and had their MRI and none of them had active lesions to start to say that. We might have that with time here. I for one will post such things as MRI and lab results
The drugs offered by traditional medicine for MS are not benign, besides often being immunosuppressive. Since it is clear by the VU work that at least SOME people with "MS" actually have a bacteria, ( I am an especially good candidate for this because I have seronegative arthritis also and I have more than 11 tender poitns-a sign of FMS) I do not personally want to suppress my immune system without being sure I tried this for a good long trial first. My situation is such that what is offered to me is novantrone. I will NOT go there without doing this first. Will NOT. That drug is NOT benign, so much so that any concern about abx is completely inconsequential compared. This is a personal choice based on my belief that MS is probably not autoimmune (Prineas and Barnett) and that the VU work is compelling, and my persoanl medical situation
My request had more to do with people who know they are better. How did they know? Some have answered: Lifeontheice ( a doc)can jog 2 miles. Sarah (wife of a doc)can ride a bike about 4 miles and a scooter. Jim (a PhD with research background)can play golf and still move at the end of a full 18 round, his CRP is down and his lymph up though his issue is not MS. Kataman (wife of a doc) can take stairs many times in a day and feels secure on jury duty. These are important gains that people can understand: every one of them long past the 4 month mark, and every one of these people was progressive and/or had the disease a long time. How many people do you know who are progressive turn around and go the other way? It does not happen in the natural history of MS
. There are none. Sarah, and the Vanderbilt University patents and research documented cases of that happening.
If you do not believe the VU research or do not believe that the approach has merit but it is just a whim to try for a few weeks and see, do not do this. You have to understand and believe the VU research and the work on David Wheldon's site to go along with it. IF that's not you, then let those of us who have decided that the approach has enough merit to be worth our time do it and share our experiences. The list of functional gainers above is not lightweight in terms of medical science. They all, and I also, have been able to understand it well enough, and are convinced enough, to feel committed. None of the people above are fooled by any cheerleading into doing this. I'm a nurse. I am also choosing based on conviction that the research is compelling.