March 30, 1999

I have a correction regarding LifeCare's protocol... how they end up with their antibiotic choice for treatment....Which I'm finding out isn't by looking at each person individually but giving all MSers the same.... that's why they only take a day  (or hours!) to write up ones treatment plan. They may adjust treatment later but initially they start everyone the same. I don't really know if that's good or bad, considering the ABC drugs.With ABC drugs, it's hit or miss, you respond or you don't! MS Society Researchers are using averages as well.

Dr. Lindner at Texas A&M does blood cultures first to determine which antibiotics will be used, he doesn't use the same treatment for everyone. (That's obviously why Lindner takes longer to come up with a protocol.) Here is a entry from Lindner's Report...

"We recommend patients are treated on these antibiotic regimens only with culture monitoring of the number of organisms and with antibiotic sensitivity testing. We have found that sometimes antibiotics can actually stimulate bacterial growth and make the patient worse and that this can often be predicted by the cultures."

Another interesting statement which I'm trying to find out exactly what he's talking about is that certain drugs can cause bacteria growth! Wouldn't that be something if drugs that we're taking are actually causing more bacteria! (wouldn't surprise me!) I would suggest that any MSers ask or have their Doctor ask Lindner what this is all about, if you are thinking about trying this treatment or not. All though, your doctor may think you're a little crazy! This IS our disease, ask and get answers for what you want. There's no polite way of saying this,... they ARE working for us...Here's another portion of his Lindner's Report...

"The microorganism is a peculiar bacterium. It was discovered essentially by accident in blood samples. Although a colleague is convinced that it is a spirochete,[LifeCare's approach] our data says it definitely is not. It is now definitively classified, although specific species or strain characteristics are still being determined. It is present in all of the population, including normal persons. It may be acquired prior to birth, although new strains might be acquired later. It is generally present in higher numbers in persons who are symptomatic and it has been recovered from cerebrospinal fluid. There is no direct proof yet that it causes either of these diseases or any other disease, but in persons who have been treated with appropriate regimens, a reduction in these bacteria is always associated with clinical improvement and an increase corresponds with increased symptoms."

If this isn't the cause of MS, than something is happening for the good that lessons symptoms anyway! Cause or not, if good things are happening than Yee-Pee! Antibiotics aren't threatening so I'll give it 2 Yee-Pees!

Any MSers that is going to try this treatment, would you let me know so we can all get on some sort of email list to compare notes as we go along. I have started one that I labeled in my Address Book, simply, Antibiotics MSers. (creative aren't I!) Having support and first hand knowledge is a real plus.