Since I've been taking just 1 flagyli per pulse since some time last summer and have occasionally skipped a week, I truly have lost count. But as of the last 2 pulses I am up to 2 pills. Today was day 3 and I was able to go out and do some shopping, but I came home utterly exhausted. Of course, that's not exactly new for me. During the teaching semester, just stopping for gas on the way home from teaching a 3 hour class requires true grit.

http://www.pharmacychoice.com/news/article.cfm?Article_ID=122320

 

I still don't know how to post a link! SORRY. 

While I publicly profess full faith in this protocol, privately I sometimes get the heebie-jeebies. This is how I see it:

Progress: no more lazy eye; I can feel the muscles below my right knee now; clearer thinking; better with buttons

Scary: I walked better last year. I know this because I was able to teach without using the cane; in the last week my left leg (the good one) went out from under me a few times -- it's spreading!

Hmmm? 

Nancy 

White kitten curls

 

against you, blue eyes on yours

 

miaow ow: flagyli

I began limping early in 2001. I only limped after doing .7 miles on the treadmill and I dismissed it as strange but meaningless. However, whenever I reached that .7 mark I could no longer feel or control my right leg below my knee. Nevertheless, I continued to function fairly well without complete sensation and worked out 3 times/week to ensure that. But my walking continued to deteriorate. In 2006 the neurologist decided that I had msi and estimated that I had another 10 years until I would need a wheelchair. He did not anticipate the rapid deterioration that followed menopause.

I have  discovered a more effective way of walking, made possible by my nascent development of core muscles in physical therapy.

As many of you know, I have been doing CAPi for over a year now, first with prescriptions (but no advice) from a neurologist at Hopkins and then on my own with the guidance of all you good folks here at cpnhelp.

Update: 

So here it is June 10. I am still weak and tired with intermittent pin pricks all over my body, pins and needles in my hands and feet (especially when I sleep), compromised balance, aching legs and occasional fasciculationsi in my right hand and foot. As far as I know, these are not porphyric reactions but an ongoing battle between bacteria and antibiotic. So perhaps the flagyli works for a longer time in me than in most people? Perhaps I therefore need fewer pulses to achieve the same results. 

Hi. (Guys -- don't read further, you cheats!)

Tell me if any of you have experienced this: My breasts have been aching for about a month now. They grew slightly at the beginning but have stopped. I am only wearing the bras that fit and I have not had any caffeine for about 3 weeks so as to rule out cystic breasts. Also, a few times I have gotten a sharp pain in one or the other of them. Has anyone else experienced this? Is it part of msi or die-off?

Here is a copy of a note that I sent to my HMO doctors. Don't be put off by my differentiating PPMSi from other kinds -- it is an arguing point:

I know there is some curiosity about this drug which was prescribed for me yesterday to combat fatigue. Apparently it is often prescribed for Parkinson's patients to combat rigidity. Right there is a good reason for me not to take it as I am much more likely to go limp than stiff -- my pt doesn't want me to do stretches because I'm already too stretchy. Anyway, I took it this morning for the first time -- at 9:30 -- and sat down to read the paper awaiting the surge of energy which would propel me out of my chair (when I took Concerta last Monday I felt like I had swallowed a rocket). Instead I fell into a deep sleep at 10:30, awoke at 1pm and remained sleepy and groggy until the drug wore off about 9:30pm.

My neuroi today decided that I had peripheral neuropathy. I noticed that it is not uncommon amongst the ailments listed by members here. Yet he said that it was not a symptom of msi and that I must have something else as well. Online definitions said that it could be caused by an infection. Is there something I am missing here?

Or something that he is missing? 

I went to see the neurologist at Johns Hopkins that my now departed neuro had recommended. The intake neurologist did the exam and asked the questions -- he was very nice. Then, after they had examined the mri's, the neurologist came in. He says that he knows Dr. Sriram and is totally familiar with all of the literature and despite many very valid attempts to duplicate Dr. Sriram's results, there has been no duplication. He totally discounts the research and says that I am the first person he has ever met who has reported improvement using this protocol. Because of that he is willing to call Dr. Sriram and question him closely as to the safety of taking long-term antibioticsi and then let me know his decision.

My parents both have symptoms of cpni and my mother has had it almost all her life. Yet they are too old (mid-80s) to benefit from our experience and, apparently, too shy to ask a question. So here it is: My father has had fibromyalgiai for about 5 years. He has noticed that when he has an injury or virus the pains go away. For instance, he cut his thumb last week and it swelled up. All the other pains went away. I told him that his problem was obviously solved: all he has to do is keep cutting himself. Anyway, he was wondering why this happens; does the immunei system get so involved with healing the wound that it forgets about the fibromyalgia? Any ideas?