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Oh right, so according to the AMA I got better with being treated with ‘junk science’ Who did you see at Vanderbilt?  I think there only ever was Sriram who used this, all the other neuros stick with AMA beliefs.  Well done for getting two years of treatment though!................Sarah

Who did you see there ?

Also, Batgirl,  will you keep a thorough journal as you go through this protocol?  I found it to be helpful when I did.  Note all your symptoms at the beginning, note each med as you add it and note each improvement as you have it.  This will help for two reasons:  1) to show yourself that you are experiencing changes and 2 ) convince Vanderbilt docs to return to the protocol if they see that a patient improves. It concerns me greatly that they are "abandoning" it. Thank you  

The idea of a primary autoimmune disorder is perhaps the bona fide junk science.

so, they put me on the following:Doxycyclene 100mg daily (M-Su, 365...)Azithromyacin 250mg 3x per week (MWF)Metronidazole 250mg 3x per day for 7 days per month (le pulse)vitmins/supplements: multi-vitamin (food based - horse pill size...), vit. E, milk thistle (liver function), Vit. D3, vit. B12, Q10, lactobacillicus, creatine, kelp (iodine), and NAC of course.Also - following the BTD (blood-type-diet) as close as I can, considering I'm type O+ secreter and a vegetarian...so far, the only problem is the 8oz water w/each ABx... if I try to swallow the pill and then gulp down the water, I get nausiated and upchuck :-\ ....so, about 15min prior 'til about 20-30min after I just sip and it's OK.had a bit of a problem with the Azithromyacin (besides the medicare 6 pill limit per mailorder fiasco/circus act) making me nausiated, but now wait about 15-20min after lunch to take it, and no stomach problems :-)Just started the pulse today - doing fine so far even with empty stomach - no problem with nausia at all...

Hi BatGirl,You seem to be moving awfully fast. Exactly when did you start on the antibiotics?Phil 

Finished first pulse yesterday - the whole month went much better than I imagined, but it was only the first..Did develop a bad lower lumbar/hips area ache that started a few days before the pulse, but as the pulse went on it got better and better day by day - could this be some side effect or would it be unrelated?

Did have crushed disc on third lumbar as a teenager, but last xray (after years of my inversion table) has the doc's saying the disc appears to have never been damaged (ie - full recovery, can't tell it was even injured...). But no injuries to the hips that I can remember...Anyway - anyone know the relivance of my CPn IgG being 1:512? (other than being higher than the threshold of the 1:16)Backache has almost completly left... seems replaced by the most awful nasty stuff coming out during bowel movements. Everything from soft stools to full flow gushing! Weird slimy green crap, etc. Guess this is the die off from my first cycle, eh? Not too bad I guess :-]

Batgirl. That is a high reading, although David has seen higher, but the girl with a reading twice as high made a full recovery.As for the nasty stuff, you are taking probiotics every day, I hope.  Take them at least two hours apart from any antibiotics and it should cure the problem.  If yu don’t you will be getting rid of a lot more than dead cpn, and a lot of what you are getting rid of, you need to keep!……………………………..Sarah 

Thanks, Sara... so I guess the high reading means I'm a good candidate for the CPn version of MS... and the choice to switch from avonexpen to CAP was what I thought it was... another sign from God (how I came across the vandy proto is an epic story).The Boost Plus I use has "Prebiotics"(?), and the 'horse pill' multivitamin (NewChapter 40+ every womans one daily) is probiotic whole-food complexed (non-GMO, too). The NAC has antioxidants..

Whatever your reading, CAP is better than avonex!...........................Sarah

My third pulse gave me pains in my right arm like nothing I had ever known before but David’s second pulse made it seem as though he had a creature inside his skin, which would suddenly run up to his left shoulder, seem to stop then suddenly come back.  Weird!  With both of us it only happened the one time, though……………………………..Sarah

Batgirl - are you able to explain more about the thinking behind stopping abx before a liver function test?  I don't understand why we would do this.  I can understand that, if someone was on a short course of abx, testing whilst they are taking those abx might not give a true view of their usual liver function status.  But surely, when we are taking abx for years, testing whilst we are taking them would give a more accurate idea of our liver function than if we stop taking them.

In the Uk everything other than immuno suppresants is considered junk science. MS specialist in S.Wales says protocol is bogus and oxygen therapy. All they care about is getting people onto drug trials so they make money and write papers to get their Profesship.

I totally agree and understand what you are saying. Medical world in Canada is also laden with many problems. PM me if you want more info.

Finished fourth pulse a dozen days ago, and a dozen days away from the next one. Feeling pretty great at this mid-point of my monthly CAP. The fourth pulse was bizzare - my left knee (where I'd injured it a couple of years ago, but only gives me occasionally a bit of stiffness) decided to just go into total crippling pain from a few days before the pulse began to a week afterwards - had to bring out my knee brace to do my daily walks (the few I could manage). Suddenly, the pain disappeared totally a few days ago, and there seems to be no stiffness...But, I can feel the usual respratory gook beginning to get ready for the upcoming pulse... been doing this just before every pulse - starts a week to a few days before the pulse, coughing up handfulls of creamy gook ~ then this dissappears about half way thru the pulse.btw-My only apprehension for these pulses is that all the other ABx's I take are coated, but this three times a day for a week thing is not coated, ALWAYS hangs at the back of my half numb throat (left half of lips/tounge/mouth=numb), leaves the taste from heck there, but is otherwise OK... stomach likes them. I just have to be sure when I 'go for it' and do the anxious toss as far back as I can, that I don't asperate the thing, heh, heh.