I realize this is an old thread - but the title made me click on it and I thought I'd throw in my experience.
2005 I suffered from extreme fatigue - hadn't really felt good in several year..... passed it off to life stress, etc.
I developed patchy blindness in both eyes. MRI revealed 20 brain lesions (3 active & angry), & 1 spinal lesion. Spinal positive for OCB. Methyl Malonic Acid (assoc. w/B12 deficiency) was sky high (>550). They gave me IV Steroids for 5 days and started me on Copaxone (they recommended Avonex but I chose Copaxone).
I researched online and found the "Best Bet Diet" and began that strictly (continued that for 9 months without any "cheating") - also started an extensive regimen of supplements and vitamins.
Eyes recovered after 4 weeks of being unable to drive or read.
I developed severe tingling in my lower legs and lower arms (stocking-glove), a night I would wake with my entire body buzzing, and my left hand began to lose strength and function. I continued to have debilitating fatigue.
Some improvement with the diet, began Naltrexone (LDN) at the recommendation of my Neuro to try and stop the tingling which was driving me mad. Fatigue very high. Quit Copaxone due to multiple site reactions and minimal improvement.
Some improvement in the tingling - had read about abx at this point and talked to Neuro and after signing a waiver, he agreed to prescribe.
Doxycycline 200mg - Fluish reaction, felt yucky, subsided within a week or two.
Started Azithromycon 250mg - don't remember much reaction.
Began to feel better finally - fatigue lessened, mental fog cleared very quickly.
Started Metronidazole 500mg - Ahhh man within an hour of taking the first pill thought I was going to DIE. Had to stop after 3 days of being unable to get out of bed for more than an hour at a time, felt utterly poisoned. Excessive clear nasal discharge, night sweats, chills - YUCK.
Continued pulses of Metronidazole - 5 days at a time, once a month.
Have been taking the LDN, Doxy, Azith, and Flagyl since 2006 - last Flagyl pulse was a breeze.
2006 Showed one possible new lesion, none enhancing.
2007 MRI showed no progression at all - NO new lesions!
My neuro is hesitant to buy in to the abx theory - but he refills my scripts and is very impressed with my progress and dramatic recovery. So sick, 20 lesions, rapid decline to my current NO symptoms and feel great...
I have seen Drs from the famous "Baird Clinic" / "Jacobs Neurological" in Buffalo NY - and they are 100% against antibiotics - or anything that isn't Avonex or Steroids.
Saw one in October 2005 and spoke to one last week - despite my vast improvement, the (former) Baird Dr. (had moved to my Neuro's group and I got her because my Dr. was away at a conference) still tried to convince me that Abx didn't work and that I should go on steroids immediately...!
WHY are neuros so quick to discount new ideas?
Particularly when there IS improvement?
If I was going downhill, I can see a Dr. trying to convince me to try something else - but with my vast improvement... What is the threat?
Especially if starting EARLY is so very important in preventing permanent disability.
BTW - did I mention that I now have NO symptoms and feel GREAT??
Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010