Ok, here goes, it's time to start a treatment log.
I already keep one on CPn Help.org which is mostly for myself. This one I will keep for others.
First, a little about us. J is my husband diagnosed in May 2004. Prior to his exacerbation he had eye floaters (while jogging), numbness in his pinky side of his right hand, interminent color change (for years) and a swallowing issue. All of these were dismissed by us as just strange things, except the swallowing which an ENT said was allergies.
Feb. of 2004 a sinus infection stopped J in his tracks. He just couldn't shake it. A course of abx and steroids didn't help and a strange feeling radiated down J's right side of his face. This feeling got progressively worse and was later accompanied by a feeling of euphoria. Referred to an ENT, he immediatley said it sounded "neurological" and sent J for an MRI.
MRI results-lesions on brain and spine, lp--still don't know, but I think they used it more to rule other things out not MS in. May- the diagnosis, Avonex, and devastation.
I read furiously, awaited Tysabri--was bound and determined to be on it in Dec. And he was, the proud second patient in the state of Pa to receive an infusion. Infusions in Dec, Jan, Feb--also stayed on Avonex. Hey, we were listening to the neuro.
During this time, I also began introducing J to supplements that might be helpful (Thanks to those on Thisisms for all of that!) We introduced them slowly. Interestingly, J pronounced feeling better from fish oil and NAC, but still took his D,E,ALC--etc.
The Tysabri debacle and a strange event with our 8 year old in Aug of 2005 caused a bell to hit me on the head--I had had an awakening. My child was afflicted with Kawasaki syndrome and our doctor completely botched her treatment, ignored my insistence that it might be Kawasaki, and pretty much failed entirley at being intelligent. (An aside-Every parent should know a little something about Kawasaki because there is a very short window for treatment and the consequences for non-treatment can be VERY serious)
The stage was set for my sea change of thought and while researching Kawasaki (by the way ,a disease of unknown etiology but that presents as infectious in nature-some have suggested it is autoimmune) I again dug up lots of Lyme info and revisited the possible Cpn connection in MS.
I presented this all to J and after much deliberation, many questions and some handwringing we both decided to give it a go.
J has been on the regimen for just over 8 weeks---not long, I know, but long enough to have had some very strange things happen. We are approaching this experiment like this---I know a lot, I read and research and know what to expect. J does not. Of course, he knows he's on abx and I did share that he could feel worse when taking them, but he knows of no expected results. He expresses how he feels and I then tell him if this is something I have read about.
He began by adding the supplements suggested for the Stratton/Wheldon protocol. He bumped his NAC does from 600-1200mg. He reproted feeling like he was getting the flu and had "movement" in his sinuses. The second night he had aching joints in bed.
On Dec 6th 2005 he began Doxycycline 100mg 2x per day. He felt a bit more fatigue, but overall not much change. In two weeks he pronounced, "I'm feeling pretty good" I was ever watchful for the classic "herx" but was prepared to do without it. That all changed when he added the first azithromycin on Dec. 20th. His reactions took me completely by surprise. They were nothing short of profound. If MS is autoimmune why was he reacting like this? He had flares in all of his MS "spots" Lip burn, pronounced fatigue, "eye" fatigue--where it feels like they are being forced shut, shooting, stabbing eye pain, pain on the right side of his neck, head ache, aches in his joints and shoulder muscles. Very low body temp-95.3 and 95.7 on two thermometers. He also was very teary (very unusual for J). These reactions did not all happen similtaneously, but occured over the course of two days.
I really was blown away. I honestly did not expect to have such a clear cause and effect result. It had to have been the addition of the zith. J did not immediately go to a 3x a week zith dose because he had to work and the effects were hard to cope with. Basically, everytime he took zith he felt like garbage.
He finally was able to tolerate the 3x a week zith and could go to work while taking it.
We were both anxious to give the flagyl a try so we decided Monday, March 8th would be the day. J would take one pill--no more for the trial pulse. He felt lip burn about an hour after taking it and his balance went, as well. He became clumsy (spilled a drink at lunch-this is not a usual thing for him) and could not find the correct words to express himself. He was very brainfoggy and cried like a baby (kind of cute, actually). He felt generally, lousy. We pushed it a little and bravely had him take a second pill in the afternoon with no greater ill effects.
The 9th was so-so. Not great, but he was not bedridden either. Wed afternoon he took another zith and was hit very hard. "Eye" fatigue and bed by 6:30 feeling immobilized-he literally did not want to move. Thursday was again ok, not great.
After 8 weeks--is he better? He says he feels a bit better (when he's not feeling lousy) Fatigue is lessened, balance is much better, less pain behind the eyes. He certainly still knows he has MS and does not feel like his old self. He will have another MRI in Aug 2006 and we have many to compare to (He is the most mri'ed MSer outside of a clinical trial, I'm sure). I will update this log as necessary.
I take the adverse reaction to abx as a very positive sign, since we don't have a lot of disability to reverse that is our only "proof" that this is working right know.
This is a awful long read and I promise I won't ever take up this much space again!!