This Is MS Multiple Sclerosis Knowledge & Support Community

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!!
Lexy

Congratulations to you both on starting antibiotic treatment. Wow! You guys really went to town. Most people start with a three month trial with one antibiotic, say doxycycline, and then introduce the others slowly. I had aching joints when I first introduced metronidazole, but that was six months after starting minocycline on it's own. It's no wonder J has had some severe reactions, but hopefully they're mostly over. Good luck to you both.

Colin

Lexy- It's rare that anyone in treatment has such an acute a third party observor reporting on their treatment reactions and process. Most of us are lucky to remember what we did this morning, let alone what we took and what happened! Especially your observations of Jim's degeneration of walking and balance in response to the abx doses and flagyl. You present such a clear picture of the connection between killing Cpn and neurological symptoms. This stuff doesn't happen to non-infected folks who take flagyl!

Now... if you are willing to parallel him with the same doses of abx for comparison, we'd have a matched set (MS and non-MS) to compare. Although then you might not be as clear an observor, if you have some Cpn creeping around (like David Wheldon) causing non-neurological problems!

I've followed your posts on CPn Help.org, but I like very much your clear presentation here, and seeing the story thus far all at once like this. Thanks.

Wonderful Lexy! very clear post. I wish you wer here to watch me and give me your astute observations
Marie

Thanks for your post - I just started supplements for abx treatment. I see my Dr. next Mon. in regards to doxy.
My plan is doxy for a month than add zithromax and flagyl in June.

I have had this for 10+ years and I have had NAC flu for over a week - I did not expect a response like this and not feeling 100% but thrilled that I may have this problem.

I plan to post weekly once I start antibotics as I feel it is very helpful hearing other stories so I can be prepared for what may happen.

It's been a month since my last posting---wow!

J has now done two other 2 pill pulses of Flagyl (I don't think those are really pulses ) and a full two day pulse.

Up to this point, J was feeling rather yucky. He was very "Frankensteiny", and coordination was off, eye pain increased.

He tolerated the two day pulse very well. By the end of day two, however, he felt immobilized again and went to bed very early. The next morning he awoke feeling pretty awesome--not really what I expected given the last few weeks. He has felt well since.

This evening we actually discussed his feeling like his "old self" for awhile. This has been happening for very short periods of time (5 minutes or so). J said the "old self" was back for a much longer time--much of the day.

We are still very early into this, but the old self is what we are searching for. We have patience and are taking it slowly. Next time we'll shoot for three days or more.

J actually can now say he is feeling better---better than he has since being diagnosed and better than when on Avonex and Tysabri. I don't know if this improvement trend is here to stay or is fleeting, time will tell.

Finally, this is my treatment log, so a guess I am allowed to state my opinion ---so here it is:

I believe everyone with Ms should try a proper empirical treatment of abx. Msers should then look for one of two things---a herxheimer reaction and worsening of symptoms or a slow and steady improvement. Conventional treatments need not be ceased, and in six months time one would know if abx are working. That's my opinion and I'm sticking to it.
Lexy

Hi Lexy, thank you so much for your detailed accounts and wishes for continued improvement!

Lexy - Give him my heartiest congratulations! Feels good to feel good again, doesn't it? And it should give YOU some peace for the first time in a while, too. Keep us updated. Every success is everyone's success and we celebrate it!

Here's quick update on J's progress---This is about 4 months into the abx treatment.
J completed what I will call a first real pulse of flagyl on May 3rd. This pulse was 4 days long. It completely kicked his butt. Not so much during the pulse but for an extended period after.

For about 3 weeks after the pulse he felt like he had MS again. He had all of his old symptoms including the fatigue. He had a very difficult time playing backyard baseball with the kids and vision issues. He also experienced emotional changes-irritablity, detachment--just not himself.

Finally, on last Wed. right after a very short episode of spastity in his leg, he soared to new heights of wellness. I believe he is reaping the rewards of this pulse. He has not felt this good for this long since before diagnosis.

He has had glimpses of feeling really well before ( an hour, half day, etc.) but never for days on end. During the last 5 days he has done a tremendous amount of physical work from morning to night, and even outlasted me in some increasing heat.

We will continue this until he feels normal all of the time--and we are very hopeful. How's that for strange?--MS and hopeful in the same sentence!
Lexy

Lexy - While we all 'know' this works, isn't it nice to KNOW it works? I'm so happy for him, and for YOU. I know how hard you worked to get to this point! I swear, the pulses especially, hit the exact places where the cpn lodges, so of course the MS symptoms are revisited. Let's just hope this is the last 'visit'.

Hi Lexy and Mack,

My own validation is my own recovered life and it is incredibly wonderful to hear others following the very rock-strewn path. I suspect that for some of us there will not be total recovery back to the complete person but I have said for a year that I would be grateful for what I have if I stopped here. So happy for you.

Rica

Lexy,
Great News - way to go!

Very happy for you!

Oh boy, Oh boy...........there is no way it has been over a year since I updated this! Time flies.

At the beginning of this log, I said I would keep this for others to read. I guess I didn't do a great job fulfilling that goal, but I am here to make amends now.

At the beginnng both Jim and I went into this treatment with a, "what the heck do we (he-actually) have to lose" attitude. We thought that maybe infection was the cause of a "subset" of MS cases...blah,blah,blah. To be honest, with the kind of luck we had had the two years prior, I thought Jim probably was not in the lucky subset. But, alas, Tysabri was off the market, the doctors flummoxed our daughter's Kawasaki diagnosis and treatment, so we were left with a sinking feeling with regard to the medical establishment and how much they actually knew. Ah, the perfect setup for trying something that might work or at least wouldn't kill Jim!

Now, Jim has been on abx for almost 17 months.

Very early into treatment I witnessed reactions to abx in Jim that were out of the ordinary--after all abx had always made me feel much better (not worse) and I never had all of the strange reactions that Jim did at the outset of treatment of MS with abx.

I guess for some there are many reasons to explain someone with MS having strange reactions to abx--some people say,"people with MS shouldn't take abx" other say, " these (reactions) are strictly reactions to the drug"--as if one is allergic or supremely sensitive. Others say, "it must be the high dosages the he is on"--actually he has never been on "high dosages" There is one explanation that really does explain it, however.

In Jim's case (a person dx'd with MS) he took abx that were effective in killing a bacteria that caused MS symptoms and he had the classic die-off reaction or Herxheimer reaction, if you will. These die-off reactions were followed by a clinical improvement in his condition over time. Every marker with which one measures progression of MS has improved.

He feels better!, has been able to not only continue to work in his very demanding field but to excel. No more fatigue, no more heat sensitivity, no more balance issues...I could go on.

His neurologic exams have improved-his left leg once weaker is now equally strong, his reflexes are no longer those of an MS patient---he was essentially normal at his last exam. This was from the neuro who knows NOTHING of Jim's treatment with abx! Yes, that's right, we lie (for very important reasons) by the way. So this report from a doctor who is completely blinded to our experiment. He outright said, "Jim, you are getting better. We don't know what to do with you." This was after the exam and after he looked at Jim's latest MRI----The radiologist I spoke to for the comparison from last year called it the same as last year----I was happy to hear this. But in the written report, he noted that things actually were not exactly the same---the MRI was better than last year. Of course, there was nothing enhancing--but the old stuff was less--in other words, the old lesions were smaller and less conspicuous.

Of course, this could all just be the natural course of MS for Jim----and we will have to wait a long time to know for sure, but I am skeptical of this notion for a couple of reasons...here's why.

Jim has pretty extensive amounts of lesions in his brain. From the radiologists best estimate Jim has had MS for over 15 years--he's been a little lesion creating machine for quite awhile. Even after starting Avonex there were new lesions. So why after all this time would his brain go silent? Ok, I know that when someone goes Secondary Progressive their brains stop lighting up...........but Jim is clearly not going south...He is the GOD d'md energizer bunny, for heaven's sake! In my mind, his MRI shows progress toward getting better.

Secondly, even though I wanted to fool myself, after Jim's exacerbation(2004) he was not his old self. Over the next year he did not return to wellness--there was progression. He struggled with fatigue, balance, some eye issues. He never returned to a place where he felt like he didn't have MS. So, if Jim now is just in a place of remission in normal relapse/remitting MS it's news to us. What has happened over the last 17 months was a returning to wellness--not just remission.

It's not over yet, Jim remains on abx and will for awhile. He is not perfect (as he still has down days--usually associated with adding a new abx) but is still improving. I guess Jim was in the lucky "subset" of people with MS who actually have bacterial infections causing their disease. But we have rotten luck, so I am inclined to think that doctors and people treating MS with abx might just be on to something more than a "subset." Time will tell and even if it takes me another year, I'll be back to update this log!

Oh, thank you for this! I got a little chill, reading the end paragraph. Just yesterday, I was thinking 'I am back to normal'. I am SO busy, I have to remind myself to take my abx and adjuncts. I sleep six hours most nights, when I had gotten to the point of sleeping nine, then napping for an hour or more after work and still never feeling well-rested. I am now more physically active than at most times in my life and I am restoring a three storey house while working a very demanding full-time job.

To me, it sounds like Jim's 'normal' is like mine; better than it has been in a long time and maybe better than it's EVER been. Considering we were diagnosed with an INCURABLE disease, I'd say we are either beneficiaries of the same miracle or the cure is in hand. I'm feeling pretty confident about the cure.

Thanks for the update - it is all great news, I am also hoping I fall into the MS bacterial infection segment of population.

Your story gave me chills as well and I could hardly read it to my husband due to many happy tears for you and Jim.