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An update. I have now taken a few long doses of flagyl. The first and second time I actually only took half the proper dose by accident, unfortunately. The only thing I noticed was that I was sleeping a lot better. Now that I'm taking the full dose, I'm actually extremely tired, though it isn't stopping me from doing anything, I just look forward very much to bed. And, unfortunately, I've had an embarassingly upset stomach pretty constantly. Probiotics don't seem to be helping. I'm not sure exactly what to do exactly about that.

Well, if your only reaction to flagyl so far is increased tiredness, you are one of the lucky ones! When you talk about the constantly upset stomach, though, is it just with flagyl or is it literally all of the time? I had it for a short time when first taking abx but it soon righted itself. You might find it is due to a variety of things if it is the latter. Too much NAC for your system for starters, or dare I say it, too much pomegranate juice! I know you have a predilection for the stuff. The other thing is, the organism can, with some people really get into the intestinal tissue, so when it starts being removed, you know about it. In this instance, it won't last forever. You might also try a probiotic containing FOS (fructooligosaccharide) or FOS separately. This page contains both:

http://search.store.yahoo.com/cgi-bin/n ... &query=FOS

Sarah

After Sarah's message I started to go back through calendar. I'm guessing ABX has contributed to upset, but there are other possible reasons. The upset started about the same time that I moved to a new country/city/job with some stress. And, thanks to Melody's compelling posts I also started an extremely low sat fat diet which may have caused some distress. I think I'll see in a couple of weeks if its still a problem and maybe try to give up ABX for a while if it is.

Lizz,

The thing is, it is unadvisable just to "give up abx for a while" because there have been other people who don't post anywhere who have done so for one reason or another and they regret it. You do really need to keep on with it, in the expectation that CPn is the cause of MS. If you do stop prematurely and start regressing you will have to start all over again. I didn't know that your going to San Francisco was because you were starting a completely new job: I thought it was just for an interview. That is enough in its own right to completely stew up your stomach upset. Please stick with it, for your own good: I know of people over here who were benefiting greatly, but just gave up because of a G.I incident or whatever who have now completely regressed to how they were before. Carry on and in a few years time you won't even have to think about all this.

Have a look, if you have time, at CPn Helpand you will find tonnes of relevant info, both from the physicians and the patients!

Sarah

And are you taking plenty of "gut bugs} and/or yoghurt?
Somedays I must take 3 pills of acidophilus.
Rica

Thanks to both Sarah and Rica for your suggestions. The stomach upset, as Sarah foresaw, did ease up. It was quite distressing, made me drop out of some activities, so that is a big boost. I'm continuing my flagyl pulses, roughly five days on an three days off. I guess I just do that for a couple of months....and then see. And I'm meditating, rather diligently, the maharashi/tm thing, I'm in California now, after all, and stress can't be helpful in this thing.

I’ve now been on ABX ten months. I started taking in April/05, three months after my first episode & subsequent diagnosis. Prior to that episode I had no neurological symptoms.

During first 3-4 months of ABX I had some improvements (loss of hermettes sign), which could have been the ABX but equally could have been normal remission after the initial episode. Since September there really hasn’t been any change, despite regular flagyl pulses which I have now steadied at one week every three weeks.

I still have tingling/numbness in fingers, still have trembling/bubbling feelings in legs. I posted once that I thought my double vision was getting better but I think I misjudged what was triggering it, in fact it is pretty constant, coming on when I get to a certain point of over exertion/ over heating. As per previous posts, I think there has been a slight development of new symptoms, none of them striking, but progression none the less.

None of this is terribly encouraging, but at least I’m not progressing in a dramatic way. I’m going to continue at least to 1 full year (a recent email from Dr. Stratton suggested that he is leaning to 3 years for full treatment). My reasoning is that even if there is a chance that ABX just helps me more or less tread water for a while it will be worthwhile in giving me time to wait for other treatments to become available.
My older sister, who has MS, dx'ed at same age, and with similarities in how dx was made, progressed rapidly on CRABS so I’m unenthusiastic about that approach.

I’m taking heaps of supplements, of course, and have also taken up a pretty low saturated fat diet. Its possible that either of these, rather than the ABX, are helping slow down the disease. I am also taking some real measures to reduce stress which, as with many, causes my symptoms to worsen significantly. I have followed thread on stress hormones with interest. The strongest link between my sister and me is real early stress in our lives.

The flagyl pulses are more problematic than they were at the start. The other drugs aren’t bothering me too much, after considerable distress a while ago my stomach has settled down, although it still rather tender and gets upset easily.

Other thoughts. I think my immune system has taken a turn. Immediately after starting ABX I got shingles, and I now get minor cold sores with some regularity (I never had either before). I've no idea why that would be, but I've read that others have experienced same.

On the other hand, after the first weeks on flagyl (during which I got a long and nasty flu) I haven’t been sick at all, rather remarkably, even though I declined being vaccinated and one or more co workers around me have been ill pretty much constantly. In the past, I picked up everything, and always got flu two to four times in winter.

I think my immune system is stronger, either because of the supplements, or, this is slightly fanciful, maybe the ABX are taking care of some bacterial load (CpN or other) and leaving my system free to fight off viruses. I’m not really attached to the immune-system-goes-crazy-and-attacks-itself theory of MS so I think this is positive.

Thats about it.

Hi Lizz,

I always said that it was going to be difficult for you to tell what was what since you started treatment so early in the disease. What is very noticeable, though, is something both David and I have discovered: the fact that everyone around you can be sick but you yourself are fine. Everyone in David's lab has been off sick, but he was ok through it all. I thought I was going down with a cold but it only lasted one day. Who can say for certain whether it is the abx or the supplements, but whatever it is, your immune system is certainly strengthened by it. I must say with me that the abx were the main thing because the massively progressive disease halted almost as soon as I started them. The addition of supplements came later, apart from those I as already taking without much effect. I was also already eating a pretty low saturated fat diet.

As far as the flagyl goes, remember that you can move it around to when it is more convenient for you and I certainly have never taken it for more than five days at a time. I hope you are still enjoying California!

Sarah

Hi Lizz!
I want to share something here that may be news or not but I wanted to get it in. Shingles is a reactivation of the chilldhood disease chicken pox. That just happens to most people at some point in life.

Herpes simplex type 1 or cold sores are very common, but not universal. However it can be picked up from infected persons and they do not necessarily have to have a symptomatic (visible ) sore to be shedding virus. My husband always got cold sores, but me and my childhood family never did. After 13 years of marriage I picked up the virus from my husband and now get recurring cold sores also. Once you get it , it lives in the nerve ganglion and it comes out as a sore every once in a while, often when you are sick with a cold or fever. It is another of the herpes family of viruses which includes chicken pox, roseola, HHV6, HSV2 (genital herpes) and a whole other rash of them. All have an affinity for nerves in some way and that is why shingles break out along a single nerve path.

If you truly never had cold sores before (vs reactivation of a childhood infection that you have not noticed for years) then you have come in contact with it somewhere and picked up the virus. It's all probably stuff you knew but I just wanted to help if not. I personally have had one outbreak of cold sores in the 6 months I've been on treatment. That's less often for me.
blessings
marie

Lizz - You should have seen the look on my quite-famous neurologist's face when I told him at our first meeting that I did not believe my body had suddenly gone nuts and started attacking itself. I flat out said, "I do not believe in the autoimmune theory" right after the first comment and he looked at me like 'so, why are we here talking at all', then I dumped about sixteen pages of reading on antibiotics and chlamydia pneumoniae bacteria on him. He handled it fairly well after that, but it could have gone very badly!

As for the protocol, I have days when I wonder if it's really my miracle cure, but for the most part, I truly know it is. I promised myself one year no matter what and, as a lot of us over at CPn Help.org are seeing, sometimes dramatic change doesn't come for six and eight months.... and some are seeing improvements even two years down the road. I think Stratton is right; long-term is probably the ticket. I sure know I'm willing to take cheap, safe, easily available abx over the unknown, expensive and unreliable and unremarkable interferons, etc. So far, so good. Keep plugging!