My story

Submitted by mrhodes40 on Fri, 2006-02-17 22:29

Hello! I have been blogging my progress as I have been on the Wheldon/VU protocol but the time has come for a patient story. I am now 6 months into treatment. If you would like to read my story of getting MS please see my blogs.

I started treatment in September of '05. After months of reading about it and lining up my doctor (a chronic illness specialist who uses abx regularly for "autoimmunity") I felt prepared to cope with the regimen as I was finally well convinced that the overall research on CPn made it a plausible candidate for the immune activation etc we see in MS. Though it is not proven, it seemed compelling, and my symptoms were at a point that I was out of traditional options I was willing to undertake. I was offered novantrone as the next logical step, but the cardiac difficulties that are possible with that drug left me unwilling to participate as my family history is bad for heart disease.

I felt stuck with only the copaxone I'd been taking since it's release which I've never felt did much for me, though my doctor is convinced it has kept me doing "so well".

Let me tell you what is meant by "so well".  I have SPMS after 15 years of MS ( absolutely on schedule for the natural course of the disease in spite of the fact I was "benign" before copaxone-I could still jog when I started it)  and do not necessarily agree that after 10 years of copaxone and $180,000 of money spent on it that SPMS at this point is me doing "so well". It seems to me the company is the one doing "so well" but in fact, it is true that I may have been worse if I had not taken it. It's frustrating that I cannot know the answser to that and makes it hard to argue with the logic that it "must have" helped. 

I had gone the LDN route also with no improvement at all in my personal case though I did have a greater sense of well being on it. I am not taking it now, but am taking copaxone. Suspenders and belt approach as Jim says!  Since it is possible that there is a subset with this issue rather than it being the cause of all MS, by doing both I am covering my bets.  I do wish I had been on interferon though as it is somewhat anti chlamydial.

I did not react much to the doxy which I took alone for one month at MD request. I then added azith and felt a little more tired, and I started to fall more often. This was a subtle worsening that crept up on me, not a sudden reaction that seemed related to the abx. and this results in a sort of vagueness about how you are doing and what is related to what. For example in the case of falling, if it happened immediately after the antibiotics you'd see tha tas a reaction, but in my case the falls were not seemingly related to anything, they just started to happen as if I had gotten more MS symptoms.

After about a month I began to have more energy and found myself doing more and definitely feeling less irritable and "on my last nerve" than I had pre abx. I had some days wherein I accomplished a lot more than was normal for me, even one day after a full day electing to go look at the moon on the beach with my sweet husband and feeling happy to do so, not like was forcing myself against fatigue. This was an improvement that crept up on me. My massage therapist also started to say that my muscles felt very different, releasing as a normal person's do to the massage, not hanging on to spasm the whole time. This was objective as I've seen her weekly for a year or more. So that was a great piece of information.

I still have more energy than I did before but it feels "normal" to me now, not special and noticeable. This is one of the hard things is that things are not dramatic and sudden and you gradually accommodate to the gains and changes as you go thus not necessarily noticing them. It's good if you have some kind of objective way to tell if you are "better" like how far you can walk or something of that nature I finally took my first flagy after much angst over it early in Dec. One pill one time the first time then I analyzed every twitch and tremor, not much happened though I was nauseous. So the 20th-21 I did two days of flagyl. then stopped so Christmas would not be a problem. I fell a couple of times that week. Actually I fell a lot in December truth be told. I worried I was having an exacerbation. Then the Jan 3-8 I did a full pulse of flagyl. I did not again notice much but did fall a lot the remaining week and was walking very poorly the next week at work. Oddly, it did not feel that I took the flagyl and it was the cause of the falling. It felt more like a subtle worsening that crept up on me from nowhere and it did not a"feel" connected to the flagyl. then miraculously and suddenly on the 5th day post flagyl I was suddenly able to walk pretty well short distances. my gait was better and I felt as if a weight had lifted. And then something significant happened. I stopped needing the spasm med at night I have taken for years. I have now almost no spams and certainly EVEN WITHOUT THE MEDICINE less spasm than I had ON IT a couple months ago.

Finally! Something real I could know was not in any way related to wishful thinking or chance. I had another flagyl pulse feb 2-7 or so and I was still free of spasm med and did not get worse or anything in respect to the spasms during the pulse. This pulse I got cold sores day 4 so quit so I could take an antiviral (I really hate cold sores they scare me; I'm afraid I will get them in my eyes so I get a little weird and panicy every time. They also tend to cause worse MS symptoms a week or so later)This time I noticed no new improvement from flagyl, but nor did I get worse.

I have to say I still can't walk well at all. When I started this I was right on the cusp of needing a leg brace to keep my floppy foot up. In December I should have had one, it would have prevented some of those falls. I am thinking of getting one now. I actually have enough energy to walk a distance (where I did not before abx)but that floppy foot gets so floppy that I am at risk if I go longer than quarter mile. This was true before I started also, so I have not lost anything and though I was also floppy footed before treatment, I did not have the overall energy to walk a distance. Now I feel like I could if only that foot did not trip me. I have moments of better walking but not consistent and not getting better and better in a clear upward gain. It fluctuates and I feel worried maybe that nerve is gone from years of MS, but I have actually had some days where it seemed to work better for short distance so I tell myself just hang on it'll come.

I have to say the most difficult part of this is the mental games you play with yourself. Am I better? Is it working? What if it helps some people but not me? Oh gosh this is a real trial for a person mentally. It is comforting to know that it is SUPPOSED to take a long time so small tiny increases in function are good enough. Sarah still improves at 2+years. When I read other's stories I got the idea they did well fast and knew right away it was helping, and I also had the misperception that flagyl resulted in a sudden clear worsening . Neither of these are true in my experience. It takes a few days for flagyl to make you fall more or walk worse and it takes a week or so to get better other side and all this stuff changes subtly, almost imperceptibly so that overall you feel like it's a great big field of uncertainty.

So as a a tally of how I am doing at 6 months I have clear objective changes in muscles spasticity that the massage therapist can easily feel and a total stopping of spasm meds for nighttime spasms with less spasm now than with the med, definitely more energy, but walking is still a bugaboo for me due to floppy foot. It is the thing I want to improve the most but it has not responded much yet. I had one day where I was able to walk fairly well for a short distance, I assumed that I would get better and better from that simply by working at it but that has not been true. Particularly if I go any distance no matter how "fairly normal" the gait was at the beginning the floppiness is eventually just as it was-a completely flaccid foot. But at only 6 months and 4 flagyl pulses (one of those only 2 days), it is early yet. The times of fairly normal gait give me hope that eventually it may come back all the time.

If we assume that CPn is there at the location of that nerve as the area is cleared and other nearby nerves are freed of inflammation etc then it may come back I am grateful for the gains I have made.

I am thankful I have had the opportunity to do abx. I am better than I was in many important ways. Praise God and pass the antibiotics... So that is my patient story so far. Please read my blog for more details.. Marie

A new intallment to this patient story:

I am now at the 2 year mark.  My dropsy foot has remained dropsy and I have accepted that the black hole we saw on the MRI just prior to antibiotics starting was proably associated with foot and leg function on the right.  I still use a cane, though I rarely ever think about getting a foot brace now, so maybe it is a little better.  I can walk with a limp easily for 100 yards but after that I do a lot better if I have something to hold on to like a cane or a shopping cart.  This is so similar to my start point it is not worth trying to measure any differences.  I am still a self ascribed edss of about 5.5.

I did not talk much about my RA in the first part of this patient story, but it has been there from day one of course.  In fact, I came down with the "MS" and the "RA" the same week.  I got sick with the first cold sores I ever had had (HSV1) and went to bed with a fever for a week.  I came out with both RA and MS type symptoms.  Interestingly I also had been hiking with many severe bites 3 months prior to this event.  My first belief was that I had lyme because it fit so nicely the symptoms package and the idea I had was that the HSV1 set it off.  No one would buy my story back in '91 though, so no go on any antibiotics for lyme disease.  I was told I had "bad karma" by my rheumy, he did not find the idea of lyme at all interesting even with the sudden onset of both issues.

Now fast forward to the current time frame with that background and knowing I am now at 2 years of pulsed antibiotics.  My RA at nearly 2 years was still bad so Dr Stratton recommended for my doc that we should consider moving toward continuous as he felt that the RA would not respond to pulsed therapy.  I do not react too much to pulses so that was fine with me.  We started that in April '07 and it took 2 months to get to a really full time tini protocol.  Then I did about 3 weeks on and one off to see how that was, then moved to full time with an occassional "mini break" of one pill a day instead of 2 for several days if I get too depressed.  It is August 5 today and I am really comfortable with full time tini now.  I actually feel better on tini than off.  I hope to add something like rifampin or INH in December or so to see how I react to it.

Here's the scoop about the RA lab stuff.  Pre abx my rheumatoid factor was 270-very high, high enough for one of the DMARDs.  Normal is 14.  recently my RF was 130-still DMARD high but lower than it was.  This reflects seemingly less reaction of my body to my joints which I would expect if the germ in there is getting eradicated.  This may be an interesting way to monitor overall progress.  I guess right now I would say I am lucky to have RA!  I have something to monitor!

At this point in time I am taking nothing whatsoever for my RA.  Nothing. I use simple stuff like aspercream or salonpas (my favorite of everything--buy them like I buy bread and eggs) or capsaicin (pepper) and am OK.  This is very good.  On my last mini break (one tini a day for a week to clear out a little--this occured the last week of July) my joints were oddly painfree for a couple of days.  Today, a week back into the full doses, they are uncomfortable but bearable.

One other thing that has significantly developed is a coagulation problem called ISAC or variant antiphospholipid syndrome.  This is a coagulation problem which is well known in the alternative CFS treatment world and it is theorized in the medical literature as a coagulation issue related to infection.  It is also something that can be tested for with standard lab tests if one knows to test for it.  I take heparin for this issue and my labs are currently in the normal range.  Theoretically addressing it should greatly improve my response to antibiotic treatment.  We discovered I have this in March '07.

In a recent conversation with my husband I asked him if he thought the antibiotic treatment was working in light of my weak leg and its continued lack of function.  He said with no hesitation at all "you are vastly better.  You seemed before withdrawn and kind of depressed (mentioning the standard MSers ennui) Now you seem like YOU. "  My husband is a very conservative person and not at all given to exaggeration.  A precise and methodical person his word is absolutely true.  Everyone else agrees that my leg is the same but I am having much more stamina and energy than I used to and I am more my old self.  This is worthwhile all by itself. 

And hey, the rest of the MS researchers are working towards stem cell strategies and regenerative things.  It is possible I will be able to get one of those once I am stable and germ free .

But on another note, the Sylvia Lawry center has a self evaluation tool that makes it possible to evaluate where your progression is statitically supposed to be based on your data.  If I enter my 2 years ago data and see where I should be, I shoud have progressed by this point.  That I have not suggests to me that the antibiotics are stopping my progression. 

Continuous treatment is a different ball game than pulsed regimens.  It causes depression that needs to be respected, induces different longer reactions, and is not easy.  But I seem to be able to say that it is tolerable and at this point I prefer being on it because we seem to be seeing changes on the labs that are interesting.  I also seem to tolerate the depression better and better suggesting to me the depression of flagyl pulses is partly about the cytokines, not merely a side effect of the drug.

marie