Anecdote's personal treatment regime

[SarahLonglands]

A few days after my last update, David took my neuro by surprise when he was calmly having his lunch in the Medical Institute, by plonking himself down in front of the man, so he had to talk and did actually admit that my improvement had been beyond all expectation. What he means by this I am not quite sure. The optimistic side of me immediately thought of trials and so on, but my alter ego pessimist soon took hold: the man is a specialist in epilepsy, not MS, whereas his MS mates at Addenbrooke's are totally in love with Campath, which does nothing for people with even quite early SPMS. If I had left myself in their care I would now be stuck in an electric wheelchair which I could use with just my left hand, until that gave out as well. Although my MS had turned from relatively benign into very rapidly progressive, it had only been like that for three years at most, so the antibiotics kicked in nearly straight away. I managed not to get 'flu or anything like that in the first few months, so no exacerbations of symptoms. You can feel pretty awful sometimes for quite a few months, whereas some people just feel a little more tired than usual whilst on the metronidizole.

Now as a continuation of my last proper update, I can stand on either my left or right foot and, more important to me, I have regained some spatial awareness skills which had been lacking for quite a few years. I was finding drawing rather more difficult than previously. This is quite difficult to explain without being able to demonstrate, but just drawing the outline of something was quite difficult: I could very easily put things in the wrong place and just not see it until I had started painting. I only realised over the last few days that I don't do this anymore. It might seem like nothing to many people but to someone who makes her living from art, it is no mean thing, so I must have done a major bit of rerouting there.

Sarah

[Brainteaser]

Hi Sarah,

I very much enjoy reading your posts. They are very informative and it is fantastic to hear of your successes! Of others you know who have tried the antibiotic regime, all seem to be progressing or am I mis-reading the situation? Has anyone you know of, not improved on the regime?

Keep up the good work. It is very inspirational!

Regards & thanks,
Phil.

PS. I have commenced the regime myself recently but I think it is early days still.

[SarahLonglands]

Hi Phil,

Firstly, not everyone I know who is trying this regime posts on this site, but in replying I am talking about people who know I will be using them as an example.

Nobody has been on it for as long as I have, which is why the forum is a bit quiet at the moment: I cautioned people against posting too soon because it can be a very roller coaster kind of experience for many people so some days they won't be at all sure if they are getting better or not. Believe me, I know, but then again I didn't start posting anywhere until after my second scan, which so totally astonished the radiologist.

There have been a few people with long standing progressive disease who have not benefited at all, but the problem is you can't say how long the progression ha to be in place before the disease becomes entirely auto-immune. I might have been deemed one of those people because I was definitely firmly in the progressive stage: I had my last proper relapse in the summer of 2001, which affected my walking most of all. I managed to pull back somewhat from that, for a few months, but then it started to slowly progress. Then my hand started to be affected. I was in the middle of a big commission which I was determined to get finished. I somehow managed to with the help of an adjustable framework which David made for me to lean my hands on, then I lost it completely and he had to finish varnishing the six paintings for me.

On the other hand there have been people who have made very dramatic and trouble free improvements then gone on to get on with their lives. Unless David contacts them he doesn't hear from them. There is one chap who suddenly found himself running for his car, about to run out of time in the car park, who was also given a position with much more responsibility at work. Now I don't want to sound like some of the Aimspro blurb here: he wasn't that badly disabled to start with, but running he just couldn't manage. Of course this is the problem with relapsing remitting disease: how can one say that he isn't just going through a very long remission? Well, under an MRI there is always activity going on somewhere even if you don't show signs on the surface. That is what so astonished my radiologist: total cessation of activity, no new lesions and diminishing existing ones.

So, I wish you good luck with your treatment. If you are still in the very early stages, especially with the Australian winter approaching, try to avoid getting 'flu, because it might cause a slight relapse due to the bacterial load. However, thinking about it, you still have a few months to go yet!

Take care,

Sarah

[Brainteaser]

Thanks again Sarah,

I hear what you say.....the first rule of MS is 'variation', so I should proceed with hope but not over-expectantly. Nonetheless, it is encouraging to hear of the successful outcomes of this treatment for PwMS.

My MS history has been mainly one of progression over a long period of time so possibly I might not be the most ideal candidate for the treatment, but then it is definitely worth a try. Also, scientifically speaking, the treatment theory makes sense to a non-scientific person such as myself. Additionally, the treatment is supported whole-heartedly by my GP, based on his independent reading and analysis, so this is all quite encouraging.

As for 'the flu', curiously I have not experienced any significant problem with colds and flu for a number of years. I have sinus problems and all the usual MS difficulties, but I have been pretty right 'touch wood' with general health issues. I think this might be as a result of all the supplements and my continued careful diet, but who knows? Winter here?!......we can only hope, as it will be a fatiguing 30 degrees over the next few days!

I'll certainly keep you informed of any improvements from my antibiotic regime, hopefully in the near future!

Regards,
Phil

[Baumer]

Hi Sarah,

Thanks for all the time you spend to put out the info on your antibiotic regimen. I have a few questions that I hope you or someone else reading the forum can answer. I was on Tysabri for one infusion before that got yanked, so now I am looking at other options. Basically, I want to arm myself with some info before I go back to see my neuro.

I've been trying to look up the antibiotics that are recommended for this corse of treatment. I have found doxycycline and metronidazole, but I can't find rifampicin or azithromycin listed on my pharmacy or insurance website. Are these also known by some other name? I can find an antibiotic named rifampin, but it didn't say it was also known as rifampicin, so I'm inclined to think they are two totally different antibiotics.

I am also a little confused on the treatment called out by your husbands paper as far as the roxithromycin is concerned. It states that the rifampicin (which I can't find info on) may be substituted for the roxithromycin, but later on the page it states to use azithromycin instead of roxithromycin. Should one or the other be used, or is he suggesting both?

Thanks for any input on this matter.

Aaron

[Baumer]

Okay, I did some more digging and found that rifampin and rifampicin are indeed the same drug. Also, zithromax is the name for azithromycin. But the dosage of the azithromycin is still a question as is the use of it with, without, or instead of rifampicin.

Thanks again for you time.
Aaron

[SarahLonglands]

Hello Aaron,

Yes, rifampicin is just the generic name for rifampin, in the same way that metronidizole is the generic name for flagyl.

What I would suggest you do is read Daunted's antibiotic log and ask him about dosings and so on. He has actually seen Dr Michael Powell in Sacramento and uses the Vanderbilt regime, very similar to David's except roxithromycin which you can't get in the US. Mike Powell is a rheumatologist who sees many people with rheumatoid arthritis, fibromyalgia and so on. I don't know how your neurologist will take to antibiotics, but it might be worth, if your neuro won't prescribe, going to see him. Or, if your neuro just needs a bit of persuasion, get him to contact Mike Powell directly. It did occur to me that now the plug has been pulled on Tysabri, some neuros might be a bit more open to new ideas.

Funnily enough, although we didn't even have tysabri over here yet, after David forced himself on my neuro one lunchtime, a couple of weeks ago, he has at least admitted that my recovery was beyond all expectation, so that is something, at least.

Take care,

Sarah
.

[Baumer]

Sarah,

Thanks for your quick response. I will definitely look at Daunted's log and figure out what I need to suggest to my neuro. Thanks for all the help.

Aaron

[Daunted]

Baumer,

Your neurologist can also contact Dr. Charles Stratton at Vanderbilt University, and request the latest protocol for elimination of CPn. He does release it to physicians for compassionate use.

[SarahLonglands]

See my March 18 post on this thread in General Discussions:
http://thisisms.com/modules.php?name=Fo ... pic&t=1000

Treez wrote
Quote:
I must commend / compliment Dignan on the positive outlook of the future, and putting the recent failures behind us. I will add......who knows what "developments" may come to light in the nearer future than drug trials.

This is very true. There is very little likelihood of a large scale trial for antibiotics treating MS as having an infective cause, for instance, because the money just isn't there. However, there are other 'developments' apart from drug trials. 'Big oaks from little acorns grow' as the saying goes. Not only some GPs but also the odd neurologist here and there are saying that the antibiotics involved are so relatively harmless that one might as well give it a try. You then need just patience and the realisation that you might somedays even feel a bit worse.

Quote:
Keep in mind there are probably numerous studies going on presently that we don't know about. We only hear about the ones in the "spotlight".


There certainly are!

Sarah

It is worth tormenting both your GP and neurologist about this. I'm sure Charles Stratton would like to treat everyone if he could, but if you do a search on his name, you will see that he does a phenomenal amount of work on other things microbiological. Some people have managed to speak to Him personally, though, but he is only human like us all.

[SarahLonglands]

Well, time for a quick update. I have just finished my latest booster dose of antibiotics, or 'nasty antibiotics' as one GP has called them. It is now 21 months since I first started treatment, which I find quite hard to believe sometimes. I still have some way to go, but have had nothing adverse neurologically in that time. It does help that I don't have children so there was no over abundance of germs floating around in that first six months of starting, so no 'flu or anything like that and no relapse.

I am working hard at improving my walking, but not overdoing it and I must say this exercise is bearing fruit. I am getting better at walking over uneven ground, which last year I still found terribly difficult.

We are both keen vegetable gardeners, so a lot of work is involved at this time of year, but apart from the fact that I am getting more sure footed when walking over all the bumps and crevasses in our vegetable garden, I have noticed something else. I am always prone to insect bites: they can see me coming for miles. I remember cycling round the Carmargue about 12 years ago. It was a hot day, so I had to stop for a drink, but as soon as I did, the entire mosquito population of the Rhone Valley headed for my legs and the next day I was covered with weeping blisters. My fault for wearing shorts, I suppose, but at least these were comparatively polite French mosquitoes, so I don't get quite so much oedema as back home. Last year, though, I noticed that I was still getting bitten, but the results were no where near as brutal. This last weekend, though, the insects were out in force, but the resulting bites were even more benign than last year. The bites which I got on Saturday have all but disappeared and the ones I got yesterday are a bit itchy still, but that is all. I haven't even taken anything for them, as an experiment. It must have been one way my over active immune system showed itself, but no longer. Thinking back, I got bitten a lot as a child, but nothing like as bad as a few years ago. I first noticed this over active immune system when I was working for my MA at the Slade School. I won't tell you what happened, because it was too gruesome. Yes, I know the antibiotics might have dampened them down this time, but I haven't taken any since Friday so the effect should have worn off by now, so I'll go out and pick some purple sprouting for dinner.

Sarah

[BalsaBoy]

Hi Sarah

It's now three weeks since I started on doxycycline. During the first week I experienced great improvement in my balance and walking ability. Unfortunately this hasn't been sustained and although I'm still better than I was pre doxy I was wondering whether it was at all possible that the brand of Doxy could make a difference? The reason I ask is that for the first four days of the regime I was given Vibromycin and since then I've been using Vibrox. Could this make a difference or is there another explanation?

Jim

[SarahLonglands]

Hi Jim,

No, the brand shouldn't make any difference, it just sounds to me like part of the roller coaster ride will have to endure for a while. I did think the changes you reported at first might not last, but don't worry: you should have seen me when I changed from doxycycline to rifampicin! I was all over the place for a few days, but anyone who saw me might have thought I had been downing cognac with my morning coffee.

Sarah

[BalsaBoy]

Yeah, it looks like I jumped the gun. The initial results were just so unbelievably good. I take it that the fact there were immediate improvements is a good sign though?

[SarahLonglands]

Mais oui, monsieur!