Anecdote's personal treatment regime

Tell us what you are using to treat your MS-- and how you are doing.

Anecdote's personal treatment regime

Postby SarahLonglands » Sun Nov 14, 2004 9:50 am

Posted originally: Fri Jul 09, 2004 6:39 pm Post subject: Treating for Chlamydia pneumoniae - a possible cause of MS

Treatment:

rifampicin, 300mg twice a day
or, as originally started: doxycycline, 200mg once a day, but would have to be avoided during pregnancy
roxithromycin, 150mg twice a day (which could be substituted by azithromycin in the States)
B-12, 5000mcg sublingually every day
co-enzyme Q10 in large dosages
4000mg Fish Oil per day
Vitamins A,B,C,D,E, selenium and magnesium in large dosages
acidophilus, several capsules as required.
activated charcoal 8-12 capsules a day

Also, five day bouts every three weeks or so of:
metronidizole, 400mg three times a day

Recently added to my regime, early 2005, but because of this, am now not so assiduous in the amount of other supplements taken, especially the charcoal:
Acetyl L-carnitine 500mg maybe twice a day.
Useful because:
Carnitine and acetyl-L-carnitine both enhance immune function.
Acetyl-L-carnitine protects nerve cells from stress and deterioration, and may prevent Alzheimer's disease.
Acetyl-L-carnitine natuarlly increases mental energy and helps relieve depression.
Carnitine enhances liver function.Without optimal liver function, optimal health is not possible.
Courtesy of Robert Crayhon M.S.

It certainly helps against fatigue!

Alpha lipoic acid 300mg two or three times a day, as the anti-oxidant par excellence.

chlorella 12 tablets a day: they are only tiny and I manage to swallow them all in one go.

Yaeyama Chlorella is a single-celled algae, a whole food, containing zero binders, preservatives or fillers, but filled with 100% natural ingredients.

Millions worldwide are taking Chlorella because it:


Lessens the severity of an illness, and you recover more quickly from it
Relieves the effects of arthritis and fybromyalgia pain
Protects the brain from age-related memory loss
Normalizes blood pressure and promotes a lower 'bad' cholesterol count
Detoxifies the body, removing even heavy metals and pesticides
Protects against some cancer-causing agents found in food
Boosts the immune system, increasing the body's resistance to bacteria, viruses, and toxic chemicals
Regulates digestion and supports good bowel health


Copied from:
http://chlorella-europe.com/index.html

Especially if your disease is very active when first starting the treatment, it might be better to wait until you have been on the regime for six months before starting this, because boosting the immune system might not be advisable at this time.

(Started with the immunomodulatary doxycycline before moving to the completely non immunosupressant rifampicin.)

Treatment time aims to be non stop for maybe a couple of years, but actually only one year in the end, then back to doxycycline, which can be taken intermittently, taking three week courses every three months, with a week of metrononidizole during the second week.

The aim is to be MS free after this time, and so far I am succeeding, as my most recent MRI shows.

I must have had multiple sclerosis for about 15 years, looking back, in the relapsing remitting form, but the relapses were so minor, so far apart and so soon gone, that it never really occurred to me. As soon as I got over each attack I would forget about it and get on with life.

Things suddenly took a turn for the worse a couple of years ago though, when what was thought at the time to be a minor viral infection left me hardly able to walk across the room, with legs numb from the knees downward and severe vertigo. This somewhat cleared up after a number of weeks, but by no means completely. Then a major gynaecological operation a year later so traumatised my system that I began an inexorable downward spiral of SPMS. I was living in a kind of mental fog, not even realising how bad I was getting, until my first MRI scan and resultant diagnosis by a neurologist brought it home to me, in August last year: “secondary progressive multiple sclerosis. There is no treatment and no cure, so go home and find out what you can about the disease, see the MS nurse and then I will make an appointment to see you again”. This is not what an artist who had only recently finished the biggest commission so far in her career wants to hear, especially when she suddenly finds she has lost the use of her painting hand. Over the next few days I was completely distraught, thinking that I would probably never be able to paint again. What could I do? I began to realise that I was going so rapidly downhill and would soon have need of a wheelchair and worse. Well, I never did need that wheelchair or go to see the MS nurse and you can find out more by looking at:

http://www.davidwheldon.co.uk/ms_treatment.html

Back in August 2003, I could barely hold a paintbrush, never mind do anything with it. Now I can tackle a more than creditable full-page watercolour, (see below) and am getting more strength back by the day.

I had a second MRI scan a couple of months ago. The results of this were completely unexpected by the radiologist, who came rushing out of his room to show us the results. Not only were there no new lesions at all, but also the vast majority of the existing lesions were vastly diminished in both intensity and size. This is certainly not the normal course of events with someone with progressive MS.

Reason for this treatment:
Chlamydia pneumoniae as the supposed cause of MS

Sarah
Last edited by SarahLonglands on Mon Apr 25, 2005 10:11 am, edited 4 times in total.
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Postby SarahLonglands » Sun Nov 14, 2004 9:57 am

Posted originally: Tue Aug 17, 2004 11:18 am

I am currently awaiting another scan. If, as expected by both consultant microbiologist and consultant radiologist, it shows no adverse events, I will be stopping the 'full-time' antibiotics after about a year and moving to a regime of three months off, three weeks on, with a bout of metronidizole in the middle of that three weeks. This will mean going back to doxycycline rather than rifampicin, because you can't take that sporadically.

The radiologist is anxious to use the same machine and radiologist for the sake of absolute continuity, so I don't know when exactly yet, because the department is undergoing large scale redevelopment and of course, I can't just jump the queue because of who I am married to. Other people needs are far greater than mine.

If I feel really confident, I might just stop the full-time regime when I finish my current course of rifampicin: I think I have about another three weeks left.

Sarah :wink:
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Postby SarahLonglands » Sun Nov 14, 2004 10:02 am

Posted originally: Thu Sep 09, 2004 10:50 am

Well, on Tuesday I had my follow up MRI scan, luckily at very short notice because I always get terribly worried, not about the machine itself but what it is going to show. Its all very well feeling that you are doing so much better, but what might be going on behind the scenes? Very silly really, but I can’t help it. On Monday I could have walked the couple of miles to the hospital, given time, but yesterday? I was wobbling all over the place by lunchtime, so had to call a taxi.

The scan actually showed improvements beyond all expectations: some lesions on the outside edge had completely vanished and all the others where greatly diminished. There were no new lesions at all. This just does not happen with either of the progressive forms of the disease. The radiologist, who went through the scans with us, had never seen anything like it and is going to take the sequential scans to the neuroradiologists at both Addenbrookes, our regional neurology centre, and Oxford, to show them.

Very shortly now I will be reducing the antibiotics, maybe to just 2 roxithromycin a day, cutting down then to one a day, or maybe intermediate treatment with doxycycline for three weeks every now and then, with five day bursts of metronidizole in the middle of the three weeks. Personally, I would prefer the first option because metronidizole makes me deathly tired and also weepy, but we will see.

David is now treating several MS patients and chronic fatigue patients, very successfully. He gives adequate amounts of time to each one, explaining everything to them and telling them to email him whenever they want reassuring about something. A paper is still very much in the offing, but he keeps finding new and relevant cases to add to it!

As for ‘my’ neurologist, who wrote me off a year ago, in an incredibly brief session on one of his afternoons over from Addenbrookes, where he is based, I don’t yet know what he will think when and if he sees the scans. I know he saw the second scans but I heard nothing. In a way, I don’t care, but in another way I do, because so many people could be benefiting from this, but as yet only a few GPs seem willing to refer someone with MS to a microbiologist. Actually quite a lot now do so locally.

The pity is that it has been found both by David and the team at Vanderbilt, where most of the research is going on, that the more deeply entrenched the progressive forms of the disease, the less likely one is to have much improvement, if at all. Therefore the earlier one starts the treatment the better. Luckily I had only been progressive for three years at most.

Sarah :)
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Postby SarahLonglands » Sun Nov 14, 2004 10:05 am

Posted originally: Wed Sep 29, 2004 10:50 am

Today, September 29th, is my first day of taking just one roxithromycin per day, with the aim of being off them within a couple of months, thereafter taking top up doses of doxy/roxy for three weeks at a time, with metronidizole added for five days in the middle, every two or three months, for a period yet to be decided.

This is all new, so I will just have to see how it goes and keep you informed.

Sarah
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Postby SarahLonglands » Sun Nov 14, 2004 10:11 am

Originally posted: Sat Nov 06, 2004 8:00 pm

Now it is November 6th and I have not taken any antibiotics for nearly a week. I will start a short booster dose sometime in December, though, of probably two weeks doxycycline and roxithromycin, with 5 days of metronidizole sandwiched alongside part way through.


My physical improvements continue: plantar reflex in my left foot completely back to normal, and much improved in my right foot. Strength of my right hand back to normal also for much of the day, although it tires quite easily still. For this reason watercolours are still easier than oil painting.

If I kneel down for too long I can feel quite dizzy when I stand up, also if I turn round too quickly.

I have started to use my pilates ball in earnest again because I find it helps this problem. Also it is quite relaxing because you have to concentrate so hard not to fall off the damn thing. I have done yoga for years but this is somehow easier because you have something to lean against.

Fatigue is now only really a problem when taking metronidizole, however I would suggest to everyone to try acetyl l-carnitine. I have recently started it and it certainly works for me. You can find more information about in the section on diet. I don't take such large quantities as Felly, though, because I don't feel the need. I guess the best thing is to experiment until you find your ideal dose. I will add this to my treatment regime later, when I have experimented a bit more on doses.

Sarah

( :wink: a slightly frivolous edit - on Saturday, just after making this update, we both retired to the kitchen to make dinner. David turned round after opening a bottle of wine and called 'interesting cork, catch!' Without thinking I put up my hand and caught it. For years, if anyone threw anything I invariably missed. I thought I was just a bit clumsy. I'm sure he will try it again.)
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Antibiotics

Postby debbie8067 » Tue Nov 16, 2004 7:25 am



Hi Sarah
have been reading your regime with huge interest,as my MS history is quite similar to yours. I.e. I was diagnosed 16 years ago after a weak left arm but my symptoms after that were so sporadic,I carried on being an actress in Musical Theatre and had 2 boys (now 9+10).
Around 2 years ago, my right leg becasme very graduall weaker,and my neuro decided it was secondary porogressive.

I've been on Aimspro (Goat Serum) since Feb of this year and although it's helped a little,I want to try something else as well,specially as the National Hospital has nothing to offer apart from Steroids.

I e-mailed David Wheldon and am going to meet him next weeek!

I'm a bit nervous but have only heard ( thru this website) what a kind man he is.

Thank you for all your info and help and I'll let ytou know how it goes.

Debbie x
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Postby Scaggs » Tue Nov 16, 2004 10:15 am

Hi Debbie

I met up with Dr David Wheldon a few weeks ago for a consultation, and I can honestly say you have absolutely nothing to be nervous about. He is an extremely nice gentleman, very helpful, and is only concerned about getting people better.

Please keep us all posted on how you get on with the antibiotic treatment.

Best wishes
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Postby SarahLonglands » Wed Nov 17, 2004 4:45 am

Hi Debbie,

Here is a short note about David Wheldon, my husband (!) and a really excellent person. You really have no need to be nervous about meeting him, as Scaggs seems already to have said.

Your MS seems to have many similarities to mine in the way it developed and the way you have been treated by the neurologist - heard that somewhere before! I wasn't even offered steroids, though, so he must have thought I was beyond even that. The main difference is that my symptoms were so minor for many years that I didn't even realise what was wrong with me, or maybe chose not to. When my hand completely gave out, though, I obviously had to, because I couldn't paint or do anything. No use to an artist. Nearly perfectly ok now, though.

So many people have told me about goat serum, I guess I would have tried it if David hadn't discovered the work going on at Vanderbilt: I can't imagine it would have had the same dramatic effect as the antibiotics on me, though. For that reason, I wish you the best of luck, both with meeting David and starting the treatment, should you decide so to do.

Take care, and keep us posted!

Sarah :)
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Postby magpie » Wed Nov 17, 2004 7:18 am

Sarah

I hope you don't mind me adding to your post but this is a question that I want to ask you directly.

Having spent 18 months of my life coming to terms with the fact that I have a progressive disease and all the mental torture that entails, I'm interested to know how you view your health and situation now? I know that you have been vilified in a different forum for using the word 'cure' but reading through your thread it certainly seems the case. If someone was to ask you officially if you had a disability what would you answer? Do you view yourself as still suffering from MS?

Kind regards

Magpie
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Postby SarahLonglands » Wed Nov 17, 2004 11:20 am

Magpie,

I don't mind at all, because it is an entirely relevant question. Difficult to answer, though, but here goes. I was started on the treatment without really having time to think about it and certainly not knowing if it was going to work: not really expecting that it would, quite honestly. I knew quite soon afterwards that something was happening, and not just in my bowels! Within just a couple of weeks I was speaking much more clearly: everyone I spoke to on the phone remarked upon that. My mind started to feel clearer as well.

I didn't start posting anywhere for over six months: after my second scan. I was so much better by then that I felt I wanted other people to benefit, but I went at it a bit too enthusiastically, shall we say. Because I felt that I was getting better, I didn't spend much time looking at MS sites, otherwise I might have been a bit more circumspect. The first time I looked at anything, I found a lady saying that she looked upon her MS as a gift from God - enough to put anyone off, I would have thought, never mind a died in the wool atheist.

Now here we are, 16 months later: I have definitely had no adverse events in that time and you have read about my various improvements, both in my MRI scans and physically. I think I must say that I still have a certain amount of disability: I certainly couldn't attempt a 20 mile trek at the moment, but less than a year ago I couldn't walk to the end of the road. The disabilities are due to scarring in the brain: the inflammations will probably just carry on diminishing, but there is a certain amount of scarring, not vast, towards the centre, probably from years back. I have no scarring in my spinal chord, which would prove more problematic, because of the confined space: the brain is large enough for new pathways to be easily found, bit by bit. At the end of the day, I might end up with slightly less stamina in some respects, because these new pathways are going to be just that, not the best ones, which are no longer available. Having said that I made a better attempt at catching something (a cork) only a few days ago than I could have managed in years. David couldn't believe his eyes. So I guess I will carry on this rerouting for quite a few years. Keeping fit and not being overweight I would guess helps in this, whereas mooching around feeling sorry for yourself won't.

Now the big question: "Do you view yourself as still suffering from MS?" :?

I suppose many people will say that I will always have it even if I live the rest of my life without another relapse or adverse event. Sooner or later I will have to fill in an insurance form where I have to answer that question, but leaving such matters aside I will stick my neck out and say "NO," because I don't want to be labelled for life without need.

Should I run for cover now or stand my ground? The latter, I think.

Take care and carry on getting better yourself.

Sarah
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Postby magpie » Fri Nov 19, 2004 2:02 am

I found a lady saying that she looked upon her MS as a gift from God - enough to put anyone off, I would have thought, never mind a died in the wool atheist


Yeah, I've never really understood that way of looking upon MS. I am me and I just so happen to have MS. I certainly wouldn't want someone decribing me as the lady with MS!!

Thank you for the honesty in your reply. You are an inspiration. :D

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Finished first booster dose

Postby SarahLonglands » Wed Dec 15, 2004 12:09 pm

Well, I have just finished my first booster dose of a fortnight and am back on taking no antibiotics for another two months. :)

How I have felt during this time has been completely independent of what I was or was not taking. This time I have just stopped all antibiotics in one go, whereas last time I carried on the roxithromycin in a reduced dose for a while. No worsening of anything by doing this.

I must be honest here and say that sometimes I have a tendency to panic. If I panic my walking goes completely to pot. I must also say that recovery seems to take a strange mountaineering fashion, in that I can reach a plateau and then nothing much seems to happen for a while, whilst acclimatizing, before suddenly, almost overnight, scrambling up to the next plateau. Sometimes, before this scramble, I can almost feel that I am getting worse, which can cause more panic. I should have got used to this by now, but I haven't. It must be the high altitude: how many base camps does Everest have before the last mad dash to the summit? Either four or five. I'm not sure which one I have reached now, but I have definitely arrived at the next level because my walking is suddenly so much better: I can almost glide now again, rather than stomp, so hopefully I am getting closer to number one, not there yet, though.

If this doesn't sound like mixing my metaphors too much, I am going to try proper cycling again this weekend. I really love cycling and have missed it enormously. :(

Sarah
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Postby SarahLonglands » Tue Feb 15, 2005 10:31 am

Time for an up-date, having finished my second booster dose of intermittent antibiotics:

At the moment I am taking booster doses of two weeks at a time, every two months, with two weeks of doxycycline and roxithromycin, adding metronidizole for five days at the end of the course. As ever this five days is nor the most pleasant period of the two months as it makes me feel depressed and tearful and sometimes nauseous, but then it is only five days.

I continue to feel no difference physically when I am taking the antibiotics and when I am not and the improvements are still happening slowly, even after eighteen months. When I first stated, being of a naturally optimistic nature, I thought I would be back completely to my old self by now, ready to walk 20 miles a day in mountainous terrain when on holiday without even feeling tired. Well, as yet I can't, but from being unable to walk to the front gate unaided when at my worst, now is a big improvement. It is possible to feel that you aren't making much headway, but then you suddenly look back a few months and think how well you actually are doing. Patience is not my strong point, but I am learning.

I have a new party trick, which is to stand on my left foot without wobbling. I can't yet do it with my right foot without grabbing on to something after only a couple of seconds, but I keep trying. I have only been able to balance on my left foot for about a month and I must say it rather took me by surprise the first time I did it. My husband will verify that because I just kept on doing it.

The main thing, though, has to be that I have gone for eighteen months now with no negative events and vast improvements, even if I can't go on a twenty mile hike (yet.) Neither have I got very far with the cycling because I keep getting overtaken with nerves and the bike saddle seems much higher than it used to be. :?

Sarah
.
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Postby Arron » Tue Feb 15, 2005 2:25 pm

Sarah, wonderful news... We wish you continued good health and progress.
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby SarahLonglands » Thu Feb 24, 2005 10:32 am

Several things spring to mind about my improvement: When one reaches the stage of progressive disease, inflammation is supposed become a secondary response, and as Robin says in the 'Neuro-protection' thread:

Controlling inflammation and the immune system would control relapses but that the axonal degeneration and disability would progress regardless. Perhaps slowed, but progressing never the less.


This does not seem to accord with my own experience, as someone definitely not in the early stages of MS. At 46 I have probably had the disease since I was 26, when I first started experiencing some slight symptoms. Since starting my regime, I have had no relapses or any other sort of adverse event and the lesions in two subsequent MRIs are both shrinking and disappearing. There are no new lesions. Consequent with this my disability is decreasing. Of this there is no doubt. If my Addenbrooke's based neurologist could bring himself to see me, when he makes his regular outpatients trips over to Bedford, he would find my EDSS ratings vastly improved. Why can he not bring himself to see that just maybe, sometimes it is worth thinking outside the bounds of strict convention? Maybe, as an Addenbrooke's chap, he thinks Campath is far as it goes.

So I am really not sure how incidental inflammation ever becomes, because my disability is certainly not progressing regardless. No, I feel sure that infection is the key.

Sarah :?
Last edited by SarahLonglands on Wed Mar 09, 2005 8:36 am, edited 1 time in total.
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