Always an Anecdote

[SarahLonglands]

I started writing here in:

"Treating for Chlamydia Pneumoniae - a possible cause of MS"
http://www.thisisms.com/ftopicp-1992.html#1992

Then changed to:

"Anecdote's Personal Treatment Regime"
http://www.thisisms.com/ftopic-600-0.html

Then started this new post:

An overdue update, whilst still waiting for my next MRI scan. I am starting a completely new posting because I seem to spend much of my time directing people to the following information, which can now be found in a separate posting in the Antibiotics section:

Firstly my husband David Wheldon's MS pages, which have been much fine tuned over the last few months.

http://www.davidwheldon.co.uk/ms-treatment.html

Then the antimicrobials and adjuncts contained therein:

Antimicrobials
Doxycycline 200mg once daily with plenty of water.
Roxithromycin 150mg twice daily.
These are maintained without a break for at least six months.

Two or three months into the treatment regimen, or when the patient is experiencing few problems with reactions, three-weekly cycles of intermittent oral Metronidazole are added. During the first cycle metronidazole is given only for the first day. If problems with reactions are found, the period of administration is kept short. When metronidazole is well tolerated the period of administration in each cycle is increased to five days.

The dosage of metronidazole is 400mg three times a day. If it is suspected that a patient may have a heavy chlamydial load a smaller daily dose may be given.

The eventual aim is to give all three agents intermittently so that the patient has a respite from antibiotics. This, the final leg of treatment, may entail a 14 day course of doxycycline and roxithromycin, with a five day course of metronidazole in the middle. This course is given once a month. After several months the intervals between the antibiotics may be cautiously extended.

Rifampicin is not suitable for intermittent use, and azithromycin may be given instead.

Adjuncts
The brain has extraordinary powers of repair, but must be provided with the building-blocks by which to do it. This infection is intracellular; the organism interferes with mitochondria, the cells' powerhouses. Many of the symptoms of the disease - particularly the fatigue - may be due to mitochondrial exhaustion. Toxins known as free radicals are released as various synthetic pathways are disrupted. If this continues unchecked for too long irreversible mitochondrial damage may occur. A combined dietary supplementation of antioxidants is strongly recommended. (See Syburra C, Passi S. Oxidative stress in patients with multiple sclerosis. Ukr Biokhim Zh. 1999 May-Jun;71(3):112-5.)

Vitamin C 1G daily
E 800iu daily
Omega 3 fish oil daily
Acetyl L-Carnitine 500mg daily
Alpha Lipoic acid 150mg daily
Ubiquinone (Coenzyme Q10) 200mg daily
Selenium 200 micrograms daily.
N-acetyl cysteine 600mg twice daily
melatonin 1.5mg at night may be considered.

This may seem like polypharmacy, but all these agents are needed. This is because the mitochondrial membrane is the bottle-neck for numerous key cellular reactions, and it is exactly here that chlamydiae hover as they steal the cell's energy and other vital molecules via tiny tubes.

In addition B complex, Magnesium, 300mg and Calcium 500mg supplements in the evening (remote from the time of taking doxycycline) daily.

Vitamin D (high dose - 4000iu) (less may be needed in infections other than MS)

Vitamin B12 injections once weekly for 3 months, then monthly for the duration of continuous treatment. (There is now evidence that oral B12 is satisfactorily absorbed, except in patients with pernicious anaemia. High dose supplementation is recommended.)

Regular Lactobacillus acidophilus, daily, either as a supplement or in capsules. This is to maintain bowel flora in the face of antibiotic treatment. Tablets of Lactobacillus sporogenes spores may be considered. These have the advantage of getting into the small bowel in large numbers.


Then me and another patient:
I have now been on the treatment for one week short of two years, half of that time on intermittent treatment, which consists of two weeks out of every eight taking the antibiotics, with the last five days of each two week course taking metronidizole in addition to the doxycycline and roxithromycin. I am still seeing improvements and have had no relapses at all and certainly no progression.

David has done many slight adjustments to his adjuncts section and both of us have been the guinea pigs for this over the last few months. What I personally find the most obviously helpful in all this is the larger doses of Coenzyme Q10, which helps amazingly any remaining stiffness and slight spasticity in the legs. Magnesium and calcium are also quite good for this but can upset my stomach so I now tend just to take the CQ10, because I don't have any problems with breaking bones or anything like that. Yet. I might have to change my mind after the menopause, I suppose.

The reason I mention both David and myself being guinea pigs is that David himself has been taking the same antibiotics as me, starting three months later. In finding out as much information as he could, in the first instance for my benefit, he realised that he could maybe do with starting the treatment himself, not for anything neurological, but for one of the other things implicated as being caused in many cases by CPn, namely cardio vascular problems. We both experienced the same severe infection just before my MS became progressive and after that time he started to first of all suffer from bad myalgia around the neck and shoulders which got so bad that he could not safely ride a bike. I remember that he looked extremely awkward when doing so and he couldn't turn around in the saddle to see what was coming up behind. Soon after he began to experience big ectopics with concurrent high blood pressure and I especially noticed his heart really pounding away, especially at night, when he was fast asleep.

Because of these things he decided eventually to see what would happen if he tried the same treatment. Now he has a blood pressure of as low as 105/70 depending on the time of day, whereas before 145/95 would be a more usual measurement. At that time he knew nothing about the importance of pulse pressure (see the appropriate section of his updated pages) and if he had, this large difference it would have been even more worrying. His pulse has also become very soft and gentle, rather than pounding away. He also had a sclerosed vein above his wrist where he had a line in during a minor op a few years ago. This shouldn't really have happened, but showed that his blood was clotting too quickly. It has now completely reversed.

Another thing observed in the treatment was severe muscle fasciculations, specially one which crept up his torso then went down his back, then returned. It looked almost like something under his skin. There were also more minor ones in various parts of the body at various times.

He experienced the same things as me with metronidizole, but to a slightly lesser extent. Even he, though, never took it for more than a week at a time.

Now he has stopped the abx completely, but may take the odd booster dose in the future. The cardiovascular problems were what was worrying him the most, but they have now completely righted themselves. He has lost a lot of soft tissue swelling and at the same time lost a lot of weight, which is no bad thing. He can now turn around to see what is coming up behind him on a bike and looks easy in doing so.

Lots of men in their late forties, early fifties, for no apparent reason, suddenly die from heart failure. David might well have been one of those, but I guess now he will live to be a great age, barring accidents, of course.

More about me after I have my next MRI scan!

Sarah

[VladFT]

Hi Sarah,
I was waiting for this update Great to hear that you keep improving.
This all is very very interesting.

Vlad

[Arron]

Excellent, informative post. As always, anyone looking to follow an alternative treatment regimine should only do so under the consult of their doctor, but Sarah has at least made the information gathering step incredibly easy! Many thanks on behalf of the community.

[jaycee]

Sarah

Exactly what reactions are typical to the antibiotics you take? By the way, my husband was just diagnosed with a peptic ulcer and may end up taking metronidazole for it.

[SarahLonglands]

Vlad and Arron - Thankyou! Vlad, I'll find some more info for you over the next day or so.

Jaycee, You might care to look up the following sites to find out about possible side effects. Bear in mind that 'possible' means just that.

http://www.gicare.com/pated/doxycycline.htm

http://www.medsafe.govt.nz/Profs/Datash ... cintab.htm

http://www.endowsec.com/pated/metronidazole.htm

The second is for roxithromycin, or Rulid, but called something different in New Zealand, it would appear. I picked these three sites, though, because they seemed the best laid out.

Sarah

[gibbledygook]

I think the metronidazole also has side-effects which probably aren't mentioned in the above links since it seems to relate to some of us pwms. I have flare-ups in symptoms during or after pulses of metronidazole. I believe that others also feel that their symptoms are exacerbated by the metronidazole but that this worsening is temporary.

For me the latest 12 day pulse of flagyl coincided with a dramatic worsening in symptoms, some of which improved immediately after stopping the flagyl and some of which are still pretty bad even though I am now thirteen days off the flagyl.

For me the other antibiotics don't seem to have such dramatic side-effects but can cause me nausea and dizziness.

[Daunted]

Sarah,

Great post.

For those of us taking lots of Flagyl and then feeling the ill effects, it's probably best to concentrate on anti-endotoxin measures such as chlorella, charcoal, Questran, Procardia. It seems to slowly lift- very slowly, though.

[SarahLonglands]

You know, I sometimes used to think that life would have been much more pleasant if I had never started on the metronidizole and had just carried on with the doxy/roxy combo, maybe forever, but now, two years on, with the only side effect of the metronidizole/flagyl being the general tiredness and weepy feeling common to many people and nothing to do with its cidal effects, I think it was worth it.

There were many times over the last two years when I have not felt this way though: metro/flagyl isn't a pleasant thing to take for many, perhaps the majority of people, but surely it is better than the alternative. I think so, anyway.

Nobody here knows what I was like before I started. I don't even fully remember a lot of it myself. Life was becoming blurred, in soft focus, and very rapidly too. David says that I was becoming a different person, but now, mentally at least, I am totally back to like I was before. So please, Alex and others, stick with it. Don't just give up and move onto something else just because it is more difficult than you thought. Sometimes you might well feel that you are getting worse, but remember that people with truly progressive disease just get worse slowly and smoothly: no sudden bumps in either direction.

And remember Daunted's dictum about the anti-endotoxin measures. Oh, and stick with just five days at a time of metronidizole!

Sarah

[Katman]

How uplifting it was to see Sarah's post at a time when I (and it looks like many others) really needed it. I have been floating all week without much interest in anything - very unusual for me- all week and along came Sarah carrying the "Down with MS" banner. Daunted also described his symptoms which are like a mirror for my own mental and physical state of affairs. I cut my Flagyl to 375mg 3xd, same five days, thereby cutting my mental vacancy by some unknown percant, but still paid some price, which is ok and expected.

I loved Sarah's remark and took it straight to heart that she sometimes wished she had gone on with her happy trail of fogginess. Nothing much to bother about or bother with. This is a "site to behold" for dwellers of the fog.

I do have a question. How important is Carnitine (sp)? My body does not like it and the pills are about brick size, even cut into 5 pieces. Perhaps I could smash it into dust. I can be very violent if I need. I did begin charcoal and have no problem with that. And cystein? I don't rememberr that but am happy to add it.

[SarahLonglands]

Ha, just caught me before I go for dinner. Thankyou for your remarks!

Basically, if you don't get on with carnitine, don't worry about it: I only started taking it comparatively recently. If you can stomach the n acetyl-cysteine, though, this is supposed to be very beneficial for people with MS, but again I only started it even more recently, in my current guise as a guinea pig. I find 200mg or more of Co Q10 to be the most beneficial of that little group, but you need to take it in that sort of quantity to feel the benefit. Now Foods do what looks like a massive one, but it is chewable and tastes of orange. I import it from iHerb.com. They might look like a big round brick but they taste better.

Got to go, I can smell a nice aroma of grilled chicken.

Sarah

[Notdoneyet]

How dare you all speak so unkindly about my good friend Flagyl (metronidazole). (':lol:') In my nine months on the Wheldon regime using rifampin and doxycycline, I've had a dozen or so courses of flagyl and have experienced definite sharpening of all my motor functions about the second day after I start a new pulse. This lasts for a couple of weeks or until about three days before I start a new pulse. I am now taking metro (3X500mg per day) for one week followed by two weeks off. This schedule gives me more days of feeling coordinated and has been the best overall for my walking. If it feels good, do it. If it doesn't, don't. That would be my suggestion.

One other thing. I think if I was just sitting back waiting to get better, I'd not have seen so much progress. Besides being on the golf course every day, I've been doing workouts at the gym and walking regularly on my treadmill. If I slow down on any of these three things for a while, I'm feeling pretty punk and my walking suffers.

[LifeontheIce]

Thank you, Sarah, for the update. I am loking forward to do intermittent antibiotics. Still have to finish another six months.

[SarahLonglands]

LifeontheIce - six months will pass in the twinkling of an eye! Keep off the torpedoes, though!

Colin - I couldn't agree with you more! Well, maybe calling metronidizole a good friend is pushing it a bit, but it is a true nonetheless. Where would I now be without it and its other buddies? Not here, happily typing away, that's for certain. I do think you Canadians must be built of sterner stuff, though.

As for the sitting back, waiting to get better, not guilty, m'lud. I have put my space walker right next to the door out of my studio: if I have been sitting painting for longer than an hour, I do five minutes on that. If I don't, I feel it!

Sarah

[Notdoneyet]

Dear Sarah,

Sterner stuff than you Brits? I think not. I haven't mentioned much of this because I was afraid I'd get branded a kook, but in Canada there is provision for legal medical use of marijuana and I've been medicating fairly regularly for years. I've always found it useful for calming my body down. That could explain a lack of stomach problems with metronidazole, and with the regime on the whole. I do get weepy, though, but I'm happy to blame that on metronidazole and not on my rather sentimental nature.

Thanks to you and David for everything,
(I know Canadians are notoriously polite, but I can't say that enough, he says, wiping away a tear.)

Colin

[SarahLonglands]

Either Monday or yesterday was exactly two years since starting the antibiotic treatment. These last two years have been very strange ones, to say the least. Not being someone generally inclined to post on forums or either look at them come to that, six months into the treatment, with an amazingly improved MRI scan (for someone with SPMS) under my belt, I thought that I ought to do something to spread the word about something which had given me such improvements against all odds, because having looked into things in the previous few months, I knew what difficulties the originators of the research in this field, namely Ram Sriram and Charles Stratton of Vanderbilt University, Tennessee, were having being taken seriously. Well, I chose the wrong site to start with, being a novice in such matters, but eventually found ThisisMS in June of last year.

Now, I know many people who are taking antibiotic treatment, based on the theory that MS actually has an infective cause and that CPn is the culprit. Not by any means all of these post anywhere, which is their choice. I also know a few who started out but then got disheartened because it isn't the quick fix they had hoped, and so have stopped and gone on to something else. Again, this is their choice. They always have the choice to revert to antibiotics at some point.

What I would like to reiterate here, though, is the fact that antibiotic treatment is not a quick fix because CPn is so difficult to completely expunge from your system, and this very expunging can lead to some very uncomfortable episodes en route. For instance, I can now say that I have had no relapse or progression of the disease since starting treatment, whereas before this, once I had become truly SPMS, I was progressing at an alarming rate. This does not happen to everyone because I know of people who are a fair bit older than me yet are not at the moment so badly affected as I was. This partly depends, amongst other things, on where in the CNS the disease strikes and how recently one has had a reinfection with the organism.

David is very shortly going to be adding a piece to his web-pages, explaining the difference between a true relapse and a pseudo relapse, discussed with people who should know, which many people have probably experienced on the CPn regime, so I will leave it to him, then cut and paste it when he has done it. It occurred to me thinking back, that if I had not been married to David, who could go through such things as and when they happened, when I experienced the awful pain in my shoulders and down my right arm, at just short of six months, which made my right arm temporarily useless again for maybe a couple of weeks, I might have put this down to a relapse. It can't have been because apart from anything else, no disease activity showed up on the two subsequent scans.

So now I can get on with doing new work for an exhibition in France in something over a year's time, violin dealing and running my small company without the fear that I am not going to be able to carry on. I can even race around the park on my bike: I can't manage running yet!

Sarah

As a change from a picture, here is a poem written by David and published in 1998

A constant dream of those
who can no longer walk


A constant dream
of those who can no longer walk
is the running over level sands.
In the close and confined air
the dream recurs—
the running over level sands,
no hunger for the air
which comes like nature to the breath,
no flight upon a freedom
for the spirit freely is,
no sight taken for a course
for all that being takes unto itself
is a running over level sands.



From 'The Present Perennial' ~ Sept. 1998 ~ © David Wheldon