I started writing here in:
"Treating for Chlamydia Pneumoniae - a possible cause of MS"
Then changed to:
"Anecdote's Personal Treatment Regime"
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.
Then the antimicrobials and adjuncts contained therein:
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.
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!