LifeontheIce wrote:Two months after stopping antibiotics it ocurred to me that I was not as dumb as before taking them
MacKintosh wrote:We're all in this together
LifeontheIce wrote:It proves to me you have cpn.
For now, I dont see any definitive improvements over before the flagyl pulse.
Katman wrote:I, too, did not notice anything the first few times on Flagyl. but then I did not notice improvement for 8 months
Katman wrote:My doctor .... He also said he expects coronary heart disease to be implicated any day
Katman wrote:You DO have a wonderful, openminded doctor
My doctor said he was delighted that we are doing this and that it is WORKING. He also said he expects coronary heart disease to be implicated any day. I said look at CPn Help.org.
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 170/110 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.
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