My lazy update for anyone whos interested

[CureOrBust]

Ok,

I have now been on doxy and roxi since about the 10th Sep this year.

I cannot honestly say I have had any reactions to the two antibiotics, so I decided to start the flagyl a little early (ie after only 3-4 weeks). Ok, so im impatient. It gets worse...

I also thought, lets try for the 5 day flagyl (metronidazole) pulse, and monitor my body temp and how i felt VERY closely.

So, I went for four days of flagy, the first time. I started to have what felt like a relapse, so i stopped the flagyl (got to 4 days). I didnt see ANY increase in body temp (always in the 36.2 to 36.7 orally).

I dont know if it was a herx, but if it was a relapse, it certainly stopped pretty quickly (2-3 days).

I started the flagyl on sat 1 oct, and stopped on 4 oct 2005. I cant say I have noticed any improvements, above what I was feeling before, now after the flagyl.

However, I certainly cant wait for my next flagyl pulse (I promise, I'll wait 3 weeks....)

[SarahLonglands]

Damn right you'll wait three weeks! I obviously can't say for certain, but it was a jolly quick relapse: I guess it was what you were waiting for!

I did four days first time round, not for any 'herx' reactions, but it just made me so depressed and tearful. I'm really quite a wimp, you see. I have started using tinidazole instead in my booster doses because it doesn't have this effect at all.

Sarah

[MacKintosh]

IF we're interested?!!! We're all in this together and of COURSE we're interested!

I'm so impressed. You're doing really well. I keep saying this is simply an investment in the rest of our lives. We can be tough if it means we get an MS-free (okay, relatively free) future!!!

Keep writing! MacKintosh

[LifeontheIce]

CureO, I did exactly the same thing as you did in June, 2004. I added 5 days of Flagyl to doxy and roxi after three weeks. All kinds of minor paresthesias came back while I took metronidazole, and I quit all the antibiotics for three months. I went back to Lipitor and was fine after several days. Two months after stopping antibiotics it ocurred to me that I was not as dumb as before taking them.

Cureoella, you are on the right track. It proves to me you have cpn.
B.

[CureOrBust]

Two months after stopping antibiotics it ocurred to me that I was not as dumb as before taking them

in two months i hope to have gone through 2 more flagyl pulses! wait a sec, i thought you said numb...

We're all in this together

Without others posts, I certainly would be looking at this option and its effects in a different manner.

It proves to me you have cpn.

I'm a little sceptical still, but i am definitely not giving up on this. I still see it as possible that it was just a simple relapse. If it happens again on the second pulse, there will be no way I could see it as anything else other than an infection. Although, even if I get no further reactions, I will still go through a number of flagyl pulses.

For now, I dont see any definitive improvements over before the flagyl pulse.

[SarahLonglands]

For now, I dont see any definitive improvements over before the flagyl pulse.

No, I didn't first time round!

Sarah

[Katman]

I forgot two things earlier- I told my regular doctor about Sarah's MRI and the disappearing lesions and that she was now riding a bike. He was really speechless. He said that has never happened in MS. I also said I guessed there were between 20 and 40 of us worldwide who were getting better on abx and supplements. I pulled that figure out of my head. Any thoughts anyone?

Rica

[Jaded]

Hi Rica

No idea on numbers - I expect Sarah may have a better feel for it as most people must have contacted her or David at some stage....

Count me in though. Been on the abx since August.

J.

[SarahLonglands]

Good evening to Jaded and the Goat Champ!

If you take all the other various diseases which are implicated by CPn, I would say far more. You have to take Vanderbilt into account and they have probably seen far more either personally or through Mike Powell in Sacramento. Certainly he is so busy he isn't taking on any new patients at present.

David works for the NHS in the morning, then sees private patients and deals with other matters in the afternoon. He doesn't get away until gone 5 o'clock most days, then does more work in the evening.

Jaded, I hope you are doing OK! I was meaning to write but keep getting overwhelmed with other things. Write to me and I will have my memory jolted!

Sarah

[Katman]

Jaded

I hope your drugs come soon. Delighted to have you in our company. You are on the watch list.

CureOrBust

I, too, did not notice anything the first few times on Flagyl. but then I did not notice improvement for 8 months. Thinking back, I was spacey and slept a lot. This was last spring and I did not know of this site until July! Wish I had. 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.

Rica

[CureOrBust]

I, too, did not notice anything the first few times on Flagyl. but then I did not notice improvement for 8 months

Dont get me wrong, I am i improving every day, its just i was improving before the antibiotics (on LDN & Statins). I guess there is also only SO fast that myelin can replace scar tissue anyway.

My doctor .... He also said he expects coronary heart disease to be implicated any day

When I went to discuss abx with my doctor, he said "they are blaming EVERYTHING on CPn, even heart disease!"

You DO have a wonderful, openminded doctor

WONDERFUL yes, without a doubt, open minded... ahhh... He has been great with prescribing things that are not "normal" for MS. But he enjoys making jokes about the strange things i have tried (at my expense...). Yeah, he is open minded, but even more sceptical than me. I think he has an understanding how serious MS can be, and how little damage the medication he prescribes could do (while monitored).

Did I mention how much I appreciate my doctor?

[SarahLonglands]

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.

And look at this posting of mine aswell!

http://thisisms.com/modules.php?name=Fo ... pic&t=1345

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.

In this household there are two people who have probably been rescued

Sarah

[kitkat2]

A bit OT, but Sarah, you wrote about ectopics. If you're talking about the isolated "jumping" heart beats, I have had those for years. I think caffiene makes it more pronounced, so I avoid it.

My heart rate has been termed "irregular" at times by various docs, but not life threatening. Could that indicate an enlarged heart?
Just curious. I have read something about an enlarged heart being related to chronic infection(??)

Kitkat2

[SarahLonglands]

KitKat,

I have put the correct link there now, and copied the whole relevant section. Many people have an irregular heart beat at certain times, but this was more than that. I don't know if the heart was enlarged, because David, as a physician, does not do the obvious thing and get something checked by the relevant specialist rather than just worry! What I do know is that now his pulse is as soft and as difficult to find as that of a child and his whole body doesn't shake with his heavy heartbeat at night when he is asleep. His blood pressure has come down amazingly and he has the pulse pressure of a twenty year old.

I can seem a bit OT sometimes, but when you think where I would be now if I had just gone along with the neurologist's prognosis, it isn't really surprising.

Sarah

[kitkat2]

My apologies, Sarah, a writer I am NOT.[lol] I was meaning to preface that way to indicate that it was indeed, I , who was off topic[OT]

Anyhow, without OT'ers, I wouldn't even know about this great website!
Kitkat2