WHere is the best info

[mrhodes40]

HI! It's me Marie. I have another question. I have been reading this forum until I'm bleary -eyed the last few days and have a tablet full of notes to compile into something coherent that I can present to the doc who treats MS with minocycline. What fabulous information from everyone who generously donates their time. Thanks!

I find I am confused as to the life cycle of the CPn and the cryptic form etc. Many of you seem like microbiologists yourseves. Where would you refer me to get up to speed?

I am encouraged by the posts that are detailing some concrete progress. I find the flagyl posts and the emergence of new symptoms or worsening of symptoms scary.

I can't help but wonder if you can push the system too far. ie the nervous sytem is fragile in the CPn client (of course; demyelinated with local exhaustion on a cellular level). We also know that inflammation causes stimulation of remyelination in otherwise quiescent areas. Perhaps using flagyl without limit is too challenging to the brain which after all has just recieved the troops to clean up with active cytokines etc, and oxidative damage secondary to the fight occurs along with injury to nearby cells. Your brain wants to do some repairs, and it has just been triggered to do so. If you give it time... remyelination takes 10-28 days in rats after EAE... then the job could be done, without additional exhaustion of local resources, for example you could give the brain a chance to recruit a progenitor cell to the area and repair, but if the fight is ongoing the new cell will be overwhelmed and hit with the toxic oxidative environment which is part of the way we clean up. Thus, waiting between pulses is not only comfortable but also physiologically kind. You'd know when your body had done the local repair by waning of symptoms. This is what I'm thinking. Any comments? Errors in my thought processes?

Inquiring minds want to know. It sounds like Sarah, you waited a long time between pulses. It sounds like Daunted...should be Undaunted ...is using it very often. Daunted, I am most anxious for you to recover from the Big Pulse. Please post as soon as you feel better !

Recognizing this is new and not too many have done it, and it is an empirical treatmtent primarily; are there any people who had a worsening that did not clear up that you are aware of? Perhaps that person also had pulses too close? Honestly if you have FM or CFS there is no damaged brain to be careful and kind to, so constant flagyl is likely OK. Case in point you can do significant alteration of muscle tissue without losing function, not true of the brain. It's fragile. We are special over here.
IT seems the main inclination with Flagyl is to get it over with by doing as much as you can take psychologically. I just wonder if that's kind of like going to the gym and claiming no pain no gain and ignoring a strain.....that later turns into a big problem..
Marie

[SarahLonglands]

Hello Marie,

If you want to know the best place to go for everything in one place, I should concentrate on this:

http://www.davidwheldon.co.uk/ms-treatment.html ........and the appended pdfs.

David uses doxycycline rather than minocycline for the reason that the side effects are fewer so you can stay on it for longer without problems. There is some evidence that minocycline gets into the brain in slightly larger numbers, but if doxycycline is used synergically with a macrolide the effectiveness is quadrupled. Stratton at Vanderbilt is now veering more towards using doxycycline and (Un)Daunted has switched to it after discussing it with him.

As for the dosing of metronidizole/flagyl, I have never taken it for more than five days, with at least three weeks between pulses. As Daunted says somewhere, his Doctor is primarily treating FM and CFS, so they can probably take it for longer. I must say, apart from after my third pulse, I never had such bad reactions as some people are recording. What I generally got and still do although I have been off full-time dosing for nearly a year now, is the tiredness and weepiness which is just common to the drug whatever you are taking it for. My GP felt exactly the same when she took it for whatever reason. You can cope with this for five days, or a few days over. What I experienced after the third pulse was something else, though. I lost all the improvements in my right arm and was in such pain I just sat in the kitchen, against the aga and cried with the pain. I think I left it more than three weeks before starting the next lot, but the reactions had really faded away this time. I was back to painting just a few days after finishing the pulse, anyway.

Another thing to think about is that different people will have different levels of the bacteria: in many cases this will be due to age, but not entirely. I think I had much lower levels than many people: it just got me in the wrong place.

.....................claiming no pain no gain and ignoring a strain.....that later turns into a big problem..

No, I think it might initially feel like this, but that eventually one will end up better than before. I just think that it is better to take things easily and not put yourself through extra agony without need. After all, the biggest problem, surely, is the MS.

Sarah

[Jimk]

Marie-
I've been on the Wheldon protocal since Dec. 04 for CFS/FMS. Actually, I had 3 months of tetracycline prior to starting the doxy/zith combo. Recently I started adding amoxicillan which Stratton uses in his protocal, David Wheldon said that Stratton likes this to "clean up the elementary bodies" of the Cpn. I can give you my understanding of the life phase of Cpn distilled from reading Stratton's patent materials and David's site (as Sarah says, go right to his site, do not pass Go...) but I'll say a bit about my own experience on the protocal first.

Each time I have added a layer of the protocal I have had a big herx reaction: huge fatigue, massive muscular and joint inflammation, pea-soup brain fog, irritability, depression, discoordination, etc. Remember that my diagnosis is CFS/FMS rather than MS, but clearly I have had neurolocal symptoms, at least in the die-off. This is all probably indicative of having a very high load of bacteria in particular endothelial layers (muscular, joint, intestinal at least). The first course of tetracycline floored me for two weeks. Switching to doxy was easier, but still had some added herx. Adding zith three weeks later created another herx period, again not as bad as the first one. I was eager to start the flagyl after a month of the full doxy/zith. I could tolerate one dose of the flagyl, but actually felt a return of energy after it. I tried one dose of flagyl once a week for a while, initially with better energy, then as I tried to add days to to this, I got sensitive and intolerant of the flagyl (nausea, fatigue, nausea). I recently switched to Tinidazole which has much less side effect and I can tolerate a full dose (500mg twice a day) for about 4 to 5 days now. I recently added amoxicillan to this, and was shocked at having anotther herx of severe muscular and joint inflammation. Currently doing one dose a day and the reaction is less and less. I'm going to take my time at adding the second dose and the probenicid. David doesn't think it's necessary, but my own experience with the amoxi getting at some bacterial layer the others did not suggests it may be useful for some.

The simple condensation of Cpn lifecycle:
There is an intercellular (ie in free living on tissues) form in which the organism replicates. This is the life phase affected by abx like doxy, zith and amoxy which interfere with replication processes. There is some evidense that in the right doses there is also some actual kill (bacteriacidal) effect in addition to the major inhibition of replication.

When the replicating phase is threatened (a stringent response) it moves into cells like monocytes and macrophages) where it is in a cryptic, or nonreplicating phase. As it's metabolism is anaerobic, it is affected by agents like flagyl and tinidazole, but since it is nonreplicating, it is not effected by standard abx.

The elementary body phase is another intracellular phase of Cpn. From the Stratton patent:
"Antichlamydial therapy for chronic Chlamydia infections must be continued until any intracellular EBs or other intracellular cryptic forms have been activated and extracellular EBs have infected host cells. This reactivation/reinfection by chlamydial EBs clearly is undesirable as it
prolongs the therapy of chlamydial infections, as well as increases the opportunity for antimicrobial resistance to occur.
Physiochemical agents have been identified that can inactivate chlamydial EBs in their respective hosts by reducing disulfide bonds which maintain the integrity of the outer membrane proteins of the EBs... One such class of disulfide reducing agents are thiol-disulfide exchange agents."

Stratton finds that by addressing these three phases you are most likely to killl the Cpn completely and prevent and reservoir for reinfection. In fact, he says that once immune cells are cleared of Cpn, they actually are more resistant to Cpn infection.

[SarahLonglands]

Stratton finds that by addressing these three phases you are most likely to killl the Cpn completely and prevent and reservoir for reinfection. In fact, he says that once immune cells are cleared of Cpn, they actually are more resistant to Cpn infection.

Yes, I forgot to mention this. In a way you are vaccinating yourself against further infection, a very important point, so thanks Jim.

It is strange how some people can tolerate metro-flagyl so easily. A very near neighbour, being teated for CFS claims to have had no ill effects at all, yet he is clearly vastly better, striding up the road like an army general. A few years ago he lost his job because of the illness.

Sarah

[mrhodes40]

Hi Sarah and Jim!
Thank you very much. I read the page linked and am now up to speed on the lifecycle. I do appreciate this. It makes it easier to be clear on hwat's up with the treatment. I appreciate your kindness to answer a person you don't even know or anything.Sometimes the world feels a cold place when you have MS (like when the pharmaceutical companies want your money in volume), but people like you remind me the world has lots of nice people too! Thanks for being nice people! It does engender hope!

Clearly any symptoms one will have from flagyl is better than MS. no problem there. My concern was that in reading so many posts, many of them about "flagyl flares" including often new or troublesome neuro symptoms, it seemed that it might be too aggressive use of the flagyl ie too soon or too long, that caused the symptoms. The body does need to do repair.

Here's what I know: the cryptic form is vulnerable to flagyl, so when a pulse is given it kills the bug. the cleanup opertion carried out by the immune system results in metabolic and endotoxins which become systemic and cause the wierd unreal symptom and flu like stuff.

but here I'm making a guess based on my understanding of physiology: locally where the cell died and the immune system is actively taking it apart which results in this endotoxin release, you have inflammation (cytokines, macrophages) which is how the body gets immune cells in that location. This is ordinary cleanup.

Inflammation results in stimulation of remyelination ( http://brain.oxfordjournals.org/cgi/con ... /128/3/528 ) . My theory was if the pulses are too close, you hamper the repair process as the ongoing battle results in peroxynitrates and other toxic elements being released to perfom the cleanup and hence the newly stimulated remyelination and progenitor cells would be hampered by the presence of the peroxynitrates and other toxic elements of the cleanup operation. It's a theory that might indicate why a person needs to have small pulses early on when the load is great and why it is not a time to tough it out but to respect the repair and cellular processes going on and lay off if you feel punky.

If you say of course this is why David recommends small short pulses at first, I'll say good. I figured it out. I like to know things like this. It keeps me honest...as in, I will not overdo the flagyl thinking to tough it out so I can get done faster because understanding the physiology I will 'get' that it won't help to overdo it. That would be me. If there's someone in the gym overdoing it, that would be me. I'm like that, and I'm always surprised when I get hurt too. Doh! The physio rolls her eyes when she sees me. I actively work to offset this annoying part of my personality.

I want to do this right. I feel anxious and excited and hopeful and afraid to hope. I also feel a compelling need to understand it as did Dr WHeldon , whose grasp of the situation literally allowed him to believe in it for his beloved even in the face of new symptoms. I want to be there mentally so I can finally have a win in this battle. I'm tired of losing, and I see that part of this will be mental. I have to be ready to face down the symptoms both psychologically and intelligently and to be able to face down the detractors who want me to quit when it looks bad. Thank you to everyone of you who post our experiences here. Thank you to the site admin who donate their time and energy to create this incredible forum.
Blessings
marie

[SarahLonglands]

If you say of course this is why David recommends small short pulses at first, I'll say good. I figured it out. I like to know things like this. It keeps me honest...as in, I will not overdo the flagyl thinking to tough it out so I can get done faster because understanding the physiology I will 'get' that it won't help to overdo it. That would be me.

Yes, that would be me too, so lucky I have David to keep me in check! I have since seen other people overdo it and it doesn't work. It doesn't make you worse, though, in the long run.

You are correct in saying part of this will be mental, but I think you certainly have the right attitude, so good luck with the journey. As well as emailing David, you can always PM me if you feel particularly down about anything. You will win in the end.

Sarah, who is:

[Jimk]

Marie-
My experience is that there is a certain self-limiting thing with both the abx and the flagyl/tini usage: having tried to overdo it to "speed things up" I just got so sick from the herx that I was forced to stop. Some of us may need to be hit in the head with a bat to have some sense, but herx can be a big bat!

I agree with David Wheldon, Stratton, and everyone who's fighting Cpn to go slow especially at the beginning. This stuff is highly toxic! And our immune response to it can be toxic as well, when we finally get one! After being on the full protocal for 9-10 months, including about 5 full rounds of flagyl/tini pulse, I was shocked to see how much inflammatory herx I had just adding one 500mg amoxi to the regime. So, once again, I had to slow down the step-up of the protocal and give the abx time to winnow down the total abx load (takes 2-3 weeks to get back to baseline for me after making any increase in regime).

Take your time, but get started!
Jim

[mrhodes40]

Thank you guys. Wow, I actually had a lump in my throat when reading your replies. I forgot what hope feels like. How can I thank you for that?
I am ready to be as brave as I have to be. Sarah thank you for the kind offer to recieve pm.

Here's a question for the site logistics. When shall I make an entry in Regimes? As soon as I start abx?
Thank you! Bless you all!
Marie

[Daunted]

but here I'm making a guess based on my understanding of physiology: locally where the cell died and the immune system is actively taking it apart which results in this endotoxin release, you have inflammation (cytokines, macrophages) which is how the body gets immune cells in that location. This is ordinary cleanup.

Inflammation results in stimulation of remyelination ( http://brain.oxfordjournals.org/cgi/con ... /128/3/528 ) . My theory was if the pulses are too close, you hamper the repair process as the ongoing battle results in peroxynitrates and other toxic elements being released to perfom the cleanup and hence the newly stimulated remyelination and progenitor cells would be hampered by the presence of the peroxynitrates and other toxic elements of the cleanup operation. It's a theory that might indicate why a person needs to have small pulses early on when the load is great and why it is not a time to tough it out but to respect the repair and cellular processes going on and lay off if you feel punky.

Since Charles Stratton is recommending Flagyl every single day it would be interesting to hear his take on all of this. For me personally it is not the length of the pulse (I did 10 day pulses relatively early in treatment), it was the not waiting 21 days between pulses; e.g., doing a 10 day pulse, and then just taking 2 or 3 days off before starting a new pulse. I am going to strictly adhere to 21 days between pulses from now on.

Some patients with CFS/FMS etc are doing every-other-week with great success but I found out the hard way that this doesn't work very well for me.

[mrhodes40]

Quote, Daunted"Since stratton is doing it every single day it would be interesting to hear his take on this"end

How do you get the little quotes on there the right way?

this would be interesting to know his thought. He must have a biological reason for hitting it without rest, I bet to do with the bug. I'm glad you have a plan to use for the pulses. I personally will adhere to the 21 day off cycle based on your sharing, and the knowledge it takes 10-28 days for remyelination to complete. Thank you so much.

You are probably remyelinating even now you lucky person! All that stimulation to the area is bound to have gotten it going! Sarah said everyone gets over the pulse time and is better. I can't wait to hear what you can do now!

You know if you read the link I put in there it is a brilliant reason to be annoyed with the immunosuppression model of treatment. They've been turning off our remyelination for years. Now we have a way to turn it back on and kill bugs all at once. Wonderful.

Does physical activity cause an overdo also? Like if you are pulsing and you go on a bike tour (HAH! didn't know I was a commediene did you?) will you cause another kind of overdemand? I bet it will. Do people who do well with this take hot baths and nap? Or will moving and doing make it better? inquiring minds want to know.
Blessings to Daunted!
I look forward to your next advancement in function
Marie

[SarahLonglands]

Hello Marie,

If you want to make a quote, cut and paste what you want it to be, select it, then just click the quote button above the reply window! You don't have to bother with html that way.

Interesting point about Stratton: when I first started posting nobody could get through to him, apart from fellow docs like my husband, but now he seems to be making himself more accessible, sometimes.

He is also somewhat refining his regime for some people: not always recommending flagyl every single day, sometimes prescribing doxycycline in place of minocycline and not necessarily prescribing amoxicillin: just mino/doxy and azithromycin, then flagyl, of course.

You know if you read the link I put in there it is a brilliant reason to be annoyed with the immunosuppression model of treatment..........

This is also a reason for me to be annoyed with 'my own neuro': these people are Cambridge based and so is he. Still, his expertise is in epilepsy, so perhaps I should forgive him.

Does physical activity cause an overdo also? Like if you are pulsing and you go on a bike tour (HAH! didn't know I was a comedienne did you?)

You tell me: I think I knew deep down inside that I had MS, but I thought it so unfair that between what were quite minor relapses, I just forgot all about it, until it eventually became progressive and a couple of years later, very aggressively so. Up until 2001 I was perfectly able to go on a bike tour, and did. Latterly I was getting more shaky when I got off the bike, but after a rest I would get back on and be off again.

Now, I think exercise in moderation is absolutely essential. Not sure yet about hot baths: I have never liked them, and much prefer a quick shower. As for napping, 15 minutes after lunch does you the world of good.

Sarah