This Is MS Multiple Sclerosis Knowledge & Support Community

Jim - I know we're hijacking the thread a bit, sorry. I'm going to try INH when I hit the one year mark, just to keep working at the miserable beasties from every angle. I may also do a change-up to roxy, but now I will be religious about doing Wheldon's protocol a minimum of a year. After all, I have skeptics to convert, so I have to be really strict about what I do. It's just been amazing to me not to go through all the quirky stuff everyone else seems to have to deal with. Almost like it's not fair to those who deal with far worse...

Hello folks,

Is INH compatible w/ the abx?

Roy

natgas wrote:Is INH compatible w/ the abx?

from these links it almost seems a requirement.

CPn Help/?q=flagylpulsing
CPn Help/?q=clearing_immune_cells

Roy and Mac,

Going back to the previous page, not talking about INH, this must be the best way. When I first started posting and encouraging people to start the treatment I was horrified by some of the reactions that people were experiencing. The main aim with MS is for the disease not to progress any further. This means different things for different people at various stages. Someone like Mac in the very early stages of the disease is not going to experience much. If someone like Roy posted that they had suddenly jumped out of their wheelchair and walked five miles, I would say "Oh, yeh, pull the other one please." If miracles do happen, they happen quietly.

Sarah

Hello folks,

Thanks for the links, CB. It seems to be the next logical step. I have an appt. w/ my local nero on the 9th and a appt. w/ Ram on the 20th, I'll see about getting this added to the mix.

Hello Sarah, Mac, Jim things seem to be improving a bit, more mental than phyical but all in time I guess.

Roy

Hello folks,

Hope everyone is doing well!

On day 17/21 of the third pulse and things are getting better mentally but seem to be going down hill physically, losing more in motor skills. Have an appt. W/ Dr. Sriram on Monday and we'll see what he thinks of the progression or the lack thereof.

It seems that there has been no effect of the flagyl after the first pulse, does this sound correct?

Going to mention to Ram about adding INH to the mix and see what his response is.

Roy

Roy - Am approaching flagyl pulse number four myself and I seem to be 'backsliding' somewhat, too. I think it's simply the nature of the beast; I've noticed a lot of people seem to have wonky episodes around this time, after reading the many posts here and on CPn Help.org . I know abx is helping, since the brain fog lifted fairly well right away and the rash of symptoms I was having subsided quickly with the abx, so I am just going on the theory 'you gotta have faith'. David Wheldon says it will not necessarily be easy, though my reactions have been pretty much nil. Sarah reminds us it is not a steady progression of recovery, but more of a stair-step like curve; a sudden recovery of something lost, a new twitch (or worse) here or there, stamina restored, then something else plateaus. I'm trying to put it out of my mind, for the most part. I signed on for a year, minimum, and by God, that's what I'm going to do. Just know you're not the only, lonely one. I have no register on the EDSS scale, yet there are days I wonder if this or that isn't going 'wronger' than before. When I reflect on how MANY things were wrong before I started this, though, I realize I've had decent progress for only four and a half months' investment in myself and my future. We'll get there...

Roy, have patience. I can testify to the fact that you are better on the basis what you already wrote. Always compare yourself with what you were before the therapy. People improve very slowly and doubts are part of the recovery.

natgas wrote:Hello folks,

On day 17/21 of the third pulse and things are getting better mentally but seem to be going down hill physically, losing more in motor skills. Have an appt. W/ Dr. Sriram on Monday and we'll see what he thinks of the progression or the lack thereof.

It seems that there has been no effect of the flagyl after the first pulse, does this sound correct?

Roy- This doesn't sound to me like "no effect of the flagyl!" Remember, you are doing very long pulses. This implies to me that you are getting longer kill effect (an therefore cell death of infected cells which will worsen functioning if they are nerve cells) but little time for cell recovery and regeneration. My take on the lessened brain fog under flagyl is the the ATP parasitized from cells by Cpn is available for cell functioning again. But these long pulses may not give you enough regeneration/repair time in between. That you aren't getting "other" side effects from Flagyl implies that your infection is more localized in the nervous system, and you have less broad endotoxin release from other organs and tissues.

I've stayed on the doxy/azith/tini pulse and added 1/2 tab of INH. At first I had more energy, but in the month and a half I've felt like a constant low-grade die-off, with no upswing yet. Like Flagyl, it has more bacteriacidal effect. I'm beginning to think that Chuck Stratton's proposal to use INH and Flagyl/Tini together as a pulse is a good idea, giving some recovery time in between. I'll talk to Dr. Powell about this. If you add INH I'd encourage you to try it and the flagyl pulsed, with some recovery time in between. Dr. Powell's two week pulse seems about the minimum spacing to me, since the week after a pulse almost everyone reports some results of apoptosis and symptom increase.

Hello folks,

Just back from Vandy, had a good visit w/ Dr. Sriram, he believes things are going AOK, just going to take some time as expected.

Not going to start INH @ this time as Dr. Sriram would like to wait another 6 months before we change things up.

MacKintosh sorry to hear about the backsliding but all in time, like Barbara says got to have patience.

Jim that was the same consensus that we spoke about today.

Sarah, Dr. Sriram sent his greeting to you and David. I mentioned to Ram about your showing in NY and he said he would be looking for his personal invitation.

Keep the faith.

Roy

Roy - Always nice to hear your doctor say the words, isn't it? Good to hear there are no glitches! (As for me, not to worry; I'm okay and planning to be better than okay soon.)

Poor Sarah! The fates are conspiring to demand a show in this country sooner or later!

Hi Roy! I'm very glad to hear that Sriram thinks things are going fine and also, I must say, relieved that he doesn't want to put you on INH (yet?) I reason that if I have got to the stage of going for two months without taking abx but still slowly improving in that time, I must have got rid of the pathogen without resorting to something which would need me to be monitored.

Thanks for passing on the message to David and I. He will certainly get an invitation although I have pulled out of that original gallery which now seems to be running something more approaching a cattle market. However, the eternal optimist, I have better things in mind and I am working on them right now! It will be your side of the Pond.

Sarah