This Is MS Multiple Sclerosis Knowledge & Support Community

Fantastic news!

I am taking abx too for early MS.

MacKintosh please make sure you look after yourself!

Hi Lexy, Your update came along at just the right time for Steve and me. Steve is just months behind Jim on the CAP and has probably had MS since his teens, but his pattern was the same---slow progressing for a long time, and then an acceleration that changed everything. Steve seems poised at the tipping point of illness to health now, just as he was once at the tipping point of "apparent" health to illness several years ago. Your post is very comforting, as Steve is set for the cyclical upswing after heavy die-off reactions from his 7th flagyl pulse. We have been taking it slow since Steve has experienced second waves of bugkilling/reactions/apoptosis following his last few pulses (I've been calling these "2-fers"). With that much time in the un-fun part of the cycle, allowing at least 2 weeks for cell replenishment is working out for him. It's reassuring to know someone else has experienced prolonged die-off reaction/apoptosis phases. Do you think that type of flagyl pulse cycle pattern just moves the recovery process along that much faster? I'm very anxious and excited to share this thread with him. Congratulations to both of you and many thanks, Joyce (cypriane)

Dear Lexy, Joyce and friends,
I have been following this thread with great interest and amazement. The implications of Drs. Stratton/Weldon are tremendous to say the least. I am readying my self to start the protocole in the end of July and beggin the slow road back to health. I have seen a rapid deteriation in the last 3 years
and have gone from a 2 to a 6.5 on the EDSS. It all has coincided with being in the original Tovaxin study starting with the fall of 2005.
Could it be as simple as a bacterial pathogen? I am open to that and hope to be sharing my experiences soon.
Blessings to all 'ya all.
K

Thanks to all who replied.

Joyce, I remember reading something attributed to Dr. Stratton to the tune of......go as fast as you can. To me this means just what it says. Find a rhythm and go with it. Sounds like that is what you are doing.

Jim's pace, according to his doc is "glacial" but that's ok with the doc as that is how Jim needed to do it. There might be a time when we pick up the pace and as long as Jim can tolerate it, that's how we'll proceed.

I think allowing for healing is good plus too much bad feeling and our "patients" could get discouraged. I am glad Steve is doing well.

There is something to all this, isn't there Joyce? We have seen it first hand in someone close to us......there really is no replacing that experience. And once one has experienced this there is no turning back.

Best, Lexy

havingms, It's wonderful to meet any MSer who has hope, hope enough to act on it. Welcome to the fold of those moving the other direction.

Lexy, So true. It's such a joy to me to see the re-emerging glints of mental sharpness. Political opinions, playful jabs and affectionate teasing, occasional mention of small plans for the future, and the best thing...he gets jokes again. Not all of them, but many of them. About the "glacial" pace, our guys need that replenishing time for their souls as well as their bodies---and so do we. I sometimes wonder if watching the cyclical dips is worse than living it. Those up days may nourish our psyches as much as theirs. I find myself very relaxed and well-rested during those times and tense/irritable during the dips.

I don't know if your Jim can remember how he was before starting the CAP; Steve can't remember how he was at all. He remembers that he had 2 neuro-psych evaluations that were about as depressing as the diagnosis, and he knows he is not headed in that direction anymore. That's about it. You and I, though, we will never forget. Joyce

Lexy and Joyce, speaking as one of those being watched rather than watching, I think you are both wonderful in what you have done and so is David although I get a bit irritated occasionally with him watching my feet when I am tired and dragging them a bit. I should be more patient. I know that there is a lot I have difficulty remembering up until about a month into the treatment.

K, I'm glad you have come out. Soon you can start a blog of your own and chart your path with everyone else.

Sarah

Sarah, Steve also gets irritated at me observing him and asking about the status of symptoms. Sometimes I have to back off and go about my information gathering more furtively. I have two excuses, of course: 1) I love him and 2) I'm his caregiver, the one who administers his treatments, the one who makes the day to day decisions on changes and inflammation control, the one who remembers the past and projects into the future. Joyce