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My husband asked me this morning if I was ok because I had sat down to rest. I realized I had to answer that I could not begin to tell him all the things that I could do. There it is again: the vagueness. But to enumerate those things would now take all day. I fixed my trike this week, an accomplishmen in itself- no bike yet and wouldn't try anyway so that is something I CAN'T do. OK. But I am doing self-imposed physical therapy. Re-educating especially my right leg which no longer did anything but hold me up sometimes if I kept my eyes on it. My speech is no longer slurred though tangled might be more descriptive. I knew it was there but no one else had said anything - yet. My right hand is not dropping things anymore. People say "Everyone drops things". I say "This is different". But again, if you haven't been there, you can't possibly understand. Which brings me to the very personal point which is- we are coming back from a place no one has ever come back from. We see comprehension in the faces, letters, and symptomatic relief. of others. But maybe I speak only to other PPMS people. We have never had a remission. and we seem to accellerate in our downward - it is not spin because it seems to be a very straight line to the bottom. I know now that I have bounced. Don't know where I will stop but if it were here, I could live with it. I countine my very strict regimen of abx and supplements and will for months. Don't know if I will ever run, but maybe I will make that my main criterion. I am certail=nly not up to my past daily standard but am up from a grim, dismal 3 to 5% to a strong 25 to 30%. That is for Marie! A number but still a guess.

By the way, I have a question. I started charcoal very late, about 6 weeks ago. It is very important, but I somehow missed it. Since starting it, I have been through 2 Flagyl pulses, both noticably better than the twilight fog from the first 6. I began abx late Sept., 2004. But the really weird thing is sleep. Never in my life have I had trouble sleeping- I am like a babydoll that you put down and the eyes fall shut. But with charcoal about 11 pm, my sleep is very restless after until I( we get really personal on this site) go to the bathroom. Then i am OUT for the night. Unmistakle. It keeps happening.

Rica

I spoke WAY too soon- in other words - don't be smug! The last 2 days were a retrospective visit to last winter. I have had a horrible cold and INCREDIBLE Flagyl Fog. I have stabilized my dosage at 375 mg 3x a day and with "grim determination" finish the 5 days. There is an expectation of fog but it burns off in 5 days and is barely noticeable at the end. But this time was pretty horrible in combination with the cold. Monday abd Tuesday I functioned at the level just above the bacteria that put me where I am today. Day 3 of an unusually clear post-Flagyl is today- a whole new world- I say that in a true sense- Hurricane Ophelia is just outside my door. My head is clearer than a long time, my walking which was much deteriorated yesterday is at a new level of improvement today.

Last week I did not mention that my left hand was pretty numb and tingly but in view of Roy's exciting post I should. He said his foot has some feeling now after a long while of not having much. That is the way my right leg started. That is wonderful news! This month my shoulders ache and my neck, too, but my hips still don't hurt after months of real pain. I have always clucked my tongue at soap operas but not at this one- we have our own and it beats anything Hollywood could dream up. I see my neurologist a week from Friday and I will probably tell him he is missing the boat . Does anyone remember when it was thought ulcers were caused be diet and Dr._____ said they were caused be Helico bacter (Sp). Guess what world- he was right! He also was laughed at. This is bigger.

Rica

When I started reading your post, I was about to say "Stop the flagyl at once," not realizing that you had finished already!

The pins and needles are a bit like when you have been crouching down on you heels for too long and your legs go to sleep, then they start to come awake, isn't it? Uncomfortable for a while, but worth it. I don't know what your neurologist will say, but you are right about the diet vs. helicobacter episode.

Sarah

Yes, Sarah, the sensations are as though I have been crouching and then got up. In the past, getting up would have been as a child learning to walk- both hands on the ground, straighten the legs, and push/pull yourself to a vertical though precarious position.

Today is day 5, series 9 of Flagyl. This is such a strange experience, this MS antibiotic treatment. I would almost swear, if I didn't think I would be locked up, that Flagyl works for me from the bottom up. First, my right foot, of the leg filled with sand, no longer (starting about April, 2005), felt always badly bruised on the bottom. Next, my hips which always horribly ached all last winter and spring, stopped hurting. Then my shoulders started hurting and became more and more limited in range of motion (avoidance of pain) in the last few months, increasingly so during my last 2 Flagyl pulses. Now my shoulders are getting better and my vertigo has become a slight spinning of my surroundings, especially when I stand after leaning over, which I could not even do before May without falling down. My right great toe is normal now, no longer spastic and standing straught up like a sunflower greeting the sun. That was a very bad Babinski reflex no doubt. But I no longer have the spasticity that I had 6 months to 5 years ago, maybe longer. I am only on day 3 of Flagyl. I thought I better write this today because I know this is going to get worse, peaking on days 5, 6 and 7 after starting this course.

Wow Katman! You sound great! So I take it if you get a cold, bail on your flagyl until you're over it? That sounds plausible. And getting so you do many things. That is fabulous. Thanks for the 30% number. I am myself getting used to the vagueness of it as I have started the abx and am somehow "subtly worse" . But I think we do well to try as best we can to quantify what we are doing. When are you due for an MRI?

Day 5 series 9. Do you do flagyl every 3 weeks? How long did it take you to get to the full 5 days of flagyl? ANd what are you taking now for abx combo? I think it is interesting that it works from the bottom up. Most people with MS lose function from the bottom up, I sure did. Is this an exact reverse for you? Maybe that makes sense. And about the tingle, I've always thought a severe tingle was good....like after the dentist numbs you for a cavity as it comes back it tingles like crazy, so if something tingles me I think Ohh something coming back! Good deal! My foot and lower leg are dead. I can't wait for a big tingle!
Great news Katman! When you have a trippy day like I did today (I took my cane to the gym first time ever after a big fall two days ago there But I felt sad being there with a cane in hand. Like I always felt good I could do without it) it's great to come on line here and hear about other's improvement. You guys are the real heros stepping up when there were so few to be mentors. And Sarah, the biggest one. She could have kept quiet about what happened to her, but she shared openly and now we all beneifit. Thanks to every one of you telling your story so others can hear.
BLessings
marie

Marie, I just found this response to my post after I responded to your other one. I LOVE what you said about the vagueness! It must go with the territory. I think MS has its' own language which can't be learned except by doing. So what does THAT say for neurologists?

I don't know when my next MRI will be. I had one in June ("no worse") and may in Dec. My neurologist cancelled me this month and I am taking this opportunity to change neurologists- spread the word, I hope.


Food time.

Rica

It says not much for the neuro's!

You asked somewhere else should you add azith to the rifampin and doxy. I do not think I would personally. Azith and rif are both macrolides and inhibit the replication of proteins in similar ways. You could potentially add amoxicillin as the VU people do to force the EB's into transforming so they get trapped by the rif/doxy. Apparently, you can have a pretty large EB load hanging around untouched by the bacteriostatic drugs. To address this, VU uses amoxicillin along with doxy/rif to cause the EB's to convert to RB's where they are trapped by the doxy/rif combo in an anaerobic state which is threatening to them. You can read a bit about it in the interview CPn Help/?q=node/68/15#comment-15 Jim did with Dr A on CPn Help.org. Jim himself noticed a new level of herx like reaction after adding amox recently and he had been fairly well beyond all that before, being many months into treatment. He still is not up to full dose. They discuss the possible mechanism for this in the interview.


Dr Wheldon does not feel the amox for the EB load is necessary and gives an explanation for why somewhere that I can't find right now. These things are in evolution. I personally would want to pulse my flagyl as Dr wheldon does and would not use it full time as VU does becasue it makes sense to me that your brain is going to react to the endotoxin released locally in your brain when CPn is being killed. This will result in inflammation and oxidative damage. To me, letting the body do repair between pulses makes sense. But then you may be getting ready to do a big pulse you said. Different ideas! Just a thought to evaluate with your doctor ...
marie

Rica- Your grim determination to get through the flagyl pulse really amazes. I can finally do a full 5 day pulse, only on Tinidazole. I don't think I ever made it through more than 4 days on Flagyl.

The best thing I found for that day 3 of flagyl/tini pulse where I feel really sick and crappy has been Vitamin C flush: 1gram of buffered C powder in h20 every 15 minutes until you reach what is so prosaically called "bowel tolerance." You have to clear your morning for it, but I feel much better for the rest of the pulse. Didn't even need it last time, though.

As Marie noted, my conversation with "Physician close to the Vanderbilt Work" really convinced me that my reaction to adding amoxi, after having been on doxy/zith/tini (flagyl originally) for 11 months was a good indicator of high tissue load of EB's. Those RB's just produce lots of little EB's, but only so many EB's can attach to and enter cells, so they build up in intercellular tissues: knees, joints (my sacroilliac went into spasm), muscles, God knows where else. That amoxi sure showed me where they were hanging out!

Amoxi dismantles the EB membrane and kills it. I think David said to me that he doesn't use it mostly to keep the protocol simpler and less overwhelming, and finds that rifamcin (which destroys the enzyme required when EB's transform to RB's, killing them during the transformation) eventually does the trick. David likes the azith or rozith/doxy/rifamcin combo with the flagyl pulses. Stratton likes azith/doxy/rifamcin/amoxi with flagyl (originally) on a continuous basis, now says the pulses are fine. He believes you have to get it in all of it's phases, hence the amoxi. It may be most important to those of us with high tissue load, such as CFS/FMS types.

Personally, I can't imagine doing continuous flagyl:!:

Looking through some patent materials which Chuck Stratton sent on to us at CPn Help (not yet posted there) I extracted the following from a patent application for "ADJUNCTIVE PHYSIOCHEMICAL AGENTS THAT INACTIVATE THE INFECTIVITY OF CHLAMYDIAL ELEMENTARY BODIES"

The inventors have discovered that EBs infect host cells by attaching to and entering secretory vesicles from regulated exocytosis when these vesicles transiently fuse with the plasma membrane in order to release their secretory proteins. When these vesicles are recycled to the trans-Golgi apparatus, the acellular infectious EBs enter along with them.
Acellular infectious EBs must await the availability of these specific receptor sites involved in regulated exocytosis before they can enter host cells. The result of this delayed infection is the accumulation of infectious acellular EBs. Although the existence and importance of the acellular HIV-1 load has recently become recognized (70-74) a similar acellular EB load in chronic and/or systemic chlamydial infections is not recognized in the current teachings and practice of medicine. In contrast, the inventors have discovered that infectious EBs of Chlamydia pneumoniae are readily recovered from blood cultures of many adults suggesting that this pathogen does indeed cause a chronic infection of arteries and veins, thus creating an acellular EB load.
The phenomenon of acellular load already has been found to be important in HIV infections and will clearly be of great clinical importance in chlamydial infections. This is because these metabolically-inactive, non-replicating infectious acellular EBs escape the action of currently used antichlamydial agents. The presence of these infectious acellular EBs after the completion of short courses of antimicrobial therapy for chlamydial infections has been discovered by the inventors to result in relapse and the continuation of chronic infections. Thus, the duration of antimicrobial therapy required for eradication of systemic chlamydial infections is, in part, dictated by the acellular load of EBs.

Inactivation of Chlamydial EBs.
The inventors have discovered a unique class of physiochemical agents that can be specifically used to inactivate infectious acellular EBs. Unless acellular EBs are inactivated, antichlamydial therapy for these chronic infections must be continued until the acellular EB load are eliminated. Currently, this means that these acellular elements have infected human cells. This clearly is undesirable as it prolongs the therapy of chronic chlamydial infections which increases the opportunity for resistance to occur (91).
The inventors have discovered that infectious acellular EBs can be inactivated by the use of thiol-containing compounds and seek a patent for this use. Specific thiol-containing compounds that the inventors have discovered to be effective include meso-2,3-dimercaptosuccinic acid (meso-DMSA), an oral chelating agent currently used to treat lead poisoning (92). Meso-DMSA is a weak acid with four ionizable hydrogens. Moreover, meso-DMSA has two highly charged carboxyl groups which prevent its passage through human cell membranes. Meso-DMSA thus remains in the extracellular fluid where it readily can encounter acellular EBs. The two thiol (sulfhydryl) groups on the succimer molecule are able to dissolve disulfide bonds in the outer membranes of acellular EBs.
The disruption of these outer membranes of acellular EBs results in physiological effects . The dissolution of the outer membrane initiates the transition of the EB form to the RB form. When this occurs in the acellular milieu where there is no available energy source for the chlamydial ATPase, the nascent RB perishes.
The inventors also have discovered that other thiol-containing compounds can inactivate the infectivity of acellular EBs. One compound is penicillamine (93,94) which is used in low doses (250-500 mg per day). Penicillamine, D/L-ß, ß-dimethlcysteine, is a sulfhydryl amino acid which was first isolated in 1953 from the urine of patients with chronic liver disease who were receiving parenteral penicillin. Its use to inactivate infectious acellular EBs, however, is somewhat curtailed by a variety of undesirable side effects (94) which do not appear to be problems with meso-DMSA.
However, the inventors have discovered an alternative method of providing the release of penicillamine or penicillamine-like agents under physiologic conditions that avoids the issue of side effects. This methhod is simply to use oral ß-lactam agents which, in part, appear to be metabolized in humans to sulfhydryl-containing molecules such as N-formylpenacillamine or penicillamine (95).
...Indeed, the inventors have discovered that oral penicillins such as amoxicillin can be used as a low-cost alternative to meso-DMSA and penicillamine. The in-vivo production of penicillamine or other degredation products containing sulfhydryl groups from this in-vivo degradation of penicillins undoubtedly accounts for the known in-vitro ability of penicillins to reduce or prevent the development of infectious chlamydial EBs in cell cultures (89-94). Moreover, a murine model was used to evaluate the effects of oral treatment with oxytetracycline, ampicillin, and amoxicillin against an otherwise lethal intranasal infection with Chlamydia trachomatis. These investigators found that amoxicillin had the lowest mean protective dose for both seven and fourteen days of therapy.

Jim - Wow! Thanks! I printed it out so I can look up a few of the big words but it sounds good. I'll look forward to the full text at CPn Help.org but this gives me something to chew on for a few days.

I'm on day three of abx. Ready to kill the beasties....

Hello friends and fellow sufferers

The show was a smashing success. First things first- a little bragging! We took Jr. Grand Champion, Senior Grand Champion, Best of Breed, and Best Udder in Show. Exciting to be coming back after cutting our herd in half last year because of my diagnosis and obvious downhill progression. We must have kept the right ones! At that time I truly was afraid our goat hobby days were coming to an end after almost 28 years. By the way, I was in the ring showing. I also went in last May when I used my walker to get around that big barn but was more stable this time and went in several times.

Showing was not the only thing on the docket. The goat world is a curious mix of professions. I told ALL the medical people and everyone who knew anyone with MS about "our sites" to tell these people to visit. All who were there either had seen me in May or knew of my MS. Without exception they were amazed at my progress.

We have the State Fair two weekends after this show just past so I am fitting in a Flagyl pulse between. I began yesterday morning and wanted to write then because of the fog but interruptions happened. Soon after the second dose at noon I was blind-sided and unable to think in a ligical, linear way. Very early in the pulse for such a jolt! Which reminds me- saw my regular doctor yesterday. He was astonished and said again that he has NEVER seen this in MS. I asked him if he minds if I spread the word with one of his patients whom I know of and he does not mind. I gave him the three site addresses and he will look. He also said "American drug companies are not interested in finding a cure for MS"

My walking is better than for four to five years but my energy level is probably even better. For example, last week I clipped goats and packed for the show- a huge job- got the trailer ready, and we loaded the "stuff". Friday we milked and fed, loaded, drove 200 miles in incredible rain, (I do all the driving here) unloaded and milked, showed all day Sat - no, not Sat- Youth Show and Sun, drove home till midnight, unloaded, milked and fed, slept five hours and got up. I am still not tired. I simply could not have done all that last year without being flat with fatigue.

I told Dr.______ some of this and about "us". He said this should be published. He knows the neurologist I am going to see this month and likes his attitude.

The lab just called about my LFT yesterday- SGPT 81 and SGOT 30. Avonex which was 5 days prior to the LFT makes a big spike that lasts about 36 hours but the abx makes only a slight elevation that is always there. Our diet is pretty good except for the occasional Mexican food and the cheese that I can't seem to do without. Still can't run, though. Greed speaking. I can walk!

There are some eager and intelligent new faces around here. It is getting like the goat world- close and caring- very wonderful.
The more of us there are, the more we have to think we are on to a good thing. Anything that brings us back from that black sea of misery is well worth the discipline and small sacrifice.

Wordy, wordy.

Rica
.

Rica -- How flat-out WONDERFUL for you! Bravo!

Thanks MacKintosh

You have been on abx for right at one month, I believe. There are probably many of us who are waiting for your first awakenings. And who says small-town living is dull! With you, Barbara (LifeontheIce), Roy (Natgas), Marie, CureOrBust, and Kitkat life is certainly full. The rest of my life is pretty exciting but I'm not always sure which is "real life"- especially when I am on Flagyl!

Rica

Congratulations are in order Rica!!! Great job on both.

Roy

I saw with horror that I left out JimK. Must never forget Jim- he is, or now WAS, close to the bottom of our heap of symptoms! My apologies, Jim! And my thanks for doing the great service of CPn Help.org Sorry if I overlooked anyone else.

Rica