Vitamins

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Vitamins

EDSS 6.7 to 2.5

MSi lesions NEVER go away.  This was said to me yesterday by my neurologist who at the same visit said "If you need me, call".  He also said "No MRI- there is no indication for one"  Why is that ?  "I don't get MRIs just because a patient asks for one".   Why do you think you are better?  The antibioticsi, I said.  Silence and avoidance of eye contact.  (Sound familiar?).  "Have you ever seen this?"  I asked.   Finally I asked for the third time and sat staring.  No, was the reply.  Also, I have moved UP on the EDSSi scale from "at least" 6.7 to 2.5.  I said I have been up running around for 10 hours. 

I am  PPMSi.  I have had ONE attack and it has lasted 10 years.  I have been fighting back very hard  for over 15 months now.  Avonex is in my past which was probably the biggest shock for my neurologist.  While writing he said distractedly " Of course, you are taking your Avonex" Period, not a question mark.  I said "No, not for two weeks."  His look said that couldn't possibly be. He looked back and said " But in Sept. 2004, you said you felt great."  I said "Yes, with Avonex and steroids"

Stay flexible

This disease seems to choose an area of the body to concentrate on in its "pain of the month."  Last winter was my hips which no longer hurt.  Last summer my shoulders and neck became so painful that my range of motion became increasingly  restricted.  After many nights of sleeping on my back (I am a side-sleeper)  I can now sleep on my side again.  The horrible pains of my shoulder are pretty much gone but I have adhesions from curtailing my range of motion over many months.

 All this leads to my point- stay flexible.  Easy to say, but I have been working very hard on stretching (carefully!) my right arm which has become very inhibited in range of motion.  Now that I am more cognizant of these things, these pains are more easily differentiated from the daily pains of MS.

Not cold anymore

I had not planned on witing an entry, but with all the talk of being cold, I had to.  For several years, I have been increasingly cold below 50 F. My standard  outside clothing has been t-shirt, turtleneck, sweatshirt, snow suit and a down jacket and I was STILL cold.  This winter, after 15 months on abxi, I wear t-shirt, turtleneck, and sweatshirt.  When it has been in the 20's and 30's I wore a jacket but took it off in the barn,  which is not heated.  This is all absolutely incredible!.  My boots are not out of the closet and I have worn my sneakers every day. 

On a philosophical note, we are so attuned to instant everything that we can't seem to comprehend that this is NOT overnight.  As for my stopping abxi, I am still improving at such a rate that I will wait for a "sign" that it is time to change something.  My conviction is total that I have a chance (maybe one) to get some of me back.  I will do everything possible not to jeopardize that, and I want to see how much.

Coming up for the 15th time

The usual blinding fog has not descended and I am in the middle of day 4 of 5,  No.15 Flagyli pulse.  But my walking has held, my mental acuity also, and the worse-every-night unpleasant "shimmering, glowing sense in my legs" is almost gone.  (That is why I began this Flagyl 1 week early)  Today I will go for LFT and will after that take my Avonex which will be 8 days.  In the past I was on an ever-declining slope of physical capabiliy, wishing earlier and earlier that I could have my interferon so that I could be a little less tired and walk a little better (with cane or walker) for a few more hours-  after the reaction of at least 20 hours had passed, of course.

 This morning  I did the test for myself that neurologists love: the shin test.  All of us who can stand are familiar with that: you stand, holding on of course, and run the heel of your bad leg down the other shin.   In the past  I could not get within 3 or 4 inches except when I hit it by accident on the way from here to somewhere else.  As a matter of fact, at some point I could not even lift my foor from the floor.  This morning I ran my right heel (the bad one) down my left shin and then again and again.  Not only could I run it up and down, it goes without saying that I could PICK UP my foot to do this.  I just  now stood up to do it again this minute and did it without holding on to ANYTHING.  Perfect, or close enough!  Where is Marie????  Remember, this is 8 days after weekly Avonex on day 4 of Flagyl!  Stay with it, guys.   Requirements are  lots of patience, choking down lots of pills,  and the knowledge that you may not be what you were before this nightmare but I bet you will be better than your worst!  None of us expected to get better so this is miraculous.   And I have two strikes against me.  I am an "older patient"  (I am 66 going on 35) and I am PPMSi.  We are supposedly limited in our recovery in either case.   If this is "limited" I definitely say "GO FOR IT!

The rhythm of our days

A Flagyli rhythm is  emerging.  Maybe I was not mentally clear enough to see it before or maybe it was not there.  Maybe it is the stage of recovery or the addition of Azithromycin and NACi a couple of months ago.  My 14th pulse of Flagyl ended 13 days ago but my body is telling me to do it again.  I have become aware the last few months of not a tingling but a "shimmeriing, glowing" after about 12 days post Flagyl.  I feel REALLY good after the fog wears off (about 4 or 5 days after finishing Flagyl) then there is a buildup, very subtle at first, now clamoring, of -what?.  I woke at 5 am wondering if I could take 1 dose of Flagyl of 500mg. (in the US we have 250 and 500mg)  per day every day or if I might just begin a week early.  My walking is not as good either- not bad, but it was better than ever 12 days ago. 

Maybe I could run (walk) the Iditarod

Here I am at  Day 5, post Flagyli the 14th.  My mind is clear, it is winter (NC  version. That is why we are here- it is like Texas with trees).  I am walking really well and yesterday walked 1/2 mile over rough ground because I could.  I had admirers with me-  our 4 dogs.  They thought it was a great idea!

 

The most amazing thing is that I am not only not freezing, I am comfortable and it can be in the 40s F.  For a number of years I have worn as standard outside clothing below 50 F.: t-shirt, turtleneck. sweatshirt, snowsuit, down jacket.  It has been in the 30s F. and I have  worn only t-shirt, turtleneck, and sweatshirt, at times removing the sweatshirt in the barn.  Only twice have I worn a jacket because it was raining.  We have a down comforter that goes to  -20  and it is still put away.

Addendum to MS is not for Wimps Ch 2

These are symptoms that are ongoing and in view of the bigger picture did not even come to mind earlier today but I see that they are fairly common. I have had ringing in the ear several to many times, the last three fimgers beginning with the middle one, are somewhat to almost totally numb, I have had iritis for 18 years with two lens replacements (both eyes)for steroid-induced cataracts- not systemic steroids. Iritis was not part of the MS picture but I now have a count of 9 prisms (everything is double). That probably was caused by MS and half my hair fell out after onset of MS 10 years ago. Sounds worse than it is but easily dismissed when I think of where I was headed shortly and the fact that now I can walk, turn around, get up from a chair (or even the floor), climb a fence and go a

MS is not for Wimps- Chapter 2

Happiness may be the realization that you don't need a cape to fly (if you are Superman) or that you don't need Avonex to walk (if you have MS). One week before I take up the Flagyli thing for the 13th time. Now that it is not just on faith that I will someday see improvement but can actually expect it makes my heart sing. The hardest part may be behind me. Those are words I never thought I would say. Maybe I will call that neurologist because he may say "Let's do an MRI." Boy, would I like that. I don't think it is a delusion that I walk, talk, and think better than I ever thought I would again during the very dark, dismal days of 2003 and 2004. I only wish I could relieve my friends on these sites of even some of their anxiety and say "LOOK, friends, no hands, no walls, no canes." But we each have to make our own ways.

Dr. Michael Powell: A Rheumatologist Treating Cpn in CFIDS, FM, Lupus and other "auto immune" disorders

I spoke with a rheumatologist in California, Dr. Michael Powell, who is cautiously using a combination of antibioticsi in conjunction with standard therapeutics for the treatment of nanobacterium (including Cpni) in patients suffering from FM, CFSi and autoimmune disorders. His results with this treatment program have been encouraging. He faxed me some examples of patient feedback forms, excerpts from which you can see below. Recovery is not instantaneous, but tends to occur over a 6 to 12 month period. The graphs of subjective improvement are drawn from visual analogue scores compiled during each visit. When summarized in this manner these data give a time-lapsed impression of the response to treatment.

One of the interesting things he mentioned was in relation to negative patient serologyi for Cpn when other clinical signs lead him to suspect some involvement. Serologic assays for IgGi, IgM and IgA are sent to confirm infection prior to treatment. He would like to see a positive serologyi in patients before engaging them in a combination antibiotic protocol, but recognizes that patients may not have antibody reactions. This may be due to the ability of intracellulari organisms like Cpn to evade a humoral response (antibody production), immunoglobulin depletion, or other factors. In these cases, when there is a high index of suspicion for the infection without a humoral response, he tests the spouse of the partner for Cpn. He sees the "non-symptomatic" partner as a good indicator of Cpn in the patient, given the infectious nature of Cpn. Thus far, most spouses are positive when an ill family member is non-reactive.

In our discussion Dr. Powell pointed out the many similarities between TB and Cpn.  Both organisms  can evade our immune system.  Both organisms can be carried from the lungs, the original site of infection, and infect other tissues. Both require prolonged treatment with multiple drugs to eradicate the infection.  Both are sensitive to stress levels. Optimal therapy is being evaluated at various research centers and new medications for Cpn are on the horizon (see activbiotics.com).

INHi and supplementsi for endotoxinsi-
Dr. Powell finds most patients improve on a standard combination antibiotic protocol for Cpn. Rheumatologist have apparently been using doxycycline for many years with success for inflammatory arthritis but there is evidence that using doyxcycline in combination with rifampin is even more effective. Some patients plateau after about 8 months of treatment he has found variations in the treatment protocol have made a difference. One protocol he uses involves the use of NACi 600 mg twice daily, INH 300 mg once daily before breakfast, and metronidazolei 500 mg twice daily pulsed with 5 days on and two weeks off.  It is essential to start each agent separately and gradually increase the dose over weeks or months as tolerated.  The use of Vitamin C 500 - 1000 mg four times daily (the half life of vitamin C is 30 minutes and little remains after 3 hours) to offset the release of toxins during therapy.  B6 is important to control INH related peripheral neuropathy.  Monthly laboratory evaluation of AST, ALT, Cr, and CBC are recommended for all who engage in this protocol.  It is not uncommon for liver enzymes to show a mild elevation during the initial stages of treatment.  Antibiotic therapy should be temporarily discontinued during periods of toxicity, should it arise. He emphasized the importance of insuring that yeast and fungal infectionsi do not overgrow during protracted antibiotic use. He recommends the use of acidophillus, nystatin, diflucan, oregano oil, and/or grapefruit seed extract as needed to prevent secondary opportunistic infection during treatment.

Covering for the possibility of yeast and fungal overgrowth during antibiotic therapy is essential.  If diarrhea develops, stool must be evaluated for antibiotic associated diarrhea (C. difficile).  This is not a simple protocol and it is best if it is guided by an experienced clinician who is familiar with the medications and methods of minimizing toxicity related to killing the nanobacterium.

A link to Dr. Powells clinic may be found on our links page. Dr. Powell does do telephone consultations by arrangement and may be a resource for those who have had difficulty finding a Cpn knowledgeable doctor in their area. He requires an initial visit with a physical examination before initiating therapy (lab work can be performed prior to the initial visit to facilitate diagnosis and treatment), and monthly laboratory testing with monthly phone consults are then the norm. Treatment of related hormone imbalances in the thyroid system and nutritional support, temporary antidepressant support as needed, and sleeping medications are useful adjuncts to the antibiotic protocol. It is necessary for patients to have a primary care physician to monitor health matters that are unrelated to FM, CFS and autoimmune disease.

Supplements: Research, Monographs

This page is almost a separate research page, but this time focused on supplementsi, or natural substances which work along with the protocols or with the diseases primarily addressed on this site.

Watch for it to grow as new links and info are added! Have a link to research or information that applies to the topic of this page? Post it as a forum topic or email mrhodes40(me) or Jim and we'll add it if it fits.

Alpha lipoic acid and MS with David Wheldon's comments<

Folic acid, Folate and B12 along with Stratton comments<

Dr. Powell and comments on niacin<

Melatonin with comments thread<Quinolinic acid is an excitotoxin that induces oxidative damage. Melatonin prevented this damage.

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