Alpha Lipoic Acid

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Antioxidant supplement.

Persistence by any Other Name

.....perseverance, defiance, stubbornness, terror, bull-headedness - these all apply. Another level of recovery has come, another mountain has been climbed. Beginning 16 days ago, I clipped goats, packed the showboxes, mowed, did daily upkeep and in general worked like the proverbial dog. (That somewhat mystifies me because our dogs don't work very hard but that will require more thought.) So we got to the show and spent Friday clipping 18 bodies (the legs, heads, and tails were clipped and feet were done), spent Saturday in the ring, except during the famous PPMSi Clan meeting, went Reserve Grand Champion, went out for a well-deserved meal, then sleep.

Blurred Locomotion, Fuzzy Reality

It has happened again - tinadazole is easy for me but the aftermath is no gain. Last year I did three pulses of tinii because of the National Dairy Goat Show - I simply did not have time to be "out of the loop" - (loopy, that is!) so it was an excellent time to try this magical drug that didn't send you reeling to the bottom of the well. After days of waiting for events to occurI realized they weren't going to. They didn't; nothing happened that I could tell, except that my walking became - well - mushy. So I went back to flagyli. I have done nine or ten of flagyl with very clear- cut inprovements since then. Spring came (?) again, bringing 23 kids (one of these days, we will figure out what's causing that!), hours in the barn, classification, etc.

Striking a Balance in CAP Treatment

My hamstrings, left knee, and glute's are crying out for a Flagyli pulse, but I am afraid of the deficits in my left hand and parasthesias from the last one. I think this is the longest I have ever delayed a pulse and my knee is very sensitized and irritably swollen to show for it, often giving way beneath me whilst attempting to go about my daily business. I have been able to tolerate 600mg NACi daily now for about three weeks and about 1000iu's of D3/day as well. Lots of muscle tightness and pain, which makes me really wonder about the replicants/EB ratio model. It makes sense to me that the increase in aches and pains[which make ambulation nearly impossible]seem to correlate with the image of EB'si spiralling out of control due to many months of taking doxyi and azith. Hmmm..

ruthless1, Canada

Multiple Symptoms, here is my diatribe!!  I was new to the site April 06 & I have Fibromyalgia-FMSi, Chronic Fatigue Immunei Deficiency-CFIDSi/Myalgic Encephalomyelitis">i- ME, Chronic Lyme Diseasewith the usual cornucopia of underlying symptoms, crashes, flu like symptoms, migraines including CPNi, Babesia & recently hereditary genetic Hemochromatosis. 

Lest I forget...

Just a few updates here. Still delaying pulse 16 as I continue to have bothersome parasthesias in my weaker arm/hand. Still cannot cup my left hand very well--almost seems to come and go. As per the trend lately I have increased from 2000 to 3000iu's D3 each day and have noticed much more spasticity--hardly slept last night. Of course, I forgot my cal-mag last evening...oops! The restless leg thing was quite annoying, however I had doctor visit today regarding all of my psych. meds. I know the wellbutrin SR makes me feel drugged and agitated all at once, but it successfully kept me from just wanting to sleep all day. I rarely need a nap anymore so will begin decreasing it very gradually, and the same with zoloft[vitamin "Z", I call it--lol] eventually.

Going down for the 40th time

Before I submerge too far I thought I would do a short blog on the "feel good" time between my 39th pulse and the one (#40) that I began this morning. The message I want to convey is: it did take the 11 days of recovery but then last Saturday, the 19th day post-pulse, began the best days I have had since 2003 and better than many of 2002. As I hoped for, the rather brutal attack on my hips and knee resolved itself and took that pain and some more brainfog and vanished like morning fog being burned off by the spring sun. It has been a really, really good week with many hours of hard work, which I happily welcome. A second point is that I have been able to extend the time between to 24-25 days. My legs spoke last night but in muted voices - I could barely hear them.

2 1/2 years - now this?

For a very long time I have believed that my post-flagyli was a mirror image ot my pulse. This one, number 39, a REALLY good one, made a fibber out of me. Number 38 was abbreviated to 3 days because we had very special company coming from Canada and I sailed right through it. But I think the last two day's targets were saved up and gunned right down at the very beginning of the next pulse. I hereby pull out Jim's old descriptive word - slammed. This pulse took 11 full recovery days during which every step was agony and attacked with real vengeance in addition to my right hip, my left hip and out of absolutely nowhere, my right knee. Suddenly, in a few hours, it vanished. But now my knee bends when I walk!

will eight be enough?

...only time will tell as I get set to embark on my eighth pulse. It was a bit harrowing to get prepared for this pulse as my initial six month prescription for things had run out and I had to get them renewed. Either the pharmacy or the doctor's office messed up and it took a day longer to get them all renewed. I was a little worried there but it was for naught and I was quite relieved to pick up my prescriptions in time to start tomorrow.

Too many battles, not enough troops

"Veterans" also take "falls", or the plodding two steps ahead and one back , sometimes a big one.  Last weekend both Richard and I got whatever was sweeping through the populace.  He, being a pediatrician, has been exposed to virtually everything and consequently gets almost nothing.  So, when something gets through his defences, it is a good one, and he had already shared it this time.   We both spent two days and more flat.  He is now up and running while I am kind of shuffling along behind.   I debated putting this  "on paper" but felt it should be noted:  in a matter of hours - about one month per hour - I regressed in my abilities, walking, energy, thinking.   It was as though my body had too many battles going on simultaneously and couldn't cope.  So we coddled ourselves, eating exceptionally well, sleeping lots (fortunately Dr. R. was not on call that weekend) and got better, which probably would have happened in any case.  BUT - my walking came back as fast as it left, reaching the point by Tuesday night that we could begin flagyli (just can't get enough torment).   I still have a really bad cough but this has not descended into my chest, which has always happened since I was a kid, certainly with a cold comparable to this.  However, right on schedule, a day or so after the first flagyl, my right hip and knee  began  a giant ache.  This has been the main focus for the last three pulses, having pretty well cleaned up my neck, right shoulder (not QUITE finished there), my lower back and other various lesser targets.  Amazing, all this. 

Twenty-eight months - a marker

In the 28th month of relentless, daily treatment, I feel that I have earned the right to stand at the vantage point of a second or third tier trailblazer.  I stand as Pancho to Don Quixote or Tonto to the Lone Ranger.  There are a couple of operatic characters nibbling at my sub-conscious but you get the point.  My first piece of  loud vocalization is as Guner said:  "You may get discouraged, but don't give up".  Jim wished for each of us in his discourse for the new year the stubbornness and long, long vision (and I modestly add: courage) it takes to  do this.  I have a very real problem with sharing MY body with all the freeloaders who are doing just that.  I am indignant - I have worked very hard for my place in life and the workplace and when I found that these nasty little devious creatures were stealing my life, I had to fight back.   After spending much too much time in their immediate presence and on their level, I am leaving them behind.

The Final Chapter - it Never Ends

It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence.  We can accept that.  We have learned  to adjust, to be grateful for the chence to do the battle, and to sing the praises of  getting better, which were not chapters in the volume before this someday best seller.

My 36th pulse will begin soon.  I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so.  My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct.  My question has become my mantra -  why don't all MS patients give this "a try" for a year?  There is so much to be regained.

Rica 

Hope, Disbelief and Reality

Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope.  Then came the months of disbelief and "I couldn't do that before", about  twenty-three of the two together.  I am now in the reality phase and I love it.

My visit to my doctor was a few weeks ago.  For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more).  Just as "normal" people could do, I did all with an A+.  I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker. 

The Water Less Murky

Hoping to postpone this pulse for a month, I was enjoying my newly resumed "winter schedule" of many fewer hours in the barn and my measured walks.  Well, my body, particularly my legs, said  "No you don't, not yet!".  Yesterday, I took charcoal for the first time in a couple of months (!) but to no avail.  My legs quietly spoke, though did not clamor as in the past, that I would ignore their demands at my peril, or at least my inconvenience.  So, this morning I began pulse number 34, this time pure flagyli.  I can't say I don't have anything against tinii, but being of sounder mind than body at this time, I need what flagyl gives me - physical recovery. 

Pulses 32 and 33 were:

#32 - 5 full days of tini which by day 5 had me rubber-legged though energetic.  My back felt and sounded  like a bag of wooden balls, well-oiled and rattling around as though their job were to make as much noise as possible.    Not at all unpleasant, this was also a curiously clean feeling.  My walking continued to deteriorate in the next week.

flagyl and tini - the ongoing discussion

This was my 33rd pulse  (29 flagyli and 4 tinii)    On Sept 27 Dr R and I began 5 days of tini, each taking 500 mg 2xd.  Dr R has no observable physical changes so I will limit this to my own.  I was able to work all day every day in preparation for the show where we met Ken and Kelly,   All exhibitors must be on site because that is when the youth show is, so we had time to visit.  The next day we arose from our cots by the doe pens at 7am, showed all day, Richard packed up most of our "stuff" (of which there is an astonishing amount), and I drove us home the 200 miles, arriving about 1 am, when we milked and fed  By way of bragging, we went Junior Grand Champion, Senior Grand Champion,  Best Dairy Herd in Show and Premier Breeder.   As expected, my reaction to tini had me increasingly rubber-legged but full of energy.  Folliowing up on my suspicions of previous tini pulses, I began flagyl 8 days after ending tini with amazing results.  Since the State Fair is this coming week-end I abbreviated the flagyl to 3 days, because on the heels of tini I was afraid I would descend too far down the road of weirdness to return  and be able to walk well by then.

4 days on...

Saw David Wheldoni on 15th September 2006. A truly heart-warming experience. 

4 days on the CAPi now. For RR-MSi<

 After 2 days on doxycycline, I noticed I could stand with less stiffness, which I am imagining could be due to the anti-inflammatory effect of the antibiotic. Pins and needles are already reduced!

 This morning, I was somewhat foolish and tried the doxycycline and NACi on an empty stomach. Not a good idea. Quite nauseous. Won't do that again in a hurry.

 No real die-off symptoms yet. I have a feeling I may have kept my bacterial loadi down over the years with constant vit c and other antioxidantsi. I can't help but feel my MS would be worse than it is if I hadn't supplemented so furiously over the last 3 years.

 Anyway, I am going to try and keep this journal ongoing. Probably in weekly installments.

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