Submitted by mswillow on Sun, 2006-01-29 23:36

Sorry about my post yesterday. Endotoxins from dying C. Pneumonae make me miserable, achey, restless, fatigued. Pain I can handle; aches are a different story. Pain triggers endorphins. Endorphins get you high. That feels good. Aches just trigger misery, malaise, and depression, a feeling that life like this isn't worth living.

I know why I'm miserable - I'm fighting for my life against MS. From what I'm seeing, I've got the upper hand. I'll only lose if I give up, and I won't give up. Sure, I'll whine, and wish I felt better, but given more time I will get better, stop aching, and stop whining.

Please, just bear with me. Oh, and good news - adding Alcar didn't mess up my stomache. Yay!

Adding supplements

Submitted by mswillow on Sat, 2006-01-28 21:39

Still playing yo-yo on my recovery. Achey all night, and most of the day too. My grip strength is nearly zero, and that affects typing, eating and dealing with my contact lenses. I can stand up, but moving is very difficult. I'm constantly cold, but drinking green tea with honey helps. Recovery sure is slow.

Tonight, I'm going to try adding 500mg of acetyl l-carnitine to my regimen. I recall this was supposed to help repair nerve damage. Hopefully, it won't mess up my esophagus, now that I've stopped NSAIDs. I'll take these after dinner, to help cut down on acid build-up.

If I can tolerate Alcar, I'll try adding 150mg ALA, and maybe co-Q10 a well. I have a bottle of Niacin - should I add that, too?

Wobbling Through Purgatory: Been Down this Road Before

Submitted by raven on Sat, 2006-01-28 20:19

Treatment time is like travel time---it seems like you will travel on forever and then you arrive at a new destination that is much like the last place you visited. Only different in many ways.
Just finished my 6th round of Flagyl and did not escape the misery it brings. Charcoal, my Sooty Friend, is the thing to take mid-morning, mid-afternoon and evening. But fitting it in between food and suppliments is sometimes hard. I have to keep reminding myself of what it does and how valuable it is.
Talked to my tour director Dr. Powell by phone and he told me to get some Niacin as well as B5 and B6. (And the hilariously-named Horny Goat Weed as well.) I had a hard time remembering what that does. I wrote it down but brain fog is buzzing in my head lately.

I took some time to read the web site that Ines Neihaus put up about her encounter with Samonella endotoxin.

1st day of 7th Tini pulse: first one on INH

Submitted by Jim K on Fri, 2006-01-27 16:06

I thought I'd mark this startup of my first day on my 7th tini pulse, and the first one I've taken having added INH (currently at 150mg). I have no idea what difference being on INH will make, if any. Theoretically, one would think that it's increased potency for Cpn might drive more RB's into the cryptic phase than the other abx I'm on, making for a bigger die-off reaction on the Tini. I had about three days last weekend on the INH of feeling a surge of energy and mental ability, then during the week the endotoxin reactions (cold, fatigue, ache) came back. Today on the Tini I had some wave of aches, but feel a bit more energy buzz as I often do in the first hours of a pulse, before the toxin release gets too bad. At least I know that a Vitamin C flush on day 3 usually does the trick. I'll report in as this pulse continues. 

Highest Order Swamp-Dweller

Submitted by katman on Fri, 2006-01-27 11:20

Taking Marie's admonition to heart I am reporting while measurable achievements are fresh.  That sentence being one of them to compare to a year ago.  Day 1 of my 18th pulse I began my daily pushups (only 10) and situps again.   I stopped these last year due to lack of interest and inability. I can only manage 10 situps but I'll get back to my old 25 soon I hope.   My run/walk was suspended for a few days (still suspended)..  Early in this pulse (day 2 or 3) I could only do 5/8 of a mile instead of a mile, and it took 20 minutes or so.  Now, on day 5 I am wobbly (to borrow a phrase) and not sleeping well in spite of taking 1 1/2 melatonin (I believe these are 300mcg pills) last night.  There is no doubt that for about 10 days my body is at war and my mind is fuzzy - as opposed to foggy.  In other words, do not be alarmed at regression during pulses- the rewards are huge but not instantaneous.

The March of Cpn out of my system?

Submitted by LivingOnTheFence on Fri, 2006-01-27 01:53

While the myalgia I initially experienced seems to have calmed down.  It appears my chronic sinusitus has flared up in full force.If I am not experiencing complete congestion, I axperience a constant burning post-nasal drip which burns the back of my throat.  I know I am clearning the organism but whish it could be more comfortable.In the olden days, I would have used pseudofed or an antihistamine.  Not sure what to do here.By way of Hx.  It was chronic sinusitus and feelings of dizziness, fatigue and disorientatation that first sent me for an MRI.  It turned out to have multiple demyelination in al lthose MS type spots.   Two years later I got my first undeniable attack.I am also sleeping up to 12 hours a day.  The sinusitus used to force me to take naps but this is becoming a way of life.  I took time off from my job because I was falling alseep behind my desk. 

MRI Results

Submitted by katman on Thu, 2006-01-26 17:18

Results from MRI no. 5 Jan. 21.2006   -  "no worse- stable- WOW" This was on the report from my doctor.  I spoke only to the nurse.   This is 6 months after no. 4  and is news that any PPMS patient of 10 years would probably be thrilled to hear but I admit to hoping for a really earthshattering statement but this is good progress and we should all be satisfied that an important marker is noted.    For myself I must remember that Sarah went 2 years, I believe, before  HER earthshattering marker.   The main thing is physical progress which goes by mostly forward bounds with a good dampening  during Flagyl.  We will likely accept the offer of the local radiologist (he is actually a rotating radio.) to examine all 5 and see if he embellishes any.  Apparently not even this happens in PPMS cases like mine.    Remember, last month my neuro said MS lesions never go away.  Sarah has already proven that is wrong.  I would appreciate any comments David has.

OK, supplements then. Diet as well.

Submitted by paron on Thu, 2006-01-26 12:16

My doctor's completed his research for the time being. Conclusions: I am to follow the Stratton Protocol (V.7), as far as diet/supplements, skip Wed's Zith, and take Friday's. Added a scrip for xanax -- I said when asked that I felt anxious when I couldn't breathe right. Well, that's natural, right? I wonder how many people say, "Oh, no, I love it when I can't get my breath." Useless question. Dianna, though, agrees with the Dr. -- it's really that I don't breathe right when I feel anxious. Took a xanax last night; couldn't tell any difference, but I might not -- how do you know what might have been? Anyway, as a gustatory experience it's right up there in the Flagyl class. I need to get some big capsules to stick the pill inside -- great suggestion, Jim!

Flagyl pulse over, finally

Submitted by mswillow on Wed, 2006-01-25 02:32

With any luck, I'll soon be able to sleep all night long sans aches. It's looking like I'm already recovering what abilities I'd lost recently. This is really good news :) Got a silly query, tho - I seem to be getting very cold lately. Any thoughts as to why?

My typing is fast returning to what I was doing about two weeks ago. Still working on getting my legs back. I'll be able to check that out after tomorrow, when I return this Goddess-forsaken new $5000 power seat I got yesterday, and get my old seat put back on. That'll let me stand up on my own again, and once that's back, I'll get back to roasting coffee. Vikki will really appreciate that. She's been stellar in helping me cope with all the cr*p that's happened in the last two weeks.

Pleased with my Doctor.

Submitted by paron on Tue, 2006-01-24 18:30

I am; he called me today and asked me to give him a little time to research before he recommended a course of action (following the wierdness of my 2nd dose of Zith.) He said I could decide for myself, take the next dose or not.I know, in a perfect world, he'd have the research all done. Of course, in a perfect world, we wouldn't need Doctors at all, would we?It's great that:

  • he didn't try to snow me; he just went to get some more information
  • he allowed me to be a part of the decision process
  • he doesn't think he has to know everything about everything; but he's willing to find out
  • he's willing to try something out of the mainstream
  • he's actually interested in this whole problem 

It's so nice to find a Doctor that's willing to partner up like that.