OK, supplements then. Diet as well.

My doctor's completed his research for the time being. Conclusions: I am to follow the Stratton Protocol (V.7), as far as diet/supplementsi, skip Wed's Zithi, 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 Flagyli class. I need to get some big capsules to stick the pill inside -- great suggestion, Jim!

Flagyl pulse over, finally

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.

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 Zithi.) 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.

distance running with CFS

I just ran 3 miles at the track in a new best, 21:03. Pretty good for a guy who used to be able to sit up in a chair for a few hours max. And this much improvement after only 2 weeks of antimicrobials! Just kidding, 15 months of em. I've eaten a quarter-kilogram of tinidazole since May.

For comparison, 8 years ago in high school, when I trained avidly for competition, before illness, I ran around 18:45.

I'll put up my whole illness and treatment history later.

2nd dose of azithromycin -- what's going on?

I have taken two doses of azithromycin, one on Fri. and one today (Mon.)

I am so lightheaded. First one of my ears feels hot, then the other one does. I am cold all over. All I ate for dinner was three Shredded Wheats and an orange and a grapefruit. (In Ron-food terms, this is about = to a slice of dry toast and half a cup of weak tea in people-food. I've always had an excellent appetite.)

 Is this herxing? Should I feel so odd? Am I not supposed to take a couple of handfuls of pills every couple hours on the Stratton protocol?


Raise the Flag (yl)

This is a short blog entry about being under the influence of Flagyli.  The first 2 days when I measured my 1 mile run/walk it  was a thing of beauty!  My time was 4 minutes for each lap of 700 feet- today it was more than 5 for the 1st lap and I was VERY tired after 3 laps and 17 minutes and stopped.  I ran not 1 step!  It was only 8 hours after my 1st dose and 1 1/2 after my 2nd.  I have to write this now because at this rate I will forget how to write by tomorrow!!  See you later......


A Quicky

I didn't think I would update this treatment blog so quickly--but I am excited to be able to! On Jan. 6th Jim started the doxyi and had minor reactions (quick fatigue, sinuses more congested-really minor). He also noticed strange effects from upping his NACi-Joint pain, movement in sinuses, etc.

By the end of his first two weeks he said "I feel pretty good". That's a big stretch for my worst case scenerio, don't count your chickens until they're hatched kind a guy. On Jan 20th he took one zithro-Wow.

He had reactions that I honestly did not expect. Brain fog, he cried for no reason, he felt as if someone was trying to shut his eye lids. He had stabbing like eye pain in both eyes, severe neck pain--felt like heck in general. Gluttens for punishment, on Sunday, Jan.22 he took his second zithro. Even worse reaction---all the same symptoms and more. Today he woke with achiness in his shoulders,neck,chest and elbow and knees. These are complaints from someone who does not know specifically what reactions to expext (I've not shared all of the knowledge that you all have shared with me).


My hand is weak and clumsy thing today so this will be short. It's been 10 days of no spasticity meds for me. Last night I slept better than I can remember having slept with no spasms at all. None. Mind you, I have had some kind of spasticity med for most of my 15 years of MSi. Starting in 99 I have taken requip at bedtime and for the last 2 years I have tried to get off the stuff but the spasms were so bad I've not been able to. I CAN'T TELL YOU HOW SIGNIFICANT IT IS TO NOT NEED THIS. IT IS A BIG BIG DEAL.
I am doing this for the newbies so they can see someone can have something after 4 months of not being sure. I also wanted to update so people can see I am still doing well, it was not a flash in the pan and a fluke of a day or two that went away and I quietly disappeared not saying about how I went back on the med. Nope. I do not need it and I feel better now two weeks after finishing flagyl 2 than I have in a long time.

The INH "Pink's"

Since I posted on the first couple days of herx from INHi, I have to say that today, only 6 days of 1/2 tablet, I had more energy and less brain fog than I've had for a while! I'm hesitant to say too much, since I know these spurts of energy can be short lived, but I actually found myself singing in the shower, with energy after shopping, eagerly reading and posting on the site here, having an intelligent conversation with my son. It's da bomb!

Stay tuned, I may crash tomorrow, but this day was sweet! 


I ended up on the floor twice in the last 3 days, because my legs gave out quickly. Had to have the paramedics pick me up and put me back in my chair. Being disabled really sucks.

I've been seeing some backsliding on my recovery, not just in my legs but my hand too, so I'm back on the Flagyli again. Some good news is that the azithromycin I'll be using to replace the roxithromycin is now available as a generic, further cutting my med bills. That'll help quite a bit.

My power chair, Elspeth, is in the shop, getting a cool new seat. I'll get her back on Monday - till then, I'm driving a really cheesy loaner chair. It's nasty, uncomfortable, jerky, and has VERY limited battery capacity. I want Elspeth back.

The INH Blues

I haven't posted for a bit, and had a report all prepared of how I felt I'd turned a corner in the last couple months. Tonight, though, I'm "singin' the INHi blues..." having just hit day 3 of adding a half of a 300mg tab each day. I'm amazed that after a year on the protocol and 7 or 8 tinidazole pulses, I have such big inflammatory reactions to adding this more potent med. But it also makes it clear that there are tissues which have not been reached as well by my continuing doxyi/zithi/naci/tini combo, hence why my progress has been gradual, although steady.

 Some good news too. I just got back from a business trip overseas which I had also done in September '05. I clearly was doing better now than in September: less fatigue, less brain fog, more resiliency from travel, quicker adjustment to jet lag and time change. This prior to starting the INH, so I know it was the accumulated result of the doxy/zith/nac/tini combo.

Starting Stratton Protocol

I am going to pick up Azithromycin, which I am to take 3x week for the next month. If the results are in any way remarkable, I'll remark about them.

I hope this works -- even a high titre for IgGi doesn't prove I have a chronic CPni infection, and I'd love to know. Even better, I'd like to get better.


KK2's Protocol Update

Just a quick update with a bit of a nuisance.  It is nearly 3 mos. since beginning the Wheldon protocol[in which the msi sxi have shown steady improvement].  Nothing different in my meds or supplementsi, yet I have noticed a striking increase in the spasticity of only my left[the weak one] leg--actually it is a weird buzzing in my left great toe coupled with a grabbing sort of spasm in the left leg.

My left quads and hamstrings are unusually sensitive/touchy.  Kind of like it would feel good to stretch them, but when I do they recoil in spasm.  Nothing more than a nuisance I suppose, but it is quite annoying.


Anyone else experience this? 



Oh, and I have not even done a Tinidazole pulse yet!  Surprised

last night

The symptoms always hit on the 4th day of increasing my abxi. I had disturbed sleep and night sweat with increased symptoms. I found a new juice v8 splash which is very good . It is high in c e and a. I drink a huge glass with extra c at 2 am and woke up not too bad. I am on minocin everyday now with 4 days to up the last 100 and will go to my gp for blood pcri testing to get a starting point before zithromax .I hope to add it by the end of the month.



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