Here I am, on the road, having followed CAPⁱ for almost 4 years.  I thought 4 years ago that I'd be almost done by now but I've never seen any improvement, I've only gotten consistently worse, day after day after day.

Four years ago I was at an EDSSⁱ of 4.5.  Today, I barely made it in using a walker and once I got here, fell down, needed help to get up and sit, and use a wheelchair while at work.  I'm flirting with losing the ability to walk at all, even assisted by a walker.

So, done with moaning for now, it serves no purpose, nothing will ever change from it.

There have been a lot of discussions recently about knowing when to go intermittent vs. full time antibiotics and when to stop full time abxⁱ.  It got me to thinking about something that was mentioned over the course of the discussion, which is simply how do we know whether we've resolved the infection or not, and whether we're just suffering from nerve damage and will never, ever get back what we've lost.  Not pleasant thoughts to consider but it's something that many of us will have to think about.

I have skipped pulse 41 in preference of using caffeine twice a day, paired with the morning and evening doses of antibioticsⁱ.  However, I have been giving thought to a suggestion given to me by Rica.  The suggestion is to begin a daily dose of Flagylⁱ and not worry about pulsing.  So I've tentatively decided to try that.

Yesterday evening was my first dose.  I took, 500mg of Flagyl and I was surprised.  It really didn't affect me much that I noticed--no more then the other antibiotics I was taking at the time.  The effect was indistinguishable.

Something else I notice was that I felt better after taking it.  My walking improved, though it has a long way to go to becoming "normal".

I'm two days past when I should have started pulse 41.  I didn't start it because a) who wants to pulse, I don't, and b) is the alternative using caffeine doing the same thing, effectively?  I don't know but I'm trying to find out.

I live in an area of the country (United States) that's been getting hit hard with snow this year.  I live in a condominium which was a choice I made since it's almost entirely 1 level and they take care of snow removal, trash, and water bills, at a cost.

Anyway, the front entrance to my building was snowed under about a week ago.  I think there was a 3 foot drift in front of the step (2) to the porch to go into the building.  The porch is 8 feet wide and they brought a snow blower in and cleared a path right in the middle which is just shoulder wide, barely wide enough for me with the walker.

Just saw my doctor today.  I asked for a LDNⁱ prescription. He wrote it out for me. 4mg/day.   I was too late to get it into a compounding pharmacy. I'll have to get it filled next week...in theory.   I can barely stand or walk.

He also told me about inosine and uric acid studies done on people with  M.S.  I ordered 3 bottles today.

I gave much thought about what to write this month but didn't come up with anything special.  I actually just finished pulse 40 on Wednesday.  I usually write these blog entries in the first day or two of the pulse but just wasn't motivated this time to do it.

I continue with the abxⁱ, daily, as I have been for 4 years in February.  Still nothing positive or significant since maybe six months in.  I have been noticing why some of my symptoms get worse and have come up with a thesis on why.  I've tested it once or twice and it seems to be fairly consistent.  What is it?  Glad you asked.

Okay, two more things this week.  First, I had an MRV performed at my local hospital.  The priocedure is similar to an MRI except instead of taking pictures of your brain and spinal cord, they're taking pictures of your veins and arteries.  I've got a CD with images of everything except the contrast images. 

Not sure where those are.  I was on an IV and they injected the contrast stuff (gandolinium?) at the end or the process.  Most of the pictures were without contrast.

I never wanted this day to ever come to pass, but I have to get ready because I know that before long, I'm going to be in a panic because I didn't get ready in time.  Maybe it's already too late, I don't know, but I'm at least trying to find out now.  So what am I talking about?  Well, let me tell you...

Okay, someone who is apparently very knowledgable approached me recently with the view that my lack of progress and slow decline over these last almost 4 years on the protocol, has been due to true autoimmunityⁱ.  I don't know how to know what to do or how to test the thesis other than to take the advice that I've received.  What is that advice?  It is this...

Discontinue all antibioticsⁱ except for 1, Rifampin.  Then, begin taking 1 caffeine pill of 200mg/day, split in half with half in the morning and the other in the evening.

I did pulse 39 last week and it took almost as much out of me as pulse 26 when had to take a week off from work.  This time, I just worked from home yesterday but I did work last week during the pulse and after on Thursday and Friday.  I think I've worked out what is happening.

Prior to getting very far into the CAPⁱ and for the first 2 years of it, I was actively going to the gym.  12 hours each week or so, 5 days, Sunday - Thursday.  I would give myself the weekend off just to relax.  Now, I'd be lucky to do one tenth of what I used to do in the gym.

I haven't yet started pulse 38.  That's supposed to be tomorrow morning.  But as I type this, it's become woefully apparent that this hasn't worked for me.  I've only gotten worse and worse and worse, to the point where I'm almost needing a wheelchair for mobility.  I used one this week for 2 days after having a really bad day on Tuesday and leaving work.  I'm back up on my feet with the use of the walker which is becoming less and less of a safe aid then it was.  I've discovered how easy it can still be to fall down, even with the walker there to stabilize things.  I'm ever on the cusp on going to a full EDSSⁱ of 7.

I have no other choice but to stay the course.  There aren't many alternatives open to me.

Okay, I just recieved a copy of the T3 test results from Quest.  The rT3 results aren't in yet, they're "pending".

The results don't bear out  the symptoms, just so you know.  Much like the T4 results (found at the following link), it's in the reference range.  http://www.cpnhelp.org/hormone_levels_test_resul

Here are the T3 results from Quest Diagnostics

T3, FREE    In Range  290                   Reference Range 230-420 pg/dL

So, I have no recourse at this point.  About the only thing I know of doing is to buy meds on the Internet and self treat, picking and choosing, and with luck, finding the right one before I'm either hospitalized or miraculously recover.

I finished the pulse on Monday.  It was harder then pulses in the past, mainly because of the addition of pain into the mix.  I'm cautiously optimistic that it's a good sign that I have pain.  My speculation is that apoptosisⁱ has finally occurred en masse, which is where the pain in coming from.  This is why I compared the pain to the pain one would have from excercising too hard.  Well, that's a rough comparison but a little inadequate to descirbe it.  I would have to say, it's somewhat worse then that.

Here I am, on day 3 of pulse 37.  Unlike the last pulse, So far I've been going full blast with this one, 3 doses of flagylⁱ per day, with the exception of today and tomorrow.  Today only because I got thrown off track by something (phone calls) and tomorrow because of the holiday, though that's not sure yet.

I did notice something different this time that's unlike other pulses I've had.  Pain.  Not sever pain but definitely uncomfortable and troublesome.