Here today on October 6 and I look ahead to October 18 when I will be embarking on pulse 27.  That sounds so calm when I'm anything but calm about it.  Pulse 26 took me from being ambulatory to having to use a wheelchair and/or walker.  It wasn't something I was expecting to happen, it was pulse 26.  I had pulsed for over 2 years and yes, I had a little bit of heat and heaviness in my legs but by and large was able to get around and be fully functional through pulses.  Pulse 26 was far different.

I just thought I would jot down something while I sit in my home this afternoon for lack of other ways to spend the time.  I'm here alone, wishing I could get out, wishing I could spend time with friends but lacking the ability to do that at the moment.  Many of us travel a lonely path going through this process and I'm no exception to that at all.

Today, I spend the  tenth day since pulse 26 still unable to do the basic things that I still took for granted before pulse 26.  Well, maybe I knew not to take them for granted but I didn't dwell on how fortunate I was at the time.  It's easy to overlook what you have before you don't have it.

I thought I would jot down some things about this pulse and where I am on the second day after the pulse; how I'm doing.  Quite frankly, this is the worst I've ever been on the CAPi or  in general.  It might be a good thing because I've gotten through the initial phase of things; however, only time will tell.

This has been my second pulse on the higher dose of Flagyli:  1500 mg / day.  It hit me like a ton of bricks.  The first two days I noticed more difficulty walking after taking it, more heaviness.  On the morning of day three, it was a little worse and by lunch time I was dragging both feet and barely able to walk 10 feet unaided by holding on to a wall or a railing, or something.

On the eve of pulse 26, I can't help but reflect on some things that people here as well as in my day-to-day life have suggested to me.  The suggestions have been good, considerate ones, and I recognize that; however, I have decided not to take the suggestions, at least not yet.

What suggestions am I referring to?  I'm referring to the suggestion that I get a cane or a walker.  I refuse, outright, until I have no other choice.  And despite the hell I put myself through, I have a choice, and I choose to fight.

I was reflecting on my morning and decided to put something down.  This is a typical  morning in terms of what can and often happens to me.  The CAPi I've been following for 25 months has impacted it somewhat, albeit in subtle ways. 

Most recently, I have thought that I _may_ have greater heat tolerance then last year (last summer) but it's hard to tell when the ambient temperature jumps so much, so fast.  If my imagining are correct, I've inched up to about 90 degrees F before the heat really starts to slow me down and impact my mobility.  Last year, it was 87 degrees F.  The year before, 81 degrees F.  I'm not sure about it though, just seem to be tolerating the heat a little better.

Day 3 of pulse 25 is well underway.  Over the weekend, I had two days of taking the higher dose of Metronidazolei and it continues today with 3 x 500mg, this time in pill form as opposed to the capsule form.  I can now say from first hand experience, there is a major difference between taking the capsule form and taking the pill form.  The pill form is NASTY.  Horrid, horrid taste!

I've started attempting to toss the pill back in my mouth to my throat in hopes of missing my tongue entirely and washing the bugger down.  Uggh!!  I had it easy with the capsule form!  Unfortunately, when my doc increased my dosage, he also increased the amount of pill prescribed so that I get a 4  month supply at a time.  Now, all in pill form....yuck!

This post is to record the minor changes in my protocol that I'll be enacting, beginning with pulse 25 which is a little over a week from now.  I saw my doctor on June 30 and discussed things.  He is supportive of everything I'm doing despite the fact that I'm the only patient he has treated like this, using any CAPi version.  He's as dumbfounded as I am at the lack of neurology to recognize the research and proof of the involvement of CPni with neurological diseasesi.

In any case, he agreed with me that using INHi daily, continuously, along with every thing else I'm taking, is hitting things pretty hard.  He agreed with me that if I want to continue to use it, maybe moderation is the better course of action, pulsing it with Metronidazolei, if at all. 

Day 2 of pulse 24.  Nothing remarkable to report, the pulse is going much the same as most of  my prior pulses have gone.  I have a bit of heaviness and burning in my legs but otherwise feel about the same as I did before the pulse.  This being the second day, that could easily change come Monday when the work week begins again, as does my work schedule.

I stopped INHi about three weeks ago and have been having less inflammationi.  What I had before made it really difficult to function on some days, I just wasn't able to get around the way I was before INH and since getting off of it.  I think the combination of abxi was just too much.  I even did two pulses while on continuous INH.  Better to scale back a bit.

I've read about a supplement that others here have taken in the past.  I decided to give it a try, thinking that if nothing else, it will help clean up endotoxini in my system.

The supplement is GliSODin.  From what I've read, it seams to be an antioxidanti enhancer, possibly in the way Alpha Lipoic Acid seems to be.  I'm unsure about how beneficial it will be but I decided it's worth trying.

I'm interested in any experience you may have with it, thanks.you may have with it, thanks.

I had been thinking about things and realized I had some unresolved, unanswered questions that I hadn't asked. I could post this in the forums but there are several questions and it makes sense that I blog about it since they may not all be of interest to everyone.

Okay, now that the prefacing is over, my first question is about timing of things and how it affects me.  More specifically, each morning I wake up and take a few things before I do anything else.  I have what seems like a porphyric reaction to it although I don't know or understand why I would, it isn't food.

One of those days already.  I got up, very unsteady but thought it would improve as I woke up.  Nope, it didn't.  I kept going anway.  I knew that I best hold onto things if I'm going to get around and so I did, as much as possible.

Well, that had limited success as you might imagine.  I have a small set of stairs walking out of the building where I live, concrete stairs.  I managed to trip and fall from the top to the bottom in one fell swoop, ending the event by cracking my skull on the concrete ground at the bottom.  Fortunately, it wasn't too bad as I was trying to minimize the fall as it went.  No blood that I can feel or see, so I may get out of it with just a bump.

Okay, I finished my 23rd pulse on Friday and then just did the regular daily medications over the weekend.  Perhaps I should say regular weekend medications as my last dose of azithromycin was Friday.  In any case, I thought I would recap some things I noticed during the pulse and things I've noticed over the weekend.

What I've noticed is not any improvements in my symptoms...unless you consider having more pain and discomfort an improvement.  Pain...that's a relative term.  It's more like inflamation and soreness then pain per se.  Hard to describe how it feels but I think many of you know what I'm referring to - a hotness in one's extremities (my legs mostly). 

Yes, it has been seven months since I began taking Rifampin although it seems more like eight.  It's entirely possible my count is off, it's not terribly important that it would be off by one.  In any case, I'm now on the most intensive CAPi I've ever been on.  I'm now taking Doxyi, Azi, INHi, Flagyli, and Rifampin, along with NACi all at the same time this week.  I started my 23rd pulse on Sunday night, a day and a half later then I generally try to schedule the start day/time (Saturday mornings).

I'm into my fourth day of a 5 day pulse. I forget what count this is, maybe the 22nd or 23rd? I know that April signified my official 2 year anniversary since starting the CAPi with NACi and Doxyi, way back when.  And here I still am, no better then when I began and sometimes worse.

Now, that being said, I haven't given up on anything.  I think that maybe I'm just starting to really figure things out about the CAP and how it can work for me.  What I mean by that is this...

Up until recently, I've been going through the motions, being very diligent to take NAC and abxi on a set schedule.  I still am; however, now I think I've found something in myself that I wasn't aware of before, a reaction I wasn't noticing.

I thought I would post something about where things are at the moment. I began taking INHi over two weeks ago. I haven't noticed anything dramatic but there are differences, though subtle. I don't know if it's my imagination or a genuine difference, but things are a little different. I stress a little.  It might just be that I want things to be different so much that I'm making in different in my head.