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Update -- on downwind for first pulse.

I have been on Zithi and Doxyi for three weeks, and I should be starting Flagyli in about two weeks. So far:

  • I notice a gradual improvement in all symptoms -- I still have days where I am "tender" (any exertion will have me panting for hours), and the brain fog still comes and goes. Yesterday, though, I did mentally difficult work for the entire workday, and no brain fog at all! Wobbliness is better overall, as well.
  • My BP is down significantly --  readings are near normal, so far nothing over 84 diastolic.
  • My weight is down slightly -- about 5%, but it was effortless, absolutely no intent of mine was involved.
  • Unexpected bonus -- the skin tags around my eyes and neck are going away.

No really negative side effects so far, beyond that expected from die-off. I am nearly 100% compliant with the protocol, diet and supplementsi included. The hardest part is that necessary 4 hour window for the charcoal to work on porphyrins. I don't often manage an evening dose. Just one between breakast and lunch, and another between lunch and dinner.

Cpn, my daughter and I

Saturday, 17th March 2006

What does a mother do when she sees her vibrant, beautiful daughter turn into a bundle of grey skin and thin bones?   At first panic, depression and brain death took over, but after a little while some kind of desperate rationality drove me to the fount of all knowledge (the internet) to do a bit of research.

I had noticed that during the slow progression of this latest MSi relapse, the two courses of antibiotics that Ella took for a bladder infection had temporarily stabilised her condition.   This lead me to wonder whether there was any connection between  infections and  MS.  The cyclic nature of the relapses that she had suffered, together with the often apparent lack of identifiable cause had led me to wonder whether there was some resident 'parasite' at work.

Ice cubes and other stuff

Today is the first day post flagyl pulse 5/6. It's cheatin to call that first one, which was one dose, a "pulse" but it feels better to acknowledge it.

I am weak today and my right leg is definitely dragging much more than usual. I fell asleep last night to tinnitis, and thought 'oh I should get up and take vit c and water" as others have noted this as endotoxini, but I was too tired and did not want to be awake all night going to the restroom. It reminded me that it is easy to slide on the fluids (I should have drunk more earlier obviously)and that perhaps keeping a gallon of water out on the coutertop or something of that nature is a better reminder.
About two weeks ago I also discovered that an ice cube tray makes a great pill holder. It has 16 divided sections for all the ice cubes. If you use 14 of them, two for each day, you can fill the tray with your supplementsi<

My Evil Twin

Having forgotten my melatonin">i last night but sleeping reasonably well anyway, I still woke up at 5 am - a good time to wake up.  We had decided to build a pergola over our koi pond which was destroyed when Floyd the hurricane came through a few years ago.  We rebuilt the pond but the sun is brutal now with no old pine trees to shade it.  We lost 11 in the hurricane.  The point is that I spent an interesting hour being able to visualize the construction of the pergola.  I had already planned most but saw it down to very small details as I have always been able to do.  Not yet the very tiniest but almost. 

Starting in 1977 we gutted and rebuilt a 100 year old house.  I designed and we built 4 barns and I did the plumbing and all the wiring, loving every minute.   Dr R says he is good at pulling nails and carrying lumber but has less than zero mechanical ability (true).   We will hire someone to build this but seeing how to do it is a huge step forward mentally, showing to me several welcome things:  much greater mental acuity in memory, greater depth of thinking, and more logic. 

bed sheets

Hi.  This is weird but I've noticed that when I change my sheets I have a much better night's sleep that night.  It is pretty extreme.  When I am into night, say , 4 I do not sleep well. 

 

I think maybe endotoxinsi are coming out of my skin and adhering to the sheets and making me "irritated" when I touch them. 

 

I know this sounds crazy, but was wondering has anyone else noticed this? 

 

And by the way I just love to change sheets!ugh

Also I took my 2nd tinii yesterday and within 45 minutes I had a watery bowel movement.  This happen to anyone else?  Oh to know the initmate details of people you don't know.

 

kc

Pulse 3 gloom

Flagyli pulse 3 finished 4 days ago - full 5 days of 3x 400mg. Don't have a clue on what to predict either physically or emotionally, my notion of understanding a pattern seems far off. Crawling into a cave somewhere is an attractive option - stay there until I'm "better". I feel emotionally overwhelmed at times - and this is making me withdrawn and less communicative with those close; but it is being suggested (by those close) that my overall mental condition due to the MS is behind this. With the onset of MS at the age 44 everything seems thrown into the pot - not only is there the shock and concern about the future with regard health/work/life, but I think it has forced a 2nd mid-life crisis where the "what have I achieved" question comes up again - and I mean in all aspects of life/career/family.

Another Flagyl pulse, OH MY.

I did another Flagyli yesterday. 500mg in the am. OH MY GOSH. I had such a bad niight. Esculated pain in all my usual places. I groaned and groaned. I figured I had taken my max dose of pain meds and all recommended toxin reducers and I was still in misery so I got out of bed and read with hot tea. This takes my mind off the pain. When I am lying in bed trying to go to sleep all I feel is my body on fire. Finally felt like I couldn't hold my head up and fell into bed exhausted at 4am. This has become quite a pattern for me.

Today I just took 1/2 pill. I will take the other 1/2 tonight. 500 mg total. Last two pulses I only lasted 3 days. I sure wish I could tolerate this treatment better. At this rate I will be on this protocal for 10 years.

I am over due again on this pulse so it was spaced 3 weeks since the last pulse.

did another tini pill, not pulse

I took another tinidazole pill on Sunday.  I was scared to take two because of my last pulse.  I am doing ok.  I got the increased energy and now 2 days later have none.  I am going to take another one today.

 

I have always done poorly in March and August.  March being the worst.  I wonder if this is cpni replicating time for me. 

 

I dont want to eat and feel like I used to when I was getting off of my 5 gram steroid infusion.  Very shaky and cold. 

 

I always feel guitly because my 6 year old is now in school all day and my husband is at work.  I can barely pick up the house and do dinner.  But I have to have faith.

 

I know this is it.

 

kc

My 5th pulse or is it 6?

I am lost. This pulse is as yucky as ever. 5 if you do not count one pill one day pulse one, 6 if you do. I take 1500 a day. I feel weepy of course and my head aches as usual, i wobble into everything and my leg drags the floor, I don't even bother to try t pick it up. This time I bought a whole bunch of watery treat ahead of time like gatorade and stuff, and I am having them. It's sort of fun. next I get hot and sour soup-still on my give me hot food bent. Unfortunately tomorrow I have a big work day. I may take only 1000 so I can feel better. As I look at this blog I think to myself what's the point? why am I doing this? I'm not better, I feel crappy and terribly ill. But I read my old blogs and discovered another self, a healing self, someoen who seems so different from the me I know today i can hardly believe it. Yet I know that in a few days I'll be happy again and my poor hand which has given up during this tiny blog post will function again

Pulse 5 is history.

Yipee, Flagyli pulse 5 is officially over. It wasn't too bad this time, between a lower dose (2x500 gm vs 3x400 gm) of Flagyl and a large pile of supplementsi. Oh, one new, and not unexpected, result - looks like I did a number on my intestinal flora. Thankfully, I already have the supplementsi to fix that, and have started taking them. I'm also back on 2 NACi/day now that the pulse is done.

Lately I'm noticing better leg movement, transferring to and from my chair is quicker and easier, some improvement in my control of my left hand while eating and typing, and much better ability to insert and remove my contact lenses. My leg spasms have decreased, both in frequency and duration. I'm continuing my dexterity exercises and knee bends / tendon stretching. Next pulse will start on either the 20th or the 27th, depending on how I feel.

KK2's Protocol Update

My spastic hamstring is beginning to act up again, and my 2nd Flagyli pulse is coming up in two days.  I am quite tempted to begin early.  However, I continue to be confused by the way that I "need" Flagyl to feel better--that is, it immediately causes hamstring pain/tension to dissipate. 

Question for everyone:  Could my situation reflect an induced yeast infection via the doxyi/azith therapy, which is relieved by Flagyl pulsing?  Of course the problem is only in my bad leg. 

DW?  Marie? Anyone want to take a whack at this one?

Changing my Protocol

After almost 18 months of 2xd Rifampin, Doxycycline,  8mo Azith 3xweek, and 20 pulses of Flagyli, 2xd NACi, I am stopping Rifampin and will, in a couple of hours, begin taking my Doxy 1x day.  This is a huge change in my life because it has been VERY regimented around this very tight schedule so we are going to celebrate my new-found freedom with a KFC Chicken Pot Pie.  All I can say about those is yum, yum.  I will ignore the sodium (2000 Mg) and the calories (750) and the saturated fat (lots) but NO trans-fat!    It will be good- that is guaranteed.  

To serious matters: I have diligently worked on the adhesions in my right arm for months.  The adhesions are mostly gone and the strength is increasing but I will have what I can only term "MSi deficits" for an indeterminate time which  may be permanent.  Obviously my mind is still becoming more observant - I say that because I thought to lean over, holding on, and pick up to the rear my legs in turn.  The right (my bad leg) was a miserable failure in comparison to my left, but considering that last June I literally could not get it off the floor AT ALL and now can lift if 1/2 way behind me I guess that denotes a good bit of improvement.   Why did I not think of this till now?   But I do find  unrealized failures in my right arm that are only now emerging to awareness.   For the first 20 + years of my life playing piano shared with my horse the most hours of my time.  I have attempted piano several times lately and have found the most deficiencies in the 3rd and 4th fingers of my right hand, not even counting my forearm which doesn't necessarily go where I tell it to.  This wasn't even seen when my remaining mental capacity was consumed with how to get from here to there and remembering what I wanted to do when I got there and having the energy to do it.   So we continue gathering evidence individually and together. 

Pulse One

Almost forgot how to use the site--been away for awhile. We moved halfway across the country and are far from settled, but we decided to press on and do a short trial pulse one.

Jim has been feeling pretty well and was finally tolerating the doxyi/zithi combo much easier. Even through all of the chaos, he was anxious to give the flagyli a go.

The zithromax has caused Jim a fair amount of trouble. He would always have distinct reactions on Zith days. Like clock work, old symptoms would always return--even ones we forgot about, swallowing issues that in 1999 were written off by an ENT as allergies is one example. The most striking continuing zith reaction has been very short bouts of what we call "eye" fatigue where Jim's eyes would almost be forced to close. These would pass rather quickly.

Timing is everything

I'm being screwed by the Section 8 Housing people. Again. (I live in a rent-subsidized apartment. They pay part of my rent.) It's very likely that we'll be forced in June to move to a 1-bedroom apartment. I can't pack, can't look for a new place, can't carry things and can't afford to hire help, pay move-in costs and still pay my med bills. Two steps forward, 24 parsecs back.

I'm on day 3 of pulse 5. The Dementor is really doing a number on me. All I want to do is quit fighting and die, but I can't even hold the knife if I could reach it. I'm stuck here.

Got more supplementsi today. Yay. Huzzah. I will take them tonight.

Roller Coaster

(On DW protocol from Nov05 for MSi)

Feel I'm on a roller coaster. Just started 3rd Flagyli pulse. Took a longer break from last and it took about 16 days before I picked up from it. After a 4 week break and preparing (mentally!) for 3rd pulse felt return of old symptoms and got concerned about relapsing. Started pulse yesterday with 2x 400mg and have had 2x 400mg today (take 3x 400mg for 5 days) - surge of syptoms and headache now just 24 hours in. I don't know what's going on, and feeling a bit depressed over it all. What pattern do you guys experience? Does Flagyl affect you quickly or are you left with a 10 day post-pulse of feeling rotten? Both?? I thought I'd start to understand the pattern with the 3rd pulse - but it's different this time. R.

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