katman's blog

2 1/2 years - now this?

For a very long time I have believed that my post-flagyli was a mirror image ot my pulse. This one, number 39, a REALLY good one, made a fibber out of me. Number 38 was abbreviated to 3 days because we had very special company coming from Canada and I sailed right through it. But I think the last two day's targets were saved up and gunned right down at the very beginning of the next pulse. I hereby pull out Jim's old descriptive word - slammed. This pulse took 11 full recovery days during which every step was agony and attacked with real vengeance in addition to my right hip, my left hip and out of absolutely nowhere, my right knee. Suddenly, in a few hours, it vanished. But now my knee bends when I walk!

Too many battles, not enough troops

"Veterans" also take "falls", or the plodding two steps ahead and one back , sometimes a big one.  Last weekend both Richard and I got whatever was sweeping through the populace.  He, being a pediatrician, has been exposed to virtually everything and consequently gets almost nothing.  So, when something gets through his defences, it is a good one, and he had already shared it this time.   We both spent two days and more flat.  He is now up and running while I am kind of shuffling along behind.   I debated putting this  "on paper" but felt it should be noted:  in a matter of hours - about one month per hour - I regressed in my abilities, walking, energy, thinking.   It was as though my body had too many battles going on simultaneously and couldn't cope.  So we coddled ourselves, eating exceptionally well, sleeping lots (fortunately Dr. R. was not on call that weekend) and got better, which probably would have happened in any case.  BUT - my walking came back as fast as it left, reaching the point by Tuesday night that we could begin flagyli (just can't get enough torment).   I still have a really bad cough but this has not descended into my chest, which has always happened since I was a kid, certainly with a cold comparable to this.  However, right on schedule, a day or so after the first flagyl, my right hip and knee  began  a giant ache.  This has been the main focus for the last three pulses, having pretty well cleaned up my neck, right shoulder (not QUITE finished there), my lower back and other various lesser targets.  Amazing, all this. 

Twenty-eight months - a marker

In the 28th month of relentless, daily treatment, I feel that I have earned the right to stand at the vantage point of a second or third tier trailblazer.  I stand as Pancho to Don Quixote or Tonto to the Lone Ranger.  There are a couple of operatic characters nibbling at my sub-conscious but you get the point.  My first piece of  loud vocalization is as Guner said:  "You may get discouraged, but don't give up".  Jim wished for each of us in his discourse for the new year the stubbornness and long, long vision (and I modestly add: courage) it takes to  do this.  I have a very real problem with sharing MY body with all the freeloaders who are doing just that.  I am indignant - I have worked very hard for my place in life and the workplace and when I found that these nasty little devious creatures were stealing my life, I had to fight back.   After spending much too much time in their immediate presence and on their level, I am leaving them behind.

The Final Chapter - it Never Ends

It was the opinion of our esteemed resident pharmacist who made that remark, which I have incorporated, that this is a life sentence.  We can accept that.  We have learned  to adjust, to be grateful for the chence to do the battle, and to sing the praises of  getting better, which were not chapters in the volume before this someday best seller.

My 36th pulse will begin soon.  I think it won't be the emormous investment of courage and sacrifice of time that it was in the first 25 or so.  My battle will be one of defense, of patrolling the perimeter, so to speak, within a year if I am correct.  My question has become my mantra -  why don't all MSi patients give this "a try" for a year?  There is so much to be regained.

Rica 

Hope, Disbelief and Reality

Having finished 26 months of this sometimes hellish protocol, I have been through the months based only on hope.  Then came the months of disbelief and "I couldn't do that before", about  twenty-three of the two together.  I am now in the reality phase and I love it.

My visit to my doctor was a few weeks ago.  For his benefit and to prove once again to myself that all this was indeed true, I insisted on doing the shin test, the stork test, the feet-together-eyes closed-arms outstretched for 30 seconds (we really need to name that because we are going to need it more and more).  Just as "normal" people could do, I did all with an A+.  I still have trouble getting past 5 seconds standing on my "bad foot" alone, but never did I think I could even stand on that foot at one time, since I couldn't stand on both at the same time without a cane or walker. 

The Water Less Murky

Hoping to postpone this pulse for a month, I was enjoying my newly resumed "winter schedule" of many fewer hours in the barn and my measured walks.  Well, my body, particularly my legs, said  "No you don't, not yet!".  Yesterday, I took charcoal for the first time in a couple of months (!) but to no avail.  My legs quietly spoke, though did not clamor as in the past, that I would ignore their demands at my peril, or at least my inconvenience.  So, this morning I began pulse number 34, this time pure flagyli.  I can't say I don't have anything against tinii, but being of sounder mind than body at this time, I need what flagyl gives me - physical recovery. 

Pulses 32 and 33 were:

#32 - 5 full days of tini which by day 5 had me rubber-legged though energetic.  My back felt and sounded  like a bag of wooden balls, well-oiled and rattling around as though their job were to make as much noise as possible.    Not at all unpleasant, this was also a curiously clean feeling.  My walking continued to deteriorate in the next week.

flagyl and tini - the ongoing discussion

This was my 33rd pulse  (29 flagyli and 4 tinii)    On Sept 27 Dr R and I began 5 days of tini, each taking 500 mg 2xd.  Dr R has no observable physical changes so I will limit this to my own.  I was able to work all day every day in preparation for the show where we met Ken and Kelly,   All exhibitors must be on site because that is when the youth show is, so we had time to visit.  The next day we arose from our cots by the doe pens at 7am, showed all day, Richard packed up most of our "stuff" (of which there is an astonishing amount), and I drove us home the 200 miles, arriving about 1 am, when we milked and fed  By way of bragging, we went Junior Grand Champion, Senior Grand Champion,  Best Dairy Herd in Show and Premier Breeder.   As expected, my reaction to tini had me increasingly rubber-legged but full of energy.  Folliowing up on my suspicions of previous tini pulses, I began flagyl 8 days after ending tini with amazing results.  Since the State Fair is this coming week-end I abbreviated the flagyl to 3 days, because on the heels of tini I was afraid I would descend too far down the road of weirdness to return  and be able to walk well by then.

Kryptonite

Recently there was a discussion of NACi and I went back and read the updated page on it.  I doubled my intake of NAC, from 2 to 4 per day, over several days and am thrilled at my reaction!  My energy level has been improving for months, but this was like skipping a floor or two while climbing the stairs (which I can do now, too, without even holding on)   It is not only my energy level, but some reconnections which make no sense yet.   I can feel and control muscle movements that I have not been able to do for literally years.  I am not talking day and night but a very definite giant step toward normality and confidence of ability.  I hope I can persuade Richard to double his this weekend.

All this brings Dr. R into the picture.  He is in the very center of pulse #4.  His bp is literally all over the place - mostly sky-high.  It spiked lately to 160/91!  Before that, for the last few months, it had mostly ranged around 120 - 135/60 - 85.  As needed, he has been back on 1/2 Norvasc - no sense pushing our luck.  His main reaction - nausea - has been replaced by slight zombieness and overall ennui.  Optimist that I am, I am struck once again at the battle this very nasty bug puts up.  If all this well-planned strategy had no effect, I would have to believe that there was no hope for winning.  Now, if only I can talk him into taking more Kryptonite....

An addendum of optimism

This is only an addendum to my blog of 3 days ago.  This is now the 5th day of my 30th pulse.  Everything we have said about being long,  hard, getting worse before we get better, having strength and determination to do what we have to every day just to get to the next day so that we can get to the next day and take more pills,  following a tiresome routine, exercising when we would rather not, eating well when the junk food is so tempting, etc., etc,......is true.  BUT, yesterday I did many goat pedicures, as Joyce calls them, and today, when Dr. R was called away for an emergency c-section (that is, after all, his job) in the middle of milking, I did it.  Then I did my own side of morning jobs, which has shrunk down to a minimum the last few years.   Even as I write this, I am in disbelief that I can do these not easy jobs and still be on flagyli - days 4 and 5!   A few months ago I was still being flattened by the end of day 2 and  staggery after 2 pills. 

Pulse number 30

Yesterday was a REALLY bad day, but today  I have risen to a new level.   This is the 3rd day of my 30th pulse, 3 of tinidazole, but a primary "diet" of 27 of flagyli, which I have learned does not have to be capitalized because it will get you whether of not you pay it obeisance.

After  a seemingly endless series of months (23) of this tortured protocol, I survived yesterday,  even though at times I doubted I would, something ended and I came to the light at the end of a very long  tunnel, and there was no train, but only  sunshine and peace. 

A few months ago I took tini for the first time and after 3 pulses of that my sleep very suddenly became normal, after many months, maybe years, of insomnia, helped by melatonin">i. It may have been coincidental.  I had not needed melatonin for weeks and weeks until night before last when I began this pulse and revisited the land of insomniacs.  There were a bunch of us there.  Today I took my 1st flagyl of the day, 3rd day of my usual 5, and 40 minutes later I was not staggering or even very "weird", as I have always been.  Now, three hours later, fortified by my peanut butter and jelly sandwich on double-fiber whole wheat bread, I am writing this and planning the rest of my day which includes "doing feet", something that never gets finished in a herd of livestock.  The amazing part is that I can think of doing it during a pulse and alone.  It is becoming more and more apparent that there are very sudden shifts (there's that word again) in our progress,  even after 2 years.  Many of us have had them - "Oh, I couldn't do that before!" but I did not expect to have one now.   

Letter to Medical

Since my first attempt at this is floating with the astronauts I will jump right in:   Dr J has watched this mis-adventure from before day 1 and was therefore in a very good position to suggest that he write a letter to either the Med Journal or the board - I really don't remember and it really doesn't matter -  about "us".  He suggested I gather information about "a hundred" of us with MSi about our progress on a scale, length of time,  and maybe meds.  I said "How about 10"?  He said ok.  He suggested not "diluting" it and confining it to MS because that is what he has seen and if we spread it out to other diseasesi it will lose some of its strength.  So anyone who is interested in furthering this attention-getting outcry, please "sign up".

Dr R and the Ghost Blog

If I were the real thing I would not be a ghost writer but this story must be told and will be as accurately as possible.  

Dr R has now been off of 1 of his 3 bp meds for a week and today his bp was 112/59 - pulse 59.   Even in his deepest sleep and 3 meds I bet it was never close to the highest of the past month or more.    The usual was at about 149/89 - last January, before beginning abxi.  Now it has ranged from 144/84 to 136/75 to 116/69 to 107/65 with the lower range being much more usual.  Today both of us are less tired than in the past week.  I asked him if he knew what that meant, and of couse he said no.  I said "You are following the pattern of the rest of us - this is the third week of the cycle and you are sick, too".  Then I stopped him and looking him straight in the eye, said "Even the most skeptical of you guys will have to think something is happening"    So, we leave in 1 week for the Nationals and I think will "do" tinidazole  instead of flagyli.  This will be #3 pulse for Dr R. Doing flagyl at the Nationals  might be kind of like the astronauts going outside the ship without a tether.

Finding surprises

It finally happened.  After 23 flagyli followed by 3 tinidazole and another flagyl pulse without a break there was no change at all that I could tell.  So the 3 weeks went by and I began my next flagyl and the 3rd day my walking was close to where it had been months ago.  I did not know if I had lost precious ground from switching to tini or it was working silently.  I may have been looking in the wrong place:  my sleep is deep and delicious with no melatonin">i  for a month.    I am now in the midst of my 27th flagyl and barely notice it - incredible.    So probably tini was doing behind the scenes work but the physical side was unchanged with no improvement at all for me.  Maybe the neurological  problems will respond to it for some or beginning with tini is gentler.  Certainly flagyl was brutal for me at times but also for me that time seems to be OVER!  My time for shouting that from the tops of tall buildings and trees may be here.  I hope that my walking will  continue to get better but my energy level is pretty good and the Nationals are looming.

Rica's story

My story probably began 50 years ago with a childhood pneumonia.  Several times before high school I missed two weeks of school.  I believe my survival is due to having a father who was a caring doctor and a mother who typified the mother "warrior" who would not let any of her children go.

Forward fifty years to a hot summer day and 450 bales of hay to be unloaded.  The next will have been read before in my blog but is the best way of saying it.  Being indestuctible and in a hurry, I ate and drank nothing all day but had made ice water bottles for the hay crew of two others.  That was Tuesday.  By Friday I was dim and fading.  My husband took me to the hospital where I was found to be very dehydrated, blood pressure 70/50 with fire ant bites on my right foot, later to be my bad leg.  Soon I was septic and my husband later said our National Champion goat died instead of me.  After five days I came home to recuperate and developed a rash on my right rib cage.  You have shingles said Dr R. (husband)  I took Acyclovir, but was never the same, ending with an ever-increasing limp and numb right side and thinning hair which was already too thin. 

Tini > flagyl > roto-rooter

With this, my 26th pulse, which went directly from tinii into flagyli, there is dynamite afoot.  Yesterday was the 2nd day which is usually building up blood levels, but this time was straight to the point.  My walking is back to almost a year ago, my right arm is less coordinated, the numbness has returned to my right ribcage.   Maybe it is because I am MUCH more mentally alert and aware than a year ago, having emerged from "foggis extremis" and maybe delusional, but I could swear that I could FEEL the flagyl going after "bugs" in my right leg (bad one) and my neck and right shoulder, and all the worst past parts of my body.  In spite of my usual "tiny" (don't laugh, Sarah) melatonin">i, I woke up at 5 am, though 6 is my usual wake-up.  It is as though tini primed me and flagyl came along and said "Get out of the way and I'll show you how it's done".  I am somewhat handicapped (ha!) in that I can't remember much of the worst time but my feeling is that the biggest sling-shot of temporary disability eventually results in the biggest recovery.  If you, dear reader, are not board/bored stiff (not funny) tune in in 2 weeks and we will all know how much recovery there was from the tini + flagyl pulse.  Of course, to use the standard medical phrase - this may have happened anyway.
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