Alpha Lipoic Acid

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Antioxidant supplement.

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  His main reaction - nausea - has been replaced by slight zombieness and overall ennui.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.

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 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.

Like water for flagyl

With 26 pulses behind me, I can climb on a soapbox without any help at all.  I have done 23 flagyli (not the 22 I thought) -   I finished tinii at night and began flagyl the next morning -   and 3 tini pulses.   I think I know where I was for the "lost" 8 months of my life last year - my brain was hiding under a rock.  My right rib cage has become numb again after several months of near normalcy and my walking has regressed 3 or 4 months but the brain fog is less than I ever had on previous flagyl.  That is not to say that it is not there, it is more that the fog is lifting.  The other side is that I think tini does next to nothing for me.   My walking did not improve at all and I made NO other gains that either Dr R or I could see.  I may stay with flagyl till the mist is burned off.

Can we mix tini and flagyl?

As of last Monday,  no one here has had time to sit down.  We clipped the 16 goats who went to the show, "did" their 64 feet, and all the emormous amount of work just to get to the show.  Then the REAL work began.  Four days of 18 hours of running up and down the 300' barn, showing all day Saturday and Sunday, finding time for some food so you can work some more, getting 6 hours of sleep (no melatonin - didn't need it) if you are lucky.  What I thought was instant coffee was not so we heated water with our goat water heater, put the coffee in, and strained it through one of our little blue surgical towels.  They make very good coffee filters.  Pill taking must go on.  The coffee was very good and got our hearts started!  Our junior doe was Grand Champion in 2 of the 3 shows and our now 3 year old went Grand Champion for the third time (making her permanent) and Best  Udder in Show, making us happy.  There can be real life after MSi.  Then the mad repacking of things, the goats, and us for the three hour drive home, evening chores and milking  and crash for some sleep.   As Richard says, we are famous again for a while. 

Tini as springtime

Yesterday morning I took the last (10th 500 mg pill) of my second tinii pulse,  This followed 22 pulses of flagyli over a period of 15 months.  I think I must be getting better.  (Understatement)  Whereas the flagyl from the very first pill put me 40 minutes later in a very long tunnel full of grey mist, low diffuse light, no sensory perception, flat emotions that lasted for days, tini was like a spring day with flowers and Bambi (or our own Lyric, Reprise, Raya, Radiance. Erin and on and on)  I will never know (thank whomever) whether tini would have affected me less than flagyl but we put in a mammoth weekend of hard physical work and I was "normally" tired and slept very well with no melatonin. This is amazing, incredible, on and on and on.  I'm not well but I'm sure better than a year or a year and a half ago.  So I walk with a limp. OK - nobody's perfect.

Teeny tiny tini

Do it NOW!  Tinii must know what it is doing, but it does it more unobtrusively than flagyli.  I was skeptical at the beginning - on this protocol it is usually: pay dearly for your wares, and you get what you pay for.  Well, I sailed through the first tini pulse (relative to flagyl, that is - let us keep some perspective here), and  fifteen days after beginning the pulse (#23) my ever-vigilant legs said it was time for the next one so I did.  Why is this and how does this work?  Has this seemingly low dose penetrated more deeply with much less discomfort (temporary senility) and offered up more bugs more efficiently?  I don't know, but I will certainly do several of these tiny tini pulses and look hard at the somewhat different route of recovery before doing flagyl again.  Last night for a "loading dose" of my pulse #24,  I took a 1000 mg pill and broke another thereby taking about 1300mg total.  This am was a 1000 mg pill.  My physical deficits have not improved dramatically with this 23rd pulse as they do sometimes but my mind has amazingly recovered some memory that I didn't even know was missing! 

Walking around breathing

Eight of ten tinii downed.  This is my first tinidazole and I am a fervent convert.   With flagyli my dose was usually 375 mg 3xd 5d, while so far with tini I have taken only 500 mg 2xd.  My mental reaction has been much superior but the physical deficits are  on a par with if not worse than flagyl, so I will wait three weeks to decide whether to raise the dose.  By then, I may have observations from veterans of this wonder drug  (among other wonder drugs).

Yesterday, the 3rd day of this 23rd pulse, was a day of accomplishment, really a typical day.   I look back to a year and a half in the past and am grateful once again to be up walking around breathing.

Rica 

Pulse 22 and Beyond

I am almost to the middle of pulse number 22 and still functioning. 12 to 15 months ago is contrasting more and more clearly with the level of acuity of today and it is all on the positive side.   My thinking is still fuzzy and my walking is somewhat drunken-appearing but when my foot became tangled in a string that appeared out of nowhere I managed some dextrous dance steps and balanced my load and kept it and myself upright.   

The person who has my cane and has been on the protocol for about a month, is driving her car after not being able to do so for at least eight months - certainly since she was driven here last Sept. when she got my cane.  We have agreed that when she outgrows it, we will pass it on to the next victim we find.  She also went to our barn and lurched up and down the central aisle (a lot like I used to do), significant in that she had the energy to do it! 

Blog update

Just a quick update - unplanned - but such a good week I couldn't resist!  I finished the pill-taking of my 21st flagyli pulse last Sunday evening (it is now the following Friday afternoon) and woke up with my usual shout of "NO Flagyl" on Monday.  It has been a free ride since with only the best days - very long, hard-working ones of no fewer than 14 or more than 20 hours.    My situps and pushups and run/walks have paid off by getting me in better physical condition than I would have been.  I pushed but didn't punish.  I discovered to my delight that I can get up from a kneeling position by putting my right foot (bad one) flat on the ground and rising with the aid of 1 or 2 hands more for balance than dragging myself up, and since I have to do this about 20 times a day I am getting lots of practice and have not sat on a single kid!    I remember doing a blog months ago when I was thrilled that I could push/pull and rise like a 2 year-old.  Well, I am apparently now at least 6 or 7.  My stamina is incredible compared to my dark ages.    I will definitely continue my regimen for at least another couple of years with no break - I understand from the the patient histories that stopping early is not a good thing!

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