Ella has been suffering the after effects of her latest pulse for a couple of weeks now with no sign of her worsening symptoms abaiting. That is not to say that it is all bad news, her hand which had been going down hill is making a slow recovery which is encouraging, but since the last pulse which immediately upon taking her first tinidazole (within a couple of hours) resulted in a loss of strength in her legs, these latest symptoms have continued to deteriorate slowly. Another symptom that happened overnight was the 'flu' which I know is the immuneⁱ systems reaction to the cytokineⁱ call, so not a virus, which has left her with a persistent cough, associated mostly with her bronchi.

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 

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 melatoninⁱ. 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.   

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) melatoninⁱ, 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.

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.

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 melatoninⁱ - 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. 

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.

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! 

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 

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! 

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!

A 20 hour day was not possible last kidding season.  I could do maybe an hour on a good day.  Yesterday, we leaped up before  4 am and worked till 11:30 that night at a very fast pace with a 1/2 hour lunch break.   In a 2 day period we had 6 deliveries, i life-threatening, losing both kids but saving the doe, ending the day with triplets.  It is incredible to be able to do what needs doing and not just wish and watch Richard do it. 

This was a really good flagylⁱ pulse.   I hurt, was exhausted, couldn't remember or think, so I had a "sneaking suspicion" that it would be a good one.  It was - it ended only last Sunday (this is Wednesday) and my walking is very strong, albeit lop-sided but no worse than usual.  The amazing thing is muscle control and stamina.  For the record, I am in my 19th month of abxⁱ and that was pulse 21.

Swallowing and arthritis can be major problems for those of us who have MS.  Years ago when one of our old dogs was getting  very stiff from age I started him on Glucosamine/Chondroitin and 2 months later he was greatly improved so I began it.   I got less stiff and am still taking it, along with everything else on David Wheldonⁱ's list.  I also  had increasing difficulty swallowing along with many, many other little symptoms which several years later were finally dxⁱ'd - MS.  Lots of words to say that the swallowing problems are all gone to the extent that  for 4 days my brick of b- complex has disappeared in 1 piece right along with all others.  Since I began the supplementsⁱ I have had to break this in 4, then 6 mo ago, 3, pieces.  Last month I tried in in 2 and it worked.  Twice my husband has had to do the Heimlich on me.  I am repeating this - no more Heimlich.  I can take all my pills alone  without his vigilant supervision.

Having forgotten my melatoninⁱ 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.