katman's blog

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">i. 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!

Quality counts

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 in MS

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.

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. 

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. 

Only a little Gloom

As I was disconnecting the computer, I realized I was becoming disconnected and that I had better come back and say a temporary farewell from the front lines to retire from active duty for 10 days or so.  Last night my legs were shimmering and glowing enough to keep me up  for hours.  This has been happening more and more clearly since I first noticed it about Nov, 2005.  My cycle seems to be about 18 to 20 days so I listened and began Flagyli number 20 - 375 mg 3xd - Fri am instead of Sat.  Obviously a day or so in time doesn't matter but the symptoms may help clarify the way for others.  The other points are that the gloom is settling in like a mist and I know it won't lift entirely for at least 10 days from now.  The other is a slight nausea which I think I have successfully pushed into the background for  a long time and will,  I hope, continue to do.

Anticipating Number 20

Anticipating number 20 Flagyli.  Only at the beginning was the cure worse than the disease, but now with eyes wide open,  I march into battle with the knowledge of the gloom to be   I think that is KK2's perfectly chosen description.

Last installment the feeling was just beginning to return to the right  side of my torso after 10 years of at least 90% numbness.  I have done my sit-ups and push-ups most days in hopes of helping this and it must have been doing some good because  very suddenly I can feel my abdominal muscles.  Consequently, more  movement is more under my control and my walking is better.   I feel a little more like me.

 This  last round of Flagyl has dramatically demonstrated the flat "gloom" brought on by it.  The whole week after, and really probably 10 days, I think I am coming back, but this is Tuesday and I am only now leveling out and I begin all over again on Sat.  I think once you know that you are not whirling into an emotionless, bottomless depression you are better equipped and can hold on to the fact that this is a passing part of the treatment.  My mind was apparently very affected by this disease (mostly past tense) which may account for my extreme fog.  I cannot believe how far back I have come, particularly in the 4 or 5 days before the next Flagyl -  "blue sky days" in Macks words, I think. 

MRI Reading

Like Beethoven, MRIs are even better the second time.  With the 1st MRI from Aug, 2002 missing (!), the local radiologist read the  films 2 through 5 and gave a verdict of overall improvement.  We will attempt to find the mysterious missing 1st film because it IS 1st and probably worst, having been taken because I was having so much trouble.  However,  3 through 5  were all done after beginning abxi Sept, 2004.   No. 2 was Jan 2004 before starting abxi, then Jan 2005, then June 2005, and finally Jan. 2006.   No new lesions and the existent ones are not as bright, especially in the latest.  I have no intention of sitting and waiting a probable year for the next but to get up every morning possible and do whatever needs doing at an ever-increasing speed.  Within reason, of coiurse! 

Highest Order Swamp-Dweller

Taking Marie's admonition to heart I am reporting while measurable achievements are fresh.  That sentence being one of them to compare to a year ago.  Day 1 of my 18th pulse I began my daily pushups (only 10) and situps again.   I stopped these last year due to lack of interest and inability. I can only manage 10 situps but I'll get back to my old 25 soon I hope.   My run/walk was suspended for a few days (still suspended)..  Early in this pulse (day 2 or 3) I could only do 5/8 of a mile instead of a mile, and it took 20 minutes or so.  Now, on day 5 I am wobbly (to borrow a phrase) and not sleeping well in spite of taking 1 1/2 melatonin">i (I believe these are 300mcg pills) last night.  There is no doubt that for about 10 days my body is at war and my mind is fuzzy - as opposed to foggy.  In other words, do not be alarmed at regression during pulses- the rewards are huge but not instantaneous.

MRI Results

Results from MRI no. 5 Jan. 21.2006   -  "no worse- stable- WOW" This was on the report from my doctor.  I spoke only to the nurse.   This is 6 months after no. 4  and is news that any PPMSi patient of 10 years would probably be thrilled to hear but I admit to hoping for a really earthshattering statement but this is good progress and we should all be satisfied that an important marker is noted.    For myself I must remember that Sarah went 2 years, I believe, before  HER earthshattering marker.   The main thing is physical progress which goes by mostly forward bounds with a good dampening  during Flagyli.  We will likely accept the offer of the local radiologist (he is actually a rotating radio.) to examine all 5 and see if he embellishes any.  Apparently not even this happens in PPMS cases like mine.    Remember, last month my neuroi said MS lesions never go away.  Sarah has already proven that is wrong.  I would appreciate any comments David has.

Raise the Flag (yl)

This is a short blog entry about being under the influence of Flagyli.  The first 2 days when I measured my 1 mile run/walk it  was a thing of beauty!  My time was 4 minutes for each lap of 700 feet- today it was more than 5 for the 1st lap and I was VERY tired after 3 laps and 17 minutes and stopped.  I ran not 1 step!  It was only 8 hours after my 1st dose and 1 1/2 after my 2nd.  I have to write this now because at this rate I will forget how to write by tomorrow!!  See you later......

Rica 

Syndicate content