Melatonin

Hormone secreted by the pineal gland in reponse to darkness. Regulates circadian rythms, is antioxidant and anti-endotoxin. Used to promote sleep.

Changing my Protocol

After almost 18 months of 2xd Rifampin, Doxycycline,  8mo Azith 3xweek, and 20 pulses of Flagyl, 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.

melantonin

With the increase in meds. I am having some old sleep disturbances(which I thought where long gone). I looked at the melantonin but it says not to take if you have an autoimmune disease. I don't have postive lab results but am clinically presenting as sjogrens. Is there an advice on this?

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 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 

Another reason to take melatonin

As we know, Cpni binding endotoxini uses up melatonin and supplementation has been helpful to a lot of us. In addition it's an excellent antioxidanti. The study below adds even another reason to supplement it:

J Pineal Res. 2005 Oct;39(3):266-75.

Melatonini neutralizes neurotoxicity induced by quinolinic acid in brain tissue culture.

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