Jim K, editor
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.
Now, I have a very real problem with sharing MY body with all the (bacterial) 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 first year and a half bounced between hell and the wonderful moments of "I couldn't do that before" which, incidentally, happen every day now when not on flagyli or its aftermath days.The latest amazing thing that has happened to me is that very suddenly my breathing is what is undoubtedly "normal". Since I was a kid, ( I realize now that it was after my pneumonia), taking a deep breath was a job that required attention if I did not want to cough. It is the latest of so many hard-earned events that I can't enumerate them.
Here are some of them: I can walk, think logically, swallow, talk without tangling my tongue, stand without spasming, go to the bathroom, sleep through the night, stay awake in the evening, get down to the floor voluntarily, get up off the floor, take a deep breath, pick up a board and nail it without the hammer going off into the sunset because my right arm now works, and trim the goats' feet. There are a million others that I exult in every day. As a matter of fact, I forgot to mention that last week, only 5 days post pulse, I went up on the barn roof alone (twice - I had to go down for more tools) after getting the 20' extension ladder from storage and carrying it 50'. Yesterday it rained, but the leaks are gone. An analogy comes to mind: I have to keep after the holes in the barn roof just like the bugs who want my body. So, a day at a time I will do this as long as it takes. My history is long of being the proverbial turtle; that is how I became a violinist - "You can't do that - you are too old", rebuilding a 100 year old house "You can't do both (play in the orchestra and build the house) and you are not a carpenter, electrician, plumber, etc., and "You can't get better - PPMS is incurable - go home and die". Well, guess what - some of us don't believe that.
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 indestructible 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.
My blog recounts the following nine years of slow, steady decline. I gradually lost my ability to walk and became truly a swamp-dweller. Through 2003 I took the goats to the Nationals with a 13 or 14 year old going along for the experience. One of us has to be at home to take care of the animals who stayed home - Richard, preferably, who doesn't like leaving for the 2 weeks the Nationals usually takes. Finally, on that very trip, I was so exhausted that I promised myself that if I survived the trip I would try to find out why I was so tired. A local neurologist said "You have peripheral neuropathy from drinking". It did not matter to him that I don't drink. He said it was not true. I was sent to Chapel Hill - "too old for MSi" they declared (I was 55). I had an MRI. It must be small strokes, they decided. Well, I tell you - Aggrenox is a mindbender drug! About now, I got a cane because I could not walk where I intended. Then finally, a pediatric neurologist to whom my husband sends patients saw me and was devastated with the results of a lumbar puncture - PPMS based on oligoclonal bands and history. I was fine but my husband almost fainted. He does not deal well with blood or invasive procedures! She sent me to an "expert" who started me immediately on Avonex.
This all took place in the summer of 2004 and in July at the Nationals we sold half the herd because it was obvious that I was very rapidly sinking. My "little" sister discovered Dr. David Wheldon's magic formula in Sept and I immediately began. At my next neurologist visit I told him and he said "NO, NO! You are taking your life in your hands!" I said "Duh!" I took Avonex for 77 weeks and in Dec, 2005 went to the same neurologist and excitedly showed him that I could jump and run in place and that I wasn't taking Avonex any more and he said "Don't come back". I had gone from "At least 6.7" to 2.5 on the EDSS and he was not interested in why!!!!
I took Rifampin and Doxycyclinei twice a day for 18 months. I was always hungry but I was mentally so foggy for 8 months that it was inconsequential. In August, 2005 I added Azithromycin. then Jan, 2005 stopped Rifampin, because I was hungry. My schedule was so tight that pretty much all I did was take pills. But now I was reentering the world and even if this extended the overall time I felt I could handle that. In 2005 my liver functions went sky high 2 times, but with careful monitoring this was traced to one single cause: AVONEX. Then in Nov., 2005 I noticed that Avonex was doing NOTHING for me and stopped. And I continued improving and have done so since. Sept. 05 I gave my cane to an MS acquaintance who is now on abxii and the trike I got in Jan 05 and the walker I always hated are waiting for a good home.
I recently finished my 23rd pulse of flagyl and have done 3 of Tinidazole. Over the year and a half of flagyl, I have gone from almost total vacuum to a nearly normal level of mental acuity and two thirds of my former physical level of energy from a low of less than 1%. This can be said only of the 3rd week of a pulse because the 1st week still leaves me "kinda fuzzy" and the second in a recovery mode which is where I am now. This pulse left me deliciously tired - not MS fatigue - so since the final day I have had several naps. Following my desire never to waste time, I am writing my story which I really have not felt competent to do till now. This pulse mentally was another marker, a turning point that all "veterans" have noted along the way. They vary for us all but they are there.
Having finished 28 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 couple of months 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. Now, two months later, I'm doing even better.