I had not planned on witing an entry, but with all the talk of being cold, I had to. For several years, I have been increasingly cold below 50 F. My standard outside clothing has been t-shirt, turtleneck, sweatshirt, snow suit and a down jacket and I was STILL cold. This winter, after 15 months on abx, I wear t-shirt, turtleneck, and sweatshirt. When it has been in the 20's and 30's I wore a jacket but took it off in the barn, which is not heated. This is all absolutely incredible!. My boots are not out of the closet and I have worn my sneakers every day. On a philosophical note, we are so attuned to instant everything that we can't seem to comprehend that this is NOT overnight. As for my stopping abx, I am still improving at such a rate that I will wait for a "sign" that it is time to change something. My conviction is total that I have a chance (maybe one) to get some of me back. I will do everything possible not to jeopardize that, and I want to see how much.
Please read this very carefully.
I mentioned in my first blog http://www.cpnhelp.org/?q=sarahs_illustrated_blog#comment that there was much I didn't remember about the early days of my treatment. I have never been a terribly good record keeper, but I did start out keeping a journal. For a few days I even added to this daily, but soon I could go for a couple of weeks without adding anything. This period rapidly became longer and then eventually I ditched it all, probably in a fit of pique. I had no intention then of taking part in anything like ThisisMS or this site. If I had I might have been more circumspect. In one way it is good that I even now only remember something when someone experiences a similar reaction themselves, because if I had a list of absolutely everything and had put it all down, then I might have risked putting ideas into someone's head. It is better if someone new to the treatment suddenly comments about various things - I'm going carefully here lest I say something that hasn't been mentioned yet! Let's take one of the most recent comments on the board about a desire for hot food: if someone has not experienced that at all, they might feel that they are not succeeding! Then there are Karen's blue toes, or my early experience of putting my feet down to the ground when I got out of bed when the weather first turned wintry and feeling the cold floorboards, one toe turning blue and the toe nail actually coming off. It has grown back perfectly now, by the way!
A very important thing that I want to mention here, though, is something that I only realised a few days ago when talking to someone who started antibiotics this year, back in Early August, nearly exactly on the same date as me two years previously. This person is just about to start his third pulse of tinidazole, timed to finish on December 25th and yet I have been saying that my only really severe reaction was during my third pulse. It can't have been because I didn't experience it until February, so it must have been at least the fifth. I think it is important to say this because many people are almost looking forward to feeling that something is happening yet will never experience the agonies that other people do and so might just think that they are failing somehow with the treatment, like with the ubiquitous Marshall Protocol, where if you don't go through purgatory and back several times over, you are made to feel like you failing. Its not like that, if you don't have a build up of CPn in your limbs, you won't feel it there. I felt nothing in the first pulse: I had already gone through the true herxheimer "almost going down with 'flu" feeling when starting on the doxycline. It was shortly after this that I nearly gave up the treatment because we both thought it wasn't working. Remember I was David's first chronic CPn patient.
Improved at neuros office!!!!! I went in for my first visit since starting the abxii in sept. My neuroi had to admit that my leg strength has improved. Although he told me that it was from doing physical therapy, but when I said I have been doing pt for the last 2 years, he said nothing. He is not the one prescribing the abx for me. He had a smirk on his face which I knew meant....She thinks shes getting better from the abx. But on the other hand, my raynauds is worse than ever. My pinkie toes are both blue. Has anyone had this get worse while first on abx? I have talked with Sarah and she said this did happen to her.
Well, gosh inquiring minds want to know how goes it with me so I am here to oblige. Thank you friends for the kind interest.
Last evening I took my first flagyl dose, one pill one time (250). Oh yuck! Blech! Pooey! Tastes terrible! I will place future ones in 000 capsules (ask the pharmacist for "triple ought capsules" or you may find them in your health food store, often for less).
I spent the night feeling hot then cold and nauseous, and I slept late. When I got up my right leg would not lift but dragged the floor with every step lightly (because I can lift it a tiny bit but not enough to clear) This is worse than usual. I drank a lot of water and took a bunch of vitamin c also as a morning activity along with my supplements. Then I felt better.
On the energy angle, I spent the weekend with my sister and we took the dogs to the dog parks, meaning I "walked" with a cane about 1/4 mile to get to the field to throw things for my border collie. I walked poorly, but I did it. Interestingly, I recovered fairly quickly and was able to "walk", again badly and with my cane, to go shopping with her. I certainly did not feel a whole lot more functional. In fact, I kept thinking "Oh crumb this is hard and I am not that functional. That darn leg! Still floppy. Maybe I'm not better" But in reality for the last year I have been going to my tiny local mall if something was necessary, parking at the disability closest to the item needed (like the Penney's Shoe door) then getting it and leaving. Why? Because I'm so wobbly I might fall. Even 2 months ago I went and got my husband shoes and needed to go up the escalator and get a new espresso machine but bailed as I was too wobbly to want to do it. Now this weekend I wobbled with my cane for 4 hours from thither to yon. The walking was bad, but I had enough energy to do it, so this is actually a big improvement even though I walked very badly and at the end, my right leg was so weak it was essentially non functional, every step the foot dangling like a floppy fish on the end of my leg, but I was still feeling OK like all I needed was to rest a bit and I'd be fine. I managed to purchase a few stylish duds also. I told my Sister it's been years since I felt like I was wearing something other than "challenged person's easy wardrobe" AKA sweats or stretchy stuff, and it feels good to have one spiffy outfit to wear should the need for dress up come along.
All to often in the past 13 years I have felt betrayed by the medical profession. Hoping that they really care and are truly interested in helping me to treat and get over this sickness that I have struggled with for so long..To try and continue to work while dealing with this has been a battle in itself.. Putting my family and the people that care about me is also such a deep feeling of guilt that I am putting them through this never ending struggle..Will it never end?
The beginning of my adventure into life with PPMS. I was going to Vandy originally w/ my wife as she had symptoms that appeared to relate to MS, I started doing a lot of research into MS trying to find all that I could about MS. Well what I was finding related so much w/ what I was experiencing too. I set out to get a referral with a local Neurologist in a fairly large metropolitan south of where I live. This guy I believe had yet to complete his course at Sears. He scheduled me for a lumber puncture (LP) to be performed at his office. Well the day of the LP came around and I went in to have it done. This guy stuck me not once but three times and misses it all three times. Now mind you my wife was the nurse after the third time he got a little miffed and left the room. My wife had to clean up the mess that he left.
The usual blinding fog has not descended and I am in the middle of day 4 of 5, No.15 Flagyl pulse. But my walking has held, my mental acuity also, and the worse-every-night unpleasant "shimmering, glowing sense in my legs" is almost gone. (That is why I began this Flagyl 1 week early) Today I will go for LFT and will after that take my Avonex which will be 8 days. In the past I was on an ever-declining slope of physical capabiliy, wishing earlier and earlier that I could have my interferon so that I could be a little less tired and walk a little better (with cane or walker) for a few more hours- after the reaction of at least 20 hours had passed, of course. This morning I did the test for myself that neurologists love: the shin test. All of us who can stand are familiar with that: you stand, holding on of course, and run the heel of your bad leg down the other shin. In the past I could not get within 3 or 4 inches except when I hit it by accident on the way from here to somewhere else. As a matter of fact, at some point I could not even lift my foor from the floor. This morning I ran my right heel (the bad one) down my left shin and then again and again. Not only could I run it up and down, it goes without saying that I could PICK UP my foot to do this. I just now stood up to do it again this minute and did it without holding on to ANYTHING. Perfect, or close enough! Where is Marie???? Remember, this is 8 days after weekly Avonex on day 4 of Flagyl! Stay with it, guys. Requirements are lots of patience, choking down lots of pills, and the knowledge that you may not be what you were before this nightmare but I bet you will be better than your worst! None of us expected to get better so this is miraculous. And I have two strikes against me. I am an "older patient" (I am 66 going on 35) and I am PPMS. We are supposedly limited in our recovery in either case. If this is "limited" I definitely say "GO FOR IT!
A Flagyl rhythm is emerging. Maybe I was not mentally clear enough to see it before or maybe it was not there. Maybe it is the stage of recovery or the addition of Azithromycin and NAC a couple of months ago. My 14th pulse of Flagyl ended 13 days ago but my body is telling me to do it again. I have become aware the last few months of not a tingling but a "shimmeriing, glowing" after about 12 days post Flagyl. I feel REALLY good after the fog wears off (about 4 or 5 days after finishing Flagyl) then there is a buildup, very subtle at first, now clamoring, of -what?. I woke at 5 am wondering if I could take 1 dose of Flagyl of 500mg. (in the US we have 250 and 500mg) per day every day or if I might just begin a week early. My walking is not as good either- not bad, but it was better than ever 12 days ago.
Here I am at Day 5, post Flagyl the 14th. My mind is clear, it is winter (NC version. That is why we are here- it is like Texas with trees). I am walking really well and yesterday walked 1/2 mile over rough ground because I could. I had admirers with me- our 4 dogs. They thought it was a great idea! The most amazing thing is that I am not only not freezing, I am comfortable and it can be in the 40s F. For a number of years I have worn as standard outside clothing below 50 F.: t-shirt, turtleneck. sweatshirt, snowsuit, down jacket. It has been in the 30s F. and I have worn only t-shirt, turtleneck, and sweatshirt, at times removing the sweatshirt in the barn. Only twice have I worn a jacket because it was raining. We have a down comforter that goes to -20 and it is still put away.
8/13/04 Just a little over a year ago. On 8/13, and for several months prior to that, I was accustomed to riding a bicycle at least an hour, 5 nights per week. I usually covered 12 miles or so, riding by myself in town traffic. Occasionally I'd cover 14 miles in hilly terrain, just to challenge myself a little more. If you don't ride, I will tell you that this is a decent ride for a middling club rider, and a really good ride for a 54 year old guy. 8/14/04 Went to the hospital emergency room with heart palpitations that lasted on and off for about 6 hours. They were continuous enough to cause dizziness. My wife could see the heart monitor over the bed, and she'd say "There was one", or "Oh, that was a big cluster", etc. They were quite distinct on the monitor -- she's a teacher, not a medical person. Released to home -- "Something's going on, but it's not dangerous. See Family Dr." 8/14 - 9/30 Began having exertional intolerance and gall bladder attacks. Cardiologist found "nothing significant" on EKG/Holter Monitor. Felt cold during prolonged exertion instead of warming up. Took days to recover from vigorous rides. Eliminated virtually all fat from diet. 11/04 Lap. Cholecystectomy -- uncomplicated. Advised by surgeon that fatigue was probably not related to GB symptoms, and to exercise regularly, "push yourself a little." Back to normal diet. 2/05 Stress Echo on heart "normal". BTW, this is "office nurse-patient-normal," which in the US means "you won't collapse coming in from the parking lot, and I am very busy." I once had a blood lipids panel in which every single test was at least slightly outside "doctor-normal," but which was reported to me as "normal." I later found out that the Stress Echo wasn't "doctor-normal," either -- just abnormal in a way that they felt was safe to gloss over. (inverted/ prolonged t-wave.) 2/05 "Usual fatigue suspects" blood work normal. I mean 'doctor-normal;' I'd learned to get the results myself w/o the benefit of the office nurse's opinion. 5/05 Decided I was being a wimp, went for a ride -- covered 14 miles in one hour over hilly terrain. IQ for the next 3 days slightly lower than dryer lint, slept 12 hours per day, arms shaking, breaking into spasmodic dyspnea. I either shouldn't be able to do a ride like that at all, or it shouldn't take 3 days to get over it. 5/05 Asked Dr. to call in scrip for prostatitis -- Bactrim almost eliminated symptoms. Walked all over San Franscisco for 3 days. Every day was like 3 stress tests back-to-back. Felt great. 6/05 Following their brief vacation, symptoms returned with a new attitude, up and doing, ready to take me down and keep me down. Began having problems understanding simple English sentences, missing turns while driving, etc. Very difficult to keep "fronting" at my work. I am a computer programmer; most days my duties are like two college entrance tests back-to-back. Some days I couldn't understand the programs I wrote the day before. Dr. did more blood tests, came back 'doctor-normal'. Advised me to have a sleep study (I have Obstructive Sleep Apnea, have had for years.)If sleep study was essentially unchanged, I was to start taking Wellbutrin -- "shown to be helpful in conditions like this." Q: does Wellbutrin improve exercise tolerance? The manufacturer would be tickled to add that to their claims, I'm sure. Discovered that my ESR, while 'doctor-normal' in the US, would be considered abnormally low in the UK, where it would be considered a marker for CFS, Idiopathic Cardiomyopathy, or Sickle Cell Anemia, depending on other symptoms. 8/05 Sleep study shows no change in oxygenation levels, but development of 'hypersomnia' (if I am not moving, I fall asleep), and Intermittent Limb Movements, both consistent with CFS. No explanation of cause was offered: started Cinemet for ILM; Wellbutrin because Dr. secretly suspected depression, I think.