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TPALS Home Stories: Diagnosis Stopping driving Going to a wheelchair Positioning in Bed Feeding tubes Using a BiPAP Getting a trach Life on a Vent Power outages Resources: Communication Aids ALS Links.com ALS Survival Guide ALS Links More Links ALS Association MDA Misc. Issues: My Meds My Treatment Dr. Meagher & Pergonal Ron Leeb & ricin |
Most recent info is at the top. A description of my treatment protocol is on my meds page. Friday, Jan. 30, 2004 - summary In the summer of 2002 I had my amalgam (mercury/silver) fillings replaced and did oral chelation on the possibility that mercury might be involved in my ALS. I saw no noticable improvement, but I had no side effects from the chelation that some people have reported. I can't tell if this has helped me, but a year and a half later I'm still able to type. Monday, May 20, 2002 When I started my anti-mycoplasma treatment (meds.htm#myco) in Dec. 2000 I saw some immediate results. My neck was stronger, I could feel that my legs were stronger when I pedaled the restorator, and I slept soundly. I seemed to quickly regain at least six months' strength. These effects were slightly less during my two week rest periods off the meds and between sets of cycles. I did four six week cycles from Dec. to May, two more Aug.-Oct., and three more Nov.-Feb. Before I started the meds my neck had been getting quite a bit weaker. When I started the meds I felt like I regained more than 6 months of strength in my neck, legs, and overall. And the meds made me sleep well. But at the end of 14 months on and off the meds I could tell that I was weaker. My voice and neck were weaker, and I often bite the sides of my tongue now, which I didn't do at all when I started the meds. Also, I could sip coffee through a straw, but now that's almost impossible. But my saliva production is much less so I no longer need my spit towel. My ALS progressed over the 14 months, but that may only have happened while I was off the meds. I felt weaker when I was off the meds. Last December we started seeing research that showed that minocycline and doxycycline, meds in the tetracycline family, have direct neuroprotective effects and slowed ALS in mice. So I may have knocked out some mycoplasmas, but at least some of my benefit was this direct effect. One patient reported improvement with continuous treatment of minocycline, 100 mg twice daily. I checked with my doctor, and he confirmed that these are benign meds that don't cause organ damage. He has several patients with chronic staph infections that have been on that dose of doxycycline for years with no problems. I started taking minocycline continuously and felt stronger, but not as strong as with doxycycline. I switched to doxycycline and felt stronger. I had stopped my Immunocal supplement, so I restarted it, and that helped too. Right now I'm stronger than when I was off the meds, but I still can't sip coffee. Thursday, April 4 It seems that the progesterone, doxycycline, and Immunocal do the best for my cramping and twitching. Thursday, March 28 Restarted Immunocal. about March 22 The doxycycline has helped my cramping and twitching about March 15 The minocycline has helped some with my cramping and twitching, but I've done better before on doxycline, so I switched to doxycycline 100 mg, 2 x day. Tuesday, March 5 Started minocycline, 100 mg, 2 x day. My doctor said that neither minocycline or doxycline seem to harm organs, and are safe to take continually. He has several patients who have been on doxycline 100 mg, 2 x day for chronic staph for years without problems. Monday, March 4 I stopped taking Immunocal. Wednesday, February 27 I started a zinc supplement, 23 mg/day. I already get 15.2 mg/day from Ensure Plus. The idea behind this is that if SOD1 enzymes loose their zinc they become toxic, probably generating free radicals. If something is competing with SOD1 for zinc, zinc supplements may help. Friday, February 22 Last day of tinidazole. Saturday, February 2 The minocycline seems to be as good as doxycycline. I quit the Manapol and my constipation went away. Saturday, January 26 I started my last round 3 days early, and used minocycline instead of doxycycline because a research report and Deanna Hammond's experience in the ALS Digest suggested it might be better. Wednesday, January 23 My mom passed away peacefully in her sleep. Monday, January 7 I started supplements: Manapol: 40 mg capsules, 2 capsules am, 2 capsules pm Transfer Factor Plus: 2 capsules pm Friday, December 7 The first night off tinidazole I didn't sleep well, but have since. We found out that my mom had just been diagnosed with aggressive brain and lung cancer. So I haven't kept this page updated. Time to update (4/23). Friday, November 23 The tinidazole doesn't help as much as doxycycline with sleep and anxiety, but it does help some. Friday, November 9 I'm sleeping better immediately after starting doxycycline, and less anxious after a couple of days. It's definitely affecting my brain chemistry. Tuesday, November 6 I'm a little weaker than a year ago. I started 3 more rounds of doxycycline and tinidazole. Friday, October 5 I'm still the same, but not sleeping well. I haven't updated this page since the 9/11 attacks. Friday, September 7 I'm really over my respiratory bugs and I'm back to rarely needing to be suctioned. Friday, August 31 I'm done with my antibiotics for my respiratory bugs and almost done with this round of tinidazole. I don't need to be suctioned much now, but still don't have much energy. Tuesday, August 21 I've needed lots of suctioning, breathing treatments, and lots of In-exsufflator use. This is unusual. Two x-rays showed my lungs clear, but a culture showed heavy growth of 3 bugs. I've been so tired I haven't updated my web site. My doctor started me on antibiotics. Friday, August 10 I'm definitely sleeping better. I've been needing lots of suctioning. I've been using my ESTIM machine on my left biceps for about four months. It still has only trace movements, but noticebly more than before I started and more than my right biceps. I switched to using it on my left triceps because both triceps are stronger than my biceps, so maybe it will do more good there. Again I'll leave the right one alone for a control. Monday, August 6 I increased my progesterone from 10 to 20 mg. hoping it will help me sleep better. I can tell that I'm weaker than 3 months ago, so I started another round of doxycycline and tinidazole. Friday, July 27 I've had some trouble sleeping, but my legs seem a little stronger when I'm peddaling the restorator. Friday, July 13 I'm still the same. Friday, June 29 I'm still the same. Friday, June 22 I'm slightly weaker since stopping the antibiotics, but the pregnenalone is still helping. Friday, June 15 The pregnenalone has helped a lot with my energy and strengh, and I'm sleeping better. Wednesday, June 13 My energy and strengh have been down the last few days, especially in the afternoons. Still no supplements from the hospital, so I had a friend pick up the only one that would probably be available locally, pregnenalone. It has neuroprotective and mood enhancing effects. I'll start with 50 mg/day. Friday, June 8 I'm still having more cramping in my neck but none in my hands. My neck is a little weaker. Hospital red tape is holding up my nutritional supplements to strengthen my immune system. Friday, June 1 My rash is gone. I still have my strength, but I'm having more cramping in my neck, and some cramping in my right hand. Thursday, May 24 I woke up with a rash on my arms, chest, and abdomen. My doc halted my H. pylori meds. Tuesday, May 15 I've finished the meds. I still have my increased strength and rarely need suctioning. Today I started two weeks of Amoxycilin and Clarithromycin to treat H. Pylori. Tuesday, May 1 I started the last round of Tinidazole. I still have my increased strength and rarely need suctioning. Friday, April 27 After two weeks on the estim machine 3 to 5 times/week, 30 to 40 minutes each, my PT says that she can see that I can flex it noticably more than my right. I can feel the difference too, but it's not enough to move my arm. Tuesday, April 17 I started the last round of Doxycycline. I've been slightly weaker the last couple of days of the rest period. Sunday, April 15 I skipped last night's dose of Prevacid but still had slight heartburn this morning. Saturday, April 14 My nurse noticed that I had no blood in my residual. I realized that I hadn't seen blood or had heartburn for a long time, probably since I started my new meds. I remembered that in reading about Tinidazole I found out that it's one of the meds, used in combination with other meds, to treat H. pylori! I'm guessing that I have H. pylori in my esophagus (probably my stomach too), and that the Tinidazole has knocked it down some. I'll talk to my doc about treating it more aggresively. Maybe I can get off the Prevacid. Friday, April 13 It seems that the meds have halted my ALS, or slowed it to a crawl. That's answered prayer. The next step is rehab, which may be useless until I get stem cell implants, but worth a try. I got an electronic muscle stimulator which I will use on my left bicep, and use the right bicep as a control. They are both gone, useless. Friday, March 30 I've had lots of twiching in my left triceps on and off for two days. I haven't had major twiching like this for weeks. Monday, March 26 My emotions and energy crashed. I don't know if related to the meds. Probably not. Monday, March 19 I still have my increased strength and rarely need suctioning. Monday, March 12 I have my increased strength back. Tuesday, March 6 It's my first day on round 3 of doxycycline. Monday, March 5 It's the last day of the rest period. I have less strength and stamina than when on the meds when peddling the restorator, and less strength in my neck. Friday, March 2 I'm still in the no meds rest period. I started out on the restorator with my increased strength, but tired out more quickly than when on the meds. Tuesday, February 20 Starting my second rest period. I still have my increased strength. I wasn't hungry on this round of tididazole. Wednesday, February 14 I saw my face in a mirror for the first time in a long time. It's very pink, like someone with a very light complexion and a sunburn. Monday, February 12 I was off the vent for 30 minutes again. Sunday, February 11 I was off the vent for 30 minutes. That is improvement, because before the treatment 10 minutes would have been a struggle. My O2 sat remained high, but my heart rate was up. I had to concentrate. I was a little fatigued afterwards but not drowsy. Thursday, February 8 I still have my increased strength. Tuesday, February 6 I started my second round of tinidazole. Sunday, February 4 I skipped my progesterone for a few nights. I didn't sleep as well. Thursday, February 1 I still have my increased strength and seem to still be gaining some strength in my back, abdominals, and hands. My pedaling on the restorator also seems stronger. Wednesday January 24 A friend I hadn't seen in 4 months visited, and he could understand my voice. Tuesday January 23 They started my 2nd round of meds today, a day early. The neck weakness I felt the last couple of days is gone. Sunday January 21 My neck seems weaker. I had large twitches behind my right shoulder and in my left triceps for several hours. Thursday January 18 I still have my increased strength. My rash on my arms and legs and my itchy ankles are still with me. I hoped that they would go away. I had a large twitch on the left side of my neck this morning. Thursday January 11 It's my 2nd day of the "rest period" off the meds. I'm not as hungry, still have my strength, and don't have any more large twitching. Wednesday January 10 The shoulder muscle continued to twitch. At night a larger piece of that muscle began twitching. Tuesday January 9 The shoulder muscle continued to twitch on and off, so much so that it got sore. Monday January 8 A muscle at the back of my right shoulder twitched on and off all day. This same muscle had twitched some at the start of December. Sunday January 7 A muscle in my right thigh twitched on and off for a couple of hours. January 6 I still have my increased strength and still fatigue easily. January 4 I still have my increased strength and still fatigue easily. I still have a constant low level hunger. I could use a big, juicy cheeseburger. With pickles. I had a large twitch on the left side of my neck on and off for about an hour. My neck cramps have been stronger for the last couple of weeks. I don't know if that's good or bad. December 29 My neck still has about 4 or 5 weeks of regained strength, my hands, arms, and legs about 4 months or more. I'm still hungry. My web host finally came back up. December 28 I'm hungry again when my food is turned off at 8am. Today is the big dose of tinidazole, two grams. I'm hungry most of the day and still have increased saliva. I have no other side effects. December 27 First day of tinidazole. I have more saliva, but not thick. About 20 minutes after my food was turned off at 8pm I felt hungry. First time in years. (Watching the food channel doesn't help.) December 26 My last day on doxycyline. I seem to be gradually gaining more strength, but still fatigue easily. I rarely need suctioning. December 24 I still have my increased strength but that small muscle was twitching again for about half an hour. This isn't good. My muscles should stop twitching, I shouldn't see new muscles twitching. December 23 The aid that I had today commented that my voice is stronger and that I can give more resistance during range of motion exercise. He hadn't worked with me in at least three weeks and didn't know that I was on the new treatment. At night I felt a small muscle near my collarbone twitch on and off for about ten minutes. I hadn't felt this muscle twitch before. I have a slight rash on my abdomen. December 22 I went home for our Christmas and survived the two hour round trip with more energy than the Thanksgiving trip home. My web host goes down for maintenance. December 20 My parents arrived for Christmas and hadn't seen me in a month. My dad said that my voice is stronger and clearer and that my face is pink to the point of being flushed. My arms are also pink, not their usual gray. I reviewed my notes and saw that I had been treated with doxycycline for "cat scratch fever" in 1983. I had to quit because I got hives. December 19 Friends brought a new monitor last night so I'm back on line with a very full in box. I'm not having as much trouble with excess saliva or thick saliva the last few days, and I haven't needed as much suctioning as usual. December 18 Today's nurse is someone I have not seen in a week. She says that my face looks fuller, in a good way, not bloated. December 17 First thing in the morning my monitor quits working. I still have my improved strength, but I tire easily. I'm sleeping better, very soundly. December 15 My nurse commented that my voice is easier to understand. December 14 Before I even had my doxycyline this morning (my 2nd dose) I can tell that my right hand and neck are noticeably stronger than 2 days ago. I have little trouble squeezing the bulb and putting my head down and pulling it back up again are less of an effort. I'm guessing that's a recovery of about 2 weeks of strength in my neck and 4 or 5 weeks in my hand. I used my neck a lot and it was pretty weak by the end of the day. I had a very strong yawn, but it didn't turn into a neck cramp the way they usually do. I use a restorator 3 days each week. It is a pair of bicycle pedals that attach to my wheelchair. I'm not strong enough to turn the crank so I rock it back and forth. Today I could rock farther and for a longer time without getting tired than I had been able to in maybe a month or 2. Could it just be placebo effect? December 13 The first day of doxycycline, given about 10am. Early in the afternoon I had trouble breathing. I'm on a vent, but I have to keep my vocal chords closed during the "inhale" because I have an uncuffed trach. I was weak and having trouble doing this. I wore my nose plugs for a couple of hours which took care of the problem. I don't know if the doxycycline had anything to do with this. It may have been due to my B12 shot being several hours late, and B12 has a big effect on my strength.
About 12 hours after the doxycycline it seems that my right hand is
stronger. I use a squeeze bulb in my right hand to control my
communication computer. My hand has been so weak in recent weeks that my
aids have had a difficult time placing the bulb so I can use what little
strength I have. It's been a big effort just to "type" simple messages.
But tonight it seems easier. Maybe the bulb is just placed well? |