"Notdoneyet's" treatment of MS for Cpn story
For the next ten years or so, I pretty much ignored the disease and lived a fully active life, trying to do everything. At age 36, I hit a wall. I had moved to Nelson, BC with a new, stressful job and a much warmer, summer climate. I had played slow pitch the previous year, but never ran in Nelson, partly I think, because I quit trying to. It was hard. Walking soon became difficult.
My biggest scare occurred in 1998, when I woke one morning to find I was blind in my left eye. The eye recovered over the next six months to about 60% and for the first time, I began to admit to myself that I would have to deal with this illness. I looked into disease modification therapies, which had recently become available and in early 1999, started taking Betaseron. I continued until midway through 2000, but when I quit, my MS seemed worse and I had scars or sores in all of my injection sites. I felt as if I had been sick for a year and a half and was better again. A step outside the box enabled me to participate in a five day canoe trip on Kootenay Lake in 2000 and I was totally invigorated by the exercise. I have been working out with weights regularly ever since.
The following few years, I was holding my own, as far as walking ability and balance, through exercise, but felt I was losing ground gradually in terms of other neurological deficits. Then, on May 8, 2004, I again awoke to a new world. I had totally lost my balance and I had a deep numbness in both my legs. My left foot had a condition which I lovingly refer to as "hot dog foot", where my foot felt more like a big hot dog than an appendage with moving parts. Walking was exceedingly difficult, I felt I was truly on my last legs and reluctantly started using a cane. I was becoming miserable about my future prospects, but an MS specialist reassured me that I could still lead a happy and productive life being blind and in a wheelchair. I was willing to accept the diagnosis, but not the prognosis.
My mother, the former nursing supervisor, has always been my medical chief of staff and in late May, 2004, she pointed out research in Calgary by Metz and Yong which found that the antibiotic, minocycline, taken daily over a period of six months actually improved MRI results in a small number of MS patients. I took this information to my family doctor who was glad to be able to prescribe something that might help me. Minocycline is so innocent that teens are often on it for years to fight acne. This drug had almost immediate results, as the "hot dog foot" disappeared within days of starting.
They say "find it on Google" and it's true. I wanted to find out why the antibioticsi had a beneficial effect and, remembering an MS news brief from a few years previous, googled MS, chlamydia, antibiotics. I found thisisms.com which led me to http://www.davidwheldon.co.uk/ms-treatment.html. This website outlined a causal theory for MS and a treatment regime as well as the gripping story of the recovery of Sarah Longlands, whose physician/ husband treated her MS as an infection. Sarah had recovered motor functions thought lost and showed reduction of lesions in MRI examinations. I could hardly believe it. It made so much sense and was compelling reading. I printed out the twenty-five or so pages and presented it to my GP, who once again was pleased that he could do something for me after ten years of watching me go downhill. I started on the treatment in late October of last year.
The antibiotic regime that I have been following for the past ten months is based on the premise that MS is not an auto immunei disorder, but is caused by a bacterial infection. Specifically, a culprit called Chlamydia Pneumoniae. Dr. David Wheldoni, a microbiologist in Bedford, England reasons that a chlamydia pneumomiae infection, in persons with a vitamin Di deficiency, causes multiple sclerosis. The bacteria is a common pathogen and may be responsible for a variety of chronic diseasesi. It is very difficult to detect, so he is prescribing antibiotics empirically, (because they seem to work), for many illnesses thought to be caused by Cpni. His work is based on the findings of Dr.'s Sriram , Stratton et al at Vanderbilt University in Tennessee.
I have been taking two antibiotics daily: doxycycline and rifampin. These agents put the bugs into a benign state, but if you stop they become active again. That's why the third antibiotic, metronidazole or flagyl, is taken, every three weeks, for a pulse of five days. This kills the infection while it's sleeping. Many have found metronidazole tough to tolerate, but I find it to be the straw that stirs the drink in my treatment. There is also a regime of supplementsi that are required as building blocks for axonal repair as the infection and inflammationi die down. This allows recovery to take place. The entire regime is available on the website mentioned above. The antibiotics cost about $200 per month and I spend $50 per month more for the supplementsi.
Almost immediately, I noticed changes taking place. It was the opposite of how the disease had come on, with moments of normalcy interrupting MS. I began to walk better, with more stability and my balance was restored to pre-attack levels almost immediately on starting the full Wheldon regimen . The numbness and tingling which had taken over my arms, legs and trunk gradually receded and is now present only in the palms of my hands and base of my feet. L'hermittes sign, one of my first symptoms, has all but disappeared. I still get spasms, but they are less persistent. My doctor and my optometrist claimed that, on visual inspection, inflammation in my optic nerves was reduced and I feel that vision in my left eye is improving. I put down my cane for good after about the first month.
I have been playing golf for the past three years, out of a golf cart and this year I've had tons more energy and have been playing much better, due to improved balance, stability and better endurance. Last year, there were several times when I couldn't finish a round because I could barely stand to hit the ball after 14 or 15 holes. This year I've never failed to play 18 holes due to tiredness and even played thirty-six holes one day. I have been scoring in the eighties regularly this year and could only manage that feat a few times last year.
After golf, on most days last year, I could barely walk and had to rest immediately for a couple of hours. This year, I've gone to work out later in the day, following golf and recently did a five hour work stint as a DJ at an open house on the same day I played eighteen holes. I never dreamed I would be able to do that in previous years. As you can tell, I haven't been sitting around waiting to get better. I play golf four or five days a week, six months of the year. Also, I try to work out with weights three times a week and I recently purchased a treadmill.
The first six months on the treatment was a roller coaster ride. Metronidazole pulses, in the beginning, can be problematic for some. as large numbers of bacteria are being killed off. Some symptoms can be exacerbated during these times. Sometimes you feel you haven't gotten better at all, but the good times are like, "Wow! I couldn't do this before!" I developed a bit of an itchy spot on my lower back on starting the treatment, but that is almost gone now. For the first while, I had some vertigo problems and took several falls, but I haven't had a serious one in quite a while now, as I can usually catch myself. The benefits certainly outweigh the drawbacks, though. It is no longer a question of , "Will I get better?" but , "How much better will I get?"
The swings are becoming less noticeable now, so hopefully sometime soon, I'll start weaning myself from the antibiotics. I am not all better by any means, but I'm not twenty-five any more , either. I am much improved, though and I've gone from "I'm doing poorly and getting worse," to, "I'm getting better and the trend is likely to continue." I am feeling happy to be alive and am looking forward to a brighter future, that doesn't necessarily involve wheelchairs or white canes.
My neurologist wouldn't prescribe antibiotics, but is observing my condition. The GP, who originally prescribed the drugs, has since retired from private practice and the doctor who took over my treatment has seen me only a few times. However, I have been fortunate enough to consult with David Wheldon over the internet and Sarah Longlands has been available at thisisms.com > forums > regimens to answer questions on a daily basis. David is a physician and microbiologist at Bedford Hospital in England. He is also a published author of poetry and prose and Sarah is an accomplished artist as well. They were so thankful with Sarah's recovery that they have decided to spread the word and are doing it with no financial recompense.