"Notdoneyet's" treatment of MS for Cpn story

I was diagnosed with 95% probable MSi at age 26, in 1984, following my first full blown attack, which included double vision, ringing in my ears, loss of balance, tingling all over my body as well as numbness and rigidity in my limbs. I had been burning the candle at both ends, which probably set the stage for the full declaration of MS. I recovered in a month or so and was playing slow pitch, softball quite proficiently that summer. When an MRI was introduced to the Foothills Hospital in Calgary around 1986, I was positively diagnosed.

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.

Comments

I am printing up everything on this and taking it to my Neuroi on the 10th of November.   If he refuses to put me on them, then on to the GP I go, of he refuses then onto my other Dr.s .  I am going to be persistant in this.

I was diagnosed in December 2004 with having MSi.

I have now got 4 active lesions, and lots of symptoms. 

On April 12, 2004 I woke up with my left side numb.  Noticed my words were not coming out right nor was I able to remember some words.  On the 13th I decided to go into the hospital becasue I felt I had suffered a stroke.  Noticed cognative reasoning was gone to lunch.  Everything seemed gone.  Massive dizzy spells, but had been experiencing those for years.  Can take that back to when I was a teenager.

Exzperienced another stroke on April 25th same year.  My left hand and foot felt like they were frozen stiff.  I wore 3 socks on my foot and walked around with a glove on my hand.  Did no good but had to do something.  Noticed more cognative problems and a change in personality.

August 25th came and yet another stroke, something else was wrong.  I told my boyfriend no one survives 3 strokes like this.  Whats up with this.  This one left the insode of my right wrist numb as well as the inside of my inner thigh.  They are still numb.

November came and I really enjoy making a huge dinner.  I make is stress free.  I woke up feeling fine, a few hours laster I felt like I was going to have a migraine.  It just never really hit full blown.  with it being November I had a nice fire in the fireplace.  I noticed that the coals and flames were so bright, it was so bright it actually hurt to look at them.  I was so fatigued and stated it must be all the strokes and the effects of them.  The next day I went back to the hospital.

I was sent to an eye specialist, he siad I have a new migraine, optical. and requested another MRI to be done.  My first MRI showed one lesion in teh frontal lobe.  Now in November, the MRi showed 4 active lesions. Now the symptoms are here and most have remained with no remission.  Blurred vision, vision loss, double vision, vibration from hip to toe, pain in feet, stabbing needles in legs, icy spots, memory loss, cognative thinging problems, irritability for no reason, pain, muscle spasms, spastic bladder,   writing problems, spelling problems (great to have spell check), reasoning difficulties, multi tasking inability, forgetfulness, decision difficuties, understanding problems,.  There are more but head is thinking to multi tasking and forgetting everything.

These symptoms are all combined lesions and a few new ones.  There are days I want to grab that cane but don't.  I just hobble along like a 90 year old.  The pain is getting to be much.

With all of this my Dr. just says well its the MS.  I am so sick of hearing that it makes me so angry I want to hit the person saying it.  But I don't.  

I want to try this regiment, what do I have to lose, nothing.  But I stand to gain something.  I am on Copaxone injections I haveno clue if its working.  with new symptoms who knows.

Just wanted to say top those who hav ebeen given the chance and opportunity to try this regiment.  Blessing to you and make a stand for the rest of us.  We are now counting on you to help us prove to our Neuros to try this with us.

 

Blessing to all of you.

 

 

Leona

Leona

Hi, Leona!  Sorry to hear of your problems, but also very happy that you've found this site.

I only wish I had seen it when I was first dxi'd with rrmsi.  Oh well...  I see my neuroi on November 15th, to discuss treatment options as 3+ yrs of Copaxone have not stopped this disease for me.  The only "unchanged" mri's for me, have been while taking long-term antibioticsi for my chronic sinus infectionsi.  My recent mri shows advancing disease, and I am afraid, possibly an updated dx of spmsi(??)  It is just a guess as my neuro always holds his cards close, usually offering a shocking, "surprise" dx--kind of like pulling a rabbit out of a hat, but not quite as entertaining.  lol!  I do not like nasty surprises.

Anyway, I will be bringing copies of the info, here to show him.  Keep us informed.

Good health to you!

Kitkat2  :)  

Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.

GOOD GRIEF! Leona, have you been checked fo antiphospholipid antibodies? Anticardiolipid antibodies? Do you know about Hughes Syndrome? Run, don't walk and get that done before you go any further at all. 30% of people who have Hughes syndrome were first diagnosed erroneously as having MSi. The syndrome is characterized by coagulation problems, strokes, miscarriage for some, thromboses. The treatment is simple: heparin or coumadin. A little pill. You may take that now but please get this checked out. Here's a link for you to read written in lay language http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=822
Marie
mrhodes40

On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

So familiar is the story you tell! It differs for each of us in detail but so far the improvement is becoming familiar, also differing in detail. You must be one of those daring souls who are so boringly common around here now! No doubt this takes stubbornness and spirit- you obviously have it. Glad to meet you.

Rica

If you come to a fork in the road, take it. Yogi Berra

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

There is a czech version of "Notdoneyet's" treatment of MSi for Cpni story on http://www.chlamydie.info/node/1363 here.

 

Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi, then fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni. May 07 - big improvement

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni... 

Coufal, did you do that? Whoever did, you are wonderful! Thank you!

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 44 pulses NC USA

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.

I did not the translation. It was Li, another sufferer with Chlamydophila pneumoniae. She had to discontinue CAPi for now. She become pregnant, but she is still very active. We all hope she will become a happy mother. Jan CR /Prague; On CAPs:12/01/2005; 20 years CFSi, then fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni. August 07 - big improvement

On CAPs:12/01/2005 till March 2013; 20 years CFSi,IBSi, fibromyalgiai; about 10 years chronic sinusitis, laryngotracheitis, from 2002 hoarseness; from 2003 - v.s. lumbosacral meningoradiculitis, hypertensioni... 

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