Also getting better on antibiotic regime

Tell us what you are using to treat your MS-- and how you are doing.

Postby Notdoneyet » Wed Apr 20, 2005 11:28 pm

Hi All,
It's now been six months that I've been following David Wheldon's antibiotic regime and I took minocycline for five months previous to that. I haven't posted for a while because I've been keeping my nose out of the book, so to speak. Also, I've been recovering from colds and injuries in the last couple of months and haven't had much to say. Following is a complete rundown of my symptoms and their status.

Walking - much improved in quality due to better balance. I have times when I feel quite stable and at other times I feel rather clumsy. I started walking on a treadmill last October and that has also been a key to recovering.

Balance- much improved

Spasms - still experience what I've seen described here as restless leg syndrome at times, but not nearly as persistent or bothersome at bedtime as it used to be. I am no longer using baclofen, but I never used it consistently anyway. I would say that my spasticity has improved somewhat, but my neuro might say different.

Headaches - haven't been as bothersome this year. They've still been coming on, but my mitigation technique has improved to the point that I can eliminate them through application of cold to my head, before it gets extremely painful. These headaches may or may not caused by MS, but occur when my body temperature is raised too fast.

Sensory feelings - numbness in my legs has decreased immensely. Tingling in my hands and feet is still present, but at times is much reduced

L'hermittes sign - has completely disappeared

Speech - improved, less slurring

Bladder - still experiencing some urgency, as well as hesitation problems

Endurance - I'm proudest of this one. Today was opening day for my golf season. It was like the first day of summer holidays. I've played golf for the last three years, using a golf cart and stumbling my way around 18 holes. On opening day, the last two years, I've only been able to manage 14 or 15 holes before I could no longer stand to hit the ball. Today I played 18 holes and was still walking relatively well after finishing. Finally, a somewhat objective test and I passed with flying colours.

Optic Neuritis - My vision seems to be clearer in my left eye, with fewer (smaller?) blinspots, but that hasn't been proven. Next month.

Thinking - I am definitely smarter than I was last year, but I say that every year.

I have had several incidents where I've experienced vertigo and taken a tumble. Fortunately, I haven't broken anything yet, but last time, I sprained my knee while attempting an acrobatic move. It's taken a month to get over that one. But cuts and sprains are just temporary obstacles and I can handle those. I think that often I'm moving quicker because I can, and my body isn't quite ready yet. I am still experiencing some skin irritation on my lower back, but nothing serious.

I'm kind of surprised at everyone's fear of metronidazole, but I guess the first couple of hits were a little unnerving. I only lasted two days the first time. Keep your head down and power through it. It will get easier. I look forward to each pulse now, as they seem to bring good results and have extended them to seven days the last three times.

The burning question is: Would I do it again? You bet I would. I'm not all better (but I'm not 25 anymore, either) and don't expect that I will be, but I have been in decline for twenty five years and I've finally got things going in the right direction. Also, there is the real hope that things will improve further. In any case, even if I didn't get any better, it would still have been worth it, especially when I consider that it's possible that progress of MS might be stopped. My life has changed for the better, not only physically, but in my attitude and in prospects for the future.

By the way, I finished in 46-51-97 today. I had five pars, two triple bogeys and way too many doubles. Hopefully, I'll be better tomorrow.

Colin
Last edited by Notdoneyet on Thu Apr 21, 2005 11:27 pm, edited 1 time in total.
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Postby Arron » Thu Apr 21, 2005 12:48 am

Colin-- outstanding! Thanks for sharing your story.
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Postby debbie8067 » Thu Apr 21, 2005 7:33 am

Hi Colin.
we've never actually "spoken" but I've been following your progress avidly.
I'm now at the end of my 5th month on David Wheldon's regime.(what a lovely man)
Your post was so timely and almost lifesaving as I'm at such a low point physically and emotionally.
After a really great start during Jan and Feb, when walking was so much stronger with just a slight limp and no more l'Hermittes sign,i then picked up some lovely flu-type thing from my 9 year old son which knocked me sideways.
The general worsening again of walking since Feb has very suddenly become horribleand frightening and my weaker right leg has all but died on me.
I still haven't been allowed to start my first pulse of Metronidazole as David and Sarah think that will not help at the moment-but how much worse can things get?
David also warned that this "bad" time could last up to 6 months,so your really positive and encouraging post has stopped me from throwing all those Doxycycline and Roxythromicin away!! :?

I really hope you continue to improve and thanks again for your great timing!

Kind regards
Debbie
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HEY COLIN

Postby ropingheeler » Thu Apr 21, 2005 9:19 am

HI COLIN GREAT TO HEAR YOUR REPORT AS SOON AS THIS STUFF STARTS TO KICK IN FOR ME IM TRADING IN THAT CANE FOR SOME CLUBS AND COMING TO TAKE A LITTLE MONEY OF YA LOL
KEEP SWINGING FOR THE GREEN
JEFF :lol:
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Postby Notdoneyet » Thu Apr 21, 2005 11:25 pm

Thanks Debbie and Jeff for your kind words. I think it's important to stay positive about this thing. Can you tell I once wrote advertising copy? No false claims here, though.

Debbie, I've been limping quite a bit lately, too, but everything else is going well, so I will work a little harder in the weight room on my legs. I'm sure that I'll be better off in a few days.

Colin :)
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Postby SarahLonglands » Fri Apr 22, 2005 7:18 am

Thinking - I am definitely smarter than I was last year, but I say that every year.
..........:!: :?: :!: 8O.....hmm!

I'm kind of surprised at everyone's fear of metronidazole, but I guess the first couple of hits were a little unnerving. I only lasted two days the first time. Keep your head down and power through it. It will get easier. I look forward to each pulse now, as they seem to bring good results and have extended them to seven days the last three times.

Well, I have just about finished my umpteenth go with metronidizole, so I will probably do my own update next week. However, I will just reiterate that it does get easier. Even now I feel a bit tearful, but that is all. A near neighbour being treated for chronic fatigue has apparently had no bad effects whatsoever, or so he says.

Thankyou, Colin for doing this well timed posting, I think you must have caught the eye of several people not as advanced as you in the treatment, who have all been feeling a bit the worse for wear at the moment.

Sarah :)
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Metronidazole

Postby Brainteaser » Sat Apr 23, 2005 10:52 pm

Dear Colin & Others,

Well done Colin, it's great to see such positive and inspiring posts.

Question: I've had one course of Metronidazole (7 days) and didn't experience any significant effects. Do others think this is a positive outcome and maybe I should continue and even ramp it up....or, could it mean I don't have high bacteria levels? Any comments?

Also, Deb - Do you think the Aimspro you (I think) are taking, is having any impact on your condition, one way or the other?

Regards,
Phil.
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Postby debbie8067 » Sun Apr 24, 2005 3:02 am

Hi Phil
I wish i knew!!!
The aimspro started off brilliantly 15 months ago but gradually stopped making any real difference which is why I started david Wheldon's regime.
Again that was giving me definite and immediate improvements. I carried on using both on david's advice as they do different things.

However, the past 6-8 weeks have been quite terrifying as I can now hardly walk at all and I've never had an attack/relapse like this before in 16 years since dx.

I'm praying that it's just a glitch in the overall pattern of antibiotics or maybe it's because I was already SPMS when I started them (like Sarah).
Who knows what's happening but I'm at the stage of dreading waking up each morning and only my beautiful husband and boys are keeping me going.

Sorry to sound so pessimistic on my first reply to you-I'll go and put the kettle on(with great difficulty!) and keep smiling. :wink:

take care yourself

Debbie
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Postby SarahLonglands » Sun Apr 24, 2005 4:32 am

Good morning Phil and everyone,

I have no experience of Aimspro, so can't say one way or the other, however my experience with the antibiotic regime is that I didn't feel any particular difference until the third go at metronidizole, then I was in absolute agony across my shoulder and down my right arm. It might hit you somewhere else or it might affect you in a different way or even not at all in a noticeable way, mainly, I think, because it all depends where the germs are holed up. There is one man here in Bedford who has made amazing improvements without feeling anything very much at all. From being unable to walk more than about 50yds with quite a limp before stopping, he can now lope the three or four miles from his home to the hospital and back, doing some shopping in town en route. He did break his arm, but this was due to other things!

Thinking of Colin here, he must be definitely smarter as well because he got a promotion at work to a post with much more responsibility. :wink:

However, the past 6-8 weeks have been quite terrifying as I can now hardly walk at all and I've never had an attack/relapse like this before in 16 years since dx.

Debbie, that is what I thought in August 2001, when, having felt a bit strange all week, I came out of the general post office and realised I could hardly walk. I certainly couldn't have walked back home, although it is hardly half a mile away. I was absolutely scared stiff. :cry:

You are going through a very bad patch at the moment, but the relapse did follow a bad virus attack, very difficult to avoid with two young boys. Looking on the good side, you haven't got to the stage of SPMS when you don't get relapses any more, just gradual progression. This is when you are far less likely to benefit. I must have been caught just in time because I hadn't had a relapse for two years and was just getting inexorably worse. By the cold and flu season next year, you will be way out of the danger period. :)

Sarah
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Postby Notdoneyet » Thu May 12, 2005 10:02 pm

Following is an update that I wrote for a local MS Society publication. I've since started metronidazole again and am feeling even stronger:

The antibiotic regime that I have been following for the past six months is based on the premise that MS is not an auto immune disorder, but is caused by a bacterial infection. Specifically, a culprit called Chlamydia Pneumoniae. Dr. David Wheldon, a microbiologist in Bedford, England reasons that a chlamydia pneumomiae infection, in persons with a vitamin D deficiency, causes multiple sclerosis. The bacteria is a common pathogen and causes a variety of chronic diseases. 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 Cpn. His work is based on the findings of Dr.'s Sriram , Stratton et al at Vanderbilt University in Tennessee.

The treatment involves taking a trio of antibiotics. In my case, they are doxycycline and rifampin, which are taken daily to force the bacteria into a dormant state, as well as a five to seven day course of metronidazole every three weeks to kill the incapacitated bugs. The use of multiple antibiotics increases their effectiveness and prevents antibiotic resistance.

Three weeks ago I wrote an update and was cautiously optimistic about my progress and prospects. Since then, I've felt, all the time, like the moments of feeling good that I enjoyed early in the treatment. That fine walking now lasts two to three weeks instead of two or three minutes or hours. I've seen improvements in all of my symptoms.

Golf season has started again, and I am finding my strength and stamina to be improved over last year in a measurable way. I am able to do much more in a day now and I smile, laugh and dance much more easily than I used to. Life is getting good again and I have received many compliments from others who have noticed my progress. Thanks for that, especially to Jan and Dan.

I really believe, that there is something behind this, as do many others. I have been in contact with at least six people in Canada, who are currently following this regime. One person, in Langley, and another person, in Nelson, are slightly behind me in length of treatment, but both are reporting progress. I will endeavour to collect their stories for my next update.

Colin
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July 05 update

Postby Notdoneyet » Mon Jul 04, 2005 5:02 am

I have now been on my version of the Wheldon antibiotic regime for the elimination of chlamydia pneumoniae and multiple sclerosis for over eight months, currently taking rifampin, doxycycline and metronidazole. Despite some problems. I feel I am progressing very well.

If my walking, strength and endurance hadn't been improving greatly over the last two months, it would have been hard to believe I'm still getting better. In the interior of British Columbia, we've had a fairly wet spring and early summer, but every time the sun comes out it warms up quickly. The humidity and the temperature swings have combined to evoke intense headaches which can last anywhere from twenty minutes to four hours. The headache usually subsides when my body cools off. It is one of the worst parts of my MS experience, so far, but fortunately it seems to be a seasonal thing. For the previous nine months, I had been relatively headache free and things usually get worse before they get better, right?.

The headaches would be a lot harder to take if I wasn't feeling so much better otherwise. I'm starting to feel a little guilty sometimes about using my handicapped parking pass. I remember reading a post of Sarah's about how nice it was to step lightly, not stomp around and thinking how wonderful that would be. Well, I have now been there!

I recently went on a two week, three thousand mile holiday with stops in Calgary, Winnipeg and Thunder Bay. I attended a family wedding, where I danced more than I had in years, played golf at some of my old haunts and saw some old friends. I made it through the airports without a cane, but was wishing I had brought it because they treat you so much nicer. I haven't been attending the gym as regularly as usual and don't seem to be missing it as much as I normally would.

While leaving a friend's place in Calgary, I unknowingly walked off a step, thinking it was level. During recent years that would have meant a sure thing, face plant, but this time I was able to catch my balance and remain standing. I haven't fallen for over two months and have no new scrapes or bruises. Also, I've been catching tossed, golf balls sometimes.

I still have occasional leg spasms, but they are not as pervasive as before. I may not ever run again, but I've been trying and I am walking a lot faster. The tingling that I previously felt throughout my body is now present only in the palms of my hands and in the base of my feet. I think I would say I've eliminated the bacteria if the tingling disappears completely and it does seem to improve after every metronidazole hit. Thanks to Daunted's reassurances, I am now taking metronidazole for seven day pulses with two weeks in between.

My friend, Phil, started following the same regime as I've been following shortly after I did. While he has not walked out of his wheelchair yet, Phil is mentally sharper, looks much healthier and feels he is better able to manage his waste elimination. He is able to do more things for himself and even stood up unaided the other day. He's not much of a writer though and I don't wish to put too many words in his mouth. Sufffice to say, Phil feels he is improving.
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Postby SarahLonglands » Mon Jul 04, 2005 5:36 am

Gosh, you do both seem to be doing so well!

I remember reading a post of Sarah's about how nice it was to step lightly, not stomp around and thinking how wonderful that would be. Well, I have now been there!

I'm afraid I am still no totally out of stomping: sometimes I do, sometimes I don't, but humidity makes it worse.

I unknowingly walked off a step, thinking it was level. During recent years that would have meant a sure thing, face plant, but this time I was able to catch my balance and remain standing. I haven't fallen for over two months and have no new scrapes or bruises.

Yes, I had the awful habit of walking along a kerb, missing by balance and falling down hard. On my knees and wrists, though, never on my face, in some attempt at retaining a moderation of decorum. Like you, I am now getting a dab hand at not falling over: I sometimes turn round too quickly, topple sideways but manage to stay upright. But as for seven day pulses of metronidizole, I couldn't, so well done with that! :wink:

Sarah
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August update

Postby Notdoneyet » Tue Aug 30, 2005 11:10 am

I haven't written in a while, this time because I've been having such a fantastic summer. In the last two years that I've been playing golf, I haven't had anywhere near the energy that I've had this year. I'm playing the best golf of my life, so I've been playing at least five days a week, not wanting it to end. Saturdays I work. I operate a mobile DJ service and summer is my busiest season, as I have a wedding to play at every week.

After 10 months on the Wheldon regime, my stamina has improved greatly. Last year after a round of golf, I could barely walk and had to have immediate rest for two hours afterwards. I would walk poorly the rest of the day, but the next morning I was ready to play again. I got a little stronger throughout the week and by Friday, I was at my peak. However, after a two day break, I had to start all over again and Mondays I often had trouble finishing.

This year has been different. There isn't that much difference between Monday and Friday now and I have been shooting scores in the eighties with some regularity. Golf isn't entirely a physical game, but balance plays a huge part. One day, I played 36 holes, (two games of golf), in succession! Another time I played at 6am and in the afternoon had a DJ function for four hours. I wouldn't have dreamed of doing that at any time in the last five years. I used to hire someone to help me set up my DJ equipment, but in most cases now, I can manage it by myself.

When I saw my neurologist in January, she said that I was holding my own, but I wasn't getting any better. I visited her again in July, after playing 18 holes of golf, and she didn't say I was getting better, but asked me to come in again in another six months, so she could see how my treatment was coming along. She did note that my optic nerves were now a grey colour, where before they had been quite inflamed.

This past weekend, I met the CEO of our provincial MS Society. He is not really a medical person, but as a former Olympic athlete, he is an excellent motivator and has expertise in setting goals and accomplishing them. He was impressed with my golf game and also impressed with my stories of the antibiotic treatment. I've been asked to write an article for publication in the British Columbia division newsletter.

The debilitating headaches I experienced in June subsided in July, with the humidity, so life is good. :D
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Postby mrhodes40 » Wed Aug 31, 2005 7:26 pm

Wow more good news. Thank you for the lovely post and the many ways you can tell you are better. This give s a good picture.

Thank you for posting
Marie
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Re: August update

Postby Melody » Thu Sep 01, 2005 3:32 am

Notdoneyet wrote:
She did note that my optic nerves were now a grey colour, where before they had been quite inflamed.




Was wondering what type of test she did to note your optic nerves had changed from inflamed to a grey color. Glad to hear you are improving and playing golf again. We gave it up as hubby has a hard time seeing the ball and he says it isn't much fun if you can't find the ball. :lol: He has been noting some improvement in his eye as well this summer and we have an appointment on October 4th at Sunnybrook so I'd like to get them to check that out.
John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX::Dr. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.
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