Also getting better on antibiotic regime

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

Postby Notdoneyet » Thu Sep 01, 2005 12:49 pm

Marie and Melody,
Thanks for your responses. Melody, I recently had tests done by an optometrist and the field tests he performed did not show improvement. He did, however, note that on visual inspection the nerves showed less inflammation. The neurologist agreed with the optometrist on visual inspection, as well. In 1998, I woke up one morning and was completely blind in my left eye. It recovered slowly over the next six months or so , then reached a point where, with my vision around 60%, it didn't improve further. However, since starting treatment it seems to be better, maybe 75%. Just today, I shut my right eye and, while it is not perfect, I could swear things are brighter, clearer and that I have a fuller field of vision. Driving with just my left eye is possible now, if a little bit more dangerous. Maybe my measuring instruments are more sensitive than theirs.

Marie, Thanks for your post on another thread about CPn Help.org. It could be a useful place for someone to start their own recovery. Some of the information from Vanderbilt on diet made me cringe a bit. I'm afraid I've been treating myself to too many ice cream cones, cokes and enjoying the great harvest of fruit we've had in British Columbia this year.

I have been diagnosed with MS for over 20 years. In the last seven, before starting antibiotics, I was desperately trying to hang onto my walking ability, mostly through increased exercise. If I stop exercising I still fall into a bad way. No doubt I have received some permanent damage. I considered myself to be on my last legs when I started antibiotic treatment in May, 2004 (minocycline). and was still using a cane when I started the Wheldon regime in October, 2004. I am now walking well for short distances and haven't used a cane for over 9 months, except to prop open the window. I haven't done any measuring lately, but will start again on the treadmill when golf season ends.

Now that I'm getting close to a year on the treatment and still feeling some tingling in my extremities and the occasional spasm when at rest(RLS), I had imagined that the tingling might all go away. I'm wondering when I'll know it's time to start backing off to an intermittent schedule. I don't feel all better yet, but I realize that I might not, either. When is it done? Maybe Sarah can help here.

Colin
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Postby Melody » Thu Sep 01, 2005 1:18 pm

Omega 3 as well as turmeric we believe have totally stopped hubby's restless leg syndrome which he has had all of his life. It is gone as of June of this year first time ever. Diet is likely major important even with the antibiotics. Diet will likely treat the cause and the antibiotics can treat the symptoms. Sort of a win win situation. It's ideal to get to the point where you know your own body and it's limitations. Hubby's optic neuritis took out one eye totally but this summer he is seeing shapes and can distinguish people. Since his optic neuritis was Feb 1998 we did not expect that. As to exercise we are martial arts buffs so hubby is building a house and putting in 14 hour days and I put in around 10-12 hours. Luckily the house is in my back yard for brother and the 4 kids as I( can still have some home time. Last year we could hardy keep him awake for 6 hours a day. We are unsure what exactly is going on but it is all positive. We are going to our MS specialist as the optometrist really isn't of much help. I will get Dr. Lee to check out his eye carefully. Thanks and good luck with your regime. We are all so different we must all choose the course that best suits each one. :wink:
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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Postby Notdoneyet » Thu Sep 01, 2005 1:41 pm

Hi Melody,
I remember being sixteen and my leg would shake by itself with no effort on my part. I could stop it and usually did. My Ukrainian barber said her Nana (Grandmother from the old country) would tell people to stop it as it meant something bad in the future (healthwise). I was dxd at 26.
I'll try to be better with my diet and I'm taking Omega3, but will shop for turmeric. What dosage?
Colin
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Postby Melody » Thu Sep 01, 2005 2:24 pm

Turmeric you must go to the East Indian district and the yellowier the better. We use 2 TBS per day per household of 4 so you need 1/2 to 3/4 TBS per day. It is awesome stuff. Fish we eat 3-5 servings a week that is cold water fish by the way. We actually push it 5-7 but I won't recommend that due to mercury toxins. I count on turmeric to cleanse the liver but that is my OPINION so do not chance it without a thorough study. Actually I've always told hubby something was terribly wrong as people can't move that much. The(RLS) drove me nuts for years until we found the reason. Allergies was another big one for me. I remember telling hubby that it was all in his head. By the way over the years we managed to get a handle on his seasonal due to vitamin C as well as exposure on an off season as well as diet. He no longer gets those. Once again know your body and work with it. In the end we will heal ourselves don't you think :?: :?: :?:
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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Postby Melody » Fri Sep 02, 2005 3:07 am

Well spoke to soooooooooooon. Hubby is allergic to pine trees as well as all the evergreens. Which normally we steer clear of. While building the house in the back we have started to cut lumber and damn if he isn't having a reaction to the wood. The point here is the restless leg syndrome was back last night. Will try to get the allergies under control with extra vitamin C and let you know if the RLS stops. :D I've never thought of the RLS connected to allergies but it is possible as we have removed all intolerances as well as allergens from hubby's diet back in April.
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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Postby Anecdote » Fri Sep 02, 2005 5:43 am

Now that I'm getting close to a year on the treatment and still feeling some tingling in my extremities and the occasional spasm when at rest(RLS), I had imagined that the tingling might all go away. I'm wondering when I'll know it's time to start backing off to an intermittent schedule. I don't feel all better yet, but I realize that I might not, either. When is it done? Maybe Sarah can help here.

Hi Colin,
Even now, two years into treatment and nearly a year on intermittent treatment, I still get some tingling in the extremities. I used to get spasms when at rest most of the time, but now very rarely and normally when I have overtired myself. What I want to say here is that recovery from deficits takes a long time: the longer you have had the deficits the longer it takes to recover. I doubt in all honesty whether I will ever be able to hill-walk 25 miles in one day or cycle eighty miles in similarly hard terrain. But who knows? :?

The clearing of endotoxins from your system can certainly cause tingling in the extremities, even a kind of numbness up to the knees, but this tends to be diurnal. Have you noticed that? I think the best idea would be for you to write to David again and ask him. I know that Stratton was surprised at how early I went onto intermittent therapy, but because I had no worsening after doing so, it must have been right for me. Everyone is different, but you have done amazingly well. I am now extending the periods between my booster doses from two months to three, eventually longer. I am still improving, but I am also working at it, as are you.

Melody, you are right about turmeric. I find it also very restful on the stomach and also on the mind. We are lucky in Bedford because there are many shops run by Bangladeshis, Sikhs and so on. Moving on a bit, I used to be enormously allergic to the oil and resin from pine trees. I couldn't use turpentine as a paint medium. All this seems now to have gone. Strange. :o
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Notdoneyet » Sat Sep 03, 2005 1:03 pm

Thanks for the reply, Sarah. I feel as though I could still have some recovering to do, but I was asking out of curiosity rather than need. I also felt that this was a question which hadn't been asked on this website as yet. I guess the question is best discusssed individually with your doctor, or in my case, David. I'll be in touch with him in a month or two.

The tingling that I'm speaking of is really the tingling that was one of my only "left behind" symptoms from my first full blown exacerbation over twenty years ago. Over time, It had taken over my whole body, but has receded to the extremities during antibiotic treatment.

Colin
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Postby Notdoneyet » Thu Nov 10, 2005 1:51 am

Hi everyone. I haven't posted for a while, although I've been monitoring most days. It's good to see so many new people attempting to reclaim their lives with the help of this site and its contributing members. Thank you all for your support.

I have been faithfully following the Wheldon regime for over a year now and am continuing to improve. I haven't had anything approaching an exacerbation in that time and the slow advance of MS has changed to the slow recovery of physical abilities. I've gone over a month without RLS type spasms, but every time I announce them gone there is a short-lived return. My walking continues to improve as does my balance.

Marie, I can now take upwards of fifty steps on my treadmill, no hands, whereas a year ago I could only manage one or two, if any at all. I can usually walk fifteen paces or so carrying a near full,glass of water without spilling, whereas one year ago there was water flying all over the place. What were once fleeting moments of equilibrium and better gait early in the treatment, are now the norm. The most important change of all has been in my attitude. I am starting to live life and have positive dreams for the future again.

I don't think I have killed all of the bacteria yet, as I still feel a little sharper during and shortly after hits of metronidazole. However, the burning and itching that I felt on my lower back since starting the antibiotics has mostly disappeared. I am a little unsure, but I have decided to continue the full treatment until at least the fifteen month mark because the treatment isn't that uncomfortable and I want to make sure that chlamydia pneumoniae is eliminated for good. I made this decision in conjunction with my new, local GP, who, by the way has turned out to be a pretty good egg.

I've been sharing my successes in a local MS newsletter and just last week received a letter from a seven month antibiotic veteran who was also feeling better. I will share her story with you in a separate post on this thread. My friend Phil is also feeling quite a bit better and has really noticed improvements to his vision, although he hasn't jumped out of his wheelchair yet. There have been a couple of people I know of that started the treatment and quit after their symptoms seemed to get worse. Their doctors probably didn't believe in the antibiotics and got skittish at the first sign of a problem.

The CEO of the provincial division of the MS Society of Canada had asked me, personally, to submit an article about my antibiotic success for the quarterly newsletter, which reaches thousands of MS patients across the province. He later reported that there wasn't room in the current issue, but the article would be printed in three months time if it was approved by the editorial committee. I wonder if they'd print it if I made an unrestricted educational grant to the society? I also wonder how many people with MS are on that editorial committee?

I just got notice of a free "Medical Research and Hope" seminar being held in Vancouver, BC on November 30th. The seminar features Dr. Wee Yong, from the University of Calgary, who along with Dr. Luanne Metz did the pioneering study which suggested that taking minocycline improved lesions as shown by MRI. It was news of that study that got me started on the road to recovery, so I guess I should be thankful to them. However, their research team was hired by Teva Neurosciences to see if minocycline plus Copaxone would work better than Copaxone alone, so I lost a little respect.

Yong "will present a brief introduction to the pathology of MS and an overview of current MS research, describing the science behind the exciting field of study in neuroprotection . . . The session will also feature a generous amount of time for your questions. Informative, practical and hopeful - come learn more and join us for a very worthwhile two hours. These sessions are offered free of charge and are being sponsored by an unrestricted education grant from Shared Solutions® and Teva Neuroscience."

I would love to attend that meeting so that I could ask if they considered that the minocycline might be acting as an antibiotic rather than as a neuroprotector, but several mountain ranges separate me from Vancouver and I can afford neither the time nor the airfare to go.
Last edited by Notdoneyet on Thu Nov 10, 2005 10:29 am, edited 1 time in total.
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another story

Postby Notdoneyet » Thu Nov 10, 2005 1:57 am

This is a story from a person without internet access:


I was diagnosed with relapsing remitting MS in 1995 and then two years later, my MS changed to secondary progressive, maybe because after my initial hospitalization, I refused all drugs. I decided to go the diet, supplements and exercise route. My choice. I've found working with people with MS, we have a stubborn streak! All drugs that were offered to me at the time, had side effects and made no sense to me. I don't think there's any new drugs without side effects. Seems to be the nature of pharmaceuticals.

So, I was surprised to be starting David Wheldon's treatment after reading of your progress in the West Kootenay Contact, going online to find out more details, and then, of course, going to my doctor.

At first I got worse, it was like opening the door to MS and saying, "Come on in," I had to take a few breaks and make some adjustments to my supplements before carrying on. I had begun this treatment at the end of March, taking the first two antibiotics, Rifampin and Doxycycline, with my version of the supplements (more than what David Wheldon calls for). It wasn't until the end of July when my body would accept the third antibiotic, the added metronidazole. At first, only one every 14 days. Now, I'm on a 19 day cycle, taking ' the zole," as you referred to the third antibiotic, for 5 days at the end of that cycle.

It's been 7 months since I began the treatment. I have a better sense of balance and I can see all the work I have to do to improve my gains. I have left my canes and staffs in the old. large milk jug on the porch, just in case!

I have a clarity of thought and perception that returned to me around the end of August, when I felt as though a cloud lifted from my mind. I also have not had an exacerbation since I began this treatment, despite travelling more than usual, experiencing the summer heat, and generally doing way more things than has been common for me to do in quite a number of years.

The last exacerbation I did have, back in February, was what got me looking with interest at this David Wheldon treatment as a possibility because I could see that despite making a few small gains, I was getting worse overall. More experienced with handling exacerbations, but I wanted to stop the whole thing if that was possible.

I do not think the organism is chlamydia pneumoniae but another mystery organism that is susceptible to the antibiotics, the way David Wheldon explains.

I will stick with this treatment for the recommended year. I believe it is stopping my MS symptoms.

I have been damaged from having this disease for many years and I don't know how much I'll recover. I'm awfully glad that I feel it will end. It is the MS way to always begin again and again, but for whatever reason, this time it feels different. I thank you for letting us know of this treatment and for inspiring us. $3600 per year is a lot cheaper than anything the MS Society has offered us so far. Antibiotics are still pharmaceuticals, but they're pretty benign and I feel as though they're working for me. Thank you, Colin.

Linda,

PS: Feel free to share this
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Postby mrhodes40 » Sun Nov 13, 2005 4:45 pm

"Marie, I can now take upwards of fifty steps on my treadmill, no hands, whereas a year ago I could only manage one or two, if any at all" end quote Colin

That's great! I thank you for making a measurable post. We are not a "real study" but quantifying the improvement is good for everyone. It is great to hear of your overall gains. We will hear more form you as you work on getting more improvement, eh?

No restless legs?? Wow, I can't wait. Thank you for posting your experience and Linda's too.
Marie
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Postby Notdoneyet » Tue Apr 11, 2006 11:50 pm

I haven't posted for a while , but I've been plugging along and am now on my 23rd month of antibiotic treatment, 18 on the full Wheldon regime and 5 on minocycline only.

I haven't been posting here , but am beating the drum on a local level. One person, following my lead, has had a partial recovery on antibiotics for over a year and others in my local MS Society chapter have been asking for something to give to their doctors. Of course, I refer them to the Wheldon paper at http://www.davidwheldon.co.uk/ms-treatment.html.

I don't have any numbers to indicate how much better I am, but a very notable thing happened to me today. I have just started golfing again (Springtime in the Rockies) and today, golfed with a woman who played with me last year, when I was, in my mind , doing much better. Following our round today, she gave me a big hug and told me that I was looking so much better than I had last year . . . much more stable. Last year she kept feeling a need to prop me up.

I am starting to feel the same when doing metronidazole as when I'm not, but am still rather afraid to quit the regime. Does anyone have any ideas? Maybe a 21 day metronidazole pulse is in order. I will consult my GP, but I consider any advice I get here to be of higher value.
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Postby CureOrBust » Wed Apr 12, 2006 3:30 am

to state the obvious, david wheldon appears to be quite open to reply to emails (address somewhere on his site). I think an opinion from someone with his experience of treating many MS patients would be invaluable, and certainly better than anything i could tell you.
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Postby Anecdote » Wed Apr 12, 2006 3:36 am

Hello Colin, that's great news! Much better to get a big hug from your golfing partner because you look so much better than constantly feeling that she needed to prop you up! This is much more important than EDSS numbers and so on. :D

I felt the same when on metronidizole as when not before the first year was up, apart from a bit more fatigue and depression which most people get with it all the time. After just over a year I stopped taking antibiotics full-time and moved to taking them for two weeks every two months or so, with five days of metronidizole added at the end of the two weeks. I feel no difference in doing this between when I am taking antibiotics and when not and am still gaining strength and staying power bit by bit. You might be wise to do this because it guards against any reinfection, which wouldn't take hold in chronic mode in that space of time. I should write to David and ask him what he thinks. He has a new email address at the bottom of his first page: http://www.davidwheldon.co.uk/ms-treatment.html

Morning CureO, how are you today? :?

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Notdoneyet » Wed Apr 12, 2006 7:47 am

I wrote to David six months ago on this same subject and didn't receive a reply. Perhaps I just got lost in the shuffle. In any case, I still noticed a big difference between metro pulses then, so I kept right on going. I recently took four weeks between metronidazole hits and didn't notice any depreciation in ability. I will write David again. Thanks to Sarah and CureO for your suggestions.

Colin
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the best game

Postby robbie » Wed Apr 12, 2006 10:34 am

I golfed for 7 years with my ms but not anymore , enjoy it while you can.
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