Also getting better on antibiotic regime

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Also getting better on antibiotic regime

Postby Notdoneyet » Fri Dec 24, 2004 4:05 pm

Hi. This is my first post, although I've been listening in for a while.
I started taking minocycline in May 2004 after reading about the Metz & Yong study results in Canada. The minocycline resulted in some limited, but immediate improvements. When researching the reasons antibiotics had an effect I came across a link to David Wheldon's website about Chlamydia pneumoniae on thisisms.com.

I've been diagnosed with RRMS for over 20 years and had graduated to a secondary progressive diagnosis. Walking has been difficult for the past five years or so, but I had been holding my own by increasing my exercise regimen, until last May when I last had an exacerbation. That attack really affected my balance and produced a deep numbness in my legs, particularly my left foot. I fondly refer to this condition as "hot dog foot." The "hot dog foot" disappeared shortly after starting minocycline.

David Wheldon's paper made a lot of sense and the story of Sarah's recovery was gripping. I decide to try it, but it took until the end of October to get started.

Almost immediately, my balance returned to pre-attack (May 2004) status. I have now survived two pulses of metronidazole and things continue to improve. The heaviness I have felt in my legs for years is subsiding, my walking continues to improve and l'hermittes sign has all but disappeared. Spasticity in my legs has diminished and I believe I may run again. I have no objective proof as yet, but even my eyesight, which has been affected by optic neuritis, seems to be improving.

I have been hesitant to write this, wanting to make sure the changes would last and there have been a few ups and downs, but I do believe I am on my way to recovery. I have an appointment with my neurologist Jan 20 and can't wait to see her face when she sees I don't hang onto walls any more.

Thank you both Sarah and David Wheldon for your willingness to share your findings.
:D
Last edited by Notdoneyet on Mon Dec 27, 2004 11:57 am, edited 1 time in total.
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Postby Anecdote » Mon Dec 27, 2004 6:26 am

.
Thankyou for those kind words. I have come under so much criticism from some quarters over the last few months that I sometimes wonder why I bothered. Reports like this and others on this site make me see that it is definately worthwhile. Please keep us posted on further developments, especially your neurologist's thoughts. :wink:

Sarah
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Also getting better on antibiotic regime

Postby Notdoneyet » Mon Dec 27, 2004 3:33 pm

Dear Sarah,

MS is a problem that may not be solved by multi-million dollar studies. A cure for MS might be found on a case by case, doctor by doctor basis. It's easy to ignore one person who claims to have a cure, but can you ignore 100? or 1,000?

Hundreds, perhaps even thousands of people are reading your postings and there will be many more reports of people trying antibiotics for MS therapy. I'm posting updates on my condition in a monthly newsletter going to more than 100 MS people. For every one that reports there will be another 10 or even 100 who don't.

You and David are already responsible for a tremendous improvement in my life and even if things don't get any better for me, I've probably added five years to my golfing life. That's better results than any MS treatment I've ever received. Betaseron made me sick and killed my skin. Perhaps most importantly, you've given me a lot of hope, where there was only a little.

So Sarah, please don't doubt that you are performing a great service to humanity, and you are both doing it so selflessly. I have never emailed David with a question and he hasn't gotten back to me first thing, the next business day. Hopefully one day you will both receive the credit you deserve for your outstanding work.

Colin

PS: If I have anywhere near a full recovery, I'll be LOUD!


:D
Last edited by Notdoneyet on Tue Dec 28, 2004 12:47 pm, edited 1 time in total.
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Postby Arron » Tue Dec 28, 2004 12:54 am

Thank you so much, Colin, for sharing your experience with antibiotic treatment.

And of course, we echo your thoughts on Sarah and David's contributions: Information is power, and MS patients should be given full disclosure to the various treatment opportunities available such that they can discuss with their doctors what treatment might be best for their individual diagnosis. It is always our hope that this site provides just such a forum.

Wishing you continued improvements,
-a
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Also getting better on antibiotic regime

Postby Notdoneyet » Sat Jan 22, 2005 4:14 pm

Since my last update, about a month ago, I have experienced both good and bad periods, but mostly good. I have now been on David Wheldon’s treatment for about three months and there seems to be a pattern emerging. I feel best about three or four days after a metronidazole pulse and then my condition slowly deteriorates until the next metro hit, when I have another great leap forward. After the last pulse, I was jumping up and down - literally.

Most symptoms appear to be slowly dissipating, as previously described. My worst days now are still better than my best days used to be and my best days . . . wow! However, weakness on the right side of my body, particularly in my leg is still a problem and there has been little or no resolution in that area.

My GP just announced he is quitting private practice, so I hope I will easily find someone willing to prescribe the required antibiotics. I saw the young doctor who is taking over my account and after saying he didn’t know much about MS, agreed to read David’s paper and will let me know what he thinks on my next visit. Somewhat encouraging that he agreed to look at it.

The other day, I had an appointment with my neurologist. Unfortunately, I have been experiencing some spasticity problems and was not walking as smoothly as I had been only a week before. After a physical examination, in which she noted my spasticity problems, she concluded objectively that I had held my own since my last visit six months ago. Most of my symptoms which have shown improvement cannot be measured objectively and can only be put down to “Colin says”. A scientist can’t make a judgement based on that. The experience has dampened my enthusiasm, but only a little.

The neurologist would not prescribe antibiotics for me. She's not a doctor of alternative therapies. Leave that to the GP’s. She agreed, however, to see me again in six months. I must commend her for being so professional with me despite the fact that we live in a small town and I must be making her work a little more difficult. There have been other inquiries about antibiotic treatment. Before my next appointment, I will have my eyes re-examined. I had full field tests just before I started taking minocycline last May. We'll see if perceived improvements in vision are real, then.

The up and down nature of this recovery is a little unnerving, so I look forward to the start of a metronidazole pulse next week. I have tolerated the metronidazole pretty well and will try to extend the pulse by a day or two this time. I am experiencing a few minor side effects, but they are easily offset by improvements in my condition. I have some pain in my legs, particularly when waking in the morning. I have been taking more naps and have a very itchy spot on my lower back, approximately over my kidneys.

Perhaps it has been mentioned on this site previously, but I ran across a website belonging to Bob Miller, who seems to have a wealth of information about the Vanderbilt studies. Can't hurt to post it again even if everyone else has seen it already. http://home.earthlink.net/~robert016/ms.htm

Colin :)
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Postby Anecdote » Sun Jan 23, 2005 4:44 am

.
Hello Colin,

Its rather annoying that your GP is retiring from private practice, but hopefully the chap taking over from him will see the sense of you being able to continue treatment. Surely if you have been receiving treatment from someone in the same practice he can't just refuse to carry on with it if you have been benefiting from it?

As for the neurologist, well, mine won't even see me. I suppose it is something for yours to say that you have held your own since the last visit.

The recovery certainly has an up and down nature, but in my experience the downs get gradually less and the ups get higher and higher.

As for the continuing weakness in your right leg, I still have a weakness on my right side, although it is gradually getting less. I have found that the best thing to do with building up the strength is to exercise 'little and often.' If I have been sitting in one position for too long, I kind of seize up, so do a few minutes exercise to correct this. Just before Christmas I bought something called an 'air-walker' which I have found very helpful. It exercises your legs without stomping up and down in addition to building up the strength in your arms.

http://www.epinions.com/Weslo_Air_Walker_Exercise_Equipment/display_~full_specs

I use it for five to ten minutes every couple of hours, mainly just resting my hands on the crossbar but when I use my arms as well, I feel a distinct difference in strength with the two sides of my body, making me feel rather lop-sided. So I have taken to starting just using my legs, swapping over to arms and legs, then swapping back. I must say, I am distinctly better at it than a month ago. I do pilates as well. You are a golfer, aren't you? Pilates or yoga would be very relaxing after a bout of that!

Sarah :wink:
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Postby Notdoneyet » Mon Jan 24, 2005 12:26 am

Hi Sarah,

Thanks for your reply. I suppose my recovery is quite on schedule and I am just being impatient. I want it all and I want it now.

I agree that I shouldn't have too much problem with getting abx. Although some of my improvements can't be seen, they are very real and have made a vast difference to me.

I exercise three times per week with weights, stretch and walk daily on my treadmill. I will try shortening the times and increasing frequency on the treadmill, but I enjoy extending the length of my walks, too. I walked a half kilometre today.

Colin
:)
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Also getting better on antibiotic regime

Postby Notdoneyet » Thu Feb 24, 2005 11:13 pm

I've now been on David Wheldon's antibiotic regime for about four months and I started taking 200mg Minocycline, daily, five months previous to that. I am curently in the middle of my fifth pulse of metronidazole.

I am finding that the metronidazole is really the straw that stirs the drink as far as my recovery is concerned. I usually have a large improvement when I'm "on the zole" and the good feeling is lasting longer and longer after successive doses. Early on in the treatment, I described my situation as moments of "normalcy" interrupting MS. This is the opposite of how the disease came on, with moments of MS interrupting "normalcy". I haven't had many new improvements, but the "normal" moments are getting longer and longer. By "normal" I don't mean full physical function, just a lot more stability and coordination than I have been used to. I can go unnoticed in many situations now, where a few months ago, one could easily see that something was terribly wrong with me as soon as I moved. Things are still kind of up and down and I am far from being all better, but I look forward to continued improvement.
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Postby Arron » Fri Feb 25, 2005 2:55 am

wonderful to hear! wishing you continued success (and updates! :))
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antibiotics

Postby sunnydelilah » Fri Feb 25, 2005 4:10 pm

I am a little puzzled that antibiotics help your MS. I use statins, Copaxone and antioxidants for my treatment. I am currently using antibiotics for a sinus infection and I can tell my immune system kicked up and then my nervous system. I have eleven days of torture to go to kill my sinus infection yet. It seems kind of straight forward that if you aggravate your immune system, my nervous system gets cranked. ?????
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david weldon

Postby ropingheeler » Fri Feb 25, 2005 4:59 pm

can someone please point me in the right direction to find david weldons treatment would really like to read more about this

notdoneyet if you dont mind helping me out thanks
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Postby Notdoneyet » Fri Feb 25, 2005 5:55 pm

Hi Sunnydelilah,

I'll leave it to some of the others to answer your question, but I suspect it is the infection, not the antibiotics, that has caused a flare up.

Ropingheeler, I've sent you an email, but I'll post the site here for others. It's http://www.davidwheldon.co.uk/ms_treatment.html

Colin

:)
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Antibiotics

Postby sunnydelilah » Fri Feb 25, 2005 9:34 pm

This is my second round of antibiotics. I am sure it is the antibiotics. I am not running a fever like during the first round. I just have congestion and want to make sure my sinus infection doesn't return. I still wonder how antibiotics fire up one's immune system, which aggravates one's nervous system will help eliminate MS symptoms. I would think some type of anti-inflammatory drug would be more helpful. I take Zocor and I know it works like an anti-inflammatory. I hope whatever you do does work for you.
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Postby Anecdote » Sat Feb 26, 2005 9:48 am

Hello Sunnydelilah,

I am the person who is responsible for all this discussion. My husband, David is a consultant medical microbiologist who found out that at Vanderbilt University they were trialling the treatment of MS as a disease set going in susceptible people by a chronic infection of chlamydia pneumoniae. This is a fairly recently discovered pathogen responsible for a lot of upper respiratory tract infection, low level pneumonias and much sinusitis. Many people whom David is treating either for MS, Chronic Fatigue or a number of other diseases set in train by a chronic CPn infection either developed adult onset asthma, like me, or are plagued by recurrent sinusitis.

I had a fairly benign MS for quite a number of years but then it started a rather rapid progression after a severe chest infection which led on to the adult onset asthma. When I started the treatment, I immediately became rather feverish and I remember standing on the stairs, listening to something David was saying, not taking it in and just saying, "I've got to go to bed, now!" Only about 9.00 in the evening. At this time I was only taking Doxycycline, but Roxithromycin was added later to avoid the build up of resistance.

If you read the link which Colin gives in the post above yours, you will see that it certainly worked for me, completely stopping the disease dead in its tracks.

It does sound to me as though you unwittingly started the regime with your first attempt to get rid of the sinusitis. You just need to take he antibiotics for longer. I am not taking anything else, apart from certain vitamin supplements, l-carnitine and alpha lipoic acid, the last two only recently added. All my lesions are either shrinking or have gone, and I have no new lesions at all, and this is with SPMS.

Sarah :)
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Antibiotics

Postby sunnydelilah » Sat Feb 26, 2005 2:08 pm

I know there are drugs which will help one overcome MS. I use statins and antioxidants. I am always fearful of antibiotics since they do turn up my immune system which aggravates my nervous system. I too had a long run (ten years) before the MS became aggressive. The next five years were not any fun. I started the statins three years ago and have made significant improvements. I am glad they (antibiotics) work for you as it gives me another avenue if the treatment I am using fails. I have used the ABC drugs for varying lengths of time and didn't have much success at stopping attacks.
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