Always an Anecdote

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

Postby SarahLonglands » Sat Mar 31, 2007 7:25 am

As David noticed and put in the update section of his site:
http://www.davidwheldon.co.uk/updates.html
after three and a half years since starting antibiotic treatment for my then very aggressive SPMS, subtle improvements are continuing even in the periods when I am not taking anything, as now.

Update, 24th March 2007

Subtle improvements continue. The latest is the disappearance of motor fatigue in the right hand; this had been evidenced by a decline in strength during sustained extention of the fingers: extention could not be maintained. No fatigue is now apparent. (Motor fatigue is common in progressive MS, and, in the natural history of the disease, recovery from it is rare.)
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 » Sun Apr 01, 2007 7:58 am

Congrats Sarah,

Good to hear that you're still showing improvement. Although I'm still taking antibiotics, for almost three years now, my changes have also moved on to become more subtle. The first nine months to a year were the most dramatic and things hsve slowed since. A wonderful side effect is that my skin has become very soft and smooth and I have heard remarks lately about my improved complexion. That's due to the doxycycline, no doubt.

Colin
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Postby SarahLonglands » Sun Apr 01, 2007 11:10 am

Hi Colin, same time scale with me, I think. What pleases me most of all, though, always having had a soft, smooth complexion :wink: , is that I haven't been taking any antibiotics now for probably more than three months (I loose count) and have had no return of symptoms and I still seem to be slowly improving.

I do wish I could run, though.

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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I beat it!!

Postby SarahLonglands » Tue Aug 28, 2007 8:19 am

As you can see from my signature, I have finished taking antibiotics after four years, one year full-time and three years intermittent. I have never had any return of symptoms in the gradually lengthening periods when I haven't been taking them and in fact I have had no MS episode since starting, compared to the constant and rapid progression with the odd relapse thrown in for good measure before I started. I have been thinking about this since early June, when I last took any doxycycline and the rest. All the times between taking antibiotics I am still seeing subtle improvements, as though my own immune system has taken charge, so there seems very little reason to fill myself up with antibiotics without good reason. David had already finished his treatment but he left it up to me to decide I was going to do the same. If he had thought it was a bad idea, as a microbiologist who has also trained in neuropathology, he would have stopped me.

It seems to be a fact that people with MS don't tend to have an enormous bacterial load compared to people with arterial disease or fibromyalgia, say: it just knows where to hide away to cause the most damage. I really had not experienced any reactions on taking metronidazole , other than depression, since about nine months into treatment. The biggest reaction was actually at about six months, just before my first follow up scan and just before starting rifampicin. All I experienced with that was the sudden lessening of the immunomodulation that I had with taking both doxicycline and roxithromycin. Before and throughout I never had raised blood pressure, sticky blood, altered thyroid levels, rheumaticky aches and pains or anything which many other people seem to experience.

Yet I till have an EDSS of two. So some tracts of myelin still need either to be rebuilt or a way round them found. That will take time, but it won't come any quicker by throwing antibiotics at the areas.

I think I will start a topic very soon, marking my post-abx improvements. This would seem to make sense because it might show to people that there is no reason to carry on, 365 days a year, until every tiny deficit is gone.

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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I beat it!!

Postby SarahLonglands » Tue Aug 28, 2007 8:19 am

As you can see from my signature, I have finished taking antibiotics after four years, one year full-time and three years intermittent. I have never had any return of symptoms in the gradually lengthening periods when I haven't been taking them and in fact I have had no MS episode since starting, compared to the constant and rapid progression with the odd relapse thrown in for good measure before I started. I have been thinking about this since early June, when I last took any doxycycline and the rest. All the times between taking antibiotics I am still seeing subtle improvements, as though my own immune system has taken charge, so there seems very little reason to fill myself up with antibiotics without good reason. David had already finished his treatment but he left it up to me to decide I was going to do the same. If he had thought it was a bad idea, as a microbiologist who has also trained in neuropathology, he would have stopped me.

It seems to be a fact that people with MS don't tend to have an enormous bacterial load compared to people with arterial disease or fibromyalgia, say: it just knows where to hide away to cause the most damage. I really had not experienced any reactions on taking metronidazole , other than depression, since about nine months into treatment. The biggest reaction was actually at about six months, just before my first follow up scan and just before starting rifampicin. All I experienced with that was the sudden lessening of the immunomodulation that I had with taking both doxicycline and roxithromycin. Before and throughout I never had raised blood pressure, sticky blood, altered thyroid levels, rheumaticky aches and pains or anything which many other people seem to experience.

Yet I till have an EDSS of two. So some tracts of myelin still need either to be rebuilt or a way round them found. That will take time, but it won't come any quicker by throwing antibiotics at the areas.

I think I will start a topic very soon, marking my post-abx improvements. This would seem to make sense because it might show to people that there is no reason to carry on, 365 days a year, until every tiny deficit is gone.

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 robbie » Tue Aug 28, 2007 9:05 am

Hi Sarah you have to agree that the abx is much less invasive and safer than most of the other drugs currently used so i think everyone should try this route before these other drugs, if antibotics work than all the years and years of research are on the wrong path of thinking so thats a waste and leaves future treatments futile. Is this the right way to think, other people please tell us your opinion. Congratulations Sarah you really seem to have beat it. I don't know about any one else but our doctors should give us this course of treatment without us trying to find a doc that will support our decision of treatment.
Had ms for over 19 years now.
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Postby SarahLonglands » Tue Aug 28, 2007 10:19 am

Thanks, Robbie! That's what I think as well. I must say that when I started I didn't think it would work, but I was wrong. I found out about a week ago that my neurologist had a word with David and said that he had better make "arrangements" for me, since I was going downhill so fast. He never looked at my repeat scans and has yet to send a patient with progressive MS across the hospital courtyard to see David. He doesn't even have to believe that it will work, but with progressive people, what else do they have?

I keep thinking that I should really send him one of my prints, done since recovery, signed and with a neat, handwritten note. I've been thinking abut this for over a year, but can't quite bring myself to do so. That is really silly, isn't it, because, who knows, it might make him sit up and take notice. What do you think?

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 robbie » Tue Aug 28, 2007 11:11 am

What do you think?

What do you think and what does everyone else think about what i said. For antibiotics to work on you and so many others is research on the wrong path?
Had ms for over 19 years now.
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Postby SarahLonglands » Tue Aug 28, 2007 11:35 am

But I did say this:
Thanks, Robbie! That's what I think as well.


But yes, I think MS is caused in susceptible people by a Cpn infection, therefore the quickest and cheapest way to treat it is to treat it as an infection. Its not easy, but then treating tuberculosis is also an arduous path, boyh for doctor and patient.

The main trouble is that medicine is so compartmentalized these days: neurologists know about neurology, microbiologists about germs, chest physicians about chests and so on and so forth. Very few people seem capable of thinking outside their box. Its a great shame.
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 robbie » Tue Aug 28, 2007 12:59 pm

Its a great shame.

It's more than that but i just have the words..
Had ms for over 19 years now.
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Postby CureOrBust » Wed Aug 29, 2007 2:50 am

robbie wrote:and what does everyone else think about what i said. For antibiotics to work on you and so many others is research on the wrong path?
the abx's haven't worked for everybody, but i definitely agree with you on giving them a trial.
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Minocycline study

Postby Notdoneyet » Wed Aug 29, 2007 9:39 am

Hi Sarah and all,

It has been recently announced in Canada that the MS Society of Canada is funding another study by Dr. Luanne Metz of the University of Calgary and the Foothills Hospital MS Clinic. Dr. Metz did a small test of oral Minocycline in MS patients, which showed MRI improvements and then was contracted by Teva Neurosciences to do a study involving Copaxone and Minocycline. I haven't heard of any results, but they must have been promising.

The new study was announced in a recent MSSC bulletin:

A randomized, controlled trial of minocycline in Clinically Isolated Syndrome (CIS)
For many people, CIS - the first onset of an MS-like symptom - represents the earliest stage of their living with MS. Researchers believe a new teatment option for this phase might be minocycline, a well tolerated, oral, acne medication that has shown anti-inflammatory properties in animal models of MS. The study will involve 200 participants from across Canada and Dr. Luanne Metz from the University of Calgary is the lead investigator.


Notice that minocycline is called an acne medcation and not an antibiotic. Dr Metz is aware of the Vanderbilt studies and the problems that they have had with their research and told me she wouldn't go down that path.

On another note, I have stoped taking antibiotics for about five weeks now. I'll report on that in my own thread, soon.

Colin
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Postby SarahLonglands » Wed Aug 29, 2007 9:59 am

Ah, you as well! So I have company.

I wasn't aware that Vanderbilt had any problems with their research: more finding people to do the trials and getting finance to run them in the first place. I would be interested to know what problems Dr Metz thinks they had. Misinformation from Teva perhaps?

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 gwa » Wed Aug 29, 2007 11:02 am

Teva is behind some other trials such as the estriol trial going on now at UCLA. I think Teva is partnering with any trial it can find in order to keep its market share of Copaxone from slipping away.

I was dumbfounded when I found out that the estriol trial would be combined with Copaxone. I even emailed the PR guy at UCLA and asked why part of the trial was not just the estriol.

His response was that the researchers wanted to keep people on a med during the trial that had been proven to work in case the estriol didn't work.

Bah Humbug. I know that Teva is behind the estriol trial and it wants to be able to sell its Copaxone with the estriol as a combo therapy. My guess is that it is footing the bill. I could be wrong here, but that is my gut feeling. There are too many "combo" trials going on now that are probably unnecessary.

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Postby Notdoneyet » Wed Aug 29, 2007 1:00 pm

Sarah,

The problems with finding and keeping recruits, as you spoke of, were what she wanted to avoid. Misdirected or not, minocycline as a first response to MS is an excellent start. It's something the MS Society could buy into. And since no pharmceutical company is going to fund any research, it's great that the Society has.

Without admitting that the antibiotic properties have anything to do with anything, they have started down the road. It's an easily manageable study, so it should show results Think of the benefit to those currently using interferons as a first defence. It's a good thing, I think.

I plan on sending an email to Dr. Metz, congratulating her and asking her to keep an open mind to CPn infection. She responded to my last emails.

Colin
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