What works

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Postby Loriyas » Thu Nov 29, 2007 10:31 am

I have to chime in here.

I have felt improvement with minocycline. Enough that it convinced me to take it further and start with the entire antibiotic protocol. But before I do that I made an appointment with the head of the MS clinic at Vanderbilt. I wanted to be seen by someone who treats MS patients this way, who was well respected in the field and has credibility. My appointment is Dec 17. I plan to post about the appointment when I return.

I think whatever direction someone takes it is the right direction for them. Since a cure hasn't been found and the current approved therapies aren't exactly the "best" for each patient, it falls upon the patient to find out what works for him/her. All each of us can do is try. Then report back to the rest of us about their experience so we can each make a decision for our own care.

Brock, you have seen improvement so there is no reason to stop what you are doing. There is also no reason not to continue to explore other avenues, whether it be the full antibiotic protocol or a completely different path.

I refuse to let this disease get me down without doing EVERYTHING I can. If one thing doesn't work, then you go on to something else. (But I will also say that one needs to give their treatment of choice time to work-miracles don't happen overnight).

What may work for one person may not work for another. Heck, this may end up being more than one disease, for all we know right now. Then we will all have different treatments. But until we know anything for sure all any of us can do is keep trying.

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Postby Rudi » Thu Nov 29, 2007 11:09 am

Hi Viper and Terry,

I've been taking abx for 7 months very early ms (I'm not even officially diagnosed yet).

I'm certain that antibiotics such as doxycycline and minocycline are anti-inflammatory and a good thing. The anti-inflammatory action of these drugs most probably reduces brain atrophy and disease progression too. It certainly seems logical.

Flagyl in my experience has been inflammatory. However I have researched the likelihood of a bacterial involvement in MS and it is possible that bacterial infection plays a role in the development and progression of MS. I'm not completely sold on the evidence but at this early stage I'm more than willing to roll the dice on this idea and continue with the flagyl.

I think the stories of miraculous recoveries on abx are somewhat misleading. I'm pretty sure that everyone with MS gets worse as time passes, it's simply the nature of the disease. For instance my vision is slightly worse than it was 7 months ago. However this does not mean that antibiotics such as minocycline are not a credible therapy. I don't think you really can expect to 'get better'.... If you do then fantastic. But essentially my whole plan is to do everything humanly possible and sensible to get worse as slowly as possible.

This includes omega 3 fats, antioxidants, various supplements, vitamin b12, avoiding stress... etc. Hopefully by doing all of these things I will slightly tip the balance towards slower progression.

It an absolutely awful knowing that despite changing your whole lifestyle you are still ultimately heading towards a horrible fate; but thats MS and the life we now face. So I guess you've just got to do your best with the information you have...

Good luck.
1st traceable symptoms July 2006 - realized I had MS November 2006
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Postby SarahLonglands » Thu Nov 29, 2007 12:29 pm

I haven't read any stories about miraculous recoveries on abx, in the way that aimspro was touted with people who were able to leap out of wheelchairs and suddenly walk miles.

My experience was one of stopping inexorable progression and then getting better rapidly at first, as my most recent symptoms were dealt with and then more slow improvements, lots of plateaux in between, but absolutely no progression of the disease.

Remember I had been living with the disease since I was 24, with secondary progressive disease for about five years before starting abx, so I know the difference between "getting worse as time passes" and "getting better." I wouldn't call this a miracle, though: I don't believe in miracles and I still can't run. But I do believe in solid research and evidence, and I also know that my MS has not progressed at all since finishing a four year course of abx last June. Being married to someone who trained in neuropathology as well as being a first class medical microbiologist gives me more confidence in saying this as I am with someone every day who watches me closely for signs of a reverse and is skilled enough to know. Also, of course, I have my sequential MRIs safely dated and stowed away.

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 » Thu Nov 29, 2007 12:45 pm

I haven't read any stories about miraculous recoveries on abx

In my situation a 7 to a 2 or even less on the EDSS which you have had Sarah is a miraculous recovery
It an absolutely awful knowing that despite changing your whole lifestyle you are still ultimately heading towards a horrible fate; but thats MS and the life we now face. So I guess you've just got to do your best with the information you have...

It's hard to say it any better than that.
Had ms for over 19 years now.
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Postby gwa » Thu Nov 29, 2007 12:52 pm

I have to agree with robbie about going from a 7 to a 2 as being a "miraculous" recovery.

In my books, that is indeed miraculous, especially for a disease that continues to progress in most patients.

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Postby viper498 » Thu Nov 29, 2007 1:33 pm

I would have to agree as well. That is rather extraordinary... Have you seen very many other people experience this same benefit?
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Postby Lyon » Thu Nov 29, 2007 3:00 pm

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Postby SarahLonglands » Thu Nov 29, 2007 4:01 pm

I still say that my recovery wasn't miraculous: although I had MS for nearly twenty years, I hadn't been progressive for more than five and for much of the time before, I seemed fitter than most of my friends. When my disease became so aggressively progressive I was suddenly plunged into a world new to me, but I was only a seven for a comparatively short time. That is why I pulled out of it so quickly. I still register as two and I can't run, although I used to be a cross country champion. I've got my mind back, though, and I can paint again and so I am grateful beyond anything whereas if I had carried on deteriorating at the speed I was in the end, I wouldn't be here now. Not everyone ends up like that by any means, but from my experience, you never can tell. That's not a miracle.

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 Lyon » Thu Nov 29, 2007 4:49 pm

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Postby sojourner » Thu Nov 29, 2007 9:30 pm

Hey Bob,

I think the story you speak of begins with the idea that the etiology of MS might be bacterial---surely this is not a new idea with Gabriel Steiner, Paul Le Gac, Lida Mattman and others proposing just that decades and decades ago, more recently Stratton and Wheldon.

The second chapter of the story begins once one feels there is some evidence that certain (largely difficult to treat) bacteria cause MS, then a longer course of antibiotics and combinations of abx become the treatment. I don't believe anyone ever just threw long term abx at MS....the rationale was always to treat a difficult infection---even really early on with Le Gac.

If one looks, there actually is a fair amount of research pointing toward an infectious cause to MS.

As far as miraculous goes---I don't characterize anyone's success on abx that way. It is a long slow slog, more of a two steps forward one back process. If it were indeed a miraculous cure there would surely be a lot more takers. Robbie is a great example of this conundrum. My husband was probably worse at three months into treatment than when he began.
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Postby Lyon » Fri Nov 30, 2007 7:21 am

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Postby SarahLonglands » Fri Nov 30, 2007 9:37 am

Hello Bob!

You said:
Some people have come to use the word "miracle" sarcastically to mean "impossible" or "yeah, right!" and I don't mean it that way.

As per #2 above, I'd disagree with you and say that your situation does qualify as a miracle.

A quirk about me is that I'm always as interested in the situations leading up to an event as I am the event itself. You or your husband are probably eminently qualified to answer a question I've had for a while, if you don't mind.

There must be a story behind the discovery of using long term antibiotics as a treatment for MS, but what is it? What made someone consider that there might be a benefit to a person with MS by using antibiotics far longer than you would ever normally see them used?


The story goes back to the discovery of chlamydia pneumoniae as a pathogen and the realisation that it caused far more than just walking pneumonia. This was near the end of the 1980s. The man who has done most research with this and its relationship t multiple sclerosis was Charles Stratton of Vanderbilt, who got Ram Sriram, one of the neurologists seriously interested. A good place to start finding out about this is here: http://www.davidwheldon.co.uk/ms-treatment.html There are lots of references which will lead you on to other things.

Research at Vanderbilt showed that a long-term treatment was needed to totally eradicate the pathogen: attempts at a quick fix with IV antibiotics either don't work or can cause to much agony for the patient. Fr instance, someone with meningococcal septicaemia needs treating very speedily, but can often end up dying from the too rapid die-off.

David was sure that I was suffering from an infection because when my disease became so aggressive, I looked frankly toxic, I was babbling, laughing inappropriately and not making sense. My neurologist knew that I was getting so rapidly worse that in his eyes, I was beyond hope, so he warned David to "make arrangements" for me. The arrangements that he made were to bring home a packet of doxycycline, after writing to, at first, Sriram on the Sunday and getting a reply back the same day.

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 Rudi » Fri Nov 30, 2007 10:22 am

Multiple sclerosis: an infectious syndrome involving Chlamydophila pneumoniae. Stratton CW, Wheldon DB.

Bob,

If you are interested in the evidence the above paper is worth a read.

I was particularly interested in Cpn causing vasculitis for I had numerous outbreaks of vasculitis visible in my left eye in the year preceding the development of my MS symptoms. I'm sure that vasculitis throughout the brain will soon be widely recognized as a hallmark of MS and the vascular input of the disease more widely recognized.

Rudi[/url]
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Postby mormiles » Fri Nov 30, 2007 10:58 am

Terry, My husband who has SPMS is on the Wheldon version of the Vanderbilt Combined Antibiotic Protocol. If his doctor pulled the plug on the protocol prematurely, we would find another doc for the continuation. If we couldn't find another prescriber, we would get the meds by hook or crook. I'm one who has thoroughly researched the evidence, and I am thoroughly convinced that it will help the majority of MSers.

That being said, I've also done enough general MS investigation to know that chronic Chlamydia pneumoniae infection is not THE only thing that causes MS. MS is multi-factorial, and among those factors are chronic infection with multiple microbes. My husband is a good case in point: he has chronic Chlamydia pneumoniae, Mycoplasma pneumoniae, Epstein-Barr virus, Cytomegalovirus, HHV-1, systemic candidiasis, and that's just the slate we know about. He also secretes little or no stomach acid to digest his food, he has a leaky gut, sensitivity to gluten and casein, severe zinc depletion, and elevated heavy metal accumulatons.

It would be terrific if one thing were THE cause of MS, but it's not simple and it is multi-faceted. The singular thinking that has limited the research community is at least partially to blame for the lack of THE cure for MS being found. I've hammered away at what might underlie the various problems that plague my husband and many MSers. What makes MSers vulnerable to chronic infections? What happens to cause the heavy metal accumulation? Why is the zinc depleted? Why the lack of stomach acid secretion? Why the leaky gut and food sensitivities? My investigations have turned up alot of answers, and we're addressing all of these problems.

Granted, not every MSer will have all these problems, but my personal opinion is that the majority of MSers do have Cpn infection. Treating it with the Vanderbilt protocol is the only effective way I know of to beat it. Beating Cpn will improve immune function, but if other infections have a strong grip on you, they need to be addressed too, as do gut and heavy metal issues. Expecting the antibiotic protocol to solve all the other problems is not reasonable. Another thing...though there might be some early improvements on the protocol, it's not designed to be a quick fix for MS. Also, while remyelination might be improved, the antibiotics will not repair permanently damaged nerves. Best wishes on the CAP, Joyce
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby robbie » Fri Nov 30, 2007 12:55 pm

he has chronic Chlamydia pneumoniae, Mycoplasma pneumoniae, Epstein-Barr virus, Cytomegalovirus, HHV-1, systemic candidiasis, and that's just the slate we know about. He also secretes little or no stomach acid to digest his food, he has a leaky gut, sensitivity to gluten and casein, severe zinc depletion, and elevated heavy metal accumulatons

what is he like just as a person with ms, how is he? is he working , is he in a chair, does he use cane, can he still piss without a tube, what's his EDSS, is he still able to have sex, is he still hungry, can he walk, can he lift his feet, does he have spasams, can he cross his legs, does he move his legs with his arms when sitting, how long has he had ms.
I think as a community we need to know a little more about each other, we are all trying to make decisions based on words without faces or even basic understanding of what we go through in our daily lives. More pictures and more details.
When i read about all the things that is wrong with steve he seems like he should be dead.
Had ms for over 19 years now.
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