Introduction and a question about mechanism of action

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

Introduction and a question about mechanism of action

Postby Frank » Thu Jan 04, 2007 11:42 am

Hi,

my name is Frank, I'm 30yo and I live in germany.
I have RRMS with an EDSS around 2 I guess. I'm able to walk up to 8km in about 90mins - but after that distance my right foot is dropping a bit and my right leg feels really heavy.

I was on Copaxone at first and switched to Tysabri this summer.

Since yesterday I read with great interest about your idea of MS treatment.
I read various forum posts and grub a bit through http://www.CPn Help.org.

Do you think its possible, that the mechanism of action of ABX on MS could be due to a weakening / supression of the immune system by the massive ABX intake.

In the context of common cold doctors told me that ABX weaken the immune system, so I wouldnt be surprised if the massive long term ABX intake had a strong supressive impact on the immune system.

Did anyone of you already discontinue the ABX because he/she considers him/herself as healed from MS?
Is the MS state still stable then?

Thanks for you answers.

--Frank
Last edited by Frank on Tue May 15, 2007 2:10 pm, edited 1 time in total.
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Abx

Postby mormiles » Thu Jan 04, 2007 6:52 pm

Hello Frank, While some antibiotics have some immunomodulatory effect, the hugely meaningful effect is that they kill bacteria. The doctor you mentioned is like so many who have difficulty believing that the causes of MS are anything other than autoimmunity. Medical thinking and research have been stuck in that rut for a long time now, and it hasn't produced anything but risky drugs that might slow MS progression for some people some of the time. They have forgotten that autoimmunity is an unproven theory. There are a handful of people who have graduated from doing the protocol full-time and are now on intermittent therapy. Sarah is one of them. She will see your post soon and comment.
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Postby Frank » Fri Jan 05, 2007 1:54 am

Thanks mormiles, for your answer!

I want to come back to the possible immunesupressive effect of ABX. I was told that the weakening occurs because much of our immunity comes from the gut and the natural gutflora is erased by the ABX.
Even the intake intake of probiotic supplements cant hold up the the natural bacterial gut environment during ABX therapy - is that true?

--Frank
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Postby SarahLonglands » Fri Jan 05, 2007 2:24 am

Hi Frank, I tried to answer last night, but the site was temporarily unavailable, so I gave up and went to bed. Although I am Anecdote here I am Sarah over at CPn Help. I discontinued full time treatment with abx after a year, and this was two years ago. Since then I have had no reoccurrence of any MS symptoms and I have continued to improve. I would say that this shows that it is the abx working on an infection rather than any weakening or suppression of the immune system. The natural gut flora will certainly be erased by antibiotic treatment, but all you need to do is to take probiotics a couple of hours away from antibiotics. I never had any problems that way. You say you have had RRMS for about twelve years, well, when I started the regime, I had been suffering from MS for getting on for twenty years, for much of that time it was very benign, but it suddenly turned into very aggressive SPMS. I think that because of its aggressive nature I was able to tell very quickly that the treatment was working, because I felt it all stopping just as aggressively as it had changed in the first place: this was far more than mere immunomodulation.

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 Frank » Fri Jan 05, 2007 3:14 am

Hello Sahah,

I read about your story on CPn Help, and the improvement from EDSS 7 to 2 is absolutely fantastic - congratulations! :D

What is reason, that you still take the ABX. Shouldnt the infection be banned already? Can you get tested for the current Chlamydia Pneumoniae load?

I read about a patient who was treated with high dose cyclophosphamide and - like you - recoverd to an impressive extend (http://www.msrc.co.uk/index.cfm?fuseact ... ageid=1718 - search the page for "Maureen Kearney").

It seems to me that its much more likely to reverse tremendous, sudden exacerbations than slowly progressions that add to some disabilty over years - do you agree at that point?

Most of my MS symptoms persist since maybe three years now. Do think it would still be possible for me to get rid of them through ABX?
How long did you have the severe symptoms when you started ABX?

Are there any experiences combining Tysabri and ABX?

--Frank
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Opinion of an ininvolved doctor

Postby mormiles » Fri Jan 05, 2007 10:03 am

Hi Frank, While you wait for Sarah's reply, please read what this uninvolved doctor has to say about using antibiotics for "autoimmune" diseases at http://www.immunesupport.com/library/showarticle.cfm/ID/4090/ . My husband is recovering very nicely with the Wheldon combined antibiotic protocol within a comprehensive treatment regimen. He is not taking any of the CRAB drugs, Novantrone, or Tysabri....and he won't be in the future. Our desperation that made us previously try the R drug is gone now. It was ineffective and we left it behind. Today, the results of the current treatment have removed the desperation. There is no doubt---this is more than the halting of progression, this is reversal and recovery.
Last edited by mormiles on Sat Jan 06, 2007 4:23 am, edited 1 time in total.
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Postby SarahLonglands » Fri Jan 05, 2007 2:57 pm

Frank, the only reason I still take antibiotics intermittently is because this whole treatment is so new, you can't be sure you are still carrying some little pathogen somewhere, which might suddenly leap out and attack you. I would say this is very unlikely, but why not, just to be on the safe side? CPn is a very difficult pathogen to be tested for in any case. When I was tested, three weeks after starting treatment, I only had a serum level of 1:64, which is nothing. If I had been tested before starting it probably would have measured even lower, because levels tend to rise after first starting abx. My husband, David Wheldon, was anxious just to get me started on the regime, because he was sure, as a medical microbiologist, that I was carrying an infection

I tend to agree with you about tremendous, sudden exacerbations, but I had MS for getting on for twenty years before my last massive exacerbation. It had given me a certain amount of disability and some of that I still have that, but the main point is that from the moment I started abx my progression stopped. That is the main thing to aim for, anything extra is nice, but some people will get more repair than others. It isn't a reason not to try. I am still getting improvements now, even though most of the time I am not taking anything apart from a few supplements.

As far as combining tysabri with abx, I don't know, but tysabri is aimed at killing tracts of the immune system, abx the reverse, so I wouldn't think there would be much benefit from taking both.

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 CureOrBust » Fri Jan 05, 2007 5:06 pm

Anecdote wrote:As far as combining tysabri with abx, I don't know, but tysabri is aimed at killing tracts of the immune system, abx the reverse, so I wouldn't think there would be much benefit from taking both.
I am no doctor (or married to one) but I would of thought the abx's are doing the job the immune system could not do. ie It does not "strengthen" the immune system to kill the infection, but the chemicals of the abx's themselves killl the bacterium.

Isn't tysabri the one that whitholds the immune system from getting into the CNS?
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Postby Frank » Sat Jan 06, 2007 2:27 am

Hi,

@CureOrBust
Tysabri prevents T-Cells from crossing the blood brain barrier (bbb) by blocking the receptors on the blood vesels of the bbb and on the T-Cells. If anyone is interested you can find an interesting video on the mechanism of action here: http://homepage.mac.com/vincentmacaluso ... ring7.html

@mormiles:
Thanks for the interesting articel. Especially the fact, that abx work so well on RA was interesting to me. It is claimed that all the five big RA studies show a significant effect of ABX on RA. Do you have a link to a study that goes in detail of that?

@Sarah (sorry for mistyping your name in the last post)
Do you know how many people tried your ABX regime yet?
How about their outcomes? Is there a quick overview available somewhere on the internet (like name, regime, duration of ABX intake, statechange)?
Do some people get worse on ABX?
Could you say something about an average improvement (like 1 EDSS or so)?

How long was the time between your MS getting seriously progressive and you starting the ABX and how long did it take the ABX to improve your state?

Thanks for patiently answering all the many questions I got :) .

--Frank
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Abx for RA

Postby mormiles » Sat Jan 06, 2007 5:18 am

Frank, I'm referring you to a website created to educate and support people in the use of antibiotics for the treatment of rheumatic illnesses. In the "Studies" section there, you will find what you want. Unfortunately, the referenced sources are not clickable links---you will have to google for those sources yourself. The focus of the antibiotic treatments discussed on http://www.roadback.org is Mycoplasma, also a common co-infector with Chlamydia pneumoniae in MS. While I admire and appreciate the work done on that website, it leaves me with the impression that they are rather stuck at the concept of "antibiotics help rheumatic illnesses so let's do it and help other people who desperately need help." The unlinked references provided are sufficiently science-heavy on roadback, but compared to CPn Help.org, the prepared material reflects a community that is not advancing as quickly in its understanding of chronic infections in inflammatory illnesses. There also seems to be an under-appreciation of co-infections.
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Postby SarahLonglands » Sat Jan 06, 2007 8:29 am

Tysabri is a monoclonal antibody aimed at reducing the capabilities of the immune system, since if you believe that MS is a totally auto-immune disease, you also think that the bodies immune system has gone haywire and is attacking the body itself.

Taking antibiotics does not effectively strengthen the immune system, but by Killing the CPn infection which causes so many diseases in genetically inclined people, it helps the immune system to work properly. For instance, I used also to have asthma and hayfever and very bad reactions to mosquito and cat flea bites. Now I don't have any of that: I still get bitten as much by mosquitoes, but I hardly notice, whereas before I would get great big weeping blisters on my arms or legs.

Do you know how many people tried your ABX regime yet?
How about their outcomes? Is there a quick overview available somewhere on the internet (like name, regime, duration of ABX intake, statechange)?
Do some people get worse on ABX?
Could you say something about an average improvement (like 1 EDSS or so)?

Lots of people are trying it and many end up writing to me, however, there has only been one small trial at Vanderbilt University, involving people with SPMS and this didn't use metronidazole. You can find it somewhere in the antibiotics section here. The best place to look is on CPn Help. You won't find a table, you will have to look through both Patient Stories and people's blogs. The people who immediately spring to mind, apart from myself, are Katman, who posts here as well, and LifeontheIce, who also posts in both places. Katman is married to a doctor, like me, and 'Ice is one.

I don't know of anyone who gets worse on ABX, unless they are non-compliant. It is possible that someone with RRMS might get a relapse in the early stage of treatment, especially if they get a bout of flu or something similar, but by no means everyone.

No worries about spelling my name wrong, the most usual mistake is just to leave the last letter off completely!

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 SarahLonglands » Sat Jan 06, 2007 8:31 am

Tysabri is a monoclonal antibody aimed at reducing the capabilities of the immune system, since if you believe that MS is a totally auto-immune disease, you also think that the body's immune system has gone haywire and is attacking the body itself.

Taking antibiotics does not effectively strengthen the immune system, but by Killing the CPn infection which causes so many diseases in genetically inclined people, it helps the immune system to work properly. For instance, I used also to have asthma and hayfever and very bad reactions to mosquito and cat flea bites. Now I don't have any of that: I still get bitten as much by mosquitoes, but I hardly notice, whereas before I would get great big weeping blisters on my arms or legs.

Do you know how many people tried your ABX regime yet?
How about their outcomes? Is there a quick overview available somewhere on the internet (like name, regime, duration of ABX intake, statechange)?
Do some people get worse on ABX?
Could you say something about an average improvement (like 1 EDSS or so)?


Lots of people are trying it and many end up writing to me, however, there has only been one small trial at Vanderbilt University, involving people with SPMS and this didn't use metronidazole. You can find it somewhere in the antibiotics section here. The best place to look is on CPn Help. You won't find a table, you will have to look through both Patient Stories and people's blogs. The people who immediately spring to mind, apart from myself, are Katman, who posts here as well, and LifeontheIce, who also posts in both places. Katman is married to a doctor, like me, and 'Ice is one.

I don't know of anyone who gets worse on ABX, unless they are non-compliant. It is possible that someone with RRMS might get a relapse in the early stage of treatment, especially if they get a bout of flu or something similar, but by no means everyone.

No worries about spelling my name wrong, the most usual mistake is just to leave the last letter off completely!

Sarah
Last edited by SarahLonglands on Sun Jan 07, 2007 5:37 am, edited 1 time in total.
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 CureOrBust » Sat Jan 06, 2007 3:37 pm

Anecdote wrote:I don't know of anyone who gets worse on ABX, unless they are non-compliant. It is possible that someone with RRMS might get a relapse in the early stage of treatment, especially if they get a bout of flu or something similar, but by no means everyone.

I was on ABX's for 15 months, and did about 15 pulses of flagyl. I was compliant and took all of the recomended suppliments except melatonin. I am RRMS, and after 12 months would still have a relapse if I caught a cold/flu.
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Viral flares

Postby mormiles » Sat Jan 06, 2007 3:59 pm

COB, That's why I'm so very glad my husband has also been on two antivirals since the beginning of his comprehensive treatment regime. I've noticed that some other people on the CAP endure setbacks when they have viral flares. That doesn't mean the CAP is failing...it means the viral aspect also needs to be addressed.
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Postby Frank » Sun Jan 07, 2007 1:12 am

@COB

Do you actually have relapse when catching a flu (you said you wold have - maybe I just understand that english sentence wrong?)
Are these events really relapses (visible lesions on MRI?) or do you just feel temporary worse in the time of flu/cold - that would be quite usual.


@mormiles

what antiviral agent do you add? How much does that cost? In which way did the state of your husband improve? For how long does he take his regime?
Does he observe any significant sideeffects?

Thanks

--Frank
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