Hello everybody,
Let me shortly introduce myself. I’m 29 years old and I have MS. When diagnosed with MS 2 years ago, I was told that there was pretty much nothing that could be done. Now I’m not really the type who accepts such an attitude. As long as we are breathing there is a solution. You just have to find it. I have been following this forum for a while and got convinced of its power. Quite some knowledgeable people are participating and putting our minds together might give some innovative ideas. So all of you reading, if you have something to add to the forum, please DO.
Thanks to Sarah and David, I could convince my doctor to get me on antibiotics and after a good month, I’m quite sure that my MS symptoms are improving. I just feel better overall, not cured though.
So these antibiotics seem to work, better for some people but they work. Bye the way, I heard stories of MS patients being treated with antibiotics in South-Africa and France and doing good. It seems to be a well-kept secret but kept by whom? If we could now understand why antibiotics work, we could get closer to solving the MS mystery and an even better treatment. I started this topic for you to give your opinion on the why antibiotics might work. I hope we can get as many different opinions as possible.
Happy New Year and best wishes to all of you.
Why antibiotics might work?
Hi, HappyDaddy!
I thought I'd answer this one.
Over the past year, this has been mentioned off and on (at http://www.thisisms.com/modules.php?nam ... c&start=60 for one example), but I'll do so again.
An integral part of apoptosis involves the activation of an enzyme called caspase 3. Caspase 3 mediates programmed cell death and its activation triggers apoptosis. If you inhibit the activation of caspase 3, you will diminish cell death (i.e. the oligodendrocytes are less likely to die off so rapidly). This in turn, of course, is helpful for MS.
It has been shown over and over that quite a few drugs will do this. Minocycline (and probably other antibiotics) as a HUGE example, inhibits the activation of caspase 3.
A pretty good description of caspase 3 can be found at: http://www.bioscience.org/news/scientis/caspase.htm
Here is the thought of mine that I posted a while back:
Well, that's my two cents.
Deb
I thought I'd answer this one.
Over the past year, this has been mentioned off and on (at http://www.thisisms.com/modules.php?nam ... c&start=60 for one example), but I'll do so again.
An integral part of apoptosis involves the activation of an enzyme called caspase 3. Caspase 3 mediates programmed cell death and its activation triggers apoptosis. If you inhibit the activation of caspase 3, you will diminish cell death (i.e. the oligodendrocytes are less likely to die off so rapidly). This in turn, of course, is helpful for MS.
It has been shown over and over that quite a few drugs will do this. Minocycline (and probably other antibiotics) as a HUGE example, inhibits the activation of caspase 3.
A pretty good description of caspase 3 can be found at: http://www.bioscience.org/news/scientis/caspase.htm
Here is the thought of mine that I posted a while back:
If you do a web search for "caspase3+minocycline", you will see what I mean.It appears that there may be conflicting theories being published about how minocycline DOES help MS....via the "viral" pathway (which doesn't sound correct to me, because of the fact that antibiotics don't affect viruses), the "allergy" or bacterial pathway, or via its inhibition of caspase-3 (an enzyme that is part of the cascade that mediates programmed cell death). My personal thoughts are that minocycline accidentally exhibits it effectiveness for MS as something totally unrelated to its original intended use.
Well, that's my two cents.
Deb
HappyDaddy,
Good to hear that you are feeling better on the antibiotics regime. A month is early days - Sarah saw improvements at this stage but the course takes a year (followed by regular top-ups). David Wheldon's paper sets out his theory on cpn and ms (which I, as a non-scientist, find convincing).
A number of individuals (both in the UK and overseas) are following this regime and it would be good, in say a year's time, to gather together feedback on how they are doing. You mentioned that you had heard that antibiotics were being used in South Africa and France. It would be good to get some information on what regimes are being followed in these countries and with what results.
The use of antibiotics (for example using David Wheldon's suggested regime) certainly warrants a proper trial. Unfortunately, our national ms societies still seem wedded to the auto-immune theory (although things are beginning to change). If enough 'anectodal' evidence can be found to support such a trial pressure needs to be put on these national societies. National governments should also see the attraction - antibiotics are a lot cheaper than the immune modifying drugs.
All the best and keep us posted on your progress.
Bromley
Good to hear that you are feeling better on the antibiotics regime. A month is early days - Sarah saw improvements at this stage but the course takes a year (followed by regular top-ups). David Wheldon's paper sets out his theory on cpn and ms (which I, as a non-scientist, find convincing).
A number of individuals (both in the UK and overseas) are following this regime and it would be good, in say a year's time, to gather together feedback on how they are doing. You mentioned that you had heard that antibiotics were being used in South Africa and France. It would be good to get some information on what regimes are being followed in these countries and with what results.
The use of antibiotics (for example using David Wheldon's suggested regime) certainly warrants a proper trial. Unfortunately, our national ms societies still seem wedded to the auto-immune theory (although things are beginning to change). If enough 'anectodal' evidence can be found to support such a trial pressure needs to be put on these national societies. National governments should also see the attraction - antibiotics are a lot cheaper than the immune modifying drugs.
All the best and keep us posted on your progress.
Bromley
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SarahLonglands
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Hello, HappyDaddy,
So you can guess from this that certainly for me, the reason why my particular regime of antibiotics worked was to treat the causative infection. Minocycline and doxycycline are immunosuppressive and well as bacteristatic, so one can expect a certain amount of improvement along the lines detailed by OddDuck, but if infection is the cause, you have to kill the organism, hence the bouts of metronidizole. This is not a pleasant drug to take for a lot of people and can make some people, not everyone, feel worse as the toxins are cleared from the system. I would assume that if minocycline is given for its immunosuppressive qualities it would need to be taken forever. It would be good if it had the effect of holding the C Pn in the non-reproductive mode for so long that all the host's cells which were hiding them were eventually replaced, which would take years, but would have the same effect as speeding up the process with metronidizole.
It is worth noting that the recent Vanderbilt trial used antibiotics which were not immunomodulatory and I changed from doxycycline to rifampicin after six months at the suggestion of Charles Stratton of Vanderbilt. The fact that my improvements continued would seem to indicate that the antibiotics were not working merely for the immunomodulatory qualities.
At first it was thought that I might need to take the treatment non-stop for up to two years, but it was decided to stop the full-time treatment after a year and move onto two weeks every two or three months for a couple of years to clear out any last remaining organisms. It must be said that I feel no difference when I am taking the abx and when I am not, apart from an ongoing gradual improvement.
So please keep us posted and make sure your physician is willing to prescribe for the appropriate time.
Sarah
(edit done because I said neurologist where I should have said radiologist: wishfull thinking, perhaps?)
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Hello, HappyDaddy,
As Bromley says, I did see improvements after a month, but largely in the matter of losing my brain fog and habit of laughing inappropriately in certain situations. I also began to be able to do some painting again in a rather stilted manner. If I hadn't been able to improve upon that, I would have had to give it up, being too much of a perfectionist. The improvements are still happening now, 16 months later and I would not have felt confident enough to post anywhere about it for six months, when I saw the result of my next MRI scan, which had the radiologist running out of the room and rushing us along to his room to show us the improvements, which he had never seen the likes of before in someone with progressive disease. That gave me the confidence to realise that the improvements were real: no activity at all apart from great diminishment of many of the lesions. I knew I was feeling much better but was aware that lesions can form in places which cause no outward marks.A month is early days - Sarah saw improvements at this stage but the course takes a year (followed by regular top-ups). David Wheldon's paper sets out his theory on cpn and ms (which I, as a non-scientist, find convincing).
So you can guess from this that certainly for me, the reason why my particular regime of antibiotics worked was to treat the causative infection. Minocycline and doxycycline are immunosuppressive and well as bacteristatic, so one can expect a certain amount of improvement along the lines detailed by OddDuck, but if infection is the cause, you have to kill the organism, hence the bouts of metronidizole. This is not a pleasant drug to take for a lot of people and can make some people, not everyone, feel worse as the toxins are cleared from the system. I would assume that if minocycline is given for its immunosuppressive qualities it would need to be taken forever. It would be good if it had the effect of holding the C Pn in the non-reproductive mode for so long that all the host's cells which were hiding them were eventually replaced, which would take years, but would have the same effect as speeding up the process with metronidizole.
It is worth noting that the recent Vanderbilt trial used antibiotics which were not immunomodulatory and I changed from doxycycline to rifampicin after six months at the suggestion of Charles Stratton of Vanderbilt. The fact that my improvements continued would seem to indicate that the antibiotics were not working merely for the immunomodulatory qualities.
At first it was thought that I might need to take the treatment non-stop for up to two years, but it was decided to stop the full-time treatment after a year and move onto two weeks every two or three months for a couple of years to clear out any last remaining organisms. It must be said that I feel no difference when I am taking the abx and when I am not, apart from an ongoing gradual improvement.
So please keep us posted and make sure your physician is willing to prescribe for the appropriate time.
Sarah
(edit done because I said neurologist where I should have said radiologist: wishfull thinking, perhaps?)
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Last edited by SarahLonglands on Sat Jan 01, 2005 6:23 am, edited 1 time in total.
Sarah,
Well said. And, although I have no results to report as of yet, it is interesting to note that the regimen I am taking consists of ampicillin, minocycline, AND rifampin, with pulses of flagyl (metronidizole).
Actually, the second medication could be Zithromax instead of minocycline; I'm taking minocycline because of the enormous cost difference (Zithro is over $2,000 a year), but if a person wanted to amplify the probability that any improvement was due to the anti-bacterial nature of this regimen, they could spend the money and substitute Zithromax for Minocycline.
Of course there is always the possibility that this combination of antibiotics is effective in other ways than killing a pathogen, but for that we need a great deal more research. In Sarah's case it now seems implausible that she improved simply due to "neuroprotection" or "anti-inflammatory" action, and it is important to note that she was seronegative via ELISA (Many doctors will refrain from prescribing antibiotics once they see the test was negative).
As far as antibiotics being a "well-kept secret", that's been the most frustrating part of all of this to me. The fact is, It's not a secret to any patient, who, concerned about their own health, spends a few hours a night a week on the Internet. It is, however, beyond the scope of what my neurologist is willing to discuss.
Sarah, any idea when the in-press paper co-authored by your husband and Dr. Stratton will be ready for distribution?
Well said. And, although I have no results to report as of yet, it is interesting to note that the regimen I am taking consists of ampicillin, minocycline, AND rifampin, with pulses of flagyl (metronidizole).
Actually, the second medication could be Zithromax instead of minocycline; I'm taking minocycline because of the enormous cost difference (Zithro is over $2,000 a year), but if a person wanted to amplify the probability that any improvement was due to the anti-bacterial nature of this regimen, they could spend the money and substitute Zithromax for Minocycline.
Of course there is always the possibility that this combination of antibiotics is effective in other ways than killing a pathogen, but for that we need a great deal more research. In Sarah's case it now seems implausible that she improved simply due to "neuroprotection" or "anti-inflammatory" action, and it is important to note that she was seronegative via ELISA (Many doctors will refrain from prescribing antibiotics once they see the test was negative).
As far as antibiotics being a "well-kept secret", that's been the most frustrating part of all of this to me. The fact is, It's not a secret to any patient, who, concerned about their own health, spends a few hours a night a week on the Internet. It is, however, beyond the scope of what my neurologist is willing to discuss.
Sarah, any idea when the in-press paper co-authored by your husband and Dr. Stratton will be ready for distribution?
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SarahLonglands
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Daunted,
Glad you managed to make the not inconsiderable trip to Sacramento: nearly as far as coming here, I should think! The minocycline and rifampin are used to work synergistically and avoid the build up of resistance, like our regime. Zithromax (azithromycin)is very similar to roxythromycin, used here if you can get the GP to prescribe it. As a macrolide it is rather expensive: they all are.
As far as the well-kept secret, I would agree, but I hope we are doing our best to bring it out into the open. It is difficult, though, which brings me to Daunted's last question about the paper co-authored by my husband and Dr. Stratton. Turned down outright by one of the referees at the second attempt. The first time he said more patients were needed. By this time they were available so were duly added. The editor asked that it be submitted again, so it was. Turned down again, because some of the patients were sero-negative, including me. "Well, you can never tell with MS patients, can you, it being such an unpredictable disease." Has anyone heard of people with any form of progressive MS just suddenly halting the disease in its tracks by doing nothing? So, its back to the drawing boards with the new year, there are plenty of journals yet to try. Many of the most innovative papers never get published, but eventually end up being read by everyone interested on the samizdat press.
Knowing that a lot of people don't have access to computers, I have spent the day writing a piece for an MS sufferer's magazine. I was asked to, but wait and see how much that gets altered or shortened!
Sarah
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Daunted,
Glad you managed to make the not inconsiderable trip to Sacramento: nearly as far as coming here, I should think! The minocycline and rifampin are used to work synergistically and avoid the build up of resistance, like our regime. Zithromax (azithromycin)is very similar to roxythromycin, used here if you can get the GP to prescribe it. As a macrolide it is rather expensive: they all are.
Yes, luckily David was so convinced about the infection angle that he even started me on doxycycline before getting me tested for anything! I went into this without any expectation of it working, so you couldn't be more surprised than me when a few weeks later everyone started commenting upon my improved speech: not talking as though I had drunk too much, even in the morning. I didn't realise I was doing it, but thinking back, I was. Within weeks I had got my normal RP speech pattern back completely.In Sarah's case it now seems implausible that she improved simply due to "neuroprotection" or "anti-inflammatory" action, and it is important to note that she was seronegative via ELISA (Many doctors will refrain from prescribing antibiotics once they see the test was negative).
As far as the well-kept secret, I would agree, but I hope we are doing our best to bring it out into the open. It is difficult, though, which brings me to Daunted's last question about the paper co-authored by my husband and Dr. Stratton. Turned down outright by one of the referees at the second attempt. The first time he said more patients were needed. By this time they were available so were duly added. The editor asked that it be submitted again, so it was. Turned down again, because some of the patients were sero-negative, including me. "Well, you can never tell with MS patients, can you, it being such an unpredictable disease." Has anyone heard of people with any form of progressive MS just suddenly halting the disease in its tracks by doing nothing? So, its back to the drawing boards with the new year, there are plenty of journals yet to try. Many of the most innovative papers never get published, but eventually end up being read by everyone interested on the samizdat press.
Knowing that a lot of people don't have access to computers, I have spent the day writing a piece for an MS sufferer's magazine. I was asked to, but wait and see how much that gets altered or shortened!
Sarah
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The peer-review process is really quite a shambles at times, depending on the issue, the vested interests of the reviewers, and the journal involved.Anecdote wrote:
As far as the well-kept secret, I would agree, but I hope we are doing our best to bring it out into the open. It is difficult, though, which brings me to Daunted's last question about the paper co-authored by my husband and Dr. Stratton. Turned down outright by one of the referees at the second attempt.
For the life of me I can't see why these cases couldn't be published for the evaluation of physicians and patients alike. I have seen plenty of case reports published in the medical literature!
Well, one thing physicians are going to have to get used to, is the idea that their patients may be more well-informed than they are, at least as regards new, experimental, or creative therapies for poorly understood diseases. This is due to the Internet and the efforts of people like you, Sarah, and your husband (and I've posted a few things on the net, myself, to try and spread this information further).Anecdote wrote: Many of the most innovative papers never get published, but eventually end up being read by everyone interested on the samizdat press.
The problem with having solid diagnostic testing for some conditions (such as HIV) is that it has apparently led doctors to believe that all the test results they look at are completely reliable.
No previous doctor has actually taken a careful clinical history of my symptoms. They mostly relied on (mostly quick and incomplete) neurological exams, and, overwhelmingly, negative test results. In many cases I have spent $400 to have a neurologist read a MRI report and do a quick neurological exam on me. If they did something else, it wasn't obvious or charted.
I had an array of symptoms correlated with CPn throughout my lifetime, increasing in intensity just prior to the onset of my neurological symptoms. No other doctor has seen any relevance to these other (non-neurological) symptoms, because they are looking at my present "normal" blood panels, and assuming that if I had some sort of an infection, they would see clear evidence.
My neurologist (a highly-regarded clinician) also told me that that it was flatly impossible that I had neurological Lyme, because "you never had a rash or arthritis, and that simply never happens."
(He wrote off this possibility even though he is plainly puzzled by my case, and would not consider a bacterial etiology for my symptoms).
So it's a shame, but "clinical" medicine or the possibility of empirical treatment seem to be a rarity nowadays, even though medicine is supposedly more advanced than it ever has been...?
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SarahLonglands
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Sarah
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I wonder how many people, neurologists included, really know what 'empirical' means? Or even 'evidence based' come to that? There is no problem with testing for something like HIV, but take something like meningitis: if it is suspected you start treatment straight away, because you daren't wait until the next morning when you get the tests back. Ok, a well hidden, merely chronic infection of C Pn is different, obviously, because there is no risk of sudden death overnight, but if an expert in infectious diseases can sense it, why just disregard that person? My husband has just spent an irksome week attempting to control an outbreak of winter vomiting virus at the hospital, along with the other microbiology consultant and the control of infection nurses. If 'The Management' have other ideas as to what the best thing to do is, you end up in a no win situation. Frustrating!So it's a shame, but "clinical" medicine or the possibility of empirical treatment seem to be a rarity nowadays, even though medicine is supposedly more advanced than it ever has been...?
Sarah
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