This Is MS Multiple Sclerosis Community: Knowledge & Support

i find rather,, a sign that the profit motive must be replaced with a more ethical display of "the smarts"......."progurt" says add intestinal flora to combat MS.....dr.wheldan says kill them all with antibitics,, sounds like a breeding ground for "legionaires type bugs"....both found on this site.
its the old profit motive that must be replaced.....

NPS, If you had read Dr. Wheldon's information a bit more thoroughly, you would have seen this in the adjuncts section:


You just take them at a different time of the day to the antibiotics, leaving enough time for them to pass from the intestinal system into the blood stream.

As for your "legionnaires type bugs", the breeding grounds for them are as follows:
(............nor in ThisisMS!)

The treatment for legionella is antibiotics, commonly used are quinolones (ciprofloxacin, levofloxacin, moxifloxacin, or gatifloxacin) or macrolides (azithromycin, clarithromycin, or erythromycin). (If you don't use abx soon enough, you are likely to die.)

I agree with you about replacing the old profit motive, though.

Thank you Harry and Arron for your fair and reasoned comments, as usual.

Arron, I have just started a section of my web-site, largely aimed at other artists, to try to veer them in the right direction about where to look on the internet. It is probably a bit biased, of course, but it does include a prominent link to ThisisMS, of course. I didn't want to be having to forever update it, so I have made it the kind of place where you look here, here or here to find information.

Sarah

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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.

If you look up any condition for which long-term antibiotics are prescribed but not univerally accepted by the medical community (disseminated Lyme, prostatitis, interstitial cystitis) you will see that many people report more than a 4 month wait before impressive results.

If a person finds such a wait disturbing, and expects immediate relief, they ought to avoid the antibiotic regimen. Of course a delay before efficacy in MS is a given with other treatments; it takes 12-18 months for Copaxone to give impressive results for instance. Of course there are much more data on Copaxone- I am not suggesting they are equivalent. I am suggesting that MS is a pretty complex condition and also that an infection with CPn appears to be anything but "simple", which if you've read extensively on the subject, you already know.

In general I think this board has done a good job of presenting a lot of useful interesting information regarding CPn and empirical treatment, and I don't see any problem whatsoever with the information being presented as nothing is guaranteed and no one is coerced to take this regimen.

I feel like a broken record but I again suggest that reading the (multiple) patents on treatment of CPN will result in finding the results of many patients who have taken the treatment, with a variety of conditions. None of that is airtight as those are not controlled experiments.

If someone finds the information unconvincing they can simply not take antibiotics. I would fully respect and understand any individual that made such a decision.

Bromley, it seems to me the impression that the board is being 'hijacked' is somewhat imaginary, with all due respect. Sarah's chosen name is "Anecdote", her husband's website states clearly that nothing can be guaranteed, and I've tried to be tentative in my posts.

I took LDN for 2 months and it did absolutely nothing for me. Yet there are people raving about it all over the net. So I understand what you are concerned about, yet I don't feel that there is that much to worry about at the moment, since people are just being provided anecdotal information and possibilites to discuss with their medical doctors.

And again, please read the patents.

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On Vanderbilt Antibiotic Protocol since January

[quote="bromley"]LifeontheIce is reporting improvements but also reported very good results with statins.

Statins made me recover neurologically after using them for several months. My memory and ability to think was coming back too, very slowly, however. I seemed to never be sure of anything.

The first time I tried the antibiotics was in June 2004 and I had to stop them after one month because of reocurrence of the paresthesias. Two months later I realized sudden improvement in my mental capacities. I decideded to restart the ABX in October. I discontinued the therapy after one month ( and another pulse of Metronidazole) for the same reason.

I met Daunted on theMultipleSclerosisSucks forum and he pointed out to me that the paresthesias were the Herxheimer reaction.

Since February I am only on the antibiotics and my memory is steadily getting better. It is still no match to what I used to be 15 years ago, but I now I can recall everything I need. It takes more time, however.

This is why I am convinced the antibiotics work for me.

Aggggh!!

A lot of patients have a significant misunderstanding about what exactly a Jarisch-Herxheimer reaction is. I'll simply say that paresthesias when you are taking Metronidazole are probably not a Herxheimer reaction but are a side effect of Metronidazole itself.

Metronidazole is toxic to the nervous system and causes peripheral neuropathy. Yes, Metronidazole itself can damage your nervous system and cause tingling, etc. Obviously you are doing a lot better, which I am very happy to hear, and that may well be a result of the antibiotics. So this is just a piece of general info for everyone.

For anyone taking metronidazole; it is important to realize that any parasthesias should be reported to your doctor because they may well mean you are suffering from a metronidazole induced peripheral neuropathy!

I'm not trying to be a pain to anyone. I'm very concerned that people are taking things like metronidazole which is an excellent medicine but has serious possible side effects without the knowledge or supervision to do it safely.

Here are a great many papers documenting the link between metronidazole and neuropathy for anyone interested in a cite rather than my own ramblings:

<shortened url>

You probably have to cut and paste that together.


Anyway, I'm not sure whether to keep posting or not. I feel that people should really know facts such as the idea that parasthesias that start after going on Metronidazole are likely directly induced by the drug and not a Herxheimer reaction. I think it is a really important piece of information so that people know to tell their doctor about the reaction because it may require testing for peripheral neuropathies. But I also feel like that sort of info may not be welcome.

Anyway, I hope the Pubmed cites, at least, are useful to anyone starting a course of metronidazole.

Justinian,

You are obviously well-intended, but LifeontheIce is in fact a practicing medical doctor. I severely doubt it is news to her that metronidazole can cause neuropathy.

She's relating a summary of our conversation which was basically founded on the fact that she initially felt like crud while taking the antibiotics, a difficult and understandable situation. I simply suggested that this might be an indicator of a bacteria die-off reaction.

Any information is welcome on this forum and certainly there is considerable overlap between adverse reactions to metronidazole and endotoxic bacteria die-off reactions.

But I am not aware of anyone that has presumed that parathesias, alone, are a confirmation of CPn infection.

In my case, I have experienced very little in the way of parathesias while on metronidazole. What has happened, is that after an extended pulse, I have developed mini-exacerbations, weakness and bladder issues mostly, but those have occured before the antibiotics and are not due to peripheral neuropathy as this was initially suspected and totally ruled out by EMG/NCV studies.

Since begininng the regimen I have had some mild tingling that eventually subsided on its own. I take a lot of B-vitamins and this may have treated it effectively.

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On Vanderbilt Antibiotic Protocol since January

Thank you both for your comments. Since I started antibiotics in February, I did not suffered any paresthesias. I might have felt somewhat feverish with the third pulse of Metro, but nothing more.

Justinian, have you considered that any of these rare side-effects of metronidizole, unlike the much more common ones of feeling tired, sick, or just plain 'yukky' might be the result of someone suffering bacterial die-off? My husband, being a consultant medical microbiologist has not been remotely worried by anything I have reported to him.

Like LifeontheIce, after the third or maybe fourth bout of metronidizole I ceased to feel anything more than in her case slightly feverish and in my case tired and somewhat tearful. Don't make us stop you posting, though, but do give doctors and highly educated spouses thereof a degree of intelligence. I also doubt if anyone thinking about starting a course of antibiotics using the Vanderbilt or Wheldon protocols would do so without thoroughly reading postings on the Antibiotics forum.

Sarah

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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.

Just came across this recent article which is quite interesting. Don't know if this has been previously posted.

Harry

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Study Finds Evidence Suggesting Infectious Agent Plays Role In MS Incidence

The incidence of MS could be linked to an infection, according to results of a study published in the August issue of the journal Multiple Sclerosis.

Using data from 1970 to 1997, researchers examined a comprehensive register of MS cases in Tayside, Scotland, which has possibly the highest prevalence of MS in the world, to examine patterns of MS incidence.

Researchers found a total of 772 cases during the study period with an annual incidence of 7.2 cases per 100,000 people. Patients had a mean age of symptom onset of 35.7 years and 73.8 percent of cases were women. A general increase in cases over time was attributed to better detection and diagnosis.

However, time- and location-related spikes in incidence were found, including the period from 1982 through 1995 in which the annual incidence rose to 8.6 cases per 100,000 people, and specifically from 1993 through 1995 during which the annual incidence rose to 17.1 cases per 100,000 people.

"The cyclical nature and close temporal proximity of the peaks argues against a purely genetic component," the authors noted, adding "infectious agents may be of importance in determining the frequency of MS in this genetically susceptible population but no particular agent has been identified."

More research is required to determine which, if any, infectious agent could be involved.

Thanks Bromley for starting this thread, "Anti-biotics: Had Your Fill of Them?", and for your tact and diplomacy discussing it.

I must say I've had my fill.

To all--carry on and be well.

Sharon

Well this discussion appears to have ended, mostly, although Bromley had raised some interesting questions.

Although if you've had your fill it seems simple enough to avoid threads that discuss them!

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On Vanderbilt Antibiotic Protocol since January

Sharon,

do concider once more before you leave the board. Few intelligent and educated writers like you have prevented ThisIsMS from turning into just another alternative medicine board full of poorly justified theories, questionable testimonials and conspiracy theories against drug manufacturers.

Anyway, whatever you decide to do, take care.

-finn

Btw, Arron:


Well, there is this one microbiologist who is often referred as "dr.", even by his wife which is kind of amusing from a scandinavian perspective. Seriously, it may rise some false expectations about his understanding of clinical and pathological signs of MS. But I suppose you know what you're doing when you have chosen to be involved in promoting "paintings and antibiotics" ;-)

Dear Finn,

Dr of science is not a medical doctor. Just a title, like the latter one.

Sarah, Katman and I are here not to promote anything. We were people that modern medicine could not help. Now we are well.

Some of us get better with the approved treatments, some wil get worse. You must be very satisfied with the treatment you are receiving and it is extraordinarily good. We are here for those who had false expectations with the respected therapies.

This particular alternative therapy has helped.

Finn said:

I find this kind of amusing from my English perspective. Dr. David Wheldon is my husband, but I normally call him "David" even on ThisisMS, certainly at home, sometimes something much less polite! He is a fully qualified Medical Doctor. He works at consultant level in microbiology having previously studied neuropathology under David Oppenheimer at Oxford. He is an MB ChB FRCPath, (Fellow of the Royal College of Pathologists.)

I have a mere MA in fine art from University College, London. I use my maiden name of Sarah Longlands because I sold many paintings before meeting David. I am also a violin dealer.

David makes his living in the NHS as a medical practitioner, I make my living from selling paintings and violins. We are neither of us involved in promoting anything. David offered me the treatment being developed at Vanderbilt University by Sriram and Stratton, both fully qualified Medical Doctors as well, and I chose to take it. I got better and felt I had to let other people know so that they could make their own choice.

Sarah

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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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"To be is to be perceived."
--Marcello Mastroianni