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For anyone interested in the historical process of The MAP bacterium and Crohns disease , it is in the second section of my post, I found it very interesting as the the mentioning of the MAP Bacteria having a morphing property, this morphing property is discussed in the suspected bacteria in Lyme disease(Borrelia burgdorferi). And it has been stated that a relative form of the suspected Lyme disease bacteria is a possible cause in MS (Borrelia mylophora).

Borrelia mylophora and Borrelia burgdorferi are stated as being different bacteria, yet to me, their characteristics seem similar to the properties of the MAP bacteria.

Notice the term "spheroplast" in both articles..


From: http://www.geocities.com/SoHo/Gallery/6412/stealth.htm

In fact, the cell shapes produced by a diminished, discontinuous, or absent cell wall are "almost endlessly variegated" and work their way into "all aspects of microbe participation in life." They're known by various technical names, according to the degree to which they've lost their cell wall: spheroplast, protoplast, L-phase, L-forms, transitionals, and mycoplasma. According to some physicians, mycoplasma, which are unable to make any cell wall whatsoever and are highly divergent in type, may be involved in the initiation of cancer

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The below is the historical information on the MAP bacterium and Crohns disease..

http://64.233.161.104/search?q=cache:dl ... +MAP&hl=en


In the beginning…
The search for the cause of Crohn’s disease is truly a medical “who-done-it.” The first detective to try to solve the mystery began sleuthing in the early part of the twentieth century. Dr. Thomas K. Dalziel of Glasgow, Scotland, suspected that this human intestinal disease had something in common with a similar disease in cattle caused by a slow-growing bacterium called Mycobacterium avium subspecies paratuberculosis (MAP). Applying the same test to diseased human tissue that successfully found the bacterium in animals, Dr. Dalziel found – nothing! Not a trace of the bacterium. Why not? Medical science in 1913 couldn’t answer that question.

Enter the next detective: Dr. Crohn.



In 1932, Dr. Burrill B. Crohn researched the disease that now bears his name. He too could find no evidence of a bacterial origin for Crohn’s disease. Consequently Crohn’s disease has, for over fifty years, been classified as an autoimmune disease with an unknown cause. From this point on, most doctors concentrated their efforts on treating patients with maintenance therapies as the disease slowly destroyed the intestinal tracts of its victims.

But one doctor wasn’t satisfied.



Dr. Walter R. Thayer, Jr., a professor at Brown University Medical College in Rhode Island and a practicing gastroenterologist specializing in Crohn's disease continued to research MAP as a cause of Crohn’s. Dr. Thayer approached Dr. Rod Chiodini, who had been working with MAP in cattle. Thayer believed that an infectious agent might be the true cause of Crohn's disease. Could Dr. Chiodini help find it?

Chiodini’s finding: Mycobacterium avium subspecies paratuberculosis in humans—and a surprise!

An authentic secret agent, this elusive bug turned out to have “cloaking device.” When MAP settles into a human intestinal tract, it sheds its tough, waxy shell, mutating into what’s called “spheroplast” form. In this form, it cannot be detected by traditional testing methods, which is why Drs. Dalziel and Crohn couldn’t find it. Drawing on his expertise with mycobacteria, Dr. Chiodini was able to culture this sneaky intruder, causing it to revert to its original “bacillary” form – thereby revealing its true nature.

And now we lift its fingerprints…
…DNA fingerprints, that is. In 1985, a gene sequence was discovered which is unique to MAP. The sequence is known as IS900, and about 20 copies of the sequence are present in the MAP genome. The gene sequence is not present in any other known organism, meaning that IS900 is a unique genetic “fingerprint” for MAP.


In 1991, Prof. John Hermon-Taylor, of St. George’s Hospital Medical School in London, used genetic fingerprinting techniques to search for the IS900 sequence in the intestines of Crohn's patients. He found that incriminating fingerprint in 65% of Crohn's patients compared with 12.5% of people without Crohn's disease. This was a highly significant finding, giving the first solid evidence that Crohn's patients were far more likely to be infected with MAP than the population at large. Since Hermon-Taylor’s research was published, six independent teams in four countries (England, France, Denmark, USA) have replicated the finding of the MAP fingerprint in a significantly higher percentage of Crohn's disease patients.

Does the DNA prove the case?

As with any suspect, just finding a print at the scene does not indicate whether a suspect is alive and dangerous, or dead and harmless. Thus it is with DNA. The test for “alive and kicking” is not DNA, but RNA. Similar to DNA, RNA is only found in living, multiplying cells. And researchers in New York, searching for MAP RNA, found it in all of the Crohn’s patients they tested, all of the ulcerative colitis patients tested, and none of the people who didn’t have Crohn’s disease. Great detective work, and more solid evidence to build a case against MAP.

What happens if we treat Crohn’s disease as though Mycobacterium avium subspecies paratuberculosis were the cause?

Prof. Hermon-Taylor, treating his Crohn’s patients with the combination of antibiotics known to be effective against MAP, achieved the greatest percentage remission of any Crohn’s treatment protocol. Around the world, other doctors who tried this treatment on their patients had similarly successful results. Treating Crohn’s disease as though it were a MAP infection not only works, but works very well.

How might Mycobacterium avium subspecies paratuberculosis enter the human digestive tract?



The answer to that question begins with a field trip – to a dairy farm. In the United States, a national tragedy is slowly building – one that costs our dairy farmers an estimated $200 million every year. It is called Johne’s disease (pronounced “YO-NEES” and named for its discoverer, Dr. Johne). Forty percent of large dairy herds in the U.S. are infected! Left unchecked, Johne’s can stealthily work its way through a herd causing diminished milk production and ultimately death to cattle. Farmers, finding a cow in their herd with clinical symptoms of Johne’s, (rapid weight loss, diarrhea, reduced milk production) typically cull that cow, sending it to slaughter. But the silent problem remains, sapping production and profits, unless the farm undertakes an aggressive, long-term cleanup program. The cause of Johne’s? It’s been known for one hundred years: MAP.

What does Johne’s have to do with food?

An infected cow may show no symptoms, yet may be shedding MAP in its feces – and in its milk. Nevertheless, the dairy industry insists that milk is safe.

Milk Testing in the United Kingdom…

In the UK, they believed that their milk was safe. But in 1998 researchers cultured living MAP from samples of pasteurized milk taken from store shelves in Northern Ireland, which warranted a larger study. In February 2002, this new study concluded that live MAP is indeed present in retail milk, despite pasteurization.

Milk Testing in the United States…



Sadly, in the US we don’t really know if the milk we give our children is free of MAP contamination. The dairy industry has paid for studies that allege that pasteurization kills all MAP organisms in milk. The overwhelming majority of other researchers disagree. But despite questions about milk safety, the dairy industry insists that its pasteurization process is so good that we don’t even need to test milk after it’s been pasteurized. Also, protecting the dairy industry instead of the consumer, the Food and Drug Administration refuses to test retail milk. Instead, the FDA’s official position is that “there is no hazard” to the consumer from MAP. Taking on the role that FDA should have assumed is the Marshfield Clinic in Marshfield, Wisconsin. Their retail milk testing of U.S. supermarket milk for the presence of MAP is underway. Results will be published in the summer of 2003.

What about beef? Is there a problem with beef cattle as well?

The beef industry has begun to learn the extent of the MAP problem in beef herds. The food safety methods for testing of beef and beef products mandated by the USDA Food Safety and Inspection Service are only capable of detecting fecal contamination of meat. They are not capable of detecting intracellular and extracellular MAP bacteria that may be present in blood, muscle tissue and various internal organs from the cow.

And those sick dairy cows: Might our children be eating contaminated hamburgers right now?

Yes. Present regulations permit cows known to be infected with MAP to be slaughtered for human consumption.

Is the detective work finished?

Not at all. But despite the handicap of shoestring budgets, little or no grant money, and hostile special interest groups, dedicated researchers around the world persevere, adding to our knowledge of the relationship between MAP and Crohn’s disease. Physicians pursue improved treatment regimens for Crohn’s disease. Scientists search for more efficient ways to test food products for the presence of MAP contamination.

Current and Future “Bright Spots”

Prior to the formation of PARA, little to nothing was being done about the scientific evidence which suggests that MAP may cause Crohn’s disease. Since PARA began active efforts, much has happened – highlights as follows:

National Institutes of Health – In Dec ’98, responding to pleas from PARA, NIH/NIAID (National Institute of Allergy and Infectious Diseases) hosted a workshop to evaluate concerns about MAP as the cause of Crohn’s. In May ’99 they released an entirely new Crohn’s research agenda targeting an infectious cause of Crohn’s. Even though it called for “federal agencies with regulatory authority over the food supply to seek viable MAP in commercial milk and other dairy products as well as meat,” the FDA has not responded. The most recent development at the NIH comes this year, 2002, when they began funding significant amounts for important clinical and basic research.

Centers for Disease Control – In May 2000, responding to pleas from PARA, the CDC formulated a plan of action to deal with the MAP problem. Since 2001 CDC has worked closely in collaboration with the NIH and other agencies to improve diagnostics/testing and is conducting a large epidemiological study which will be complete in 2003.

US Congress – In 2000, PARA was successful in getting language urging further research for Crohn’s and MAP introduced into the Senate and House Appropriations Subcommittee Bills for FY 2001. In March of 2001, PARA testified to the Appropriations Committee, and in May of 2001 issued written testimony to the Agricultural Committee about the MAP/Johne’s/Crohn’s connection.

European Commission – In Feb 2000, the EC published an exhaustive report promoting an “urgent research program” to address the MAP/Crohn’s issue.

United Kingdom - In Dec 2001, food safety authorities (ACMSF) approved a comprehensive program of measures aimed at eliminating MAP from retail milk.

PARA continues to lobby the U.S. federal agencies, create worldwide awareness and work for increased funding for the pioneering researchers whose motivation is the prevention and cure of Crohn’s disease. Will you join PARA, and help us to help them?

I found this to be related to this discussion as per antibodies and neurological disorders..


From : http://hosted.ap.org/dynamic/stories/H/ ... TE=DEFAULT

Immune Therapy Stops Alzheimer's
Antibodies against brain-damaging substance appear to halt disease progression in small human study
By Liz Brown
Betterhumans Staff
9/16/2004 5:00 PM

Credit: Dana Spiropoulou
Jab to the head: Antibodies delivered intravenously have cleared brain-damaging substances and apparently prevented Alzheimer's progression in a small human trial

A new antibody treatment for Alzheimer's has apparently halted its progression in a small human trial.

The treatment lowers the amount of beta peptide in the brain, thought to be the cause of amyloid deposits that damage brain tissue and cause Alzheimer's.

Richard Dodel and colleagues from the Friedrich-Wilhelms University in Bonn, Germany have given five patients with early Alzheimer's the treatment, which involves intravenous injections of immunoglobulins containing antibodies against the peptide.

The researchers found that it reduced levels of the substance in the brain and prevented the worsening of Alzheimer's symptoms.

Plaque removal

Previous research with transgenic mice has shown that specific antibodies could clear beta amyloid plaques. Alzheimer's is linked to the accumulation of these deposits, which gather in specific regions of the brain critical to thinking and memory. Beta peptide is a key component of amyloid deposits.

For this study, the researchers gave the five patients monthly injections of antibodies over six months. They analyzed cognitive function and the levels of beta peptide in cerebrospinal fluid at the beginning and end of the study.

They found that the level of peptide in cerebrospinal fluid fell by 30% and the level of peptide in the blood shot up 233%, suggesting that it was being cleared from the brain.

Cognitive protection

While cognitive function improved marginally in four patients, their condition didn't worsen, which might have been expected after six months. Visual tasks improved in three of the patients and stayed the same in the other two.

There were no major side-effects to the experimental treatment.

However, the authors point out that conclusions cannot be drawn with results from only five patients. They plan to do more tests to determine the efficacy of the experimental treatment.

Intravenous antibodies have already been used to treat some neurological diseases. It is thought that higher doses of the antibodies may be even more effective in Alzheimer's patients.

The research is reported in the Journal of Neurology, Neurosurgery & Psychiatry.

This my first post to this web site, but I have been reading information here for some time and find the information educational and the contribitors from above average to very intelligent. I have particularly enjoyed the posts about the link between Chlamydia pneumoniae and MS. Just a brief hx about my MS. First presented at age 29 with optic neuritis when my first child was 9 months old. Had examination of CSF which showed elevated IgG and my neurologist at that time raised the possibility of MS. Went to Emory in Atlanta for consult about that as well as tx for a retinal tear. Did not try prednisone for the o.n. because I was breast feeding. The o.n. eventually resolved and I did not have additional symptoms until around the age of 43. At that time I was experiencing bilateral intermittent leg pain (neuropathy) and some pain in knees and hips. Eventually the neuropathy became more chronic as opposed to intermittent. In the back of my mind I knew the possibility still existed and brought this up with my Ob-Gyn and asked him to do several tests to r/o Lymes, Lupus, and thyroid problem since I had also been hyperthyroid at one time. After these tests came back negative, he set me up with a neurologist who after clinical assement and review of my records form the o.n. episode, dx'd me as probable MS and has since agreed that I do have MS.

I have been on rx regimen of neurontin and baclofen for the past 6 years. He brought up the possibility of trying one of the ABC drugs at my first appointment with him, but I was not really sold on the idea, because I have some reservations about their efficacy. I know the majority of neros are pushing their pts. to try one of them, but I am still holding out at this point. I have a friend or two that have tried them and haven't had glaring success with their use. I do have some concern about their immunosuppressive properties.

I just had my yearly visit with my neuro and had copies of David Wheldon's papers on his rx regimen targeting Chlamydia pneumoniae as a culprit in the MS mystery. When I mentioned this to him he said he was not open to trying anything that had not undergone rigourous clinical trials like the ABC drugs. He wasn't even interested in reading the information, saying that he read things all the time in the journals and that the ABC's were the best hope that MSers had at the present time. There was always some group advocating some strange tx based on anecdotal evidence alone. I had been thinking about changing to a new neuro and after that reception, that decision has been solidified. He said he would be glad to refer me to an MS clinic, but more than likely it's recommendation would be one of the ABC drugs.

Over the past year I have experienced an increase in fatique, the mental fog that several have referred to, and worsening balance problems. Are there any open-minded neuros out there? He acccused me of having conspiracy theories about the drug companies concerning my reservaations about the ABC drugs. I just think there is a conflict of interest. I do not see the harm in trying the minocycline to see what happens. My thinking is "what do I have to lose?" Also since Sarah had mentioned the possibility of there being a window of opportunity in which the effectiveness of the antibiotic rx .

I have not had an MRI either, but what does that show other than being a refernce point for the efficacy of some drug therapy ( antiobiotics or ABC").

I'm just wondering what recourse one has if one's neuro only wants to pursue the ABC's as if those are the only drugs to try. I've thought about trying my family doctor, since she is a D.O. and may be a little more open -minded about things.

One bit of irony in all of this. is that my daughter has just been given an Rx for minocycline for a bit of acne. I also had copied several internet articles about the Chlamydia pneumoniae connection as far back as 1999 (the Vanderbilt docs).

Any words of encouragement would be appreciated.

Coach

[quote][/quote]

Coach, from what I have experienced, it is unlikely that you will find a neurologist in the US who is willing to prescribe you Minocycline for MS. (Unless, I suppose, if they are at Vanderbilt.) This is rather unfortunate, since while the ABCRs have vague ways of somewhat arresting the disease, the antibiotics seem to be far more effective.

You have one of two options: either get a general practioner to prescribe you Minocycline for some reason other than MS, or buy the medicines yourself over the Internet. Be careful if you buy them over the Internet, see earlier posts about the caution on this matter.

If you decide to take it, from what it appears in the case of other people who took the drug, it should only take a few days for you to be able to figure out whether it is being effective and whether it is worth it to continue the regimen.

However, be aware that Minocycline taken by itself short-term does not cure the disease long-term, although in my experience, it does suppress it completely. You need a combination of antibiotics in order to be rid of the bacteria that seem to cause it. (Again, please see earlier posts and Dr. Wheldon's page at http://www.davidwheldon.co.uk/cpn-treatment.pdf recommending specific medicines.)

Also, independent of the antibiotics, you can also start on the vitamins and other nutrients that he recommends. However, it is important to note that some of them, although available non-prescription, are sometimes strongly recommended against by neurologists who do not subscribe to the infection theory of MS.

Greetings Coach, when I read the section of your post concerning your neuros response to even reading Davids papers, It was like I was sitting in Kathleens Neuros office again listening to him..

I just had my yearly visit with my neuro and had copies of David Wheldon's papers on his rx regimen targeting Chlamydia pneumoniae as a culprit in the MS mystery. When I mentioned this to him he said he was not open to trying anything that had not undergone rigourous clinical trials like the ABC drugs. He wasn't even interested in reading the information, saying that he read things all the time in the journals and that the ABC's were the best hope that MSers had at the present time.

The response you got, and the response we got, are identical, her Neuro also stated he read "things" all the time in journals etc, and it was all nothing he would even consider, I found it interesting when I started questioning him about many of the current theories and work (things) being done world wide, he was clueless, had no idea what I was talking about and even got mad and started rambling on about kooks and bias and nonsense found on the web..

How are we to know what goes on in the minds of the doctors we are supposed to trust when they act this way? is it fright? is it ego? Are they terrified at the thought of a cheap product helping someone? are they so wrapped in the mindset of corporate business and money, that they cannot allow themselves to realise the purpose of all of this is to "help" those who suffer. I actually felt sorry for him, no doubt a smart man, and somewhere inside I think a caring man, but when someone refuses to even read scientific documentation from a peer, and this information is extremely relevant to the people the doctor treats, then there is a problem somewhere.

To become a medical professional is a long, expensive, and emotionally draining experience, I think all of us understand that, the phases of trials for new drugs are with purpose, but when doctors act in the manner described over and over, one must pause and wonder what is wrong, why would someone only react in a positive manner to something they know doesn't work? and then basically have a hissy fit for something mentioned that is as viable as the standard treatments? and why do I say "they" know doesn't work? because in a private phone conversation with Kathleens Neuro, he told me so..

Perhaps the placement of hope and faith is a basis for the placebo effect.

Philip

If anyone knows of one doctor in the U.S., a M.D. or D.O., who would be willing to prescribe antibiotics as described...they should post their name here.

I would travel to see them no matter where they were. I am sure others would do the same.

We have doctors listed on-line as "Lyme Literate", we have doctors doing phone consultations for LDN, but there isn't one doctor in the entire U.S. who will work with us on this? It's mind-blowing.

Philip, I can certainly agree to some extent with you about bewilderment at what goes on in the minds of neurologists when they are presented with bona fide medical research (and David Wheldon's research certainly qualifies as being of top tier calibre.) But...the simple fact is that the person who is suffering from MS has far more to lose and far more to gain than anything that someone without MS can really appreciate.

Myself, I am a two-time 2nd-level "sufferer" of MS. Many years ago, my wife was diagnosed with MS. It was fairly benign, but it was always a health issue that was in the background. She and I eventually divorced (not, I think for any reason related to her MS), and we moved on with our lives. Later on, I met my current girlfriend and then, a few years ago, she was also diagnosed with MS. Both ladies, coincidentally, are of the same racial type (fair hair, fair skin, Northern European, etc.) but even so, what are the chances? And even so, I have never really felt what it is like to not be able to make a fist, to hold a pen, or what it feels like to not know whether you will be able to see out of both eyes next year, or even be able to walk or talk coherently. So many things that we all take for granted.

I don't really have much sympathy for any health professional who isn't even willing to listen to what the latest research or ideas might be, especially given that this is a disease without an "official" known "cure." I have yet to hear of a US neurologist who has heard of David Wheldon and Sriram's research and ideas through any channels other than an MS patient. I am sure there are some out there, but I don't know of one. And never mind just having professional knowledge; from a scientific standpoint, this is a fascinating disease! It relates to the human nervous system, and to the human immune system and their interactions. How this disease can occur and the possible causes are of themself fascinating topics.

Beyond that, it is jawdropping for me to hear of any doctor who can accuse a patient of being paranoid. MS is a neurological disease. Sometimes, people who suffer from neurological issues aren't in their right mind. And a doctor tells a patient that they are being paranoid about drug companies? This is so far from my image of what a doctor is or what a doctor does that I just don't know what to say...

Hello All:

This discussion is fascinating! Thank you so much to all who are willing to share their knowledge and experiences.


I have a few questions and comments. Questions first. Please forgive me if they've already been covered. Sometimes I need to have things explained more than once....

1. Could someone please review for me the immediate reaction one might expect when they start on antibiotics. The more precise you can be the better. My interest is especially personal as I was on minocyline (briefly) on two separate occasions and both times I had "symptoms" which I assumed were MS. Now I'm not so sure.

2. Also could someone please go over again the difference between "bacterialcidal" and "bacteriostatic" in terms of long term treatment plans. I get what the terms mean. I'm not sure I understand the implications of how long one should take minocyline and when/if other drugs should be added to the regiment.

3. Those of us with MS occassionally get sick with
ordinary stuff, right? Are there other antibiotics that we might take for say sinusitis or a uti that could begin the "bacterostataic" process and then produce a short-term worsening of MS symptoms or the other things I'm asking about in question 1? I understand that a 10 day run of one of these drugs will not produce the desired results in terms of treating MS, but this is what I'm wondering: a) could they start the process inducing a "reaction" (question #1) and therefore be a window/indicator into whether or not a chlamydia pneumonia infection might be present? In other words, if I get lightheaded and fatigued on say amoxocillin, might that be telling me something?

I know these are somewhat basic questions. Thanks in advance to someone for humoring me with a response.

Now for some comments in regards to frustration with neurologists.

I have only been working with my neurologist since November of 03, and believe me I have been plenty frustrated with him from time to time. But he has told me not to believe anything I read from the drug companies. He's clear that they're out to make money and market their product. However, he still believes the CRABs have a positive benefit and uses them. Also, he is doing a trial with minocycline and seems to feel it has a positive benefit. The trial he is involved with pairs minocycline with avonex, but he told me he feels the minocylcine could probably stand on it's own and that if I have a wealthy relative let him know so he could trial it without biogen's financial assistance. I asked him if he thought it worked b/c of it's neuroprotective or antibiotic properties. He said, probably the neuroprotective. So, this is all to say, there are neurologists in the US open to minocycline (though I don't know if he would prescribe it apart from the trial he is conducting). If your neurologist is not helpful, KEEP SEARCHING (I know how hard that is). I think sometimes the neuros are so hesitant to look at new information b/c MSers have often brought a lot of "snake oil" ideas to the table (who wouldn't given traditional medicine offers so little!), but they've become so used to their "it's unproven" mantra, they don't know how to get out of it. Of course, this is unacceptable given the potential implications of the disease.

Sorry for they lengthy post! Please keep up the outstanding research and support.

-- Christy

Christy, I am very glad to hear that there are some neurologists out there who are willing to prescribe a tetracycline, irrespective of whatever reason they think it might help. At least, they are open to new treatments, which is the important thing.

From what little I know: there is supposed to be a bacterial component to MS. Depending on how long you have the disease, the bacterial load can be either high or low. When the bacteria die, they release toxins into your body where they mix into you and cause cell death. Depending on how many bacteria die, you get flareups of MS. If the bacteria start attacking and multiply, there will eventually be more bacteria that are killed off by your immune system and you will have a relapse. This also causes you great fatigue, since creating all the parts of the immune system is strenuous for the body and it takes a lot out of you.

When you start taking a tetracycline (Minocycline is one) then the bacteria start dying in droves. Now if the original bacterial load was high then an immense number of bacteria will die, releasing a large amount of toxins, and you will get a lot of flareup symptoms. If the bacterial load was low, a few will die, and you won't notice much. In a few days, these will all get flushed out and you will have damage from fighting the disease, but no new damage will happen. Eventually, your body will set to repairing this damage and depending on how good a job it does, you will start getting back function that you had lost.

If it is too late and the disease has "burnt" itself out, i.e. if your immune system eventually managed to kill off everything unaided, then the tetracyclines won't help, because there is nothing left to kill. Then it's a case of just letting the body build back, if it can.

Now, the tetracyclines are bacteriostatic, not bactericidal. The static part means that they don't actually kill off bacteria by themselves. They prevent the bacteria from multiplying. The immune system is continually killing off bacteria, so if bacteria are kept from multiplying, then the immune system will eventually get every last one.

However, some bacteria are marvels of evolution: when you start killing them off, they can retreat and turn into a spore-like thing that is still there. Your immune system doesn't recognize this new, innocent-seeming body, so it leaves it alone. When you stop taking a bacteriostatic antibiotic (recall that Minocycline is one), these spore-like things turn back into the original active form of the bacteria and the whole attack cycle starts over again.

That is why by itself Minocycline isn't enough. This also can explain why many scientists don't think that the tetracyclines are cures for MS and that the tetracyclines are "neuroprotective." Logically, it all fits in together. You give someone a tetracycline and they get better. (Remember that they won't get better immediately: for a few days to a week, they will get worse, but if the bacterial load was light, it won't be noticeable.) Then they stop taking it, and they eventually get worse again.

Now, if you take a tetracycline for long enough - not sure how much, but almost certainly it is in years - then eventually all the spores will also die naturally. They can never turn into the active form because as soon as they do, they can't multiply due to the bacteriostatic antibiotic and they get mopped up by the immune system. So, the disease will get flushed out eventually without causing further damage.

The other option is to take something that kills off the spores as well. Metronidazole (often sold as Flagyl) is such a medicine. But they have to be taken in combination. If you take only something like Flagyl, it doesn't seem to appear to kill the active bacteria. It might kill the spores, but that doesn't help because the bacteria seem to be able to avoid it.

I don't know the effects of Amoxicillin. It belongs to the penicillins, which are generally bacteriocidal. Bacteria have started becoming resistant to penicillins but Amoxicillin is an extended spectrum antibiotic that is active even against many such bacteria. I don't know if it is effective against the bacteria(s) that causes MS. The only thing I can say is that if you take it and your symptoms worsen immediately (like in 2-3 days) then it seems to work against the active form of the bacteria, but we can't say if it is working against the spore-like form.

I hope this helps. If you do decide to take Minocycline, please tell us how it goes. It is very important to share experiences because until someone can start conducting trials, all we have to go on is the anecdotal experience of individuals.

Christy, first of all here is an interesting bit of information I found in the "Pulling it all Together" thread, posted by Art of the Bostoncure organization:

Vince Macaluso in Flushing NY is a neurologist with MS. He's in midst of setting up a private practice so doesn't have contact info at the moment, but I can forward something to him if you want. Send to art-at-bostoncure-dot-org

Byron has already made a very good reply to your post, much gained from personal experience, but I will just add a couple of things.

My experience is with another tetracycline, doxycycline and this is largely national preference as far as I ca see. Roxithromycin was added to it, another bacteriostatic drug, because they work in synergy with each other and so increase the potency of taking just the one. Also roxithromycin gets into the brain far easier than many other antibiotics. It is not available for prescribing in the US for some reason. It isn't on the British list either, but it is available by ordering it from France. Some GPs won't even do this, but mine will.

Metronidazole is the bactericidal antibiotic, but as Byron said, not by itself: you have to throw it into a bacteriostatic phase first, then add metronidazole. You should be in no hurry to do this: I left 3 months before starting it, but longer will do no harm at all. When I started it, all my initial symptoms started to flare up again and I felt really tired, but I soon got over that. I took the metronidazole for five days at a time every 6 weeks or so and the first time I felt comparatively little change apart from the tiredness and the fact that it made me very tearful. The second time it really hit home, but gradually diminished until the last time, several weeks ago, I felt nothing apart from the fatigue and weepiness.

Now the plan is that I am gradually stopping the doxy/roxy regime but will take booster doses of them both every three months or so, three weeks a time, with five days of metronidazole added in the middle. (One must never take the etronidazole just by itself in this instance)

As for amoxicillin, none of the penicillins get into the brain in large enough quantities to be of much use, but one does not necessarily have a C pn infection just in the brain so one might expect the reaction you describe.

I have only been given antibiotics twice in my life before this; penicillin when a child, for scarlet fever and one a few years later, something for an infected insect bite. I don't know what and can't remember what sort of effect they had on me.

It is very good to know that there are some neurologists open to the use of minocycline. Perhaps if he sees it working he will be open to prescribing it more widely. It probably doesn't matter if he thinks it is only for neuroprotective reasons, because taken for long enough it should get rid of any pathogens. It is a start anyway and neurologists don't understand bacteria, apart from what they learnt in basic training, in some cases many years ago. Perhaps the man at the start of this posting will be more open to new ideas.

Sarah

You can purchase Roxythromycin here without needing a prescription:

http://www.freedom-pharmacy.com/Product ... romycin%29

It is a pharmacy located in Australia. I have had good results buying medicines from them.

It is always best to get a prescription for any medicine you take. They are restricted by law for good reason. Be VERY VERY VERY careful buying medicines over the Internet. I cannot over-stress how dangerous it can be to randomly put potent chemicals into your body. Among other things, take expiry dates into account, as well as temperatures along the route the medicines are being shipped - for example, have they been stored in the heat.

I was thinking of writing a cover letter, attaching Dr. Wheldon's work (and some of the stuff from Vanderbilt, etc.) and sending it out to 100 neurologists to see if any of them would be willing to work with me.

It might be worth the $40 just to see what happens.

Taken from my Regimens posting about C Pn.

Today, September 29th, is my first day of taking just one roxithromycin per day, with the aim of being off them within a couple of months, thereafter taking top up doses of doxy/roxy for three weeks at a time, with metronidizole added for five days in the middle, every two or three months, for a period yet to be decided.

This is all new, so I will just have to see how it goes and keep you informed.

Sarah

I posted a message looking for the same info Byron is asking about but I guess Anecdote and one other member where the only two going the antibiotic route at the time.

I know Anecdote is doing very well. Congrats. to her!

I have an appt. with U. of Mich. Neuro clinic tomorrow 9/30 , I have really been looking for this kind of info.

Anyone who has gone the antibiotic route.......please post SOMETHING about your response to treatment, good or bad!

Many thanks

Treez