This Is MS Multiple Sclerosis Knowledge & Support Community

Next time they do a trial, I hope they use the protocol I'm using right now... including the Flagyl.

I think this would take too long to show a result for the 'powers that be'. I have a hunch that it might be offered to everyone after the initial trial is finished.

Sarah- I find this confusing! Is there a FASTER way to show results than the protocol I am using? (Amoxicillin/Zithromax or Doxycyline/Rifampin+Pulses of Metronidazole)...?

If one pulses the Flagyl more often than once a month, it would go faster, I assume....of course also assuminig that the bacterial load is small enough for the patient to be able to "take" this.

No, I was being a bit confusing there. Many people are of the opinion that CPn can't be completely eliminated from the body, because it tends to lurk around in dormant, non-reproductive mode for many years. Flagyl, taken in pulses will gradually clear it completely from the system, but many people still don't buy into this.

So, the main aim of a trial would seem to be to show CPn has been cleared from the CSF, because that is what the people funding the trial want to see. In dormant, intracellular mode, even just a few pathogens might still be there, but effectively invisible, hidden within the host cells. The courses of flagyl aim remove the pathogen over time as it reactivates. Once you move from constant treatment to sporadic treatment, any remaining pathogens will get the chance to spring to life between the pulses of antibiotics. So you start with doxy/roxy or whatever, then introduce the bactericidal flagyl after a week. Eventually you should be entirely free, but this is why the entire course of treatment takes so long. You can't guarantee to do this entirely in six months, but people who fund the trials want results quickly. Which is why I made the assumption that in order to make sure it is gone for good, everyone in such a trial might be offered the flagyl after the initial basic trial. On the other hand as the flagyl pulses become more acceptable, these protocols might change. I hope that they will.

Sarah

Still playing the devil's advocate....

If CPn causes MS why would pregnancy reduce symptoms and relapses?

Well, I guess that if you are pregnant, the prime aim is to remain so, and for this reason immunosuppression comes to the fore. It should also be remembered that after pregnancy, a relapse, sometimes very severe, very often follows, when the CPn is once more able to run riot.

On another question, have you checked your email recently, Daunted?

Sarah

Anecdote wrote:Well, I guess that if you are pregnant, the prime aim is to remain so, and for this reason immunosuppression comes to the fore. It should also be remembered that after pregnancy, a relapse, sometimes very severe, very often follows, when the CPn is once more able to run riot.

On another question, have you checked your email recently, Daunted?

Sarah

Sarah,

I'm catching up on email today! Things have been crazy.

I am pulsing Flagyl (Metronidazole) for the 2nd time on Monday. I'm very curious to see how that goes.

Sarah,

In the account of your treatment progress Dr. Wheldon writes that you developed a secondary porphyria. I have been unable to find much regarding this on the web.

Are there additional symptoms to a secondary porphyria that are not listed on the ms_treatment web page?

In particular I am wondering if shortness of breath, severe abdominal pain (induced when the body is heated up through showering or exercising), myalgia and leg weakness (different, somewhow, from the usual symptoms)....are considered possible symptoms of secondary porphyria?

I have noticed, of late, that my symptoms are exacerbated considerably when I use alcohol, and eating a steak recently did the same thing. While this doesn't make any sense as regards demyelination, it does make sense if I am exacerbating a secondary porphyria reaction, no?

Daunted,

Yes, I would say so. Here is a small list of things which I suffered from for a while. Well, no, I still do intermittently, I suppose.

Reddish or bluish urine difficult to tell if on rimampicin! Actually showed more as a kind of manila.
Sensitivity to sunlight
Crampy abdominal pain
Pain in the limbs and back
Numbness or tingling of a different quality than what I had just got rid of with MS
Muscle pain and weakness

I don't think alcohol affected me and then we very rarely ate red meat, so I can't say about that. Now I eat the occasional steak or lamb cutlet, as long as it is organic and free-range, for protein, since so much fish can be rather iffy as far as toxins go.

I'm not sure how much to attribute these to a secondary porphyria. I for a few days showed a 'butterfly rash' across my upper cheeks and nose, typical of lupus, like a ghost of something that might have been, but it went and never returned.

Sarah,

I have been throwing a question around in my head for a while now and wasn't sure where to post it , so I decided to find your most recent post and pose my question here which seems appropriate considering that you were just addressing side effects of your antibiotic regimen.
Are the side effects of the antibiotics so severe that they would likely prevent me from being able to continue working? I work 3 days per week and could possibly do the Flagyl pulses on the other 4 days. Do you know of anyone who manages to work through this course of treatment?
Is David ever planning to try to stop treatment at some point or is the plan to continue the occasional refresher courses periodically for life?
I've read a little about treating Lyme disease in this manner and the suggestion there seemed to be that treatment continue for several months after symptoms were gone and then to discontinue the antibiotics.

Another question that has been on my mind I'm not sure if you can answer, but maybe someone else can if you can not. Is there any difficulty in having perscriptions from a physician in one state and having them filled in another where no one knows that doctor? Aren't physicians licensed to practice only in their own states? How does that work? Have any US patients had any success finding D.O.'s ( Doctor of Osteopathy) in their local areas who are willing to oversee an antibiotic regime?
And finally , what is the US National MS Society's position- or the UK's for that matter- on antibiotic therapy? With all the info on Minocycline and David's treatment protocol and so many stories of successful treatment one would think that our national societies would be doggedly pursuing/investigating this line of treatment.

Thanks,
Tracy

MrT wrote:Sarah,

I have been throwing a question around in my head for a while now and wasn't sure where to post it , so I decided to find your most recent post and pose my question here which seems appropriate considering that you were just addressing side effects of your antibiotic regimen.
Are the side effects of the antibiotics so severe that they would likely prevent me from being able to continue working? I work 3 days per week and could possibly do the Flagyl pulses on the other 4 days. Do you know of anyone who manages to work through this course of treatment?
Is David ever planning to try to stop treatment at some point or is the plan to continue the occasional refresher courses periodically for life?
I've read a little about treating Lyme disease in this manner and the suggestion there seemed to be that treatment continue for several months after symptoms were gone and then to discontinue the antibiotics.

Another question that has been on my mind I'm not sure if you can answer, but maybe someone else can if you can not. Is there any difficulty in having perscriptions from a physician in one state and having them filled in another where no one knows that doctor? Aren't physicians licensed to practice only in their own states? How does that work? Have any US patients had any success finding D.O.'s ( Doctor of Osteopathy) in their local areas who are willing to oversee an antibiotic regime?
And finally , what is the US National MS Society's position- or the UK's for that matter- on antibiotic therapy? With all the info on Minocycline and David's treatment protocol and so many stories of successful treatment one would think that our national societies would be doggedly pursuing/investigating this line of treatment.

Thanks,
Tracy

I'm not Sarah but I can help with at least one of the questions.

My doctor, Dr. Powell, is a D.O. in California. I do not live in California and I have had no problem filling his prescriptions...especially since I use a service like Walgreens.com or Costco.com.

My impression, in general (and no offense to David Wheldon MD) is that D.O.s are just better doctors. They certainly are more open minded in my experience. Seeking out a D.O. isn't a bad idea. Although I am quite partial to Dr. Powell, who uses this protocol routinely and hence can answer questions with some experience under his belt, whereas even if you persuade a doctor to write the scripts, you will be on your own if they haven't done this before.

To the credit of the NMSS, they have funded some work at Vanderbilt. But they are very, very cautious and it will probably years before they endorse any antibiotic treatment enthusiastically.

I'm not Sarah but I can help with at least one of the questions.

My doctor, Dr. Powell, is a D.O. in California. I do not live in California and I have had no problem filling his prescriptions...especially since I use a service like Walgreens.com or Costco.com.

My impression, in general (and no offense to David Wheldon MD) is that D.O.s are just better doctors. They certainly are more open minded in my experience. Seeking out a D.O. isn't a bad idea. Although I am quite partial to Dr. Powell, who uses this protocol routinely and hence can answer questions with some experience under his belt, whereas even if you persuade a doctor to write the scripts, you will be on your own if they haven't done this before.

To the credit of the NMSS, they have funded some work at Vanderbilt. But they are very, very cautious and it will probably years before they endorse any antibiotic treatment enthusiastically.

Hello Tracy,

Here are hopefully a few answers!

Are the side effects of the antibiotics so severe that they would likely prevent me from being able to continue working? I work 3 days per week and could possibly do the Flagyl pulses on the other 4 days.

I think this depends on the individual person, their antibiotic load and to a certain extent their age. I work from home, but it is still work. Most of the time I was able to carry on. Some other people manage even more easily, others not, I can't say anymore.

The plan is to keep on the booster doses for a couple of years and then decide. This will partly depend upon my confidence to stop, along with what has been learned in the interim, remembering that if at any time I feel any symptoms coming back, I can restart.

As for your question about prescriptions, I am probably not the best person to answer. In this country it is slightly different, in that some doctors in any part of the country can and will fill a prescription, but others simply won't. As for our MS society, I think antibiotics are a dirty word. Strange, but true.

Take care,

Sarah

PS: I didn't notice your reply, Daunted, but our two replies both seem to complement each other. No offence taken about David Wheldon, FRCPath, either!

Daunted and Sarah,

As always, thank you for your very informative responses. So many considerations , so many questions. I guess I just need to bite the bullet, get off the fence and go for it. I think my first course of action will be to attempt to find someone local who will be willing to embark on this regimen with me. If that proves unsuccessful I'll request further contact info at that point.
Have a great weekend all.
Tracy

Of interest? They focus on the STD chlamydia but they probably don't realize that the vaccine for CPn is probably of more impact.


Secures Exclusive Rights to Unique Chlamydia Vaccine Candidate
Targeting Potential Billion Dollar Market Opportunity

GAITHERSBURG, Md., May 25 /PRNewswire-FirstCall/ -- BioVeris Corporation (Nasdaq: BIOV) announced today that it has entered into an option agreement with the University of Massachusetts at Amherst (UMA) for exclusive patent rights to a unique vaccine candidate for Chlamydia, the most frequently reported infectious disease in the United States.

Under the agreement with UMA, the Company acquired a first option for exclusive rights to commercialize products for possible use in the prevention, diagnosis and treatment of all chlamydial infections, including the disease, chlamydia, caused by the bacterium, Chlamydia trachomatis.

The Company and UMA also entered into a separate Sponsored Research
Agreement under which the Company will sponsor up to $600,000 of research at UMA through 2006 aimed at developing a vaccine candidate. If the Company exercises its option for exclusive rights to commercialize products, it will pay a license issue fee, as well as milestones fees for initiating and completing human clinical trials and securing regulatory approvals, and royalties on product sales.

Dr. Lloyd H. Semprevivo will lead an alliance of scientists at UMA,
including Drs. Elizabeth Stuart and Wilmore Webley in the continuing effort to develop a vaccine for Chlamydia. The vaccine under investigation utilizes a pan-genus antigen that should be effective in preventing infections caused by most or all species of Chlamydia. Dr. Semprevivo said, "My colleagues and I are extremely pleased to have the opportunity to collaborate with the premier group of vaccinologists at BioVeris."

"We continually seek partnerships with leading universities and research
institutions when we believe their research has significant potential
commercialization opportunities in either diagnostics or vaccinology," said
Dr. Richard Massey, President and Chief Operating Officer of BioVeris. "UMA has made significant progress in their research of a vaccine candidate for Chlamydia. We look forward to supporting their continued efforts on the vaccine candidate, and to potentially commercializing products that would meet the needs of this market."

Chlamydia is a sexually transmitted disease caused by Chlamydia
trachomatis. According to the Centers for Disease Control and Prevention, Chlamydia is the most frequently reported infectious disease in the U.S., with estimates of nearly 3 million cases annually, resulting in a total healthcare cost, estimated by the Institute of Medicine, of more than $2 billion.

Although antibiotic therapy is available, Chlamydia is a "silent" disease,
showing no symptoms in three quarters of infected women and half of infected men. If left untreated in women, 40% of the infections will cause pelvic inflammatory disease with permanent damage, resulting in chronic pain, infertility and potentially fatal ectopic pregnancy. Infected pregnant women may transmit the infection to the eyes and respiratory tracts of their newborn, resulting in pneumonia and conjunctivitis. It has been estimated that by age 30, half of all sexually active women have been infected.

Screening is recommended annually for all sexually active women under 26 years of age, as well as older women with certain risk factors and all pregnant women.

There is no vaccine currently available to protect against Chlamydia. The
UMA vaccine technology would be expected to cover all chlamydial infections, including those caused by Chlamydia psittaci, which often results in pneumonia and endocarditis in humans, and Chlamydia pneumoniae, which is responsible for some pneumonia, bronchitis, pharyngitis, laryngitis, and sinusitis.

In addition, C. pneumoniae infections have been implicated by some investigators to be associated with atherosclerotic vascular disease, Alzheimer's disease, asthma, and reactive arthritis. The future market for worldwide sales of Chlamydia vaccines has been estimated by industry analysts to exceed $1 billion annually.

BioVeris Corporation is a global integrated health care company developing proprietary technologies in diagnostics and vaccinology. The Company is dedicated to the commercialization of innovative products and services for healthcare providers, their patients and their communities. BioVeris is headquartered in Gaithersburg, Maryland. More information about the Company can be found at http://www.bioveris.com .

I think that a vaccine for CPn is what Stratton is aiming for. It would be wonderful because it would put a stop to so many debilitating diseases.

Hi Sarah

You mentioned sun sensitivity as one of the side effects of Doxicyclene. I've noticed this as well and am currently looking like a beetroot. Did you manage to find a good sunscreen that doesn't turn you milk bottle white?

Jim