This Is MS Multiple Sclerosis Community: Knowledge & Support

[SarahLonglands]

Treatment:

rifampicin, 300mg twice a day
or: doxycycline, 200mg once a day, but would have to be avoided during pregnancy
roxithromycin, 150mg twice a day (which could be substituted by azithromycin in the States)
B-12, 5000mcg sublingually every day
co-enzyme Q10 in large dosages
4000mg Fish Oil per day
Vitamins A,B,C,D,E, selenium and magnesium in large dosages
acidophilus, several capsules as required.

Also, five day bouts every three weeks or so of:
metronidizole, 400mg three times a day

Started with the immunomodulatary doxycycline before moving to the stronger rifampicin.

Treatment time aims to be non stop for a couple of years then back to doxycycline, which can be taken intermittently, taking three week courses every three months, with a week of metrononidizole during the second week.

The aim is to be MS free after this time, and so far I am succeeding, as my most recent MRI shows.

I must have had multiple sclerosis for about 15 years, looking back, in the relapsing remitting form, but the relapses were so minor, so far apart and so soon gone, that it never really occurred to me. As soon as I got over each attack I would forget about it and get on with life.

Things suddenly took a turn for the worse a couple of years ago though, when what was thought at the time to be a minor viral infection left me hardly able to walk across the room, with legs numb from the knees downward and severe vertigo. This somewhat cleared up after a number of weeks, but by no means completely. Then a major gynaecological operation a year later so traumatised my system that I began an inexorable downward spiral of SPMS. I was living in a kind of mental fog, not even realising how bad I was getting, until my first MRI scan and resultant diagnosis by a neurologist brought it home to me, in August last year: “secondary progressive multiple sclerosis. There is no treatment and no cure, so go home and find out what you can about the disease, see the MS nurse and then I will make an appointment to see you again”. This is not what an artist who had only recently finished the biggest commission so far in her career wants to hear, especially when she suddenly finds she has lost the use of her painting hand. Over the next few days I was completely distraught, thinking that I would probably never be able to paint again. What could I do? I began to realise that I was going so rapidly downhill and would soon have need of a wheelchair and worse. Well, I never did need that wheelchair or go to see the MS nurse and you can find out more by looking at:

http://www.davidwheldon.co.uk/ms_treatment.html

Back in August 2003, I could barely hold a paintbrush, never mind do anything with it. Now I can tackle a more than creditable full-page watercolour, (see below) and am getting more strength back by the day.

I had a second MRI scan a couple of months ago. The results of this were completely unexpected by the radiologist, who came rushing out of his room to show us the results. Not only were there no new lesions at all, but also the vast majority of the existing lesions were vastly diminished in both intensity and size. This is certainly not the normal course of events with someone with progressive MS.

Reason for this treatment:

Chlamydia pneumoniae as the supposed cause of MS

[Daunted]

I'm probable MS but I have a negative MRI and LP so no one wants to treat me until I have enough brain damage to make it obvious.

So, obviously, I'm interested in this antibiotic stuff. It looks worth a try to me.

Any practical suggestions on who in the US might prescribe these for me? I know the neuro won't be open to this. I can guess my GP doesn't want the liability associated with treating my MS without being directed by the neurologist.

I could order them all myself but then I'd prefer to be monitored by a professional who can order the appropriate tests to make sure I'm tolerating treatment well.

I thought of an infectious disease specialist...? Any ideas from anyone??

[SarahLonglands]

Hello Daunted,

A year ago I felt like I should be using your pseudonym instead of the one I chose! My husband is a medical microbiologist who did a lot of research in a very short time and put me on the treatment which is proving so successful. I think 'my' neurologist has now abandoned me.

In the US the main people to try are the team at Vanderbilt. Ram Sriram is the neurologist and Charles Stratton one of the microbiologists who first alerted him to the enormous similarity between MRIs of patients with MS and chronic Chlamydia pn infections. They have done most of the resultant research. I am not sure which of the two would be the best to contact in the first instance, but you should really do it via your MD, who can ask for any treatment sheets and do any testing him/herself, since they obviously will be much too busy to see anyone who might approach them. I should hhave thought of this in the first place, sorry, because even neurologists and microbiologists need to sleep! I will give you both their email addresses and leave it up to you, but I tend to think that Charles Stratton might be the one to approach first if your scan and lp results are at present negative. My husband David has by now become very adept at telling whether someone is likely to test positive even before the results come back.

It seems to me silly to wait until you show enough brain damage before starting treatment because it then takes you much longer to get over it. In my case, my subsequent MRI scan showed absolutely no new lesions and a vast shrinkage of the existing ones, but it will take me a few years before I am back to my normal self, cycling all day without feeling tired or walking vast distances on vacation. A year ago, though, I could barely walk the few yards to the nearest shop and I certainly could not hold a paintbrush without dropping it. Not much good for a professional artist!

Anyway, the email addresses are:
charles.stratton@vanderbilt.edu
subramaniam.sriram@Vanderbilt.Edu

The Vanderbilt team use antibiotics more readily available in the US. Roxithromycin is unavailable, although you can get it in Canada.

Good luck and please don't hesitate to contact me if you want further help or assistance.

Sarah

[Daunted]

I emailed the people you mentioned. The response was that they do not feel comfortable, based on the current research, with treating MS via detection of C. pnueomanie and subsequent treatment with antibiotics.

I wonder if their trial failed? There is obviously something up here- if the scientists producing the research won't implement their idea, who would?

Does anyone know of a single doctor anywhere in the U.S. who would implement this treatment? Or is known to be non-effective now and we are being encouraged simply by anecdotal reports?

I found this to be pretty discouraging.

[OddDuck]

Daunted:

I posted on July 1st under General Discussions, on the thread Chlamydia Pneumoniae about not getting too overly excited about all that. If you go there, you'll find my postings. I saw where folks were getting really excited, and I didn't want to put a damper on anything (as you'll see from my post), but I shared some information so people wouldn't get too excited, in case their hopes were dashed.

I was afraid word of mouth about this was creating more hype than what Dr. Sriram himself intended.

On another thread (I don't recall where exactly now - maybe the one on minocycline itself?), I posted where my PCP had mentioned to me (he's also on staff at Vanderbilt) how they had gotten pretty excited about their initial findings, but were not able to replicate the results with any real consistency or success. (I live here in Nashville.)

I think, though, that Dr. Sriram's research into C. Pneumoniae is still going on, it's just that there are no conclusive results yet that he can even speculate on at this time, nor anything anywhere indicative enough that he would recommend taking antibiotics for MS treatment. That's not to say it might not be helpful, but so far, there is nothing "earth shattering" yet.

Sorry.........

Deb

[Daunted]

Daunted:

I posted on July 1st under General Discussions, on the thread Chlamydia Pneumoniae about not getting too overly excited about all that.

Excuse me if this sounds grouchy, but I'm not "excited". I'm just interested in trying this as a possibility.

You posted a very good message quoting Dr. Sriram, in which he was appropriately conservative in saying that before c. PN can be considered a causative agent, a lot more research needs to be done. He (appropriately) put limits on what could be generalized from his experience. That doesn't mean we won't ultimately find that he is right, and that a subset of MS sufferers can benefit from antibiotics.

The negative findings you posted probably result from differences in PCR techniques more than anything else. This is well-debated in the literature.

In any case, my initial post was about HOW to get the treatment, not how well the treatment would work.

I'm a graduate student - I went to my University library and read all the peer-reviewed publications on this subject. And I concluded that it looks like it is worth a try. I'm not an idiot, so of course I figured out that results are inconsistent- as they are with all MS treatments, since it likely a heterogeneous disease.

I was afraid word of mouth about this was creating more hype than what Dr. Sriram himself intended.

Yes, there are several discussions and websites on the Internet about this topic. That brought this possibility to my attention. Then I evaluated the science to the best of my ability.

The assumption that I fell victim to "hype", I don't like very much.

I think, though, that Dr. Sriram's research into C. Pneumoniae is still going on, it's just that there are no conclusive results yet that he can even speculate on at this time, nor anything anywhere indicative enough that he would recommend taking antibiotics for MS treatment. That's not to say it might not be helpful, but so far, there is nothing "earth shattering" yet.

There's an ongoing placebo-controlled trial and the potential for a NIH trial in the future. Sriram is being very cautious, as he should. I just didn't think he would be so cautious as to refuse treatment to someone who wasn't in a clinical trial.

But yes, he can speculate, that's what they are doing in all their research publications.

None of this was news to me. And I don't know of any existing treatment for MS that is "earth-shattering" in the aggregate when closely examined.

Right now I'm in limbo, with a negative LP and MRI but the doctors tell me I have "early MS". In December I am scheduled to go for another MRI, and it's positive, they would offer me ABCR drugs. I'm not thrilled about waiting for brain-damage in order to receive modestly effective drugs, when antiobiotics can at least be tried with little risk (perhaps less risk than ABCR drugs).

In the meantime, since I am an adult, I would like to find just one doctor who will prescribe these drugs for me and monitor for safety.

I think the issue is liability, they are scared of getting sued for providing me a type of care that is unusual and/or unproven, if, God forbid, some antibiotics caused my head to explode or something. For right now, they would literally rather give me no treatment, than this. What this says about our medical profession, you can decide for yourself.

Any ideas on the topic of how I might get this treatment, would be appreciated. I'd travel within the U.S. if need be.

[OddDuck]

All I was trying to do was be compassionate regarding what you found here when you contacted Vanderbilt, is all. Believe me, I'd suspect that you'll find the U.S. to be the MOST conservative of ALL regarding prescribing things for actual MS "therapy" that is outside the ABCRs.

I think you put more meaning into my words than what was intended. People ARE excited about possible new therapies. And all I was pointing out was that as you yourself found out, you might only find yourself "discouraged" usually when trying to pursue those "new" or "proposed" therapies here in the U.S.

I think Harry can attest to this, also.

I apologize if you took my comments personally. I was feeling FOR you, not against you. I ALMOST was going to sort of warn you what you might face BEFORE you contacted Vanderbilt, but I didn't. I had "hinted" to everybody with my postings previously, so folks would NOT be discouraged or frustrated when they faced the prevailing attitudes from the medical field here in the U.S.

I would say, that you might find Canada to be a little "looser" with their attitudes regarding prescribing new things. That's the impression I get.

Again, I was only saying "I'm sorry" on behalf of the U.S.

Deb

[OddDuck]

Oh......also, remember, that here in the U.S., the medical profession is HIGHLY government regulated. The FDA here approves (or not) and regulates drugs and their uses, AND the circumstances under which doctors can prescribe them.

So....not only are the doctors here slightly intimidated by possible medical malpractice lawsuits from patients (which runs rampant here in the U.S. - there are hords of political issues going on with those legal aspects), they are severely regulated by government AND face ongoing struggles with insurance companies here. Not to mention the political minefield of the pharmaceutical companies, who do have a huge influence here in the U.S.

We patients here in the U.S. get extremely frustrated ourselves. Not to mention, how you'll find in reviewing not only this, but other MS Group Message Boards, we U.S. patients find ourselves jumping from neuro to neuro trying to find a good one who will work with us. In any event, we also have trouble getting the meds we want to try when we ARE patients of the doctors, and HAVE been diagnosed with definite MS. For any doctor here in the U.S. to prescribe a treatment to someone who is NOT their ongoing patient is inviting harsh legal ramifications and possible loss of their license (not from malpractice suits by patients, but from other avenues as well).

Again, I feel your frustration.....believe me. I wish you all the best.

Deb

[SarahLonglands]

I am very sorry, Daunted, for sending you on a wild goose chase. Perhaps I should have said ask your physician to contact either Charles Stratton or Ram Sriram for advise about antibiotics. Did you contact Stratton at all, or just Sriram?

The trial at Vanderbilt was in fact very successful, though very small: not enough people to be accepted by whoever. They were ultra careful about the people they picked, re: size of lesions at start up and so on in order that there could be no dispute. They are now in the process of setting up a larger scale trial but these things all take time to organise, and then even longer to get the results.

You posted a very good message quoting Dr. Sriram, in which he was appropriately conservative in saying that before c. PN can be considered a causative agent, a lot more research needs to be done. He (appropriately) put limits on what could be generalized from his experience. That doesn't mean we won't ultimately find that he is right, and that a subset of MS sufferers can benefit from antibiotics.

The negative findings you posted probably result from differences in PCR techniques more than anything else. This is well-debated in the literature.


There's an ongoing placebo-controlled trial and the potential for a NIH trial in the future. Sriram is being very cautious, as he should. I just didn't think he would be so cautious as to refuse treatment to someone who wasn't in a clinical trial.

I think the issue is liability, they are scared of getting sued for providing me a type of care that is unusual and/or unproven, if, God forbid, some antibiotics caused my head to explode or something. For right now, they would literally rather give me no treatment, than this. What this says about our medical profession, you can decide for yourself.

My guess is that they are so wound up in trying to get the next trial,underway, that they don't have the time to take on lots of new people who would not be suitable for the trial and feel it more important in the short term to concentrate on this, knowing that the sooner this and similar trials are completed, the sooner more people can benefit. In all fairness, one man can't do everything. I know how hard my husband works and how he feels for all his patients.

In any case, my initial post was about HOW to get the treatment, not how well the treatment would work.

My disease turned very rapidly from relapses so minor and so far apart that I didn't realise what was wrong, or even think that anything was wrong, to a very rapidly progressive disease. I didn't want to hang around, getting worse and worse, unable to paint and thus work, until someone somewhere came up with the results of a trial: I figured I didn't have the time and I could feel that there was something amiss with my normally sharp and acute mind. Luckily I was married to the right person: an interventionist not shackled by fear of ethics committees and law suits. Being the consultant microbiologist for our local hospital also helped.

I am afraid that neither of us know any US based physicians, but if I give you the following pdf files from my husband's website, you can print them out to give to your primary care physician. (Even here in England, many PCBs won't countenance doing anything out of the norm, so you might well find that you have to go it alone.) He is currently writing a paper co-authored by Charles Stratton, about some people he is treating here, for an assortment of chronic diseases including people with chronic fatigue and me with MS, but I can't let you see that yet until it has gone through all the peer review system and been accepted for publication.

http://www.davidwheldon.co.uk/cpn-treatment.pdf

http://www.davidwheldon.co.uk/cpn-ms.pdf

If you have no liver problems you should be fine with the treatment and it must surely be better to start before the MS gets too bad: brain damage starts early but the sooner the treatment is started the sooner you can start finding new pathways.

By the way, my head didn't explode! Or at least, it hasn't done so far.

The reference to Canada, by the way, was simply that certain drugs not obtainable in the US can be purchased from there. I know that there are several people from the US doing this.

[Daunted]

OddDuck, my apologies if I jumped down your throat. The tone of messages on the internet is often difficult to detect, and it looks like I misinterpreted yours. Again, my apologies.

I'm quite frustrated, because my intent was not to run off half-cocked here, but to get my CSF checked for c.PN BEFORE going on an antibiotic cocktail. That possibility has really been removed since the Vanderbilt team isn't willing to do that, it appears. So now if I proceed, I am forced to take antibiotics for a pathogen that may or may NOT be causing my symptoms. Not an ideal situation.

I'm actually quite in agreement with the rest of your post. I know there are constraints placed on medical doctors, which apparently means that they can be well-intended, caring doctors, and still not be willing to prescribe these drugs. For good reason, from their perspective.

Of course, my real opinion is that many of them are spineless. If it was their kid that had early MS, I would guess they would try anything they could think of...and this has enough support in the literature that it is worth trying.

Anecdote, thanks for your input, and you certainly didn't send me on a wild goose chase- I appear to have undertaken one all on my own!

My GP is cooperative and he will run tests when I ask for them, generally without explanation- he doesn't have time to listen to one, it seems like. So I can easily get regular Liver Function Tests and Renal Function tests and anything else I need, so it won't be out-and-out dangerous.

I'm more concerned about the difference between the Vanderbilt regimen and the one contained in the links you posted. I don't know much about biology or antibiotics.

I don't want to create a strain of antibiotic-resistant bacteria, for instance. I know they are trying all different kinds of regimens and some of those have publications behind them- the one you posted doesn't (although I'm glad to hear that a paper is in the works- would LOVE to see that when it is done being peer-reviewed.)

As a layperson, I don't know how to assess which regimen I should take. No offense to you or the good Dr,. but there is a lot of stuff on the net and it is difficult to sort it out. I guess that forthcoming publication could make all of this a lot easier to sort out.

Thanks for the responses!

[OddDuck]

Daunted,

Believe me! I know exactly how you feel! And I totally agree with you. No apologies necessary!

Hang in there.....

Deb

[SarahLonglands]

Hello Daunted and Odd Duck,

I have slightly revised the first post to include doxycycline, which I started with before the rifampicin, being slightly immunomodulatory.

I don't want to create a strain of antibiotic-resistant bacteria, for instance. I know they are trying all different kinds of regimens and some of those have publications behind them- the one you posted doesn't (although I'm glad to hear that a paper is in the works- would LOVE to see that when it is done being peer-reviewed.)

I can understand your worry about creating a strain of antibiotic resistant bacteria, but you have to understand that this is not a possibility, whether you choose the Vanderbilt regime or my husbands. Clinical microbiologists are fully aware of such dangers and would tailor any regime to avoid this. The difference in the two regimes is merely from the fact that roxithromycin is unavailable in the US. I'm not sure why, maybe it has something to do with it being French? It is not actually licenced in the UK, (though can be ordered by GPs and hospital doctors). we have discovered this is because the drug company was not interested in doing so, because newer macrolides had been developed. However its advantage is that it readily gets through the blood brain barrier and now so many people have started ordering it that the company keeps a stock of it in this country.

You know, I have never had a lumbar puncture to check for C PN in my CSF because it is not the easiest of things to detect and the way I was at the time, the stress might just have made me worse. The quote below tells you why, just substitute 'wife' for 'kid':

Of course.............If it was their kid that had early MS, I would guess they would try anything they could think of...and this has enough support in the literature that it is worth trying.

C PN is an incredibly difficult organism to culture due to its strange life cycle, so much of the time treatment has to be empirical, with well chosen and harmless antibiotics.

I am sure that if I had not shown such a rapid and marked improvement, not only would I by now be in a wheelchair bit also I would have insisted on stopping the antibiotics and trying caprivax.

(Just drink plenty of water and take the recommended supplements, especially the acidophilus and you should be fine with regards your liver and kidneys:I am.)

Best wishes,

Sarah

[Daunted]

(Just drink plenty of water and take the recommended supplements, especially the acidophilus and you should be fine with regards your liver and kidneys:I am.)

Best wishes,

Sarah

Sarah,

Thank you so much for taking the time to post this stuff. I can't tell you how much I appreciate it.

I have one other question- I am NOT asking for medical advice or advice about treatment- but I am just curious as to what tests are run regularly on people who are taking antibiotics. Are they the simple liver/renal tests you find on any lab sheet?

Thanks again.

[SarahLonglands]

Just a quick reply before going to bed, because I will be out most of tomorrow, photographing.

I guess the answer is yes. In the UK your GP refers you to the local hospital to have a blood sample taken, which is then sent away for whatever tests are required. I don't know how things work elsewhere.

Sarah

[slm214]

I am being given 100 mg. Minocin twice daily by a forward thinking GP who feels MS has bacterial origins. Specifically, a biofilm forms around bacteria and makes it difficult to kill. He also has me on Colustrum from New Zealand that works in conjunction with it. I think it makes sense adding the Flagyl and Zithromax as well. Have you looked into natural or integrative doctors. How about Homeopathic Physicians? Many of them cannot admit to hospitals, but still have their DEAs so they can prescribe. We have quite a few of them in Arizona.