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I have been reading with great interest about the folks using the abx protocol and I cannot find the answer to my question here or on the CPN site. I know that many people have been on both abx and another therapy jointly. My question is, was there ever a time when that other therapy actually worked for your MS? I have rrms and was considering asking my doc about the abx protocol. I do know that when I was first diagnosed, and I started rebif, my bladder symptoms got better really fast. And the tingling in my legs also disappeared. Would this suggest to anyone that if I responded to the rebif, then I wouldn't have cpn?

thanks in advance!

I just came across this post. Perhaps if you put it in the antibiotic thread it might receive some comments. Many people probably missed this.

avsig wrote:I have been reading with great interest about the folks using the abx protocol and I cannot find the answer to my question here or on the CPN site. I know that many people have been on both abx and another therapy jointly. My question is, was there ever a time when that other therapy actually worked for your MS? I have rrms and was considering asking my doc about the abx protocol. I do know that when I was first diagnosed, and I started rebif, my bladder symptoms got better really fast. And the tingling in my legs also disappeared. Would this suggest to anyone that if I responded to the rebif, then I wouldn't have cpn?

thanks in advance!

No. It doesn't mean you don't have cpn. The reduced symptoms are due to the anti inflammatory effect of rebif.

The idea of doing abx while using a dmd or other immunolodulating drug is interesting. I wonder if it would lessen the misery...and if the abx would be as effective without inflammatory immune system support. I'm sure someone has tried it. The tale may be buried here at tims.

Ok I'll put it there. thanks for the responses!

I answered in the Antibiotics forum, but for people who never look there, I'll post my answer here as well:

"No, DMDs work for people if they have RRMS, but it can still turn progressive. The theory is that MS is started in he first place by a pathogen and many people believe the pathogen to be C pn. Others believe it to be EBV. I had progressive MS and I had a C pn infection. I took the relevant antibiotics and my MS stopped: I regained the use of my paralyzed right arm and of my formerly bright brain. I have had no new MS symptoms since starting, ten years ago. I finished antibiotics in 2007.

If by your doctor you mean your neurologist, there is very little chance that he will support abx and your GP will usually tend to follow the neurologist's opinion. Sometimes, though, they are more adventurous: especially if you give them this site to read: http://www.davidwheldon.co.uk/ms-treatment.html, or maybe the pdf file on the site. "

I think that one of the reasons that many people with relapsing remitting disease find abx easier is because they are still taking DMDs. Having had progressive disease ever since I was 'officially' diagnosed, I wouldn't know because that path wasn't open to me. Sarah

Hi Anecdote. I'm new to the site, here because of my adult son's recent diagnosis of MS. I apologize if this question has been asked of you before, but have you posted or do you recall your exact treatment protocol? I ask this because my son is soon to confer with an LLMD about a course of treatment for Lyme. I am aware of the controversy surrounding the treatments for both Lyme and Cpn, and have researched both. I know that the Wheldon, Sriram, and Stratton protocols for Cpn are lengthy and involve several antibiotics, one of which can be doxycycline, also used in the treatment of Lyme. I also know that minocycline and doxycycline are of the family of tetracyclines, and sometimes used interchangeably for certain conditions, with minocycline being the more lipid-soluble and thus the one with greater penetration into the CNS. My son had "band 23" present on some of his tests which leads him to believe he has Lyme, hence the upcoming conference. Alternately, the Stratton protocol suggests supplementation with NAC to test Cpn bacterial load. My son supplements with NAC for its other benefits and has shown no indication of any degree of bacterial load. I am not convinced he has either Lyme or Cpn but I do not discount the possibility he has one, or both. Further testing for confirmation for either doesn't seem advantageous. Here's the point: Minocycline seems to be effective in treating MS, whatever it is. My son seems adamant about being treated for Lyme, which will, from preliminary talks with his doctor, appear to take on the order of 8 to 9 months. (Seems excessive to me.) Treatment for Cpn lasts a year. My thinking is that if my son opts for this lengthy treatment, is it feasible to start with minocycline instead of doxycycline, and then blend the similar protocols for Lyme and Cpn into one safe and effective treatment against both. Antibiotics are not without risks, and I have approached this all from a "risk-reward) perspective. Again, your exact protocol? Thanks. P.S. No DMD's as of yet (risk-reward), and I lean towards EBV.

You seem to have done a lot of research for your son and I hope he will thank you for that. However, if he is adamant that it is lyme, in my mind he can't do far wrong in taking the lyme treatment since C pn treatment is very similar. There is as yet no real treatment for EBV and things take a long time to change, medically. It must have been back in the early seventies that David studied under Epstein of EBV fame. I was still in ankle socks then.

I remember my treatment well: it only started 10 years ago and the best place to look is on David's MS website. There is a neat pdf file which can be easily printed out. Whilst there are many different treatments for lyme, if your son has a doctor who treats for lyme, I would suggest that he sticks with his protocol: nine months is not a long time.

Sarah