This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone,
I have PPMS and live in NYC. My neuro and internist are supportive of me starting ABX treatment, but I can not find anyone who has prescribed the protocol before and who is comfortable with the stages and/or side effects.
First question- have you heard of a dr that treats in Manhattan or NYC?
I did get my CPN load checked by a blood test and Dr. Stratton said it was 'high', but I haven't been successful in getting him in touch with my neuro to discuss treatment as I think they lost funding for their research, so he may be working on something else.
Second question- the Stratton/Sri Ram protocol calls for Rifampin instead of Doxy?
I think Rifampin is stronger, harder to tolerate, but may work on mycobacteria?
I see the Wheldon protocol uses Doxy?
I'm so confused and have to make the treatment schedule myself and want to do it right.
Thank you,
Sangita

Hello Sangita,

I can put you both in touch with someone who has PPMS and who used to live in NYC and also a doctor who can treat, but unfortunately lives in Chicago: I don't know anyone nearer.

There have been two trials at Vanderbilt: the first used minocycline or doxycycline, I forget which, and the second rifampicin. My husband is Dr David Wheldon from Bedford UK. He treated me with doxycycline after finding Stratton's patent and then talking with both him and Sriram. He uses Doxycycline because rifampicin is reserved for TB in the UK, so people found prescribing it for unusual reasons are in danger of trouble from the General Medical Council. Also it is stronger and is hard to take for many people.

I took the full-time regime for a year before changing to intermittent therapy. I took doxycycline for six moths then rifampicin for the next six. Unlike doxycycline, rifampicin has no immunomodulation, so it can make it seem like things are getting worse again, for a while.

Let me know if you would like me to contact the people mentioned above.

Sarah

Hi Sarah, I really appreciate your response.
I would love to be in touch with the dr in Chicago+the person with PPMS.

One question I have for you was from your standpoint if I had the choice between rifampin or doxy which one should I go for given that my PPMS has progressed very rapidly? (2 years from diagnosis to wheelchair).

Thank you,
Sangita

Sangita, I'll ask them both if they mind you contacting them and then get back in touch.

AS for the question about rifampicin or doxy, since the first saim is to stop progression, my opinion is that it is probabl better to start with doxy because it is uch more easily tolerated. Many people that I know of who have started straight off with rifampicin have had a terrible time with it and can't manage the full dose for ages, I took doxy for six months first so I don't know how I would have been with rifampicin but even after six months it wasn't easy. The last thing you want is to have to give up.

Last thing, I would advise you to take off your email address: I have made a note of it. If a spammer gets hold of it, you will get enormous amounts of crap!

Sarah

Hi Sarah, that totally makes sense about Doxy. I have a long road ahead of ahead, so I should consider all things.
Another question, what do you think of Metronidazole vs Tinidazole? From what I've read of patient experiences on CPN.org, maybe better to start with tinidazole?
What did you do?
Thank you for the tip about posting my email address!
Best,
Sangita

Yes, I agree: tinidazole is more easily tolerated. I took metronidazole at first because it is more easily obtainable over here but I changed to tinidazole after a year because metro made me so depressed and weepy. Metronidazole was prescribed at first by Charles Stratton because tini wasn't licensed in the US. Now it is but metro is still less expensive.

Sarah

Sangita, I haven't forgotten you but everyone seems to be away at the moment!

Sarah

Hi Sarah,
I just had a few dr appointments (one with an infectious disease dr) and they are pretty much clueless.
I'm looking forward to being in touch with the Chicago dr.
Thank you for not forgetting about me!
From what I've read of your posts here and on cpn and your story on your husband's site, I feel like I know you.
It's an honor!
Sangita

Sangita, I'm blushing! Anyway, I am sending you a PM with the Chicago doctor's details.
Sarah

Hi Sarah,
Thank you for the info, I will let you know when I hear back.
Hope you had a wonderful weekend.
Sangita