Tempted by ABX - how to introduce with neuro/gp?

A forum for the discussion of antibiotics as a potential therapy for MS

Tempted by ABX - how to introduce with neuro/gp?

Postby Wonderfulworld » Sun Jan 04, 2009 6:01 am

Hi
I've been lurking for a while on ABX threads.

After the last few months with low-grade infections, the GP has finally put me on some kick-ass ABX, much higher dose than normal, and my god I feel so so much better. More mental clarity, more energy.

Have MS 10 years, RRMS, on Copaxone 5 years but extensive lipoatrophy on legs and backside. Had CPn age 11. Symptoms of MS started when I was about 12, but not diagnosed until 25.

Am curious about the ABX protocols.
How do you find a GP willing to listen to it, and to prescribe it?
I have been dismissed as a bit of a headcase/heartsink patient by some GP's because I asked about vit D or Hughes' syndrome - OHHHHHH challenging their god-like authority!!!

Any advice about how to get a doctor to prescribe ABX long-term? Or should I ask my neurologist - he is quite "human" but not sure if he is open to non-conventional methods of MS treatment yet because he is quite new.

What did you do?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Loriyas » Sun Jan 04, 2009 9:18 am

WW
I had tried a new neurologist here in town. He is somewhat unconventional and I wanted to get his take on how to treat MS. He is a big proponent of hyperbaric oxygen, which he owns several beds. So I kind of dismissed that as I felt he had a financial interest in that therapy and wasn't sure about it as it hasn't been backed up by much research as far as MS goes. However, he did prescribed minocycline to me. He wanted me on for 3 weeks then stop to see how I felt. Well, I felt so good during that time that I convinced his office to let me have another couple of weeks. It was because of the minocyline that I started to believe that antibiotic therapy was worth exploring further. This particular doctor would not go any further than the minocycline because he said "it is not an FDA approved therapy" (which I thought was ironic that he would say that because neither is hyperbaric oxygen) I talked with my own GP and although he wouldn't discount the possibility he also wouldn't prescribe it for me. So I posted on the CPn Help.org website that I wanted to go to Vanderbilt University as it was there that they were researching chlamydia pneumoniae as a culprit and were actually doing studies and prescribing the protocol. Several of the members at that site helped me and one in particular had been treated at Vanderbilt and guided me through the process of being seen there. As it just so happened Ken and Kim (notasperfectasyou) also made an appointment there with the same physician at about the same time as I did. So that is how I was able to get going with antibiotics. I am still being followed by a local neurologist, as well as my GP who has become a believer as he sees my progress.

I would suggest you start by asking your own doctors but make sure you are very well informed when you present it to them. Give them as much information as you can to convince them this is what you want to do and why. If you can't make it work with your own doctors then check around for a physician located near you who may be willing to work with you on this. If all else fails, make an appointment at Vanderbilt (unless you live close to there and want to go straight there)

My best suggestion, though, is to become as knowledgeable as you possibly can about antibiotic protocol. You need to understand it completely so that you 1) can convince your doctors and 2) be committed to the protocol as it is not easy to do.

Let me know how I can help you! Feel free to pm me if you would like.

Lori
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Postby Wonderfulworld » Sun Jan 04, 2009 1:22 pm

Thanks Lori, that is very useful.
You're right I need to study this carefully, really study it.
I will go through all the stuff on it and then consider where I feel I am with it all.
Just thought - my best friend's Dad is a doctor, and he always asks about my MS, he follows all the news about Tysabri to advise me!(I wouldn't personally touch Ty with a barge-pole) - he is so kind. He would be able to prescribe mino for me if I asked him. Thing is I have never asked him to do anything for me MS-wise because I felt awkward about it. I don't know if he would feel compromised about prescribing it for me, given that it is not approved. He is quite a conservative man, so I'd hate to make him feel under pressure to prescribe something he would feel was wrong. I dunno...

And the distance to Vanderbilt.......... :lol: ................given that I live in Dublin, Ireland that would run to thousands and thousands of sea and land miles. :lol:

Thanks for replying, off to read some more about abx/ms.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby Loriyas » Sun Jan 04, 2009 2:32 pm

Sorry, didn't realize you were overseas! I guess that option is not such a good one! And just so you don't misunderstand what I was saying regarding becoming completely knowledgeable: it is important for you to understand as much as you can but not to the detriment that you delay getting started just so you can be an expert-just know enough at this point to get a doctor on board to get you started. You can keep on researching as you go.

Asking your friend's father is a good idea. All you can do is ask and he can decide what he wants to do. Starting with minocycline is a least getting a start and it is such a commonly prescribed drug that he just may do it. And even if he won't go any farther with other antibiotics at least you have gotten something! Minocycline is very often prescribed long term to teen-agers for acne so it is not outrageous to use it long term. I would be surprised if he has an objection to that. Now if he doesn't want to write a prescription for anything to start with that is another story. But you never know until you ask.....
Lori
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Postby SarahLonglands » Sun Jan 04, 2009 3:53 pm

I didn't realise you lived in Dublin either. Not too far from us, then. Why not start by looking at this site and writing to David, whose mother was half Irish and whose address is at the bottom of section one:

http://www.davidwheldon.co.uk/ms-treatment.html

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby notasperfectasyou » Sun Jan 04, 2009 8:01 pm

Wonderfulworld,

Welcome to ABX. I think you'll find this is no picnic, but congrats on feeling better with a teaser dose. My thread on this is full of my frustration trying to get scripts. If we had not gotten into Vanderbilt, I think we would have tried this with online scripts. There is a fabulous support network here.

Ken
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Postby MacKintosh » Sun Jan 04, 2009 10:18 pm

Okay, here I am to say that, in my case, three years on the protocol has been pretty much a cakewalk and the treatment has been relatively easy and very, very successful.

Just trying to balance the presentation, Ken! :wink:

I figure I got cpn at age eight, or even earlier, but no presentation of MS for four decades, then I got slammed but good. Now, my 'big' complaint is my semi-numb middle toe on my left foot. This I can live with.
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby notasperfectasyou » Mon Jan 05, 2009 8:45 am

No, no. I simply think that one needs to be prepared for some complexity. AS you know for Kim and me, obtaining the scripts was way more frustrating that dealing with any of the side effects. Ken
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Postby Wallwalker » Mon Jan 05, 2009 2:37 pm

Hey!
I can only tell you how I would respond-GP for 16 years. Pick someone on your wavelength. Doctors have favourite/like/dislike patients and vice versa. Explain your situation- illness, no cure, difficult to deal with etc. Explain that you know of some people who have benefitted from antibiotics championed by Joe Average Doctors (no offence meant) and show evidence from Wheldon site.
The antibiotics are cheap and no different to those prescribed for long term acne so not likely to cause harm/resistance. "Would value your opinion Doc but have nothing to lose here and even feeling that I'm doing something is beneficial to my mental wellbeing."
DON'T demand, present huge wad of printed paper, get stroppy

Try another Doctor if result is negative.

If this works for me maybe I'll set up some kind of system- await events

Good luck :)
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Postby notasperfectasyou » Mon Jan 05, 2009 2:56 pm

Wallwalker wrote:get stroppy


Wallwalker, Welcome to TIMS. I definitely appreciate your interest. Kim and I made a Notebook up with lots of paper. we tried and got fedup with trying to find a doctor, maybe not stroppy enough?

What's stroppy?

Ken
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Postby MacKintosh » Mon Jan 05, 2009 10:14 pm

Ever the impatient soul, I couldn't wait for the response, so I googled it. Here's the first listed post:

stroppy adj. Chiefly British. , -pier , -piest . Easily offended or annoyed; ill -tempered or belligerent

Oh, heck, Wallwalker, that describes most of us, anyway! :wink:
The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi
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Postby notasperfectasyou » Tue Jan 06, 2009 7:41 am

MacKintosh wrote:Ever the impatient soul, I couldn't wait for the response, so I googled it. Here's the first listed post:

stroppy adj. Chiefly British. , -pier , -piest . Easily offended or annoyed; ill -tempered or belligerent

Oh, heck, Wallwalker, that describes most of us, anyway! :wink:



Oh, I understand, we call that Flagyl.
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Postby SarahLonglands » Tue Jan 06, 2009 8:02 am

WW, believe it or not I just this week came across a neurologist in England who was all too keen to try antibiotics for someone, after having read David's site and the two papers written by Charles Stratton and David. For some reason, he left it up to the man's GP to write the prescription, though.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Wallwalker » Tue Jan 06, 2009 2:20 pm

DON'T demand, present huge wad of printed paper, get stroppy

Sorry guys- I was not clear- Don't demand, dont present huge wad of paper and don't get stroppy. We're asking someone to prescribe an unlicensed medication. If they are not happy/comfortable doing that we have to respect their position- however much that pains us.
Will try to use mid atlantic prose in future Mac

Be well
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Postby notasperfectasyou » Tue Jan 06, 2009 2:29 pm

I rather liked learning new words. Stroppy is much more fun than metalloproteinases. Say that one 5 times real fast......
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