Newbie Question about Abx

LifeOnTheFence · Posted: Tue Jan 03, 2006 10:06 am Post subject: Newbie Question about Abx

Am interested in the Wheldon protocol as it turns out I found out I had demyelination while complaining about chronic sinusitus and dizziness.

My question is I have to go off Rebif while I follow it ?

Katman · Posted: Tue Jan 03, 2006 10:55 am Post subject:

Welcome LifeOnTheFence

Please go to www.CPn Help. You are a prime candidate for abx and will probably find all your answers at that site. I WAS on Avonex, one of the other interferons. I have given it up completely. Please read my latest blog (katman)which discusses this particularly among other things. If you have any questions, ask.

Rica
_________________
EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

gibbledygook · Posted: Tue Jan 03, 2006 10:56 am Post subject:

I would keep on the Rebif (am myself on Avonex) as taking both shouldn't cause any problems. And the abx are still unproven in large trials whereas they have proved that the beta-interferons are modestly effective in preventing relapses. Good luck. Laughing

Anecdote · Posted: Tue Jan 03, 2006 5:17 pm Post subject:

Hello LifeOnTheFence, you can certainly stay on any of the CRABs whilst on antibiotics, they are not contraindicated. I have never been on any of them but many people have and continue to do so. Katman has recently given up Avonex, but Gibbledegook continues. Neither is preferable as long as you have no liver trouble. On the other hand, I did get immeasurably better just by taking abx and the recommended supplements. I was the first person to have the courage to come out and say so, but its your choice.

Sarah Smile

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An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.

LifeOnTheFence · Posted: Tue Jan 03, 2006 10:04 pm Post subject: Thank you.

I have been lurking here 9 months and find your stories helpful. I think I am ready to jump off the fence and get healed.

I am going to follow up on the links and hopoefully my GP will cooperate on the first visit. Any suggestions for what to bring him that is not too detailed, they don't schedule much time per visit?

Anecdote · Posted: Wed Jan 04, 2006 5:12 am Post subject:

This is an abbreviated pdf of the page done especially for printing. It is still ten pages long, but you could leave it with your GP:

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

For instant action in the visit, try this, because it was printed last June in a medical weekly (Hospital Doctor):

http://www.avenues-of-sight.com/Ignoring-the-evidence-1.jpg

http://www.avenues-of-sight.com/Ignoring-the-evidence-2.jpg

I have split it into two separate A4 pages, so you can print it out easily.

I don't know if you are in the US or the UK, but your GP is quite welcome either way to email David. His address is at the bottom of the ms-treatment page. I can also PM you Charles Stratton's address.

Best of luck! Smile

Sarah
_________________
An Itinerary in Light and Shadow
Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still slowly improving with no exacerbation since starting. EDSS was 7, now 2 or often less.

gibbledygook · Posted: Wed Jan 04, 2006 5:50 am Post subject: Rebit and abx

I have to confess that although I would stay on rebif if I were you, I myself after a year and a half on Avonex am contemplating stopping it. I feel that my progression is now contained and that coming off Avonex now might be helpful. Mind you, I've been on the antibiotics at least 8 months. So I feel my body has had time enough to stabilise and might now be better able to cope without the Avonex and may even benefit from removing this immune-suppressing drug. Yet when I started the antibiotics I felt I was going downhill quite rapidly and needed every medication I could throw at it. To conclude I would wait some time, say, 8 months, until you think the antibiotics are working before you stop the Rebif (unless of course this med makes you feel dreadful). Good luck.

Katman · Posted: Wed Jan 04, 2006 8:05 am Post subject: Stopping Avonex

What great news, Alex! I felt exactly what you describe. It has now been almost 4 weeks since my last shot and I have gotten better, not worse, though I expect temporary minor regression from the Flagyl pulse I am now in. I had reached a high level of physical ability and the Avonex was no longer lifting my walking to a higher level from its low each week, though admittedly each week from a lower starting point since I am PPMS and my decline was relentless. This is new evidence that there is life after Interferon! My neurologist does not believe that for an instant! I will not be going to him any more or any neuro. for that matter. I am delighted that you have reached a new level. It has been a long, difficult battle for you and this must count as a big breakthrough.

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

mrhodes40 · Family Elder Joined: Sep 24, 2004 Posts: 431 Location: USA

Also beta interferon is likely helpful in CPn infection This link is to a pubmed study that indicates the body probably makes beta interferon to assist tissue remodeling and modulate inflammationinthe lungs

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11750216&dopt=Abstract

Personally I am taking abx for three months now and still on copaxone. I have artheitis also and if I stop the cop the arthritis becomes unbearable=like cry all day long unbearable. It is in trials for arthritis, but I suspect as you do htat it's influence is to reduce my immune function. I anticipate at some point ia will stop it in order to let my body do what it needs to do, likely that will be when I can stop it without severe joint pain as I expect the arthritis to get better with treatment also
Marie

gibbledygook · Posted: Wed Jan 04, 2006 9:45 am Post subject:

Hi Katman!

To be perfectly honest I haven't had my injection for nearly 4 weeks now and during that time my spasms disappeared, reappeared briefly on a long haul flight and have again disappeared. Obviously this may be some kind of natural remission but it clearly didn't involve Avonex! Obviously I'm hoping it's the antibiotics! Mmm, still can't walk so good though!

Katman · Posted: Wed Jan 04, 2006 9:58 am Post subject:

My last shot was Dec 8 and only taken at my husband"s suggestion and I wanted to confirm what I had suspected for a few weeks- that I was benefiting less and less from the interferon. But I really believe that this is only further confirmation that we are curing the underlying infection that is causing our disease. Big, big thing. I am overjoyed.

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

Katman · Posted: Wed Jan 04, 2006 10:04 am Post subject:

I missed something in your last post about remissions - you thought this might be one. I don't have remissions and every time I hear that , I think "Oh, yeah, people do that".

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

LifeOnTheFence · Posted: Mon Jan 09, 2006 9:16 am Post subject:

My appointment is tomorrow at 3PM. I am ordering the vitamin supplements online today.

Looking forward to RENEWED LIFE.

Thank you for all of your kind help. Very Happy

_________________
Karen
Age 50

Sinus Symptoms dizziness/MRI shows multiple lesions 2002,
"Wait and See."
Dx 3/05
Rebif 4/05
David Wheldon Protocol 1/06

Katman · Posted: Mon Jan 09, 2006 7:24 pm Post subject:

Karen

Best luck tomorrow! I, for one, am holding my breath so let us know soon. I do hope your dr. is interested and will become involved. It helps so much not to have to look around! We are all cheering for you.

Rica
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EDSS at beginning of 43 months of antibiotics 6.7 now 2 - on good days almost normal

LifeOnTheFence · Posted: Tue Jan 10, 2006 5:20 pm Post subject:

SCORE !!!! Very Happy

My GP gave the scripts and took home the info. He was very interested in learning something new. He wanted me to get some general labs before I started the Abx but I don't even have to wait for the results.

THANK YOU everyone.
_________________
Karen
Age 50

Sinus Symptoms dizziness/MRI shows multiple lesions 2002,
"Wait and See."
Dx 3/05
Rebif 4/05
David Wheldon Protocol 1/06