medication

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medication

Postby Dahlia » Wed Sep 28, 2005 1:30 am

Dear all, diagnosed in April 2005. Stopped crying in June 2005, and have been on the SWANK + no wheat diet since April. Was already a vegetarian. I have seen 2 neurologists, 1 said go on rebif - the other said you're too well for medication, come back in 1 year. I am hoping to stay off treatment until I have an o/s holiday next year - don't know if this will be possible? Is there anyone out there that has been managing their MS with alternative treatment (no CRABS), for a fair duration of time - and is doing OK? MSER's please give your advice/thoughts.
thank you, :D
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Postby Arron » Wed Sep 28, 2005 1:37 am

Hi Dahlia, welcome to the site... you'll find lots of people trying different strategies in the Regimins section of this forum. Welcome to the site!
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Postby MacKintosh » Sun Mar 05, 2006 7:19 pm

Dahlia - I, too, am an early diagnosis and a zero on the EDSS scale. I was terrified on 19 AUg 2005, the day I was diagnosed, and I spent nearly two weeks reading on the net non-stop. I came to the conclusion I did not believe in the autoimmune theory, which meant it had to be some kind of disease. Then I found a reference on ThisIsMS regarding an experimental drug for MS that was really antibiotic-based. That leads to a google search for "antibiotics MS". I found Sarah Longlands and Dr. David Wheldon. She posts here on ThisIsMS under the name 'Anecdote' because doctors keep telling her her cure is purely 'anecdotal'. There are dozens of us doing antibiotic therapy and I have not yet seen one person who is not having results, be they simply okay all the way to outstanding. I have been doing it for five months (today is the 5mo anniversary, actually) and what I know is I have not experienced any progress of the MS and most of my bizarre symptoms have vanished. Numb fingers and toes are gone, draggy feet, useless shins, slight slur in my speech, gone. And the brain fog, where your thought processes just bog down.... gone. Come check us out. We have a bunch of medical professionals not only contributing to the site, but also as patients. I'm no zealot in most areas of my life, but I really believe we've hit on the answer here. And it's not a bunch of wishful thinking; this was started - and continues - due to the work of a group of amazing doctors at Vanderbilt University. We don't post much here anymore, since we have all the resources we need at CPn Help.org - - - medical studies, referral information, support forums, you name it. I promise you it's not pie-in-the-sky.
Last edited by MacKintosh on Sun Mar 05, 2006 9:38 pm, edited 1 time in total.
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 Katman » Sun Mar 05, 2006 7:52 pm

Hi Dahlia

Mack and I follow each other around! We would very much like to have you come to www.CPn Help.org to learn more about our therapies. I was a 6.7 on the disability scale and am now 2.5.

Rica
2010 5 years 4 months Now on Amoxicillin, Doxy, Rifampin, Azith, and caffeine in addition to  flagyl. 90% normal good days-50% normal bad days. That is a good thing.
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Postby remnants » Mon Mar 06, 2006 11:03 pm

Hi Dalhia,

I was diagnosed in June 2004. I have never taken any of the CRABS, steroids etc. Initially I followed the Swank Diet, but now only follow the recommendations loosely. Currently I take 4.5mg of LDN along with many nutrional supplements. Since I began the LDN in December 2005, I have not had another exacerbation nor any continued progression. Prior to taking LDN, I was progressing rather quickly. However, I definitely believe it is a combination of diet, supplements and LDN that have prevented additional exacerbations rather than any one thing.

While I haven't experienced further progression, I have not experienced the symptom relief others have reported with LDN. As a result, I will definitely consider an abx protocol before any of the currently available MS drugs - including Tysabri if it returns.

If you read some of the older MS research and/or books on treatment options, I believe you will find that there were indeed many patients who were able to manage their symptoms via natural remedies. However, you must always consider the possibility of natural/spontaneous remission when evaluating any MS research. In addition, for each success there were most definitely unreported failures.

In addition to the materials on this site and CPn Help.org, I recommend that you visit the site Remedy Find where patients rate the effectiveness of their treatments.

Best of Luck & Keep Researching!

-Cindy
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- E.B. White
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Re: medication

Postby JFH » Tue Mar 07, 2006 8:13 am

Hi Dahlia

Dahlia wrote:... you're too well for medication, come back in 1 year.


That to me seems v. strange. :? My understanding of the CRAB DMD intervention is that the earlier you get in there the better the outcome. Others here may have a view on this?
John
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Postby MacKintosh » Wed Mar 08, 2006 1:26 pm

JFH - My new neuro said he would take a wait and see attitude on suggesting CRABS in my case, as I am so early along he doesn't feel I even qualify for an MS diagnosis (one episode, a couple of unremarkable lesions and one oligoclonal band). I took the bull by the horns way before I saw him, though, and started antibiotic therapy right away. I do NOT intend to get to the point of NEEDING any other drugs. I plan to kill the infection in my brain before it does any real damage.

A qualifier; my neuro is renowned for his work in MS. My initial, diagnosing, neuro is 33yrs old and wanted me on Copaxone instantly. He was quite disgusted with me when I politely declined.
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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