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Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Fri Dec 26, 2008 7:46 pm Post subject: Antibiotics don't work on MS?
Gosh, you'd think, as quiet as this topic has gotten, that antibiotics don't work. You'd think we slunk (is that a word?) into the night, ashamed to admit defeat to MS. You'd think none of us had improved on the Stratton or Wheldon protocols and we just stopped posting, because we didn't want to admit it publicly.
Well, I'm here to remind people that few of us post here anymore because 1) we're so busy in our improved health and demanding lives and/or 2) we're posting on that other site dedicated solely to chlamydia pneumoniae bacteria and its treatment for MS, arthritis, rosacea, alopecia, chronic fatigue, fibro, asthma... and we have less time to come here and duplicate our posts, and/or 3) we've decided to quit abx and go dabble in something else. (I only know of a couple who've gone that route, but I'd be unfair if I didn't at least broach it.)
At three years, two months of abx protocol, I'm probably 98% recovered from what appeared to be an unrelenting series of MS symptoms that were multiplying exponentially. I'll be tapering off to intermittent therapy very soon, then stopping altogether. I've learned so much along the way - about medicine and neurology and people and determination. It's been a whole new world. (Sure beats how small and closed off my life was surely becoming when I was first diagnosed and sliding downhill.)
Thanks so much to ThisIs MS, where I first learned of antibiotic therapy by reading a teeny little news story about a teeny little company pursuing an oral medication for MS, a medication based on antibiotics. This led to finding Sarah, who posts here as Anecdote, and her microbiologist husband, Dr. David WHeldon. Through Sarah, I met my incredible doctor, who has actually 'done' the protocol and has totally recovered from MS, and Jim Kepner, who founded the cpn help website.
Antibiotics work on MS. Well. And often. Too often to be a fluke (or an anecdote, Sarah).
Happy almost-New-Year, everyone! _________________ 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
Well, you forced my hand, and after not posting here for- EVER, here goes.
My husband,(MS dx'd in May 2004) is chugging along quite nicely. He has been on antibiotics for almost 3 yrs (remembering the 3-5 yr. recommendations by experts).
He feels he is at about 85% overall, and still trending upwards with slight dips while on certain abx.
His regimen consists currently of 3 weeks on 3 weeks off with one loong break of about 6 weeks where he felt awesome (90-95%). Feeling quite good off the meds is a great development, and seems to show he has this infection under control.
He has suffered no ill effects from long term abx use (OHHH those scary abx ), and has been on a bunch of different combinations. Many of which are not the anti-inflammatory kind which could make some people think his good health and improvement might be attributed to those-i.e. minocycline/doxycycline etc.
He has suffered from some awful die-off. One round of biaxin and plaquenil last Christmas had him writhing around the house with pain in his sacrum and right hip......no fun, but a funny thing did happened after this pain....some small issues he had with his right leg cleared up. This has been the general pattern (not always quick, though). Die-off, suffering and improvement in past symptoms. Not to be confused with resolution of exacerbation where symptoms disappear, but actual improvement.
MRIs have been stable with improvement seen in a couple. Some spinal cord lesions disappeared on the last one, but the radiologist said they might have originally been artifactual-which meant he was saying they were never really there.
My husband is out living his life, doing his job etc. The 37yr old lady up the street is in a wheel chair after Novantrone treatment, and electrodes planted in her head, currently taking Tysabri (she's spms so I don't know why!), getting worse daily, husband wants to get a divorce.
So MacK, I guess you are right-abx doesn't work in MS.
But it did work in my husband's MS, oh and my sister's too. Oh yea! and yours, and Sarah's and Rica's and even for Daisy's husband and Joyce's husband too. Oh, and Life on the Ice's. There are others I know.
My thanks too to Thisisms, Sarah, David, Mack, Life on the Ice, Rica, JimK who got us started. First my husband got his hope back, and next he got to keep his life. Not too shabby for MS.
Joined: Feb 10, 2006 Posts: 777 Location: Northern Virginia
Posted: Sun Dec 28, 2008 8:53 pm Post subject: Hey!
I'm still here posting. Am I doing something wrong? Am I supposed to stop posting here at TIMS?
My goal, here at TIMS, is to leave a fairly complete roadmap for others. To explain the things we run into and post the things we try. Ken _________________ My Starting Point
Understanding MS 101: Doctor Talk and People Talk<br /><br />
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Sun Dec 28, 2008 11:20 pm Post subject:
Ken, There hasn't been NEAR the volume of posts here on antibiotics that there used to be. That's why I posted. It was simply a reminder to folks who might be perusing the antibiotics topic that we ARE alive and well and most of us are recovering nicely.
You're not 'supposed to stop posting here'. It was a tweak to remind us to post here more frequently. _________________ 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
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Mon Dec 29, 2008 5:47 pm Post subject:
Sojourner, Never been called a scamp before, but I kind of like it! I wore high heels to every Christmas party this year. I will never forget the feeling, three years ago, of thinking I'd never be able to wear them again. Actually, I was walking so oddly, I was wondering how long I'd BE walking, at all. _________________ 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
I never really posted a great deal due purely to laziness, however, recently it has been down to what you said Mac, I have been doing so well since starting abx just over two years ago that I've been spending my spare time with other stuff rather than sitting on the pc every night for hours.
I've been having a break since November but plan to start back after New Year, I was actually about to send the wonderful Dr Wheldon an e mail to let him know I hadn't gave up but was just taking time out, but they have worked for me.
If I get something for my laziness then I'll post more in the new year.
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Tue Dec 30, 2008 2:12 pm Post subject:
Al - I was wondering what happened with you!!! Great news! Thanks for posting this. And, yes, we want the gory details, so come back soon. _________________ 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
Hello (waving)...
A friend asked me for info about my treatment choices and I followed the links I sent to her and ended up reading here again.
I'm one of the ones that followed the Wheldon CAP and still take LDN, and I disappeared from this Forum.
I stopped CAP awhile ago... 18 months or more. This October will be my 5yr anniversary of being diagnosed and I have no symptoms... no deficiencies. Other than a healthy fear of MS returning to my life, I have nothing to remind myself of when I was sick.
So... all is well here and if I ever have symptoms again, I will be taking the same treatment.
Till next time! _________________ Dx MS 10-05, multiple symptoms. MRI 20 brain lesions (3 enhancing), 1 spinal lesion, positive spinal, MMA>550.
Started: LDN 12-05, Wheldon CAP: Doxy 2-06, Azith 3-06, Flagyl 5-06.
Now: All is well, no symptoms! 4/2010
Joined: Sep 25, 2005 Posts: 405 Location: Chicago area
Posted: Wed Apr 21, 2010 9:50 pm Post subject:
You bring tears to my eyes! How wonderful!!! How NORMAL! _________________ 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
Joined: Jun 18, 2004 Posts: 1723 Location: Bedfordshire UK
Posted: Fri May 21, 2010 6:47 am Post subject:
Mamahawk, waving back!! How wonderful to hear from you..............Sarah _________________ An Itinerary in Light and Shadow Completed Stratton/Wheldon antibiotic regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. EDSS was 7, now I could pass for perfect most days.
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), and has been on a bunch of different combinations. Many of which are not the anti-inflammatory kind which could make some people think his good health and improvement might be attributed to those-i.e. minocycline/doxycycline etc.
