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Joined: Jun 18, 2004 Posts: 1459 Location: Bedfordshire UK
Posted: Mon May 21, 2007 1:50 am Post subject:
Yes, but in the UK we have the National Health Service. I don't have separate insurance because I used to think I was so healthy compared to my friends. David doesn't because he is an NHS doctor. I doubt if insurance would cover a non urgent MRI in any case. I did pay for my initial consultation with this man, I'm not going to give him any more of my money: there are better things to do with it!
I think we seem to be highjacking the purpose of this thread. _________________ 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.
Posted: Thu Nov 15, 2007 7:37 am Post subject: Minocycline Pilot Trial Article is Accessible
Ken
The Accelerated Cure Project and Lyon informed us that articles in the journalMultiple Sclerosis are accessible through November. You’ll need to register on the home page.
An article on the pilot trial of minocycline is in the May issue.
Posted: Wed Jan 30, 2008 1:22 pm Post subject: minocycline
When I first met with a doctor at Johns Hopkins in July, 2006 for the possible treatment of primary progressive ms, she told me of the various drugs being tried that she knew of and I opted for minocycline. I can't remember the dosage. At first there were no side effects. Then after about 6 weeks I very suddenly came down with acute bronchitis with a very high fever. During the ensuing 5 months of recovery I googled ms and bronchitis and came upon the site http://www.CPn Help/. The site predicts that, if you have ms, you will become ill upon taking antibiotics and posits that the bacteria chlamydia pneumonia, which also causes bronchitis, is the culprit. I immediately had my blood tested for this bacterium and found that I had an active infection.
In December I became allergic to minocycline. My neuro took me off the medication saying that it was "voodoo medicine" anyway. I protested, to her amazement, that despite the bronchitis I was doing somewhat better on it. I told her about the Wheldon Protocol (CPn Help) and she said she would look into it. It took 3 months but, after conferring with her colleagues, she started me on the Protocol which uses doxycycline instead of minocycline. Despite having a form of ms that is known to never improve, I have had documented improvement on the Wheldon Protocol and I understand that neuros. are starting to see that minocycline, aside from being neuroprotective, actually heals lesions. _________________ PPMS, using Stratton/Wheldon Protocol
Joined: Sep 11, 2007 Posts: 507 Location: southern California
Posted: Thu Apr 24, 2008 5:25 pm Post subject:
Jeff began minocycline this week, prescribed by his dermatologist with permission from his neuro. She had read the Copaxone/minocycline studies, and agreed to the requested prescription. Only 100 mg a day. So far so good, no stomach issues. Jeff is also taking a probiotic to balance things out.
http://www.encyclopedia.com/doc/1G1-162972820.html
AC _________________ Husband diagnosed RRMS March 2007
20 lesions brain/spine
Copaxone, Swank, supplements, laughter
Joined: Sep 25, 2005 Posts: 343 Location: Chicago area
Posted: Fri Apr 25, 2008 2:09 am Post subject:
Well, you can no longer say you're sitting on the sidelines! Good for him! Let us know how he progresses, please? _________________ 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: 1459 Location: Bedfordshire UK
Posted: Sat Apr 26, 2008 3:27 pm Post subject:
Wow, good for both of you! I see you are being wise with the probiotics as well, but so remember that they should be taken at least two hours apart from the minocycline.
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.
Joined: Sep 11, 2007 Posts: 507 Location: southern California
Posted: Sat May 03, 2008 2:19 pm Post subject:
Thanks for the welcome Sarah, Mac and Lori- we got up off the bench.
Three weeks, all's well. We're going to up the dosage to 200mg. Jeff's neuro is very open to antibiotics (!) and his dermatologist helped us out with the scrip, so it's covered by insurance.
Jeff has noticed less fatigue, but his legs have been a bit sore. No stomach issues.
onward,
AC _________________ Husband diagnosed RRMS March 2007
20 lesions brain/spine
Copaxone, Swank, supplements, laughter
Joined: May 16, 2008 Posts: 5 Location: Langley BC Canada
Posted: Fri May 16, 2008 2:25 pm Post subject: Long term minocycline use - info from a Lyme disease victim.
Hi all. I have used Minocycline to treat chronic/post lyme Disease for about 18 months now. I have used a variety of antibiotics over the last 3 years including Doxy and IV cephtriaxone, and Minocycline has been the most effective and easily tolerated. I thought I would share some tips for long term minocycline use, as I suspect that Mino will soon become the standard treatment for MS.
Take acidophilus daily, and eat lots of plain yogurt.
Avoid starches (with a passion!) and eat a "Mediterranean" diet, with lots of green salads. This will control any tendency towards yeast overgrowth, and is a heart smart, anti inflammatory diet.
Contrary to popular opinion milk has very little effect on Minocycline, and taking Mino with food or a glass of milk will help settle your stomach.
Avoid laying down for a hour or so after taking Mino, this will help control a tendency towards dizziness, for some people.
Mino does not cause marked sun sensitivity and rash, such as found in Doxy, but it will cause you to develop a very dark tan, if you get lots of sun so you should still be cautious. If you wish to cycle Mino and Doxy, take the doxy in the winter, when sun exposure will be less of a problem.
I had/have many MS like symptoms and the Minocycline takes care of most of them, including joint/nerve pain, fatigue and brain fog.
My rheumatologist has had some patients on Mino for over 9 years, and most people can tolerate it well. It is very safe.
Thanks for the helpful info! You made the statement "I suspect that Mino will soon become the standard treatment for MS" and I am curious as to
why you feel that way. Simply interested and am in no way trying to
be contrarian.
Joined: May 16, 2008 Posts: 5 Location: Langley BC Canada
Posted: Sat May 17, 2008 7:08 pm Post subject:
schnittke wrote:
Thanks for the helpful info! You made the statement "I suspect that Mino will soon become the standard treatment for MS" and I am curious as to
why you feel that way. Simply interested and am in no way trying to
be contrarian.
There have been 4 long term trials (6 months to two years) of Minocycline and MS, one in Germany, one in the USA and two in Canada. of the 40 people involved, more than 30 had complete resolution of MRI visible lesions and most also reported dramatic improvements in all aspects of the disease. In one year follow ups, virtually no new lesions developed. No other drug that I know of has been able to produce these kinds of results, and Minocycline is safe and quite inexpensive. Those who did not show improvement, almost universally dropped out of the studies, primarily due to GI upset.
Over 6.5 million people have been on Minocycline for an average of 9 months in the UK alone, and millions more in North America and Europe, as it is the standard treatment for adult acne, so it has been proven safe, especially as many of these people also had MS, and AFAIK there are no case reports of MS getting worse due to Minocycline. A large scale, long term trial is underway now (AFAIK) in Canada, but the results will not be known for another two years. However, the results of the long term, small scale studies, have been so compelling, that I find it hard to believe that more MS sufferers are not using Minocycline.
There is abundant evidence that a variety of bacterial/spirochetal diseases either cause MS directly, or trigger an autoimmune response that initiates the disease. Lyme Disease and MS have an almost perfect overlap when cases are plotted on maps, for example, and in Canada the medical community is claiming that Lyme Disease (LD) is virtually non existent, when other geographical areas at the same latitude show a rate of LD 10 to 300 times higher. Yet Canada has one of the highest MS rates in the world.
Minocycline is effective against most of the suspected bacterial/spirochetal diseases and has been proven to protect the CNS even when no pathogen is present, so it is a win-win drug: It will kill the disease, but also protect the CNS when no infection is present. Minocycline can also inhibit some types of viral reproduction as well, and has been proven effective against West Nile, for example.
There is a debate in the medical community over the efficacy of long term antibiotic treatment for LD, but the amazing thing is that when MS is treated like drug resistant type of LD, with long term antibiotics, most MS sufferers show a dramatic improvement. If you cannot tolerate minocycline, then Doxycyline and (maybe) tetracycline may also be effective.
But wait...there's more!
Minocycline has been shown to be effective against RA, and also against depression! It also seems to fight the brain fog that is a feature of late stage LD and MS.
The evidence for Minocycline is compelling IMHO.
I should add that if you do happen to have infection that is triggering your MS, that you may feel worse before you get better. This may be due to the Jarisch-Herxheimer reaction:
Joined: Sep 11, 2007 Posts: 507 Location: southern California
Posted: Sun May 18, 2008 9:14 am Post subject:
Wanted to get specific studies info on the boards regarding minocycline-
There are not many large scale study results in humans at this point. The negative results of minocycline in ALS patients has put many off, since mino had shown great promise in the ALS mouse model studies. Those trying mino should do so with a doctor's assistance. There's still too much we do not understand about how it works in the CNS, but things do look promising-
I too have been on antibiotics for 17 months, and seeing improvement like others have reported.
I do however take a good probiotic, and never had any problems with candida.
Like duncan, I see the future of MS patients using an antibiotic as a source of well being.
More and more patients sitting in the doc's waiting room who like me-diagnosed with MS- are enjoying better health due to antibiotics. And, many like me remained on their DMD's for awhile...then decided to pass and stick with just antibiotics.
Minocycline crosses the BBB and can be very effective. I have been on Tetracycline as well which for me produced very good results. I've been on many different abx over these months.
As for long term affects of antibiotics:
Research done by doctors who use long term antibiotics was withheld from the guidelines of the IDSA.. until recently. There should be a revision on those guidelines, and once this happens, it will open up the conversation regarding antibiotics with doctors. Hopefully, the fear will begin to be diminished.
I also agree regarding RA, depression, brain fog, but will include chronic fatigue, fibromyalgia. Again, I'm amazed at the people I meet while in my doc's office.
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Good for him! Let us know how he progresses, please?