Calling all Minocycline Users

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

Postby SarahLonglands » Mon May 21, 2007 12:50 am

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 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 » Wed Nov 14, 2007 8:16 pm

Minocycline

I can find one single page of medical journal on this from 2004.

Is there more? I want stuff to show our Neuroloist when we go in for the "big" visit.
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Postby Loriyas » Thu Nov 15, 2007 6:24 am

Ken
Search minocycline and ms. I found a number of articles. This is one:


http://www.medicalnewstoday.com/articles/87541.php

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Minocycline Pilot Trial Article is Accessible

Postby Shayk » Thu Nov 15, 2007 6:37 am

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.

The clinical response to minocycline in multiple sclerosis is accompanied by beneficial immune changes: a pilot study

Sharon
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minocycline

Postby Oedipuss » Wed Jan 30, 2008 12:22 pm

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.org/. 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.org) 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
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Postby cheerleader » Thu Apr 24, 2008 4:25 pm

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

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MacKintosh » Fri Apr 25, 2008 1:09 am

Well, you can no longer say you're sitting on the sidelines! :wink: 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
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Postby SarahLonglands » Sat Apr 26, 2008 2:27 pm

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 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 Loriyas » Sat Apr 26, 2008 6:09 pm

I started with minocycline. I did okay with it also. Hope your husband does also.
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Postby cheerleader » Sat May 03, 2008 1:19 pm

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,
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Long term minocycline use - info from a Lyme disease victim.

Postby duncan1 » Fri May 16, 2008 1:25 pm

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.
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Postby schnittke » Sat May 17, 2008 2:19 pm

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.
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Postby duncan1 » Sat May 17, 2008 6:08 pm

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:

http://en.wikipedia.org/wiki/Jarisch-Herxheimer_reaction
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Postby cheerleader » Sun May 18, 2008 8:14 am

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-

currently enrolling clinical trial- Minocycline with Rebif
http://clinicaltrials.gov/ct2/show/NCT00381459

New study enrolling in Canada, minocycline for RRMS-thru 2010
http://www.medicalnewstoday.com/articles/87541.php

Small study at Un. of Calgary results which prompted the larger study-
http://www.ncbi.nlm.nih.gov/pubmed/17463074

Completed study of mino + Copaxone in RRMS
http://www.bio-medicine.org/medicine-te ... Scl-782-3/

Here are the German study results (AEA in mice)
http://jac.oxfordjournals.org/cgi/content/full/59/1/74

Canadian study (AEA in mice)
http://brain.oxfordjournals.org/cgi/con ... 125/6/1297
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby tory2457 » Sun May 18, 2008 10:43 am

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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