Minocycline use for RRMS

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Minocycline use for RRMS

Postby viper498 » Fri Mar 12, 2010 11:20 am

So its been a long time since I last posted. I wanted to update those who are interested on my experience with Minocycline and RRMS. I have, since starting minocycline, not had a relapse, and I currently have no symptoms or residual issues. I was diagnosed with MS in 2005. So I am in to year 5 of dealing with this horrible disease, and so far I am ok. I have had two relapses since my presenting flare up. Once I started minocycline I've not had a relapse. Unsure of whether I can attribute that to the minocycline or not.

What I believe I can attribute to the Minocycline use is a problem though. I started to notice strange "freckles" on my lower legs a while back, but definitely after starting minocycline use. I went to a dermatologist and he diagnosed me with Schambergs Disease. After doing some research here in the last few days, here is what I have discovered:

See links:

<shortened url>

So, now I am concerned. Since I am not sure whether it has been luck, natural progression of MS, or the minocycline that has prevented me from having a relapse, I am in a conundrum of sorts. I am not sure if I should discontinue use of Mino, or what?????

Has anyone else had a similar experience with Minocycline? Guidance or advice would be appreciated.

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Postby Lyon » Fri Mar 12, 2010 12:39 pm

Last edited by Lyon on Mon Nov 21, 2011 6:05 pm, edited 1 time in total.
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Postby DavidR » Fri Mar 12, 2010 1:12 pm

I am in a similar conundrum because I believe that the Minocycline has caused me to develop tinnitus. I have been taking Monocycline for nearly three years and I have been otherwise doing well. I imagine that if I were on one of the standard drugs, the neurologist would assure me that the drug is working and I should continue. I plan on discussing the situation at my next appointment. In the meantime, I am going to continue with the drug and wait for the results of the larger study. It looks like I will be at the six year mark before any results come out from that study. If the study disproves the usefulness of the drug, I am hoping there won't be too much harm done.
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Postby sojourner » Fri Mar 12, 2010 1:36 pm

Do you supplement with Vitamin C?

There is evidence (lots of research if you do a search )that this can help with the hyperpigmentation issues with Mino. Whenever my husband uses mino his dr. always tells him to also take C---in faily large amounts.

Otherwise, I am glad to hear you are doing well. Just out of curiosity, have you had any MRIs lately? Any new lesions, etc.?
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Postby viper498 » Fri Mar 12, 2010 4:22 pm


Thanks for the response. I am also anxiously awaiting the data from the trial. I may also have tinnitus... I get ringing in my ears from time to time as well.


I had no idea about vitamin C and minocycline. Do you have any idea what dosage should be taken?

Also, I know I should have, but I haven't had any MRI's. I call it willful ignorance. I am afraid of what it might show, and then my life will be consumed with constant fear again. I have gotten over it, for the most part, because I have no symptoms, and I take my pills (mino) and look forward to the next day. With out MRI's though, I know its hard to say whether its doing me any good or not.

I can say that with my type of MS, my MRI's were lit up like a light bulb when I did have a relapse. However when I wasn't in the middle of a relapse, everything thing was quiet, with minor residual signs of a previous relapse.

Thanks again for your responses! I know I don't comment on here very often, but I lurk on a weekly basis, sometimes several times a week. This site keeps me grounded and has provided me with support I could never get anywhere else. I love this group of people.
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Postby viper498 » Fri Mar 12, 2010 4:25 pm


Of course we wish it were under better circumstances, but thanks for responding anyway! My circumstances could be much worse, so I am thankful for the quality time I've had up until now.

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Postby sojourner » Fri Mar 12, 2010 6:23 pm

Think my husband always took about 2000 mgs, but one study says 500mgs 2 X per day.
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mino for HIV-interesting info

Postby Selmahope » Sun Mar 21, 2010 9:32 am

Acne Drug Prevents HIV Breakout'

BALTIMORE, March 18 (AScribe Newswire) -- Johns Hopkins scientists
have found that a safe and inexpensive antibiotic in use since the 1970s for
treating acne effectively targets infected immune cells in which HIV, the
virus that causes AIDS, lies dormant and prevents them from reactivating and

The drug, minocycline, likely will improve on the current treatment
regimens of HIV-infected patients if used in combination with a standard
drug cocktail known as HAART (Highly Active Antiretroviral Therapy),
according to research published now online and appearing in print April 15
in The Journal of Infectious Diseases. "The powerful advantage to using
minocycline is that the virus appears less able to develop drug resistance
because minocycline targets cellular pathways not viral proteins," says
Janice Clements, Ph.D., Mary Wallace Stanton Professor of Faculty Affairs,
vice dean for faculty, and professor of molecular and comparative
pathobiology at the Johns Hopkins University School of Medicine.

"The big challenge clinicians deal with now in this country when
treating HIV patients is keeping the virus locked in a dormant state,"
Clements adds. "While HAART is really effective in keeping down active
replication, minocycline is another arm of defense against the virus."

Unlike the drugs used in HAART which target the virus, minocycline
homes in on, and adjusts T cells, major immune system agents and targets of
HIV infection. According to Clements, minocycline reduces the ability of T
cells to activate and proliferate, both steps crucial to HIV production and
progression toward full blown AIDS.

If taken daily for life, HAART usually can protect people from
becoming ill, but it's not a cure. The HIV virus is kept at a low level but
isn't ever entirely purged; it stays quietly hidden in some immune cells. If
a person stops HAART or misses a dose, the virus can reactivate out of those
immune cells and begin to spread.

The idea for using minocycline as an adjunct to HAART resulted when
the Hopkins team learned of research by others on rheumatoid arthritis
patients showing the anti-inflammatory effects of minocycline on T cells.
The Hopkins group connected the dots between that study with previous
research of their own showing that minocycline treatment had multiple
beneficial effects in monkeys infected with SIV, the primate version of HIV.
In monkeys treated with minocycline, the virus load in the cerebrospinal
fluid, the viral RNA in the brain and the severity of central nervous system
disease were significantly decreased. The drug was also shown to affect T
cell activation and proliferation.

"Since minocycline reduced T cell activation, you might think it
would have impaired the immune systems in the macaques, which are very
similar to humans, but we didn't see any deleterious effect," says Gregory
Szeto, a graduate student in the Department of Cellular and Molecular
Medicine working in the Retrovirus Laboratory at Hopkins. "This drug strikes
a good balance and is ideal for HIV because it targets very specific aspects
of immune activation."

The success with the animal model prompted the team to study in test
tubes whether minocycline treatment affected latency in human T cells
infected with HIV. Using cells from HIV-infected humans on HAART, the team
isolated the "resting" immune cells and treated half of them with
minocycline. Then they counted how many virus particles were reactivated,
finding completely undetectable levels in the treated cells versus
detectable levels in the untreated cells.

"Minocycline reduces the capability of the virus to emerge from
resting infected T cells," Szeto explains. "It prevents the virus from
escaping in the one in a million cells in which it lays dormant in a person
on HAART, and since it prevents virus activation it should maintain the
level of viral latency or even lower it. That's the goal: Sustaining a
latent non-infectious state."

The team used molecular markers to discover that minocycline very
selectively interrupts certain specific signaling pathways critical for T
cell activation. However, the antibiotic doesn't completely obliterate T
cells or diminish their ability to respond to other infections or diseases,
which is crucial for individuals with HIV.

"HIV requires T cell activation for efficient replication and
reactivation of latent virus," Clement says, "so our new understanding about
minocyline's effects on a T cell could help us to find even more drugs that
target its signaling pathways."

The research was supported by grants from the National Institutes of
Health. Authors of the paper, in addition to Clements and Szeto, are Angela
K. Brice, Sheila A. Barber and Robert F. Siliciano, all of Johns Hopkins.
Also, Hung-Chih Yang of National Taiwan University Hospital.

On the Web:
http://www.hopkinsm edicine.org/ mcp/faculty_ webpages/ clements. html
http://www.hopkinsm edicine.org/ mcp/Retrovirus/
http://www.journals .uchicago. edu/toc/jid/ current

Related Video: http://www.youtube. com/watch? v=C_ImNAEpOHY Janice E.
Clements, Ph.D., on her team's discovery that a safe, inexpensive antibiotic
will improve on the current treatment regimens of HIV-infected patients.

"Fascinating idea here. Might explain why minocycline helps cfs and Lyme
patients apart from, or along with, killing bacteria."

Source: Paula Carnes
Posted at: [cfs_research] Minocycline prevents HIV breakout
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Postby Chris55 » Mon Mar 22, 2010 8:21 am

I realize no one cares...but my daughter's supplements are used like antibiotics...no negative side effects and they have proven (so far) to keep her disease under control (approx. 4 years with no MS meds). She just had her first child and she is sucking up her supplements in an effort to avoid the typical new baby relapse!

I would look into supplements that might help negative effects you may be having from the antibiotic. Won't hurt! Good luck and glad to hear it is working for you.
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Postby LR1234 » Mon Mar 22, 2010 8:50 am

Chris, what were the supps again? I know you wrote them to me a while ago but they have disappeared from my inbox!
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Postby viper498 » Mon Mar 22, 2010 12:49 pm

Yes, what was the supplement list? Is she also taking Minocycline?
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