Extended minocycline trial results look promising
The Calgary team that is evaluating oral minocycline as a treatment for RRMS has released the results from the 24-month point of its clinical trial. One subject dropped out at the 6-month point because of living in another city and another discontinued treatment but not follow-up at 18 months. No relapses were reported among the entire group from month 6 to 24 (the average yearly relapse rate before the study was 1.3). Only one subject, who was on a reduced dose, had any Gd+ lesions after the three month point (pretrial MRIs of these subjects had an average of 1.38 Gd+ lesions per scan). Serum biomarker analyses showed increased levels of the potentially anti-inflammatory molecule IL-12p40 and decreased activity of MMP-9, a molecule that may help lymphocytes gain access to the brain (among other functions).
The authors note that the effect on relapses may have been due to the placebo effect or regression to the mean, although the MRI and serum biomarker data seem to indicate that the treatment is doing something. A larger, controlled study would seem to be the next step for this drug if the funding can be arranged.
I see that the minocycline
I see that the minocycline researchers are also presenting at ACTRIMS in early June:
Long-term outcome of minocycline in relapsing-remitting multiple sclerosis
Yunyan Zhang, PhD, MD
University of Calgary
Calgary, Alberta, Canada
In addition to its anti-inflammatory benefits, minocycline may also have neuro-protective benfits.
Given that it is relatively safe and relatively cheap, it's a pity that the various MS Societies cannot put the cash up to fund a trial which comes up with a definitive answer. And the trial should examine minocycline on its own (with a placebo arm), rather than a combo with Copaxone. I imagine that the CRAB manufacturers would be very concerned to learn that a cheap anti-biotic could equal the efficacy of their expensive drugs and offer ease of use (oral) and possible neuro-protective benefits.
Goverments, not MS-societies
MS-societies are probably not willing to fund a clinical trial that might question the use of ABCR-drugs. They are just too tightly connected with ABCR-manufacturers.
On the other hand, those European governments that pay the healthcare of their citizens, should be more interested in finding cheaper and more effective treatments for chronic illnesses. After all, a valid clinical trial (100-150 patients, one year) for comparing minocycline against one of the interferons would probably cost only 2-3 million euros. And if the trial would prove the benefits of minocycline over interferons, it might save a lot of money. For example here in Finland the total annual cost of MS-drugs is almost 30 million euros, over 14.000 euros per patient. Minocycline would cost much less.
minocycline
I am in complete agreement about the pharma's !! They are now in a posture to protect their cash flow. All of a sudden larger doses, and combinations make sense!! And this approach is worthy of expensive trails...anything to keep the cash flowing.
Of course the result will be an eloquent paper from some "expert" stating that this approach looks hopeful and "merits" further research. Which equals more money, bout no mention of a CURE.
FIND THE CAUSE/FIND THE CURE.
SPIFF-- PPMS
Minocycline
Its sad, that the current drug companies, are tagging on to new therapies that show promise. I guess they need to squeeze out every buck they can. The word must be getting around that these don't work very well! This was told to me by my neuro.
Thank God for reply number three
Thank God there is at least one other MS'er that sees through the pharma/research smoke screen!
Where is everybody else?
It's no wonder we are where we are.
FIND THE CAUSE FIND THE CURE.
SPIFF PPMS
Agree with FINN
This is the same set of problems faced getting LDN trialled, no way for producers to make money doing it, so you have to focus on payers who may save money instead.
Two plus years of Tetracycline and EDTA arrested my MS
Antibiotic treatments for MS are not new. I treated my MS with tetracycline and EDTA for over two years now and remain "MS free". Avonex and Beta Seron side effects were the worst aspects of having MS for me. I stopped taking the AB drugs completely two years ago. I remain working and well. My interest has grown to include the effects of vitamin K2 or the effects of a lack of K2. Anyone out there with vitamin K2 thoughts? I too agree with #3 above. Those of us with MS understand our MS the best and are results motivated.
tetracycline and EDTA
Scott, to hear of an MSer clearing soft-tissue calcification[ nano-bacteria?]with tetracycline and EDTA is exciting news-at least,for me. Will you please elaborate by saying what were the dosages, the treatment intervals and for how long. Soft-tissue calcification is apparently caused by mineral imbalance [ hence the need to boost magnesium intake], lack of calcification inhibitors such as matrix GLA protein [hence the need to boost this with vitamin K] , eating too many acid-forming foods and stress. We must be careful not to get too excited but, frankly, it's all begining to make sense!
Soft-tissue calcification treatment detail
The treatment involves taking a suppository of 1200 mg EDTA (disodium calcium), 500 mg tetracycline HCI, and suppliments to support the treatment and tissue cell and blood vessal health. The suppliments contain vitamins C, Niacin, B-6, Folate and coenzyme Q-10. Also EDTA, L-lysine, L-arginine, L-ornithine, bromilain, trypin, grape seed extract, hawthorn berry and papain are in this suppliment. The cost is about $10 a day for the initial treatment and a few dollars a day for maintenance. I take these all before bed. Since no one with MS had tried this before, the duration of treatment was a guess. Other diseases required at least 4 months of treatment. I had a MRI of my brain at the beginning to establish a baseline. I chose to do it for at least a year followed by another MRI. Could I tolerate this treatment? Yes, the side effects were nominal and as expected when treating other diseases. After a couple of months I decided to drop the Beta Seron. I also tried Bactrim for a short period because it is more efficient at crossing the blood-brain barrier. I am not sure if it was better than the tetracycline. After that first year I continued the treatment while skipping days to see if the positive effect held. If left untreated for as much as a week there seemed to be some adverse slipping. Now I take an oral version of the treatment at a lower dosage. The tetracycline is still 500 mg per day at bedtime. Timing is important. Eat an early dinner, wait two hours then take tetracycline, wait an hour or so then take the rest and go to sleep. Probiotics and other vitamins can be taken the next morning or later but not too close to supper. For more detail refer to comments I made in another thread http://www.acceleratedcure.org:8080/node/2585 comment 13... "Cortical atrophy evident even at early stages of MS". I got the initial meds from http://www.westchasepharmacy.com/caldetox.html and the maintainence meds from http://www.calgenex.com/. They are an offshoot company of Nanobaclabs that is leading the research of Calcifying nano-particles involved with other diseases and were very helpful as I explored this therapy for my MS. I do not have a financial connection with these companies. I have continued to follow this therapy for about 27 months and continue to feel MS free. As research matures I expect that better ways to do this will emerge.
soft-tissue calcification
Scott,
Thank you for your detailed answers. Am afraid I somehow missed your very helpful comment of March 29 which clearly substantiates my point that this theory/treatment warrants intensive research. My personal view is that soft-tissue calcification is only one part of the MS puzzle but could be the initiating part that slowly develops until a virus[perhaps together with an old, dormant virus] triggers the clinical symptoms - but only urgently needed research can tell. You say that a break in the continuous treatment led to adverse slipping which implies this regimen is treating the disease, not curing it. So maybe other aspects need to be dealt with simultaneously e.g.knocking out viruses with LDN or somesuch? By the way, can you test your calcification levels before and after treatment as you did with MRI's. You are doing great work and hopefully we shall hear much more from you and your fellow MSers as the treatment is honed and checked over time.
Soft-tissue calcification
At the beginning of the treatment I tested high positive (166.2) for Nano-bacteria antigen. After a year of treatment the antigen level reduced to 47.9, significantly down but still active. The adverse slippage was only noticeable. I had attributed it to the antigene remaining at an active level and needing futher supression.
Ah! an important point that
Ah! an important point that antibiotics for MS are not new. There are many, many more of us who are treating MS with antibiotics and getting better. I guess the only beef I have with the Mino trial (besides tying it to a CRAB!) is the notion that mino works because it is anti-inflammatory and neuro-protective. That is bunk, it's because it is antimicrobial.
C'mon
Who cares how it works as long as it works? Besides, minocycline really is neuroprotective. It can prevent neuronal death by blocking excitotoxicity caused by glutamate.
minocycline or tetracycline
All the research evidence shows that minocycline is both anti-inflammatory and neuro-protective so where is the great debunker coming from?
More to the point,minocycline appears to have several advantages over it's cousin tetracycline. So, Scott, do you prefer to use the latter to reduce soft-tissue calcification for a particular reason? Apparently, minocycline and magnesium supplements should not be mixed - perhaps that is a disadvantage yet a 2 hour interval between their ingestion is OK, is'nt it?
Art, if I am getting too detailed and one-tracked, will you please give Scott Farmer my email address so that we can communicate directly without upsetting the debunkers. Thanks!
Anonymous - you need to log in or leave a contact
Since you are leaving your comments as Anonymous, I have no way of knowing who you are. When you leave a comment you are given the opportunity to leave contact info, or you can log in (if you are registered), or you can contact Scott by clicking on the link that is his name.
***
Art Mellor, Accelerated Cure Project for MS, art-msnews -at- acceleratedcure.com
Minocycline or tetracycline?
My target has been Nanobacterium sanguineum (NB). Minocycline and doxycycline were not shown to be effective against NB. Tetracycline, Bactrim and another (which I'll have to go back to my notes to report if someone is interested) were shown to be effective against NB. Bactrim is more efficient in crossing the blood/brain barrier but was less desirable to take for the long term. Tetracycline is the most effective against NB of the three. Taking Minocycline and Tetracyline in complement might make some sense but it makes it harder to study which is more effective in MS.
Antibiotics protocol
I have been taking the anti-biotics, doxicycline (200mg daily), roxithromycin (300mg daily) and metronidazole (1200mg daily for 5 days every 3 weeks) for 2 years. I have now started my 3rd year of treatment this time taking metronidazole continuously. Prior to antibiotic treatment I was developing at least one new neurological deficit annually and in 2004 I developed 5 new deficits. Since starting the treatment in early 2005 I have only developed one new deficit one month into treatment. Some of the other deficits have very slowly and gradually improved.
MS
I am new here can someone tell me more about antibiotics and MS. I am so frustrated by the medical community lacking common sense. First of all you have to know there is no one cure for MS because it is not a disease it is a symptom. No 2 people are alike in these symptoms so no 1 drug therapy is going to work. My symptoms are caused by something different than yours. Wake up. Stop trying to treat everyone the same. Find the cause and you will find the cure. I have just found out about LDN. It sounds very promising. I had a very severe sinus infection when I came down with the symptoms of this so i completely agree about infection. I dont know anything about the antibiotics. Could you please help?
Antibiotics and "MS"
Here is an abstract that explains:
'excitotoxicity' = excessive activation of glutamate receptors that can result in cell death in neurodegenerative disorders.
Dr Agrawal wrote a hypothesis talking about glutamate receptors, 'Low dose naltrexone therapy in multiple sclerosis' then a paper 'Possible importance of antibiotics and naltrexone in neurodegenerative disease'.
If you look at the full description of the UCSF LDN for MS trial, they state "Lesions in MS may be the result of oligodendroglial apoptosis and microglial activation rather than neuroinflammatory processes." They seem to be citing Agrawal's theory, as well as some of Liu's 'Role of nitric oxide in inflammation-mediated neurodegeneration'.
Links to these articles available here.
SammyJo
http://LDNers.org
Minocycline and M.S.
Never say Never!!
I have been taking Minocycline in addition to all the other meds I took for a decade of so, ever since reading the original abstract regarding its efficacy in M.S. It is available of the PBS in Australia, so as a disability pensioner I get it at highly subsidized rates (c.$5 per 30 day script). It never causes me any adverse effects, unlike Betaferon 1b where the side effects were almost unbearable for the first 6 months.