Know Multiple Sclerosis

Intriguing ... I'm off meds right now and doing well. However, if things get sketchy I suppose I should consider this. What is the delivery mechanism?

Hi, It's Alison...The delivery mechanism is oral, by mouth twice a day, the same dosage you would take to treat acne....my face looks awesome :)..this is one of the reasons I decided to go on it, is I did not want to give myself injections daily...

Hi Alison - can you tell me, please, what is the exact dosage of minocycline that you take per day? Thanks

Hi Jean,

I take 100 mg twice a day, one in the morning and one in the evening. I feel sooo awesome, I have no issues...I go for another scan in April with the results being read on the 24th, but I can tell you right now there will be no progression..It is soo perplexing to me why they are not moving forward with major studies on this in the US..this is such a generic antibiotic..good luck to you :)

Hi Alison,

Thanks for your answer. I have been taking minocycline 100 mg once a day because I wasn't sure what the ms dose should be. It has been good at slowing progression. I went on it because I am 56 and was just diagnosed 2 years ago. I had been taking minocycline for acne for about 10 years. Then I stopped taking it and was fairly quickly diagnosed with ms at my late age. I don't think much of the platform drugs-a 30% reduction does not seem to me to be worth the injection hassle. I happened to run across some info on ms and minocycline. The light bulb went on when I realized I had been on it for 10 years already and then went off of it. Progression has been so slow.I will now go to the doctor and get it doubled. Thanks P.S. How old are you and how long have you been on the minocycline?

A few comments on minocycline. Since it is an antibiotic, make sure you take a probiotic to counteract the effects of being on an antibiotic long term. Long term antibiotics kill all the friendly bacteria in your digestive system. Taking a good probiotic supplement will repopulate them so you don't end up with candida. Minocycline is a tetracycline drug. Long term use darkens your teeth permanently. Also never take a tetracycline past the due date - can damage your liver. They are presently working on a drug that has the antiinflammatory properties and not the antibiotic properties of minocycline as ms people only need the antiinflammatory part of the drug. I will eagerly switch to that when it comes out. I hope this has been helpful.

Hi Jean,

Wow!! you were on minocycline for 10 years...what were your symptoms of MS? has there been any shown progression on the MRI's with being on the minocycline? I also found it surprising that you were diagnosed in your late 50's....usually it is diagnosed between 20-40 yrs. old. did you have symptoms earlier and just not know it was MS, or do you think the minocycline held it at bay for all those years? Thanks for posting on the pro-biotic..i am taking a probiotic also...i felt the same exact way about the injections,,,if it was a 50% chance of reduction maybe i'd consider it...I am 33 years old, and have been on the minocycline since october 2006...my next scan is on april 23rd, with the results being read to me on the 24th...so I will post as soon as i find out...i have 2 little kiddos at home....and am super busy with them...the MS does not affect me at all...i am never tired, super energetic, can walk fine.......so I guess i just do not understand this diagnosis, but i guess it is what it is, and hopefully i will always be fine, it just kinda stinks, cause i just feel like i have a dark cloud hanging over my head....good luck to you, i also cant wait for this supposed minocycline drug they are working on, without the antibiotic properties,,,have you heard of what phase trials they are with it? good luck to you!!!!!

Hi Alison

Thanks for responding. I was originally on minocycline for mild acne that I got after the birth of my second child. So, I was on it from maybe 35 to 45-50 years of age. Then I went off of it on my own just because I was tired of taking it. Did I have ms earlier in my life - maybe - I had restless leg syndrome as early as 17 and then maybe a couple other times, but then never had it again until later in life - I also had tinnitus briefly in my early 30's but resolved it easily by cutting out my one cup of coffee daily - really ms? - maybe. Then I went on the minocycline for 10 or 12 years - had no ms symptoms then - took 100 mg per day. A couple of years later at 49 I herniated a disc that caused partial drop foot in my left foot (apparently not caused by ms since MRI showed no lesion in the lumbar area at all). At the same time I had tingling in my left hand/arm which was pretty much disregarded by the doctor at that time (which I now know from an mri is ms in the cervical spine). A couple years later I started seeing double out the right side of my right eye. That problem led to an eye/brain MRI and also a cervical one which I asked for. There were a couple of dots on my brain suspect for ms but they thought it was odd in a woman my age. The cervical MRI confirmed the lesion affecting my left arm. Went to a neurologist and had a thoracic and lumbar MRI which showed no ms, but the lumbar puncture made the diagnosis. It has been a long road. I was scheduled to go on the Tysabri infusion but it was taken off the market the day before. So, the neurologist said I should try a minocycline trial, but if I got the placebo, I would just keep getting worse. So, I got my regular doctor to prescribe minocycline until they come up with something better. That wass ago. I just need to find out the dosage that would be best for ms, so thank you. I have had no follow-up MRI'S - don't like them, but I supppose it is time again. I do a lot of research on the possible causes of ms - I have been tested for food allergies, got a colonoscopy to rule out leaky gut syndrome, checked out the vitamin D theory, made a note that I did have the kissing disease virus in high school, and am slowly replacing my mercury fillings in my mouth. So, in the end, I think that I probably had slow progression ms for years when I was young, but that the minocycline kept it at bay for years, and that the worst thing I ever did was go off of it. I don't know any more about where they are in making the new drug - don't think they have figured it out yet - no trials that I know of - it is supposedly being done by PARATEK pharmaceuticals. Sounds like you are doing well. What makes them think you have ms if you don't have any symptoms? Have you read the book "The Gold Coast Cure" - a great read to find out what supplements to take and what you should eat to stay as strong as you are now -a good place to start if you have recently been diagnosed. Montel Williams has ms - he occasionally has some really good shows about it. By the way, what state do you live in? I live west of Chicago. Good luck!!!!

Hi Jean,

As Far as my symptoms, I went to pick up my 2 year old, and my fingers in both hands felt funny, almost an over sensation...i kept pushing the doctors to find out why, my primary doctor was trying to blow it off and tell me i was a stressed out stay at home mom,,, and then the testing slowly began....if I would not have demanded that all of the testing be done, I probably would still not have a diagnosis...so literally that is it, nothing else....I live outside Buffalo,NY, which from what i've learned is rampant in this area...I will keep you posted on any minocycline news, as well as my scan progress,,,the center im at is watching this as close as they possibly can, because Im not on the approved meds..thanks for the advice on the books etc...good luck to you..it's nice to talk to other minocycline users out there :)do you know anything about the minocycline trial that the neurologist suggested to you? it is very difficult finding any write ups on it , except for the one 10 patient one done in Calgary, canada,,,as far as montel, he bugs me :)...his shows, i think are counter-productive.....:)

Hi Alison,

I know that you have had a cervical MRI. Have you had brain/eye/thoracic/lumbar MRIs and a spinal tap? The minocycline trial was going to be at a hospital complex in Chicago. I don't know anything else right now. The trials talked about online all seem to be from a few years ago. I hope they haven't abandoned the research on minocycline!

I found out about the book "The Gold Coast Cure" from Montel. It has been so helpful. Some of my symptoms seem to be greatly influenced by food. I eat a lot of anti-inflammatory foods now and foods high in antioxidants.

I was diagnosed with RR MS March 7th 2007. It started with numbness on the right side and the MS Hug. I had a CT scan in the ER and it all unravelled from there. I have 11-12 leasions on my brain, some in the Dawson's finger configuration. I also have Utoff Symptom. My right side and eyes are the most affected. I had 5 MRIs and an MRA, no visible lesions on my spine at all. I was diagnosed with mild cognative dysfunction after being tested by a Neuro-pschologist. I am on Copaxone, but the shots are very hard to do every day. My MS Dr. is very much into Copaxone trials and I would love to find a different solution. I am looking around for a new Neurologist who is closer and more homiopathic. I am wondering how I would bring up using this antibiotic therapy with my Neurologist?

Hi Dawn,

Sorry to hear about your diagnosis, but Really, you will be okay :) Just ask your neurologist about the minocycline, or pull information from the internet regarding some of the research..and bring it it to them...Also, let your neurologist know that the daily injections are difficult...This is the way I put it to my neurologist. I asked them to give this a chance for just 6 months, and if after the 6 months if the disease has progressed, I would do the injections...I am coming up on 6 months at my april 23rd scan, and they have already given me another 6 month script for the minocycline :) ..the problem is, nobody knows if this in fact really works, and with the abcr meds only being 30% effective , it kinda seems like a no-brainer to give this a try...I was actually surprised that my MS center was so open too it., and that they actually gave me a script for it..I also thought I was going to have to go to a homiopathic. I also have some of the research, so ask Jeremy for my email, or I guess I could post it right on this site...Also, I know they are starting to research using minocycline and copaxone together...I know, I felt the same way about the injections...yuck!!!Is the copaxone making you feel better...??? although it may be difficult, if the copaxone is keeping the disease at bay, maybe you could tough it out ....good luck to you...hopefully, they will release an oral medication...sooon....or for that matter a CURE!!!!!!

Hi Dawn

Could you please explain Utoff symptom. I am not familiar with that. Thanks.

Hi Alison

If you go to www.paratekpharm.com/pt_tet_tc.html you will find a little info on the development of a non-antibacterial minocycline

MRI Update- Today is April 24, 2007 and just had an MRI and follow-up. There has been no progression, and a slight reduction in the brain lesion. Wanted to keep posting my minocycline updates, since I am taking an alternative therapy. The MS center doesnt know whether it is the minocycline that is keeping this at bay, or potentially somewhat benign MS. Whatever this is, it is working for me. They are keeping me on this med, and want to do another scan in 6 months.

Alison - Congratulations - so glad it is working for you!!!!!!
Jean

Jean, how are you doing? did you up your dose of the minocycline?

hey jean,

it's Alison...i located an article, got the full text from another minocycline user, but anyway, it is updated info as of may 1st....http://msj.sagepub.com/cgi/content/abstract/13/4/517 and then once you are in go to pdf, full text.... anyway, i found this very interesting, especially for you because it looks like this has been done on the same 10 people they have been studying for a while, but now over a 2 year period,,,anyway, the only person who had a flare-up was on a half dose of the med, which if i think i remember, you said you were only on a half dose,,so anyway,,,happy reading,,,i was so happy with these results, although only 10 people....how are you doing???

Hi Alison - thanks for the info - I haven't been to the doctor yet - soon. Those results are really encouraging - I am doing fine - but I really want to get my dose doubled. Yahoo for oral medication.

Hi Alison

I got my dose doubled - everything going well. Thanks

Jean,

I am so happy that you got your dosage doubled.....please keep me posted on your progress..I go for another scan late October, so I will post results....how are you feeling? have you had any flare-ups? I have been absolutely fine, I still really wish they would do more research on this medication though.....

Hi Alison,

I was diagnosed in 1998, I am 48 now, I used to be on avonex, couldn't stand staying sick or the shots, I got off it, and now my dr wants me to start the copaxone, then I was reading about minocycline. I would like to talk to my dr about it so could you please tell me what doses I would be asking for or what I need to take with this? I would like as much info as posible before going to him with it. Thanks so much Teresa

Hi Teresa,

I take 100 mg oral pills twice a day...so one in the morning and one at night. it is that simple ...i feel fine, have energy, and am never sick...When I was diagnosed, I just asked my neurologist, which is an MS clinic in Buffalo,ny to let me try this for 6 months, and if they saw any changes in my MRI's , i would go off the medicine. They have been doing scans at 3 month intervals of both my spine and brain, and there has been NO PROGRESSION...:) I posted this article earlier, but this gives the most recent info, on any studies being done....http://msj.sagepub.com/cgi/content/abstract/13/4/51 When I was diagnosed i joined an ms group ,i think on yahoo, and started talking with another minocycline user....he has also been in complete remission for years, while taking this medicine...he phrased it to me this way....this medicine is ONLY if you have R/R MS ,,,you will never get better with this medicine, but you wont get worse, it will keep the disease at bay,,i truly believe this medicine is not being researched further, because there is just no money to be made....anyway, good luck to you, if you ever want to talk further or need additional info, please either email through this site, or i can give you my email direct, i would even be happy to talk to you on the phone reg. the minocycline.....the neurologist also was willing to put me on copaxone and minocycline together, i guess they are studying this somewhere...if you need any additional information, please let me know:)

hi i was told last wk i have ms and im very scared of rebib and i was wondering what made you decide to take the oral meds and if it seems to have any long term problems. thanks so much

heather

Hi Heather,

I was also very scared of taking any injectibles, I cant stand needles, and I did not like the potential side effects I was reading about. I have 2 small children at home, and thought the side effects would be a lot to deal with....so for me, i needed to search for another solution. After talking with people, who were taking minocycline, and reading all of the research, that is what made me to decide to go this route......there are really no long term side effects of this medication..except, they say any long term antibiotic use is not good...the way i am looking at this, is i just need this medicine to work for another 2 years until an approved oral medication comes out on the market......i feel great, there has been no progression of disease since last october, so 10 months...woooo hooo!!!! anyway,,,please email if you need more info....goood luck to you!!!!!

hi thanks so much for responding - i mentioned it to my dr today and he said he had never heard of it being used for ms before. of course he hadnt why would he? im very interested in it i to have 2 kids at home and am super scared of the side effects. i feel so sad and confused and just dont know what to do. im trying so hard to change my life style from attitude to vit, and a healthy healthy diet. i feel like im going crazy trying to research ms and do whats best. people dont understand just because we look good that doesnt mean we feel good. sorry im kinda mad right now. if you have any advice on how to make people understand or any diet or vit ideas please let me know.

thanks
heather

Hi Heather, hang in there. When I was first diagnosed, i went through the same emotions, and especially tough because you have your children to think about and want to be happy for them. Maybe just try surrounding yourself with people who support you, and want to try to help you...it doesnt turn out to be many, as ive learned...:) are you with an MS center, that helps as well, they could maybe help you....As far as vitamins, I only take fish oils from a website called www.inflammationsolutions.com...make sure you get advice on exactly what type of vitamins to take, cause the last thing you want is to bring on a flare-up...also, if your doctor is not open to prescribing it, maybe try talking to your primary care physician, or maybe even a doctor who specializes in alternative medicine.... were you diagnosed with r/r...what are your symptoms...?? I feel fine, so i think it has helped me in accepting this diagnosis, and now more so, because it has been a year,,, good luck :))) what part of the country do you live in,,,i live outside of buffalo, ny...

heyyy - i live in tx :) he hasnt diagnosed me yet, he said looking at me he doesnt believe im very bad at all but he hasnt got my spinal results back yet. hes been a neuro for like 24 years and so far has been good so i hope hes right. have you ever seen anyone else on this med.? and if so what so they think about it? ive been trying to reasearch it but i havnt found alot of info yet. thank you so much for being so helpful no one understands ms unless you have it.

heather

Heather,

It's funny you ask if i've seen anyone else on this med, because that is exactly the same questions i was asking when i was 1st diagnosed. The answer is yes, I talk to a guy quite frequently who has been on this for atleast 3 years. Before he went on minocycline he said he was having flare-ups every other month, and then switched to minocycline from one of the abcr drugs, and has not had any progression since. I can put you in touch with him, email me offline regarding that and i can get you his info, i have even talked to him on the phone reg. the minocycline...he is very helpful....also, in a former posting, i pasted an article on the research /trial which is sooo small in Canada...the 13 people they have on minocycline havent had any progression in about 2 years....not one of them......my neurologist is not sold on this minocycline,,,,noone knows if it reallly works, because the trials are just sooo smalll...but hey, isnt it ironic, that alll 13 people had NO PROGRESSION,,,there has to be something there with this medicine...okay,,,now im babbling....take care!!!! ohhhh, there is also someone else on this website, i think her name is jean, who is taking minocycline????,,,

I was put on minocycline for adult acne several years ago while also taking avonex. After 6 months I saw a big improvement in my symptoms. My MS got less and less noticeable. When i went to my neurologist for my regular once a year check up he was amazed at my improvements. We went over my meds and he saw that i was now on minocycline 50mg's twice a day. He said no wonder your doing so well. He told me that there is a study regarding Minocycline and MS because dr's noticed that their patients who were taking this dose for adult acne showed improvements. In many cases lesions got smaller and or completely went away. My neuro sent me for new MRI"s and they showed that my brain lesions were gone and the ones on my c-spine were barely noticeable. This was 5 years ago. About a year and a half ago i went back to work starting my own business. I'm not on any of the injectables and have not had a relapse in over 5 years now. I haven't had to take any steroids and in fact went off of all of my meds all together. I now only take 50mg's of minocycline 2x's a day and nothing else. No more baclofen, or neurontin or meclizine... nothing else period!!
My BIL was diagnosed with MS about a year ago. I've tried to convince him to try minocycline along with his injectables but he hasn't. My husband has urged him to give it a try saying its just a mild antibiotic that is less harmful to you than these injectables but nothing he's said could convince him to at least try it for a few months.
I work for myself 6 days a week. SUre i have fatigue and i'm still heat sensitive but nothing like i was before. I don't have to nap at all during the day. IN fact i get up at 5:30 every morning with my husband eager and ready to go to work. I leave my shop at 7pm every night, go home and cook dinner and watch tv with the family then go to bed with everyone else. Its nice to be among the living again. I wish this for everyone!! Keep up on the minocycline Alison its well worth it.
Veronica

WOW!!!! that is great...thanks for posting...it is nice to hear from another minocycline user!!! I just wish they would do some more research on this, it could potentially help sooo many people...but to be realistic, that will probably never happen, cause the bottom line is money,,,,there is noo money to research it, and there is no way anyone would make money on a 40 year old mild antibiotic......good luck too you, sounds like your doing awesome!!!....could you post updates on your health, if you wouldnt mind, it would be nice to be able to keep track of those of us using minocycline??? I will be posting my results from my scan , i think it is October 16th...:)

Alison

hey just wanted to let everyone know ive started minocycline twice a day at 100mg. ive only taken it one day and i started feeling dizzy and light headed. the phar. said those side effects should go away once my body is use to the meds. it was suggested that i skip today (day2)and start tomorrow at just one a day for a wk or so. just wanted you to know

heather

hi heather,

good luck to you!!! could you please post regarding your progress, any relapses, progression, etc. thanks....alison

Hi - I'm 43yrs old and live in the UK. I've been diagnosed with MS since 1988 but been sick with it since about 1980. I was dx SPMS in 2003 and went downhill very quickly. I have never been offered any drugs at all because I didn't have a relapse between 1988 and 2003 and by the time I had the 2003 relapse the neuro said there were no drugs for SPMS!! Just to let you know I have (with my kind hearted GP) started taking 200mg minocycline per day. It has now been one month. So far, so good! No naps during the day, I can walk about 200yards, my bladder is fine and I just don't feel generally ill (which is a great relief!). I'll keep you updated if you like. Nice to read your account, Alison.

WOW!!!! that is awesome news......PLEASE, PLEASE,,,,keep me posted on your progress,,,,i truly hope this minocycline helps you get better, even if it just a little bit, please also keep us posted if your MRI results change at all

Alison

Thanks Alison. I'm afraid that I only had one MRI and that was in 1988!!! And the way the NHS works (in re MS treatment), I shan't get another. But I can let you know how my physical progress goes. Good luck to you and to the other bloggers! x

WOW!!! that is really unbelievable how the health care system is so different here in the U.S. I have had 5 MRI's in the last year alone, on both spine and brain.. Good luck to you as well...

Alison

This message is for Jean who posted earlier... do you have double vision when you look to the right with both eyes which goes away when you close one of your eyes? Is your double vision because your left eye doesn't follow to the right but instead moves upwards? And do you have any increased sensations when you move your head forward or backward (like a grabbing in one of your legs?).

Hi - I have double vision whether I look to the right with one or both eyes. If you have an eye MRI you will find it is because of a lesion. I find the double vision to be greatly affected by food. Also, if I am hungry, it also acts up and moves more towards the middle, which is annoying. Most of the time it stays way over to the right and isn't that noticeable.

I just had another MRI since i've been on the minocycline since October 2006. It has been 17 months since my over sensation in my fingers.. and one whole year of the minocycline!!! There once again has been NO progression. I got out of the MRI machine and my neurologist was already reading the results, thats why I got them soo fast!!!! goto go celebrate!!!!!!!!!!

Congrats, Alison!!!!!!!!!

Hi Jean,

Thank you for your response. My questions were based in a series of symptoms I have had which resemble MS but are not diagnostic of it. All my problems started 4 years ago when I hit the side of my head and hurt the nerves in the left side of my neck. I recovered over a period of time but started having Lhermittes symptom down the back of my left leg and when I received an MRI, they found a bright spot on my spinal cord at the C2 level which the Docs couldn't explain other than a possible demylinating lesion. I think it is a scar from when I injured my neck (wishful thinking?) I have been dancing between MS and Radiculopathy for the past 6 months due to a change in feeling in my left hand and tugging feeling in my left leg when I flex my head. Both could be caused by MS or structural issues with the vertebrae which I have. I also developed double vision when I look to the right but my doctors say it is not diagnostic of MS because it more closely resembles the diploplia children get when they don't get corrective lenses. But the Doc's are puzzled because they don't believe adults can get this also. But that is what I think because I continued to wear an outdated prescription lenses for a few years rather than get it changed (more wishful thinking?). Anyway, a recent MRI found no suspect lesion on my eye or cranial nerves. Yet, they found several small white matter lesions in other areas of my brain that the radiologist said could be attributed to aging or migraines rather than being diagnostic of MS. In any case, I started on minocycline as it helped my arthritis in the past. Personally, I believe that MS and RA are related because both may be attributed to a mycoplasma bacterium that can hide within human cells. I think it can cause an immune response in people who are sensistive to it, much like an allergy. The key factor here is immune activation and inflamation... same as in MS. So, I believe that the minocycline, which has been demonstrated to be lethal to mycoplasma, works not only because it stops inflamation, but also because it is killing the root of the problem. But it takes months (years?) to kill off the mycoplasma and many more months for the immune system to normalize. Like HIV, the mycoplasma may also be able to continue to exist within the cell membranes of its host, protected from the full effect of the minocycline. And it is almost impossible to culture this germ. In any case, I hope the research community will take minocycline therapy a little more seriously given that it has been demonstrated to be a neuroprotectant and, in small but promising studies, effective. Well, I am off to get some evoked potentials tests done soon... best of luck to everyone here as well!

Hi Mark

please keep us updated on your minocycline, and test results, if you wouldnt mind? you seem very knowledgable, on how the minocycline could potentially benefit MS people. I have been on minocycline for a year, with no progression. there has to be something with this medicine, and i want to know why it is not being studied? I have never heard of anyone having a relapse while taking this as treatment? Do you think there is anyone we could talk to, as far as pushing for further studies on this? or is there just really no money to be made? what are your thoughts? how were the evoked potentials testing?

Greetings.

For those of you who may be new and have not heard about
Minocycline and MS, I have been taking ONLY Minocycline for MS since July 2002(a little over 5 years), and have not had any more attacks or lesions on my MRIs.

Since I started taking it I have been gathering informational files, articles, trial information/results and documenting my own experience
with Minocycline, which Alison had been reading/exposed to, then had her doctor start her on Minocycline as well

If you would like to learn more about it, you can follow this link, which will take you directly to the FILES Section of the ms20someting Group at Yahoo. You have to be a member of the group to get in, but that's only to keep out spammers, so all are welcome.

http://tinyurl.com/bszz7

On another note, there was announcement today that there is going to be another Minocycline Trial consisting of 200 MS patients across Canada.

Here's a direct link to that press release.

http://tinyurl.com/yvky3h

Thank You.

Respectfully,

- Ian
ms20something Group Moderator

Wanted to post some discouraging news regarding minocycline, but am still optimistic in its use for MS....this particular study was concentrated only for ALS......but wanted to make sure I even post the negatives :(

Investigators Urge Caution: Results of a large-scale, placebo-controlled clinical trial of minocycline involving 412 patients with ALS over 9 months of treatment found that neurological deterioration was faster in the minocycline group than the placebo group. ALS (amyotrophic lateral sclerosis) is a quickly progressive disease that kills motor neurons, the nerve cells of the central nervous system that send brain messages to muscles. Earlier smaller studies on minocycline in ALS had suggested it was safe.

The phase III trial, results of which were published in The Lancet Neurology (early online November 1, 2007), was conducted by Dr. Paul Gordon (Columbia University, New York) and colleagues with funding from the National Institutes of Health. In their paper, the authors caution that their results compel the need to re-examine the justification for other trials of minocycline in other neurological disorders.

ALS:

http://tinyurl.com/2hryo2

Luanne Metz, Neurologist from the University of Calgary, who is involved with the Minocycline trial and Multiple Sclerosis doesn't seem to have a concern about these results for relating it to MS.

Personally I can't see a relationship between ALS and MS that would point to the possibility of accelerating the progression of MS by taking Minocycline.

I'm not a doctor, but that's my opinion.

- Ian

I've located a better, more detailed article on the Minocycline and ALS.

http://tinyurl.com/2k59ar

- Ian

Just an update... I saw my Neuro recently and he said he didn't place much faith in Evoked Potentials (odd?) and gave me a referral to John Hopkins... Seems I am a strange bird.... an anomaly.... When I asked, given all his experience, what my symptoms most resembled, he said he never saw a case quite like mine... he said he was sure I did not have Primary Progressive MS (since I can still walk okay after 4 years), but that I could have some sort of "Benign" MS... but he didn't know for sure. Hence the referral... I will keep you posted on what JH says.... On another note, I was on Mino for a 5 weeks and then went off it for a week because it upset my stomach and makes me somewhat depressed and anxious at the same time... but overall these symptoms are bearable and I plan to restart Monday... However, I feel my mental fog lifted on the Mino and I feel overall much better... neurological symptoms in my leg and arm greatly subsided... In closing, I would like to bring up an interesting note; When the Falklands were invaded by British commandoes back in the 80's, a nuumber of women subsequently came down with MS which had not been known on that island previously. Again, this suggests some sort of pathogen that can be transmitted (i.e., mycoplasma?). Perhaps antibiotic therapy does not seem to work in some clinical trials because sufferers are constantly reinfected by their partners... I know for a fact that many men suffer with chronic prostatitis that results in negative cultures but which in fact is caused by mycoplasma type organisms. But because nothing shows on the tests, doctors provide one or two courses of antiobiotics and then ignorantly allow these men to suffer the rest of their lives with a chronic condition that could be cured if both partners are treated. And surprise, the same pathogen can cause a reactive arthritis. It should be pointed out that even if the patient is cured, each time he is reinfected, the arthritis becomes more difficult to get rid of because the immune system goes more into hyperdrive. From what I have researched, women only need to be treated for 10 days in these cases (as they don't have prostates) and men three to six months to be cured. Again, I wonder if a short course of antibiotics for a partner of an MS patient on Mino might be helpful... especially early in the course of the disease (Please note this is a question as I am not a doctor). Lastly, it is unfortunate that Mino failed to help the ALS sufferers, but ALS neurological deterioration likely operates in a different way than in MS. Additionally, the study in Canada showed that Mino can help people with MS and all other data points to Mino being a neuroprotectant AND!!! a recent study showed Mino to be very helpful in people who had just experienced a stroke. Anyway, I hope I provided some food for thought and I will keep you posted. And remember... stress is your worst enemy, so don't worry about tomorrow... enjoy the little successes in life:)

Mark,

I've known several people that have had Upset Stomach type symptoms when they first started Minocycline as well.

the way that we were able to work around it was to taper your body on it. Start off with 100mg once a day for a week or two, then move up to the 100mg BID (twice a day).

One person actually had the 50mg to start off with, so instead, they're going to start with 50mg once a day for a week, then 50mg BID (twice a day) for a week, then 100mg in the morning and 50mg at night for a week, then the last week of taper, to take 100mg BID (twice a day).

The thing is that your body is just not used to it, so by gradually increasing the dosage you should be feeling better while taking it.

- Ian

Hey, FYI - I just learned that calcium blocks the absorption of cyclines, so don't take other supplements within 2 hours of taking the minocycline

Jean,

The calcium issue is related to the anti-biotic components of the Minocycline. That calcium warning is for patients taking the Minocycline for Acne.

The Anti-biotics do nothing for the MS, but it's actually some other non-biotic component that triggers the pathways of the blood brain barrier to shut, thus preventing the attacking cells from getting in and attacking you.

Happy Holiday!!!

- Ian

Thanks for the info, Ian. Happy New Year to everyone!

Hi there...I've been reading posts on here..and i'm quite interested in this minocycline/ms thing.
I haven't yet been diagnosed with MS..I'm still in limbo. I'm thinking about asking my doc for minocycline..I'm not so sure what she'll think of it or how i would go about asking her and my ms neuro is quite old school so i'm almost positive he won't give me a prescription for it.
Anyway..I see nobody has posted here in a few months..Just wondering how you all are doing on it??
Also I just read a site about minocycline induced lupus..anyone ever heard of this??

Hi Kim,

my name is Alison. I posted the original entry on minocycline, and have been taking it for 2 years now, or almost, and have had huge success. NO NEW LESIONS...The MS has absolutely no effect on my life, i am very active, and run around with my 2 children alll day!!! The neurologist watches me closely because im not on the approved meds,(4 mris's in the last year) I have had no progression since my diagnosis,which is right when i started the minocycline. My next scan is in June..I have never been on th ABCR drugs, and have NEVER had any steroid treatments!!! I have never read ANYWHERE, that anyone, the few of us who are taking it, have had any progression of the disease!!! This only is beneficial for someone who has r/r MS. If you have any neurologic damage already this wont make it better, but maybe it will help it from ever getting any worse. I am NOT a doctor, just a 34 year old mom, trying to explore the best course of treatment for me. You have to do your own research, and come up with a plan that is best for you to deal with this.... you need to find a doctor who is willing to work with you... Have they determined you actually have MS, and need to be on medication? Although you may have a conservative neurologist, I would still bring this up as an option. As I have mentioned in previous posts, maybe you could ask to go on it for just a couple months, and if its not working, then you will go on the ABC'R meds. When you think about it, it is trial and error with the ABCR drugs as well....If one isnt working for someone, they will try one of the other ABCR meds. As far as the side effects, the drug induced lupus from what I've read, will subside, or somewhat if you go off of the medicine. So if you were to get this very rare side effect, you would have to go off of the medicine, and look into other options. just like you would have to do, if the ABCR meds werent working for you. There are potential side effects from any medicine you take, including the ABCR meds. Good luck to you in finding answers, if you need any other information please let me know.. Also, if any other minocycline users are reading this, how are you doing?,,any progression?

Hi Alison, Thank you so much!

I have not yet been diagnosed. October 2006 I had a bout of Optic Neuritis which i guess is quite common in MS. Other than that I felt great.I did have bells palsy a few years before ON but my neuro won't diagnose me without having 2 separate attacks and he's not so sure if my bells palsy had anything to do with MS b/c it's such a common thing in people that don't have it. So it's a waiting game right now. He's also not willing to get blood tests from me to rule anything else out..i'm just confused .Although i do feel fine right now i'm not willing to wait as we all know that if i have another attack it could be much much worse and like you ,i have 2 small children to keep up with.
I can't afford any of the approved drugs for MS so i have been researching alternative ways.
I'm going to bring this up to my doc when i see her again in the next week..I hope she's open to it..or at least lets me try it out..It is my health after all and i'll do anything to stay strong and healthy for my kids.
Do you have a good site that i could print off and show to my doc about Minocycline?
And also what about the grayness of teeth after long use of antibiotic?? Have you experienced this?
Thanks again Alison...and congrats on NO progression...Great news!!

Kim, good for you for taking the initiative to learn as much as you can. I always recommend people get a second opinion - you may find another doctor would be willing to do the blood tests that your current doctor is not. Best of luck.

Kim,

There is obviously something going on with you....as far as what, you wont know until alll of the proper testing is done..I would suggest finding a doctor who is going to do the appropriate testing, blood tests, and you really need an MRI? have you had one? Is this a neurologist that you are seeing? I would tell your doctor, that you are not willing too wait for another relapse to confirm the diagnosis...Do you have a general physician that you see? in buffalo, ny they are called PCP's, or primary care physicians....they may be able to prescribe the minocycline as well, as far as the grayness turning of teeth,(no turning yet), but i really dont even care if i have teeth, or what happens to them, if i can stay healthy, and walk....so yes, i guess it is a possibility with long term use, but it is a chance i am willing to take...i will get some info over, but i think in previous posts, i have posted some articles, the main one, is the research being done in Canada, at the university of calgary.....it is great that you are taking complete control of your health, and trying to get answers,,,i would really push for further testing....please keep in touch...there is a guy named Ian, who posts occasionally on this sight,,,who has soooo much info on minocycline, and was very helpful too me through my diagnosis, and determining which treatment was best for me, i could put you in touch with him...what part of the country are you from?

Thank you..
My problem with finding doctors right now is that we live in a small town. We don't have an actual neuro in town..My neurologist has to fly in every so often. So as far as finding a doc to prescribe me Minocycline is going to be tough if my regular doctor won't.
Now i'm also hoping that my regular doc will help me out with the blood tests. I'm not so sure why my neuro says theres no need for them.
But i will be seeing her within the next week so i will keep you updated. I just don't really know how to go about asking her for Minocycline where i haven't really been diagnosed yet. I'm still in that probable stage so i wonder if that makes a difference.

Hi Alison
Yeah there is definitely something going on. I am in B.C, Canada and I do have a neuro but like i said he's quite far away..he's in Vancouver and i'm about a 17 hour drive away from there..so he flies in every so often. I also had an MRI done..they did find lesions but he's still not convinced yet until i have that second attack. I'm not so sure if he knows it is and just won't tell me or what. So after I had my MRI I told my PCP that i really couldn't afford any of the MS drugs and she told me that nobody that she knew that had MS was on them...Whenever they have a relapse they go to the ER and get steroids...So that confused me a bit more.
Yeah I don't care about the grayness of teeth either...just wondering..haha..
I would love for you to put me in touch with anyone who is willing to give me any info on this.
and thank you so much for your help!

Kim,

good luck to you...i really hope you find answers..i didnt mean to sound harsh in my last posting,,,do you still have optic neuritis??? i will post some information later today...for you too take to your regular doctor..do you have any acne? because maybe if you did, you could go on minocycline for that..have you had an MRI?

It's really great that you are posting all this information for others. Thank you for doing this.
I was diagnosed with RR MS about a month ago. It has been a long 6 months for me. It all started with pins and needles feeling in my feet and over 10 days spread to include everything from my arm pits down to my toes, including half my arms and hands. Since then I have had some difficulty from time to time with dropping dishes etc. and with walking. I had a repeat MRI and it showed no new lesions and that my old lesions have healed. I have 3 very young children at home and am beyond uncomfortable about the idea of having injectible medication in the home or even using it for that matter. Anyways, I am wondering if anyone else had such a dramatic first episode and how family and friends respond when you tell them that you are taking this medication that is not an "approved MS" treatment. Thanks

Krista,

sorry to hear what you are going through, but it will get better, once you get everything figured out as far as which medications to go on....but you should really get on something ASAP,(if you have actually had a confirmation that you do in fact have MS,,definite, and that they have suggested that you do on meds) to stop anything from progressing...if not for you, for your kiddos...As far as your old lesions healing???,,are there no lesions at allll on your MRI now???? not even the exisiting ones???anyway, you will be fine, you just have to take control of this, and not let it get you....as far as family and friends,and my husband, they have all been supportive(atleast close friends), I go to a world renowned MS center, who has agreed to try this medicine with me, so there has to be something with it,,,so i think they feel very comfortable that I am in good hands,if I HAD decided to go to my personal physician, or someone else, they my have been a little skeptical, but this center also watches me as far as MRI's every couple of months,,,so all is good....after every MRI result, i tell the neurologist i have to use the bathroom, and run in and call my family to tell them the great news,,,anyway, things will get better,,,,you just have to get it all figured out as far as how to proceed, so you can feel good,,,for a long time!!! good luck

Alison - On Thurs, May 22nd, at healthtalk.com there was a webcast about oral therapies for ms. You can go there at any time and listen to the webcast (about an hour. They mentioned you can go to www.clinicaltrials.gov to see what clinical trials are on the horizon and which ones are currently going on. Nobody during the webcast even mentioned minocycline - very frustrating. I personally think that because minocycline is already out there and is so cheap, nobody is really looking at it seriously, which is crazy, since it is not only anti-inflammatory, but also has neuroprotective properties.

Anything new from Alison or others on minocycline? Haven't seen any recent posts.

Hi everyone,

everthing is great...i go for my 9 month scan in mid June ..i will post my results,,,they are read on june 16th...it is completely frustrating that they are not doing much atleast in the US as far as researching this medicine...because it has stopped my disease completely!!!so this is why we just have to fight for our own health,,,Jean, how are you doing, are you still on the minocycline?

Hi - I'm still doing great on the minocycline - my neurologist is very excited - I am her only patient on minocycline - she is very open-minded, so is very ok with it!!! Glad to hear you are still doing great!!!!!!!!!!1

that;s funny,,i am the only patient also, at the MS clinic in Buffalo....anyway, so happy to hear your news,,,,it made my day :) anyway, Jeremy I will also post topics, this is a great site, I think you are really helping people cope with this disease, and also people are seeing that it is a livable disease for some of us!!!!thank you!!!

I just got the latest results of my MRI;s ,,,and no progression, so I am going on 2 years, since diagnosis, and using minocycline as my only therapy to treat the MS

Hi all,
I have had MS symptoms and diagnosis since the fall of 2006--coming up on two years now. I have never had a remission, but I don't really get worse. I'm not on meds. I wonder if anyone like me has tried the minocyline and if so has it helped. I wish someone had told me about the minocycline when I was first diagnosed. Also, I was wondering if there are currently minocyline trials for MS underway, or have they all been completed.
Thanks.

Hi,

from what I have been told, this works for people who have r/r MS. What type of MS have you been diagnosed with? Are you currently taking any of the FDA approved drugs? if you are not, i would get on something ASAP to stop this disease. there have been studies for minocycline in Canada. They have completed trials in Canada with much success. if you read through prior postings , i think i have provided links.....they have not studied minocycline in the US...why, i dont know....cause it has completely stopped my disease...good luck to you.....get yourself on something though, so you dont progress with MS