I'm going to try and convince my Lyme doctor to put me on Minocycline.... a common tetracyline antibiotic. Apparently, it crosses the blood-brain barrier very well and exerts neuro-protective/anti-inflammorty effects
In the rat model of MS, the results were quite good at suppressing further MS-based disability. Google: Minocyline, Rat Model of MS (encephalomyelitis).
It's just going into clinical trials now.
I have been tking it for about 2 months. I don't know whether itis doing anything. what should I be looking for? I have also started capaxone. When My doc prescribed the mino she said it may help but won't hurt. still have to wait for te clinical trials. Hope tis helps. Feel free to ask questions. Newwoof
I Don't really know what I am supposed to be looking for. I hope that it works things out quickly. I have been relapsing for the last couple of monthes. rehabed myself back to walking after the first relapse. Now I am in a chair full time and waiting to have the attacks settle before I try to get walking again. I have high hopes for the copaxone. The only side effects that I have noticed is the pain at injection site, and nausea. It's fun trying to inject yourself while having a tremor. That really sucks. I am going to try and stick with it for a year and see how it goes. I am new to this. I have been living with it for so long its hard to remember what is a new pain, or symptom. Only been diagnosed since March. This sucks this sucks this sucks. Thanks, I needed that. Taking Cesamet for pain but looking for other ideas too. I looked up today and saw the end of summer coming. Man I have not done anything for 6 monthes. is this normal?
Thanks for the ear
Hopefully the Copaxone will slow down the attacks, so your body can recover a bit.
I haven't really done very much lately either, but I'm trying to re-integrate myself into society, as I've been feeling a little better lately. (despite the growing muscle weakness in my arms). My strength is up and the cognitive crap is at a tolerable level now.... thanks to what I've been doing with the diet/supplements.
For a while, it was difficult to just sit and watch TV. Or focus on anything. I felt completely removed from reality.
I read your post with great interest. After reviewing some additional publications on Minocycline, it definately appears to have potential.
There are good in vitro and animal model studies going back to 2002 with this drug.
"Targeting leukocyte MMPs and transmigration: minocycline as a potential therapy for multiple sclerosis."
]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=A bstractPlus&list_uids=12023318&query_hl= 17&itool=pubmed_docsum
"Minocycline attenuates T cell and microglia activity to impair cytokine production in T cell-microglia interaction." http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
"Minocycline reduces gadolinium-enhancing magnetic resonance imaging lesions in multiple sclerosis."
...plus many, many more.
The caveat with all of these studies is they are are modeling the disease. In the rat and mouse model the "encephalitis" is induced by injectining myelin (pieces of protein that coat the neurons) and other molecules that get the immune system hyped up. The move from "mouse to man" is greatly different (immune behavior, physiology, etc).
However, I did come across a very nice study looking at the efficacy of minocycline in humans. Published in the Annals of Neurology in 2004.
My doctor did let me try it, unfortunately it caused me projectile vomiting and extreme motion sickness. Not to mention extreme GI problems.
I wonder if doxycyline would have similar effects, but without the dizziness? Who knows?
Interestingly, there are a number of minocycline studies involving primates too. Apparently, with AIDS related encephalopathy.
Due to the bad luck with Minocycline, I've been taking curcumin instead, an extract of Turmeric.... apparently it's able to reduce production of inflammatory cytokines, like tumour necrosis factor, which are implicated in MS-like illnesses. It has really helped to tone down a lot of my symptoms.... although I still seem to be progressing.
Unfortunately, I think Bromelain/Papain/Amylase-- a proteolytic enzyme I've also been taking-- is the cause of my recent exacerbation. While it suppresses certain parts of the immune system-- i.e. prostaglandins-- it apparently stimulates other areas, i.e. inflammatory cytokine release, ala tumour necrosis factor. Which really makes me wonder why so many MS sites are touting it as a supplement? Am I missing something here? Whenever I take it, I only seem to get worse.
I'm also trying out the Lyme/chronic infection angle again.... by taking Amoxicillin.
I totally know what you mean, It would sometimes take me a week to watch a movie. Between falling asleep during the movie, forgetting what was going on in the movie, as well as not really caring I was over a barrell as far as making it minute to minute. That was a pretty good rant. Thankyou so much. Finding people who understand is very key to recovery, I think. It's nice to be able to go off and have someone get it.I'm having a good day today. I stopped the Copaxone for 4 days and then restarted. Things seem to be leveling off a bit. I did not have as much pain. That gives me hope that maybe the pain will go or at least lesson. I am taking cesemet for the pain but leaves ya dopey. I love the 7 dwarfs but dopey is not my fav....lol talk to you later .....thanks.
I tried the mino also (I have lyme too) but it made me so dizzy. My balance is terrible to begin with so I had to change abx.
Have you ever heard of low dose naltrexone? I started a thread awhile ago on it and didn't get much response. If you are searching for other options this may be one you might want to look up. It seems to have alot of uses, HIV, cancer, MS, Crohns. I haven't tried it yet. I am anxious to, just trying to get a rx, so I can't speak from experience. My LLMD is looking into it.
I've heard some good things about LD naltrexone. It's an opiate antagonist correct? They often use it in Heroin addiction/overdoses. Apparently it interferes with the body's uptake of natural opiates, Endorphins, in some way. Proponents believe that it resets the immune system, and somehow regulates autoimmunity.
I haven't checked out any studies on it yet (I will in a bit) but lots of MS/ALS patients say it really helps.
Still, the one thing that has really helped me is Curcumin-- isolated from Turmeric (basically curry). Like Minocycline, it apparently downregulates inflammatory cytokines (though probably not as well). It has basically gotten rid of my cognitive problems/excessive fatigue. Although the hands/arms/legs weakness still stands.
Most imporantly I'm starting to think I may have something bacterial like Lyme, as the Amoxicillin I'm taking is really helping! I no longer have any fatigue! Only muscle weakness. I'm feeling hopeful again. Though not too hopeful, as I may be twice as sick next week.
You are right about the use of LDN, but the FDA approved dosage for that use is 50mg. The LDN that is getting alot of attention is 3-4.5mg. There is a study being done on Crohn's disease at Penn State and the first trial results were favorable so the NIH (?) has given a larger grant to continue the study. I recently read that the MS Society has given a small grant to start a study re LDN and MS. The ancedotal info for use with MS has been that favorable.
If you ever want to talk I read the lyme board everyday, although I haven't been posting much lately. I check in here once in awhile. Good luck and maybe we'll be able to compare notes on LDN soon.