I did a search for any studies on MG and naltrexone and came up with none. I will read about the drug in general. Are you on it? Will you let us know how it works? I see you are from LA. There is supposed to be a good MG doc at UCLA. Is this who you see? Thanks. Sarah

My experience at UCLA was not a good one, at the MDA clinic. However, through the MDA support group I met a man who was being treated by a different UCLA nuerologist that was fabulous.
I receive care in Burbank out of Providence St. Joseph's Hospital. Thank-goodness my nuerologist is younger, Stanford trained, and a bit more up-to-date so I will feel comfortable bringing him this query.
I let him know in the beginning that I wanted to be proactive with this illness, and he has helped me really try to get the upper hand. And five years after a drawn out diagnosis, we have!!
Sorry, back to Low Dose Naltrexone.
I do know that the IVIG I receive monthly is to give me the antibodies my immune system dose not produce.
Aren't there different types of Myasthenia, the type where your body does not produce antibodies, and the type where your body destroy's the antibodies needed?
So, I figure that if I have the type where I am not producing the antibody's and this drug can trick the immune system into activating, thereby producing antibodies it wasn't before, or just a general feeling of wellness, no more bodyaches, a return of strenght or perseived return of strength, it is worth bringing it to my doctor.
I am skeptical when it comes to messing with brain chemistry, but that's what doctors are for.
The problem with Naltrexone and studies is that the Patent has run out and there is no money in it for the drug companies to do research.
http://www.lowdosenaltrexone.org/
An info site. thanks for your reply, Tara

From what I have read MG isnt from a weak immune system but one that has the mistaken impression that our muscles are bad. As a result of this neurological mistake our immune system attakes the nerve endings that allow muscle response, the result of hat immmune system attack on our muscles is weakness to failure.
This would mean that our immune system is not weak, but in fact strong, although it is severely misguided. Any meds to make it stronger might allow it to succeed in totally destroying these nerve endings and making the weakness permanent and irreversable.
Just a thought

Thanks for the reply, actually from what I understand the attack is on the nuerotransmitters that pass between the muscle fiber junctions.
So, in essence the chemical that transfers the electrical impulse from one end of the muscle fibre to the other end is attacked and destroyed.
This is the antibody we lack, and in the beginning this is how the acethycholine reading shows, in our blood work, we have Myasthenia. Some Myasthenics never have this reading.
Now the thing that I wonder is that since this Antibody, that the the muscles use to contract, when our brain says contract is thought to be an enemy, does our body learn and just stop producing it? Or are some of those who have Myathenia and were never Positive on their test just stop producing it at some point and more likely to respond to a drug like Low Dose Naltrexone?
The clinical function of Low Dose Naltrexone is to convince the immune system to be full, healty, and restored to full production of any deficient immunological response. Hence the promise of its healing for the second type of Myasthenia.

I have not heard of naltrexone however, I am on cellcept at the moment and it seems to be all right. I really am not interested in taking the prednisone if I don't have to. Too many negative side affects but I WILL take it if I have to. 'Been off the prednisone since July and ache all over. I hope it will stop soon. Between the illness and treatment, I am exhausted.

Auma

Hello Tarala, I am looking into this drug now. I have a consult with one of the top MD's in the country at Johns Hopkins who is in the field of MG. You can read my story on my bio. I also flew out to Houston Texas to have a Thymectomy done roboticly. Here is the link check it out. That is me http://www.houstoncardiacsurgery.com/Myasthenia_Gravis.html. I like your attitude!!

I am a "newbie", diagnosed in Jan. 2010, thymectomy April, 2010. Proton radiation for thymoma, July-Sept 2010.
I have looked at IDN in the past and didn't put anymore thought into it for the simple reason that I didn't think I could get my neuro on board to prescribe it.
Low and behold, I went to my gynocologist who is a holistic Dr.( who is a firm believer in bio-identical hormones, supplements andpreventative medicines) for supplement advice.
The first thing he brought up was LDN! He is a firm believer in it to "cool down" the immune system. He uses LDN for breast cancer survivors and MS patients. He says he has not a recurrence of breast cancer in any of his patients, about 80 percent success in slowed progression of MS and I am his first MG. I am starting on a low dose just to calm my immune system. Will let you know how is goes.
sherry from texas

Tara, I'm interested to know if you had any luck, I'm in the LA area and my neurologist wouldn't even look into LDN for me. I need a new Dr. who is open to this. Thanks -SP

weakness is caused by circulating antibodies that block acetylcholine receptors at the post-synaptic neuromuscular junction, inhibiting the stimulative effect of the neurotransmitter acetylcholine....see more here: (plenty of info out on the net of course)

I don't know about two kinds other than congenital and negative, or MUSK

http://en.wikipedia.org/wiki/Myasthenia_gravis

I'm going to try the LDN I think - I live in Canada and naturopaths can now prescribe medications (a long-fought battle... though they still can't order labs tests to be covered by our health care system - go figure). Anyhow, I've talked it over with my naturopath and she's willing to prescribe it for me.

I had asked my nuero for a low dose of naltrexone, he refuse to give it to me, said the risks are too high and my MG is too mild

Before I knew I had MG, I already had a myriad of other autoimmunes. I asked my doctor about LDN. She actually was willing to prescribe it (I have been so frustrating for her) but I was never able to find a pharmacy in the area that would formulate it.

Good luck with the naltrexone. Seems like the "high risk" neuro had not done her homework, IMHO. The primary side effects are insomnia and nightmares (which resolve in a few weeks). It has kept me from taking mestinon for more than a year now, and I love, love, love it. I ordered a copy of "The Promise of Low Dose Naltrexone" for my internist, and he's fascinated with its potential for Crohn's disease, MG, and several other auto. illnesses. I know one cancer researcher here in Nashville has added it as an option to some of his terminally-ill patients.

It seems to be possible, but never really read thoroughly about it.

Interesting. I want to know more. Still....It is thus far an "internet sensation":

"Basic science research has shown that opioid receptors may have other uses in the body than just for modulating pain, such as increasing the production of the body's natural endorphins and also regulating cell proliferation in certain cells such as T and B cells and tumour cells (refs available), and it is on these bases that supporters of LDN have chosen it as a treatment for selected diseases. Advocates have claimed that this increased endorphin production can help with pain, spasticity, fatigue, relapse rate and other symptoms.These claims, however, are not as of yet supported by significant clinical research"

http://en.wikipedia.org/wiki/Low_dose_naltrexone

"LDN is not covered by insurance and therefore any expenses for its use should be expected to be paid for out of pocket"

http://www.va.gov/MS/articles/Spotlight_on_Low_Dose_Naltrexone_LDN.asp

Does anyone have any updates,recent experiences to share? I'm thinking about it and starting my research.. Thanks!