Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Not only do the antibodies block the communications, but they attack and destroy the muscle receptors. Caught early, muscle receptors will grow back if the attack stops, however, there can be permanent destruction with no growth back.
Since there is no way to stop the immune system from making a single bad antibody, treatment is to bring the whole immune system down to solve the single bad antibody problem (this is the treatment for most autoimmune diseases).
Obviously, anything that "enhances" the immune system is doing the opposite of what is needed in MG.
The other treatments:
PLEX--is a machine to clean out antibodies in general that hopefully include the bad ones.
IVIG--dumping in the combined and concentrated antibodies of 1000s of other folks from blood donation separation to flood our own immune system with so many antibodies that our bad ones are sort of lost in the mix while at the same time providing us with extra antibodies that, if we are on prednisone or other immune system depressant, we are likely missing--so the foreign ones could be helpful to fight off other disease.
Mestinon makes the communication link that we do have better by allowing the chemical transmittor molecule to hang around a little longer and thus be "reusable." It has side effects, but is about the mildest drug that works for daily improved functionality.
The danger with all this talk of immune system enhancement efforts are that we can do permanent damage to our receptors that they will not recover from--thus the high rate of death in the good old days from MG that has gone away mostly with the treatments that bring the immune system into overall lower functionality.
Face it folks, our immune system is attacking us vigorously and we have to look at it as our enemy to be beaten into submission and kept there for the rest of our lives. We don't have a weakened immune system, just a badly directed one. Our goal is to get a weakened one so the bad antibodies are not so prevalent.
I followed my doctor's direction:
Mestinon to get by each day at whatever level I needed
Prednisone to slow my immune system's production of the dangerous antibodies
and now, 4 months into the process am mostly MG symptom free and gradually decreasing my prednisone to allow my immune system to come gradually back until the symptoms return and then began the rest-of-my life balancing act of lowered immune system vs fighting off other diseases. If there were a targeted approach that actually did something like improve the good antibodies and decrease the bad ones, that would be fine--but nothing I have read gives any indication this is possible. I didn't choose to use IVIG or PLEX as prednisone, even with its dreary side effects, does work for the vast majority of MG folks.
Be careful--you can do irreversible damage if you let your immune system flood you with the MG antibodies long term. I have not read anywhere that MG comes from a lack of antibodies--just bad ones being produced too prolifically!!! It is what our immune system is doing, not what it is not doing that is the problem.
I think this discussion has a lot of mis-information, and I hope that I am not adding more ;-)
http://en.wikipedia.org/wiki/Low-dose_naltrexone
There have also been pseudoscientific claims about its efficacy in treating a wide range of diseases such as cancer and HIV, which are not supported by clinical trials.[4] The treatment has been widely promoted through websites run by organizations advocating its use.[5]
Pseudoscientific claims
In addition to the known scientific uses for low dose naltrexone, there are a number of pseudoscientific claims on various websites (such as "boosting" the immune system) about its use in a wide range of diseases such as cancer, HIV and lupus, amongst others[10]. According to Steven Novella, a noted skeptic with the New England Skeptical Society and professor from Yale University School of Medicine, these claims are not only unsupported by clinical research, but are also contradictory. They claim LDN is able to treat diseases of immune dysfunction (such as HIV) in addition to autoimmune diseases, where improving the immune system could make the autoimmune disease worse. Steven Novella also writes that claims of treating a wide range of diseases with different etiologies should be a red flag to be skeptical about these claims, which are likely to be "bogus treatment with claims that are literally too good to be true."[4]
As a rational person who tries to live by following rational and tested therapies, I wonder why folks are so eager to embrace untested and potentially dangerous directions.
From http://www.myasthenia.org/WhatisMG/FAQs.aspx we read that all MG is caused by antibodies--however of a few different types.
"A diagnosis can be confirmed in several ways, including the following:
Acetylcholine Receptor Antibody a blood test for the abnormal antibodies can be performed to see if they are present. Acetylcholine Receptor Antibody testing- Approximately 85% of MG patients have this antibody and, when detected with an elevated concentration the AChR antibody test is strongly indicative of MG.
Anti-MuSK Antibody testing a blood test for the remaining 15% of MG patients who have tested negative for the acetylcholine antibody. These patients have seronegative (SN) MG. About 40-70% of patients with SNMG test positive for the anti-MuSK antibody. The remaining patients have unidentified antibodies causing their MG."
So--antibodies created by our own immune system, attacking our own bodies is MG. That has to be turned off--not "enhanced." I think enhancing immune systems just sounds so wonderful, that it gets people confused that it is truly the opposite of what we must do -- dampening our immune system. If the genetic switch to turn of individual antibody type production is ever found out then we wouldn't have to depress the whole immune system just to get at the bad antibodies we produce. That will come sometime based on the recent new understanding of "switches" in our DNA.
In the meantime, bite the bullet and take the standard treatment if at all possible, knowing that prednisone (or other immunosuppresants) are not as bad letting our immune system continue it's attack and permanently destroying our muscle receptors -- and that will happen if you don't slow down the anti-body production.
Can you tell I am a former medical researcher from my hard stand here? Never understood why folks are so irrational in their medical choices and how willing and eager they are to embrace almost anything other than what scientific evidence shows!!!!
I havd been living with relapsing, generalized Myasthenia for 10 years, come this October, and I am in awe of anyone surviving a nuerological condition like these ones that long!
I also get the frustration we Myasthenics live with, and that we get it when we get it - we are the same in many ways, yet different. Along my medical journey I have met a few of us injured rare MG birds along the way who have urged caution, where maybe science would say forge ahead.
Immunosuppressives - not recommended for women, well at least for me. And in one tragic lady, it created a way worse condition than MG. What could be worse?!?
So, everything has a balance, a cost. No one right way.
I urge discussion, hence
The Question on this post
and my Thanks for your clarity.
Well wishes on your journey.