Myasthenia Gravis

  I am not a doctor – so I can’t help you with any medical advises. For these you will need to consult your doctor. But you will find (on the bottom of each page) medical articles on which I based my information. My advise is that after you read the information I presented – to print the references and have a discussion with your doctor.

  While I can’t help you medically, I am a certified Life Coach and Professional Engineer (PEng). So I can counsel and encourage you in taking the best decisions in your personal life.

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  This page it may look off from the rest of the theme of this site. But I really believe that this disease – in my case – was a culmination of the stresses I put unknowingly myself and my body through. And again if I can help anyone to not get to this point I will feel happy that this site achieved the goal I set when I start it. Also, if you got to this point I want to help you get in remission as I could get too.

  So, what is myasthenia gravis?

  According with Wikipedia that cites a lot of medical references:

Myasthenia gravis (MG) is a long term neuromuscular disease that leads to varying degrees of muscle weakness. The most commonly affected muscles are those of the eyes, face, and swallowing. It can result in double vision, drooping eyelids, trouble talking, and trouble walking. Onset can be sudden. Those affected often have a large thymus gland or develop a thymoma.

Myasthenia gravis is an autoimmune disease which results from antibodies that block acetylcholine receptors at the junction between the nerve and muscle. This prevents nerve impulses from triggering muscle contractions. Rarely an inherited genetic defect in the neuromuscular junction results in a similar condition known as congenital myasthenia. Babies of mothers with myasthenia may have symptoms during their first few months of life, known as neonatal myasthenia. Diagnosis can be supported by blood tests for specific antibodies, the edrophonium test, or nerve conduction studies.

Myasthenia gravis is generally treated with medications known as acetylcholinesterase inhibitors such as neostigmine and pyridostigmine. Immunosuppressants, such as prednisone or azathioprine, may also be used. The surgical removal of the thymus gland may improve symptoms in certain cases. Plasmapheresis and high dose intravenous immunoglobulin may be used during sudden flares of the condition. If the breathing muscles become significantly weak, mechanical ventilation may be required.

Myasthenia gravis affects 50 to 200 per million people. It is newly diagnosed in 3 to 30 per million people each year. Diagnosis is becoming more common due to increased awareness.[6] It most commonly occurs in women under the age of 40 and in men over the age of 60. It is uncommon in children.

  When I was diagnosed I was put on the typical medication – mestinon and prednisone. Two years later I was to a point of going in long term disability. Was harder and harder to do anything. I really hated to be only 39 years old and feel like my life was a sentence. So, I decided to find a way to beat it. And I start a slow and long research to find another solution. I saw a lot of crap (sorry for the word, but is no better word to call the claims from people trying to make money from people suffering) from all kind of so called naturopaths (I believe some may be good, but the internet is full of bad ones). From colloidal silver to snake oil. Didn’t read more than two lines. Didn’t have time and patience for such claims. It took a lot of time but in the end I found what I was looking for. Found it on a myasthenia gravis forum.

  Found a doctor in Venezuela. A doctor that himself struggled with ocular myasthenia and decided against the classical treatment. He enrolled in a road to beat myasthenia gravis and help other patience to beat it too. His name is Dr. Fuad Lechin, MD, PhD.

  In his website under “Publications&References” number 174 has a attachment that anyone can download to present to their personal doctor. It’s a publication in the “Journal of Medication” from 2000. In this publication is a treatment regimen that sent a lot of people in remission and the rest lowered their Mestinon dosages significantly. And that is not what he claims but what a lot of people that follow the treatment testify on a lot of patient forums.

  I took this publication to both my family doctor and my neurologist. As I was not doing good at all they both agree to allow me to follow the treatment for few months before going to a more aggressive classical treatment. Of course they agreed to prescribe the medications in the publication as they thought that can’t do any harm. To my surprise (I must admit I was a bit skeptical in the start, even with so many patients testifying otherwise) three months later I was feeling better. About 8 months later I was able to lower my Mestinon. And I continue to lower it – until about 3 years later I was in remission. No need for Mestinon. No need for the treatment regiment either.

  For a full disclosure I need to say that I am seronegative. That means that my acetylcholine test came negative. I was diagnosed by electromyography testing.

  But as I said I found a lot of patients testifying that they went on remission. And they were seropositive.

  If you are like me, when nothing seems to help, I think will be a good idea to give it a try.

  My family doctor even contacted Dr. Lechin directly and he received a reply that him and his team are ready to help me even more if I can make it to Venezuela. I didn’t have the financial possibility but even using the medications and dosages mentioned in the publication sent me in remission.

  I truly believe that if you want your health back is worth to pursue treatments that other doctors already tried successfully anywhere around the globe. Its your health in play. You don’t have another life for the western medicine to catch up with these researches and treatments. Also, don’t forget that big pharma has a big saying in our medicine. Treatments in other countries may be ahead as they don’t depend in big pharma researches.

Possible Alternatives and Supportive Solutions

  Struggling with this disease I wanted not only to get in remission but also to have as much as possible my energy and stamina back. Also I wanted to find a way to remain in remission as long as no serious major stresses will affect me. Plus I wanted to avoid some of side effects of the medication. So, continuing searching through medical researches I found information about two alternatives and/or supportive solutions.

Huperzine A

  Huperzine A is starting to be used as an alternative to Mestinon. While I couldn’t find a web link to the write up of the researches, here is WebMD Huperzine A information. WebMD is a US network displaying medical information. According with them:

WebMD verifies the qualifications of all medical professionals on the site; including health professionals, experts, editorial professionals and contributors with a specialty license. Health Professionals, including those who write, review and edit our editorial content as well as Community Experts, undergo credential verification by a third party.
Most of us at WebMD Health have spent our entire careers dedicated to helping people find the health and medical information, support, and services they need — even before there was an Internet! We are dedicated to providing quality health information and to upholding the integrity of our editorial process.

  This is still a supplement that you can buy at the health store. But it is already included in prescription drugs combinations for the treatment of Alzheimer.

  It’s mechanism of action is following exactly the one of the Mestinon. But it also offers extra advantages that Mestinon doesn’t. Beside helping with Alzheimer as I mentioned above. It is also protective against agents that damage the nerves such as nerve gases. Hopefully western medical community will publish officially more information and even develop more research.

  By now if you think about the dosage – here is what Medscape (another US medical network supported by physicians) suggests Huperzine A.

   So what is my own experience with it. I start taking it after almost stabilizing following the treatment of Dr. Lechin (see above). By this time I was feeling I was very close to remission and my doctors were considering me stable and not monitoring my situation anymore. I didn’t use the daily injection as Medscape states. I had quite an upscale battle to get my doctors to agree with the treatment of the Dr. Lechin. So, I didn’t want to get through another battle. So, I start at 200mcg twice daily. Switching from 3x60mg Mestinon and 1x180mg Slow Release Mestinon. I felt a bit of the change (a touch weaker) the first two days. But the third day I was feeling even better than on Mestinon. I continue to use it as the Mestinon – increasing and decresing depending on how I was feeling. Increase a bit the dosage when close to periods (as I always felt MG waiting around when close to them – even in remission). Decrease to a maintenance dosage in the rest of the time. I found my maintenance dosage to be only 50 mcg twice daily. And even if I missed it sometimes – didn’t feel it. It’s easy to miss a dosage when you feel ok!!!

  Side effects of Huperzine A are exactly the same as Mestinon. But I find them to be much more mild then the ones from Mestinon.

Ephedrine

  Before talking about ephedrine and its benefits as add-on therapy, I will not be honest if I will not mention certain facts about it upfront:

  • It’s notorious for increasing blood pressure. So, for people with cardiac conditions it needs to be taken only under doctor supervision.
  • It is partially banned in US but legal in Canada. In US can be found in over the counter medication like Bronkaid and Primatene. The reason of banning in US is because it was linked with few deaths and some side effects by overdose. Taking a look at these cases is obvious that ephedrine has the same danger as an overdose on alcohol or coffee. And I agree with people from US saying that banning ephedrine is an overreaction (you can judge yourself by checking reference 6 – under “Legality” is also a link to FDA and what they based their decision on). Anything (even salt or bananas) can become dangerous when taken in excess.

  Now, let’s turn to the facts about its benefits in myastenia gravis.

  According to researches ephedrine showed good results in muscle weakness and strength, effects on facial weakness were less pronounced for congenital myasthenia gravis due to DOK7 mutation (genetic mutation). Also, the researches falls short in understanding the mechanism of action – they state that ephedrine doesn’t seem to affect the transmission between nerve and muscles. But still the positive effects are confirmed by the pathological results.

  Ok, you may say. These researches are referring only to the people with a genetic mutation. What this has to do with any other myasthenia gravis sufferer?

  There are other benefits of ephedrine (see reference 6 for more information – on the bottom of that page it is a full set of references on which the summary is based):

  • Ephedrine prevents the breakdown of muscle tissue to a small degree. Ephedrine, as a beta-adrenergic agonist, can preserve muscle mass by reducing nitrogen excretion (and titrating nitrogen balance towards a positive state). Why this is important for someone with Myasthenia gravis? As you get weaker you start losing muscle mass. Muscle are governed by the law of “use it or lose it”. The less you use them the more you lose them.
  • Ephedrine appears to enhance endurance exercise performance which may merely be secondary to increased free fatty acid levels in serum and possibly a reduced rate of perceived exertion. Myasthenics can’t be described as endurance athletes. But going through a day while fighting myasthenia is an endurance exercise. Ephedrine can help with both endurance and exertion during daily activities for myasthenics.

  Next benefits are more generic. But by helping general health are improving the stress responses that a myasthenic needs to avoid in general.

  • Many of the human studies (to be discussed) noted slight increases in blood pressure ranging from 5-23mmhg systolic with no influence on diastolic. Over a long period of time (8-12 weeks) ephedrine is associated with reduced blood pressure… Sometimes blood pressure is not significantly affected at all chronically, however. In regards to persons with hypertension who may still experience the acute rise in blood pressure, treatment with ephedrine may be problematic acutely but has been argued, over time, to be beneficial secondary to reduction in weight. With a controlled dose of ephedrine, it does not seem to change heart rate in and of itself. Variations in heart rate are typically causative of excessive adrenaline levels when pairing ephedrine with an adrenaline increasing agent such as Caffeine or from anxiety.
  • This benefit affects more women dealing with estrogen dominance. Ephedrine, at 0.5mg/kg daily, exerts an anti-estrogenic effect in mice. Its tru the study (see reference 7) is done on mice. But from my own experience – I always struggle with tender breasts and other estrogen related symptoms. From when I start using ephedrine this symptoms while not totally disappearing are much much much less noticeable.

  So, my advise is to have a talk with your doctor and give it a try.

Probiotics

  I will admit from the start that I can’t testify on behalf of this. While I use the probiotics before didn’t feel a difference. I realized in my research for my digestive problems that a existing bacterial overgrowth impaired the benefits of using probiotics.

  It is next on my list to give it a try but at this point I am still using prebotics (inulin) to balance nicely my intestinal flora.

  Anyway, there is a study (see reference 8) that seems to show improvement in development of Mysthenia Gravis by taking “IRT5 probiotics” (Lactobacillus acidophilus, Lactobacillus casei, Lactobacillus reuteri, Bifidobacterium bifidum, and Streptococcus thermophilus). IRT5 probiotics seem to modulate antibody mediated autoimmune diseases including myasthenia gravis.

  If you read already through my IBS, SIBO pages and really insisted on the Lectins, the Evis Protein there will give you an idea how inflammation can affect your body. Even more under the effects of Lectins in the body there is enough research to suggest a close link between reducing Lectins, improving gut health and avoiding or improving auto-immune diseases.


References:
1. Schara U, Barisic N, Deschauer M, Lindberg C, Straub V, Strigl-Pill N, Wendt M, Abicht A, Müller JS, Lochmüller H. 2009 Dec Ephedrine therapy in eight patients with congenital myasthenic syndrome due to DOK7 mutations
2. D. Lashley, MRCP, J. Palace, MD, S. Jayawant, MD, S. Robb, MD, and D. Beeson, PhD 2010 May 11 Ephedrine treatment in congenital myasthenic syndrome due to mutations in DOK7
3. Andrew G. Engel Department of Neurology, Mayo Clinic, Rochester, Minnesota 55905 The Therapy of Congenital Myasthenic Syndromes
4. Cheng YS, Lu CZ, Ying ZL, Ni WY, Zhang CL, Sang GW. One hundred and twenty-eight cases of myasthenia gravis treated with huperzine A. New Drugs Clin Remedies 1986 (couldn’t find a web link to the study)
5. Xia Q, Liu QC. Clinical study of huperzine A on the treatment of myasthenia gravis. Proc J Med Pharm 2002 (couldn’t find a web link to the study)
6. Molenaar PC1, Biewenga JE, Van Kempen GT, De Priester JA 1993 Apr Effect of ephedrine on muscle weakness in a model of myasthenia gravis in rats.
6. Examine.com Ephedrine Summary All Essential Benefits/Effects/Facts & Information
7. Arbo MD, Franco MT, Larentis ER, Garcia SC, Sebben VC, Leal MB, Dallegrave E, Limberger RP 2009 Jan Screening for in vivo (anti)estrogenic activity of ephedrine and p-synephrine and their natural sources Ephedra sinica Stapf. (Ephedraceae) and Citrus aurantium L. (Rutaceae) in rats.
8. Chang-Suk Chae, Ho-Keun Kwon, Ji-Sun Hwang, Jung-Eun Kim, and Sin-Hyeog Im 2012 Prophylactic Effect of Probiotics on the Development of Experimental Autoimmune Myasthenia Gravis IRT5 probiotics (the IRT5 probiotics are Lactobacillus acidophilus, Lactobacillus casei, Lactobacillus reuteri, Bifidobacterium bifidum, and Streptococcus thermophilus)