Sunday, September 20, 2009

In 1992, while visiting China, I developed a severe upper respiratory infection. Several weeks later, I woke up one morning with double vision and ptosis of my right eyelid. My physician sent me to a neurologist who performed a tensilon test and determined that I had Myasthenia Gravis. I was told that it was incurable, that I’d have to learn to live with it, and that I’d be on heavy duty medication for the rest of my life. I had a thymectomy which didn’t help at all. I was put on prednisone and Mestinon, There were times when I was so weak that I couldn’t talk, swallow, hold my head up or lift anything.

Over the next several years I was put on Imuran and later Cytoxin. I experienced several crises culminating in a 5 day stay in ICU on plasmapharesis. At that point, I realized that I needed to take matters into my own hands, that the doctors could do only so much and that the rest was up to me. I had heard many times that the body is supposed to be able to heal itself. So I started researching what I needed to do to accomplish this. After much reading and listening to a clinical nutritionist speak, I decided to change my diet. I thought I was eating healthy by not eating red meat. But that wasn’t enough. I became a vegetarian 3 years ago and then a vegan 2 years ago. In addition, I intensified my practice of tai chi and qigong (two ancient Chinese forms of exercise that promote healing through the circulation of “chi” – life force energy – throughout the body. I also switched to liquid vitamins and minerals which are more absorbable than tablets and started practicing meditation.

About three years ago, I realized I was basically symptom-free on 10 mg of prednisone every other day. So I started reducing my prednisone, with my doctor’s guidance, by 1 mg every few months. It took over a year but on May 23, 2009 I was officially off of all medication and have been drug-free and symptom free for 4 months. My neurologist officially dismissed me from his care with his blessing when I saw him last May.

I started this blog because if I could improve my condition, other myasthenics can improve theirs also. I believe that it is crucial to take control of one's own health and to explore alternative approaches to wellness. Doctors don't always have all the right answers. 

I want to help in any way possible.  If you, or someone you know has MG, let's connect and share.




40 comments:

  1. Hello Fran,

    My name is Michael Liston and I was diagnosed with MG in May of 2008. I've been through a lot of similar events like what has happened to you. I almost died in my girlfriend's arms while I went into full blown crisis. I spent about a month in the ICU intibated and another month recovering some more. Before I went into the crisis, I also had a thymectomy (fully invasive thymectomy). I'm at about the year and a half mark of this horrible disorder. I've been through the whole gambit of what modern medicine can throw at this, prednisone, plasmapherisis, IVIG, thymectomy, immuran, mestinon, etc. Oh yeah, for the past six years I've been serving in the U.S. Marine Corps, so the government has been helpful with the med. bills (I'll probably be medically discharged soon). Like all myasthynics, I have my good days and my bad ones. I've experienced not being able to walk, speak, lift my head up off my pillow, choked on water and my own saliva, the list goes on.
    But what struck me about what you've written so far is your holistic approach. I too have been studying Qigong and Baguazhang (Taiji's sister art). I've seen much improvement but it's hard to have the same study regimen my teacher requires (wake up at 5am to drive to the park and do standing meditation from 6am to 7am and qigong/baguazhang from 7am to 830am to 9am). I'd like to connect with you and hear about your experience with changing your diet. I hope to hear from you soon. your story makes me very hopeful.
    Mike Liston

    ReplyDelete
    Replies



    1. I was diagnosed with Myasthenia Gravis in 2014, 2 years after they removed a tumor on my thymus. It's been an okay road. Had one flare which put me in the hospital 4 years ago and this previous year I have been in and out of the hospital trying to see which treatment can get me back feeling 100% again. Pyridostigmine bromide just makes me nauseous all day and didn't help my droopy eye or swallowing so I need to try something else which was natural herbs recommendation from multivitamincare org This herbal treatment has successfully cure my MG and am 100% free ,I completed the herbal treatment program last year December and am very delighted i came across their website.it starts in the eyes and face then bulgar muscles , without treatment or the proper dosages of treatment it goes on to my limbs and then neck and breathing muscles but I can happily say that am free from MG after taking my chances to try natural herbs ,my neurologist was surprise after my result of being totally cured with herbal cure from the org.







































































































      Delete
    2. How can I access the herbs I am really looking forward to 100 percent healing

      Delete
  2. Hi Mike, thank you for writing. I don't think I could've adhered to your teacher's regimen either. First of all, it's really important to get your rest. But I do think it's really important to practice qigong daily. What I try to do is practice 15-30 minutes each morning and again before dinner. But I really believe that what pushed me into remission was the change I made in my diet. I know it sounds drastic but going vegan felt like the right solution and it seems to have worked.

    Several years ago I saw a neurologist who put me on a vegan diet and started reducing my prednisone while I was still have symptoms. The result was not good. I grew progressively weaker until I wound up in ICU. I switched doctors and he explained that it was wrong to start reducing the medication until I was symptom free. I went back to my old way of eating and never got to the point where I was symptom-free. It wasn't until I cut out all animal products from my diet that I got to the point where I could start reducing my med.

    I suggest you read The China Study and Diet for a New America. Unfortunately our food supply is filled with so many chemicals that are harmful to the immune system. Animals are fed harmful chemicals to make them bigger faster to bring in more money and they are fed loads of antibiotics to keep them from dying too soon. Also, they live under great stress. When we eat them, we ingest the chemicals and antibiotics and inherit the stress. All this creates havoc for our immune systems. It only made good sense to change what I was eating to change how I was feeling.

    I really do believe that our bodies are supposed to be able to heal themselves. We just have to make sure that we're not sabotoging the effort!

    Please keep in touch and let me know how you are doing.

    ReplyDelete
  3. Fran,

    Thanks for all the great knowledge! I will be looking into a good way to ease into a vegetarian / vegan diet. When you talk about cutting out animal products you're talking about meats and everything else (milk, butter)? Does going vegetarian suffice? If it takes going vegan to get well, well then so be it.

    I too also believe our bodies are suppose to heal themselves. Are the books that you suggest available at major book stores? I will definitely keep in touch and let you know how I'm progressing.

    Cheers,
    Mike

    ReplyDelete
  4. I found the best place to buy the books is on Amazon. They cost less and you can get free shipping with $25 purchase.

    After doing a lot of research, I came to the conclusion that it was necessary to cut out all dairy products and eggs. Again, it's the animal protein that affects the immune system. Also, it's unbelievable but, contrary to what the Dairy Council would want us to think, the calcium in dairy products actually makes our bones weaker. Taking prednisone all those years had made my bones weaker as it was and I didn't want the dairy products to make them worse. We get plenty of calcium from vegetables, whole grains etc.

    Sorry if I sound like I'm preaching, but I'm really passionate about the affects of diet on autoimmune disease. I would imagine that there are lots of vegetarian restaurants in San Francisco. I know there are in southern CA where my son lives. Also, if you have Trader Joe's near you, they have lots of veg choices.

    BTW, another thing I recently heard is that there is something in the new swine flu vaccine that can cause Epstein-Barre disease which is very much like MG. Scary! My doctor feels strongly that the vaccine should not be taken. Instead he has advocated taking 4,000 IU of vitamin D3 a day and 3,000 mg of vitamin C. It would be horrible if a lot of people get an autoimmune disease just be trying to avoid the swine flu.

    I'd love to hear your thoughts after reading the books.

    Namaste,
    Fran

    ReplyDelete
  5. Fran,

    Thanks for creating this blog. I am 40 years old, and have been suffereing from Myasthenia for over 6 years. I too have tried all of the recommended treatments - thymectomy, IVIG, Prednisone, Mestinon, Cellcept, Immuran. I am now on a new diet and supplement program which is designed to enhance supplements, and rid my body of toxins. Truth is, I'm worse than ever, and continue to lose function of my arms. Some days, my arms are barely functional at all, and I can hardly dress or undress myself. Pretty tough to accept for someone who has always led an active lifestyle.

    Frankly, I am super frustrated that there seems to be very little known about this disease and the traditional treatments appear to have a very low success rate. Further, there are no support groups near me (LA area), so I feel like I am going at this alone and that not even those closest to me has any concept how it feels to be trapped inside ones body, unable to make it function the way it should. I have said that it doesn't take a month, a week, or even a day. If someone could expereince this for jut 60 seconds, they would then understand.

    It is just nice to know that there are others out there who suffer from the same thing, and that there is finally someplace to try and connect.

    I am interested in the steps you ahve taken. do you really think meditation has helped? And how so?

    ReplyDelete
  6. Evang,
    If you are interested in support, the MG Clinic at Long Beach Memorial Medical Center sponsored by the MG Foundation of California has just started offeromg 1:1 coaching support during their monthly clinics (second Frday of every month). Also, we are looking at staring a LA/Southbay Support Group. The phone number for an appointment is 562-595-4827 and ask for Nidia to make an appointment with Cindy. The services are free of charge.

    Also, sometimes if you start a detox regimen and it is not done in a slow manner, especially for someone with MG, you may be releasing too many toxins for your system to handle - thus the regression of your symptoms.

    Cindy

    ReplyDelete
  7. Thank you for creating space that people could talk about alternate ways to deal with MG. It has been a struggle to find anything on the internet about MG that is not discouraging or the same list of drugs to use that are not helpful.

    I too have tried the whole gamut of medications for MG and have received the thymectomy.

    My symptoms continue to fluctuate. I find it difficult to live life. I can not get a job because in interviews my MG come out because I am nervous and I have a difficult time talking. I find it impossible to make new friends or commit to activities with people because I never know how I will feel. I am extremely frustrated with my disease. I feel that it keeps me captive from fun and negative any positive traits that I have. My fiance and my family are very supportive so I do feel lucky in those regards.

    I to have found that what I eat has a huge effect on how I feel. I feel best when I am fasting. But that is not a sustainable answer. I not eat wheat, dairy, eggs or most grains because I instantly react when I eat those items. I have tried being a raw organic eating vegan but have found it to be too extreme for my body and I get sicker. I think that my body needs some cooked food and meat(I only eat organic meat given no antibiotic).

    I have gone to a homeopathic doctor for three years but still do not feel that great. I have just started to learn about about ayurvedic treatments and abhyanga(daily message with oil)both of these things seem helpful.

    I believe in full healing but it has been a long hard road. I have never tried qugong but it sounds like it could be helpful.

    I was wondering if there is anything else that you would recommend. I take mestinon, sometimes it works and other times it make things worst. I refuse to take prednisone. It makes me balloon up, symptoms are not better and I become violently angry.

    Evang I live in Los Angeles(Eaglerock). Have you found support yet?

    Lindsay

    Oh I also travel to China and many other countries before I got sick. DO you think there is a connection? I have always thought that it was the vaccinations that I took before the trip that gave me an autoimmune disease.

    ReplyDelete
  8. Also can't eat- beans, lentils, avacado or garlic

    ReplyDelete
  9. Hi everyone , i am shaymaa from egypt 20 years old,i am amedical student in 4th year in the faculty of medicine ,i was diagnosed with Myasthenia Gravis in december 2008 with sudden beginning and i was never complaining from any muscular disease .after diagnosis i began taking Mestinon as anticholinesterase and i have done 4 sessions of plasma ...pheresis . i did C.T on chest and it was normal but my doctor advised me to do thymectomy although i have no thymoma .Really i am so happy to find these groups which support us and being amember in them and getting friends with similar conditions and to exchange expriences
    Thymectomy has been done
    really doctors here in egypt are great doctors they advised me to do surgery even it is amajor surgery and C.T scan was normal but after removal and performing histopathology it showed evident hyperplasia
    doctors gave me special care and helped me alot
    thanks God
    thanks doctors

    I'm sorry for Talking too much I hope that I wasn't boring I hope to forgive me if my language is not good I hope from God cure for all‎

    ReplyDelete
  10. Hi Lindsay,
    I was diagnosed with Ocular MG in Dec 2009. I have had no other symptoms than double vision.
    In short ,I believe a combination of a vegan diet and herbal prescriptions from a doctor here in Los angeles have allowed me to stop taking both Mestinon,Pyridostigmine and prednizone.
    I have very limited double vision first thing in the morning and sometimes late at night. The improvement has been remarkable. My neurologist had dismissed my changing my diet and taking the herbs as ineffective ,but I believe they are the answer.
    My Herbalist doctor is Dr. Matt Van Benschoten. Do a google search for him to find his website.
    All the best,Paul

    ReplyDelete
  11. I was diagnosed with MG in 2002 and I had no idea up until now how much nutrition played a role in my struggle with the disease. I am inspired to hear Frans story and it gives to the courage to change my lifestyle and fight this disease. I had a thymectomy in 2003 and have been put on various medictions without any success. My body did not react well to the imuran or the cellcept. I have been consistently on predisone for about 8 years and I know if I continue to take them the side effects will catch up to me. I have given up all forms of refined sugar, dairy, meats, (execept fresh fish), and processed foods. I have only been eating this way for a about a month now and I can see drastic change in my energy level. I have faith that if I contiue with taking care of my body it will heal itself.

    I just want to thank you all for posting and inspiring me to take control of my life.

    ReplyDelete
  12. Lindsay,

    I am curous to know what effect the beans and lentils had on your condition? I just recently ate a large quantiy of beans and lentils and it caused me to have strange uncomfortable feeling in my stomach.

    I would love to hear your feedback. Thanks.

    ReplyDelete
  13. Dear Fran,

    Thank you so much for sharing your story. I'm so encouraged to see that people are using their intuition, educating and empowering themselves. My boyfriend has MG and had a thymectomy. I have been trying to get him to change his diet but he is a corporate executive in a high stress job and it has been a huge challenge. Plus he needs proof of everything, and some things you learn by the doing.

    That said, I am a Naturopathic Doctor, focusing on biophysics nutrition, an Ayurvedic Practitioner and a Qi Gong Instructor. I practice as a Holistic Health Educator and Lifestyle Coach. Fran, your regimen is almost EXACTLY what I have been trying to get my boyfriend to do. Thank you for sharing the results because this is exactly what I need to get him motivated to change his life in a major way. He is a wonderful man, and I want him happy and healthy.

    For those of you who struggle with MG please know that if you give your body what it needs, your body will heal itself. That is a fact. I'm a Naturopathic Doctor because I had Chronic Obstructive Pulmonary Disease for 25 years, and the doctors could do nothing for me. The rest of my life is dedicated to guiding people on their paths to Radiant Health.

    Be encouraged everyone. Educate and empower yourself. No drug will ever heal you. It can only mask symptoms. Give your body what it needs: healthy emotions, nutrition, bodywork and exercise and your body will heal itself every time.

    ReplyDelete
  14. I would like to ask a question, I have not yet been diagnosed as MG, doctor at Stanford thinks I have either MG or Graves Disease. We are waiting for test results for the Graves. I tested negative for the MG but the doctor is not convinced. I took Mestinon for 2 weeks and still had the double vision.
    How long do I have before greater symptoms start?

    ReplyDelete
  15. JW, MG is called the "Snowflake Disease" because no two cases are the same. Double vision occurs in many people who do not have MG. Maybe all you need is a prism in your glasses. Hopefully your symptoms will never progress.

    ReplyDelete
  16. Fran, I am a physical therapist assistant that would like to use tai chi for my patients. Can you describe or send to me the tai chi routine you use for your condition? tommieslade@gmail.com

    ReplyDelete
  17. Hello and thank you for posting on my Myasthenia Gravis blog. I suggest rather teaching tai chi to your MG patients, Qigong (energy exercise) which has the same innate value, is much easier to learn. Tai chi entails learning a sequential set of exercises...this takes a lot of time and a good memory. With Qigong there is no memorization of a set routine. Instead the patients would simply follow your lead. Benefits can come faster and you will discover that patients will enjoy its simplicity.

    Go to the National Qigong Asso. website at www.nqa.org and order their "Discovering Qigong" DVD for $10. It is a wonderful video and includes The Five Treasures, which would be an excellent set for you to teach your patients.

    Let me know if this helps.
    Fran

    ReplyDelete
  18. My father In law has been diagnosed MG. Ptosis and Double vision lead to this diagnosis. Correlating Lifestyle and the Mechanism of the disease that is espoused by Medical Journals, I quite believe that Fran is dead right about managing this. Meditation, Pranayama, Detoxification and improved stress management seem to be the key to dealing with this from all the experiences I have read about. Thanks for posting guys. and Oh! by the way I work as a consultant to Pharma companies.

    ReplyDelete
  19. Hi Fran, I have struggled with MG for 10 years. I am almost 28 years old now. I have tried most Western treatment options but to no avail. Could you help guide me more in terms of diet? What do you typically eat for breakfast, lunch, and dinner? Thanks! -Chrissy

    ReplyDelete
  20. Hello
    I'm writing from Italy and I'm also sick of MG from 3 years, I only take mestinon!
    which diet you follow? Ehret? Or just vegan?
    You took all the flour?

    thank you very much!

    ReplyDelete
  21. hi i was just diagnosed last week with MG. I am now trying to find every avenue to lead me to overcoming this. Please, any help that you can give regarding diet will be helpful!

    ReplyDelete
  22. Hi,
    I was diagnose with ocular MG in December 2012. I read The China Study because it had information about autoimmune disorders. I changed to a strict vegan diet in January 2013 and I was taking mestion. In August I was pretty much symptom free. I never thought the mestion gave me any relief of symptoms. The vegan diet is the answer

    ReplyDelete
  23. This comment has been removed by the author.

    ReplyDelete
  24. Hi Fran,
    Do you drink alcohol? How does it effect MG? What do you use for protein?

    ReplyDelete
  25. I found Huperzine A. I find it works better than Mestinon, but sometimes I run out before I realize it and boy do I suffer. I realize there are certain foods that work against me. All artificial stuff sends my nerves into a frenzy. The Mestinon doesn't work as well, but it does allow me to at least wipe myself with a towel and speak somewhat clear when I run out of Huperzine A.

    ReplyDelete
  26. Hi there everyone , I am new to all this and have recently be diagnosed with MG. I'm not on any medication as yet, as I'm waiting for a MRI scan to check my Thymus gland etc. I have symptoms which include, difficulty swallowing, talking ( slurred speech when tired) aching arms and hands and slightly blurred vision at times. My recent symptom is my face muscles, and my smile and expression is somewhat..... Not like me...... It is a scary journey for me. I am a busy mum with twin 7 year olds and it is hard trying to balance being a mum and also having a life with this disease . It would be so nice to connect with others who have been in my shoes. I live in Christchurch New Zealand , so our support is quite limited here. I'm very anxious about the Myasthenia Gravis Crisis, as it appears to be a life threatening episode of the condition. How do you know when it will strike? I am worried as I suffer from Asthma, so often my chest is tight and I am a little breathless at times. If I have a cold. We live rural, and often I'm home with my girls when my husband is working. Any advice would be most gratefully received, I'm just so worried. Thanks heaps. Michelle x

    ReplyDelete
  27. Natural Herbs Clinic provides Successful Myasthenia Gravis Natural Treatment without any side effects. Olive Oil, Coconut Oil, Pumpkin Seeds, Almond, Garlic are some of Successful resources for natural treatment of Myasthenia Gravis.

    ReplyDelete
  28. Myasthenia gravis can be treated with the help of herbal supplements which are safe to use with no symptom. Herbs provide Myasthenia Gravis Herbal Treatment to reverse diseased condition. It principally takes a shot at underlying driver of disease and manages with the symptoms with the help of herbs.

    http://www.herbs-solutions-by-nature.com/Myasthenia-Gravis.php

    ReplyDelete
  29. Hello Fran, can you please give me the name of the neurologist who recommended you the vegan diet? And if it's possible a mail o phone number to contact him

    ReplyDelete
  30. You can utilize Astragalus root extract to improve the optimal functioning of your immune system and area off fatigue. Due to this reason, it is a good herbal remedy for  Myasthenia Gravis Natural Treatment .

    ReplyDelete
  31. My husband was diagnosed with early onset Parkinson's disease at 68. His symptoms were shuffling of feet, slurred speech, low volume speech, degradation of hand writing, horrible driving skills, right arm held at 45 degree angle. Things were tough for me, I too was diagnosed of COPD but now we both finally free from these diseases with the help of total cure herbal foundation, He now walks properly and all symptoms has reversed. He had trouble with balance especially at night, getting into the shower and exiting it is difficult. Getting into bed is also another thing he finds impossible. We had to find a better solution for his condition which has really helped him a lot,The biggest helped we had was totalcureherbsfoundation. com They walked us through the proper steps, im highly recommending this herbal formula to anyone who needs help.

    ReplyDelete
  32. I had myasthenia gravis since 2015. I got medically discharged out of the Army, a job I loved well. My heart had 5 myasthenic crises, 3 being severe enough to be ventilated or require CPAP (continuous positive airway pressure) helmet. I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchase from totalcureherbsfoundation .com which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free ,to me the best to get rid of this condition is totalcureherbsfoundation com treatment because all medications I used never worked include mycophenolate (CellCept)

    ReplyDelete
  33.  I'm 59 years old and female. I was diagnosed a couple of years ago with COPD and I was beyond scared! My lung function test indicated 49% capacity. After having had flu a year ago, the shortness of breath, coughing and chest pains continued even after being treated with antibiotics. I've been smoking two packs a day for 36 years. Being born without a sternum caused my ribs to be curled in just one inch away from my spine, resulting to underdeveloped lungs. At age 34 I had surgery and it was fixed. Unfortunately my smoking just caused more damage to my already under developed lungs. The problem was having is that I enjoy smoking and don't want to give up! Have tried twice before and nearly went crazy and don't want to go through that again. I saw the fear in my husband and children's eyes when I told them about my condition then they start to find solution on their own to help my condition.I am an 59 now who was diagnose COPD emphysema which I know was from my years of smoking. I started smoking in school when smoking was socially acceptable. I remember when smoking was permitted in hospitals. It was not known then how dangerous cigarettes were for us, and it seemed everybody smoked but i was able to get rid of my COPD lung condition through the help of total cure herbal foundation my husband bought, totalcureherbsfoundation .c om has the right herbal formula to help you get rid and repair any lung conditions and cure you totally with their natural organic herbs,it class products at affordable prices because how awful it is with this lung dictions . I wish anybody who starts smoking at a young age would realize what will eventually happen to their bodies if they continue that vile habit throughout their life, certainly total cure herbs is the formula to get over Chronic Obstructive Pulmonary Disease.

    ReplyDelete
  34. Thank you Fran for your blog. Could you please clarify... in your post it states that you became a vegetarian and your symptoms disappeared at the same time about three years ago. So what was first?

    ReplyDelete
  35. My Myasthenia Gravis (MG) symptoms started at the age of 51, I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchased from multivitamincure. org which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free today,to me the best way to get rid of this condition is multivitamincure. org herbal recommendation because all medications I used never worked include mycophenolate (CellCept).

    ReplyDelete
  36. My Myasthenia Gravis (MG) symptoms started at the age of 51, I have had countless plasma exchanges as my veins are bad. I also needed Hickman lines inserted. I have been on azathioprine, mycophenolate (CellCept), methotrexate and none have worked. I'm currently done with my herbal remedy I purchased from multivitamin cure which has totally cured my condition with a surprise after almost four months of their usage, I was discouraged and never thought I would be myasthenia gravis (MG) free today,to me the best way to get rid of this condition is multivitamin cure herbal recommendation because all medications I used never worked include mycophenolate (CellCept),contact the multivitamincare .org today Call Us (or SMS): +1 (956) 758-7882  to learn more about Myasthenia Gravis (MG) herbal remedies options.

    ReplyDelete