16 Replies to “Contact”

  1. Thank you so much for this site. It has given me such hope and inspiration. I am taking to heart all the advice about nutrition, exercise, and rest. The doctors here (UK) are very focused on pharmaceutical drugs for treatment and do not encourage alternatives. I have chosen the alternative route, and am really grateful for your help.

  2. Hi,
    This is the nth time I am visiting your site. Just wanted to take permission from you. If you are fine with it, may I share your page on my blog/website.
    Its on my life with MG and beyond. This page on diet and food shall be helpful to many.
    And if you have the time, do drop by at http:/miracleme.cpallavirao.com
    The last I posted a comment was 2 years ago. Since then, I have gone thru remission and then a sudden Myasthenia crisis, IVG and all and the latest being a respiratory failure. What you say about MG patients to have sufficient sleep is so true. I was almost insomniac for a year and that led to hyperventilation and ultimately the CO2 levels in the body increased to drastic volumes and led to hallucinations, sleepwalking, sleep talking, falls….nightmares.
    Now I am home taking rest and writing my blog sharing my experiences.
    Do let me know.

  3. I found your website 18 months ago and I just wanted to say it has been an inspiration. I was diagnosed with MG 28 years ago and had been taking Mestinon for that entire time not realising that there might be an alternative way of approaching my MG and my overall health..
    I have been lactose free for five years but was again having signs of a leaky gut so I followed your advice and cut out grains and followed your diet suggestions including the daily green smoothie. Here I am 18 months later medication free. Admittedly this is only day three without medication but I am keeping positive about the future and with your help have come to understand that i can take control over my health..
    Keeping to the diet has been tricky at times but the thought of being fit and healthy has kept me going. Plus of course always being able to read your website to help keep me on track.. Thank you for being there when doctors just kept saying take the medication and were closed minded about a link between diet, the gut and MG. I feel that I am living proof that what you eat has a direct influence on your health..
    So a HUGE thank you. This has changed my life .

  4. I was diagnosed with MG in Sept 2014, had a thymectomy in Oct 2014 and went on Mestinon. More than one year of very mild symptoms but am now progressing to moderate (more fatigue, difficulty speaking and swallowing particularly at the end of a long day). I have great clinical care but am looking for tips on healthy eating and living. Also would like to know of any support groups in the Maryland area. Thanks! Courtland

  5. Happy to find your website. Diagnosed May 2015. Robotic thymetomy to remove thymoma July 2015. Agreed to take mestinon as it helped what we’re only ocular symptoms at the time. Started to develop bulbar symptoms. Agreed to take prednisone …. Temporarily. It caused an exacerbation. Currently hospitalized getting IVIG.
    Ready to fight back with nutrition so I can get off of prednisone, as the side effects are as bad as the disease. Worked too hard all my life to be healthy and then to have to be on theses medications.
    Thank you for all the work you have put into this, and for sharing your knowledge. I am ready to learn to live with myasthenia in the healthiest way possible.

    1. Hey Julia I read ur post and I feel like can relate to you . I got diagnosed wid MG January 2016 and 2 weeks ago I had my 2nd crisis which led me back to the ICU. The docs have increased my prednisone to 60 mg daily and the side effects are even worse . I sometimes wonder if the side effects are worse or the symptoms. I tried clean diet but have failed numerous times due to not being able to be constant with my diet plus I thought if am gonna be taking prednisone there’s no way am gonna lose diet even with the clean diet . I just wanted to know if you tried the clean diet while on prednisone and how that worked out for you . Please get back to me

  6. Hi,

    I am so thankful that I found your blog, you are doing great job sharing your knowledge and own experiences and encouraging us to change.
    I was diagnosed one year ago and it’s been tough. Since then I have been looking for information about nutrition, reading a lot about MG and found this incredible helpful blog.
    I need to do something !: I want to quit prednisone and I want to have a bright healthy life again. I have recently change my diet, I will let you know about the progress.
    Do you recommend any reading about nutrition for autoimmune disorders?

    Kind Regards from Mallorca

    1. I’m so happy you found this blog too! Recommended reading yes! I recommend you read Mind over Medicine by Lissa Rankin here: http://amzn.to/1RRjaQQ. This book will give you perspective and scientific data on attitude and how important the health of your mind is as it relates to the health of your body.
      Also, google Terry Whals and pick up the book ‘The Whals Protocol’ found here: http://amzn.to/1ehvZ9Z. Although this book is not related to MG, it may give you a better understanding or at least a new found realization via an actual medical doctor, that food has a great affect on our health. I hope this helps!

  7. Hello,
    Thanks so much for your research and for sharing your knowledge about MG.
    I have just been diagnosed in the past week and I am absolutely devastated and terrified. My symptoms are aggressive and tbh one month ago I was perfectly fine. Then BAM I Jair can’t believe it. I’ve never felt so unwell and scared. Too scared to actually sleep properly due to compromised breathing. Perhaps I need to find a chat room for support but you seem so positive and knowledgable is appreciate some advice and encouragement. I am a 48 yr old mom living in Australia with two beautiful teens and our world is crashing beyond my control….I’ve always been strong, well and positive but wow this is certainly shaking us up. Thanks, Daena

    1. Hi Daena and you are welcome as I have been there.
      You can get through this. I know you can. I also know it can be a scary thing to feel like your world is all of a sudden falling as the body seemingly has its own agenda. You can take a few things into your own hands starting today. Make sure you are getting amazing nutrition! Start making smoothies in your blender with bananas, loads of spinach, blueberries and water or coconut water. This isn’t a cure for mg but it helps supply your body with the quality nutrition that it needs to work the best that it can. That is something that helps me plus I bet your teens will not only love the taste of them but this can be a great time to start to improve everyones health, together. And they are quite easy to drink if some food may be unappealing or difficult.

      Sure this may be shaking things up but you are a strong human being. Remember that. Stay positive and try not to get down on yourself. Think of this as a bump in the road…it’s not the end of your life, but the beginning of a new journey.

      Learn as much as you can on being healthy overall. Lastly, you must get sleep. That is the time when he body restores itself. Find away to comfortably sleep so you are not afraid. Get with your doctor on that. Also, Facebook has quite a few MG groups for support if you wish to search. ‘Myasthenia Gravis positive vibes’ is a kind one. Here for you if you need. xx

      1. Thank you Shivaran xoxo
        I’m now recovering from a thymectomy and having a Thymoma removed. The Thymoma was about to turn nasty…I’m relieved but slow to recover, as it was major surgery. My specialists say it’ll take between 3-6 months to see where I’m at with MG and meds.
        I love the idea of the smoothies. My teens and friends have been amazing and very supportive. I am scared and concerned that this may define and limit the rest of my life…I’ve just been informed that a second cousin has also been diagnosed with MG…coincidence or a link to this condition being hereditary?
        I appreciate your advice and time. Hope you are feeling strong and well.
        Kindest regards,


  8. My mother had severe Myasthenia Crisis in Jan 2014, she had to be hospitalised & was in ICU for almost 5 weeks. Her symptoms improved after that for 3-4 months, now it has slowly started showing up again. She is heavily into immuno suppresants, steriods, mestinon etc.

    Have been looking out a lot on the Internet for diet for MG, came across your blog which has tons of information. Will try to incorporate these in her diet.
    Yoga & Pranayama is also something which we would like to start off soon.
    Thanks for this information, will keep watching this blog.

  9. I just found your blog and I can’t believe it took me so long. I have MG and have been trying different approaches for a few years now. I went into remission after being initially diagnosed with clean eating – I was vegan and cut out gluten and sugar for several months. After the birth of my 2nd son the weakness came back with a vengeance. Last year while looking into raw food recipes I learned about Paleo/AIP and Dr. Wahls Protocol. I haven’t been able to stick to it for longer than a couple of weeks at a time, but I’m excited to see a blog where I can read about others’ experiences! I”m looking for motivation! So many doctors completely deny that diet makes a difference with MG – but we know our bodies! Unfortunately, in Canada, I find the medical system has a very archaic method of viewing and treating MG, so I feel very alone in my battle.

  10. Good day! The information listed on your site will be very helpful for me because I have recently been diagnosed with MG. So far, it has severely impacted my active and professional life (I am a Soldier in the U.S. Army). I am no longer able to do my intense workout sessions, so the information about diet and activity will be vital in keeping healthy. Are there other resources available that give information regarding general information about the disease and limitations? There seems to be more information regarding MS as opposed to MG. Any information will be helpful. Thank you and have a good day.
    – Derix

Leave a Reply

Your email address will not be published. Required fields are marked *

Blue Captcha Image