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    • #16468
      Jodi Enders
      Keymaster

      Let’s not pay attention to any medical suggestions, medical community beliefs, what your doctor has said you should or shouldn’t follow.

      About the time of my diagnosis a year ago, I decided to try a pescatarian diet and limited dairy to see if it would affect my energy levels. So far, I have found it difficult to notice how my body feels eating certain items and diets because of the constant illness and medication side effects.

      Despite my new symptoms last fall, I believe a more straight from the source diet helped push me through my last semester of classes. However, recently, my medicines have made it challenging to consume barely anything most days, and I struggle to hold weight.

      I often become so fixated that the diet is the solution. I put this pressure on myself to stay so strict with what I consume, forgetting that I have a chronic illness. Sometimes relief is out of our control.

      Columnist Retha De Wet reminds us of the importance of consuming what brings you joy. Often this means things in moderation, so one side doesn’t backfire and take away that joy.

      Despite knowing the unhealthy aspect, Retha views consumption based on how it makes her feel and believes every person with MG needs to find their version of Coke. We must allow ourselves permission to enjoy whatever it is that makes us feel better on bad days, despite whether others believe this is best for us.

      What diets/ways of eating have you discovered with experience work best for energizing an MG body? Are there any specific food items you avoid?

    • #16475
      Cyndi DeHoff
      Participant

      I have found intermittent fasting works well for me. I usually fast for about 16 hours. I find it’s just nice to not think about food during that time.  I also went gluten free

      I love to eat steak but it quickly makes my jaw very weak and sore. I have learned to eat ribeyes and only eat the very outside part which is really tender and easier to chew.  I try and eat lots of fruit and veggies and some chocolate everyday

      • #16517
        Jodi Enders
        Keymaster

        Hey Cyndi! Did it take you going perfectly gluten-free to notice changes?

    • #16522
      Cyndi DeHoff
      Participant

      Hi Jodi!   Yes is the answer. I was having stomach pain and upper espophagus irritation and chest pain that landed me in the ER. More than once. I finally went 100% gluten free and have to be very careful about cross contamination.  For example I can’t eat gluten free bread in a restaurant if they put it in a toaster that toasts regular bread because it will get gluten on it and make me sick.

      Having an auto immune disease is like buy one get one free my neuro said to me so he was not suprised that gluten was such a problem for me..

      I also try to cut down on the sugar.  I was able to completely go sugar free/grain free for a year and felt really good in regards to MG symptoms and no migraines.   I used Swerve for a sugar replacement in baked goods etc.

      Then the pandemic hit and I fell off the wagon and have a sugar addiction again ,so i need to work on that again!!

       

       

       

       

       

      to be very careful

       

       

       

    • #16673
      Ian D
      Participant

      For me, after years of having Mestinon prescribed and having endless pains, aches, weakness and leg cramps plus the usual double vision and weak eyelids, I went completely keto/carnivore in September 2020. In the eleven months so many issues have cleared up that my doctors told me could NOT be cured. Gastric reflux, fibromyalgia, skin eczema to name just three. My weight started to drop, my blood pressure reduced to better than it was when I was 18 (40 years ago) and, for the last four months I have NOT needed to take my Mestinon prescription. Eye issues have gone, no more muscle aches, no more leg cramps and way MORE energy. My optician even shows me that my left eye, the one most affected by MG has improved in sight tests.

      I completely removed all carbohydrates and removed all seed oils (sunflower, rapeseed oil etc). I eat all red and white meats, fish, six eggs a day and cook with ghee, lard, butter and avocado oil as well as being one meal a day fasting with a once a week 48 or 72 hour fast.

      I will be the first to say that the MG may be in remission but in my seven years of MG diagnosis, I have rarely had remission for longer than two weeks and NO doctor or Neurologist has ever suggested looking into food as an option. When you add that I have lost almost 100 pounds in weight and been zero alcohol for eleven months, I have rarely felt better as well as completely reversing the pre-diabetes Type 2.

      • #16745
        FrancisW
        Participant

        Hi Ian,  I’ve been thinking that in part MG is aggravated by an inflamed body chemistry  and that diet can help.  I am interested in your use of the Keto Diet.  Are there any resources such as books or websites that you can share with me.  Much appreciated.  John

        • #16753
          Ian D
          Participant

          Thank for getting back to me. Diet and the right types of food have certainly MORE than helped me 🙂  For immediate references I can point you to three eminent doctors who have a You Tube presence and all three are exceptional beyond words. They are Dr Ken Berry, Dr Eric Berg and Dr Eric Westman. All three have written books too. Dr Westman works out of Duke University and Dr’s Berg and Berry are registered family doctors. I am very happy for you to also contact me direct using my email address      [email protected]

          Go to youtube and enter each one in turn. They all three have a huge number of short and longer videos that will help you hugely and should you wish for my personal directions etc and my experiences, do please email me.

          Best wishes

          Ian

        • #16755
          Ian D
          Participant

          John I forgot to add this video for you. It is Dr Ken Berry being interviewed and is a must watch and go-to detail of the wonders and benefits of eating naturally in Keto and carnivore.

          (646) The Best Diet in 2021: Keto or Carnivore | Interview with Dr. Ken Berry – YouTube

    • #16846
      FrancisW
      Participant

      I am trying to add some supplements to my diet. Presently added Turmeric which contains Curcumin. There are lots of discussions about the anti inflammatory aspect of Curcumin in the Multiple Sclerosis world. Anyway, been taking it for about 1 week 3 times daily. Seems to be helpful. But maybe that’s just my hope talking. Anyway, does anyone add nutritional supplements to their diet ?

    • #16918
      FrancisW
      Participant

      Has anyone experimented with Vitamin D3 supplementation ?

      I see only 1 study on the subject that highlights the need for good levels – https://pubmed.ncbi.nlm.nih.gov/22672742/ talks about fatigue.

      Personally I took a blood test to get my current level and am considering pushing that level up by 50% thru supplementation.

      • #17005
        Ian D
        Participant

        Hi again

        Please have a look at Dr Eric Berg’s video here. It is exceptional and explains so much.

        (1078) Is 10,000 IUs of Vitamin D3 Safe to Take? – YouTube

        For me, I take between 10,000 and 20,000 iu of D3 daily and indeed it did take ages as he explains for it to take some effect but by using a carbohydrate elimination way of eating, the effects were faster than ever and the effects of the myasthenia have now reduced to ZERO for me.

        Hope this assists

        Ian

        • #17158
          Loren R Sloat
          Participant

          To abbreviate,  Are you saying you eliminated carbs, take 10,000 D3. And your MG symptoms have gone way?

        • #17189
          Ian D
          Participant

          Hi Loren

           

          Yes. Yes I have removed ALL carbohydrates from my food intake. I eat ONLY fats and proteins…ie…meat, fish, butter, lard, eggs (5 or 6 a day) with plenty of daily salt. I have stopped all alcohol use for the last twelve months and I NEVER use seed oils as they are far too inflammatory for us. I cook with coconut oil or butter or ghee or lard. Aside from losing seven stones (100 pounds in weight) I am now better than metabolically fit, reversed the pre type 2 diabetes and have come off all prescription medicines. My blood pressure…always a concern for the last decade is now better than when I was 18…40 years previous. I have had zero need for any of the myasthenia drugs I used to take for the past six months. I wish I had done this when first diagnosed with myasthenia in 2014. No one, not my doctor or neurologist has ever asked me about food. I am looking forward to my next Neurology appointment (assuming covid ever allows). If you ever wish to ask me more, please message me. Keep safe and well 🙂

        • #17192
          Ian D
          Participant

          Sorry Loren. My sentences about Vitamin D3 seem to have been mislaid. I can confirm that I take 10,000 to 20,000 units of D3 daily. Do watch this fabulous short video from Dr Eric Berg

          (1413) Is 10,000 IUs of Vitamin D3 Safe to Take? – YouTube

          For me I have never been in such perfect health and the amazing benefits I have gained are incredible.

          Best wishes

          Ian

        • #17161
          FrancisW
          Participant

          Thank you –  so much !

        • #17191
          Ian D
          Participant

          It is a pleasure to help and offer you something new and interesting 🙂  Best wishes always and am here for you should you need to ask me anything 🙂

    • #17197
      Amy Cessina
      Participant

      Considering  your immune system is linked to your gut and your gut health none of this surprises me. I watch everything I eat no exceptions I’m very strict on no processed or chemical laden foods and low sugar . I am so strict on foods it’s ridiculous but it keeps everything in check. I take no medication for MG and just had my yearly thyroid exam for hashimoto and she said one entire side of my thyroid has shrunken to normal. I truly believe food is medicine. I don’t supplement vitamins either.
      I would please advise anyone to check with their doctor before consuming such large quantities of vit d as above. There are conditions which would make this dangerous. We have to be careful here we don’t know everyone’s medical history.

      • #17205
        Ian D
        Participant

        Hi Amy 🙂

        Yes indeed, gut and gut health is so important and sadly so many people are deficient in gut health all because of a high carbohydrate, sugar laden and highly processed food intake sadly recommended as the standard western diet. It is also sad to say that so many doctors have little or no interest in nutrition and in fact receive little or no training in their studies. Most doctors simply err on the side of  caution simply because they have zero knowledge.

        In my recent blood tests from a fortnight back there is zero damage from my taking 10,000-20,000 iu’s of Vit D3. I do agree that every one of us is different but do please spare a few minutes to watch the link I have added at the foot of my message. For me, the teaching of Dr Eric Berg, Dr Nadir Ali, Dr Eric Westman, Dr Ken Berry, Dr Sarah Hallberg (all USA), Dr Mason (Australia), Dr David Unwin and Dr Malcolm Kendrick  (both UK) have certainly saved my life, reversed my pre type 2 diabetes, eliminated my high blood pressure, stopped the acid reflux, cured the ‘incurable’ fibromyalgia, stopped the eczema and psoriasis and as of 5-6 months, I am not needing any MG medications. Even my vision myopia has improved (optician is staggered in the twelve month improvement) and the blurred vision and ptosis caused by the MG has vanished. I fully believe that as my metabolic health is now the best it has ever been, the body can ‘concentrate’ on working on and coping with the MG.

        I do fully recommend viewing this. Best wishes for you always. Ian 🙂

        (1433) Is it Safe to Take 10,000 IUs of Vitamin D3? – YouTube

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