Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

At Mark's Daily Apple Website -- Interesting ME/CFS Recovery Story

Discussion in 'General Treatment' started by Wayne, Feb 1, 2018.

  1. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    I just ran across this CFS recovery testimonial. She credits her recovery primarily on changing her diet, targeted supplements for mitochondria, and overall approach to nutrition...​

    How the Primal Blueprint Helped Me End My Struggle with Chronic Fatigue Syndrome

    In 2000, after an exhaustive round of tests, I was diagnosed with Chronic Fatigue Syndrome. Basically, I had deep and never-ending fatigue with no identifiable cause. Not knowing I had any other choice, I resigned myself to a life limited by my illness. I had to weigh each activity against how long it would take me to recover from it. Something seemingly simple, like taking a hike, could result in days of recovery time. I went from a highly active person who loved hiking and tennis to someone who had to take a nap after weeding for a half hour. In a nutshell, it sucked.

    For nine years I let myself accept that my life would have to suck. Then, in 2009, I came across information from a doctor in the UK who specializes in treating CFS. She had a detailed supplement plan…and she also highly recommended eating Primally to feed our mitochondria. Everything she said made perfect sense to me, so I set about following her plan. I started taking the numerous supplements, and I gave Primal eating a try. Unfortunately, I didn’t educate myself properly about how to eat Primally, so I just gave up the bad stuff and didn’t replace it with the good stuff I was missing. Needless to say, my Primal eating ended quickly. I had crazy cravings for bread, and because I hadn’t paid attention to how my new way of eating was making me feel, I simply gave up the Primal eating. I did keep on the supplements, though, and they helped enormously! I went from not knowing if I could get out of bed in the morning to at least being able to get up without wondering if I was really sick or just having CFS issues.

    Jump forward almost three years – this past March. I embarked on a food elimination plan for 28 days, just to see what would happen. After about two and a half weeks, I noticed a HUGE difference in how I felt. I actually had – gasp! – ENERGY. The brain-fog vanished. I could concentrate on tasks for long periods of time. When I got home from work, I didn’t collapse into a puddle of exhaustion on the couch. What could possibly be in my diet to have caused me to suffer from chronic fatigue for so many years?

    When I started the food-testing part of the plan, I got my answer: gluten and sugar. My reaction to them was almost instant, with the return of the brain-fog, sore muscles, headaches, and fatigue. There was no way to argue with my experiment: gluten and sugar had to go! So I started researching Primal eating again. Thank goodness, this time I found sites like MDA and Balanced Bites…resources to help me understand where I went wrong the first time and how to do it properly this time.

    [​IMG]

    Since March, I’ve lost about 15 pounds – mostly inflammation weight, according to my doctor – and have gone from wearing size 10/12 to size 4/6…and some of those size 6s are starting to feel big now, too!

    But the best part?? ENERGY! I genuinely had forgotten what it felt like to not be in a fog of exhaustion all the time. Pre-Primal, I could manage to work a full day and *maybe* run an errand after work (I generally made excuses for myself about why I could skip the errand, though). Now? Well, here’s an example of what I did one day last week: worked all day, ran two errands, came home and took care of my cats, mowed my lawn, fixed dinner, and put together breakfast and lunch for the next day! That would have been utterly unthinkable for me 6 or so months ago. Now, it’s normal.

    Going Primal has absolutely given me my life back! When I was first diagnosed, I never would have thought that my diet was to blame. Such a simple fix to make my life worth living! I do wish I’d been successful going Primal three years ago, but I am so very grateful that I finally discovered my cure. Thank you, Mark, for all you do to help people like me make amazing changes in their lives! Now that I understand what Primal can do for me, I’ll never look back.

    Amy
     
    ChrisD and Rlman like this.
  2. Bansaw

    Bansaw Senior Member

    Messages:
    415
    Likes:
    241
    How does Primal eating differ from Paleo?
     
  3. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    Can't really say, as I know nothing about what primal eating entails. I ran across a recommendation for this website this morning, went to it, typed CFS in the search engine, and came up with the recovery story. Wish I could add more, but at this time, I don't know any more than anybody else who reads the article.​
     
  4. Lynn

    Lynn Senior Member

    Messages:
    361
    Likes:
    241
    I believe they are about the same thing. I have been eating paleo for a few years and am now eating a ketogenic diet because of high morning fasting blood sugar (which went down but is still high). Neither diet which eliminates gluten and sugar has helped the ME/CFS symptoms.

    Lynn
     
    Wonko, E.man and Wayne like this.
  5. Runner5

    Runner5 Senior Member

    Messages:
    322
    Likes:
    527
    PNW
    I'll take undiagnosed Celiac for $500 Alex! :p
     
    J.G, Mel9, MTpockets and 5 others like this.
  6. Runner5

    Runner5 Senior Member

    Messages:
    322
    Likes:
    527
    PNW
    It's my personal #1 dream to find I can just avoid one or two food items - drop a ton of weight in the process - and be completely cured. *day dreaming* :D
     
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,616
    Likes:
    34,147
    USA
    This is not a judgement or criticism of anyone but I find that in most of these recovery stories the person did not have POTS or orthostatic issues which prevented them from standing/walking. It sounds like at her worst, the woman in the story could still work full-time and go hiking and even described hiking as "simple"! Her worst is where I can only dream of achieving.

    It seems like in these stories "fatigue" was the #1 problem vs. POTS (with tachycardia, shortness of breath, chest pain, etc, upon standing/walking) which are very different IMO. And I totally get it that this board is for ME/CFS and not specifically for POTS or Dysautonomia so this is not a criticism whatsoever.

    I dream of the day that there is a story of someone/somewhere with POTS (or more specifically Autoimmune POTS which is my diagnosis) who used a wheelchair for many years but is now back at work full-time, able to stand to vacuum, able to walk their dog, able to climb stairs, etc. And hiking exceeds my wildest expectations and is not even on my list.
     
    J.G, Mel9, PatJ and 7 others like this.
  8. matt321

    matt321

    Messages:
    84
    Likes:
    76
    I am well versed with MDA and this approach. It is a significantly important part of improving our health...no matter what ails you. In my recovery thread, I mentioned understanding what is actually going on biologically and then working backwards to rule things out. Eating and living this way may seem foo foo, but it works wonders for allowing the body to reach a state of internal flourishing. Not doing this is leaving things on the table that are well known to be of great benefit.

    I am now an amateur expert and have the before, during, and after blood work to corroborate this approach. It's not a point a shoot or avoid this or that kinda thing. Its a life style. It's about putting your body in a natural state of being for enough time to allow it to heal and regenerate. Try living this way and you might find that not only does it improve your life, but it also turns the lights on (so to speak) about lots of other things.

    This was the corner stone beginning of my recovery.
     
    Last edited by a moderator: Feb 1, 2018
  9. MTpockets

    MTpockets

    Messages:
    10
    Likes:
    29
    While I totally agree that the way you nourish your body can have a huge impact on health...I have massive doubts as to the ability of diet curing ME/CFS. Prior to getting ill, I was eating a 100% organic homemade, homegrown diet for years. After falling ill, I went on an extensive autoimmune-paleo diet, eliminating any potential triggers, eating to heal my gut and slowly introducing food groups over the course of years.

    While my overall body condition has improved (my hair looks great, my daily stomach pain is gone and my digestive issues are all but gone) but I'm afraid I still need a walker to get from my bed to the toilet, I still have seizures and neurological symptoms, I still spend months bedridden, my ME is alive and well.

    Like Runner5 I am all for there being a diet or lifestyle to fix this...But after 10 years of experimenting, I think I may have tried everything out there. Vegan, check, juicing, check, water fasting, paleo, GAPS, fermenting, raw food, blood type, food combining,Keto, low fat, high fat, low carb, high carb and everything in between. I definitely see the benefits of good nourishment, probably especially for OUR bodies, and personally I believe I would be worse without eating well. But a cure has yet to find me by way of what I put in my mouth.
     
    ChrisD, lemonworld, AndyPandy and 5 others like this.
  10. Eiren

    Eiren

    Messages:
    52
    Likes:
    35
    Primal is like Paleo except it includes dairy, raw dairy and fermented dairy preferred, for those who tolerate it.

    Theory is that lactose-tolerance-persistence began in humans a really long time ago, and is a quite beneficial adaptation (for those who have it).

    It's mostly a brain-child of Mark Sisson, but it's been around for so long now that it's not limited to him anymore.

    If you read the comments on MDA, Amy herself says she doesn't think it's a magic cure for ALL people with CFS. But it worked for her (which is great) and she thinks it's healthy for everyone (which could be very true, especially compared to a "normal" crap-food diet).

    I've been "primal" for over 5 years now, LCHF. Sometimes "off the wagon" but mostly keeping to the 80% guideline Mark has. Lately I've been more strict, but....yeah, it's not magic for me.

    It is sorta annoying. I search the internet for therapies that could help me out with whatever I have, and it's all "The secret is gluten-free!" I already do that, "The secret is coconut oil!" I already do that too, "The secret is magnesium!" Do that too. And on and on.

    I do plan on keeping to Primal. I don't feel worse when I keep to it. So there's that.
     
    DoggerFisher, MTpockets and Wayne like this.
  11. Rlman

    Rlman Senior Member

    Messages:
    281
    Likes:
    169
    Toronto, Canada
    this lady's recovery story from POTS, though unlikely autoimmune POTS: wheelchairtorollerblades.com
     
    Wayne and Gingergrrl like this.
  12. Hip

    Hip Senior Member

    Messages:
    10,812
    Likes:
    17,985
    It says in this article that these two diets are almost the same, apart from the fact that primal allows dairy, nightshade vegetables and coffee, whereas paleo restricts these.
     
    Rlman likes this.
  13. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,616
    Likes:
    34,147
    USA
    Thanks @Rlman and bookmarked the link to read later.
     
    Rlman likes this.
  14. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    Hi @Gingergrrl,

    I just read it this morning, and I would encourage others to read it as well--I thought it was a truly remarkable story. I'm well aware of all the "fuss" that gets stirred up whenever things like brain retraining programs are brought up, and I've had my own serious reservations as well--especially the "secretive" part of it.

    But this article seemed to present the case for neural retraining in a new light for me. Don't know whether I'll follow up with DNRS, but I'm more intrigued now than ever. Trauma to the brain (in whatever manner it occurs) seems like it could certainly throw our whole limbic system off kilter. -- Thanks @Riman for posting the link!
     
    Rlman likes this.
  15. pamojja

    pamojja Senior Member

    Messages:
    981
    Likes:
    1,058
    Austria
    After your remark checked it out. However, to charge basically for a book about 250 bucks (one can get a transcript for someone to read it out, if one is too weak to watch the DVD oneself) and such a professional made marketing site is really off-putting to me. There are enough such self-help books around, one can get already for 10 bucks used.

    All I see is greed and taking advantage of people in need.
     
    iwillwin1day and Gingergrrl like this.
  16. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    Hi @pamojja,

    I hear what you're saying. But, it really was quite a remarkable story--right? :)

    Lauren's story reminded me somewhat of one of the more amazing posts I've run across on this forum. The poster related how he achieved a complete remission from all of his symptoms for four days using neurofeedback. Unfortunately, a followup session undid all his improvements. -- Starcycle's 4-Day Remission

    Both of those stories are in line with my perception that pwME/CFS have some kind of switch(s) that have been flipped. And if they could be "reflipped", then health recovery is possible. I think there's a number of different ways that could be accomplished. -- My hope is to find "my way" some day. My best guess is it just may be mHBOT--if only I could afford a home unit.​
     
    pamojja likes this.
  17. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,616
    Likes:
    34,147
    USA
    I just read through the website and have to agree with you @pamojja. For me it just seemed like a long advert/ promo for Annie Hopper's DNRS program which is not something that I endorse. I know someone who did her DNRS program, and believed in it with her whole heart and soul, only to relapse and is now worse than she was before. And part of the program instructed her that she was no longer to associate with her friends, or on message boards, with people who still "believed" that they were sick. We didn't "believe" that we were sick, we WERE sick.

    I was an LCSW/ therapist for 16 years before this illness ended my career. I believe in psychotherapy and even CBT when done properly. I do not believe that something like DNRS can reverse ME/CFS, POTS, MCAS, or the long list of conditions stated on her website. My case (and every case) is unique but I was found to have autoantibodies that match with LEMS (Lambert Eaton Syndrome) and other autoantibodies that match with POTS and was given a diagnosis of "Autoimmune POTS" (and I believe in the future that science will divide POTS into many sub-groups).

    In total I have 11 autoantibodies (and probably more but we stopped testing b/c it would not have changed my treatment). After two years of IVIG and (almost) one year of Rituximab, I can honestly now say that my POTS is in remission. Yesterday while out doing errands, for the first time I walked up a hill (vs. walking on a flat surface) and was not short of breath and had no tachycardia. I have not yet climbed a flight of stairs but am going to try it soon and believe that it is now possible. For those who know me, I could not stand or walk without a wheelchair, or drive, for almost 4 years. I can now do these things with ease (not sure yet about the stairs but will find out soon).

    I have seen a therapist for most of the last 1.5 years and she has helped me immensely with coping with my pending divorce, with the illness and then death of my mom, and many other issues. I absolutely support the therapy process (individual, couples, groups and all different modalities). But I do not believe that any form of psychological therapy can cure POTS (or other chronic physical illnesses).

    I have multiple autoantibody driven diseases (Autoimmune POTS, an atypical form of LEMS, Hashimoto's Disease, plus MCAS). I tried endless treatments that did not work. In 2016, I started immune modulating treatments and wiped out my B-cells (which produce the autoantibodies) and am now in remission. If I do not lose this remission and it continues when my treatments stop, I now believe that I will work again and get my career back. I could not have attained this from DNRS. Just my person opinion b/c I was tagged and don't want to see others taken advantage of by these kinds of programs as the friend I mentioned above.
     
    Wayne, J.G and pamojja like this.
  18. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    I guess I would just like to mention briefly, that I'm not endorsing DNRS--I don't even know that much about it. And I certainly don't endorse anything that pushes us beyond what we can tolerate (or integrate). If there's one thing that is apparent to me is that no one size fits us all. And if the DNRS people don't take that into consideration, then that's a black mark on their program.

    The point I was trying to make, was that it makes sense to me that the limbic system of the brain is off kilter for many of us, and whatever can be done to restore harmony would likely be beneficial. -- I mentioned Starcycle's experience with neurofeedback. The topic of this thread was how a woman got well with a nutritional approach, and I believe that will almost always help with brain harmony.

    Dr. Jay Goldstein, a pioneer in treating CFS, wrote a book entitled, "Betrayal of the Brain". He used a host of pharmaceutical drugs to find "just the right one" that would restore normal functioning. It was not uncommon for some of his patients to walk out of his office feeling many times better than when they went in. The problem was, it was never known how long it would last--from a few hours, to a few days, to a few years...

    I've read remarkable stories of people restoring brain harmony by using energy balancing techniques. Here's a link to a short video: Balancing the Cortices Technique. Others have used things like EFT, and various other forms of energy medicine. I think there's a wide variety of things that will work for different people.

    I really don't doubt that Lauren's story of how she improved with DNRS is not true--I think that's the crux of the story. Not the method she used to get well, but the fact that she was able to get well at all. I always take heart when I read stories like that. From all my reading on ME/CFS and a host of other maladies, it seems like the downward cycle can almost always be traced--at least in part--to a malfunctioning brain and/or neurological system. And I rejoice when a person finds just the right method for them to restore a lost harmony.

    Best...
     
    Rlman likes this.
  19. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,616
    Likes:
    34,147
    USA
    Thanks for clarifying and I didn't actually think that you were endorsing DNRS but the website link definitely was. It was one of the biggest adverts/ promos for DNRS that I have ever seen. To me it shared a fantastical story that would get desperate people to purchase a very expensive product in the hopes of a total cure.

    They definitely do not and even advise people to eat foods which had caused them anaphylaxis. You cannot overpower anaphylaxis with the mind (whether DNRS techniques or another program).

    I absolutely endorse nutritional approaches and if I had not followed an extremely low histamine diet (in combination with meds) for about 1.5 years, I don't even think I would be alive today.

    I rejoice, too, and I am still hoping that we will be allowed to have a new sub-forum where people can share their story about things that have helped them. I just don't want it to be an advert for DNRS or money making scams (with direct links to purchase very expensive products).
     
    Wayne and pamojja like this.
  20. Wayne

    Wayne Senior Member

    Messages:
    3,046
    Likes:
    3,411
    Ashland, Oregon
    I think that's a good idea. Have you broached this subject with PR? I don't see why that wouldn't be perceived by them as a good idea as well.​
     
    Last edited: Jul 14, 2018
    Gingergrrl likes this.

See more popular forum discussions.

Share This Page