Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

First time in remission with ketogenic diet

Discussion in 'Alternative Therapies' started by leokitten, Jul 24, 2018.

  1. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    I'm cautiously excited and have been wanting to write this post to all of you, but I first wanted to make sure it really wasn't a fluke.

    I've been in remission or near remission for over a week now. I've never had any symptom improvement for more than a couple of hours for 5.5 years, and before 1.5 weeks ago my entire time having ME was slowly getting tragically worse.

    For those of you who don't know my story, I got sudden onset ME in January 2013. In hindsight there were some earlier signs, so accurately I would call myself gradual + sudden ("straw broke camel back") onset. It was a very severe shock and I didn't know what was going on for 6 months. Went to doctor after doctor helplessly and the only hints they found were large and hard lymph nodes in neck and groin, huge EBV/CMV/HHV-6 titers, and evidence of 800 heart PVCs/day (which I was feeling constantly in my chest the moment I got sick).

    As with most of us, all the specialists those first 6 months had no idea what was going on and how to help. So in August 2013 I started trying to figure out online what might be going on since my life was falling apart and that's when I found PR and literally cried because my symptoms and experience where exactly what was going on with so many of you.

    I went to see Dr. Susan Levine in NYC, she did a full evaluation and battery of tests and after those came in confirming everything we started on Valcyte + Famvir + LDN, supplements, sleep aids.

    I've had very classic ME. It was the worst in the beginning and through the first year, and like you know in the beginning you have more reserve to try to fight the disease process. Then very slowly during the second year my body kind of stabilized and I thought (mistakenly) that the antivirals etc were doing it. But during the second year, which I didn't realize it until later, the stabilization was just moving from the acute phase to the chronic phase. Since being in the chronic phase for the last 3.5 years or so I've been very slowly getting worse.

    As many of you know from my posts over the years, I've literally tried most everything. NOTHING ever worked. Thanks to all of you for posting all the different and interesting things to try, trust me it was worth it to try and have some hope of improving. Probably in my third year I really stopped posting much and stopped trying new things. I just said to myself nothing is working so all I can do is dig in, stick with the few medications which I think might help and just try to manage every day and keeping tabs on latest research.

    I've had mild severity ME until more recently, though always going to moderate severity in a crash. I've worked at my job through it all but it's been absolute hell and a herculean struggle with lots of missed days and vacation time spent to try and recover. Fortunately, working didn't cause a sudden severe worsening I heard a lot of people get, for me it's just been a very slow deterioration.

    Last year I would say I noticed that my worsening condition was more apparent. When I was mild severity I had symptoms constantly but could still work and would crash usually once per week and then could recover. The crashes very slowly started become more frequent and took longer to recover from, and the constant symptoms became more intense. It wasn't until this summer that I fully started having moderate severity ME. Everything flipped, I was crashed most of the week with terrible symptoms and I would only get out of it for two days before crashing again. I wouldn't be able to leave the house or do much of anything other than lie in bed. I've had to take extended time off work this summer.

    I've had a rare form of psoriasis since I was a teenager, and after getting ME it made the psoriasis much worse, harder to control, and ME and psoriasis flare ups went together. The last two years I started progressing to psoriatic arthritis, which is common for psoriasis sufferers that have had it a long time.

    The beginning of this year my rheum + derm begged me to try a newer biologic. In the past, I've taken other DMARDs (such as older biologics) and they didn't work very well or caused me serious side effects, plus having ME I was really worried to go back on one in case it would trigger a viral reactivation. Still, I decided since I was indeed getting worse with ME and autoimmunity that I needed to give it a shot. So I started with guselkumab (Tremfya), the newest and most targeted anti IL-23 biologic available.

    Guselkumab significantly improved my psoriasis and psoriatic arthritis symptoms and reducing flare up severity. But it did absolutely nothing for my ME symptoms. Something that was very striking to me was that my ME could make my psoriasis and PSA break through the Tremfya, which is a powerful drug. It made me think that my ME was being driven by something else entirely and it would cause an immune activation which strongly impacted the psoriatic process.

    During these years I've kept up with research always hoping for a breakthrough, in particular going through the Valcyte and Rituximab sagas. Then last year I think all the groups doing metabolomics (Davis/Naviaux/etc Stanford, Norway, Australian groups, Myhill UK, etc) published their findings showing similar metabolic issues at the cellular level, in particular the block with the glucose PDH route into mitochondrial cellular respiration and the extensive use of glycolysis producing lactate. These findings really struck a chord with all of us I think because it explained our symptoms more closely than I believe other previous hypotheses.

    These last couple months I started seeing people, in particular on PR, leveraging those findings and either trying dichloroacetate (DCA) + supplements or using a ketogenic diet since these treatments in theory it would unblock or circumvent, respectively, the above cellular metabolic issues. There have been quite a few people who've had major improvements or remissions.

    So sorry, long story short, I was basically losing all I had left these last two months and 2 weeks ago I said I need to push hard as I can to give one more try at something. Two things I hadn't tried where DCA or ketogenic diet. I read as much as I could about both and ordered everything I would need to to get either one started.

    Since DCA is potentially more toxic I decided to start with the ketogenic diet first. I was in the middle of a crash in bed and said ok I'm starting with a 48-hour fast, only drinking water and eating small amounts of ketogenic food, e.g. almond butter, olives, and celery (don't ask my why they were the only keto things I had in the fridge at the time). I lied in bed not able to move, so I slept, watched TV, and only ate those things

    After the fast I received the necessary starter things to do a ketogenic diet properly. Since I have ME, I knew that I need to be in strong therapeutic ketosis in order to see if this will work as a treatment. So I knew I had to take it much more seriously than a healthy person trying to lose weight or lower their lower blood sugar. I knew it had to be done with the same rigor as a cancer or epilepsy patient.

    I've had an absolute 180 deg turn with this disease, going from moderate severity in a crash all the time 1.5 weeks ago to now in a remission. I'm still in shock from how things have changed. Just off the top of my head, here are some of the major symptom improvements I've noticed in just 1.5 weeks:

    No more muscle tremors
    Fewer neurological problems
    Balance problems are greatly reduced
    No more visual blurring
    No more tinnitus
    Far reduced joint and muscle aches
    No more ME flabby muscles
    Hair stopped falling out so much
    Sleep much improved
    Cognition is like night and day
    Energy levels are really good
    Virtually no fatigue
    No PEM (though I need to test this by pushing harder)
    I am slowly working again
    No crazy pre-crash hunger

    I haven't gotten a chance to really push myself outside physically and/or mentally yet, but I will keep posting how things go.

    For those of you would want to try this, it's very important to do the following:

    1. Try to do the 48-hr initial fast (if you can)

    This will help jump start you into ketosis. It's not a water fast (which is really hard). You can eat maybe ~700 calories/day from food with almost no carbs and mostly fat. You can also buy exogenous ketone powder and drink that.

    2. Purchase a ketone and glucose blood monitor and strips (I would recommend Keto Mojo) and always measure your glucose ketone index (GKI)

    You will never really know if you are in therapeutic or high ketosis if you don't do this. Ketone pee strips and breath analyzers are inaccurate and totally worthless. You need to measure both ketone and glucose at the same time to know if your are in ketosis.

    GKI = glucose / ketone (each in same unit of mmol/L or mg/dL; blood monitors give in same unit)

    GKI Degree of ketosis Degree of dysfunction
    --- ------------------- ----------------------------------------

    <1 Therapeutic ketosis Epilepsy; cancer; ME/CFS
    1-3 High ketosis Type 2 diabetes; obesity; ME/CFS
    3-6 Moderate ketosis Insulin resistance
    6-9 Low ketosis Optimal health; maintenance; weight loss
    >9 No ketosis


    Here are my readings from this morning:

    Ketones = 4.4 mmol/L 20180724_134314705_iOS.jpg

    Glucose = 3.8 mmol/L 20180724_145344579_iOS.jpg

    GKI = 3.8 / 4.4 = 0.86

    So far I've typically been between GKI 1 and 2. I think that is fine for ME/CFS. Other people who respond to it might not need so a high level, I'm sure it depends.

    3. Purchase an app on your phone for completely managing your ketogenic diet (I would recommend Keto.app)

    Apps such as this make it so much easier to do day-to-day. They take in your personal data and tell you exactly what calories from carbs, proteins, and fat you should follow in the ketogenic way, i.e. 75% fat, 20% protein, 5% net carbs (carbs - fiber). You don't do more than 25g net carbs per day, and you don't do more than 1g protein per kg of body weight. You will fill up the rest of you daily calories with healthy fats, which is actually really easy to do.

    People screw up this diet all the time. For example, people eat too much protein thinking it's just another low-carb diet like Paleo. Protein beyond what your body needs will just be turned into glucose by your liver (gluconeogenesis) and just defeats the purpose.

    These apps have huge databases of food and you can scan UPC codes on labels to locate the product.

    4. Monitor your food intake accurately and RELIGIOUSLY.

    You cannot guesstimate, cheat, get lazy, or anything like that. Everything must be counted, weighed, measured, calculated from the nutrition label and serving sizes, you get the idea. With UPC code scanning it gets easier. If the diet could work for you then it won't have any possibility if you don't follow it in every detail.

    At first it's a pain in the neck, you just want to eat and it takes like 20 minutes get everything into the app correctly. You have to have your phone and put things in before you start eating which initially takes time. But as time goes by all of the things you eat or in there and you can copy them. It becomes more streamlined and less of a hassle. It actually becomes like a fun game. Eat out is very difficult to impossible.

    5. Make sure you are getting your electrolytes.

    Magnesium, sodium, potassium are very important in a ketogenic diet. You will pee more when not eat a lot of carbs and if you are deficient in electrolytes you won't feel well. Read more about this on keto info sites.

    6. Drink baking soda (sodium bicarbonate)

    Ketones lowers the pH of your blood. Drink a glass of water with 1/2 tsp of pure baking soda in between meals 1-2 times per day (I would recommend Bob's Red Mill Premium Quality Baking Soda, available at Whole Foods and other organic markets). Baking soda alkalizes your blood, helps to prevent any kidney stones, and there is some evidence that it could dampen immune activation. Since it could interfere with digestion it's important to drink it well in between meals.

    -------

    Your brain takes the most time of all your organs to utilize ketones. In fact it's the only organ that cannot totally use ketones exclusively. Even in maximum usage your brain will take 70% of it's energy needs from ketones and the rest must be from glucose. The 25g net carbs you eat will provide that glucose, plus your liver will make glucose from fatty acids.

    For the above reason, I believe because having ME our brains might not ever back to pre-disease performance using just ketogenic. Whatever is blocking PDH is still doing it. But my brain has definitely "woken up". ME makes your senses like the volume has been turned from 10 to -1. When I went into full ketosis I had this very immense and insane reaction where my brain could suddenly utilize energy much better and could actually function again. My brain and body were not used to it becuase its been so long. It was almost overwhelming and totally felt like I was high.

    I've seen a number of posts on S4ME and PR where people said they tried this diet and it didn't work or they felt terrible. I think first make sure you did all the above, that's important. Also initially on the diet you don't feel well but I found once I kept going all that just went away. For example, I had keto diarrhea for two days which is very common. I didn't get what is called the "keto flu" that healthy people get, I think because having ME and being in a crash when I started, and ME is 100x worse than most anything so a little keto flu didn't come up on the radar.

    I think too if you have a lot of ME-related food sensitivities or gut issues it could be hard to do it. Also if you had your gall bladder removed then it would also be difficult.

    God I have so much more I could say.... Those of you who know me and my background know I'm not messing around. I've had this disease for a fairly long time, was doing really terribly and on a trajectory of being totally housebound and this was my last ditch effort to try and improve. This has been no placebo effect and is not a spontaneous remission. I'm sure if I go off the diet my ME will come raging back. I was an athlete before getting ME and only gained a minimal amount of weight due to the disease. I do not have prediabetes or anything like that.

    I am definitely part of the possibly major subgroup that has glucose cellular pathway blocked and eating carbs actually contributes to the symptoms because your body’s cells cannot use it efficiently so it likely just causes inflammation and immune activation which reinforces the disease.

    Finally, I've formulated and written this entire long post without any ME symptoms coming back due to the exertion. That would of been impossible just a couple weeks ago...
     
    Last edited: Jul 25, 2018
  2. Silencio

    Silencio Senior Member

    Messages:
    311
    Likes:
    1,146
    Hi @leokitten, thanks for sharing. Very excited for you.
    I have tried jetpgenic diet before but never to the therapeutic degree you described. I did Wahls paleo plus which allows for more veg and uses MCTs to get into keto. I used a breath monitor and pee strips, but I realized the breath monitor didn’t seem very accurate. Then I tried the Atkins 40 but I didn’t monitor ketones and may not have been in ketosis enough.

    Is there a good recipe book or blog that you used to figure out meals? Do you have any go to basic meals that are easy to make w low energy?

    Let us know how you get on as you try to increase activity.. congrats again. :)
     
    Mary, Sushi and leokitten like this.
  3. ryan31337

    ryan31337 Senior Member

    Messages:
    536
    Likes:
    1,225
    South East, England
    Hi @leokitten,

    Fantastic news, I'm really happy its working for you.

    I also had very significant improvement from adopting ketogenic diet and my experience mirrors much of what you say. Unfortunately I found the improvements tailed off a little (but still very much improved) after a year or so, I do wonder if this was because I had exhausted the excess body fat I carried at that time and was not consuming enough fat. Food intolerance makes it quite difficult for me to consume the levels of fat required to remain ketogenic indefinitely, so for now I have settled into ~50g carb with increased protein. I don't get quite the turbo-charged feeling I had before, but certainly the impact of PEM, poor sleep, infections etc. are still greatly reduced.

    A muscle disease specialist did take note of my vast improvement on ketogenic diet and felt that added to suspicion of a mito dysfunction/disease - I am awaiting results from a muscle biopsy investigation still at the moment.

    In my case, and unrecognised in many others I'm sure, there was also a more straight-forward physiological benefit from the keto diet: its impact on GI dysmotility. My glucose control had gradually become more and more dysregulated as my illness progressed, despite not having diabetes, and GI symptoms of rapid gastric emptying were becoming a big problem. This is something increasingly well recognised in POTS/hypermobile patients. The keto diet removes the insulin/glucose spiking problem caused by dumping and the high fat slows digestion. I would not be surprised if many of us have these problems developing as a result of small fibre neuropathy.

    Ryan
     
    skwag, Mary, dannybex and 5 others like this.
  4. ChrisD

    ChrisD Senior Member

    Messages:
    350
    Likes:
    706
    East Sussex
    I've been using the Ketogenic diet for 10 months now as it leaves me in a much better state of health than Paleo, less PEM, no air hunger, better coordination and balance, about 10% more energy and mental clarity. But unfortunately it has not been such a miracle cure for me and I have been seeking ways to improve its efficacy such as using a Calcium Pyruvate supplement to maybe increase Pyruvate.
     
    Hufsamor, Mary, ryan31337 and 4 others like this.
  5. Ema

    Ema Senior Member

    Messages:
    4,718
    Likes:
    6,928
    Midwest USA
    I’m another ketogenic success story. I’m no longer housebound after many years. It took me a lot longer to see results initially though, but it was worth it.
     
    Mel9, cigana, CJB and 10 others like this.
  6. Jackdaw

    Jackdaw

    Messages:
    52
    Likes:
    121
    Does anyone know of anyone bedbound being helped by this diet? I am bedbound and worsening since this year. But have reasons to believe this might help but nervous of taking the risk.
     
    Mary and sb4 like this.
  7. ChrisD

    ChrisD Senior Member

    Messages:
    350
    Likes:
    706
    East Sussex
    This is a group I made last year to talk about Keto for ME and it now has 350 members! there are a couple of people who were quite severe and have improved a bit. Interestingly one guy is benefitting a lot from a Zero carb diet - from bedbound to able to sit most of the day.

    https://www.facebook.com/groups/333728640426460/
     
    kelly8, MEssias, Mary and 6 others like this.
  8. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    I don't cook any recipes for now. That would be my advice in the beginning. After researching and preparing a list of healthy ketogenic foods, my spouse took me to the grocery store after the 48-hour fast and we bought them. All simple, basic, and straightforward foods, I know it sounds boring but for the beginning of this diet its the best thing to do until you can get your energy back.

    Every day my app shows me how much of my daily calories/fat/protein/carb goals I've met. To add fat I eat avocado or guacamole, raw almond butter, macadamia or pecan or walnuts, olive oil on a dark green leafy salad with a dash of sherry vinegar, etc. Protein is easy, high quality organic deli meats like roast beef, turkey, chicken, sardines, mackerels on the salad above etc. The few carbs just come with those foods above (I'm always under the 25g net carbs by end of day). I will also just steam a small amount of spinach, broccoli, etc low-carb vegetables. I add chia, pumpkin, and flax seeds as a condiment to many things. It's good to stay on top of you fiber and get a lot of it (try for 30g per day). And finally, the app helps me keep track of drink water! I drink at least 2L per day.

    To be honest, and I've though about it a lot, food for right now can't be this exciting meal/recipe based thing. But you will see within a few days of starting that suddenly basic foods just taste amazing, you are really never hungry anymore, a ketogenic meal feels like more for the same number calories as carb-based meal, and you are always satiated after eating.

    More than a few carbs seems to be poison to at least the PDH inhibited subgroup of ME. I remember telling my spouse and family members back in the first year of this disease that I felt like i was being constantly poisoned. I really hope they will be able to figure out what is causing the inhibition.
     
    kelly8, JadeD, Mary and 5 others like this.
  9. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    Maybe add on the dichloroacetate (DCA) + B1 thiamine + ALA + ALCAR + CQ10 protocol?
     
    Last edited: Jul 25, 2018
    Mary and sb4 like this.
  10. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    To @ryan31337 and @ChrisD (and a few others I have to find their posts) - thank you for your stories and information on this diet. When I was very desperate and losing everything these last few weeks your information and results gave me the hope and chance to get control of the ME and my life again. You've both played a part in saving me from moderate/housebound severity and losing my career. We've all been living through hell, and it's us staying together and helping each other that gets us through this.
     
    Mary, dannybex, lafarfelue and 3 others like this.
  11. Silencio

    Silencio Senior Member

    Messages:
    311
    Likes:
    1,146
    thanks Leo.. yes, see what you mean, app is easy. I downloaded it. We already eat a lot of these foods so I just need to adjust quantities. My sister just grabbed a bunch of cream, avocados, eggs etc at the store so am already going! Thanks for all your tips.
     
    Mary, sb4 and leokitten like this.
  12. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    @Silencio please buy a ketone and glucose blood meter and strips too, that's extremely important. I would recommend the Keto Mojo meter as it's very accurate and the ketone strips are only $1 compared to e.g. Precision Xtra which are much more expensive. This diet definitely won't work if you aren't measuring your GKI.
     
    sb4, CJB and Silencio like this.
  13. Wayne

    Wayne Senior Member

    Messages:
    3,162
    Likes:
    3,748
    Ashland, Oregon
    Wow @leokitten, what a great story! Unfortunately I ran out of gas half way through, but did manage to make it to your note about no more tinnitus. I got tinnitus from an ototoxic drug in February, and am desperate to find anything that might help. Could you expound a bit on how serious your tinnitus was, how long you had it, what may have caused it. -- Thanks! -- Congratulations on your improvements!
     
    sb4 and leokitten like this.
  14. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    12,579
    Likes:
    36,480
    I was not able to read the whole thread but wanted to say congratulations @leokitten at finding the right thing for you that has brought you into remission! I am still hoping that we will start a forum or sub-forum in the future where we can combine all of these threads b/c I think they are very helpful and inspiring to read.
     
    bctjr1993, Mary, sb4 and 1 other person like this.
  15. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    I've had terrible tinnitus the entire 5 1/2 years of ME. The ME caused the tinnitus, I never had it before that. It was the worst the first two years (really loud and fairly constant, especially exploding when someone talked too loud near me or triggered by other noises), then as I moved into chronic phase it stabilized to daily periods of tinnitus with fluctuations.

    Now the tinnitus is gone... seriously... completely gone within a few days (as well as a host of other symptoms). So for me and others who've done a 180 with a ketogenic diet it was the fact that my body's and brain's cells were totally malfunctioning. They were still trying to use glucose for energy from the carbs I was eating in a normal diet and a crucial part of the ME disease process is blocking it at the cellular level. Only by switching my body to fully use ketones did everything everything change... some of us are strong anecdotal proof of the disease process discovered by the metabolomics studies.
     
    Mary, Silencio and Wayne like this.
  16. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    Have you thought of adding on the dichoroacetate (DCA) protocol?
     
  17. sb4

    sb4 Senior Member

    Messages:
    781
    Likes:
    951
    United Kingdom
    @ryan31337 Did you have gastroparesis before going keto and if so do you think it was caused in part by gastric dumping / BG issues?
     
  18. leokitten

    leokitten Senior Member

    Messages:
    692
    Likes:
    2,136
    Maryland
    Posting today's GKI! Everyday is like this....

    Ketones 3.4 mmol/L 20180725_160321438_iOS.jpg

    Glucose 4.0 mmol/L 20180725_160306311_iOS.jpg

    GKI = 4.0 / 3.4 = 1.18
     
    cigana and Mary like this.
  19. ryan31337

    ryan31337 Senior Member

    Messages:
    536
    Likes:
    1,225
    South East, England
    Hi @sb4,

    I had a few spells of possible gastroparesis before adopting keto diet but certainly not a major, persistent issue. Just episodes of 3-4 days, once or twice a year, where I would just lose all appetite and not be able to eat much.

    What was far more persistent were signs and symptoms of rapid gastric emptying and the related blood glucose issues you'd expect. Its still very much a problem now if I eat anything remotely sugary or carby, my limit is basically a small portion of non-starchy green veg with a fatty meal, otherwise GI plays up and the somnolence hits.

    Since being on the diet I have had increasing problems with portion sizes & fluids. It could be indicative of things swinging back the other way towards gastroparesis. I don't think we can tell much without motility studies though and assigning any causation is very difficult - I imagine the most commonly accepted issue would be that a high fat keto diet would make existing gastroparesis worse.

    Ryan
     
    skwag, Wayne and sb4 like this.
  20. sb4

    sb4 Senior Member

    Messages:
    781
    Likes:
    951
    United Kingdom
    @ryan31337 Yes unfortunately I have officially dx mild gastroparesis, protein and fat make it far worse but I get less heart pounding, carbs are the exact opposite, catch-22.

    Interesting about the sleepiness after meals. When I was first ill I would get this and fall asleep after every meal but since getting worse this has completely gone away. Maybe that is a sign that some kind of dumping is going on.
     
    Wayne and ryan31337 like this.

See more popular forum discussions.

Share This Page