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
Glucose = 3.8 mmol/L
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...
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
Glucose = 3.8 mmol/L
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...
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