has anyone stuck religiously to Dr Myhill's protocol and hadsignificant improvements?

[richvank]

Sian, I have one more question if that's ok. Do you have any theories on how sugar is implicated in m.e? Any thoughts on candida? Thanks

Hi, anniekim.

I'm not Sian, but for what it's worth, here is how I think sugar is implicated in M.E.:

1. Most people who have M.E. seem to have intestinal bacterial dysbiosis and yeast infection. I don't think that sugar is what causes this, but once it is present, sugar feeds this situation, because yeast ferments sugar, and some of the dysbiotic bacteria do, too.

2. Most people who have M.E. have depletion of reduced glutathione, and this gives rise to oxidative stress. In the mitochondria, aconitase, an enzyme located early in the Krebs cycle, becomes partially blocked because of this. Sugar, being a carbohydrate, must be processed by the glycolysis pathway to form pyruvate, and that then is converted to acetyl CoA by the pyruvate dehydrogenase complex. The acetyl CoA then enters the Krebs cycle by its conversion to citric acid. Unfortunately, the partially blocked aconitase is then supposed to convert citric acid to cis-aconitic acid and then isocitric acid. But since it is partially blocked, these conversions are hindered, and if the intake of sugar is too high, what happens is that citric acid goes into formation of fatty acids, which are stored. If the cells are not able to even accept the glucose that comes from ingesting sugar at the rate is is put into the blood, the insulin level rises, and that also will cause glucose to be converted to stored fat. So the bottom line here is that if sugar is taken in at a higher rate than it can be utilized, the person will gain weight. Some people gain 40 pounds or more if they continue to eat carbs (including sugar, but also starch, which is converted into glucose (a sugar) in the gut). It's important for the insulin to rise in order to lower the blood glucose level, because otherwise the glucose will react with proteins (glycation reactions) and that causes other problems (advanced glycation end-products).

3. When insulin rises to convert the glucose to stored fat, it tends to overshoot, and then the blood glucose level goes too low (hypoglycemia). Since most people with M.E. also have dysfunction of the HPA axis, there is not very good control over hypoglycemia. If cortisol is not able to come up to control it, the fallback is epinephrine (adrenaline) to make sure the brain will get enough glucose, which is its main fuel. This can produce an adrenaline rush, or even a panic attack.

So I think there are three issues with consuming sugar in M.E.--feeding the bad guys in the gut, building up stored fat, and producing hypoglycemia, with its unpleasant results.

The solution to this is to restore the glutathione level so that carbohydrates can be used normally by the mitochondria. That requires lifting the partial block in the methylation cycle, and that is what the methylation protocols are designed to do.

Best regards,

Rich

 

[sianrecovery]

What a wonderful and precise answer - I couldn't hope to compete with it. I might add from personal experience - I have always had a problem with sugar - maybe this is partly explained now by the KPU diagnosis. - When I read a book called Potatoes Not Prozac years ago, I recognised that I had been surfing the waves of insulin as a means of managing energy and mood. I am in recovery, and I also spent many years working in addiction, and I think that some people genetically are less capable of processing sugar than others. Alochol is of course a sugar experience par excellence. I have seen that without doubt among addicted clients and contemporaries. The high incidence of alocholism in certain sections of indigneous populations (alongside poverty and marginalisation obviously) also speaks to this. So - with ME - yes - gut dysbiosis - yes - impaired mito function - and possibly an addictive process which reinforces both of those things in a nasty feedback loop. I dont know - guess I need to remind myself its the first one that does the damage. Either way, this has been a really useful discussion for me - thanks Annie Kim for kicking it off, and thank Rich for the clarity

 

[justy]

Thanks Sian and Rich for your thoughts on this subject. I ma very much in the same boat re sugar and addiction - have read potatoes not Prozac as well - a good little book.
Justy

 

[anniekim]

Thanks Richvank and Sian for your thoughts. I've heard a condensed version of the insulin connection before. I try to eat low gi foods, moderate starches, but I can't kick the desire for a small amount of sugar each day.

Sian, how would the kpu fuel your sugar addiction? Thanks.

Rich, do you have any thoughts on why bacterial dysbyosis occurs in m.e?

 

[sianrecovery]

I'm still getting my head round the KPU thing - but in Scott Forsgreen's article on it, Kryptopurroluria, A Major Piece of the Puzzle, which is downloadable from his betterhealthguy website, hypoglycemia and glucose intolerance are listed as symptoms, and manganese, one of the minerals affected by KPU, is described as necessary for glucose utilization. I think I read elsewhere it can also affect levels of chronium, but cant remember the reference. What puzzled me for years is why the craving for sugar doesnt go away in recovery - I havent had a mind altering substance for 15 years, and the craving went and never returned via the recovery process - but with sugar, the craving has never gone. Rich's explanation above is the best answer I've had for that. I guess complete abstinence from simple sugars is probably the only way forward.

 

[Trooper]

I have done some of the basic things from Dr Myhill's website and have had some improvement. Firstly I sorted my sleep out. This was something I couldn't do in the initial years of my illness, but overtime I had become a night owl. Getting to bed before midnight has given me a small, but noticable boost.

Then I went paleo for a couple of months. I introduced potatoes and rice over time, and thankfully I could tolerate them. I say thankfully because full paleo is hard and expensive and can also be quite tiring as I was always cooking, preparing food, snacking or shopping.

I guess paleo is similar to an elimination diet, and from this I have found that I am intolerant to gluten. Within hours of eating gluten I get that M.E. poisoned feeling. And now when I get that feeling I go back and check what I was eating and sure enough, gluten was there in some form or another eg. I made some gluten free bread, used vinegar in that, that was malt barley vinegar = reaction. Doh. It's a learning experience.

It's still early days and I'm still working out what I can and can't eat but going full paleo for this time was well worth it. I'm relapsed at the moment due to overactivity, but generally I have had a noticable boost in health by doing these two things.

Worth a try, but it depends how ill you are to start with. My personal experience tells me that whatever I did in the 'early years', wouldnt have affected the monster that is M.E.

Cheers and all the best

 

[anniekim]

Thanks for the replies Trooper and Sian.

Sian, the obstacle for me as even though giving up all sugars may be the right way. (when you say giving up all simple sugars, i presume you mean as well as table sugar, sugars from starchy carbs?) I still haven't managed to, the craving is extreme. I don't have to have lots of sugar daily, just a little bit. If I start to try and cut it out completely then I end up eating even more and feeling an utter failure. I sometimes wonder whether it's just genetic and I simply like the sweet taste.....

I tried a low carb diet last year. Sugar craving was a bit better but I felt so ill. My body did not adjust well to ketosis

 

[maddietod]

Re sugar cravings. I eat all non-dairy proteins, all non-starchy vegetables (except for nightshades), and a piece of fruit maybe once a week. After 3 days, I lost my appetite and all of my cravings. I am not advocating this way of eating - I'm doing it for specific health reasons. But this is the first time in my life that all sugar/starch cravings have absolutely disappeared. I'm also not saying this happens for everybody. I have no idea.

I have noticed that the very occasional piece of fruit, or bite of chocolate, doesn't set off cravings. Small bite, once a week.

 

[Dreambirdie]

What Madie said. Once you retrain your palate, the sugar cravings vanish for good.

I have not eaten sugar for three decades and don't miss it. Sometimes fruit even tastes much too sweet to me.

 

[richvank]

Rich, do you have any thoughts on why bacterial dysbyosis occurs in m.e?

Hi, anniekim.

I think it can happen in two basic ways:

1. Some people have been treated with antibiotics for other reasons, such as long-term doxycycline for acne, or broad spectrum antibiotics for a bacterial infection or a presumed bacterial infection, whch may actually have been viral. Sometimes this is also coupled with a poor diet that is high in sugars and starches and low in essential nutrients. This can bring about dysbiosis, and it can then be a contributor to the onset of M.E. in a person who has the genomic predisposition.

2. The other possibility is that the M.E. onset occurs first, as a result of some combination of a variety of stressors (physical, chemical, biological and/or psychological/emotional) in a person who has the genomic predisposition toward developing M.E. This sets up the chronic vicious circle mechanism involving glutathione depletion, a functional B12 deficiency, a partial block in the methylation cycle, and loss of folates from the cells. These aspects of the vicious circle have a wide variety of effects, some of them in the digestive system. For examples, stomach acid production decreases because of glutathione depletion in the parietal cells, pancreatic digestive enzyme excretion decreases because of the partial methylation cycle block, gut motility goes down because of low production of acetylcholine and serotonin, repair of the gut lining slows down because of the folate deficiency, IgA decreases because the HPA axis becomes dysfunctional as a result of glutathione depletion in the pituitary, and the function of the immune system in the gut (where most of it is located in the body) is impaired. The results of all these effects are that dysbiotic bacteria and yeasts that come in with the food, especially fresh food, are allowed to pass through the stomach and enter the duodenum. Because of the slow motility, dysbiotic bacteria and yeasts are able to stay in the small intestine at higher than normal levels (SIBO or small intestinal bacterial overgrowth). Because the food is not properly digested and absorbed, it is left for these bacteria and yeasts to ferment. The immune system is not effective in controlling them. Damage to the gut wall is not prevented by IgA, and is not repaired at a normal rate because of low folate. So it's kind of a perfect storm in the gut.

In my view, the methylation cycle and the digestive system need to be treated together, because each affects the other. If the gut is not in good operating condition, nutrients will not be properly absorbed, and toxins will not be properly excreted in the stools. So there are interactions in both directions, and I think that both need to be brought up together.

Best regards,

Rich

 

[anniekim]

Thanks Rich for your thoughts, much appreciated

Thanks too dreambirdie and madietodd for your thoughts on sugar cravings. A few years back I managed to cut out sugar for ten weeks. I found it very hard and missed chocolate big time!

Madietodd, were the first three days of no sugar very hard for you? Also do you eat grains/complex carbs and pulses or have you cut them out too? As i said i tried this a year ago, i felt terrible, pain increased too. Also it was very expensive as i was so hungry and i had to eat a lot of meat, fish and vegetables. Living on sickness benefits I couldn't have afforded it long term. Thanks

 

[Insomniac]

My experience

I went to Dr Myhill back in 1995. Her treatment caused a severe worsening of my symptoms that have never improved.

Back then she did not do the Paleo diet. She did some overly severe elimination diet that was tougher. I strongly regret following it to the letter. She gave me EPD injections and supplements.

She mentioned to me then that she once tried the "Pear and lamb diet on people but it made them "stuck" on those 2 foodstuffs. She related it to me like it was an ordinary passing thing. I should have got suspicious then.

I lost a hell of a lot of weight on the elimination diet and after 2 injections of EPD and 6 weeks on the elimination diet I was unable to tolerate many foods. I've recovered enough to eat eggs and tolerate a few more foods since then but I have never recovered to what I was before when I could eat everything. I think that her old elimination diet was too severe, not allowing me to get enough calories and taking her Biocare synthetic vitamins was a poor replacement for eating a wide variety of food. I also wonder if she made up the EPD injections wrong because they need careful making up and even if they are made up properly, some people respond well to them while others, like me, get even more allergies. Alternative practitioners say that the EPD injections sometimes "unmask more allergies" when really all they've done is *give* you more allergies. The fact is that no mainstream state system in any country uses them as standard allergy treatment. When I didn't improve on her protocol, I phoned her up to ask for help she just said "You should be better by now."

Many forums have deleted my posts stating my negative reactions to her protocol. I hope my post here is kept because I am just relating my personal experience.

Edit: I forgot to say, I stuck rigidly to ALL Dr M's protocol during her treatment. As well as the EPD, diet etc. I also did Magnesium injections, B12, basically everything that was in her protocol at the time in 1995 to the letter.
I deeply regret it.

 

[maddietod]

Anniekim, I now only eat the foods I listed. When I started out, I had milk in coffee, or sometimes soymilk, and my treat was dark chocolate covered cashews. Not many!

The 3 days were not terrible, but I prepared. I had a lot of food around already cooked, and I ate whenever I was hungry. I already knew that I need to eat a lot of protein when I go off carbs, and I did that. I also made up a few loaves of Elana Amsterdam's Paleo bread (almond flour), sliced and frozen. Toasted, with eggs for breakfast, it's very filling. [You can google her food blog; free recipes.] So........I was hungry and ate all day, but then I suddenly didn't care about food any more.

It was expensive at the beginning, but now I really don't eat much. Since I was spending a lot of money buying or baking gluten free foods, and I don't eat any starches or grains any more, I'm actually spending less on food now.

I was worried that I was taking this thread off topic, and then I saw that it's your thread! I hope this is OK, and helpful.

Madie

 

[Freddd]

This is mainly for Brits as it's about Dr Myhill who is a doctor here in the UK.

Over the years i find myself referring back to Dr M (female doc in Wales, sure many know who I'm referring to) website. I know some people really credit her but I find myself always a little bit perplexed by her M.E treatments and her take on M.E. She often repeats M.E is not a diagnosis but a symptom and then refers to all the different things that can cause fatigue... As to me, my m.e is so much more than fatigue I get a tad confused with her take.

Also I know she is very big on diet, cutting out wheat, dairy, and sugar. I always end up feeling so guilty as although I only eat wheat infrequently now, have switched my dairy to goats products as seem to get less diarrhoea on it, i don't seem to have the willpower to cut out wheat, all dairy, even goats, and my biggest problem, sugar. I really crave some sugar daily. I try to not go mad on the sugar but the thought of cutting it out entirely makes me feel very depressed. I know Dr M would say i am addicted to it and probably have an overgrowth of candida in my gut.

I was wondering if anyone on here has followed Dr M's treatment for a good period of time as i know she adds in things as each section is treated. And if you have stuck to it all, have you noticed significant improvements?

Also Dr M on her website claims many people have made full recoveries with her treament plans and she is so successful in treating people that she has a six month waiting list. I wonder whether she has a six month waiting list because people are desperate and not because so many people have made full recoveries... I don't want to sound negative about her. I wonder whether her stance makes me feel guility as I don't believe deeply enough in her protocol to make the necessary huge changes and then think my lack of belief and willingness to stick to her protocol could be preventing me from improving...

Many thanks in advance

Hi Annikim,

I know that careful adherance is generally required for the active b12 protocol http://forums.phoenixrising.me/showthread.php?11522-Active-B12-Protocol-Basics to work, it has a lot fewer food restictions because most of them make no difference if you have the right things and avoid the small list of detrimental things.

 

[Arius]

I have mostly just followed the dietary aspects of Myhill's protocol by reading her website. It's been about 2.5 years and I've seen enough improvements to justify continuing. It's part of a holistic program I developed for myself that includes proper sleep, anti-stress activities, pacing, etc.

Before I started the diet, I was going downhill fast. Couldn't remember the names of food items in the fridge. Couldn't do simple addition in my head. Couldn't stay on top of basic chores like showering, washing dishes, making food. Would crash super hard throughout the day and not even be able to tolerate listening to music.

After about 6 weeks on the diet, I was more or less on top of the chores and able to tutor my sister in statistics. No more crashes; my energy was fairly even throughout the day and declining in the evening as it should.

Then I hit a wall and sort of stopped improving. Recently I cut casein (all dairy) out of my diet and that has helped clear up some of the brain fog. The energy never really gets better than it did after 6 weeks on the diet.

It's also clear to me that the diet was not sufficient to heal my guts or kill the bacterial overgrowth. I'm not sure why. Something is missing.

Anyway, it wasn't a cure for me. At least, not so far. But it helped enough. I would gladly give up sugar and carbs in exchange for this higher level of functioning. Not even a question.

I know it's hard to kick the addiction.

If the idea of never having sugar again depresses your sugar-addicted brain, I recommend this: just commit to going cold-turkey for two months. (If you cheat, you just make it way harder on yourself and prolong the amount of time it takes to kick the habit. On the other hand, depending on your weight and severity of sickness, going cold turkey might be dangerous too. )

The first few days and weeks are the hardest. Once you're over the hump, it gets easier and easier. Your tastebuds adjust and eventually you just don't even want sugar anymore.

It also helps to make sure you've got a happy diet plan in place. Find yummy foods you can eat, like steak or asparagus baked in lemon juice. Don't shop while hungry. Keep only approved foods on hand if possible. Make sure you are well set up for success before you try to quit. Then just don't put anything with sugar dairy or grains etc in it in your mouth.

Seriously, try it.