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The 3 Ps A Closer Look at the Middle One

Messages
38
Location
London, England
Thanks for this Rich. Meanwhile, Curly seems to have found a magic bullet for her intestines which she's offered to the community in case it might help a bit in at least some cases. Pasted here:

"Here you go, Daddy! xxx


Like anyone with ME/CFS, I have a miserable digestive system. Half the time it's completely on strike. The rest of the time it's working overtime and grumbling about it.


What it never has been since I've been unwell, is stable or comfortable - until I started baking my own bread, with a lot of additional fibre.


I was taking linseed/flax seed before, either by eating it (sawdust!) or by sprinkling it on my food, and it had some effect. However, the effect it has when baked into bread is phenomenal, and I now have a gut that works properly every day AND feels comfortable all the time. I don't know why the bread is so much more effective than just taking the linseed was - I suspect it has to do with the linseeds entering the gut already having been soaked, rather than dry - but the difference is so worth the effort, I will never buy another loaf of bread.


One quick note: the recipe below mentions Kamut flour, which is whole grain flour from a very ancient strain of wheat. However, I don't think the type of flour is very important, to be honest. Don't worry if you can't get Kamut. Just substitute some kind of whole grain flour instead.


So without further ado:


Bread to make a miserable intestine into a happy one.


250g Strong white bread flour
250g Kamut flour (whole wheat khorasan grain flour)
1 tablespoon oil (I normally use olive oil, but any oil works)
1 teaspoon sugar
1 teaspoon salt
1 teaspoon quick yeast (I use Dove's Farm).
1 tablespoon whole golden flax / linseed seeds
1 tablespoon crushed golden flax / linseed seeds


OPTIONAL:
For garlic and rosemary bread:
- three large cloves of garlic
- one really big handful of rosemary - just the tender leaves - chopped very finely
- add both these in with the rest of the ingredients
- you may substitute any other herb for rosemary. Thyme, oregano, marjoram


For sesame bread:
- dessert spoon of tahini
- swap the olive oil for sesame oil
- three large cloves of garlic
- a teaspoon of sesame seeds for the dough
- sesame seeds for the top of the loaf


The reason for the garlic is so you aren't tempted to put sweet things onto the fresh bread and eat them! Sweet things seem to slow the gut down and help jam everything up (no pun intended).


METHOD


Of course, having ME/CFS, I am not strong enough to knead the dough sufficiently. You're probably going to use a mixer with a bread hook to do your kneading, the same as I do. Throw all of the dry ingredients and the oil into a bread maker / mixer that has a bread hook, and stir it up while adding enough hand-warm water to make it into a dough. "Hand warm" means "as warm as your hand" - not hot and not cool. I can't give you a precise amount for the water because it depends on the humidity of the day, the type of flour used, and ten thousand other factors. But it's around about 350ml/12oz (just over a half pint). Add it a little splash at a time as the mixer runs. When your dough suddenly "comes together" and forms a single lump, stop adding water - you've got enough there.


I leave the mixer to knead for around ten minutes, during which time I stop the machine three times and "unhook" the dough from the dough hook before immediately restarting it. This forces the machine to twist the dough in a new direction and just gives a better knead. If you're using a breadmaker, it will do this for you.


If you are not using a breadmaker (and I don't), after ten minutes stop the mixer and shape your lovely, elastic dough into a loaf shape and put it on an oiled and floured baking sheet, Cover it with a tea-towel, and put it somewhere warm for 30 mins, or as long as it takes to double in size. I leave mine in front of the open oven door, with the oven on at the lowest possible setting. An airing cupboard or on top of a boiler, or a very sunny windowsill (out of the wind) are good places, too. Treat it like a baby...


Once it has doubled in size, break an egg, whisk it up and brush a little of it over the top of your loaf. Sprinkle a little rock salt and some more linseeds over the top. Bake for about 35 mins, Gas mark 6 (please google if you want Centigrade or Fahrenheit oven temperatures). When it is done, it sounds hollow when you knock it, and it is a perfect, glossy golden brown colour.


TROUBLESHOOTING


- Loaf too crumbly
If you add too much linseed, or sesame seed / tahini (if you are making the sesame loaf), you might get a loaf that is just a bit annoyingly crumbly around the edges. It won't be a big deal, but as you cut it or butter it you'll have to be careful in case bits of crust fall off. This just means you added a bit too much of the optional ingredients - next time use a few fewer linseeds and sesame seeds and tahini.


- Mixer is working its way off the worktop / is just throwing the dough around / is going too fast / doesn't seem to really be mixing or kneading the dough / broke its dough hook / sounds as if it might explode.
Bread is one of those things that needs a slow and very strong motor to knead it, and a heavy based machine to withstand the kneading action. If you don't have a breadmaker (which of course are perfectly designed for the job), you need a mixer that is heavy and will go slowly (I use a Kitchenaid). A lot of mixers that advertise themselves as having "dough hooks" in fact tend to not have a slow enough speed or strong enough hooks and just throw the dough around - if your dough is being thrown around at the slowest speed and your mixer is vibrating itself off the worktop, sorry but you probably need to buy a breadmaker! If you are making this in a mixer, make sure you use a bread hook attachment rather than a blade or whisk. It's an easy mistake-a to make-a. You want to see your dough being constantly twisted at a slow and even pace."

Sounds yummy!

stressman.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Wow, what bright bunch of folks we are here ... I mean that sincerely. Look at all the research we've all had to do, trying to get better. Amazing!

I had all my amalgam ("silver") fillings removed about 10 years ago. I didn't improve much until I got a prescription for "Chemet" (brand name) which is what they give kids for lead poisoning. I did do a lot of the more "natural" detox remedies as well, (ALA, MSM, etc.), but no practitioner to help; I was using a book by a dentist.
Anyway, I did get mostly better-- and then a couple years later got sick again. Two reasons, I think. One, we did a major remodel on a house we bought, (chemicals in paint, carpet, new floors, cabinets, etc.) AND I recently discovered that dental crowns often have amalgam in them ... I have several crowns. (You can often see the dark ridge at the edge of the crown.) Anyway, I'll have those removed when I can. ($$$) Meanwhile, I'm taking MSM for my joints, and several of the other supplements-- maybe that's why my memory and brain fog have improved.

One thing's for sure: any future fillings or crowns will be composite or the new ceramic.
Good luck to everyone ....

Hi Emmaunelle,

CROWNS HAVE NO AMALGAM, no mercury, in them. They would kill the lab technician melting the crown metal if they did. http://www.history.com/videos/pawn-stars-death-clock
such as why it was so dangerous to make these clocks with the gilding of gold left after burning off the mercury. There is no need to remove porcelain over metal crowns. THEY HAVE NO MERCURY.
 
Messages
38
Location
London, England
Hi everyone - Week 18 of the Se detox phase. Curly doesn't want to add anything else until her "traditional" relapse time of September.

Curly continues to gain weight, having gone through a short phase a few months back where she lost a bit. She's still struggling to find a diet that's right for her, the most recent one being copious amounts of low GI veggies. Her problem with that was that the glucose was obviously getting mopped up and stored faster than it was supplied, leading to the need for a sugar fix from time to time. She went through a much more severe form of this two years back with many more symptoms than currently. We had her on liquorice tea and everything else under the Sun at that time. The disturbed HPA axis was not providing enough cortisol to control the insulin, which then mopped up all the glucose and stored it as fat before the body had a chance to use it for energy, we concluded.

All this brings me to an interesting observation which dates back several years before the precipitation of the CFS. Back in '03 she and her sister both got interested in the Atkins diet (which started me on it - I've never looked back). However, instead of reacting as most people do, Curly got very distressingly ill and had to come off it sharply after only a few days, the several times she tried it.

So it seems to me that she's had a block on her gluconeogenesis (GNG) cycle whereby the liver creates glucose from protein in the absence of carbs. I think the body normally prefers the protein path. It is known that insulin inhibits GNG, among other things. I've not read anything to date about this occurring in CFS, however. Has anyone else had this? If so, any fixes?

Hasta la proxima vez,

stressman
 

juniemarie

Senior Member
Messages
383
Location
Albuquerque
Just a thought, but I would check out the low oxalate diet (LOD) There is a yahoo group owned and moderated by oxalate researcher Susan Owens.
 

richvank

Senior Member
Messages
2,732
Hi everyone - Week 18 of the Se detox phase. Curly doesn't want to add anything else until her "traditional" relapse time of September.

Curly continues to gain weight, having gone through a short phase a few months back where she lost a bit. She's still struggling to find a diet that's right for her, the most recent one being copious amounts of low GI veggies. Her problem with that was that the glucose was obviously getting mopped up and stored faster than it was supplied, leading to the need for a sugar fix from time to time. She went through a much more severe form of this two years back with many more symptoms than currently. We had her on liquorice tea and everything else under the Sun at that time. The disturbed HPA axis was not providing enough cortisol to control the insulin, which then mopped up all the glucose and stored it as fat before the body had a chance to use it for energy, we concluded.

All this brings me to an interesting observation which dates back several years before the precipitation of the CFS. Back in '03 she and her sister both got interested in the Atkins diet (which started me on it - I've never looked back). However, instead of reacting as most people do, Curly got very distressingly ill and had to come off it sharply after only a few days, the several times she tried it.

So it seems to me that she's had a block on her gluconeogenesis (GNG) cycle whereby the liver creates glucose from protein in the absence of carbs. I think the body normally prefers the protein path. It is known that insulin inhibits GNG, among other things. I've not read anything to date about this occurring in CFS, however. Has anyone else had this? If so, any fixes?

Hasta la proxima vez,

stressman

Hi, stressman.

I think you are correct about the disturbed HPA axis producing insufficient cortisol in ME/CFS, and this impacting the glucose control. The main driver for gluconeogenesis by the liver is normally cortisol. Hypoglycemia is very common in ME/CFS, and I think that is the reason.

It's very tricky to find an appropriate diet in ME/CFS. I think the reason is as follows: Certain organs, tissues and cells have partially blocked mitochondria, primarily because of glutathione depletion from a variety of causes, depending on the particular case. These organs include the skeletal muscles, immune system cells, certain glands, and to some extent the nervous system. Others, especially the vital organs, do not become as depleted in glutathione during this bodywide scarcity, because they have a complete transsulfuration pathway and are thus able to convert methionine to cysteine, which is the rate-limiting amino acid for making glutathione. So they are better able to provide for themselves, with the happy result that life is preserved, though not nearly as pleasant as one would like it to be! These protected organs include the liver, kidneys, pancreas, intestine, lens of the eye, and to some extent, the nervous system.

What makes choosing a diet tricky is that all the organs, tissues and cells are fed by the same digestive system and served by the same circulating blood. The brain primarily uses glucose as its fuel. Because the HPA axis is dysfunctional, the blood glucose level tends to drop, causing the person to go for a sugar fix in response to an alarm from the brain. However, when the glucose level in the blood comes up, it is supplied at a faster rate than can be used by the body as a whole, mainly because the skeletal muscles represent such a large fraction of the body's total cellular mass, and they have partially blocked mitochondria. Thus, the blood glucose level rises too high, the pancreas responds by raising insulin, and the excess glucose is then converted to stored fat by the liver and the adipocytes, causing weight gain and overshoot of the control system, which is now not well matched to the debilitated system it is trying to control. This overshoot drops the blood glucose level too far, causing the person to go for another sugar fix. And so on.

One possibility would be to go for starch rather than sugar. Starch is broken down to sugar by amylase, but it's a relatively slow process, because amylase can attack only at the ends of the starch molecule's polymeric structure. This feature of starch digestion has been used to maintain the blood glucose level overnight during sleep for children who are diabetic.

In the longer term, the solution has to be to correct the glutathione depletion by lifting the linked partial methylation cycle block, which in turn should correct both the mito dysfunction and the HPA axis dysfunction. I might mention that Dr. de Meirleir believes alternatively that the HPA axis dysfunction in ME//CFS is caused by substances produced by bacteria in the gut. I think he has implicated D-lactate or hydrogen sulfide or both as causing problems in the hypothalamus. He may be right about this. I am finding that there are so many interactions between the partial methylation cycle block and the gut issues in ME/CFS that I think they need to be treated pretty much simultaneously, so that one will not continue to drag the other down. I hope this helps. Regards to Curly.

Best regards,

Rich
 

richvank

Senior Member
Messages
2,732
That's an absolute wiz of a post Rich, thanks! I'll copy and paste it to Curly.

All the best,

stressman

O.K., stressman.

On the starch, I forgot to say that I meant uncooked starch. That's important, to minimize the number of "free ends" on the starch molecules. If Curly isn't allergic to corn, corn starch should be o.k.

Best regards,

Rich
 
Messages
38
Location
London, England
Thanks for this Rich. Can you recommend a palatable form of uncooked starch? Curly and I have been scratching our heads over this.

Meanwhile, I recently got her on glucose tablets rather than sugar, the latter containing fructose which is getting some bad press at the moment (YouTube "Lustig sugar" - 1 hour lecture). Also, not only to assist the sugar-induced depletion, but also to help regulate the blood sugar I've got her on chromium picolinate 200 g/day. As with the Se and her own patent bread (earlier post), she has found this very helpful.

Curly's sister, who also manifested the same bad symptoms when trying Atkins, has now been told by her doctor that she is experiencing "micro-bouts of CFS". I've banged her on a protocol of which more this coming weekend.

stressman
 

Vegas

Senior Member
Messages
577
Location
Virginia
Thanks for this Rich. Can you recommend a palatable form of uncooked starch? Curly and I have been scratching our heads over this.

Meanwhile, I recently got her on glucose tablets rather than sugar, the latter containing fructose which is getting some bad press at the moment (YouTube "Lustig sugar" - 1 hour lecture). Also, not only to assist the sugar-induced depletion, but also to help regulate the blood sugar I've got her on chromium picolinate 200 g/day. As with the Se and her own patent bread (earlier post), she has found this very helpful.

Curly's sister, who also manifested the same bad symptoms when trying Atkins, has now been told by her doctor that she is experiencing "micro-bouts of CFS". I've banged her on a protocol of which more this coming weekend.

stressman

I actually used uncooked corn starch when my reactive hypoglycemia suddenly became severe two years ago. I read the studies trying to find something that would deliver sustained release glucose and was desperate to control the b/s fluctuations, which in retrospect were caused by rapid mobilization of mercury. I couldn't stabilize my b/s and went so far as to try T2 diabetic meds, which helped a little. Of course reactive hypoglycemia is not typically reflective of hyperinsulemia. It more commonly affects people with very lean body mass. I was very lean, very athletic, had no family history, and I was found to be extremely sensitive to insulin. It's the grossly elevated epinephrine in combination with low cortisol that causes so much trouble...although I'm sure the dysfunction of the Kreb's cycle & mitochondrial impairment is at the heart of these hormone abnormalities as has been postulated by RVK.

I don't think I would recommend corn starch even though it will deliver a low glycemic load over the course of many hours. If you want to do it at night until the b/s stabilizes that is probably fine, but based upon suspicions of intestinal permeability you probably don't want to give her too much corn. You have to mix it water very thoroughly...not easy to get a good consistency. Don't take that stuff in dry or you will choke.

I would recommend chromium polynicotinate instead of chromium picolinate. Consider doubling the dosage as well. Eating 6 or so small meals is critical.

Actually, if you already suspected metal toxicity, and you have another daughter with similar symptoms after starting an Atkins diet, I think you have to be looking more seriously at dealing with the metal now. I would not make any major dietary changes until you address this. Getting sick on low carb is exactly what happened to me. If she is losing weight, I would be especially concerned about mobilizing metals. Don't make the situation worse.
 
Messages
25
Thanks for this Rich. Can you recommend a palatable form of uncooked starch? Curly and I have been scratching our heads over this.

My husband eats routinely cooked(as in a porridge ) cornmeal or cooked rolled brown rice flakes for brekkie. They last him til lunchtime (he is off gluten, has been eating this for over ten years with rice milk). cooked I know.
I eat either cooked(as in porridge) or uncooked rolled oats(as in home made muesli).

I just use a bit of milk, but I did use some whey (made up a great whey from the US based on whey concentrate derived from unpasteurized milk ?) and that was great but not something I could afford to do , also tried a colustrum based whey product in Oz which was also great inplace of milk. These (and the strawberries, watermelon etc) gave me some glutathione precursors in a healthy way. Some girls use cream or part cream to stop their blood sugar rising too fast, but I'm unsure about that...tastes great though and its something I recall feeling good on as a young teenager.

Also wondering if your daughter has any of these symptoms (which seem to be mostly female?)

I don't agree with the latest fad re antifructose, but I do agree that fructose by itself is a bad thing, especially in HFCS which is where they are mostly targetting(used a lot in the US). and sugar itself is not a great thing to take, but then neither is glucose.

Fructose in whole fruit , personally, I think is a great way of raising blood sugar fairly fast. Oranges are good(and supply folate and potassium). Bananas too (but about half at a time is about my sugar limit-one third is fine). To get blood sugar up fast maybe you could just take a very tiny piece of glucose and dissolve in mouth until you fix up the problem with something better ? I think locally produced HONEY would be better though in many ways!
Then eat something like fruit or other carbs for most of the glucose you need. I also need some glucose and went extremely badly on a whole grain pritikin diet years ago. I need the protein too- a balance of veges, fruit and protein, but the brekkie does fill a void and is fairly easy(convenient and requiring little effort), so maybe I do need some of the grains too..however I'd probably be better without as in Vanuatu.
When in tropical countries like Vanuatu, I picked up a lot by eating coconuts and bananas and real fresh fish and steaks and veges as well as real organic eggs( they fence off the house-chickens roam thru jungle...)!
brekkie was mainly some coconut and half a banana?..that would be a good blood sugar pickup, but I cant get nice fresh coconuts in sydney(the milk and the white inside made me feel really good , just require a tomohawk!

My husband (and other guys all over 60 who tend to go hypo in the afternoon),and also seem to be low on RBC folate strangely enough (I mean single digit readings), all seem to do well on dates (you can buy some in Oz which are just dates, no preservatives if you look) . I like dates too, but it still doesnt seem enough, so at times I still hit the sugar. Note-chocolate works real well BUT the next day I pay for it by being wiped..I just worked out this bis a histamine reaction I think?

I think Rich's post re the vicious cycle in reactive hypo is great too...it sounds just like me. (diagnosed reactive hypoglcemia about 30 years ago). I was told at the time it will progress to diabetes 2. It didnt. I tried the 6 meals a day for many years(over a decade), but that , I believe is not the way to go., and may have progressed to diabetes 2 if continued. I think we need the period of lower sugar, just not too low. The low cortisol from the stress is, I believe, the culprit here as you have worked out.

Exercise helps (I know tolerance level), but it does..and exercise before eating(as in the morning before brekkie / or fasting for those that can wake up!) raises growth hormone* which helps when/if able to do this, but after eating or even AS eating as well as after stops that spike from going as high and gets it down faster. Exercise also induces thyroid hormone release which helps with the digestion -eating also induces this, which is one reason why we usually feel a bit better(and a bit warmer) after a meal
*which is why 6 meals a day doesnt work too well as this doesnt happen
 
Messages
90
Location
Sydney, Australia
Thanks for this Rich. Can you recommend a palatable form of uncooked starch? Curly and I have been scratching our heads over this.

Meanwhile, I recently got her on glucose tablets rather than sugar, the latter containing fructose which is getting some bad press at the moment (YouTube "Lustig sugar" - 1 hour lecture). Also, not only to assist the sugar-induced depletion, but also to help regulate the blood sugar I've got her on chromium picolinate 200 g/day. As with the Se and her own patent bread (earlier post), she has found this very helpful.

Curly's sister, who also manifested the same bad symptoms when trying Atkins, has now been told by her doctor that she is experiencing "micro-bouts of CFS". I've banged her on a protocol of which more this coming weekend.

stressman

Hi Stressman,

I started a low carb diet around 3 months ago, and I found that all my symptoms graduallly deteriorated. As I was also being treated for candida, I wasn't even having fruit. I was extremely careful about including high quality protein and lots of low GI vegetables. Before starting, I rated myself at 3 on the Bell Scale, but after 3 months I was a 2.

In the past 2 weeks, I've started dissolving glucose tablets under the tongue periodically throughout the day, and I now consider that I'm back to a 3. I'm also taking chromium polynicotinate. I, like your daughter, apparently have a problem generating glucose from protein, and I also found that I seemed to have an inflammatory response to plant based fats, which were supposed to be an alternate source of energy.

I persisted far too long on this diet as I believed that my bad reactions were due to either detox or changing to a fat burning metabolism. I haven't come across many others who react this way, but it has been very detremental to me.

I have since learned to listen to my own body, rather than adhering to theories which are supposed to work.

Best wishes,

Sandra
 

richvank

Senior Member
Messages
2,732
Thanks for this Rich. Can you recommend a palatable form of uncooked starch? Curly and I have been scratching our heads over this.

Meanwhile, I recently got her on glucose tablets rather than sugar, the latter containing fructose which is getting some bad press at the moment (YouTube "Lustig sugar" - 1 hour lecture). Also, not only to assist the sugar-induced depletion, but also to help regulate the blood sugar I've got her on chromium picolinate 200 g/day. As with the Se and her own patent bread (earlier post), she has found this very helpful.

Curly's sister, who also manifested the same bad symptoms when trying Atkins, has now been told by her doctor that she is experiencing "micro-bouts of CFS". I've banged her on a protocol of which more this coming weekend.

stressman

Hi, stressman.

Sorry, no, I don't know of a palatable uncooked starch. Maybe something could be added to uncooked starch that would help the palatability of it, without causing other problems. I just don't know.

I recently heard Robert Lustig give a talk at the Orthomolecular Health Medicine Society meeting in San Francisco. I had watched his YouTube presentation before that. He repeated much of the same material, but the take-home message from this more recent talk was that the problem with high-fructose corn syrup is not that it is particularly toxic as compared to sucrose, which is also half fructose, but rather that it is so cheap. As a result, the soft drink producers and processed food producers are able to put a large quantity of it into one serving, and still price the product so that it will sell and return them a tidy profit, and this has raised the average consumption, resulting in the health problems.

I'm glad that the glucose tablets and chromium are helping.

Sorry about Curly's sister's symptoms. I hope the protocol you mentioned will help her. I wonder if there is a genetic issue involved. I note that Dr. Amy Yasko has found that the VDR Fok polymorphism in the vitamin D receptor protein can impact the control of blood glucose level.

The following is somewhat unrelated, but I want to pass it on, in case it might become useful to you or others. I'm 69 years of age, and in the past year or so began having my blood glucose level creep up into the so-called "prediabetic" range. I also noted that my feet began feeling sort of strange, partially numb, during the night and in the morning upon arising. I began to suspect that these were connected, as diabetes can do unpleasant things to one's feet, involving blood circulation and neuropathy, ulcers that are unnoticed, sometimes leading to amputation, which I would prefer to avoid! I heard an interesting talk by Dr. Tapan Audhya, also at the OHM meeting, about use of dichloroacetate (which is used to treat mitochondrial disease and more recently from work by Dr. Michelakis at the University of Alberta in Canada looks as though it will work against cancer) to promote activity of the pyruvate dehydrogenase complex. This is the complex that transforms pyruvate, from processing glucose through the glycolysis chain, into acetyl-CoA, for entry into the Krebs cycle. Apparently in a number of diseases, including mito diseases, cancer, Alzheimer's and diabetes, there is a problem in this complex in various types of cells. This drew my attention to trying to assist this complex by giving it more of the nutrients it is known to need. These are magnesium, lipoic acid and B-complex vitamins. I started supplementing these, and for good measure through in acetyl-L-carnitine, which supplies acetyl groups as well as carnitine, the usher into the mitochondria for the fatty acids. And I added some chromium to help with glucose transport into the cells.

Well, I'm happy to say that this does stop the neurological sensations in my feet. I hope to get a blood glucose test soon to see if it has been lowered, but I am optimistic about this.

In the past, I had thought that the problem with diabetes involved getting glucose into the cells, but now it appears that the problem could be further on, at least in some cases, involving the pyruvate dehydrogenase complex. I had tried taking chromium, vanadium and cinnamon in the past, but that didn't seem to be effective in lowering my glucose level. No doubt a strict diet would do it, but I would prefer not to have to do that if I can correct this with nutritional supplements.

Well that was a digression, but maybe of some interest in connection with glucose issues in general.

Best regards,

Rich
 
Messages
38
Location
London, England
Thanks everyone for your fascinating posts. I'm learning as I go along and every bit helps!

So to Curly's sister, let's call her Kass (she'd like that). Well, this thread is about the middle P, precipitation, and now I'm faced with a real case of it. What I've done is banged Kass straight onto NAC 600 mg (couldn't get a smaller cap at short notice, she takes it in the middle of a heavy protein meal), A, C, E and Se (400 g for the first week only, now 200) and a big fat B complex. I'm watching points like a hawk. Kass responded immediately and is currently tired "but not at all fatigued daddy - that's totally different" (her legs had stopped working). I'm looking to possibly replace the B6 with pyridoxal-5-phosphate and the B12 with sublingual hydroxycobalamin - no decision yet.

Kass came in via four months' IBS of which I was unaware at the time. She doesn't mention any viral symptoms, but the tiredness might point that way. We get her blood test results this coming Tuesday.

On the genetic bit, perhaps I've got a lot to answer for...

stressman

Edit: Forgot the niacin! Given as no-flush niacin, as a vasodilator to transport the oxygen from the squalene, which I also forgot. Kass is doing fine still, although tired.

On no-flush niacin (inositol hexanicotinate) there is some debate, but Dr Atkins used it to good effect over the years. 'Nuff said. I suspect that it's the metabolites rather than the niacin direct that benefit the patient, though I might be wrong on this.

stressman
 
Messages
38
Location
London, England
Rich - Firstly, I'm glad your symptoms have tamed down! I didn't realise you are three years older than I am, I'd always pictured you as a 30-something young go-getter. Just shows you what we oldies can do...

Do I take it correctly that you are now using DCA? I got interested in it several weeks ago and later found your earlier posting on it from this forum.

Curly news - still quick crashes followed by equally quick recoveries. She flew to Belfast this last weekend for a friend's wedding, I expect our first phone call tonight, following her return last night. Fingers crossed.

Kass news - still fine but energy up to only about 75% from 20% earlier (her figures). At the moment I assume that is either toxic, viral or mitochondrial. We've got some ALA on the way for the first, the Se might help for the second but monolaurin is on its way. The latter didn't help Curly's EBV though. If mitochondrial, well, we'll see.

stressman
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Rich - Firstly, I'm glad your symptoms have tamed down! I didn't realise you are three years older than I am, I'd always pictured you as a 30-something young go-getter. Just shows you what we oldies can do...

Do I take it correctly that you are now using DCA? I got interested in it several weeks ago and later found your earlier posting on it from this forum.

Curly news - still quick crashes followed by equally quick recoveries. She flew to Belfast this last weekend for a friend's wedding, I expect our first phone call tonight, following her return last night. Fingers crossed.

Kass news - still fine but energy up to only about 75% from 20% earlier (her figures). At the moment I assume that is either toxic, viral or mitochondrial. We've got some ALA on the way for the first, the Se might help for the second but monolaurin is on its way. The latter didn't help Curly's EBV though. If mitochondrial, well, we'll see.

stressman

Hi Stressman,

I want to let you know that adb12 (dibencozide), Metafolin and l-carnitine fumarate with alpha lipoic acid aiding the process, work very well for getting the mitochondria working though it might feel like there is some overshoot, the body rapidly turns it back to normal feeling. However, don't overdo it. You have no more capacity than you did the day before. That has to be earned with exercise and very slowly building up at first.
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Freddd - thanks for the info and the warning! I'm straight off now to Google the adb12, I've never heard of it before.

stressman

Hi Stressman,

Adb12 (adenosylcobalamin) is also commonly called Dibencozide or cobalamide. The two main sublingual brands are a 3mg Country Life with (unfortunately) folic acid and is definitely 5 star for absorption and effectiveness. The other brand many of us are trying is Source Naturals 10mg. I am going to do the last part of the comparative testing and will have a rating for it soon.
 
Messages
38
Location
London, England
I look forward to that test result Freddd. I found the Country Life stuff on iHerb, a site I use very often. It's cheaper and quicker for me in the UK to buy from iHerb in most instances. That's the famous American service in action!

How universal would the objection to folic acid be, or does that apply only to certain subsets? I'm still on a vertical learning curve on most of this. I am aware of the Yasko protocol though, but fuzzy as to all the reasons behind her exact choices of nutrients.

stressman
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
I look forward to that test result Freddd. I found the Country Life stuff on iHerb, a site I use very often. It's cheaper and quicker for me in the UK to buy from iHerb in most instances. That's the famous American service in action!

How universal would the objection to folic acid be, or does that apply only to certain subsets? I'm still on a vertical learning curve on most of this. I am aware of the Yasko protocol though, but fuzzy as to all the reasons behind her exact choices of nutrients.

stressman

Hi Stressman,

How universal would the objection to folic acid be, or does that apply only to certain subsets?

That is an unknown at this time. However, I would not be surprised at all if it is very common in the CSF/FMS/ME group. It could even be a root cause for collapse of the methylation system. This is something we have been considering for only a couple of months and the understanding is changing rapidly. For those affected indicators could be any and all folate and b12 deficiency symptoms. It is often episodic. The rapidly appearing symptoms include but are not limited to IBS, angular cheilitis, allergies, asthma, edema, MCS, acne type lesions, infected follicles, increased inflammation throughout the body , nausea, fatigue, personality and mood changes and so on.

For me, the cheilitis appears within 3 days of onset and also is the first to start improving upon correction.

I appear to be able to tolerate one dose per week of even 51mgs of Country Life Dibencozide. The turnover of adb12 in the mitochondria is slow. The easiest way to tell is a Metafolin trial and eliminating folic acid, folinic acid, various folates and folinates and for some people even limiting exposure to vegetable food source folates. Further, whey, NAC and/or glutathione can also cause a form of folate deficiency. I eat fresh green leafy veggies every day. However, I now don't have both a salad AND chard for instance. I also take 1600mcg of Metafolin with each meal as well as 3 other doses of 1600-2400mcg per day. I have found that 800mcg at a meal and 2400mcgx3 per day doesn't stop the folate deficiency but 1600mcg at the meal does.