ketogenic diet and PDCD or PDH

[Guest guest]

Hi Sunny, I'm on a " modified " ketogenic diet now because too

many

concentrated proteins were too hard on my kidneys. The carbs I

get are all from nuts and seeds, except for 1/2 a Granny

Apple in the morning and a tiny bit of unsweetened carob.

Anything much more than that causes a predicatable and SWIFT

increase in ALL my usual mito-type symptoms: from

CRUSHING fatigue, all-over pain, headache, and muscle

weakness; all the way to jerks, tremors, ataxia, heart distress

and periodic paralysis episodes. I've been on the ketogenic diet

in some form for about a year. For me, there has been a

substantial decrease in the majority of symptoms that I can trace

directly to the diet.

I don't know much about the more " common " forms of mito, but it

appears that my reaction is relatively NORMAL for the rare kind I

probably have.

Hope you can find the perfect diet that works best for you.

Best Wishes,

Anita

(probably thiamine responsive Pyruvate Dehydrogenase

Complex Deficiency ( PDCD) or PDH and currently working on

getting a firm diagnosis)

> > > > Thanks for the info.   I guess I never suspected that.  Will

> > have

> > > to take

> > > > that into account with the insulin.

> > > >

> > > > Janet Sample

> > > > all Qgel contain sorbitol or xylitol

> > > >

> > > >

> > > > >

> > > > > I just contacted epic 4health because I want to try

QGel.  I'm

> > > > > devastated to find out that all their products either have

> > > sorbitol

> > > > > or Xylitol (a sugar alcohol) in them, even the gel caps,

even

> > the

> > > > > sugar free gel caps. I just can't believe it. You'd think

they'd

> > > make

> > > > > ONE that people with carb intolerances, or who are on

> > ketogenic

> > > > > diets could take! Heck, if I wanted to eat carbs I'd eat

ice

> > > cream,

> > > > > not QGel!

> > > > >

> > > > > Thanks for letting me vent!

> > > > > Anita

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > Medical advice, information, opinions, data and

statements

> > > contained

> > > > herein are not necessarily those of the list moderators.

The

> > author

> > > of this

> > > > e mail is entirely responsible for its content. List

members

> > are

> > > reminded of

> > > > their responsibility to evaluate the content of the postings

and

> > > consult

> > > > with their physicians regarding changes in their own

> > treatment.

> > > > >

> > > > > Personal attacks are not permitted on the list and

anyone

> > who

> > > sends one is

> > > > automatically moderated or removed depending on the

> > severity of the

> > > attack.

> > > > >

> > > > >

[Guest guest]

Thank you, Anita

I am glad to hear that the diet gives you substantial relief. Did you

discover it on your own, or did your diagnosis point to it? If it was

diagnosis, what tests were done to confirm it?

I will continue to experiment. Are you sure ALL carbs lay you low?

For me, it seems " straight " carbs (like bread, etc) do it more than

the carbs in milk, soy, and fruit . I am not sure yet. My symptoms

are so variable, and it is hard to relate it completely to what I do or

eat. Some hours or minutes I feel absolutely fine, and think " I am all

better....I am normal!!! " and 2 minutes or 2 hours later I can

hardly do a thing.

Also, what sources are you using to idenfify " no carb " foods?

Besides looking at food labels, the best source I have found is a few

pages in Atkins and the South Beach Diet. I am hitting nuts and seeds

more, as well as tofu and soy products, eggs (usually only whites), and

dairy. But I like yogurt, skim milk, etc, which all have some carbs

in them, and I do have several servings of fruit and unlimited

vegetables of the non starchy types.

I appreciate your taking the time to share your experience.

Regards

Sunny

> Hi Sunny, I'm on a " modified " ketogenic diet  now because too

> many

> concentrated proteins were too hard on my kidneys. The carbs I

> get are all from nuts and seeds, except for 1/2 a Granny

> Apple in the morning and a tiny bit of unsweetened carob.

> Anything much more than that causes a predicatable and SWIFT

> increase in ALL my usual mito-type symptoms: from 

> CRUSHING fatigue, all-over pain, headache, and muscle

> weakness; all the way to  jerks, tremors,  ataxia, heart distress

> and periodic paralysis episodes. I've been on the ketogenic diet

> in some form for about a year.  For me, there has been a

> substantial decrease in the majority of symptoms that I can trace

> directly to the diet.

>

> I don't know much about the more " common " forms of mito, but it

> appears that my reaction is relatively  NORMAL for the rare kind I

> probably have.

>

> Hope you can find the perfect diet that works best for you.

>

> Best Wishes,

> Anita

> (probably thiamine responsive Pyruvate Dehydrogenase

> Complex Deficiency ( PDCD) or PDH and currently working on

> getting a firm diagnosis)

>

>

>

>

>

>

>

> > >  > > Thanks for the info.   I guess I never suspected that.  Will

> > >  have

> > >  > to take

> > >  > > that into account with the insulin.

> > >  > >

> > >  > > Janet Sample

> > >  > > all Qgel contain sorbitol or xylitol

> > >  > >

> > >  > >

> > >  > > >

> > >  > > > I just contacted epic 4health because I want to try

> QGel.  I'm

> > >  > > > devastated to find out that all their products either have

> > >  > sorbitol

> > >  > > > or Xylitol (a sugar alcohol) in them, even the gel caps,

> even

> > >  the

> > >  > > > sugar free gel caps. I just can't believe it. You'd think

> they'd

> > >  > make

> > >  > > > ONE that people with carb intolerances, or who are on

> > >  ketogenic

> > >  > > > diets could take! Heck, if I wanted to eat carbs I'd eat

> ice

> > >  > cream,

> > >  > > > not QGel!

> > >  > > >

> > >  > > > Thanks for letting me vent!

> > >  > > > Anita

> > >  > > >

> > >  > > >

> > >  > > >

> > >  > > >

> > >  > > > Medical advice, information, opinions, data and

> statements

> > >  > contained

> > >  > > herein are not necessarily those of the list moderators.

> The

> > >  author

> > >  > of this

> > >  > > e mail is entirely responsible for its content. List

> members

> > >  are

> > >  > reminded of

> > >  > > their responsibility to evaluate the content of the postings

> and

> > >  > consult

> > >  > > with their physicians regarding changes in their own

> > >  treatment.

> > >  > > >

> > >  > > > Personal attacks are not permitted on the list and

> anyone

> > >  who

> > >  > sends one is

> > >  > > automatically moderated or removed depending on the

> > >  severity of the

> > >  > attack.

> > >  > > >

> > >  > > >

[Guest guest]

Hi Sunny, You sound like you're doing some great experimenting

and finding out what diet works best for you. I found it took me a

long time for a recogniseable diet/symptom patterns to emerge

and I hope they do for you soon. Not being able to see a clear

" cause and effect " dietary pattern must be very frustrating for you.

I kept a food /symptom journal for a long time. I think the Atkins

and South Beach (as you mentioned) are probably great

resources. I have a nutritional manual book that's as old as the

hills that helped me in the begining. The advent of Adkins is

probably making access to low carb info and low carb products

much easier. I know there is some great info on the web.

I have gotten just about ALL my health knowledge and medical

diagnosis from the " back door way in " . I have had to discover

most everything on my own because all my doctors and

neurologists had basically given up on me. Once I did all the

hard work and told my docs what I suspected, little by little the

tests have come to prove what I suspected. We are now on the

last legs of getting a definitive diagnosis.

To answer your question you have to know a little about my

health history. Probably more than you want to know, but I can't

really answer your questions without it.

Over the course of about 16 years I had 3 functional thiamine

(vitamin B1 ) /transketolase tests that showed extremely low

levels of thiamine, in spite of a great deal of oral

supplementation. The 4th time the test was done it showed

similarly low levels, even though I had been on 30 mg imjectable

of thiamine 2X at the time. After doing a huge amount of reading

I discovered that thiamine-responsive PDCD (which also seems

to be called PDH) fit my bizarre and very transient symtoms to a

" T " . From there I finally discovered that PDCD was categorised

as one of the rarer mito disease. All this took about 16 years to

put together. Once I discovered the mito connection and the

good folks on the mito newsgroups, I have discovered one other

person with first hand knowledge of the disease and the

symptoms are amazingly, bizarrely similiar.

I found out by experimentation that the ketogenic was the only

diet that worked for me (a far cry from the high carb, no animal

protein, whole food, organic vegan diet I had been following for

25 years.) Then several months later I discovered more info on

PDCD and I was FLOORED to find that the ketogenic is thought

to frequently be the diet of choice for PDCD.

Yes, ALL carbs in all but miniscule amounts (so far) do " lay me

low " . I haven't eaten flour (bread) or sugar in 25 years, anyhow,

because I knew they didn't work for me (OK, maybe once a

year:-) Maybe my body was " smart " even then. I absolutely can't

manage grains, starchy vegies, soy and Dairy at all. Fruit a little

bit. FYI, my blood sugar is usually between 70-110, so diabetes

doesn't seem to entre into the picture here.

I did initially find that eating carbs with protein or fat seems to

diminish the negative effect a little, maybe because it slows

down the metabolism (don't really know). I have also found that

the carbs in fruit seem a little less destructive for me than those

in grain/starch vegies. However, I'm so much better on the diet

that I no longer go off it......or haven' t for about a year.

Here's hoping that you can come up with a diet that really works

for your symptoms.

Best Wishes,

Anita (probably thiamine responsive PDCD/PDH and currently

working to get a definitive diagnosis)