Re: Reactive Hypoglycaemia & ME

[Guest guest]

,

No it was not me – I have never posted before.

First question have you ever had a Glucose Tolerance Test?

See http://www.webplace.ca/hg/5hrtst.html for a full description of

what it entails – please note it cannot be done with a single point

measurement of blood sugar level – my wife had many and they all came

up normal.

During the 7 years my wife was diagnosed with Candida on a number of

occasions and went on low yeast/carbohydrate diet – all of which did

make her feel better but never solved her problems completely – I

think the improvements had nothing to do with Candida but the low

sugar must have agreed with her!

She is a confirmed Reactive Hypoglycaemic sufferer and is on a diet

which is extremely low in carbohydrate - she is very sensitive to

carbohydrates eg. we did go onto brown rice about 6 months ago - it

made her very ill. The reason being (in my opinion), the skin of the

rice held in all the starch. When the body broke down the skin there

was a sudden rush of CH into the system causing the sudden release of

excess insulin causing low blood sugar (I can explain Reactive

Hypoglycaemia if you need it).

We have found through trial and error that the only two forms of CH

she can take is:

1) Well washed boiled white rice

2) Plain Natural Brown bread - not high malt types

If you have not had a Glucose Tolerence Test I would ask for one - it

could be the main cause of your illness - if the test is negative you

have not lost anything!

By the way, treating RH by diet is very difficult to achieve and even

now my wife will fail to control the blood sugar level and will need

a day to get them under control. Please note – if you are RH then you

cannot chose to be on or off the diet – it is for life! If you stray

you will be ill for a couple of days, if you stray for long periods –

ME symptoms will return and your life will go with it's return.

The important principals are:

1) Low sugar diet - to start with drop virtually all except washed

white rice (without a small amount of CH you will get low blood sugar

level!)

2) Eat small and often (every 2-3 hours)

3) Have snacks on hand to raise level if you feel the low sugar

symptoms (couple of nuts, breadstick, etc...)

4) Do not do too excessive exercise - gentle swim or walk (your days

of marathon running are over)

5) Go to bed with a glass of milk (ensures enough sugar to sleep

through the night)

6) Don't make any changes in the first 6 months - it will take that

long for the body to calm down

7) Don't eat anything out of a packet

8) Take advice from dietician with a pinch of salt - I walked out on

the 'textbook' answer we were given for treatment of RH - it would

not have worked

9) The main aim of the diet is to never have a medium increase in

sugar in the system (small meals, eating every 2-3 hours) and to not

let the sugar level drop too much (many snacks throughout the day) -

i.e. have to keep your bodys sugar level between maximum and minimum

level - this can only be done through food - a very difficult trick

to perform.

I think one of the problems (experience by us) is that the diet does

not seem to work for the first 3-6 months, at which point you start

questioning whether it works. Also you want to give yourself a little

treat, etc... at this point you end up back at first base! It must be

persevered with as it does work.

Specifics for my wife are as follows:

It took six months to start to see real recovery and now two years on

she has a relatively normal life - although can get tired by the end

of the day. Once we got a recovery she could reintroduce various CH

to see which ones affected her (now she can have a very weak whiskey

and water at night!).

To give you an idea of her diet:

Morning 7am - Two pieces brown toast with diabetic jam

Morning 10am - Two cheese croissants

Morning 12am - Snack (see below for snack info)

Lunchtime 2pm - Cheese and Ham sandwich, tom, cucumber, breadsticks

Afternoon 4pm - Snack

Afternoon 6pm - Snack

Evening 8pm - Dinner (Plain oven baked Meat/Chicken or Fish, Veg or

Salad, plain washed and boiled rice)

Evening 10pm - Glass of milk and banana

Snacks - Bitter Apple (Granny

)/Banana/Nuts/Breadsticks/Croissant/etc...

NOTE - she has just finished breast feeding our first child (9

months) and still found enough CH to keep her going!).

You may have some other dietary problem and this should not be

overlooked but by cutting out everything you will not know what is

causing the problem. During my wifes 7 years we had diets for both

candida, dairy intolerence & wheat intolerence (all of which were not

necessary!).

Hope this helps.

Also please have a go at the questionnaire and see what you score.

Andy

[Guest guest]

>>I would think that after the blood sugar goes up from ingesting glucose, and

the insulin is released, and it goes down, it >>would stay there. How could it

go back above normal by quite a bit?

Bob, I think it is because the adrenals glands register an emergency and are

stimulated into action, setting a series of hormonal reactions into play that

raise the BS quickly. I forget the sequence exactly, but I know that when the

adrenals are stimulated this way they release toxins which IMO may contribute to

the hyperactive feeling that results. At a certain point, the adrenals are tired

of this roller coaster ride, and are too exhausted to have much influence.

That's when the blood sugar stays low, or goes flat. Know the feeling? I am

interested to hear Rich's understanding of this too.

~jeanne

[Guest guest]

Trudy,

Thank-you ever so much for repling to my post - I am encouraged by

the response I have had from this Group - I am trying to stop people

going through the unnecessary suffering experienced by Sophie and

myself over a 7 year period - I know what I have to say will not

fit/suit everyone but I am glad that a few are willing to at least

consider what I have to say.

First comment - Dieticians are not up to speed with the requirement

of a Reactive Hypoglycaemic. Put it this way - if I had listened to

her Sophie would still be ill, we would have rejected RH as a load

of rubbish and probably be divorced (never mind not have a wonderful

8 month old son). In my opinion you need to understand the

principals and work it out for yourself.

Second comment - agreed 100% that every one needs a specific diet

for themselves - one of the problems with dieticians!

Third comment - For Sophie ALL of her symptoms were primary or

secondary effects of the RH. They were not caused by ME/CFS despite

very good symptom match with CFS/ME.

Fourth comment - Please do not think that eating every 2-3 hours

means sitting down to a meal then. Sophie has three smaller meal at

normal time but between meals will have a small snack - once you

have learned to read the body (after 12 months) you will snack on a

need basis rather than a timed basis.

Fifth comment - don't want to comment on a diet for a diabetic as I

am not trained to do so, but if you are diabetic you have no insulin

production then you cannot have low blood sugar level - except by

not eating. RH is caused by excess insulin. Have you had a glucose

tolerance test? I would like to know the result.

Sixth comment - What bowel problems do you have - my wife had

Irritable bowel syndrome, wind, terrible bloating, stomach pain,

etc... she had test after test and nothing proved any problem - as

soon as we solved the RH problem all stomach and intestine problem

went away - she still has a slow bowel but none of the other

problems - I would like to know more info on your problems.

Seventh comment - I agree with your understanding of diet - It is

essential to life - your body has a series of control systems - if

these don't function correctly the whole body system is messed up

causing all sorts of symptoms - I feel that if you have a variety of

untracable symptoms like ME then there is probably one cause - in my

wifes case RH.

Eight comment - My wife has one large cup of coffee every day - we

thought (as advise tells us) that cafeine is bad and she stopped for

years with no improvement in health. Now we know the problem, she

drinks and enjoys every day with no adverse effect on her health -

you make your own decision on this - if she drank more than 1 cup I

don't know what the effect would be.

Ninth comment - If it wasn't for your diabetes I would say be brave

and try to follow a diet close to my wifes - we could help. But

please do not do it if it would make you more ill.

Hope the above helps.

Andy

> Hi Andy,

>

> I really appreciate your sharing this with us. I am diabetic (and

my blood sugars are really out of whack right now) and I bet that it

is related to hypoglycaemia in some way. I haven't studied this out.

>

> In looking at your wife's diet, it would not be something that I

would be able to follow because I find it high carbohydrate. One

thing that I learned is that diet is not like pantyhose, it is not

one size fits all! ;-) When I first saw a dietitian she had me eat

every few hours; however, I found that it really increased my

appetite. I do better with just eating three meals a day. I had

been following the diabetic diet and lost a lot of weight (70 lbs.);

however, while everyone was telling me how good I looked, I still

felt very sick inside. I wound up gaining all my weight back,

because of doctor problems.

>

> I am set to try diet again at the first of 2003. I even talked to

my doctor today to ask him if I could " weigh in " when I come in for

my office visits. And he said, " Absolutely. " So, I went in today

to get my starting weight recorded in my file. I have decided to do

my Scarsdale Medical Diet. For carbohydrates all you are allowed is

one slice of toast per day. (Now you see why I think your diet is

high carb.) One thing is that because of my bowel problems, I

cannot have any milk.

>

> Anyway, I really think that there might be more to this diet thing

than we realize. I noticed that Weston A. Price seems to think it

is very important. Does anyone know about this " Nourishing

Traditions " diet?

>

> http://www.westonaprice.org/askdoctor/ask_chronic_fatigue.html

>

> Dr. Garth Nicolson seems to think that diet plays a very important

role in recovery for people who are chronically ill.

>

>

http://www.immed.org/reports/treatment_considerations/TownsendDietCon

sid.-01.8.6.html

>

http://www.immed.org/publications/treatment_considerations/DietaryCon

sid.-01.6.28.html

>

> BTW, does your wife drink any coffee?

>

> I plan on concentrating on my diet in the new year, as I really

feel that without it I won't be able to make any progress in my

health. Thanks for letting us know that it did take awhile to

notice the results. It is easy to get discouraged and quit too soon.

>

> Kind regards,

> Trudy

[Guest guest]

hi andy,

thanx for all the information it was useful .

but in reality the diet u end up on is very high in protein and very high in

fat ... which is a problem for me with my stomach issues( cannot tolearlte

alot fat) plus many of us have high cholesterol levels .( the way to make

that better/healther is to eat good healthy fats: vegtable oils, nuts , seeds

etc. while avoiding highly saturated fats : butter, avoid fats high in

trans fats ( margerine) and avoid using high fat protein sournces : ie

regular luncehoon meats( plenty low fat ones on market), spare ribs etc. etc.

the reason that whole apple relases its fructose slower than a puree apple

is that the whole apple has fiber.

using a gylcemic index of foods is helpful in choices as suggested by

someone esle.

i am losing weight on this diet(dont need to lose) and eating 4- 6 x day

which is not particallary easy if u have multiple allergies and its hard to

cook , shop and make foods due to low energy.

i was told ur blood sugar is naturally low at 1pm 2pm ish so i push more

protein then .

i cannot tolearte large amounts of fruit so i take very tiny pieces

spaced thruout the day with meals as using them as snacks produces more

hypoglcemic sysmtoms but people do seem to vary in their invidual responses.

i eat as much vegtables as i am comfortable with , even though they

contain carbohydrate as they are usually farily high in fiber which slows

down ablsorbtion.

so i guess i only have another five months till i see results sigh

somish

[Guest guest]

Somish,

First comment - well done with sticking with the diet - a real pain

isn't it!

Second comment - how have you developed the diet, have you done what

you have been told and kept to it or have you found yourself ill

after various meals and tried to identify the suspect and exclude it

the next time you have the meal? We found that some of the things

that were 'safe' were actually wrong for Sophie. In the end a lot of

trial and error has lead to a pretty good diet. It is essential to

eat nothing out of a packet as they always contain things that upset

Sophie. Also sauces are also very bad (especially in a restaurants).

Third comment - We do understand that everyone is different, but if

you want to send us a log of your intake over a week (times/approx

quantities/type) we would be more than happy to give our comments in

relation to what we experienced. Up to you.

Fourth Comment - As for losing weight. Due to realities I virtually

have the same diet as my wife. I am over 6 foot and 95kg and I do not

lose weight. She is small 53kg, but has just managed to complete 9

months of breast feeding without losing weight (although most of the

extra input was through full fat milk, not good for you). I just want

to highlight the fact that one can survive on this diet if you are

careful

Fifth Comment - What carbs do you take? Sophie only takes white rice,

brown bread, breadsticks, plain crackers, small amounts of bitter

fruit (granny smith apples), and now after 16 months very green

bananas. Be careful with rice it needs to be long grain and well

washed also many vegetables contain high carbs (eg. swede, carrots)

they must be taken in moderation (swedes never!)

Sixth comment - What exercise do you do. My wife will never be able

to do intensive exercise. Walking, swimming gently for 30 min or

cycling (carefully!) is about the limit. If you do too much you will

be ill. Treament is not only about keeping the blood sugar level

below the insulin trigger point but also about keeping the level

above the point at which you start to feel ill. It is a real juggling

game and there are limits to your life but with practice anyone can

juggle - it is this practice that takes the 12 months!

Seventh comment - while it may be boring the plain meals are the best.

eg.

Oven baked chicken breast or salmon steak

Small amount of boiled rice

large serving of steamed veg (carrots/leeks/brocolli)

or

Lean steak - fried in veg oil

Small amount of boiled rice

Oven baked veg (pre coated in olive oil)

These can get boring but they have worked for my wife. Note every

meal we have in the evening is served with a helping of rice. If we

do not include that my wife will become ill from lack of Carbs in the

diet (this we have tried many times and each time it has proved

essential to have this).

Hope it all helps rather than confuses.

Stick with it!

Andy

[Guest guest]

All

Talk has now turned to Hypoglycaemia.

Could some people be misdiagnosed with Reactive Hypoglycaemia. This

is very possible.

I found that in my diary I wrote that " it seems like all this

happens after I eat " . Drinking water at a meal caused my symptoms to

esclate. Clean water has almost stopped the esclation of symptoms. I

know no one else here is F- poisoned, but for me,

Could the Hypoglycaemia be the result of fluoride overdose.

hypoglycaemia (low blood glucose

symptoms that usually disappear 10 to 15 minutes after eating sugar

What causes hypoglycaemia?

Too much insulin in the blood

Hypoglycemia should be confirmed by specimens drawn in fluoride tubes

(gray-stopper tubes).

sodium fluoride tube (gray top) - inhibits glycolysis, avoids

consumption of glucose by RBCs

many common foods (such as popular soft drinks) already contain

fluoride. Thus, people living in fluoridated areas who choose to

consume such foods will most likely take in far more fluoride that

the amount deemed safe by scientific estimates.

When common breakfast cereals can contain as much as 10.0 ppm, it is

easy to see how quickly the average person can " overdose " on fluoride.

Fluoride in food could set off quite a reaction that could look like

hypoglycemia and reactive hypoglycemia.

The fact that fluoride has a delayed reaction could account for

people reacting hours after they eat when the inhabition of

glycolysis starts to occur - which could set off a real roller coster

ride of the body trying to come to equilibrium.

People can control hypoglycemia by watching their diet and eating

more often, would this not smooth out the highs and lows?

Ron

[Guest guest]

,

Thanks for the message. It is pleasing to see the visability of RH

being raised as I truly feel that A HIGH PROPORTION OF PEOPLE

DIAGNOSED WITH CFS/ME DO IN FACT HAVE REACTIVE HYPOGLYCAEMIA. The

advantage of RH is that is can be proved beyond doubt that it exists.

I would like to see ME treatment to include the Glucose Tolerance

Test (GTT) as standard screening at the first sign of symptoms.

It happened to us while we had the best ME care in the UK it could

happen to anyone. In fact the only reason we found out was because we

moved to Istanbul in Turkey and the doctors there would not accept

CFS as the cause. The did a series of tests and 2 months later Sophie

had the GTT and eureka!!!! the rest is history.

Below comments to your post:

1) Drinking water after you eat - it may speed up the attack by

dissolving carbs out of the digesting food quicker than when not

taken with water, speeding up the attack (it won't make the attack

worse). When in an attack one of the symptoms is thirst - maybe

taking water makes you feel better for removing this symptom - again

it wouldn't lessen or worsen the attack.

2) Taking sugar during an attack - of course the sugar will stop the

low blood sugar, but as the level rises it will once again reach the

trigger point to release a large flow of insulin causing another

attack 30 minutes later (it is only a temporary solution). This way

you quickly become very ill with this constantly swinging blood sugar

level.

3) RH is caused when blood sugar levels rise to a level where to body

releases insulin, this is normal but in RH the amount is too much.

The effect is for the insulin to cause a quick drop in blood sugar

level to dangerously low levels - i.e. it is a reaction to high sugar

intake that causes low blood sugar levels about 20-30 minutes later.

4) Flouride in cereals, water & soft drinks - my wife cannot eat

cereals, drinks only bottled water (have to in Uruguay) and does not

drink any soft drinks and therefore has a low flouride diet. She is

still RH. Also we have lived in Turkey, Middle East & South America

since the dignosis and only eat fresh produce. Each place the diet is

slightly different so I do not think the cause is from an external

source. I think it is an internal problem - i.e. she just has it! On

that subject we have just accepted the diagnoses and have

concentrated on solving the illness with diet. This is not easy to do

and I suggest that your time and effort would be better spent on this

rather than looking for the cause.

5) Don't know about flouride tube testing so cannot comment - as an

engineer RH cannot be diagnosed with anything apart from a transient

test i.e. a measurement of blood sugar level over a fixed time. This

can only be done with the GTT - as the problem is a reaction to sugar

intake the test mimics the intake and then monitors the blood sugar

level of the following 4-5 hours. See here for a good description

http://www.webplace.ca/hg/5hrtst.html

6) Having a reaction hours after eating - if a person only faced one

attack the symptoms would be easy to trace back to a single food or

meal. However, when people have been ill for years the bodys control

system is totally out of control and has been cycling between high

and low blood sugar levels probably on a 30 mintue basis. In this

case the symptoms are varied and cannot always be tied to any one

event. It is only after the body has calmed down from the correct

diet (this tool nearly 12 months for us) that you will be able to pin

any one attack with any one type of food intake. Now years on if my

wife eats something wrong we know within 30 minutes and can try to do

something about it.

7) The diet is the only way to control and it is very difficult to

perfect. It is a bit like walking a tightrope - too much carbs and

you are ill and too little and you are tired.

Hope it all helps.

Andy

> All

>

> Talk has now turned to Hypoglycaemia.

> Could some people be misdiagnosed with Reactive Hypoglycaemia. This

> is very possible.

>

> I found that in my diary I wrote that " it seems like all this

> happens after I eat " . Drinking water at a meal caused my symptoms

to

> esclate. Clean water has almost stopped the esclation of symptoms.

I

> know no one else here is F- poisoned, but for me,

>

> Could the Hypoglycaemia be the result of fluoride overdose.

>

> hypoglycaemia (low blood glucose

>

> symptoms that usually disappear 10 to 15 minutes after eating sugar

>

> What causes hypoglycaemia?

>

> Too much insulin in the blood

>

>

> Hypoglycemia should be confirmed by specimens drawn in fluoride

tubes

> (gray-stopper tubes).

>

> sodium fluoride tube (gray top) - inhibits glycolysis, avoids

> consumption of glucose by RBCs

>

> many common foods (such as popular soft drinks) already contain

> fluoride. Thus, people living in fluoridated areas who choose to

> consume such foods will most likely take in far more fluoride that

> the amount deemed safe by scientific estimates.

>

> When common breakfast cereals can contain as much as 10.0 ppm, it

is

> easy to see how quickly the average person can " overdose " on

fluoride.

>

> Fluoride in food could set off quite a reaction that could look

like

> hypoglycemia and reactive hypoglycemia.

>

> The fact that fluoride has a delayed reaction could account for

> people reacting hours after they eat when the inhabition of

> glycolysis starts to occur - which could set off a real roller

coster

> ride of the body trying to come to equilibrium.

>

> People can control hypoglycemia by watching their diet and eating

> more often, would this not smooth out the highs and lows?

>

> Ron

[Guest guest]

Andy said -

Note every

> meal we have in the evening is served with a helping of rice. >

Rice is one of the highest glycemic carbs and would be the WORST

thing for most people who suffer with reactive hypoglycemia. Its as

bad as eating potatoes which turn to sugar in the blood in about 30

minutes.

The best thing is to just eat protein with good quality fats plus

low carb vegetables.

Pam

[Guest guest]

Pam,

I agree on your comments on rice.

What you should do is cut out all the heavy carbs until you have a

period of being well - for my wife we did over 6 months of being well

before trying to reintroduce the wrong things again.

The important thing to note is everyone has a different diet.

Through trial and error we have been able to find what is good and

what is bad for my wife. We basically followed the diet in

http://www.guaidoc.com/Research_HGdiet.htm (by the way this was by

planned - as I only found this page yesterday) and this gave my wife

the stability to start experimenting by re-introducing food.

In the end the following were reintroduced into the diet with no ill

effect (although if eaten at the beginning of the diet I am sure

would have caused a reaction).

- Glass of very weak whiskey and water each night

- Half a cup of very well washed long grain rice (must be washed 4

times to remove any loose starch

- Very green bananas (do not taste sweet). She can tolerate up to 2 a

day but with at least 4 hours in between

- I make non sugared cookies (small) with oats - she can have one as

a snack - two and she is ill!!

- One piece of diabetic chocolate - two pieces makes her ill!!

If you take the text book answer Sophie cannot have any of the above.

Trying these things as part of an experiment does take time and

causes relapses. It is always worrying doing this as it may ruin the

next 2 days but the benefits of have a few 'naughties' is

unmeasurable. Life on the diet can get dull so any bonus helps.

Take Pams advice - she is technically correct, but the reality of the

diet is well described by the following text - note this is the best

I have ever read on the issue:

" Consider the entire dietary process as if one were building a

checking account.First, deposits must be made to obtain sufficient

funds. Only at this point should one begin writing checks knowing

that balances are lowered with each one written.Similarly, the

hypoglycemia diet builds energy reserves to the highest amount

attainable for a given individual. Only then can experimentation with

forbidden carbohydrates begin. Each such " cheat " draws on the account

and one cannot overspend without developing symptoms anew. Thus, over

time, this hunt and peck system will define the ultimate, necessary,

dietary restrictions.

In the searching phase one will slip occasionally by overindulging in

carbohydrates. Close observation should detect the first symptom that

develops after such excesses. Often this may be merely fatigue, but

in other cases it will be frontal, pressure headaches. Gradually,

most hypoglycemics learn exactly what they can allow themselves. They

must often resume a perfect diet when emotional or physical stresses

occur since these place greater demands on their energy bank. The

premenstrual period is the most fragile. At such times it becomes

more difficult to maintain an adequate account. No physician or

dietician can adequately predict the final dietary restrictions. "

the full text is available on http://www.guaidoc.com/hypoglycemia.htm

Rgds

Andy

> Andy said -

> Note every

> > meal we have in the evening is served with a helping of rice. >

>

> Rice is one of the highest glycemic carbs and would be the WORST

> thing for most people who suffer with reactive hypoglycemia. Its

as

> bad as eating potatoes which turn to sugar in the blood in about 30

> minutes.

>

> The best thing is to just eat protein with good quality fats plus

> low carb vegetables.

>

> Pam

[Guest guest]

Kathy,

I think your post just proves how everyone needs to find their diet.

Well over a year of eating washed white long grain rice (with no ill

effect) we decided to switch to 'healthier' brown rice - at that

point my wifes health plummeted - My guess was the skin of the rice

did not allow us to wash out the excess starch from the rice. So when

this was cooked and eaten the effect was to release a higher quantity

of Carbs into the system - a level my wife couldn't cope with. We are

now safely back on white rice every evening.

A very good example.

Andy

> > meal we have in the evening is served with a helping of rice. >

>

> Rice is one of the highest glycemic carbs and would be the WORST

> thing for most people who suffer with reactive hypoglycemia. Its

as

> bad as eating potatoes which turn to sugar in the blood in about 30

> minutes.

>

>

> Hi Group-

>

> And if what I have read and been taught is true, white rice as

well as other processed carbs such as white breads help strip the

body of magnesium. Even with my hypoglycemic problems, I do well

with brown basamati rice which I have been told is low on the

glycemic index.

>

> Kathy

>

>

>

>

[Guest guest]

> meal we have in the evening is served with a helping of rice. >

Rice is one of the highest glycemic carbs and would be the WORST

thing for most people who suffer with reactive hypoglycemia. Its as

bad as eating potatoes which turn to sugar in the blood in about 30

minutes.

Hi Group-

And if what I have read and been taught is true, white rice as well as other

processed carbs such as white breads help strip the body of magnesium. Even

with my hypoglycemic problems, I do well with brown basamati rice which I have

been told is low on the glycemic index.

Kathy

[Guest guest]

Alas, hypoglycemia, for which I was tested early early in my illness and

it did make me very sick is not always the whole picture. I treated it

with great care. I experienced some improvement. But the illness

marched on--not in an even line but while I'm not as careful as I was

originally with the diet never while I was did I experience the marvelous

improvement your wife did. I do believe that this is a diagnosis which

includes many possible pathological pathways, and if you get it

fast/early, and if not too many pathways are messed up treating one, as

in the case of your wife, is often enough.

I think the diet for hypoglycemia is very similar to some of the

fundamental dietary tenets for our illness, but the illness is very often

more than, as with your wife, being made up of reactive hypoglycemia.

That many docs look down on GTT might be responsible for our getting

sicker than we ought to, as in some of us, this pattern may be an early

pathology of the disease. Maybe some people only have RH. I don't know.

Judith Wisdom

On Wed, 18 Dec 2002 16:38:14 -0000 " indyinuruguay

<indyinuruguay@...> " <indyinuruguay@...> writes:

> Hi everyone,

>

> I am posting here after being surprise at the lack of interest in

> what I had to say from both MEactionUK and MEsseage-UK. The

> information below is posted from actual experience and is not posted

>

> to sell anything or promote anything – it is purely from my

> conscience. I would hate to see people unnecessarily going through

> the same experience as my wife and I endured for 7 years. Please

> read

> the following it may be helpful to at least a couple of you.

>

> I was a carer of a ME sufferer for 7 years and went through what

> most

> of you went through. During the time we even managed to be looked

> after by Professor Pinching at St Barts in London (He was convinced

>

> my wife had ME). It cost my wife her job and 7 of the best years of

>

> her life (23-30). All the symptoms led to the diagnosis of ME.

>

> Luckily for us I have a job that has taken us to many different

> countries, so we have seen many different doctors - in 1999 we ended

>

> up living in Turkey. The advantage of this is that you don't get

> the 'blinkered' medical view that comes in any one country. The

> doctors in Turkey did not take Sophie's (my wife) illness as being

> ME

> and spent 2 months carrying out a series of tests that eventually

> led

> to the diagnosis of Reactive Hypoglycaemia (RH).

>

> The important thing to realize is that RH can be proved beyond

> reproach by drinking a glucose solution after 12 hours of fasting

> and

> then monitoring the blood sugar level over the next 4 hours

> (although

> some UK doctors do not believe it exists). This is a simple test

> (although it will make a sufferer very ill) that all ME patients

> should go through when first ill (in my humble opinion).

>

> As a result 7 years after being first diagnosed with ME my wife was

>

> able to start to treat herself through a very strict diet. After 6-12

>

> months she was able to say she had a normal life and 2 years later

> we

> had our first child.

>

> Has anyone else with ME had the 'glucose tolerance test' for

> reactive

> hypoglycaemia?

>

> The symptoms for RH are the same as ME but there is a real test for

>

> it. Please read through the attached web-page to do a self

> assessment

> on your symptoms.

>

> http://www.webplace.ca/hg/quest.html (please note that my wife did

> not have all the symptoms mentioned in the questionnaire and also

> had

> many other symptoms that are not associated with RH but more usually

>

> associated with ME – sore throat, swollen glands, etc…)

>

> If only 1 of you are diagnosed incorrectly with ME when you have RH

>

> then I would be happy in the knowledge of that person facing the

> possibility of feeling well for Christmas 2003. Remember that I am

> an

> ex-carer and if you have RH then the treatment will be only a severe

>

> change in diet - i.e. it cannot be solved with drugs (I'm not

> selling

> anything but giving away my experience).

>

> Please have a look at the self evaluation questionnaire.

>

> THE SYMPTOMS OF ME AND RH ARE SIMILAR – THIS COMBINED WITH THE UK

> MEDICAL PROFESSION QUESTIONING THE EXISTENCE OF RH LEADS ME TO

> BELIEVE THAT SOME OF THE SUFFERERS OUT THERE ARE SUFFERING FROM RH

> NOT ME – even a respected expert can get it wrong (and don't get me

>

> wrong I do respect Professor Pinching at St Barts. for his

> acceptance

> and willingness to treat sufferers of ME).

>

> If anybody wants to discuss this further please send me an email - I

>

> would be more than happy to help.

>

> Best regards,

>

> Andy Malcolm

>

>

>

> This list is intended for patients to share personal experiences

> with each other, not to give medical advice. If you are interested

> in any treatment discussed here, please consult your doctor.

>

>

[Guest guest]

Bob,

The liver is capable of producing glucose and putting it into the

blood. It can do so by glycogenolysis, which means the breakdown of

stored glycogen to produce glucose, or by gluconeogenesis, which

means making new glucose, primarily from amino acids, derived from

protein. It sounds as though your blood glucose control system was

oscillating, with the insulin first rising up, lowering the blood

glucose, and then dropping down, probably together with a rise in

glucagon, another hormone produced by the pancreas, which caused the

liver to produce more glucose, and so on. It's also possible that

adrenalin (epinephrine) was also secreted, if your blood glucose got

too low. This promotes glycogenolysis, also.

Rich

> Thanks andy, I was diagnosed properly the doctor just called it

Hypoglycemia back in '75. Yes the blood sugar level swung above and

below the fasting level for the entire five hours.

>

> Rich, maybe you can help me understand how the blood sugar level

could drop down after ingesting the glucose, then in an hour, go

back up above the fasting level and continue going up and down for

five hours? I would think that after the blood sugar goes up from

ingesting glucose, and the insulin is released, and it goes down, it

would stay there. How could it go back above normal by quite a bit?

>

> Bob