ATP Profile results

[Guest guest]

Hi Rich and all,

I hope you are feeling better?

If it is convenient, no rush, could you possibly do your Sherlock

Holmes act on our ATP profile tests etc - results below? I'm afraid

there is rather a lot of data as there are two of us.

We will post our ATP etc results in two separate posts to make it easier.

Please excuse the long-winded discussion but it has helped us get our

minds around all this stuff - it is so complicated! - and it may be

useful to PWCs who are new to it all.

And please excuse all the many questions - don't feel you have to

answer them all!

Many thanks for all your help and advice,

Sheila and Jim

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1. GLUTATHIONE and METHYLATION

We asked Biolab to test our RBC glutathione. Both of us appear to have

normal glutathione which surprised us. Presumably this means our

trans-sulfuration pathways are working ok? But is ok enough -

especially if we need to detox, and also because we are low in

magnesium and ATP? (See 2. below).

But we are wondering if there still could be a problem elsewhere in

the methionine cycle? For instance, could there be a problem in

converting homocysteine back to methionine? Or would that ultimately

result in lowered glutathione and so is unlikely?

In November 2005, Sheila tried some folinic acid and some TMG and B12

and felt improvements with them, but only took them for a couple of

weeks. So that made us more surprised by the results of the GSH being

normal. Also, we are deficient in NAD (see below) and this is needed

in the folate pathways, as is ATP.

In the recent Swedish study that found high homocysteine and low B12

in the spinal fluids of CFS patients, could this indicate a partial

blockage in the recycling of homocysteine to methionine, and also

result in normal glutathione, which would fit our results?

What about elsewhere in the methionine cycle, in the SAMe area, for

example? ATP is used in the first reaction of the cycle, converting

methionine to SAMe and we are both low in ATP (see below).

Before we got the results we both tried taking magnesium and B6.(We

are both taking some B6 and Mg already.) Jim felt terrible and only

lasted a week before giving up for the time being. Sheila also had a

lot of trouble but managed small doses, feeling a bit better when she

added some taurine. Jim also tried taurine on it's own but got a

strong reaction and felt one day was enough! Do these reactions

indicate that we should start with a tiny dose and slowly work up, OR

could there be some reason that we shouldn't take them at all at the

moment?

If you think we still do need to boost our methylation cycle, should

we do this before starting Dr Myhill's ATP treatments below?

2. ATP and MAGNESIUM

Both of us have low or lowish ATP levels and significantly low

magnesium. ADP conversion to ATP is low to normal. NAD is deficient

(see 3. below).

In previous posts you connected low ATP and Mg with low glutathione

yet this doesn't seem to apply to us.

Dr Myhill suggests the following supplements - based on research into

patients who have had heart attacks where the heart muscles become

rapidly depleted of ATP, though it should perhaps be pointed out that

these patients didn't have CFS:

Magnesium - 300mg oral, with injections 2ml

D-Ribose - 15g daily, reducing with time

Co-enzyme Q - 200mg (300mg for Jim) for 3 months then down to 100mg

Acetyl-l-carnitine - up to 2g

Niacinamide B3 - 500mg

Vitamin B12 - 2-6mg per week, injections

It is interesting that in order to get magnesium into the cell (up the

concentration gradient) you need ATP (to provide the energy) - and to

make ATP and use ATP you need magnesium. A vicious circle. Dr Myhill

has found all her CFS patients are deficient in magnesium. We have

taken magnesium tablets for several years (sometimes in citrate form

other times as AAC).

So we were wondering therefore if Dr Myhill's approach is actually the

best way to tackle the magnesium problem: she suggests sorting out

both ATP and magnesium and NAD at the same time so that they will help

each other. Presumably this hasn't been tried before in CFS, or not

until recently. It is still too early to see if her protocol is

effective though we hear that some people, like us, have trouble

taking the supplements at the dose suggested and have to go slowly.

There is also the question of taking calcium with the magnesium. We

seem to remember reading that calcium and magnesium compete with

receptor sites for absorption in the gut. If this is correct then

perhaps we should reduce the calcium intake? If we are depleted of

magnesium we are likely to have too much calcium in the cells. On the

other hand it is usually said that calcium and magnesium should be

taken in the ratio 2:1. This whole area is very complex! Can anyone

help with this?

Similarly, would it be a good idea to supplement taurine along with

magnesium as we think taurine helps the kidneys retain magnesium?

In an article, Dr Myhill has said that vitamin B1 (thiamine) is needed

for magnesium to get into the cells. (Also B1 (as co-enzyme TPP) is

important in glucose metabolism (and therefore presumably ATP

formation?). Rich has written that low thiamine can reduce NADPH and

then glutathione.)

She also mentions that vitamin D is necessary for the body to utilize

magnesium, and boron, copper and B6 prevent deficiencies of magnesium.

Interestingly, we have just come across the following review of

research on magnesium and Lyme disease by Marnie on Lyme-net.

http://tinyurl.com/l45sq. This seems to have some really relevant

info on magnesium to CFS patients and especially those with lyme. It

is very technical but Rich et al maybe able to glean things from it.

Our GP (family doctor) has told us that he is unable to prescribe any

of Dr Myhill's treatments because he cannot take responsibility for

treatments that he knows nothing about. So instead of Mg injections we

will take oral Magnesium chloride (we have a chemist friend who got us

the raw chemical). And we will take sub-lingual methyl B12 tablets.

I read that Dr Cheney has doubts about taking ribose - can't remember

why - possibly because it could boost up the mitochondria when they

are not really up to the job and you have not answered the problem of

why they are functioning so badly. This could be putting them under

more stress leading to further mitochondrial damage in the long run?

So many questions!

3. NAD / VITAMIN B3

NAD is a very important chemical and both of us are deficient though

we both have taken a multi vit/min for years with niacinamide . Dr

Myhill says all her CFS patients who have been tested are deficient in

NAD. But why should this be? We wonder if NAD deficiency deserves more

attention in CFS. NAD (as NADPH) is important in the citric acid

cycle for making ATP. It is also used in the folate pathways - to make

dietary folate bio-available. It also (as NADPH) is needed to recycle

GSSG to Glutathione.

4. SUPEROXIDE DISMUTASE

Sheila has a significant problem here. Interestingly she has normal

glutathione. Any ideas about this?

Presumably, low SODase levels will result in increased free radicals

and oxidative stress? According to Pall, high levels of peroxynitrite

and nitric oxide attack the mitochondria and thereby reduce ATP

production and Rich, you have pointed out that peroxynitrite blocks

aconitase, an important enzyme in the Krebs Cycle, and also possibly

cytochrome oxidase in the respiratory chain - both concerned with ATP

production. It all seems to fit together!

Dr Myhill suggests the following to help SODase levels:

Copper - 1mg, breakfast

Manganese - 5mg, lunch

Zinc - 30mg, night

5. CELL FREE DNA

Sheila has elevated levels indicating cell damage. What is the

significance of this? Presumably this fits in with the increase in

free radicals and the low SODase function and/or increased apoptosis?

6. TRANSPORT OF ATP ACROSS MITOCHRONDIA MEMBRANES

Sheila has problems here. Dr Myhill says it is due to toxins and

recommends further testing - DNA adducts - and then detoxifying using

far infra red saunas . But this raises several questions:

What would you do first: 1) get the methylation/ATP production

supplemented, or 2) detoxify?

Does anyone have any experience/knowledge of the DNA Adducts test?

7. SOME OTHER THOUGHTS

Both of us were diagnosed with Borrelia infections by Dr about

two years ago. We have found that treatment (with Samento and

colloidal silver) is very difficult - we haven't been able to get up

to a decent dose. Jim only managed a dose of 4 drops daily of Samento

before eventually giving up, for time being. Magnesium deficiency also

appears in Lyme disease as mentioned above: http://tinyurl.com/l45sq.

Ginkgo has been shown to reduce peroxynitrite, so that might be worth

trying?

Both of us tend to be very sensitive to taking many of the prescribed

supplements and find it is necessary to start with very very low doses.

Our homeopathic doctor said that with chronic illness the body will

adapt to the conditions it finds itself in and the homeostasis

mechanisms establish a new, lower, level of balance. This may mean you

can do less than before but it is at least keeping you alive. But the

balance is easily upset and if you throw say magnesium at it then the

body doesn't like it and tries to maintain the level of balance it has

already established. That is why you have to be careful with adding

supplements. He suggests the way to bring the level of balance back up

to normal is to treat the whole system rather than one part of it,

taking all the relevant ingredients together and starting with low

doses, slowly, slowly increasing them.

Some other information which might be relevant to the overall picture:

He cannot tolerate more than about 20 minutes sun (ish sun!) and

has trouble increasing Vit D. He is constantly thirsty (worse at

night, effecting the brain badly, possible diabetes insipidus, but

tests were inconclusive). Our doctor thinks it may be due to

unbalanced electrolytes. Magnesium wasting in the urine, Rich has

said, occurs in DI. Hall has posted an improvement in his thirst

which is encouraging. He has tried Blasi salts (Recup) but can only

manage a very small dose. In the past he has had trouble with

tryptophan, tyrosine and benzodiazepams.

Sheila has bad allergies to foods and chemicals and is very sensitive

to things generally. She came up positive in a test for excreting

kryptopyrole and this depletes B6 and zinc so she has to supplement

them, it's a genetic thing. She has been taking about 80-100 mg of B6

and about 50-100mg zinc with copper too. She wonders if this could

have any relevance?

Many thanks again for all your help and advice,

Sheila and Jim

[Guest guest]

Hi Sheila,

One or two answers in text.

> 3. NAD / VITAMIN B3

.. Dr

> Myhill says all her CFS patients who have been tested are

deficient in

> NAD. But why should this be?

I am one of her CFS patients and my NAD was normal!

>

> 6. TRANSPORT OF ATP ACROSS MITOCHRONDIA MEMBRANES

>

> Sheila has problems here. Dr Myhill says it is due to toxins and

> recommends further testing - DNA adducts - and then detoxifying

using

> far infra red saunas . But this raises several questions:

> What would you do first: 1) get the methylation/ATP production

> supplemented, or 2) detoxify?

> Does anyone have any experience/knowledge of the DNA Adducts test?

Dr M often suggests doing both detox such as FIR saunas and working

on ATP stuff at the same time. I asked whether I should be

conentrating on ATP, or detox or antiborrelial stuff first and she

reckoned all at once. DNA adducts tests are around £80. I have

adducts to lindane and nickel - it is thought they are giving a

genetic block on my Mn SODase. What I don't think is clear is

whether the saunaing could demobilise some toxins from the fat into

the blood and hence increase the DNA adducts. I suppose if this

happened then they would eventually go down once you got rid of much

of the fat stores.

Hope this helps,

Carol

[Guest guest]

Hi again Sheila,

I forgot to say, there are also other test to look for toxins as

well as DNA adducts. I had a fat cell analysis done a few yeasrs

ago at Biolab and it showed up other things besides the lindane.

There is also a sweat toxin test (don't know anything about this)

and heavy metal tests.

Cheers,

Carol

-- In , " carolwxyz99 "

<carolwxyz99@...> wrote:

>

> Hi Sheila,

>

> One or two answers in text.

>

> > 3. NAD / VITAMIN B3

> . Dr

> > Myhill says all her CFS patients who have been tested are

> deficient in

> > NAD. But why should this be?

>

> I am one of her CFS patients and my NAD was normal!

>

> >

> > 6. TRANSPORT OF ATP ACROSS MITOCHRONDIA MEMBRANES

> >

> > Sheila has problems here. Dr Myhill says it is due to toxins and

> > recommends further testing - DNA adducts - and then detoxifying

> using

> > far infra red saunas . But this raises several questions:

> > What would you do first: 1) get the methylation/ATP production

> > supplemented, or 2) detoxify?

> > Does anyone have any experience/knowledge of the DNA Adducts

test?

>

> Dr M often suggests doing both detox such as FIR saunas and

working

> on ATP stuff at the same time. I asked whether I should be

> conentrating on ATP, or detox or antiborrelial stuff first and she

> reckoned all at once. DNA adducts tests are around £80. I have

> adducts to lindane and nickel - it is thought they are giving a

> genetic block on my Mn SODase. What I don't think is clear is

> whether the saunaing could demobilise some toxins from the fat

into

> the blood and hence increase the DNA adducts. I suppose if this

> happened then they would eventually go down once you got rid of

much

> of the fat stores.

>

> Hope this helps,

> Carol

>