Amy/Supplement Sensitivity

[Guest guest]

Hi Amy,

I don't know the answer to your question, but Dr. Cheney put me and other

patients on A multi called Nutrient 950, the one *without* copper, iron and

iodine, by Pure Encapsulations. The company is really good, ships in timely

manner. So far, I found the best price at Oakway Health Center in Oregon. They

have discounts and special offers sometimes, 25% and up.

You could probably call the company to ask about the absorbtion/Celiac. I think

Oakway also has a Scientist you can ask questions of.

I have no financial connection to either, just a patient.

Another thing that helps me, taking so many things, is to find things in liquid

form. I'm not an expert on this, but there are more liquid forms of nutrients

available today.

I take liquid Selenium from Allergy Research Group (also per Cheney). And liquid

forms of Carnitine, Acetyl-Carnitine, fatty acids (Omega 3, EPA,DHA,etc), Methyl

B-12, and Folic Acid. That one's from Pure Encapsulations also. I found a

Vitaimin D3 in liquid, but not sure that's going to work, for the amount I want

to take.(samll bottle/dose).

Several companies have Magnesium in a cream to rub on the forearms...I use

Kirkmans's.

I definitely agree with beginning with very small amounts and building slowly.

This works for me, not only because of sensitivity and avoiding problems, but I

benefit from very small doses, therefore for both reasons, I rarely go very high

on anything.

THis point is really important. Before we knew much about CFIDS/CFS/ME, patients

used to get into detox programs for regular people or that they'd done before,

and landed in the hospital, and with long term problems.

I respond to a number of medications, as others have said here, by literally

biting off a small corner. This defies conventional wisdom, and difficult for

doctors to grasp, but common as can be for us, the patients, and our

Specialists.

When patients began ImmunoPro in 1999, some were taking the tiniest

amount...less than 1/8th of a teaspoon. But benefitting from that. Someone sent

me the teensiest, tiny little spoons you've ever seen, in case I needed it that

small.

But I was able to begin with 1/8th of a teaspoon. I went extremely slowly over a

couple of years. And finally got to 2 scoops a day where I have remained since.

It helped me from the very beginning...the 1/8th. Some remain on very tiny

amounts.

We have to remember that members of this list are addressing entirely different

conditions, calling them the same name...CFS...CFIDS...or ME. In addition to

being in different stages of the disease we have, different complications,

different ages, plus other co-exisiting factors.

It is common, also that something may work or be tolerated some times, but not,

other times.

So, treatment has to be very individualised. This is the approach of ME/CFS

experts over the years, even though there may be similar patterns of the

disease, and trends in their thinking...which aspect they choose to focus on at

the time.

Most do have a multi-pronged approach, addressing multiple systems, and the

specific ways they connect, and manifest in the course/phase of disease.

BW,

Katrina

> >

> > rich you wrote this: SEE CAPS BELOW

> > I think that if it were me, I would probably proceed cautiously

> > on the dosages and start with Dr. Amy's multi, working up on the

> > dosage slowly as I could tolerate it. That supplement should build

> > up a lot of the organs and systems, because of its comprehensive

> > makeup. Then I think I would add the phosphatidylserine complex for

> > a while, and see how that goes. After building myself up for a while

> > with these, I would then add the two folate-containing supplements at

> > very low dosages, and the sublingual hydroxocobalamin. I think the

> > key would be patience and avoiding the temptation to crank up the

> > dosages too fast. In this way, I think you would have the best

> > chance to avoid runaway detox and die-off that would be too intense

> > for you to bear and that might knock you down further in your

> > condition. I think you would just have to proceed very slowly and

> > carefully. I think it would be important to help your excretion as

> > well as you could, drinking a lot of water to help your kidneys flush

> > out the small molecule toxins, and taking enough vitamin C or

> > magnesium or both to keep your digestive tract moving well enough to

> > carry out what is dumped into the bile by the liver.

> >

> > CAN YOU address whhether these supplement will be absorbed by mal

> > absorbption folks or what about celiac? is there any way to get the

> > beefit of these supplements in these cases?

> >

> > thanks, amy

> >

>