Chronic Fatique Syndrom - MED: Vitamines and Minerals

Author

MED: Vitamines and Minerals

Rika Kageyama

2005-08-07, 10:49 pm

Another stupid question! :0
How much do you take vitamins, mineral stuff?
(per day).

I finished my stocks of the bottles and I am going to
order them from now on. And, the simple question raised.
(Particularly, because of my "additional" problem. But,
I assume the RP and CFS are same kind of problems
(from my view point) so, I stick with you, (or, let me
stick with youuuuuu !!!!) "the super knowledgeable
guys" here :-)

Hope this could be a good summary of your experience.

Thank you again!

Big Hugs,
Rika
From Tokyo, Japan

bobbie sellers

2005-08-08, 11:47 am

Carrie Trecker

2005-08-08, 10:49 pm

Not sure if I sent the original of this correctly...so here it is again:

Hello all,
I rarely write to this group, but wanted some input on new 'treatment' plan.
I have just started Valtrex (love that everyone assumes I have herpes) and
transfer factors...and I am still in the testing phases; meaning I am taking
very small pieces of everything to see how I react. Anyway, so far so
good...nothing too serious, although I had a major panic attack following
yesterday's dosage. Anyone here taken the antiviral route? Would love to chat about
it or anything else for that matter.

I do horrible on all hormones, cannot even tolerate tiny slivers of
thyroid/adrenal etc. meds, so doc and I decided to fight the root cause (hopefully).
-Carrie T

ahimsa

2005-08-08, 10:49 pm

> Another stupid question! :0
> How much do you take vitamins, mineral stuff?
> (per day).

Hi Rika!

Not a stupid question at all, but I think the answer can
be very complicated. It all depends on what symptoms you
are trying to treat. This is just my opinion, and may be
completely wrong, but I'll try to explain my thoughts.

To give a very simple example, I take salt tablets because
it helps my problems with maintaining blood pressure. But
not every ME/CFS patient has these same kind of problems.

And even if a ME/CFS patient does have diagnosis of some
kind of orthostatic problem, such as NMH (neurally mediated
hypotension) or POTS (postural orthostatic tachycardia
syndrome), some of them cannot take salt tablets. They may
get too sick to their stomach even if they take the salt
tablets with food. Or maybe they take them but do not see
any results. So it is very hard to make a recommendation
without a lot of caveats.

It is so hard to connect the dots - there are so many
seemingly random factors that are very hard to track. But
I have figured out certain things help me a lot. One of my
biggest problems are symptoms from NMH (dizziness, nausea,
fast heart rate, sensitivity to heat or adrenaline). When
I treat these symptoms I do a lot better. So, for me, the
salt tablets are a huge help. And the midodrine (generic
form of ProAmatine) is an even bigger help. But it is hard
to pass on this information as help for "ME/CFS patients"
because I don't know what percentage of patients on this
list have this diagnosis.

In short, I find it helps more to list a specific symptom,
or a group of the worst symptoms, and then try to figure
out what triggers those symptoms (e.g., worse at night or
in the morning? in the heat? after eating? when standing?
etc.) Only after I get that information do I try to figure
out what vitamins, minerals, or drugs will help. At least,
that's what works for me. I have had no luck when someone
suggests a specific vitamin or mineral for "CFS." I admit
that back when I first got sick I tried a lot of these
things that were supposed to be "good for people with CFS"
and they just did nothing for me.

Well, this was very long-winded, huh? I guess it just keeps
on reminding me that I feel like an "abnormal" CFS patient.
I often think maybe I "only" have NMH (which is plenty bad
enough, thank you very much, LOL!) and I don't have "ME/CFS"
(whatever that turns out to be).

Getting back to the original question, I can list vitamins
and minerals that I take daily, and why.

5 (or more) salt tablets (Thermotabs brand)
600 mg magnesium glycinate (helps with muscles)
B-complex (mostly for B-12, since I'm almost vegan)
1000 mg C vitamin (general health - placebo, probably!)
potassium (prescription, time released)
- Be careful with potassium, I take it under doctor's
care, because I'm also taking fludrocortisone & salt

I also take midodrine (a vasoconstrictor) and fludrocortisone
(a mineralcorticoid steroid) daily, and a migraine medication
as needed for pain. I'm probably missing something but that's
what I can remember off the top of my head.

I realize that this is long and complicated but I hope this is
helpful.

Hugs,

Marjorie
ahimsa@easystreet.com

Commit random acts of literacy--Join bookcrossing!
http://www.bookcrossing.com/mybookshelf/ahimsa

Rika Kageyama

2005-08-08, 10:49 pm

Hi Marjorie :-)

Yes. Your way is complicated

))
but, sounds "correct" :-)
I admit that it was so complicated that
I need your mail two or three times.

For now I learned Vitamin/Mineral should be decided
depending on what kind of medication (main course)
you take, such as you take fludrocortisone and midodrine
for your NMH: Neurally Mediated Hypotention (right?).

I hope my doc will start up prednisone as soon as possible
(close agents of fludrocortisone). And, this seems to become
the "main course" of mine. Mean, I have to adjust the vitamins/
minerals for the prednisone. How to find the "clue" to find the "fit
vitamins/minerals"? Did you research the medical interactions
and such? (...too complicated for me to deal with though...)
Or do you simply go to the nutritional doctor? I wish I have
some knowledgeable nutritional doctor here. (If there were,
they must expensive though).

But, anyway, I want to find "right" Vitamins/Minerals for
tuning my condition and medication. I don't want to be
killed by the long term use of prednisone.
CFSers have lots of knowledge and hints to cope with
any kinds of diseases.

OK. I prepare my mind for lots of studying.
In the mean time, please have a good rest!
I will reply more later, after digesting them!

Hugs,
Rika

ps. If you are abnormal CFS patient, then,
I am weird CFS patient <gggg>

ahimsa wrote:
> Well, this was very long-winded, huh? I guess it just keeps
> on reminding me that I feel like an "abnormal" CFS patient.
> I often think maybe I "only" have NMH (which is plenty bad
> enough, thank you very much, LOL!) and I don't have "ME/CFS"
> (whatever that turns out to be).

Rika Kageyama

2005-08-08, 10:49 pm

bobbie sellers
> Moreover whatever combination of food supplements, vitamins
> and minerals work for one person may not be usuable by another.
> But I will get back to you later on this matter.

Right. I need some "clue " to find my correct food supplements.
Thank you very much for sharing!

Hugs,
Rik

e_j_anderson@juno.com

2005-08-09, 8:50 am

I take a multivitamin/mineral pill, and this is the best I could find. I tolerate it well -- others have given me constipation or even gave me dizzy spells and nausea. This one agrees with me. It is fairly high potency, though CFIDS patients could usually
use extra magnesium on top of what is available here.

It is called AMNI Basic Preventive 5

You can look at the ingredient list here

http://www.amazon.com/exec/obidos/t...482206?v=glance

so you can compare to whatever else you might be considering. I'm not saying this is for everyone, but I recommend it to all my healthy friends, too. My mother takes it too.

This certainly isn't the only thing I take. But I consider this the foundation.

Incidentally, I started taking bromelain about 10 days ago and have been feeling much better lately. I don't know if it is the cyclical thing with CFIDS or whether it is the bromelain. Time will tell.

Eric

___________________________________________________________________
Try Juno Platinum for Free! Then, only $9.95/month!
Unlimited Internet Access with 250MB of Email Storage.
Visit http://www.juno.com/value to sign up today!

Rika Kageyama

2005-08-09, 11:48 am

Hi Marjorie,

You give us very practical information all the time :-)
-- I translated your surgery information to Japanese
a couple of years ago. (was on the same co-cure.j )
I believe I got your permission. Old story !

> 5 (or more) salt tablets (Thermotabs brand)
> 600 mg magnesium glycinate (helps with muscles)
> B-complex (mostly for B-12, since I'm almost vegan)
> 1000 mg C vitamin (general health - placebo, probably!)
> potassium (prescription, time released)
> - Be careful with potassium, I take it under doctor's
> care, because I'm also taking fludrocortisone & salt

I don't have any knowledge about Vitamins/ Minerals.
OK. I see at least, Magnesium, Vit B-complex and
Vit C seem to be essential.
(...I remember that Vit C has been studied again and
again. But, still Vit C is "alive". Means, "for general
health" is good enough reason to count...)

Your potassium and salt tablets are for NMH and/or
your orthostatic intolerance.
(...this part is "individual adjustment", right?...)

So, now I can say "try the one for general health
BUT be careful for the ingredients. As long as you
are allergic to many chemical substances".

The another key word seems to be "Chemical
allergy". (...Multiple Chemical Allergy...).

....Please correct me when the above summarized
theory was wrong...

>
> I also take midodrine (a vasoconstrictor) and fludrocortisone
> (a mineralcorticoid steroid) daily, and a migraine medication
> as needed for pain. I'm probably missing something but that's
> what I can remember off the top of my head.

OK, I also can say "try the basic idea thought to be good for
CFS". "Then, I (or every one) add to adjust each individual
symptoms and condition" (including each individual medication
environment).

>
> I realize that this is long and complicated but I hope this is
> helpful.

Great help :-)

Let's hang in there.

Big Hugs,
Rika
CFS since 1979, 15 yo.
RP since 1995, 31yo.

ps. Hope I won't scare you. But, why not RP from CFS,
while some RP from FM??? "Three of them" (RP, CFS,
FM) have common points: "problem of immune system".
MORE, "the multiple chemical allergy" is involved.
It is clear enough to me that CFS is the problem of
immune system. Or, all are just "coincidence" ???

Rika Kageyama

2005-08-09, 11:48 am

Hi Eric and all!

Thank you VERY MUCH for your information!
> I take a multivitamin/mineral pill, and this is
>the best I could find. I tolerate it well --
> others have given me constipation or even
>gave me dizzy spells and nausea.

Yes. As you mentioned here, most of them
gives me nausea /dizziness. I thought all
were from my mind....

> Incidentally, I started taking bromelain about
> 10 days ago.

I see. I was not able to catch up the contents
of all of you here and Bill P at that time, but,
this recalls what he mentioned.

>Time will tell.

That is important point. :-)

Hugs,
Rika

ps. My computer environment has been "dial up"
so, please excuse my delayed reply....

ahimsa

2005-08-09, 5:49 pm

Hi again, Rika!

> I don't have any knowledge about Vitamins/ Minerals.

I confess, I have very little knowledge about vitamins
and minerals, too! I have read some books and so on, but
I'm just a patient, no medical or nutritional expertise.

> OK. I see at least, Magnesium, Vit B-complex and
> Vit C seem to be essential.

I have no clue whether these are essential or not. I
take them for myself but for all I know they are placebo!

The only one where I have a very strong reason is the
B-complex. Since I eat almost no animal products (only a
little dairy) it's good to have a consistent source of
B-12. I believe that 1000 mg of vitamin C and 600 mg of
magnesium are harmless, and wouldn't hurt anyone if they
tried it, *BUT* anyone reading this should talk with a
doctor just to make sure. Both Vit C and magnesium in
large enough doses can cause diarrhea. Maybe my doses
would be too large for someone else.

> Your potassium and salt tablets are for NMH and/or
> your orthostatic intolerance.
> (...this part is "individual adjustment", right?...)

Yes, this is definitely an individual adjustment! If
a person with a CFS diagnosis has high blood pressure
extra salt can be very bad for that person. Potassium
in large doses can cause heart problems. So, these are
definitely to be used only if you talk with a doctor.

> So, now I can say "try the one for general health
> BUT be careful for the ingredients. As long as you
> are allergic to many chemical substances".
>
> The another key word seems to be "Chemical
> allergy". (...Multiple Chemical Allergy...).

I know nothing about allergies. I don't seem to have
any allergies, thank goodness.

Re: Multiple Chemical Allergy, I think in the USA we
call it MCS, Multiple Chemical Sensitivities. I don't
have this, either.

At any rate, assuming a person is not allergic or in
some say sensitive to the fillers or whatever, then
probably reasonable doses of vitamins and minerals
will not hurt. But reasonable depends on the person
and the vitamin. There have been some cases even with
water soluble vitamins (I think one of the B vitamins)
that caused some peripheral neuropathy (tingling or
numbness in the extremities).

> OK, I also can say "try the basic idea thought to be good for
> CFS". "Then, I (or every one) add to adjust each individual
> symptoms and condition" (including each individual medication
> environment).

I'm not sure I understand this, exactly, but I think it's similar
to what I was saying. I'll try it again just to be clear. There
were two basic ideas. (again, just my ideas, I have no medical
expertise, I'm just a patient struggling to get better)

Idea number 1:

Adjust all vitamins, minerals, and prescriptions according to
the individual symptoms of the person. Don't assume that a pill
that helps one ME/CFS patient will work for another one. I agree
with this idea completely. It was the main point of my first
email. It was only when I figured out the triggers for my own
symptoms (in my case, a drop in blood pressure, caused by my
Neurally Mediated Hypotension) that I found any treatments that
worked for me (salt, midodrine, fludrocortisone, etc.).

Idea number 2:

A patient can try vitamins or minerals that are supposed to be
good in general for health, or supposed to help people with CFS,
to see if it will help. This approach, trying treatments that
have worked for other people with ME/CFS, has NOT worked very
well for me. But it might work for others.

Anyway, I hope this makes sense. I wish you lots of luck in your
search for any vitamins or minerals that would help you. I don't
know where to start looking. I agree that most doctors don't know
and don't really care much about nutrition at all.

Marjorie
ahimsa@easystreet.com

Commit random acts of literacy--Join bookcrossing!
http://www.bookcrossing.com/mybookshelf/ahimsa

PS. I will send a separate message about fludrocortisone and
prednisone.

Andrea Frankel

2005-08-09, 10:49 pm

e_j_anderson@juno.com wrote:

>I take a multivitamin/mineral pill, and this is the best I could find. I tolerate it well -- others have given me constipation or even gave me dizzy spells and nausea. This one agrees with me. It is fairly high potency, though CFIDS patients could usuall
y use extra magnesium on top of what is available here.
>
>It is called AMNI Basic Preventive 5
>
>
>
I have had many problems with ordinary brands of vitamins and
supplements. The brand I fall back on (and the multi I take) is
Thorne. You can order this from NEEDS or from www.DrZ.com (NAYY...). I
take one called "Meta Fem", which is for peri- or post-menopausal
women. I have never had nausea or dizziness on this, and the quality is
very high. There are also several Thorne multis called "Basic
Nutrients" with a Roman numeral after it; some have copper and iron, and
some don't.

One supplement I am strongly convinced is helpful to everyone over 30,
and probably everyone with CFIDS, is CoQ10 (aka Coenzyme Q-10, or
ubiquinone). It is a real workhorse in the body, plays many roles. But
the ones that have the strongest evidence are heart muscle, gum tissue,
and mitochondrial energy production (which we know is poor in CFIDS).
The oil or gel capsule form is better than the dry form. I get mine
from www.lef.org (NAYY...) I take 100 mg daily of the high-absorption
form, which I consider a minimum. Some people need to take 300 mg daily
to see an effect. I've been taking it for over a decade, mostly for the
mitochondrial energy, but can happily report that it has cleared up the
gingivitus that was getting started back then. I also love the new
Mitochondrial Energy formulation from LEF, and their Cognitex formula
for brainfog. They really work for me.

Considering the RP, Rika, you might want to go to www.lef.org or
www.lifeextensionvitamins.com, and look up "Arthromax". I take it for
my arthritis, and it has also helped a few cartilage problems such as
plantar fasciitis. It has glucosamine and MSM, as you might expect, but
also some unique anti-inflammatory ingredients.

Hope this helps!

--

Andrea Frankel (andreafrankel at sbcglobal dot net)

"wake now! Discover that YOU are the song that the morning brings..."

bobbie sellers

2005-08-10, 8:51 am

Hi Rika Kageyama, on 08/08/05, you wrote:

RK> Another stupid question! :0
RK> How much do you take vitamins, mineral stuff?
RK> (per day).

RK> I finished my stocks of the bottles and I am going to
RK> order them from now on. And, the simple question raised.
RK> (Particularly, because of my "additional" problem. But,
RK> I assume the RP and CFS are same kind of problems
RK> (from my view point) so, I stick with you, (or, let me
RK> stick with youuuuuu !!!!) "the super knowledgeable
RK> guys" here :-)

"RP" is what?

RK> Hope this could be a good summary of your experience.

RK> Thank you again!

RK> Big Hugs,
RK> Rika
RK> From Tokyo, Japan

Ok finally getting around to the list.

I take second thing in the morning a
measure of undenatured whey protein (for theraputic
benefit it should be taken on an empty stomach).

With my breakfast an hour later I take:

One multimineral capsule repeated before lunch and in evening

One Vitamin C time release 500 mg capsule repeated in
afternoon.

One 500 mg Niacinamide capsule repeated as the multimineral
capsule.

One B-50 capsule repeated as the multimineral capsule

One dose of Cod liver oil

In addition I take Magnesium Malate one 1000 mg tablet
daily, a fish oil capsule(will be going of these).

and on my physician's instructions for my osteoporosis
I am taking 3 500 mg calcium ascobate in divided doses during
the day. Total calcium dose for the day is about 1500 mg.

And I am taking taurine 500 mg twice or three times
a day which seems to help my mood swings and lets me
sleep at night.

I used to take a very good multivitamin capsule but it
was expensive and I wanted to take the cod liver oil so
I gave up the multimineral which contained lots of the
vitamins in the cod liver oil to go on my present regime.

In addition to this I have several prescription meds
and use a big tray that hold seven smaller 4 compartment
trays to hold my supplements and medication.

later
Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

Del Mar: Where poverty is neither a philosophy nor a way of
life. But it is a misdeameanor.

e_j_anderson@juno.com

2005-08-10, 8:51 am

There are so many considerations as far as nutritional supplementation goes. But I just noticed a post on C0-Cure -- haven't even read it yet -- but the subject is Oxidative Stress increased in CFS, or something like that. We've been hearing about that fo
r several years from Cheney and others. Too much oxidation. That means antioxidants are necessary, and may need to be supplemented.

In humans, vitamin C, vitamin E, glutathione, CoQ10, superoxide dismutase (SOD), and albumin are major antioxidants. I think SOD is perhaps the most prevalent and one of the most potent.

Every bit helps -- green tea or other foods with high flavanoid content, fresh fruits, and of course the supplements. Cheney thinks glutathione is crucial, but is best raised by some form of whey protein -- must be undenatured.

There are many great avenues to reduce inflammation. The efamol is one. The bromelain that I mentioned earlier is another. The study I read a long time ago recommended "efamol marine" which included fish oil. If you just take the normal efamol, maybe salm
on oil capsules along with it might improve effectiveness. I'm not an expert here, but it might be worth investigating.

Eric

___________________________________________________________________
Try Juno Platinum for Free! Then, only $9.95/month!
Unlimited Internet Access with 250MB of Email Storage.
Visit http://www.juno.com/value to sign up today!

Rika Kageyama

2005-08-10, 11:51 am

Hi Eric,

> There are so many considerations as far as nutritional
> supplementation goes. But I just noticed a post on
> C0-Cure -- haven't even read it yet -- but the
> subject is Oxidative Stress increased in CFS,
> or something like that. We've been hearing about that
> for several years from Cheney and others. Too much oxidation.
> That means antioxidants are necessary, and may need to be
> supplemented.

> In humans, vitamin C, vitamin E, glutathione,
> CoQ10, superoxide dismutase (SOD), and
> albumin are major antioxidants.

Thank you for sharing your knowledge!
(Oxidative Stress)
That makes sense to me very much.

> Every bit helps -- green tea or other foods
> with high flavanoid content, fresh fruits, and of
> course the supplements. Cheney thinks glutathione
> is crucial, but is best raised by some form of whey
> protein -- must be undenatured.

The clue seems to be "glutathione"...
And, the above is so true "Every bit helps".

> There are many great avenues to reduce inflammation.

Yes. My target is reducing inflammation.
(...then i can reduce the amount of prednisone...)

> The efamol is one. The bromelain that I mentioned earlier
> is another.

I now understand bromelain for reducing inflammation...

> The study I read a long time ago recommended
> "efamol marine" which included fish oil. If you
> just take the normal efamol, maybe salmon oil
> capsules along with it might improve effectiveness.

I think Efamol is worth to consider to reduce your
inflammation.

Here is my general impression but....
It sounds "the purpose" seems to be so important
for alternative medicine fields...
(... you take for what?...the same as so-called
"Western medicine"...).
This is my impression but, if you can grasp "for what?"
then, you'll find the "right path" quicker...

Of course, you need to discuss with your doctors
to check interactions. Because, supplements are,
after all, "chemicals".

More later...

Hugs,
Rika

ps.Does Cheney still works for CFS?
(...simply from my cuieroustiy..)

Rika Kageyama

2005-08-10, 11:51 am

Hi Marjorie! :-)

> I confess, I have very little knowledge about vitamins
> and minerals, too! I have read some books and so on, but
> I'm just a patient, no medical or nutritional expertise.

We are "patients" with great patience <g>
I appreciate your sharing all the time.

>
>
> I have no clue whether these are essential or not. I
> take them for myself but for all I know they are placebo!

Well, if it is placebo for general study, it works for you.
And, that is not placebo! (...literally placebo though! :-)

>
> The only one where I have a very strong reason is the
> B-complex. Since I eat almost no animal products (only a
> little dairy) it's good to have a consistent source of
> B-12.

I see....
A month ago, I started diet, eliminating most of the
animal protein (...except fish and cram...). My diet
it is not Vegan due to my so poor appetite (...i feel
fish "tasty" while i feel meat/egg/milk "too much"...)
Whatever the diet is, I am on a diet.
You reminded me B-complex. Thank you, indeed.

> I believe that 1000 mg of vitamin C and 600 mg of
> magnesium are harmless,

Yes. I read Eric (...in the another mail...) shared
good information about Vit C (...anti-oxidents...).

You also reminded me about my reading (...in my remote
past...) that Magnesium worked for some cases of CFS
(...even i read Japanese paper reported Mg...).

BTW, do some of you remember what Magnesium
is working for?

> *BUT* anyone reading this should talk with a doctor
> just to make sure. Both Vit C and magnesium in large
> enough doses can cause diarrhea. Maybe my doses
> would be too large for someone else.

The problem is that almost no doctors have
knowledge about this fields...

I don't have knowledge about Vit C and magnesium
but, I recall that high dose of Calcium and Magnesium
is the cause of the kidney stone.

> If a person with a CFS diagnosis has high blood pressure
> extra salt can be very bad for that person. Potassium
> in large doses can cause heart problems. So, these are
> definitely to be used only if you talk with a doctor.

Exactly.

>
> I know nothing about allergies. I don't seem to have
> any allergies, thank goodness.
> Re: Multiple Chemical Allergy, I think in the USA we
> call it MCS, Multiple Chemical Sensitivities. I don't
> have this, either.

Ooops, it was my mistake.
I meant "Multiple Chemical Sensitivity" (MCS).

> Re: Multiple Chemical Allergy, I think in the USA we
> call it MCS, Multiple Chemical Sensitivities. I don't
> have this, either.

I understand what you are talking.
While I don't have allergy, except house-dusts
I have strong reaction for some foods, such as
crab, (...i vomit when i take it... it happened
twice and i avoided this since then... i consider
"twice" is "not coincidence"...)

>
> At any rate, assuming a person is not allergic or in
> some say sensitive to the fillers or whatever, then
> probably reasonable doses of vitamins and minerals
> will not hurt.

Yes. One more point.
What we have to careful is the quality of the products.

>But reasonable depends on the person
> and the vitamin. There have been some cases even with
> water soluble vitamins (I think one of the B vitamins)
> that caused some peripheral neuropathy (tingling or
> numbness in the extremities).

Right. Because the extracted (?) vitamins/minerals are
already "chemicals". (...NOT natural, i meant "not exactly
the same as the one when we are taking them from
foods...)
The same thing can be said in Chinese medicine.
(...extracted form is "not" natural already...)

>
> I'm not sure I understand this, exactly, but I think it's similar
> to what I was saying. I'll try it again just to be clear. There
> were two basic ideas. (again, just my ideas, I have no medical
> expertise, I'm just a patient struggling to get better)
>
> Idea number 1:
>
> Adjust all vitamins, minerals, and prescriptions according to
> the individual symptoms of the person. Don't assume that a pill
> that helps one ME/CFS patient will work for another one. I agree
> with this idea completely. It was the main point of my first
> email. It was only when I figured out the triggers for my own
> symptoms (in my case, a drop in blood pressure, caused by my
> Neurally Mediated Hypotension) that I found any treatments that
> worked for me (salt, midodrine, fludrocortisone, etc.).

I agree with you.
We need "individual adjustment".

>
> Idea number 2:
>
> A patient can try vitamins or minerals that are supposed to be
> good in general for health, or supposed to help people with CFS,
> to see if it will help. This approach, trying treatments that
> have worked for other people with ME/CFS, has NOT worked very
> well for me. But it might work for others.

Right.

>
> Anyway, I hope this makes sense. I wish you lots of luck in your
> search for any vitamins or minerals that would help you.

Thank you :-)

> I don't know where to start looking.

Honestly speaking, "neither do I"....
But, I think I need "alternative" way so, I must find it.

> I agree that most doctors don't know and don't really care
> much about nutrition at all.

I don't think Japanese doctors care much about
nutrition either. Well, they are professionals for
"medication" so....
Nutrition field is rather "environmental medicine"
(i name it...) and probably the field is different...
(...both are the same medicine though...)

More later....

Big Hugs,
Rika

Rika Kageyama

2005-08-10, 11:51 am

Hi Bobbie,

> "RP" is what?

Again, sorry, I forgot to write its full name.
As I explained in one of my replies to other members,
"RP" stands for Relapsing Polychondritis.

> Ok finally getting around to the list.
>
> I take second thing in the morning a
> measure of undenatured whey protein (for theraputic
> benefit it should be taken on an empty stomach).
>
> With my breakfast an hour later I take:
>
> One multimineral capsule repeated before lunch and
> in evening
>
> One Vitamin C time release 500 mg capsule repeated in
> afternoon.
>
> One 500 mg Niacinamide capsule repeated as the
> multimineral capsule.
>
> One B-50 capsule repeated as the multimineral capsule
>
> One dose of Cod liver oil
>
> In addition I take Magnesium Malate one 1000 mg
> tablet daily, a fish oil capsule(will be going of these).
>

I see... I now understand the meaning of "time"
for taking vitamins/minerals...
It is not common idea in Japan.
So, I did not understand its meaning...
Thank you VERY MUCH !

> and on my physician's instructions for my osteoporosis
> I am taking 3 500 mg calcium ascobate in divided doses during
> the day. Total calcium dose for the day is about 1500 mg.

You have already take Magnesium,
so, that suppose to work for osteoporosis.

>
> And I am taking taurine 500 mg twice or three times
> a day which seems to help my mood swings and lets me
> sleep at night.
>
> I used to take a very good multivitamin capsule but it
> was expensive and I wanted to take the cod liver oil so
> I gave up the multimineral which contained lots of the
> vitamins in the cod liver oil to go on my present regime.

I see... You always have good reasons.
(I mean, that is VERY important!)

>
> In addition to this I have several prescription meds
> and use a big tray that hold seven smaller 4 compartment
> trays to hold my supplements and medication.
>

I am looking forward to hearing from you.

Take care....

Hugs,
Rika

Rika Kageyama

2005-08-10, 11:51 am

> I have never had nausea or dizziness on this, and the quality is
> very high. There are also several Thorne multis called "Basic
> Nutrients" with a Roman numeral after it; some have copper
> and iron, and some don't.

That is another help, Andrea :-)

>
> One supplement I am strongly convinced is helpful to everyone
> over 30, and probably everyone with CFIDS, is CoQ10 (aka
> Coenzyme Q-10, or ubiquinone). It is a real workhorse in the
> body, plays many roles. But the ones that have the strongest
> evidence are heart muscle, gum tissue, and mitochondrial energy
> production (which we know is poor in CFIDS).

I remember that CoQ10 improved my energy level.
Yeah... I now recall that CoQ10 works for the
heart muscles... Yes. Thank you !
I will put it to my "re-consider-box".

> The oil or gel capsule form is better than the dry form.
> I get mine from www.lef.org (NAYY...) I take 100 mg daily
> of the high-absorption form, which I consider a minimum.
> Some people need to take 300 mg daily to see an effect.

Yes. I remember that I raised the dosage from 100 mg to
300 mg. (...300mg worked...)

> I've been taking it for over a decade, mostly for the
> mitochondrial energy, but can happily report that it has
> cleared up the gingivitus that was getting started back then.
> I also love the new Mitochondrial Energy formulation from
> LEF, and their Cognitex formula for brainfog.
> They really work for me.

I believe Dr. Kuratsune's group (...leader of CFS in Japan...)
has studied Mitochondrial energy problem for long years.
(...i recall his study weighs on brain function recently more
than before...) Sorry but I am not sure about it due to the
sequence of "strange episodes" which has started since
3 years ago....

>
> Considering the RP, Rika, you might want to go to
> www.lef.org or www.lifeextensionvitamins.com,
> and look up "Arthromax". I take it for my arthritis,
> and it has also helped a few cartilage problems
> such as plantar fasciitis.
> It has glucosamine and MSM, as you might expect,
> but also some unique anti-inflammatory ingredients.

I will visit the web as soon as I will afford it, Andrea.
I need to look at them.

> Hope this helps!

Hey, needless to say....
Thanx for your great help! :-)

Big Hugs,
Rika

Nancy Harris

2005-08-10, 5:49 pm

Nancy Harris wrote: Hi Rika, yes I too who have CF have had good luck
with LEF (Life Extension) and regularly order from them. and take many
of the things that you mention, including CoQ10.

Rika Kageyama wrote:

>
>That is another help, Andrea :-)
>
>
>
>
>I remember that CoQ10 improved my energy level.
>Yeah... I now recall that CoQ10 works for the
>heart muscles... Yes. Thank you !
>I will put it to my "re-consider-box".
>
>
>
>
>Yes. I remember that I raised the dosage from 100 mg to
>300 mg. (...300mg worked...)
>
>
>
>
>I believe Dr. Kuratsune's group (...leader of CFS in Japan...)
>has studied Mitochondrial energy problem for long years.
>(...i recall his study weighs on brain function recently more
>than before...) Sorry but I am not sure about it due to the
>sequence of "strange episodes" which has started since
>3 years ago....
>
>
>
>
>I will visit the web as soon as I will afford it, Andrea.
>I need to look at them.
>
>
>
>
>Hey, needless to say....
>Thanx for your great help! :-)
>
>
>Big Hugs,
>Rika
>
>
>

e_j_anderson@juno.com

2005-08-11, 5:47 pm

Andrea wrote:
"One supplement I am strongly convinced is helpful to everyone over 30,
and probably everyone with CFIDS, is CoQ10 (aka Coenzyme Q-10, or
ubiquinone). It is a real workhorse in the body, plays many roles. But
the ones that have the strongest evidence are heart muscle, gum tissue,
and mitochondrial energy production (which we know is poor in CFIDS).
The oil or gel capsule form is better than the dry form. I get mine
from www.lef.org "

I agree with this. I stopped taking it once, and I felt the difference, so this is one I will not do without. I also get it from lef.org. I used to use Carlson Labs, and that is good too. Supposedly the lef variety is more absorbable. \
Eric

___________________________________________________________________
Try Juno Platinum for Free! Then, only $9.95/month!
Unlimited Internet Access with 250MB of Email Storage.
Visit http://www.juno.com/value to sign up today!

e_j_anderson@juno.com

2005-08-12, 8:48 am

Rika,

Hello! To answer your question about Cheney, he developed idiopathic cardiomyopathy. His heart went bad, and he had to quit his practice treating CFS patients, and have a heart transplant. (!)

Now his health is improved, and he is getting back into medicine. He was supposed to give a big lecture in Texas, and I preordered the videotape. I still haven't received it, but I am looking forward to his thoughts.

I do know that he thinks CFS often has heart problems and this is the cause of severe prolonged fatigue after exertion. He points to a study published a few years ago showing a clear difference in cardiac output between normal people and those with CFS wh
o have post-exertion fatigue. The heart pumps about 2 liters less per minute in the CFIDS patients, and this was not even the sickest patients. The results were highly statistically significant.

I started to have strange heart symptoms myself about 18 months ago. My heart used to skip beats a lot. That hasn't happened lately, but I am having more periods of feeling faint. I think it is orthostatic intolerance.

Anyway, Cheney believes the mitochondria in the heart muscle are messed up. Probably an infection, and probably viral. And he thinks that the symptoms of CFIDS help us preserve the heart so that the heart does not totally deteriorate and fail. Which is so
mewhat plausible -- we get so sick and have to lay down, and this rests the heart. Other people who didn't get those symptoms might press further, and injure their hearts.

I don't know if all this is true, but he still has many good ideas, and I'm looking forward to going over the tape.

I hope this assauges your curiosity. :-)

Best wishes,
Eric

___________________________________________________________________
Try Juno Platinum for Free! Then, only $9.95/month!
Unlimited Internet Access with 250MB of Email Storage.
Visit http://www.juno.com/value to sign up today!

Rika Kageyama

2005-08-12, 8:48 am

Hi Nancy ! Thank you VERY MUCH ! :-)

Hugs, Rika

> Nancy Harris wrote: Hi Rika, yes I too who have CF have had good luck
> with LEF (Life Extension) and regularly order from them. and take many
> of the things that you mention, including CoQ10.

Cheryl4329@aol.com

2005-08-20, 11:46 am

In a message dated 8/7/2005 8:44:24 P.M. Eastern Standard Time,
rkageyama@dol.hi-ho.ne.jp writes:

I finished my stocks of the bottles and I am going to
order them from now on. And, the simple question raised.
(Particularly, because of my "additional" problem. But,
I assume the RP and CFS are same kind of problems
(from my view point) so, I stick with you, (or, let me
stick with youuuuuu !!!!) "the super knowledgeable
guys" here :-)

Hello Rika,
I would like to know what the letters RP in
your message above stand for. Is it another
illness that you have?

Thank you and Welcome to the group.

Cheryl

bobbie sellers

2005-08-20, 11:46 am

Hi Cheryl4329@aol.com, kn 08/20/05, you wrote:

C> In a message dated 8/7/2005 8:44:24 P.M. Eastern Standard
C> Time, rkageyama@dol.hi-ho.ne.jp writes:

C> I finished my stocks of the bottles and I am going to
C> order them from now on. And, the simple question raised.
C> (Particularly, because of my "additional" problem. But,
C> I assume the RP and CFS are same kind of problems
C> (from my view point) so, I stick with you, (or, let me
C> stick with youuuuuu !!!!) "the super knowledgeable
C> guys" here :-)

C> Hello Rika,
C> I would like to know what the letters RP in
C> your message above stand for. Is it another
C> illness that you have?

C> Thank you and Welcome to the group.

C> Cheryl

I asked the same question and if you read forward in
Rika's post you will find the answer is "Relapsing
Polychrondritis". Most likely it is responsible for her
symptoms and occasioned perhaps by overdoses of cortisteroid
during a adolescent illness, prescribed by a physician.
But keep reading and you will get more of the story

later
Bobbie Sellers

--
bobbie sellers - an exhausted, retired nurse in San Francisco
bliss at california dot com

Admiration: Our polite recognition of another's resemblance
to ourselves.

Rika Kageyama

2005-08-21, 11:48 am

Hi Bobbie

Thank you very much for your beautiful
summarization ! :-)

More later....

Hugs,
Rika

bobbie sellers wrote:

> I asked the same question and if you read forward in
> Rika's post you will find the answer is "Relapsing
> Polychrondritis". Most likely it is responsible for her
> symptoms and occasioned perhaps by overdoses of cortisteroid
> during a adolescent illness, prescribed by a physician.
> But keep reading and you will get more of the story
>