Re: List of supplements for MCS - RICH

[Guest guest]

Hi Rich,

My MCS has worsened over winter and I seem to be constantly

ill with viruses. I'm very keen to see what's on that list

of supplements for treating Multiple Chemical

Sensitivities. Has it been posted? Can you provide a link

to the info, or a copy of the list please? I'm severely

limited to what I can consume,and find I cannot take many

of the supplements recommended for CFS due to intolerance.

Rather a catch-22. Maybe there's something on this MCS

supplement list that will help.

Many thanks for all your help,

Jan (Australia)

--- rvankonynen <richvank@...> wrote:

>

> Hi, , Kathy and the group.

> ......

>

> At the AACFS conference, Prof. Marty Pall passed out a

> list of

> supplements that he and Dr. Grace Ziem have put together

> for

> treating multiple chemical sensitivities. It includes a

> list of

> bioflavonoids among other things, but I don't see

> hesperitin or

> hesperidin in this list. Marty participates in the

> cfs_research

> list, if you want to talk to him about it directly.

>

> Rich

>

>

> > Hi, Did anyone ever respond to this message? It was

> posted when

> Rich was busy preparing for conference. Has Dr. Pall

> used it?

> Thanks, Kathy

> >

> >

> > From: " kevin_be2001 " <kevin_be2001@y...>

> > Date: Mon Oct 4, 2004 5:48 am

> > Subject: Hesperetin: a potent antioxidant against

> peroxynitrite.

> >

> >

> > ADVERTISEMENT

> >

> >

> >

> > Hi all,

> >

> > I found an abstract about Hesperetin being able to

> scavenge

> > peroxynitrite, unfortunately it doesn´t mention a

> dosage that would

> > be suitable for humans with excessive peroxynitrite

> activation.

> >

> > Does anyone have an idea on what a good dosage would

> be?

> >

> > Take care,

> >

> > _R

> >

> >

> >

> > Free Radic Res. 2004 Jul;38(7):761-9.

> >

> >

> > Hesperetin: a potent antioxidant against peroxynitrite.

> >

> > Kim JY, Jung KJ, Choi JS, Chung HY.

> >

> > College of Pharmacy, Aging Tissue Bank, Pusan National

> University,

> > Gumjung-gu, Busan 609-735, South Korea.

> >

> > Peroxynitrite (ONOO-) is a reactive oxidant formed from

> superoxide

> > (*O2(-)) and nitric oxide (*NO), that can oxidize

> several cellular

> > components, including essential protein, non-protein

> thiols, DNA,

> > low-density lipoproteins (LDL), and membrane

> phospholipids. ONOO-

> > has contributed to the pathogenesis of diseases such as

> stroke,

> > heart disease, Alzheimer's disease, and

> atherosclerosis. Because of

> > the lack of endogenous enzymes to thwart ONOO-

> activation,

> > developing a specific ONOO- scavenger is remarkably

> important. In

> > this study, the ability of hesperetin

> (3',5,7-trihydroxy-4-

> > methoxyflavanone) to scavenge ONOO- and to protect

> cells against

> > ONOO- and ROS was investigated. The data gained show

> that

> hesperetin

> > can efficiently scavenge authentic ONOO- . In

> spectrophotometric

> > analysis, the data revealed that hesperetin led to

> declined ONOO- -

> > mediated nitration of tyrosine through electron

> donation.

> Hesperetin

> > exhibited significant inhibition on the nitration of

> bovine serum

> > albumin (BSA) by ONOO- in a dose-dependent manner.

> Hesperetin also

> > manifested cytoprotection from cell damage induced by

> ONOO- and

> ROS.

> > The present study suggests that hesperetin is a

> powerful ONOO-

> > scavenger and promotes cellular defense activity in the

> protection

> > against ONOO- involved diseases.

> >

> > PMID: 15453641 [PubMed - in process]

> >

> >

[Guest guest]

Hi, Jan.

Here's a message that Prof. Marty Pall posted recently on the

cfs_research list:

" Sorry to be so slow in responding to your inquiry. I am, as I think

you know, a Ph.D., not an M.D. so I do not give medical advice. I

was asked by Dr. Grace Ziem over a year ago, to suggest a treatment

protocol for her MCS patients and drew a a protocol which has

undergone some minor changes since that time. She had it compounded

by Key Pharmacy in Kent Washington (even though she is located in

land across the U.S.) and is currently using it with her

patients. She has reported to me on three occasions that she is

getting quite favorable results with this protocol. Key Pharmacy has

a web site that can easily be accessed and lists an email address and

toll free telephone number (within the U.S. and Canada). They call

this protocol their " neural sensitization protocol. " It has not been

tried with CFS or fibromyalgia patients so I cannot comment on that

but my overall impression is that CFS and fibromyalgia should be more

easily treatable than MCS, so I would expect that it would work well

there -- that is an expectation, and may of course be wrong. The

protocol needs to be prescribed even though most of the components in

it are available over the counter.

If you want to look into this, I would suggest emailing Key Pharmacy

and asking them to email you information on their neural

sensitization protocol.

Again, this should be viewed as information, not medical advice.

Marty "

Jan, the email address for Key Pharmacy is info@....

Ask them what is in their " neural sensitization protocol. " If you

don't get any help from them, I will type in what I have. It's two

pages long. I'm assuming that what I have on this handout is the

same thing that they are formulating, but it doesn't specifically

say that on this handout. I picked up so many things at the meeting

that it's hard to be sure that this handout is exactly the same

thing that Marty is referring to in his post, but I think it is.

Rich

> Hi Rich,

>

> My MCS has worsened over winter and I seem to be constantly

> ill with viruses. I'm very keen to see what's on that list

> of supplements for treating Multiple Chemical

> Sensitivities. Has it been posted? Can you provide a link

> to the info, or a copy of the list please? I'm severely

> limited to what I can consume,and find I cannot take many

> of the supplements recommended for CFS due to intolerance.

> Rather a catch-22. Maybe there's something on this MCS

> supplement list that will help.

>

> Many thanks for all your help,

>

> Jan (Australia)

[Guest guest]

Hi all,

I found a list of supplements that prof. Pall used in trial study

for cfs patients.

This text was posted on a cfs newsgroup in 2001, I will post it here

below.

Take care,

_R

Note to people inquiring about our clinical trial/pilot study:

L. Pall, Professor of Biochemistry and Basic Medical

Sciences, Washington

State University

I am a Ph.D, not an M.D. and cannot give medical advice. The

information given

below should not be construed as advice and anyone interested in

possibly taking

nutritional supplements because they have chronic fatigue syndrome

(CFS) or a

related condition are urged to consult with their physician before

doing so.

The trial/pilot study was done with a group of CFS/fibromyalgia (FM)

patient/volunteers, mostly in the Tri-Cities area of Washington

State and was

organized by me and by Dr. Albert G. Corrado of Richland

Washington. The list

of supplements and the dosage is given below. The supplement list

was chosen

based on my elevated peroxynitrite theory of CFS but is QUITE

SIMILAR to

supplements used earlier by Drs. Cheney and Rigden and

also by some

other physicians. However it should be easier for

patients/physicians to try

to follow our trial protocol rather than the Cheney or Rigden

protocol because

no difficult to obtain nutrients are included here and we did not

attempt to

develop an individual treatment for each patient, as I believe that

Cheney does.

The results, based on a self-assessment questionaire filled out by

participants

were as follows:

1. Most participants, including many who reported symptoms of

multiple chemical

sensitivity, were able to tolerate the supplements quite well.

However, some

who had problems with GI tract sensitivity had difficulty tolerating

some

supplements - especially the citrus bioflavonoids and

calcium/magnesium

supplement. Because GI tract sensitivity is fairly common in CFS

patients, this

may be a problem in a substantial minority of patients.

2. Almost all participants reported an improvement in symptoms,

albeit a modest

improvement. Because this was NOT a placebo-controlled trial,

placebo effect

cannot be ruled out. Still, many patients reported quite specific

improvement

of some symptoms, such as a substantial improvement in the ability

to sleep

through the night with some consequent improvement in symptoms. Most

participants who completed the final questionaire stated that they

intended to

continue on these supplements. It should be pointed out that no

participants

claimed that they were cured or even that they had experienced a

major

improvement in symptoms. So, modest improvement was the best

description.

3. I see this as, perhaps, the first step in a process towards

developing an

effective treatment along the lines predicted by the elevated

peroxynitrite

theory. Unfortunately the most attractive approach would be to use

an effective

peroxynitrite scavenger and, unfortunately although some scavengers

exist,

someof which were used here, they are not terribly effective at

concentrations

that can be achieved in vivo. One agent that has been used to treat

CFS that

may act by a mechanism predicted by my theory is cobalamin (vitamin

B12, in the

form of hydroxocobalamin or cyanocobalamin injections) because

hydroxocobalamin

is known to scavenge nitric oxide (one of two precursors of

peroxynitrite) and

cyanocobalamin is converted by human cells into hydroxocobalamin.

4. One difficulty that we had is that nutritional supplements are

not

effectively regulated in the U.S. and there have been multiple

reports of

supplements being sold that do not containing the compounds or the

dose listed.

This may be less of a problem in Europe. The supplement used here

were ordered

by the participants from Nutrition Headquarters (Puritan's Pride)

and one

wonders whether similar supplements obtained from other sources may

have been

either more or less effective.

5. This trial was completed at 150 days but all participants opted

to continue

taking the supplements at the end of that period. Participants had

no

obligation to communicate further after the end of the trial, but

several have.

One woman, after about 13 months, reported that she was " almost

normal. " A man

on the trial reported that he still suffered from CFS symptoms but

was able to

take on substantially increased responsibilities. His cognitive

function seemed

to be much improved over what it was at the start of the trial. One

woman who

was unable to tolerate many of the supplements reported substantial

improvement

after about 13 months. So there may be some hope for continued

improvement over

an extended period of time.

Our participants were directed as follows: you should be taking a

multivitamin

supplement of your choice plus whatever medications have been

prescribed or

recommended by a physician. The approach used here is to start

taking one

supplement on the first day, adding an additional supplement with

each

additional day, until all supplements are being taken. However, if

you appear

to have a negative reaction to any supplement, discontinue taking

that

supplement while continuing with the others. Consult with Dr.

Corrado

(509-943-6126) about any negative reactions to any of the

supplements. There

should be enough of each supplement to last the 150 days of the

complete trial -

some will last longer. Many of the supplements are to be taken

shortly after

breakfast - if you do not eat breakfast on a particular day, take it

after lunch

instead.

Day 1: Begin taking the selenium supplement, 200 micrograms, one

per day after

breakfast.

Day 2: Add the vitamin C supplement, 250 mg. one per day after

breakfast.

Day 3: Add the E-complex (vitamin E; alpha, beta, gamma and delta-

tocopherol),

200 IU, one per day after breakfast.

Day 4: Add the N-acetyl cysteine, 600 mg, one per day after

breakfast.

Day 5: Add the coenzyme Q-10, 75 mg one per day after breakfast.

Day 6: Add the copper, 2 mg tablets, one half tablet per day (cut

each tablet

in half), after breakfast.

Day 7: Add the citrus bioflavonoids, 1 g. tablet, one half tablet

twice per day

(cut the tablets in half), one taken after breakfast and one taken

after supper.

Day 8: Add calcium/magnesium/zinc, two tablets per day, one taken

after

breakfast and one taken after supper.

Day 9: Add L-lysine, 500 mg each, two tablets per day, one taken

after

breakfast and one taken after supper.

Day 10: Add Ginkgo biloba extract, two 60 mg tablets per day, one

taken after

breakfast and one taken after supper.

Day 11: Add bilberry extract, two 60 mg tablets per day, one taken

after

breakfast and one taken after supper.

Day 12: Add milk thistle extract, 70 mg each (silimarin), two

tablets per day,

one taken after breakfast and one taken after supper.

Day 13: Add alpha-lipoic acid (100 mg each), two tablets per day,

one taken

after breakfast and one taken after supper.

Day 14 and forward: Continue taking all well-tolerated supplements

until 150

days are finished.

> Hi Rich,

>

> My MCS has worsened over winter and I seem to be constantly

> ill with viruses. I'm very keen to see what's on that list

> of supplements for treating Multiple Chemical

> Sensitivities. Has it been posted? Can you provide a link

> to the info, or a copy of the list please? I'm severely

> limited to what I can consume,and find I cannot take many

> of the supplements recommended for CFS due to intolerance.

> Rather a catch-22. Maybe there's something on this MCS

> supplement list that will help.

>

> Many thanks for all your help,

>

> Jan (Australia)

[Guest guest]

> Hi Rich,

>

> My MCS has worsened over winter and I seem to be constantly

> ill with viruses. I'm very keen to see what's on that list

> of supplements for treating Multiple Chemical

> Sensitivities. Has it been posted? Can you provide a link

> to the info, or a copy of the list please? I'm severely

> limited to what I can consume,and find I cannot take many

> of the supplements recommended for CFS due to intolerance.

> Rather a catch-22. Maybe there's something on this MCS

> supplement list that will help.

>

> Many thanks for all your help,

>

> Jan (Australia)

>========================

Hi Jan,

This was so easy. I just emailed Key Pharmacy and asked if they

would/could send me their protocol to which the replied.

Their comment was it was not FDA approved and ofcourse one needs a

prescription for the stuff. But after reviewing the list, most you

can come up with yourself. They did say it takes about 1 to 2 years

of being on the protocol to turn things around.

Well, if you haven't already emailed them for the protocol or incase

others are interested in what it is, here it is: BTW, they said the

glutathion, NSP, vitamin E, and b12 are the primary things.

Glutathione 60 mg/ml inhaled orally through a nebulizer, 2 ml twice

daily. AS well as nasal spray, 1-2 sprays in each nostril, 3-4 times

a day and 15-30 minutes before anticipated exposure to known airborne

toxins, and/or with exposure use every 15-30 minutes until symptoms

subside.

NSP Basic Formula, 3 capsules twice daily

Vit. E, 500IU. once a day

B12 3000-5000 mcg/drop, one drop sublingually daily

B12 500 mcg/spray, 1 spray in each nostril 2-3 times daily and with

exposures use every 20-30 minutes until symptoms subside.

Selenium 100 mcg/ml nasal spray, 1-2 sprays in each nostril twice

daily

Strontium chloride 1 mg/ml nasal spray, 1-2 sprays in each nostril

every 4 hours as needed

TRH 5 mcg/spray, 1 spray in each nostril twice daily

For more information you can call them at(206) 878-3900 or 800-878-

1114.

I hope I got that all right. They also sent a list of what was in

the NSP basic formula. It's a combination of vitamins, antioxidants,

minerals and herbs.

Gail N.

>