Re: FAQs? (long)

[Guest guest]

WOW! This is an incredible amount of information! Thank you very, very

much. In my current state I'm going to have to print it out and go

through it several times, but I can tell already it's going to be useful.

Note: candtcampbell sent me the following post in response to my

suggestion for FAQs. I'm re-sending it to the list, so others may see

and add their comments.

Marcia on

***********************************

From: candtcampbell@...

Subject: Re:FAQs?

Date: January 28, 2007 12:13:36 PM EST

& #65532;The following is a summary of email communications shared among

approximately 1000 CFS and Fibromyalgia patients from most of the

western world, via a list called hosted by

. A few local items are included. Comments,

corrections, criticisms, etc. are welcome.

GENERAL INFORMATION

Interpretation of lab tests may be easier if you look at

bloodbook.com/ranges.html or labtestsonline.org or labtestsonline.net.

There's a good biology textbook at

http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/. Free access

to medical journal articles may be available at

http://highwire.stanford.edu.

Sierra Integrative Medicine in Reno, NV is at (775) 828-5388,

sierraim.com. They provide outpatient homeopathic treatment for a

variety of immune-related diseases. The treatment is expensive and

painful, but safe and sometimes effective.

For some PWCs, Mark Konlee's book titled " Reversing Immune

Dysfunction " may be helpful. See www.execpc.com/~keephope for details.

Good CFS treatment websites: http://lassesen.com/cfids;

http://64.45.50.181/idef; www.virtualhometown.com/dfwcfids;

www.ncf-net.org; beatcfsandfms.org; cfsresearch.org; cfs.inform.dk;

and www.cpts.com/townhall.

Dr. Teitelbaum's comprehensive website is endfatigue.com. He has a

treatment algorithm he sells access to, but it's free for those on

Medicaid. He says if you take DHEA, it should be a pharmaceutical

brand. For sleep, he recommends Enzymatic Therapy's formula that

contains theanine, hops, Jamaican dogwood and wild lettuce. Ambien

followed by Trazodone are his recommendations for prescription sleep aids.

Vrchota specializes in CFS and FM at Integrated Health Care of

Winona, MN. Her website is karenvrchota.com.

Dr. Enlander is quite good. He collaborates with Dr. Kerr of

London on gene expression studies. His website is enlander.com and his

email address is DEnlander@....

Dr. Kenny DeMeirleir, the Belgian cardiologist/endocrinologist/CFS

specialist, believes it is important to test for elastase and serum

antibodies to gut bacteria. His website is redlabsusa.com.

Burton Goldberg's alternative medicine website is

www.alternativemedicine.com. He may answer email at

burton@....

Good overviews are at cfsyndrome.com/drandrew.html and

thorne.com/altmedrev/.fulltext/5/2/93.html.

A chiropractor, Dr. Lowe, wrote an excellent book called " The

Metabolic Treatment of Fibromyalgia " at drlowe.com. Dr. Myhill's

book " Diagnosing and Treating Chronic Fatigue Syndrome " is available

for free download at www.afme.org.uk/info/myhill.shtml. Myhill's

website is drmyhill.co.uk. She offers a package of ATP tests for œ175,

run by Acumen labs which is associated with Biolab. The package

includes the ATP test, CoQ10, NAD, cell free DNA, SODase, and Mg.

Tapes of some of Dr. Cheney's lectures are available from

www.treefarmtapes.com. A transcript of one of his videos can be read

at http://members.cox.net/dsleffel/cheney/cheneyII3.html. There is a

transcript of a good Cheney lecture at

geocities.com/BobJoyX/cheney.htm. The Cheney Clinic is now at One

Vanderbilt Park Drive, Suite 230, Asheville, NC 28801. The phone

number there is 828-274-6665; fax 828-274-6917. Stay at the nearby

if you are lucky enough to see Dr. Cheney. He may be

willing to answer questions posted at cfsnutriceuticals.com, and will

be selling a 4-CD set covering diagnosis, treatment, disability

adjudication and new horizons. Also try calling 828-648-0307.

Dr. Larry Sharp in Dallas-Ft.Worth does Cheney's bike test with

cortisol and growth hormone measurements. The company he contracts

with to do the test accepts whatever your insurance company pays. He

is at cfidsdoctor.com, 817-246-7676. He works at one of the several

Fibromyalgia and Fatigue Centers around the country. Find one near you

at fibroandfatigue.com, 866-443-4276. You can get AMP injections there.

Dr. Cheney recommends the following doctors if you can't see him:

Dan

Sierra Internal Medicine Associates

865 Tahoe Blvd., Suite 306

P.O. Box 7870

Incline Village, NV 89492

775-832-0989

Donn Gaudin

Canadian Center of Integrated Health Studies

Toronto, Canada

416-922-0006

www.clinicaltrials.gov lists all the clinical drug trials currently

underway for all diseases, as does centerwatch.com. CFS clinical

trials are listed at cfids.org/about-cfids/clinical-trials.asp. If you

want to be in an NIH study, search at http://clinicalstudies.info.nih.gov.

In Australia, the best research is being done at the University of

Newcastle. Surf www.newcastle.edu.au/department/bi/birjt/cpruis for info.

For those who are trying to care for children with CFS, a helpful

website is http://home.bluecrab.org/~health/sickids.html.

Dr. Pall is a researcher at Washington State University who

has a peroxynitrite theory of the origin of CFS. His new book is

called " Explaining Unexplained Illnesses. " In addition to a

multivitamin and hydroxycobalamin injections (discussed below), his

treatment program is as follows (list is sequential to identify any

intolerances; omit any that cause reactions):

Day 1: Begin taking 200mcg selenium supplement, one per day after

breakfast.

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

Day 3: Add 200 IU E-complex (vitamin E; alpha, beta, gamma and

delta-tocopherol), one per day after breakfast. The forms of vitamin

E used here may be important.

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

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

Day 6: Add 1mg copper, one per day after breakfast.

Day 7: Add 500mg citrus bioflavonoids, two per day, 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 per day, one taken after

breakfast and one taken after supper.

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

breakfast and one taken after supper.

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

breakfast and one taken after supper.

Day 12: Add 70mg milk thistle extract (silimarin), two per day, one

taken after breakfast and one taken after supper.

Day 13: Add 100mg alpha-lipoic acid, two 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.

If you don't want to buy and take the above supplements individually,

but you want to jump right in to the full Pall protcol, you can have

Key Pharmacy in Kent, WA compound a nearly identical NSP (neural

sensitization protocol) formula for you. They are at 800-878-1114 or

800-878-1322, KeyNutritionRx.com. Their formula's ingredients are as

follows:

Ascorbic Acid 250mg, Selenium Yeast 200mcg, Coenzyme Q-10 75mg, Alpha

Lipoic Acid 600mg, Zinc 15mg, Copper 1mg, Manganese 1mg, Magnesium

250mg, Betaine 500mg, Ginkgo Biloba extract 120mg, Silymarin (Milk

Thistle Extract) 140mg, Bilberry Extract 120mg, Cranberry Extract

400mg, Carotenoid Mixture (lycopene, beta-carotene, and lutein 5mg

each). Take 1 capsule daily with food to start, then increase

gradually as tolerated up to 3 capsules twice daily with food.

In addition, patients on the compounded formula should take Vitamin E

from mixed tocopherols (d-Alpha, Beta, Gamma, & Delta tocopherol) as a

separate supplement, 500 IU once a day.

Dr. Pall's protocol now also includes buffered glutathione 60mg/ml

inhaled orally through a nebulizer (but not if you are asthmatic), 2ml

twice daily (up to 10ml is safe); glutathione nasal spray, 1-2 sprays

in each nostril, 3-4x per day and 15-30 minutes before anticipated

exposure to airborne toxins, or with exposure every 15-30 minutes

until symptoms subside; 3 to 5mg B12 sublingual daily; 500 mcg B12

nasal spray 2-3x daily or 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 2x daily. Key Pharmacy will supply or compound most if not all

of these ingredients. It takes 1 to 2 years on the protocol to turn

things around. If you want to make your own glutathione solution for

the nebulizer, use L-glutathione Plus from thenaturals.com or other

buffered form. Dissolve the contents of one capsule in 3 to 4cc of

sterile water.

Dr. Grace Ziem's MCS protocol now includes:

By nebulizer: reduced glutathione, hydroxocobalamin, folic acid.

By nasal spray: reduced glutathione and hydroxocobalamin, when needed.

Orally: betaine (trimethylglycine), taurine, P-5-P, magnesium, folic

acid, ascorbic acid, selenium, coenzyme Q-10, riboflavin-5-phosphate,

zinc, copper, manganese, gingko biloba extract, silymarin (Milk

Thistle extract), bilberry extract, cranberry extract, lycopene,

beta-carotene, lutein, acetyl-L-carnitine, mixed tocopherols, and

alpha lipoic acid.

RELATED DIAGNOSES

A comprehensive list of conditions related to CFS can be found at

semaphorecorp.com/misc/cfs.html.

A diagnostic computer program is available at diagnose-me.com. The

extensive questionnaire can be interpreted by a naturopath,

chiropractor or allopathic physician. You may be able to access the

database for free by typing your symptoms into a Google search box.

Diastolic cardiomyopathy

Dr. Cheney is actively investigating the diastolic cardiomyopathy

universally found in disabled PWCs. The cell-signaling factors found

in fetal pig heart forms the cornerstone of his experimental treatment

protocol. He also prescribes the Standard Process Mediherb brand of

hawthorne extract (#M1330), which is a traditional heart tonic.

If you can't see Cheney but want to get an impedance cardiogram, call

CardioDynamics at 800-778-4825, cdic.com to see which doctors or

clinics have the machine.

Although Dr. Cheney has reservations, some cardiologists feel that 3

teaspoons a day (3 times 5g) of d-ribose is helpful for the heart.

Best price for d-ribose is at beyond-a-century.com or

swansonvitamins.com. Drs. Myhill and Sinatra recommend a

daily dose of 300 to 360mg CoQ10, 2 to 3g of L-carnitine, 400 to 800mg

of magnesium, and 500mg of niacinamide, all in divided doses (3x a day

is good).

EECP is physical treatment for heart failure available at

Bravermancenters.com or the International EECP Therapists Association.

Porphyria

Porphyria is sometimes a cause of the symptoms of CFS. Read more at

http://wsrv.clas.virginia.edu/~rjh9u/aip.html.

Methylation

Methylation is a fundamental metabolic process that may need support

in some patients. Thorne's Methyl-Guard may be helpful.

Cell Membrane Malformation

Dr. Les Simpson has studied red blood cell shape abnormalities in

CFS. His email address is rbc.research.limited@.... Or write to

Red Blood Cell Research Limited, 31 Bath Street, Dunedin, New Zealand

9001. He will analyze your red blood cells for US$40. The usual

treatment is Efamol marine, a combination of fish oil and evening

primrose oil. Take three 500mg capsules of Efamol with each meal for 6

months ( " Restore " from Seacoast Natural Foods at 877-229-1779,

www.seacoastvitamins.com is one source). Don't take evening primrose

oil (or any other omega 6 oil) if the Genovations immune panel shows

you have polymorphism on the gene associated with tumor necrosis

factor alpha use flax and fish oil instead, which are omega 3.

Read more about the benefits of essential fatty acids at

udoerasmus.com. Kane, Ph. D. in PA at 610-924-0600 has

developed a very precise test called the BodyBio Fatty Acid Panel that

can determine the ratio of fats each patient should consume. See

elyte.com for more info. In addition to fatty acids, she recommends

taking 8 capsules of American Lecithin Company PhosChol

(phosphatidylcholine or PC) daily with the evening meal. Reduce to 4

capsules when PC levels are determined to be sufficient. Her butyrate

comes from T.E. Neesby and her PhosChol comes from Nutrasol. Allergy

Research Group also makes butyrate. Dr. Kane also recommends 2 ampules

of IV PC called EssentialeN ($11 each) from Switzerland, followed by

9cc of IV glutathione ($2.50 per cc) from Wellness Pharmacy. If there

are any bad reactions to the glutathione, mix it with 40cc of sterile

water. Albert of Paracelsus Apoteke pharmacy in Switzerland will fax

the PC administration protocol to your doctor. Phone him at

011-41-55-4184070, fax him at 011-41-55-4184071, or email him at

paracelsus@....

Dr. Cheney is excited about a nonessential fatty acid called azelaic

acid. The dose is 2, 750mg capsules 3 times a day with food. 6 weeks

worth of capsules costs $75 at Wellness, or you can get it from Medaus

at medaus.com, 800-526-9183, fax 800-526-9184. 200 to 400mg weekly

injections of glutathione should be synergistic with azelaic acid.

A good quality liquid hyaluronic acid is available at 866-318-8484,

hyalogic.com. It treats dry skin, joints, eyes, etc. that result from

chronic inflammation.

Hypovolemic anemia

email CFSresearch@... if you want to participate in a Procrit

study.

Lyme Disease

The best Lyme Disease lab in the country is probably IgeneX in Palo

Alto at 800-832-3200. Some IgeneX tests are covered by Medicare. Other

good quality labs include Boston Biomedica at 800-866-6254, Immunology

Lab at UNY Stonybrook at 516-444-2600, and Bowen Research Institute in

Florida at www.bowen.org.

The Bowen QRIBb antigen test result is reported as a range from 1:1

to 1:128. 1:1 is healthy normal and 1:128 is highly infected with up

to 53 species of cell-wall deficient bacteria. You can use the test to

track your progress on antibiotics.

Some people feel that the Lyme test A, which includes coinfections,

is a very high quality test. It's offered by Immunosciences Lab at

immunoscienceslab.com, 800-950-4686, but is not yet FDA approved.

More info is available at www.lymenet.org or

www2.lymenet.org/domino/sg.nsf. Post your lyme test results there for

discussion and interpretation. Quest can test for C3a, which is very

high in Lyme disease. Some people think that low CD57 cells indicates

Lyme disease.

Lyme-literate MD's are members of ILADS at ilads.org. In the

southeast, jemsekclinic.com is the best Lyme treatment center.

Surprisingly, the antifungal drug Diflucan is effective against Lyme.

Take 200mg/day for 2 months. 500mg of green tea extract 2x daily

enhances the effect of Diflucan. Note that Diflucan interferes with

the detoxification of any other drugs you may be taking, and that this

treatment may only be palliative, not curative.

Samento is a type of cat's claw herb that is effective for some

people against Lyme.

Lymephotos.com describes how a daily combination of 8 to 12g of salt

and the same amount of vitamin C, spaced throughout the day with

plenty of water, can be effective against Lyme and other infections.

The target dose is 1g of each per 15 lbs. of body weight. Some

patients take up to 25g of salt and 18g of vitamin C per day. Don't

use table salt Americarx.com has CMC salt tablets for this protocol,

or you can use granulated salt from krystalwebmatrix.com or

realsalt.com. This protocol tends to be hard on the kidneys, but many

people tolerate it OK.

The homeopathic lyme remedy from Eden Health Products has been

reported effective.

Mycoplasma

The best mycoplasma test labs are:

Institute of Molecular Medicine, run by Nicholson;

Immunosciences Lab (800-950-4686), run by Vojdani;

Center for Special Immunology, run by See;

Medical Diagnostic Lab in Mt. Laurel, NJ, which has the best generic

price.

Garth Nicholson's International Molecular Diagnostics is good but

having staffing problems. Contacts are www.immed.org, 714-799-7177,

gnicimm@...

A good website that discusses Nicholson's work is

http://home.freegates.be/mycoplasma.

Dr. Stratton at Vanderbilt University is a pathologist who may be

useful to consult for advice on antibiotic protocols for mycoplasma.

A site for checking antibiotic interactions is

http://hopkins-abxguide.org.

Viral infection

Dr. Cheney now uses Commonwealth Biotechnologies at 800-735-9224,

cbi-biotech.com, to test for EBV, CMV, HHV6 and HHV7.

Insulin Potentiation Therapy has been successful for patients with

obvious viral infection. Read more at daleguyermd.com. Dr. Shantha at

iptmd.com also does IPT.

Dr. Lerner is a cardiologist who believes some cases of CFS

are caused by viral infection of the heart. His website is

cfsviraltreatment.com. His protocol involves 1) A positive test for

EBV and/or CMV; 2) finding of left ventricle cardiomyopathy on

echocardiogram; 3) A negative finding for heart tissue necrosis in a

radionuclide stress test; 4) Evidence that blood pressure drops with

increasing effort in another stress test. If Lerner finds all these,

he prescribes Valtrex and/or Valcyte for several months.

Candida albicans ( " yeast infections " )

If you have a yeast infection, Dr. Teitelbaum says to take 200mg per

day of generic Diflucan (fluconazole) for 6 weeks, which will only

cost $40 at costco.com. He says 200mg per day of lipoic acid and 500mg

of NAC will protect the liver from the effects of Diflucan.

An effective alternative to Diflucan is 10-undecenoic acid, which is

derived from castor beans. It's made by Thorne Products under the name

Formula SF722, available from DrZ.org, myvits.com, NEEDS and Sun-Ray

as given below. Thorne's Undecyn has the same ingredient as SF722,

plus grapefruit seed extract. Undecyn II is the same as Undecyn but in

smaller capsules. Yeast Avenger from cfsn.com is also effective, as is

olive leaf extract.

www.drcranton.com gives info about triple antifungal drug therapy for

persistent candida infection.

Three-Lac is sometimes effective for candida.

Saccharomyces boulardii has successfully treated internal and

external fungal problems, as well as IBS. 2 tablets of the FloraStor

brand twice a day is a good dose. Take it with a good probiotic. It

may take a month to see results.

Miscellaneous infections

The Immune Deficiency Foundation at 800-296-4433 may be helpful for

patients who have frequent, obvious infections. Their consulting

immunologist can be reached at 877-666-0866.

Cecile Jadin's website is chronicfatiguesyndrome.tv. She believes

that CFS is caused by bacterial infections that require long-term

antibiotics.

Oil of oregano called Oregacyn P73 Respiratory Support is effective

in vitro against avian flu. Take 3x daily or 2 capsules every 1 or 2

hours.

Trevor Marshall, Ph.D. is a biomedical engineer who believes that

nearly all autoimmune diseases are caused by occult intracellular

infections with a variety of cell-wall-deficient bacterial species. He

believes such diseases are characterized by elevated

1,25-dihydroxyvitamin D, interferon-gamma and lymphopenia. See

sarcinfo.com and marshallprotocol.com for more info about his theory

on the use of angiotensin receptor blockers to treat inflammation and

infection, or have your doctor call him at 805-492-3693. The

sarcinfo.com forum moderator is Meg Mangin, R.N., whose email address

is tmmangin@.... Dr. Marshall's email address is

trevor@.... Marshallprotocol.com has an urgent problems

section where urgent medical questions can be posted.

To determine whether you are a candidate for the Marshall Protocol

(MP), have your serum 1,25-dihydroxyvitamin D level tested. If it is

above the 45 pg/ml upper normal limit as defined in the Merck Manual,

and you are not pregnant, you are a candidate. The ideal level is

between 20 and 25 pg/ml. (If the level is abnormally low, it means you

have a fungal or viral infection instead.) The serum 25-hydroxyvitamin

D level is less important for determining candidacy, but for research

purposes Dr. Marshall would like you to report it anyway; ideally it

should be about 12 ng/ml (30 nmol/L), and no higher than 20 ng/ml. The

blood sample for 25-D testing need not be frozen, but the 1,25-D must

be. LabCorp does not handle the 1,25-D appropriately, but Quest does;

their CPT code for 1,25-D is 82652, and their internal code is 4729.

Quest's CPT code for 25-D is 82306, and their internal code is 680.

Just to be safe, confirm with Quest that they will be drawing one 7ml

red top tube, allowing the specimen to sit at least 30 minutes but not

longer than 3 hours, then freezing the 1,25-D sample immediately after

centrifuging. Medicare should cover the D testing if the diagnosis

code is 733.90 for osteopenia, or 733.0 for osteoporosis, or 733.00

for osteoporosis (unspecified). Other ICD codes that may help

reimbursement are 275.40 for unspecified disorders of calcium

metabolism; 275.42 for hypercalcemia; or 278.4 for hypervitaminosis D.

If you happen to already have a 1,25-D level from LabCorp that is

abnormally high, the measurement can be regarded as valid because

failure to freeze the sample results in a lower value.

Stop all supplements except vitamins C and E, and CoQ10 before

starting the MP. Remove as much sugar as possible from the diet.

Discontinue evening primrose oil. Postpone elective surgery. While on

the MP, you must avoid consumption of vitamin D (either in food or in

supplements, including fish oil), avoid iron and folic acid, avoid

yellow #5 and MSG, avoid all sunlight and wear special sunglasses

(even indoors, unless dimly lit below 30 lux [multiply foot candles by

10.8 to convert to lux], which implies blinds tightly closed on

windows that don't receive sunlight and additional opaque curtains

over those that do) described at noir-medical.com/noir_amber.htm, or

call 800-521-9746. Their models 701 and 901 are appropriate for indoor

use, and their 707 and 907 are appropriate outdoors. Independent

Living Aids has better prices on sunglasses than noir.com.

Hidalgos.com has suitable sunglasses. It's better to use incandescent

lights than fluorescent. Sarcinfo.com/zeiss.html has info for those

who need prescription sunglasses. Bolle 100s are not as good as NoIR,

but they may be more fashionable. (Light avoidance is actually

optional for some patients. If you are photosensitive before beginning

the MP, you are likely to become more so during treatment. But some

patients may not have any problem with light.) Rub Nizoral

(ketoconazole) 2% cream on your face and neck to block production of

1,25-D if you must be out during the day. For doctors who might be

concerned that such avoidance might lead to osteopenia or

osteoporosis, have them read the discussion at

sarcinfo.com/calcium.htm. If you want to take a multivitamin that

excludes D, try the products made by Nature's Life. The half-life of

25-D is 2 months. When your 25-D level is above 25 ng/ml, the effect

of antibiotics will be blocked, so you may want to be in avoidance

mode for a month or so before starting the MP. There are also a number

of drugs, particularly immunosuppressants, that are contraindicated

while on the MP, as are infrared saunas, biphosphonates (such as

Fosamax), epinephrine, potassium, lithium and calcium supplements,

and statin drugs. But hot tubs are fine. Electro-Acupuncture (such as

TENS) is OK for pain treatment, as is supplementary oxygen and the

homeopathic remedies called Traumeel or Lymphomyosot. Brand-name

Valium (1mg) is preferred to Klonopin. Since both Benicar and heparin

can reduce aldosterone production, they should not be taken

concurrently. Dr. Marshall approves Viadent Advanced Care Fresh Mint

mouthwash and microgram doses of hormones contained in birth control

pills. If you get an acute infection while on the MP, treat it with

fluoroquinolones, not beta-lactam antibiotics.

Avoid all fish, meat fats (lean is OK), eggs, mayonaise,

worcestershire sauce, anchovies, and sunflower oil. Read labels for

added D. Avoid sources of folic acid, such as white flour, white bread

and baked goods. Avoid dairy products that have been fortified with

vitamin D or A. Avoid sunscreens that contain cod liver oil. If you

must drink milk, drink unfortified skim or lowfat (very hard to find)

in limited quantities. You can check the vitamin D and other

nutritional content of foods at nutritiondata.com.

Start the Marshall Protocol with 40mg of Benicar every 6 to 8 hours.

It's probably best to take Benicar between meals.

Canadadrugsonline.com and PharmaWebGlobal.com may have a good price on

Benicar, as may the German pharmacy at pharmacy-international.de (ask

for Votum, equivalent to Benicar). Patients insured by Blue Cross may

have better access to Benicar by getting it via mail from Medco at

899-711-3450. Blue Cross/Medco-insured patients may be more likely to

get high doses of Benicar covered if only a 30-day supply (120

tablets) is ordered at a time. To receive info about group purchases

of Benicar from Canada, email Mr. Bill at benicar_cdn@.... Time

the initiation so that you are not menstruating simultaneously. Don't

take Benicar-HCT the tablets should say C-15 or C-14 on the back.

Sustained release capsules of Benicar may be available to Americans

through the Canadian pharmacies at pharmasave.com and at

hyperidrose.com/index_en.htm. (May be hyperidrosis.com.) The sustained

release formulation may allow 12-hour dosing, and it may be more

likely to be covered by insurance if compounded with magnesium oxide

or lactose. If your doctor balks at the high doses of Benicar

necessary for the MP, cite fda.gov/cder/foi/label/2002/212861b1.pdf,

as well as http://tinyurl.com/3pcy7 and http://tinyurl.com/6rqz3.

Indigent patients should surf needymeds.com/programs/sankyo.html or

call the manufacturer at 877-472-6596 to ask about their " Open Care

Program. " (Wyeth, the manufacturer of Minocin, has a similar program

you can get info about at 800-999-9384.) To avoid problems with

insurance companies questioning the higher doses of Benicar required

for the MP, ask your doctor to omit the exact dose and write " take as

directed " on the prescription. If you have to file an appeal with your

insurance company to get Benicar covered at MP doses, do not mention

the MP just ask your doctor to reassure them that he did not make a

mistake, and that Benicar is safe and effective at the prescribed

dosage. There is a letter of medical necessity that you can use on

the MP website. Costco has a good price (but they may exclude certain

states from their mail-order service), as does Consumer Discount

Pharmacy at 888-272-9834 (90 for $119). If the herxheimer reaction

from the Benicar gets too intense, you can sometimes ameliorate the

symptoms by increasing the dose frequency to every 4 hours and cutting

the dose to 20mg. Or try 40mg every 4 hours. Anyone whose 1,25-D is

over 55 pg/ml is at risk of developing bradycardia (pulse less than 50

bpm) under treatment, in which case the 40mg, 4 hour dose should be

followed. If you can't handle the herx at any dose, either stop and

wait until your 25-D level falls, or take minocycline alone for a

couple of months, then start Benicar again. If low blood pressure is

asymptomatic, there is no need to worry even if your BP drops as low

as 70/35. Nor should you worry if you develop mild hyperkalemia.

Potassium levels should be monitored if you have kidney disease.

Patients taking thyroid and Benicar should have their thyroid levels

checked weekly. Patients taking Coumadin (warfarin) should monitor

their coagulation time closely. 1,25-D levels can be measured every 6

months if desired.

Quercetin can be helpful for ameliorating the herx caused by Benicar,

but Dr. Marshall prefers that you first try increasing the frequency

of the Benicar as described above. Quercetin reduces the amount of

bacteria killed, so it is only used to manage intolerable herx. Take

400 to 500mg of pure quercetin (such as made by Nature's Life,

dynamune.com or Solaray) with each dose of Benicar, or take 200mg

every 4 to 8 hours. Stomach irritation is likely. Do not take

Quercetin if you also take chloroquine, Warfarin, Paclitaxil, Retinoic

acid, Arachidonic acid, Rifampin, Trimethoprim, Bactrim, or any other

drug that uses the CYP2C8 metabolic pathway that quercetin inhibits,

such as carbamazepine, phenobarbital, Rifabutin, Tolbutamide, or

Benzphetamine. Long-term safety of quercetin is not as good as

Benicar, but Dr. Marshall approves it if you need to reduce the herx.

Start the quercetin 4 hours before Benicar for best control. Some

patients also find Lyprinol to be effective.

It usually takes about 2 weeks to stabilize on Benicar, at which

point you should add generic minocycline. Good generic minocycline is

made by Ranbaxy (an Indian company), available at drugstore.com.

Fortunately, minocycline tends not to cause yeast infections, but it's

OK to take probiotics with it anyway. Start with 25mg every other day

(split the smallest available 50mg), and work up as tolerated to 100mg

every other day. Maintain a dose for at least one week before

increasing the dose. Take it at least 30 minutes before sleeping so

that it has a chance to dissolve, but don't take it with magnesium or

grapefruit. In general, don't take minerals within 2 hours of any MP

antibiotic. If generic minocycline upsets your stomach, switch to

brand-name pelletized Minocin. Compounding pharmacies such as Dollar

Drug in Santa at 800-728-3173 can make 25mg capsules out of 50mg

capsules. If even the smallest doses are intolerable, it's OK to

increase the time between doses to as much as a week. It usually takes

3 to 6 months to tolerate the 100mg dose. Don't stay on minocycline

alone for more than 6 months without contacting Dr. Marshall. Dr.

Marshall is able to recommend alternative antibiotics for any that are

intolerable for reasons other than herxheimer. For example,

demeclocycline is approved as a substitute for minocycline (provided

there is no suicidal ideation), and it's also made by Ranbaxy. Be sure

not to take expired minocycline, which can be harmful.

Once you are able to tolerate 100mg of minocycline every other day

for at least 4 weeks, it's time to add Zithromax to the protocol.

However, you should decrease the minocycline dose to 25mg at the start

of this new phase; build back up to 100mg as tolerated. Zithromax only

needs to be taken once per week. Start with 1/8 of a 250mg tablet,

then work up to a full tablet. Expect the herx to be worse the 3rd or

4th day after each dose. If the herx is too intense, it's OK to

lengthen the time between doses to 10 to 14 days. It usually takes 1

year to tolerate a full tablet of Zithromax. If you herx too hard on

the Zithromax, a temporary switch to clindamycin is allowed on the MP.

Patients who have significant cardiopulmonary symptoms should consider

modifying this phase in consultation with Dr. Marshall or his associates.

Once you tolerate 250mg per week of Zithromax, add

sulfamethoxazole/trimethaprim (Bactrim or Septra), pulsed at the same

interval as the minocycline. Again, reduce the minocycline dose to

25mg when starting this new phase. Kidney and liver function should be

monitored during this phase.

When all herxing has faded away (usually after 1 to 3 years), you can

use the 3-antibiotic cocktail intermittently, say for a week every

month or so, to keep everything OK. Benicar is then taken as needed.

Weight gain is a common side effect of the MP.

Dr. Moskowitz at dwmoskowitz@... is also testing

angiotensin receptor blockers in CFS.

Read about chlamydia pneumonia infection at cpnhelp.org. Dr.

Stratton's antibiotic protocol has been known to treat this successfully.

Neuropsychological disorders

Dr. Myra Preston's neuropsychological testing website is

www.siberimaging.com. Her methods can also be helpful for treating

cognitive problems and for documenting cognitive disorders for

disability insurance purposes. Her phone number is 704-543-0427. The

Dallas/Ft.Worth support group, whose website (virtualhometown) is

listed above, sells a video of Dr. Preston's cognitive dysfunction

presentation.

Disseminated Intravascular Coagulation (DIC) [a.k.a. Immune System

Activation of Coagulation (ISAC), or Antiphospholipid Antibody

Syndrome, or Syndrome]

For those interested in the Hemex (800-999-2568) heparin protocol for

sticky blood, good websites are www.hemex.com/cfs, hughes-syndrome.org

and www./llist/atsg. A sed rate less than 5 appears to

be a strong predictor of the condition, although a normal or high sed

rate does not rule it out. Another predictor would be a positive

response (more than pain relief) to 4 baby aspirin per meal for 4 days.

For the Hemex sticky blood test, plasma is required, not whole blood.

Take no IVs within 1 week before having blood drawn. The kit does not

contain all tubes necessary for the draw only those that doctors are

unlikely to already have. The package sent to the patient actually

gives better information than the kit sent to your doctor. The blood

needs to be shipped with 3 lbs. of dry ice, which is available at some

supermarkets. The test costs about $420 and is frequently covered by

insurance.

The treatment of choice for treating DIC is the prescription drug

Lovenox. Emisphere at emisphere.com is testing an oral form of heparin

that may be useful for treating DIC. The oral heparin spray from

University Compounding Pharmacy in San Diego at 800-985-8065 is a

similar option for those who don't want to do injections, and they

also have a nasal spray (1,000 units per puff per nostril) which costs

about $43 per month. Apothecaryshop.com, 877-276-8353 can also

compound an oral form of heparin. Heparin treatment has the added

benefit of relieving dysmenorrhea for some women.

Those who are allergic to heparin may want to consider Argatroban.

Abbott Labs makes a preservative-free injectable heparin for those who

are sensitive to preservatives. McGuff Compounding Pharmacy at

800-854-7220 may have a good price on heparin injections.

If coumadin (warfarin) is prescribed for anticoagulation therapy,

avoid any herbal products that might interact dangerously. Good sites

for checking drug and supplement interactions are

healthwell.com/index.cfm?;

http://www.medscape.com/druginfo/druginterchecker?src=google; and

drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html.

Dr. Cheney is using inositol hexaphosphate (IP6) at standard labeled

dosages to treat hypercoagulation. He also recommends turmeric at 100

mg per day between meals, and bromelain at 5000 MCU taken twice per

day between meals. Bromelain is indicated for high fibrin; turmeric

for fibrinogen. High prothrombin requires a prescription medication.

NOW brand (nowfoods.com) Boswellin also has curcumin and turmeric,

which may be beneficial in other ways. 72mg per day of turmeric

extract (not just dried root) can be helpful for IBS.

A good article on hypercoagulation is at

medscape.com/viewarticle/415086_1. Registration is free at Medscape.

After the course of heparin is finished, lumbrokinase can be a good

maintenance therapy. Buy it at mboless.com (888-511-8011) or have your

doctor order it from canadaRNA.com (866-287-4986). Nutricology.com has

lumbrokinase as well as high potency nattokinase (called Nattozyme),

which is another good fibrinolytic.

Chiari malformation

Experienced Chiari surgeons are as follows:

J. Rosner, Park Ridge Hospital, Fletcher, NC (contacts:

828-693-3015, 724 5th Avenue West, vile, NC 28739);

Dan S. Heffez, (contact: www.heffezneurosurgical.com, 773-610-6575 or

414-438-6500);

Jon D. Weingart, s Hopkins Hospital (contact: 410-614-3052, 720

Rutland Ave, Baltimore, MD 21205)

A referral to the above surgeons can be obtained from Dr. Sam Banner

in Dothan, AL, at the ael Medical Center. Dr. Weingart will

evaluate MRIs for free. Key symptoms that distinguish Chiari from CFS

are lack of gag reflex and worsening when leaning the head backward or

coughing. Good websites for Chiari information are www.ndrf.org,

www.pressenter.com/~chip/chiari.htm, and www.pressenter.com/~wacma. A

video of Dr. Rosner discussing Chiari surgery is available from Pam

Haisty at phaisty@....

There is a group in New York that also does excellent Chiari surgery.

Read about them at chiariinstitute.com, or call 516-570-4400. One of

the institute's doctors has a paper you can read at

www3.sympatico.ca/ejfs/chiari0.html.

If you are going to have surgery under general anesthesia for any

purpose, contact the National CFIDS Foundation at ncf-net.org to

obtain their anesthesia protocol.

Parasitic infection

The Institute of Parasitic Disease in Phoenix, AZ is reliable for

parasite testing. Call 602-955-4211. Also try the Parasitology Center

at parasitetesting.com. Other labs that can do parasite testing

include Great Plains, Great Smokies and Diagnos-Techs at diagnostechs.com.

Hidden lungworm, also known as cryptostrongylus pulmoni, has been

found in many CFS patients. Read more about it at

http://members.tripod.com/lak123

Multiple environmental sensitivities

A 2-week trial of a rotation diet is a must for all PWCs to determine

whether food allergies are involved, because 40% of PWCs get good

results. www.parentsofallergicchildren.org has a 4-day plan.

Dr. Cheney believes that the best available lab test for food and

environmental sensitivities is the ALCAT test. Fortunately, it is

available without a local doctor's order, although it will be

necessary to have blood drawn. Visit www.alcat.com for more info. The

test is covered by some insurance plans.

Test for mold exposure in your home with culture plates from Prestige

Publishing at 800-846-6687. Order 1 for about $30 for each room of

concern. Test results are sent to you in about 12 months.

Dental problems

The Clifford Compatibility Test is used to screen dental materials

for biocompatibility. Their website is ccrlab.com.

Tooth extractions sometimes cause lingering jaw infections called

osteonecrotic cavitations. See www.holisticdentists.com, altcorp.com

and www.maxillofacialcenter.com for more information, or read the book

" The Roots of Disease " by Kulacz.

in Bullard, TX outside Tyler is recommended by Cheney

to do cavitation surgery. He sends biopsies to a lab, where the

bacteria are classified in one of three different categories, 2 of

which are usually covered by medical insurance. Dr. is at P.O.

Box 970, 214 W. Main Street, Bullard, TX 75757, 903-894-7157,

jawrestoration1@.... Cheney also recommends Dr. McMahon of the

Oral Surgery Group, P.C. in Valparaiso, IN at 219-462-5117.

Dr. Cheney recommends rebreathing for a month prior to cavitation

surgery.

Dr. Klinghardt recommends that Dr. Hussar do cavitation surgery.

Mitochondrial myopathy

Mitochondrial dysfunction websites include mitoresearch.org,

nih.gov/sigs/mito, mdausa.org and mitosoc.org. The United

Mitochondrial Disease Foundation at umdf.org, 412-793-8977 can

recommend doctors who test for mitochondrial myopathy. Surf

www.iwindow.com/mito for additional info. The dose of CoQ10 may need

to be as high as 1200 mg per day to be effective for patients with

mitochondrial myopathy.

Sleep disorders

www.aasmnet.org has lists of accredited sleep study centers in

various states. If a study shows you need a CPAP machine to prevent

apnea, you can surf to www.cpapman.com for the equipment.

Methemoglobinemia

Info can be found at www.seaquake.com/licorice/methb.html or

www.seaquake.com/no/index.html.

Hypothyroidism

's Syndrome is an unusual thyroid disorder characterized by

subnormal body temperature that can cause many CFS and Fibromyalgia

symptoms. See wilsonssyndrome.com or call the 's Syndrome

Foundation at 800-621-7006 for more info. Also see brodabarnes.org.

Treatment may consist of trials of Synthroid, Armour thyroid or

Cytomel. Results are immediate! Cytomel is available at

pharm-international.com. Natural thyroid is available without a

prescription from biogenesis.co.za/pi-thyroid.asp, or from

antiaging-systems.com.

R. Blanchard, MD, who practices in Newton-Wellesly, MA wrote

a book titled, " What Your Doctor May Not Tell You About

Hypothyroidism: A Simple Plan for Extraordinary Results. "

Hormone Imbalances

There is some helpful info at johnleemd.com regarding both female and

male hormone imbalances.

Organochlorine pesticides

If symptoms of CFS began with exposure to organochlorine pesticides,

take 1g of choline and 500mg of vitamin C 3 times per day for 10 months.

Oxidative molecular injury

Dr. Majid Ali has some theory and treatment info at majidali.com. He

uses the Organic Acid Test from Great Plains Lab at

greatplainslaboratory.com. The test costs $250 if billed to insurance

or $200 if paid in advance. Great Plains is the only lab that Dr.

Cheney trusts to do organic acid analysis.

A bioflavonoid/antioxidant supplement Dr. Cheney recommends is

Proanthanol, made by Nutricology/Allergy Research Group. It's

available from NEEDS, nutricology.com, or other supplement sellers. 2

capsules per day is the usual dose. Another similar recommended

supplement is Vitanox.

Autoimmune disorders

The Mayo Clinic has developed a ganglionic acetylcholine antibody

test which may be diagnostic for patients with severe dysautonomia, as

evidenced by symptoms such as dizziness, fainting, vomiting or

inability to sweat.

Neurotoxins

Dr. Cheney feels that the information presented by Dr. Ritchie

Shoemaker at chronicneurotoxins.com can be helpful. His address is 500

Market Street, Suites 102, 103, Pocomoke, MD 21851. Phone

410-957-1550, fax 410-957-3930. (The Holiday Inn Express in Pocomoke

will give a discount to patients of Dr. Shoemaker if you ask.) If the

vision test indicates that you have neurotoxins, the suggested

treatment is Questran, which is generically called cholestyramine or

CSM. The generic is available at usmedication.com. If you have no

prescription plan and your household income is low enough, you can get

the drug free from Bristol Myers. Take Questran at least 2 hours

before and 2 hours after meals. It may take 6 months to see improvements.

Another way of dosing CSM is to take one scoop in 8 oz. water,

preceded and followed by 8 oz. of water, exactly 30 minutes before a

meal containing some fat and protein. Do this 4x a day, at least 3

hours apart. If constipation develops, take « to 1 scoop of Fibersmart

from Renewlife.com with the CSM. Continue for up to 12 weeks. If

hallucinations develop, take 45mg Actos (pioglitazone) and go on an

amylose-free diet. If you are diabetic and have an intolerable

herxheimer reaction to CSM, stop and take Actos for a few days, then

resume CSM.

If you want the sugar- and aspartame-free variety of CSM, you can buy

it (500g for $100) from 's Pharmacy in Bellevue, WA at

425-881-0222. Or try Denis Katz at Hopkinton Drug in MA at

800-439-4441. Add some stevia to make it palatable.

Dr. Shoemaker also does a few other unusual tests through Esoterix

Labs at esoterix.com, 800-661-4118. His panel includes MSH, HLA DR,

C3a and C4A from National Jewish Hospital. His latest book is called

" Mold Warriors. " Schaller MD, who also specializes in mold, lyme

and other neurotoxin-mediated illnesses, may answer email at

jschaller@.... His new book is titled " The Diagnosis and

Treatment of Babesia. "

Dr. Klinghardt uses Pharmax beta sitosterol to bind toxins. It can be

bought from Medicine Man at 800-538-8274.

Depression

Take 300mg of St. 's wort 3 times a day, with food. Continue for

2 months to receive its full effect.

Essential fatty acids can also be helpful for depression. Research

has indicated that high EPA fish oil called EyeQ, available at

equazen.com, is helpful for many PWCs. Nordic Naturals Eskimo-3 fish

oil is available in a pleasant-tasting liquid. Professor Basant Puri

has written about the importance of essential fatty acids in his book

" Chronic Fatigue Syndrome: A Natural Way to Treat M.E. "

The French antidepressant tianeptine, available from smart-drugs.com,

is effective for some PWCs with fewer side effects than other

antidepressants.

FIBROMYALGIA

Interferon

Dr. Cheney's oral interferon-à protocol: 25 units a day for one week,

then 50 units a day if no response. The concentration of the solution

is 3 units per cc of water base. Can be split into divided doses and

gargled before swallowing. Continue working up as tolerated if

benefits are not apparent. Most patients do best on 45-90 units 2x

daily, but some need as much as 1250 units total per day divided in as

many as 5 doses. Catchings Pharmacy at 800-356-1620 in Amarillo, TX

makes a good quality product; the pharmacist there is . Or

try Amarillo Biosciences at amarbio.com.

Dr. Krish at East Tennessee State University in City has also

been known to prescribe interferon, but he may no longer be there.

Jennie Floyd at 650-345-8317, jfloyd123@..., can tell you how

to get interferon lozenges from Canada. She took 6 per day for 6

months and received remarkable energy and stamina improvement. But the

treatment is harmful for some PWCs.

Dr. Chia also uses interferon to treat CFS, which he believes is

caused by enteroviruses or echoviruses, of which there are 26

different types. He is at 23560 Crenshaw Blvd., #101, Torrance, CA

90505, 310-784-5880.

Noni

Matrix Health makes a good brand of Noni, available from the Vitamin

Shoppe at www.vitaminshoppe.com, 800-223-1216.

Malic acid/magnesium

If you want to try any of the various brands of magnesium plus malic

acid, be sure to allow 8-10 months to see the benefits. The particular

brand Dr. Teitelbaum recommends is called Fibro-Care, available at

800-801-1406.

If you don't have much pain, but do have muscle twitching and spasms,

the best form of magnesium is probably the glycinate form.

Labs makes a magnesium glycinate/taurine (see warning in

hydroxycobalamin section) capsulated product called Magnesium

Glycinate Forte which is taken at 300 to 400mg/day. Vitacost.com has

magnesium taurinate. Magnesium Complex from NEEDS as given below and

Magnesium Plus from immunesupport.com are other sources of magnesium

glycinate. The Vitamin Shoppe's Vital Life Magnesium Complex may be a

cheap source, or check Beyond A Century as listed below in the

Adaptogen section. Adding 1 gram of magnesium oxide per day may also

help but can aggravate diarrhea (or benefit constipation, depending on

how you look at it!).

To treat migraine headaches, Dr. Cheney recommends daily IM

injections at bedtime of « cc magnesium (sulfate or chloride) plus 1«

cc taurine. Allow the magnesium vial to get warm before injecting, and

take 30 seconds to inject slowly. The taurine concentration is

50mg/ml. Like lidocaine, taurine makes magnesium injections almost

painless. A topical magnesium cream is made by kirkmanlabs.com, which

offers trial sizes of many of their products.

Most tests of magnesium status for PWCs are worthless. The only test

worth doing is the one done by Intracellular Diagnostics at exatest.com.

2 to 3 cups of Epsom salt per bathtub is sometimes helpful.

Guaifenesin

Dr. St. Amand's protocol is at www.guaidoc.com. (He also has a

hypoglycemia protocol you can read about at

thefibromyalgiatreatmentcenter.com.) The OTC treatment is

contraindicated for those with ulcers. Buy guai at ProHealth or Hyrex

Pharmaceuticals at 800-238-5282. Lots more information is at

http://home.ozonline.com.au/tmarcon. Undenatured whey as described

below may be able to accelerate the treatment of FM with guaifenesin.

At fibrofix.com there is info about combining guaifenesin with other

medications. Dr. Goldstein has found that even a single dose of

guaifenesin can provide relief.

Relaxin

The hormone relaxin has been known to help some FM patients with

sleep. Visit www.samyue.com for more info. Order a month's supply of

relaxin for $89 at 800-456-4325.

Recup

alfredblasi.net/eng/experiencia/ingles.HTM describes the usefulness

of Recup, a mineral blend. Or look at recuperat-ion.com. Dr. Enlander

is also having Clyde Chemists compound a Recup equivalent called

Lectrolyte. It costs $7 per bottle which lasts a week at a dosage of 2

teaspoons twice a day.

Mirapex

The drug Mirapex has actually cured some FM patients.

Peacefulmountain.com has a good pain-relieving gel.

DETOXIFICATION

Hydroxycobalamin (British B12)

References to studies on hydroxycobalamin can be found at

www.aacfs.org. Daily, 10mg (not microgram!) doses have been found

helpful for many PWCs. Oral hydroxycobalamin is available from

www.smartbasics.com, 800-878-6520; BioCare; and from

www.intensivenutrition.com, 800-333-7414. Solgar and Perque by

Seraphim Inc. are two such brands. Pharmacies that carry injectable

hydroxycobalamin include College Pharmacy in Colorado at

collegepharmacy.com or 800-888-9358, Women's International Pharmacy at

womensinternational.com or 800-699-8143X152, and Wellness Pharmacy in

Birmingham at 800-227-2627. A month's supply can cost as much as $80

($48 at Wellness), and it should be refrigerated after you receive it.

A cheaper but high quality injectable source is McGuff Pharmacy in

Santa Ana, CA, where a 30mL vial is $36 including shipping, with or

without preservatives, depending on doctor's orders. Preservatives

will be included if no direction is given otherwise, but note that

certain preservatives can cause the injection to sting. To eliminate

stinging, ask that saline be added to the solution and that the pH be

adjusted. A 10mL vial is $21 including shipping, and individual-dose

unpreserved 1mL vials are $10 each plus $7 shipping. You can email

their pharmacist at wiliamblair@.... Fax your prescription to

McGuff at 877-444-1155, or phone 877-444-1133. Include your charge

card number, phone number and mailing address when you call or fax the

prescription. College Pharmacy may be willing to match McGuff's

prices, and they will file insurance claims for you, whereas McGuff's

won't.

Whatever form of hydroxycobalamin you buy, be sure it is not

manufactured by Amram, Inc. of Rathdrum, Idaho, nor sold by Phyne

Pharmaceuticals of sdale, Arizona. Such products may be

contaminated, as may be their taurine and procaine.

Regardless of the source of injections, ask about syringes and « "

long, 29 gauge needles to go with the B12 solution. Coated, 1/4 " long

insulin needles also work well. These generally don't require a

prescription, but if you want insurance coverage for them, ask for a

prescription. Usually, you insert the needle into your abdomen at

least 2 " away from your navel. Experiment to see whether morning or

bedtime injections work better. Always take multiple B vitamins when

doing a trial of any form of high-dose B12.

ATP/glutathione

Dr. Salvato in Houston, TX at 713-961-7100 is known for her

advocacy of ATP/glutathione injections. If your doctor faxes a request

for info on letterhead to Dr. Salvato, she will respond. Injections

are typically composed of 100mg glutathione and 1mg ATP in 1 ml of

solution, with .5ml of lidocaine or procaine (see warning in

hydroxycobalamin section) to kill the sting. Wellness in Birmingham at

wellnesshealth.com, 800-227-2627 also has IV glutathione. Medaus

should also have it.

Glutathione (GSH)

Glutathione is thought to be the most important detoxifier in the

body. It forms the basis for Rich Van K's treatment program described

at cfsresearch.org/cfs/research/treatment/28nf.htm.The only effective

way to take it orally is to take it in liposomal form. Such a form is

available from wellnesshealth.com, 800-227-2627 (called lipoceutical).

600mg 2x a day is appropriate and effective for killing HHV-6a.

Wellness also produces glutathione nasal spray and a version for

nebulizers, but they both require a prescription. Read about the

Essential GSH brand at essentialgsh.com. Other brands are at

gshnow.com, healthsecretsusa.com (also contains methycobalamin and

folinic acid) and lipoflow.com. NEEDS carries at least one brand of

liposomal GSH. Liposomal forms of GSH are soy-based, so avoid them if

you are allergic to soy. Rich Van K also thinks there is a metabolic

connection between CFS and autism, particularly where glutathione is

concerned. He suggests reading the book " Autism: Effective Biomedical

Treatments " by Pangborn and Baker, available at

autismresearchinstitute.com. And he suggests getting the genetic

testing panel at testing4health.com, which does not require a doctor's

prescription.

Glutathione pushes for the Kane//Speight protocol start at

500mg and increase to 2.5g. Mix with 4 to 15cc of sterile water and

infuse over 3 to 5 minutes, once or twice weekly for 3 to 6 months.

McGuff's Pharmacy will compound glutathione for IM injection. Cheap

GSH fast pushes are available from Infuserve America at

infuserveamerica.com.

250mg sublingual orange or blueberry troches of glutathione are

available from Lionville Pharmacy at 877-363-7474.

Hopewell Pharmacy at 800-792-6670 will compound glutathione

suppositories, as will wellnesshealth.com.

Glutathione transdermal cream is available from kirkmanlabs.com.

The spice turmeric, which contains curcumin, will stimulate

glutathione production. Protandim, which contains silymarin,

turmeric/curcumin, green tea extract, ashwaganda and bacopa, may be

worth a try.

Whey

Nondenatured and undenatured whey contain the necessary ingredients

for the body to manufacture glutathione. Nondenatured is better for

this purpose. ImmunoPro, also called ImmunePro (from Houston Buyer's

Club at www.houstonbuyersclub.com, www.growvital.com,

www.immunesupport.com, or NEEDS as given below), may be the cheapest

and most powerful nondenatured whey available. There is a risk that it

will lower estrogen levels, however. Start at 1/4 teaspoon mixed with

water on an empty stomach first thing in the morning. Do not use a

blender to mix it; an $8 mixer from www.VitaminWorld.com is

acceptable. As tolerated, work up to at least 10g twice daily if

benefits are not apparent, and continue for at least 3 months. Almost

no one needs more than 20g per day.

NEEDS prices on ImmunoPro: 1 jar for $40, 6 jars for $36 each, 12

jars for $32 each. See www.immunepro.com for additional info.

Alternatives to ImmunoPro include ImmunoPro Rx, " The True Whey "

(nondenatured, made by Source Naturals, available from vitacost.com or

vitanetonline.com), Immunocal (undenatured), ImmuPlus, RenewPro

(nondenatured) and product 379, enhanced life extension protein, from

www.lef.org. Before ordering, check smartbodyz.com, 1-87SMARTBOD, to

see if they are having a « price sale on 379. You can also order Life

Extension Foundation products at lifeextensionvitamins.com if you are

not a member. For Immunocal, compare the price at nutritionadvisor.com

and http://members.shaw.ca/widewest/HMS-90.html to the $80/2 boxes

($60 for 1 box) from the Numed-Tech Buyers Club. To order from NTBC,

contact pharmacist Charley Green at 209-948-3174 or fax 209-465-1398.

Among the above varieties of whey, Dr. Cheney currently has the most

confidence in Immunocal, but RenewPro tastes better and mixes easier

while remaining very potent.

Http://store.myhealth-store.com/re30gmpw.html has a good price for

RenewPro 30g powder for $24. Dr. Enlander claims that Immunoprop, not

to be confused with ImmunoPro, is the most powerful whey. It's

available from Clyde Chemists on Madison Avenue in NYC.

Mercury exposure

A good book on mercury problems is Cutler's " Amalgam Illness:

Diagnosis and Treatment. " Read more about it at noamalgam.com. His

treatment protocol involves the simultaneous administration of lipoic

acid and DMSA or DMPS. The prescription form of DMSA is called Chemet,

but it is available without a prescription from vrp.com

(800-877-2447), NEEDS, or lef.org (800-544-4440). The nonprescription

form is sometimes called Captomer. DMPS is much harder to find but has

fewer side effects than DMSA. The Falls Pharmacy at

thefallspharmacy.com is one of several places that can fill DMPS

prescriptions; another is Apothecary Labs at 800-869-9160. More good

info can be found at http://home.earthlink.net/~moriam. Read about

transdermal DMPS at tddmps.com. 2g of glutathione can be added to

twice monthly infusions of EDTA or DMPS for chelation.

Boyd Haley, a chemist who studies mercury at the University of

Kentucky, can be reached at behaley@....

Dr. Cheney's mercury detox program is as follows:

1. Begin ImmunoPro or Imuplus at the above dosage 3 months before

amalgam removal, and continue afterwards.

2. Take 1 or 2 capsules per day of chinese garlic one week before

removal through 30 days after. NEEDS at 800-634-1380, www.needs4u.com,

carries the Labs enteric-coated tablets.

3. After amalgams have been removed, take Metal-Free

(metal-free.com). Buy it at longevityplus.com.net/Metal-Free.html or

call 800-580-7587. It costs $170 for 30ml. Work up as follows: For the

first 3 days, take 1 spray sublingually on an empty stomach and hold

in mouth for 3 minutes. For the next 3 days, take 4 sprays per day.

For the next 3 days, take 8 sprays per day. Reduce the dose as

tolerated. Take 4-5 days per week, then rest and resume.

4. Take 2 to 5g per day of vitamin C in divided doses.

5. Take multivitamins, CoQ10 (up to 200mg/day, sublingual is best),

lipoic acid (200mg/day) and vitamin E (400IU/day). The multivitamin

Cheney recommends is Nutrient 950 without copper or iron, made by Pure

Encapsulations.

More mercury detoxification protocols can be found at mercola.com and

cfspages.com. To find a mercury-free dentist to remove amalgams under

the proper protocol, surf cfsn.com/metlist.html or amalgam.org. Don't

take more than 300mg per day of n-acetyl-cyteine (NAC) if you have a

significant amount of mercury in your body. 300mg tablets or capsules

of NAC are impossible to find, so buy the Source Naturals 600mg

tablets and split them, or get 300mg mixed with other glutathione

precursors at cfsn.com. In combination with L-glutamine and L-glycine,

NAC can be used to build glutathione levels much like undenatured

whey. Up to 15 tablets a day of German chlorella (available from

e-lyte.com) is safe to take for mercury detox. Nanocolloidal detox

factors (NDF) is available from healthydetox.org or healingedge.net.

UltraClear

Once a course of ImmunoPro (or Imuplus for the lactose intolerant) is

completed, some PWCs may want to continue their detoxification program

with a course of Ultra Clear or Ultra Clear Plus. To decide which of

the two formulas is appropriate, have a physician order the Great

Smokies Diagnostic Lab test for balanced detoxification. Phase II

detoxification must be normal if you want to take the original

formula. If you are found to be an imbalanced detoxifier, take the

Ultra Clear Plus instead. If you want to go on a fast, it's safer to

use UltraClear Sustain.

Drz.org sells all Thorne products, including MediClear, which is

similar to UltraClear.

A good detoxification program that uses UltraClear is described in

the book, " 7-Day Detox Miracle " by and Barrie,

both doctors of naturopathy. Dr. Barrie is the founder of the Great

Smokies Diagnostic Lab.

Cilantro

Fresh cilantro, also called coriander, is as powerful as EDTA at

chelating heavy metals. Take 400mg per day.

Idebenone

Dr. Cheney suggests 45mg of idebenone twice a day with food. You can

buy it at kirkmanlabs.com or

http://smart-nutrition.net/info-idebenone.htm. Reduce the dose if the

herx/detox is too intense. With the idebenone, he also says to take

1-2 teaspoons twice a day of Labs' C-plex powder, available at

myvitanet.com/cplexpow846o.html.

Red clover and burdock helps lymph drainage.

MITOCHONDRIAL SUPPORT

Take up to 3g a day of L-carnitine in divided doses. Since it is

synergistic with CoQ10 and B vitamins, include these in the diet with

meals. Carnitine is best taken first thing in the morning on an empty

stomach.

The patches described at lifewave.com are designed to help

mitochondria to burn fats more efficiently. They've been shown to help

women more than men.

Dr. Stacpoole at the University of Florida is doing research on

a drug called dichloroacetate (DCA) which may block the buildup of

lactic acid in mitochondria.

CONCENTRATION

Take the Traditional Chinese Medicine formula Liu Wei Di Huang Wan,

which is made by

Gansu Medicines & Health Products

Import & Export Corporation

360, Jia Yu Guan West Road, Lanzhou China

INSOMNIA

Traditional Chinese Medicine

Take the TCM formula Shen Ching Shuai Jao Wan, which is made by

Beijing Tung Jen Tang.

Western herbs and supplements

The valerian with lemon balm sold by the CFIDS & Fibromyalgia Health

Resource (800-366-6056, www.immunesupport.com) is surprisingly

effective for some people. The Seriphos sold at chronicfatigue.org may

be helpful for patients whose cortisol production is too high at night

to sleep. Take 1 to 9 capsules in the afternoon to avoid being groggy

in the morning.

NEURALLY MEDIATED HYPOTENSION (NMH)

Oxytocin troches, available through compounding pharmacies, are a

safer treatment for NMH than Florinef. When oxytocin is injected, it

may also be helpful for fibromyalgia. Read more at fibromyhelp.com. If

Florinef doesn't work, then try proamatine.

Licorice from the supplement sources given below is most commonly

recommended for NMH, but is contraindicated for patients with lupus.

180mg per week of glycyrrhizic acid, the active ingredient in

licorice, is safe for most people. Read about sources and precautions

at www.primenet.com/~camilla/herbs.htm or

deafwhale.com/treating-chronic-fatigue-syndrome-with-licorice/index.html.

For adrenal support, some PWCs find adrenal cortical extract (ACE)

helpful. Sublingual ACE is manufactured by Biomax, Ltd. at

800-819-5631, biomaxformulations.com. Buy it from Gaines Nutrition at

gaines.com, 800-830-7139. It's also available from NEEDS as Subadrene,

made by American Biologics. For more information, email Dean at

avenger@..., or visit

http://homepages.paradise.net.nz/~avenger/cfs/cfs.htm.

A combination of licorice and adrenal extract called Cortrex,

available from NEEDS, is made by Thorne Products. Take 6 capsules per

day. Another good product is Adrenogen (Item #M803) from Metagenics

(Nutrition Dynamics) at 800-444-9988. 2 tablets 4 times a day is helpful.

" Safe Uses of Cortisol " by Dr. Jeffries is a good guide to use when

tinkering with adrenal hormones. If you want to use hydrocortisone to

help your adrenals, take less than 20mg per day. More info at

deafwhale.com/cfs/hydrocortisone.html. Decreasing doses (10mg, 5mg,

2mg, 1mg) with meals are good. Expect improvement to occur within 2

weeks. Prednisone is longer acting than cortisone, but take less than

5mg per day.

The prescription drug midodrine can also be helpful for NMH.

IMMUNE SYSTEM MODULATION

Transfer factor

TF websites include dynamune.com, transferfactor.com/tfplus.html,

animune.com and transferfacts.com. The guru of transfer factor is Hugh

Fudenberg in Spartanburg, SC. Dr. Fudenberg's office number is

864-591-0944. His websites are http://members.aol.com/nitrf and

nitfr.org. Dr. ph Brewer in Kansas City is another big TF

proponent; his website is plazamedicine.com. Other TF products include

ImmunFactor2 at chisolmbio.com and Formula 560 from Immunity Today

(immunitytoday.com), which is recommended by Dr. Cheney. Shapefast.com

has a good price on 4Life transfer factor.

NK cell boosters

To assess your NK cell function, get a baseline NK test from Ann

Fletcher at the University of Miami, Department of Medicine-R41, RSMB

Room 8168, 1600 NW 10th Avenue, Miami, FL 33136. The test is called

" Natural Killer Cell Function Assay " , costs $350, and requires one

small EDTA purple tube and one medium heparin green top tube of blood

drawn in the afternoon and shipped immediately overnight (no ice) with

A.M. delivery. Call 305-243-6288 to be sure the lab is ready for your

specimen. Specialty Labs at 800-421-7110 is the lab Dr. Cheney now

uses for this test.

If the test reveals low number or function, several substances can be

tried. Visit www.keephope.net for several suggestions including IP6 in

a particular ratio with inositol; Beta1,3 glucan; DNCB; Naltrexone;

and MGN3. www.lowdosenaltroxone.org has more info about naltrexone;

3mg at bedtime is a typical dose, but do not take the slow-release

form. (Low dose ~.5mg naltrexone has also proven effective for

Irritable Bowel Syndrome.) The brand of beta 1,3/1,6 glucan Dr. Cheney

uses is Immutol at 800-446-3063 or www.immunocorp.com. Mention

Cheney's name and get a 20% discount. Take up to 2.5g per day.

Other helpful substances include Kutapressin (injectable, now called

Nexavir), Isoprinosine (described below), pine cone extract (10 drops

per day PineExtra, $60/oz, 800-226-1345 or pinextra.com, or

SunRaySupply.com, or Vitamune at 800-226-1345, or LifeStyle Management

at 800-238-9861), heparin, and Formula 560 transfer factor. ,

whose email address is clemsonjk@..., will sell Pinextra for $45

per bottle + $3 shipping. Prescriptionsbymail.com, 888-726-4496 has a

good price on Kutapressin. Nexavir is available from Nexco Pharma at

nexcopharma.com; it's also available as a transdermal gel. Nexavir

contains phenol, but hepapressin doesn't.

Thymic Protein A

Read more about Thymic Protein A at proboostmed.com.

A synthetic thymus injectable called Zadaxin is made by SciClone

Pharmaceuticals at sciclone.com.

Isoprinosine

Isoprinosine, also called Viruxan, is known to mimic thymic hormones,

and has been proven effective for some PWCs by Dr. Byron Hyde. Dr.

Hyde's phone number is 613-722-5555, but he rarely answers it. It

prevents TNF-a upregulation (leading to joint pain) while on growth

hormone treatement. Read more at www.lef.org. It increases uric acid,

so it should not be taken by patients who have gout. It also causes

weight gain. The substance can be ordered without a prescription from

offshore pharmacies via antiaging-europe.com,

life-extension-drugs.com, anti-aging-drugs.com,

www.libsol.net/enter.html or http://pharmacymex.com. However, it is

much cheaper (about 53› per pill) to buy it with a prescription from

Ireland's Newport Pharmaceuticals at newport-pharma.com. Fax the

prescription to them at (011)353-1890-3016. In that case, the

prescription should read as follows:

" On special request for personal import only

Isoprinosine/Imunovir

500 mg, 3 bottles of 100 each

Sig: 2 T.I.D.

ICD-9: 780.71

Dg: CFS "

Tape the prescription to a page with your name, SSN, address and phone

number. It should be accompanied by a cover letter that reads as follows:

" To whom it may concern:

Re: (patient's name and SSN)

(Patient's name) has been prescribed Isoprinosine to enhance natural

killer cell activity. Chronic Fatigue Syndrome is associated with

several immune abnormalities, such as decreased natural killer cell

mediated cytotoxicity and dysregulated production of cytokines.

The prescribed dosage for (patient's name) is 2, 500 mg tablets 3

times a day.

(Patient's name) is a patient of Dr. _ and has been since (month,

year). Please feel free to call if you have any further questions.

Sincerely, Dr. _. "

According to Dr. Hyde, the dose should actually be varied daily,

weekly and monthly over a 3 month (12 week) cycle according to the

following protocol: During weeks 1, 3, 5 and 7, take two, 500mg

tablets 5 days a week. During weeks 2, 4, 6 and 8, take six, 500mg

tablets 5 days a week. During weeks 9, 10, 11 and 12, take no

isoprinosine.

Dr. Cheney's dosing schedule is to take 6 tablets daily on weekdays,

2 tablets daily on weekends, and no tablets for 2 weeks for every 3

months of treatment. When patients can't tolerate that schedule, he

advises either 8 tablets daily on weekdays and 4 tablets daily on

weekends, or 6 tablets daily on Monday-Wednesday-Friday and none on

weekends. All patients take the 2 week break after taking 3 bottles

(300 tablets).

Another source of isoprinosine is Rivex Pharma in Toronto at

800-784-0975x242, helixbiopharma.com. Ask for Bill Chick, who will

discount the price to $90 for 3 bottles for PWCs without prescription

coverage and low income. Shipping adds $17. Fax your prescription to

them at 800-784-0976.

BRAIN OXYGENATION (COGNITION)

A good cognitive enhancement website is ceri.com.

Piracetam

Piracetam, also called Nootropil, is available from libsol.net,

smart-drugs.net, http://pharmacymex.com, and nubrain-store.com. See

www.folkarts.com/idef/pharmacies.htm, ww2.smart.net/~inhome, and

www.uta.fi/~samu/nootropics_resources.html for other sources of

cognitive enhancers. Piracetam works best when taken with choline.

Take 800mg doses, but none several hours before bedtime. It can be

consumed safely at up to 8000mg per day. An initial dose of 2400mg

followed by daily morning doses of 800mg is a good general regimen. It

may take several weeks to see effects. Taper off slowly, as is done

with Klonopin. A woman named Stania in the Czech Republic is willing

to sell Piracetam at a 30% discount from most American sources, and if

finances are limited she will even discount 60%. Email her at

smuzik@... or stanislava.muzikova@... for details. But if you

can tolerate powder, it's much cheaper to buy it at

beyond-a-century.com, 800-777-1324.

Hydergine

Generically called ergoloid mesylate, hydergine is another good brain

oxygenator available at nubrain-store.com. It is more powerful and

more expensive than Piracetam. A prescription variety is made by

Sandoz Pharmaceuticals. Use the sublingual form after a meal. Dosage

is 3 to 9mg per day in divided doses on an empty stomach. It may take

2 years to see the fullest benefits.

Lucidril

Lucidril is another cognitive enhancer synergistic with Piracetam and

Hydergine. Take 250mg, 2 or 3 times per day but not before bed.

DMAE

Dimethyl amino ethanol can be taken twice a day in 150-500mg doses.

OmniCholine from Cardiovascular Research, which contains choline,

inositol and DMAE, can be helpful at 6 capsules per day.

Gingko biloba

Dr. Earl Mindell's Memory Mate is a good quality source.

TISSUE OXYGENATION

Dr. Cheney recommends the book " Breathing Free " by Hale, on

which the following recommendations are based. A good audio tape or CD

on the same subject by Weil is titled " Breathing: The Master

Key to Self Healing. " Try Weil's methods before proceeding to the more

expensive and difficult treatment described below.

Oxygen deficiency due to blood alkalosis can be treated with a

" rebreather mask " and oxygen tank as described below. If you can't

find a doctor to order the equipment or insurance to pay for it, buy

aviator's oxygen but avoid welder's oxygen.

1. To determine whether the rebreather mask will likely work for you,

either your blood pH will measure over 7.4, or your urine pH will be

under 6.0, or your urinary citrate level will be abnormally high, or

your 2-oxo-glutaric level will be low.

2. The masks are hard to find. One source is Rhema-Irving in Irving,

TX at 972-445-0007, also known as Rotech Oxygen and Medical Equipment.

The masks are actually manufactured by Allegiance Healthcare

Corporation in McGraw Park, IL 60085, catalog #001203.You will be more

likely to get insurance reimbursement if your doctor prescribes the

mask to treat headaches. If you have MCS and therefore need special

equipment, try http://livingsource.com.

3. The mask should be set to 35-40% FIO2, which requires that the O2

tank be set to deliver 10 liters per minute. Keep the mask tight to

your face. Adjust the flow rate on the tank so that the bag contracts

2/3 during inhale and is fully expanded during exhale. The little

holes near the nose may need to be taped over. If you or a local

respiratory therapist have questions about setting up the equipment,

call Tony Winkler, CRT at the Rhema number given above, X264.

4. Breathe normally, and lie down if there is any dizziness.

Dizziness might be reduced by drinking Gookinaid ERG, which is

available at http://members.aol.com/Gookinaid, gookinaid.com or

800-283-6505.

5. Use the mask for no more than one hour at a time, but try to do an

hour a day. Break that hour into as many as 3 sessions per day if

desired.

Dr. Cheney no longer believes that a rebreather mask is helpful.

Instead, just cup your hands over your nose and mouth as you breathe

oxygen from a nasal canula. Do 1 minute of rebreathing for every 2 or

3 minutes of oxygen flow. Do 2, 20 minute sessions per day. Use a

demand regulator on the tank if possible. Set the regulator at 2 to 3

liters per minute.

Hyperbaric Oxygen Therapy has been helpful for many PWCs. Read more

at www.o2med.com. A one hour session every day should be sufficient.

If you want to get your 2,3-DPG level tested, try BC Biomedical

Laboratories at 800-565-1441.

For people whose CFS or related condition began with exposure to

carbon monoxide, the website www.mcsrr.org has info about a treatment

protocol.

INFECTIONS

Olive leaf extract is a good " bug " killer, whether viral, bacterial

or fungal. The East Park brand is most potent (800-345-8367,

www.eastparkresearch.com or call NEEDS for a better price). But it can

lower blood pressure, so be careful and add licorice if necessary. Up

to 10 capsules per day is safe. Take at bedtime since the effect tends

to deepen sleep.

To disturb the envelope of HHV6, take 24g (3« tablespoons) per day of

coconut oil, which contains monolaurin, and acetyl-l-carnitine. The

coconut oil should be unrefined and unhydrogenated. A potent

monolaurin product called Lauricidin is available at lauricidin.com.

Tropical Traditions at tropicaltraditions.com makes a good-tasting

coconut oil that contains significant amounts of butyrate.

Sambucol (black elderberry extract) is effective against flu viruses.

iherb.com is a cheap source.

For overgrowth of bacteria, candida and parasites in the gut, Dr.

Cheney uses 3 oz. of water mixed with 15 drops of Uva Ursi extract, 15

drops of Pau D'Arco extract, and 15 drops of Wormwood/Black Walnut

extract, taken daily on an empty stomach. Take 1 month on, 1 month

off. All supplies are available at needs.com. A similar blend is

available at http://ia.com.

Dr. Cheney has some patients taking the very expensive ($305/bottle)

antiviral ozone supplement called Immune Essential CAOP from

canceroption.com. A similar product called Immune Prime from

nutricology.com (buy from Gaines Nutrition as given in the NMH

section) is an alternative also recommended by Cheney. The Immune

Prime is probably a better choice because they ship overnight on ice

to prevent loss of potency. When you receive it, immediately put it in

your freezer. It won't completely freeze, so you will still be able to

dose yourself quickly and easily. If you opt for the Immune Essential

CAOP, start with 1 drop per day, increase to 3 drops per day, then 3

drops twice per day. Most PWCs cannot tolerate more than 3 drops 3

times per day.

Colloidal silver is an alternative to antibiotics. Read about it at

silver-colloids.com. Utopiasilver.com sells a quality product.

A magnesium ozonate-based compound called Oxy-Powder is available at

ghchealth.com, 800-476-0016. Read about it at successfulhealing.com.

Professor Montoya of Stanford University has successfully

treated HHV-6 and Epstein-Barr with valgancyclovir. There is a die-off

of infected cells that occurs around week 3 or 4 of treatment, then

improvement starts.

COAGULATION

Take 2400 GDU up to 6000 GDU (10g) of bromelain per day in divided

doses. If you are allergic to bee stings, you have a 28% chance of

reacting similarly to bromelain, so have the necessary emergency

treatment available. If you are allergic to bromelain, serrapeptase is

a more expensive alternative. It is available from NEEDS or

vitaminshoppe.com as Emerson Ecologics' SerraFlazyme, or in a product

called Vitalzyme.

DIGESTION

For general info about digestive diseases, look at

gutdoc.org/Illnessess.htm.

Dr. Cheney's preferred digestive enzyme is called Oxyfresh, available

at oxyfreshww.com, 800-333-7374.

To treat indigestion and acid reflux (heartburn) due to

hypochlorhydria, Dr. Cheney recommends starting with 1 or 2 capsules

per meal of Labs' Betaine Plus, available from NEEDS as given

above. (Or try Duogest from heritagestore.com, 800-862-2923.) Increase

the dose until acid reflux disappears, but not enough to cause

diarrhea or other intestinal distress. Note that as the dose is

increased, heartburn may get worse before it gets better.

A simple way to test whether you have enough stomach acid is to put

1/4 teaspoon of baking soda in a cup of water, then drink it when you

first arise in the morning. Your first burp should occur after 2 to 3

minutes elapse. If you burp sooner you have excess acid; if longer,

you need to supplement with betaine HCl.

INTESTINAL HEALTH

Dr. Cheney cites Dr. Pimental as an expert in gut bacteria. His book

is titled, " A New IBS Solution. " The book discusses Xifaxan, which is

an antibiotic that can kill gut bacteria, but itself is not absorbed,

so it doesn't need to be detoxified.

For œ30-œ60, Sunderland University in the UK can test for an abnormal

urine metabolite called indolylacryloyl-glycine (IAG), commonly

associated with autism. Call 0191-510-8922. Great Smokies Diagnostic

Lab may also be able to test for it as part of their

malabsorption/dysbiosis urine profile.

To treat intestinal permeability (informally called leaky gut), Dr.

Cheney uses Perm A Vite by Allergy Research Group. It's a powder

composed mainly of L-glutamine but sweetened with stevia. It can be

ordered from www.lifesvigor.com or at a senior's discount from

800-782-4274. You can take as much glutamine as «g per kilo of body

weight per day in divided doses. 1 to 3 teaspoons daily is a

maintenance dose.

A more powerful glutamine supplement called Glutimmune is available

from wellwisdom.com.

Butyrate is another OTC supplement that helps rebuild intestinal

mucosa. It is one of the ingredients in JUVEN, a supplement clinically

proven to increase muscle mass. Order it from rosstore.com or call

877-GO-JUVEN.

Tyler at tyler-inc.com makes a product called Permeability Factors

(available at NEEDS) that can successfully treat leaky gut in 2

months. It contains glutamine as well as the more unusual

n-acetyl-glucosamine and gamma oryzanol.

A very potent acidophilus supplement is made by the Torrance Company

at 800-327-0722. But before you order it, ascertain via Mark Konlee

(mentioned above) that the strains in the product are appropriate for

your immune profile. The thermophilus strain is typically

inappropriate for PWCs. Other good probiotics are Primal Defense,

Flora Source and Culturelle, which is made by Klaire Laboratories at

800-859-8358. Nature's Biotics is just as good as Primal Defense for

supplying soil-based organisms. Custom Probiotics at

customprobiotics.com, 800-219-8405 manufactures a good blend called

CP-1 for $50, shipped refrigerated. Vitamin Research Products at

vrp.com has some good probiotics. Other proven probiotics are VSL #3

from vslpharma.com, Lactobacillus reuteri from Nature's Way, and Align

from Protor & Gamble. VSL #3 is used to treat Ulcerative Colitis and

is being studied for effectiveness on IBS.

For those who have trouble swallowing pills, the BB-sized capsules of

Bifa-15 from Eden Foods at eden-foods.com may be a good choice to

supply the probiotic bifidobacterium longum. These bacteria secrete

acetic acid (vinegar), which kills yeast.

Dr. Devin Houston at houstonni.com is a biochemist who has developed

enzymes that allow people with intestinal permeability to tolerate

gluten and casein. Kirkman labs is making a similar product called

Enzyme-Complete/DPP-IVII.

Earth Dragon Peptides may be helpful for certain intestinal problems.

It is available from NEEDS or Nutricology.com.

RESTLESS LEGS

The homeopathic remedy zincum metalicum in the 200C potency can be

effective for restless leg syndrome.

MULTIPURPOSE

Neurontin

Neurontin guru Dr. Jay Seastrunk has moved to San Diego.

Magnets

Nikken brand magnets at www.nikken.com have been helpful for some PWCs.

Bee Venom

To find a local apitherapist, surf www.saunalahti.fi/apither or The

American Apitherapy Society at www.apitherapy.org/aas. Dr. Theodore

Cherbuliez is president, and can be reached at 1209 Post Road,

Scarsdale, NY 10583, or (914) 723-0920, or tcherbuliez@....

Good prices on quality bee products are at glorybee.com, 800-456-7923

(Their pollen contains growth factors, but can cause shock in patients

who are allergic to bee stings). There is a free book on bee venom

available online at www.fao.org/docrep/w0076e/w0076e00.htm. Be sure to

use honeybees, not other varieties, for bee sting therapy.

Growth hormone

For women, menopausal symptoms coupled with high saliva and urine

estrogen levels are an indication that growth hormone injections

should be considered. The Insulin Tolerance Test or bicycle stress

test followed by growth hormone measurement are two other tests used

by Cheney to justify the injections medically and to insurance

companies. Some insurance companies such as Blue Cross insist on a

pituitary stimulation test, and some Blue Cross policies don't cover

the treatment at all. Since growth hormone will increase the growth of

any undetected cancer, routine cancer screening tests should be done

as well as the $135 Anti-Malignant Antibody Screen (AMAS), which is

covered by Medicare. Call 800-922-8378 for more info or to order a

test kit.

For many PWCs, the immune system must be brought into Th1/Th2 balance

(cellular immunity must be increased, humoral immunity decreased)

before growth hormone injections are started. Since NK cells are part

of cellular immunity, see the NK cell boosters given above. To verify

that the immune system is properly balanced, Dr. Cheney orders the CFS

Panel from mdlab.com (877-269-0090), the Genovations test or the

immune genetic panel from Great Smokies Diagnostic Lab, and the

Molecular Biology of CFIDS panel from immuno-sci-lab.com

(800-950-4686). Of particular importance are normal levels of

Interleukin-10 and Tumor Necrosis Factor alpha. Don't try growth

hormone if the Genovations test shows polymorphism for the gene

associated with IL-10, nor if you have active pathogens, nor if your

NK function and RnaseL levels are abnormal. Your immune system should

be in balance for 1 month before starting the protocol.

Dr. Cheney recommends that patients taking growth hormone enroll in

Pharmacia & Upjohn Company's " bridge " program. Call 800-645-1280 to

register and fill your prescription. Ask for the MiniQuick dose packs.

The company will call your insurance company to request coverage based

on exercise response data. Seven 0.2mg syringes cost $49.

Begin injections with a 0.2mg dose into the thigh or buttock once per

week. The needle is extremely small. If you feel more fatigued, cut

the dose in half. If you feel nothing, double the dose. Increase

injections to twice per week if improvement occurs. Evaluate

" improvement " over the course of a week, not within 24 hours of each

injection. Eat protein as tolerated. Whey, Seacure (discussed below)

and UltraClear Plus are good sources of milk, fish and rice protein,

respectively.

If you don't enroll in the " bridge " program, best prices can be found

at Medaus Pharmacy at 800-526-9183 (ask for ). Minor

savings can also be realized by buying through a Mexican source such

as geocities.com/Paris/5000/buying.html. See

growthhormonedeficiency.org for more info.

Dr. Cheney hopes that healing can be accelerated by the simultaneous

administration of five different fetal bovine growth factors

(mesenchyme, liver, thymus, adrenal, and central nervous system),

which are much more expensive at $1900 for a 5 month's supply. Read

more about them at biopathics.com. Growth factors are made by Natcell,

Resocyte, Cell Life and Regeneresen. Currently, Dr. Cheney only uses

the thymus, liver and mesenchyme factors. The growth factors are

available without a prescription from Women's International Pharmacy

(800-699-8143, ask for Greg Simons) in Sun City, AZ; from Alternative

Medical Solutions at 877-676-1615; or from Hepatitis Cfree.com,

877-676-1615. They can be injected or taken orally twice a week, the

day after taking the growth hormone. To lessen the risk of mad cow

disease, call Natcell at 877-NATCELL for your nearest distributor of

porcine growth factors. Natcell does not test for prions. Cell Life

brand is made from ovine and porcine sources and is screened for mad cow.

After a course of injections, response is measured with another

bicycle test or the Shungu MRS described below in the disability section.

biomedcomm.com (888-637-3516) sells homeopathic rhGH (recombinant

human growth hormone).

Acclydine

Acclydine is an expensive ($5 per capsule) non-prescription growth

hormone stimulator made by Optipharma in the Netherlands. The cost of

the full treatment program is $1343, but there may soon be a no-cost

program for patients who can't pay. To determine whether it might be

helpful for you, have your IGF-BP-3/IGF-1 ratio tested (available

through LabCorp or Quest). IGF-1 is also called somatomedine C. If the

ratio is greater than 4.5, you have the best chance of response, but a

ratio above 3.5 is acceptable (pay close attention to the units when

calculating the ratio). Take 1 capsule per 20kg body weight per day,

between meals in divided doses, along with amino acids, glutamine and

antioxidants, for 14 weeks. Suspend treatment if infection is present,

and retest the ratio every 8 weeks. Email acclydine@... for more

info, or call Bob Patton in Reno at 775-828-6011. There is speculation

that the inexpensive supplement lycopene may have effects similar to

Acclydine.

Miscellaneous hormones

johnleemd.com has good info for hormone problems.

Neuropsychiatric agents

The National CFIDS Foundation at www.ncf-net.org has Dr. Jay

Goldstein's treatment protocol, which is also described in his book

" Betrayal by the Brain. " He is now retired. A more detailed website is

http://home.vicnet.net.au/~mecfs/general/goldstein_treatment.html. Dr.

Goldstein's newest book is " Tuning the Brain: Principles and Practice

of Neurosomatic Medicine " . Ketterman's Pharmacy in NC at 888-305-0007

will compound thyrotropin releasing hormone eyedrops and nasal spray

for the Goldstein protocol.

Selegiline (deprenyl) is an MAO inhibitor that has been shown

effective for some PWCs by Dr. Natelson. Dosage can be found at

www.antiaging-systems.com.

Psychological approaches

Some patients have been helped by the program described at

immunics.org. Others have been helped by the Emotional Freedom

Technique described at emofree.com.

Adaptogens

vin (Rhodiola Rosea) has effects similar to those of Siberian

ginseng or Ritalin. 200-300mg per day is safe and effective. It's an

adrenalin modifier/buffer with antihypoxia effects, as well as

anticoagulant effects. It also increases hemoglobin and red blood cell

levels. It is available at

www.2ameriden.com/products/rosavinframe.html, www.beyond-a-century.com

(800-777-1324) and

www.naturalhealthconsult.com/_vit_bin/shtml.exe/Monographs/rosavin.html.

Prime One, available from

www3.cybercities.com/j/jnader/Primeone.html, is a liquid that contains

a variety of adaptogens including vin.

Amino Acid Therapy

Amino Acid Therapy aims to alter the levels of neurotransmitters in

the brain. Medicare will pay 80% of the cost for a neurotransmitter

test from NeuroScience at 866-651-0250. More testing and treatment

programs are described at neurorelief.com and sanesco.net, 866-670-5705.

The particular amino acid L-tryptophan is available from the

veterinary supplier BIOS Biochemicals in Arizona at 800-404-8185,

biosbiochemicals.com. If you have a prescription for L-tryptophan,

Apothecure at 800-969-6601 can fill it. German-made tryptophan is

available without a prescription from http://smart-drugs.net (they

also have growth hormone without a prescription). The daily dose of

tryptophan can range from 500mg to 3g, taken at bedtime. A good price

on tryptophan is at naturalpharmacy.com, 800-969-7228.

NADH

If you don't feel any effect on 5mg per day, don't hesitate to

increase immediately to 15mg per day. The effect of NADH should be

noticeable immediately.

Seacure

Seacure is a fish protein which is tolerated by many PWCs who cannot

tolerate other forms of protein. A good price is at

help4chemotherapy.com, 800-952-5884.

MSM

Methyl-sulfonyl-methane is helpful for pain, yeast control, allergies

and detoxification. It is contraindicated for patients with lupus,

however. Work up slowly to no more than 12g/day. Most patients have

trouble tolerating more than 6g/day. Many MSM products on the market

are badly contaminated, so buy the best quality you can find, such as

from NEEDS as given above.

Myo-inositol

1200mg (« teaspoon) per day of myo-inositol has been effective

(within 2 weeks) for some PWCs with hormonal problems. It seems

especially good for blurry vision. A related form is in trials right

now for polycystic ovary syndrome.

Maca

A cheap herb that mainly boosts energy. Order it from needs.com.

Exercise

The Chinese practice of chi kung has been helpful for some PWCs.

Learn more at http://hometown.aol.com/rivgibeaut/myhomepage/index.html.

Bounce chairs and mini trampolines (see picture at

needak-rebounders.com) are good forms of exercise for PWCs. Bounce

chairs can be purchased through Sun Ray Supply, and a mini trampoline

with handlebars is available for $250 from naturesdistributors.com,

800-624-7114. Also check excellentthings.net.

Liver Flush

There are a variety of ways to do liver flushes. Dr. Hulda

recommends a parasite cleanse prior to the liver flush, and recommends

ornithine during the flush.

NT Factor

NT Factor, or Propax, which contains NT factor, has been shown to

reduce fatigue.

SUPPLEMENT SOURCES

www.HealthNet.com is site run by a chiropractor who sells many

products normally available only to medical professionals. Call

888-787-7536.

Jo Mar Labs has a good combination of price and quality for those who

want to take specific amino acids.

Quality licorice extract is likely to be available from

chronicfatigue.org.

www.cfsn.com carries many supplements of benefit to PWCs.

Sun-Ray Supply at 800-437-1765, run by Dr. Cheney's parents, sells

many of the products Cheney recommends.

PRESCRIPTIONS

www.worldshare.org has good prices on prescriptions for those with no

insurance. Call 800-542-1110, or fax prescriptions to 800-232-4231, or

email to info@.... Also try immunesupport.com/shop/pharmacy.

The People's Prescription Plan at 800-667-6914 may help to save money

on drugs and supplements. Call your pharmacy before enrolling for $8

per month.

Destinationrx.com has a search engine for finding the lowest

prescription prices.

Borg Pharmacy at borgdrug.com in MN will sell generic drugs at just

over cost.

The AARP pharmacy at 800-456-2277 has very good prices for those over

50. Also consider the drug plan at mnseniors.net. Or try abcmedics.com.

Canadian pharmacies that may have good prices include medisave.ca,

canadianmedsusa.com, RealFastDrugstore.com, Canadameds.com and

TheCanadianDrugstore.com.

If you order drugs via the internet, be sure they are approved by the

National Association of Boards of Pharmacy at nabp.net. The site will

say " Verified Internet Pharmacy Practice Site " if legitimate.

Hocks.com and cottonballs.com have good prices on needles and

syringes. No prescription necessary, and they ship fast.

DISABILITY ISSUES

General Social Security Info

http://chronicfatigue.about.com/library/weekly/aa021600a.htm and

www.cfids-me.org/disinissues are both excellent sources of

information. Also check disabilityresources.org.

SSDI/SSI applications

When filing for Social Security Disability, insert the following

guidance into the application: " Please consult Social Security Ruling,

SSR 99-2p.; Titles II and XVI: Evaluating Cases Involving Chronic

Fatigue Syndrome (CFS). Use tracking code 9330. "

Consulting Lawyers

If you want to work with a lawyer on your disability application,

good ones are Harold McNeil at 619-528-2211, Bernie Kansky at the

National CFIDS Foundation, and at harris.davis@...

or davis1@... in Arizona. McBrayer Sasser in

Charlotte is a CFS disability lawyer who is also on the CFIDS

Association of America board. He can recommend other good CFS lawyers.

Call him at 704-342-4200. Free legal services can be located through

aba.net.org/legalservices/findlegalhelp, or lawhelp.org.

Physical disability testing

A brain test called Magnetic Resonance Spectroscopy (MRS) done by Dr.

Shungu at Columbia Presbyterian Medical Center in NYC is also helpful

for proving disability. To schedule a test, your doctor will need to

call the CPMC medical records department at 212-305-6151 to obtain a

medical record number for you. Then you must call MRI scheduling at

212-305-0989 and ask for an MRS appointment with Dr. Shungu, according

to the Shungu/Cheney protocol, which is described as follows:

Attention spectra of CSF in body of lateral ventricle plus the

spectroscopic analysis of the hypothalamus. The test takes 1 hour and

costs $1230. Newark airport is closest to CPMC, which is located at

177 Fort Washington @ 168 St., New York, NY on the upper west side of

Manhattan.

Prescription assistance

themedicineprogram.com has free or discounted medications for those

who qualify by low income. Also surf http://freemedicineprogram.com,

helpingpatients.org, rxhope.com, phrma.org/patients, usmedication.com,

http://womenshealth.med.ucla.edu, crl.com/~ibarnes/med/pharmacy.htm,

themedicinebridge.org, benefitscheckup.org, needymeds.com,

nonprofitwarehouse.com, patientassistancenetwork.org, rxassist.org,

institute-dc.org, thirdage.com/freestuff/health/i_chap5.html,

http://riveridepavillion/archives/free_rx.htm,

http://caregiver.com/march~april97/articles/free.html, pparx.org, and

medicaldiscounts.com.

Housing

Learn about a South Carolina housing project for PWCs at

pwcco-housing.org.

Transportation

A woman named Cheryl whose email address is sonogafer@... has

access to a private jet for persons in financial need to fly to see

Dr. Rosner in North Carolina for Chiari surgery.

Angel Flight Southeast at 352-326-0761, angelflightse.org or

angelflight.org/allmerger.html may also help with transportation. Or

try the National Patient Air Transport Helpline at npath.org.

American Airlines Miles for kids in need: P.O. box 619688 Dallas, Tx.

75261 # 817-963-8118 contact person is Debbie

Angel Flight Central Phone number is 800-352-4256 or 877-858-7788,

angelflightamerica.org

Care Force Contact person Bob Jack p.o. box 3816 Humble, In. 77347 #

281-261-6626

Continental Airlines/Medical Necessity Program # 1-800-468-7022

Corporate Angel Network Inc. Contact person is Tom azzi 1 loop

rd. White Plains, NY. 10604 # 914-328-1313 www.corpangelnetwork.org

Kids Care program/Northwest Airlines Contact person is

Ebdling Fax # 612-726-3942

Mercy Medical Airlift # 1-800-296-1217

Miracle Flights for Kids Contact person is Dinnah Madrigal

702-261-0497 www.miracleflights.org

National Patient Travel Helpline www.patienttravel.org 1-800-296-1217

Southwest Airline Travel Prpgram Contact person Tracie #

214-904-4103

The Air Care Alliance Contact person is Doug # 918-745-0384

Wings of Freedom # 407-363-1991

Air Life Line # 877-247-5433 www.airlifeline.org

Angel Flight ( of Georgia) they can give you the contact info for your

area

1-770-452-7958

Mercy Medical Airlift

1-888-675-1405

Miles For Kids (American Airlines) 1-800-882-8880

Southwest Airlines

1-214-792-4103

Wings of Angels

1-800-214-4669

NPATH

www.npath.org or 1-800-296-1217

Continental Care Force (Bob Jack, volunteer administrator) 1-281-261-6626

AirLifeLine

1-800-444-1231

Delta Air Lines Skywish Program

1-800-892-2757

Operation Lift Off

1-888-354-5757

>

> I finally (after being on this list for months) thought to go look in

> the Files section. I look forward to reading some of the reference

> material over there.

>

> The Toyota Prius list I belong to has an excellent FAQ section that

> newbies are referred to. I wonder if someone(s) who have been wading

> through all this longer than I have might consider putting together an

> overview/FAQ of the topics most frequently covered? It doesn't have to

> be a " this is THE WAY " statement, I was thinking more like " these are

> the various things that are suspected or under investigation " . If

> something's been covered in depth before, maybe a note pointing the

> new reader to that area of the archives.

>

> That'd save some repetition for the " old hands " and make valuable

> information more available to new readers.

>

> Unfortunately I'm still new enough that I wouldn't know what to put in

> such an FAQ, but I can cheer people on from the sidelines!

>

> Maybe we could solicit questions from list members. Howzabout, " How

> many people in the US have a CFS-like condition? " and compare to the

> numbers with other diseases. Or " Is there a standard treatment for

> CFS? " and " What to do when your doctor dismisses your pain or

> fatigue? " Or maybe a note about what treatments are *not* considered

> experimental anymore, and thus not discussed here, since this is the

> CFSMExperimental list.

>

> Shoot. I was on a roll, and now my brain just crashed. Anyhow, you get

> the idea.

>

>

> Marcia on

>