1. Stress Relief Chapter for CFS - Highly Recommended!

[Guest guest]

I have to seriously consider my CFS problems do come from long time,

persistent stress and family problems. Can anyone with more

authority organize a pool to see HOW Many of us do have a history of

serious and long term stress or wrongdoing done onto them as a cause

for current condition?

This would be opposite of believing one got simply accidentally

infected with something ... In such case (and not only ...?) Stress

Relief is also a Necessary condition for healing ..., so it would be

important to know ...! Being sick becomes a stress in itself, this

may make CFS long lasting and hard to cure ...

My (very complicated ...) page is at

http://www.philfrisk.net/~adrian/ .

It may be easier to start with the site map at

http://www.philfrisk.net/~adrian/index_automatic/index_automatic.htm

Thanks to Mr. A. Van Konynenburg, Ph.D. for having created

this wonderful material below ...!

Regards,

[mycoplasma-research] Suggested general outline for dealing

with cases of CFS

Hi, Nico and the group,

I wrote this nearly a year ago, but I think most of it is still what

I believe:

February 26, 2004

SUGGESTED GENERAL OUTLINE FOR DEALING WITH CASES OF

CHRONIC FATIGUE SYNDROME

by

A. Van Konynenburg, Ph.D.

(richvank@...)

Disclaimers

I am an unlicensed independent researcher with a background in the

physical sciences and engineering. I have been studying chronic

fatigue syndrome (CFS) as an avocation for more than seven years.

Though I am not a clinician or a practitioner and do not accept

remuneration from clinicians, patients, or vendors of the products

mentioned herein, I have attached a disclosure statement about

myself at the end of this document, in keeping with the spirit of

that part of the California Business and Professions Code that

pertains to complementary and alternative health care services.

Where particular products or laboratories are cited in this general

outline, these citations are intended as possibilities rather than

specific endorsements. These possibilities are not intended to rule

out other products or laboratories that may also be available.

Clinicians or persons with chronic fatigue syndrome who choose to

follow this general outline do so at their own risk. In particular,

as an unlicensed researcher I am not authorized to prescribe

pharmaceuticals. Where these are mentioned, they are intended only

as possibilities for consideration by licensed health care

practitioners, who remain responsible for their prescription.

I am hopeful that this general outline will be of help to those

suffering from chronic fatigue syndrome as well as those who treat

them.

Basis

What follows is based on my own hypotheses about CFS and on what I

have learned from researchers and clinicians who specialize in

treating these disorders, from papers, books, and conferences, and

from interactions with people on internet lists, during my years of

focusing on this disorder. My thoughts on effective methods of

coping with this disorder continue to change as I learn more, but

this is a snapshot of my present views. While I cannot guarantee

that they will bring about a cure of CFS, I am confident that they

can improve the quality of life for many PWCs (persons with chronic

fatigue syndrome).

Audience

This paper is written both for clinicians who treat CFS and for PWCs

themselves. Many of the actions discussed herein can only be

performed by PWCs on their own behalf. Other aspects can only be

performed by licensed health care professionals. It is my hope that

this general outline will foster increased cooperation between PWCs

and clinicians to improve the methods for dealing with CFS

Application

This general outline is intended to apply to PWCs who have been

diagnosed as having CFS according to " Myalgic

Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case

Definition, Diagnostic and Treatment Protocols, " by Carruthers, et

al. (Journal of Chronic Fatigue Syndrome, vol. 11, no. 1 (2003)).

These diagnostic criteria were developed by a consensus committee

under the auspices of Health Canada.

This general outline is also appropriate for PWCs diagnosed under

the older Fukuda et al. international research case definition

developed under the auspices of the U.S. Centers for Disease Control

and Prevention in Atlanta, GA.

It is particularly important to make efforts to rule out Lyme

disease in people who have CFS-like symptoms. This has been very

difficult to do, and many have suffered from Lyme disease for years

while carrying a diagnosis of CFS. The NIH has recently announced a

new test for Lyme disease. If it turns out to be reliable, it will

be a major contribution.

Multifaceted Nature of Approach

To be most beneficial, a treatment program for CFS must be

multifaceted, combining several types of interventions. The reasons

for this are that CFS affects the human organism at a very

fundamental level, and it has an exceedingly complex pathogenesis,

composed of many steps, interactions, and vicious circles, many of

which still remain to be elucidated. The longer a PWC has been ill,

the more involved this pathogenesis becomes. A single treatment

intervention will not be sufficient to break through this web.

Figuratively speaking, to bring a PWC back out of the CFS pit, she

or he must be lifted at several places, some of them simultaneously,

others in appropriate chronological order. Most of the clinicians

who treat many PWCs (including Dr. Cheney and Dr.

Teitelbaum) have found that a multifaceted treatment approach is the

most effective.

Subsets and Tailoring to Individual PWCs

The PWC population as currently defined by the above diagnostic

criteria is heterogeneous, composed of many subsets. There are few

serious CFS researchers who doubt this, and many are now emphasizing

the importance of separating the subsets in order to make further

progress in understanding the causes of CFS. Consequently, a

single, uniform treatment protocol is not appropriate and will not

be effective for all PWCs. In the general outline described here,

there are many parts, and I have attempted to point out criteria for

inclusion of the various parts when tailoring to an individual PWC.

Chronological Order of Interventions

Some of the aspects of this general outline are best carried out in

a certain chronological order. This order is based on the

interactions and vicious circles that are characteristic of the

current pathophysiology of the PWC rather than on the order in which

the various body systems were affected during the pathogenesis.

Where the order of interventions is important, I have specified it,

to the best of my current understanding.

Description of the Parts of the General Outline

1. Stress Relief

Many PWCs were overloaded by various types of long-term stressors

prior to the onset of their symptoms, and some continue to be so.

There is considerable published research supporting the observation

of stressors in the etiology of CFS. In an initially healthy human,

the long-term stress that results from these stressors causes the

secretion of adrenaline and cortisol by the adrenals for extended

periods, and these lead to suppression of cell-mediated immunity and

depletion of glutathione, which in turn can produce a range of

deleterious effects, leading to CFS in genetically susceptible

individuals. Unless the load of stress is lifted or at least

greatly reduced, it is probably not possible to achieve health, so

this aspect should be dealt with early.

Even though it may be extremely difficult to do, it's important for

PWCs to do whatever they can do to relieve their load of various

kinds of stressors, including physical, chemical, biological,

mental, and emotional stressors. This includes changing their actual

life circumstances as well as changing how they respond to these

circumstances. They may have to make some hard decisions and stick

to them. If they have not already dropped out of their employment,

they may have to. If there are interpersonal interactions in their

lives that cause them excessive stress, they will either need to

make peace with the people involved or minimize their interactions

with them. If their living environments are exposing them to

significant amounts of chemical toxins or irritants, it will be

critical for them to eliminate these substances or to move to other

dwellings. If they are overdoing physical exercise or exertion,

they will need to moderate it. If they are repeatedly being exposed

to infections, they will need to isolate themselves from the sources

of these infections.

Pacing is an important habit for PWCs to develop. Before becoming

ill, many PWCs were achievement-oriented, action-prone, " Type A, "

hard driving people. Recovery from CFS will demand a fundamental

change in this approach to life. Instead of attempting always

to " do one's best, " a PWC may need to come to terms with doing

something that is quite good enough. Tomorrow is another day.

Balance is called for.

Instead of ignoring signals from the body that rest is needed and

forging full steam ahead, a PWC should develop the habit of heeding

these signals and lightening the load. This advice may seem like

heresy to a person whose life has been oriented since childhood

toward maximum achievement or perfection, but I believe it's the

correct advice when it comes to promoting recovery from CFS.

Once PWCs have made the changes necessary to reduce their stress to

a manageable level, they must seek to improve the ways in which they

cope with their remaining stress: they should consider activities

such as listening to music, meditating, praying, practicing yoga,

watching comedy videos or radio programs, developing their sense of

humor, and enjoying nature. If they have deep-seated animosities

because of past wrongs done to them, they should work on developing

the ability to forgive. Different things work for different people.

Of course, it is much easier to talk about reducing stress and

coping with it than to actually do these things. The degree to

which PWCs can reduce the stress in their lives depends on what

their financial picture is, whether or not they have a supportive

social structure, and other factors. But the more they can rid

themselves of stress and/or learn to cope with it more effectively,

the better will be their chance for recovery.

2. Exercise

There is a continuing controversy over the benefit of exercise in

CFS. My view of this is that too much exercise, particularly of

aerobic types, is damaging to a PWC, but appropriate amounts of the

right kinds of exercise can be beneficial.

I believe that damage to the skeletal muscle cells occurs as a

result of the increased production of oxidizing free radicals during

aerobic exercise, in the presence of an ongoing condition of

oxidative stress in these cells. There are now several papers in

the literature reporting on elevated measurements of markers of

oxidative stress in CFS. It is well-established that oxidizing free

radicals are produced in the normal course of metabolism, and that a

higher rate of metabolism will result in a higher rate of production

of oxidizing free radicals. I believe that this accounts for the

observed " post-exertional malaise " that may extend for days after a

PWC gets too much exercise.

Movement, stretching, and resistance exercise are important for the

health of the joints, the bones, the lymph system, the circulatory

system, the vestibular (balance) system, the tendons and muscles and

the digestive system. The joints require physical movement in order

to bring nutrients to the cartilage via the synovial fluid. The

maintenance of strong bones requires mechanical stress in the

bones. The lymph system requires the action of skeletal muscles to

move lymph from the periphery of the body into the thoracic duct and

thence into the circulatory system. The circulatory system requires

muscle action to assist in returning blood to the heart, as well as

in preserving the tone of the heart muscle and the condition of the

overall circulatory system. Bouncing type exercise (such as on a

small trampoline or a chair suspended with springs) has been found

helpful for the vestibular system. The muscles and tendons require

exercise to stay in condition, and exercise can also help to relieve

muscle pain. The digestive system benefits from exercise in

maintaining proper motility.

PWCs should get regular exercise, but should not overdo it. They

should approach exercise cautiously, doing less than they think they

can, and waiting until the next day or two to decide whether they

are able to tolerate it at the level achieved. Increases in exercise

parameters should be entered upon cautiously. PWCs should avoid

aerobic exercise, but carry out stretching, movement, and short-term

(non-aerobic) resistance exercise. For people who have

fibromyalgia only, without symptoms characteristic of CFS, even

aerobic exercise can be helpful.

3. Relief of Pain

Muscle pain, and to a lesser extent joint pain, are major symptoms

for many PWCs. Most of this pain does not appear to be associated

with observable tissue damage, but rather seems to originate in

malfunction of the sensory parts or pain signal processing parts of

the nervous system. Since severe pain can interfere with the

ability to obtain restorative sleep and can also stimulate the

hypothalamus-pituitary-adrenal axis, it should be dealt with before

treating sleep problems or the neuroendocrine system. Some pain

relief can often be obtained from appropriate exercise, such as

stretching and relaxation, as mentioned above. Pain relief can also

often be obtained from massage, acupuncture, chiropractic, physical

therapy, or local or general heating. Far-infrared heating, in

particular, appears to offer advantages. Pharmaceutical pain

relievers are often used by clinicians. Their benefits must of

course be weighed against their side effects, and in the case of the

more potent ones, their habituation tendencies.

4. Sleep

Sufficient deep, restorative sleep is very important for several

reasons. Human growth hormone is secreted by the pituitary gland

during the deepest stages of sleep (Stages 3 and 4). This hormone is

necessary to carry out repairs while we sleep. In addition, memories

of daily events are fixed in our brains during sleep, and poor sleep

quality can lead to deficits in short-term memory. Biochemical

energy supplies are restored in the brain during sleep. There are

probably many more benefits of restorative sleep that are not yet

understood.

PWCs should do what they need to do to get the amount of restorative

sleep nightly that is sufficient for them to feel rested when they

awaken. Seven to eight hours per night is appropriate for most

people. This should start with avoiding foods (such as caffeine) and

activities in the period before bedtime that tend to keep people

awake. It's important to have a regular bedtime and a quiet, dark

place to sleep

with a comfortable temperature and a reasonably comfortable

mattress. If this doesn't bring restorative sleep, then PWCs should

look into the possibility that they might have sleep apnea, as

follows: If he or she has a sleeping partner, the partner can be

asked whether he or she has noticed that the PWC stops breathing for

periods of time while sleeping, a sign of sleep apnea. If the PWC

frequently awakens with a gasp or a snort, this is another sign of

sleep apnea. Snoring or a neck size larger than 17 inches are other

risk factors for sleep apnea. If suggestions of sleep apnea are

present, a clinician can order a sleep study to determine whether a

PWC has this condition for sure, and if so, a CPAP machine may be

helpful. If these measures don't bring restorative sleep, then the

orthomolecular substances should be tried first, such as a magnesium

supplement or melatonin at bedtime. If they don't correct the

problem, an herbal mixture including valerian, passion flower, kava

kava, and others (such as from www.immunesupport.com) should be

tried. If that doesn't work, the clinician should consider

prescribing zolpidem (Ambien). Antihistamines such as Benedryl

(diphenhydramine) may promote sleep, but may also interfere with

deep-stage sleep.

5. Air

Many PWCs suffer from respiratory allergies, multiple chemical

sensitivities, and/or deficits in the operation of their

detoxication system. Therefore, it's important for them to be able

to breathe air that is free of toxins, allergens, and substances to

which a PWC may have a chemical sensitivity.

The home heating system should be checked for leakage of carbon

monoxide into the living space. Furnishings and building materials

that outgas volatile substances such as formaldehyde or emit mold

spores should be eliminated. A high efficiency particulate air

(HEPA) filter should be installed to remove pollens and dusts, if

they cause allergic reactions.

6. Water

It is important to drink sufficient water for proper hydration of

the body and for proper operation of the bowels. Many PWCs have a

higher than normal requirement for water, because they suffer from

central diabetes insipidus (not the same as the more common diabetes

mellitus). Central diabetes insipidus results from insufficient

secretion of antidiuretic hormone by the hypothalamus and pituitary

gland, and this causes the kidneys to pass too much water into the

urine. The result is constant thirst and low blood plasma volume.

The latter exacerbates problems with orthostatic intolerance

(inability to stand for a significant length of time because of poor

blood supply to the brain).

Several of the minerals found in natural waters are among those

essential to the body, and many PWCs are deficient in some of them,

particularly magnesium and calcium.

As noted above, the detoxication system is not operating properly in

many PWCs (primarily because of glutathione depletion). Therefore,

minimizing the content of toxins in ingested water is important.

A PWC should obtain a supply of clean water to drink. It's best if

it does not contain chloride, fluoride, or significant amounts of

heavy metals, organic toxins, or bacteria, but the minerals needed

by the body, such as calcium and magnesium, should not be removed.

Distilled water or water that has been through reverse osmosis are

not the best choices, because they do not contain these minerals. A

home tap water filter that includes a charcoal filter to remove

heavy metals and organic toxins is a good investment.

7. Orthostatic Intolerance

Many PWCs suffer from orthostatic intolerance, manifested as

orthostatic hypotension (sometimes diagnosed as NMH or neurally

mediated hypotension) or postural orthostatic tachycardia (POTS), or

both. These can involve a low blood plasma volume or pooling of

blood in the lower body when standing, or both.

The blood plasma volume can be increased to some degree by drinking

more water, together with added salt. It's important to make sure

that enough potassium is taken in to maintain the sodium/potassium

balance in the body. Fresh, non-starchy vegetables are good sources

of potassium without abundant sugars.

Blood pooling can be counteracted by the use of support hose. The

tightness should be selected to prevent blood pooling, but should

allow sufficient blood circulation in the legs and feet.

Taking supplemental tyrosine at a dosage of up to 1,500 mg per day

is another thing to consider to counteract blood pooling, because

tyrosine is the substrate for making norepinephrine, the

neurotransmitter used by the sympathetic nervous system to contract

the muscles around the veins in the lower body. There is evidence

of low tyrosine in some PWCs and of a deficit in norepinephrine

production in some with othostatic intolerance.

Fludrocortisone has been prescribed by some clinicians as a

treatment for orthostatic intolerance in PWCs, but its efficacy is

not clear. Midodrine has also received some testing, and has been

helpful for some with orthostatic hypotension. It is an alpha-1

adrenoceptor agonist, and thus acts in place of norepinephrine to

constrict blood vessels. Clinicians should be alert, however, to

possible excessive elevation of supine blood pressure by this agent.

8. Diet and Nutrition

The normal, healthy human body has requirements for about 40

essential nutrients to support its biochemistry and sufficient

calories to provide the needed energy. Under normal conditions the

gastrointestinal system is able to obtain enough of these nutrients

from the diet to supply the needs of the cells to a significant

degree (though perhaps not an optimum degree), and the cells are

able to metabolize the nutrients from food to maintain normal

function and at least a nominal condition of health.

In the case of PWCs, there are two categories of problems in this

area. First, while the gastrointestinal system functions well in

some PWCs, in many others it does not. Second, in many PWCs the

skeletal muscle cells in particular are not able to carry out

oxidative metabolism of absorbed fuels in a normal manner or at

normal rates. (This appears to be a result of partial blockades in

the Krebs cycle produced by a rise in peroxynitrite secondary to

glutathione depletion. Prof. Pall has theorized and

published extensively about peroxynitrite in CFS.)

With respect to the first category, it is important for the PWC and

the clinician to assess the function of the gastrointestinal system

at the outset to determine the best approach to diet and nutrition

in the particular case. At one extreme are those whose G.I. systems

are in such disarray that they are suffering from serious

malnutrition and deficiencies. These PWCs have difficulty retaining

sufficient body weight and suffer in many ways from the lack of

essential nutrients. At the other extreme are those who appear to

have normal function of their digestive system, and who may have

great difficulty avoiding constant weight gain. In between are most

PWCs, who experience varying degrees of malfunction of this system

and may have some deficiencies in nutrients.

Problems with the digestive system that are commonly found in PWCs

include lack of sufficient stomach acid, overgrowth of yeasts and/or

deleterious bacteria in the intestines, intestinal permeability,

food allergies, sensitivities or intolerances, and irritable bowel

syndrome. Celiac disease is occasionally found.

In cases of serious malfunctions of the gastrointestinal system that

are producing malabsorption and serious deficiencies of essential

nutrients, clinicians should consider intravenous nutritional

interventions, such as the Myers cocktail. This approach bypasses

the gastrointestinal system and delivers essential nutrients

directly to the cells via the blood stream. This may be the only

way to get the boost needed to begin recovery of health.

If there are problems with the digestive system, it is important to

deal with them before doing the other things discussed below.

Specifically, if the digestive system is not producing at least

daily, well-formed, normal-colored, normal-appearing stools, and the

PWC is not free of symptoms such as excessive gas (belching or

flatus), bloating, intestinal cramps, diarrhea, constipation, poor

stomach motility, gastroesophageal reflux (heartburn), and/or

multiple food allergies or intolerances, then the gut needs to be

dealt with before other aspects described below are entered upon.

There are several reasons for this: a. An efficiently performing gut

is necessary to absorb nutrients adequately. Without them, the body

won't be able to obtain what it needs to get well. b. The gut is the

final pathway for dumping many toxins. If a PWC has had CFS for an

extended period of time, the body will have large burdens of toxins,

because the detox system has not been functioning well (largely

because of the depletion of glutathione), and the toxins will have

had time to build up. There must be a clear pathway to carry the

toxins out before one begins to mobilize them, or they will be

recirculated and may end up in a worse place than where they were

located initially. For example, more of them may be moved into the

brain. c. If the PWC has dysbiosis and leaky gut, the resulting

absorption of antigens directly into the blood stream from the lumen

of the gut will be placing a heavy load on the immune system, and it

may not be able to recover unless this load is lifted first.

Clinicians should first rule out structural causes for

gastrointestinal symptoms by conventional diagnostic methods. If

structural abnormalities are not found, a Comprehensive Diagnostic

Stool Analysis (CDSA) such as is available from www.gsdl.com, should

be performed. If parasites are suspected, a detailed

parasitological stool analysis should be performed, such as is

available from www.parasitetesting.com. The results of these tests

should be used to augment the bowel treatment program discussed

below with specific additional remedies as needed.

I suggest considering the bowel treatment program described by Dr.

Serafina Corsello in her book " The Ageless Woman, " available at

www.corsello.com. This program includes bowel cleansing, soothing

and repopulation with probiotics. The detailed ingredients used are

given in the book, and are all non-prescription items.

In addition to this bowel treatment program, the most beneficial

things for promoting normal function of the gut are eating

sufficient fiber in the diet (fresh fruits and vegetables and whole

grains), drinking enough water, and getting sufficient (but not

excessive) exercise.

Turning now to the second category of problems in diet and nutrition

in CFS, many PWCs have partial blockades in the Krebs cycles of

their red, slow-twitch skeletal muscle cells, and these cells are

thus not able to metabolize carbohydrates completely to carbon

dioxide and water. When a PWC with such partial blockades continues

to consume too many carbohydrates, especially those of high glycemic

index, the results may be surges of insulin, hypoglycemia, and

conversion of carbohydrates to stored fats, resulting in persistent

weight gains.

The metabolism of fats is also limited in many PWCs by the Krebs

cycle partial blockades, and transfats in particular interfere with

the proper metabolism of the essential fatty acids and distort the

structures of cell membranes.

Proteins are utilized as fuel at higher rates than normal in the

bodies of many PWCs, because they are broken down into amino acids,

which are to some degree interconvertible by transamination

reactions, and some of them are able to compensate for the Krebs

cycle partial blockades by anaplerosis, and thus to be used

effectively for fuel.

As a result of the above, many PWCs find that they feel much better

on a diet that is relatively high in protein and relatively low in

carbohydrates and fats, especially low in foods containing

significant amounts of sugars and white, starchy foods such as

potatoes, rice, pasta, and bread, and also low in saturated fats and

transfats. It is important to choose proteins that do not provoke

an allergic response. Meats are often better tolerated than dairy

foods or eggs. Vegetables that grow above the ground are good

choices to supply essential nutrients and fiber.

With regard to determining the status of the essential nutrients,

including the vitamins, the minerals, the essential fatty acids, and

the essential amino acids, the best approach is to perform blood

tests, such as those offered by www.metametrix.com and

www.bodybio.com. With results of such testing, it will be possible

to emphasize supplementation of those nutrients which are

deficient. If this is not feasible, then I suggest regular

ingestion of a high-potency general nutritional supplement such as

Sparx (www.krysalis-sparx.com), two teaspoons of essential fatty

acids with the ratio of four-to-one linoleic acid to alpha linolenic

acid, and an undenatured whey protein product such as ImmunoPro Rx

(for example, from www.immunesupport.com).

Certain nutrients have been found to be especially helpful to many

PWCs. These include I.M. or S.C. injections of hydroxocobalamin

(vitamin B12) at relatively large doses--10,000 micrograms or more

per injection, two or three times per week. I.M injections of

magnesium sulfate (100 mg per week) together with taurine (This one

is painful, but the taurine helps), together with 600 mg magnesium

as glycinate or malate per day, taken orally. L-carnitine comes in

here, too, at 1 to 2 grams, three times per day. It's important to

take lots of antioxidants to counter the condition of oxidative

stress: 2 grams of vitamin C per day, in divided doses, some

bioflavonoids, coenzyme Q-10 (100 mg per day, provided it is

tolerated), and 400 I.U. per day of vitamin E. Alpha lipoic acid

should be avoided if there is likely a high body burden of methyl

mercury (such as if the PWC has been eating a lot of large predatory

fish, such as tuna or swordfish or shark, especially). Otherwise,

alpha lipoic acid can help to build glutathione, and 100 to 300 mg

per day can be used. S-adenosylmethionine (SAMe) can be helpful, at

400 mg, 2X per day, orally (Those with bipolar or manic-depressive

disorder should avoid taking SAMe, because it can bring on the manic

phase.)

There are also some things that should be eliminated from the PWC's

diet: caffeine, alcohol, MSG, Nutrasweet, food colorings, and other

artificial food additives.

More information on diet and nutritional approaches in CFS can be

found in Chapter 27 of the Handbook of Chronic Fatigue Syndrome

(Edited by L. et al., Wiley, Hoboken, NJ, 2003), which was

written by the present author.

9. Building the Detoxication System and Flushing Out Toxins

As noted above, toxins build up in the PWC's body over the course of

the illness, primarily because of glutathione depletion.

Glutathione is responsible for Phase II detoxication of several

important categories of toxins, and it also serves as the basis for

the antioxidant enzyme system, which among other things is necessary

to deal with oxidizing free radicals produced during Phase I

detoxication of many toxins.

Important work has been done on detoxication in recent years by

Ritchie Shoemaker, M.D., and by Kane, Ph.D. and her

coworkers. I suggest that clinicians obtain a copy of The Detoxx

Book by , Kane and Speight (www.detoxxbook.com) and consider

the protocols described therein. They include intravenous

injections of glutathione and phosphatidyl choline as well as oral

supplementation with appropriate oils and lipids. These measures

serve to augment the body's supply of glutathione as well as to

replenish the fatty acids needed by the body and to promote flushing

of the liver, gall bladder and biliary tract.

Other methods of helping the body to build glutathione include use

of oral undenatured whey protein products (such as ImmunePro Rx,

available from www.immunesupport.com). Use of these in CFS was

pioneered by Cheney, M.D., Ph.D. This is a very powerful way

to build glutathione. For those who have allergies to whey protein,

the use of oral N-acetylcysteine (NAC) and the other amino acids

making up glutathione (glycine and glutamic acid or glutamine) is

preferable. Jeff at www.cfsn.com sells such amino acid

precursors for building glutathione. (Some PWCs react badly to

anything that contains sulfur, which whey protein and NAC do. If

this is the case, they should consider taking 250 micrograms of

molybdenum and 100 mg of vitamin B-6 per day, and

starting slowly on the NAC or other sulfur-containing supplements.

It should be noted that it is not always easy to build the

glutathione levels back up to normal, because there are numerous

vicious circles that make this difficult, especially if the PWC has

been ill for an extended period of time.

When the glutathione begins to build back up, both the detoxication

system and the immune system will start to come alive, and they will

start moving toxins into the blood stream. This may produce an

exacerbation of symptoms known as the Herxheimer reaction, and this

may require a reduction in dosage. Having generous amounts of

indigestible fiber in the diet at this time is helpful to bind

toxins in the gut and carry them out in the stools.

10. Correcting Low Metabolic Rate and Furthering the Detoxification

Many PWCs have a lower than normal metabolic rate in their skeletal

muscles as a result of the partial blockades in the Krebs cycles

there. The results are that they exhibit a low armpit temperature

and they feel cold much of the time, even if they have normal

thyroid function (which many don't). In addition, many PWCs have

accumulated various toxins in their bodies, as noted above. Use of

far infrared (FIR) heating serves to simultaneously raise the

metabolic rate and sweat out toxins. Sherry has been a

proponent of FIR for detox. It's important to use FIR heating,

which penetrates into the tissues, and not other types of heating,

such as standard near-infrared bulbs, dry or wet ordinary saunas, or

hot baths or showers, because these methods deposit heat primarily

in the skin. Heating the skin results in dilating the arterioles

that supply blood to the skin, and in many PWCs this will provoke

low blood pressure or tachycardia because of lack of sufficient

blood flow to the brain.

PWCs who feel cold much of the time, or who have armpit temperatures

upon awakening that are significantly below normal, should consider

FIR heating. In the order of cost, beginning with the lowest cost,

this is available in the forms of individual FIR lamps, FIR heaters

that stand on the floor, FIR sauna tunnels, and upright FIR saunas.

One approach (pioneered by Jim Clements) is to get two FIR heaters

(so you can sit between them) and use them for about 15 or 20

minutes a couple of times per week. Unless a tunnel or full sauna

is used, it may be necessary to warm the room first (a small room is

best, such as a closet or bathroom), and it may be necessary to

outgas vapors from the walls or wall coverings by heating and

ventilating the room before it is used with the heaters. FIR

heating seems to help people most who feel cold, and who have

orthostatic intolerance (and thus cannot tolerate other ways of

heating the body, such as hot showers, without feeling faint).

Considerable water and minerals are lost in the sweat during FIR

heating, so it is important to replace them by drinking lots of

water before and during the heating, and also to take enough of a

good multimineral supplement. Replenishment of magnesium and zinc

is particularly important. This heating often feels very pleasant,

and it is easy to overdo it, so care must be taken to approach this

gently. If a PWC begins to feel worse after undertaking a program of

FIR heating, she or he should try backing off on the total amount of

time it is used per week, and/or increasing the intake of water

and/or minerals.

11. Removal of Heavy Metals

Many PWCs have accumulated considerable body burdens of toxic heavy

metals, again because of their longstanding glutathione deficit. One

heavy metal that is very commonly elevated is mercury, because of

its constant evaporation and corrosion from amalgam fillings in the

teeth, and because of the consumption of large predatory fish,

including tuna.

It is important to test for heavy metals before initiating efforts

to remove them. I suggest a combination of hair testing (as for

example by Doctor's Data Laboratories) and urine testing after

challenge by a chelating agent such as DMSA (succimer) (as offered

by the King Laboratory in Ohio, for example). Blood and stool

tests are also available, and there are proponents for each.

If excessive mercury is found, its removal from the body must be

done very carefully, because otherwise it is possible to mobilize it

and transfer it into the brain and nervous system, where it acts as

a neurotoxin.

In the field of toxicology, one of the time-honored principles in

treating toxicity is to first remove the source of the toxin. This

has led many PWCs, when they became aware of the sources of mercury

in their teeth, to rush to have their amalgam fillings removed.

Based on the unpleasant experiences of several who have done this, I

suggest that it is important first to properly build up the

detoxication system as described above, so that mercury that is

released to the body during the removal of the amalgams can be

properly dealt with. In addition, it is important to select a

dentist who uses measures for minimizing the mercury exposure of the

patient from this procedure, such as abundant water cooling to keep

the amalgam material cool during drilling, a high volume air suction

device to remove mercury vapor to prevent its inhalation, and a dam

to prevent the swallowing of mercury-containing material.

There are several agents available for chelation of mercury. I

recommend that an experienced specialist in this field be consulted,

since there are many pitfalls.

12. Inflammation and Local Extracellular Bacterial Infections

Many PWCs are suffering from inflammation and local infections. I

believe that these are exacerbated by the low output of cortisol in

many PWCs after their onset, as a result of HPA axis malfunction.

These infections should be sought out, based on the PWCs medical

history and symptoms, and by specific testing of suspicious areas.

Common examples are infected root canals, infected cavitations where

teeth have been pulled, sinus infections, and infections in the

nasal passages. Problems in the teeth and gums may require removing

teeth or cleaning out cavitations. An experienced oral surgeon is

needed for this. Sinus infections can be bacterial or fungal or

both, and may need to be treated with both antibiotics and

antifungals. Coagulase-negative staphylococci, which used to be

considered innocuous, may not be so for PWCs, and may need to be

treated with a combination of antibiotics. Pioneering work in this

area has been done by Neil McGregor, Ph.D., in Australia, and by

Ritchie Shoemaker, M.D., in land. Testing for coagulase-

negative staphylococcus is not routinely done, but is available from

Esoterix (www.esoterix.com) by culturing of deep nasal swabs.

13. Viral and Intracellular Bacterial Infections

In CFS, it is commonly observed that the immune response has been

shifted to the Th2 mode, away from the Th1 mode. I think this

results from long-term elevated cortisol prior to onset, followed by

glutathione depletion. Some pathogens are also able to promote this

continuing shift in their own self interest. Because of this shift

PWCs are particularly vulnerable to viral and intracellular

bacterial infections, which require a viable Th1 response for their

defeat. Many of the viral infections found in PWCs appear to result

from reactivation of latent endogenous viruses of the herpes family.

Testing should be done for Epstein--Barr virus, cytomegalovirus, HHV-

6, mycoplasma, and Chlamydia as a minimum, as these are most

commonly found in CFS. PCR testing for these pathogens and others

found in CFS is performed by www.mdlab.com.

Berg of Hemex Labs in Phoenix has pointed out that in many

PWCs there are genetic variations in proteins of the blood clotting

cascade that lead to hypercoagulation when the immune system

responds to infections. His lab offers tests for this condition.

If present, hypercoagulation can be countered by low dose heparin

and by nonpharmaceutical substances such as lumbrokinase and

nattokinase. It is very important not to counter only the

hypercoagulation alone, but also to simultaneously combat the

infectious agent involved. Otherwise, the infection can become

worse, as can the hypercoagulation in response to it.

Most of these infections are suppressed by a healthy immune system,

and Cheney, M.D. reported that glutathione rebuilding was

effective for restoring the ability of the immune system to put them

down. In addition, many herpes family viruses can be suppressed by

taking 3 grams of L-lysine per day, and avoiding foods that are high

in arginine, such as chocolate and nuts. Nonpharmaceutical antiviral

substances include oil of oregano and olive leaf extract. There are

also pharmaceutical antivirals that are effective for some of these

viruses. Antibiotics can be used to treat mycoplasma and Chlamydia

infections.

Some PWCs have viral infections in the brain, i.e. viral

encephalitides. These are difficult to knock out, but some are

treatable with existing antivirals, as has been shown by

, M.D. of Incline Village, NV. Testing for these infections

involves performing analyses, including PCR analyses, on spinal

fluid taken from a spinal tap (lumbar puncture). PCRs who have

pressure-type headaches and a variety of neurological symptoms are

suspects for having encephalitides.

Transfer factors (such as are available from www.immunesupport.com)

are another approach that has been found effective in suppressing

viral infections in PWCs. ph Brewer, M.D., of Kansas City has

reported success with transfer factors against HHV-6 infections.

As mentioned in the Application section, another very important

pathogen to test for is Borrellia Burgdorferi, the spirochete that

is responsible for Lyme disease. It is important also to test for

other tick-borne disease, such as babesiosis and erlichiosis. This

is especially important for PWCs who have spent time in brushy or

wooded areas where deer and mice live. Up to this point, there have

not been completely reliable tests to distinguish between long-term

disseminated Lyme disease and CFS, but clinicians should consider

the tests offered by www.igenex.com and by

www.immunoscienceslab.com, together with use of clinical diagnosis.

It remains to be seen whether the new test recently announced by the

NIH will prove to be more reliable than past tests.

14. Supporting the Immune System

To achieve long-term control of infections, it is necessary to have

a healthy immune system. Supply of the essential nutrients for the

proper operation of the immune system has been covered in the

section on Diet and Nutrition. The replenishment of glutathione,

which is also very important for the immune system, has also been

covered above. The elimination of inflammation, bacterial

infections, and the suppression of viral and intracellular bacterial

infections will go a long way toward taking the load off the immune

system, and this has also been discussed above. The neuroendocrine

system, which has significant effects on the immune system, is

discussed in the next section. Because of the interactions between

them, these two systems should be supported simultaneously. If the

immune system continues to be shifted to the Th2 immune response, it

may be necessary to rebalance it, by using immune modulators such as

Isoprinosine (Imunovir), MGN-3, Moducare or Pinextra. The goal is to

restore the immune system's ability to respond either with a Th1 or

a Th2 response, whichever is needed to combat the threat. There

have been reports that cimetidine (Tagamet) is effective in enabling

the immune system to overcome suppression of Th1 (cell-mediated)

immunity by blocking the histamine H2 receptors on cells of the

immune system that the pathogens use to fool the immune system.

(Since cimetidine suppresses the production of stomach acid for

several hours, it is best taken at bedtime, on an empty stomach. It

also suppresses phase I detox for some drugs, and may have other

side effects which should be taken into account.) ProBoost thymic

protein A (available from www.immunesupport.com) may be helpful

here, too, since it promotes the production of new helper T cells by

the thymus gland. Glutamine is another substance that may help here,

because it is the main food for the lymphocytes. It is necessary to

take a large dosage to supply it to the lymphocytes, because it's

also the main food for the intestinal cells, and they have first

access to it. Some PWCs react unfavorably to glutamine (probably

because of a leaky blood-brain barrier that allows too much of it

into the brain to form glutamic acid, the main excitatory

neurotransmitter). Therefore, it is a good idea to start with a low

dosage and work up to as much as 20 grams per day if it is tolerated

well. Bulk glutamine powder is available from www.beyond-a-

century.com, and it has a sweet taste, so it isn't hard to take.

It may not be possible to restore the immune system to complete

health until the HPA axis is dealt with, as described under the

neuroendocrine system in the next section, because cortisol and DHEA

are important to the operation of the immune system.

As part of the immune system balancing, it's also necessary to deal

with allergies, because they will tend to exhaust the immune system

and keep it shifted to Th2. It's important to identify the

substances that produce allergic reactions or sensitivities, and to

avoid them. Detailed allergy testing should include both the RAST

test and the -ACT test. If these are not feasible for a

particular PWC, elimination of the major causes of food allergies

and sensitivities can be tried. Elimination from the diet should

extend for at least two weeks. The major causes are dairy products

and wheat.

Hopefully, the leaky gut condition has been dealt with in section 8

above, and that will have eliminated food intolerances, which also

place a load on the immune system.

Another approach that has helped to improve the immune system

function in some PWCs is to perform skin brushing or lymphatic

massage, to help the flow of the lymph, which carries the immune

system cells back to the blood stream via the thoracic duct.

15. The Neuroendocrine System

The neuroendocrine system is strongly impacted in many PWCs. Prior

to the onset of CFS, many PWCs were subject to long-term stress, as

discussed earlier. The body has specific responses to various kinds

of stress, but it also has nonspecific responses to stress in

general. The latter involve the hypothalamus-pituitary-adrenal axis

and the sympathetic nervous system interacting with the adrenal

medullas. Long-term stress produces long term elevations in the

secretion of cortisol by the HPA axis and epinephrine by the adrenal

medullas. This can lead to adrenal fatigue and can contribute to

the depletion of glutathione by detoxing the adrenochrome that

results from the oxidation of some of the epinephrine. After onset

of CFS, in many cases the cortisol secretion is below normal and/or

has lost its proper circadian variation, and this appears to result

from problems with the hypothalamus or higher brain centers. The

mechanism for this is not yet understood, but it may result from the

effects of long-term cortisol elevation.

In addition to this, there are thyroid problems in many PWCs, most

commonly hypothyroidism and Hashimoto's thyroiditis. The thyroid

produces considerable hydrogen peroxide in the course of

synthesizing its hormones, and the cells are normally protected from

this by glutathione. It seems likely that the glutathione depletion

that occurs in CFS may be responsible for damage to the thyroid

gland.

Furthermore, in female PWCs, problems with the levels of the sex

hormones are commonly found. In particular, estrogen dominance is

often a problem, especially after menopause. Even though estrogen

secretion drops considerably in menopause, progesterone secretion

may drop even more significantly, producing estrogen dominance.

This was emphasized by the late Dr. Lee.

These neuroendocrine problems are best dealt with together, because

they are interactive.

Considering first the HPA axis, it is helpful to determine the

status of this axis by means of an Adrenal Stress Index test which

is a saliva test that measures the levels of cortisol at several

times during the day, as well as the DHEA and secretory IgA levels.

This test is available from www.diagnostechs.com. Based on the

results of the test, support can be given to the adrenals if needed.

Dr. L. describes this in his book, available at

www.adrenalfatigue.com. Dr.

Corsello's book (www.corsello.com) has some helpful advice about

this, too. In supporting the adrenals, the goal is to give them a

rest by supplying an exogenous steroid for a time, together with

nutrients particularly needed by the adrenals, such as pantothenic

acid and vitamin C, but to avoid using exogenous steroids at too

high levels or for too long a time, so that the HPA axis does not

adapt to them and become dependent on them. It is wise to start

with very low doses of exogenous steroid if a PWC's HPA axis is

badly suppressed.

The status of the thyroid should be determined not by measuring only

the levels of TSH and T4, but also by measuring the level of free

T3, because many PWCs don't convert T4 to T3 very well. (This may

result from the fact that the enzymes that perform this conversion

are selenoenzymes, and selenium forms an intermetallic complex with

mercury, which is elevated in many PWCs.) In addition, it's wise to

measure the armpit temperature upon awakening for a few days to see

if it is running low, and to pay attention to other hypothyroid

symptoms, such as general tiredness, weight gain, aches and pains in

the joints and muscles, low sex drive, abdominal bloating, puffy

face, depression, muscle cramps, constipation, thickened skin, dry

and pale skin, thin or brittle fingernails, brittle hair, hair loss,

including loss of the outer parts of the eyebrows, feeling cold even

in warm temperatures, and a milky discharge from the breasts). In

CFS, it is often not easy to distinguish between hypothyroidism and

partial blockades in the metabolism, since there is considerable

overlap in symptoms. However, if there appears to be a

constellation of symptoms that are consistent with low thyroid, a

trial with thyroid hormone should be considered. In particular,

consideration should be given to Armour thyroid, because it supplies

both T3 and T4.

I suggest referring to Dr. Corsello's book (www.corsello.com) for a

discussion of balancing the female sex hormones.

16. Repairing Accumulated Damage

If all these steps have been carried out, and a PWC still hasn't

fully recovered, the reason may be that there has been damage to

the organs and tissues by pathogens, toxins and oxidizing free

radicals during the duration of the illness. There are several

approaches now being tested to repair this damage. One is injections

of growth hormone and bovine growth factors, to stimulate the

production of new cells, including those in the brain. Another is

live cell

therapy, which is done in Mexico, and another is stem cell therapy,

which is new and controversial. Further developments can be

expected in these areas.

I hope this general outline is helpful. Please bear in mind that I

am a researcher, not a licensed physician. My disclosure statement

is shown below. I request that anyone considering following this

outline read my disclosures and send me an e-mail stating that you

have read them, at richvank@.... Also, I recommend that any PWC

desiring to follow this outline first have it reviewed by a

licensed health care provider familiar with their case, and follow

it under supervision of such a provider.

A. Van Konynenburg

Disclosure Statement:

As of January 1, 2003, a new law became effective in the state

of California pertaining to the provision of complementary and

alternative health care services by non-licensed practitioners.

I do not regard myself nor advertise myself as a practitioner, nor

do I accept remuneration for providing health care services, but I

do frequently give suggestions to individuals about complementary

and alternative health care, primarily via the internet. Since I do

reside in California, and am not a licensed healthcare provider, I

want to make sure that I am operating within the spirit of this new

law. I am therefore providing the following information required by

the law:

1. I am not a licensed physician.

2. The advice and suggestions I give are alternative or

complementary to healing arts services licensed by the state of

California.

3. The services I provide are analyses of cases of chronic

syndromes and diseases, particularly chronic fatigue syndrome and

related disorders, and suggestions for dealing with them.

4. The theory upon which these services are based is

that it is possible to understand the root causes and disease

processes of chronic syndromes and diseases by the use of

biochemistry and physiology, and to deal with them by means that are

primarily orthomolecular, functional, holistic, naturopathic,

alternative, or complementary. Use is made of insights gained from

specialists in treating these disorders and from published research.

5. I have B.S., M.S., and Ph.D. degrees in Engineering and Applied

Science from the University of California--. I worked for

about 30 years in research and development in chemistry, physics,

materials science and engineering. I have no formal training in the

biological sciences or health-related fields. Since 1996 I have

been performing independent study of chronic fatigue syndrome and

related disorders. I am a member of the American Association for

Chronic Fatigue Syndrome and the Orthomolecular Health-Medicine

Society and am a subscriber to the Journal of Chronic Fatigue

Syndrome. I have attended five professional conferences

specifically on Chronic Fatigue Syndrome as of this date, as well as

several other medical conferences.

The law requires that written acknowledgment be obtained from anyone

to whom these health care services are provided that he or she has

been given the above information. Accordingly, I ask that

anyone who desires to apply this outline to a particular case to

please acknowledge that you have read the above by so stating in a

reply sent to me at richvank@.... Thank you.

Rich

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This list is intended for patients to share personal experiences

with eachother, not to give medical advice. If you are interested

in any treatment discussed here, please consult your doctor.

For Research Articles on Chronic Fatigue Syndrome, Mycoplasma,

Chlamydia and Rickettsia Infections, visit our Website at:

http://www.cfsresearch.org/

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