Dr. Cheney's Basic Treatment Plan for Chronic Fatigue Syndrome

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Dr. Cheney's Basic Treatment Plan for Chronic Fatigue Syndrome

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(http://www.prohealth.com/me-cfs/library/showarticle.cfm?id=3157 & t=CFIDS_FM)

by Carol Sieverling

October 19, 2001

 

Editor’s Note: Dr. Paul Cheney, M.D., Ph.D., is one of the world's most

recognized names in Chronic Fatigue Syndrome treatment and research. Currently

practicing in Asheville, North Carolina, he has treated more than 3,000

patients with CFS from 48 states and 15 countries. Dr. Cheney has published

numerous

articles in peer reviewed medical journals, has lectured around the world on

the subject of CFS, and is constantly pursuing research to refine his

understanding of this dysfunction and develop an experimental treatment

protocol

for addressing it. He was a founding Director of the American Association of

Chronic Fatigue Syndrome (AACFS), a professional association of scientists and

clinicians. He was chosen to chair a select panel of nationally known

clinicians to discuss treatment at the CFS Conference sponsored by the AACFS

and

Harvard Medical School in October of 1998.

 

 

The following protocol was compiled by Carol Sieverling based on published m

aterials, a transcript of an office visit in 1998, and a transcript of a 1999

conference presentation. Please note that these recommendations are indeed

generic (particularly regarding diet), and constitute a foundation that should

apply to most CFS patients. However, each individual will have symptoms that

require more specialized treatment, which is beyond the scope of this

document. Consult with your healthcare professional before beginning any

treatment

plan.

 

BASIC TREATMENT PLAN PARTS:

· Perspective

· Basic Diet Recommendations

· Exercise

· Prescription Drugs

· Supplementation: Essentials

· Appendix

 

PERSPECTIVE

 

Attitudes and beliefs about one's life and about chronic illness can be

impediments to treatment. Measuring your worth by your accomplishments can

result

in anger and loss of ego when the ability to work is taken away or

significantly reduced by CFIDS. There's an over-representation of Type A

patients in

this disease. A change in belief systems is essential: a change in orientation

from " doing " as a definition of yourself, to " being " as the definition of

yourself. And to orient from recovery to healing. People can heal although they

may not recover. And people can " be " although they do not " do. " As soon as

patients orient toward " being " and healing, interestingly, they are far better

able to " do, " and I think far better able to heal and recover. It's almost

as if once they turn away from their goal, and march off in a different

direction, they actually have a better chance of getting back to the goal they

turned away from.

 

Conversely, if they're going to " do " no matter what and recovery is their

absolute goal, I don't think they do that well. Similarly destructive beliefs

are those such as hopelessness about the possibility for improvement, or an

attitude that " my illness allows me to control others. " Acceptance of one's

illness and finding new ways to view oneself as a contributing member of

society

are critical to setting the stage for medical treatment. Two tapes are

recommended to patients: " The Power of Myth " by Joseph Campbell with Bill

Moyers,

and " Why People Don't Heal and How They Can " by Carolyn Myss. (Editor’s Note:

These tapes can be purchased from www.Amazon.com).

 

BASIC DIET RECOMMENDATIONS

 

NO SUGAR: Due to defects in utilization, it produces toxins that cause pain,

headaches and neuro-psychiatric problems. Sugar stimulates the growth of

abnormal gut microflora, especially candida. It generates a tremendous amount

of

free radicals and raises insulin levels, both very problematic. If you crave

it, try eating carbohydrates instead. If you must, eat sugar (including

fruit) with meals, never alone. Some honey and powdered fructose can be used in

cooking, as well as the herb stevia.

 

REDUCE " BAD " FAT: Limit daily intake to less than 30 grams due to a defect

in fat transport across mitochondrial membrane. Supplementation, however, of

essential fats (EFA's omega 3 and 6) is necessary.

 

NO NUTRI-SWEET: It contains the toxin methanol and can exacerbate

neurotoxicity.

 

NO RED MEAT: High in bad fat & difficult to digest, causing GI tract

symptoms & systemic symptoms such as joint pain.

 

NO CAFFEINE: or at least limit it as much as possible.

 

BE CAREFUL WITH THE FOLLOWING: Eliminate them entirely or try two, separate,

three week programs of off/on/off these foods and note if symptoms improve

in the off week.

- Dairy products (can cause GI and systemic symptoms)

- Gluten (can cause GI and systemic symptoms) It's found in wheat and oats,

and thus in cereal, bread and pasta. Gluten free products are available.

 

ELIMINATION DIET

 

The single most common antigen to which we are exposed is food proteins. If

food protein is not properly digested, it's a significant inducer of immune

activation in the gut, and it can maintain this disease indefinitely. Put

another way, as long as you eat indiscriminately, you cannot get well with

chronic fatigue syndrome. So ultimately you have to begin a process of

determining

the foods to which you are reacting, and eliminate them. Perhaps more

important is to digest the food in the first place, which I don't think

patients do

very well. They then get undigested food protein coursing through the small

bowel.

 

There are permeability issues that affect the gut. If the gut is permeable,

nothing digests completely and the undigested food particles course across

the boundary into the bloodstream and get exposed to immune cells that perceive

them as foreign bodies and trigger an allergic response and then you're off

to the races with this disease. So I think a lot of attention to elimination

diets, and improving digestion and gut epithelial function can pay huge

dividends in this patient population. I've seen people in 30 days have huge

clinical responses simply by this very simplest of moves.

(Editor’s note: Dr. Cheney uses the ALCAT test to determine food

sensitivities, most of which are temporary, and he is now using bioenergetic

testing as

well. This is also sometimes referred to as electrodermal testing.)

 

EXERCISE

 

Golden Rule:

Find the boundaries of what you can do and then stay within them. Both

trying to do too much, or pulling back and doing too little are counter

productive. Limit setting is probably the most important thing you can do.

Patients are

very susceptible to push-crash phenomena and you need to learn to stay

within certain boundaries. To the extent you do that, you will tend to do

better.

To the extent you don't, you likely will not do well.

 

Aerobic Training:

Beyond certain limits this cannot be attempted until you are much improved.

Be cautious about any aerobic exercise (any sustained activity, such as

running, walking, or swimming, designed to raise the heart rate and increase

oxygen flow throughout the body). The aerobic system is injured and reactive

oxygen species (free radicals) generated in the mitochondria by excessive

training

may not be detoxified with resulting injury which can potentially be

permanent (DNA damage). Walk, cycle or swim only as much as your body will

allow, no

more than 20 minutes, three times per week. Aerobic exercise past a certain

point can dramatically worsen this disorder.

 

Anaerobic Training:

The anaerobic pathway is largely intact in CFIDS. Weightlifting, isometrics,

and stretching can maintain muscle tone and strength and improve the

elimination of toxins formed by the pathway itself. Do low level weight lifting

with

1 to 20 pounds, using all muscle groups. Lift for 10 seconds, rest for 60

seconds - repeat for each muscle group. Do lift/rest cycles no more than 20

minutes three times per week. Sequential isometric contractions can be

substituted for weight lifting. (This can be done while lying down.) Still use

the 10

seconds on and 60 seconds off rule.

 

Rebound Exercise:

The bounce-back chair (a tall bungee cord-like contraption) is probably the

best form of exercise for CFIDS. Low level, non-vigorous bouncing for ten to

fifteen minutes every other day is best.

 

Less ill patients can add aerobic exercises between five-minute periods of

bouncing per the videotape instructions. Its advantages include correcting

dysautonmia, the dysfunction of the autonomic nervous system that underlies

many

of the symptoms in CFIDS. The Bounce Back Chair was studied by NASA to treat

astronauts returning from orbit who fainted upon standing. After six months

in orbit, you lose your autonomic nervous system capacity to stand in a

gravitational field. You simply faint and seize. If you remember these

astronauts,

when they took them out of the capsule they had to drag them out vertically

because they would faint on standing. They end up with a dysautonomic

condition similar to chronic fatigue syndrome patients.

 

NASA figured out that the best way to bring back the autonomic nerve system

was to bounce. So they put them in these bungee cord contraptions and they

just bounced them--this up and down motion essentially regulates autonomic tone

and improves the autonomic nervous system. Rebound exercise is very easy,

it's non-weight bearing, and you can add in arms, legs and abdominal motion

while bouncing, to tolerance. It also improves immune regulation by pumping

lymphatic fluid back into the blood. Lymph acts just like gamma globulin.

Finally, this exercise was shown by NASA to be 68% more efficient as an

exercise

routine than running. ( " Efficient " means maximum gain for minimum effort.) It

is

therefore ideal for people with little energy to spare. Those who do not

suffer from balance problems can achieve many of the same benefits from a

mini-trampoline.

 

PRESCRIPTION DRUGS

 

B-12 Injections (10,000 mcg/ml of hydroxycobalamin, 1cc or more daily, given

subcutaneously or intramuscularly.) This form and dosage of B-12 is a potent

detoxifier, increases energy, may assist with sleep if taken at bedtime, and

provides pain relief for some. When using B-12 as a detoxifier high doses

are needed--at least as many B-12 molecules as there are toxins. It's brain

specific. And two-thirds of CFS patients have no detectable B-12 in their

brains, even though blood levels are normal.

 

B-12 is highly compartmentalized, so levels could be normal in the blood but

absent in the brain. I believe it is absent because it is being coupled to

toxins - neurotoxins, probably xenobiotics, because B-12 couples to nitrogen.

Nitrogenous waste molecules in the brain are coupling out the B-12 as fast as

it's leaking in, and you end up with no B-12 in the brain. The British used

5 gm infusions of hydroxycobalamin to successfully detox people with cyanide

poisoning.

 

Another study documents the use of up to 26 mg a day of B-12 with great

benefits and no side effects. At these high doses hydroxycobalamin rather than

cyanocobalamin must be used to avoid the toxicity of the cyanide in the later.

To the extent that cyanocobalamin might be a good detoxifier, which it isn't,

you just trade cyanide for the toxin it removes. A few patients have reported

feeling hyper/jittery or lethargic, or experience acne and diarrhea when

taking the hydroxycobalamin. Reduce the dose if this occurs - it's pulling out

toxins too fast.

 

It's important to supplement other B vitamins moderately when taking high

dosages of B-12. This form of B-12 is available only through a compounding

pharmacy. Hydroxycobalamin is heat sensitive, so be sure to refrigerate it. See

appendix for abstracts of the three studies referred to in this paragraph.

 

Kutapressin is a broad-spectrum anti-viral. I prescribe it for those who

test positive for a reactivated virus: EBV, CMV, HHV6, etc. Benefits may not

peak until four months or longer. Daily sub-Q doses of 2cc or greater seem to

work best.

 

Klonopin (generic: clonazepam) (0.5mg): This is a long acting

benzodiazepine, and my most effective drug over the years. It can improve sleep

and reduce

NMDA receptor mediated neurotoxicity (see The CFIDS Chronicle, Summer 1995,

page 38). The injured brain fires at lower stimuli, resulting in increased

sensitivity to light and noise, as well as pain amplification. Klonopin and

magnesium raise the sensitivity threshold, blocking this brain response, and

may

be two of the most important treatments for patients. Recommended dosage is 2

or more tablets at night.

 

Paradoxically, very small doses (usually a quarter to a half a tablet in the

morning and mid-afternoon) improve cognitive function and energy. If the

daytime dose is low enough, patients will actually get a lot clearer and think

better. If the daytime dose is too high patients will become drowsy. Patients

need to adjust their dose for maximum benefit. Adjust the morning dose first,

then take the same amount mid-afternoon if needed, then take three to four

times the morning dose at bedtime. Consider doubling the dose during severe

relapses.

 

 

SUPPLEMENTATION: ESSENTIALS

 

Magnesium is extremely important. It prevents neurotoxicity (see Klonopin),

improves energy, helps sleep, and reduces muscle pain. I strongly recommend

magnesium glycinate, which is magnesium chelated to glycine, the smallest

amino acid. It has superior bioavailability and transports well across the

blood

brain barrier and into cells. Oral magnesium, especially if not in the

glycinate form, can cause diarrhea. Reduce dose if this occurs. 200 to 500 mg a

day.

 

Multi-vitamin:

A good multi-vitamin with selenium and without iron or copper is essential.

Iron and copper increase oxidative stress (free radical damage), which is a

major problem in CFIDS. Unless you test low in iron, get a multi without it.

 

Reduced L-Glutathione:

Glutathione plays a major role in the body's detoxification pathways and in

its viral repression mechanisms. It is also a very potent anti-oxidant

(counteracts free radical damage/oxidative stress/reactive oxygen species).

Most

CFIDS patients show significant glutathione deficiency. Many patients notice

improvement in headaches with this supplement. Always take it with food. The

dosage range is 500 to 800 mg. a day. Start low then increase. Use higher doses

during relapses if symptoms are improved on high doses.

 

Rare patients will not do well on glutathione and it should be stopped in

those patients.

 

Coenzyme Q10 (CoQ10) is a co-factor in mitochondrial production of ATP

(cellular energy). It is also a powerful anti-oxidant and critical in the

protection of DNA. It can influence fatigue, muscle function, and perhaps

cognition.

In terms of dose, I think the more the better, but realistically 200 mg. We

tend to use it crunched under the tongue since it's not very well absorbed,

although there are other absorbable forms that can be swallowed.

 

Lipoic Acid is a powerful anti-oxidant and helps protect the brain. It may

be one of the most important supplements, particularly for the central nervous

system. 100 to 300 mg. daily.

 

Essential Fatty Acids (EFA's) are very important in cell membrane and immune

function and intracellular regulation of the inflammatory process. They can

help regulate menses and reduce PMS. Testing reveals that most patients are

low in EFA's to begin with, and a low-fat diet places one at even greater

risk. Omega 3 EFA's are found in DEPA (marine lipid concentrate) capsules or

Flaxseed Oil Capsules. Omega 6 EFA's are found in Ultra G.L.A. (borage oil)

capsules. If in doubt, red blood cell EFA testing can determine exactly what

you

need.

 

Probiotics are essential in replacing the healthy microflora of the

intestinal tract that are killed off as the unhealthy microflora, bacteria,

parasites, yeast, etc. multiply and set up the intestinal permeability that

causes so

many systemic problems. A good product will contain acidophilus, bifidus,

bifidum, rhamnosus, etc. Around 10 billion organisms is a good daily dose.

Though important at any time, it is critical to take probiotics if you are

taking

antibiotics.

 

NOTE: Antioxidants are especially important even though you may not notice

any significant improvement in current symptoms. I believe they can prevent

permanent damage caused by free radicals (oxidative stress) and increase the

possibilities of a good recovery in the future.

 

OTHER IMPORTANT SUPPLEMENTS

 

Bioflavanoids

 

Plant bioflavonoids are very important. If you just use multi-vitamins, you

don't get much improvement in lipid peroxidation until you add in the plant

bioflavonoids, which I think act to couple, oxidize and reduce these vitamins.

Otherwise, the vitamins don't work very well. Examples of plant

bioflavonoids are proanthocyanadins, pycnogenol®, silymarin, quercetin, ginkgo

biloba,

green tea, grape seed extract, and many others. Bioflavanoids not only augment

the effects of antioxidants by recycling them to their reduced state, they

also reduce the chance of a pro-oxidant effect (oxidative stress/free radical

damage). Pycnogenol® has a particularly potent effect in the brain, and

silymarin in the liver.

 

Vitamin C: Take 2000 to 4000 mg. in addition to your multi-vitamin. Take

mega doses (10 to 20 gms) with caution: they can actually cause a glutathione

deficiency (with a resulting crash) and in some patients augment feriton

chemistry injury by iron.

 

Vitamin E: Take 400 to 800 IUs, preferably unesterified. Most patients are

deficient in E. Activated vitamin B-6 is recommended to treat the B-6

deficiency in the brain which is evident in many patients. This supplement is

also

important if you are taking the very high doses of B-12 that are recommended.

50 to 100 mg a day are recommended, in addition to the multi-vitamin.

 

Digestive Enzymes can greatly improve digestion and improve gut ecology and

function. They will also improve energy, since they assist with energy

intensive digestion, allowing more energy for other uses. One to three caps

with

each meal are recommended. Some patients respond best to animal enzymes, others

to plant enzymes. Only trial and error can determine which is best.

Betaine HCL is important to add to certain acid dependent digestive enzymes

so that they work better. Too much causes diarrhea and too little causes

reflux heartburn.

 

UNDENATURED WHEY: DETOXIFICATION & ANTIMICROBIAL BENEFITS

 

I believe that the glutathione deficiency found in virtually all patients is

the key problem, particularly over time. Nothing we've tried has

significantly increasing its functionality. The consistent low to low-normal

levels of

glutathione in whole blood, and particularly the abnormal functional markers

of glutathione (elevated lipid peroxides, elevated citrate, depressed alpha

ketogluterate) indicated that neither supplementation, injections, nor other

interventions seemed to be addressing intracellular levels, which is where 90%

of the body's glutathione is needed. The deficiency has been extremely

treatment resistant.

 

There are two major implications of glutathione deficiency: detox failure

and viral/microbial activation. Glutathione plays a major role in the

detoxification pathways of the body. This deficiency impairs the body's ability

to get

rid of toxins, whether environmental or by-products of cellular metabolism.

CFS patients slowly become toxic, storing away poisons in fatty tissues,

muscles, organs, and brain. The cellular detox failure this deficiency causes

can

make these patients canaries to their environment. Detox programs that have

been successful in other conditions can actually put some CFS patients in the

hospital if their glutathione deficiency is not first addressed.

 

Glutathione is also a powerful antiviral and antimicrobial weapon. The

glutathione deficiency not only compromises our antiviral/antimicrobial

defenses,

but it also has a potent pro-viral effect. That is, not only does glutathione

tend to act as an anti-viral, but glutathione deficiency also produces a

pro-viral effect. It can actually augment viral replication. Given the

widespread activation of viruses like EBV, CMV, and HHV6, and the activation of

microbes like mycoplasma, chlamydia pneumoniae and candida in CFIDS, finding a

way

to raise intracellular levels of glutathione has been a top priority at out

clinic. If you raise the glutathione levels you can stop the replication of

most any intracellular pathogen. We believe we have found a way to do this -

undenatured whey protein. We conducted a six month study using the first

patented bioactive whey product and discovered that it improved glutathione

functionality significantly.