(Summary of Cheney tape prepared in October 2001)
By Doris Brown
I urge everyone to get a copy of Dr. Cheney's tape. There is a lot of information about the physiology of what is happening [in Chronic Fatigue Syndrome] that is fascinating, but I couldn't get it all, and there are diagrams which make it difficult to transcribe. But I will hit the highlights here. Dr. Cheney's presentation style also is good for watching but not necessarily easy for writing down, as he goes over the same concepts many times but from different levels of detail. You can get a copy of the tape for about $15 (visit http://virtualhometown.com/dfwcfids/menu.html).
Phase 1 – onset or trigger phase – you came down with something, and didn't get over it.
This is the elevated RNase L stage. RNase L fights viruses and intracellular bacteria like mycoplasma. Or it can be elevated without cause. This is why you feel crummy, like when you have the flu. Also you get TH1 suppression, and TH2 activation. Perhaps this immune dysregulation causes your infection to not resolve properly, and you move into phase 2.
Phase 2 – Classic CFS (energy, brain and pain problems)
5% don't have pain 99% have cognitive disturbance in areas of the subcortex.
Phase 3 – dynamic injury phase
You can have elements from each at any one time, but one is usually primary.
In phases 1 and 2 you have symptoms, and you feel terrible. Phase 3 he calls "dynamic dysfunction." You feel relatively 'ok,' but you can't do things or be active because you know you will suffer later. You go through the push/crash cycle enough that over time you withdraw your boundaries. But another thing that happens is the pathology of the illness knocks out the dynamic hormone response, and causes you to be "in a box." This is a lesion of the hypothalamus which downregulates HPA axis, growth hormone is deranged, DNA gene rearrangements occur.
A. Growth hormone allows you to exercise, controls hypoglycemia, helps phase IV sleep which allows you to detox at 3:00 am. Without growth hormone you lose
protein synthesis, so you can no longer heal, exercise or detoxify.
B. Cortisol is supposed to respond to stresses. So you can't work, deal with complexity, with irritable people or stress. This has the biggest effect on your capacity to work.
C. Female sex hormones go crazy. PMS, infertility, ovarian cysts, bleeding or amenorrhea may occur.
D. Anti-diuretic hormone controls your fluid balance. No dynamic response and you urinate too much, and reduce blood volume.
(Note: it is good to generally stay in your 'box,' but occasionally you should try to push past it, so you know where the boundaries are. Then you don't make them smaller and smaller unnecessarily.)
Two reasons why antibiotics might be helping PWC's besides killing bacteria like mycoplasma. One is by killing gut bacteria. In a UCLA study, they killed small bowel bacterial overgrowth and brought about major improvements in symptoms. Another is that antibiotics like erythromycin and doxycycline affect gene rearrangements. They could be modulating the illness because they are preventing gene rearrangements.
Phase 1 – high RNase L destroys human RNA. High RNase L highly affects liver function, so in phase 2 your liver is not functioning properly and it is unable to handle toxicity
Phase 2 – cellular toxicity due to xenobiotics
Phase 3 – Injury to Central Nervous System and DNA gene rearrangement (damage done to brain)
There is a lot that Cheney goes into about physical exams. Particularly interesting was: 92% of PWC's (Persons with CFIDS) have poor oxygen transport. If you breathe out and hold your breath, your body should pull oxygen out of your blood. In 70% of PWC's this doesn't happen. There is oxygen in your blood, but your body doesn't transfer it into tissues when it should. This causes fatigue, pain, and microorganisms that live in low oxygen environments to thrive (like mycoplasma, Chlamydia pneumonia).
50% of CFS patients have fingerprint destructions, and 10% have no fingerprints. Studies have shown there is an immune activation in the skin cells, and you don't make collagen properly.
-Low body temperature: Occurs in 30%
-Low systolic blood pressure: 50% are less than 100
-Orthostatic hypotension: 40%
-Hypertension is very rare (less than 2%)
Then there is a whole bunch of information about biochemistry and what exactly is going on.
Phase 1 and 2 are exactly the same things that happen in Reye's Syndrome in children, although they happen slower in CFS.
Using magnesium loading tests (which still aren't totally accurate but the best they can do) 50% of PWC's are shown to be depleted, and 50% of those patients cannot be repaired with any amount of magnesium you give them. So magnesium is recommended even if tests show that the levels are 'ok.'
Here are some other problems:
-Oxygen transport is screwed up
-Mitochondrial function is screwed up
-Xenobiotic Poisoning (from gut, root canals, jaw, environment)
-Heavy Metals (especially mercury which steals the Selenium binding site and knocks out mitochondrial function)
-Growth hormone deficiency, by affecting protein synthesis
-DNA Gene rearrangement
-Discusses mitochondria and cellular energy
Note: The energy deficit in CFS may be a defense mechanism. If toxins are not broken down correctly, the body will shut down energy production to
protect you from death.
-Mitochondrial dysfunction is why exercise makes you worse
-Studies show low B12 levels and high homocysteine levels in the brain, even though not in the blood.
-Kutapressin inhibits all known human herpes viruses in a test tube.
Phase 1: high RNase L and TH2, coagulation
* Anti-microbial therapy
* Immune modulation (Th2-Th1 shift)
* Anticoagulant therapy (Berg's SFM model)
Isoprinisine (from Europe) is the best for intracellular immunity
Phase 2: xenobiotic toxicity phase
* Attenuate source (gut, teeth/jaw bone, environmental)
* High dose B12
* Whey Protein
* Growth Hormone (GH) is an excellent detoxifier of the liver.
Dose amounts are very important, as GH can over-mobilize toxins. Starting slow is best.
Phase 3: Hypothalamic injury/dynamic hormone response lost/DNA changes
* Growth Hormone Stimulation
* Fetal Bovine Growth Factors (mescenchyime, Thymus)
Add one thing every 2 weeks.
Step 1: Lifestyle Adjustment
* Setting Limits (protect the body's mitochondria)
* Oligo-antigenic Diet (eliminate allergens, digestive enzyme support, betaine HCL support (acid)
* Exercise: anaerobic and rebound exercise (rebound chair). Limit aerobic exercise to tolerance.
General metabolic support:
* Blood volume (gookinaid)
* Oxygen transport (Weil Breath exercise; Diamox Long Acting 500mg twice a day – this helps oxygen transfer, manipulates acid / base balance in blood
which is off, helps pressure headaches)
* Autonomic Nervous System Regulation (rebound exercises, body work, acupressure, stress reduction, etc.)
Step 2: Neuroprotection via Threshold Potentials
The subject here was "Neuroprotection via Threshold Potentials" and is based primarily on research in Scientific American over the past 10 years. There are NMDA blockers: Parenteral Magnesium and Taurine, Histamine Blockers (Doxepin Elixir). There are Gaba Agonists: Klonopin, Neurontin, GABA, and Valerian Root.
These receptors oppose each other and create an electrical potential, a set point where your brain works optimally. The response of the brain to injury is to drop the threshold potential. This causes a number of problems such as lights are too bright, noises are too loud, people are irritating, etc. You also don't sleep well with a lower threshold potential.
On a straight line of threshold potentials, at the left side is Seizure, and at the right side is Coma. Coma is actually a very healing state (two Cheney patients went into unrelated Coma's and their CFIDS improved dramatically.) So, for many reasons, you want your threshold potential to be higher. In CFIDS people it tends to be low, and we need to raise it.
The best drug to raise your threshold potential is magnesium. This is an NMDA blocker. Also, at least 50% of people with CFS are low in magnesium in their cells (even if it measures to be ok in the blood), so you get two benefits from magnesium.
Dr. Cheney says if you come into the hospital with severe brain problems and they can't figure out what is wrong with you, they inject you with magnesium to raise the threshold potential and protect the brain until they figure out what is wrong. This is the same reason he recommends magnesium, to protect the brain in this way.
How he implements magnesium: Start with shots every day for a month. Then twice a week for a month. The patient takes tablets also the whole time. After the 2 months, the patient decides, based on how they feel with and without the shot, whether to continue. He says 70% decide to continue with daily shots, which is amazing because it is painful. However, he has added the taurine to make it a little less painful. The dose is 1/2cc magnesium sulfate 50% (which is about 250 mg), 1.5cc taurine. It is injected high on the hip, pushing in 1/2cc at time, slowly. For tablets he uses magnesium glycinate, as it is the smallest molecule and most likely to get intracellular where it is needed. Dose is 100-200mg in the morning, 200mg in the evening. Then the shot is taken at night.
Step 3: DNA Protection
* Bioflavonoid (important to take with antioxidants or they can make you worse)
* Extra vitamin E
* ALA (keep low because of mercury)
* Omega 3 and 6 oils
* Melatonin (powerful antioxidant)
Neuroprotection from CNS toxicity
* CNS xenobiotic detox: B12 hydroxycobalamin 10000mcg IM a day
* CNS homocysteine detox: P5P, Folic Acid, Trimethylglycine, L serine
Step 4: Toxic Source Attenuation
GI Tract – microbial toxicity:
* Olive leaf extract
* S Boulardi
* Organic Botanical Extracts (1 month at a time)
* Glutamine Source
* Polymicrobial probiotics without FOS, which just makes the 'bad guys' grow faster
Oral Cavity: microbial toxicity source:
* herbal tooth and gum tonic
* remove or detox root canal and cavitations
Heavy metals (metal load is different than how toxic the metal is to you.)
* amalgams (be careful removing)
* water supply
* home mold plate testing
* air duct inspections and cleaning
* electronic air duct inserts (for mold)
* Hepa/Hega air filters
* Personal VOC badges by 3M, you wear around for 2 days and measures the amount of volatile organic compound you are exposed to
* Carbon Monoxide detectors
Cheney likes chlorella tablets for mercury. Start slow and work your way up. He believes it is safer than pharmaceuticals. If you take 2 chlorella and
get sick, you probably have mercury in your system.
Step 5: Detox
* B12 shots: hydroxycobalamin start at 10000mcg/day
* MSM at 6-12g/day
* Whey at 10-20g/day
* Guaifenesis short acting, start at 300mg (Q12H, I think means twice a day?)
* Growth Hormone .2mg SQ miniquick a week
Beware that detoxification can immobilize toxins too fast. MSM is particularly troublesome that way. It is important to go slowly.
Step 6: Other novel forms of detox he touched on and said he is starting to investigate are:
* colon hydrotherapy (should be time limited)
* hydrogen peroxide/Epsom salt bath (twice a week)
* infra red light pads over lymphatic drainage sites (20-40 minutes twice a week to activate nitrous oxide enzyme)
* deep tissue massage
* infrared sauna at low temp twice a week.
Step 7: Enhancing Phase III recovery trajectory
* Growth hormone injections
* Fetal Bovine Growth factors
Teenagers get better much more than older people. Why? He believes it is due to growth hormone. A 10 year-old has 10 times the growth hormone as a 30 year-old.
Six of nine patients in a study were good-to-excellent responders. The other three were in the group that didn't get immune modulation, and they had joint pain, especially in wrists. At least three are back to work in demanding jobs.
Growth hormone (GH) must be kept at a low dose once or twice a week, or patients get worse – patients must be immune-modulated before starting Growth hormone or Growth factors.
Risks of GH: If you have cancer, it may increase the growth rates (it does in test tubes, not so clear in animal studies where sometimes the immune system improvement shrinks the tumor). He gives miniscule amounts once a week to reduce this risk. GH also can activate a virus, and make it grow faster. And once you trigger it, you can't simply turn it off by stopping the GH.
He gives 0.2mg of GH once a week. This is low enough a dose that it isn't a problem in 99% of people. Some people can take more, but it is riskier.
The more well the patient is to begin with, the better they do. GH is best for people who have gone through the worst, come back up, but are still 30-40% away from better. This treatment helps them the most.
Growth Factor (GF) seems to activate the immune system cytokines, which causes joint pain. Functional response of GH and GF are much better if you take them together. But GF is usually packaged in packages large enough for 10 doses and can only be used once. So it isn't really economically feasible.
Interesting things from Dr. Cheney's Q&A session
Q: Should high cholesterol be treated with drugs?
A: He thinks no, except in extreme risk cases, especially do not use those drugs that inhibit liver synthesis. Also, drugs that lower cholesterol also lower CoQ10, and PWC's are already low in that. INTERESTING: Your body uses cholesterol to make steroids like testosterone, aldesterone, DHEA, cortisol, estrogen, etc. So your body might make more cholesterol 'on purpose' to try to fix the fact that these levels have been screwed up.
Tests he orders:
-Elevated RNase L
-SFM (soluble fibrin monomer)
-TH2 activation, TH1 suppression
-Toxins in urine that correlate with gut bacteria
-Mercury in stool, and how respond to chlorella
-Growth Hormone (exercise test, see if it rises)
-Insulin Tolerance Test
-24-hour urine test for GH
-Cortisol response to exercise
He has kits sent to you in the mail so you can get them done cheaply, then you see him when results are in.
Q: What about Oral Thymus?
A: He has used glandulars in CFS. Thymus glandular makes sense to him. But they are derived from animals, so you have to worry about mad cow, etc.
Q: Does CFS affect aging?
A: Some of his patients look much younger than they are, others look much older than they are. The ones that learn to stay within their boundaries look younger. Ones that always break through the boundaries look very old.
Q: What about EEG Neurofeedback?
A: He has done it and he thinks it can work, but in his experience it doesn't seem to stick (hasn't seen long-lasting benefits).
© Doris Brown. Source: www.cfsresearch.org. Reprinted with permission from Doris Brown.