April 2004
I am writing to inform you that the Cheney Clinic is re-opening on June 1, 2004.
As you may already know, I have been on medical leave relating to idiopathic cardiomyopathy resulting in a heart transplant in early October 2003. Since then I have done very well and my physicians have approved my returning to work.
With no signs of transplant rejection, now at six months out from surgery, it is anticipated I will continue to do well and can look forward to a normal life expectancy. This has been a remarkable life event for me and I feel very thankful for all the prayers and good wishes from my patients, friends, and family.
TESTIMONY BEFORE THE FDA SCIENTIFIC ADVISORY COMMITTEE
The National CFIDS Foundation
103 Aletha Rd, Needham Ma 02492
(781) 449-3535 Fax (781) 449-8606
http://www.ncf-net.org/conference/CheneyTestimony.htm
February 18, 1993 by Paul R. Cheney M.D.,Ph.D Charlotte, NC
My name is Dr. Paul Cheney. I am a general internist by training.
I was invited by the CFIDS Association, a patient group of some 30,000 members, to present the perspective of a clinician in the trenches treating chronic fatigue syndrome. It has now been over eight years since I first became conscious of this disorder as a distinct clinical entity. I watched in awe as over 200 cases appeared over a span of six months in a small community on the north shore of Lake Tahoe where I practiced in 1984. Since then I have evaluated over 2500 cases of chronic fatigue of which over 2000 cases meet the CDC case definition. ...
Dr. Paul Cheney's protocols,
from Immune Support Newsletter
Phase I you're in when:
Phase I is usually triggered by a virus.
They stimulate RNase-L, an anti-viral enzyme.
The reason it's bad is it destroys messenger RNA which disrupts protein synthesis in cells. This is vital. There are like 50,000 proteins in your body doing stuff. RNase-L stays active too long disrupting protein synthesis everywhere and eventually the liver is affected (has highest protein synthesis rate in the body) and can't detoxify the body.
Phase II:
the body is now being affected by toxins the liver can't remove or can't remove fast enough.
Phase III:
now toxins not only inhibit cell function, they invade and injure the central nervous system, doing damage to brain, spinal chord and hypothalamus. These centers regulate heartbeat, blood pressure, body chemistry, metabolism, in other words, everything. HPA axis is damaged causing hormone imbalances.
Don't panic, Cheney says damage is not permanent.
there's really a lot to this but I'm sacrificing detail to conserve neurotransmitters!
Cheney says to add a new supplement every 2 weeks to make sure everything sets well with you. If you're in really bad shape, feeling horrible all the time, this is a good idea. At least until you start feeling better.
In the first part, I have not worried about everything.
This deals with mostly drugs for immune system, depression, really bad cognitive disturbances, anxiety and mental stuff. I couldn't read (only for a minute or so at a time) but was trying to avoid any brain drugs. Plus I was not depressed even though some dumb shrink tried to convince me I was.
Treatment for Phase I deals with:
Ampligen
Anti microbial therapy
immune modulation (you want th2 to shift to th1 because activation of th1 will reduce RNase-L)
anticoagulant therapy
I had already done the anti-viral chemotherapy for hep c; pure hell but that's another post.
So you do what you have to with regards to your particular infection, anti virals or whatever. And if you have a coagulation issue with blood, you address it, you may need heparin. The supplement for too thick blood is nattokinase but I haven't tried it. I know someone who used it and it worked.
And address the possibility of parasites, or rather, take something for them, we all have them. You could do a formal cleanse and take some supplements for them. Black walnut, wormwood and cloves freshly ground is a good combination. Do for about 10 days then stop for 2 weeks and do again if necessary.
If you have liver issues, the black walnut may be too much.
Select something else or start with small doses to see if it makes you feel bad. The liver is very delicate. If you take something it doesn't like, you'll know it in a few minutes. Grapefruit seed extract (not to be confused with grapeseed extract) is a good one. It does not interfere with medication like grapefruit juice. Olive leaf is another good one. A good quality colloidal silver or a zapper are other things you can get.
I don't see any point in getting tested for parasites.
The tests are not reliable and they'll just want to give you antibiotics which you should avoid unless your life is threatened.
If you need pointers on treatment for these things above, look at his Treatment Overview for Phase I. I got rid of my virus but I believe my immune system was still out of balance. So now I'm working on shifting it back to normal. Again, there are tests but I'm assuming it's th2 overactive with RNase-L doing damage.
.. supplements for shifting th2 to th1:
- transfer factor
- deer antler velvet
- IP6 - I'm using
- colostrum
- beta glucan
- probiotics
- chlorella (also for heavy metals, esp mercury)
- noni
- neem
- DHEA
- pine bark extract is also pycnogenol (same chemicals)
- glutathione - we need a whole paragraph on this, very important
Glutathione - main body detoxifier next to growth hormone. It's vital. Supplementing with pills or IV usually doesn't work, it's very poorly absorbed. Take NAC (I'm using), maybe 250 mg 2-4 times a day. If the liver is in bad shape, this may be toxic to it, start slow. This will produce glutathione. So will undenatured whey powder, available from Immunesupport. But if you have a dairy intolerance, probably not a good idea. I tried it and sneezed the next day. If you're in really bad shape, try just a little bit first! Like 1/2 teaspoon. If you're detoxing, that's one thing. But if you sneeze or get an allergic reaction, it will just harass the immune system. Same with transfer factor which is from colostrum. It made me sneeze. Glutathione is included here but it isn't only for the th2-th1 shift, YOU HAVE TO HAVE IT TO GET BETTER.
One good thing about th2 being overactive - we don't get cancer!
The bad is that th1 is the one that gets rid of viruses which may be a problem if you have an infection.
Most of the above supplements I looked up and found myself, Cheney only mentioned 1 or 2 and a few drugs for the th2-th1 shift.
Treatment for Phase II
- detoxification
- B12
- MSM
- whey protein
- TMG and phosphatidly choline
- guaifenesin
- growth hormone
Cheney likes the hydroxycobalamin version of B12.
I can only get cyanocobalamin, the molecule is coupled with cyanide so maybe it will be toxic to some. I'm using about 5000 mcg in the butt every 3 days.
MSM - very good detoxifier.
I take 3 grams a day now. He says work up to 6-9 grams. Go slow or you'll over-detoxify. It is also effective against yeast, it melts it. Supposed to relieve pain well, too, but I don't have any so I don't know. Take alone on empty stomach, may bind with vitamins and especially minerals.
Whey protein for glutathione.
..
TMG, trimethylglycine and phosphatidyl choline.
The first is an amino acid that reduces homocysteine levels. This helps tremendously. The phosphatidyl choline is a potent liver protector and precursor to neurotransmitter acetycholine.
Guaifenesin is a drug I haven't used, he recommends for detoxification and pain..
Growth hormone, best detoxifier of all and repairs body, look at the posts for it. That'll save me a lot of writing. Can be a godsend or a ticket to hell, depending. I'm getting some and going to try it without a doctor's help. Probably a pretty stupid thing to do but I've been lucky so far. Cheney says if you do .2 mg once a week, 99.9% of people don't have a problem. Too much will crash you. Supposed to work really well with fetal bovine growth factors.
Phase III Treatment
- Growth Hormone
- Bovine Growth Factors
TREATMENT
1. Rest a lot, duh. The thing is not to crash.
Mitos need to heal and waste needs to be cleaned from the body. see #8 also
2. Food elimination diet
- don't waste time with allergy testing, too many false positives. Main food intolerances are to: wheat (it's the gluten, also in oats), dairy, soy, peanuts, corn, eggs. Quit all dairy and wheat, no cheese, yogurt, bread, pasta, basically, anything yummy. There are tons of gluten free foods in health food stores, breads and crackers and stuff but don't get a bunch of gluten-free junk food with a ton of sugar. Example to eat: rice crackers, sesame crackers, veggie soups, turkey jerky. Big health food stores have lots of bins with stuff like dried fruits, spiced nuts and trail mixes.
3. Avoid sugar and Nutrasweet, for sweetener, use stevia. No sodas.
4. Fat intake under 30 grams, avoid saturated.
Take fatty acid supplements, fish oil.
5. Avoid red meat, hard to digest.
6. Use digestive enzymes with every meal and betaine hcl with meats. If you feel too full after eating protein, you probably don't have enough stomach acid.
7. If you can exercise a little, then bounce.
I do it on my bed, my legs and arms. This is how astronauts recuperate from anti-gravity. Helps immune system by increasing flow of lymph, too.
8. Be damn careful not to crash.
What I do is lie down every once in awhile if I'm "active" and I can tell by how fatigued I feel if I have done too much and need to lie still for awhile or if I can continue in a few minutes.
9. Expand blood volume.
I use Electrolyte Stamina twice a day or you can make one: 1 cup water, 1 cup seltzer water, 1 tsp sea salt, 1/2 tsp potassium with stevia or herbal tea bag. Drink 3-4 glasses a day. Make sure blood pressure doesn't get too high.
10. Do breath holding exercise to increase oxygen transport: inhale for 4 seconds, hold breath 7 seconds, breathe out through pursed lips creating back pressure for 8 seconds. Repeat 8 times twice a day or until dizzy. Gets easier after awhile. Make take weeks to show improvement, important.
11. Any body energy work is good:
acupuncture, acupressure, massages, reflexology, chiropractor, etc. All help central nervous system.
12. Meditation.
I use a light and sound machine, also. They have programs that put me to sleep in 5 minutes. Also, DVDs are available at Amazon that you put in your computer or DVD player and stare at and listen to binaural beats. There is also a free program download of binaural beats called sbagen for the computer savvy that you can use on your pc with headphones.
13. Sleep is a must to make growth hormone.
5htp, valerian - an herb, Melatonin -sleep hormone, these and sleep formulas you can get at any health food store. If you have to, use drugs. I slept okay as soon as I used the mitochondrial stuff (later) and desmopressin anti diuretic hormone for frequent urination at night.
14. Magnesium and taurine injections are good.
The Daily Energy Enfusion powder has 200 mg of mag glycinate and I take a mineral supplement with a total daily mag intake of about 500-600 mg. Magnesium aspartate 250 mg with potassium aspartate 250 mg twice daily. Easily absorbable forms and the aspartates help the body get rid of ammonia which causes damage.
15. Cheney says vitamins without iron and copper but I take Teitelbaum's Daily Energy Enfusion powder which has them. Can't live without it. I can't do full scoop at once or it overwhelms my liver, I do 1/4 scoop 4-5 times per day.
16. Extra Vitamin c 2-4 grams a day.
Make sure you take vit C and E with bioflavanoids or they can increase oxidative stress. see #21 Also should be taken with MSM.
17. Mitochondrial fuel:
CoQ10, at least 300 mg per day (oil based form is more absorbable and more expensive), magnesium 400mg - 1000 mg per day, acetyl l carnitine 500 mg 2-4 times per day, ribose 10-15 grams per day (I only use about 5 grams per day because it can cause hypoglycemic symptoms over 10 grams) and nadh sublingual first thing in morning. These are our cell engines, this is where energy begins! They create waste just like a car engine and probably have been damaged by buildup of waste. Be very careful of hypoglycemia. Ribose and coq10 can both lower blood sugar levels and also excess nadh can build up in your system and slow down gluconeogenesis in the liver, causing hypoglycemia. If you start experiencing hypoglycemic symptoms (especially in the middle of the night), you'll have to adjust all these accordingly. Stop them and maybe add back very small doses once the hypo is under control and you feel you may benefit from them.
18. Whey protein for amino acids.
Great tasting shakes, any flavor you want. Mix with water or rice milk. Since liver is down and can't store anything, don't take whole scoop at once, split up throughout the day. Use caution if dairy intolerance, whey protein concentrate may be best.
19. Alpha Lipoic acid 100-300 mg per day. Major antioxidant.
20. Essential Fatty Acid supplements, fish oil, primrose oil, flax oil. You want Omega 3s and Omega 6s.
21. Bioflavanoids.
Quercetin (take with vit c), Sylimarin (milk thistle), green tea, gingko biloba, pycnogenol, grape seed extract.
22. B12 5000 mcg shot every 3 days or 10000 mcg once a week.
23. To reduce homocysteine:
folic acid, Pyridoxal 5 phosphate (activated enzyme of B6), TMG,
L Serine (amino acid, already in daily energy enfusion).
I take folic acid 2x per day and TMG 2x per day.
24. ...
Cardiac Insufficiency Hypothesis
http://www.cfids-cab.org/MESA/Lerner.html
3 hour streaming video, online
http://www.cfids-cab.org/MESA/CFS_Dist.htm
Dr. A. Martin Lerner holds U.S. patents for the diagnosis of ME/CFS in the chronic mononucleosis subset of this disease using 24-hour Holter monitoring. He argues that a prominent subset of the disease is a prolonged, chronic mononucleosis following infection with Epstein Barr virus (EBV), Human Cytomegalovirus (HCMV), or both, and/or possibly Human Herpes Virus 6 (HHV-6). Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction.
He has also postulated that the disease is an early dilated cardiomyopathy that in later stages might result in progressive, end-stage dilated cardiomyopathy, a type of heart failure. Dilated cardiomyopathy is sometimes viewed as "idiopathic," or "Idiopathic Dilated Cardiomyopathy" (IDC). In an editorial response titled "Microbial Persistence and Idiopathic Dilated Cardiomyopathy," Dr. Lerner has postulated that these viruses may be the etiological link.
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory that a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart. ...
VanNess JM, Snell CR, Stevens SR,
"Diminished Cardiopulmonary Capacity
During Post-Exertional Malaise,"
Journal of Chronic Fatigue Syndrome,
Vol. 14, No. 2, 2007, pp. 77-85 [PDF]
Diminished-Cardio-Cap-VanNess-2007.pdf
Myhill S, Booth NE, McLaren-Howard, J.,
"Chronic fatigue syndrome and mitochondrial dysfunction,".
Int J Clin Exp Med (2009) 2, 1-16 [PDF Format]
Myhill-2009.pdf
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