Editor’s Note: The following are a patient's (Carol Sieverling) transcribed notes from a June 2001 consultation with Dr. Paul Cheney, M.D. The treatments discussed here are specific to this patient and her particular symptoms, and should not be tried without consulting your physician first. This information is reprinted with permission from Carol Sieverling.

Introduction

I became ill with CFS in July 1993. I had several dental amalgams removed in 1996. I first saw Dr. Cheney in 4.98. I had an infected root canal yanked in 1999. The tests ordered here were based of my initial workup with Dr. Cheney, as well as current symptoms. Further information about Dr. Cheney's practice and CFS in general can be found at the following websites, among others: www.fnmedcenter.com/ccis (Dr. Cheney's site), www.virtualhometown,com/dfwcfids/medical (the very informative Dallas-Fort Worth CFS support group website), www.cfsresearch.org/cfs/cheney/

Tests

1. Immune System Activation of Coagulation (ISAC) Panel. Hemex Labs, (800) 999-CLOT, www.hemex.com. 2. Natural Killer Cell Function Assay. E.M. Papper Laboratory of Clinical Immunology and Molecular Biology, University of Miami School of Medicine, (305) 243-6288. 3. Fecal Toxics, Hair Elements. Doctors Data, (630) 377-8139, www.doctorsdata.com. 4. Cheney Lymphocyte Enumeration. AAL Reference Labs, (800) 522-2611. 5. MRS Scan: Multislice Brain Proton Magnetic Residence Spectroscopic Imaging (H MRSI) per Shungu/Cheney protocol. The Columbia Presbyterian Medical Center, New York City, Dikoma Shungu, Ph.D., (212) 305-0989. 6. Bicycle Stress Test for Growth Hormone Deficiency per Dr. Cheney protocol. Harbor-UCLA Medical Center Respiratory Physiology Lab, Dr. Sietsema, (310) 222-2345.

Discussion

The ISAC panel measure help determine hypercoagulable states. This condition may be induced by immune activation of the coagulation (IAC) system. This in turn may be a factor in CFS. See www.hemex.com/poster-cfsfm.htm ("Is CFS/FM Due to an Undefined Hypercoagulable State…"). Dr. Cheney feels it important to resolve this condition early on before other therapies, if I remember correctly. My results showed a slight activation suggesting the possibility of a fibrinolytic defect. It is possibly immune activated, as I have no family history of strokes or heart attacks. Dr. Cheney wondered if it was due to GH deficiency. I will take heparin for 90 days, which incidentally he also utilizes as an immune modulator. He also recommended turmeric, bromelain and digestive enzymes indefinitely for this condition.

The lymphocyte panel and natural killer cell assay help determine if the immune system is activated. Dr. Cheney considers it important to balance the immune system before beginning GH injections, if indicated. For very detailed discussion by Dr. Cheney about immune system activation and CFS see www.immunesupport.com/library/showarticle.cfm?ID=2911 ("Dr. Paul Cheney Discusses Th1, TH2, the Immune System and Chronic Fatigue Syndrome Part 1") and www.immunesupport.com/library/showarticle.cfm?ID=2925 ("Dr. Paul Cheney Discusses Th1, TH2, the Immune System and CFS - Part 2").

As it was, my immune system was activated but not enough to concern Dr. Cheney. There is discussion of six immune modulators he uses in the articles listed above. It also discusses how to order the Natural Killer Cell Function Assay. The fecal toxics and hair elements tests measures heavy metal loads. Subsequent chelation therapy proved problematic, indicating sensitivity to mercury. Dr. Cheney wanted to know my current load. He is excited about Metal-Free, a safer and more efficacious chelator than pharmaceuticals I had previously used. It is a microfermented green algae cell wall extract that acts as a powerful mercury chelator. Other chelators bind to mercury but lose that connection 40-60% of the time before the mercury is excreted. That creates additional exposure to, and problems from, mercury. Apparently, Metal-Free's success rate is close to 100%. See www.metal-free.com. However, it should not be used unless dental amalgams have been removed.

Liquid selenium, zinc picolinate and whey protein concentrate were also recommended for protection against further mercury-induced binding. Most CFS patients have at least a 50% reduction in GH. Dr. Cheney suspects it's more profound the longer you are ill. The standard IgF-1 test has been proven not to be a reliable measurement of GH. A bicycle stress test with hormone response is the safest and most accurate test. I recently took a bicycle stress test here locally at Harbor-UCLA and results are not in yet. [My results were borderline deficient]. They will dictate if GH therapy is indicated. He is excited about the potential of GH and growth factor therapies in repairing brain injury and in potentially increasing the benefit from other therapies.

Dr. Cheney considers the MRS scan both an important diagnostic tool and disability document. It measures potential spikes in chemicals or substances of the hypothalamus and the cerebrospinal fluid in the left ventricle of the brain. It helps document brain damage as well as brain repair, if GH therapy is subsequently undertaken.

For discussion by Dr. Cheney about GH deficiency, GH therapy and the MRS scan see www.virtualhometown.com/dfwcfids/medical/advances.html ("Growth Hormone and Bovine Growth Factors"), www.virtualhometown.com/dfwcfids/medical/new.htm ("Exciting New CFS Treatment"), www.immunesupport.com/library/showarticle.cfm?ID=2918 ("Dr. Cheney on Growth Hormone"), www.immunesupport.com/library/showarticle.cfm?ID=2924 ("Cheney on GH - Summary") and www.immunesupport.com/library/showarticle.cfm?ID=2966 ("Dr. Paul Cheney on Mitochondrial Myopathy, MRS Brain Scans and Chronic Fatigue Syndrome"). My MRS showed brain damage, not surprisingly.

Dr. Cheney spent a lot of time discussing mitochondria myopathy. Unfortunately, the audiotapes I made of the session were indecipherable. I am on shaky ground here because these comments are based solely on some of his handwritten notes and my faulty memory. Again see www.immunesupport.com/library/showarticle.cfm?ID=2966. Apparently, viruses, toxins (like mercury and arsenic), low GH and xenobiotics (internal toxins created by a dysbiotic GI tract, for example) can cause mitochondrial dysfunction. Corrective measures include addressing the problems listed above. Supplements recommended by Dr. Cheney to help resuscitate mitochondria include CoQ10, alpha lipoic acid, selenium, taurine, undenatured whey protein and ozonated oil.

Apparently, ozone is a counter-intuitive tool. I think it has a probiotic benefit only up to a certain point. I believe ozonated oil and hydrogen peroxide IV's have similar properties. But Dr. Cheney much prefers ozonated oil because you set the dose. It is dose dependant for each individual. He feels hydrogen peroxide IV's are heavy-handed. His protocol for ozonated oil is called a challenge. You ramp up the dose gradually to the maximum, being on the lookout for relapses at any time.

Dr. Cheney highly recommends undenatured whey. It addresses the glutathione deficiency that is the virtually universal in CFS patients.

This glutathione deficiency has two major implications: detox failure and viral/microbial activation. This is also dose dependent, based on what your body can tolerate. For further information about it see www.virtualhometown.com/dfwcfids/medical/whey.htm ("Dr. Cheney on Undenatured Whey").

Insomnia

Take in order [prescribed for this patient], as necessary, until insomnia is relieved: 1. Klonopin (Clonazepam): 1-2 mg/HS (bedtime). 2. Doxepin: 2 drops-1/2 cc (= 5 mg)/HS. 3. 1/2 cc Magnesium Sulfate/1 1/2 cc Taurine injection IM HS. 4. Neurontin: 300-400 mg capsules, 1-3 HS, up to 2400 mg/night. 5. GABA, 500 mg, 1-3 HS. 6. Melatonin: 1-3 mg HS.

Therapeutic Summary

1. Protect from further mercury damage:

· Liquid selenium: ½ tsp/day, swish, gargle and swallow. · Zinc picolinate: 25 mg daily. · Undenatured whey protein (Immune Pro Rx): 5-10g/day, as tolerated.

2. Antioxidants:

· CoQ10: 200 mg/day, oil-based or sublingual. · Alpha lipoic acid: 333 mg/day. · Melatonin: 1-3 mg HS. · Taurine: 2 g/day.

3. Neuroprotection:

· Klonopin: 1-2 mg/night. · Magnesium glycinates: 200-400 gm/day. · Doxepin (H2 blocker): 2-4 drops/day HS.

4. Metal-Free: 1-8 sprays/day, as tolerated, 4-5 days/week.

5. Immune Prime (ozonated oil challenge): 1-9 drops/day, as tolerated.

6. Growth Hormone: 0.2 mg IM Q/week.

Supplements

The following are supplements Dr. Cheney recommends [for this patient]:

1. Turmeric, (60), 100mg, 1 between meals 2. Bromelain, (60), 5,000 MCU, 1 between meals, 2x/day 3. CoQ10 softgel, (200), 100mg, 2 w/breakfast 4. Taurine, (100), 1,000mg, 1 between meals, 2x/day 5. Sodium Selinite Liquid, 8oz, ½ tsp daily, swish and gargle twice, swallow 6. Nutrient 950, w/o copper and iron, (180), 1-2 w/each meal 7. Zinc Picolinate, (60), 25mg, 1 between meals 8. Natural E-400, w/ 80/20 tocopherols, (100), 400IU, 1 w/breakfast 9. Immune Pro Rx, 300g, Up to 5g on empty stomach, 1-2 times/day as tolerated 10. Magnesium Glycinate Forte, (60), 2 w/meals 11. P-5-P Plus, (100), 2 w/ breakfast 12. Melatonin, sublingual, (100), 1mg, 1-3 at bedtime 13. GABA, (60), 500mg, 1-3 at bedtime 14. Alpha Lipoic Acid, (60), 100mg, Pure Encapsulations, 1 w/each meal 15. Planti-Oxidants, (60), 1 w/breakfast and dinner 16. Metal-Free, (30 ml), days 1-3: 1 spray sublingually/day, hold 3 minutes. Next 3 days: 4 sprays s.l./day. Next 3 days: 8 sprays s.l./day. Take 4-5days/week. Beware of energy relapse at any dose. Maintain tolerated dose. 17. Immune-Prime, (10 ml), day 1: 1 drop sublingually, hold 5 minutes. Day 2: 3 drops s.l. Day 3: 3 drops s.l., 2x/daily. Day 4: 3 drops s.l., 3x/day. Beware of energy relapse at any dose. Maintain tolerated dose. 18. Digestive enzymes, (90), 2 between meals, twice daily

Conclusion

I was on this new protocol four weeks when I got my best therapeutic response to date over 8 years. I believe it came from the Heparin therapy, though it was hard to tell. I started several new therapies at the same time.

Unfortunately, I lost that boost when I undertook an informal work trial with extra work around the house. I started GH injections at 0.2mg later. The first week was fine but every week after produced adverse reactions in the form of fatigue and exhaustion. This trend continued, albeit with less severe reactions, even as I reduced my dose. I got to the point where reducing it further would not have been therapeutic. I am stopping GH therapy for 1 month, per instructions from Dr. Cheney. GH can exacerbate viral infections but apparently at doses over 0.2mg. But Dr. Cheney didn't think my labs indicated any viral infections at the time. I believe I am on the right track to clear out the heavy metals and support the liver. I hope that will help resuscitate the mitochondria somewhere down the road.

Dr. Cheney's discussion of what he considers to be the 3 phases of CFS at www.virtualhometown.com/dfwcfids/medivel/phases.html ("The Three Phases of CFS: Dr. Paul Cheney's Theory") may also be of interest. There are other articles at these web sites by Dr. Cheney and others about the different aspects of, and therapies for, CFS.

Note from Carol Sieverling: PLEASE NOTE THAT THE TREATMENTS SUGGESTED HERE WERE BASED UPON [MY] CONDITION AND MAY NOT BE GOOD FOR YOU.