(Chris continues his overview of seeing Dr. Paul Cheney to treat his case of Chronic Fatigue Syndrome. See Part I here)
I have a confession to make – I am treating myself.
I just finished listening/reading Dr. Horowitz’s book, “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” in which he discusses MSIDS – Multiple Systemic Infectious Disease Syndrome. I learned from that book that we all deserve a doctor that tries to diagnose our health problems and who wants to reduce his patients suffering. I learned some various other things from his book that could also be useful, especially if you suspect you have Lyme disease.
My current host of doctors include Dr. Rey, who is a member of Dr. Klimas’ clinic at Nova Southeastern University, and Dr. Paul Cheney. I feel they are very narrowly focused. Therefore, I am trying to treat myself making use of each of their different perspectives in the hopes that the combination of treatments will prove to be the catalyst that reduces and preferably eliminates my relentless fatigue.
The following paragraphs summarize Dr. Cheney’s first line of treatment for all of his Chronic Fatigue Syndrome patients. I believe Dr. Cheney wants to help his patients; the problem is the high cost, although he has been looking at ways to bring down the cost of some of his current protocols.
For example, when I first went to see him, his recommendation based on Dr. Ritchie Shoemaker was to use EDTA and Argentyn 23 along with 4 squirts of VIP for a total of about $400/month. Now unless, you have sinusitis issues, you can skip the EDTA and Argentyn 23 and use 1/10 of a cc of VIP 4 to 6 times a day. This has reduced the cost to $100/month with potentially the same efficacy.
Here I will detail the current list of treatment protocols that he is recommending to patients. Where applicable, I try to provide costs.
Treatment Group One – Lifestyle
- Boundary Setting: Learn to say no. Don’t push and overdo. Carefully manage your energy envelope.
- Stress Management: Meditation is very good for trying to balance the sympathetic and para-sympathetic nervous systems.
- Exercise: Walking is good. Vertical hydrotherapy – standing in water neck deep for 40 minutes 2x a week – should help. Supposedly 60 minutes is too long. Pilates is good and yields 30% more cardiac output while horizontal.
Diet – Modified elimination diet closely resembling Mediterranean diet. He tested various waters’ effects on IVRT and found the best brands to be Iceland Springs, Fiji, or Evian. Smart Water is OK. Plus Eliminate Bread (gluten)/ Eliminate Dairy (casein) /No GMO corn /No tap water – drink bottled water as listed above or buy a life ionizer water filter / No tropical fruit – temperate fruit (apples, pears, and berries are OK) / Eat lots of slightly cooked multi-colored vegetables / Meat – grass fed or bison, chicken, fish OK / Sugar – can be from Vermont Maple Syrup, local Honey, or CVS Glucose tablets / Probiotics
- The Life Ionizer Water Filter – you can buy the medium model and not the high end. The prices start at $2000. Set the alkalization to 8.5 and to that add fulvic acids called The GIFT from motherearthlabs.com. The GIFT is Naturally Containing ALL the 10 Organic Vitamins, 74+ Organic, Ionic Minerals, 18 Amino Acids, and Phytonutrients our Bodies Need.
- EMF – Electromagnetic Forces – Avoid by sleeping in a Faraday cage. A Faraday cage or Faraday shield is an enclosure formed by conducting material or by a mesh of such material that protect you from EMF and Microwaves. Such an enclosure blocks external static and non-static electric fields by channeling electricity through the mesh. EMFs are especially dangerous in the GigaHertz range which are primarily found in Smart Electric meters and cordless phones. He recommends removing cordless phones, sleeping in a Faraday cage – netting over the bed, and shutting off the power in your bedroom through the circuit breaker. Recent studies suggest that EMFs causes mold to multiply faster and become more toxic.
To contain costs, I have not bought the $2000 Life Water Ionizer. However, I am looking into other alternatives that are cheaper. Also, I am on the fence about the hassle associated with the EMF management.
Treatment Group Two – Supplements and Rx
Dr. Cheney recently noted that hydroxyB-12 was voted the single best treatment for CFS in a large survey of CFS cases (> 1000). Neither cyanoB-12 nor methylB-12 have the properties of hydroxyB-12 as far as detoxification and redox control and cyanoB-12 cannot be used at high dose as it carries cyanide.
It is also the form of B-12 used in the famous study done by Dr. Newbold, a NYC psychiatrist, that demonstrated neuropsychiatric benefits at high doses (60 mg per day SQ/IM) over a six-month period. Newbold’s late 1990’s study showed 60mg of daily HB12 helped with a variety of mental illnesses.
The benefits Dr. Newbold saw were impressive and led him to speculate that B-12 plays a central role in all psychiatric diseases regardless of type (as well as brain trauma). B-12 also supports the methylation cycle, a significant portion of which is controlled by the redox state of the cell. Dr. Cheney believes proper methylation is key to good brain functioning and sleep.
Hydroxy-B12 is the only form of B-12 that can control redox via its binding to nitric oxide (NO). (The term redox state is often used to describe the balance of GSH/GSSG, NAD+/NADH and NADP+/NADPH. It also includes processes involving free radicals). When hydroxyl-B12 binds to NO it eliminates the beginning of the NO-ONOO cycle which Martin Pall believes occurs in ME/CFS. NO binding in the presence of elevated superoxide prevents the formation of peroxynitrite (ONOO) – allegedly the most dangerous of all free radicals. It also binds to CN (Cyanide): hydroxyB-12 is the treatment of choice for cyanide poisoning. HydroxyB-12 binds the nitrogen residues of toxins in the blood and carries them out in the urine and skin.
Cheney believes that redox control may be dose-dependent in the same way that treating cyanide poisoning is. Too little hydroxylB12 and you die of cyanide poisoning. This reflects Dr. Cheney’s belief that the importance of B12 in ME/CFS has nothing to do with B-12 blood levels (aka nutrition) and everything to do with scavenging toxins (i.e.. free radicals).
Just as you would never measure B-12 blood levels before using it to counteract cyanide poisoning, he would never measure B-12 blood levels before using it to affect free radicals. HydroxyB-12 is being used to affect the redox state and therefore the methylation cycle; it has nothing to do with B-12 levels.
Dr. Cheney’s B-12 Protocol
- Start with 15 mg injection 4x day intramuscularly.
- Then reduce to 15mg 2x a day to see if you get the same benefit.
- You can reduce all the way to 10mg a day, but stay at that level.
- Patients vary greatly as to their ideal dose of hydroxyB-12 and how often (once a day up to four times per day) and whether best in AM or best in PM or whether both AM and PM. They are free to experiment with dose and frequency and AM and PM and both AM and PM.
- The drug must be refrigerated and kept out of the light.
- College Pharmacy and Wellness Pharmacy both ship hydroxyB-12 on ice. They sell preserved and unpreserved hydroxyB-12. The best price for preserved hydroxyB-12 was College Pharmacy at 10cc’s for $55 and 30cc’s for $118.42 at 30 mg/cc. Wellness Pharmacy was significantly (60%) higher at $87.50 for 10cc’s of preserved hydroxyB-12. Based on the starting recommendation, this concentration would be four 0.5 cc shots of hydroxyB12 daily.
Klonopin is a poor sedative. It’s also the only benzodiazepine allowed for children because it’s not addictive. However, it can be habituating and he has seen problems getting off the drug with his patients who take more than 2.0 mg.
Due to a receptor in the mitochondria that Klonopin binds to, Klonopin can be energizing, and some people benefit from a low dose during the day.
Some of his patients have found a big difference between the brand name Klonopin and the generic Clonazepam. The brand name Klonopin, however, may no longer be available. There are unconfirmed rumors that Roche has sold its brand name Klonopin to a generic company. This would mean there is no brand name Klonopin anymore and may explain the sudden inability to get Klonopin from pharmacies..
Generics are worrisome for reasons Dr. Cheney suspects have to do with the unlabeled excipients in them that are transported into the brain, as well as reductions in the amount of the drug itself in each tablet.
The best historical Klonopin generic (clonazepam) is by Teva Pharmaceutical Industries Ltd., an Israeli company with worldwide manufacturing and distribution facilities (including the US).
Dr. Cheney’s usual prescription is to take 1 mg (two 0.5mg tablets) at bedtime and 0.25 mg (1/2 tablet) during the day.
Magnesium (Mg) and Taurine
Dr. Cheney has found that his ME/CFS patients are universally depleted in intracellular magnesium. Because the magnesium depletions are intracellular the depletions are not reflected in blood serum tests. He believes low intracellular magnesium contributes to poor sleep and increased pain and anxiety. It also increases ‘cardiac irritability’ and causes irregular heart rates and cardiac output. Magnesium is important in hundreds of enzymatic reactions that occur in the body.
Magnesium pills, however, will not work. Injectable magnesium partially corrects the intracellular magnesium deficiency, but only for up to 4-6 hours maximum. Magnesium cream (by Our Kids or Kirkman Labs) or SL magnesium spray will work but for shorter periods.
He believes injectable (subcutaneous) magnesium therapy is an essential part of treating any CFS patient. Magnesium cream and spray can be substituted for those not able or willing to self-inject.
He recommends 0.1 to 0.2 cc of each mixed together injected subcutaneously once or twice daily or even up to 4 times per day. Taurine at 50 mg/cc reduces the pain of the magnesium shot and prolongs the effect of magnesium.
Some patients prefer magnesium chloride at 200 mg/cc (which can be more sedating) but most prefer magnesium sulfate at 500 mg/cc. The volumes used are the same (0.1 to 0.2 cc). Some patients are not able to tolerate sulfate because sulfate resembles oxygen and just as CFS patients are intolerant of oxygen, some patients are intolerant of sulfate. Inject 0.1 cc Mg with 0.1cc Taurine 2x a day
- Magnesium cream or spray applied 4 – 6 times a day
Doxepin is a very powerful antihistamine and in higher doses is used to treat depression. It is also an immune modulator. It works synergistically with Klonopin to help you stay asleep throughout the night.
Recommended dosage is 1 to 4 drops of Doxepin liquid at a concentration of 10 mg/cc – (3 drops = 1 mg)
Dr. Cheney considers Inosine equivalent to but cheaper than Isoprinosine. It works by increasing uric acid, which is the body’s most potent extracellular scavenger. However, too much uric acid can lead to gout. He recommends inosine based on your uric acid level. The lower your uric acid level, the more inosine should be taken.
a. If uric acid is < 2, then 500mg 3x a day
b. If uric acid is > 2 but < 4, then 500mg 2x a day
c. If uric acid is > 4 but < 6, then 500mg x 1 a day
d. If near 6, take 2x a day for 10 days if you have flu or cold
I am not following his protocol completely here. I tried the higher dose B12 and did not notice a difference, so I am currently taking 10 mg a day. I am taking slightly less Klonopin than recommended, but I find taking it during the day at the low dosage to be helpful. Instead of Doxepin, I am sticking with my existing sleep drugs of 100 mg Trazodone and 10 mg Nortriptylene.
I was weaning off the Nortriptylene and lowering the dosage of Trazodone when Dr. Rey wanted me to increase LDN (low dose naltrexone) from 2.0 mg to 3.0 mg, but it keeps screwing with my sleep. I seem to be one of the few people that does not get along well with LDN. Also, my uric acid levels were 5.6, and I took Isoprinosine (more expensive Inosine) for 3 years with no benefits, so I am not taking Inosine. Dr. Rey believes that using the Isoprinosine before using LDN (her current recommendations) could have led to some of my auto-immune issues.
Treatment Group Three – Cell Signaling Factors
Cheney uses cell-signaling factors (CSFs) similar to those used in “live cell” therapy that’s been practiced in Europe for many years. Cheney explained how he felt that CSFs worked in CFS and he demonstrated this with a study that he has done. This study was performed to investigate functional, not symptom, improvement. It was in two parts and the second part, using CSFs, showed a significant uptick in patient functionality. Improvement occurred within ninety days. 75% of the patients functionally improved and their oxygen toxicity improved. Non-responders with oxygen toxicity did not improve. Improvement in responders was sustained.
He ran through a set of permutations of the various CSFs, measuring for energy responsiveness on his “Echo terrain maps”. He finds that the adrenal, thymus, and liver CSFs create the most “backflash”, i.e., loss of energy, and that the pancreas, brain, and heart CSFs bring the most energetic response.
He has created “Echo terrain maps” to determine energy response to the use of these agents. He sees the same thing without exception. A hundred percent of his patients display oxygen toxicity. A hundred percent of his patients’ energy response drops with adrenal and thymus CSFs. All his patients’ energy response goes up on heart (most responsive) and brain and bison liver CSF. These CSFs contain small peptides that interact with the organ systems via the G protein-coupled receptors (GPCR).
He recommends two types of CSFs: catabolic – energy producing (i.e., Bison Heart) – and anabolic to promote healing by mimicking conditions in the womb. These are made from porcine fetus and contain stem cells. He calls them Mesenchymal Trophic Factors (MTFs). Supposedly, the MTF can cause severe sedation and needs to be applied in very small amounts away from the heart.
- Catabolic CSF – 1 to 2 drops in the AM
- Anabolic MTF – 1 to 2 drops on the foot at sundown. If unable to tolerate decrease to 2x a week and slowly work up to daily
These are expensive, and you buy them from Dr. Cheney’s office. They cost $400+ for 2 small containers, but they seem to be enough for about 3 months at the dosage.
Treatment Group Four – Vasoactive Intestinal Peptide (VIP)
This part of Dr. Cheney’s new line of treatments is based on the work of Dr. Ritchie Shoemaker. The bottom line is that Dr. Cheney believes vasoactive intestinal peptides (VIPs) increase cardiac output, and therefore energy. As VIP is a potent pulmonary vasodilator, it promotes forward blood flow and stops flow reversal – which Dr. Cheney commonly finds in his patients.
When I was treated with VIP my cardiac output went from 2.5 (heart attack victim level) to 3.1 (normal). This effect is initially transient, lasting 20-40 minutes, but becomes permanent over a time frame of 12 months or more. The transient response suggests that, while doses can be small, frequency may need to be high (4-6 times per day) to shorten the time to a more permanent effect.
Some of his patients report improvement in sleep, cognition and energy. Dr. Cheney has found that patients with the biggest cognitive benefits are those with low cerebral blood flows as measured by his 3D Doppler imaging machine. Non-responders generally have had large mold exposures (as noted by Ritchie Shoemaker). One of my concerns is that the mold in my house might not allow me to derive any benefit. The question is whether my mold exposure would be considered large or not, as virtually all homes have the potential for harboring some mold, and mold spores are everywhere.
Current recommended dosage is 1/10 cc 4 to 6 times a day. I fill a 0.3 CC/ML needle and just squirt some in my mouth every 2 hours.
If you are considering looking into treatment with VIP, then get your VIP levels checked at ARUP Labs.
More information on VIP
- It’s an 28 Amino Acid Peptide.
- It’s a member of the Glucagon/Secretin Superfamily.
- It’s similar to Growth Hormone Releasing Hormone.
- It’s produced in the gut, pancreas, and hypothalamus.
- VIP receptors (GPCR) are found in CNV, liver, lung, intestine, T-lymphocyte, heart, adipose tissue, kidney, skeletal muscle, testis, stomach.
- It’s responsible for circadian rhythm.
- It increases intestinal motility, pancreatic secretion, and biliary secretion (this may be one of the reasons Cheney believes he sees reduced biliary secretion ejection fractions in the gall bladder in almost every patient), stomach pepsin secretion, it inhibits stomach acid, and it increases chronotropism and inotropism in the heart (Rx chronic heart failure?)
- It’s a potent pulmonary vasodilator.
And Now for Some Bonus Material: an email from Dr. Cheney on follow-up of an existing patient discussing the treatments and benefits to her.
I recently had a one year follow-up on a 67 yo disabled former school counselor on nasal VIP four times per day for a year. She has been in the practice for one year. She is one of a handful of patients with a full one-year follow-up including echo on full doses of VIP.
She reports that she is doing much better and attributes this to three primary interventions.
- VIP which helped her sleep, digestion, energy and stamina and helped her gain weight from a BMI of 17 (very low) to 19.7 (near perfect).
- B-12 shots SQ at 6 mg per day best given in daytime. More than 6 mg made her irritable and HS dosing hurt her sleep but otherwise helped her energy and cognition if given in daytime.
- Magnesium/Taurine injections at 0.2 cc each given daily which helped her muscle pain and sleep.
On echo, her 2-D cardiac output had risen 20% (comparable 2-D to 2-D at one year out) and her TRmaxPG had fallen 18% (also comparable) compared to her visit a year ago. The fall in TRmaxPG which is predicted for VIP over time means she can get more blood across to the left heart and that will increase her output and improve her clinical status. Another benefit of the drop in TRmaxPG is lower hepatic vein refluxing which we also observed at one year out comparisons. Lower hepatic reflux means better liver/gut function and also better brain function.
In trying to discern why she responded so well I made the following observations:
- Her urine for mycotoxins showed almost no significant mycotoxicity and Shoemaker predicts success for VIP if there is little or no mold exposure.
- Her cerebral blood flow was low at 700 cc’s per minute (normal 800-1600 cc’s/min) done at this visit and likely higher than her first visit for which we do not have data but likely much lower a year ago.
It is becoming my impression that those patients with low cerebral blood flow respond the best to VIP and those that have no significant mycotoxicity also respond the best though this can be more variable.
Health Rising is a patient run site that provides information on a wide variety of possible treatments for ME/CFS or FM. It does not endorse any protocols or health treatments that appear on this site. Please confer with your physician before making any changes to your treatment plan.
Find good doctors, check out recovery stories, review treatments and get help in the Health Rising ME/CFS, FM and Chronic Pain Forums here