(Chris continues his overview of seeing Dr. Paul Cheney to treat his case of Chronic Fatigue Syndrome. See Part I below.)
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.
Chris is not relying one practitioner…
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 (ME/CFS) 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.
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Dr. Cheney recommends a Mediterranean type diet for ME/CFS
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.
My protocol
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
Hydroxocobalamin (HB12)
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.
B-12 plays a major role in Dr. Cheney’s protocol
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
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.
Klonopin is another important aspect of Dr. Cheney’s protocol. Patients taking above 2 mgs/day may have trouble getting off the drug.
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 should be injected or used in a cream…Pills will not work
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 elixir
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)
Inosine
Dr. Cheney uses inosine instead of isoprinosine – and uses to scavenge free radicals
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
My Protocol
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.
Dr. Cheney favors bison heart cell signaling factors in ME/CFS
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.
Dear Patients,
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.
Take your LDN in the morning. It takes a few weeks to get used to it, but it won’t affect your sleep.
Thanks.
LDN caused severe depression with me. Not a good thing for me either.
Issie
got tired of reading and gave up half way through – but magnesium can readily be absorbed through the skin. Those not prepared to self-inject can buy large bags of magnesium sulphate crystals. Dissolve 500gm in a warm, not hot, bath then saok for 15 minutes and pat dry, not rub.
If able to swim in the sea or lie in the shallows you’ll absorb magnesium from sea water.
Ideal before bed for helping sleep.
Good idea – thanks Tatt…
I understand. I wanted to provide detail so those who were interested had as much information as possible. Also, I knew it would be an issue, so I only covered the first part of his recommendations.
Epsom salt is also magnesium.
If you are treating for Lyme or other types of protozoa, bacteria or virus that live in a bio-film —-magnesium makes a bio-film stronger and harder to breakdown to get to the pathogen. Dr. Fry realizes that many may test low on magnesium – but feels it is being used to protect the invaders —we don’t want. When we get rid of some of these – he feels that our magnesium levels will balance out. I stopped my magnesium about a year ago and am so much better. A diet change of whole food, vegan and low fat has also helped.
Issie
Hi Issie,
I was just introduced to a book on treating autism that uses diet as well as CD – chlorine dioxide that I have started looking into. The reason I bring it up, it is a totally different way to look at treating the Lyme or other types of protozoa, bacteria or virus and I think I remember reading a section where it discusses what supplements and foods allow certain of these organisms to thrive. Anyway, you can learn more here
https://www.bulletproofexec.com/78-curing-autism-with-kerri-rivera-podcast/
Interesting. For me diet has made a huge difference. Listening to this video makes me think of all the POTS people using saline infusions. Could that be helping with the pathogens? Maybe???? I personally have to be careful with salt as it is very hard on your kidneys and I was in third stage chronic kidney disease. My diet and protocol for the Protozoa and treatment for mast cell (MCAS) issues has helped me. My CKD has gotten so much better and I’m now in stage one. That usually doesn’t happen, but did for me. There are times now that even with prolonged standing, my heart rate doesn’t qualify me for POTS. (Other times, it’s still there. Especially when under stress or getting too warm.) So I have to be very careful with salt. I’m also Hyperadrenic POTS and have higher blood pressures. We still have the orthostatic drops and the feelings of going to faint, but it usually starts from higher pressures and may drop down into a more normal range. It’s a different subset type. We tend to have higher NE levels with standing. The traditional POTS treatments are not a good choice for me.
You mentioned a book, what is the title of it?
Issie
Healing the Symptoms Known as Autism – Kerri Riviera
Am I missing something or is it brain fog…. I saw nothing that dealt with treating pain
(Be it body, neuropathy, migraine etc.)
Also some of us require oxygen therapy 24/7…so I am not sure how his comments on oxygen toxicity apply to us?
I do wish his patients all the best +sincerely hope they obtain relief.
Hi,
Two comments. We did not discuss pain much as it is not one of my primary issues, so he may have additional feedback. However, LDN is supposed to be helpful for pain. With regard to his theories and research based on his 3D echo evaluation, he finds Oxygen is toxic to his patients as it lowers cardiac output based on IVRT (see my first blog). Also, I had a friend who was bed-ridden with CFS and terrible pain for years – she went on an alkaline diet (See the book The pH Miracle: Balance Your Diet, Reclaim Your Health) Over the course of a year, she was able to regain her health and get off of her pain medication similar to Dr. Terry Wahl. So, miracles are still possible for some people.
I wish you the best and echo your sentiments about obtaining relief
Interesting – I talked to a young researcher at the IACFS/ME Conference who thought the acid/alkaline balance was an important part of ME/CFS in ways too technical for me to understand.
Just got this rather lengthy email from Cheney about things to use for pain
I have had two patients in the past several weeks that have commented on various aspects of the successful control of pain which typically but not exclusively involves inflammation within tissues. The inflammatory response is quite painful but especially in vulnerable tissue such as articular (joints) or peri-articular (tendons and sinew) tissues and in the lining surfaces of the brain (meninges) which can cause severe headaches. Muscles can also be painful but I have found that muscle pain in CFS is more often either ischemic pain (lack of blood supply linked to low cardiac output which is nearly universal in CFS) or due to a disruption of pain processing by nerves of the peripheral and/or central nervous system.
One of the best ways to deal with nerve related pain processing are magnesium injections, creams or sub-lingual forms of magnesium. Magnesium is a natural pain reliever from nerve related pain as it instantly raises the threshold for pain processing in the nerves of both the central and peripheral nervous systems. Other potential nerve related pain relief includes Low Dose Naltrexone (LDN) as it can trick the body into making endorphins (natural pain relievers) by actually blocking the endorphin receptors which is counter intuitive. The body may respond to blocks of the endorphin receptor by making much more endorphins and if this is the response, then patients will improve. If the body does not respond in this manner then LDN will make you much worse. Therefore, LDN can be tricky to use and needs to be started low (1.5 mg) and slowly raise the dose to no more than 4.5 mg in most patients, typically given at night. Interestingly, endorphins also block the neurotoxic effects of inflammatory cytokines so endorphins have dual influences on pain relief, especially in the brain. There are other approaches to pain relief in the brain and involves agonizing the GABA receptors though I favor magnesium and LDN as the cheapest and best methods for centrally mediated pain. Improving sleep is also critical to reduce central pain as well as inflammatory pain. Klonopin and low dose Doxepin are the best choices for sleep control though there are other choices if these do not work.
As for inflammatory pain which is very common in CFS, I like the APC (antigen processing cell) modifiers which are the controllers of the inflammatory response. One of these include Kirkman’s Colostrum which is much like gamma globulin but the central player for colostrum is Gc protein which turns off APC cytokine production. Another player that turns off inflammatory cytokine are systemic enzymes such as Wobenzyme-N by Garden of Life (up to 12 tablets per day, divided) (http://www.gardenoflife.com/Products-for-Life/Immunity-Support/Wobenzym-N.aspx) which was first developed in Germany with many clinical studies showing successful reduction in inflammatory pain. Systemic proteolytic enzymes destroy inflammatory cytokines and reduce inflammation. Endogenous proteolytic enzyme production is likely reduced in CFS perhaps because it takes energy to produce these enzymes and the body simply does not have enough energy so this is sacrificed early on as is the GI tract in general which is energetically expensive. The next level of attacking inflammatory pain is to block NF Kappa B which mediates the effects of cytokines within the cell. NK Kappa B inhibitors include but are not limited to Artemisinins such as Artesunate (aka Hepasunate) and/or Wormwood Elixir (MediHerb Brand). Artesunate and presumably Wormwood as well have potent anti-herpes virus effects. I like Wormwood Elixir at one cap in water swish and spit for certain kinds of inflammatory headaches given once to three times per day. I like Artesunate with or without Inosine for signs of a herpes virus induced inflammatory responses given acutely PRN or chronically 5 days out of seven and 5 weeks out of six. Anatabloc is also an effective NF Kappa B inhibitor but no longer available for bio-political reasons previously posted.
The final approach to pain is to kill off the immune effector cells (B-cells and T-cells) which can be very effective in controlling an inflammatory response but dangerous over time. I do not recommend these therapies which include Rituximab and RAT-G as they are likely not a good long term solution but could be used for short periods of time in a few special cases. I myself had RAT-G administered to control my only heart transplant rejection episode in 2010 which killed all my T-cells off. It stopped my inflammatory transplant rejection in days and I never felt so good in my life as when all my T-cells were dead. Luckily, I survived and re-built my T-cell supply over the next six months. I would not recommend this approach in CFS cases. I also do not recommend steroids which also are effective inflammatory pain relievers but cause central suppression of the HPA axis over time, especially in CFS. I occasionally use low doses of Cortef for functionality but not for pain relief. NSAIDS are very dangerous if used over time as they cause heart, kidney, GI and liver problems though occasional use can be effective for pain relief. Tylenol at low doses (1-2 grams per day maximum) is safer than NSAIDS for CFS cases. Tylenol induces glutathione which is typically a good idea in CFS as long as you do not run out of glutathione which underlies Tylenol toxicity (typically at doses of 4 grams per day or more) or if combined with alcohol.
These recent two patients referred to above had very nice responses to LDN and Wobenzyme N and I wanted to expand on how these therapies work and how to use them and where they fit into a larger framework of pain control in CFS. On a final note, our new membrane therapy may also be important to prevent inflammatory pain via third spacing which is an underlying cause of inflammation as well as swelling. Defective lipid membranes cause capillary endothelial leakage which induced tissue inflammation as well as leaky gut and ISAC. Goleic Suppositories as well as probiotics in general are also anti-inflammatory. Goleic is also a powerful modifier of the APC cell including the microglial cell (the primary brain APC cell).
I always get tired when and depressed when I read any of Cheney’s protocols, they just go on and on. Well a\t least I am not being charged by the minute. LOL
I understand how it can be overwhelming and alot to read. I wanted to provide detail so those who were interested had as much information as possible. Also, I knew the length would be an issue, so I only covered the first part of his recommendations.
Chris,
I would prefer the long version. Either one chooses to involve oneself in one’s treatment, and that means study, or one leaves it up to others. There is no shortcut at this point in time.
Robert
The next blog will contain more recommendations and information – hopefully Cort and I can get it out in the next month or two.
I too reacted to Low Dose Naltrexone with heart racing that made it hard to sleep. We dropped the dose significantly and then increased it incrementally over many months, and that has made the difference for me. I truly think it has been effective in lowering inflammation and pain and improving sleep, so I’m glad another doc suggested this solution.
I think it’s particularly valuable to spread this kind of information as without it many people will give up on a drug that could really help them. Thanks!
Has he been testing for genetic mutations, and modifying his protocol as needed in light of them?
Hi,
Not that I am aware of. Basically, high levels of HB12 supports methylation.
Thanks, Chris, for another excellent report; just went over your post on clon./Cheney details from May 23, and it had just the right details useful for several docs. I love your attention to details because they provide many with a protocol when certain specialists are not available; they also dovetail with and validate so well the research many of us have been doing for years, getting us more results faster. Posters’ responses are very practical too, much appreciated. Maybe you might write an abstract summary of your experiences at the beginning of your posts and then outline all the details in an expanded narrative for those who experience print or computer fatigue? FYI, Perque makes a Hydroxy B12 sublingual, 2000 mcg, that seems to work well when combined with some type of 800 mcg. folate (never folic acid!), 200 mg. ubiquinol, and 1000 mg. GABA for brain calm, and a very small amount of lith. oro. OTC if needed. Glad for the underlying emphasis on methylation support here; I still think there is sound guidance to be found in the 23andme and Yasko tests. Very glad to see that Shoe is getting some input and validation with Cheney. The redox issue is extremely important, as is the tie-in with Dr. Pall’s work; to see all these issues and docs together in one post with the Nova NID Center mention is amazing, the first time I have seen this anywhere.
Hi,
Thanks Jeannette for the positive and constructive feedback. One of the reasons I went to Cheney (still a big financial sacrifice) was because he has been working with multiple doctors who are looking at different but similar issues and seeing how there successes can be applied to CFS (i.e. Ruggiero with Autism, Kane with Lipid Replacement Therapy). My next blog will be about these other recommendations/protocols among other things. I am trying to educate others as well as myself. The more choices we have while sometimes overwhelming means we have more things that could help us. Also, with all the variations with this illness, different people respond to different things.
Thanks so much for this! I wish I could afford Cheney
Paula, seriously, you should thank you lucky stars you can’t afford him.
Don’t believe me, but read some of the comments from ‘Part one’ of this series, and you’ll probably change your opinion.
There is simply no justification for his outrageous fees, especially due to his very low ‘success’ rate.
Paula,
My hope is that I provide you with enough information that you can try things on your own or work with your doctors on them. Honestly, from my experience and most of the things I have read – group 1 lifestyle probably has the most potential to heal you. The problem is identifying exactly what things are affecting you personally and the trying to address them systematically. What I have given you today is a baseline approach that Cheney recommends to all of his patients as opposed to patient specific recommendations. My next blog will cover a little of both.
Wishing you good health
Well most of my comment didn’t post?? Hmmm .. Anyways yes lots to learn from 23andMe gene mutation testing. Need help with affordable emf protection. Smart meters were installed here this year. Not too smart
Understand the sentiment. I think the best idea is to sleep in a Faraday cage which is essentially a silver mesh netting (aka Argenmesh, see http://www.lessemf.com/fabric.html) around your bed hung from the ceiling by hooks at two points, tent like, and all the way to the floor with a silver mesh bottom under the bed if you are in an apartment so you get complete shielding around you and under you while sleeping. The cost of Argenmesh is roughly $18 per yard at 59 ” wide or ~$18 per 15 sq ft. A rough calculation of the sq ft needed is 336 sq ft for a king size bed and a 9 ft ceiling or ~$400 for the Argenmesh. A good seamstress could sew this up in 4 hours or less and an hour to hang it from two eye hooks in the ceiling.
Geezuz! If ME doesn’t kill you Cheney’s protocol will, whether directly or indirectly by
running around to acquire and administer the ingredients
So…..have you or any group of people you know of achieved any significant and sustained improvement from using these protocols? And where may I read up on any positive testaments from some that have at least partially recovered under Cheney’s or other’s care?
After 30 years or such of recommended treatment I would think a certain amount of patients would be happy to relate their new lease on life. I’ve been scouring the web for 3 years looking for such and have come up empty.
Must agree. We see so many of these protocols and interventions etc which may help to some degree …but only in very ‘specific circumstances’ and when they don’t work then there is always a ‘reason’, or ‘out clause’ as to why it did not work. And usually another treatment to add to the list.
Considering the phenomenal number of approaches, suggestions, treatments, protocols, medicines, etc etc that are offered on line there are very scarce numbers of people crowing about their recovery via any of these methods. Occasionally there are those who try varieties of ideas and perhaps get ‘some relief’. It is hard to find the right path but all these practitioners continue to promote new protocols…naturally always expensive…strange that!
For all the years of my reading and experience it seems there are seldom streams of people jumping on line to say that a particular protocol worked and that they are healed of ME/CFS.
Call me cynical…..but…
Yes, call me cynical!
I’m with you both, I appreciate your post Chris but this scatter shot approach requires more focus, energy, and optimism than I have currently. It’s all depressing for me it only shows the lack of knowledge.
When something truly works, (for some) like rituximab, That is where research and treatment should be focused.
I just heard an interesting pain researcher. He said all sorts of pain treatments help some people with pain but no treatments work consistently for the majority of people with pain.
I think we’re in the same place with ME/CFS. Lots of things can help some people but it’s pretty rare to see them cure someone…(Not that that doesn’t happen from time to time.)
The problem of course is that you may be one of the lucky ones for whom something really works or you may spend a lot of time and money for nothing…as Carol’s blogs attest so well.
Greg,
I totally agree. I have searched consistently for twelve years now for a protocol that offers significant improvement for a significant number of CFS patients. Doctors sometimes claim this but I have yet to hear this from their patients.
There is a lot more research happening and I am thankful for those engaging in the research but it seems we are just not there yet. Patience and acceptance are the two of the best tools one can have for this condition at this time.
Tom, for what it’s worth, I know about a half dozen people who have completely recovered from ME/CFS. Two of them relapsed for a year or two, but are now back at work.
All of them, without question, used different modalities, typically combining input from M.D.’s and naturopaths, and also things that many people might consider ‘out there’, like Qi Gong (once they were stronger), or acupuncture, osteopathy, and most importantly, a supportive group of friends or family.
And none of them went to Cheney, or any doctor that charged such outrageously and unjustifiably exorbitant fees.
Greg, I’ve heard of one patient who improved about 40% via Cheney, but even he admitted a few years ago that not one of his patients had recovered.
As others commented on the first page, he really seems to be more interested in his theories vs. his patients.
And his recommendation of Klonopin has resulted in thousands of poor patients addicted (or as he would say, “habituated”) to the drug. A drug that can cause anemia and low white blood cell counts.
Since, as you say, no one has come up with a cure, the best we can do is try different things in hope that something works or at least provides some noticeable benefits. I am still not a fan of Cheney’s fees, but at least I see him trying things that are not currently being done. Yes, we are his science experiment, but he is doing his science based on trying to fix things he can show are broken by laboratory findings. He is fond of saying, if he cannot measure it, he can’t fix it. He is working with Dr Brewer and other doctors that are showing signs of success and applying those to his patients. The above commentary reflects what I said are his basic protocols. The next blog will focus on his current protocols which may help some people as in the same way Brewer is helping some people.
With regard to Klonopin, I find it helpful. All drugs can potentially have some side effects and more side effects in some people. Every drug TV commercial spends more time listing the side effects of a drug rather than the benefits.
Richie Shoemakers Protocol has helped me hands down! I’m about to start the VIP treatment at the end of the month.
Hi Chris
Thank you for this excellent and meticulous description of Cheney’s protocol. I did daily magnesium injections for a long time under doc Myhill, but stopped them because of biofilm considerations. I also did daily injectable methyl cobalamin, but have found via 23andMe it is a strong possibility hydroxy would suit me better, so am now using that via injection. Seems to work better for me.
I am a mold reactor – did the HLA test Shoemaker recommends which said I had the multi susceptible genotype – confirming years of my own observations – haven’t done his protocol though, haven’t had the oomph to Sussex it out on my own. If you are worried about the mold in your house, you may be better finding a way to get rid of it, or moving. Dealing with EMF’s was one of my biggest gains, so it was worth it for me. Even if something has an apparently minimal impact, it can still be a tipping point at the right moment.
Thanks again. Good luck.
Thanks Sian
It is good to hear positive feedback from different people – pushing me more towards getting a EMF Sleep Net. I have tried the best I can to remove the mold from my house – but you can never get it all. In Miami, I always have mold growing on my outside window sills. If its in the walls which is possible considering its a 1941 house – that remediation was going to cost me $50,000. Also, selling and moving is not an option for multiple reasons. If I could only win the lottery and build my own private bubble, so the best I can do is work with the tools I have and can find. Cheney is following Brewer on treating mold and has found all of his patients tested have mold exposure – some treatable others not. Mold remediation has helped some. The test for checking mold is $699 for the first test and $199 for follow up testing – which is why I have not done it. I will comment more on that in the next blog.
Just thought I would add that ….
Perhaps we are all susceptible to mould. Perhaps the trick is to discover why you and others particularly react. Some do not! So perhaps in essence the problem is not actually the mould…it’s just the catalyst!
Mould is part of existence in some/many forms.
Good luck on your journey to get to a well place.
I have had detoxification gene panels carried out and it is clear that I am super toxic. Two mutations. Armed with this I consulted Dr. Amy Yasko site + protocol. She recommends Adenosyl B12 for me – is there a big diff. between the hydroxy and the adenosyl B12. Also recommends elemental magnesium. Can anyone shed some light on these two products and how they differ from magnesium and B12 mentioned in article.
Thank you
Hi Chris,
I just wanted to thank you for taking the time to tell your experience(s) of your visits with Dr. Cheney. I do appreciate it.
If you do see him again however, and have a chance to ask him, I’d be curious to hear his answers to two questions:
Is he concerned at all the Klonopin is one of only two benzodiazepines that can cause anemia and low white blood cell counts?
If you mentioned you have mold in your home, does he recommend remediation (like Brewer), or suggest you throw away all your belongings and move/start over (like Shoemaker)? And why isn’t he treating that first, especially considering the fact that Brewer found mold/mycotoxins in 93% of his patients and many are getting better for the first time ever (in Brewer’s practice)?
And lastly, for you Chris: I’m curious how many people work in his clinic?
Thank you,
Michael
Cheney is following Brewer on treating mold and has found all of his patients tested have mold exposure – some treatable others not. Mold remediation has helped some. The test for checking mold is $699 for the first test and $199 for follow up testing – which is why I have not done it. I will comment more on that in the next blog.
His commentary on Klonopin is its the only benzo approved for children.
Thanks, Chris for all this great information.
I’ve had some luck with LDN. Mostly I’ve reduced the pain by following a diet very close to the one you describe. I’ve had several food tests done (ELISA and ALCAT) and I found that by eliminating certain foods I definitely have cut down on the migraines and intestinal issues as well as the pain.
I only take 0.6 mg LDN at night. Sometimes not every night because it does cause some nausea the following day. In that case I drink some ginger tea (just ginger, no other stuff added to it), which helps. Drinking 7UP or ginger ale is not helpful due to the high sugar content.
I still can’t tolerate exercise. I try yoga every now and then when I have the energy. I’m concerned about how much muscle mass I’ve lost.
I’m especially interested in the EMF protocol. Do you know anyone who tried it and found it helpful? We just got the smart meters about a year ago. I found a pendant online that I wear all the time. It helped reduce/eliminate the ringing in my ears and the constant itching.
Hi Margaret,
If you search the web, those questions should be easy to figure out. With regard to Dr. Yasko and her recommendations, I think you need to also take them with a grain of salt. Most of it is largely conjecture and she sells her own line of products to fix issues. I was on a Yahoo group discussing methylation – yasko versus Fredd – versus Rich K for over a year. Eric does a good job of summarizing much of the information here http://howirecovered.com/active-b12-therapy-faq/. If I remember correctly, I believe ADB12 stays in the system longer than methyl and hydroxy, so you have to take it less often.
I would recommend trying each and see if you notice a difference. Same thing with magnesium. I have tried ADB12, hyrdoxy, and methyl at various times and in varying combinations without noticing a significant improvement. The problem comes down to how much to take and whether to add 5-Mthf. It can get complicated so I suggest you read some from above and try some of the yahoo groups on Yasko/methylation.
EMF is not a protocol as much as creating a space without EMFs. Sian above commented that he/she has seem benefits from dealing with EMFs. Please share a link about your pendant as I am curious. Also, I enjoy fresh ginger which I mix with lemon or lime and drink hot or cold. Sometimes I add Stevia, but prefer miracle fruit.
I think the best idea is to sleep in a Faraday cage which is essentially a silver mesh netting (aka Argenmesh, see http://www.lessemf.com/fabric.html) around your bed hung from the ceiling by hooks at two points, tent like, and all the way to the floor with a silver mesh bottom under the bed if you are in an apartment so you get complete shielding around you and under you while sleeping. The cost of Argenmesh is roughly $18 per yard at 59 ” wide or ~$18 per 15 sq ft. A rough calculation of the sq ft needed is 336 sq ft for a king size bed and a 9 ft ceiling or ~$400 for the Argenmesh. A good seamstress could sew this up in 4 hours or less and an hour to hang it from two eye hooks in the ceiling.
One more thing, I would recommend looking into treating for Candida. There are some books if you want to go cheaply to help with that. Along with the try adding Kefir to your diet. That combination did wonders for my GI issues (along with the diet) – also got rid of my night sweats. Among, supplements I used where capryllic acid and pau d’arco tea.
I really appreciate your ability to share the details of your plan and the reasoning behind each step.
Thanks Natalie,
My hope is that this information will be able to help some people.
You know…I guess I don’t feel so bad now. Maybe if I get worse I will consider going through all this…the reading that is. The treatment???
It took a while and the right dose to let LDN do its job. I started low and worked up and always took it at night. I had no trouble with it great dreams in fact. I had no change in pain. Dr. Klimas told me to take it at night and in the morning 3.0 each time. It took a while but I first noticed a wonderful change in mood and then I realized I had no pain. I mean no pain. I hope I did not jinx it by talking about it. I am astounded.
I was having a lot of leg pain and Dr. Rey had said that it could be die off from who knows what. It was a different burning pain. I cannot explain it. It turns out that is a side effect of Acyclovir. It is gone too except sometime when I wake up at night. I know the FIR sauna has helped a lot to. Rich Vank told me he thought it would. I was afraid since whirlpools and regular saunas made me sick. .It worked wonders. and I either go out in this steaming Alabama heat or the sauna each day.
I did the methylation protocol of Rich with the methyl Bs. Cheney and Rich agreed to disagree on that. Dr. Klimas had read research that post menopausal women should use methyl. I was getting injections of the other after Rich was gone. I asked my GP for methyl and did not realize it was not. I know the methylation did work at least to some extent. . So in a couple weeks I will test and see what is happening.
I still take a ton of supplements….a lot of liposomal vitamin C. I am thinking of making my own, saw some people doing it on You Tube. I keep hoping I can cut down on the supplements but both Klimas and Rey say my body is chewing up. J also started making fermented vegetables. I do 6 quarts at a time, they keep for months Great to get the good bacteria in the olon going.
I am leading an almost normal life now and for the rest have become a good actress. I do not push though, if I feel tired I stay home.
This is my second round of this starting in 94. I had 10 years remission. My immune system went down and EVB and all the latent viruses came out to play again in 2010 There was some reactivation of Mono and EVB in June but feeling better. You can get out of the hole you just have to keep reading and trying things and get to a doctor that will listen. I had a lot of help from Rich and I miss him a lot..My GP here is great as well as Klimas and Rey. I won’t list all the others… too long.
So much has happened since I got sick really in 93 but the end of the year after the flu shot and a year of stress. I got through the holidays and then I was down for 5 years. Never give up and always trust your instincts.
Hi Marg,
Just curious what your viral titer levels were. Also, were you put on anti-virals? I have made my own liposomal C . Using Lecithin is a mess and it tastes terrible but it is a fairly straightforward process. I also made my own liposomal Tumeric – it tastes even worse. Can you share which FIR you used? Is the main objective to sweat. Florida summers are excellent for that. Also, what supplements are you taking? I have been going through a process of trying to figure out if my supplements are working by stopping all of them for a week and then going back on. I have not noticed any real differences, so I am toying with dosages now
Hi EveryOne,
Thank you Chris for all of that interesting information. I like to experiment so it is helpful to me.
I have found both LDN and Hepapressin combination Injections from Dr Derek Enlander in New York City to be very helpful for me. The difference between meningitis and encephalitis symptoms with every relapse about every three weeks to no longer having those symptoms and having almost no relapses for a few years now, since 2011. I am not back to “normal” but much improved. Still looking for what will increase that improvement more. All information very much appreciated!
I thought it was magnesium stearate – the supplement binder ingredient – that causes biofilms and not magnesium itself? Also, does anyone have super low Secretory IgA in their gut and were they able to fix it and how?
Hi Paula,
In November 2011, a Comprehensive Stool Analysis measured my Secretory IgA at 4.9 – well outside the reference range of 51 – 204 mg/dL. My concentration of sIgA was described as “abnormally low”.
The report stated that an increase in dietary L-glutamine can restore GI immune function by protecting the cells that synthesize sIgA. This I have done, using a Metagenics product. The only other possible intervention mentioned involved a non-pathogenic yeast called Saccharomyces boulardii – used for the treatment of acute infectious enteritis and antibiotic-associated diarrhea. This I haven’t tried.
I have not been retested, nor have I experienced any improvement in symptoms; digestive, or other. Sorry I can’t be more helpful. I’m assuming you also have “super low” sIgA. If you have any suggestions on how to increase it, please let me know. Thanks.
Karen
I only spend about $50 a month on my treatment, and am essentially pain free and high functioning. It’s a great deal financially and mentally. No prescription drugs whatsoever. I don’t even need tylenol for sleep these days. Only guaifenesin.
Jody,
May I ask what you are doing to achieve this?
From his way of measuring Oxygen’s affect on his CFS patients, it would be a big negative. However, if you are seeing benefit from it, then I would let intuition be your guide as we are all different.
The guaifenesin protocol uses guaifenesin as an unapproved fibromyalgia treatment, despite the fact that a one-year double-blind study indicates that the treatment performs no better than placebo.[8][9]
Side-effects of guaifenesin include nausea, vomiting, formation of kidney stones,[13] diarrhea, and constipation.[14] Nausea and vomiting can be reduced by taking guaifenesin with meals.[2] The risk of forming kidney stones during prolonged use can be reduced by maintaining good hydration and increasing the pH of urine. Rarely, severe allergic reactions may occur, including a rash or swelling of the lips or face, which may require urgent medical assistance. Mild dry mouth or chapped lips may also occur when taking this medication. Drinking a glass of water is recommended each time one takes guaifenesin.[15]
Guaifenesin “increases the analgesic effect of paracetamol (acetaminophen) and aspirin, increases the sedative effects of alcohol, tranquilisers, sleep-pills and total anesthetics. Guaifenesin increases the effects of medication that decrease muscle tone. Guaifenesin effects are increased by lithium and magnesium.”
I wonder if this new heart failure drug from Novartis could be of use in CFS. I’d like to hear Dr. Cheney’s take on this!
Rather than these bogus “cell signaling factors” — Lmao, give me a freaking break.
David below says they helped him. With regard to the Novartis heart drug. It seems like it will be a very expensive way to keep a few people alive longer, but not fix their health.
Was wondering about Oxygen toxicity. DOes that mean we with CFS shouldn’t use Hyperbaric Oxygen as a way to treat our fatigue?
Hi–Just curious. Is he still charging $100 per minute?
Thanks!
That,s what I charge to answer questions here. He only charges $13 a minute.
Great summary of the Cheney approach Chris. I was a patient for a while but the cost and travel was prohibitive. I found the heart cell signaling factors to be of great benefit. I also benefit greatly from Hydroxy B12 injections. I have learned a lot from Dr Cheney but also from Drs Myhill, De Meirleir and Yasko. I am also self treating, due to financial restrictions.
Thank’s
David
I completely understand. Look into these 2 books as other sources of information that I am finding helpful
The Wahls Protocol: How I Beat Progressive MS Using Paleo Principles and Functional Medicine by Terry Wahls, M.D.
Why Can’t I Get Better?: Solving the Mystery of Lyme and Chronic Disease
by Richard Horowitz
This third book is a totally different take but also might give you some things to ponder or that might be helpful
Healing the Symptoms Known as Autism
by Kerri Rivera
Any feedback on VIP treatment? Did it help with memory recall?
I was Dr. Paul Cheney’s patient. None of the above therapies were ever recommended to me. When he told me I was dying, i was so angry and funneled that anger into finding the answer for me. I am part Cherokee Indian and went to Old Fort, NC to seek the help of Chief Two Trees. He helped me recover and I had a life, but I thought there is a cure. I was willing to stay on the supplements that gave me my life back. I sought the help of Chuck Hipple L.AC in Charlotte, NC. I recovered 100%. I went back to Cheney and the only thing he told me was i would surely relapse and die. Now it is 24 years later. I practice Chinese medicine. I live, I thrive, You can too.
Hi Carolyn,
Dr Cheney was arrogant and I am sorry that he treated you that way. Can you share the things you did to cure your ME/CFS.
Hi,
I was told I was going to die. He had absolutely no feeling about that that showed on his face. I went home. I am a spiritual person. That night as I was on my way back to bed, I caught my eyes in the mirror. They were black. I could understand why my spirit could find no home in my heart. I was barren. I said, God, I am willing to do what ever it takes to get well, Just show me the way. I went to bed and didn’t think a think about my little prayer to the universe. i am part Cherokee. The next morning the phone rang and my friend, who had CFIDS too said there is a Cherokee indian medicine man in the mountains of North Carolina. I’ll pick you up at ten. It was the most amazing experience. He told me my spirit was outside my body and ready to leave. I took his creations of herbs and basically a chelation therapy of vitamins and western and Indian herbs. It took about 2 months, but I had a life. I tried to go off the supplements because I was feeling so well. I could cut down to a certain point and then the symptoms would start returning. I returned to the mirror, I was hurt and angry. I told God there must be more, show me the way. The next morning, the phone rang again and the same person told me there was an acupuncturist in town. I had sciatica at that point, but wasn’t sure I understood acupuncture so I did research prior to making an appointment. I didn’t tell him I had CFIDS. He told me. I worked with Chuck for 2 years. I took Chinese herbs daily and went to acupuncture weekly. I was fascinated. He could explain all my symptoms and how they tied together into a tapestry. (Not a pretty one for sure.) He was compassionate and honest. Sometimes he would ask If I wanted the truth or to hear what I wanted to hear. I always said the truth please. At the end of one year I went back to school. I had 4 children and a husband too. I finished my degree in Biology and then moved to San Diego to study Chinese Medicine. It has been 30 years since I saw the Indian Chief. Of course I’ve aged as we all do. I’m so blessed, I got to see my children grow up, go to college, get married, have children of their own. It was a partnership. I had to do my part, make dietary changes, start to exercise. Read John-Kabit Zen’s Catastrophic Living. There is a yoga and meditation tape in the back. It was the first exercise I could do. I started walking. One mailbox at a time till I got up to 2 miles per day. I’m lucky. There is so much. I also think there is a spiritual and psychological side to the disease. We give ourselves away, our own sustenance meant for us to others. There is so much more. Maybe I should write about it.
You have a lot of important points. Diet, spirituality, mindset are all important parts of the healing process.
He pushed klonopin and Vicodin. I know so many that became addicted.
I am sorry for those who have had that experience. He put me on Klonopin and told me that his patients were able to stop it. I have stopped it and started it multiple times as I find it helpful for sleep when my overall health worsens. I am well aware that there are people who have had lots of issues getting off benzos and pain-killers. I think he was trying to help people, but all of us are individuals. He put me on VIP and I ended up with Pancreatitis which at the time I did not know was a potential side effect of VIP. The VIP did not help at the time, but I did not have the context for it at the time only trusting in the doctors. Now that I know more and I no longer have Pancreatitis, I plan to start VIP again based on my current knowledge and as part of the larger shoemaker protocol.
You don’t mention anywhere in your articles about how and where to find this VIP liquid product. Do you need a prescription for it? Can one find it in pill form? Can you update everyone on how you are doing now as these articles are from 2014. Thanks.
Hi Maria,
There is a lot to report since then and It could all be multiple new articles. VIP at the time did not help me and might have given me pancreatitis. Since then I have learned alot more about the treatment and when it works. Anyway, VIP seems to have lots of benefits assuming you have eliminated mold/mycotoxins from your home and body as well as Marcons from your nose. I am in the process of trying to do that again and plan to start VIP again soon. An FMT fixed my pancreatitis and improved my health to the point that I got back to 70%, but then divorce drove me back into survival mode. Anyway, you can get VIP from PDLABS in Texas but it is very expensive. You can make the nasal version of VIP which is the recommended way by buying the peptides canlab.net and bacteriostatic saline (search Amazon).. There are many more doctors who are mold literate. Look for videos by Dr Heyman and Dr Crista.
The below link details VIP but the whole website is excellent information on evaluating and treating mold/mycotoxins http://biotoxinjourney.com/vip/
Hi Chris,
I took low-dose nasal VIP for 6 months and tolerated it very well. But as soon as I bumped it up to the full dose, which I took for 8 days, I reacted very poorly to it. The main symptom is bad fatigue, which still persists despite my stopping VIP 3 weeks ago.
Any insight on this by any chance re: what may have happened?
Thanks,
Dave