ME and CFS
Page for #pwME and #pwCFS running their own experiments.
Simpler for the cognitively impaired ;-)
Dedicated to @TapanuiFlu and other long suffering #pwME who work for the cause, which is simply getting better.
Two books to have on your shelf by Dr. Stoff.
Here's Dr. Stoff's basic premise or philosophy, tying the two books together.
Ai/E10? Made from immune stimulated cow's milk; curds, whey removed; remainder pushed thru a filter,dried. Contains immune transfer factors.
Holistic? Means don't leave anything out. 5 pillars are the foundation of health 1) Diet & nutrition 2) Hormone levels/balance 3) Digestion/absorption 4) Detoxification & elimination 5) Immune system function and response. Also includes spiritual, mental, will, intention, visualization...
NK level? Natural Killer Cell Activity Level, measured by a test to see how many K562 cells they can destroy.
Let's see an NK cell 1st.
NK cells can destroy virus infected B-Cells, but hold fire if the B-Cell is OK.The two meet and greet. Red area in NK cell is an organelle with hypohalous acid for burning holes in target cell walls, allowing inside access.
But NK cells do more than meet & greet. NK cells are judge, jury & executioner.
That video from this paper shows a Natural Killer cell frying an EBV-transformed B-cell from immortal cell line 721.221. Referred to as 221. Sweet little NK cell rope trick!
If Dr. Stoff is right, many #pwme have their own virus infected B-cells producing viruses day and night. Let's learn more about viruses.
Many viruses take up residence in our bodies and don't leave. The Herpes family has this characteristic. The table in Section 6 of this wiki entry identifies latency locations.
Latency is Ok but Chickenpox (HHV3) is latent in our nerves after we clear the spots as a child. If our immunity fails later, a flare up along our nerves is manifest as shingles. The Chinese call shingles 'the snake' as the skin eruption often wraps around the abdomen, along the inflamed nerve's length.
EBV (HHV4) commonly causes Mono if infection occurs in teens or later. If you get over Mono, the virus remains latent in you B-cells. If you don't clear the active infection, the active location will be the B-cells. ME/CFS can be the result.
In this video, a lab tech completes mixing B-cells with EBV virus & watches the immortal cell line proliferate. This is a huge change in the B-cell, as they are very difficult or impossible to grow in the lab.
The EBV infected B-cell is hard to beat. Defeating it is made worse when T-cells release a-interferon and attack infected B-cells. T-cell quality falls as production increases, and immune dysfunction results.
Some of the low quality, atypical T-cells have a large nucleus and look mononuclear (thus the name mononuleosis).
How to get better? Best to see a doctor like Dr. Stoff. There may be reasons why one would not, such as inability to travel, money etc., but can you do anything yourself? Maybe. Let's look at the top four food supplements to start, but with the caution that anything new to you should be an assumed allergen. Touching a grain of the new material to the outside of a lip may give an allergic reaction after minutes or hours. A second test with a bit more is a good idea. Then, a taste like a cop checking a suspicious white powder in a crime drama. Now wait a day since you just ate some.
Ramping up to a single capsule of Cyto-Ess should be done cautiously, as it has produced Herx reactions at as little as 1/4 capsule dose. This can be a good sign, but should be avoided by using a lower dose for longer. A severe Herx reaction can lead to shock.
1) Stoff patients take 200-800mg of Ai/E10/day. More on Dr.Stoff's baby later.
2) Astragalus-follow label, but 0.5-2g/day is normal.
3) Vitamin C 1500+mg/day. Best taken same time as Ai/E10 since it is eliminated from body quickly. Time-released, chewable or buffered versions may reduce stomach burn. Swallowing a large tablet is almost sure to irritate the stomach.
4) Vitamin D in blood to be at least 70ng/mL. Without a vitamin D test 1000-4000IU/day is a common recommendation. Dr.Stoff claims that he takes 5000 IU per day.
This picture shows a good product no longer sold, but with a good combination of ingredients.
How does Dr. Stoff support Natural Killer cell activity? Myeloperoxidase (MPO) & Nitric Oxide Synthase are the NK cell's enzyme tools. How to support them?
MPO makes hypohalous acid (HOCl, HOI, HOBr) used by NK cells to drill holes in target cells. It contains iron, needs Chloride, Iodide & Vitamin C.
This suggests that iron levels be maintained in mid-normal range. If your blood tests show low iron, there are many supplement choices, with the glycinate form popular, moderate cost, and easy to digest.
MPO needs Chloride & Iodide. Chloride is not a concern. Iodide, however, could be. The best choice may be a daily multivitamin, but we all take ours, right? Right?
Nitric Oxide is the NK cell's 2nd tool. Nitric Oxide Synthase (NOS) makes NO from L-arginine, but L-arginine is required by viruses to replicate. Can you win?
Dr.Stoff wrote briefly about arginine as the source of nitric oxide and that lysine interferes with arginine, so is antiviral in the 2 books, but it seems more about awareness.
Amino acids like arginine & lysine are the product of protein digestion & help build new proteins & chemicals in the body. Its worth learning about what foods are high in arginine and lysine and seeing their effect on how you feel. More on NO?
Dr. Stoff CFS patient viral infections in 1992. EBV 60%, 25-30% HHV-6,10-15% CMV and Coxsackie virus. The 5% worst off had 3-4 viruses raging at once. By the time 3-4 viruses are active in the body, an autoimmune syndrome will manifest itself. It seems that the autoimmune problems resolve as specific immune dysfunctions are addressed.
There is another doctor positive on Ai/E10. Sylvia Wiebe-Vet. has made interesting use of the product. Animal healing Stories.
Within two minutes James Stewart tells the difference between applied science & 'true' science.
Protact Inc. all about applied science. Here Dr.Stoff talks for 3.25 minutes on immune foundation and function.
The biochem foundation for health is a common thread among CFS authors. William G. Crook, Jacob Teitelbaum, Jesse Stoff mostly agree. Make a virtual visit to Dr. Teitelbaum and get a prescription to fill. This robotic consultation is free and gives good suggestions.
The location of the EBV virus suggests why Rituximab might help symptoms. It destroys mature B-Cells + the virus factory inside them.
Rituximab's amputation of immune system limb temporary-it grows back. w/o immune system improvement in the meanwhile, reinfection seems likely.
If~60+% CFS patients have EBV or other B-cell virus, it shouldn't work for all. If rest of immune system remains weak, CFS relapse is likely.
So, viruses are a thing for
#pwme. Some even take anti-viral meds.
Promoting infection:antibiotics,the pill,pregnancies,steroids,sugar. Antibiotics eliminate bacterial competition in gut, yeasts multiply.
Yeasts release toxins,including alcohol, immune suppressors & can grow thru the intestine wall, making gut leakier. Create sugar cravings.
Dr.Crook favoured Nystatin, low sugar diets, fresh food, Omega 3s, probiotics,garlic but also used Nizoral, Diflucan. Read one of his books!
Point made by Dr. Crook. Yeast infections always have an intestinal reservoir to be addressed.
#pwme believe that their disease is autoimmune related. Listen again to Jesse Stoff talk about PITTS.
Then let's review 5 books that might be relevant to autoimmunity and
Common thread: Poor protein digestion leaky gut admits proteins into the blood. Immune system attacks proteins & creates circulating immune complexes.
Circulating immune complexes leading to inflammation.
Immune system confuses food proteins with our own tissues leading to immune dysfunction & autoimmunity.
Enzymes are organic catalysts, facilitating chemical reactions. Critical to biochem in the body, Job 1 is to break proteins into amino acids.
Job 2 is to convert complex sugars and starches into usable form-simple sugars.
Job 3 is to break down fats into fatty acids and monoglycerides.
Cutler's 'Micro Miracles' book is nice for 2 reasons. Great stories & how she relates cravings with food intolerance and sensitivity.
She details use of plant enzymes for RA, weight, hormones, MS, low energy, IBS, Crohn's, Colitis. A perimenopausal patient got red hair back after having gone grey!
Another way to put it 'You are what you absorb, not what you eat." Dr.Cutler's personal problem was colitis. Other authors had problems too.
Michelle Schoffro Cook and Ellen Cutler both favour plant enzymes over animal enzymes because they work over wider range of pH and temperatures.
Susan Blum's book The Immune System Recovery Plan details 4 steps to recovery: 1) Use food as medicine. 2) Manage Stress. 3) Heal your gut. 4) Support your liver. (5) infections etc.
Amy Myers' book The Autoimmune Solution details 4 steps: 1) Heal your gut. 2) Eliminate Gluten, Grains, Legumes, Nightshades. 3) Tame Toxins. 4) Heal Infection & Manage Stress.
Tom O'Bryan's book The Autoimmune Fix is split: 1) The problem - leaky gut - 50 shades of gluten - 24 shades of autoantibodies. 2) The fix - eliminate all gluten, heal the gut.
The Autoimmune Fix is something more. Remember https://youtu.be/QH-6UImAP7c?t=45Minority … Minority Report? Tom Cruise worked in the Bureau of Future Crimes.
O'Bryan works in the department of future diseases. Self(Auto)Antibodies exist in the blood years, often a decade in advance of diagnosis.
O'Bryan shows antibody test panels of patients in trouble with 2/3 of results out of the 'good' column. After 6 months - 1 year all results in the 'good' column.
It no longer is - there is no obvious marker or tissue damage.
Eating 100% gluten-free seems hard. Can enzymes help? http://thedr.com/products-page-2/nutrition-formulas/glutenza/ … claims breakdown of gluten before leaving stomach. Since gluten is a problem when it touches the intestine, breaking it down in the stomach should eliminate any problems.
#crohns, O'Bryan notes Anti-Saccharomyces cerevisiae (bread and wine) yeast antibodies predict a 100% chance of developing the disease within 3 years.
When trying to solve a problem, drawing a cause-effect fishbone diagram can sometimes help. Here's one for immune dysfunction.