MCAS – it’s the elephant in the room. It definitely plays a role in ME/CFS/FM and long COVID and yet in some ways, it’s still so mysterious.
You can say one thing about mast cell activation syndrome (MCAS) – it’s weird! In some ways, it seems tailor-made for rejection by the medical community. Its proponents claim it can cause virtually every symptom in the book (big red flag), yet it lacks good or even half-good measurable diagnostic markers (bigger red flag).
Amber Walker, who has written several excellent books on MCAS, wrote that she felt like she was faced “with the colossal challenge of summarizing something that is a black hole of possibilities with very few concrete, research-based facts”. She underlined the fact that we need to keep in mind that “MCAS research is still very much in its infancy. There is a lot we don’t know and a lot that will change.”
MCAS decidedly did not luck out with its often not so illuminating laboratory tests, but it did luck out in one way: the treatments for it – as we know them now – are generally cheap and safe – which means doctors can bypass the testing phase and use a response to treatment instead. If a treatment helps, the diagnosis is made.
This blog used Amber Walker’s book, “Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome“, a recent YouTube presentation by the Bateman Horne Center’s Dr. Yellman (see below), an interview with Dr. Bela Chedda done several years ago, and a review paper by Theoharis Theorharides to inform it.
Amber Walker’s Story
Amber Walker’s saga with MCAS very likely began at a very young age.
Before getting into the nitty-gritty of mast cells, the first part of Amber Walker’s fascinating story must be told.
At the age of 30, Amber Walker had a realization – while exploring Colombia no less. She had to see the world – and right now. She sold her stuff, bought a one-way ticket to Australia, and set off on the backpacking trip of a lifetime – by herself.
As a windup for the Boston Marathon, she began a running tour of Australia, New Zealand, Indonesia, and Thailand (while checking out the hot surfing spots, of course).
The event that helped to trigger the collapse of her health occurred near the end of her trip, when after a baby monkey attached itself to her shoulder, she was attacked and bitten by the momma monkey. She had a strong reaction to the first and second rabies vaccine shots. That wasn’t particularly surprising, and maybe what happened next wasn’t either. She wasn’t about to miss the Boston Marathon, so three days after her last vaccine shot, she lined up at the starting line, feeling terrible.
Suffering from strange muscle sensations, dizziness, and gut pain ,she barely made it through the race. How barely? It took three hours for her to walk a mile from the finish line to get her gear bag. She vomited and had diarrhea for several hours. She now suspects she was in a “mast cell storm” and that the combination of the rabies vaccine, the international travel, and the marathon pushed her over the edge.
It turned out, though, that our seemingly healthy marathoner, adventurer, and world traveler wasn’t in such good shape after all. In fact, she was already pretty much of a mess and had been for quite some time. Unbeknownst to her, she’d been suffering from symptoms of MCAS for almost her entire life.
They occurred early. Digestive issues, abdominal pain, constipation, hives, rashes (she was diagnosed with chronic urticaria and took daily antihistamines), extremely sensitive skin, dermatographia, asthma, allergic reactions to dogs, horses, hamsters, rabbits and cats, foods (pine nuts, chocolate, shellfish), repeated sinus infections (countless antibiotics), Raynaud’s disease: they all showed up pretty early.
Abdominal pains were a constant for her entire life, but in her teens, she began having abdominal attacks – intense periods of abdominal pain that felt like glass was cutting her insides – which left her experiencing mental confusion, anxiety, and even delirium, and sometimes left her unable to eat or drink anything for days. Numerous diets had no effect.
Next, a car accident was followed by swollen neck and groin lymph nodes, fatigue, and iron-deficiency anemia. She had her first, but not nearly last, experience with anaphylactic shock and a trip to the hospital after being stung by a yellow jacket. Then came chest pain, heart palpitations, low blood pressure, near-fainting episodes, urinary tract infections, severe cold intolerance and occasional heat intolerance, and constant sinus infections.
All this while being a competitive swimmer at the college level – training 2-4 hours a day. She was living proof that your immune system can be a mess without impairing one’s ability to exercise. After her eardrum ruptured, sending blood and pus flying during an airplane flight – she swam the next day. After she found herself gasping for air during a slow warmup, she checked herself into an urgent care clinic and found she had pneumonia. She recovered enough to enter her (last) swimming meet – but her lungs were never the same.
Despite having good oral hygiene, her gums receded to the point where her front teeth became loose and she had to have a gum grafting procedure. (Unfortunately, she couldn’t tolerate the pain medication – something that had started long before.)
In her 20s, she began experiencing numbness and tingling and episodes of weakness and vision, and problems with balance and vertigo. Sometimes they came for a while and then mysteriously disappeared. Brittle nails, white coating on her tongue, hair loss, night sweats, anxiety and depression, jaw pain, TMJ, frequent joint subluxations, IT band pain, knee meniscus problems, ankle and wrist sprains, plantar fasciitis – they all added up. A car accident left her with severe neck instability. In an odd accident, she fractured her tailbone while doing a jump into the river that her friends accomplished easily. (People with MCAS appear to be at increased risk of osteoporosis.)
Over time, she saw countless doctors… She also completed graduate school and traveled and worked in Peru, picked up some parasitic infections, was exposed to bed bugs, and flea infestations, was attacked by wild dogs, and was even kidnapped. Coming back home, her abdominal attacks worsened – and then she went on her trip to Australia.
Another blog will sort out what happened afterward – the collapse of her health, her MCAS diagnosis, and the gut diagnosis which finally cleared that mystery up and ultimately, her return to at least acceptable health. Her story demonstrates the many signs of MCAS that may be present long before someone reaches the point where their functionality is dramatically affected.
Amber clearly didn’t have ME/CFS at this point. I was struck that with all the health problems she had, she was still able to competitively swim and run and backpack. (I, on the other hand, didn’t have any health problems prior to ME/CFS and can’t do any of those. Go figure.) MCAS does not necessarily, then, produce exercise intolerance and ME/CFS. On the other hand, it’s clearly a big deal in ME/CFS. Learning why it’s such a common comorbidity in ME/CFS will undoubtedly help us understand both diseases.
Mast Cell Activation Syndrome Makes Good
Dr. Bateman, of the Bateman Horne Center, is the last person one would associate with ‘woo-woo” treatments. Her sober, careful manner and focus on conservative, evidence-based treatments has enabled her to be able to speak to a wide variety of audiences. In a word, she is trusted.
The fact that she and her colleague, Dr. Yellman, fully embrace MCAS despite the wretched diagnostic tests really says something about the potential efficacy of MCAS treatments in chronic fatigue syndrome (ME/CFS). Indeed, the list of ME/CFS practitioners that employ MCAS treatments from Dr. Chheda to Dr. Kaufman, to Dr. Klimas and Dr. Bateman, is a long one.
Dr. Bateman went so far as to say that MCAS is found frequently in the post-viral syndrome population (ME/CFS), in Ehlers Danlos and hypermobility patients – and now she’s seeing it “in spades” in long COVID. She actually said, being careful, that “something that appears to be (:)) mast cell activation tends to be very, very frequent”. She said that it’s been “really gratifying” to be able to include MCAS treatments in her list of supportive treatments. Note the word “supportive” – not curative – but definitely helpful.
Long COVID, ME/CFS/FM and Mast Cells in the Research Arena
It’s not surprising, given the lack of good laboratory tests to diagnose, that the few MCAS/long-COVID papers that exist tend to focus on symptoms, or are hypothesis papers. It’s clear, though, that acute COVID-19 (and presumably other infections) releases a vast array of immune mediators (120 and counting), and there’s no doubt that mast cell activation occurs during the infection. With regard to long COVID, early studies have shown a dramatic symptom overlap in people with long COVID and people with documented mast cell activation syndrome. That’s about the end of the story, though.
The situation is not much better in ME/CFS and fibromyalgia where no studies that I could find have quantified the prevalence of MCAS in either disorder. Despite the fact that MCAS is a major clinical concern in ME/CFS/FM, it has yet to make a dent in the ME/CFS/FM research world.
Mast Cells
Mast cells are white blood cells found in the connective tissue (it’s everywhere) in the body. They’re most prominent in the boundary between the outside world and us (skin, mucous membranes, digestive tract, nose, lungs, etc.).
When activated, they can release a variety of immune mediators (histamine, tryptase, cytokines, chemokines, leukotrienes) – each of which has different effects. While one person’s mast cell might release ‘X’ mediator – another might release ‘Y’ mediator.
Theoharides reports that “histamine is associated with headaches, hypotension, and pruritus (itching), tryptase with inflammation and fibrinogen lysis; cytokines and chemokines with… symptoms of generalized inflammation and fatigue, PGD2 with flushing, and leukotrienes with bronchoconstriction.”
These mediators trigger symptoms by activating nerve fibers in the skin, gut, etc., which relay pain signals through the dorsal root ganglion into the spinal cord, and into the brainstem. The brainstem then releases substance P and CGRP into the trigeminovascular system, and into dural mast cells found in the connective tissues (the dura) that surrounds the brain and spinal cord.
The trigeminal nerve is a complex nerve that contains both autonomic and sensory nerve fibers and regulates eye movement, the nose, and chewing. It’s the nerve that goes bonkers in migraine, and Yellman noted that central pain sensitization can clearly be activated by mast cells.
Theoharides calls mast cells “the immune gateway to the brain“, and notes that mast cell activation can degrade the blood-brain barrier. Mast cells in one area are able to trigger mast cell activation in sometimes distant locations.
Mast cell activation syndrome (MCAS) occurs when too many mast cells are present, and/or those which do occur are twitchy; hypersensitive, and overactive. The result, in either case, is too much mast cell activity and therefore increased inflammation via the release of a wide variety of immune activators (histamine, leukotrienes, prostaglandins, tryptase, proteoglycans, platelet activation factor, TNF-a, interleukins, and others).
These factors can produce just about any symptom in the ME/CFS/FM/long-COVID book: fatigue, muscle pain, dizziness, fainting, brain fog, headache, chest pain, rapid heart rate, irritable bowel, acid reflux, breathing problems, hives, flushing, osteoporosis, uterine cramps/bleeding, skin irritation (dermatographism).
These sometimes twitchy mast cells can also potentially be triggered by just about everything: from temperature changes to stress (of any kind), to infection, to exercise, to different foods, to drugs, to odors, to insect bites, to skin irritation to sunlight – they all can activate mast cells in different patients. Noting that symptom surveys by the Mastocytosis Society point to “stress”, especially emotional stress, Theorides called stress a key trigger. He did not mention foods in his key trigger list but did include drugs such as antibiotics, NSAIDS, opioids, and estrogen.
Mast cell activation has been associated with many diseases such as fibromyalgia, bladder pain syndrome, vulvodynia, migraine, irritable bowel syndrome, ME/CFS, postural orthostatic tachycardia syndrome (POTS), rheumatoid arthritis, lupus, chemical sensitivities, Ehlers Danlos Syndrome, and early osteoporosis. Theoharides, who now works with Nancy Klimas at the Center for Neuroimmune Studies, noted its particularly high rate of incidence in ME/CFS.
Clinical criteria
Doctors identify MCAS in three ways: via symptoms, treatment, and laboratory markers.
Symptoms
The symptoms tend to be episodic and need to affect two or more of the following systems:
- Skin – hives, flushing, edema, dermatographia
- Gut – nausea, vomiting, cramping, diarrhea
- Cardiovascular – dizziness, fainting, rapid heartbeats
- Respiratory – wheezing
- Naso-ocular – itching, nasal stuffiness.
Elevation of Laboratory Markers
Total serum tryptase – Yellman reported that serum tryptase is VERY specific for mast cell activation – but is hard to run and has poor sensitivity; i.e. while a positive test does indicate MCAS, a negative result does not rule it out. In an earlier interview, Dr. Bella Chheda noted that only a small percentage of people have elevated tryptase, and when tryptase levels are elevated, they’re usually borderline elevated (13-20)
Plasma prostaglandins – Dr. Chheda reported that the two main MCAS markers she uses involve the prostaglandins. Prostaglandin D2 is the most helpful marker, but because it can have diurnal variations, it may take several tests to capture the elevation. F2 alpha – which is a breakdown product from other cells, as well as mast cells – is moderately diagnostic.
N-methylhistamine, 11B, leukotriene E4 – 24 hour urine tests.
Biopsy tissues – GI tissue – if you’ve had an endoscopy done – you can ask them to stain for the mast cells.
Dr. Bela Chheda told Health Rising several years ago that these lab tests can be more problems than they are worth, and often it’s best to try out the treatments and see if they work. Dr. Yellman clearly agrees.
Treatments
A General Approach
Amber Walker noted that a trial-and-error process seems almost inevitable with mast cell medications and other treatments. Medications that are questionably helpful should not be continued: only medications that are clearly helpful should be.
She reported that Dr. Afrin agrees, who stated:
“If at any point it is thought that a given medication is no longer providing significant benefit, it should be stopped or weaned to see what happens. No patient with any disease should be taking one milligram of one more medication if it is not clearly providing significant help.”
Diet
First Dr. Yellman focused on two possibilities – low histamine diets and diamine oxidase. He noted that while low histamine diets can be difficult, they can be helpful for some. Walker was rather sanguine about low histamine diets, calling them “one of the most controversial topics” in MCAS, and reporting studies that cast doubt on their effectiveness.
Dr. Afrin – a seminal figure in the field – stated that “there is no one “low histamine diet that works for everyone – every patient is different”, and that, like other treatments, finding the right diet is a “big trial-and-error process”. Most patients should know within a month if a diet is working.
Dr. Yellman noted that diamine oxidase can help patients tolerate more foods. Dr. Brown, a pulmonologist, said low histamine diets can be successful in “some” patients and they’re hard to adhere to. She echoed Dr. Afrin when she said that it “really depends on what people find helpful”.
Antihistamines
Walker noted that twice daily use of H1 and H2 antihistamines are often recommended for MCAS. When used together, they’ve been shown to reduce inflammation in people with hives. A review asserted that the dosage of these drugs can be increased two to four times the typical dose in urticaria (hives).
Chheda reported that 2 antihistamines are often needed to have an effect, and relayed the story of a patient with a classic case of ME/CFS who did not appear at first blush to have MCAS. An antihistamine trial told the tale, though; while neither 1-2 antihistamines a day made a difference, adding a third one did – it completely removed her anxiety.
Amber Walker noted that three generations of antihistamines exist. (Other sources lop the 2nd and 3rd generations together.)
H1 Receptor Antagonists – suppress generalized histamine releases. First-generation antihistamines were developed as far back as the 1940s (diphenhydramine (Benadryl), chlorpheniramine (Chlor-Trimeton), doxepin hydrochloride (Sinequan), and others were effective but sedating. The problem was that they crossed the blood-brain barrier and whacked some areas of the brain. Benadryl and Chlor-Timeton also have anti-cholinergic properties – and Benadryl has been associated with an increased risk of dementia. Walker recommended that these drugs be used in flareups unless other antihistamines are not effective.
Second-generation antihistamines – (loratadine (Claritin), cetirizine (Zyrtec), levocetirizine (Xyzal), desloratadine (Clarinex), ketotifen (Zaditor/Zaditen in Europe), developed in the 1980s, were also more focused on the H1 receptors, worked for longer periods of time, had more anti-inflammatory effects, produced less drowsiness and fogginess, and have fewer cardiovascular side-effects.
Third-generation antihistamines – fexofenadine (Allegra) – removed the cardiovascular risk. Note that second and third-generation antihistamines, while better, can still cause drowsiness.
H2-Receptor Antagonists
- famotidine (Pepcid), ranitidine (Zantac), cimetidine (Tagamet), nizatidine (Axid).
Walker reported that H2 receptor antagonists suppress gastric acid secretion by blocking histamine receptors in the stomach and are commonly used for acid reflux but can also help in people with chronic mast cell activation. They are different from proton-pump inhibitors.
One worry is that regular use may contribute to Vitamin B-12 deficiency. Earlier, an increased risk of dementia was a concern, but later studies have not found an association.
Leukotriene Inhibitors and Leukotriene-receptor Antagonists
- Montelukast (Singulair), zileuton (Zyflo), zafirlukast (Accolate).
These drugs hit mast cells early in their development – reducing their development in the bone marrow and their recruitment into the tissues. They also appear to have significant anti-inflammatory properties via their impact on innate immune system cells like monocytes and neutrophils.
They appear to help most with respiratory symptoms and general mast cell activation symptoms. People with elevated prostaglandins may see the most benefit. They are widely used to suppress hives and help with asthma, and are reportedly well tolerated.
Tumor Necrosis Factor Antagonists
- Etanercept (Enbrel), adalimumab (Humira), Infliximab (Remicade).
These expensive drugs are typically prescribed for conditions like rheumatoid arthritis, Crohn’s disease, and psoriasis. They are not usually used in MCAS, but in theory, they should be helpful.
Mast Cell Stabilizers
Dr. Yellman said he likes to hit people hard and fast with mast cell stabilizers and considers them a bit more effective than using H1/H2 blockers alone. He included compounded cromolyn sodium or ketotifen, and over-the-counter quercetin.
Cromolyn Sodium – One of the more commonly prescribed mast cell drugs, cromolyn has its challenges. Well absorbed in the gut, the liquid version is poorly absorbed in the rest of the body. Walker reports that it’s expensive, can take weeks to months to have an effect, and should be taken 30 minutes before meals, often 3-4 times/day. Doses are also slowly titrated up over time. Theoharides reported that cromolyn can cause severe diarrhea in about 15% of patients, and hair loss in about 10% of patients.
Walker states that cromolyn can be very helpful for people with food sensitivities and chronic gut symptoms. Yellman reports that liquid cromolyn or Gastrocom – taken 15-20 minutes before eating – can make an enormous difference in gut symptoms. Compounded cromolyn provides more systemic relief – and he uses it more for symptoms such as migraines and neuroinflammation, and craniocervical instability. People who have trouble tolerating the compounded cromolyn can get benefits by taking the liquid cromolyn/Gastrocom 15-20 minutes before taking the compounded cromolyn.
Ketotifen – Ketotifen is a compounded antihistamine that Dr. Chheda said she uses regularly. It requires a prescription and is used in a variety of related conditions including asthma, allergic rhinitis, allergic conjunctivitis, atopic dermatitis, urticaria, mast cell activation syndrome (MCAS), allergic and nonallergic anaphylaxis, and food allergy.
Quercetin and the Flavonoids – Quercetin is a flavonoid which (like other flavonoids apigenin and kaempferol) may reduce mast cell degranulation by inhibiting certain pathways. Animal studies suggest these flavonoids are able to reduce the release of numerous mast cell mediators. Able to affect the brain, quercetin was able to return brain glutathione levels to normal in stress-induced, sleep-deprived mice. Culture studies suggest that quercetin, which is considerably cheaper and easier to use, is more effective than cromolyn at both reducing mast cell activation and release, and at reducing cytokine levels.
Quercetin, though, has in the past had poor bioavailability. Liposomal or enteric formulations (NeuroProtek, Quercetin Phytosome (Thorne) that are available today appear to have mostly solved that problem. Note that it can take 1-6 months for the benefits to show up.
Amber Walker proposed that “it’s entirely possible that a flavonoid supplement could be as or more effective than a regimen of mainstream prescription medications – and could come at a reduced price in the long run.”
Luteolin – Walker noted that luteolin is a transcription factor inhibitor that is able to cross the blood-brain barrier and may also be able to reduce inflammation and microglial activation. Theoharides reported that luteolin is a mast cell inhibitor and can decrease histamine secretion.
Nancy Klimas noted that luteolin is able to cross the blood-brain barrier and may be able to help with brain fog. In culture experiments, both quercetin and luteolin have been able to inhibit the release of many mast cell factors.
Theoharides recommended that luteolin be used in conjunction with a tetramethoxyluteolin-containing skin lotion and noted that a few weeks are required before mast cells are sufficiently inhibited. It may also be combined with vitamin D3.
Omalzumab (Zolair) – Waker calls Zolair a “commonly utilized treatment option” that is considered a 3rd-line treatment; i.e. something to be considered if other options don’t work. Zolair binds to free IgE – thus stopping an allergic inflammation cascade from the beginning. It’s expensive, but is used in people with chronic hives, asthma, and other conditions.
Yellman reported that Zolair can be very effective in those who do not respond to other treatments, but he’s only rarely had to reach for it. A pulmonologist called getting biologics approved “one of those most challenging things”.
Allergy desensitization process is, in Yellman’s opinion, a kind of fool’s errand.
Others
Walker noted a raft of other possible treatments that may not ordinarily be thought of as MCAS treatments. Benzodiazepines (lorazepam, clonazepam, alprazolam) appear to be able to reduce mast cell-induced anxiety in some MCAS patients. Immunomodulators such as azathioprine, methotrexate, cyclosporine, and prednisone (used on a short-term basis) have been used in MCAS as well. Stem cell transplantation and tyrosine kinase inhibitors (4th line treatments) are two other possibilities that are clearly rarely used.
Cannabidiol (CBD) and CBD oil – Cannabinoid receptors are abundant on mast cells and CBD appears to be able to reduce the production of cytokines produced by mast cells. Among many other things, CBD oil has been associated with a reduction in allergy symptoms, and can be helpful with asthma. Walker wrote that anecdotal reports suggest CBD oil may be particularly helpful in people experiencing high pain levels, inflammation, and insomnia.
Other Supplements – Walker reports on many other supplements that may be able to help. Note that virtually all studies showing impacts on mast cells are culture or animal studies. They include NAC (general aid), Vitamin C, Vitamin D and magnesium (decreases mast cell activation/ low levels of either leave the door open to MCAS (?)), alpha lipoic acid (good for nerve-related pain), bromelain (inhibits prostaglandin synthesis – pair with quercetin), curcumin (suppresses mast cell degranulation), mangosteen (mast cell stabilizer/inhibitor), khellin (long cited as mast cell stabilizer), resveratrol (reduces prostaglandin synthesis), milk thistle extract (reduces prostaglandin and leukotriene synthesis), melatonin (mast cell secretion), pancreatic enzymes, omega-3 fatty acids, probiotics/fecal transplants,
Future Drugs
Better antihistamines are under development and, at least in one case, are available for some.
H3 receptor antagonists block histamine release in the brain as well as the peripheral nervous system. Instead of being sedating, though, H3 antagonists have stimulating effects and are being researched in neurodegenerative conditions like Alzheimer’s disease. Because they’re found in high densities in several areas of the brain (basal ganglia, hippocampus) associated with cognition, they may have positive cognitive effects (!).
Pitolisant (Wakix) accesses the brain and is being used to maintain a wakeful state in narcolepsy – an interesting effect given the decidedly unwakeful state often found ME/CFS. It’s also being considered in attention deficit disorder – another common problem in ME/CFS and FM.
Resource
- Amber Walker’s Origin Wellness website – states Amber Walker “specializes in working with patients who suffer from chronic conditions including fibromyalgia, dysautonomia, mast cell activation disease, covid and vaccine complications, Ehlers-Danlos syndrome, migraine headaches, inflammation from mold, and chronic viral, gastrointestinal, and bacterial issues that influence immune system function.”
Conclusion
MCAS is a huge field and this is only an introduction to it. Some things do stand out, though. Although MCAS is not well studied in ME/CFS/FM, long COVID, and similar diseases, it’s clearly common, and while not a cure-all, can be quite amenable to treatment. Plus, the most commonly used treatments are readily available, are often cheap, and usually produce few side-effects; i.e. it’s amenable to self-experimentation to some extent.
Coming up – the conclusion of Amber Walker’s story. We’ll watch Amber as she gets sicker and sicker, develops chemical sensitivities, neurological problems, an ME/CFS/FM-like condition, etc., but ultimately recovers – not all the way – but a large part of the way using a variety of techniques, including several that are not directly MCAS-related and one, in particular, that I had never heard of before, which made a huge difference.
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Benzodiazepines are mast cell stabilizers, they are not used just for anxiety in MCAS.
There’s a great deal more to MCAS symptoms than could be covered in a blog post. The Mast Attack blog is a good resource for information on mast cell diseases including MCAS, it’s a site maintained by a scientist who has mastocytosis.
Thanks for the resource. 🙂
Thank you for doing this blog post, as well as all of the others you’ve written!
Also adding that many people who try OTC antihistamines are often discouraged by reacting to them. While it’s very possible to react to active ingredients, it’s also likely that they are not reacting to the active ingredient, but the many, many inactive ingredients that are part of every manufactured medication.
I would encourage people not to give up on an antihistamine if they have a reaction to it, and try another manufacturer or two to see if they tolerate it.
Many folks with MCAS have a list of inactive ingredients (excipients) that they know they react to. By comparing versions that caused problems to versions that don’t, it’s possible to figure out which ingredients are the troublemakers and then avoid them going forward. OTC meds are easy because all of the ingredients are on the package, dailymed, an NIH site, is useful for finding out the ingredients for prescription meds.
Thanks, Jenn – that’s a very good point and a reason to keep trying different ones and see what happens.
Absolutely! Even though we all know it’s not easy to do.
Thank you for sharing that Blog, I will definitely visit.
I hope you find it helpful! It was comforting to me when I was first trying to figure out what was going on.
Last summer started itching like crazy and face broke out in a rash twice after hot shower and face product. I’d seen MAST cells mentioned on this site but never paid much attention since didn’t think I had this issue. Since itching, mentioned them to both PCP and dermatologist who said no. Allergist knew right away and said it is fairly common, that I was his 4th patient that day. Luckily it calmed down and not too bothersome (do take quercetin daily) but the doc said that 50% is idiopathic, 50 is autoimmune and less than 1% is serious, cancer and such. Mine is idiopathic likely caused by stress but I’m wondering, are the folks who have such terrible life altering symptoms from this typically in the autoimmune camp?
I can respond based on having MCAS and being a member of more than six patient forums for MCAS and other mast cell diseases, but I am not an expert!
MCAS as a result of autoimmune disease is not something I have seen many posts about, although I know it’s possible. I’ve paid close attention to the possibility since I have Sjogren’s.
Typically MCAS comes along with Ehlers-Danlos and POTS, and in the last few years, COVID. I’ve seen more instances of people who are immunodeficient and have MCAS than I have seen autoimmunity mentioned in conjunction.
There is speculation that MCAS has a hereditary component, and can be a primary condition as well as secondary to other conditions as noted.
Thanks Jenn, I just wondered since the doc said it was fairly common and mine subsided to be not a big issue, and yet it seems some have huge issues with it. I have recently had underarm and groin pain though so possibly MCAS is causing that. I’m back on an antihistamine to see if it helps. Blood work ok other than low white count at 3500 but I’ve had that at times before this new pain started. Interestingly after the doc told me that less than 1% had a serious cause I read about a man who started itching and turned out to be pancreatic cancer. Thanks again for your reply.
There’s so much more to learn about these conditions, I hope you’re able to make some connections soon that make a positive difference for your health!
It’s so hard to make sense of what’s out there and what our tests do and don’t show.
Hi Jenn, at almost 70 my time for any real quality of life is nearing an end but am hopeful for the younger ones, so much more awareness/research now.
Wow, what a life Amber’s led! I look forward to reading the conclusion to her story.
This piece is particularly timely for me as I started taking Cetirizine this week and almost immediately noticed a reduction in the sort of head cold symptoms that leave me feeling permanently unwell. As these faded I also noticed some improvement in mental clarity. It hasn’t touched the myalgia or energy production issues but just having a break from feeling constantly unwell has put a bit of a spring in my step. Time will tell if these benefits are real or lasting. I intend to start an H2 blocker (Famotidine) as well once I’ve established the best dose of Cetirizine.
Just wait till you hear what happens next. She is one tough lady. Good luck with the H2 blocker 🙂
Great post, Cort! I learned so much and was encouraged by the different over OTC meds that will help!
Thank you !
Me too – isn’t it nice that we can all try to get a start on this pretty easily! I’m going to give the OTC meds and quercetin a try. 🙂
Does anyone know of a lab that offers the 24 hour urine testing kit? a specialist I saw in Boston recommended I get tested however, I live in Toronto where this testing is not offered and no one seems to know how to advise me.
Erin, you might try contacting the Hoffman Centre for Integrative Medicine in Calgary, Alberta. They offer a lot of different test and do treat MCAS.
Thank you for this comprehensive article on MCAS.
I recall when I first heard the term years ago, I thought: Oh no, not yet *another* condition to add, potentially, to the long list of other ME comorbidities. Another condition to try to read up on, to try to treat, another condition not “believed” by the medical field as credible.
But over the years, I’ve read and seen many physicians in the field raise the possibility, as well as patients who have had real improvements.
And as you describe, there are many potential upsides to trying out these OTC medications & supplements. The MCAS symptoms certainly map onto many ME patients’ symptoms.
I hope this possibility is really pursued in ME and long Covid research.
In 2021, a study was published suggesting a link between mast cell syndrome and Gulf War Illness, chemical intolerance and possible Long Covid.
https://tiltresearch.org/2021/12/02/overlooked-for-decades-mast-cells-may-explain-chemical-intolerance/
This paper provides a long-sought link between environmental exposures and conditions like Gulf War syndrome, breast implant illness, chemical intolerance and possibly even long-haul COVID-19. This discovery represents a major step toward improved diagnosis, treatment and prevention.
The study by researchers at The University of Texas Health Science Center at San Antonio, also known as UT Health San Antonio, as well as the Massachusetts Institute of Technology and the AIM Center for Personalized Medicine, supports mast cell activation syndrome and mediator release (MCAS) as an underlying mechanism for chemical intolerance.
In 2021, a study was published suggesting a link between mast cell syndrome and Gulf War Illness, chemical intolerance and possible Long Covid.
https://tiltresearch.org/2021/12/02/overlooked-for-decades-mast-cells-may-explain-chemical-intolerance/
This paper provides a long-sought link between environmental exposures and conditions like Gulf War syndrome, breast implant illness, chemical intolerance and possibly even long-haul COVID-19. This discovery represents a major step toward improved diagnosis, treatment and prevention.
The study by researchers at The University of Texas Health Science Center at San Antonio, also known as UT Health San Antonio, as well as the Massachusetts Institute of Technology and the AIM Center for Personalized Medicine, supports mast cell activation syndrome and mediator release (MCAS) as an underlying mechanism for chemical intolerance.
Thanks Cort, I’m excited to read this! I couldn’t see the gist box but maybe there isn’t for this one – just thought I’d ask I’m case? Thanks!
Right – No GIST for this one – these kinds of treatment summaries are hard to put in the GIST. It’ll be back in the next blog 🙂
Totally understand! Thank you very much 🙂
Well now you’ve done it, Cort, you’ve opened up the discussion on my condition, MCAS. The symptoms overlap so much with ME/CFS, POTS, Fibro, and many auto-immune diseases that they can all be talked about as one.
A couple of years ago, I went to all my sources and compiled all of the symptoms of MCAS and ended up with a three column table that took up a whole page. I have 80% of these symptoms. My mother had it and my daughter has it, although their sets of symptoms do not match with mine. My daughter, for example, has vicious migraines that send her to the ER with intractable vomiting. I’ve never had a migraine. She has interstitial cystitis and I do not.
Dr. Lawrence Afrin describes the genetic mutations that contribute to these symptoms in his book, “Never Bet Against Occam”…..
The genetic basis for MCAS is not well understood but investigators have identified many mutations in the KIT receptor (responsible for proliferation and retention of mast cells in the tissues) and alternative splicing variants in the CD117+ peripheral blood cells of patients with MCAS.
• KIT-D816V—KIT is a master regulator protein found on and in mast cells. A KIT mutation typically results in the mast cell being constantly activated. About 90% of patients with mastocytosis have a KIT-D816V mutation (there is a PCR test for this mutation).
• MTHFR—The body makes several enzymes called MTHFR that are critical for the production of folate and many cellular functions. Patients with MTHFR defects may have an inability to clear histamine leading to MCAS and histamine intolerance.
• HNMT—In the central nervous system, histamine is broken down by histamine methyltransferase (HNMT). Patients with many HNMT defects will have trouble clearing histamine from the brain and nerves. Moodiness, sleep disturbance and frequent rashes or hives can be a sign of this defect.
• ABPI—In the digestive tract, histamine is broken down by diamine oxidase enzymes (DAO). Defects in ABPI lead to lower levels of DAO and therefore higher levels of circulating histamine.
• HLA—Variations in the HLA gene can increase the chances of gluten intolerance.
• VDR—VDR defects may lead to lower levels of Vitamin D, which is critical to immune health.
MAT gene is involved in the conversion of the amino acid methionine into SAMe. SAMe has critical functions throughout the body.
Looking back, it’s clear to me now that I have had this all my life in varying degrees. Symptoms come and go in severity, location, and timing. There may be a long term slow increase, or a sudden onset. There may be sudden remission or long slow remission. Or no remission. Symptoms may disappear and re-appear.
I had long slow increase, and then sudden worsening of symptoms. I’ve had so many symptoms checked out that showed nothing wrong. Heart pain – full cardiac workup shows nothing but some PAC’s. Joint pain – MRI shows nothing. Anxiety and depression – drugs do nothing. Gut pain, stomach pain, acid reflux – gastroscopy shows nothing. Brain fog – no one believes me. Extreme fatigue and weakness – “you should exercise!” Alopecia, post-nasal drip, chronic itching, extreme over-reaction to insect bites, heat intolerance, cold intolerance, sunshine intolerance, nose bleeds, hearing loss, migrating arthritis. I have the butterfly rash on my face like Lupus, but it’s not lupus. I have the tiny sores on my scalp like lupus, but it’s not lupus.
Fingernail changes, edema, and bruxism so bad that I chew up mouth guards like candy. Two years ago I had to have four crowns placed on teeth that I had cracked. Surgery for receding gums. Restless legs syndrome. SIBO. Hiccups multiple times every day. Histamine intolerance – if I ate a tomato today I would spend the next two days in bed, but I can eat potatoes. Very weird. Diarrhea and constipation, sometimes in the same day. Stiffness that makes it hard to walk some days. Joint pain that is continuous, and also so sudden and sharp that I have to grab onto something lest I fall down.
Then it got so bad I had to know what was going on because no one was helping me. I’m a retired academic, literature review is what I do. I already knew I had Fibro, but the day I found someone’s blog about MCAS the light came on. And stayed on. It was my new search term.
Dr. Afrin’s book shook me up like nothing else.
Dr. Theoharides’ videos added details I didn’t know before. Successful treatment is the diagnosis. H1 and H2 blockers only helped a little bit. Increasing the doses did not help and that much of an H1 blocker (I tried many different ones) dried me up so much I had difficulty talking and sleeping. That much of an H2 blocker (I tried several) eliminated my stomach acid and made my SIBO so much worse because without an acid stomach, you get bacteria into your small intestine where they proliferate like mad. In the last three years I’ve been treated for SIBO four times.
The only H1 blocker that helped was Ketotifen (Zaditen here in Canada). But it makes you very drowsy so I take it at night. Helps with nose and throat problems and helps me sleep. I call that a win. Cromolyn Sodium did nothing.
In desperation, I went on medical marijuana. Different parts of marijuana did different things. THC made me dull and lazy. CBD helped a bit. The thing that helps a lot is CBDA. It is the precursor to CBD in the raw marijuana plant. Non-psychoactive. VERY acidic so I have to dissolve the powder in MCT oil, a lot of MCT oil. Squirt some in my mouth at every meal and chew it into some food before swallowing. Tastes terrible. CBDA is one of the strongest anti-inflammatories on the planet. But it’s expensive to buy CBDA isolate powder. I do it anyway.
Then I discovered quercetin. A flavonoid! How could that do anything? Dr. Afrin says it helps some people. I found instant relief. I increased the dose. More relief! More quercetin. More relief! Not all quercetin supplements are equal. I’ve posted here about what quercetin supplements to buy. I take enough quercetin every day to choke a Clydesdale. If I’m having a flare-up, I take even more and then drop it back down. This is a miracle for me. I’ve been doing this for three years. No side effects so far, but if there are any, I will be the first person to find them.
Then LDN. I had one hell of a time finding the right beginning dose and the right maintenance dose but now I have it down right. I take 6mg every night before I go to bed. I will take this for the rest of my life. I’ve posted here about the way I’ve handled LDN. It’s a bit complicated, but it works extremely well for me.
Then red light therapy. Another miracle! I’ve posted here about this, also. Thanks to my husband for getting us both on this. I do it twice a day. Because of Dr. Theoharides I also take Luteolin but I’m not sure about that one. I may increase the dose to find out. PEA is wonderful for pain. Melatonin and pycnogenol are excellent for sleep.
Liposomal glutathione did not help. Nebulizing glutathione did not help. DAO enzyme tablets help a lot. If I didn’t take DAO before my meals, my diet would be restricted to white rice and corn cakes and fruit. Fortunately, I do not seem to be gluten intolerant. I cannot drink fresh milk but I can eat yogurt.
I’ve tried dozens of other things, some help a bit, others not at all. I’ve spent thousands and thousands of dollars trying dozens and dozens of things and fiddling with doses and timing. I have a schedule that works for me but wouldn’t work for everyone. You have to do all this work yourself because no one is going to help you.
I’m lucky in that I have a naturopathic physician who will do anything I ask. She told me, “You’re the expert here, not me.” The diagnostic criteria were only agreed on in 2012 and then promptly revised. At least some researchers and clinicians are working on it. Maybe we’ll get there some day. Maybe not. I’m hopeful but I’m not holding my breath, I’m taking charge of my treatment and keeping my ears open for anything, anywhere.
Thanks for reading my story. It’s a work in progress.
Sorry, my paragraph breaks didn’t come through.
Hi Ann1, I also have MCAS. I tend to have low stomach acid without any meds on board, and when I added H2s, it got much worse. I’m able to tolerate HCl and by taking it, I’ve kept enough acid in my stomach to digest well and not experience SIBO recurrences. I have a tendency to get SIBO too.
Just thought I’d throw this out there, you’ve probably already tried it, but you never know! H2s really help me with continuous full body itching, so I’m glad I was able to figure out a work around.
Best of luck to you,
Jenn
Hi Jenn
I tried HCL, but it didn’t work for me. But that was a long time ago. Maybe I’ll try it again! Thanks,
Thanks for relaying your experiences in such detail Ann1! They are very helpful. It was so good to hear that ketotifen and quercetin helped. I’m going to give quercetin a shot – and how about red light therapy – you just never know.
Good luck on your continued search 🙂
Thanks, Cort, and thanks for putting my paragraph breaks back in. If you need more information about quercetin, just ask, or email me. I look forward to the rest of Amber’s story. Best of luck to all of us.
Ann1, How do we search and find your prior posts about Quercitin, etc? They would be helpful.
Hi Joyce, I can’t figure out how to search this site for an individual’s comments, but I can give you “the gist” as I know it.
Quercetin is a flavonoid, found in small amounts in foods like onions and garlic. It is difficult to absorb from the intestine, but many people take plain quercetin anyway and it can be found in any health food store. You won’t get much out of these supplements, but there are three ways to increase absorption. The first method is by binding the quercetin to some kind of lipid. Examples include: Quercetin LipoMicel Matrix, Quercetin Phytosome, and others. These work ok for me, but the first one has peppermint in it and I can’t tolerate that. The second way is to combine the quercetin with something else, like bromelain or vitamin c. In my opinion, these products simply dilute the quercetin. At any rate, bromelain comes from pineapple and I don’t tolerate pineapple.
The third way is using enzymes to modify the quercetin itself. It’s called EMIQ quercetin and that stands for “enzymatically modified iso-quercetin”. This process results in very high absorption rates. One company, Natural Factors, claims that their EMIQ quercetin has 40 times greater absorption than plain quercetin. I have found this to be very good. There are other brands that use the same process and say EMIQ on the label. The Natural Factors brand is the cheapest.
The problem is, I take a lot of this. A lot. I buy the Natural Factors brand and I worked my way up to 3 capsules four times a day, at meals and at bedtime. You can take it on an empty stomach or not, doesn’t matter. The effects last from one meal to the next, but they do not last all day, so the doses have to be spread out over the day.
Start with one at each meal and then you can go up from there. I hope this works for you. Thanks for asking and please report back to us when you’ve given it a good try. We never know, what works for one may not work for others.
Thank you so much Ann1 for taking the time and energy to give a thorough reply!!
You also said “the way I’ve handled LDN. It’s a bit complicated, but it works extremely well for me.” I am curious about that as well. I also experimented for years and have had some help from it at 6 mg, taken every 6 days. More tips would be appreciated!
And what is a good source to learn about red light therapy. I’ve never heard of this.
Thanks again ❤️❤️❤️
Hi Joyce, the best way to learn about red light is to read this book:
https://www.amazon.com/Ultimate-Guide-Light-Therapy-Near-Infrared/dp/1721762825/ref=sr_1_1?keywords=The+Ultimate+Guide+To+Red+Light+Therapy&qid=1687128886&sr=8-1
This is a good book and will tell you all you need to know. But don’t go to the author’s website because it’s all about selling you supplements and not red light.
As for LDN, I have a lot to say about that and I won’t be able to type it all in until tomorrow. I promise I’ll give you the complete run down on how I do LDN in another reply tomorrow. See you then.
Oh, and this is a good red light:
https://platinumtherapylights.com/products/biomax-rlt?variant=15666982649922
Cheaper ones don’t work.
Joyce, that red light I linked to is very good, but expensive. It took me a year to go from standing 3 feet away from the light (no clothing) for one minute, to standing one foot away from the light for 10 minutes (5 on the front, 5 on the back) twice a day. If you get too much, you’ll get a small headache for a couple of hours after. Don’t increase too fast, don’t do more than 10 minutes twice a day. Too little does nothing, too much does nothing. Keep it in that range. These lights have five different wavelengths and no UV. Cheaper ones don’t have these wavelengths.
Ann1 Appreciate the detailed information regarding your regimen. Looking forward to hearing how you approach LDN. Thank you.
Me too – thanks Ann11
Joyce and Karyn and Cort
Naltrexone is a drug that was developed a long time ago to treat addictions. They don’t know exactly how it works, but it interferes with the cravings and the “high” that users feel. For this purpose, patients are given 50mg to 100mg once or twice a day. It was not a successful drug because the side effects can be severe. So the company let the patent lapse.
Low Dose Naltrexone (LDN) was developed in the 1980’s. From the LDN Research Trust in the UK:
https://ldnresearchtrust.org/
“Research into the effects of LDN began in the 1980s by Dr. Ian Zagon and Dr. Patricia McLachlan at Penn State. Dr. Bernard Bihari, in New York was the pioneer of using LDN in clinical practice. In the mid-1980s he was using it to treat HIV in his patients. His patients were taking Naltrexone for their opioid addictions and as he weaned them off it he noticed positive side effects with other conditions and symptoms.”
“LDN is a competitive opioid receptor antagonist. At the standard dose, naltrexone blocks the effects of both the endogenous opioids, which are in endorphins and pharmaceutical opioids. LDN is a pure antagonist, which is vital to know as a lot of people think it is a controlled medicine, narcotic or an opioid.”
“LDN is an antagonist at the OGF receptors and there are OGF receptors on a wide range of cells in the body. When we talk about low dose naltrexone we mean doses that are a 10th or less of the standard dose of Naltrexone. Most of the research studies have used 4.5mg per day. Doses range from 0.001mg – 16mg in clinical practice.”
“Endorphins are your natural peptides produced in many cells which regulate cell growth, including your immune cells. Many patients who have autoimmune disease tend to have low levels of endorphins, Met-enkephalin, aka opioid growth factor (OGF), an important immunomodulatory. Opioid receptors are in the central and the peripheral nervous system, the GI tract, and on lymphocytes. By using LDN you receive a brief blockade, creating a rebound effect giving you more endorphins, including OGF, and increased production of the OGF receptors.”
It is this rebound effect that helps MCAS. That’s why you take it at bedtime. LDN blocks the receptors overnight and then in the morning when it wears off, you have a burst of endorphins and other transmitters. You feel good and your body begins to heal. This effect lasts 17 hours. Then you take more the next night.
This is a prescription drug in a tablet or capsule. People who take LDN usually get a compounding pharmacy to make up capsules of LDN. The usual procedure is to start at 1.5mg and work up. DO NOT DO THIS. This dose is much too high to begin with and you’ll feel awful. You must begin with a tiny amount, maybe 0.25mg or even lower if you’re new at this.
I made two mistakes when beginning LDN. First, I listened to the physician and tried 1.5mg. All my symptoms got worse. So….more literature review. Started over with 0.25mg and no side effects. Good. But also, no help, either. So, week by week I raised the dose to 3mg. Good result, but I still had reactions – the kind of reactions I get from high histamine food. I found out that many people react to the other chemicals in the capsules, stabilizers, flow agents, etc. So I got my pharmacy to make it into a topical cream. That worked and I got the dose up to 6mg, which I like. Unfortunately, I felt like a walking slime ball because I had greasy arms and legs from rubbing this stuff on. That was mistake number two.
More searching. Then I found a description somewhere of another procedure. Having the pharmacy make up some special preparation of LDN is expensive. The regular 50mg and 100mg tablets are cheap because there is no patent. Any company can make them and sell them.
So here’s how it works. Get your doc to prescribe the 50mg tablets. I take two tablets (I could just as easily use one 100mg tablet instead) and grind it up with a mortar and pestle (get one from Amazon that people use for grinding up spices). Do this until it is a fine white powder. Now get some distilled water that you bought from the grocery store. Use a 20cc plastic syringe that you can get from a veterinary supply place (any farm store has these). No need for a needle, just use the syringe. Draw up 16cc of distilled water and squirt it into the powder in the mortar. Mix it up with the pestle (the thing you hold, not the bowl) until it’s a cloudy liquid. Pour this liquid into a clean dropper bottle (again, amazon is your friend) and cap it with the dropper. The dropper needs to be marked in increments up to 1cc. So these are little bottles, about 30cc size.
Now let it sit in the fridge overnight and all the white residue will settle to the bottom in a layer of sludge. This sludge consists of all the excipients, the chemicals that they use to make the naltrexone into tablets. The naltrexone itself is water soluble, the excipients are not. The water above the sludge is where your naltrexone is. That water is pure naltrexone. Now you’ve got a dropper bottle with about 15cc of 100mg of naltrexone.
One cc of this clear liquid (one milliliter, or mL is the same as one cc) will have 6mg of naltrexone in it. And you won’t be ingesting any excipients. If you’re new at this, start with one drop right at bedtime. Then work up each week – week two, two drops, week three, three drops, etc. If you feel awful, back off and give it another week at the lower dose. It took me six months to work up to a full cc of clear naltrexone every night at bedtime.
You may stop at 3mg. You may stop at 4.5mg. The most common dose is 4.5, but I have read that some people take more. I have also read that some people take it in the morning, but I have no idea how that could possibly work. Some people take it morning and night, but I don’t think I would try that. It’s up to you, but be careful. Taking too much makes you really feel like crap.
I have no idea how 6mg one day a week could be helpful at all, because it’s gone in 6 hours. Bedtime is best, I believe.
The LDN Research Trust has much more information about this, so follow the link above.
Any questions, class?
Ann1,Thank you for all of the detailed information. It is very much appreciated.
Cort Johnson, Your dedication to providing PWME,and those who care for them access to information regarding ME/CFS treatment and research is appreciated and your work is valued. Thank you.
My PWME (USA) started with .5 oral administration of LDN. The mixture was made by emptying a capsule, from a regular pharmacy, into tap water and letting it sit for an hour and then using a syringe to dose the medicine. No instruction was given to not use the cloudy part of the liquid. This makes me believe that they were getting filters in the dosage which is not optimal as they have MCAS. They have spent nine months using the above solution and working up to 6 ml capsules which was started in April of this year. The capsules are made with microcrystalline cellulose ( not organic) and silica from a compounding pharmacy with little results. I have three questions regarding this:
First is regarding the prescribing physician. Do they not prescribe the same routine at our clinic in CA? I understand there is a vast difference in how physicians around the world treat ME/CFS but wonder if there is a standard protocol with major contributors to ME/CFS treatment here in the USA.
Second, could the previous dosages have not worked appropriately for the PWME who has MCAS as well?.
Third, if we were to find a compounding pharmacy which will work to produce the Naltrexone specifically to avoid MCAS triggers should our PWME start back at .5 or go right to the present 6 mg?
I have been doing quite a bit of research about ME/CFS and LDN. I find nothing that answers this question. After researching ME/CFS and all that is or may be viable for treatment I have learned that before asking a physician it is best to have information which can be vital in helping to know the right questions to ask and what to look for in answers.
Thank our for sharing your knowledge concerning this. Blessings to you both!
Karyn, thanks for these questions, I’m sure you’re not the only one who wonders these things. I don’t think there is any standard protocol for dosing of LDN because it is not accepted by most of the medical community. We are on our own here.
The best information I have found has come from the LDN Research Trust in the UK:
https://ldnresearchtrust.org/
Here are the results for searching for “Chronic Fatigue Syndrome”
https://ldnresearchtrust.org/search-condition?field_type_of_video_target_id=397
They don’t have a search for ME. There is lots of information there that might help.
Secondly, ingesting the cloudy liquid might not be optimal for absorption. Some people are not bothered by the excipients. I am, so I go through the procedure outlined above so that I only ingest the LDN and not the white sludge. It takes overnight for all the white powder to settle to the bottom.
Third, if you change to only using the clear liquid, I do not believe that it will be necessary to reduce the dose. When you use it all, you are getting the full 6mg dose plus the excipients. If you remove the excipients, you will still get the 6mg dose. I would try it.
If you try it, please post here so we can all benefit from your efforts. Thanks for asking these important questions!
Dr Chia mentioned to me during my last visit that extended courses of Remdesivir and Paxlovid have been found to be helpful, but MECFS patients are not able to get an extended course, due to emergency use restrictions on those drugs. There is supposed to be a trial underway w/ MECFS patients but I can’t recall who he said is running it.
This is so very encouraging. My daughter has been plagued with intense MCAS for the last 5 years and we have tried everything and anything to help with her flairs, reactions and bouts. She has numerous add-on conditions mentioned in your article, POTS, gastroperesis, to name a couple of the major issues, but numerous others accompany the MCAS, including ME/CFS.
She recently developed neuropathy in her calves and feet. We were able to find some relief through a treatment called Scrambler Therapy which uses electrode placement and electric pulses to activate the affected nerves. In the process we found out about a Clinical Trial being administered by UCLA Westwood that uses TMS to treat ME/CFS, essentially it uses a handheld wand that acts like a handheld MRI. We are doing an EEG next week and then start the Trial treatments in early July.
I had mentioned to Dr. Thomas Strouse head of the TMS program at UCLA that perhaps this magnetic stimulation process might have a positive effect on the MCAS, he agreed due to the fact that this is a Trial and anything is possible. My daughter’s GI doc, Dr. Phillips at UCLA Porter Ranch has been a huge supporter of my daughter and her MCAS ailments and to a degree we have all been on a bit of an adventure to find relief for my daughter. Dr. Phillips has been administering a bi-weekly Xolair injection that has been extremely helpful. BTW, my daughter is also currently bedridden and on TPN and IV fluids.
I have read your information with joy, thank you for shedding light on this disease which has to a large degree been discounted as “all in your head” by hundreds of physicians that we have seen who either aren’t interested in or familiar with this circuitous group of ailments.
Thank U for this EXCELLENT post! One of the best sources of info about MCAS imho. I reposted to my Facebook Histamine Intolerance,DAO Deficiency, MCAS group.
You wrote “Coming up – the conclusion of Amber Walker’s story. We’ll watch Amber as she gets sicker and sicker, develops chemical sensitivities, neurological problems, an ME/CFS/FM-like condition, etc., but ultimately recovers – not all the way – but a large part of the way using a variety of techniques, including several that are not directly MCAS-related and one, in particular, that I had never heard of before, which made a huge difference” where can I access the second part of her story? Thank U
🙂
https://www.healthrising.org/blog/2023/06/26/ambers-long-mcas-pots-mcs-me-cfs-recovery-story/