Mast Cells
IS CFS A Mast CELL DISORDER
Is ME/CFS a mast cell disorder
Excellent mast cell blog from England lady
https://mastcellblog.wordpress.com/2013/11/12/canary/
Mitochondria were, millions of years ago, bacteria which became symbiotic with our own cells. Mitochondria are responsible for cellular energy and it has always been thought never left the cells which housed them. If they ever were to leave the cells, the body would still see them as the bacteria they once were and mount a massive immune and inflammatory response.
However Dr Theoharides’ research has shown that mitochondria can, in fact, move[6]. When mast cells activate they cause mitochondria to break down and move away from the centre of cells to the outside of the cell surface. The immune system then recognise these as bacteria and goes on the attack (fluey symptoms anyone?!), producing inflammation and further mast cell de-granulation. And I’m assuming that if the mitochondria leave the cell, the cell’s ability to produce energy goes with them – no wonder people with M.E. are all exhausted!
Mast Cells & the Central Nervous System
Extensive crosstalk exists between nerves and mast cells. The role of this bidirectional communication between mast cells and nerves appears to be multifactorial. The communication with the nervous system allows the peripheral and central nervous systems to be involved in the regulation of defence mechanisms, inflammation, and response to infection. [11].
When mast cells are activated they also produce neurotransmitters such as histamine and serotonin, which alter mood and appetite as well as regulating the circadian rhythm and orchestrating sleep and wakefulness.
Mast cells are implicated in Multiple Sclerosis, and M.E. shares many symptoms with M.S.[4]
- Mast cells can be activated by viruses, parasites, infections, vaccinations, trauma, environmental toxins such as pesticides, exposure to moulds and by stress.
- Mast cell activation causes the energy-producing mitochondria to ‘vacate the building’.
- Mast cells talk extensively to the nervous system. Mast cells are present within the CNS, produce neurotransmitter mediators, and live next to sensory nerves.
- Mast cells are abundant in the part of the brain which contains the hypothalamus and the sensatory Diencephalon.
- Mast cells live within the blood-brain barrier and, when activated, cause leaky blood vessels which allow circulating immune chemicals to enter the brain.
Mast cell activation can cause just about every symptom experienced by people with M.E., including:
I started a low histamine diet 9 months ago, and now take both H1 and H2 anti-histamines daily. After having back pain of unknown cause for over 30 years I can honestly say my back pain has resolved by about 60%!
- Increasing M.E. symptoms at menstruation and menopause:
Mast cells are known to express estrogen receptors [13] and can be activated by estrogens, which enhance degranulation and mediator release. In other words, menstruation causes mast cell activation. Changes in estrogen levels are also linked to migraine attacks in women, perhaps due to cerebral mast cell interaction [14].
There is an alarming trend in the M.E. world for researchers to be studying ‘fatigue’ and energy production when the fatigue of M.E. is a by-product of immune dysfunction, just like it is when you get the flu. The fatigue experienced when you have flu is just a symptom of the disease, not the cause. It all feels like a huge waste of time and resources and will lead to yet more blind alleys (remember I’ve been following research into M.E. for 20 years now).
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After a decade of being bedridden I never thought I’d be driving, walking, owning a dog, writing a blog, have moved house, be winning awards for photography……..or be happy. In the bleak, dark, wee hours of my worst nights I never imagined for a second that I’d be living a rich, fulfilling, joyful life……….yet here I am. Anything is possible
I don’t belong to Twitter or Instagram, Snapchat or WhatsApp and I only have 80 Facebook friends (I consider a ‘friend’ to be someone I actually know, not some random stranger I met online last week). I’m not on any groups or forums. I don’t have time. I’m too busy having fun and trying to remain a fully rounded human being despite my physical and mental limitations. I’m too engrossed smelling the early spring flowers, watching the clouds drift by in the sky and cherishing the sound of the returning Swifts and Lapwings. In other words, belonging to the real world.
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The balance of knowing enough about my diseases to manage them (there is no magic cure or even effective treatments) and inform medical staff about them, yet not so much that they rule my every waking moment works for me, and means that my life is lived in tandem with my illnesses, not consumed by them.
Allergy Drops Fight Diabetes (Ketotifen)
Zaditen drug name
Ketotifen and Leaky Gut
http://forums.phoenixrising.me/index.php?threads/ketotifen-for-leaky-gut.15114/page-2
Ketotifen Protocol
http://www.collegepharmacy.com/images/download/Woeller_Ketotifen_Protocol.pdf
Ketotifen works by inhibiting certain substances in the body that are known to cause in ammation. It is an antihistamine that reduces the harmful effects of histamine and promotes the healing of the intestinal wall. Ketotifen is not commercially available in the United States and must be compounded by a compounding pharmacy.
+ Is ME CFS a mast cell disorder page 12
Getting the flush might use up histamine and provide some window until it gets built back up again in the mast cells.
There's a long-term masto patient who uses this technique. He purposely eats something that he knows triggers his mast cells, feels like crap for a day or two, and then has a few good days while the mast cells slowly building up their mediators again. I have always noticed that my worst periods of illness are followed by my best, so it sort of makes sense
-Also, I think that by breaking the vicious cycle of inflammation, histamine gets reduced as a consequence.
-Well, if you get the leaky gut repaired, then maybe you'll find that many, many other things improve. Getting poisoned every time that you eat can wreak so much havoc, aside from CFS.
- Some people also have good results from taking Gastrocrom before each meal since just the act of eating, no matter the food, releases histamine. Gastrocrom is used in MCAS, leaky gut syndrome, Crohn's, etc. -
+ Is ME CFS a mast cell disorder page 15
-Ketotifen: Once on it, I completely eliminated Benadryl, Gastrocrom and a few other meds from my routine. I never had another anaphylactic reaction and never had to use any of the potential rescue meds prescribed for me. I went from tolerating 4-5 foods to now close to fifty!
possible!)
It was interesting to read about Ketotefin b/c by far that has been one of the most beneficial meds I have taken (and continue to take) in this entire process. You can only get it from a compounding pharmacy in the U.S. and my MCAS doc prescribed it for me on my first visit. Once on it, I completely eliminated Benadryl, Gastrocrom and a few other meds from my routine. I never had another anaphylactic reaction and never had to use any of the potential rescue meds prescribed for me. I went from tolerating 4-5 foods to now close to fifty!
I still take Zyrtec, Quercetin, Neuro Protek & Daosin but by far the Ketotefin is the most helpful for me.
-I have developed MCAS in the time since this thread was started (was reading it with detached interest back then). For me it is the end result of immune dysregulation caused by M,E/Lyme/infections, not the beginning point.
Treating my MCAS symptoms, which are sort of controlled at the moment has made no difference to my M.E symptoms, although it has helped my breathing issues that had confounded Drs for some time, and my anxiety levels are much reduced these days.
My current dx are: EDS III, MCAS and M.E as a result of longstanding untreated Lyme and co infections. Far from getting better from M.E by treating the MCAS, the MCAS just makes it impossible to treat the treatable aspects of my illness.
-"Dysautonomia International and the researchers we work with who study POTS are very aware of the mast cell links to POTS.
There are some researchers who suspect that the autonomic dysfunction itself is causing the mast cell problems in POTS patients, since the autonomic nervous system regulates the immune system, including mast cell functions. Then once the mast cell symptoms start, they only make the autonomic symptoms worse.
We had a speaker at our national conference discussing this in July, and it looks like the NIH found a gene associated with this, at least in some patients. There is a ton of research going on right now related to immune/autonomic interaction. Dysautonomia International has taken the lead on getting more POTS/MCAS specific research going. We are working on a POTS/MCAS specific study right now with researchers in California, but it still needs IRB approvals before we can announce it and begin recruiting.
-When you are digging into the research on these issues, look at adrenergic receptors on mast cells and other immune cells. This might be the key to what is degranulating the mast cells in POTS patients.