Author Topic: Mast Cell Activation Syndrome  (Read 129223 times)

Muon

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Re: Mast Cell Activation Syndrome
« Reply #380 on: July 04, 2023, 03:47:50 PM »
The first year and this year, the problem arose when the weather became warmer


Muon

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Re: Mast Cell Activation Syndrome
« Reply #382 on: July 24, 2023, 04:56:07 PM »
Food for thought: Do certain mutations in mast cells define POIS?

Video: Root Causes & Treatment of Mast Cell Disease

Treatment comes down to trial and error in finding personal key(s) to the molecular lock(s) plus recognizing and avoiding triggers.
« Last Edit: July 24, 2023, 05:40:08 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #383 on: September 30, 2023, 08:16:37 AM »
News letter

Hi,

On August 14th, Drs. Afrin and I, with one of our close collaborators, Dr. Gerhard Molderings (an internationally recognized expert in mast cell activation syndrome (MCAS) based at the University Hospital of Bonn), published an article in the journal Diagnosis discussing challenges in accurately interpreting results of tests in MCAS patients for levels of antibodies which mark for various infectious or autoimmune diseases.

While positive antibody tests in MCAS patients may not always indicate the presence of associated diseases, the immune system's chaotic response often leads to the production of inappropriate antibodies. Conversely, the immune system may fail to produce antibodies against actual infections, resulting in false negative results. Unfamiliar clinicians may misinterpret these results, leading to unnecessary treatment.

In this paper

Learned cautions regarding antibody testing in mast cell activation syndrome

we emphasize that understanding the significance of antibody tests in MCAS patients is best achieved by observing patterns of results over time. These patterns differ when MCAS is present, and alternative testing methods may also be useful for accurate diagnosis.

In critical situations, immediate treatment may be necessary based on a positive antibody test. However, in most cases, patients should work closely with their doctors to retest over time and establish a consistent pattern. This approach saves patients from unnecessary treatment or potential misdiagnoses.

These complexities with interpreting antibody test results are just one aspect of the intricate nature of MCAS.

To your best health,
Dr. Tania Dempsey

Muon

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Re: Mast Cell Activation Syndrome
« Reply #384 on: October 07, 2023, 12:07:47 PM »
It’s been 2 weeks now that he’s going through pois. He said he’s feeling bad just by drinking water

Muon

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Re: Mast Cell Activation Syndrome
« Reply #385 on: October 12, 2023, 09:13:12 AM »
News letter

Good morning,

Did you know that hormone imbalance is one of the top issues associated with Mast Cell Activation Syndrome (MCAS)?

Do you have any of these top symptoms of hormone imbalance?

Unexplained weight gain or weight loss
Fatigue
Higher-than-normal blood cholesterol levels
Depression or anxiety
Slow heartbeat or rapid heartbeat (tachycardia)
Extreme thirst and frequent urination
Hair loss
Excess body hair
Menstrual issues
Low libido

These are a few indicators that you might have a hormonal imbalance. Dysfunction of mast cells could exacerbate hormonal problems, but hormones can also act as a trigger for your mast cells.

If you have any of those or any other hormonal imbalance symptoms, then watch my interview with Beth O'Hara now.

https://www.youtube.com/watch?v=DQEHG1zvcJE

In this interview, you'll learn more about:

The most critical hormones in MCAS
How hormonal imbalances affect MCAS
What is a Psycho-Neuro-Endocrine-Immune condition?
Is MCAS considered a Psycho-Neuro-Endocrine-Immune condition?
The important order of operations for balanced hormones with MCAS
Dr. Dempsey’s top tips for rebalancing hormones

Want to learn more?

Join us at the Mastering Mast Cell Activation Summit, where you’ll learn all about MCAS symptoms, triggers, coexisting conditions, and what you can do now to start addressing your symptoms.

Find your path to healing when you attend this complimentary, online event!

Dr. Tania Dempsey

P.S. When you register for Mastering Mast Cell Activation, you’ll also unlock early-access interviews, complimentary guides and helpful eBooks exploring MCAS and how to get started on your healing journey.
« Last Edit: October 12, 2023, 09:15:35 AM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #386 on: October 18, 2023, 10:49:23 AM »
Connective tissue mast cells store and release noradrenaline (2023)
https://jps.biomedcentral.com/articles/10.1186/s12576-023-00883-3

Our findings indicate that mast cells may play a role in regulating noradrenaline concentration by storing and releasing it in somatic tissues.

In addition to noradrenaline, mast cells take up various bioactive substances. For example, in the 1970s, it was reported that mast cells take up serotonin (5-hydroxytryptamine; 5-HT) into the cell [11]. In this study, we confirmed that noradrenaline-storing CTMCs express Oct3 (Fig. 5), which has been reported to take up histamine, serotonin, dopamine, and adrenaline into the cell, as well as noradrenaline

Muon

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Re: Mast Cell Activation Syndrome
« Reply #387 on: November 06, 2023, 11:29:14 AM »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #388 on: November 14, 2023, 05:18:08 PM »
Mast Cells in the Autonomic Nervous System and Potential Role in Disorders with Dysautonomia and Neuroinflammation (2023)

Conclusion

The available evidence indicates that MC can affect ANS via a variety of actions such as activation of microglia and astrocytes, BBB disruption, cardiac peacemaking, circadian clock, coronary artery constriction, HPA axis regulation, neuroinflammation, neurosensitization and vascular tone control (Table 3), thus potentially contributing to a number of dysautonomias and neuroinflammatory conditions with dysfunctional homeostasis.

Key Messages

Mast cells are located close to blood vessels and neurons.

Mast cells secrete many vasoactive and neurosensitizing mediators without histamine or tryptase.

Mast cells can affect and be affected by the autonomic nervous system.

Mast cells could contribute to dysautonomias and neuroinflammation.

There is a need for development of effective inhibitors of mast cell activation.
« Last Edit: November 14, 2023, 05:20:47 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #389 on: November 26, 2023, 06:25:13 AM »
I recently received the results of an evaluation that included my Chromogranin A (CgA) value, and I wanted to update you on it. It turns out that my CgA level is [L225 ng/mL], which is higher than normal.



Gogo

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Re: Mast Cell Activation Syndrome
« Reply #392 on: December 28, 2023, 06:05:55 AM »
Hello all the members,

First of all I'm very happy to find a forum like this, because I'm sure that it's through sharing and advancing research that we'll make progress on the road to recovery.

I've had POIS for at least 5 years now, I'm 25 and this disorder is very difficult to live with on a daily basis, but I fight every day to find solutions.

I've personally made progress with natural solutions, although that's far from enough, but my research leads me to believe that POIS is a kind of transient immune disorder, I've researched mast cell activation syndrome and very similar symptoms are observed in POIS, linked to the release of substances like histamine and other potentially neurotoxic substances... during ejaculation.

I don't know exactly how this is possible, but it turns out that turmeric is the substance that has helped me most with POIS, I help myself as much as I can with it, but it's a sign that something isn't working properly in our bodies at the time of ejaculation. Turmeric has very strong anti-inflammatory and antioxidant properties, it helps me with all the symptoms and also the depressive aspect of POIS which is difficult to cope with. I also take magnesium, which soothes me and reduces allergic rhinitis following ejaculation. Magnesium has a stabilising effect on allergies and histamine too. This shows that there could be a drug resulting from research with these same properties, which could temporarily prevent mast cell degranulation to avoid a potential immune cascade, a hypothesis that I support, but the problem is very complex.

I have many hypotheses about POIS (immune anomaly, hormones, vegetative storm...), unfortunately I come up against the lack of knowledge about this disease and yet I clearly don't think I'm the only one, I can see that many people suffer from it on the forum: POIS Center.

I was able to consult a neurologist in France who listened to me and he thinks that this problem is due to a vegetative storm, a neuro-vegetative disturbance that leads to a multitude of symptoms such as stress, anxiety, depression, allergies, etc. I agree with his theory but I'm open to anything. I agree with his theory, but I'm open to all hypotheses, and I'd like to see him again soon to discuss it with him.

I wanted to know what stage research into POIS has reached in the world? I've seen that a new study has been launched by the NORD organisation in the USA at the University of Nebraska Lincoln. Has this study already started? Is it possible to get in touch with Dr Nicole Prause and Dr Tierney Lorenz to discuss our condition?

Thank you for everything, your presence on this forum is already a beacon of hope, don't give up and happy holidays!

demografx

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Re: Mast Cell Activation Syndrome
« Reply #393 on: December 28, 2023, 09:59:18 AM »

…I wanted to know what stage research into POIS has reached in the world? I've seen that a new study has been launched by the NORD organisation in the USA at the University of Nebraska Lincoln. Has this study already started? Is it possible to get in touch with Dr Nicole Prause and Dr Tierney Lorenz to discuss our condition?


Welcome to POISCenter, Gogo!

Our POIS Research Study has gone through all necessary approvals and is in the final processing stage.

The study will now also include the University of California, Los Angeles (UCLA) as a major Science partner.

NORD - National Organization for Rare Disorders - - is the supervising organization for our upcoming UNL (University of Nebraska - Lincoln) & UCLA POIS Research Study, funded by all of us here at POISCenter!
https://poiscenter.com/forums/index.php?topic=3006.0
« Last Edit: December 28, 2023, 04:34:20 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Gogo

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Re: Mast Cell Activation Syndrome
« Reply #394 on: December 28, 2023, 12:16:04 PM »
Thank you very much for your reply, this new [POIS] study represents a ray of hope for our community, and we'll be following it closely. It's also great news that the University of California at Los Angeles is a major scientific partner.

Have a nice day
« Last Edit: December 29, 2023, 01:20:19 AM by demografx »

Progecitor

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Re: Mast Cell Activation Syndrome
« Reply #395 on: February 18, 2024, 03:59:23 AM »
The beneficial effect of a mixture of aqueous extracts of eight herbs (chamomile, saffron, anise, fennel, caraway, licorice, cardamom, and black seed) was shown on inhibition of histamine
release from chemically or immunologically stimulated rat peritoneal mast cells. In addition, the clinical study showed a significant improving effect of the herbal tea on patients suffering
from allergic asthma (Haggag et al., 2003).

https://sci-hub.st/https://www.tandfonline.com/doi/abs/10.1080/10408390902773003
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #396 on: March 02, 2024, 02:58:05 PM »
Vitamin C 1000mg - Brand California GOLD Nutrition
Cognitex Elite Pregnenolone - Life Extensions
Cytokine Suppress with EGCG - Life Extensions
Autophagy Renew - Life Extension
Skate Liver Oil - Green Pasture
Iron Bisglycinate - Weightworld
Pregnenolone - 50mg - Life Extensions
DHEA - 25mg - Life Extensions
Megaguard - Microbiome Labs
Fenugreek - Vitabright
Tumeric - Vitabright

Epigallocatechin gallate (EGCG) demonstrated anti-allergic activity in both in vitro and in in vivo models: https://bpspubs.onlinelibrary.wiley.com/doi/10.1111/bph.12138

Agonistic neurosteroids, including pregnenolone, dehydroepiandrosterone and its sulfate (DHEAS), caused rapid degranulation in measurements of ?-hexosaminidase (?-HEX) release from a mast cell line, RBL-2H3. This degranulation was blocked by BSA-conjugated progesterone (PROG-BSA) or 17?-estradiol, both of which are antagonistic neurosteroids. https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1038/sj.bjp.0706213
« Last Edit: March 02, 2024, 03:19:10 PM by Muon »

Ani1946

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Re: Mast Cell Activation Syndrome
« Reply #397 on: March 06, 2024, 09:43:58 AM »
Does anyone have tried ketotifen for long time like 2 months? It takes around 4 weeks for ketotifen to show it's mast cell stabilizing effects.

https://www.reddit.com/r/POIS/s/FTVLE3avnB
I'm sharing the link to the reddit post. In this post op took ketotifen for 3 months and had 80-90% relief. But then he posted one month ago some prolactin connection which I don't find useful. I don't know if ketotifen stops working for him or he still taking it

Ani1946

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Re: Mast Cell Activation Syndrome
« Reply #398 on: March 07, 2024, 05:49:48 AM »
I found a research paper which can explain why niacin help some poisers with theirs symptoms.

https://scholar.google.co.in/scholar?start=70&q=mast+cell+stabilizer+ketotifen&hl=en&as_sdt=0,5&as_vis=1#d=gs_qabs&t=1709807361252&u=%23p%3DIqMTCs15uH4J

Niacin flush cause selective release of prostaglandin e2 and d2 from mast cells. According to study prostaglandin block mast cell activation. So high level of prostaglandins in blood due fo flush may block release of mast cell mediators upon the activation of mast cell from sexual arousal/orgasm.


Muon

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Re: Mast Cell Activation Syndrome
« Reply #399 on: March 07, 2024, 07:41:13 AM »
Niacin flush also releases serotonin from blood platelets. I can imagine someone who is low on serotonin might benefit from niacin flushes.