ME/CFS is a mast cell disorder (hypothesis)

[fozzaw]

​

is it possible to make liposomal quercetin?

I think it's been mentioned on the DIY-LET group but I don't know the details.

 

[rachel]

This is a non-exhaustive list of symptoms associated with mastocytosis and/or mast cell activation syndrome:

• abdominal pain
• intestinal cramping and bloating
• diarrhea and/or constipation
• nausea
• non-cardiac chest pain
• Helicobacter pylori-negative gastritis
• malabsorption
• oropharyngeal burning pain
• aphthae
• cough
• asthma-like symptoms
• dyspnea
• rhinitis
• sinusitis
• conjunctivitis
• difficulty in focusing
• hepatomegaly
• splenomegaly
• hyperbilirubinemia
• elevation of liver transaminases
• hypercholesterolemia
• lymphadenopathy
• tachycardia
• blood pressure irregularity (hypotension and/or hypertension)
• syncope
• hot flush
• headache
• neuropathic pain
• polyneuropathy
• decreased attention span
• difficulty in concentration
• forgetfulness
• anxiety
• sleeplessness
• organic brain syndrome
• vertigo
• lightheadedness
• tinnitus
• urticaria pigmentosa
• hives
• efflorescences with/without pruritus
• telangiectasia
• flushing
• angioedema
• abnormal bleeding
• muscle pain
• osteoporosis/osteopenia
• bone pain
• migratory arthritis
• interstitial cystitis
• fatigue
• asthenia
• fever
• environmental sensitivities

This list was compiled from table 3 on the freely available paper entitled: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options".

Based on symptomatology comparison, I think ME/CFS begs to be defined as a mast cell disorder.

Hi,
I also think cfs/me connects to allergic response of the body or/and the mentioned elements interfers to body systems but a real and a deep solution has to solve the toxins problem inside the body.

Did you try the solutions recommended in the article?

 

[nanonug]

I also think cfs/me connects to allergic response of the body

Well, mast cell activation/degranulation is responsible for allergic response, after all!

Did you try the solutions recommended in the article?

I have yes, with some success. Right now, however, I am preparing to do some of the mast cell related tests and I am therefore off of any drugs and supplements that might interfere. As a consequence, I have been very tired and with terrible brain fog.

 

[rachel]

Well, mast cell activation/degranulation is responsible for allergic response, after all!
I have yes, with some success. Right now, however, I am preparing to do some of the mast cell related tests and I am therefore off of any drugs and supplements that might interfere. As a consequence, I have been very tired and with terrible brain fog.

Yes, I know they are responsible for that.
Do the drugs mentioned in the research need prescription?
Good luck.

 

[nanonug]

Do the drugs mentioned in the research need prescription?

Some of them do, such as Gastrocrom, for instance. However, H1 and H2 blockers are generally available over the counter.

 

[camas]

I have yes, with some success. Right now, however, I am preparing to do some of the mast cell related tests and I am therefore off of any drugs and supplements that might interfere. As a consequence, I have been very tired and with terrible brain fog.

nanonug,

Hope your testing goes well and that you can get back on your regimen soon.

 

[voner]

I was doing some research on licorice and stumbled across this research paper.

"""""""""

Isoliquiritigenin Selectively Inhibits H2 Histamine Receptor Signaling.


Dong-Chan Kim, Se-Young Choi, Sun-Hee Kim, Bong-Sik Yun, Ick-Dong Yoo,
Nanga. Ravi Prakash Reddy, Ho Sup Yoon, and Kyong-Tai Kim

accepted May 3, 2006

ABSTRACT
Isoliquiritigenin, one of the major constituents of Glycyrrhiza uralensis (licorice), is a natural pigment with a simple chalcone structure 4,2,4-trihydroxychalcone. In this study, isoliquiritigenin showed selective H2 histamine receptor (H2R) antagonistic effect and remarkably reduced several H2R-mediated physiological re- sponses. Preincubation of U937 and HL60 hematopoietic cells with isoliquiritigenin significantly inhibited H2R agonist-induced cAMP response in a concentration-dependent manner without affecting the viability of cells. Isoliquiritigenin also blocked the binding affinity of [3H]tiotidine to membrane receptors in HL-60 cells. Isoliquiritigenin did not affect the elevation of cAMP levels induced by cholera toxin, forskolin, or isoproterenol, indicatingthat the action site of isoliquiritigenin is not Gs protein, effector enzyme, adenylyl cyclase, or 2-adrenoceptor.

Isoliquiritigenin affected neither H1R- nor H3R-mediated signaling. In molecular docking studies, isoliquiritigenin exhibited more favorable interac- tions with H2R than histamine. Isoliquiritigenin prominently inhib- ited H2R selective agonist dimaprit-induced cAMP generation in MKN-45 gastric cancer cell. Moreover, isoliquiritigenin reduced gastric acid secretion and protected gastric mucosal lesion for- mation in pylorus-ligated rat model.

Taken together, the results demonstrate that isoliquiritigenin is an effective H2R antagonist and provides the basis for designing novel H2R antagonist.
"""""""
The entire Paper can be found here:

http://www.ncbi.nlm.nih.gov/pubmed/16675659

 

[Questus]

Hi,
I posted this Youtube video of Dr. Grubb being interviewed by a patient with Hyperadrenergic POTS on the Pots forum, and Sushi suggested I post it on this thread as well.

Bright Blessings..

 

[SaraM]

This is very interesting. My alkaline phosphatase levels are always lowish.



Please, keep us posted! Thanks!

Mine is also always low and out of range. I have to take 100 mg zinc daily to keep it in range ,but it still remains low.

 

[Anne LiConti]

How many symptoms on that list do you have to have to be considered having MCAS?

 

[nanonug]

How many symptoms on that list do you have to have to be considered having MCAS?

There are no hard and fast rules. The good thing about MCAS, however, is that there is affordable testing available. Would you mind enumerating your symptoms? That would gives a "feel" for whether you might have MCAS or not.

You may also want to look at a presentation on Systemic Mast Cell Disease. Page 4 illustrates how MCAS may manifest itself and the rest of the document is full of case studies.

Let us know if you have any questions.

 

[Jacque]

This is a non-exhaustive list of symptoms associated with mastocytosis and/or mast cell activation syndrome:

• abdominal pain
• intestinal cramping and bloating
• diarrhea and/or constipation
• nausea
• non-cardiac chest pain
• Helicobacter pylori-negative gastritis
• malabsorption
• oropharyngeal burning pain
• aphthae
• cough
• asthma-like symptoms
• dyspnea
• rhinitis
• sinusitis
• conjunctivitis
• difficulty in focusing
• hepatomegaly
• splenomegaly
• hyperbilirubinemia
• elevation of liver transaminases
• hypercholesterolemia
• lymphadenopathy
• tachycardia
• blood pressure irregularity (hypotension and/or hypertension)
• syncope
• hot flush
• headache
• neuropathic pain
• polyneuropathy
• decreased attention span
• difficulty in concentration
• forgetfulness
• anxiety
• sleeplessness
• organic brain syndrome
• vertigo
• lightheadedness
• tinnitus
• urticaria pigmentosa
• hives
• efflorescences with/without pruritus
• telangiectasia
• flushing
• angioedema
• abnormal bleeding
• muscle pain
• osteoporosis/osteopenia
• bone pain
• migratory arthritis
• interstitial cystitis
• fatigue
• asthenia
• fever
• environmental sensitivities

This list was compiled from table 3 on the freely available paper entitled: "Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options".


Based on symptomatology comparison, I think ME/CFS begs to be defined as a mast cell disorder.

Chronic Fatigue and Mast Cells - Presentation by Theoharides

Looked through they symptoms and didn't know what MANY of them even were!! I counted 23 that I did have.. Yes I have read about the MAST cell theory, and the B Cell theory, and the Entero virus theory, and the Bio Toxin Theory, LYME ..and and and and... Now I just think I fall in to the MENTAL category!!!!!!

So if it is Mast Cell - is there a treatment for this??

 

[nanonug]

I counted 23 that I did have

OK, I guess it would be silly on my part to tell you that there is a good chance that you have MCAD, don't you think?

So if it is Mast Cell - is there a treatment for this??

The good thing about MCAD is that: 1) it is testable and, 2) it is treatable!

How about starting with some testing? There is a mast cell specialist at Stanford. How far way are you from there? His name is Jason Gotlib M.D., M.S. In any case, any decent immunologist should be able to order three tests: serum tryptase, 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2. You may also want to take this with you, written by a mast cell expert (Dr. Afrin): MCAS Primers for Physicians.

Good luck and let me know if you have any questions!

 

[xrunner]

So if it is Mast Cell - is there a treatment for this??

There are a number of herbals that can shut down the inflammatory cascade/cytokines like the ones mentioned in the videos (similarly to the Nuroprotek that Theoarides has patented).
Some are very effective at that in my experience and will bring a lot of relief to symptoms including fatigue but it's no cure, they won't remove the underlying cause(s) whatever they are.
Then there's the question of using this approach long-term, meaning several years, and what effects this kind of immuno-modulation might have which nobody knows for sure.

 

[Jacque]

I am seeing Dr. Kogelnik and he is an immunologist along with many other Initials... He is convinced this is a viral illness hidden in the B cells... I will run the Mast Cell theory by him... I am so tired... I am just theory'd out! I will look at the info.. My Doc was originally at Stanford and just started his clinic Open Medicine ... to treat CFS/ME and is involved with the most informed ME docs... i am guessin if this was impt... he would be suspecting it ... unless he has his head in the sand and being very myopic with the treatment of Rituxan.

 

[nanonug]

i am guessin if this was impt... he would be suspecting it ... unless he has his head in the sand and being very myopic with the treatment of Rituxan.

Problem is, very few MD's are aware of Mast Cell Activation Syndrome. Most know about mastocytosis and that it is rare so they quickly discount mast cell issues.

 

[Jacque]

Problem is, very few MD's are aware of Mast Cell Activation Syndrome. Most know about mastocytosis and that it is rare so they quickly discount mast cell issues.

Have you been diag with this disorder??

 

[nanonug]

Have you been diag with this disorder??

I am currently in the middle of testing. Should have results in a week or so. I will share.

 

[Jacque]

Well make sure to keep me posted will you??? Good luck!!

 

[wastwater]

Do mast cells have anything to do with basophils and eosinophils ive had high on both but did suffer allergies too.