I Can Tolerate Barely Any Medicines...

[Misfit Toy]

@JPV -I ate a whole apple pie in two days this past weekend...so I guess I do have a problem with sugar!!

It was the best pie....ever.

 

[Misfit Toy]

@JPV-will look at them. I see my CFS doc tomorrow to talk about the MCAS problem.

Thank you! : )

 

[satori]

Have you had the new stool tests which use DNA analysis to identify bacteria? Mine revealed high levels of various bacteria that are correlated with inflammation and colon cancer and low levels with of certain beneficial bacteria. I had to take certain specific probiotics and prebiotics and it greatly improved my gut and ability to tolerate a wider range of foods.

My leaky gut did not heal until I discovered and treated a deficiency of proline and glycine. Theses aminos, along with glucosamine, finally sealed up my gut and also helped improve my tolerance to many foods. I think it also helped my liver improve as well. Glutamine made me worse because my levels were too high and it is excitatory.

Something to check if you have not done so already.

 

[Misfit Toy]

So, after reviewing this....do you all really believe mast cell activation syndrome is due to gut problems because I don't?

I think it's a metabolism and immune system gone awry.

 

[justy]

MCAS seems to be squarely in the camp of immune system gone awry IMHO - KDM thinks in my case caused by years of undiagnosed bacterial infections such as Lyme, but I have others too.

My guts not too bad, food wise I really don't know what is helping me and what is not. Too scared to try tomatoes, but I can eat fish and they are supposed to be High H...who knows.

Sorry to hear you have been feeling suicidal. I have been there and it is truly awful. Last year I developed MCAS after two pills of Doxy. After that Rifampicin to kill Bart made me suicidal and almost psychotic - I had no idea how to handle reality. Now I cant kill the pathogens, everyone keeps telling me you have to or you will get worse, but even my Dr (KDM) agrees we must go VERY slowly with looking at my health problems. He has a lot of patients with MCAS and they all have chornic infections underlying it as far as I can tell.

For me the most important last year and this was to stabilise my reactions so that I can breathe and not be on fire with itching 24 hrs a day, which in itself made me want to end my life - my itching is like a pain and is all over my entire body at once, with the intensity moving from spot to spot in seconds - it felt like hot needles being jabbed in me all over - even up my nose and in my eyes and in my throat. KDM was the only one that understood. When I told him he said yes it was like pain and awful to live with...he wanted to help that symptom right away because he said it is too hard to bear all the time...

Thinking of you today Misfit...

Justy xx

 

[adreno]

So, after reviewing this....do you all really believe mast cell activation syndrome is due to gut problems because I don't?

I certainly think the two are related; the immune system is heavily regulated by the microbiome. Here it's shown that butyrate, a SCFA produced by gut bacteria, inhibits mast cell activation through enhancing histone acetylation. Note that valproic acid (dekapote) is likewise a HDAC inhibitor.

Microbial Metabolite Butyrate Suppresses Murine Mast Cell Activation

1. Hanying Zhang1,
2. Min Du2,
3. Yansong Xue1,
4. Qiyuan Yang2 and
5. Meijun Zhu1,3

1. 1School of Food Science Washington State University Pullman WA United States
2. 2Dept of Animal Science Washington State University Pullman WA United States
3. 3School of Food Science University of Idaho Moscow ID United States

Abstract
Background: Mast cell is known for its roles in mediating food allergy and regulating gut inflammation. Butyrate, a major short chain fatty acid produced by gut microbiota, exerts beneficial effects on intestinal homeostasis. However, its role in modulating mast cell function remain undefined. Methods: Murine mastocytoma P815 cells (P815) or murine bone marrow derived mast cells (BMMC) were treated with sodium butyrate (NaB). The proliferation, cell cycle, apoptosis, degranulation and cytokine secretion were assessed.Results: In P815 cells, NaB inhibited cell proliferation, increased acetylation of both histone 3 and α-tubulin. The growth inhibition effect of NaB is probably through reducing c-kit expression and inducing cell cycle arrest and apoptosis, which is indicated by enhanced annexin V/PI staining, caspase-3 and PARP cleavage. In BMMC, NaB treatment dramatically suppressed FcεRI dependent TNFα and IL-6 release without affecting degranulation. Furthermore, NaB enhanced histone 3 acetylation but diminished mRNA expression of Tnf -α and Il-6, possibly through inhibiting the transcription initiation as revealed by reduced RNA polymerase II binding to the promoters of Tnf-α and Il-6.Conclusions: NaB modulates murine mast cell function possibly through enhancing histone acetylation, which is of importance in developing therapeutics for diseases involving mast cells (NIH R15HD073864).

 

[adreno]

And:

n-Butyrate inhibits Jun NH(2)-terminal kinase activation and cytokine transcription in mast cells.

Diakos C1, Prieschl EE, Säemann MD, Böhmig GA, Csonga R, Sobanov Y, Baumruker T, Zlabinger GJ.

Abstract
Mast cells are well known to contribute to type I allergic conditions but only recently have been brought in association with chronic relapsing/remitting autoimmune diseases such as celiac disease and ulcerative colitis. Since the bacterial metabolite n-butyrate is considered to counteract intestinal inflammation we investigated the effects of this short chain fatty acid on mast cell activation. Using RNAse protection assays and reporter gene technology we show that n-butyrate downregulates TNF-alpha transcription. This correlates with an impaired activation of the Jun NH(2)-terminal kinase (JNK) but not other MAP kinases such as ERK and p38 that are largely unaffected by n-butyrate. As a consequence, we observed a decreased nuclear activity of AP-1 and NF-AT transcription factors. These results indicate that n-butyrate inhibits critical inflammatory mediators in mast cells by relatively selectively targeting the JNK signalling.

 

[Gingergrrl]

@adreno so according to the articles (which we know are above my head!) would certain probiotics help stabilize MCAS? I know I have asked this question before but I've gotten lots of different answers which just left me with more confusion! I had though Align and the Bifido probiotics were the best for MCAS but now not sure?

 

[adreno]

@adreno so according to the articles (which we know are above my head!) would certain probiotics help stabilize MCAS? I know I have asked this question before but I've gotten lots of different answers which just left me with more confusion! I had though Align and the Bifido probiotics were the best for MCAS but now not sure?

Clostridium butyricum is a butyrate producing probiotic, which is what makes it especially interesting. I don't know how much the bifido species matter. Resistant starch is likely important, as it feeds burytare producing species.

 

[Misfit Toy]

I was on Butrate for two years @adreno with no improvement. Also, I have no idea what you mean when you say Depakote is an HDAC inhibitor. Can you clarify?

 

[adreno]

Histone deacetylase inhibitors (HDAC inhibitors, HDIs) are a class of compounds that interfere with the function of histone deacetylase.

HDIs have a long history of use in psychiatry and neurology as mood stabilizers and anti-epileptics. More recently they are being investigated as possible treatments for cancers,[1][2] parasitic[3] and inflammatory diseases.[4]

https://en.wikipedia.org/wiki/Histone_deacetylase_inhibitor

 

[Misfit Toy]

@justy -I'm so sorry. I know all too well how you feel. The burning and itching sounds like hell. Itching is another form of pain. I have itching also but it comes and goes.

Do you sleep?

If you have a reaction to abx, even though you need the meds for Lyme...you can't take them if they cause you to become sick from MCAS. It will be worse for you.

I have felt suicidal a lot this year and it's due to inability to take meds, not foods. And then the never ending prednisone. Not on it now. The serum sickness from the enbrel made me nuts. I had itching all over, pain, flu like illness and I couldn't get out of bed. I was nuts with what is going on.

I hope my doc today has some thoughts.

MCAS gives a whole new meaning to being LOW. And it's worse than anything to not be able to take or do what others can take without a hitch.

We need medicine and we need food....and not just rice!

 

[Misfit Toy]

@adreno -I read this. This is for a scientist talking of receptors, etc. I went to art school. This is Greek to me. My question is...what are you trying to tell me? Is Depakote a good or bad thing because I am unsure of what you are trying to convey.

 

[Misfit Toy]

Plus, like I said, butyrate never stopped mast cell activation for me.

 

[adreno]

@adreno -I read this. This is for a scientist talking of receptors, etc. I went to art school. This is Greek to me. My question is...what are you trying to tell me? Is Depakote a good or bad thing because I am unsure of what you are trying to convey.

According to the study I quoted, HDAC inhibitors limit mast cell activation, so supposedly these compounds are helpful for MCAS.

 

[Misfit Toy]

Interesting. Not sure what's going on. The Depakote causes no rash, but I can't breathe and I develop heart palpitations. My breathing is labored. Plus....gastritis starts.

These are Depakote sprinkles. I put them under my tongue.

I have to take Zyrtec and Prilosec after taking the Depakote when the reaction starts.

 

[Misfit Toy]

Wasn't there once a CB-The Game Changer thread on here??? Where did it go...can't find it.

 

[Misfit Toy]

http://www.mastocytosis.ca/MSC Patient Experience April2012.pdf

Justy and ginger may have already read this. This is so on the mark. I don't believe it's the gut.

 

[Gingergrrl]

http://www.mastocytosis.ca/MSC Patient Experience April2012.pdf

Justy and ginger may have already read this. This is so on the mark. I don't believe it's the gut.

Mast cells are throughout the body in the heart and lungs and skin and everywhere, not just in the gut. I am seeing an MCAS specialist now and slowly weaning off Gastrochrom but still taking seven meds in order to eat (six once I hopefully dump the Gastro.)

MT, I do not understand the science of things either and all these terms and articles are over my head (my masters was in social work) so don't feel that you are alone in this.

And I recently had a severe reaction to 1/64th of a pill if something that many take at full dose. I was sick for days from it with what felt like intra cranial pressure and akathisia. I do not tolerate foods, meds, smells etc and can't even start this mold detox program until I get to a stable environment away from mold and my MCAS and mold drs communicate which seems doubtful will ever occur.

I understand wanting to give up, I really do, but am glad you are still here fighting and thank you for your PM and always being supportive.

 

[AndyPandy]

Hi there @Misfit Toy. Thinking of you. Sorry you continue to have such a tough time.

Sending you a big bunch of virtual flowers

Best wishes, Andy