ME/CFS is a mast cell disorder (hypothesis)

[ebethc]

@ebethc Hope you're in the clear If you do have some involvement, I've been getting fabulous results with royal jelly, mangosteen, and rutin. Also Neuroprotek, which is the only one that's not inexpensive.

@ahmo - royal jelly made me feel weird... Quercetin & mangosteen are excellent... Neuroprotek is okay, but not great for me considering the price...

 

[Sherlock]

Here is another list of MC receptors and agonists: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/table/T1/
...which is from this FFT: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318920/

Note that mast cells have histamine receptors, so IMO that can setup for a vicious cycle which gets started off by MTHFR 677.

Then there are more receptors which are not found on the above two lists, such as for acetaldehyde
http://www.researchgate.net/publica...irway_mast_cells_to_cause_bronchoconstriction
"Acetaldehyde induces histamine release from human airway mast cells to cause bronchoconstriction."

 

[gregh286]

guys, hi.
just wondering how you are getting on with inosine.
Anyone still using neuroprotek.

 

[ahmo]

I'm still using Neuroprotek, going on 1 year. I self-test, use it as needed. This tends to be once/day, but when detoxxing, 2 or even 3/day. I can sometimes differentiate my symptoms and know this is what's needed: racing thoughts in particular. But also when I have a flare in my small MC symptom cluster. I think it's a great product. I mostly use generics for my supps, but this is worth even the relatively high postage it costs me. I'm a big fan of Dr. Theoharides.

 

[ebethc]

I used Inosine a lot in the winter - hoping to bolster my immune system... well, I got a 2 month flu after being on inosine a good 4-5 weeks that really demoted my confidence in Inosine!

Not using Neuroprotek ... I find that good old quercetin is just as effective.

technically, I tested negative for allergies BUT the past week has made me so miserable w itchy eyes, sinus probs, etc. that i wonder if my tests (both blood and scratch) are a false negative... maybe my immune system is too lame to create antibodies?? probably..

Nothing seems to help my allergies... quercetin is slightly effective, and zyrtec does nothing..

 

[ahmo]

I'm using NP for my brain/mental activity. When I get other MC symptoms, I use royal jelly, rutin, and havee replaced quercetin with mangosteen.

 

[gregh286]

I suffer from facial ideopathic ANGIOEDEMA since 1994.
I guess I am a good candidate for mast cell disorder.
Strange thing saliva histamine levels are low.
Will try royal jelly etc guys.

Thanks for tips.

 

[ahmo]

I suffer from facial ideopathic ANGIOEDEMA since 1994.
I guess I am a good candidate for mast cell disorder.

yikes...I looked at Wikipedia.

You might be interested in some of the info from Theoharides. His website has many publications available. I'm linking a few. Also, lowhistaminechef.com has a lot of interesting articles, in addition to low histamine cooking. Once I started tracking down my relatively benign symptoms, I found that there are many symptoms that can be provoked. I get blood blisters in my mouth, and just learned that my easy bruising is due to the role of mast cells and heparin. My understanding is that histamine levels may not indicate the problem. The second link below is to an excellent article I've just found. Follow the links in the article to the Canary papers she's written.

Also, I've found that following suggestions of Martin Pall in his nitric oxide theory, NO/ONOO-, definitely helps keep me from having flares. ...mast cells which release histamine are activated by both nitric oxide and vanilloid stimulation (Chapter 7) and may therefore be part of the cycle mechanism http://www.thetenthparadigm.org/therapy.htm

https://mastcellblog.wordpress.com/mastcellguide/

mastcellmaster.com

http://mastcellmaster.com/documents/2014-04/TCT-Research-Overview-3-12-14.pdf 92 pg presentation 2014 Mastocytosis with Theoharis C. Theoharides, MS, PhD, MD, FAA‬

http://www.youtube.com/watch?feature=player_detailpage&v=CplxXGpFeKQ

Transcript of Mastocytosis & MCAS Medical Lecture held June 6, 2011
http://www.mastocytosis.ca/2011 MSC Medical Lecture with Slides.pdf 153 pg description/lecture

 

[gregh286]

thanks ahmo thats great.

 

[ebethc]

I'm using NP for my brain/mental activity. When I get other MC symptoms, I use royal jelly, rutin, and havee replaced quercetin with mangosteen.

I pulled out the mangosteen, pycnogenol and astaxanthin this morning to deal w my allergies and WOW what a difference! I don't know why this work, but I'm glad you reminded me about mangosteen... thanks Is there a max does of mangosteen? I take capsules

trying to raise glutathione via whey, too

 

[ahmo]

@ebethc That's really interesting. I have no idea re mangosteen limits. I self-test for all my dosages, mangosteen ranges 1-2 caps/day. Pycnogenol and astax are among the antioxidants that Martin Pall lists. I'm now using "triple strength" astax and switched from pycnogenol to resveratrol, which my body prefers. So you might want to have a listen to his vid or scroll through his paper describing the NO/ONOO- cycle. Those are linked in my signature.

There's a strong link between the NO/ONOO cycle and adrenal health, and adrenals and MC. When my adrenals are stressed, my MC flares. When my liver is overloaded, adrenals are stressed, and MC flare. So I use coffee enemas for liver. And for some months now, high intake of antioxidants, which is the core of Pall's protocol. Strangely enough, carrots have become a central part of my antioxidant intake. I've felt blood blisters rising in my mouth, and then deflate as I've eaten carrots. I have much to learn about this whole area. mast cells and No/ONOO.

 

[jesseboyd]

@ahmo Have you seen much improvement by treating mast cells?

 

[ahmo]

@jesseboyd Managing my mast cells has not led to an improvement of my ME, if that's what you're asking. Rather, when my MC symptoms flare, it's an indication to me to be careful, to not over-do, to see if I'm getting enough rest. Being attentive to the NO/ONOO cycle is now keeping these symptoms in check. I think this is the longest I've been without flares in my nostrils, ears.

I don't know where this fits into the MC issues, or if there's a relationship, but I've just begun Vit B2 in the activated form of FMN. I've only had 2 doses. But I feel what seems to be a distinct inner calm. And possibly better stamina. It's been recommended in relation to MAO-A, my sole homozygous snp. What I do know is that anything that is calming is good for MC. I still need to spend time understanding this thing, but here's a brief quote about it from aaron_c.

http://forums.phoenixrising.me/index.php?threads/b2-i-love-you.15209/page-42#post-532708

I feel like I have not been thinking about b2 use as a cofactor in the right sense, so I wanted to share what I found.

The question I had recently is what Christine/DogPerson meant by B2 being “used up” by various other vitamins. Is it used up like ATP gets used up and becomes ADP? Or is it used up because there are more enzymes that require FMN (flavin mononucleotide, aka riboflavin-5-phosphate) as a prosthetic group--meaning it is more like a wrench that all flavoproteins (proteins using FMN or FAD) have to share.

 

[sillysocks84]

I believe it is.

 

[Gingergrrl]

I believe it is.

@sillysocks84 Do you mean that ME/CFS is a type of mast cell disorder or vice versa or that they are one and the same? I am very curious about this topic as I developed severe MCAS in April/May of this year and treating it has been the single best thing I have done since getting ill over two years prior to that.

My histamine blood levels were 3x above the normal limit for six months before the MCAS reactions started (and maybe even prior to that) so I suspect I had some kind of mild, smoldering MCAS for many years b/c so many of the symptoms overlap.

In my case I was unknowingly being exposed to toxic mold (plus viral triggers) and I suspect the mold tipped the balance making the MCAS into the severe, active form. So for me, they are 100% related but I know for others they are not so I guess again it is a matter of different sub-sets?

 

[sillysocks84]

@sillysocks84 Do you mean that ME/CFS is a type of mast cell disorder or vice versa or that they are one and the same? I am very curious about this topic as I developed severe MCAS in April/May of this year and treating it has been the single best thing I have done since getting ill over two years prior to that.

My histamine blood levels were 3x above the normal limit for six months before the MCAS reactions started (and maybe even prior to that) so I suspect I had some kind of mild, smoldering MCAS for many years b/c so many of the symptoms overlap.

In my case I was unknowingly being exposed to toxic mold (plus viral triggers) and I suspect the mold tipped the balance making the MCAS into the severe, active form. So for me, they are 100% related but I know for others they are not so I guess again it is a matter of different sub-sets?

I think that mine was triggered by a vaccine for sure. Looking back through my childhood I had minor instances here and there I am now linking to overactive masts in my mind. The vaccine probably tipped my mast cells over the edge into attack mode and now I'm in a loop. I think mast cells could possibly be the cause for a large percent of the cfs/me/pots/OI group.

Cort Johnson and dr. Theoharides have written about mast cells and their effects. If you look at my current posts, read the Cort Johnson article for sure. The latest article I found was one where they can use the treg in the mast cells to stop them from degranulating out of control. I really hope this research makes it to the masses. What if it improves our community if not a cure? If our disease is from smoldering mast cell activation over period of years building up to the accumulation of the cfs/me disease label it is quite possible in my mind. If this is garbled I apologize, my dh is talking to me. Feel free to message me.

My current symptoms (among my older ones) are trouble eating due to rashes and funny feeling in throat. Scary. It pops up worst during my time of month when estrogen is higher. And one of the things estrogen is capable of is degranulating masts. I now also see my diagnosis of pcos years ago as mast cell related as masts can be a problem in the reproductive system, too. My insulin resistance is what causes mine, not overabundant testoterone. And mast cells in fact cause insulin issues as well. Ok gotta go before dh gets too upset.

 

[Gingergrrl]

@sillysocks84

I think that mine was triggered by a vaccine for sure. Looking back through my childhood I had minor instances here and there I am now linking to overactive masts in my mind. The vaccine probably tipped my mast cells over the edge into attack mode and now I'm in a loop.

In my case, it was definitely not triggered by a vaccine but I had a series of triggers with toxic mold exposure being the final one. I read a lot about how mold is a trigger of histamine and it all made sense.

I think mast cells could possibly be the cause for a large percent of the cfs/me/pots/OI group.

This is definitely the group that I am in and severe autonomic chaos is my #1 symptom until the mast cell & anaphylaxis stuff started (but that part is drastically improved.)

Cort Johnson and dr. Theoharides have written about mast cells and their effects. If you look at my current posts, read the Cort Johnson article for sure. The latest article I found was one where they can use the treg in the mast cells to stop them from degranulating out of control. I really hope this research makes it to the masses.

I am not sure if I have read Cort's article or which post you are referring to but I have read some of Dr. Theo's stuff and take two Neuro Proteks every day with my pre-food meds. There is a also a wonderful blog by Lisa Klimas called "Mast Attack" which you probably already know about. She has a FB group, too.

What if it improves our community if not a cure? If our disease is from smoldering mast cell activation over period of years building up to the accumulation of the cfs/me disease label it is quite possible in my mind. If this is garbled I apologize, my dh is talking to me. Feel free to message me.

Not garbled although I am confused what specifically you are referring to re: improving or curing our community? Do you mean a specific MCAS treatment? Not sure what you mean.

My current symptoms (among my older ones) are trouble eating due to rashes and funny feeling in throat. Scary. It pops up worst during my time of month when estrogen is higher. And one of the things estrogen is capable of is degranulating masts.

Yes definitely worst with time of the month.

I now also see my diagnosis of pcos years ago as mast cell related as masts can be a problem in the reproductive system, too. My insulin resistance is what causes mine, not overabundant testoterone. And mast cells in fact cause insulin issues as well. Ok gotta go before dh gets too upset.

Don't want to get you in trouble with DH... LOL... feel free to PM me anytime.

 

[sillysocks84]

@Gingergrrl I will be pm'ing you. Don't worry about the dh lol he's fine.

 

[ahmo]

@Gingergrrl Cort's article here.

 

[Gingergrrl]

Thanks @ahmo and I just read it and had not seen that one before (unless my memory fails me which is very 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.