Nanonug, do you think it is an idea to do empirical testing of mast cell activation syndrome: that is to say, by experimentally taking a mast cell inhibitor drug like ketotifen, and seeing if symptoms abate?
Have you tried any mast cell inhibitors yourself and got results?
I have and they have made a difference. I also have sinus inflammation with brain inflammation.. always go together. I am addressing as mast cells. I also am on Yasko's protocol and am focusing on resveratrol, grapeseed extract and pycnogenol along with neuroprotek from algonot (Dr Theoharides) with stinging nettle. I do take about 1/3 a capsule of curcumin but will switch to tumeric and see what happens. I am reading that different antioxidants and OPCs effect different inflammatory markers, so it made sense to me to use a combination.
I also take h1 and h2 blockers (zyrtek 10 mg and zantac 10-20 mg in am and atarax 25 mg and zantac 10-20 mg in pm). I take benadryl rarely these days for "breaththrough" issues (breathing issues or brain inflammation, though atarax generally works better for that). This is baseline h1-h2 support for someone with mast cell issues.
I also take ketotifen 2 mg twice a day. I had livedo reticulitis on my thighs until I took ketotifen. I could not tell any other benefit and I cannot say for sure the ketotifen resulted in this. I had also started midodrine which I was able to stop once I took Querca Max from Clark's Pharmacy (similar to d-hist). I switched from QM to neuroprotek since it also has luteolin. I had to add in stinging nettle which inhibits leukotrienes and is a vaso constrictor. My heavy leg pain went away with NP and stinging nettle. I take 100-200 mg of stinging nettle a day. I have noticed that my legs feel lighter when my inflammation is down. This inflammation seems to be able to trigger neuropathic pain as well and or an intense bone to skin pain (which is also common with mast cell disorders).
My experience has been that either just working up to 6 pills of NP a day and or working up to 250 mg of gse, 100-200 mg of resveratrol (one in am and the other pm) and 50 mg of pycnogenol am and then again in pm has calmed my body down. I also upped lithium to 15 mg.
I am working on Yasko's protocol in stages and not at stage where I address GI bugs.
Once the weather shifted here from chilly-cold and less humid to humid and warm, my brain inflammation kicked in (along with sinus inflammation). I also decided to back off the ketotifen to 1 mg in am (experimenting) at same time, so not sure which is causing this but I do see a trend of increasing sinus-brain inflammation in spring which gets better in winter. I am going to add in the 1 mg of ketotifen and wait until weather turns cold again to experiment.
I have chronic gi issues and became much sicker after 6 mnths treatment for lyme and babesia which destroyed my gut. I am now testing pos for EBV (early antigen), have relatively high nagalase and high mycotoxin levels in urine (mold issue in house, which we have since left along with belongings). I had sinus surgery to address infected sinuses (fungal and all cavities). So there has to be a connection there for me.
I am finding that many antioxidants effect mast cells.. directly or suppress mediators. So difficult to know if mast cells or something else is going on. I do know that the h1 blockers can help come crazy symptoms that seem to involve my nervous system. Also even when adding in supplements in stages, difficult to know if a change is because one supplement has built up in system or the one added is having the effect unless immediate. I did have an immediate response to Querca Max which continued with NP when I added stinging nettle, though, for the complete effect (this was for legs). Brain inflammation (anxiety, depression, rage, inability to concentrate) most obviously helped by atarax first then sometimes zyrtek and other times benadryl. I can't tell if the supps help so clearly.
POTS, EDS, MCAS trio would fit me and my daughter who may have excess mast cells in stomach and duodenum (30 per sample). I keep her on h1 and h2 blockers (and now NP) esp now to keep stomach acid out of her throat since she has what looks like EoE.. still pending results on that. She is also on Yasko's protocol and in beginning stages so not at GI protocol yet. She and I both have positive results for H Pylori and excess strep. She has also been exposed to lyme and clearly has EDS, hypermobile (appt in late spring with specialist).
