Theo is, to my mind, like the George Washington and Thomas Jefferson of mast cells. Here is the world's best MC talk: https://www.youtube.com/watch?v=6gfTFwJgIVQ
It's excellent. Very information dense, and not a beginning intro. But you're not a beginner anymore :)
He has an intro one: https://www.youtube.com/watch?v=Owtt8NO7ahU
Afrin also has a simpler one with "101" in the title.
When you get tired of reading, you can switch to listening :)
I was listening to a Dr. Theoharides interview (the mastcellmaster guy). What seems to be edema in you, if it's angioedema, would apparently result not from histamine but from a different mast cell product called Prostaglandin D2. So an antihistamine wouldn't be expected to help that.
"I’m pretty normal as far as flexibility goes.."
Then we don't have to consider Ehlers Danlos Syndrome, which is often associated with MC activation problems.
Do you happen to have very flexible (or inflexible) joints?
I wouldn't be surprised if you researched--> mast cells hysterectomy
and found an association. The same with requiring gall bladder removal. MCs attract other immune cells that can be destructive.
"Could this explain the elevation in rbc"
You're correct that it is a known effect of testosterone to raise production of RBCs, and possibly other blood cells, too.
You've got a lot going on :) Can you remind me why you're taking the testosterone?
Well, you might have apnea, but it would likely be a result of the underlying problem. E.g., people with CFS might get apnea.
And btw, a person can supposedly have apnea and not know it -- but then a 'sleep study' is done and shows they supposedly wake up even hundreds of times.
At this point, you should look up a list of foods that contain high histamine, and see if eliminating them makes you somewhat better.
I looked at your ultrasound reports and there is no reason to suspect lymphoma or any cancer.
The ceruloplasmin test makes me think they have been looking at high histamine from a liver problem. (The liver is where histamine is broken down.) You have no liver problem, but high histamine can result from other sources.
Another possible cause for angioedema is high bradykinin. Let's verify that you are not taking a high blood pressure drug called an ACE Inhibitor, right?
Nope, I've never gotten any PM from you. I'll see if I can discover why.
Can you click on my name and send me a new one that way? We'll see how that goes.
Sorry, I haven't gotten any PMs from you.
CRP (C-Reactive Protein) is a measure of overall inflammation. Another is ESR. There are others.
If your whole system has higher inflammation, the MCs are more likely to go off.
"Also, what brand niacin and mg should I start with?"
Watch some vids first. It's a test, not a treatment. It will even make your BP go down temporarily and possibly dramatically, so you should be wary. Or maybe don't do it at all.
"In 6th grade, I literally didn’t go for two weeks and finally told my mom and after 2 or 3 enemas I finally went.. during pregnancy was terrible!!!!"
Problems with gut bacteria, which you have, can lead to heightened inflammation bodywide. That worsens the mast cell problem. Did you have a CRP blood test?
How old are you?
"Because I always get too constipated with pain meds. Like I can go week plus days without Bm if I take pain pills... " Okay, that's because opioid type painkillers stop movement in the gut (peristalsis). But if you're more sever than average, why? Maybe lack of good gut bacteria. Maybe. Some people get horrible health because of that, especially after many bouts of Abx.
...and angioedema is usually associated with rashes (urticaria). But you don't mention having rashes, so that's a clue. Of something.
Keep your chin up, we're making progress in Dxing :)
"I didn’t even take pain meds after gall bladder surgery.. except for ibuprofen." Why was that?
homocysteine = Hcy
Is your pulse rate high? If you get dizzy because the water in your blood stream is leaving and going into tissue, that makes the heart beat faster to compensate.
Please research to find any association of your meds with angioedema.
Got to go for now...
Okay, so your MCs go off (almost like a land mine) from physical triggers like heat and maybe pressure. That is probably genetic and would be your predisposition.
(CrossFit is pretty heavy duty, so you must have been fairly fit to even start it.)
Then the operations *triggered* a period of chronic immune dysfunction. That's the working theory. I know somebody who had a gallbladder removal and went through a period of sickness for months. Then it just stopped, but don't count on that.
Is there any drug you started right after the 1st operation? A med can be a trigger.
Have you ever had homocysteine tested?
I've never heard of the swelling like that, so I don't know the prognosis. But the standard treatment with the "loop diuretic" has done nothing. That's a clue.
It is prudent to do any experimenting with a doc's approval.
So for now there is the generic benadryl, or the quercetin capsules. I doubt there's anything topical that would get deep enough into where the problem is.
Were you an avid exerciser?
What you seem to have is an immune dysfunction which is, or is similar to, Chronic Fatigue Syndrome in many ways. People with CFS often go years before a diagnosis. So yes, it's lucky that you came here and I am glad to be of help :)
But people with CFS have a variety of symptoms. The all over angioedema is something very unusual. Improvement there would be dramatic and easily visible, right? We can try to logic our way through that.
I don't think there is one particular type of doc that handles these things. It depends more on their experience with themselves or their patients.
It's worth trying the diphenhydramine for insomnia, but cautiously. I think you said you feel full easily, so Tagamet might help that part.
If you cautiously take niacin and flush much much more than usual, that's evidence to give to a doc.
Btw I've seen reports of people with MC disorders who've had problems with surgery.
I sent to you a PM with link, maybe that will work. I don't use FB at all.
Wow, you're very determined. That is great.
Btw, if you can't concentrate (aka "brain fog"), that's likely from immune system chemicals. When you feel tired and bad from the flu, that's all from immune chemicals, not from the virus itself.
Insomnia? Sominex is diphenhydramine, which is the anti-histamine Benadryl.
Consider that the "antacid" Tagamet is a histamine blocker.
Maybe you'd like a vid from this top doc/researcher, Theoharides: https://www.youtube.com/watch?v=Owtt8NO7ahU
or Carnahan: https://www.youtube.com/watch?v=ISV2EUcBP1Q
It seems to be known that an abx can cause tiredness. The possible cause could be somehow from killing off the beneficial gut bacteria. If ever I was taking an abx, I'd take yogurt as a minimum to help restore the beneficial bacteria. Or you can go further and buy capsules with mixtures that also include bifido etc. It's a complicated subject, like most things are.
Let's hope that stopping the abx helps end the awful tiredness. Let me know how it goes.