You're a great mom, Lissa. And an added bonus is that while helping her you can also end up helping yourself.
The beginning treatment as described by Afrin and other doctors in their talks is an H1 blocker, an H2 blocker and a mast cell stabilizer such as quercetin (which helps to keep the mast cells from getting set off too easily).
Good. There are other videos by Afrin and also by Dr. Theoharides (the granddaddy of mast cell disorders). Also various blogs by patients.
What does your daughter think?
"So, if these lymph nodes were cancer, they wouldn’t be feeling better or smaller?"
Correct. Very usually so.
Every node has an enclosing 'capsule'. When a node enlarges a lot from an immune reaction, it presses against the capsule and that causes pain. Cancerous nodes usually aren't painful because they grow through the capsule.
There are immune cells called 'mast cells' which release the biochemical histamine. Histamine can cause the splotchiness when the mast cells in the skin suddenly go off like landmines and release many powerful biochemicals. Mast cells line the GI tract, too. A fairly newly discovered disorder called MCAS makes them go off inappropriately and causes all kinds of various problems - including mysteriously enlarged nodes.
Find on youtube a video by a mast cell specialist called Dr Afrin, with '101' in the title. You and/or your daughter can see if that fits her. If so, then the next step is finding a doctor who understands MCAS. That might not be easy, though.
Please let me know what you think of the video.
Hi, Lissa. The odds of lymphoma are very low. The reasons:
- lymphoma doesn't make nodes come up very quickly and then just go away
- things are even more pointing toward not-lymphoma because she's had the pattern repeatedly
- the nodes being sore tends toward not-cancer
Since the antibiotic didn't seem to work, that tends toward some sort of immune reaction without actual infection. If there is no actual cat scratch fever infection, then it could be an immune reaction to cat saliva or dander/fur. But then, other episodes in the past most likely had different triggers. There might be many possible triggers.
Testing for raised Angiotensin Converting Enzyme is a way of looking for sarcoidosis in the lungs, as is the chest x-ray (which also can look for TB). Sarcoidosis is a mystery immune condition. That's probably not what she has, because that just wouldn't go away and come back in cycles.
In her CBC blood tests, if none of her immune cells were not raised then that tends away from being an actual infection - but doesn't rule out an immune reaction.
The ENT is probably testing for all those things to rule them out, but doesn't expect them to be the cause because they don't quite fit. But you never know until you try. So there's no reason to get very worried about lymphoma; but sure, you and she should want to ultimately find out what is the true cause and not give up.
Does she flush a lot, get dizzy when first standing, or react badly to heat or bee stings or some foods?