Hi, first off: was your gall bladder empty of stones ("acalculous") ? If so, that would point to an immune system gone awry.
2nd: are you taking any medications, e.g. steroids?
Okay, I just took a *quick* look and Effexor doesn't seem to cause any of your symptoms. It's best to check more than one source, though.
I believe that testosterone can make your cholesterol go bad.
Leukocytosis (high WBC) can be caused by stress and/or stimulants (Adderall). But your WBC is not near high enough to think of leukemia, btw.
It's a good idea to first identify which symptoms can be caused my meds, then focus on what remains. Have you been able to sort through all that procedure yet?
Have you had your cortisol level tested?
Lymph nodes normally get enlarged to fight some infection. When they don't go down afterwards as they should, it would usually be from internal buildup of scar tissue (fibrosis). Or it could be from a chronic infection, like EB virus. Or 'granulomas' inside. That could very well be related to elevated WBCs.
I'd have to think about how the low vit D fits in, it could be a cause or an effect. The same for elevated RBCs.
Can you get the sonogram reports? If they say
"fatty hilum" or "normal architecture" is present, you can stop worrying about lymphoma. (I wouldn't worry about lymphoma anyway at this point.
I'll be back later...
I think we can make some progress on Dx'ing this :)
Do you have any CBC that breaks down your granulocytes as to which one is high? Eosinophils, basophils, and also what are your neutrophils?
I think that you are correct that the gallbladder surgery triggered this, possibly a runaway immune reaction. That can certainly cause chronic tiredness, too.
Would you say that your sleep in unrefreshing?
Do you have blood relatives with odd immune conditions? Lupus, bad allergies, Raynaud's?
Do you get spontaneous flushing of the skin?
Do you get lightheaded when standing?
Did you have any bad reaction to the surgery anesthesia?
(It's very good that your answers are so thorough.)
Not TMI at all, it takes lots of info to understand a case like this.
And bingo, here is what I was looking for, re the granulocyte breakdown:
"ABSOLUTE BASOPHIL COUNT 0.1 0.0-0.1 K/uL"
That's at the very upper edge of normal, almost in the high zone. Basophils are similar to the very important MAST CELLS, which cause swelling. This is very likely at the center of your problems.
The term "granulocyte" means that they are cells (cytes) that contain granules, and the granules contain powerful biochemicals. One such chemical is the famous HISTAMINE, which causes fluid to leak from the blood vessels out into the tissues. That's your swelling from water (not from calories of course). That's also runny nose from allergies. Mast cells also put out many other powerful biochemicals that have a large variety of effects.
Do you get very bad reactions from bee stings?
"my skin literally gets tight from swelling"
Likely your mast cells again. And that is a valuable clue because it's rare.
Do you feel dehydrated a lot? Drink a lot of water? Have you had a creatinine/BUN blood test?
The bee sting reaction is a classic sign of excess mast cell reactions. No anaphylaxis yet, but you must be wary of things getting worse. A mast cell doc named Theoharides gave all his Pts an epi pen.
What you need is to become very versed in all this so that you can convince a doc to do whatever testing you might want.
"when I do I feel super bloated"
Mast cells line the GI tract, so you can have lots of GI symptoms from them. Also they line the respiratory tract. Also the skin, of course.
What to do? It's complicated. Determine why your MCs are over reactive. Rule out any bad causes. Then take "mast cell stabilizers" probably. Also avoid things that might make your MCs more volatile. You'll have to do research and become expert. There is probably no cure per se, but you can do management and improve your quality of life a lot.
Which diuretic? A thiazide or a lasix/bumex type?
Can you write on your sternum with your fingernail? (dermographia)
here's an MC degranulating, 29 sec video
https://www.youtube.com/watch?v=VT7knZ6_8rk
Also please find some vids showing "niacin flush". You might flush a *lot* more than normal, so be very careful if you experiment.
Also, have you had homocysteine tested?
Let's see what else... your potassium is okay so you maybe/probably are on a loop diuretic, and you'd have to be wary of loop diuretics producing more prostaglandins which cause reddening. Then there's possibly avoiding arachidonic acid in foods.
Got to go for now...
here's an MC degranulating, 29 sec video
https://www.youtube.com/watch?v=VT7knZ6_8rk
Also please find some vids showing "niacin flush". You might flush a *lot* more than normal, so be very careful if you experiment.
Also, have you had homocysteine tested?
Let's see what else... your potassium is okay so you maybe/probably are on a loop diuretic, and you'd have to be wary of loop diuretics producing more prostaglandins which cause reddening. Then there's possibly avoiding arachidonic acid in foods.
Got to go for now...
I ran across this very recent article. It pretty much says what we've been talking about. https://www.medscape.com/viewarticle/893858
Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome'
Also, you hadn't replied as to which kind of diuretic you've been taking, but from a very quick look I don't anyway see that being used to treat angioedema. Angioedema is localized and temporary, while what you have seems to be similar but generalized and chronic - quite possibly because your MCs are constantly releasing. Antihistamines might be a good avenue for you. There are many types. Or/and maybe corticosteroids.
Quercetin is a plant-derived option to try and stabilize MCs.
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.
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'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.
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.
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?
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?
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...
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?
...and angioedema is usually associated with rashes (urticaria). But you don't mention having rashes, so that's a clue. Of something.
"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.
"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?
"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.
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.