Here's a high-level thought-provoking video for an insomnia night: https://www.youtube.com/watch?v=BmrbljiXOsY
"Overlap syndromes" = some of this and some of that. Like the lupus-but-not-lupus that I've been referring to.
I just ran across her (a rheumy) today, she has a good explanatory style. Disregard the specifics of Rheumatoid Arthritis (you don't have that) or Mixed Connective Tissue Disorder (you don't have RNP antibodies). Focus instead on her take that in mystery cases you might have to focus on features, and not get fixated on looking for a formal diagnosis - though most everybody, patients and docs alike, naturally want to have a clear cut, formal Dx. But immunology/rheumatology can often be murky.
"During my mass detox from everything to try and find the root cause of what was going on... I changed my diet and eating habits..."
Slinger, your ability to dedicate effort on this is going to be one of your biggest assets. Most people give up very quickly and just wish for some magic specialist with a magic pill to come over the hill. I commend you.
"I've never found any triggers."
Be aware that some *very* rare people can only have red meat, plus maybe some supplements. Even the vaunted 'leafy greens' give them problems, medical and even psychological.
There's a saying in medicine: "If you hear hoof beats in Central Park, don't look around for zebras. Look for horses." Except sometimes, there really is a zebra.
Have you been checked for chiari malformation?
"Hydroxyzine. Would this be comparable to Benadryl?"
They are both H1 blockers. But the stomach acid suppressors like Pepcid are H2 blockers. People with mast cell disorders get prescribed both, btw. You prbly have stomach problems?
Note that stomach acid production is related to histamine.
I'm not the pill happy type but if I were you I'd take the hydroxyzine, for a possible good night's sleep (lack of sleep is pro-inflammatory) - but also as an experiment to see what happens. Maybe 3 days. Since it's a prescription, we know it is physician approved for you.
It also reinforces the concept that inflammatory histamine has anxiety-like effects, since hydroxyzine/Atarax is known for reducing anxiety while not being a benzo tranquilizer.
I wonder if you have psychologically driven panic attacks, or they are instead immune chemical driven. I'd guess the latter.
"Zyrtec shortly after the histoplasmosis. It worked great for about a year, then just stopped working."
"just stopped working" is a known thing in these circumstances. I have a theory but won't cloud matters at the moment with it.
Zyrtec is a non-sedating H1 blocker.
Oh, I should have mentioned that an ID doc would know if histo granulomas can 'leak'.
Since you have had proven granulomas, and they wouldn't have gone away by themselves, then that provides a possible alternative Dx: the granulomas could be in effect 'leaking' and that could activate systemic inflammation. Not likely, but possible.
E.g., if a person wants to receive a powerful anti-TNF biologic drug, they will be denied if they have latent tuberculosis (the TB is walled off inside granulomas). Keeping pathogens inside a granuloma is an active process, not like being encased in concrete.
But arguing against this theory is that your neutrophils are not elevated. Neutrophils typically get elevated over fungus and bacteria. That's why I'd asked about your neuts.
(Lymphocytes get elevated typically over viruses. Your absolute lymphocytes are lowish. Although lupus-like conditions are known for low RBCs, they can sometimes lower white blood cells or even platelets. The mechanism for that is destruction by immune cells.)
I mention these things because as you get familiarized with how immune dysfunction goes, your own condition becomes more understandable. Less of an opaque black box, so to speak.
The odds are extremely high that you have a chronic inflammatory condition. With a rare exception (neurogenic inflammation), it's pretty much always the immune system that causes inflammation.
You have many signs of the infamous Lupus, which is called the disease with a thousand faces and also sometimes called the great mimic. That's because of the large variety of places where it can attack.
Your doc has investigated for Lupus. But you don't have the specific antibodies *associated* with Lupus, mainly dsDNA and Smith. Therefor you don't officially have Lupus and docs won't give you the Tx for Lupus. Dx'ing Lupus is not necessarily simply black or white anyway. And some cases are mild. So you can find a rheumy who's specifically handled a large number of Lupus and similar cases, and get a 2nd opinion - that's entirely reasonable and maybe you have done that already.
The Tx for Lupus is to reduce inflammation and get symptom-free remission. But you won't get the first-line anti-inflammatory Plaquenil, nor more powerful drugs like the DMARDs, because the risk outweighs the benefits, for now.
So you should want to live as anti-inflammatory as possible, and become expert at that. That's a big topic right there.
However, foremost should be keeping an eye on kidney function. Did any doc order creatinine and GFR every 3 months? Men are less likely to get kidney inflammation than women, but once having it are more likely to have a severe case. And rapid, irreversible damage. An OTC protein-in-urine dipstick will flash the alarm before you'd see any frothing or redness in urine.
There's much more to this. I'll post more separately as time allows.
Also please reply as to whether you have granulomas showing on a lung scan. Have you seen an Infectious Disease doc? I'd websearch for--> sequelae histoplasmosis
and/or--> chronic complications histoplasmosis atypical
"base of skull"
I forget the name offhand, but there are two structural conditions associated with your inflammatory symptoms. One has the lower end of the brain extending into the spinal canal. The other involves some narrowing in the same area, IIRC.
Dirtslingerr, the odds are very high that you are suffering from immune system dysfunction. Immune system dysfunction causes inflammation when it shouldn't.
"...or they think I'm nuts because they don't see anything"
That is so very typical, to happen to people with immune dysfunction. Often referral to psych. Wrongly so.
"Ask me anything about this case, I'll tell you if I can only get some answers."
Okay, let's find out. But most people give up after one day or so. They stop replying.
Here's a big hint: a well known and powerful pro-inflammatory biochemical is histamine. But Prozac was developed out of the anti-histamine Benadryl/diphenhydramine. The sleep aid Sominex is double dose diphenhydramine. (Diphenhydramine has sedative effects, so much so that "non-sedating" antihistamines were deliberately developed.) What I'm pointing out here is that anxiety/hyper-alertness is linked to systemic inflammation.
The initial pressing questions for you: what happened shortly before you got sick? And what happened for you in earlier life that was unusual medically (and the same for family members)?
This sounds similar to pains I had when I was using heavy stimulants, however your symptoms are much more serious. You need to see a doctor and if you're using, don't worry about telling your doctor because they have patient confidentiality