Hi, you've been suffering a lot, so I'll try to go the extra mile to help.
First off, there's not much reason to suspect a lymphoma.
Does a normal CBC rule out infection? No. Chronic or reactivated Epstein Barr virus wouldn't (and that can also harm the liver, btw). Did you happen to have very severe mono back when?
What is very surprising is that you don't mention any ultrasound results. None were done? That could explain why you are having *severe* node pain, which is not usual.
After this, things are very complicated. There is no easy answer. Each specialist will only see their own specialty. I'll suggest to you that the best way to proceed is to assume that everything has the same root cause - and that includes the back issues (unless the cause there was some accident or other trauma).
Were you tested for Lyme?
Do you have a family history of odd immune system dysfunction? Lupus, Raynaud's, Rheumatoid Arthritis, anything like that?
Where are you located? It's hard to believe that a doctor (your 1st one) would think that supposed lipomas are painful - and thereby just dismiss your complaint.
Okay, fc, I will be glad to go back and forth with you... until you get burned out :) Most people get burned out and quit, anyway.
So let's see if we can illuminate some things. You seem very sharp and capable. And motivated, and methodical. Hopefully,, you will find it useful to have someone to thrash things out with.
"I had mono as a teen"
But was it severe? I'm getting at whether you might have a hyeractive immune system. By far, most mystery cases turn out to be some immune dysfuction. The immune system can do almost anything. Let's include any mystery infection in with that.
But if not immune, then a rare genetic problem. However, you do have that accident, which needs some thinking. That might be paramount.
Did you have any health oddities before the car accident? That's important.
"in 2019 while on propranolol for hypertension"
HTN because of the pain? Or some mystery reason? You're not overweight. What is your age? Again looking for possible immune dysfunction.
"My fingers turned blue. It happened a few times so Neuro said it was Reynaud's."
Well, maybe.
As far as hypothyroidism? We might think that instead of hypoT causing enlarged nodes, that instead the same immune process that causes hypoT might cause other symptoms as well. If you follow me?
"I live in rough conditions in an RV on a friend's property."
You seem very brave. Were you in that situation when the unexplained neutrophilia happened?
"immunotherapy for environmental allergies"
Aha, there we go. Allergies were severe?
"Sorry for the data dump."
Oh no, not at all. You are what is called "an interesting case", if you don't mind my saying. :) Of course, that's bad for you.
"I'm just trying to narrow down where to focus."
Yep, that is wise. Are you familiar with the diagnostic principle of Occam's Razor? I.e., looking for a common cause to everything. However with you that might be 3 causes: overactive immunity, exposure to pathogens, and the accident trauma (and your physiological reaction to that might involve overactive immunity).
"Thank you for your assistance."
You're welcome.
More to follow...
Let's delve into how nodes can be painful.
As a reactive node expands (because of immune cell proliferation to fight a real or imagined invader), it presses out into the enclosing capsule (membrane). Sort of like being a sore pimple. The tenderness/pain also involves inflammatory chemicals like Substance P and Bradykinin.
OTOH, a cancer in a node tends to grow right through the capsule. So there is not the same pressing. But a cancerous node can atypically have pain if there is internal bleeding into a "necrotic center". The blood buildup presses out. Necrosis = dead cells.
Severe pain, though, is not usual. An ultrasound might show why. The US can show more than a CT or an MRI, it is superior even though cheaper. If a US shows probable cancer, then a needle biopsy can be done to confirm. But I don't think you should want a US now - unless it was free.
One key to your mystery is why your node pain is severe.
Btw, can you or any doc tell if they are more oval or rounded? What is the largest size? L x W
"Sometimes I wake up sweating."
As you know, lymphoma is a cancer of immune cells. The cells are deranged. But while night sweats are a symptom of lymphoma, more normal immune reactions can also produce night sweats because they produce the same signalling biochemicals.
"the pain seemed to migrate lower from the low back to the buttock."
Are you aware of pyriformis syndrome? If that's a possibility for you, you can take measures to avoid aggravating it.
If anybody comes along in the future with a similar situation, I'd suggest the following.
Many of the symptoms might be resulting from very excessive stress, both physical and psychological. Heavy stress can affect the thyroid. It can affect blood pressure, not only from andrenaline and similar, but also from the aldosterone which is secreted by the adrenal glands.
The slight liver problem might be from chronic or reactivated Epstein Barr virus, or from tick borne Babesia, which is a common co-infection of Lyme but can also occur independently.
I'd asked about geo location because the lack of action by the first doc seemed as if this might be in someplace like Costa Rica. But in retrospect, this is a very complex case and so I can't blame the doc for his "above pay grade" comment.
There is an approach called Functional Medicine which seeks to discover *why* the problems are occurring, rather than merely identifying and treating the symptoms separately.
There's also an unusual approach called evolutionary Medicine which would argue that most of these symptoms can be treated with plants, since that's what we evolved with. Maybe true, maybe not.
I realize that many of the things I might say to you, you already know. But there is one glaring omission in your narrative: you never mentioned 'mast cells'. It's especially glaring because you have anaphylaxis. I could write volumes, but stop me if you already know a lot about them.
I'd regard every doc as a potential threat to you. Because they might unthinkingly prescribe something harmful.
I'd be wary of any prescribed MABs. monoclonal antibodies.
Yes, some docs will unthinkingly regard you as possibly drug seeking. ["For some reason, they seem to get stuck on this --- almost every single Dr."]
I have no doubt that very many suspect you of needing a psychiatrist. That is what so many **wrongly** do when they can't figure out a patient's problems. It is very common in mystery cases. Very common.
There is more than one person I've talked to on this forum over the course of years. So don't think it's any kind of burden.
Yes, everything does come down to your immune system. So I'd say that the goal is to be as anti-inflammatory as possible. We can talk about the ways to try to do that. Self help.
Btw, if the neutrophilia ever returns, I'd most definitely try frankincense (boswellia serrata). It's a 5-LOX inhibitor, which means it inhibits Leukotriene B4, and is probably the only OTC one that exists. LTB4 makes neuts go crazy.
Do you ever get unexplained skin flushing?
Yes, it's crucial to avoid any position or activity that makes the leg pain worse. Trying to tough your way through it is the worst thing possible, as that only increases the inflammation.
And yes, all your docs are looking for horses but you are the quintessential zebra. Even more so than Ehlers Danlos is. Btw, mast cells might cause EDS and other CTDs.
A hyperactive immune system might be protective against cancer. If the 'killer' cells are hyped up.
I hope you soon get a big lump sum from SSI. Then you can go past mere CRP and test for IL-1. CRP is for acute inflammation. IL-1 and others can be high in *chronic* inflammation. There are worlds within worlds, beyond what you have been tested for.
Auto-inflammatory (zebra) is different than auto-immune (horse).
Weight loss from advanced cancer (cachexia) is when the body is deconstructing itself. That is very different than when a person isn't getting sufficient calories, usually from GI distress -- or they might not be absorbing the calories efficiently.
Leg nodes: are you walking around outdoors without shoes?
Menopause? That doc might be right, though they probably have no idea "why" they are right :)
Women are 3-4 times more likely to have immune problems than men. Yet it's not unusual to have long standing immune dysfunction get better during pregnancy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6501433/
"Autoimmune Disease in Women: Endocrine Transition and Risk Across the Lifespan" 2019
But note that they don't mention mast cell disorders (auto inflammatory) there, because of the fixation with autoimmune conditions.
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So let's go off the beaten path of PubMed and look elsewhere for info about MCs. A lot of naturopaths are flaky, but this one doesn't seem to be:
https://mastcell360.com/estrogen-dominance/
"...did you start to notice an increase in symptoms once you started going through menopause?
That increase in mast cell activity could be the result of estrogen dominance."
She has Mast Cell Activation Syndrome (MCAS) herself. Sources like her MIGHT have valuable thoughts that can help you. In the end, though, you have to be your own Sherlock Holmes.
Btw, are you aware of low histamine diets? Your adhesions might have been spurred by general abdominal/intestinal inflammation. MCs make histamine.
From her 'About' page: "After decades of seeing traditional health care practitioners, I felt like I was at the end of my rope. The medications often made me worse. Being given the wrong supplements didn’t help either. " Sound familiar? That is very very common with people who have immune dysfunction. You'll find that all over.
However, I don't see that you need expensive genetic testing at all. Do you need stress reduction? Of course, but that's harder for you than most to achieve because of circumstances. But then, you seem tougher and more resilient than most.
The next step is to know what to do about all this. For that to be pursued, you have to be convinced that we're on the right track. Hopefully, you're thinking, "how the heck did he know to ask about skin flushing?" :)
You have a Mast Cell Disorder. There are two types of that. Mastocytosis and Mast Cell Activation Syndrome (MCAS, which is much more common). We can zero in on which.
For now, have you tried histamine blockers? There are two types of OTC meds: H1 blockers are like Benadryl/diphenhydramine. H2 blockers are thought of as antacids, like famotidine and ranitidine. Do you have experience with those? (Those are not the same as Pepcid, which is a wholly different type of med.)
A second class of useful, plant derived OTC meds are Mast Cell Stabilizers. Quercetin is probably the most known. They stop the MCs from going off too easily and too powerfully.
Lots of progress can be made. Let me know what you think so far.
Can you use your fingernail to write on your sternum? Can you see lines? That's called dermographia. It happens because the mechanical pressure causes MCs to release histamine right there.
"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.
"Sometimes stress or just a long conversation does [the skin flushing]."
You have a pretty pronounced case. I'd guess that you are also high intensity, emotionally.
Niacin should also make you flush a LOT. Because it causes MC release. Since you get anaphylaxis, I'd avoid niacin.
I think the first goal is to stop the weight loss: by avoiding high-histamine foods, and by using OTC H1 and H2 blockers, and probably also using an MC Stabilizer.
Btw, "Brain fog" is usual in MCAS. It can come and go. Don't think that it's anything like brain degeneration, it's brain inflammation.
Also btw, there are sleep aids like Sominex - which are just diphenhydramine/Benadryl. Histamine operates in the brain, and is a wakefulness biochemical.
Another btw, diphenhydramine/Benadryl led to the development of Prozac.
Do you agree that it all starts to fit together?
And yes, there is such a thing as--> acquired post inflammatory hyperpigmentation.
Well, I don't know what else I can do but offer a summary.
You have a highly overactive immune system. It reacts wrongly to too many things, and reacts too strongly. On this forum, the vast majority of people who came with a fear of lymphoma actually have overactive immune systems. (With you it centers on mast cells, the same cells that produce anaphylaxis.) If they would have had a cancer, it would have been found before coming here.
I'd ask every doc of yours if they know about MCAS (Mast Cell Activation Syndrome). If/when they say "no" then that pretty much explains things.
The biopsy is looking for what, cancer? They're going on expensive fishing expeditions because they have no idea what else to do. Imagine if an auto mechanic says, "I'll just start switching out parts and hope that things get better somehow." There is little attempt to understand *why* things are not working right. I could point you to video talks by MDs who say the same things that I'm saying, they are of course rare.
So the pathology report will say "no cancer cells detected". Nothing whatsoever is gained.
The internet is filled with patients who say that they'd spent years going from specialist to specialist, sometimes across the world. 90% of them end up knowing they have immune dysfunction.
But yes, there are also people who haunt the internet saying, "I pushed and pushed my docs and they finally found my cancer. So everybody else should do that, too." That's like someone who was struck by lightning going around saying that it happens to everybody.
You don't really need to visit expensive functional medicine docs, or naturopaths. All the info is there online for free. Besides, most functional medicine docs and/or naturopaths are just plodders anyway.
"What do corticosteroids do with mast cell disorders?"
Mainly: antagonizing IL-1 which is sort of the granddaddy of pro-inflammatory molecules. (Everything is "sort of", "maybe"--- and especially "usually" which you already realize as with the adult scabies. There are no absolutes, except for sometimes.)
But pred/dex et al. have too many long term sides which are bad, so there's a hierarchy and the lessers are DMARDS like methotrexate, and lesser yet the NSAIDS (COX inhibitors). The more powerfuls are usually the biologics like anti-TNF Humira.
But you should probably be mainly interested in plants, like the red-purple polyphenol anthocyanins (tart cherry, prunes, pomegranate, etc), and the phytosterols. Also MC stabilizers like mint and maybe ginger. Quercetin was demonstrated by Theoharides (the granddaddy of MC research) to be more effective than Rx meds. Then there's frankincense (the only OTC LOX & leukotriene-LTB4-neutrophil inhibitor - but, there's also the more expensive myrrh). Which have I overlooked? IMO, turmeric is overrated.
Bad gut bacteria make pro-inflammatories, so you can try to kill, starve or out-compete (with probiotics) them. Naturally enough, plants make anti-microbials, because they live outdoors in the dirt. But I'd be wary of the usual typical trendiness-of-the-month, whatever is being hawked by health-food-store types. There is so much useless hype.
What's often spoken of in inflammation is linear cascades, but I'd think of it more like the Mississippi Delta, all intertwining.
So you have many possibilities, fc. One might be magical for you as an individual.
"...swollen area (not sure if it is a lymph node) in my abdomen and I've experienced some constipation.
Just 2 months ago I had terrible abdominal cramps, pain, some bleeding."
So what is healthy food? How about home made sauerkraut? Since you very possibly have sensitivity to ingested histamine, sauerkraut would be bad. But you never know unless you try.
People who are sensitive to histamine (let's call it HST) can use DAO, the enzyme which breaks down HST.
Evaluate whether amines are triggering your migraines.
Btw, I see nothing wrong with high fructose, except for over eaters. You need easy calories.
Oh, and compare yourself to pictures of urticaria pigmentosa. Make sure to tell me if you match or not, that relates to having MCAS vs the more severe mastocytosis.