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.
And yes, there is such a thing as--> acquired post inflammatory hyperpigmentation.
"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?
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.
Oh, it's NEJM, not JAMA.
It's used to be Free Full Text, I think. The idea here is that if NEJM publishes something, it's very very peer reviewed and wouldn't be anything flaky or fringe. So **any** doc takes it much more seriously.
Plus with your brown spots, we haven't ruled out mastocytosis. Maybe.
I would try fresh-off-the vine tomato, a little bit on an empty stomach. AFAIK, tomato doesn't contain HST, but it has lots of histadine which requires bacteria to turn it into HST over time.
If you can be relentlessly self observing, what you discover is better than anyone's list of good vs bad. Plus, most people just want to have some magic pill and minimal mental effort - but I think you can relentlessly do what you have to do to overcome. Be a Terminator :) That's what I mean by 'perfect patient'.
Soybean oil is anti-inflammatory (because it has phytosterols), and is inexpensive and of course has high calories. But it's mainly PUFA, not MUFA as in avocados. Maybe you want/crave the MUFA, which is more in olive oil and somewhat even in inexpensive canola.
What would an MCAS specialist prescribe? They can all be OTC in the US:
- an H1 and an H2 blocker
- an MC stabilizer
- come back in 2-6 weeks and we'll see how you're doing
- also a low HST diet
- also avoiding intake of anything that suppresses DAO synthesis, and meanwhile taking vit C and Mg etc that are needed for you to make DAO
- also promoting the *other* enzyme that breaks down HST, but that one works in the blood, not in the gut. That would be anti-insomnia, among other benefits.
fc, you could be the perfect patient with the best chances of stunning improvement. You might end up giving talks to other patients one day, no kidding.
'There are "phases" I seem to go through, or cycles'
Now we need to be more verbose.
There are times when your baseline level of inflammation is higher. From an allergy season, from a common cold, from stress, from anything that provokes an immune response. In you, that response is exaggerated and at times is self sustaining in a vicious cycle.
Why stress? If you see a bear in the woods, then your chances of being injured, bleeding and needing immune cells goes way up.
Lack of sleep prevents the lowering of inflammation that the body wants to do during sleep.
The gut can be a big, bad source. Esp if lots of Abx were taken in the past, which wiped out good microbes and let bad ones then take over.
So besides avoiding the triggering of acute flares, you also want to lower your overall daily baseline of inflammation.
Time of day influences it, too.
All of that is simplified, of course. But it's like a rain barrel overflowing. If the level is high to begin with, then when a rain comes it overflows more easily.
But it's not all bad, as being high intensity has its own rewards. Lots of them.
Present estimates of MCAS prevalence are ~17% of the population.
There is a large overlap of symptoms between MCAS and long Covid. Also with adverse reactions to the mRNA Covid vaxxes, though that info of course is being mainly ignored and even punished.
For dosage of quercetin? Start small and work up. As ever, with anything you try, because you might have a bad reaction to anything.
Oh, and always check with a doctor before you ever do or think anything, blah blah blah... In some countries, they might even make you get a prescription to buy vitamins.
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.
A capsule is an enclosing membrane of connective tissue. Related to your multiple herniated and bulging discs? Probably. Also to EDS. Did I ask about hyperflexible joints?
Afrin's theory is that MCs shepherd over connective tissue formation, and errant MCs make errant connective tissue. There are some other official "Connective Tissue Disorders" as well.
There are two very separate matters for you:
For SSDI, I'd go full out with CFS. You luckily got that Dx, so your next step is to prove severity. Btw, CFS has been renamed to emphasize PEM; so you should, too. But proving MCAS is much harder, mainly because it's newer -- and mixing in MCAS with the CFS Dx would harmfully muddy the waters. Changing docs now might be bad, I'm not sure. SSDI wants clarity, to weed out fakers. Not a hodgepodge.
Next, leaving bureaucracy behind and focusing instead on getting better, forget all that above and focus on MCAS. CFS is just a syndrome, which means it's a bunch of symptoms and we don't understand what it really is or what to do about it. It's also heterogeneous and some guesses are that it is MCAS, or gut dysbiosis, or post viral syndrome, or some chronic mystery virus.
I'd avoid that oblivious doc. Though he's correct that dysbiosys is important, he shouldn't ignore everything else. Expensive herbal brand names? More odd obliviousness, especially for you as an individual. Who says those are better than any others anyway? But yes, I think I had mentioned peppermint to try. Mast cell stabilizer and antimicrobial.
I would definitely gravitate to the woman doc, about MCAS. She might even think that with you as a star patient, she can become the local top expert on MCAS. "MCAS is seen by many docs, but recognized by few."
Here is that great vid with Dr Tina Peers https://www.youtube.com/watch?v=ipLDkDR56Lg
She talks about dealing with unaware docs in her own life.
I think you need to eventually look for an individual doc that is like her in attitude, not for a doc in any particular specialty. From what I've seen, most allergists are only obsessed with skin prick tests. Probably most Rheumys know little about MCAS.
I'd only mentioned IL-1 to show that there are many tests for the many different kinds of inflammation. Testing for IL-1 would not be that helpful for you, though. Or if you found a diamond in the swamp, then maybe I'd think of that expensive inflammtory panel that Dr Bruce Patterson sells. But some have that and it's not a great breakthrough, so it's not like all would be peachy if only you had this or if only that...
Yes, famed Dr Afrin says a lot of his MCAS patients get cracked teeth. You can probably get his book inter-library loan, but it's mostly a litany of patients and their varied symptoms. Or sample it with Look Inside at Amazon. Or websearch for bloggers discussing him.
Spindle cell non encapsulated lipomas tend to have lots of MCs inside. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4530169/
There is such a thing as doctor-created depression. I think I heard that from Dr Donohoe in AU.
"Flushing started during the consult, which I thought was fortunate timing.
Oh yes, but wasted on the blind. Rockets red glare.
Somebody needs to look into any alternative Tx for the painful lipomas. If that exists.
"your body should be making sufficient steroids internally to help you function."
Oh really? Then no one would need an Rx. I hope that's not the trite 'adrenal exhaustion' nonsense. But yes, being anti inflammatory is very much what you need.
"I'd rather not spend money on something that is growing outside."
Yes, that's a real thing.
"Mitochondrial Energy Booster"
I don't know if I buy the mitochondria angle. Many have tried ribose, etc., without any benefit. You shoud spend your limited resources on what has the best chance.
"I'm so frustrated."
Yep, and you are one of many. When you have a mystery condition, then stardard medicine doesn't do much for you. They are very good at what they know, but not this.
Teeth problem has nothing to do with cavities.
"New hearing will be scheduled soon..."
If your lawyer didn't start with a Dx of CFS, then what were they planning on saying? I hope it's only 'pay them if you win'.
"what particular combination of symptoms would jar them from CFS?"
You need a standard Dx, not convincing whoever hears your case that you have an unkown but very debilitating illness. They are paper pushers, not mystery solvers. But that's just me guessing.
CFS is nebulous but AFAIK not as new as MCAS. There are pitfalls with MCAS Dx. E.g., the standard is testing for tryptase, but many with actual MCAS show negative on tryptase blood testing. The sample needs to be kept cold by techs, but often isn't. Or the blood is drawn at the wrong time. [In a perfect world, the docs would have taken blood when you were flushing right in their office.]
"If I resort to cold calling from the "yellow pages", would I have more luck under rheumatologist, allergist/immunologist or endocrinologist?"
Maybe here: https://tmsforacure.org/resources/finding-a-physician/
Or do a websearch for--> MCAS doctor in your area.
" mild reaction to contrast dye. It may have been after a CT"
Certainly say that before you get another CT. Often the 2nd or 3rd exposure is much worse in any hypersensitivity reaction.
"I'm on a mission."
Perfect. I'll help you as much as I can. So many people have been here, I knock myself out replying; then they just silently go away without a word.
mastcellmaster is the Theoharides I'd mentioned. I've got another ref for you, from JAMA which is ultra *authoritative* - for mastocytosis. BRB.
...and long Covid might be post-viral MCAS. Hearing that might perk a curious doc's ears up.
Strawberries have fisetin, which for some seems to be a better MC stablizer than quercetin. Powders of either will have much more content than foods, though.
"today... communicate with the resident dr..."
Oh well, I wish I had known that. You won't see this before then. But I'd focus on the dermatographia (aka dermographia) and the flushing episodes, since they are more specific. Yes, MCAS can cause enlarged nodes; but so can a zillion other things. If it was me, I'd de-emphasize all investigations into nodes and/or cancer - since that is just diverting limited resources of docs' time, etc. from the real cause of your problems.
Only after discussing those 2 specifics, I'd next bring up that bad episode you had with the high histamine food - as a way of nailing down the Dx.
You also need an 'authoritative reference'. Here's a recent one, older stuff should be avoided since researchers were stumbling around. E.g., any insistence on serum tryptase testing is possibly harmful, because there are many false negatives (refrigeration is required throughout, but often not done - plus serum levels are not constant anyway).
'Diagnosis of mast cell activation syndrome: a global “consensus-2”'
The 'first author' Afrin is well known in this field, because of his talks and book. Unfortunately, that's probably not a high impact journal - but better than nothing
Just FYI, many women who are pregnant have their MCAS disappear for the duration. Other women say their CFS disappears - that's likely because their CFS is MCAS.
There's a really apt saying about MCAS patients going to doctors: Many are seen, few are recognized.
It turns out that DAO is very expensive. So here's a possibility: https://healinghistamine.com/blog/dr-joneja-natural-diamine-oxidase-for-histamine-intolerance/
Sprouts raised in the dark. (I've kept this very short since there's no indication of being read.)
Well, comparing your photos to urticaria pigmentosa is equivocal, I guess. Maybe online photos are mainly of severe cases of UP. But keep this in the back of your mind.
How can MCs cause pigmenttion? They have mediators to stir up other cells, like melanocytes. They also can summon cells by using chemokines. Likewise they can summon and stir up fibrocytes, as with your adhesions.
"some narrow lines like a pencil mark"
"The dermatologist said the discolorations were unrelated to scabies"
That made me LOL :)
"It is almost impossible to find a curious mind. I'm grateful and cautiously optimistic. (I know, I still have lots to do) Thank you"
You are very welcome. The only way this can go badly is if you give up. So don't give up. That typically is when somebody says, "I have a doctor's appointment coming up, I'll just wait for that."
If you feel like your head is going to explode, you are doing this right :)
I only type out about a third of what I could say, because there is so much to address. So let me switch to a more clipped staccato mode, for efficiency sake. I'll leave out words like, "Well, I think maybe you possibly should..."
and instead just say, "Use quercetin capsules, you can't eat enough q containing foods. But still eat the food." It's being fast, not imperious, okay?
Your best immediate course is to immerse in a low histamine life. Check every food, and sites can disagree. Also avoid anything that inhibits making DAO, like alcohol. You should become expert, and with your mind that should be easy for you. Buy and use DAO. If this produces quick and large benefit, you will be super motivated to go on and on.
Forget everything you know about 'healthy eating' for now, your needs are separate and specific.
Liquid calories are usually best for not losing weight.
Your MCs might not like having a very full stomach, so eat frequent not large. Your MCs probably didn't like your belt pressing on the scabies on the waist, so your reaction was MORE than the dermatologist knows about.
"The role of mast cells in treatment of scabies" 1995
"sepsis in 2018"
probably MC related. Their role is to be involved in almost everything. HST makes linings (as in urinary tract, etc) more permeable, so bacteria can inadvertently get through to circulation.
"brown rice colitis diet"
probably should have been a low HST diet
"I happened to imbibe in A&W"
root beer? sucrose is excellent for peri-workout
if you didn't get it, then great! that's good luck. unless they suspect an infection and are looking for that. but it's probably just a cyst from MCs. There was some other thing where you retained water (weight gain from systemic edema?) MCs make for capillary permeability.
"I used a butterfly closure"
your toughness is a great asset because you have to save yourself, no magical MD or PhD or ND with a magic test and magic pill is around the next corner.
"After caloric needs are met..."
peanut butter and jelly sandwiches are better than 'healthy vegetables' (unless sugar stirs up gut yeast)
"...the histamine question is even more complicated"
You might learn it well in a week.
"I absolutely love avocados"
So let's figure what is in it that is so appealing and try to maybe get that elsewhere
"oddly enough, not emptying my bladder when I should"
Probably MC's sensing the pressure but also any acidity and/or other irritants in the urine. There is such a thing as sterile cystitis and doc might Rx an Abx when there is no actual infection.
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.
"...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.
"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.
"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.
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.
"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.
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:
"...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.
Leg nodes: are you walking around outdoors without shoes?