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Normal CBC, TSH, multiple painful lymph nodes, neck, legs, arms increasing in size

2 years ago, I first brought to the attention of my GP painful lumps mainly in my legs. He didn't examine them (early covid days) but said they were probably lipomas given I already have some at my ankles. At another visit, I insisted he look because the lumps felt different than lipomas and they were getting bigger and more painful. There were some in my arms at that point as well. He was not impressed but noted it in my chart.  
GP retired.

Two years later I've lost 12 pounds (10% of my body weight) without trying. Also have hot flashes and night sweats but I'm 53 y/o female and perimenopausal so chalked that up to hormonal changes.

However, in the past month I noticed pain when swallowing. My neck has some tender areas and slight swelling. I'm not sleeping well so I'm tired all the time. Sometimes I wake up sweating. Not much appetite lately. Often light-headed and irritable.

New GP examined the lumps and confirms they do not appear to be lipomas, but lymph nodes and ordered CBC & TSH labs. She also ordered CT of the thyroid since that seems inflamed and tender in some spots.

She said it is most likely infection or thyroiditis but considering weight loss, increased size of lymph nodes over time, etc, she said we need to rule out cancer.    

CBC was normal. TSH3/4 also normal.
With a normal blood work I would think that rules out infection, thyroid AND cancer, no?
Or is it possible cancer is still on the table?

CT of thyroid was done but waiting for follow up visit to get results.  

Specific areas where nodes are noticeably enlarged and painful are: behind knees running up back of thighs, inner elbows, neck. There are a few areas of increased skin pigmentation that have appeared over the past few years (face, arm, forehead). There appears to be another 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. GI doctor suggested diverticulitis although I never had that before. He rx'd antibiotics and a colitis diet of brown rice/potatoes, etc and it seemed to resolve in a few weeks. My typical diet is relatively healthy (mainly organic or home grown vegetables, very little packaged or restaurant food, occasional non-caffeinated soda).  

In the past month my ortho rx'd a course of prednisone for pre-existing back pain (failed SI fusion, waiting for treatment plan and possible revision surgery). That did not happen to affect any of the lymph nodes and although in the past steroids have provided relief from back pain/inflammation, this time they only seemed mildly helpful for a day and a half.  

There are other painful lumps forming in my legs which do not seem to correspond directly to the lymph nodes, mainly in my calves and thighs. It's terribly painful mostly at night. I can't feel the definitive outline of these as I can the obvious lymph nodes but if pressing hard enough I can feel the lump.


Confused since the lab results seem normal but symptoms are getting progressively worse.
WBC 9.3, RBC 4.67, Hemoglobin 14.1
Platelet count 425, platelet volume 10.6
Neutrophils 6.3/ 67.8%, Lymphocytes 2.2 / 24%, Monocytes 0.5/ 5%,
Eos 0.2/ 1.8%, Basophils 0.1/ 1.2%, Immature granulocytes 0.02/ 0.2%
TSH 0.53   T3 3.82    T4 1.17

For reference, 2019 TSH w/Rflx FT4 was 1.9 (don't know if this is helpful or not)

In 2019 my AST/SGOT was low: 8. This has not been rechecked since (yet, anyway).
In 2020, ANA was normal, CRP 3
I know, these old numbers are pretty useless without updated tests.

Any insight appreciated.

(NOTE: I have multiple herniated and bulging discs. Failed SI fusion. Spinal cord stimulator implant in place since 2018 in case it's relevant)
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1081992 tn?1389903637
COMMUNITY LEADER
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.
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Doctors are generally good at handling things that they already know how to do. They do pattern matching, form a Dx, then apply the 'standard of care' Tx. They do not figure out new things.
1081992 tn?1389903637
COMMUNITY LEADER
And yes, there is such a thing as--> acquired post inflammatory hyperpigmentation.
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Now this triggers a memory.  After an awful case of scabies in 2017 I developed brown spots wherever the itching and lesions occurred. I have them all over my face, front, arms, abdomen and back. Never had that happen before. The dermatologist brushed it off but I thought it was unusual. The spots never went away.

The dermatologist was very dismissive. She was convinced her course of treatment would work and when it didn't she was angry because she was a doctor for 28 years and it ALWAYS worked!

She also informed me that scabies never occurs on the scalp. Well, I got it on my scalp. Of course, scabies does not USUALLY occur on the scalp of an adult but I have particularly sensitive, dry skin, probably enough akin to that of a child. Children can get scabies on the scalp easily so it seemed possible to me.
("Usually" is an important qualifier that some people miss)

To her, it just didn't seem possible so she decided it was dermatitis and not scabies even though a week later I brought my roommate in to whom I  had passed scabies. She was not pleased.  

The other issue is that she prescribed permethrin but it did not work. She then prescribed a small amount of ivermectin. I tried to explain that we  did not have a typical home with washing machine and dryer. We needed to throw everything at this at once. We were living rough in a camper and I had just had major back surgery.  She was not getting it through her head and yelled at me that she had been a doctor for 28 years, and that she always prescribed the same thing each time and that it always works. ALWAYS
...
I was tempted to ask if she had ever heard of resistance, or evolution, but I didn't.
I convinced her to just humor me and prescribe both permethrin and ivermectin at once and that did it.
The two lessons for anyone encountering this are:
1- words mean things. If a disease doesn't usually occur in a population, then that means it CAN occur in that population with certain conditions.
2- not everyone lives the same way. Even the word "exercise" can mean 29 different things depending on who does it.
1081992 tn?1389903637
COMMUNITY LEADER
"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?

Helpful - 2
1081992 tn?1389903637
COMMUNITY LEADER
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.

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Funny you should mention this.... I buy diphenhydramine in bottles of 100 or more capsules and alternate with hydroxyzine merely because the latter is available from time to time free through a private prescription charity.  

Typically I use it for itching, rash, (post-allergy shot reaction, insect bite reactions which can be quite severe, or when I eat something unexpectedly reactive). For example, I ate chicken at a restaurant and my friend asked if I was feeling alright and in fact I felt flushed. My chest and neck were splotchy red. So, I asked the manager if they prepared the chicken where they also prepared fish, and they did. I am allergic to fish-with-fins. I had to take 2, 25mg benadryl to stop the reaction.  

When younger, I took both famotidine and ranitidine but experienced too much oral dryness and tooth decay and loss.  Perhaps not causal, but since discontinuing it seemed to slow the tooth decay.  I hadn't heard of Quercetin until recently and just acquired some. I will give that a try.  Luckily, Quercetin is in some of the foods growing just outside my door like onions and berries and I have been taking full advantage of that as often as possible.
1081992 tn?1389903637
COMMUNITY LEADER
Oh, it's NEJM, not JAMA.
https://www.nejm.org/doi/10.1056/NEJMra1409760?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed
2015

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.
Helpful - 1
1081992 tn?1389903637
COMMUNITY LEADER
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.

  
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1081992 tn?1389903637
COMMUNITY LEADER
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.


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1081992 tn?1389903637
COMMUNITY LEADER
'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.


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Ah yes, lots of things are verboten these days. I started out studying chemistry long ago & briefly worked in public health 2009/2010. (If not for unfortunate circumstances I'd be in a lab somewhere.) My stint was during H1N1 so I'm well versed in EUA, the different flavors of fact sheets and contraindications (which have all but disappeared).  

Medicine is an art. It is practiced, not performed. We're not Legos. AE may be monitored but should be acknowledged more readily. That might help. It's like finding your 4 yr old smeared with chocolate and covered in crumbs. He denies eating the cookies over and over but you know what you are looking at.  

I appreciate the staccato - it's faster. Usual disclaimers acknowledged. My mileage may vary, etc.

"Your MCs might not like having a very full stomach, so eat frequent not large."
Frequent, smaller meals are exactly my forte. I am a grazer so this will work well.

"Forget everything you know about 'healthy eating' for now"
No trouble there. The good thing is we acquired fig trees, apple, peach, mulberry, currant, berry bushes and started perennials like asparagus, artichoke, sunchoke and several beds with herbs so rosemary, fennel, sage, parsley, dill, bergamot, nasturtium, cilantro, lemon balm and more are available.  Too bad the strawberries won't do me any good.

I grew tons of peppers last year. Tragically, I do love tomatoes but it seems those will be off the menu. I'll deal with it to feel something resembling normal.

With avocados, it's the oil/ fat. I find that I'm often hungry unless I eat half an avocado every other day or so. I added black beans back to my diet day before yesterday. I hadn't had any since that last GI episode but I tolerated them well. I tried peanut butter today. So far, so good. That usually fills me up like avocados do. Maybe the oil/fat in peanut butter will fill the avocado gap. I always check labels, bordering on obsessively, so I'm sure that I get peanuts/salt and not any concoction with cottonseed or other oils mixed in.
1081992 tn?1389903637
COMMUNITY LEADER
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.
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1081992 tn?1389903637
COMMUNITY LEADER
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.
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This has happened but only occasionally. Under the right circumstances I can just brush against something and a line appears
1081992 tn?1389903637
COMMUNITY LEADER
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.
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1081992 tn?1389903637
COMMUNITY LEADER
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.

https://www.cdc.gov/me-cfs/resources/disability.html
https://www.riemerhess.com/wiki/can-get-long-term-disability-benefits-mcas


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."
Correct.

"pain hypersensitivity"
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.
https://www.disabilitylawfirmnc.com/social-security-disability-for-mast-cell-activation-syndrome/

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.  





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1081992 tn?1389903637
COMMUNITY LEADER
"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.
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Still here.
I've been recovering from trips to doctor appointments, one requiring 4 hours in the car. Pudendal nerve got very angry. That's new. I bring a foam pillow everywhere I go but this time it didn't help.

At my follow-up, Dr. resident was receptive. I asked if she's heard of MCAS and she said, "that's interesting -- I hadn't thought about that...." but then we were joined by another new attending dr. End of MC discussion.  
Introducing Dr. attending nbr 3, an Integrative Med MD. He did a quick exam but wasn't interested in looking at the spots on my back. He was very interested in GI history, previous infections/antibiotic RX and 2018 sepsis. He wanted to do a SIBO test but since no insurance he said he'll assume it is positive. We discussed drug/food allergies and sensitivities, supplements and low-fodmap.  

Flushing started during the consult, which I thought was fortunate timing.  I hadn't noticed but my legs were a bit purple/mottled red/pale as well. It stood out against several swollen pale spots from the previous day's mosquito bites. Once brought to my attention, I remembered seeing this before a few times, typically in the shower or right after. It somewhat resembled livedo reticularis -  but no lacy connections - just blotchy purple/red/pale.
Docs didn't seem concerned with it. They were focused on GI.
Does this ring any MC bells?



We briefly discussed the US. Report notes both lumps behind the left knee as either "poorly encapsulated lipomas or fat necrosis". Dr resident said, "good news, they only found the 2 lumps". I took a deep breath and gently reminded her that she only directed them to look at those 2 lumps, specifically. The pain I get at night in my legs (tearing pain, not the sciatica) is in my left arm now too. Probably another poorly encapsulated lipoma on the way...  
Of course we are leaving the lumps alone.  

So docs sent me home to wait for an email with a Tx plan. The email was headed by Chronic Fatigue Syndrome. I'm frustrated because the first time CFS showed up was in May after Dr. attending 2 RX Cymbalta (despite me noting previous issues with SSRI/SNRI meds). Granted, I experience some level of fatigue any given day due to poor sleep, caused by poorly controlled pain, night sweats and generally feeling crummy, but that episode from May was a new level of zombieland I hadn't experienced before.

Under CFS they noted that I have a "blown fuse" caused by burn out from major illness, multiple life stressors, surgery and sepsis/colitis from 2018 as well as gut bacteria imbalance and disrupted sleep rhythms contributing to fatigue.  They noted this is why I feel better with steroids and "your body should be making sufficient steroids internally to help you function." so I need a "reboot".

OK fine. Getting more sleep would be great and leveling out GI function would also be helpful, but that's like 8% of the issues.

For sleep, they want me to concentrate sedating meds at night and for gut bacteria imbalance I'm to continue magnesium and add Atrantil (expensive herbs) to "restore normal bacterial balance in the gut". The ingredients are peppermint, Quebracho Colorado and Horse Chestnut and it's pricey.  

Have you heard of this product?
I'd rather not spend money on something that is growing outside. I've got plenty of peppermint, spearmint and other herbs. I've got  several dried herbs and roots, including frankincense tears.



They said that later they will address the pain and headaches which they note is "pain hypersensitivity" which "amplifies pain signals in the body above & beyond what is appropriate." Down the road they want to add Vitacost Mitochondrial Energy Booster (so, vitamins and co-Q10, L-Carnitine, etc) and D Ribose and suggested I follow up with surgery & pain management.

If I find "that they are offering very little to reduce your pain, then we need to continue to look beyond biological interventions (pills, drills, injections)."

Gee, that sounds like we are entering the "it's all in your head" territory.  I'm so frustrated.
What part of "failed SI fusion", several herniated discs and disc bulges are inappropriate sources of pain?
I'm at a loss.

Does MCAS have any relationship to tooth loss? I found an old message board discussion about MC PT's teeth crumbling but IDK if this is officially recognized characteristic. Some thought it was due to the antihistamine use causing dry mouth. I've struggled with dry mouth all my life and have had a dentist or 2 tell me allergy meds can contribute. However, I have had permanent crowns just pop off, 2x in the last 5 years. The dentist said it may have been pressure from inflamed gum tissue that pushed on the crown so that the cement didn't set properly.

But, this keeps happening. I've had fillings just fall out within a year and teeth crumble. I lost a filling this week and the tooth next to that one broke. I gave up a 3 soda per day habit many years ago. I don't chew on ice or anything harder than a carrot. I use a sonic toothbrush, prescription fluoride toothpaste, brush picks, floss and a waterpik. Though I slack on flossing sometimes, at cleanings I'm usually told that I'm doing a good job of cleaning at home.  

In 2020 I had a crowned molar pulled. It crumbled so the dentist had to pull small bits out at a time and along with it he pulled pieces of my upper jaw bone. That led to several return trips to have the sharp edges trimmed, pieces of bone removed from the wound and stitches. Eventually, I wound up sterilizing tweezers and pulling out the last shards of bone myself. Anyway, I'm guessing these issues might be related?


Dx is just as important as Tx right now.
While there seems to be plenty of overlap between CFS and IBS to MC, I need to be properly and officially diagnosed so it is in my records. This is crucial or I am up a creek. No do-overs. New hearing will be scheduled soon and I need all my records up to date and accurate.

Other than bringing up MCAS again and potentially coming across as a hypo who searches Dr. Google all night, do you have any suggestions of what particular combination of symptoms would jar them from CFS? I did mention long covid but they weren't moved.  

I am not covered by the medical charity any longer so it doesn't matter if I stay with this clinic or venture out elsewhere, especially since I don't see the same Dr consistently there anyway. I ask every white coat I see if they have heard of MC. Not one has. One dr gave me the name of a new rheumatologist moving into the area but no idea if he has heard of MC either.

If I resort to cold calling from the "yellow pages", would I have more luck under rheumatologist, allergist/immunologist or endocrinologist?


You mentioned IL-1. Is this a simple blood draw? Or is this one of those special mail-across-the-country for several thousand dollars type of tests? Maybe I could ask Dr. resident/attending nbr whichever is there this week to humor me. If it's simple, and doesn't cost more than my car, and since there's no insurance company to get cranky over pre-auth, maybe this can be accomplished. From what I've read this isn't definitive but nothing is. Maybe it would be helpful -- or is that less impressive to achieving Dx?  

I keep remembering things that might be pieces to the puzzle. Moving and changing doctors didn't do me any favors in this regard. For example, I remembered around 2014 that I had a mild reaction to contrast dye. It may have been after a CT.

The reaction was mild, thought I felt light headed and nearly passed out.
Compared to anaphylaxis, I suppose everything else seems mild.  
1081992 tn?1389903637
COMMUNITY LEADER
...and long Covid might be post-viral MCAS. Hearing that might perk a curious doc's ears up.
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1081992 tn?1389903637
COMMUNITY LEADER
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).  
https://www.degruyter.com/document/doi/10.1515/dx-2020-0005/html?lang=en
'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


"hormones"
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.
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P R I N T I N G    N O W .......  thank you!
I also found this one: https://www.mastcellmaster.com/research.php  

I'm a mess. lol  Fits and spurts and still in a lot of pain so I type, lay down, return, clear the fog from my brain, then type.
Lather. Rinse. Repeat.
Happy about the berries. Truly. And definitely will try tomatoes and everything. I'm like that. I will just be more deliberate about anything others have found to be troublesome.
I'm on a mission.
1081992 tn?1389903637
COMMUNITY LEADER
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.)
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Excellent. I started sprouting a few years ago and have gotten the hang of with alfalfa so I will try peas and other legumes mentioned.  
1081992 tn?1389903637
COMMUNITY LEADER
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"
burrowing mites

"The dermatologist said the discolorations were unrelated to scabies"
That made me LOL  :)

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1081992 tn?1389903637
COMMUNITY LEADER
"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.
https://pubmed.ncbi.nlm.nih.gov/7538495/
"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

"almost biopsy"
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.
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The almost biopsy turned into an ultrasound. No report yet but the images of the larger and smaller lumps are here:
https://drive.google.com/file/d/1-magfeF8d_HQDFCiTdEmaD4UIGiOJeG9/view?usp=sharing
https://drive.google.com/file/d/1DzHJKYS7BDryUS2q09J6VZjrrDxqpbay/view?usp=sharing

My follow up is today. I hope that I can effectively communicate with the resident dr what I've learned here. She is a curious one but if attending dr nbr 2 is on site, we may be derailed. He is the "it's hormones, give her prozac" doc while the other one is open to possibilities and tests other than the Rx pad.
1081992 tn?1389903637
COMMUNITY LEADER
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.
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There are several areas of pigmentation on my trunk, face and arms. A few spots are slightly raised, but they do not seem to be similar to the examples of known urticaria pigmentosa.  

Around 2015, I noticed a spot on my face I thought was a large freckle. The next year a spot developed on the back of my hand. Then came scabies and dozens of dark spots (some round, some narrow lines like a pencil mark) developed where I had the most itching - beltline, under the bust and on my back.  As the scabies continued, more brown lines appeared.

The dermatologist said the discolorations were unrelated to scabies and DX'd seborrheic keratosis.
Over time, additional, larger spots developed on my arms, cheeks, forehead and back in addition to the thin lines that seemed to appear where the itching was located.

Tried to upload images to my profile but kept getting "500 Internal Server Error". Linking here instead:  
Arm   --  https://drive.google.com/file/d/1CrCwFUB7kYqR-2lj0tOC8TnCwIdlfwWS/view?usp=sharing
Back  --  https://drive.google.com/file/d/1Cvyvu-ugbZut3KFV0uEYxk-UX1iX75Rq/view?usp=sharing
                
The size, number and characteristics of my spots seem very mild by comparison to UP right?  
IDK if it's actually seborrheic keratosis either or scarring from my scratching scabies all of the above plus freckles.  

This example, however, looks similar to what showed up on my face a few days after the injection of Ajovy: http://mddk.com/wp-content/uploads/2014/12/urticaria-pigmentosa-pictures-2.jpg

Those were more like blisters and eventually went away.  



BTW the dermatographia, if memory serves, was related to Lantana allergy.
Wherever it touched my skin it left a trace.  

There are "phases" I seem to go through, or cycles where I can go outside in summer, get a few mosquito bites and I'll be fine, but another day I may go out for 5 minutes and after a couple mosquito bites I wind up with welts or my entire arm is swollen and I'm reaching for the epi-pen and Benadryl.

Then again, I just remembered that I had chicken pox at age 4, tonsillitis from age 6 off and on until they were removed at 26, mono at 14 and shingles at age 20 while I was pregnant and had active shingles during my C-section.  

Looking back, the cycles didn't seem to have many/any breaks in between.

I'm starting to feel relieved at the possibility of having some answers and at the same time a little overwhelmed and concerned about translating the progress made here to my IRL dr.
I have known that things haven't been right for - forever.  
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
1081992 tn?1389903637
COMMUNITY LEADER
"...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.
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My first batch of homemade sauerkraut was tasty but that's what I ate not long before I wound up with abdominal cramps and terrible pain. I could not eat solid food for a week. It wasn't "off" bc others ate it without any issues. The reaction was eerily similar to a bout of sepsis in 2018 that landed me in the hospital for several days with colitis and AKI. Seems to be a pattern.

My GI doctor put me on a brown rice colitis diet. I had to slowly add one food at a time until I was back to a somewhat normal diet. Good to know about HFCS.... I happened to imbibe in A&W already this week because of the road trip for the almost biopsy.

I definitely need easy calories in more ways than one. I wound up with 2nd degree burns last year trying to boil water and a couple days later cut my finger and couldn't drive to get stitches right away. I used a butterfly closure and when I eventually got a ride to the clinic, doc said my patch job was sufficient. After caloric needs are met the histamine question is even more complicated. I absolutely love avocados but they are high in histamine. I never heard of DAO but will definitely look into that.  

Migraines tend to be triggered by light (I'm extremely light sensitive), lack of sleep, hormones and stress, constipation and oddly enough, not emptying my bladder when I should. If I wait too long, that's it.
1081992 tn?1389903637
COMMUNITY LEADER
"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.


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1081992 tn?1389903637
COMMUNITY LEADER
"Often get [swamp] sand/dirt on my feet."
That probably explains the nodes in the legs, which had been a mystery.
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1081992 tn?1389903637
COMMUNITY LEADER
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.

----------------------------------

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.
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"Continuing down the road of inflammation  allergic reactions, "
While pregnant in the 1980s I was prescribed compazine for severe morning sickness. After a couple days I had a dystonic reaction that required a trip to the ER and IV benadryl. Quite an ordeal. The morning sickness was all day, every day for months. I was hospitalized for dehydration several times until month 5. I'd never had any movement type of issues before the compazine incident but since then developed RLS.  

DIET / Inflammation diet
In 2018 I started from zero when recovering from sepsis so I went from strictly clear fluids and IV at the hospital to adding one thing at a time. If I run into trouble or go too fast I switch to elimination diet to see what seemed to be the trigger. I have a core group of items that I stick to that seem to agree with me. I haven't been able to find a reliable source for inflammatory foods though. Most websites are trying to sell something or give conflicting information.  

Sometimes, due to circumstances, I don't have much of a choice in what I eat. I rely on charity for groceries so there if I have flour tortillas and english muffins, I just don't eat too much at one time.  Basically I avoid dairy and tomatoes and cut out all high fructose corn syrup, caffeine, food in boxes unless there is no alternative, etc.

ALT Practitioners
I looked into naturopaths and functional medicine but the prices are currently beyond my budget. I understand what you mean about the dr, (let's call him attending dr nbr 2) but it is frustrating how they get distracted by squirrels (menopause) or just want to throw pills at me. I have been worked up by neurologists, psychiatrists and psychologists and given every SSRI, SNRI there is as well as other mood regulators for migraines and later for the back pain with usually terrible results.  As for psych Dx, it has consistently been anxiety and depression tied to the unrelenting pain and my life being turned upside down.

RX
I took the cymbalta even though I didn't want to. I tried to keep a positive outlook hoping that it might not have negative effects but after a few days, RLS reared its ugly head. I was not been able to stay awake for more than a couple hours at a time and when I was awake I had to constantly kick my legs. It has been absolutely miserable. More than usual. None of the other symptoms changed.

Attending dr nbr 1 (the one who isn't distracted by squirrels) agreed to discontinue cymbalta. After stopping cymbalta the RLS calmed down and I can stay awake - actually I am back to not being able to sleep much. The night sweats  are still a thing.

The nodes are still swollen (neck, arms, groin, legs, both sides and possibly one center of abdomen above navel) and I have pain and soft swelling in my calves and thighs. It's a burning, tearing pain mostly at night but sometimes during the day. It is scary.

There is still chest pain radiating from the center from time to time. If I forgot to mention, ECG was normal (although one line was out of whack the resident said it was probably because of how the leads were connected). She thought the chest pain might be pericarditis from sep 2021 covid infection. However, this chest pain seems to be a similar caliber and character as the pain in my legs and groin.

The groin pain started a few months ago. It radiates in 2 or 3 lines in the exact same pattern each time from my mid inner thigh up to my saddle region/pubic bone area just line the chest pain radiates in the same pattern from the center outward.  

What it feels like to me - for what it's worth - is that my lymph nodes or whatever is growing are increasing in size, perhaps with waxing/waning inflammation which from time to time applies pressure more or less on nerves causing radiating pain.

Whether related or unrelated, there are pockets, like bursitis that seem to be getting larger and increasing in number in my legs as well. Maybe since my lymph nodes are still at the same size or larger, for whatever reason things are not draining properly so fluid does not know where to go and just piles into various pockets.  

I once gained a lot of weight in a short period of time from one prescription or another and I could feel my skin tearing as stretch marks were forming. The pain in my calves and thighs that occurs at night (burning, tearing) feels of similar character to that but without the stretch marks and without the weight gain.

The various lumps that seem to be adding to my legs seem like softer and larger lumps than the those along the path of the lymph nodes. They seem almost like they are filled with fluid or gel, not characteristic of adipose tissue anyhow. Attending dr nbr 1 and resident dr examined these and their opinions are these are not lipomas.  

Also I'm down another pound despite making an effort to eat more.

So I went back to see Attending nbr 1 and resident dr and they are sending me for a biopsy tomorrow of one of the nodes in my leg. I do not know if it will be a needle biopsy or if they are taking one of them out or what.

You asked about shape/ size of the nodes.... so far most are pea to marble sized. The ones which are causing me grief are 2 behind my left knee that are marble sized, round to semi oval, semi firm. One is close to the surface and one is rather deep and very painful as it is close to my sciatic nerve. When I touch either one, the bottom of my left foot feels pressure and heat as well as additional buzzing/ tingling. My left foot always tingles and has a buzzing/tight feeling.



Sorry for the delay. I hope any of these ramblings are interesting/ useful.
1081992 tn?1389903637
COMMUNITY LEADER
Leg nodes: are you walking around outdoors without shoes?
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No. But living in the country near swamps. Often get sand/dirt on my feet. No sidewalk or driveway. Just gravel and native soil which is dirt/sand.
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