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Just to vent .... and see if a biopsy is warranted

So I've had right side submandibular lymph node swelling for the past seven months now.  I've had a CBC, MRI, and CT Scan with contrast - all to tell me that I am "fine" and not to worry.  Unfortunately I feel and notice this thing every day, and every appointment has confirmed it is indeed a "palpable lymph node".  Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness, mild night sweats (not since MAR), finding more petechie on my body (not an alarming amount), 7-8% weight loss, jaw pain on the same side, and a feeling like other lymph nodes in the area are reactive as well.  Also, more recently I notice if I have a glass of wine or any alcohol the lymph node does not like it at all.  It doesn't burn or hurt per say but it certainly becomes uncomfortable. Recently the area has started to itch, and the lymph node feels tight (if that makes sense).  I do not feel a hard mass or immovable mass and whenever I do check it (and I do so very infrequently at this point) but touching it does make it feel more tender.  

At this point I am going back to my GP to request another CBC.  The report on the first was "normal" however there were some parts where I was on the way upper and lower ends of normal (Hb, Hct, Platelets, lymphocytes all low or way low end of normal).  I had a CBC back in 2019 which was truly normal, and in which I was almost perfectly down the middle of normal (except for very very low end of "normal" platelets).  So at this point I am wondering if I am out of bound on asking my GP for a referral for a fine needle biopsy?  Every appointment I'm only seen for about 5 -15 minutes then sent on my way, so it really feels like they don't care or don't have a clue.  If nothing else I am hoping at least for a referral to an ENT.  

This is completely depressing to deal with - which everyone here knows. But I am trying to remember the positive.  Plus there are positive indications as well - I am still very physically active (working out, riding, running 5 days a week), I feel generally okay/healthy, I sleep just find and most of the aforementioned symptoms have not returned lately.  I had a close friend go through this with the same results - being told everything is okay, he doesn't need a FNB only to have his FNB come back and say stage 1 cancer!  Thankfully he was treated and recovered. If he wouldn't have persisted he might have had a different out come.  I can't help but feel like I am in the same situation.
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1081992 tn?1389903637
COMMUNITY LEADER
I also see the opposite happening with Yellow Fever vaccine and herpes: causing outbreaks. So something is going on, probably "molecular mimicry" as a guess. That makes it very interesting, as opposed to exhibiting "no activity".
https://www.startpage.com/do/dsearch?query=Yellow+fever+vaccination++herpes++molecular+mimicry

"I take this to mean it has off-target effects"
Yes. THs are commanders, while CD8s frisk cells and kill them with a poisoned dagger if they think the cell contains virus. A "neutralizing antibody" can bind to a target like a virus and make it not work, just because the antibody is stuck on to it. E.g.: try shooting darts with screws embedded sideways in them.  

apoptosis = tell cell to kill itself in an orderly fashion

"I could spend all day reading articles on https://www.ncbi.nlm.nih.gov/"
That's the spirit.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"I just wonder because lymphadenopathy still trends toward cancer"
Nope.  

==========

In a study some time ago of people concerned enough about enlarged nodes to go see a doc, only 4% ended up Dxed with malignancy.

With your negative scans, that figure should drop to almost zero.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Height: you apparently aren't near to being anything like Marfan Syndrome. Nor acromegaly. Still, it might somehow correlate with something somewhere along the line.

Doxy: I found just a little as to the Method Of Action. "There are indications that the anti-inflammatory actions of doxycycline and minocycline in osteoarthritis are mediated via inhibition of nitric acid synthase."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4958212/
So you might see if you can identify and take a natural inhibitor of NO, just as a shot in the dark.

But now listen, same source: "Attempts have also been made to elucidate the mechanism by which doxycycline reduces pathology in lymphatic filariasis." That might be nothing but it does involve tropical parasites AND the lymphatic system. And granulomas:  https://www.cdc.gov/parasites/lymphaticfilariasis/health_professionals/index.html

"More recently it has showed promise against COVID-19..."
Yes, and was suppressed for political reasons, the same now with Ivermectin.

"I was given to think low C-Reactive Protein was actually sort of a good thing (low level of inflammation)."
Yes, a very good thing. hs-CRP became popularized ~2008 in the famous JUPITER trial as relates to heart disease. However, I'd say there is no such *single* thing as inflammation, so then low CRP or low hs-CRP doesn't mean there is no inflammation.

"Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)?"
I personally won't give any more thought to cancer in your case, unless new evidence arises.

"I just wonder because lymphadenopathy still trends toward cancer"
Nope.  
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
from your tests:
C-Reactive Protein <1         0-4          2

Was that CRP or hs-CRP? The latter is what we'd want.
Helpful - 0
2 Comments
The inconveniencies of being so tall, where to begin? Clothes, hugging someone, fitting into vehicles, getting pointed out by immature people, looking down to your boss (awkward), working on anything low to the ground, bending down to kitchen sinks and counters – generally living in a world designed for “normal size” people. Health-wise, standing up to fast and nearly blacking out (which thankfully I haven’t had in years unless dehydrated); having extra wear on the heart from pushing blood that little bit further.  You don’t see old tall people for two main reasons – 1) there haven’t traditionally been that many 2) Being tall comes at a cost (health-wise; organ wear and tear).

In regards to Doxy, it was generally a great experience taking it.  However, taking on an empty stomach gave me the worst heartburn in my life, and taking it on a full stomach made me very nauseas. It was prescribed for malaria prevention, and though it can make a person sensitive to sunlight I never experienced this. In fact, in re-reading the possible side-effects I can’t remember ever having any of them.  I took it a bit after eating in the middle of the day and was fine.  As far as Doxy itself, the literature is clear (and you’re spot on) – it does a lot to an “okay” or “good” degree (skin infections, dental, STIs, lyme disease, cholera, pneumonia, etc.) I would say.  Of course, there are numerous things that have developed resistance to it, and it is by no means a wonder drug.  More recently it has showed promise against COVID-19, and in clinical trials is being paired with other drugs to increase efficacy of either or both.

The CBC listed CRP not hs-CRP.  I was given to think low C-Reactive Protein was actually sort of a good thing (low level of inflammation).

Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)?  I just wonder because lymphadenopathy still trends toward cancer and granulomas can be alongside cancer.  If it is fibrosis in the lymph node than that could be indicative of HL or IgG4- related sclerosing disease.  As I sit back and review this a bit I try to summarize what am I dealing with: Seven months of a swollen lymph node, a "clear" US, a "clear" CT-Scan, mixed blood work, a 7% weight drop, more sore throats and mild illnesses in this time than in the past 2 years combined, yet still very physically active, feeling generally healthy.  It's quite confusing.  If it's not cancer than how do I get this thing back to normal?  Drainage, surgery, medication?

One thing I don’t get is that my GP listed the jugulodigastric node, which is deep, when in actuality I can feel the darn thing.  It seems to me to be either submandibular or something else.  It is below the jaw bone, and in front of the back corner of my jawbone. I would like to think this was done to ensure I got the CT Scan and wasn’t waved off, rather than just a mistake?  

By the way, I had the typhoid shot a few months before I got the yellow fever one, and I said to the nurse, “Oh I’m getting typhoid this time huh? Your name isn’t Mary is it?”, and she just looked at me confused.  Kids these days.  I thought it was a good “Dad joke”, but apparently it was lost on her.
Some of your feedback got me thinking so I did a little "research" aka Googling.  Here were some interesting finds....
“Yellow fever vaccination as prophylaxis of herpes labialis : At some vaccination centres, it seems to be a clinical observation, that there is a reduction in the number of attacks of herpes labialis following yellow fever vaccination. ….. In conclusion evaluation of the data from this study does not confirm the clinical observation that yellow fever vaccination may act as prophylaxis against herpes labialis.” Ok fine but I’ll take the anecdotal evidence from the clinics. Sure it’s not a cure, and who knows how long the effect will last, but if it’s because of the YF vaccine or a subsequent boost to my immune response and thus HSV-1 suppression, again I’ll take it.

"Early IFN-Gamma Production after YF 17D Vaccine Virus Immunization in Mice and Its Association with Adaptive Immune Responses - Yellow Fever vaccine is one of the most efficacious human vaccines ever made. The vaccine (YF 17D) virus induces polyvalent immune responses, with a mixed TH1/TH2 CD4(+) cell profile, which results in robust T CD8(+) responses and high titers of neutralizing antibody."  I take this to mean it has off-target effects, which again I will take and run with.  

Meanwhile down the Doxy rabbit hole....
“Mitochondria as target to inhibit proliferation and induce apoptosis of cancer cells: the effects of doxycycline and gemcitabine” - Doxycycline has anti-tumour effects in a range of tumour systems… Our results suggest that doxycycline suppresses cancer cell proliferation and primes cells for apoptosis by gemcitabine."

“Vitamin C and Doxycycline: A synthetic lethal combination therapy targeting metabolic flexibility in cancer stem cells (CSCs)” - In summary, we propose the combined use of i) Doxycycline (Hit-1: targeting mitochondria) and ii) Vitamin C (Hit-2: targeting glycolysis), which represents a new synthetic-lethal metabolic strategy for eradicating CSCs.

I could spend all day reading articles on https://www.ncbi.nlm.nih.gov/  . Anyway, I thought I would share these.
1081992 tn?1389903637
COMMUNITY LEADER
"Moving to the cold sores…I’m going to risk jinxing myself here and say that I haven’t had any since I got the yellow fever vaccine in early 2019.  I know it’s just a coincidence"
Probably not coincidence at all.

"stretchy skin"
Oh, I was thinking of a Connective Tissue Disorder, which can have a dizzying array of symptoms.

"As a kid I grew up flipping through my mom’s nursing books, so I figure at least I’m not starting from scratch with all of this.?"
Yes, you have advantages over the average patient.

"combating general inflammation"
Yes, that's a worthy and necessary goal.

"I have wanted to up the zinc, but every thing I read talks about the dangers of over doing it."
It's maybe possible to overdo it, that's why I'd said "...for a month" as a trial. (The Polident zinc-copper lawsuits were inconclusive, as I recall.) I personally have taken that much. You can find warnings about anything and everything online. It's important to know what's credible as opposed to what is just talked about at the health food store.

"I really am 6’7”….and it’s mostly terrible."
How is it terrible? Healthwise, or just for buying clothes, etc?

"Again, since the 2019 yellow fever shot I’ve only gotten truly sick (stay at home in bed style) twice."
Likely because it changed your immune system generally. Btw, as something of a parallel: there are a few credible stories of spontaneous cures of cancer, most or all involve the person getting some infection which changed their immune system generally.  

"(I was 210ish then and lifting all the time, eating a 3000-4000 calorie diet (not a very healthy one) just to stay that weight)."
That shows true dedication and discipline, which ability will be very useful now.

"I was prescribed doxy 100mg per day as a preventative.  It made my hair and skin look great and I never got even a sniffle when I took it.  The more I read about it the more I am impressed by it!"
Interesting. Please elaborate some more on that. Doxycyclne has anti-inflammatory and antiviral properties, not only anti-bacterial - as you likely know.

"You’ve given me more feedback and more to think about in these past few days than any doctor I’ve seen to date."
And we're just beginning :)
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Why taking Bromelain and Quercetin?

A small matter: I'd triple the zinc for a month to see if the nail ridges lessen.

You are 6' 7"? That might also correlate with something.

You've traveled a lot. No exotic infections? Anything besides the HSV? Frequent colds or very infrequent colds? Severe allergies or sensitivities?
Helpful - 0
2 Comments
Very flexible or infexible joints? Stretchy skin?
Once again thank you Ken!  So with the toe fungus that’s an odd one when I stop and think about it.  It’s only 1/10 of one toe on one foot.  It never goes away, but it never spreads, gets worse, or causes any issues.  I obviously just haven’t been good about treating it, and thanks to this I am going to try a month of nightly tea tree oil treatment (like nail polish) and see what that does.

Moving to the cold sores…I’m going to risk jinxing myself here and say that I haven’t had any since I got the yellow fever vaccine in early 2019.  I know it’s just a coincidence, but I’ll take it.  Cold sores were pretty chronic for me from 2012 through 2017.  Then in 2018 they really tapered off, and now I’m eating nuts, chocolate, and other triggers without any issues.  It’s quite the turn around really, and I still think about it all the time (baffled really).  In this age of mask wearing now would be the time to get them again, haha!  Even when I have gotten sick and my immune system was down they haven’t come back.

I didn’t really pay attention to the geographic tongue after 2016, but I did take note of it again back in February. Now that I’ve been looking for it again I do notice it has come and gone over the past five months.

I have to admit, I had to laugh for a second when I read the stretchy skin question.  I know it is an indication of some medical issues/conditions/symptoms, but no I think my skin is pretty normal as far a stretchiness goes. My skin pigment returns per normal too when pressed-released. I do appreciate though, that our eyes, hair, nails, skin, inside of our mouth/dental are all great windows and indications as to what’s going on underneath/inside.  As a kid I grew up flipping through my mom’s nursing books, so I figure at least I’m not starting from scratch with all of this.?

My vitamin regimen is geared towards combating general inflammation in the body, which as I understand it is not good.  It’s also geared towards generally supporting a healthy immune system. I have wanted to up the zinc, but every thing I read talks about the dangers of over doing it.  I know this is more out of liability and caution than anything. However, I have decided I’ll do it gradually (30, 60, 90mg per day over three weeks) and see what happens.  

I really am 6’7”….and it’s mostly terrible.

Again, since the 2019 yellow fever shot I’ve only gotten truly sick (stay at home in bed style) twice. I have had the odd sniffle here and there, but in hindsight until this lymph node swelling started in Dec 2020 I had a pretty good streak going for almost two years.  I don’t have any allergies I am aware of. My joints are actually better now than they were a year ago (I was 210ish then and lifting all the time, eating a 3000-4000 calorie diet (not a very healthy one) just to stay that weight). My right knee used to click (not painfully though) when going up a flight of stairs, and now that is gone. The second dose of the Moderna vaccine did put me down hard, but only for exactly 24 hours, then I felt great.

I have traveled a lot and I can’t think of having gotten any infections during those times, in fact those times were when I was probably most healthy.  I was prescribed doxy 100mg per day as a preventative.  It made my hair and skin look great and I never got even a sniffle when I took it.  The more I read about it the more I am impressed by it!

As always, I sincerely appreciate your time.  You’ve given me more feedback and more to think about in these past few days than any doctor I’ve seen to date.  I even showed up at my second appointment with notes in hand and a one-page medical summary – and got no response.  So again thank you!
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