Aa
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.
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.
COMMUNITY LEADER
"I was given Prednisolone"
Brilliant! I suggest that myself in mystery immune conditions, but few docs ever do it. She's a rare one. It's a trial, not suitable for long term management except when completely necessary, as there are too many sides. But the trial can give useful clues, as yours did.
"blood was drawn"
It's important to state which particular tests, then I can know what they're thinking. Probably CRP and ESR are included.
"Prednisolone today and my swallowing seems slightly better"
Yep, as anti-inflammatory - which includes being anti edema in your case.
"It was a real issue"
Emphasize that to the ENT so they will take you more seriously.
"Maybe just a placebo effect"
nope
"lightheadedness is still present but only when I stand up quick"
POTS and the underlying orthostatic hypotension are a common feature in mystery immune conditions. People can actually pass out during a tilt table test. [You can see I'm throwing in terms which you can look up as you educate yourself into becoming a pretty fair expert in what you have :) ]
"When I was heavier (195lb and above) it actually went away completely for a few years"
If you can discover/infer the mechanism for that, you can possibly reproduce the benefit.
"when not properly hydrated"
reduced circulatory volume, i.e. less blood = lower BP
"vaso-modulating spikes"
Your trial drug is a mineralocorticoid, so you will retain salt and probably thereby increase circulatory volume. I'd try increasing sodium intake as well to see if altogether that helps. A different mineralocorticoid steroid is commonly given for POTS, btw.
"4 night sweats. Two were drenching and 2 were just uncomfortable. When I mentioned that to my GP her eyebrows went up"
Me, too. Very much so. Not that it's a danger, but that it's a marked progression and is also a clue. It's an inflammatory thing - not a cancer in you. Try to think if you did anything different before that appeared. Or did you catch a cold, e.g.?
Take your temp when it happens to see if it is a real temp change, or just a perception.
If the ENT turns out to be just a plodder, then your insightful GP will be your greatest asset. She seems to be tops.
I'm glad to be of help. Let me know anything new, cris.
Brilliant! I suggest that myself in mystery immune conditions, but few docs ever do it. She's a rare one. It's a trial, not suitable for long term management except when completely necessary, as there are too many sides. But the trial can give useful clues, as yours did.
"blood was drawn"
It's important to state which particular tests, then I can know what they're thinking. Probably CRP and ESR are included.
"Prednisolone today and my swallowing seems slightly better"
Yep, as anti-inflammatory - which includes being anti edema in your case.
"It was a real issue"
Emphasize that to the ENT so they will take you more seriously.
"Maybe just a placebo effect"
nope
"lightheadedness is still present but only when I stand up quick"
POTS and the underlying orthostatic hypotension are a common feature in mystery immune conditions. People can actually pass out during a tilt table test. [You can see I'm throwing in terms which you can look up as you educate yourself into becoming a pretty fair expert in what you have :) ]
"When I was heavier (195lb and above) it actually went away completely for a few years"
If you can discover/infer the mechanism for that, you can possibly reproduce the benefit.
"when not properly hydrated"
reduced circulatory volume, i.e. less blood = lower BP
"vaso-modulating spikes"
Your trial drug is a mineralocorticoid, so you will retain salt and probably thereby increase circulatory volume. I'd try increasing sodium intake as well to see if altogether that helps. A different mineralocorticoid steroid is commonly given for POTS, btw.
"4 night sweats. Two were drenching and 2 were just uncomfortable. When I mentioned that to my GP her eyebrows went up"
Me, too. Very much so. Not that it's a danger, but that it's a marked progression and is also a clue. It's an inflammatory thing - not a cancer in you. Try to think if you did anything different before that appeared. Or did you catch a cold, e.g.?
Take your temp when it happens to see if it is a real temp change, or just a perception.
If the ENT turns out to be just a plodder, then your insightful GP will be your greatest asset. She seems to be tops.
I'm glad to be of help. Let me know anything new, cris.
1 Comments
So I am still waiting on a date for an appointment with the ENT. The specialist (Doc) definitely wants to do an endoscopy but due to COVID it has to be approved by the greater hospital. This is encouraging but also very frustrating and it could be weeks. Meanwhile, the Prednisolone is not having quite the effect it had the first two days, and yet I am dreading not having it starting Sunday. While my swallowing is generally improved it is still a bit labored (throat feeling dry too). Strangely enough eating and drinking cause almost on issues. However, speaking is becoming a bit more laborious and I noticed today when I was reading aloud (proofing an memo) I couldn't make it two pages without my voice tapering off, being severely strained, and just generally very uncomfortable. How silly would it be if this was just something simple like Laryngitis, haha. Alas, all my digging leads me contrary to your 'inflammation and not cancer statement', but I am trying to stay positive. I'm not sure what blood tests my GP is running, I know one is a CBC, not sure what the other two samples were for.
COMMUNITY LEADER
Hi, cris. I do remember you. You are very methodical and self-observant, which is very good.
"I'm trying not to be one of those people."
I appreciate that, thanks.
"I still have chronic lymphadenopathy on my right jugulodigastric lymph node..."
Ongoing reactive/inflammation. Something is causing release of inflammatory biochemicals, which in turn are causing all your regional symptoms. You also possibly have some fibrosis and/or granulomas in the node.
"lethargy, low energy"
The systemic symptom of fatigue/malaise, as in Chronic Fatigue Syndrome aka ME, fibromyalgia and other mystery illnesses. I'm not saying you have CFS/ME, I'm saying that inflammation like that is present in several conditions which are not well understood. Btw, there has been huge controversy in Britain over CFS/ME. It's also more prevalent there. Also btw and as a parallel example, people who take the drug interferon have the lethargy, it's a synthetic version of the natural immune system biochemical. The tiredeness from flu is from immune system biochemicals.
"lightheadess at some points of the day (diminishing)"
Probably from low blood pressure, brought on by vasodilating inflammatory biochemicals. Take note if it especially happens upon standing; stand then observe your pulse rate, e.g. (reflex tachycardia occurs because of low BP).
"Off to my GP tomorrow"
Who hopefully is not clueless :)
"who I hope in-turn does either a laryngoscopy or endoscopy of some kind."
I'd ask for CRP and SED-rate blood tests, for starters.
"An MRI or PET Scan would be nice for the lymph node"
PET they would never do for this, it's whole body and it's also not helpful for this situation anyway. To scan the specific node, they won't use expensive MRI. If the node is near the surface enough, then the most used and most useful is ultrasound. If deeper, then it's the stodgy CT - but if they don't use contrast, then the CT will only see the size/shape which is not all that useful. Though contrast has a (small) risk attached, that's still what you want in order to see the "internal architecture" of the node and especially wanting to see the presence of the "fatty hilum". You should want the ultrasound because that gives better info regarding demonstrating that it's not-cancer.
Overall, the enlarged node is just part of the overall inflammatory clinical picture. Too many docs will just want to rule out cancer, then they'll not investigate any further for the true cause. Expect that, and try to present a case that you want more.
Good luck, cris.
"I'm trying not to be one of those people."
I appreciate that, thanks.
"I still have chronic lymphadenopathy on my right jugulodigastric lymph node..."
Ongoing reactive/inflammation. Something is causing release of inflammatory biochemicals, which in turn are causing all your regional symptoms. You also possibly have some fibrosis and/or granulomas in the node.
"lethargy, low energy"
The systemic symptom of fatigue/malaise, as in Chronic Fatigue Syndrome aka ME, fibromyalgia and other mystery illnesses. I'm not saying you have CFS/ME, I'm saying that inflammation like that is present in several conditions which are not well understood. Btw, there has been huge controversy in Britain over CFS/ME. It's also more prevalent there. Also btw and as a parallel example, people who take the drug interferon have the lethargy, it's a synthetic version of the natural immune system biochemical. The tiredeness from flu is from immune system biochemicals.
"lightheadess at some points of the day (diminishing)"
Probably from low blood pressure, brought on by vasodilating inflammatory biochemicals. Take note if it especially happens upon standing; stand then observe your pulse rate, e.g. (reflex tachycardia occurs because of low BP).
"Off to my GP tomorrow"
Who hopefully is not clueless :)
"who I hope in-turn does either a laryngoscopy or endoscopy of some kind."
I'd ask for CRP and SED-rate blood tests, for starters.
"An MRI or PET Scan would be nice for the lymph node"
PET they would never do for this, it's whole body and it's also not helpful for this situation anyway. To scan the specific node, they won't use expensive MRI. If the node is near the surface enough, then the most used and most useful is ultrasound. If deeper, then it's the stodgy CT - but if they don't use contrast, then the CT will only see the size/shape which is not all that useful. Though contrast has a (small) risk attached, that's still what you want in order to see the "internal architecture" of the node and especially wanting to see the presence of the "fatty hilum". You should want the ultrasound because that gives better info regarding demonstrating that it's not-cancer.
Overall, the enlarged node is just part of the overall inflammatory clinical picture. Too many docs will just want to rule out cancer, then they'll not investigate any further for the true cause. Expect that, and try to present a case that you want more.
Good luck, cris.
1 Comments
Ken, hello again, and as always I appreciate you sincere and thought provoking feedback. The GP visit went well and I believe my concerns were well received. I was given Prednisolone to take for the next 5 days (30mg), blood was drawn and another work up will be done, and I received a referral to an ENT (no date for appointment yet). Best guess between the Doc and I is that I won't be seen until late next week (21st-ish). So maybe it's just in my head but I took the 30mg of Prednisolone today and my swallowing seems slightly better. It was a real issue yesterday and especially today before the appointment....3 hours after taking it the severity has calmed down a lot. Maybe just a placebo effect, I had zero expectation it would have any effect today or at all, but I'll take it.
The lightheadedness is still present but only when I stand up quick after sitting a while. I've sort of had that on and off my whole life though so I'm pretty used to it. When I was heavier (195lb and above) it actually went away completely for a few years, which was nice. Being tall (6'7") and thin (181lbs right now) I sort of expect to have this, especially when not properly hydrated.
I've noticed cutting out coffee and alcohol really helps keep the lymph node from flaring up - it doesn't like those vaso-modulating spikes, haha. I'm not to sad to give them up when the result is feeling better overall.
I forgot to mention earlier, since everything went crazy about the 28th, in the past 2 weeks I've had 4 night sweats. Two were drenching and 2 were just uncomfortable. When I mentioned that to my GP her eyebrows went up and that's when she said she was going to do more blood work. I feel like I can't regulate my body temp throughout the night now....I'm either avoiding night sweats and chilly/cold, or I cover up and start off fine only to wake up hours later having to change my shirt. It is so frustrating and ends any chance of a good whole night of sleep.
Well more to follow (hopefully). I will mention an ultrasound to the hospital/ENT when I go but I'm certain I'll have to get another/separate referral for that. Thanks again for your time and feedback. Cheers!
The lightheadedness is still present but only when I stand up quick after sitting a while. I've sort of had that on and off my whole life though so I'm pretty used to it. When I was heavier (195lb and above) it actually went away completely for a few years, which was nice. Being tall (6'7") and thin (181lbs right now) I sort of expect to have this, especially when not properly hydrated.
I've noticed cutting out coffee and alcohol really helps keep the lymph node from flaring up - it doesn't like those vaso-modulating spikes, haha. I'm not to sad to give them up when the result is feeling better overall.
I forgot to mention earlier, since everything went crazy about the 28th, in the past 2 weeks I've had 4 night sweats. Two were drenching and 2 were just uncomfortable. When I mentioned that to my GP her eyebrows went up and that's when she said she was going to do more blood work. I feel like I can't regulate my body temp throughout the night now....I'm either avoiding night sweats and chilly/cold, or I cover up and start off fine only to wake up hours later having to change my shirt. It is so frustrating and ends any chance of a good whole night of sleep.
Well more to follow (hopefully). I will mention an ultrasound to the hospital/ENT when I go but I'm certain I'll have to get another/separate referral for that. Thanks again for your time and feedback. Cheers!
COMMUNITY LEADER
cris, if you think you have a cancer in the node and also in a neck mass, then you'd want a CT, not ultrasound. The US is good for a node near the surface, does not see so well the deeper it goes.
https://www.sciencedirect.com/science/article/abs/pii/S0001299820300763
"Imaging of Head and Neck Cancer With CT, MRI, and US" 2021
https://www.sciencedirect.com/science/article/abs/pii/S0001299820300763
"Imaging of Head and Neck Cancer With CT, MRI, and US" 2021
COMMUNITY LEADER
"Alas, all my digging leads me contrary to your 'inflammation and not cancer statement', but I am trying to stay positive."
Well, you can post what you think tends toward cancer, and I will respond to that. :)
Well, you can post what you think tends toward cancer, and I will respond to that. :)
COMMUNITY LEADER
"right side jaw pain"
Likely inflammatory chemicals leaked to there, including such as bradykinin and Substance-P, which cause pain.
"even more palpable"
It could have expanded, or have swelling/edema around it.
"I need to go back over all my notes, bloodwork, and suggestions you have offered again."
Wow, that's terrific :) It's really up to you now to self-observe and learn and experiment. That's your best hope, there is very likely no magic consultant that will set things right.
"My doc isn't likely to see me anymore in regards to this, pending a drastic change, so that avenue of input seems lost."
True on all 3 points.
"It just worries me that something my be manifesting silently,"
True, it is. But no reason to think it is lethal or even near that. It might be mainly a nuisance.
"that I could stop it early,"
Maybe. You said you were trying to live anti-inflammatory. I think that is very much the thing to do, but it is exceedingly complex. Inflammation is not like a single stream, it's more like the Mississippi River delta. Imagine that seen from overhead, various interacting pathways.
"and instead the problem is just going to get worse"
Usually, but not necessarily. There can even rarely be spontaneous remission.
Likely inflammatory chemicals leaked to there, including such as bradykinin and Substance-P, which cause pain.
"even more palpable"
It could have expanded, or have swelling/edema around it.
"I need to go back over all my notes, bloodwork, and suggestions you have offered again."
Wow, that's terrific :) It's really up to you now to self-observe and learn and experiment. That's your best hope, there is very likely no magic consultant that will set things right.
"My doc isn't likely to see me anymore in regards to this, pending a drastic change, so that avenue of input seems lost."
True on all 3 points.
"It just worries me that something my be manifesting silently,"
True, it is. But no reason to think it is lethal or even near that. It might be mainly a nuisance.
"that I could stop it early,"
Maybe. You said you were trying to live anti-inflammatory. I think that is very much the thing to do, but it is exceedingly complex. Inflammation is not like a single stream, it's more like the Mississippi River delta. Imagine that seen from overhead, various interacting pathways.
"and instead the problem is just going to get worse"
Usually, but not necessarily. There can even rarely be spontaneous remission.
1 Comments
Still here: A lot of folks post, chat, get an answer or some direction and disappear and never offer any updates or feedback - I'm trying not to be one of those people. So just a quick update then:
I still have chronic lymphadenopathy on my right jugulodigastric lymph node but since July it hasn't really caused any serious issues. It's still highly noticeable (to me at least), or palpable as my Doc would say. Unfortunately these past two weeks, since about 28DEC21 it has been acting up or perhaps causing some issues (or maybe not). My symptoms have included:
- dysphagia (trouble swallowing) which is notable to the right side of my neck, but two fingers down from the suspect lymph node (most prominent symptom)
- trouble speaking without hoarseness, trouble starting, trouble keeping the same pitch (if that makes sense);
- right side ear ringing (I have tinnitus but this is much more persistent)
- dull neck pain (right side), mostly along interior of sternocleidomastoid
- dull ache in the posterior part of my right jaw
- Palatoglossal arch redness (velvet color)
- Posterior wall of oropharynx has apparent red nodules
- lethargy, low energy
- lightheadess at some points of the day (diminishing)
- enlarged oropharynx posterior wall vein (dark in color and clearly dilated)
Off to my GP tomorrow to hopefully get a referral to an ENT - who I hope in-turn does either a laryngoscopy or endoscopy of some kind. An MRI or PET Scan would be nice for the lymph node (as a check-up) as well, but one step at a time. Wish me luck.
I still have chronic lymphadenopathy on my right jugulodigastric lymph node but since July it hasn't really caused any serious issues. It's still highly noticeable (to me at least), or palpable as my Doc would say. Unfortunately these past two weeks, since about 28DEC21 it has been acting up or perhaps causing some issues (or maybe not). My symptoms have included:
- dysphagia (trouble swallowing) which is notable to the right side of my neck, but two fingers down from the suspect lymph node (most prominent symptom)
- trouble speaking without hoarseness, trouble starting, trouble keeping the same pitch (if that makes sense);
- right side ear ringing (I have tinnitus but this is much more persistent)
- dull neck pain (right side), mostly along interior of sternocleidomastoid
- dull ache in the posterior part of my right jaw
- Palatoglossal arch redness (velvet color)
- Posterior wall of oropharynx has apparent red nodules
- lethargy, low energy
- lightheadess at some points of the day (diminishing)
- enlarged oropharynx posterior wall vein (dark in color and clearly dilated)
Off to my GP tomorrow to hopefully get a referral to an ENT - who I hope in-turn does either a laryngoscopy or endoscopy of some kind. An MRI or PET Scan would be nice for the lymph node (as a check-up) as well, but one step at a time. Wish me luck.
COMMUNITY LEADER
"The truly disturbing thing was it happening a few time from '15-17 when I was doing almost only weight training."
You might have paroxysmal superventricular tachycardia. The EKG report might say that. Maybe you were over stressed during that period.
You might have paroxysmal superventricular tachycardia. The EKG report might say that. Maybe you were over stressed during that period.
1 Comments
exercise induced paroxysmal supraventricular tachycardia (SVT), which is a known thing
COMMUNITY LEADER
"As for the heart issue: It started in 2008"
Okay, then we can discard SCD. Probably. But check if any future episode has irregular beating. Keep in mind that the heart episodes are an oddity that might be related to everything else. This is called Occam's Razor.
You might know that the max heart rate that you can achieve declines with age, and is generally 220 - age. It's a casual, back of an envelope kind of thing.
"Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot... just muscle or tendon"
Muscle wouldn't be *very* hard. But if the bump isn't more or less rock hard, then it's not calcification.
So then, Cris, if you accept that you shouldn't worry about lymphoma, what would be your chief complaint at this point?
Okay, then we can discard SCD. Probably. But check if any future episode has irregular beating. Keep in mind that the heart episodes are an oddity that might be related to everything else. This is called Occam's Razor.
You might know that the max heart rate that you can achieve declines with age, and is generally 220 - age. It's a casual, back of an envelope kind of thing.
"Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot... just muscle or tendon"
Muscle wouldn't be *very* hard. But if the bump isn't more or less rock hard, then it's not calcification.
So then, Cris, if you accept that you shouldn't worry about lymphoma, what would be your chief complaint at this point?
1 Comments
Ken, that is a great question and something I have been struggling with since I got the latest bloodwork back. I am at a loss. I had right side jaw pain for about a week - up until yesterday actually. The node (submandibular I believe) is still swollen, it seems even more palpable, and I even notice it in the mirror now. I get some discomfort below the node down my deck to my collar bone - but this isn't constant. I am at a loss. There is obviously something going on. I need to go back over all my notes, bloodwork, and suggestions you have offered again. My doc isn't likely to see me anymore in regards to this, pending a drastic change, so that avenue of input seems lost.
I suppose all I can do is monitor my health and if something drastic changes go back to my GP. It just worries me that something my be manifesting silently, that I could stop it early, and instead the problem is just going to get worse. I've made diet changes, continue to exercise, and am trying to reduce stress. For now I am still at a loss...
I suppose all I can do is monitor my health and if something drastic changes go back to my GP. It just worries me that something my be manifesting silently, that I could stop it early, and instead the problem is just going to get worse. I've made diet changes, continue to exercise, and am trying to reduce stress. For now I am still at a loss...
COMMUNITY LEADER
Inflammation of the heart muscle can affect electric conduction and make the heart not pump efficiently. Heart block. Nothing to do with atherosclerosis, aka blocked arteries.
2 Comments
Thanks for the feedback Ken. As for the heart issue: It started in 2008 during a 10 mile race. I got to mile 9 and my heart suddenly went crazy, to the point I had to stop and walk for almost the last mile. It recurs every now and then when I am pushing myself and not focusing on my breathing. From 2015-2017 I could always feel it coming on and sure enough I would look at my HRM and see myself spike into the 180s or even 190s briefly. I'd have to walk a bit and then slowly start running again. From 2018 on it does it at a much lower range 150s/160s, which is even more depressing. In early 2018 I had a test done where they hooked me up to a bunch of heart monitors and sensors and put me on a treadmill and tried to induce it (recreate it). In the end they said the test was inconclusive but they did admit something was amiss. I think I still have the whole EKG print off somewhere. The truly disturbing thing was it happening a few time from '15-17 when I was doing almost only weight training. Thankfully it has happened since.
I had a nurse friend of mine feel around my neck on the "node" behind my jaw (below my ear lobe), and they thought it was just muscle or tendon and not a node or swelling. I will chalk that one up to paranoia for now, but keep an eye on it.
I had a nurse friend of mine feel around my neck on the "node" behind my jaw (below my ear lobe), and they thought it was just muscle or tendon and not a node or swelling. I will chalk that one up to paranoia for now, but keep an eye on it.
Edit: hasn't happened during weightlifting since 2018. It does occur out of the blue on some hard runs, but not every hard run.
COMMUNITY LEADER
Well, we can rule out a genetic excess-iron problem, so that's some progress. The hard spot is probably a calcified node or a calcified nodule. Because of your history, I don't think that's a big deal - it's likely just the immune system going overboard in a new place.
Yes, mechanical stress can aggravate inflammation. Pollen can, too. Or a common cold virus. But I'd say the throat infection is driving all downstream inflammation, and other factors only aggravate that.
Circadian rhythms can cause feeling worse at night, with a spike in immune system activity.
'Had a nice little "heart fit" as I like to call it, on my run today.'
Okay, that's the thing I'd concentrate on for now. Make sure the beat is not irregular during fits, or anytime. Maybe your monitor does that, or else feel your pulse to make sure the beat is steady with no missing beats. Let me know about that when you check it. We want to be sure there is no viral myocarditis. Not to be alarmist, but to be prudent: the worst case is sudden cardiac death (SCD), which is what healthy athletes die of during exertion (2nd only to a genetic malformation of the heart, HOCUM). E.g., in many places even teenagers can't resume a school sport after a bad cold without an EKG first. Important: did you ever have that *before* the throat infection?
There is a guy who's been here off and on over a period of time, named Spartan. You can check out his recent post if you like, he's got similarities with you - but not the heart.
Yes, mechanical stress can aggravate inflammation. Pollen can, too. Or a common cold virus. But I'd say the throat infection is driving all downstream inflammation, and other factors only aggravate that.
Circadian rhythms can cause feeling worse at night, with a spike in immune system activity.
'Had a nice little "heart fit" as I like to call it, on my run today.'
Okay, that's the thing I'd concentrate on for now. Make sure the beat is not irregular during fits, or anytime. Maybe your monitor does that, or else feel your pulse to make sure the beat is steady with no missing beats. Let me know about that when you check it. We want to be sure there is no viral myocarditis. Not to be alarmist, but to be prudent: the worst case is sudden cardiac death (SCD), which is what healthy athletes die of during exertion (2nd only to a genetic malformation of the heart, HOCUM). E.g., in many places even teenagers can't resume a school sport after a bad cold without an EKG first. Important: did you ever have that *before* the throat infection?
There is a guy who's been here off and on over a period of time, named Spartan. You can check out his recent post if you like, he's got similarities with you - but not the heart.
COMMUNITY LEADER
"So now it's wait and see on what comes back with the blood work"
Okay, let me know.
Btw, many people with immune dysfunction eventually get (wrongly) told that it's all in their heads. They might get prescribed tranquilizers or anti-depressants.
Okay, let me know.
Btw, many people with immune dysfunction eventually get (wrongly) told that it's all in their heads. They might get prescribed tranquilizers or anti-depressants.
1 Comments
Well as the Doc expected, everything came back "normal". I updated my journal with the results and posted some screen captures (photos) for easy reference. One thing I noticed right off, Hb went down, WBC went down, Neutrophils went down. My Platelets went up slightly (although still at the bottom of "normal"), and there were minor improvements (I thought) on the Biochemistry Report. I came back "normal" on the Serum Ferritin test, but I am way at the bottom of "normal".
Meanwhile symptoms have only worsened, the node in question remains pronounced and quite palpable. There is tightness in my jaw on the same side as the swollen lymph node, there is a fullness/tightness/discomfort that radiates up from the submandibular to behind my jaw bone and down along my sterno (SCM). I do catch myself tilting my head oddly or my positioning my jaw oddly throughout the day (or creating a suction/tightness in my mouth, if that makes sense), and the jaw tenderness increases the more I rest my head on my hand. Additionally, every morning I wake up with a sore dry throat and hacking up phlegm, and every night around 8PM my sore throat starts. I'm not sure if this is just a nasal drip due to pollen/weather/etc., but the severity comes and goes. During the day I generally feel great. --- So more self-check-ins on posture and relaxing muscles, and more water consumption to see if things get better.
Most disturbing of all, on the day I went for the appointment I had some tenderness behind my right jaw bone and was feeling around. Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot. It is not symmetrical at all with the left side, the right protrudes more. I'm not sure if this is a node, and misaligned disc, a knot in a muscle or what, but it feels pronounced. It doesn't really cause discomfort, but is disturbing none-the-less.
I should be relived with the blood work, but since I still have issues yet no answers I'm just more frustrated. My weight continues to drop slightly (down to 184) and I have noticed I am getting lightheaded more easily. Had a nice little "heart fit" as I like to call it, on my run today. My chest band HRM said I was only at 157 but I had to slow way down for 30 seconds, reset, then slowly get back up to speed. I still finished 4 miles in 32min, so it wasn't a total loss. That's more likely me just getting older and more out of shape, but still trying to go like I used to, haha.
Eager to hear any thoughts on all of this.
Meanwhile symptoms have only worsened, the node in question remains pronounced and quite palpable. There is tightness in my jaw on the same side as the swollen lymph node, there is a fullness/tightness/discomfort that radiates up from the submandibular to behind my jaw bone and down along my sterno (SCM). I do catch myself tilting my head oddly or my positioning my jaw oddly throughout the day (or creating a suction/tightness in my mouth, if that makes sense), and the jaw tenderness increases the more I rest my head on my hand. Additionally, every morning I wake up with a sore dry throat and hacking up phlegm, and every night around 8PM my sore throat starts. I'm not sure if this is just a nasal drip due to pollen/weather/etc., but the severity comes and goes. During the day I generally feel great. --- So more self-check-ins on posture and relaxing muscles, and more water consumption to see if things get better.
Most disturbing of all, on the day I went for the appointment I had some tenderness behind my right jaw bone and was feeling around. Behind the jaw bone one finger width up (but below the ear lobe) I noticed a very hard knot. It is not symmetrical at all with the left side, the right protrudes more. I'm not sure if this is a node, and misaligned disc, a knot in a muscle or what, but it feels pronounced. It doesn't really cause discomfort, but is disturbing none-the-less.
I should be relived with the blood work, but since I still have issues yet no answers I'm just more frustrated. My weight continues to drop slightly (down to 184) and I have noticed I am getting lightheaded more easily. Had a nice little "heart fit" as I like to call it, on my run today. My chest band HRM said I was only at 157 but I had to slow way down for 30 seconds, reset, then slowly get back up to speed. I still finished 4 miles in 32min, so it wasn't a total loss. That's more likely me just getting older and more out of shape, but still trying to go like I used to, haha.
Eager to hear any thoughts on all of this.
COMMUNITY LEADER
"There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac."
Yep, that is correct. Good luck.
Yep, that is correct. Good luck.
1 Comments
Well the appointment was a mixed bag. Good news: the doc agreed to another CBC and a Ferritin test. She was also open to the idea of a DNA test, pending the results of the other two. Bad news: she basically accused me of being irrational and having "medical anxiety", that we are probably at the end of examining the issue, and that I may just have to accept that this is the way it is and is never going to change. I can handle the last part - fine, so be it. But in order to reach that conclusion I believe we need to exhaust a little more testing and examinations. "Sorry I'm not an easy patient with obvious symptoms and clearly indicative results - medicine/medical practice is hard, so rise to the challenge Doc! Sorry I've had a relatively healthy life for 30+ years and now this has hit and is so disconcerting to me." - which is what I wanted to say, but kindly bit my lip. I could go on but it's best to let a day or two go by to let the nerves cool. It certainly wasn't what I would call a productive session.
Referencing back to the CT Scan - it was not the radiologist who make the mix-up (jugulodigastric vs submandibular) it was my GP! That's what she put on the referral to the the hospital for the scan. I'd like to think this was to ensure the CT Scan was approved rather than some mistake in identifying anatomy, however we're all human and I am grateful to have had the procedure.
So now it's wait and see on what comes back with the blood work. It seems a bit of a lose-lose situation though. Positive blood work results are just going to leave me confused, and still with no answers as to what's going on. Bad results .... well no one wants those.
Referencing back to the CT Scan - it was not the radiologist who make the mix-up (jugulodigastric vs submandibular) it was my GP! That's what she put on the referral to the the hospital for the scan. I'd like to think this was to ensure the CT Scan was approved rather than some mistake in identifying anatomy, however we're all human and I am grateful to have had the procedure.
So now it's wait and see on what comes back with the blood work. It seems a bit of a lose-lose situation though. Positive blood work results are just going to leave me confused, and still with no answers as to what's going on. Bad results .... well no one wants those.
COMMUNITY LEADER
"Just so I am straight here, are you leaning more towards hemochromatosis and less towards cancer (lymphoma, leukemia, or otherwise)? "
Nope, I think your immune system is doing the node.
"If it's not cancer than how do I get this thing back to normal?"
Ending any ongoing internal inflammation for starters. And hoping for some regression. Macrophages taking tiny tiny bites for years maybe.
"Drainage"
Nope, your scan would probably have seen cystic (fluid) areas, but saw none and that would have been alarming besides.
"surgery"
Yes, excision. But they won't do that probably, because it's benign. Even if you would pay privately, a surgeon might say it's not worth the surgical risk.
"medication?"
There are some for (deadly) pulmonary fibrosis, but maybe they don't apply and probably you would never get them. If you run across anything OTC being discussed, let me know.
Yes, I did notice that the "deep" sub-muscle node is palpable by you, but didn't address that with so much else going on. A sober radiologist would not make such a gross mistake, so I don't know the answer. It was also not very large for its type anyway.
Nope, I think your immune system is doing the node.
"If it's not cancer than how do I get this thing back to normal?"
Ending any ongoing internal inflammation for starters. And hoping for some regression. Macrophages taking tiny tiny bites for years maybe.
"Drainage"
Nope, your scan would probably have seen cystic (fluid) areas, but saw none and that would have been alarming besides.
"surgery"
Yes, excision. But they won't do that probably, because it's benign. Even if you would pay privately, a surgeon might say it's not worth the surgical risk.
"medication?"
There are some for (deadly) pulmonary fibrosis, but maybe they don't apply and probably you would never get them. If you run across anything OTC being discussed, let me know.
Yes, I did notice that the "deep" sub-muscle node is palpable by you, but didn't address that with so much else going on. A sober radiologist would not make such a gross mistake, so I don't know the answer. It was also not very large for its type anyway.
1 Comments
I am truly moved by your depth of response. You've taken your valuable time to lend a hand to a complete stranger. Thank you!
I have an appointment for next week. So now it's time to review all this and do some homework and prepare. There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac. I know I need to whitle this all down to succinct points, correlate it, and be prepared to answer questions that might arise on my end.
I did request another CBC and if that gets turned down I know of private clinics you can have it done. If nothing else more data is needed in order to get better analysis.
Thank you again.
I have an appointment for next week. So now it's time to review all this and do some homework and prepare. There's a fine line when addressing a doctor, between coming off to brash or as ignorant, information overload/dumping or as a hypochondriac. I know I need to whitle this all down to succinct points, correlate it, and be prepared to answer questions that might arise on my end.
I did request another CBC and if that gets turned down I know of private clinics you can have it done. If nothing else more data is needed in order to get better analysis.
Thank you again.
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.
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.
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.
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.
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.
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.
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.
C-Reactive Protein <1 0-4 2
Was that CRP or hs-CRP? The latter is what we'd want.
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.
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.
“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.
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 :)
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 :)
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?
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?
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!
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!
COMMUNITY LEADER
Well, Cris, there's definitely something pervasive going on - despite all the negative tests.
Normally, I'd follow Occam's Razor and look for one single underlying cause. But in your case, there might be at least two:
- early hemachomatosis creating various bad effects (such as your heart SVT; and perhaps your early onset cataracts [without hyperglycemia] because of hyperferritinemia)
- some genetic immunodeficiency leading to the intractable cold sores, toe fungus, and also to the possible granulomas and to the lymphadenopathy
The geographic tongue is seen by most docs to be just an isolated, benign oddity; but I'd see it as as sign that there is other immune dysfunction present.
It's good that you are so thorough. I think your best chance is to become very educated in this theory as above; and then you can make a logical presentation to any consultant that you see, and hopefully get them to investigate. I'd want a serum ferritin test for starters. This is guesswork but that's the only way to proceed for now.
That's off the top of my head. What's your reaction? This can use further discussion.
Normally, I'd follow Occam's Razor and look for one single underlying cause. But in your case, there might be at least two:
- early hemachomatosis creating various bad effects (such as your heart SVT; and perhaps your early onset cataracts [without hyperglycemia] because of hyperferritinemia)
- some genetic immunodeficiency leading to the intractable cold sores, toe fungus, and also to the possible granulomas and to the lymphadenopathy
The geographic tongue is seen by most docs to be just an isolated, benign oddity; but I'd see it as as sign that there is other immune dysfunction present.
It's good that you are so thorough. I think your best chance is to become very educated in this theory as above; and then you can make a logical presentation to any consultant that you see, and hopefully get them to investigate. I'd want a serum ferritin test for starters. This is guesswork but that's the only way to proceed for now.
That's off the top of my head. What's your reaction? This can use further discussion.
1 Comments
hem-o-chromatosis :) not hema
COMMUNITY LEADER
Taking any immunosuppressive meds would likely be quite bad. Vaccines might be bad.
In another vein, blood thinners like aspirin, vit E, fish oil and even cinnamon would be bad.
In another vein, blood thinners like aspirin, vit E, fish oil and even cinnamon would be bad.
1 Comments
Once again, thank you for your time and feedback. Rather than put a long follow-up here I have sent you a message and friend request if you would like to provide any more insight. I have listed out in greater detail the reports I've gotten back, general medical history, and other possibly useful information in my profile journal.
Again, thank you, truly!
Again, thank you, truly!
COMMUNITY LEADER
"Since this started I have had problems retaining weight."
If it's from reduced calorie intake, then that's nothing to do with wasting from cancer. Immune system dysfunction can easily affect the GI tract and squelch the appetite.
"Hard gainer/ectomorph."
Bravo to you, for being knowledgeable on those terms and also for being dedicated in the exercise. What would life be without working out, eh? :)
If it's from reduced calorie intake, then that's nothing to do with wasting from cancer. Immune system dysfunction can easily affect the GI tract and squelch the appetite.
"Hard gainer/ectomorph."
Bravo to you, for being knowledgeable on those terms and also for being dedicated in the exercise. What would life be without working out, eh? :)
COMMUNITY LEADER
cris, everything here is screaming out to me, "forget lymphoma and zero in on the granulomas".
But still, we'll need more clues, in order to work out how the low platelets factor in.
But still, we'll need more clues, in order to work out how the low platelets factor in.
COMMUNITY LEADER
Thank you for your gracious expression of gratitude, I appreciate it.
"Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness"
Whatever caused those symptoms (it is commonly strep throat, from strep bacteria) also caused the enlargement of the jugulodigastric node.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
Since that node is deep and also behind a muscle, a CT can penetrate and see it better than the US that first spotted it - otherwise US is better on surface nodes. Using contrast along with CT means the CT can see the structure inside the node, not merely its outer dimensions. "Loss of hilum" would have been alarming for cancer, but thankfully you don't have that.
"glass of wine It doesn't burn or hurt per say but it certainly becomes uncomfortable."
Probably swelling, because alcohol is a vasodilator.
"Recently the area has started to itch, and the lymph node feels tight (if that makes sense).?" Yes, swelling again... plus the itch is likely caused by histamine produced by immune cells.
Btw, the "B-symptoms" from lymphoma are usually in late stage, not beginning.
"but touching it does make it feel more tender."
Probably you have still some reactive process going on inside there, even if there also is fibrosis.
"another CBC"
In the US, a CBC is around $35. So a doc should not be resistant to order such an inexpensive test for you there.
===================
Now let us switch to a grand view, considering the effects seen in your lungs and also liver via CT. Is it possible you might have had tuberculosis? The alarm word is "granulomas". Please research that a bit, then get back with any questions. Granulomas are something of a mystery entity, produced by the immune system and can be involved in mystery conditions. And granulomas can also fill up a lymph node.
Granulomas are found with TB, but also in a mystery condition called Sarcoidosis. Each can effect lungs, and less commonly the liver, and also neck nodes. Each can also cause throat symptoms.
In addition, a damaged liver can result in reduced liver-produced "coagulation proteins", which can cause easy bruising/bleeding, such as in petechiae.
Have you had the common "liver function" blood tests? If they are abnormal, I'd straightaway want testing done for the levels of your clotting proteins.
"Over these past 7 months I've experienced labored swallowing, throat dryness, very mild hoarseness"
Whatever caused those symptoms (it is commonly strep throat, from strep bacteria) also caused the enlargement of the jugulodigastric node.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
Since that node is deep and also behind a muscle, a CT can penetrate and see it better than the US that first spotted it - otherwise US is better on surface nodes. Using contrast along with CT means the CT can see the structure inside the node, not merely its outer dimensions. "Loss of hilum" would have been alarming for cancer, but thankfully you don't have that.
"glass of wine It doesn't burn or hurt per say but it certainly becomes uncomfortable."
Probably swelling, because alcohol is a vasodilator.
"Recently the area has started to itch, and the lymph node feels tight (if that makes sense).?" Yes, swelling again... plus the itch is likely caused by histamine produced by immune cells.
Btw, the "B-symptoms" from lymphoma are usually in late stage, not beginning.
"but touching it does make it feel more tender."
Probably you have still some reactive process going on inside there, even if there also is fibrosis.
"another CBC"
In the US, a CBC is around $35. So a doc should not be resistant to order such an inexpensive test for you there.
===================
Now let us switch to a grand view, considering the effects seen in your lungs and also liver via CT. Is it possible you might have had tuberculosis? The alarm word is "granulomas". Please research that a bit, then get back with any questions. Granulomas are something of a mystery entity, produced by the immune system and can be involved in mystery conditions. And granulomas can also fill up a lymph node.
Granulomas are found with TB, but also in a mystery condition called Sarcoidosis. Each can effect lungs, and less commonly the liver, and also neck nodes. Each can also cause throat symptoms.
In addition, a damaged liver can result in reduced liver-produced "coagulation proteins", which can cause easy bruising/bleeding, such as in petechiae.
Have you had the common "liver function" blood tests? If they are abnormal, I'd straightaway want testing done for the levels of your clotting proteins.
COMMUNITY LEADER
"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?"
Not out of bounds at all, in your case, to ask -- but I'd still expect a "no" answer for now.
Not out of bounds at all, in your case, to ask -- but I'd still expect a "no" answer for now.
2 Comments
I appreciate you taking the time to respond, and with so much depth. I went back a reviewed notes from my past GP visit (referral to CT Scan) and the results of the scan. Of note were....
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
CT Scan result notes:
-"Lymph nodes: no suspicious lymphadenopathy. Scattered small symmetric subcentimeter short axis cervical lymph nodes are noted without evidence of cavitation or calcification."
-"Lung apices: Biapical pleural parenchymal scarring is noted. Otherwise, lung apices are clear."
-"Paranasal sinuses: There is a subcentimeter right maxillary sinus mucus retention cyst. Otherwise paranasal sinuses are clear."
-everything else said "normal" and there were no measurements or sizes included in the report.
I was having right illiac fossa pain around the same time so they scanned that as well.
-"Liver: THere is no suspicious enhancing hepatic mass. .....there is a 4mm right hepatic lobe hypodensity, too small to characterize. Punctate right hepatic lobe capsular calcification is present on axial image 60."
-"Biliary System: ....gallbladder is partially distended and otherwise unremarkable"
-"Osseous Structures: Lumbosacral degenerative disc disease is present (I'm old, tall, and have carried a lot of weight for work)
-"IMPRESSION: Hepatic splenic calcifications suggest the sequelae of prior granulomatous disease"
-"IMPRESSION: Lumbosacral degenerative disc disease"
Latest Blood Work (the number in ( ) is what was listed as "normal range"). I have only pulled out the numbers I thought were of concern:
-Hb: 143 (130-178) {2019 it was 138 on a "normal scale" of 150-450}
-Hct: 0.42 (0.4-0.5)
-Platelets: 176 (150-400)
-Lymphocytes: 1.2 (0.5-4.0)
BMI = 20.7 185lbs, 79in, exercises 45 min/day (x5 days): Normal weight is 200lbs, exercise 60min/day (x6 days). Since this started I have had problems retaining weight. Hard gainer/ectomorph.
I am going to call to schedule an appointment tomorrow, for blood work and evaluation again. I don't suspect I will be seen until late next week at the earliest. If you have any additional questions or input I would appreciate the feedback. I am hoping this adds more context to the situation, and as always I thank you for your time, patience, and consideration.
"[patient] ultrasound showed 10mm jugulodigastric node...(please do CT w/ contrast)..."
CT Scan result notes:
-"Lymph nodes: no suspicious lymphadenopathy. Scattered small symmetric subcentimeter short axis cervical lymph nodes are noted without evidence of cavitation or calcification."
-"Lung apices: Biapical pleural parenchymal scarring is noted. Otherwise, lung apices are clear."
-"Paranasal sinuses: There is a subcentimeter right maxillary sinus mucus retention cyst. Otherwise paranasal sinuses are clear."
-everything else said "normal" and there were no measurements or sizes included in the report.
I was having right illiac fossa pain around the same time so they scanned that as well.
-"Liver: THere is no suspicious enhancing hepatic mass. .....there is a 4mm right hepatic lobe hypodensity, too small to characterize. Punctate right hepatic lobe capsular calcification is present on axial image 60."
-"Biliary System: ....gallbladder is partially distended and otherwise unremarkable"
-"Osseous Structures: Lumbosacral degenerative disc disease is present (I'm old, tall, and have carried a lot of weight for work)
-"IMPRESSION: Hepatic splenic calcifications suggest the sequelae of prior granulomatous disease"
-"IMPRESSION: Lumbosacral degenerative disc disease"
Latest Blood Work (the number in ( ) is what was listed as "normal range"). I have only pulled out the numbers I thought were of concern:
-Hb: 143 (130-178) {2019 it was 138 on a "normal scale" of 150-450}
-Hct: 0.42 (0.4-0.5)
-Platelets: 176 (150-400)
-Lymphocytes: 1.2 (0.5-4.0)
BMI = 20.7 185lbs, 79in, exercises 45 min/day (x5 days): Normal weight is 200lbs, exercise 60min/day (x6 days). Since this started I have had problems retaining weight. Hard gainer/ectomorph.
I am going to call to schedule an appointment tomorrow, for blood work and evaluation again. I don't suspect I will be seen until late next week at the earliest. If you have any additional questions or input I would appreciate the feedback. I am hoping this adds more context to the situation, and as always I thank you for your time, patience, and consideration.
Sorry that 138 was for my Platelets in 2019. I need to do a better job reviewing before hitting submit.
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