trueblue
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(updated in last post) Grrrr...
For the past few days I've been getting a ticking and twitching kind of feeling just inside my left ear. Is that what it is, twitching? Very, very annoying and I can hear it.
I've had some fullness in my ears and head, a large ouchie thing on the back of the left ear and a swollen gland on that side. Some ringing on and off, mostly on the right side. Also heightened sound sensitivity.
Today, I also woke up with that freaky outer ear pain on the right ear that I've attempted to describe repeatedly. Woken from a sound sleep to severe pain in the outer(cartiledge part) of the ear. It's bright red, hot and makes the whole side of my head/neck hurt. (mostly connective tissue, etc)
Yes, this is the ear I was sleeping on, it only happens on that side and NO my ear was not bent. It was on a down pillow. I know ice helps, somewhat, but there's no going back to bed after this. It's 2 hours and my ear is still hot and the side of my head hurts. Bah, I have other headaches to worry about, I don't need this one.
What are these things and when do they stop?
sorry so long and TIA for any light you can shed, trueblue with a red ear
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Carol in PA
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Blue, Since I've been on LymeNet, I've often read about red, inflamed ears being a symptom of Lyme, or maybe a co-infection.
My niece has this too, with her ears and nose. It's been diagnosed as Relapsing Polychondritis, and she was given a prescription of prednisone for it. The steroids reduce the inflammation.
Carol
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trueblue
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Carol, What I find strange is it only happens when I sleep on it... the red hot, sore, thing.
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Jill E.
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Hi,
I recall several discussions about this, too, because I had posted on those threads, too. When I first was becoming symptomatic with Lyme, but didn't realize I had been bitten, my left outer ear kept getting really red and sore.
My internist kept saying he thought it was the headphones I'd wear on my daily walk. Mind you, I've been wearing headphones on walks for years and had never had the symptoms.
I agree that since so many of us have it, it must be Lyme or a coinfection. Lately, I've had a mild recurrence. I'm wondering if it's part of Bartonella because I'm really struggling with Bartonella symptoms right now. But I also am still going through Lyme treatment, so who knows which disease it is.
I only get it on my left ear, despite the fact that my Lyme symptoms are almost completely symmetrical on both sides of my body. Weird.
Jill
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trueblue
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thanks Jill, I also posted on those threads, I did a search this morning and read all our posts over. I just can't believe it's happening again.
I only get this with my right ear. (Although, if I put on headphones both hurt but the right more.)
I also think it's TBDs, the Polychondritis stuff fits to a point but it's mostly one sided, which doesn't fit.
I was also thinking Lyme, Bart and/or Babs. I'm on Babs treatment currently but my ABX has been stopped for a few days waiting for LTFs to come down. Maybe that's why this flared.
(Or the nasty side effects from the Colchicine that I was taking. (A very small amount made me feel toxic.) Which I think are what raised My LTFs, I took it for 5 days before the blood test. After reading a bunch about it yesterday I see it reacts, sometimes fatally, with erythromyacin and clarithromyacin. I'm concerned that it was a bad idea with telithromyacin.
The previous 2 months on Ketek my liver functions were dropping rather than rising. They were sitting happpily at 20 and 21. I'll retest again in 2 weeks without the Colchicine and hopefully can go back to the Ketek.)
I'm afraid to go to sleep again and have to wait until the pain subsides, pfft, my ear is still hot and the right side of my head and most of my body hurts.
Ok, back to reading about Relapsing Polychondritis and to put some ice on my head.
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AliG
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Hi true!
I seem to remember having these strange thinks you describe years ago. I don't know where they came from or why they went away?? I think I did use ice, though. As for the sore bump thingy? I think I tried to pop it & stuff, which just made it hurt more. I think that went away on it's own after a while.
So far, I know I have Lyme & Babs. I don't know yet if I've got Bart or any others. I think I might know more 10/5 when I go for follow-up.
I'll have to write this down to ask. I had completely forgotten about that. (Big surprise! )
Ali
PS- put some water in a zip-lock freezer bag & freeze it lying flat. Put it in another one with a little water, seal tight and check for leaks. Wrap in a dish or hand towel and sleep on that.
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posted
I have had a crawling sensation in my ears (mostly on one side). I have since learned that others experience this as well and that it could be the critters stirred up and exiting. I found that a Q-tip dipped in a little salt water and placed in the ear has almost completely diminished this sensation.
Sadie
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trueblue
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Hi Ali, (I tried to PM you back the other day, I think it was yesterday, but your box was full.)
I just did the same thing went back and highlighted this symptom in my list that I'm trying to keep up daily, hahahaha.
I am sure about Lyme and Babs, have been for a while and just recently got some positive tests for viruses. So far everything else tests out negative but so did Lyme until I was a ways into treatment.
Oh, yeah the trying to pop thing, ouch, it's slowly going down, very slowly. It kind of freaks me out that these things just seem to happen randomly. I've had and have worse symptoms these are just puzzling to me and annoying.
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trueblue
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quote:Originally posted by sadie420: I have had a crawling sensation in my ears (mostly on one side). I have since learned that others experience this as well and that it could be the critters stirred up and exiting. I found that a Q-tip dipped in a little salt water and placed in the ear has almost completely diminished this sensation.
Sadie
Oh, really, that's very interesting. (Did it sometimes feel like ticking/twitching, too?) I've had itchy crawly feelings without being yeast-ridden.
I could try that. I have tried a Q-tip with alcohol in the past and it helped some for the itchiness.
Thank you, Sadie
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AliG
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quote:Originally posted by trueblue: [Q] It kind of freaks me out that these things just seem to happen randomly. I've had and have worse symptoms these are just puzzling to me and annoying. [/Q]
I know exactly what you mean! I guess maybe it's actually fortunate that I'm able to forget about them soon after they stop?
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trueblue
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quote:Originally posted by Carol in PA: Blue, Since I've been on LymeNet, I've often read about red, inflamed ears being a symptom of Lyme, or maybe a co-infection.
My niece has this too, with her ears and nose. It's been diagnosed as Relapsing Polychondritis, and she was given a prescription of prednisone for it. The steroids reduce the inflammation.
I'm sure it's secondary to the TBDs but I have way too many of those symptoms.
(Not the least of which is a very early diagnosis of costrochondritis shorty after finding something ate most of the cartiledge in my A/C joints, destroying them over 12 years ago. Years of Docs and PTs saying connective tissue... blah, blah, blah, blah.)
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trueblue
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quote:Originally posted by AliG: I know exactly what you mean! I guess maybe it's actually fortunate that I'm able to forget about them soon after they stop?
Good point tomorrow this all be something else, or in 5 minutes!
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treepatrol
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Thats one of the symptoms I totally forgot huh
It dosent do anymore still get crunchy neck
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AliG
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PS- Thanks about the maibox. I cleaned it out
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trueblue
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Tree ~ has it been more than 5 minutes?
I have crunchy everything. People reprimand* me for cracking like I can help it. Makes me feel better though.
*I haven't a clue how to spell reprimand!
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trueblue
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Ok, the ear ticking/twitching thing comes back at night with the elevated fever. And all the other night-time lovelies, vertigo, nausea, palps, forgetting how to breathe, sore throat, etc...
Thanks Ali, I'll try it again, if it isn't full already.
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lymeinhell
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You sure you don't have Bart? The red hot ear brings me back to my days of being untreated. The outside cartilage would get VERY sore and my ear would be as red as a tomato.
Forget using the phone - it just made it worse (plus I was SOO sound sensitive when this was going on, phone calls tripped me out).
I think you might be herxing, my dear.
I've been told the little buggers try to hide out in hard to hit places (like ears, finger tips, tips of toes). I've had episodes in those places too. Top of a toe would kill for 2 days and then be gone.
Ice packs were the only thing that brought relief then.
But now that I know more, I wonder if the ear thing is actually a muscle spazm traveling from the back of your head someplace. Poke around with a knuckle back there and see if you can find a sore spot.
If you do, push really hard and see if your ear feels better.... If so, you need a trigger point injection to bust that up (plus a whopping dose of Flexeril, and an IV Magnesium if you can get your hands on one).
If none of those are available, try getting a joint cream with Arnica in it (Nekken makes a good one) - and put it on the knot 2-3 times a day while jamming your knuckle in there. It hurts like heck, but will eventually give.
Feel better!!!
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Carol in PA
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Blue, I read the symptoms list at the link you provided.
Many of the symptoms for Polychondritis looked like tick borne disease to me.
I did suggest that to my sister, and she rejected the notion.
Carol
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trueblue
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quote:Originally posted by lymeinhell: You sure you don't have Bart? The red hot ear brings me back to my days of being untreated. The outside cartilage would get VERY sore and my ear would be as red as a tomato.
Forget using the phone - it just made it worse (plus I was SOO sound sensitive when this was going on, phone calls tripped me out).
I think you might be herxing, my dear.
I've been told the little buggers try to hide out in hard to hit places (like ears, finger tips, tips of toes). I've had episodes in those places too. Top of a toe would kill for 2 days and then be gone.
Ice packs were the only thing that brought relief then.
But now that I know more, I wonder if the ear thing is actually a muscle spazm traveling from the back of your head someplace. Poke around with a knuckle back there and see if you can find a sore spot.
If you do, push really hard and see if your ear feels better.... If so, you need a trigger point injection to bust that up (plus a whopping dose of Flexeril, and an IV Magnesium if you can get your hands on one).
If none of those are available, try getting a joint cream with Arnica in it (Nekken makes a good one) - and put it on the knot 2-3 times a day while jamming your knuckle in there. It hurts like heck, but will eventually give.
Feel better!!!
Actually, I'm sure I have Bart, just never got a test saying so.
Hmmm... I went in to a lovely 2 month herx from the ketek last week. It was also 3 months on Artemisinin and 2+ on malarone. I started herxing Babs pretty intensely and then it turned into massive headache, spinnies and nausea. I kept thinking it's going to end but new and more wonderful things keep happening.
I went to the chiro the Monday because the back pain was so unbearable and he did adjust a bunch of stuff and tried to release those knots in the back of my head (and my lower back). Ouch! I've been pressing on them and they're still really sore and tight. Makes me feel like my glands are swollen too but I can turn my head today!
I have some tennis balls in a sock that I can use to try and work out those whateverocciptal thingies. I've got some Bio-Freeze, think I'll gook up my hair with it?
Ok, I'm a little slow, I hadn;t thought about multiple TBD herxes. Pffft!
What day is it I get a break?
Thanks LIH (somehow I feel a little better if these things make just a little sense)
(edit: I also have twitching in other places that... um... have never twitched before. Even stranger than ears. I'll not elaborate on that, though.)
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trueblue
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quote:Originally posted by Carol in PA: Blue, I read the symptoms list at the link you provided.
Many of the symptoms for Polychondritis looked like tick borne disease to me.
I did suggest that to my sister, and she rejected the notion.
Carol
Carol, I wish your sister would listen to you. Seems to me this would be better to have as a secondary thing thereby having some hope of it being treatable.
And this is exactly why I think everyone should listen to you!
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posted
Trueblue - are you sure your not one of us Aussies? There is a famous Aussie song called true blue, and they played it for Steve Irwin's memorial - was so sad!
Anyway, to the ear!
Over the past few nights, while lying on my left ear, I felt the whole thing twitch, yes my WHOLE EAR moved, well at least it seemed to. Is that possible? I have not had the burning yet (touch wood) but I sure do feel as though the little critters are creeping around in there, as well as in my nose, scalp etc.
I am also having pressure, clicking/popping sounds which seem to resemble Meniere's Disease.
Anyway, I am not much help, but if you find a concrete answer it would be great to hear about it!
Steve - The Aussie in China!
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trueblue
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quote:Originally posted by ShangSD: Anyway, to the ear!
Over the past few nights, while lying on my left ear, I felt the whole thing twitch, yes my WHOLE EAR moved, well at least it seemed to. Is that possible? I have not had the burning yet (touch wood) but I sure do feel as though the little critters are creeping around in there, as well as in my nose, scalp etc.
I am also having pressure, clicking/popping sounds which seem to resemble Meniere's Disease.
Steve - The Aussie in China!
Hi Steve ~ Sorry it took me so long to reply... um.... I lost track of my own thread.
Nope, still not an Aussie but have 2 friends there if that counts.
Anyway, to the ear...
I have no idea what's posssible. I haven't had the whole ear twitch, yet, but you never know. The left side of my head feels pretty weird and somewhat tingly right now so maybe later.
I just noticed you said scalp, too. Does that mean I'm not the only one to have my scalp twitching/crawling? It feels like roaming goosebumps; most times it's one side or the other and sometimes switches.
Freaky switching twitching. (Ack! just thinking about it makes it happen, left ATM. Pffffft.)
I figure if it goes away I'll know my treatment works but am unlikely to know the actual cause. Symptoms generally resolve as mysteriously as they appear.
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trueblue
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Thank you Kat, I've never tried either. The fairly constant ear thing is kind of new for me.
I have been on Cephalosprins(sp?) before but not in a very long time.
I've been off treatment, for no good reason, for far too many years and am finally having another stab at it. Heh, didn't expect the stab to be in the ear as well. Go figure.
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lymeinhell
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Just another thought to add....
Could it be the yeastie beasties rearing their ugly head? I once had an attack of the itchies in my ear that no Qtip was ever gonna cure. I don't think if I stuck a fork in there it'd ever stop.
I called a holistic friend who said yeast... I put some thieves oil (clove oil) on a Qtip and ... Yowza!! Once the intial shock of burn wore off, the itching completely stopped (3 minutes). Makes sense - it's yet another warm dark place for fungus to hide. I know my dogs are prone to stuff there.
FWIW...
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trueblue
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Good thought, Julie, luckily the itchies are minor at the moment. Well, were until you said that.
I've used alcohol on a Q-tip before when it's been ithcy. I don't think I'm overly yeasty at the moment but wouldn't swear to it.
Thanks
Now, where did I put those Q-tips?
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posted
I just wanted to add that that wonderful little trick with the Q-tip in salt water is working quite nicely for me. Kudos to sadie.
I've been mighty intrigued by the salt benefit overall and wondered if I lived by the ocean and bathed in it regularly, I would be healthy.
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posted
Ear/jaw pain was my very first Lyme symptom. I woke up with pain in my ear and thought I slept on it wrong. The next day it was even worse. I didn't know it was Lyme at first (I was busy looking for the bullseye I never got).
I used to have "ear thumping" everyday. A funny sound, whooshing, thumping feeling in my ear. Now I have it only about once a week. Stress will bring it on. Stress makes all my symptoms worse.
My ear pain started to get better when I got my LLMD and switched from low dose doxy to high dose tetra.
I know I am getting better when my ear doesn't hurt! hats
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You can also rub salt water on your head. I haven't had this problem but have heard others use it with success for what you describe.
Sadie
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trueblue
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quote:Originally posted by hatsnscarfs: Ear/jaw pain was my very first Lyme symptom. I woke up with pain in my ear and thought I slept on it wrong. The next day it was even worse. I didn't know it was Lyme at first (I was busy looking for the bullseye I never got).
I used to have "ear thumping" everyday. A funny sound, whooshing, thumping feeling in my ear. Now I have it only about once a week. Stress will bring it on. Stress makes all my symptoms worse.
My ear pain started to get better when I got my LLMD and switched from low dose doxy to high dose tetra.
I know I am getting better when my ear doesn't hurt! hats
Hats ~ Good to see you!
You described it exactly, the thumping thing. It's pretty much constant right now, although, the pain has lessened considerably.
It driving me mad... like I needed one more thing to push me over the edge.
The muscle spasms in the head, neck, jaw (one of my earliest symptoms, as well) and shoulder are definately connected and are not helping this matter at all.
I'm on hold until next week on my ABX and kind of frustrated, although I'm not sure that'll help either.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ And Thank you, Sadie and SayYesh.
You've reminded me of a friend that used to heat salt in cheesecloth in a frying pan for ear aches. He would hold it on his ear and said it drew out the infection or pain or something.
While hot salt doesn't sound that much fun to me right now, I'd probably burn my ear off causing more pain, salt water seems pretty darned safe.
I'll report back later.
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trueblue
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Darnit! I woke with that painful red hot ear again, hurts my whole side of the head, and everything connected to it all joints and connective tissue on my right side.
I did take pictures of both ears for comparison, this time.
(No ear thumping or twitching, that did seeem to be as herx and resolved along with the palpitaions, increased heart rate and BP.)
So why had this come around in 9 days?
What cycles in 9 days? And Why? (I have been on Babs meds with no ABX for 10 days.)
I'm bringing this up just so I can see the time frame and track it. (It seemed to happen just as soon as I got a break in my constant fever again.)
The good news is I already have chills and my face is hot so maybe will have a fever by later and this will lessen.
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Tincup
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I'm raising my hand.. ou ou ou.. here I am...
About 20-50% of patients with Lyme disease have multiple lesions (from hematogenous dissemination). The higher figure is from earlier studies; current information suggests that the rate of multiple lesions is closer to 20%. Borrelial lymphocytoma, a nodule usually found on the ear lobe or areola of the nipple, develops in some patients early in the course of disease. This is more common in Europe. Almost exclusively observed in Europe, acrodermatitis chronicum atrophicans is a rash that patients describe as inflammation or thinning of the skin, usually on the distal legs and hands. Neurologic symptoms
Borrelial lymphocytoma BL is a subacute cutaneous manifestation of LB that has been defined as a stage 2 (early disseminated infection) manifestation, but may also occur directly at the site of a tick bite (15). Thus, BL can also represent a stage 1 (early localized infection) manifestation of LB. BL is the least common manifestation of LB (5%) and occurs more often in children than in adults. Extracutaneous signs and symptoms are very infrequent. BL is a solitary lesion in most patients. It is a bluish-red nodule or plaque with a size between 1-5cm, sharply demarcated, and often with a slightly atrophic surface. On palpation, BL is a soft and non-tender lesion. BL is located typically on the earlobe (Fig. 6), breast (nipple, areola), and less frequently on the scrotum or the (anterior) axillary fold. The diagnosis is based primarily on the clinical aspect, but histopathology, which reveals a B-cell pseudolymphoma, is mandatory for the definite diagnosis of BL, in particular to rule out B-cell lymphoma of the skin. For this differentiation, it is sometimes necessary to perform additional immunohistochemical and PCR studies to exclude monoclonality. Although some patients with BL may be seronegative, Bb IgG and/or IgM antibodies are found in the serum of 80% of all BL patients. Direct detection of Bb or Bb specific DNA in lesional skin by culture or PCR are helpful addition to the diagnosis. Differential diagnoses of BL include insect bite reactions, cutaneous lymphoma, foreign body granuloma, sarcoidosis, cutaneous metastasis, keloid, perichondritis, and granulomatous contact dermatitis due to golden earrings.
I am NOT saying this is what is happening.. just that I have had this.. and it sounds kinda like what you describe.
Am I close?
Thanks muchly, TC!
I had to go look my pics from this morning to see.
(It's not easy to take a picture of your own ear with a cell phone, in case anyone was wondering.)
It's close but... with no involvement of the ear lobe on that side at all.
The redness faded considerably in a few hours but remains slightly colored even so. It seems to be the area where there's cartiledge for the most part.
It matches pretty close with the Relapsing Polychondritis that Carol posted about above.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
However... the left ear, while not at all red, is the one that has the recurring lump in the earlobe.
And lately a bluish dark thing behind (swelling has gone down in a few weeks and I can touch it) that looks like a smaller one of the pictures from that last article. It is on the back of the cartiledge part of the left ear.
(I had something similar behind my ear that I thought was a swollen gland for the longest time that was also bluish/purple and felt like a marble.)
on that side are also a couple of skin things, that are not pimples, on my neck and under the jaw that take forever to heal.
One of those I tried to get to open and now will take even longer to shrink I'm afraid, if it does at all. (The doc mentioned that perhaps I need one of those cone dog collars.)
It seems like each side has a different thing going on. Pfft... why am I not surprised.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
TC ~ of course, we know, anything is possible. I'm still reading the other links. I only read through the one with the pictures so far...
because it had pictures.
From what I have read so far... if it is... it's a fairly early phase and pretty recent manifestation(within the past year or 2).
Gonna go back to reading.
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