Lymetutu- I never had it but it has stayed now about 3 months. It does'nt come and go...it stays everyday!!!
Carol-were you diagnosed with that autoimmune condition?? How can I find out if that is it?
Does that mean it will stay???
YIKES...they actually feel arthritic. I pull on them and they crunch and pop like knuckles.
My LLMD said lyme like the ears but I find it so wierd that it was never there before and even though I know herxes bring wierd stuff...does'nt that stuff leave???
Could it be that I am having one CONSTANT HERX???
Posts: 111 | From San Francisco | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Once there was a forum for strangest symptoms.
I listed ear pain as one of mine.
Feels like I have slept on a piece of cement at night.
The pain will literally wake me up.
Once I turn over, it takes a while for the throbbing to stop, but it does eventually.
Only thing I can relate this to is while on Babesia meds, this went away.
Off babesia meds, it comes back.
Who knows?
Mine don't pop. No other connective tissue issues either at this time.
Hopefully this symptom will go away for good one of these days.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tailz
Unregistered
posted
quote:My outer ear (cartilege part) gets sore especially when I sleep on my ear, either one. This seems to happen when I'm in a relapse.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Me too! I wake up and my ear is bright red and hot and the whole side of my head and neck hurt. You'd think I was sleeping on rocks and not a down pillow.
I took pictures and brought them to the doc. He checked me carefully and my cartiledge seems alright.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
This is a good example of why we should not encourage strong herxes and we should not just "tough them out".
The herx can elicit an immune response that goes into auto-immunity.
I would not stop with your doctor's opinion. I would get a second opinion from a rheumatologist. If diagnosed and treated early enough, you may be able to arrest this condition before it affects your heart valve.
Being ruled out by a rheumy would give you valuable peace of mind.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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I can't find relief in this though since it is TERRIBLE..ahhhh!!! And I feel for anyone having to feel this symptom.
MY EARS HURT and I DON'T LIKE IT! NOT ONE BIT!!
A Rheumatologist huh? I don't like them....they told me there was no way in hell I had lyme.
Plus, what can they do? Give me steriods? Is that what they do when you have autoimmune problems?
They give you immunosuppressant drugs..NO good there.
And is this for sure a autoimmune thing in everyone??
Can it not be just a crazy wierd lyme symptom like so many others??
I am freaked and I mean FREAKED to think this is autoimmune. I have all the joint problems too...I have more connective tissue and joint issues then anything else at this point in treatment.
Posts: 111 | From San Francisco | Registered: Feb 2007
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Carol in PA
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posted
quote:Originally posted by jenschasinglyme: Plus, what can they do? Give me steriods?
Jens, I know someone with a diagnosis of Relapsing Polychondritis.
Apparently, when the cartilage is quite inflamed, damage can result if the docs don't prescribe steroids to reduce inflammation.
There can be visible damage to the ear cartilage. The cartilage at the bridge of the nose can collapse. The cartilage of the trachea can collapse.
Maybe you need to be checked out so that this diagnosis can be ruled out.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Thank you everyone for your input. I will as my LLMD who is wonderful and open minded to check me out for autoimmune stuff as well as backing down from the meds.
I have a strange feeling he wil say no on the meds!! Plus, I stopped my IV for almost a week due to a picc being pulled and I still had the issue.
I was still on Babesia meds though...so not off treatment compeletely!!
I am really scared guys about the autoimmune thing. That paticular condition is crazy scary along with a Lyme, Babesia and Bartonella diagnosis.
I can't take the stuff they would want to give me to get the inflammation down.
Carol, does the person you know with this condition have Lyme Disease??
Thanks again for everyone who has responded and reached out to help me.
It has been very thought prevoking. Scary but much appreaciated!!!!
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Carol in PA
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posted
quote:Originally posted by jenschasinglyme: Carol, does the person you know with this condition have Lyme Disease??
I don't know, as she has never had a test from Igenex. But I suspect she may.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I'm not sure if this helps anyone else but for the outer ear pain, like from rock pillows, an ice pack is all that seems to help.
Heat might help for other ear pain. I don't imagine it could hurt to try one or the other to see if it gives you some relief.
Jen, Don't freak about the possibility of the autoimmune thing. The doc examined my ears, nose and cartiledge and there seemed to be no or insignificant changes. I did a big "Phew" then also!
Other than the outer ear thing my ears hurt, intermittantly, but I am off tx right now. They hurt way more on and especially during an herx.
Hang in there kiddo
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
I have sore, red ears and they TWITCH. Especially the left one. But they don't crunch. I do get terrible tinnitis and, in my right ear, two repeating musical notes like a dump truck backing up.
And they hurt like hell, inside and out.
It's a nerve issue, and since I've had it for so many years without the tissue destruction, I doubt that it's the same condition as polychondritis. By now my ears would be gone!
There is nothing that compares to this pain. I find that heat applied to my neck helps. And pain meds, which for me is Vicodin and Fiorocet.
It did get worse when I was taking ABX.
I really do feel for you. (((( ))))
I'm seeing a new doctor on Monday so I'm hoping I can start treatment again. But dreading it at the same time.
I would not recommend steroids. I think the reason my cranial nerves are so seriously affected is the years of nasal steroid sprays I used for misdiagnosed allergies. Posts: 353 | From Florida boonies | Registered: Nov 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
IF it IS this, it does sound like it is herxing because it developed at this stage of tx- Jen, there is an association with HLA-DR4 with polychrondritis!!!! SO that leads me to believe it is a possible Lyme effect in more than the one documented case I could find- like SO many other diseases & syndromes-
Do you have an elevated erythrocyte sedimentation rate? It is the only consistent diagnostic criteria as far as bloodwork- if you are worried about it, find out-!!!
Almost every Lymie I have ever met has enflamed and burning ears at one point or another, so unless you haev an elevated e sed rate I wouldn't worry about it- and EVEN then- if you DO- then I would assume it is transient until you know otherwise-
Bestest wishes to you, Sincerely, Sarah ************************** 1: Rev Rhum Engl Ed. 1997 Oct;64(10):589-90.
Coexistent dermatomyositis, relapsing polychondritis, and positive Lyme serology. A case-report.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dr. Bleiweiss (I am writing out his name because he is deceased) also documented a patient of his with RP- as follows- note reference to age- polychondritis is USUALLY diagnosed in middle-aged or elderly people-(*)!!! you're not*)!
So this is a patient WITH this awful RP disease FOR SURE, biopsied as such, and he got 100% symptom free- the deformed hands were damaged from before his treatment-
so worst case scenario you did have this thing- you can STILL get symptom free with tx!!! ***************************************** QUOTE from Dr. Bleiweiss (deceased):
Another patient of mine recalled recurrent and migratory polyarthritis since he was 18 (1966). Monthly Medrol Dose Packs (steroids) failed to alter the clinical picture.
In 1987, he was hospitalized with an acute exudative synovitis of the knee, whereupon ear lobe biopsy demonstrated the classic histologic feature of
Relapsing Polychondritis, a very rare disorder with a peak onset in the 5th decade of life.
Inspite of continual high dose steroid treatment, (and later methotrexate with non-steroidal anti-inflammatory agents), he eventually developed a deforming arthropathy in his hands which progressed slowly between 6/90 to 12/92.
Earlier physicians had discounted the significance of a positive Lyme Elisa = 1.09 in 4/91 as "low titer". An unsuspected encephalopathy betrayed its existence as memory and concentration impairment beginning 1/91. The patient presented for LD evaluation 1/93. Laboratory values include: an IgG by Elisa = 14.7, IgM by IFA = 80 and the Western Blot had bands at 31 and 41 KDA. the polysynovitis and encephalopathy proved rapidly responsive to antibiotics for LD.
The patient was quickly emancipated from the other medications although steroids had to be slowly tapered and are now down to an inconsequential dose without recurrence of rheumatologic complications.
The patient, although symptom free while on antibiotics, has permanent crippling deformities of the hands.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thank you Sarah for all your help. I will for sure have my LLMD check my SED rate...
I know this was done a few months ago and it was normal.
I recieved another message ( a pm ) from someone who said she thought it was the cyst running to the ear cartilage because it was trying to find a place the antibiotics could'nt get to.
My LLMD told me hyperbaric would help the antibiotics get in there ( I am on IV) so hopefully it will work out.
Thanks again!! Everyone here is SO helpful and has been so supportive. I really appreaciate all the warmness that people offer here on this board.
Posts: 111 | From San Francisco | Registered: Feb 2007
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