Please Help With Opinions - Lump Near Ear Causing Hellish Pain

Hi, I am newly registered here and really need some feedback .

Very brief - 5 years ago I had migraines and leg pain, but nothing debilitating as to where it altered my life. I tested positive for babesia, rocky mt spotted fever and bartonella, and subsequent antibiotic treatment made things so bad I was unable to function.

Over the past five years, I have done everything, and most things at this point are intolerable .

Ozone, herbs, antibiotics, acupuncture, NAET, homeopathic, etc etc

I bought an IR sauna 3 years ago, have purchased enough Epsom salt to fill a swimming pool, bought a rebounder, cholestyramine, massage, etc etc

Honestly, there isn't much left to try

This is my remaining issue:

There is a lump in the preauricular area of my right ear - just in front of the ear, over the hinge in the jaw ... This lump is ground zero of my remaining symptoms ..

I have no fatigue ... no brain fog ... no gut issues ... no memory loss, no joint pain .. Those things were never part of the problem ...

The pain that resonates from the jaw and neck area near the ear is at times, unbearable ... MRIs of the jaw and panoramic x-rays show no structural problems - NO TMJ ...

I can touch the lump and feel it in my foot ... I can put a cold compress on the lump and feel sensations of cold in my thigh and foot ( where there is still pain )

There can be sensations of fluid near the lump and it is, to put it mildly, euphoric .....

ENT docs say there is no connection to the lump and the pain - which makes me want to slap them

My question to all the wonderful people here:

Does any of this ring true or make sense ???

I could probably convince one of the ENTs to surgically remove it ... in fact, a very open minded ID doc told me to have it removed, as it could be a calcified granuloma or cyst, as he called it .....

I don't know where to turn ... The symptoms are so bad that life has become a nightmare, and if you told me I'd live to be 100 but would feel this way for the remainder of that life, I lay in front of a train tomorrow ...

I know there is an answer here somewhere - no one fights like I do, but I just don't know where to turn

Thanks for listening to the ramble, and any thoughts, experiences or opinions would be GREATLY appreciated !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Hi DarcyDano - Welcome to our community!

Sorry you have been dealing with this for 5 years, with no solution to your pain!

So, it sounds like you never finished treating your infections - due to the severety of the herxes?
Did you ever have the MTHFR gene test done? Maybe the detoxing wasn't working because of your inability to detox effectively?

Were you treated by a LLMD?

If the cause of your pain in front of your ear is from a chronic lyme/bart/babs infection...I'm wondering if the only answer will be to treat the infection.

I'm sorry if I'm offending you, I don't mean to...but if it's infection related - then that would be the answer...

Girlie said...
Hi DarcyDano - Welcome to our community!

Sorry you have been dealing with this for 5 years, with no solution to your pain!

So, it sounds like you never finished treating your infections - due to the severety of the herxes?
Did you ever have the MTHFR gene test done? Maybe the detoxing wasn't working because of your inability to detox effectively?

Were you treated by a LLMD?

If the cause of your pain in front of your ear is from a chronic lyme/bart/babs infection...I'm wondering if the only answer will be to treat the infection.

I'm sorry if I'm offending you, I don't mean to...but if it's infection related - then that would be the answer...

Hi Girlie, and thanks !!

Ditto to you as to what I said to Pirouette !

Yes, a few LLMDS - the immune reactions / herx type responses have been beyond horrible . Dr R in NYC was the LLMD I saw, and he told me "If you are not dying from anaphylactic reactions, push thru the treatment" ... it was impossible, and the symptoms were beyond description.

I have A1298C MTHFR ...... I saw Dr Peta C ( MTHFR / methylation expert ) and she told me the A1298C was not part of the detox pathway - it was BH4 ..... which at the time I listened to, but however, I have since read about BH4 and it's relationship to the lymph system ..

I have been told so many conflicting things

I don't know if I have treated bartonella enough - I have had the tell-tale red scratch mark lines ... But I just cannot get rid of this lump, and the inflammatory response that seems to come from that area

I have taken it upon myself to start reading, and after the ID doc mentioned the word calcified, I have seen this more and more in regards to past parasitic infections - but while the parasites are gone and the body has calcified the areas, the inflammatory response remains

This is what has me thinking I should have the thing surgically removed

One other thing - there was a period of about 2.5 years when I didn't attempt any "killing" treatments - it was NAET, vitamins, detox etc ... and during this time, it did not get worse, or spread

I have been consistently negative on IGenex and Fry tests for 3 years now

I know there is a way out .. certain days, I feel OK - and there are periods of some days in which I feel good ....

.

.

Post Edited (DarcyDano) : 7/9/2015 10:13:20 PM (GMT-6)

Hmmm, not so many experiences with lumps, esp painful ones ?

Lots and lots of people here with lyme, etc, but if the lumps are rare, maybe I should treat it directly ..

Girlie said...
Well I have had a lump in my clavicle area and didn't know what it was until I had my first LLND appt and he said it was a swollen lymph node,

It used to hurt daily, but since treatment I only feel it every once in a while - and it hurts at that time too .

I also developed one behind my ear after treatment started and I think it was from the antibiotics "stirring things up"
It has since disappeared.

Thanks Girlie

That area around the ear and jaw is so delicate ........ I had a chiropractor tell me that the nerves that signal your adrenals and digestion run right thru that area and into c2 and c3 - so disruption there can cause chaos elsewhere .

The frustrating thing is that my dentist ( biological ), my old holistic LLMD and the ID doc all say the lump is a cyst and has gotta go one way or another ....... Then I see two ENTs and both say it can't be related to my pain ( ? ), but both went on to say that surgery would be somewhat risky because of all the nerves in that tiny area ... I finally said top the second ENT "If that area is so sensitive, how then you you tell me a lump in there isn't causing pain"

ugggggggghh

Thanks again for the response :D

Thank you Traveler !

I see that you have recovered - TWICE !

That is so inspiring, thank you thank you !!

Traveler, it might seem as if I am obsessing on one area - but really, this one area is the point of most - if not all - my symptoms .

As I mentioned - no fatigue, no brain fog or memory issues, no joint pain, no sleep issues, thyroid lab work is always perfect ( TSH, T3, T4, Free this and that , etc etc ) ... just pain - unbearable coming from that spot and radiating .

During the past 9 months, the cyst/lump has survived 15 ozone MAH, tindamax and doxy, 2 weeks of Bactrim, 4 colonics, IR sauna 3-4x per week, etc

I am wondering if something became so blocked off, and my immune system just froze it there .. there definitely feels like fluid built up around it too, as the size fluctuates constantly .

Maybe surgical removal would be the thing ?

Girlie said...
Darcy - re: obsessing - I totally understand.

My "area" is my upper left side - shoulder blade/arm/hand - the nerve pain - I'm handling the rest of my symptoms pretty well...but that ONE - is horrible.

Girlie, I can sympathize - I am sorry to hear about your pain . Believe me, I understand !

You mentioned a lump on your clavicle - is it on your left side ( where your "pain area" seems to be ) ?

DarcyDano said...
Traveler, it might seem as if I am obsessing on one area - but really, this one area is the point of most - if not all - my symptoms .

As I mentioned - no fatigue, no brain fog or memory issues, no joint pain, no sleep issues, thyroid lab work is always perfect ( TSH, T3, T4, Free this and that , etc etc ) ... just pain - unbearable coming from that spot and radiating .

During the past 9 months, the cyst/lump has survived 15 ozone MAH, tindamax and doxy, 2 weeks of Bactrim, 4 colonics, IR sauna 3-4x per week, etc

I am wondering if something became so blocked off, and my immune system just froze it there .. there definitely feels like fluid built up around it too, as the size fluctuates constantly .

Maybe surgical removal would be the thing ?

Oh no! Not at all, you asked a question and I had only one thought (LOL) of what it could be is all. I'll follow this thread with interest to see what you figure out!

I'm very sorry that I gave the impression that you were obsessing. If that's the case, I would be guilty of obsessing as well.

Girlie said...
Yes, and when my left side is really bad, the clavicle lymph node is palpable and hurts.

Lately, I seem to be getting burning down my left leg, too.

It's definitely not in the same nerve pathway...so i'm just thinking that the Lyme has been more aggressive on my left side (or bart)

Girlie, for years, I just offhandedly mentioned the lump I have to doctors - most didn't even touch it as the preauricular area is a common spot for lymph nodes - so everyone - myself included - assumed it was a lymph node .

My one time when I was at my dentist, I mentioned it, and he felt it .. He said it was a cyst . and when he put that thought in my mind, I began asking other docs to really examine it and feel it . Now, each doc is saying "cyst".

How long have you had the lump there ? From what I was told, even a lymph node can calcify . And at the suggestion of my ID doc, I did some reading and found this - not quite lyme or bartonella, but I think there are definite parallels:


www.ajnr.org/content/27/3/653.full

Active immune evasion by a living parasite has been suggested to explain why viable cystic neurocysticercosis lesions usually do not cause inflammation and are commonly asymptomatic.8,9 Parasitic death leads to a breakdown of this mechanism, leading to an inflammatory reaction

Although antigen liberation occurs during the process of parasitic dying,1 these antigens can also persist in calcified lesions. During and after cysticidal therapy of numerous viable lesions, high quantities of antigen are released by the simultaneous death of parasites, resulting in a strong immunologic activation.10 As shown in our report, calcified remnants of parasites can be targeted by this process, probably involving parasite-specific T cells and macrophages

In other words, calcified lumps ( no viable or live organisms) will still create inflammation, esp during antibiotic treatment

Post Edited By Moderator (Girlie) : 7/10/2015 11:43:36 PM (GMT-6)

Agreed about Dr Google !! .. but sometimes I just can't help it - I want to find an answer, which is not going to happen as everyone's road to what they are feeling has been different

Girlie, have you ever thought about having the lymph node biopsied ? I know anything involving surgery is not what a person wants to do, but you could get a definite answer if it was bartonella - or just a collection of immune cells

I wouldn't worry about lymphoma at this point - I think you would have know that by now, and the lump wouldn't go up and down depending on your treatment .

Girlie said...
I don't think it's lymphoma either - as I read that it would be a hard lump that was rigid and didn't move...but mine does...and like you say, it's up and down...and it's actually gotten a lot better since treatment...

No, I haven't thought to have it biopsied. I've got so much going on...and have had so much lab work done, ct's, ultrasounds, mri's, regular x-rays...been to so many Docs...that I've decided to treat lyme and co's and see what shakes out after...if anything.

All my symptoms came on so fast and suddenly - went from healthy, active to deabilitated pretty much overnight.

I'm so done with all the testing..I haven't tested for mold or heavy metals...or the MTHFR gene...if I don't see a significant improvement after I give bart treatment a shot...then I'll look further.

I'm supposed to have a colonoscopy - unrelated to lyme - because my mother died at age 55 from colon cancer...and I should have regular ones done...i have never had one done...was supposed to start at age 40...well I'm past that now.
But, having that done now...ughhh....I can't even lay on my left side...so I will have to give instructions not to move me on my left side....just not wanting to go through that now...

I am so sorry to hear about your Mom, and everything that you have been thru . We have a lot in common, as I know what it feels like to lose loved ones way too soon

And I have the same issues on my right side - I cannot imagine laying on my right side

There is a way out, I am sure ... we just need to find the correct path !

No, I haven't looked at the acupuncture meridian charts....maybe I should.
That's interesting.