Back in August my external left ear became inflamed, red and slightly swollen. Went to a GP who said Cellutis and prescribed 10 days on Biaxocin. After ten days there was no change.
Went back and got put on 5 days of Leviquin. Still no change and docs said it is not infected anymore just chondritis and will take a while to heal.
After a couple of weeks still no better so I went to an ENT who gave me a shot of Cortizone in the arm. About this time I started to develop a right eyelid twitch. After a week the ear got a little better but still not normal. This is now the beginning of October.
So, now I'm thinking polychondritis and make an appt with some rheumies out of University of Chicago. But they say not polychondritis as I have no other symptoms and think there is not enough pain or swelling to be poly.
I then went to see some derms who prescribe a topical cortizone. A little better but still not right.
The strange thing is that everyday 1-2 times a day my ear gets real warm and red for about 1-2 hours and then slowy gets better but no overall progress.
Along with my eyelid twitch I'm now getting twitches in mh legs and shoulder especially at night.
I've lost a little weight and am down to the lightest I've been since like college. Also have a little ringing in the ear and every once in the while calf pain.
And now for the real strange one. In the last couple of days I noticed a tingle/tickle on the tip of my nose when I move the tip to the side or wiggle it. All day yesterday I kept thinking I had a hair on it or something.
I remember back last summer being in the shower after a jog in the woods and found a tick embedded in my leg. I pulled it out and sent him down the drain. I monitored the area for a few days but no bullseye rash and I'm not even sure if this was a deer tick or not.
The inside of my ear is fine and I've had auditory tests which show everything is fine. This has been driving me nuts for the last 3 months. Any thoughts or help?
Robert
[ 20. November 2007, 05:20 PM: Message edited by: Robert1_1 ]
Posts: 14 | From Chicago | Registered: Nov 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
In my layman's view, a tick bite followed by neurological signs justifies a high level of suspicion for a TBD (tick borne disease). It won't take much reading here to realize that the diagnosis of Lyme is controversial and a real risk you face is of having your your windiow of opportunity for complete cure squandered by physicians who pass you around like a hot potato.
It's time for you to be pay very close attention to what physicians are doing. Some initial suggestions are: 1. See if you can get your primary care physician to order a western blot (NOT ELISA!!!) for Lyme, preferably from Igenex labs. 2. When you get your results, demand a copy. A major problem is physicians and labs using CDC epidemiolocal criteria (very strict) to rule out what is a clinical diagnosis. Given your symptoms, ANY positive bands will support the diagnosis even if your test is "negative" by CDC tracking criteria. 3. Go ahead and post in the Seeking a Doctor forum and try to get an appointment soon with a doctor who is familiar with Lyme diesease. 4. Contact your local support group for physician recommendations 5. Don't wait around on this. Time is of the essesnce.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm curious, did you feel any worse or different while you were taking the Biaxin?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
This sounds like Lyme disease. The bacteria inflame nerves and soft tissue and mess with all body systems. The rheum and derm docs do not know how to recognize and treat Lyme. And Lyme patients should not be treated with steroids.
I support what David said. I think you need to see a knowledgeable LLMD now, for testing and treatment. And you can study the symptoms and get to understand it a little more. Lots of info on lymenet.
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:I'm curious, did you feel any worse or different while you were taking the Biaxin?
Good and important question to consider!!!
It never hurts if there is suspicion to have the Western Blot done through Igenex. Even if it is to RULE OUT Lyme possibility. If it rules it in even, atleast you will know and can get started on what you need to!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Thanks all for the replies. At the time I was taking the Biaxin, the only symptom I had was the inflamed ear. And no it did not help with that.
Other than that I felt fine.
By the time I saw the ENT I was starting to feel a lot of anxiety because I was thinking that maybe I had Polychondritis. So, in the back of my mind I think I keep telling myself maybe some of these symptoms I'm having now are stress related.
I also have a slight ringing in the ear and had night sweats a couple of times. All of theses things I think are not abnormal for me on occassion (except the ear and nose tingling) But now all at once.
I've hit nothing but dead ends with other docs on what is going on with my ear. My GP actually had the nerve to tell me that it may be something I need to live with and maybe psychological support might help. I think a good lyme doctor is in order for me for an evaluation.
I've sent an email to the forest preserve person knowledgable about tick/lyme status in the area where I run and picked up the one tick. Hopefully they get back to me soon.
Posts: 14 | From Chicago | Registered: Nov 2007
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posted
If the ear inflammation was due to lyme, would the 10 days of biaxin have cleared it up?
Posts: 14 | From Chicago | Registered: Nov 2007
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posted
Post under Seeking a Doctor for a dr in your area.
Is there a support group for Chicago area??? I dont know someone might!]
Robert, again, it never hurts to run the test as a rule in or out. In the mean time, a LLMD is a good doctor no matter what and they can help you even if it isnt Lyme. Mainly because they are like detectives. It isnt a 10 minute visit with them, your intial visit will be several hours!
They take the time to listen and wont jump to antidepressants and psychological help required! If nothing else, you can get on a directive for answers! They generally do care!
I wish you the best of luck! Keep us posted, K!?
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Robert1_1: If the ear inflammation was due to lyme, would the 10 days of biaxin have cleared it up?
No, even if you caught the Lyme right away after a bite, it takes more like 30 days. Typically the first choice abx is Doxycycline or Amoxicillin.
It would be good for you to get tested now because if it is Lyme, you will want to start treatment as soon as you can so it doesn't get worse and harder to treat.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I have a question about Robert mentioning night sweats. Can that be due to Lyme, or would it indicate a coinfection like babesia, which causes night sweats?
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robert1_1: 1. After a couple of weeks still no better so I went to an ENT who gave me a shot of Cortizone in the arm. About this time I started to develop a right eyelid twitch. ................
2. I remember back last summer being in the shower after a jog in the woods and found a tick embedded in my leg. I pulled it out and sent him down the drain. I monitored the area for a few days but no bullseye rash and I'm not even sure if this was a deer tick or not.
Both of these items are very worrisome. Steroids will make the Lyme go deeper and often bring out more symptoms because of that.
Doesn't matter if it's a deer tick or not....contrary to what you've probably read.
Doesn't matter if you had a bullseye rash or not...contrary to what you've probably read.
Many here who are chronic are chronic because of not having the benefit of a rash. It may have kept us from being properly diagnosed.
Robin...yes, night sweats can indicate babesia. Robert...babesia needs different meds in case you do have that you will need a dr who knows how to treat it.
I did send you info on drs in your area.
Please get tested with a Western Blot through Igenex Lab in CA.
David gave an excellent response. Ditto what he said.
If you look at the definition of cellulitis, it is inflammation caused by bacteria that has gotten under the skin. From injury, surgery, a scratch, or insect bite.
Perhaps you were bit again behind your ear or at the hair line. (one of the favorite spots for ticks)
The redness, heat and inflmation could be a a-typical bull's eye...... and ask here.... most peoples' rashes were NOT typical if they had a rash at all.
The tick that bit me was as small as a grain of salt. Just a tiny black dot in my thigh. It was completely embedded, nearly flush.
I didn't see any legs, and there was just a small amount of redness around it. At the time I thought something had bit me and the black spot was a scab. I scratched it out.
Over the next several days the rash grew to about 6 inches in diameter. And within 2 weeks it was gone.
EXCEPT: whenever I took a hot bath or shower, the six inch siloutte would be visible for 20 minutes or so.
Posts: 258 | From Washington State | Registered: Nov 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Robert- it COULD be- it could NOT be. I WOULD see an LLMD. It definitely COULD be.
You do sound very typically Lymie. Sincerely, Sarah
-------------------- 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
Ringing in the ear(s), eye twitch, tingle on the nose, leg pain...very Lyme like. I've had all of these things.
Top of my nose gets numb; I've that same feeling of a hair on my forehead yet nothing is there.
You definitely need to pursue this with an IGeneX Western Blot and ideally co-infection testing!!
Great that you are keeping track of your symptoms (new and old). I always recommend keeping a journal.
I find everyday is different with Lyme -- but all the symptoms add up and are clues to what's going on. And if it's not Lyme, it's still a great idea to track what's going on of course!
Days and symptoms blur together so jot them down! Your doctors will find it helpful, too.
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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daise
Unregistered
posted
Hi David.
This is a good thread. It is wonderful that you are keeping track of signs and symptoms, like a detective.
I'm no doc, but here goes ...
Lyme often starts with a fever--low grade. But I didn't have a fever and some others didn't either.
Ear: inflammation. It feels hot = infection.
You have something progressive going on because it's gone body-wide. Eyelid twitching, calf, legs and shoulder: neurological. You are a candidate for Lyme.
Ringing in the ears--with your other signs and symptoms = most likely metabolic mayhem (infections, hormones and co-factors out of whack.)
In Chicago, if it's embedded, what could it be? Tick or chigger. Are chiggers that far north? Chiggers are big. Not the size of a poppyseed nymph tick. The type of tick doesn't matter--that's for the biologists to figure-out.
In my book, as a patient, a tick is a tick. They've been known for who knows how many millenia as bringing illness.
Not everyone gets a bulls-eye rash. It's around half of adults and only 10% of children ever get the rash.
IGENEX, yes, but here's where I differ from some of the others: strategy. If it does not show Lyme (that's true for many, including me!) then you are stuck.
If you have an LLMD calling the shots, you'll likely get an order for IGENEX and if it's negative you'll still have the LLMD's authority to clinically diagnose you, if they deem you have it.
With no LLMD you're insurance company may very well say, well, the blood test was negative, so why pursue it--and you may be stuck. Happens all the time. Some insurance companies don't pay for extensive Lyme treatment, and you'll need some. But not like nearly all of us! We've gone years or decades, undiagnosed. Or insurance wouldn't pay for treatment.
Infectious disease docs are allergic to us, and we to them, due to their organization, IDSA: IDSA is the enemy. They say only 2 or maybe 3 weeks of doxy and after that, any symptoms and it's all in your head. You know what that means!
David started you out well.
You must be just past 3 months, now. Up to 3 months of symptoms and it is called "early Lyme" and is usually treatable with doxycycline, for adults, for 6 weeks.
No steroids at all, unless they are bioidentical steroids (natural steroids that your body is low on) that you have been found to need by testing. Any meds, ask if it's a steroid. Ask a pharmacist, too.
You may hear about the CD57 test, however it's way too soon for that.
A doc pegged you as psychological. Oh. Then you must have Lyme, welcome to the club of people with all sorts of doc responses. (Just kidding. But our stories are real about docs putting us off, saying we need antidepressants, etc.)
GET 6 WEEKS OF DOXYCYCLINE ANY WAY YOU CAN. Get creative. Go from emergency room to emergency room. Beg and plea with a doc for it. Then try another doc, not with your insurance for another prescription. Try a nurse practitioner in private practice. Does it add-up to 6 weeks worth? Buy online. Go to a Mexico border city.
Since you are past early Lyme, you'll likely need another antibiotic ... but see an LLMD for that.
Some LLMD's consult by phone, when the insurance company wants it. That's how I got diagnosed--clinically! I got a nurse case manager with the insurance company who arranged testing, LLMD phone conferences and a lot of things. She asked what doc I wanted.
Night sweats could be Babesiosis. Keep that in mind, please. In other words, if you are going to have a western blot test for Lyme, then I'd suggest western blot for babesiosis, too.
Book: Coping With Lyme Disease, by Denise Lang. Is it at the library?
Online: www.ILADS.org, especially "Treatment Guidelines."
There are fake Lyme doctors and there are real Lyme doctors.
Untreated or improperly treated, Lyme becomes a train wreck.
The tick that was in my leg, I remember was one of the bigger ones, Definitely bigger than a pin head. I could actually see the legs. Not sure if that is a lyme carrying tick or not.
Posts: 14 | From Chicago | Registered: Nov 2007
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When you say 6 weeks of doxycycline, what is the actually dosage and how many times per day. I'm sure it would be easy to get on an on-line pharmacy. Is there any negative side to just taking it?
As far as the Igenx test. If that shows up negative, how does one go about confirming whether they have lyme or not. I have another question about the igenx test but will post in a new thread.
Posts: 14 | From Chicago | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The usual dosage for Doxy is somewhere between 200 mg a day to 400 mg a day. I was 112 pounds and was at 400 mg a day. Some doctors use less. You take it twice a day either 100 mg twice a day or 200 mg twice a day.
It is always best to work with a doctor and you can probably find one in your area by going to the Seeking Doctors column here and asking!!!
Doxy will chelate with milk/dairy so you need to take it without milk products otherwise it will be less effective. Doxy will make most people very sun sensitive and you can burn easily-
It can also make some people really nausea even to the point of vomiting- taking it with starchy food (oatmeal, carb-y food) can help!!!!
If you do have Lyme or TBDs you may Herx which is when you get worse before you get better!! it is taken as confirmation of infection by some docs!!! Best wishes, Sarah
-------------------- 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
To help you get rid of it NOW, I would personally take 200mg twice a day for at least 6 wks. The lyme spirochetes replicate every 3-5 wks and you want to be covered then....that's for sure!!
You've already been having symptoms, so I would ASSUME the tick was carrying SOMETHING. Don't ignore it!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i agree. its most likely lyme.
but, keep this in mind.
your sudden onset of sx as well as the marked inner ear LEFT sided pain along with anxiety is almost the exact same symptom onset as i myself experieced.
be forewarned, you probably have a lot more to deal with than just lyme disease.
"co" infections as they are so delicately called, are actually more deadly than the lyme bacteria itself.
you could have lyme and some "cos", or, you could have none of them.
the point is to get to a llmd, get tested, and get on treatment.
abx are not going to ruin your life.
lyme and tbds will
imho it sounds like you have bartonella along with lyme. i would ask for more levaquin, possibly rifampin, and doxy 400-600 mg to start
a llmd who is well versed in these dieases will be better suited to guide you.
best of luck, if you need further assistance, please pm me.
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
It sounds like it could be Lyme-related, but coinfections are often involved (babesia, bartonella, ehrlichia), so it is often hard to tell which bug is causing which symptom. You need to find an LLMD.
I'm concerned though that your symptoms started with ear troubles. Do you happen to use a cell phone and/or cordless phone? I didn't have any problems with the outside of my ears, but I did burst my left eardrum, and I hold the phone to my left ear.
Check this out to see if this might be a co-culprit:
posted
This happens to be my left ear which is NOT the ear I use for both cell and cordless phone.
And just to clarify, I have no inner ear issues. It is only the external ear which is red and slightly swollen. There is really no more pain.
This is why my first thoughts were polychondritis.
Since my initial post I've looked at some of the red ear pictures associated with lyme and they seem to look a little different. Fpr instance the ear lobe seems to be effected as well. In my case it was mostly the upper part of the ear and the part just outside the ear canal
These past 3 months have been so exhausting trying to get to the bottom of this.
Posts: 14 | From Chicago | Registered: Nov 2007
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posted
Robert, You've been given great information. ******************************************** Lyme disease is called the "Great Imitator" because it can mimic many other diseases, which makes diagnosis difficult. A rash can appear several days after infection, or not at all. It can last a few hours or up to several weeks. The rash can be very small or very large (up to twelve inches across). A "bullseye" rash is the hallmark of LD. It is a round ring with central clearing. Unfortunately, this is not the only rash associated with Lyme. Various other rashes associated with LD have been reported. One bite can cause multiple rashes. The rash can mimic such skin problems as hives, eczema, sunburn, poison ivy, flea bites, etc. The rash can itch or feel HOT or may not be felt at all. The rash can disappear and return several weeks later. ********************************************** I'm popping in here late, but when reading of the ear-ringing and night sweats, Babesia was the first thought I had. Babesia is a co-infection of lyme disease.
It's rare to have lyme disease without a co-infection....but it can happen.
Any tick can give you LD and some have reported possible infection from other insects. The tick that bit me is commonly called a "dog" tick, or a larger tick, not a deer tick at all--I had no rash.
If you found one tick on you, it is possible that you could have been bitten by another....perhaps on your ear?
I hope you'll contact that LLMD and get on the road to getting better soon. In this case the faster you do so, the sooner you'll get treatment if need be.
posted
I am herxing for Babesia, "Babs", right now. I'm new to this myself. But my left ear has been red and inflammed every time I take my meds?? I also have most, if not all, of the symptoms you described. I would get it checked out.
Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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posted
I am herxing for Babesia, "Babs", right now. I'm new to this myself. But my left ear has been red and inflammed every time I take my meds?? I also have most, if not all, of the symptoms you described. I would get it checked out.
Posts: 38 | From Lincoln, CA | Registered: Nov 2007
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