Chroic ear infection or something worse?

[Someone31415]

Since 2002 while driving sometimes I

[Someone31415]

Thank you for the responses. I'm better now, sort of. My glands are still swollen in my neck and I still feel sick all over (strangely, similar to the feeling of restless legs syndrome but all through my body), and I have crushing fatigue that comes and goes. I tried resuming athletic activity and discovered that while anaerobic activity absolutely wipes me out, I can tolerate aerobic OK but my zone 1-2 capacity is now half what it was before I got sick (literally I produce half the wattage for the same heart rate). Sometimes I have difficulty breathing which is notably exacerbated by alcohol, as I found out new year's eve and again a week later as a test. My jaw still hurts to open and close, my left ear (the one that's lost hearing and had the most pain) still feels full. I still have a "full head" feeling, sort of like "drugged up" like one of you mention. Happily, my balance and dexterity have been unaffected.

The blood tests came out negative for everything the doc tested for - I can't remember all of them. Three were notable 1. I was fully expecting lyme disease, which was negative (I believe an ELISA negative is 95% accurate). Other cell counts suggested a viral infection. Of course they can neither ID nor treat viral infections, so they say. 2. A liver enzyme was two standard deviations above normal, but with five other normal tests the doctor said it's not that uncommon. 3. My red blood cell count was 250k above normal. Perhaps it's a response to my shortness of breath? Since I

[radrhatr]

Not only does it seem to me to start with a viral infection, but an infection that affects the ear! Mine started with a respiratory virus that went into my ear this February. No ear infection, just fluid in my ear. Symptoms came on over the next 5-6 months. I have a constant all over internal trembling that won't go away. I had incredible insomnia over the summer. I have aching/pressure in my left ear/jaw, left arm, and left side of my neck. My left hand feels clumsy when I move it. I am on propranolol (left over from thyroid issues they thought I was having) which has helped my insomnia and I am also taking gabitril to help the trembling. I am left with a constant ache on the left side of my body and an internal trembling which leaves me feeling shaky all the time. My sleep patterns have been altered (although I am thankful that I AM sleeping now!) I, too, have been told that this is a post-viral condition and must wait for it to run its course. I am still searching for answers/help.

How do you search for an infectious disease specialist? Are they known by another name? Once I am there, what do I ask them for? What will they be able to do for me? I am also seeing a rheumatologist in a couple of weeks and I am going to make an appointment with an ENT. Not holding out a lot of hope for answers there, but again, this is a process of ruling out.

I also am looking into a homeopathic or a naturopathic doctor. My sister-in-law swears by them and so far, traditional medicine has not done much to help. I just am not sure how to go about finding a reputable one. Have looked on the internet, but not having much luck there.

Let me know if you get any answers that will help further. ***@****

Caroline

[jcbudny]

Bria,

Let me briefly tell you my story in the hopes that it might help you in determining what's going on in your body.  I have been to at least 15 specialist, had countless scans, probes, and even a exploratative surgery in my left ear to try and figure out what's happened to me.  I became very ill on March 9th, 2003.  I was at work eating my lunch when I suddenly became incredibly dizzy and almost passed out in my lunch.  I was pretty spooked by this, never had a sensation like that before.  It passed but 2 days later came back while I was at a friends house.  This time it didn't go away and I ended up in the emergency room.  To make the last year and a half fit into less than 100 pages I'll jump ahead to the present.  What my doctors have come up with is that I had a very bad bout with the Epstein Barr Virus.  (I was in bed for the first month with dizziness, chills, sweats, weakness, shakes, left ear pain, ringing in left ear, etc)  I have been out of work since March of 2003, I can no longer drive, and have pretty limited function due to chronic dizziness (not vertigo, I always feel like i'm drugged up), weakness, and GI disfunction.  With all the testing I've had done (tons and tons) my doctors discovered that the EP viral infection probably infected my vestibular and autonomic systems and did some nervous system damage.  Damage that can't be identified with current testing.  I have regular blood tests and they sometimes come back normal and sometimes come back with elevated wbc and liver enzymes.  All of my CT and MRI scans have been negative, my liver biopsy was negative, my left ear surgery was negative, my complete GI work up was negative, I did however test positive for EBV, my autonomic test came back with significant disfuntion, and I still of course have my chronic symptoms.  I have tried a lot of different drugs to help with the dizziness (the major factor I can't get back to my life) and none have helped.  Ever since I became ill I have had discomfort in my left ear (fullness, ringing, occasional pain) and when ever these symptoms are at their worse is when I often feel the worst.  I can go into my ENT and walk a straight line, touch my nose and toes, and do all the other tests fine, yet still feel the disorientation and drugged up dizziness felling.  I have had no hearing loss, so most of the ENT's and Oto-neurologiest I've been to are baffled.  It seems that a  lot of ppl with these mystery illnesses have one thing in common, a viral infection that sets it all off.  I'd recommend getting a complete blood work up by an infectious disease specialist.  It took me 3 of those before I found one that would work with me.  Doctors get scared of patients with these "phantom" symptoms and don't get disheartened if you get a few wierd looks.  You know your body best, as we all do.  One year before I got sick I was working as a Back Country Ranger in Alaska, spending 12 hours a day on my feet hiking the mountains of that beautiful state.  Now  I can't even drive myself to the grocery store, so no it's not all in our heads, it's just that medicine doesn't have an answer for everything yet.  I'm still waiting for my miracle doctor...  Take care and I hope things work out for you,
John

[Someone31415]

It's just getting worse and worse. I have fever, chills, feeling faint, fatigue, loss of appetite, terrible sick feeling all over, swollen glands, pain behind the ear / jaw, sharp pain in the ear itself, ringing in both ears, hearing tones in my left ear, tingling / twitching on the sides of the face, stiff / painful neck with accompanied by twitching on the forehead and headaches and inability to think strait and eye socket pain, difficulty concentrating, strange altered feeling in consciousness, STILL dizzy.

I am so sick. It's trashed my Christmas and every single day of my winter vacation. The ear doctor I went to was extremely unhelpful. He just took some wax out and shrugged his shoulders and said "I don't know anything about those symptoms".

Can they test for viral load? I think they can. Maybe I should ask for tests for borrelia antibodies and heavy metals, too.

Yeah, I think I'm going to ask for some tests even if it's just to give me peace of mind - "Yeah, you're going to get better in a week or so, no you didn't need to order these tests". I'd love to hear that.

[CaptnBill]

Hello Bria,

I have very similar symptoms. A couple of months ago I landed in the ER because I thought I was going to pass out and my heart was racing. It was the worst episode I'd had since this all started in 2000. I have had MRI's, ENG, bloodwork, neuro exams etc. All normal and therefore no diagnosis. I'd be very interested to see what your doctor comes up with. Please post again to let us know. Thanks and Good Luck! -Bill

[Someone31415]

Talked to my doctor again and I'm off to the ear specialist soon. Since I last posted I've been hearing tones and had pain and pressure below my ear / behind my jaw, and muscle twitching in my face, all mostly the left side. You'd think that more symptoms would be worse, but it gave me more to go on. I believe the dropping things was a red herring. My arms always go to sleep at night, that can affect motor function, no? Anyway in light of the new symptoms, I'm thinking it might be an infection that's irritating the nerves going to my ear and face. If my face goes numb in a few days they call that Bell's Palsy. I hope it won't come to that, even if complete recovery is the norm that's ugly as hell. I'm really looking forward to hear what the specialist says.

[CCF-Neuro-M.D.-CS]

Without examining you and asking you some questions I cannot provide a clinical diagnosis. It would be reasonable to have this evaluated. The chronic symptoms are not likely to be related to an ear infection. You should inform your doctor about the chronic and intermittent nature of your symptoms so that testing can be arranged. You may require a MRI of the brain to look for structural changes or other etiologies to explain your symptoms. Your main symptom is dizziness or vertigo, and this may require an evaluation by a ENT doctor or a oto-neurologist (dizzy doctor). Good luck.

[sportster]

Dear Bria,  First of all, calm down, becaue I too have been dizzy, nauseated, chills, etc for 8 months and yes it could take that long to have an inner ear disorder.  Check out the web site, the dizzy lounge and you will see a whole host of people with this same disorder, of course, getting things checked out by a neurologist, ent etc are going to be necessary to rule out anything more serious but the likelyhood of it being something less severe are greater than it being something more so and I pray that it isn't something worse.  Take care and I will say a prayer for you!!