posted
Has anyone been diagnosed with this? or gone down this route prior to discovering lyme?
I have a lot of symptoms similar to a fistula and am wondering if this is what I have instead of lyme or if somehow I have both.
regards, christine
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Christine,
Fistulas can be associated with bacterial infections.
Some breeds of dogs are predisposed to perianal fistulas...they're associated with a particular bacteria, but I don't remember which bacteria right now.
Maybe Merrygirl will come along and help me out on this information.
A fistula is a draining tract which forms when tissue gets an infection and drains out through the skin. Sometimes there are multiple draining tracts.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I was dx with a "most likely" fistula in both ears.
I also many other vestibular conditions that showed on tests.
At that time, the test for the fistula either was not done or they said it's more a clinical dx. and connected the dots from all the tests I had and how I'd be thrown to the ground all of the sudden (Tumarkin's phenomenon) or pulled suddenly to one side as if possessed by a ghost, it seemed.
I was scheduled for surgery, but canceled when the doctor refused to work on me due to my severe startle reactions that turned into seizures at the very slightest sound (not even noise).
This particular ENT surgeon did not believe in lyme. He was actually furious about my telling him I had just gotten 3 positive TBI tests from Igenex.
The neuro-ologist wanted to inject steroids into the inner ear put my on oral steroids for months. Uh, "no!" I said, knowing about the contraindication for steroid use with lyme. I had been on steroids a few years prior and had become horribly ill (pre-lyme tests).
That same doctor had been the same one to tell me to get tested for lyme, but with no doctor here to treat lyme, he wanted to do the best he knew how to help me. I just wish he had known more about lyme.
So I was on my own to figure it out. And I did a lousy job of it. I hope you can get better care.
Thanks to the above comment - I never knew bacteria could actually be one cause - I though it was most likely from all the falls I'd taken. If it's a different bacteria from lyme, perhaps there is a test or good treatment.
I'd still like to know.
Still, if a fistula is present, regardless of the cause, certain self-care is still required. The lying down with head elevated at 20-30 degrees still hold true for best position, less stress on ears.
Lifting anything over a certain weight or bending with head down so far is off limits until it can heal.
Be very careful with any eardrops, BTW.
For fistula repair - I was told to lie at a 30 degree angle for two months. Only get up for shower or to use the rest room.
At that time, after years of being bed-bound, I knew my body could not take any more lying around and I disregarded the importance of that advice.
I also needed to tend to myself. No one else around to cook, etc.
Oh, I didn't go running around and, in fact, did lie back most of the time. However, had I followed that advice, it may have gotten better. Though, with no lyme treatment and frequent seizures, all bets were off.
Any other angle causes much stress on the fistula and it can't heal. That was about 8 - 10 years ago. In retrospect, two months at a 30 degree angle might have helped, but without lyme treatment, I don't know if it would have been enough.
New research, new tests may be helpful. You can learn more here:
posted
really interesting... thanks for your comments... now i just have to figure out if i have a fistula or lyme or both.
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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posted
btw- keebler- can you fuction well with a fistula in both ears? or are you 24/7 dizzy? i can't image how it would be... i seem to only have it in one ear.
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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posted
i've been reading up on fistulas a bit and i do know that long term you do adjust for the dizziness... or at least a bit. they usually heal as well or at least partically but i suspect they can also open again if you really strain or injure yourself. i've spoken to a couple fistula sufferers on another message board and my symptoms do match with theirs... they are also very close to lyme symptoms.
if the hole is in the right place, it's also possible to leak CSF and cause a bunch of neuro stuff like headaches, stiff neck, head pressure etc, etc.
it's difficult to get a diagnosis but if you find the right doctor... like a Neuro-otologist or an Otolaryngolist I think you'll finally get somewhere. My friend has made it as far as seeing an otolaryngolist and is scheduled for a minor procedue where they inject blood near the suspected area and hope that the spot heals after bedrest.
maybe that's an option you can look into keebler? i know how difficult it is living like this so if it can help releave some of your symptoms it might be worth a shot.
i don't have a postive lyme test as of yet... did 2 elsias but havne't gotten an ingenix yet- our government doesn't recongize an out of country test... but i will request one with my next visit... i do suspect that i may have more vestibular issues rather than a lyme issue... i have also read you can get infections from a fistula so i think this is what happened to me.
either way, it's frustrating to say the least but hopefully i can get this option explored.
BTW- if anyone has any dizzy issues... the message board is www.dizzytimes.com and there are some really knowledgable people on there
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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xtine
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
--
xtine,
Can you get to an expert in vestibular disorders, an ENT or similar doctor?
Even if lyme might be a player, It's imperative that you have the benefit of their diagnostic screening. Once you know what the physical picture is, then you can better know options for how to proceed.
The vestibular system is extremely complex. Even an ENT would go see a specialist. They have some pretty amazing tools to diagnose and they are experts in the physical structure of this amazing system.
posted
I will look into this more... thanks. I see my LLMD in a few weeks and he's also an Internist. Since I don't have a positive test as of yet I really want to look at all options.
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Fistula....a hole basically.
If you have a hole in your eardrum it will allow bacteria/dirt etc
To go beyond the middle ear into the inner ear.
Not good since the middle ear is a breeding ground for all sorts of bad things.
The shhhhh sound you hear may be directly related to the hole.
The air passing through the hole creating this effect.
Any doc can look in your ear or nurse and see your ear drum with an otoscope.
Repair needs to be done for many reasons and this is usually
Done by an ENT. Please go have it looked at asap.
Most likely the hold is caused by repeated ear infections...
Which could be caused by Lyme.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
My luck with ENTs have been less than helpful... I plan to move up the chain a bit to see if I can find a suergon...
but i don't think this ear thing is a lyme symptom... i am starting to belive there is physical damage here.
wish me luck :-)
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hello all,
Just want to bring this topic back up to the top again. I've been dx w/Lyme clinically (no positive test). I have many symptoms of a perilymph fistula though. I don't think I only have a fistula but both Lyme and possibly also a fistula.
I was wondering if anyone else has similar symptoms to me that got better on Lyme treatment. I have pain in the hollow of the right side of the back of my neck radiating to my right ear and sinus. My right pupil also tends to be more dilated and my vision in that eye is screwy sometimes with a strange sensation in my eye. The pain also radiates down to my shoulder and back and sometimes my right arm. I also tend to get a sore throat on my right side and that gland gets swollen sometimes. I have polyps in my right sinus too. And I get a grinding/scratching sound that comes from the hollow of my neck on the right in the back when I turn my head to the left.
I also had hyper-reflexes for some time and startled easily and was bothered by busy environments such as crowds or watching amusement park rides or driving in a car with things whizzing past me. I also had some balance issues and my ear drum pulsated and I'd hear strange noises that I knew weren't really occurring.
I also recently found out I have a lesion on my right anterior frontal lobe. Anyone in the same or similar boat?
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I've been on abx for over 6 mos. A lot of symptoms have improved like most of the neuro symptoms. I wonder though if I may have compensated for the balance issues and such in other ways-like my body adjusted. I also have Mycoplasma and high EBV. I did have 2 tick bites in 2002.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
well Laura.. you know my story but for the rest of you who don't -I pretty much word for word have what Laura has in the ear and neck.
the pain doesn't radiate but i have the pain in the hollow of my neck, wooshing in my right ear, occasional ringing, attacks of disorientation, a slight muscle twinge/tremor in my neck, popping sounds coming from around the ear and head on my right (bad) side, sometimes my right eye twitches, i get headahces on the right like an ice cream headache and migraines...
my ear issues all started after I dove underwater and they got worse after i saw a chiro for an 'ear adjsutment'. she yanked on my ears until they 'popped'... afterwards i got vertigo which improved over time.
i think i've compensated for my dizziness but i think sometimes my brain is confused and when i stimulate too much or am too tired i get these 'attacks' of disoreintation.
of course, i have anxiety now and it's difficult to say what is what... lyme, vestibular, anxiety, migraines etc... all these things hit hard and at once.
it's very confusing because i relate all my issues to the swimming and chiro adjustment- so much so- that i am beginning to doubt that i do have lyme... of course it could have been lyme which infected my sinuses or created intercrainal hypertension and caused a fistula in the first place.
i just wish i could find a doctor who would know anything about it!
my neck and ear symptoms do seem worse with activity.. sometimes i wonder if this is muscular related... since nothing showed up on a MRI...
if anyone is going through anything similar I'd love to hear about it.
Posts: 127 | From Toronto, Ontario Canada | Registered: Nov 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
^
Posts: 2541 | From Northeast | Registered: Jan 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links
- especially see the VESTIBULAR DISORDERS ASSOCIATION (VEDA).
It would be best if you could see an ENT for a professional evaluation. There are many, many vestibular symptoms that resemble each other. Each requires specific tests to sort out the diagnosis.
A fistula requires specific treatment. In the meantime, resting at a 30 degree angle with head higher than legs put the inner ear in the least stressful position for rest and healing.
Be sure not to lift anything over about 5 or 10 pounds. Again, more at the VEDA site.
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