posted
Hi everyone, I need your experiences here to here to help me figure out what's going on. I have been suffering from either a relapse of Lyme (initial bite 1987, four major relapses since) or a new infection since March 2011 with no treatment.
Anyway, for the past four or five months I have been having this odd problem with my left ear. It would feel clogged and I would have difficulty hearing out of it. I went to an ENT in April and he told me I had TMJ. Ok, that's possible I thought and it did go away. But then it came back. And then it would go away again. And come back The last time it came back it had a little twist to it - there was a strange reverberation to the sounds almost an echo like effect coming in that ear
This last time it came back on Saturday, suddenly and with a vengeance. I couldn't hear anything out of that ear, no dial tone from a phone and now there is a rushing sound all the time as if I am listening to running water or have a seashell over my ear.
So I went back to the ENT on Tuesday when I saw it was just getting worse. After doing a hearing test he told me I had severe hearing loss in that ear and that it was urgent I start taking steroids (ah the dreaded steroids for Lyme patients) and an antiviral med. immediately!!
I asked the ENT (with trepidation) if it could be Lyme (I am all too aware of most doctors reaction to the "L" word. To my surprise he said yes. He was very supportive and when I mentioned my allergy to rocephin he told me that the steroids, tho I wouldn't be on them long would protect me from the allergy. He told me to seek treatment for the lyme asap I spoke to my LLMD and he did not like the steroids at all, but agreed that it had to be done to bring down the inflammation in my ear. He also agreed to restart the rocephin.
So here I am, on prednisone since wednesday, an antiviral for the ear problem in case it's a viral infection, and I began rocephin for the Lyme yesterday, low dose for now. So far so good The antiviral is rather unpleasant and I was going to drop it but I was told that to start and stop would create a resistant bug.
My question is, after all that, has anyone had a similar problem with their ears? How did you treat it? Did it get better? If so, was it attributable to Lyme? Could this be Lyme-related?
Posts: 97 | From New York | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Indeed, please STOP THE STEROIDS (tapering down, not abruptly)
(Although glad to see you are on IV Rocephin, too, but a "low dose" will not adequately protect against steroids)
They can cause so much damage for a long time and make lyme very hard to treat.
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
=================
TMJ? Yes, Lyme and other tick-borne infections can CAUSE that, too. Some of the posts in the thread above discuss that, too.
MAGNESIUM DEFICIENCY can CAUSE TMJ. More detail about magnesium in the link above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Lyme1987 - I have had very similar symptoms and I am still searching for answers. Sudden, severe hearing loss in one ear followed by roaring tinnitus was one of my first symptoms of Lyme. My LLMD thinks I contracted 5 yrs before due to my history (yrs of migrating joint pain and summer flu with a few untreated tick bites in past)
I responded well to anti viral and lysine, but never got my full hearing back. I have been on ABX since Nov 2011. Recently, my hearing in bad ear worsened to almost total deafness following new ABX and exposure to loud music at my daughter's wedding.
Since this time, I have had much worse tinnitus and changes in ear pressure with seashell and motor sounds with chimes and all kinds of hums and tones. It is a regular symphony in there.
My LLNP wants to start me on IV ABX soon. I am in Canada vacationing now, but pray the Iv ABX will make a difference. Please PM me to discuss in more detail. I have written a lot about my auditory symptoms on Lymenet.
I also did take a taper of prednisone after initial hearing loss. Even me ENT did not think it would be a good idea for me this time now that we know I have Lyme.
Good luck to you. Please keep me posted. We need all the success stories we can find To keep hope alive - as it is devastating to lose your hearing and worse to be plagued by horrible tinnitus.
Posts: 2386 | From New England | Registered: Aug 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I was wondering what your allergic reaction was to rocephin. I just had a blood test confirming my allergies to cephalosporins which has shut out alot of options for me.
I did not realize that you could still safely take it with the addition of steroids.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
I believe that a problem with my right ear was my first really blatant symptom of lyme. When I would get up in the night to use the bathroom, I would swerve to the right and stagger my way in.
I've just finished a protocol for babesia and bartonella. My ear has been ringing for some time but not badly and now it is back to significantly increased ear pressure, ringing, balance issues, stiffness in the neck and right shoulder.
Apparently the unilateral ear thing is a lyme symptom rather than a coinfection. I'm hoping that means that bab and bart are gone and now lyme is taking over. At least something would be gone.
This morning I started taking some gingko which is known to be good for ears. I've heard that the liver and ears are connected. Keebler, is there a particular berberine with herbs that you recommend?
Posts: 705 | From WA state | Registered: Jul 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 3/4 of the way down, see detail about liver support - and ear support posts are peppered throughout:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
= = = = = = = = = = = = = = = = = = = = = = = =
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients,
LOW HEAT INFRARED SAUNA detail,
BIONIC 880 (& PE-1) links, and
RIFE links. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I had ear problems from the very beginning. I was originally on a steroidal nasal spray to decrease the swelling in there. My sinuses also were stuffed, painful ect... This has increased/returned since starting Babesia meds again...Was non existent until this.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I also have significant hearing loss that began after becoming ill . I wear a hearing aid . Three years of ABX did little good and I do not have insurance or the guts or kidneys to live indefinitely on the ABX anyway .
I blame lyme for hearing loss and doctor agreed it was likely .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Jamers, I am now wondering if the babs treatment is a link. I also stopped Zithromax because I read how it can wreak havoc on already fragile ears. Are you still on babs ABX? Have you ever tried IV ABX or bicillen shots?
I know there are people who have had hearing loss and tinnitus that gradually improved with treatment.The weather anchor person who appeared on Dr. Phil was one of them. I hope we can hear from some of them for hope and information about what helped them.
Posts: 2386 | From New England | Registered: Aug 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Dpei- I'm still on babs meds. My ears are full of pressure, crackling and sometimes ringing and hearing goes out for a little bit.. Sounds like I'm in a tin can. I haven't done IV only oral meds.
My ear symptoms went completely away on Bart treatment only to return when I started babs treatment. So I'm assuming it's a babs symptom that is resurfacing.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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lymeboy
Unregistered
posted
Ear pressure was my first symptom, and it has not gone away, only gotten worse with treatment. My ears just will not stop bothering me. I have had hearing loss.
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posted
My first symptoms were ear, tooth and jaw pain - stabbing pain, and fullness in my right ear. It's returned during treatment. Lots and lots of crackling too. Of course no one knew it was lyme three years ago:(
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Jamers, my ear symptoms definitely worsened when starting babs treatment and dropping bartonella tx but I stopped feeling so sick and flu like. I worry that the auditory symptoms are worsening because I am no longer being treated for bartonella. But, I suppose this could all be herx related due to babs treatment getting things stirred up.
The tinnitus and strange sound distortions have been fluctuating more and I am afraid the hearing loss is going to be permanent. My voice and others sound muffled and as though under water or tinny. But there are now some better periods, where voices sound closer to normal.
Since on babs tx but my head is often buzzing away with all sorts of strange sensations. My mood has been sad some days but I feel better physically (energy and stamina better with only mild joint pain )
It seems that Lyme, Bart and babs can all infect the auditory canal. Maybe other confections as well. Hopefully when some of the inflammation dies down, things might get better.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Well everyone it's been three weeks and my ear has gotten cosiderably worse. The 9 day regimen of steroids did NOTHING for my ear problem. The antivirals I took for 10 days did nothing either. The only, and I mean only good thing that came out of taking the steroids is that I was able to restart IV rocephin without an allergic reaction.
I am still only on 1/4 dose of the rocephin as my LLMD wants to take it slow and hopefully desensitize my body to it.
I have been back to the ENT, had another hearing test just.this past Wednesday and my hearing is much worse. The ENT wants me to now get an MRI to rule out pathology.
Of course now I am a little freaked out by that but on the other hand I know that I should probably get it done just in case. The thing that concerns me is now, in addition to the loss of hearing, The rushing noise I hear, and extreme sensitivity to louder sounds, I am now having intermittent sharp pains in front of my ear, in my temple next to that ear and even up to my forehead on that side.
Also, there is this very weird sensation at times of something moving in the ear and I since yesterday i have this same sensation just in front of the ear as welI. I guess the closest I can get to describing it is it could feel like a muscle would if the muscle could twist and turn.
Has anyone ever had anything like this? This is so awful. I feel like my head is enclosed in a tin can and the lack of hearing is making me feel so disconnected. And to top it all off, I have been getting dizzy spells that last several hours before they go away. That has been happening since last Friday. Not vertigo, but dizziness and loss of balance.
Help!
Posts: 97 | From New York | Registered: Dec 2011
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posted
I haven't been to this forum for a long time, but I just stopped by and saw your post. Yes, I have the problems you describe. I became sick with what is presumed to be Chronic Fatigue and Immune Dysfunction Syndrome (aka M.E.) after an intestinal virus (again presumed) that rapidly made its way into my CNS about 14 years ago. The hearing problems came 9 years later. I was never treated, no abx, nothing. So I know the ear issues are not related to medication. Over a period of a few months I became aware that my hearing in the Left ear was muffled. I thought it was ear wax, and I used drops to soften it and tried to flush the ear but nothing came out and hearing didn't change. Then, one day while sitting on the sofa, loud tinnitus just started. Like cicadas or high pitched ringing. When it didn't go away by the second day, I made an appt with an ENT. Hearing test showed severe hearing loss in L ear and normal hearing in R ear. That night I had my first and only severe dizzy spell. I felt nauseated and could not stand, so I just went to bed. It was gone by morning. Within the next few weeks, my hearing seemed to improve in the L ear, but the R ear seemed to be going down. All this hapened in a short period of time. When I went back a year later and had hearing tested, the L ear had improved but sure enough the R ear had lost significant hearing. I still have occasional fluctuations but mostly they both have the same level of hearing loss now. I do have sharp stabbing pain deep in the ears and sometimes on the outide around them. I think it might be muscle spasms, but I'm not sure. One night when my immune sytem was fighting something off, I went nearly completely deaf. Hearing came back by morning. For me, fluctuations and pain seem to occur relative to immune function and if I am having a "flare" or dealing with a presumed virus.
I had some ear infections as a child, so I suspect my ears have always been a vulnerable area. Whether virally induced or bacterially induced, if your ears are a weak spot, you are more likely to have ear problems. That's my thinking anyway. I have never had steroids, and I am chemically sensitive, so I can't take much, including most antibiotics. Keep in mind that there is a whole long list of meds that can cause tinnitus and damage to the ears, many of them antibiotics commonly used by Lyme doctors in treating Lyme.
It's been over 5 years since my hearing loss and tinnitus started. I have occasional episodes where in addition to the tinnitus I get this hollow drone sound and my head feels like it's in a vise. It is truly awful, and if that is similar to what you are describing, I totally feel your distress. One thing you could try is Mucinex. The 12-hour kind is good. It will thin mucus and help things drain if there is congestion (even if there doesn't seem to be any mucus at all). That has helped me. Push fluids and stay indoors with the a/c to filter outside air. If these measures do not produce results, ask your doctor if an antihistamine is okay with the antibiotic you are taking.
Definitely get the MRI. Mine was normal, no tumor, but you never know.
Allergies are always a possible contributing factor. I find food yeast and mold in general to be a problem. I hope you find some relief!
Posts: 277 | From Pennsylvania | Registered: Apr 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i didnt answer you last time. my brother has very similar sx and keeps going to regular doc and ent and getting what i think is run-a-round
i believe my briother has lyme but he is in denail...so thats the end of that
i suspect it is lyme...i myself have the sharp pains intermittenly and feel they are like my tri-gem-neuralgia...
HOWEVER...your description of the muscle twisting made me think...and this really isnt all that crazy...that it could be a worm.
if you google brain surgery worm-or search on here you will find a video of a doc planning to remove a cyst or something and it turned out to be a live worm in the woamns brain
i often have the sensation in my abdomen of a baby rooling over or kicking and i cant help but think it is a worm.
i believe the lyme related ear problems come from inflam near the nerve that goes from spine to ear...but i wouldnt rule out worms...search on here...they are everywhere
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am really sorry for what you are going through. It is devastating to lose your hearing and balance (I have lost both), while also experiencing all of these strange symptoms that don't seem to fit with auditory illnesses. It sounds like Lyme has found its way back into your body.
I have had many of the symptoms you describe. In fact, recently, since adding biaxin to the mepron and omnicef (babs treatment) I have been taking, I have had sensations of buzzing, vibrating, and crawling insects (I hope not a worm!) inside my head and especially near the surface. The left side near the ear with hearing loss is where most of this is.
I am now wondering if babs is what caused my hearing loss. I have also had some stabbing pain in certain parts of my head, especially near the bone behind my ears.
The sensitivity to sound comes along with hearing loss and can also be a symptom of lyme. If caused by hearing loss, it should improve over time after your brain has adjusted to the hearing loss. It is caused by the nerve cells that are still good, attempting to do the job of the dead cells.
A few weeks after my recent hearing loss, my voice sounded amplified and like I was under water when I talked. Other people's voices sounded all distorted. That has improved. My hearing is still poor in my left ear, but it seems to be getting better in that sound is less distorted. I hope that lyme treatment will help you to turn some of this around. Keep us posted.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thank you for your responses. The ENT does feel that all this could be Lyme related but as I mentioned, wants me to have an MRI to check for pathology.
The other thing I forgot to mention is that there is no pressure in that ear yet the ent could not see any hole on my eardrum. He said there could be a pinhole he cannot see but I really dont understand how that could have happened.
Posts: 97 | From New York | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Unless that ENT is ILADS-educated and extremely lyme literate AND TBD literate, he cannot know that this is not due to lyme or other tick-borne disease.
That they gave you 9 days of steroids shows they are not LL. I hope your LLMD was able to have you on abx during that time.
The sort dose of antivirals won't do much against some of the stealth viruses. See the "What Else?" link below.
True, this could be something besides lyme or TBD but if a specialist is not LL, IMO, they are just not good enough for someone who has lyme/TBD.
As for the MRI, that is not the best test to look at the structure of the ear canal bones. A very specific CT scan is and not all CT machines can even do the correct test.
An MRI can miss a lot regarding the ears, a lot.
You may want to refer to the SCD links in the Tinnitus thread above and check out their site for test specifics. Or Google: SCD Support, Links, CT
You should be assessed for SCD since you say " . . .feel like my head is enclosed in a tin can and the lack of hearing is making me feel so disconnected." (end quote)
Not all ENT or even neurotologists KNOW about SCD, though. More detail in the Tinnitus thread.
Be aware: an MRI can cause hearing damage, especially when on certain antibiotics or other ototoxic drugs (and especially if liver support is not tip top).
If you have an MRI, beforehand, refer to the safety precautions in the Tinnitus thread. You would need to be sure the facility has special protective MUFFS that are MRI safe.
Ear plugs are not enough protection but, IMO, neither are the muffs for someone who already had ear trouble. The MRI vibration travels through bone, and through our nasal passages, too.
I hope you can avoid an MRI for the rest of your life. IMO, again, they can cause great harm to ears that may not show up right away. And the just can't tell us much about the ears, anyway.
As for treatment that will work, you might consider a RIFE machine if Rx is too challenging.
Whatever, though, be sure to keep up with liver support. It's vital for the ears, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions - that can hold us back are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, the ENT is not Lyme literate, just Lyme-friendly, which is about as good as it gets in my location. And he seems to be ordering the MRI not so much to look at the ear bones but to look for growths or tumors. I would think he would want to see the ear bones first. I will ask my LLMD about this.
From what you tell me about the MRIs and potential to harm the ears it seems like this is not such a good idea and maybe he should be ruling out other possibilities first. I'm really glad you told me this about the MRI. Thank you for the links also. I never knew about SCD.
By the way, my LLMD was not happy at all about the steroids, and yes, I was on 1/4 dose rocephin during that time.
Posts: 97 | From New York | Registered: Dec 2011
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posted
Looking for some help/relief for intense ear pressure experienced recently with reduction in hearing. Winding down with prednisone that ENT put me on to address inflammation. Lyme MD checking for possible lyme link since i've been treating this for years. MRI is negative. Any suggestion for supplements while tests are being done?
Posts: 6 | From east coast | Registered: Aug 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
bmehler, I would stop the prednisone if you suspect you might have lyme disease. Please refer to the symptoms in the website below...
Note that the majority of those stricken with lyme disease NEVER get a rash when infected by a tick.
MRI's are not a good way to detect lyme disease. The Elisa test is useless and the Western Blot misses many cases if you have had lyme in your system for some time. You need a clinical diagnosis based on your history and symptoms. See
My ENT prescribed prednisone for me to get the inflammation down when I had sudden hearing loss and it only made things worse. Steroids shut down your immune system and allow the lyme bacteria to multiply.
We did not know that lyme disease was the cause of my hearing loss at the time. (I had tested negative on Western Blot)
If you suspect lyme disease, I would try to find a good LLMD (lyme literate MD) ASAP. To find one in your area, you can search on this site under "Seeking A Doctor" - post a question providing your area.
While you are waiting for your appointment, try to take banderol and samento (two herbs that have been shown to zap all 3 forms of lyme bacteria). Below is a good resource
You might have luck in a local herb farm or healthfood store as well.
Other things that might help you are lysine (supplement) and a prescription drug called Valtrex, which is actually an anti-viral used to treat Herpes. For some with sudden hearing loss, this combo has helped to reverse some of the hearing loss. It definitely helped mine initially.
Grapefruit seed extract and olive leaf extract have also been shown to help. Feel free to private message me if you want more help.
Posts: 2386 | From New England | Registered: Aug 2011
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