posted
My LLMD pulses. At the end of the cycle I take 2 days of flagyl. 5 days after the flagyl I had a sudden loss of hearing and ringing in my right ear. This is the 10th day of it and it doesn't seem to be improving.
It occurred when I wasn't taking any abx. I am taking a lot of supplements but I don't think any of them are causing it.
Went to a primary care doctor and ear looks fine. She suspects sinus's and gave flonase.
The abx I am on are rifabutin, onmicef, and mino with flagyl added at the end.
Maybe the mino? I have had no ringing ear issues in over a year though and it is weird that it occurred all at once.
[ 11-16-2012, 04:21 PM: Message edited by: terv ]
Posts: 832 | From Somewhere | Registered: Nov 2010
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gmb
Unregistered
posted
Not to sound discouraging...
My left ear went deaf suddenly while on vaca on the Cape Cod back in '91. It started out ringing while at diner one night, then vertigo kicked in, and I woke up deaf. It's been ringing since.
Went to several specialists and was diagnosed with a dead chochlia, possibly from some unknown virus. The docs told me to avoid heavy-duty ABX, shooting guns, and fireworks that would damage my one good ear
I got Lyme in 2005 and didn't get diagnosed and in treatment until 2010. I often think the possibility that I may have been bit by a tick at the Cape back in 1991, and the next bite in 2005 pushed me over the edge.
I know there are others with lyme who post here that have hearing loss with tinitus.
I recommend that you see a good ENT specialist, unless others here think your hearing loss should return to normal.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Definitely see an ENT. Have you been exposed to any loud music or noises recently? The combination of 'ototoxic' ABX (these can cause damage to the ears) and loud noise can be lethal. Unfortunately, the treatment for sudden hearing loss is often a taper of prednisone. If you have lyme, this may not be a good idea.
I have found that taking Valtrex and lysine have helped to stabilize some of my hearing loss and tinnitus in the past. They may be protective of the auditory and vestibular system - and they fight herpes, which can wreak havoc on both.
Often, when you initially lose hearing, the tinnitus is at its worst. Mine always seemed to improve somewhat over time.
After treating with various ABX for a year, I am now trying the herbal root. It has been almost 3 weeks and I think the tinnitus might be a tad better. I don't want to jinx by making the statement!
Feel free to PM me any time and I will be happy to provide more information. Good luck.
Posts: 2386 | From New England | Registered: Aug 2011
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Keep the bad news coming... Encouraging me to go to an ENT and deal with the whole Lyme explanation on why I am on long-term abx
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poppy
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posted
My visit to an ENT was like all the other specialists. Didn't help, didn't have a clue about lyme. He discovered that I had lost some low and high tones in my hearing, but I already knew that.
My tinnitus started after the tickbite, before the abx. And has continued ever since then.
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posted
I made an appt with the ENT who ran every possible hearing/inner ear test for me before I was diagnosed with Lyme. Have to see the NP but they assure me that she will test me the same as the MD. This is on Monday
Luckily I have an appt with LLMD for the same afternoon so I can review with him any prescriptions/diagnosis. The LLMD's triage dept is blaming this on a flagyl herx.
Posts: 832 | From Somewhere | Registered: Nov 2010
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After 10 days of the hearing loss, vertigo struck this afternoon. I had my husband do the epley manuever which seemed to help as long as I don't move my head.
it is going to be a long weekend.
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dbpei
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posted
Hope things get better. This stuff is no fun. It sounds like your 8th cranial nerve is inflamed from lyme and co. Hopefully, when the inflammation goes down, so will your symptoms.
Magnesium is really good for protecting your ears from further damage.
Posts: 2386 | From New England | Registered: Aug 2011
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TF
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posted
In case you didn't know, flonase is a steroid.
I was given this years after I got rid of lyme. I was told to use it daily. After 3 months of it, I was catching every illness that came down the pike.
Look it up on the net and you will see that it weakens your immune system and makes you more susceptible to infection. Other warnings are to stay away from sick people while taking it.
So, I advise you not to use the flonase. I stopped it and won't ever use it again.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Ellen101
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Yes, flonase is a steroid, but all steroids are not the same. There is a huge difference between a medication like flonase and prednisone.
To advise people not to take any steroids at all is not right and for some could be dangerous. I know when I first came on here there were people saying not to use advair as it is a steroid as well. For those of us with asthma to go without our inhalers could be deadly.
I checked with my LLNP and she said to absolutely continue using it. 2 of my kids have used flonase for allergies for a long time and have had no problems whatsoever on it.
If you are concerned about using a particular med check with your LLMD.
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randibear
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posted
i was at mom's house after the bite and the doctor put me on doxy. i remember distinctly standing at the kitchen sink and then wham!! my ears felt like they were bursting and started ringing something awful.
been doing it since and that's been at least 5 years or more. nothing stops it, nothing...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
The flonase was just a sample and only intended to see if it helped and to get me to my LLMD appt on monday.
I agree with you Ellen. My mother who has asthma from lyme got so paranoid from this site about her asthma steroids. She had a major attack a month ago which landed her in the hospital for a week. She was told her lungs are at 20% and they don't know why she is still alive.
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momlyme
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posted
My daughter's asthma completely went away when we discovered we had toxic mold behind the walls of our tub. It was hidden. You couldn't see it or smell it... by the time we discovered it, we were all very sick.
My son and I both tested positive for Lyme... we are both 100% well. We have been out of the moldy house for 20 months. He got well in 4 1/2 months. It took me 18 months. We did many things to get well. In September, I found a cleanse that cleared my remaining symptoms which were brain fog, pain, chronic fatigue, and hypersensitivity to food, mold and chemicals.
I believe mold is a major contributor to all illnesses and can suppress the immune system so that other things like Lyme and Co-infections can do more damage.
For us, discovering the mold and getting out of our house, taking nothing with us... was a life saver. I think if we had stayed in that house we would all be dead.
I know several people with mold illness who are deaf now from the mold. I have heard people rave about silver in the ears... not sure I would try that myself and I never did.
Maybe diluted food grade hydrogen peroxide in the ears? I don't know... I wouldn't want to do any more damage.
Sinus problems from mold are helped with a netipot - sterile warm water and 1/2 tsp baking soda, 1/2 tsp salt, 1 teaspoon xylitol
Asthma from mold has been completely healed with one drop of GSE in an ounce of saline solution breathed in through a nebulizer.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Judie
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posted
Could be the mino... I had some VERY strange effects like that happen on that drug.
My friend had sudden hearing loss (he went through ALL the standard steroid treatments, injections and all).
After no improvement, he saw an acupuncturist who thought it was related to Bell's Palsy and started treating him for that (which got me thinking Lyme, but he wouldn't hear of it when I mentioned it).
I'm sorry, but he's still not better. I mentioned his problem to an ND I know who is an expert on pharmaceutical drugs.
When I mentioned his drug list, she was positive it was from one his meds (he's on several meds for "other" issues).
Good luck. This is one of those illnesses that regular western medicine doesn't understand. They throw steroids at it as a fix because they don't know what to do (but it usually doesn't fix it).
It's good to get checked just to make sure there isn't a cyst or tumor there (my friend had that test too and it showed nothing). It's probably from some kind of general inflammation though.
By the way steroids gave me PERMANENT eye damage (it came on suddenly and WAS NOT gradual which makes me concerned because your hearing loss was sudden). If the steroids haven't given ANY relief, please start weening off. It's safe to stop steroids, but you need to ween off slowly, not just suddenly. I understand steroids for life-threatening problems, but for sudden hearing loss it's just what doctor's give for when they don't know what to do.
My friend has read everything imaginable about sudden hearing loss. He's been dealing with this problem for over a year and this is what I've learned from his experience.
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dbpei
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posted
I had severe, sudden sensori-neural hearing loss in left ear before I was on any meds for lyme or even knew I had lyme. I was treated with a short taper of prednisone, which did not bring my hearing back.
I also lost half of my vestibular functioning on same side as hearing loss. I had mild vertigo that corrected itself over time.
I was diagnosed with atypical Meniere's Disease, but soon developed other strange symptoms (vibrating/pulsating sensations, bug crawling sensations, emotional mood swings, brain fog, eye twitching, facial numbness, and several more) which lead me to eventual diagnosis of lyme disease.
Before I started ABX, I did start taking Valtrex (an anti-viral prescription drug) and Lysine which brought back some of my hearing.
When I started ABX, it was minocycline and rifabutin. My hearing and tinnitus did not worsen with these meds (although I know that minocycline can be ototoxic for many). It was when I started using zithromax that I had another drop in hearing and my tinnitus went through the roof.
Momlyme, I don't know if I would trust hiring a mold remediation company to come into my home and test - as they have a conflict of interest - looking for work they will be paid to do... Are there any companies that just check for mold but are not in the business of remediating?
Also, are there any blood tests that can be done to determine whether mold might be a cause of this? I know there is a very expensive test that can determine whether you have trouble detoxing mold. Just wondering if there is anything else...
I know that chronic lyme is a breakdown of your body's homeostasis and mold could be a contributing factor. The whole thing is just so exhausting.
I didn't mean to hijack your thread terv.
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Judie
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posted
Oh, another thing my friend tried was chiropractic treatment. This didn't help either.
The only thing he didn't try was changing his meds. His doc (a regular MD) had put him on 5 different meds at once about 6 months before the hearing loss (they were for things like high blood pressure, heart issues etc....).
He's terrified to lower the dose on any meds because it's going against regular med advice so he hasn't consulted with the ND.
One thing that seems universal is the longer the sudden hearing loss goes on, the less likely you'll get full hearing back.
If you can, try to find an ND (or even and LLMD) with pharmaceutical knowledge (not all of them know about regular drugs and just mainly with herbs).
Minocycline caused me HORRIBLE vertigo. My head felt terrible. Eventually it felt like I was wearing a mask. I had something similar happen to me on sulfa meds before and knew this was the beginning of an allergic reaction (my head and neck started to swell next).
If you start feeling any weird pressure or pain in your head or face, stop the mino immediately. It's not worth it to risk the next part of the allergic reaction coming on.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Dont worry about hijacking. The mold could be an issue and it is an interesting topic.
I have been on zith and it may have affected my balance but once off of it I have been fine. None of the meds I have taken, besides ibuprofen, have given me tinnitus. Actually tinnitus was one of my lyme symptoms and it has cleared over time.
Before I was diagnosed with lyme i was also diagnosed with atypical Menieres because after all the hearing/vestibular tests including a MRI for an acoustic neuroma and they couldn't find anything else. The ENT I am going to diagnosed me with this and will probably just tell me that is what I still have.
Maybe it is a virus. I just hope my hearing isnt gone for good. I just found out from a blood test that I have been classified as post-menopausal. I havent even gone through menopause - that I know of.
Posts: 832 | From Somewhere | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Sorry that I just don't have the capacity to formulate an individual reply to you. I've tried for a couple days and just can't do it.
However, so much of what I'd say is here. Start with the OTOTOXIC detail and then also check
to be sure your LIVER SUPPORT is as good as it can be as that may help the ears.
While lyme can cause deafness, so can some of the Rx necessary to treat it, even at low dose.
You might consider moving out of the Rx and get a RIFE MACHINE if you can. Lyme still needs to be treated, of course, but if the Rx are too toxic to your ears, another way should be explored.
And, as others mention, there are other factors as well. So much detail here:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you protecting your ears from noise now?
Wear ear plugs when using a hair dryer or even near one.
Wear dB-rated ear MUFFs when using a blender, food processor, coffee grinder, vacuum, lawn tools, in traffic or at a concert.
Ear plugs are not enough for these conditions.
If you use EAR PODS, in the ear style, stop. Now. Never look back. Cut the cord so temptation is gone. In the ear pods can destroy hearing and those with lyme and those taking certain antibiotics have a much lower threshold at which noise can damage the ears.
Normally, it's 90-seconds of 85 decibels (dB). A hairdryer is about 100 dB.
More detail about this and WHAT CAN HELP in that thread above.
Certain nutrients are essential for you right now, too.
Take care and good luck. - -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
LL Naturopathic links here, too. -
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
terv, lyme and the coinfections caused my female hormones to be very low and I was classified as post-menopausal.
I didn't know I had lyme at the time. I went on hormone replacement to get my hormones up to a normal level. All hormones (estrogen, testosterone, etc.) were very low.
Once I got good lyme treatment, this all reversed and I became premenopausal again. I was able to stop my hormone replacement after 5 years of being on hormones.
The power of lyme disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - thanks for the possible good news. I have been in peri-menapause for while. The FSH test was ordered after my last appt with my hormone doctor. I haven't had a period since February after I lost 5 more pounds while going through some sort of lyme treatment.
Keebler- can I use any kind of headphone? I spend lots of time at sport practices and listen to books on my ipod. The ear buds are great for this especially because it doesn't put pressure on the TM joint. I will look through the thread you listed as it looked like a lot of good info.
If this was caused by some drug, and not a herx, why wouldn't it effect both ears? My left ear is totally fine. No tinitus or anything.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
terv, I have significant hearing loss in my left ear and not as bad in the right. I chalked it up to being bitten on the left side of my body. My PCP kep looking in my ear and saying "it looks good." The problem was happening in the inner ear. SEE THE ENT! Also, the Lyme destroyed part of my pituitary that makes cortisol stimulating hormone, thyroid stimulating hormone and there are no signals to the organs that produce sex hormones. My theory is that when I had my first bout of ear problems, I started to have some eye symptoms...if you follow a line back from the eyes and the ears it intersects in the pituitary...a lyme critter would find my pituitary easily. Prior to my tick bite, I was doing fine, but that is everyone's mantra here, isn't it?
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Judie
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posted
"If this was caused by some drug, and not a herx, why wouldn't it effect both ears? My left ear is totally fine. No tinitus or anything. "
A lot of illnesses/problems only effect one side. There are actually illnesses where the hallmark is it only effecting the left or right side.
Sudden hearing loss is an INNER ear problem (no looking in the ear is going to help determine anything).
It usually only effects one ear, that's a hallmark of this problems even if it's drug related.
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dbpei
Frequent Contributor (1K+ posts)
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posted
When you have sudden hearing loss, it can have various causes, including a tumor in the auditory canal. That is why a good ENT likes to evaluate. They can also determine whether it is inner ear, middle ear or something as simple as ear wax.
I also had 3 brain MRI's in year I was diagnosed with lyme. I had one lesion but was able to rule out tumor. I still don't know if the lesion is related to lyme and won't know until I have another done, which I am in no hurry to do.
Your question is good - about why would only one side be affected if it is by meds. Most of my problems are on one side, but now I am plagued by tinnitus on both sides. Is this the meds? Or is it progression of Lyme??
From what I have read, lyme will hit your most vulnerable area. For me, I already had some high frequency hearing loss from years ago on left side. This is the first place it hit. I also have a lifetime of poor vision on this side. this is side of my brain where the lesion is... Who knows?
But taking all the ABX makes me really nervous about causing more damage. Not treating makes me more nervous. I am on Samento and Banderol now, and will likely start retreating for babesia soon. Tinnitus is changing for the better, but I still have some very bad days. Hoping the herbs are going after cysts and biofilms in my head.
My tinnitus actually changes with body postural changes now. It never used to do that. Makes me think it is related to inflammation in that part of my body (neck, 8th cranial nerve, meninges). I am also chelating heavy metals, which can be a player in all of this.
Posts: 2386 | From New England | Registered: Aug 2011
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momlyme
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posted
quote:Originally posted by dbpei: Momlyme, I don't know if I would trust hiring a mold remediation company to come into my home and test - as they have a conflict of interest - looking for work they will be paid to do... Are there any companies that just check for mold but are not in the business of remediating?
Also, are there any blood tests that can be done to determine whether mold might be a cause of this? I know there is a very expensive test that can determine whether you have trouble detoxing mold. Just wondering if there is anything else...
I know that chronic lyme is a breakdown of your body's homeostasis and mold could be a contributing factor. The whole thing is just so exhausting.
If you are not in the northeast, she may be able to suggest someone in another area. Or the yahoo group "sickbuildings" is a good place to ask. Carl Grimes, Dr. Jack Thrasher and many others are very helpful on that board for all things mold related.
I don't believe the HLA-DR genetic susceptibility test is expensive but it may be. Ours was covered by insurance.
On the "Surviving Mold" site, under the tab "Diagnosis" there are "Lab Tests" and "Lab Orders" we did many of those to confirm the mold illness...
IMO, if you have a positive result in your home and you are sick... mold is contributing to your illness and you should move away taking nothing with you... at least on a trial basis. See how you feel.
Many people will pack a bag and take their clothes with them and this will not do. Those clothes will make you sick. Pocket books, shoes, books, whatever you take from your moldy space to your new space has the potential to keep you ill. Make a clean break for 1-2 weeks. Buy new clothes or wash the old ones in a laundromat with 1-2 cups of ammonia.
For us, my family... mold was THE major factor. Two of us tested positive for Lyme and we were very sick while living in the mold. Mold holds your immune system down and allows the Lyme and coinfections to take over. If you have heavy metals, this complicates things further.
Yes, it is complicated and exhausting when you are sick and trying to help yourself out of this illness. I have 2 analogies that have helped me...
peeling the onion: dealing with the most prominent symptoms and figuring out what is causing those and treating that infection.
toxins in < toxins out: make sure the # of toxins entering the body is less than the # of toxins entering the body. Eat organic, use organic/all natural cleaners... most recently, I am on a nutritional cleanse that is really helping me. My son will be starting it over the Thanksgiving break. My husband has also done the cleanse.
We are all being constantly attacked by a very toxic world around us. There are 80,000 chemicals that are in cleaners, household products, lotions, shampoos and other things we use daily... less than 200 of those have been tested for their safety.
Our indoor air may have mold, viruses, bacteria and other toxins. Our food is becoming less nutrient dense and more filled with pesticides, antibiotics and hormones... not to mention GMO, BPA, and other toxins we are ingesting when we buy our food from supermarkets.
I hope I did not go on so long that I lost the point. I am not a doctor. Just a person who has seen a lot of sickness and I believe we can all get well if only we address the cause and not the focus too long on the symptoms.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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dbpei
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posted
thanks momlyme. This stuff is daunting.
Posts: 2386 | From New England | Registered: Aug 2011
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Went to the ENT on Monday. Hearing test revealed that I had significant hearing loss starting at 1500 Hz. There a lot of different points but the first one I think is just the ordinary beep and that was 25 db down. Then there are more point which I think is my hearing when there is noise present in the ear. Those are down 80 db which probably explains why I cant hear when there are other people talking. Anyways the diagnosis was a Sudden Hearing Loss Event. Prescribed prednisone. ENT also said I have about two weeks from the time the event occurred to treat this before it becomes permanent. I was definitely at the end of my time.
To reverse in time some. My initial issues which got my on the road to a lyme diagnosis were in my right ear/ TM joint. ENT did a bunch of tests and the end result was abnormalities with the eighth cranial nerve and a diagnosis of Menieres because he had nothing else to diagnose me with (he admitted this).
Went to LLMD Monday afternoon showed him the results and said it happened 4 days after last dose of flagyl. Since the eighth nerve was part of the initial issues, His theory is that there a bunch of cysts were on the that nerve and the flagyl burst them damaging the nerve. He said I didn't have much choice but to take the prednisone to try to get the hearing back. However he wants me to try to wean off of them faster if I am showing improvment saying that taking the prednisone will make matters much worse lyme wise.
Anyways, he said this will be very difficult to treat because of what happened. He has to tread lightly to make sure no more damage is done. He took me off flagyl.
At this point (Thursday) it doesnt seem like much of my hearing has come back. Maybe I am wrong. I will call the LLMD tomorrow to tell them this and ask what to do.
Keebler - the ear plugs were a great suggestion. I am living with them in my ears. Any type of loud noise causes the right ear to "fill back up".
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dbpei
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posted
terv, sorry your severe hearing loss was confirmed. Your LLMD has an interesting theory that never would have occured to me.
While I was on prednisone after my sudden hearing loss, my hearing did not improve at all. But strangely, a few months later, there was some gradual improvement. When I started taking Valtrex and lysine, there was even more improvement.
Unfortunately, I lost more hearing this past summer while taking zithromax and exposed to loud music at my daughter's wedding. No improvement yet. I haven't given up hope, but I realize that the loss may be permanent.
Hope you find some improvement. Take care.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Thanks for the sympathy. This is hard to deal with as I thought I was well on my way to recovery becaue my herxes had subsided quite a bit although I still had lingering issues.
I think the subsiding herxes were a clue that to the LLMD that a lot of it was in cyst form even though I have been using flagyl since February. It is interesting that it took this long for it to hit the nerve. Flagyl is the one thing that always makes me herx and every herx has been different.
I am going to call the LLMD today and see what they suggest. I am tempted to continue as my hearing is important and if the steroids are going to give me a chance of that back then I inclined to keep going.
I did find the study that listed the prednisone protocol I am on (I am only getting the prednisone though.
A slightly better recent double-blinded study of only 60 patients split into 3 groups (Battaglia et al, 2008) indicated that patients treated with a combination of intratympanic dexamethasone and high dose steroids are more likely to recover hearing than those treated with high dose steroids alone. Placebo IT injections were used in one arm. The steroid regimen involved prescribing 66 tablets of prednsone (10 mg) given in a dose of 6 tablets for 7 days, then 5 capsules for 2 days, then 1 less capsule per day until finished. IT steroids or placebo were administered once/week for a total of 3 weeks. This study suggested a powerful treatment effect where the combination group did far better than groups with either IT dexamethasone alone or high dose steroids + placebo injections. This protocol also would be expected to have numerous steroid side effects due to the prolonged use of high-dose prednisone.
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dbpei
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posted
terv, It has been a while since I looked at Timothy Hain's website. It looks like there is more updated information since I was last on.
I have frequent changes in ear pressure, nystagmus and some vestibular loss. There are many conditions that include these symptoms. When reviewing some of the information on this site, it makes me continue to wonder if my hearing loss and other symptoms could be unrelated to lyme. Have you ever thought about this possibility?
There are so many disorders that can manifest as sudden hearing loss and tinnitus. I wish Dr. Hain was in my geographic location. He seems like the guru of hearing and vestibular disorders.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I tried to explore other causes with the NP at the ENT's office and got nowhere. She said that no matter what the issue prednisone was the only treatment possibility that was available. I am going to go back and get an appt with the ENT for a repeat hearing test. Maybe he will be open to other treatments.
I tracked with my dog yesterday which requires a lot of balance, for me anyway, to lay the track. Amazingly my balance was really good.
I looked more through Hain's website and it does site flagyl as being ototoxic. Maybe I was one of the several.
Metronidizole (Flagyl) has been reported on several occasions to be ototoxic (Blake and Butt 1984; Hibberd, Nicoll et al. 1984; Hibberd, Nicoll et al. 1984; Lawford and Sorrell 1994; Iqbal, Murthy et al. 1999; Riggs et al, 1990). Metronidizole toxicity fortunately appears to be rare and documented only by sporadic case reports
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