I have had ringing in my ears since I started treatment almost 4 years ago, but Friday I woke up with hearing loss in my left ear. I hear very very loud wooshing in it. I went to the ENT today and there is no infection, ears look perfect. We did the hearing test and I can not hear low level sounds and have hearing loss. Dr thinks it is from a viral infection (I am positive for HHV6) and wants me to do a low dose 10 day course of prednisone. He said it could be permanent if we don't treat it.
I called my LLMD's office and she is out of town, but the LLMD who shares the office said he would recommend 5 days max, they would not help me with max dosage etc.. The only thing they told me to try was Wormwood.
I have Valtrex and we bought Lysine. Wondering if I should self treat with that instead?
I am at a complete loss without any real LLMD help right now. Terrified of losing my hearing permanently and the way I feel right now is miserable. It is making it hard to even function the noise in my ear is SO loud.
I know prednisone is a huge no no so I am scared to try that... Any thoughts/advice
Posted by hiker53 (Member # 6046) on :
I was put on prednisone when I first got my Lyme symptoms which were all in the ear (but no hearing loss). I feel like it made me much worse, but at the time I did not know I had Lyme.
I am sorry you are in this situation and I will not try to tell you what to do, but I will say a prayer.
Best wishes.
Hiker53
Posted by Keebler (Member # 12673) on :
- If any drug or OTC product you currently take is ototoxic, I (myself) would stop it. The trouble is, that many needed to treat lyme can be ototoxic so I hope you've been on good liver support throughout to help.
Valtrex is ototoxic. (sorry) I just looked in 2nd edition of Neil G. Bauman book: "Ototoxic Drugs" p. 474. it can have cochlear & vestibular ramifications. It has a "class 2 risk assessment" -- I'm editing in this part -- and am too tired to figure out what that means, exactly.
As with other ototoxic drugs that may be needed for treatment of infections, liver support may (or may not?) be enough of a protection but certainly liver support is required.
In the ear "pods" can cause severe ear damage. If you use them. Stop. Now. In fact, best to avoid any headsets. Too close to nerves. (see the book: The Mozart Effect for why).
Pardon any hint of being abrupt here. Just trying to complete a task . . . can't think of how to make this more kind. Wish I could.
You really need the new 3rd edition of the book, Ototoxic Drugs but in the Tinnitus link below are some links that can help you determine if some Rx are ototoxic. So many are.
Acetaminophen especially. And certain antibiotics. Cross search the web with the term "ototoxic" with your meds.
But don't assume if there is no search result that any drug or OTC is not ototoxic. there are hundreds and no complete list is online.
I also would avoid any OTC pain products as they seem to contain either acetaminophen (ear, liver issues); ibuprophen (kidney and blood vessel constriction, you don't want that); or caffeine (not good for ear nerve issues, either).
Sleep drugs can also affect ears.
Also cross search your current meds with "Neil G. Bauman" - he's the expert in this area.
VERY IMPORTANT: HEARING TEST VALIDITY IN QUESTION
I know this sounds odd. But, if the "very very loud wooshing" was going on at the time of the hearing test the test cannot possibly be a correct measure of low level hearing loss. It just can't.
Anyway, I would never count on just ONE test to dictate any action. There are many different kinds of tests required. Not just a hearing test.
and there are many other ways to approach this (reduce inflammation with something better than a steroid) but I would sure question the test validity.
I am not a medical person at all - please don't assume that . . . but I've had severe ear issues. I've studied so much about ears. I try to back up why I suggest.
My suggestions may not be in ranking order. Just what comes to mind first is SCD, to rule it out. If not that, inflammation seems key and will block any hearing test from being accurate.
1. consider ruling out possible SCD - Superior Canal Dehiscence. The whooshing sounds suspect for this (but not necessarily).
sound sensitivity is usually also involved. Links for SCD in the Tinnitus set but first,
Search YouTube for "the musician who heard too much" . . . watch that ABC News video.
2. your liver support? Liver support can help ears, too.
3. MAGNESIUM. MAGNESIUM. MAGNESIUM - yes, it's so important to help relieve inflammation but also with the nerve fibers. You can't take it all at once, though . . . I just wanted to emphasis the importance of it.
BERBERINE has helped me with my ears.
Diet totally free of even any trace of hidden GLUTEN is absolutely necessary to see if that is connected. It can be in many ways. trigger inflammation but also nerve damage in some folks
Same with CORN, DAIRY, SOY . . . trigger inflammation.
additives like ASPARTAME, MSG (under any name such as "natural flavors") - these can cause major issues with ears and nerve fibers
Links in next post. I have to gather them. -
[ 07-29-2014, 09:26 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed.
And . . . what protocol is required while treating lyme if any steroid is needed for emergency. -
Posted by Keebler (Member # 12673) on :
- SOTA LIGHTWORKS . . . if I had access to one, I'd sure use it. Just Google for their direct site. I'm talking about the very special LED lights . . . I've studied this unit (but not been able to get one) and it sure sounds like this kind of penetrating light could help ears.
Someone in your lyme support group might have one you could try?
. . . not talking about the magnetic pulser. I would not use that near your ears unless you can study more about it first. It may be fine but I've had trouble with some other brand units that pulse and suggest that not. -
Posted by Keebler (Member # 12673) on :
- Be sure to get away from any cell phone & charger units. If you have them, keep them as far away from your body as possible at home. If you are in one end, they need to be in the other. Not even in the same room. At least for now. Even if they are off, they can be very powerful regarding nerve irritation.
Best to AVOID ALL CELL PHONE USE, and use a land line phone if you have one. (sorry!)
Unplug any electronics in your bedroom. Not just turn them off, unplug them when you are in there.
HAIRDRYER . . . BLENDER . . . VACUUM. TRAFFIC NOISE (and vehicle exhaust) . . . Avoid for no (even with ear plugs as they can't protect enough unless for the shortest time possible).
And . . . oh, one more thing . . . uh . . . oh, SCENTS . . . try to avoid any additional scents / chemicals. This can really matter.
I wish you calmness (especially after reading all that can be part of this picture). I hope something here is of help. It's often everything that matters, though, the cumulative effect.
Call your lyme support group and ask about any LL hearing experts. -
Posted by Keebler (Member # 12673) on :
- Frequent "get a way moments" really help, too. (Posting as some bit of compensation for all the other stuff above):
- By: Michael Aynsley, June 15, 2014 -
Posted by Judie (Member # 38323) on :
A friend of mine WITHOUT Lyme had sudden hearing loss. They did 3 courses of steroid shots and they DID NOT help.
I don't know how steroids would help with a virus. That makes no sense.
Posted by seibertneurolyme (Member # 6416) on :
Did not read all of Keebler's suggestions, however, I have some info you need to consider.
Have you been tested or treated for babesia yet? Steroids are given to mice to prove a low grade babesia infection. So it is not just lyme that steroids can make worse.
Most LLMD's will consider short term courses of steroids in life threatening situations and in situations such as yours - but they would only do that if you were also taking antibiotics and/or antimalarial meds at the same time.
Another thing to consider. Nutritional supplements are very important to treat ear and brain issues.
Kids with ear infections do better with aggressive probiotics when they are on antibiotics.
Antioxidants are very very important to brain health. Pychnogenol (pine bark extract) and vitamin c and CoQ10 are all good as they cross the blood brain barrier.
I do not have lyme or tickborne infections, but this summer I have had problems with excessive ear wax which has caused hearing problems. Rather than spend the money to have my ears washed out at the docs I tried a nutritional supplement first. I actually bought it at CVS. I was amazed that I could tell a difference with the first dose.
The supplement is called Lipo-Flavonoid Plus. It has 30 tablets per box. Suggested use is 2 tablets 3 times per day for 60 days. And then the maintenance dose is 1 tablet 3 times daily.
The supplement is actually marketed as a help for ringing in the ears.
I was somewhat surprised by the list of ingredients. Each tablet has 100 mg vitamin c and small amounts of the B vitamins. The secret ingredients are 500 mg per tablet of a combo of choline bitartrate, inositol and high potency lemon bioflavonoid complex.
Choline is one of the good fats that lyme and babesia both deplete and it is needed for optimal liver function.
The supplement might be worth trying.
Good luck.
Bea Seibert
Posted by terv (Member # 29410) on :
This happened to me but no whooshing sound. Just hearing loss. ENT didn't know what it was but told me that I had 10 days to resolve it. I was on my 9th day because I put off going in there hoping it would resolve on its own.
I luckily happened to have an LLMD appt on the 9th day. He thought that a bunch of cysts might have burst on some nerve (can't remember which). I had been taking flagyl at the time.
He told me that I really didnt have much choice if I wanted my hearing back but to use the steroids and to wean off of them asap.
I know steroids go against what everyone recommends on this board but today I have my hearing to what it was before I lost it so I am happy with that.
One website that I found useful with the whole hearing thing was
APMOM, sorry about your hearing loss and tinnitus. I had a very similar experience before we knew I had lyme. I had severe low level hearing loss in my left ear overnight.
This was soon followed by horrid whooshing tinnitus that sounded like a constant machine operating in that ear. Then I developed hyperacusis (sensitivity to normal sounds). It was a terrible time in my life.
I did take 7 days of prednisone and it did not improve my hearing loss. It seemed to make me feel better while taking it (more energy, clearer thinking...), but over time following its use, I began to feel dizzy as though on a boat. And I became fatigued, anxious and had terrible mood swings. My head felt like it was trembling all the time even though I appeared perfectly calm.
I tried for several months to learn what caused all of this. I went to neurologists, a neurotologist at Mass Eye and Ear (saw the best) to rule out things like SCD, acoustic neuroma, perilymph fistula, and all the things that could cause sudden hearing loss.
I got a diagnosis of idiopathic sensori-neural hearing loss and was told that my hearing would likely never come back in that ear and that hearing aids would not help me.
I eventually lost half of my vestibular functioning (damage to 8th cranial nerve) over time with the hearing loss and got a DX of Atypical Meniere's disease. I did all kinds of research on this and learned about valtrex and lysine at that time.
I came across a study done by a doctor in Japan that showed incredible improvement in symptoms of Meniere's disease with the use of these 2 meds (hearing loss, tinnitus and vertigo). It was not until I saw my first LLMD, that I tried Valtrex. I was able to get Lysine over the counter. Taking both did seem to help my symptoms.
My hearing loss improved but never came back to its baseline. Then when being treated for lyme, zithromax seemed to cause further hearing loss at the same time I was exposed to loud music at my daughter's wedding. (Be very careful of exposing yourself to loud sounds, as Keebler says. The combo of this and antibiotics can cause irreversible damage as I learned the hard way)
I have the study in a PDF file, but cannot find it online. If you PM me with your email address, I can send it to you.
Below is a good site on hearing loss and supplements to help...
- The main thing is that there is no proof of hearing loss if all they have done is a hearing test.
The "very very loud wooshing" makes a hearing test, as the sole tool to determine low level sounds, totally inadequate.
You may not be able to hear at the moment out of that ear, but that does not mean there is hearing loss.
Did someone at the ENT's office take a stethoscope and listen to the arteries in your neck? They should have.
That kind of tinnitus can have many causes. Inflammation in arteries (as opposed to inflammation in ear tissue) is the most likely of Pulsatile tinnitus. Not all "whoosing" is pulsatile but it can be.
And steroids are not the only way to aggressively address inflammation. There are so many other ways.
PYCNOGENOL (as Bea says above) . . . I had forgotten about that and, indeed, that would be my first choice for something you do ASAP. The first time I took it, within on hour, my ears were so much better.
Get the kind from pine bark, though, not from grape skins (it did not work at all for me. The pine bark kind was great, though. Get the best brand you can, the cleanest.
The PYCNOGENOL would be in addition to MAGNESIUM, still the #1 anti-inflammatory helpful in so many other ways, too. But magnesium can take longer to work. Pycnogenol -- and ALLICIN can clear ears within an hour of taking a capsule -- for me, anyway.
There could be cochlear or vestibular nerve damage but other tests should be done before considering steroids for possible unprotected tick-borne infections.
With "whoosing" - now that can have many causes that are not even so much about the ears. So, it's also important to have a doctor determine if your carotid artery is clear. Other differences in that kind of tinnitus from other kinds - sometimes.
Inflammation is very often involved, so the anti-oxidants / liver support, certain food avoidances are important. Yet "very, very loud Whoosing" can be a kind of loose descriptive so do also consider:
one thing not considered by regular hearing experts, though, is that lyme / other tick borne infections can cause Vasculitis, inflammation in the blood vessels, etc. so it's still best to be evaluated by a LL ear specialist. -
[ 07-30-2014, 10:06 AM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
Pycnogenol, hearing - 2 abstracts -- one of those:
Improvement in symptoms and cochlear flow with pycnogenol in patients with Meniere's disease and tinnitus. June 2014
Excerpt: . . .
RESULTS: There was a more significant improvement in all registry items at 3 and 6 months in the Pycnogenol group . . . . The number of lost working days was lower in the Pycnogenol group.
At 3 months, 45.4% of subjects using Pycnogenol were completely asymptomatic in comparison with 23.07% of controls.
At 6 months 87.3% of the Pycnogenol subjects were asymptomatic compared with 34.6% of controls.
Cochlear flow velocity was significantly better (higher flow, higher diastolic component) in the Pycnogenol group. . .
. . . the decrease was more significant in Pycnogenol subjects . . . at 3 and 6 months. . . . -
Posted by APMOM (Member # 28786) on :
Thank you all for your responses, I really appreciate it! I was checked for wax etc and there is nothing there, ears look great. During the test I could hear no low level sounds at all. It was terrifying to say the least. Talking with my ENT and doing lots of research last night I know that there is a 14 day window after this sudden loss to try and treat and then chances of getting your hearing back are very slim. Unfortunately without the help of my LLMD who is out of town and only getting a few words from another LLMD in the same office I am left to make the decision without the help I would like from her.
I decided to try and get them to refill Valtrex for me (I have enough for 3 days so I am really hoping they pull through) and to take Lysine with it. Also started Mino for antibiotic support and will be tapering 5 days of low dose steroid. Loads of other supporting vitamins etc too, most of which I have already been on for years.
I have 3 kids and am desperate to get my hearing back and time is of the essence. Such a hard decision to make and I am terrified of what could happen either way. Hate having to play Dr with this disease, but it seems to be that way more often than not...
Posted by dbpei (Member # 33574) on :
It must be terrifying to have to make this decision knowing you have Lyme. It sounds like you are doing everything you can by researching things and reaching out to others who have had similar experiences...
It is traumatic losing your hearing suddenly like that and then to have the horrible tinnitus to boot. It sounds like you are handling it all very well. Good luck to you!
Posted by APMOM (Member # 28786) on :
Thank you dbpei, I really appreciate it Posted by terv (Member # 29410) on :
What day in the window are you?
Posted by Judie (Member # 38323) on :
A lot of times doctors throw steroids at a patient when they don't know what else to do.
Sometimes the hearing loss just clears up on it's own without treatment.
I really think my friend may have had an otoxic reaction to one of his heart meds. He had a heart attack 6 months before and was on 5 meds.
I know a doctor who use to work in the pharmaceutical industry and I told her about his symptoms. She said it was probably one of the drugs.
He refused to listen to me and did not pursue seeing her for diagnosis. He still takes the drugs and his hearing hasn't come back.
Posted by APMOM (Member # 28786) on :
I am day 6 of hearing loss today. Some places I read treatment within 48-72 hours is the best chance for recovery. Hopefully I didn't wait too long...
Posted by dbpei (Member # 33574) on :
Judie, a taper of prednisone is a very common protocol for sudden hearing loss. It is one of the few things that has been shown to bring hearing back due to its anti-inflammatory effects. It obviously doesn't help everyone though. APMOM has a very tough decision to make.
Posted by Judie (Member # 38323) on :
"Judie, a taper of prednisone is a very common protocol for sudden hearing loss."
I know, I just saw my friend go through this a couple years ago.
The doc did injections in the ear because that gives the best chance of recovery. After the second injection and no change, the doc didn't wan't to continue, but my friend insisted on the full course. No change.
"And steroids are not the only way to aggressively address inflammation. There are so many other ways."
My friend then did acupuncture to help with inflammation (even though there wasn't any obvious inflammation that came out of the several tests ran on my friend's ear). The acupuncturist thought it was related to some kind of bell-palsy without the obvious face droop.
Again, no change from the acupuncture. I really think it was either an otoxic reaction (or my friend had an undiagnosed tick-born illness).
I've also done tapers of prednisone myself several times before Lyme. Apparently, you're suppose to get benefit pretty quickly if you are going to experience any benefit for the ear.
For me, I got permanent eye damage from topical steroids, so I don't touch the stuff anymore. This was also before Lyme.
There are risks and benefits to steroids. Good luck! It's not an easy choice.
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