Why are LLMD's not warning people about this risk?
I think I have seen enough posts here to see the risk is significant.
I am curious if people have a feel which abx seems to be the most risky?
I think I have seen Zithro and Doxy as the main culprits, but they may all have this risk
It seems that lyme patients may somehow be more susceptible to abx induced tinnitus since
I have not heard of this side effect for abx users in the non lyme population.
I have tinnitus and am contemplating lyme and abx treatment, but this information is tending to drive me away from abx therapy
Posted by amberini (Member # 21281) on :
The "mycin" drugs are part of the family of drug ( gentamicin in particular ) used to destroy the inner ear. That is done by injection and at a higher, one time dose but can be repeated several times if needed.
Zith can cause Tinnitus for non-lyme patients also but not everyone. Since I have long term Tinnitus, I would not personally opt to take that one and if offered would ask for something else.
As far as why don't doctors discuss this, I think it unfortunately boils down to the lesser of two evils.
If you are worried, tell the doctor and see if there is another combination that might not have this possible side effect.
Best to you.
Posted by lululymemom (Member # 26405) on :
I think abx can worsen a pre-existing condition, but tinnitus is also a symptom of Lyme disease. It is my feeling that the tinnitus that is caused by abx usually subsides once the abx have been stopped.
Decreased hearing in one or both ears, plugged ears Buzzing in ears Pain in ears, oversensitivity to sounds Ringing in one or both ears
Posted by mattnapa (Member # 26414) on :
Here is a link on tinnitus and insulin resistance that is interesting
Look into the connection between Herpes Virus and Tinnitus. Many have found antivirals have helped reduce or eliminated the noise.
Posted by bcb1200 (Member # 25745) on :
tinnitus was one of my first and most problematic symptoms. I did Biaxin for 6 months and have been in total treatmetn for 9.
Tinnitus is much better today. The abx helped me.
Posted by Camp Other (Member # 29797) on :
Tinnitus can occur due to antibiotic use in the general population. It is not just a Lyme disease patient problem. Macrolides - Zithromax and Biaxin can cause this - as can a few other antibiotics and even antiprotozoan meds.
Three things to do before taking any medication:
1) Check the complete list of documented side effects on different web sites. Some sites have somewhat different lists for each drug.
2) Go to the drug company's official web site and read the PDF of the package insert.
3) Check drug adverse reaction report and review sites to see how other patients have been affected. Do note, though, that the group self-selects more for negative outcomes than positive ones.
You can also get tinnitus from Lyme and co. It just depends on how it is affecting you.
Posted by mattnapa (Member # 26414) on :
Thanks all, some very informative stuff. I wiil beat the tired drum however. Why is there no continuing gathering of information by the doctors or pharms of the reported effects of these drugs on patients?
In other words if patients are getting tinnitus from abx is anyone keeping track of that? Or are they simply relying on blind studies or some other source for the claims about the drugs side effects.
Secondly there seems to be little information about specific prevelance, just general warnings. Yes there is an anecdotal uncertainity in taking patient testimonials on how they are effected by drugs, but to gather no data is clearly worse
Posted by lymeboy (Member # 24769) on :
In short, because there's no money in telling people that the drugs they're being sold are harmful.
Posted by bcb1200 (Member # 25745) on :
I'm pretty sure all "mycin" drugs / macrolides have hearing / vestibular risks which is printed on the warning sheet that comes with the Rx.
Posted by Camp Other (Member # 29797) on :
What bcb1200 said... and whatever isn't on there is on the patient review sites as well as drug info web sites.
Posted by Rumigirl (Member # 15091) on :
This is NOT a small issue! Although, as someone said, sometimes you have to weigh the lesser of two evils.
I have had really bad tinnitus and hearing loss for decades. But zithromax made it way worse about 1 1/2 years ago---screamingly loud. And, contrary to what they tell you, it didn't go away when I stopped it.
I had the same reaction to biaxin and went right off it. Now I am on rocephin and Mepron, etc. But the tinnitus has gotten really dramatically worse again. Not sure what to do, as without abx treatment, I was in way worse shape, and alternatives didn't work.
LLMD's do know (or should) that the macrolides: zith and biaxin, do cause tinnitus. But they don't know the finer points of drug induced tinnitus. I got a book that Keebler recommended, Ototoxic Drugs. It's expensive, but very comprehensive. YOu can also get a lot of that info on the guy's website (Neil Baum).
It's a mine-field for sure. Not sure how to navigate it better. But don't throw the baby out with the bath water, as they say.
One other point: there are many causes of tinnitus. One of them is hearing loss! In my case that's a huge cause, unfortunately. It's the brain's way of trying to make sense of things that you try to hear but can't. But the darned tinnitus is so loud, I feel like I'm insulated and can't hear even more! (I need to get hearing aids, unfortunately. Sigh).
Posted by Camp Other (Member # 29797) on :
Rumigirl,
My tinnitus didn't go away entirely but it did improve. Vastly. I think it depends on the individual and how they are infected.
I'm sorry your problems have been so severe. I think every LLMD must warn patients about this side effect and its potential to be permanent. I think this and warnings about Plaquenil's effects on the eye are paramount.
Posted by Cass A (Member # 11134) on :
I already had tinnitus when I was diagnosed with Lyme and also Babesia. My LLND elected Mepron/Zith. Since the tinnitus got worse, I took the Zith every other day, which didn't seem to increase its loudness. I was on this combo for about 10 months, until the night sweats went away. (I'd been undiagnosed since at least 1998)
I have used some herbal ear remedies with DMSO, which seem to have helped a bit.
It seems slightly less loud since I've been taking the Allergie-Immun drops.
This is an area that doesn't change much for me, one way or the other.
Tinnitus has been discussed on Lymenet a LOT. Check out the search feature to get some links to useful info!
I've had tinnitus since 2004.....I'd be very happy if it stopped some day.
Best,
Cass A
Posted by bcb1200 (Member # 25745) on :
Some believe the tinnitus is due to treatment...it's a sign the meds are working.
Example: I was off meds for 2 weeks and tinnitus was okay. When I started Doxy (not known for Tinnitus) my tinnitus got worse because lyme was being killed. It is now much better.