I still have the tinnitus that started at the end of April. When it started, I had been taking abx, including azithromycin, for almost 7 months.
I've seen an ENT and their treatment hasn't helped.
I read here and other places that azithromycin can cause tinnitus, so I stopped taking it in June.
My LLMD wants me to go on Biaxin, which is another macrolide and can also cause tinnitus.
The tinnitus is bad enough. I don't want my hearing damaged, too. I'm afraid that's what will happen if I take Biaxin.
My eyes are already permanently damaged. I CAN'T risk my ears, too. It's bad enough that my eyes hurt all day. I close my eyes at night to get relief and the tinnitus is LOUD AND CLEAR.
What does one do when they can't take a macrolide? Isn't there something else that can get the L-form bacteria?
Posted by TF (Member # 14183) on :
I couldn't take zith or Biaxin, so my lyme doctor cured my lyme with high dose amoxicillin (with probinecid) and flagyl.
He cured my babesiosis with Bactrim DS and pulsed artemesinin.
He cured my bartonella with levaquin and then followed that with Bactrim.
So, don't despair.
Of course, I also had to do the Burrascano exercise requirement (one hour of weight lifting/calesthenics every other day). That is also essential to get rid of these diseases, according to Burrascano and my lyme doctor and the others I recommend.
It worked for me. It is over 7 years now that I have been symptom-free, enjoying my life. I don't take any type of meds or supplements.
Posted by sideways (Member # 34352) on :
Thanks, TF.
My doctor is really pushing for me to take the biaxin. I just don't think I can do it.
I've been slacking on the exercise lately. I need to get back to it.
Posted by seekhelp (Member # 15067) on :
Biaxin is the best drug I've ever taken for Lyme. Zithromax never did anything for me.
Posted by canaanbites (Member # 32852) on :
I had the most success with Biaxin over any other antibiotic
Posted by sideways (Member # 34352) on :
I'm glad some of you had success with biaxin. However, I might not be able to take it without harming my hearing further.
The fact that it helped some doesn't mean it won't harm others.
I'm sure everyone is trying to be helpful but beng told how great it worked for someone else is not comforting or encouraging to me when I fear it may the factor behind my tinnitus.
Frankly, it leaves me feeling a little hopeless that there is nothing to replace it.
So again, thank you TF and to whomever PMed me. (I don't remember who that was right now...sorry) I appreciate your giving me the information I need, your kind words and your encouragement. Posted by lymeboy (Member # 24769) on :
I have had horrible ear symptoms. Zith worsened them. I refused to take any more Zith, and I have been on Biaxin for almost a year. While my ears have not gotten much better, they haven't gotten any worse. They are a lot better than they have been in the past ie - hearing loss etc. I can hear fine now.
Just giving you my experience, not telling you to do it. Biaxin is supposed to be a lot better on the ears than Zith.
Posted by desertwind (Member # 25256) on :
With Zyth. I had ear symptoms but with Biaxin I did not. It may not bother you the same way...
Posted by canefan17 (Member # 22149) on :
Biaxin has been great for me. COmbined with Bactrim it's good stuff.
Bart/Lyme causes tinnitus/ringing ears for me - not Abxs.
Posted by dbpei (Member # 33574) on :
sideways, I have the same concern as you. I recently stopped taking zithromax due to severe hearing loss and worsening tinnitus. I do need to figure out what I am going to take to replace it.
canefan, has your tinnitus gotten any better since being treated with ABX?
My LLNP thinks that IV rocephin is the answer for me. I am not sure and am very concerned about the financial drain this will be. I wish we could hear from others who have had hearing loss and roaring tinnitus due to lyme - and how they got better.
Posted by Lymetoo (Member # 743) on :
I understand your concern!! Could you try it for a few days and see if it affects your ears?? It never bothered mine and was a great drug for me.
Posted by dbpei (Member # 33574) on :
I saw my LLNP later today and it looks like I am going to be starting biaxin. It is supposed to have a lower risk of causing hearing loss than zith.
I will be happy to let you know how it goes, sideways. I am praying that there won't be any further damage.
It is encouraging to hear how biaxin helped some of you...
Posted by sideways (Member # 34352) on :
Well, I started the biaxin. I still have the ringing and my ears HURT. Today, I had trouble hearing someone who was 3 feet away from me. I finally had to just smile and nod after asking him to repeat himself three times.
My appetite is zapped too. Is that a side effect? I have to make myself eat.
I'm afraid to take it and I'm afraid not to take it. I'm really freaked out over the whole thing.
I'm going to contact my dr. I don't know what she'll end up doing. I'm allergic to sulfa, so I can't take any of those.
This just sucks.
Posted by Lymetoo (Member # 743) on :
Are your ears WORSE?
Biaxin leaves a metallic taste in your mouth...so yes it could curb your appetite.
Posted by sideways (Member # 34352) on :
My ears hurt so bad right now that I'm crying. I've had pain before, but not like this.
I don't know if it's part of a herx or if the biaxin is making my ears worse.
I already have eye issues. The ears added in are really pushing me over the edge.
Posted by dbpei (Member # 33574) on :
I started biaxin about a week ago. I noticed some strange sensations in my head and ears. I am hoping that it is die off and not lyme and co. causing more damage.
I wish I could tell you that my hearing and tinnitus are better, but they are not. The ringing seemed to lighten up a bit for a few days but the last 2 days is back loud and clear. I hate it.
Sorry you are feeling so poorly and your ears hurt. I have only had some brief episodes of painful ears. It is such a stress worrying about further hearing loss and tinnitus. I totally understand.
Posted by dbpei (Member # 33574) on :
sideways, so sorry. I just sent posted my message the same time your last one was coming through. You might have to get worse before you get better and it could very well be herxing if your ears actually hurt. It means that there is something new going on in there.
But it probably would be best to discuss with your LLMD. Feel free to PM me.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sideways: My ears hurt so bad right now that I'm crying. I've had pain before, but not like this.
Do not take another until speaking to your Dr.
Posted by sideways (Member # 34352) on :
Ambien + muscle relaxer 2 hours later and still got no sleep last night.
Lymetoo, didmt see your message till after I took meds last night. Not taking it today and contacting Dr.
Posted by AuntyLynn (Member # 35938) on :
Odds are ...you have NEURO LYME! That is WHY your optic and aural nerves are getting screwed up! Because you have an INFECTION - and INFLAMMATION - in your HEAD!
You NEED something that will cross the blood brain barrier ... and
ORALS AIN'T IT!
So... you want to *** around until the infection in your sensory nerves destroys the myelin sheath of those nerves and makes your BLINDESS/DEAFNESS PERMANENT??
Or .. you want to STOP that infection as FAST as you CAN??
Keerysmus! If it were MY hearing or eyesight ... the money, and everything else, be DAMNED!
**edited .. please use more discretion**
[ 08-08-2012, 08:47 PM: Message edited by: Lymetoo ]
Posted by sideways (Member # 34352) on :
Wow. Way to kick someone when they're down.
My eye issue has nothing to do with the optic nerve. I've been seen by many ophthalmologists. I'm not going to get into what happened to my eye because, frankly, you're not worth the effort. Suffice to say, my optic nerve is fine.
So, thanks for your armchair diagnosis but you are way off.
As far as my ears and my treatment goes, I'm working with my llmd.
I may or may not have Lyme brain but at least I know I'll get better if I do. Nasty and rude, however, are forever.
To the mods: my apologies. Ban me if you must but I'm not going to let someone address me in that manner and get away with it.
Posted by dbpei (Member # 33574) on :
Sideways, you articulated your thoughts so well. I would guess that you don't have neuro-lyme with that response!
Auntylynn, You never had lyme and haven't walked in our shoes. Our healthcare decisions are personal and each case of lyme is unique.
According to **** there are many ABX and even some herbs that cross the BB barrier effectively. See the section below on IV v. oral ABX
It might be the ototoxic ABX that caused sideways' hearing loss! Once you have had hearing loss, you are very vulnerable to additional loss caused by ototoxic meds. I am convinced that azithromycin combined with exposure to loud noise caused additional hearing loss for me and if I had been taking this med IV, I could be totally deaf!
Like sideways, I am confident that I am going to get well. If it takes a little longer because I choose to do it without IV meds, that is my prerogative.
**edited name of LLMD**
[ 08-08-2012, 08:48 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sideways: To the mods: my apologies. Ban me if you must but I'm not going to let someone address me in that manner and get away with it.
- I've got your back!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sideways:
Lymetoo, didmt see your message till after I took meds last night. Not taking it today and contacting Dr.
good!
Posted by bcb1200 (Member # 25745) on :
Playing devils advocate here.
Lyme can cause tinnitus and fullness / pain. So can Bart / babs.
Zith and biaxin can both cause tinnitus ( zith more than biaxin) But according to many LLMDs and top ents / neuro-otoloistz you typically have to be on high IV doses for this to occur.
What if the zith is targeting the bugs and this is a flare. What if stopping is the exact wrong thing to do?
I'm not trying to confuse the issue and I'm not a doctor. Just try not to panic definitely talk to got LLMD. My ears are problematic too. I've had tinnitus since day 1 of this disease so I empathize.
There are other intracellular options other than macrolides. Metro, doxy, mino, etc
Posted by AuntyLynn (Member # 35938) on :
APOLOGIES to those who may have taken this personally! My mother has neuro Lyme. I watched her decline over 15 years... so you're right, I do not have Lyme, and I am darned lucky to have only suffered "second-hand" - as I was the ONLY member of her large family that bothered to research enough for her to even GET that diagnosis.
Your bodies ARE yours. I was expressing what I would do if it were MINE, or that of anyone I loved!
And for the record, it was my distinct understanding that Biaxin (or similar orals) carry a (high) risk of aural DAMAGE.
As bcb100 so aptly pointed out, the medical community asumes otherwise. Perhaps that "general consensus" (as seen on these boards), was an exaggeration of the facts?
I guess my empathy for your suffering got the better part of my sensibilities.
I DO hope for your speedy recoveries! That was my point!
Posted by dbpei (Member # 33574) on :
I understand what you were trying to do, Auntylynn. I appreciate that you are only trying to help. You just need to do it in a nicer way to not alienate those you are trying to help... Yes, you are right. Biaxin carries a huge risk of causing further auditory damage. I am scared to death that I could suffer more hearing loss and worsening tinnitus.
bcb.... I totally agree with you. I wonder sometimes if maybe the worsening of my tinnitus could mean that the meds are working and it is a herx. Or worse, are these meds causing irreversible tinnitus that will torment me the rest of my life? It is so hard to know whether to stay on your regimen and put up with increased symptoms or to try something new.
All along, I thought bart was behind my auditory problems and as soon as I stopped treating for bart and started treating for babs, I felt all kinds of things happening in my head and ears. It makes me wonder whether the new meds are helping - or if the bart is becoming active again.
My tinnitus has been a huge problem for me and it is distressing to know that I might be worsening it by taking these meds. That is why I am seeking alternatives.
I have not ruled out IV ABX. My instincts are telling me to do some more research and get some more input from other LLMD's before doing IV. Although I like my LLNP, she is not very accessible and this is a huge concern to me.
sideways, I hope you get some help from your LLMD on this. Hearing loss and visual problems disconnect you from the world in a big way. My heart goes out to you. I have read posts about both problems improving over time with tx. (oral as well as IV)
Posted by twicebitten (Member # 5412) on :
I have tinnitus and ear pain and took biaxin for over 4 years, no break. It really helped me. My llmd thought it best to treat my neuro lyme.
I guess what I'm saying is that just because something gets worse before it gets better, doesn't always mean it's the medication.
My llmd told me to expect a worsening of months before anything got better, which did happen.
Your doc should be able to tell you if indeed it's the meds, like an adverse reaction, or if it's a herx response,just part of getting better.
This is a very scary disease to have. So much controversy about treatment strategies and so much diversity of what works for different cases.
I took IV Rocephin and it did not help me at all. The biaxin worked much, much better for me.
I guess in the end you have to listen to your body and it will tell you the right path. I feel your pain, in that it's all very confusing and frustrating. I wish you the best! Find that special path of recovery for you. God Bless
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Yes, you are right. Biaxin carries a huge risk of causing further auditory damage. I am scared to death that I could suffer more hearing loss and worsening tinnitus.