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» LymeNet Flash » Questions and Discussion » Medical Questions » Told to go off all meds.

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Author Topic: Told to go off all meds.
Niere
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I'm so upset right now--I don't know what to do.

I'm currently on Ceftin and Zith. I called my llmd's office today to see if I could go off the zith becauses I've developed ear ringing. It was not a symptom I ever had without treatment, nor did I have it when taking Doxy or Tetra. I wanted to discontinue the Zith and stay on the Ceftin.

The office got back to me and I was told to go off all my meds. That kind of floored me--I said I would like to stay on the Ceftin, the office person told me that no, they work together, I can't be on just one.

I'm so upset--I don't want to go off treatment, I just don't want to lose my hearing.

I don't know what to do.

Am I wrong? Can you not just do Ceftin? I do have babs, maybe he doesn't want to treat the lyme without treating the babs...I don't know.

I'm not supposed to see him again for five weeks. I'm so upset. All because I'm concerned about my hearing.

Please tell me if I'm being unreasonable. I don't want to be. I want to be in treatment, I just don't want to lose my hearing or have constant ear ringing in the process.

Posts: 237 | From Rhode Island | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
randibear
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Sorry to say that my lyme caused the ears to ring. No drug has cured this yet.

Hopefully others have had some success with it, I sure haven't.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Niere
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Hi Randi--sorry that you have been dealing with this symptom for so long. I'm aware that lyme can cause ear ringing, but it's not a symptom I've had before.

I tend to think it's not the lyme, because I didn't have it with the doxy or the tetra. Not to say that it can't be a new symptom for me, I just wanted to go off the zith just in case that was the cause.

I'm so frustrated. I want to get treated, I want to get better, I know I'm going to have to go through hell to do it, I'd just like to avoid any permanent hearing issues if possible.

If it wouldn't cost so much money to repair I'd go pound my head into a wall. [Mad]

Posts: 237 | From Rhode Island | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
atheana
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Dear Niere,
I have Lyme only and have been on Doxy and resently on Moxcycline. On the Moxy my ears started to feel clogged.I can hear myself talk inside my head,I also feel I'm talking louder.
I have been off of abx for about 10days and my ears still feel that way. I hope it's not forever.
I will see a new LLmd next wed and see what he says.
Atheana

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Niere
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Atheana--what a pretty name!

I'm not familiar with moxcycline--have you googled it to see if it can cause the symptoms you are having?

I hope your clogged feeling goes away soon and that your llmd can answer your questions for you. [Smile]

Posts: 237 | From Rhode Island | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
Tincup
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Hey N...

Sorry to hear you are so upset. I know how that feels.

May I suggest?

After things have settled... and you aren't so frustrated... maybe contact the docs office by phone and ask nicely if you should be taking anything in the meantime because it is 5 weeks till your next appointment.

That is a reasonable question to ask.

I personally wouldn't go against what they said to do... as your LLMD needs to know what is going on.

That ear ringing is bad... nightmarish sometimes... so I don't blame you for going off... not at all. I think it was the right thing to do.

Lettuce no what he said to do. OK?

[Big Grin]

--------------------
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Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Niere
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Very wise and sage advice. Thank you. [group hug]

I think I will follow that. I also think I'm going to try to move my appt. up a little bit so it's not a whole five weeks.

I'll romaine you what he says to do. [Wink]

Posts: 237 | From Rhode Island | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
mtree
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Niere......

don't go putting your head through a wall...
...you'll still have the ringing....and a bad headache...... [bonk]

Why not speek to your doctor directly????
when you call the office just tell them you would like to leave a message for the doctor to call you.....if they say why...(which is none of there business really)...just tell them that you have some concerns about being off meds...that you would like to go over with him.....


he may be taking you off all of them to see if the ringing stops...if so then you know it was the meds......

I have the ringing....and also a shwooshy static noise as well......but I know its not from meds.....it can be very annoying... [dizzy]

[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

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katieb
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I had severe ringing in my ears for a long time with treatment. I never stopped my treatment because of it and it did get better. I didn't know you are suppose to stop treatment if your ears ring. I still get the ringing on and off again, but not half as bad as it was. I would call the doctor to see if he can switch the abx to something else.
Posts: 71 | From milford, connecticut | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Tincup
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Well spit out my tea all over the computer screen!

N said..

"I'll romaine you what he says to do."

Took a minute.. but made ME laugh!

Thanks!

[Big Grin]

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www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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LuLuFlorida
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I am sorry to hear about you having to stop meds. I am not sure if Ceftin alone works against Lyme, I know my LLMD prescribes it with a macrolide antibiotic. It is a good thing your called your doctors office though because Zithromax can cause ear ringing. In fact Zith can cause permanent hearing damage. It took me months after I stopped taking Zith for the ear ringing to stop. It was a constant buzz that was in my ears. Do you have an appointment with your doctor soon so you can start treatment again? Hang in there!

Take care,
Lindsay

--------------------
"One day at a time"

Current:
-1.2 IM bicillin three times a week
-1.25 IV Vancomycin every day
-IV glutathione and IM B12
-Byron White since Jan. 2011
-ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano...

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WildCondor
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That is ridiculous!

Zithromax causes ear ringing, and that is a very common side effect.

Telling you to go off your meds sounds very illogical. What didn't you speak to the doctor and ask what's going on? Why didn't he just switch you to Biaxin 2,000 mg/day and Ceftin 3,000 mg
Add flagyl and bicllin to that and you should be good to go! Just my idea! Call them back tomorrow and ask for Biaxin or Ketek.
What was your zithromax dose?

Good luck!

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Niere
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mtree--I don't know why he didn't speak with me directly. I think I will call tomorrow and ask if I can speak with him personally. And thanks for making sure my head doesn't go through a wall. [Wink]

katieb--while I don't want to tiptoe through all my medication, I do know that zith specifically can cause ear ringing. I didn't mind it when it was minimal but it just passed the "minimal" point in my estimation and I don't want it getting worse. I did a search here and it seemed like the ringing went away for some people but not all. I want to get better but I would like to salvage my hearing as well. If there were no other med than zith I would suck it up and take it but it does seem like there are others so I don't see the problem in his just switching me to something else. [confused]

Tincup--glad you appreciated it. [Smile] Let me know if I owe you anything for the computer screen. [Wink]

Lindsay--thanks for the support. [Smile] I'm going to try to move my appt up at the very least. I don't like not treating but I do like my hearing.

WildCondor--wow--that's some dose! I am/was on Ceftin 500 mg bid and Zith 250 bid. I was on half of that dose for a little over four weeks and was on the full dose for three weeks and two days.

When I saw my llmd last week I mentioned the ear ringing but it wasn't as intense as now. He didn't think it was due to the zith, because zith is only supposed to be ototoxic at much higher doses. He thinks it's the lyme. Which maybe it is but I'd be more inclined to believe that if I was on a med that wasn't known for this.

Thanks for the med recommendations--I was kind of hoping he would just switch the zith to biaxin. It's just so tiring--I don't want to have to be the one to figure out what my meds should be. Isn't that what I'm seeing him for? Don't get me wrong, I like him very much I just wish this had happened differently.

I don't know, maybe I do need a break. Maybe I need to go to med school so I can be my own doctor. Would probably end up costing me the same as lyme treatment anyway. [Wink]

Do they let you have naps at medschool? [Wink]

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Geneal
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I had to go off zith due to ear ringing.

My LLMD replaced it with biaxin.

It may take two or three days for it to get out of your system.

It has a long half life.

Hugs,

Geneal

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katieb
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Niere,

So sorry if I upset you. I was just trying to help with my own experience. Wish you the best in getting better.

Posts: 71 | From milford, connecticut | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Niere
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Oh my gosh katie no! I'm sorry if I what I said came off wrong--I was voicing my frustration with the situation, not with you!!!! Thank you for sharing your experience with me! I'm glad that your ear ringing did get better and it helps to know that if it comes up again there have been people who have had it and it's disappeared. Were you on zith when it started? Again--I'm sorry if I came across as directing any of this towards you, it wasn't meant that way. You were very sweet to reply. [Smile]

Geneal--yes! That was what I was hoping for, that he would just say "okay, let's switch to biaxin." Glad your ear ringing went away. I hope I can tell you in a few days that mine has gone too. [Smile]

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katieb
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Apology accepted, just got the feeling that I upset you. I know you are frustrated. I had ringing in my ears so loud for the longest time. I feel your frustration. I never took zith, but it did happen on all the abx I was taking. Bioxin, Ammocillian, Tretracycle, Doxy. It's has been about five years of treatment and the ringing has just got better. Hope things get better for you. Peace
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Lymetoo
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"Have abx, will take them" is my motto!! [Wink]


============
Atheana,

What is moxcycline, pray tell??

--------------------
--Lymetutu--
Opinions, not medical advice!

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Niere
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Well, I've given this a lot of thought and I've decided to go off the antibiotics--for now. It's not what I really want to do but if staying on them means I have to stay on the zith, I'm not going to do it and I really don't want to have an argument with my llmd over it. That's not the type of relationship I want to have with him.

Believe me, I've had my fair share of "words" with doctors, and I'm not afraid to stand up for myself (just ask my husband! [Big Grin] ) but I think taking this brief break is the right thing to do. I hope it is. Only time will tell.

I did call the office and moved my appt. up a week earlier, so all in all I will only be off meds for four weeks.

I plan on using that time wisely. I plan on using that time to start detoxing and looking into herbal protocols. I've also had a lot of issues come up since I went on the Ceftin/Zith that I've never had before, such as bladder/kidney/ovary issues. If I don't have any issues with that over the next four weeks then I will know that those issues are part of my herxing and getting well process.

This llmd also says he periodically takes people off meds to see where their baseline currently is. I thought that would happen further down the road, but I'm willing to sacrifice four weeks of no treatment if it means getting treatment that isn't going to affect my hearing.

Could the ear ringing be a herx? Maybe. I would have chalked it up to that and stayed on treatment if an ototoxic med hadn't been involved. But it was, and so here I am.

I do want to try to stay with this llmd--I can't say switching hasn't crossed my mind but I don't want to jump ship at the first bump in the road I have. I want to give this doctor and his treatment a chance. I know he's well-respected and has helped many.

In any event, milk thistle, here I come! [Smile]

And thanks again for the replies everyone--they are greatly appeciated. [Smile]

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mtree
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ok....Neire...

hope the next four weeks are smooth sailing for you......
its good you were able to bump up your apointmant too....

thinking about ya.....
[Smile] mtree

--------------------
worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
   

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