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» LymeNet Flash » Questions and Discussion » Medical Questions » LEVAQUIN...I don't know what to do! Any help appreciated...

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Author Topic: LEVAQUIN...I don't know what to do! Any help appreciated...
LymeFighter
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Hi Everyone,
I just started Levaquin 6 nights ago. Some of you may have seen my dramatic post from a couple of days ago about how I was suicidal.

I read that Levaquin can cause suicidal thoughts in some rare cases. I read about the tendon pain and everything.

I told my LLMD about my pain and how it is increasing and it is also localized in my right knee to the point where I cannot put weight on it.
LLMD said he was still convinced that I am having a JH reaction and not a side effect from the Levaquin.

I am not so sure I agree with this...as the pain is getting more severe and my entire body is killing me. My bones are cracking and my vision is blurry. I have severe eye pain and headaches from starting on this med.

I was just hoping for some help and advice from anyone who has been on, or is on Levaquin. I am trying to decide whether or not I should call my LLMD again and sort of demand to "please try a different med"...?

ANY HELP WOULD BE GREATLY APPRECIATED!
Thank you to all in advance!
~LymeFighter

--------------------
"...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton

Posts: 21 | From Northern California | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
liz28
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I couldn't tolerate it, either. My whole body got mack-truck sore, and my stomach was shredded. Rifampin did the trick instead, but it also has side effects.
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bettyg
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HI LF! I hope you STOPPED taking it per our instructions to you! Go by the advise of those who have taken it; I have NOT.

Was hoping it would be going a little better for you now than the other night.

Iceskater told me by PM she would be in contact with her. She's lost a lot of her eyesight, so ask her sight questions since she's seen the BEST eye specialists there are this past year ok!

Hang in there; we're riding the awful ride with you with support, our personal wisdom, and faith in God...knowing someday; we'll be better or in permanent REMISSION!
Bettyg [group hug] [kiss]

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LymeFighter
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Thanks guys! I'm going to call my LLMD tomorrow and request a different route...possibly the Rifampin (spelling?).

I just don't think it's worth this kind of agony and possible risk of blowing out a knee or tendon. There has to be other drugs that can successfully ttreat the Bartonella Hensele (sp?).

Anyway...I'll update you guys when I hear back from my LLMD...for now NO MORE LEVAQUIN! YAY I made a decision after chatting with a bunch of you guys all day today!

Thanks again and take care...we are all together on this awful roller coaster nightmare of a disease! Thank goodness we have eachother!

[group hug]
~LymeFighter

--------------------
"...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton

Posts: 21 | From Northern California | Registered: Jun 2006  |  IP: Logged | Report this post to a Moderator
Aniek
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Lymefighter,

Tell your LLMD about the suicidal thoughts. Even if they are a herx, it's a herx you don't want to have.

Cracky bones and blurry vision sound like a herx. But a herx can be too much.

If it makes you feel better, I took 250mg of Zith 6 hours ago and want to rip my joints apart right now. Solidarity in pain. [group hug]

-Aniek

--------------------
"When there is pain, there are no words." - Toni Morrison

Posts: 4711 | From Washington, DC | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
david1097
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Vivid dreams, severe depression and suicidal thoughts are rather common with herxhiemer reactions with Lyme. Suicides have been reported during such reactions. If you know that this is a normal reaction, you can try to supress the thoughts and impact of the dreams under the recgnition that this is a treatment reaction. Try to imagine that you are conducting an experiment and making observations of the reactions, as opposed to living throught and suffering from the observations, all the while remebering that if it is a Lyme herxhiemer, better times are ahead.

While levequine is apparently not very good for lyme, it still may work against some strains. Bartonela can also exhibit herxhiemer type reactions, but I don't know about the dreams and other stuff as they relate to bart. If it is a herxhiemer reactions, there should be a clearing phase several days after the peak.

Just something to keep in mind.

Still if things are very bad, I think the ussual recourse is to stop the drug until the worse problems subside.

Posts: 1184 | From north america | Registered: Feb 2003  |  IP: Logged | Report this post to a Moderator
Andie333
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Lymefighter,

I haven't tried levaquin so can't speak to that, but I've been on rifampin now for about 4 months and have seen a lot of positive results.

I ramped up the rifampin dosage slowly and the side effects I had (a screaming headache and some depression) only lasted a week.

Hope you're able to find an alternative that works for you!

Andie

Posts: 2549 | From never never land | Registered: May 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Always listen to your body! Always! .. even if this is a herx...backing off the meds even briefly can provide benefit.

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

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minoucat
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I got quite depressed on Levaquin and had severe muscle pain. No suicidal thoughts, though, and no tendon damage.

I am sure that the pain and depression were, at least in part, a reaction to the levaquin itself. My LLMD was dubious, but later said that many people had reported the same reaction as I had, and he was beginning to agree with me.

I did rifampin first for 2.5 mo, which I found was very easy to take. I then did Levaquin for 2 months (absolutely the limit of my tolerance). I seem to be completely bart free, and I'm convinced that this two-step approach was necessary for me.

I think taking the rifampin first was a good idea -- great brain penetration, plus it limited the JH when I started on Levaquin. I'm sure some of my levaquin reaction was JH because it subsided a little in the final weeks.

Getting rid of bart made a huge difference in my overall mood, cognitive function, and physical health. Just to encourage you on whatever route you take to getting rid of the buggers -- it's well worth it!

--------------------
*********************

RECIDITE, PLEBES! Gero rem imperialem!
(Stand aside plebians! I am on imperial business.)



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spiral
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the levaquin question comes up in lots of differnt discussions.
i would not let the LLMD use Levq on my teenager. the whole joint and tendon issue left me scratching my head -- if joint pain is a major condition/symptom then how do we know someone is getting well when they are taking a drug that causes the same side effects and worse. a specialist i know told me she will not use levq on any patient for any reason after seeing serious tendon and joint damage in patients who never had those issues before taking levq. it can also cause renal issues.
It is one of those drugs - that pharma companies have successfully pushed a be al and end all -- for everything -- pre-surgery, post-surgery, chronic conditions, etc. And yes -Bartonella -- but bartonella hasnt been studied long enough to know which protocol is the best for it.
i am not a physician, just willing to ask lots of good docs for answers...

--------------------
spiral

Posts: 20 | From hvny | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
spiral
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one more thing -- there are a few posts re Bart -- and they have comments about Levq...check those out!

--------------------
spiral

Posts: 20 | From hvny | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymied
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Hi LymeFighter -

I have had the same type of symptoms you are having on Levaquin, Mepron, Zithromax and doxycycline (taken at different times)...for me they were definitely herx symptoms. I had a trip to the ER when my migraine aura just kept coming back for an entire day while on mepron.

My vision would blur in and out and I was basically not functioning for four months straight while I herxed and herxed and herxed. I never plotted out my suicide but I definitely thought about it more then once. For me this was not a result of any one medication I was taking - this was due to herxing.

It was miserable and hard but after the hard herxes were over in the sixth months they started to get easier and I started recovering.

I would be careful about writing off Levaquin since it seems it may be working very well for you and creating a nasty herx. Unfortunately with these infections typically you will feel a lot worse before you will start to get better.

You have to listen to your body though. I know minocycline gave me very strange symtpoms that were very different then my herx symptoms and I listened to my body and stopped taking it. Ultimately you have to really listen to your own body and heart and what is right for you.

Of course you need to try to balance it all as well as you can and drink tons of water and support your body detoxing.

Take care...

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LymeFighter
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Thank you everyone for your support and advice!

I kept telling my LLMD how bad I was feeling and how my pain just kept getting worse and worse until I couldn't walk and he finally told me to stop taking the Levaquin.

I am only on Omnicef for now and a bunch of natural support stuff.

LLMD will hopefully get back to me soon and let me know what he is going to start me on next. His secretary said that he mentioned Amoxicillan (sp?). So we'll see...
Take care everyone and thanks again!
~LymeFighter

--------------------
"...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton

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mimi
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Lymefighter, Hi what other abx have you been on and for how long? I am asking because I am supposed tom start IV levaquin in a few weeks and was told it was the worst herx with zith.

When I asked why we did so many first my LLNP said if we hadn't my body would not be able to handle the herx. Had to kill as many spiro's as possible first.

I have done primaxin and clinda then zith and clinda since July 5. Just adding what I know I will be working doing the levaquin and zith so your reaction scares me to death. I hope you feel better real soon.


Please take care of yourself. Hang in there let us know if we can help. If you need to chat you can PM me and I'll give you my number I am not the wisest but I will help if possible. Join lyme chat Sat. it is very supportive.
Take care
mimi [group hug]

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mtgebrkr
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I have not tested pos for Bart, because I had Lyme disease and then got extremely ill years later with very different symptoms. Either bart resurfaced, I got infected by my cat, or another tick bit not sure, but I knew what was what. I begged for Bart meds. I took Avelox with Doxy for about 4 months and eached a plateu. I was suicidal before the Avelox, had near dementia and a host of other symtoms. Nightmares, anxiety all went with it. I even had hallucunations with my eyes closed.
It helped all this. Ketek and other drugs for Lyme helped me keep it back for a while, but it is coming back now that I am off meds to get my gut flora back since I got C-Diff on top of all this.
I am hoping to get Rifampin when I can go back to meds.
In the meantime, I use Klonopin at night for sleep, and it seems to help soothe the nerves and spasms/seizures I was getting from bart. I use .50mg at night. I was at 1 mg. during Bart treament, but managed to go down. I also found on Ketek that I had to reduce the Klonopin, becuase I went from insomnia to wanting to sleep all day. Besides, Klonopin is not a drug I want to stay on for life either.
But right now, its the only way I can fall and stay asleep without sudden awakedness, which I attribute to Bart more than Lyme and helps reduce anxiety which was extremely bad for me where I cried all day and night.

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