November 2007 I was on LEvaquin for 5 weeks and developed tendon pain so my LLMD took me off. I did get some releif from some of my Bart symptoms so a month later we decided to try Leavaquin again. Within 10 days I had pain in my knee tendons and sserious ringing in my ears but stayed on it for about 10 more days (21 days total) before I had enough and knew something was wrong. I was having headaches, some CNS irritability and just generally didn't feel well. I've been off it now for 16 days and 2 days ago started to have intense insomnia (I haven't slept a wink in 48 hours), I have anzxiety that comes and goes, I have shaking in my body, I'm tired but it feels like there is a switch in my head that won't go off so I can sleep. I'm not sure what to do and am scared to death. How long will this last! HELP!
Posted by dguy (Member # 8979) on :
Ringing in the ears from abx is often a sign of too high a dose. Decades ago it was even used to indicate the max dose. Maybe try a (much) lower dose to see how you react?
Posted by TexasChaos (Member # 7465) on :
I developed the tendon pain too and LLMD pulled me off and said "no more"!! IMHO, I don't think you should have started on it again.
I think it's a little odd that you started having all these troubles 2 weeks after you discontinued. The symptoms you describe are typical flare and herx symptoms for many people. Perhaps that is what you are experiencing?
I believe Rifampin is the next med of choice for Bart.
Posted by Areneli (Member # 6740) on :
What was your dose?
Posted by BartonFink (Member # 10818) on :
I'm really sorry to hear this. I hope it is a "just" herx but it sounds much like floxing to me. And no, its not odd that the symptoms started after 2 weeks, this is quite typical with floxing. If you already havent, I suggest you find the quinolone group on yahoogrous, you can get some support there. Those symptoms will get better sooner or later.
Posted by dontlikeliver (Member # 4749) on :
I don't want to hi-jack the thread, but if you have tendon pain once on flouroquinolones, does it mean you will get it again?
Posted by scottie (Member # 9956) on :
I was on 500 mg's a day though on the second round I went down to 400 mg's a day when I started to get the earringing. I really don't think this is a herx....I'm almost 100% sure it's a delayed reaction. Will the horrible insomnia and electrical feelings go away!!!
Posted by hopingandpraying (Member # 9256) on :
What does "floxing" mean? Just wondering.
Posted by Areneli (Member # 6740) on :
Your dose was not that great so your doc was right that he discontinued you. Lowering it even further would take away any drug efficiency.
Well, your 'floxing' will eventually go away.
Floxed means 'burnt', right?
Posted by HaplyCarlessdave (Member # 413) on :
Is 'cipro' a fluoroquinilone? When I took this I had wierd electric feelings in my joints. It was prescribed to me for a prostate infection, years ago (pre-lyme). I wasn't aware of any toxicity issues, but I wasn't a big "fine print reader" at that point.
Seeing this thread, I wondered. I did a search and found this page: http://www.fqresearch.org/teo_text.htm -- but this page doesnt have, in my opinion, a very high "believability index", if you know what I mean. But there may be others out there.
If you are sensitive to fluoroquinolones, there are very likely many other very effective abx for lyme etc. that you can try! Don't suffer needlessly! Talk to your doc soon. It's true that these drugs were probably expensive, but your health is worth more.
Good luck! DaveS
Posted by lymebytes (Member # 11830) on :
These drugs are banned in many countries for the simple reason of damage to human beings. There is a threshold of how much quinolones one can take in a lifetime, we never know when we reach that threshold, it could be with 1 pill or 1000 pills, everyone is different.
There are other safer abx choices. Floxing can occur up to 18 months after the drug has been stopped, an LD patient may believe they were relapsing when really the problem could be quinolone toxicity.
For more on this subject and to report your side effects: http://www.fluoroquinolones.org/ Click on Fact Sheet in left hand column, pay close attention to #13.
My advice to anyone before starting any abx, research it and read the label at the FDA website, then decide if it is right for you.
Posted by Lymetoo (Member # 743) on :
To those who are skeptical about the dangers of floxing (=quinolone poisoning):
If you want to know more about the devastating effects of these poisons I mean drugs, go on youtube and do a search there. But beware, those videos might upset you.
In some cases floxing is almost the worst imaginable thing that can happen to a human being. Believe me, I know what I'm talking about as do the other floxies too.
Posted by jjeennnniiee (Member # 7964) on :
Hi Scottie,
I know exactly what you're feeling right now all too well!
I was floxed with Levaquin in August of 2006!
It really felt like an endless total nightmare and pure misery for a number of months!
I truly never thought I'd live through it!
Obviously, I did though and you will too, although I know the days ahead for you won't be easy for awhile!
Like me, you will find all the support you need in order to get through it by going to the Yahoo group someone else here suggested.
A man I met on the Yahoo group was through the worst of his when I just started mine.
He came to my rescue and talked me through it whenever I needed him!
He was such a blessing to me!
I really don't know where I'd be without him!
Please hang in there!
Do not give up!
I promise you it will get better, but you will have to be very patient and persevere in the meantime!
When you feel the effects of it, just tell yourself it's just the drug making you feel that way!
That's part of what got him through it, which he shared with me, and it helped me a lot too!
You're not crazy nor alone!
You've just been poisoned with a very toxic antibiotic whose effects linger for awhile!
I assure you it will get better though, in time!
There are many others who have gone before you, including me, and are okay now!
I know it's a wild ride, but there are some things you can do to ease part of it, which I'd be happy to share with you, anytime!
I'm here to help you through it, if you need me to, as a way of giving back what I was given to get through all of it!
If you want to, please feel free to email me privately and we can even chat on the phone, if you want to.
In the meantime, I will keep you in my thoughts and prayers!
Stay strong!
Love, Light, & Health, Jennie
Posted by jjeennnniiee (Member # 7964) on :
I forgot to mention...
if you will search my posts here, as well as on the Yahoo group, around that time, you will see what I went through and how I was helped.
Posted by Chia Pet (Member # 12399) on :
Scott, I relapsed 2.5 years ago, went back to LLMD and started round of antibiotics. I did not have a clue about Bart then.
The antibiotics they gave me were NOT quinolonines, but they did bring out the Bart symptoms something fierce. I did not sleep more than an hr at a time for a full month. The tremors were unbearable, couldn't type write etc. I never had a panic attack in my life, but had those too. Bart does this to people.
It's very possible that this is what is happening to you. I'm not a doctor, and neither is anyone else on this Board as far as I can tell.
so it disturbs me when I see people making a diagnosis and scaring the bejeesus out of people.
I can tell you I had Avelox and doxy for 4 month and it helped me too, but I still suffer from Bart symptoms.
The only thing that helped me get 6 hrs straight of sleep is a small dose of Klonopin. Started at .50 mg at night,/ .50 during the day in the beginning. Now I take just a .50 mg at night.
I also occassionally take naps during the day too. I use Amantilla (from the Cowden protocol) nutramedix web site and it helps me relax enough to do so, or it just takes the edge off.
I use B complex for the neuro stuff and tingling. helps alot.
I hope to take Rifampin next to see if I can get mine more under control.
Good luck to you.
Posted by sixgoofykids (Member # 11141) on :
I took Levaquin and a few days into it my knee started hurting. I called my LLMD. He said he had never had anyone develop tendonitis from Levaquin that started in the knees, that he thought it was a herx.
We watched it for the next week or so, and the knee pain went away.
I have terrible insomnia from the bart, so it's possible that the Levaquin stirred it up enough to cause it to flare .... so many of your symptoms sound like bart symptoms.
Levaquin was a miracle drug for me ... though I know it doesn't work for everyone. I herxed on it for six weeks, then had steady progress.
Posted by lymeflox (Member # 10543) on :
Chia Pet:
Avelox is a fluoroquinolone, and a quite toxic one.