posted
I am feeling in despair. I have been treated for lyme and co-infections for 2 plus years. About 4 months ago I finally gave in and took levaquin for 5 weeks, stopped due to tendonitis, restarted for 3 weeks, stopped again because of tendonitis. Now, 2 months after stopping the levaquin for good I'm pretty sure that I've been floxed. I've had some insomnia but even worse is that I can be exhaused at night but I have this excitatory feeling in body when I try to go to sleep that keeps me awake. The only thing that helps is ativan. Also, I cannot drink caffiene at all because one cup is like I had 10, I have severe ringing in the ears and ear pressure. Also, any time I try to go back on ANY abx I get serious CNS issues and need to go off. My LLMD does not buy into the fact that I got floxed - he thinks my reactions to subsequent abx's are herx reactions. So now not only do I stil have lyme but I have all these additional symptoms. Does anyone know if there are doctors who "treat" cases of floxing. What can I do?? I feel this is very serious and I need help but no one is listening.
Posts: 90 | From massachusetts | Registered: Aug 2006
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posted
I'm really sorry if you have truly been floxed. All I can think of is to detox, detox, detox. I don't know if it will help, but it COULD!!!
I'm very afraid of the quinolones myself. They made my nerve pain go nuts. VERY frightening to think that the pain could STAY forever, so I'm not willing to take more of them, even though I need to take them for my current sinus infection.
PASS
Why not buy some chlorella and anything else to detox. Sweat through sauna or exercise, whatever you can think of.
Hang in there. It may pass.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
"floxing" is a slang term used to describe when one has been poisoned by a flouroquinlone drug (i.e. levaquin, cipro, etc). There are many cases of this either when taking the drug or delayed effects that occur once stopping the drug.
Posts: 90 | From massachusetts | Registered: Aug 2006
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posted
I wish I knew what to tell you Scottie. It seems that only floxies understand what this is really like. And most of the doctors don't believe in floxing (though there are even some doctors who have been floxed, I'm pretty sure they believe in it...) I'm in the same situation here, can't take even tiny amounts of abx without getting bad cns reactions from them. I tried last summer and havent taken them since.
There is one doctor who has written about floxing quite a lot and sees floxed patients in Indiana (?), his name is David Flockhart. I don't know he can help a lot though, it seems that time is the only healer with this thing. But many have gotten better and even completely recovered, it just might take some time.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
The world authority on levaquin toxicity is Dr. David Flockhart, Indiana University. He visits people. He rates sometimes the diverse reactions of people, making a suggestion about the time needed for recovery, that normally is measured in years. He recommends several habits and supplements. Of course, you should not take any other fluoroquinolone in your life again, if the symptoms that you describe correspond to a floxing, otherwise you risk to get permanent injuries of every kind imaginable.
Also Dr.Cohen has a knowledge, but he does not see people,but only keeps a site running (www.medicationsense.com).
It doesn't matter what your doctor think about levaquin toxicity. Probably he is a main stream physician ignorant on this issues. In many cases, that depend obviously on the amount of drug taken and personal circumstances, time can bring complete healing.
Take into account that your CNS could be fried by levaquin, and that any other substance harsh on the nerves (drugs, alcohol, coffee,..etc) can increase your symptoms or release a bad reaction on top of the existing one.
Time, selfcare and the best habits are the only solution. You might have a look at the two sites devoted to this syndrome that plagues millions of people currently.
Posts: 94 | From canada | Registered: Nov 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I was floxed. It took years to recover.
Still being treated for lyme/babs.
I have posted on this subject many times. Maybe you can find my posts and others.
posted
I took levaquin for about 10 days and got excruciating tendinitis. I took about a year for the pain from that to resolve. I swear, I felt more crippled by the levauin tendinitis than the lyme disese. Did you know it can cause spontaneous tendon rupture? You can be sitting drinking coffee and wham, your achilles tendon snaps! It says "muscle soreness" on the pharmacy warning. Bullsnort!
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I was just recently on Cipro for a bladder infection, took one 500mg pill extended release , next morning both claves were so tight, and my wrists too.
it did get a tad better but after stopping a few days later I went to do a stretch, and I heard a tear and was in sooooo much pain. Lucky for me i was at my LLMD when I did the stretch.
LLMD said to take lots of magnesium and they dont let patients take the flouroquinlones without taking lots of magnesium for weeks prior.
I seem to be ok for now,,,,,its just really scary. and kid of stinks because the abx class really works well for me.
I was on Cipro liquid for a month in 2004, didnt notice anything, but i can tell you the stuff ate thru the plastic spoon they gave me at the pharmacy. I wish I had saved it!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
I have only just seen this post and needed to let you know of my experience.
I had never been on Levaquin but got the exact same CNS problems you explain after being on AB's for a year, I started with High dosages and it got so bad I could not tollerate any dosage of AB without my CNS going wild, I personally do not think you have been 'floxed' as you call it, but could be highly toxic and perhaps have the genetic defect that stops you eliminating the neurotoxins.
For me what had happened was I did not have the ability to detox the neurotoxins from the lyme die off and my CNS became highly effected, again to the point where I could not even tollerate 1/4 pill of any antibiotic.
I changed LLMDs who noticed what had hapened immediately and implemented a strong detox protocol of CSM/Actos and detox vits/herbs - when I started the CSM my CNS went crazy I could not bare to be awake where the toxins were being drawn out of the fat cells in to the blood, so it felt like the worst herx ever. Slowly as the weeks have gone by the CNS problems are getting less and less and my LLMD will not treat me with any AB's until I have been totally detoxed.
So personally as you said before any AB was sending your CNS wild so Levaquin may have not been the cause - I would get the 5 part HLA genetic test run and get to a LLMD that reconises that you may be highly toxic as I am telling you this can send your CNS crazy.
lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Hi Riana:
I have also had these central nervous system adverse reactions to antibiotics. The longer I am on the, the less and less I can take without having the reaction symptoms. It is being over sensitized, and yes, I do believe the neurotoxins are building up and staying in the system.
Good work on your doctor's part. mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
I personnally believe that the toxic-detoxification theory might be just one guess, like any other ones.
It sounds apparently logical, and simple that toxic substances are stored in the fat cells and then can be slowly released thanks to detoxing techniques. That would practically mean that the toxic substances are just little solid molecules that irritate our CNS while they are in our bodies, so flushing them out would be the solution.
Unfortunately things are inmensely more complicated, and it is much more likely that your CNS has been damaged, like it has happened to many of us (proven through extremely specialized biopsies), and that your recovery takes place because the damaged cells start to regenerate theirselves thanks to the natural ability of any animal body to regenerate at least partially.
As it sounds that you have been truly floxed, you know that it is recommended to stay away of any detox program. Some might be innoccous to you and do nothing to speed recovery and some others would be very detrimental, so it is not worth the risk of trying.
Posts: 94 | From canada | Registered: Nov 2006
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posted
I took levaquin for one month 750 mg/day and I am off since I treat Babs now.
No adverse reactions so far from Levaquin, only good things.
Still feel sorry for the guys who had not so positive reaction.
Posts: 98 | From BC | Registered: Feb 2005
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by lymeflox:As it sounds that you have been truly floxed, you know that it is recommended to stay away of any detox program. Some might be innoccous to you and do nothing to speed recovery and some others would be very detrimental, so it is not worth the risk of trying. [/QB]
Lymeflox: It is sad to know that you had a bad experience but you or I are not qualified to give such a diagnosis, its a support forum not a diagnostic group.
What so leave the damaging toxins in the body to play havoc!!!!!!!!!
My advice would be to get a LLMD who understands how to detox correcty and what side effects you will experience along the proces and to help you through calming you CNS whilst it heals its terrible as you draw the toxins out of there comfortable beds and they hit your CNS but it gets better, the toxin load decreases and the CNS irrability decreases - In 6 short weeks and with the guidance and support of an excellent LLMD my mobility has increased by 30%. Yes I have a long way to go but I know that not dealing with this toxin load will make me ill forever.
I understand some of you are activists for 'floxing' but again remember so many are helped by these drugs - but most of all a good LLMD will gain your trust and get you on the path to wellness, so my advice would be to find a good LLMD and listen to him/her and not the conflicting opinions on this board.
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