posted
Six weeks ago, I had a serious adverse reaction to one 500mg dose of Levaquin, one of the fluoroquinolone antibiotics, and it's made treating my lyme seem like a walk in the park. It's been one wild ride, unlike anything I've ever felt and it's not over yet, but, luckily, I am very slowly improving and hope to make a full recovery.
Now, I'm not saying that you would react the way that I did, but I would like to caution you about taking any fluoroquinolone antibiotic, especially knowing what I know now after having my reaction.
I also understand that all drugs have side effects, but these seem to carry some of the most severe and long lasting, sometimes permanent. I think most people only think of them causing problems with your tendons, but, just as bad, if not worse, they can also severly affect your central and peripheral nervous sytem, which is something none of us lymies need anymore problems with, for sure.
I don't think they are very effective against lyme, but mainly bartonella, when it comes to tick borne infections. Sadly though, I developed pneumonia and was given Levaquin, even when I expressed my wanting a safe antibiotic, due to my herxing and being medication sensitive. So now, here I sit, suffering needlessly and having to delay my lyme treatment, when some other antibiotic could have been used. Yes, I was sick, but nowhere near in a life threatening situation.
In my opinion, these drugs should never be given, except in very life threatening circumstances and in my case, I would rather die than take another one ever gain, yet doctors are giving them out like candy. I have to wonder how many people that take them and have an adverse reaction even realize that's what's going on, as oftentimes problems with them can show up later on, even after the drug is discontinued. I also worry that lymies that are given these drugs may believe that they are herxing when they take them, when what they are really experiencing is an adverse drug reaction, which could be harming them even more. Add to that the fact that you'll be hard pressed to find a doctor that will admit that they could even be the cause of your problems. Luckily, I had an immediate reaction, but, with others, it can build on itself and while some reactions are temporary, some can be permanent and life altering from even one dose.
I care for each and every one of you like family now, so I merely wanted to share what I now know about them, in hopes that you might be spared the same horrific side effects that I'm still experiencing now. You all have already helped me so much, that I just wanted to give back.
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Long post, but I still don't know what exactly happened after Levaquin?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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It's been amazing the number of replies that I've gotten there, which have been from people just like me who have experienced the exact same thing. I won't post all of them here, but if you go there, you can look them up under "Please, Please, Please everybody help me!!!!", which was my original post.
Just in case you can't get to my original post there, here it is...
I took one 500mg Levaquin pill about 6 weeks ago. Without going into a lot of details of my symptoms, which I will post at the bottom and I am sure most of you are familiar with, it has been the wildest ride of my life and it's not over yet. Most of my problems seem to center around my central and peripheral nervous system.
My biggest problems right now are HORRIBLE, HORRIBLE anxiety. My stomach even feels like it has a knot in it and flip flops around so bad that I haven't been able to eat much solid food since being floxed. I can actually feel my heartbeat/pulse in it and my thinking is my autonomic nervous system is messed up. Does that sound right? When, oh when, does this get better, if ever?
Going on the notion that my GABA receptors are messed up, I find that I get the most relief from Valium and Oxycodone, but only if I take them consistently. Thank God my physician is trying to help me through this, but I am so afraid of addiction to them. How long can I expect to have to depend on these meds to simply function, mostly bedbound, at home?
What else can I do that will help this adrenaline rushing through me? Please tell me at what point this starts to get better! I think I might even be having seizures now!
To make matters worse, I have a sinus infection now and must take Zithromax to get rid of it. I am so darn scared to take it for fear that it will make me worse! Should I be?
I am in such despair that I could use all the support I can get, so please don't just pass this message by. Please tell me what you know! I am desperate for help!
Thank you so very much from the bottom of my heart! My heart goes out to the rest of you that have been floxed, like me. I am going to start praying for all of you each and every night for the rest of my life!
My symptoms: burning spine and head hot flashes feeling of heartbeat/pulse in stomach feeling of stomach flip-flopping nausea and vomiting ear pain and pressure with popping diarrhea, alternating with constipation restless/agitation - excessive bluury vision, with some loss of vision in right eye inability to sit/lie still cold chills cold hands and feet pressure headaches, including behind eyes and whole and back of head foggy/disoriented hard time staying warm depression with suicidal thoughts and crying for no reason pain headaches inability to focus/concentrate weakness/loss of strength in arms and legs shaking uncontrollably loss of appetite inability of brain and body to relax - always feel tense - very bad insomnia - very frustrating nerves in extremities - vibrate, numb, cold, sting, burn medication/food intolerances/sensitivities seizure-like episodes feeling of brain not getting enough blood/oxygen with swelling abnormal, excessive fear and anxiety forced to rely on valium and oxycodone to relax brain, stomach, nerves feeling of tired, but wired - brain and body feel overstimulated excessive drowsiness/exhaustion at times stiff, sore neck benadryl and a mbien make hyper, not sleepy now soy causes fatigue, whereas caffiene and sugar cause hyperness light and sound sensitivities woke up out of sleep panicky, easily startled muscles jerk and twitch, along with pain solid food hard to digest - feels like sits in stomach a long time, leading to excessive fullness and nausea hard to socialize, go anywhere, or be around people - stimulation from leads to excessive anxiety feeling of always having alot of adrenaline rushing all started within two hours of one 500mg dose of Levaquin symptoms are totally disabling and have barely decreased in intensity over the past six weeks valium and oxycodone provide some relief, though not completely, but without them I'd suffer tremendously more rapid heart rate - hard beating 20 pound weight loss first week, 5 pounds second week, since only a few pounds
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Rifampin and zithromax is a good alternative in place of levaquin, may want to give it a try as people mormally find this more tolerable than levaquin.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Yes, I've had to be on Klonopin for a year because of similar reactions - we don't know if this is a reaction to the quinolones or to Bartonella flaring up and having to stop treatment early.
I totally relate to constant tremors, shaking, overreaction to cold, my whole spine and vagus nerve and arms, etc. pulsating like a car idling on high, increased muscle twitches, myoclonic jerking that I never had before in my two years of Lyme treatment, uncontrollable fast or slow movement of body parts - I have no idea if these are mini-seizures.
I used to think the whole body nerve burning and muscle pain from Lyme and coinfections was bad. I'd love to get back to that - I'd be so grateful. This is so much worse.
And I've had months of Achilles Tendon pain, long after the stop of quinolones.
I don't know the answer. I tried taking amino acids and supplements to regular my neurotransmitters and got worse and stopped.
One thing that's easier said than done is to try not to let the fear and thinking about it make it worse. I do find if I do lots of relaxation exercises, I feel a little better. But of course I am worried about what's happened to me and I think that kind of feeds the misfiring of the autonomic nervous system.
Like you, I just keep praying.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I just posted a new thread that was meant to be a reply to the this thread. I called it "The horrors of floxing."
Floxing referes to being damaged severely by fluroquinoline antibiotics. Yes, it happend to me and it is very real.
It's not my intention to cause a ciber-riot on this board, but I also would like to let everyone who read this post that I took levaquin for 4 months and got incredible results with no adverse reactions at all.
Levaquin for me, was the abx that help me the most with my brain fog; it was the one that snap my brain out of "stupid mode". I had done some pretty hard core abx combos before the levaquin, and they helped a lot on other areas of my body but they didn't even scratch the brain fog.
I have close Lyme friends that are suffering the horrendous adverse reactions to levaquin and I feel very deeply for them, but I believe that it's only fair and necesary to present patients with all the information, good and bad, so they can make an informed decision on their medical care.
Take care everyone, Lymster in WA
Posts: 303 | From WA | Registered: Jul 2004
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Floroquinlones saved my life. I've taken Levaquin, Cipro and Factive, virtually no side effects.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
i have been taking cipro for 3 months with very little side effects.
I am so sorry for what you have been thru it sounds AWFUL!! and it sux to be in that small percentage of people who adversely react to things---i have had to have 3 surgeries (so far) and been hospitalised many times this summer because i have been in that percentage for other outcomes. (NOT particularly related to lyme) it is really horrible.
Thanks for warning us and for letting us know some of the things that helped you.
my hope is that each day brings more recovery for you so that some day it will be a mere memeory! trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
Yes, it is true that the percentage of people whose lives are wrecked by fluroquinolines is very small in comparison to those whose lives are helped. My husband to Levaquin just recently, but was very cautious. He ended up taking it three months and did not have the problem I did.
There is no way to know if it will happen to you. What is important to take away from this is the following:
If you start to have severe tendon pain, switch away from fluroquinolines. Don't believe it is just a herx. It is too dangerous to do so.
Listen to your body.
If I had been aware of the potential toxicity issues with FQ drugs, I would never have switched from cipro to levaquin. I would have dropped the fq altogether and saved myself probably a year in recovery.
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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