Laura’s Recovery Story – Levaquin Toxicity

*The following is an individual’s story of surviving fluoroquinolone toxicity. It is not medical advice. Please see the disclaimer at the bottom of the story. Thank you, and please be cautious with all treatments. 

Laura posted her story on Facebook.  It can also be found on the Facebook Fluoroquinolone Wall of Pain.

After reading Joe King’s post I feel I must post my 7 year status a bit early. I think it will give some of you some hope about feeling better down the line, although it may take some time. But, the good news is that today, at age 63, I feel healthy, vibrant and am enjoying life, with few lingering symptoms. According to a chart that I saw years ago I would have been classified as having a moderate reaction.
This is long!

Laura Age 56 when floxed
September 1, 2006 completed 5 days of 500mg Levaquin

On day 5 of my Levaquin I began having intense shin pain. I called my doctor (not the doc who had prescribed it at Urgent Care) and she said to stop it immediately. The shin pain continued through September. Other than a strange rash, and headaches, the rest of the symptoms did not appear until January, four months later. In January and February I had a CT Scan (as my rheumatologist thought I had cancer), MRI (as my Neurologist wanted to rule out MS) and nerve tests in my legs. All negative except the peripheral nerve testing showed that I had damage. The following is a list of the symptoms I had. The only lasting symptoms are the muscle twitching in my legs (occasionally) and burning on the bottoms of my feet (occasionally). I am currently in a mild cycle after 6 months of NO symptoms, but I only have those two symptoms.

These are the symptoms I had beginning January 2007:
1. Muscle twitching in legs
2. Muscle cramping in toes and ball of right foot – and when this happens I also simultaneously have muscle pain/twitching in jaw/face area or sometimes hands/fingers as well as palpitations.
3. Pain in toes and feet (like arthritis)
4. Palpitations when I have certain muscle spasms (toe/face/chest)
5. Rash on arms in September/October – non-itchy, raised red, sporadic
6. ‘Bulls Eye’ rash 1-2 times; easily bruised
7. Tendonitis in Achilles, hip, shoulder, neck – tendon/muscle pain in various parts of body; never had a tear.
8. Shoulder pain (almost gone) since September 2006 – just below rotator cup
9. Hip sciatica (diagnosed by Rheumatologist) (pain in both hips when walking); I occasionally still get this but it doesn’t last long.
10. severe neck and spine pain for about 4 months; could not lift my arms up or turn my head to the side.
11. Inner anxiety – often coincided with heart palpitations; I could not
12. Headaches in Sep-Dec 2006
13. Restlessness: whole body feels like it is ‘electrified’ ; I could not relax at all. Would just walk around the house, get up and down. Ativan helped the most for me.
14. panic attacks (Neurologist called them ‘neurological attacks’
15. Vibrations – felt slight vibrations all over my body
16. Discomfort in lower jaw, face area
17. Discomfort/burning in esophageal/chest area
18. Undefinable sensations (dysthesias) throughout body, but mainly in legs, arms, head – feels like the tingling sensation when you are driving and you suddenly go down a hill or how your skin/body feels when you have a fever or flu. (this once came on suddenly from the waist down with lightheadedness – it was a very strange and scary sensation). Sometimes these feelings are overwhelming and I can’t sit or lie down. These feeling in my head were extremely frightening.
19. Lightheaded feeling, especially if I change position to sitting up or putting my legs up. Putting legs up increases muscle twitches, discomfort.
20. Esophageol discomfort – slight burning; feel like I can’t swallow
21. Feeling I can’t get enough air into my lungs; can’t take a full breath
22. Head pressure, like my ears need to pop.
23. Appetite ranges from nausea to starving – sometimes together – sometimes changing within an hour or nausea lasting several hours/all day.
24. weight loss of 17 pounds from January –May 2007. Have gained 12 pounds back and am now at a normal weight
25. Dizziness with nausea – waves, fluctuates.
26. Chills – very cold with cold hands and feet
27. varicose veins around ankles
28. itchy over many areas of body
29. At night – feeling like I am going to die when I wake up with sudden, strange muscle twitches or body sensations; electrical jolts and sudden sitting up with difficulty breathing.
30. Off balance and dizzy
31. Mood changes (much less now) – beginning Feb 2007 – 1 day I am VERY happy and the next sad (feel like crying).
32. Crying jags (3) for no apparent reason. Feel better after.
33. Lots of energy most days with intense anxiety and a need to be active. Could not relax for the first two years. Had to use Ativan to relax/sleep.
34. Stiffness/
35. Intense brain fog and short-term memory loss; at one point I was forgetting everything within a couple minutes of it being told to me.
36. soreness in my knees, Achilles, shoulders, hips; popping of joints.
37. Shooting pains (feet, knees)
38. Patches of skin very sensitive to touch.
39. Burning soles of feet
40. Anxiety – overwhelming feelings
41. Tender areas on scalp
42. 3 months of daily intense heart arrythmias in May-July 2008 – 2 to 5 hours per day every day. Did an event monitor which showed the events, but just benign Premature Ventricular Contractions, Atrial Tachycardia and Ventricular Tarchycardia. Only had Premature Ventricular Contractions prior to Levaquin. I was referred to an electrical cardiologist who wanted to do ablation surgery but the problem was too close to the heart’s pace maker. So, I didn’t do the surgery, thank goodness as all the palpitations just stopped; they have reoccurred periodically but never at the same intensity. I rarely feel them anymore; most likely back to pre-Levaquin.

Supplements:
Mg = 600 mg
Ca = 1200 mg
Potassium
Zinc
GABA
Multiple vitamin/mineral supplement
Fish oil or omega 3 (alternate days) (switched to flax seed oil due to the possibility of antibiotics in the oil)
Co Q10
Valerion
Lemon Balm
Chinese Herbs
Probiotics
GABA
Co-Q10
L-Carnitine with Alpha Lipoic Acid
B vitamins

Meds:
Ativan as needed at night to sleep – .5mg December – 1 mg beginning Jan 2007 through November 2007. Occasional use only after November 2007. Ativan has helped the most of anything. I can feel my symptoms (all of them) ‘wash’ out of my body after I take the Ativan.

Acupuncture – ??? I think it helped, but I would always feel worse for a day or two, then a bit better. My neurologist thought it would be helpful.
Massage – helped, but only gentle massage
YOGA – helped a lot! Began March 2007

What has helped the most?
1. magnesium
2. good diet – mainly vegetarian now except when I trust sources of beef – no more chicken or turkey for me. I eat tuna, organic eggs, yogurt, milk, cheese with no problem.
I know that food with antibiotics will cause symptoms (used to think it might just be in my head). I was on a cruise a couple years ago and I was told that all the fish was wild caught. I ate a fish dinner and that night I had the muscle twitches in my legs and the burning feet and anxiety. I thought it was just the trip. The next day the Food Service Manager came to find me to let me know that all of the fish was farmed.
I am currently on a no sugar, gluten free, alcohol free, dairy free diet as a cleanse; I do this every once in awhile.

3. yoga (when I was ready)
4. exercise – walking and elyptical at the gym

At two years out I felt I was at about 75% recovered. I could do most everything I did before I was floxed. Cycles usually lasted 1-3 weeks with unknown cause. At four years out I felt I was 90% recovered and now at 7 years out I feel that I am 95% recovered. In fact, I had about 6 months with no symptoms whatsoever, except lingering shoulder tendonitis. But then, about a month ago I started a cycle of burning feet and tingling in my legs; it’s not that bad so I just ignore it. About 1 month ago had success doing light upper body weight again. I had tried several times during the past few years but always ended up with tendonitis.

I am hopeful that each of you will find some sort of recovery, and that many of you will find substantial recovery. It does take time. Don’t give up hope!

** The story above is truthful, accurate and told to the best of the ability of the writer. It is not intended as medical advice. No person who submits his or her story, nor the people associated with Floxie Hope, diagnoses or treats any illness. The story above should not be substituted for professionally provided medical advice. Please consult your doctor before trying anything that has been mentioned in this story, or in any other story on this site. Please also note that people have varying responses to the treatments mentioned in each story. What helps one person may not help, and may even hurt, another person. It is important that you understand that supplements, IVs, essential oils, and all other treatments, effect people differently depending on the millions of variables that make each of us unique. Please use appropriate caution and prudence, and get professional medical advice.

20 thoughts on “Laura’s Recovery Story – Levaquin Toxicity

  1. holofcb January 3, 2014 at 7:45 pm Reply

    Thanks for your story. I’m glad for your recovery!
    One question about the symptom “Esophageol discomfort – slight burning; feel like I can’t swallow”.
    How long did it last and what do you think helped? I’m having this burning every single day 😦

  2. frankthetank831 February 18, 2014 at 6:44 am Reply

    Hello there, 22 year old male dealing with cipro poisoning, currently the only symptom I am experiencing is head pressure along with mild headaches, how long did symptom last, and could it be possible to develop intercranial hypertension cause of this?

    • jimmy May 8, 2014 at 11:07 am Reply

      hi frank, i’m just wondering if your headaches went away? i was floxed many months ago but recently began to have headaches–especially when i wake up in the morning. i accidently hit my head and had terrible ones for several weeks, but they are no long that bad. but they had started before i hit my head. how are you doing? how much cipro did you take and for how long? and did you take generic or brand? thanks.

  3. Austin March 1, 2014 at 11:37 am Reply

    Did anyone ever try to diagnose Lyme disease for you? The “bulls-eye rash” caught my attention as one of your symptoms. Seems like every MD wants to blame Lyme, Fibromyalgia, MS and won’t acknowledge the side effects of fluroquinolones.

    • Lisa Bloomquist March 1, 2014 at 5:36 pm Reply

      The symptoms of chronic Lyme and FQ poisoning are very similar. Both are real. People with chronic Lyme seem to think that everyone who is suffering from FQ poisoning is actually suffering from latent Lyme and everyone with FQ poisoning seems to think that those with chronic Lyme are actually floxies. :p It’s amusing. Both are real. There is an awful lot of overlap between the two conditions – in symptoms, treatment, etc. Both are real though, and they can occur at the same time within the same person. With both, the traditional medical establishment has no clue how to “fix” those who are chronically suffering. With Lyme, at least the issues are caused by spirochettes so bacteria and ticks can be blamed. With FQ toxicity, the blame lies clearly with human error, negligence, ignorance, etc. Rather than looking in the mirror, MDs want to blame anything else – spirochettes, viruses, bacteria, biofilms, and worst – the patient. Nope, doctor, this multi-symptom chronic illness epidemic isn’t due to anything other than YOU.

      • Chris April 9, 2014 at 8:25 pm Reply

        Thanks Lisa for all your thought and care on floxing. Your site is very positive and articulate and I’m sure you have helped a great many people.

        On the Lyme/floxing topic, can you describe whether you have observed any symptoms of floxing and Lyme that are actually exclusive of one another? I’m one of those mixed-up symptom-and-test people.

        After two courses of Levaquin and one of Flagyl in 2013, and warning signs of mild gut distention and occasional vision blurs, I developed symptoms of Lyme and floxing late in 2013 after running a marathon: heart tics, anxiety attacks out of nowhere, vision problems, tremors, limb numbness and tingling. After enduring the usual rounds of neurological tests, a naturopath suggested I be tested for Lyme. The results were positive for antibodies in general, and ambiguous on the Western band. As a consequence, I have several MD’s telling me I don’t have Lyme and that I shouldn’t touch antibiotics again, and several telling me antibiotics don’t cause long-term damage and that I must start taking doxycycline for Lyme disease immediately.

        It’s a bit of a Prisoner’s Dilemma! Symptomatically, the intense anxiety and lightheadedness (with balance problems) of the early days have lessened, which suggests floxing improvement – but, joint pain, tremors, and facial numbness have proceeded, which suggests worsening Lyme.

        So, I am trying to understand whether it is even safe to take doxycycline now, because it’s always been Lyme symptoms all along – or, whether what seems to be increasing Lyme symptoms (the joint issues, tremors, and facial stuff) might just be a cycle up of floxing symptoms, the Lyme tests therefore false positives, and that I should even stay away from doxycycline.

        I have taken a test doxycycline and found that I reacted immediately with pins and needles in my hands, face, and legs, as well as with tremors and lightheadedness, but, I don’t know how serious this is. (The prescribing doctor suggested the sensations had nothing to do with the drug, which is obviously wrong if you read the chat rooms about doxycycline reactions. It’s actually hilarious that I would now describe tremors as being a reaction of uncertain seriousness, but, this is where we get to, isn’t it?) Other floxing sites (myquinstory) have said 70% of floxies take doxycycline without a problem, but, when problems occur, they are severe – so, I’m naturally a bit concerned.

        So, while I know you’re not a doctor, I wonder whether:

        1. you’ve seen any symptoms that are unique to Lyme or floxing which might me understand if I have one or both. One might be balance problems – I read of lots of floxies complaining of difficulty with balance and walking (this is true of Flagyl forums as well), and not so often on Lyme boards. There may be others.

        2. you’ve heard much about Floxies trying amoxicillin, doxycycline, or other non-fluoroquinilone antibiotics with any success – ?

        You did write that you think floxing brings out Lyme symptoms, which seems plausible… The only question then is the speediest approach to laying the symptoms to rest again – and whether antibiotics can be a part of it, as they are supposed to for Lyme.

        Thanks again for your efforts here – !! You have made this a truly welcoming place to learn.

        • Bettina October 6, 2014 at 3:05 pm

          Chris, I just recently found myself in the same position – how are you and what did you decide to do?

      • Lisa Bloomquist April 10, 2014 at 2:09 pm Reply

        Hi Chris,

        Thank you very much for your thoughtful questions and comments! To tell you the truth, I don’t feel like I have the knowledge to give you a very satisfactory answer. Please only take what I say for what it’s worth (not a lot).

        Without a certain diagnosis of Lyme disease, I’m not sure that the benefits of going on antibiotics outweigh the risks. Of course, this is a decision that you will need to make on your own and after doing research, but, for what it’s worth, I would be sure to avoid abx unless they are absolutely necessary. If you decide that antibiotics are necessary, any abx that is not a fluoroquinolone should be generally okay (they all have adverse effects, but they won’t flox you like another FQ). I wouldn’t take flagyl or macrobid first – people have had nasty reactions to those. I haven’t heard of any floxies responding really badly to Doxy, but that doesn’t mean that there aren’t any. And since one pill didn’t do very good things to you, well, please listen to your body and be careful.

        I know that the “Lymey-floxies” can tell the difference between their Lyme symptoms and their floxing symptoms, but I’m not sure exactly how. On the surface, the symptoms seem to be really similar. I think that tendon tears and ruptures are more common with floxies than Lymies, but other than that, the symptoms are too similar for our language to get past. I will ask a Lymey-floxie friend if he can help to answer some of your questions.

        Did I say that FQs could bring out Lyme? Yeah, I probably did. I’m not sure if that’s correct or not.

        All of the symptoms that you have mentioned could very well be from being floxed. They could also be from Lyme or a combination. I really wish that there was a good way to tell.

        I have heard good things about andrographis as an herbal antibiotic.

        Raw crushed garlic is a good thing to eat/supplement because it has thiamine in it and thiamine can help your mitochondria to perk up. It’s also a naturally occurring antibiotic, so it may help you.

        A few other foods that have helped me are brewer’s yeast and beets.

        I hope this helps! I wish that I had better answers for you on how to deal with the Lyme/flox conundrum. Please listen to your body and be careful.

        Regards,
        Lisa

      • Tim Featherstone July 4, 2014 at 10:18 pm Reply

        Chris! I was wondering what course of action you took since April? Did you go down the Lyme route? Have you got better or worse since April? I’m in a similar situation, I’m pretty sure it’s floxing for me but I have a suspicion of Lyme just because I was bitten last August with what I thought was just mosquitos and had mild flu like symptoms for 24 hours soon after, then fast forward to 12days of cipro in April for prostate and here I am!

      • Danny January 21, 2016 at 8:18 pm Reply

        I’ve taken Cipro and I’ve been attacked by ticks. This post sounds like my entire life for the past 7 years. Thanks for the giggle!

  4. Jocelyn March 15, 2014 at 7:43 am Reply

    Thank you for sharing your story! I was on the same dose for the same time period as you and your symptom list could be mine! I was strangely relieved to hear your report of not being able to sit and relax. I will walk around the house/work all day long and avoid sitting to relax- I just can’t! I took levaquin in Dec. 2013 so am early in the process but have seen some improvements already and try not to get scared by the long journey ahead. My question is- did your muscle twitching in legs ever go away and how long did that take? It was one of my first symptoms before the mental and tendonitis pain hit. I believe it is part of why I hate to relax as it is hard to relax when every time I sit or lie down my muscles in my legs twitch. Thank so much for your reply and story of hope!!

  5. Peter April 3, 2014 at 4:37 pm Reply

    I keep seeing all of these “recoveries”, but question what kind of a recovery they really are. Giving up meat, dairy, etc is not being recovered. I have been having symptoms for 10 months now and they get worse daily, but I have found little in these recoveries that suggests a cure beyond waiting and changing your diet. This is not a recovery, but a hope and wait and see approach. This is not helpful.

  6. Cheryl Martin February 22, 2015 at 11:11 am Reply

    I took just 1 levequin and immediately that evening I had Pinging in my ears and now and now 2 weeks later I have a constant pinging g tingle in my head and my face is numb..i have been to my regular doctor and ear nose and throat dr. I am really scared because the sound In my head won’t stop and keeps me up. I want to be refered to a neurological doctor. I only took one:(

  7. Kate March 12, 2015 at 1:43 pm Reply

    I was on Levaquin for severe bronchitis. Soon after I developed balance issues mostly occurring from sitting to standing. It’s as if I have to walk to my right but I’m not telling myself to do that. Terribly strange sensation. BP seems to be running low also.

  8. seager May 25, 2015 at 10:53 am Reply

    Hi Lisa
    I have been floxed I am sure of it now. My most major symptom is shortness of breath, anxiety, facial pain in jaw, twitching muscles. Can you please tell me when your breathing got better?

    • Kyle February 16, 2017 at 3:42 pm Reply

      Seager, did your shortness of breath every go away? If so, how long did it last exactly?

  9. tom December 14, 2015 at 6:57 pm Reply

    mental fog after cipro therapy is actualy the same as chemobrain after chemotherapy – memory and cognitive impairment

    • dan hedrich December 15, 2015 at 5:16 pm Reply

      peter are you still out there? dan. plesase respond

  10. Virginia May 5, 2016 at 7:13 pm Reply

    I’m a Lymie-Floxie, so know something about both. The bull’s eye rash is classic for Lyme: as far as I know, it is 100% indicative of a tick-borne infection. You need to see a Lyme-literate M.D. for proper testing (with IGeneX labs; the regular tests miss half the cases) and treatment. Long-term antibiotics will probably be needed. I’ve tolerated all the dozen I’ve taken very well, except for Cipro!

  11. Virginia May 5, 2016 at 7:17 pm Reply

    Yes, tendon tears are classic for Cipro: that’s how I can tell my Cipro symptoms apart from the Lyme ones. Other symptoms can overlap, like peripheral neuropathy: classic for both Lyme and FQ toxicity. If you are positive on any Lyme antibodies, assume you have Lyme and get treatment soon. The longer one waits, the more Lyme digs deeply into your body; It is hard to eradicate, but can be cured. After 3 years on oral antibiotics, I was pain-free for a year with Lyme, until I was given Cipro!

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