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Post by Mayleng on Jun 4, 2012 16:47:56 GMT -5
I have been suffering from tendon pain, jaw, neck, shoulders, ankle and now my right hand. And my problems started immediately after taking levaquin. So I wanted to warn people to be very careful. Sadly, I was given Levaquin for a suspected sinus infection (which I did not have) but am left to pay the price. As usual the doctors don't believe me and are not taking me seriously. video.pbs.org/video/2007003914and and www.globalnews.ca/bitter+pill/6442600583/story.html
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Post by healthy11 on Jun 4, 2012 17:49:35 GMT -5
Although examples of Levaquin toxicity were mentioned in the video, it was even more unsettling to hear that there is currently NO reliable way to track side effects and negative consequences associated with medications in the U.S. The best that's available for now is AERS, Adverse Event Reporting System: www.fda.gov/Drugs/GuidanceComplianceRegulatoryInformation/Surveillance/AdverseDrugEffects/default.htmI am convinced that my son experienced Antibiomania as an adverse response to Azithromycin, which he was also given for a sinus infection a few years ago, but just as you discovered, his doctor didn't believe it, because he'd never had any other patient with that kind of reaction to it. Fortunately, in my son's case, the symptoms subsided after he stopped taking the antibiotic. I hope yours improve with time, as well. Still, without a uniform notification program, incidences like these seldom get reported, and more people may have problems because the risks aren't well-documented.
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Post by dwolen on Jun 5, 2012 9:20:38 GMT -5
Levoquin for sinusitis is sort of over-kill. Levo should be rserved for pneumonia, in my opinion, and in the opinion of the antibiotic "bible", Sanford's. It is a guide that is published yearly, and has studies backing up all the recommendations. Sorry you have had so many difficulties. We are supposed to report adverse medication reactions to the FDA.
Many people have a firmly held belief that they "need" antibiotics for sinus infections. Over 90% of viral infections of the upper respiratory tract, including colds with fever and headaches, demonstrate a VIRAL sinusitis. People are correct when they have a cold, their sinuses do hurt, but the sinusitis is due to the upper respiratory virus. Antibiotics do nothing for respiratory viruses. The proper treatment for most cases of sinusitis is T-I-M-E, and possilby some palliative remedies to make one feel less pain and discomfort, like ibuprofen, honey for the cough, cough drops, rest, gargling. Bacterial sinusitis is very unusal, even after 14 days of symptoms. A large clinical trial treated pts with sinusitis sx with either antibiotics or placebo, and there was NO difference in outcomes nor in the time it took for symptoms to go away.
It would prbablybe hard to find anyone who complains more loudly than I do when I have a cold. I am such a Kvetch when I am sick with minor things. But I try to remind myself that I have an immune system that will cure my cold.
My weekend job my 2nd job) is at a retail pharmacy chain's clinics (walgreen's). Most of the people who come into these clinics have colds, but they are looking for me to write a prescription for them because they suspect they have strep throat or bacterial sinusitis. I don't want to write the prescription for antibiiotics,and most of the visit is spent with me explaining why antibiotics are not needed. Often people accept what I say. Recently, though, a woman with 3 kids all under five and a full time job had big tears because I would not prescribe antibiotics, and she begged me for the prescription. It is difficult, let me tell you. Iam supposed to improve pt satisfaction, the patient is begging me with tears and I have a professional obligation to follow science in my treatment planning and prescribing.
If one goes to an ENT specialist for just about anything, the first thing done is to prescribe a month of broad spectrum antibiotics. So, I think they perpetuate this. THis happened to me for my complaint of a long term decreased sense of smell. I did not think I needed the 4 weeks of abx, but I took it dutifully.
With my HIV/AIDS patients, who havecompromised immune systems, I am more likely to prescribe antibiotics for sinusitis of more than 14 days duration. Sinusitis and chronic sinusitis has been well described in AIDS patients, so I feel I am on stronger ground here.
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Post by bros on Jun 5, 2012 9:30:40 GMT -5
My doctors usually give me antibiotics (usually a 5 to 10 day supply) whenever I am ill, because they don't want whatever I have to spread down to my chest and cause asthmatic bronchitis, which has been known to last up to 3 months in me
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Post by Mayleng on Jun 5, 2012 10:27:21 GMT -5
The sad part was, I did not have sinusitis and went to see my regular doctor before he sent me to an ENT. I had facial swelling & I lost my voice, I went to my doctor which started this whole nightmare when he sent me to the ENT. They never figured out the reason for the facial swelling.
Healthy, incidences like mine cannot be reported when the doctors refused to believe me and have no idea how to treat me besides telling me to take Motrin which does not help, 4 months of PT did not help my neck and shoulders either. I am very cautious about any physical activity now as I don't want to have any tendons rupture. My rotator cuff hurts when I reach back, so I know I am at risk of tearing it. My jaw is never relax and is always tensed and achy. So as of right now, I just live with the pain and pray that it does not get any worse although, that has not been the case. Recently, my hands have started hurting as well. Seems to be moving thru' my body.
I posted about my neighbour Amy on another post who had been suffering from a very painful Autoimmune disease, well she had a sinus infection last christmas, and her doctor prescribed Levaquin to her. Luckily, her mom and I were attending our neighbourhood Christmas breakfast and I had mentioned my problems with Levaquin. Her mom immediately checked on the side effects and was horrified that her dd's doctor would even prescribed Levaquin for a child who was already suffering from so much pain that she could not even get out of bed on some days. Luckily she had not given Amy the levaquin as yet and called the doctor to change the antiB. She just told me another friend of hers was also prescribed Levaquin for a sinus infection and did not take that because of my story. I am very upset that ENTs are prescribing Levaquin for regular sinus infections, as dwolen mentioned it should be given to pneumonia patients not dispensed for every cold, sinus problems etc. Even with the blackbox warning, the doctors are not getting the message. Which is why I wanted to post this to warn people. If you just goggle Levaquin you will see lots of lawsuits, if you Youtube it, you will see lots of people suffering from it. It is scary and speaking as someone suffering from Fluoroquinolone toxicity, it is really depressing living with pain every single day, and have doctors not believe you. There is NO CURE for it, sadly.
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Post by dwolen on Jun 5, 2012 11:38:28 GMT -5
bros, from reading your posts, it seems to me that you are very careful in your selection of doctors. So, I am not questioning your physician's practice, just speaking generaly.
Mayleng, I am sorry that you are suffering so. As a result of you raising this issue and increased awareness of the interaction between cipro and bone metabolism, I have been prescribing more nitrofuritoin for simple UTI's rather than 3 days of cipro.
Any time a medicationis prescribed, the prescriber (eg,me) needs to weight the benefits vs the risks. I share this considertion with my patients, especialy when they complain about having to take another pill.
Additionally, with more research, thinking changes about what is the best thing to do. For example, the American Heart Association has preached low salt use for decades, and so have I. Recently I read that 2 studies, showed people who eat low salt diets have higher rates of death. An article in the Sunday NYT discussed that the evidence behind the low salt guidelines was thin, but it was the only evidence available, so the AHA used it for the guidelines decaids ago. Now, medical folks like me are so emeshed in the "low salt" subculture, that it feels shocking to consider letting go of this belief. Sometimes pts throw up their hands and say, see, the doctors don't know what they are doing...but evidence and information does evolve. It is hard, as a consumer of health care, to sort through all of this. Generally, lots of viral respiratory infections are capable of inducing reactive airways in those prone to asthma, and there is some evidence that some folks without asthma sometimes get bronchispasm with colds, temporarily. What I do, and what I believe the evidence says for me to do is to start or increase the use of inhaled steroids and monitor the peak flow at home, adding albuterol if needed for a decreasing peak flow reading. That's what I do for my asthmatics who have colds that are settling in their chests and have a decreasing peak flow. Bacterial bronchitis is pretty unusual, and is sometimes seen in patients with emphysema. Ihave one patient on 24 hour oxygen for emphysema, and I am pretty liberal with the doxycycline and amoxicilin or augmentin when her phlegm turns yellow and her cough increases. But with everyone else, I am pretty strict and need to see evidence in "black and white" like a positive strep cx. (Sorry about going on and on about this, it may not be very useful for me to post about my clinical practice!)
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Post by Mayleng on Jun 5, 2012 11:50:00 GMT -5
dwolen, I am sure you practice care when you prescribe the meds, unfortunately not a lot of healthcare people do. I have had so many Anti-B thrown at me it is not funny. I think meds like Levaquin/Cipro have a place, but the doctors really have to weigh the pros and cons before prescribing it. As I mentioned in my case, Amy's case and her mom's friend's case, they were being prescribed for cases of sinus infections (suspected in my case), the risks were much higher than the benefits (if any). My sil, who is a nurse, told me they don't prescribed levaquin except for double pneumonia patients.
I have a feeling these doctors are not reading the prescribing info (as has been confessed to me by my son's Peds), when I question him on why he prescribed one med over another and why he prescribed strattera not according to the prescribing info when my son started it. I, of course, showed him the info directly from the box he gave me, and told him how I would like to go about starting it and why. But really, is it my job to do this? I have been so careful with everything I put in my kid's mouth when it comes to meds but forgot to do it for myself. sigh! This one "mistake" on my part, has long term consequence for me that I will never recover from (from all the research I did). I have ended up with tendinosis and it will probably continue to attack the rest of my body.
People now need to ask a lot of questions before they take any meds and to do due diligence and check out the side effects etc online (now that they have this tool) before they take it or give it to their family.
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Post by bros on Jun 5, 2012 14:13:34 GMT -5
bros, from reading your posts, it seems to me that you are very careful in your selection of doctors. So, I am not questioning your physician's practice, just speaking generaly. Yeah, i'm more careful than most in my selection of doctors. Although I HAVE experienced adverse side effects though. Had full body muscle and joint pain from Lamictal. Doctor insisted that it was impossible and had me suffer through pain for a week while I got tested for Lyme, JRA, and a bunch of other stuff. Turned out it was a reaction to the Lamictal.
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Post by hsmom on Jun 5, 2012 18:32:34 GMT -5
Mayleng,
I am so sorry to hear of all your pain. And, thank you for posting this. I was prescribed Cipro for UTI many years ago. Fortunately, I don't think I had any adverse effects, but it's frightening to know that I wasn't told anything when the doctor prescribed it.
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Post by Mayleng on Jun 19, 2012 12:25:23 GMT -5
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Post by dihicks6 on Jun 22, 2012 13:15:44 GMT -5
Awww, Mayleng, I hope you get some relief soon! Have you tried the natural remedies? Some of those people at those kinds of stores are a wealth of knowledge!
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Post by michellea on Jun 22, 2012 19:38:55 GMT -5
Mayleng - I hope that you are able to keep your symptoms at bay. Reading some of these links is very frightening. Thank you for sharing - I will be more vigilant when my family is prescribed antibiotics. We have a history of penicillin and cephalexin allergies - it makes me think that the fluoroquinoliones might be prescribed as alternatives in some cases. I will pay close attention and ask many questions.
Please take care.
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Post by dwolen on Jun 23, 2012 7:43:25 GMT -5
Mayleng, I hope you are able to find some sort of relief, therapy or remedy for your symptoms. My cyber impression of you is that you are a highly functional person, someone who does a lot of things out in the world. It is sad to think that you may not be able to function as you please. Just a few ideas: I wonder if complementary and alternative medicine might be options for you to get onto the road to recovery? My dd is into Reikei healing, and several of my friend nurse practitioners have also become Reikei healing practitioners. Youdon't have to buy into thebelief system to possibly benefit from Reikei, and it is risk free. One of my NP friends (who is a Korean immigrant and western trained nurse practitioner) also attended a Chinese doctor (with herbs and accupuncture) in our Chinatown for her headaches and fatigue when her dd was an wild girl adolescent, and practiced Qi gong. Did these things help? Well, my friend is sane now, alive, and survived her dd's adolescence. And so did the daughter (doing quite well now).
In the last few weeks, there have been articles in the popular press about the research on bacteria that lives in our GI tract and skin, that helps our physiology in many ways. Perhaps as we get a better understanding of our native bacteria, folks will be less ready to prescribe antibiotics and patients will be less demanding of antibiotics. Inmy "nurse practitionerin a box" weekend job at a retail clinic, I sometimes get tears from some adults when I tell them I do not want to prescribe antibiotics for their viral sinusitis and viral bronchitis.
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Post by Mayleng on Jun 23, 2012 11:35:31 GMT -5
Thank you so much ladies. I am into 22 months of being "floxed", which is hell. But there were some successes by some of the members on the facebook group I have joined. I was so depressed I stopped looking for a while and when doctors make you feel like an idiot and crazy, it makes you just stop looking for help altogether. There is no help to be had from these doctors. I was given hope when I started my search again recently and found the Facebook support group and read some success stories and what worked, where before all I found was "there is no cure".
So I have started a mineral/vitamin regiment that has helped a few in their recovery. What has helped relieved some pain around my jaw, neck and shoulders have been Chelated Magnesium, and rubbing Magnesium oil (Epsom salt too), on the effected areas. I have also been on high doses of Vit C, D, E, B complex plus Omega 3, borage oil , acidophilus and CoQ10. The Vitamins, Omega3 & Borage oil and acidophilus are mainly to detox the body and build new cells, Magnesium to relief the tension and also to help build new cells/collegen. FQ destroys the collegen in the tendons. After 22 months of pain and tension in my tendons, it is the first time my jaw has relaxed and feel 80% normal. The shoulder and neck is better but maybe about 50%. However, it continues to ravage new areas, my right hand and especially my right thumb is now affected. I cannot bend my right thumb without pain, the tension on the tendon there is so tight it is like a tight rubber band is holding my thumb, it springs back on it's own when I bend it. I also have brainfog which I did not even connect to the Levaquin until I read the entire list of side effects. I thought it was just getting old or menopause, but it is worse than that.
I am giving my current "therapy" sometime to work, so will continue with the mineral/vitamin regiment as it took some people 20 to 22 months to get better with good and bad days, ie. it is not a linear recovery, if there is a recovery. I am also considering accupunture.
I just don't want anyone else to go thru' this. Even with blackbox warnings by the FDA, the doctors are not even bothering to weigh the risk before prescribing this. In some cases, it is like using a sledge hammer to hammer a tiny nail, if you know what I mean, simple sinus infections, UTI, etc should not be treated with this antibiotic, the risks outweigh the benefits. There are many many cases of FQ toxicity that are not reported because people have not connected what they have to Flouroquinolone, as symptoms can appear months/years later. As in my case, it is the "gift" that keeps giving. After 22 months since taking it, it is still attacking my body in new areas. So I am doing my part in making people aware.
Meantime, I will continue to keep my spirits up, there are people who have been "floxed" much worse than me and that really breaks my heart.
Oh, by the way, it only takes one dose to suffer the consequences.
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Post by Mayleng on Jun 23, 2012 15:52:29 GMT -5
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Post by kewpie on Jun 27, 2012 18:24:29 GMT -5
Mayleng,
Your story is so scary. I hope you recover very soon.
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Post by Mayleng on Jun 28, 2012 10:54:58 GMT -5
Thanks Kewpie, I have now developed a trigger thumb on my right thumb and it is now in a brace.
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Post by kewpie on Jun 28, 2012 12:15:19 GMT -5
Uh oh..how can you hold a wine glass? jk...
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Post by Mayleng on Jun 28, 2012 13:12:10 GMT -5
with great difficulty lol! Although alcohol is pretty much out for most "floxies" (people who have been floxed - FQ toxicity).
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Post by Mayleng on Jul 20, 2012 11:38:20 GMT -5
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Post by Mayleng on Oct 1, 2012 8:08:12 GMT -5
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Post by healthy11 on Oct 1, 2012 8:43:32 GMT -5
((hugs)) Mayleng. I wonder if any of the Fluoroquinolone support groups that you participate in have discussed the impacts of menopause on symptoms? I've developed tendonitis in my ankles and arm that I never had before, but I haven't taken any prescription medication in several years, so I don't think that's the problem. The timing seems more than coincidental with "change of life" and I wonder if some kind of estrogen and/or soy supplements might help?
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Post by Mayleng on Oct 1, 2012 17:59:25 GMT -5
The people in the support groups found that soy is one of the worse thing for some who has been "floxed". This is not just in women, our members range from kids to the elderly, male and female. And Tendon problems is just one of the many symptoms.
The thing about soy is that it is NOT good for you. The unfermented soy (which is in everything) is not digestible unlike the fermented ones used in Asia. Also soy is one of the top allergens. After all these years, it has been found that soy has a connection to breast cancer. The soy that is used in everything has been genetically engineered and is not good for you. I would avoid soy if I were you.
Oh, you can also find fluoroquinolones in eyedrops as well.
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Post by dwolen on Oct 2, 2012 7:29:44 GMT -5
any chance of aclass action law suit?
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Post by beth on Oct 2, 2012 7:45:16 GMT -5
healthy, I used hormonal supplements for about six months for unexplained hip pain. It cleared them up and when I went off them (found out I had a risk factor that made them not appropriate) my hips hurt. Then I seemed to recover and have been OK since.
Later I saw something about joint pain being related to menopause.
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Post by Mayleng on Oct 2, 2012 9:44:22 GMT -5
any chance of aclass action law suit? There are a few around, and we are trying to start one. However, most start with the criteria of having tore a tendon, since mine has not torn "yet" and until doctors acknowledge that symptoms can happen months/years after the fact, there is no way to win. The Pharm companies can out spend you. We just want to spread the word, to help other people avoid the pain and suffering we are going thru'. Doctors don't read prescribing info nor are they concerned about side effects, they just keep giving these very series Anti-Bs like candy. My doctor (and my support groups' doctors) all made us feel like idiots and won't listen to us even with the blackbox warning by the FDA. So it is an uphill battle. Many in the support groups have lost their jobs because they can't use their limbs, have liver, stomach, nerve, depression, anxiety and brain fog problems. A lot lost their health insurance because they can't work. This is not a U.S. problem, many of the support members are in canada and europe.
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Post by Mayleng on Oct 2, 2012 10:15:40 GMT -5
Here are more stories of what people are going through. wp.rxisk.org/flox-tox/www.facebook.com/pages/The-Fluoroquinolone-Wall-of-Pain/209182505773463 (you have to do a cut and paste on this link, I don't think you need to be an FB member as it is an open group). This was posted by one of the members on the Wall of Pain. Bear in mind Fluoroquinolones are counter-indicated for children under 18. My name is Robert, I am 17 years old,Before this i was a very healthy teen, I was very involved in school, always keeping my grades high and was on a track to a early graduation and was planning on getting into a 5 year nursing program after finishing high school, I also always have had a big passion for music and art since i was very little,growing up around many genre's of music I always felt very blessed to have herd and set fourth goals to become a musician, having learned how to sing,play guitar & Bass, made music a part of my everyday life and soon after inspired me to want to pursue plans to form a band. Aside from school and my hobbies, I have been involved in a 4 year relationship with my high school sweetheart Alycia, who this has very much affected as well,spending much of our relationship being very committed discussing after high school plans & goals, being a very important to me, this has devastated much of my plans and dreams, striking me at the most joyous time of my life, the time when all my plans were to be set into action. I often think about how my life have has ended as soon as it started. on May 25, 2012 my life was forever changed, one morning while bathing i discovered a testicular lump which soon after I scheduled a appointment with my Doctor, which I was very alarmed about this being Cancer runs in my Fathers side of the family and I was in a extreme amount of pain. after a visit with my Dr., he ruled it out as being a epididymal cyst, which he then was quick to prescribe me a round of Cipro 500mg X2 a day for 10 days. so that same I was starting my summer break out of school, picked up my prescription and headed home, I only took two of the of those poison pills!!! when i quickly noticed something was wrong, I did not know what hit me at all!! I was laying on the bed when I suddenly noticed a very odd sensation in both my Achilles tendons, as if all the nutrients had been sucked out of them and they became extremely brittle and weak, I tried a walk and felt as if they were going to snap out right beneath me, then followed a horrible feeling of every ounce of life being sucked out of my body with a very intense panic attack, I was lost on how to describe how i felt next, feeling like i was not myself,I felt like the world around me was different and dream like, but this was terrifying. for the following days i was feeling very flu like and very weak, and very scared of everything around me, like a helpless animal. After i read the package a bit more I came across some of the mentioned side effects, I very quickly started a google search on Cipro side effects and was extremely horrified from everything I read D: was very scared and till this day feel like this is a nightmare that I have not been a ble too awake from or except. A list of all my side effects from this Antibiotic are as follows; Brutal head pressure, tendonosis/ tendonitis of both my left and right Achilles, partial hearing loss too right ear, tinnitus, tendonitis of both hands and damage to many of the tendons throughout my body, my visioned is was completely riddled with hundreds of floaters of all shapes and sizes great! smell disturbances and dental problems, arthritis like pains in knees and hands/wrist, skin has lost much of its youthfulness and I look older, poor wound healing,brittle nails,severe constipation and frequent urnination, treacherous Anxiety/panic attacks with very unreal depersonalization, suicidal thoughts & ideas,depression,frequent bouts of crying and emptiness, severe mood swings, I now have peripheral neuropathy of most of my limbs, but mainly its very severe in my legs/ and knees/feet , Chronic fatigue. I am 4 months out from my initial Floxing and I have many cycles of my symptoms, all very in duration and length, but about of all the ones I mentioned 6 or so I have on a daily basis, which make some days go okay and others not so smooth, with some weeks them peaking in intensity, mentally i feel more normal than early floxing but still not myself, I experience much pain in legs making it hard to walk sometimes, also both achilles are still a bother, with my Left being acute still, nerve pains are very strange because they seem to shift in different locations. Over all I do feel better in ways and sometimes worse in others than early on, this really is a back and fourth thing like many other floxed people have described, I am trying certain suggestions from other sufferers, which i change up with ; whey protein, magnesium supplements, vitamin c, hot epsom salt baths, vit A & D, cellfood,lemon water, apple cider vinegar,reverse osmosis water, I try to eat as healthy as i can,but its sort of hard when you have to rely on mother and money has to stretch, and some other things i have tried. I at times don't know if i have gone back in time in recovery or forward, its very hard to to tell with all the major ups and downs, but I know we all heal to our own degree and I do feel thankful that at 4 months although nowhere near my normal old self, I have made some improvement. knowing that there are many like myself which highly saddens me, but at the same time offers comfort that im not alone. I have definitely have a long road ahead of me as do us all, but I believe time is a big factor in our recovery, I still am very scared about the future but must keep on living, hoping & praying everyday for recovery. please if any other young floxies can relate please share your story or anyone it does not matter I believe as long as we all stick together and we can prevent this horrible illness from happening to anyone else. ~Peace & Love~ Robert
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Post by Mayleng on Oct 2, 2012 10:33:23 GMT -5
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Post by Mayleng on Oct 2, 2012 10:41:44 GMT -5
I hope you all don't think I am being obsessive about this. Sometimes when I talk to friends or family I can see eyes rolling and at one point two of my neighbors whose husbands are doctors pretty much put me down in front of other neighbors at our annual christmas eve breakfast a year ago. They have not even done any research nor know anything about it. However, right at that time my other neighbor's dd (Amy) was prescribed levaquin. She heard me and called me later to talk about it. That is the one I posted about earlier in this thread. I feel good that I at least prevented one kid from being hurt by this medication. Amy was 17 then, so levaquin was definitely counter indicated for her plus she had an autoimmune disease and was already in constant pain.
So if I seem to be going overboard with info, it is because that is all I can do to help since the doctors and FDA are doing more harm than good in this case. But until you have suffered, you can't know how it feels and to also know those who are suffering worse, we just don't want others to feel the pain. The only way for us to help is to get the word out, and maybe the doctors and FDA would come to realize that something has to be done.
For those who have developed tendon pains etc. think back and see if you have been on cipro, levaquin etc. I can happen months later, and does not have to be the first time you have taken it. It does not mean you have taken it before, it won't hurt you the 2nd or 3rd time. Many have taken it prior with no problems, but years later taking it again ended up with a lot of problems. This is a broad spectrum Anti-biotic, which means it kills everything and I mean EVERYTHING, good and bad and continues to kill months/years later. Also we feel some people who have been diagnosed with Fibromyalgia, are possibly suffering from Fluoroquinolone toxicity instead and don't know it because they have not associated it with taking an Anti-B.
Oh, and if you think you have been affected, stop NSAIDs and No cortisone shots. These make it worse, especially at the beginning when you are first affected. If you are at the beginning, take Magnesium or rub magnesium lotion or oil in the affected areas and REST the area.
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Post by healthy11 on Oct 2, 2012 16:51:32 GMT -5
Mayleng, we understand and appreciate the information. While there may not have been any way to have avoided Learning Disabilities/ADHD in our children, THERE IS a way to avoid Fluoroquinolone toxicity. By being informed, we can better discuss the situations with our doctors; it seems like in most cases there are other alternative antibiotics.
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