posted
Thanks for all who shared their levaquin ideas with me last week.I've done lyme and babs treatment for 1.5 years, just trying to get rid of low key symptoms which are horribly annoying but one can live with. I cannot concentrate, think, or work. Little pain, just off balance head, bad cognitive and neuro damage left. Now the LLMD thinks I just have a resistent form of lyme which may be hard to eliminate.
I had a huge reaction four days into this thing (a herx?)Greatly exaggerated all my symptoms, even added a few old ones, that I had pre-lyme treatment.
Emotionally off the wall, terrible neuropathy feet and hands, achey joints (toes, elbows, knees), ears ringing VERY loud, and pulse in head. Very tight band around head, where a head band would be, pin pricks all over scalp.
I cut the dose of levaquin in half....yesterday left off the tini and just took 1 levaquin before bed. It was still quite an awful time.
Question: Is this a good herx or something not to deal with? How does one know?
I feel very bad today, my LLMD said it is my call.
Is this a common experience with levaquin?
Thansks.
Posts: 190 | From BC Canada | Registered: Jul 2004
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posted
Thanks Cave. I just read your article posted BEFORE mine. Didn't put the two names together. (I'm lucky I can remember my password....usually takes 3 tries before I look it up on my bulletin board!)
These questions may be timely. I notice a bunch of us getting rxed with levaquin lately. Thought it was a new drug or somehting.
Islandgirl
Posts: 190 | From BC Canada | Registered: Jul 2004
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ArtistDi
Frequent Contributor (1K+ posts)
Member # 2297
posted
Here's some information on Levaquin; like you I have my fears about it--
LEVAQUIN - Side Effects & Drug Interactions [Levofloxacin]
infarction
Neoplasms
Carcinoma, thrombocythemia
Other Special Senses Disorders
Parosmia, taste perversion
Platelet, Bleeding and Hematoma, epistaxis, prothrombin Clotting Disorders
Respiratory System Disorders _______________________________
Reactions to Cipro, Levaquin, and Other Fluoroquinolone Antibiotics
Since the December, 2001, publication of my article in the Annals of Pharmacotherapy,1 I've received hundreds of e-mails from people suffering from devastating, long-lasting side effects associated with Cipro, Levaquin, Floxin, and other fluoroquinolone antibiotics. Most of these people are young and had been healthy and active. These antibiotics have legitimate uses in treating infectious diseases, but they are overused for minor conditions such as sinusitis, prostatitis, and bladder infections. My stance is that Cipro, Levaquin, and similar antibiotics should be used only when other, safer drugs are ineffective, or for organisms that are only sensitive to fluoroquinolones. As I said on National Public Radio in October 2001, I strongly believe that all people placed on these antibiotics should be warned about infrequent yet serious reactions that may cause joint, muscle, or tendon pain or rupture, nerve pain (burning, electrical sensations, tingling), muscle weakness, thinking or memory problems, heart palpitations, rapid heart rate, gastric problems, skin rash, or many other unusual physical or psychological symptoms. These reactions can occur quickly and suddenly, and patients should alert their doctors immediately. Doctors, for their part, must recognize that these symptoms can lead to severe, long-term pain or dysfunction, and should stop the antibiotics immediately if at all possible. Because adverse reactions may increase in severity and duration with each exposure, patients with these reactions should not receive fluoroquinolones again. I'd hoped that my article would accomplish this, just as it prompted the U.S. Centers for Disease Control to alter their guidelines for treating anthrax. But it hasn't had the same impact on the medical system.
"These adverse reactions can occur quickly and severely. Doctors must be better informed."
Most people do fine with these antibiotics. For those who don't, the effects can often be minimized with proper warning and prompt response. Unfortunately, few patients were given any warnings. Again, their rights of informed consent are violated. On the hopeful side, I have spoken to the FDA about this issue. They are taking a very serious look at the problem. But although the FDA has already received thousands of reports, action is slow. And even if the FDA requires new warnings in package inserts and the PDR, most doctors will never notice them, and because of the unrelenting influence of the drug industry, most doctors will continue to overprescribe these drugs when other, safer, cheaper drugs would do. So you'd better be informed. Preventing fluoroquinolone reactions is much, much better than trying to treat them, because there is no known, specific treatment. Below is the information that I have sent to people seeking help. I don't know if any of these suggestions is highly effective, but having experienced a severe, long-term disability myself in the mid-1990s and now having improved considerably, I encourage people to keep asking questions and trying things. You can also connect with others enduring similar experiences with fluoroquinolones at the following websites: ***
INFORMATION FOR PEOPLE WITH FLUOROQUINOLONE-RELATED REACTIONS
I have sent this information to hundreds of people who have contacted me about their reactions following the publication of my paper. I wrote the paper so that people having these types of problems might get accurately diagnosed, because most physicians have no idea how severe some of these fluoroquinolone-related reactions can be. First, I should explain I am not an expert on Cipro, Levaquin, or other fluoroquinolone antibiotics. I am a researcher (I do not see patients), and my major area of expertise is medication reactions, which you can read about in my medical journal articles and my recent book, Over Dose: The Case Against The Drug Companies (Tarcher/Putnam, info & reviews at amazon.com). I wrote the article about fluoroquinolones because of the reports I received and because no one was paying attention to this serious problem. My knowledge about fluoroquinolones in particular and antibiotics in general is limited to what is contained in the article. I have not conducted any new research on fluoroquinolones since writing my article in the Annals of Pharmacotherapy in December, 2001, so you need to check the medical literature and others sources for updated information. Regrettably, there are few doctors who are informed about fluoroquinolone-related reactions. You might find information about knowledgeable doctors at some of the fluoroquinolone websites, where people have posted a lot of useful information. As far as I know, there are no specific treatments for the nerve or tendon/joint/muscle problems associated with Cipro, Floxin, and Levaquin, and other fluoroquinolones. Most of my information is hypothetical or anecdotal; some of these recommendations may help some people, but not others. Medications such as amitriptyline or other tricyclics, or Neurontin (gabapentin), may be helpful for neuropathic pain (tingling, burning or electrical sensations) or nerve pain. Muscle spasms, twitching, tremors, and seizures may be helped with long-acting benzodiazepines such as clonazepam (Klonopin) or diazepam (Valium). SSRI antidepressants (Zoloft, Paxil, Effexor, Prozac, etc.) are occasionally helpful for depression. Because patients' nervous system are sometimes very sensitive, these drugs should be started at very low doses and increased, if necessary, very gradually. Magnesium (chelated) in doses of 400-1000 mg/day may be useful for reducing neuropathic pain or muscle spasms in some people. Doses over the U.S. recommended daily amount of 320 for women and 400 for men should always be taken with a doctor's supervision. Seniors, people with kidney disorders, and those taking medications for heart, hypertension, or other vascular or neurological disorders should have medical supervision even for RDA doses of magnesium. Interestingly, another doctor has also been recommending magnesium, as low doses of milk of magnesia (1 or 2 teaspoons twice-daily), to be taken for several months. The theory is that because of the affinity of minerals for these antibiotics, this might help leech some of the remaining fluoroquinolone molecules from the tissues. Some patients have benefited, but not all. In discussion with this doctor, our sense is that calcium, magnesium, and perhaps other minerals may be beneficial. With magnesium, better absorption is important to get the magnesium into the tissues, so chelated magnesium or a magnesium solution might work best. As with all of these recommendations, there's little solid science, so it's trial and error. (For more information on magnesium, please go to the other magnesium sections of this website.) B-vitamins have been reported to reduce tingling. One person wrote to me that high doses of lecithin have helped with memory problems. GABA, an amino acid, has some similar qualities to Valium and Klonopin and may be helpful for anxiety, nervousness, or insomnia. Anti-inflammatory drugs are controversial: some people have written to me that they have helped, especially for muscle/joint/tendon pain; others have written that they have worsened their conditions. If you have benefited from anti-inflammatory drugs, you might obtain additional benefit from high doses of omega-3 oils (fish oils; EPA/DHA). There is considerable literature on this. Omega-3 oils take time to work, but the ultimate result can be better than standard anti-inflammatory drugs (NSAIDs). Many alternative doctors are knowledgeable about magnesium, GABA, omega-3 oils and, perhaps, about other possibilities. Corticosteroids (cortisone, etc.) are very controversial. Doctors sometimes prescribe steroids in the hope of reducing the reactions, but many people have written that steroids actually made their cases worse. Steroids should be used with great caution unless there is a specific indication. Fluoroquinolone-linked reactions can be nasty, and recovery varies from individual to individual, with some reactions resolving quickly and others lasting years. That's why I do not advocate using fluoroquinolones as the first antibiotics for treating minor infections. If we are ever to change the medical-pharmaceutical mindset about this, it will be accomplished by patients. So please submit a Medwatch report. It's easy to do at: www.fda.gov/medwatch/report/consumer/consumer.htm. Or call 800-FDA-1088). I regret that I cannot give you a more specific, well-proven remedy for these reactions. It is tragic -- and very frustrating -- that the medical-pharmaceutical system frequently fails to recognize these problems and, therefore, doesn't warn patients or doctors. So doctors not only fail to recognize the reactions, but continue to prescribe fluoroquinolones to people who've already shown signs of toxicity previously. It's a terrible situation, but not unlike I've seen and written about with other drugs. I hope that your condition resolves soon. Sincerely, Jay S. Cohen, M.D.
1. Cohen, JS. Peripheral Neuropathy with Fluoroquinolone Antibiotics. Annals of Pharmacotherapy, Dec. 2001;35(12):1540-47. Copyright 2003, Jay S. Cohen, M.D. Readers have my permission to copy and disseminate all or part of this newsletter if it is clearly identified as the work of: Jay S. Cohen, M.D., The Free MedicationSense Underground E-Newsletter, July-August 2003, www.MedicationSense.com.
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Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
islandgirl,
Those symptoms sound like side effects but they could also be a herx or a combination of both.
I've done many Floroquinlones (Levaquin, Cipro, Factive) at different times for many months at a time and had some of those same symptoms. I found that they subsided after a few days as my body adjusted. Some of the symptoms were 100% side effects.
It's your body though and only you know what you can and cannot tolerate and what you feel could be dangerous or not.
Floroquinlones were very helpful for me. I would be a mess without them.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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