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» LymeNet Flash » Questions and Discussion » Medical Questions » levaquin questions again...need opinion

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Author Topic: levaquin questions again...need opinion
LymeNet Contributor
Member # 5914

Icon 1 posted      Profile for islandgirl     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

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?


Posts: 190 | From BC Canada | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
LymeNet Contributor
Member # 5914

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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.


Posts: 190 | From BC Canada | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 2297

Icon 1 posted      Profile for ArtistDi     Send New Private Message       Edit/Delete Post   Reply With Quote 
Here's some information on Levaquin; like you
I have my fears about it--

LEVAQUIN - Side Effects & Drug Interactions



Carcinoma, thrombocythemia

Other Special Senses Disorders

Parosmia, taste perversion

Platelet, Bleeding and Hematoma, epistaxis, prothrombin Clotting Disorders

decreased, pulmonary embolism, purpura, thrombocytopenia

Psychiatric Disorders

Abnormal dreaming, agitation, anorexia, confusion, depression, hallucination,
impotence, nervousness, paroniria, sleep disorder, somnolence

Red Blood Cell Disorders


Reproductive Disorders

Dysmenorrhea, leukorrhea

Resistance Mechanism Disorders

Abscess, bacterial infection, fungal infection, herpes simplex, moniliasis,
otitis media, sepsis, viral infection

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

"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: ***


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 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
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: 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,

***Websites for Fluoroquinolone-Related Reactions
Quinolone Antibiotics Adverse Reaction Forum:

Discussion Group Website of the Quinolone Forum: Case Reports, Updated
Reports, Information, Support, and More

DrugVictims.Org: Information, Articles, Studies, Personal Reports of
Reactions to Quinolones

RxList Website: Levaquin Case Reports Levaquin Case Reports

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Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002  |  IP: Logged | Report this post to a Moderator
Frequent Contributor (1K+ posts)
Member # 5298

Icon 1 posted      Profile for Mathias     Send New Private Message       Edit/Delete Post   Reply With Quote 

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.


Posts: 1242 | From New Jersey | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator

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