Topic: Whats the answer w/Quinolones - are they safe or not?
lymebytes
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Member # 11830
posted
One of my LLMD's prefers Cipro over Doxy for Ehrlichia, yes Ehrlichia. After some study from the Hope to Heal conference it does appear the quinolones do kill Bart and Ehrilchia.
I prefer Doxy and after 19 months of treatment have never taken Doxy and really need to treat my ehrilchia. One of my LLMD's does not want me on Doxy, dead set against it (why? I don't know) and prefers Cipro.
I have taken Cipro years ago w/o problems, but with this link floating around here, I am a little freaked out to say the least. http://www.fluoroquinolones.org/
Also, if you read the Cipro insert (also available at the FDA website) the side effects fit my symptoms to a "T". I woulnd't know if I was herxing or causing perm damage!
It also warns if you have neuropathy not to take it. Well my LLMD knows I have nueropathy and still wants me on it.
Would you take this drug knowing it truly is dangerous? The site above really only repeats what the warning label in all the quinolones read.
posted
Levaquin is also a quinolone. I think both are dangerous. I had to take both for my sinus infection (not at the same time)...but couldn't stay on them long enough to get completely well.
I still have increased nerve pain from them and I've been off of them for several weeks. Praying the pain will disappear completely.
If you have an alternative med, I'd take it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
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posted
I was on Cipro for a year with no problems- in fact was in best shape of my life on it!! Running 8 flights of stairs every other day with no tendon problems at all-
Depends on who you are though- had a friend with Lyme who went on Levaquin and had her tendon snap within a few weeks!!!!!!!!!!!!!!!!!!!! She had pushed it though, was feeling achey & tender and she exercised vigorously anyway- and SNAP! OUCH OUCH OUCH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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lymebytes
Frequent Contributor (1K+ posts)
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posted
Lymetoo, I hope you increased nerve pain goes away! This is my fear exactly. These antibiotics are different than most. These antibiotics are not natural compounds, but chemotherapeuticals with a potent toxic profile according to this site.
I know other countries have banned them.
Yes, I agree every drug, even aspirin has some degree of risk, but not like these drugs, the are much higher risk it seems and you always weigh the risk against the good or harm it can do. I think with other countries banning the quinolones is just a start,the risk here seems much greater than than the good they would do.
This website says you may not show signs of toxicity for up to 18 months and it can be misdiagnosed as LYME!! (18 months!, feeling good now means little, feeling good 2 years from now, you may be out of the woods, hopefully.
So - just think you could use them, have no side effect, feel great then 18 months later the toxic reaction occurs and you would believe your having an LD relapse since the toxic effects are identical to LD symptoms. Scary.
They also claim there is a limit for each of us with these drugs that we should take in a lifetime - we never will know when we have reached that threshold. It does sound too risky and if this site is even 1/2 accurate, I will say no to the quinolones and insist on something else.
Doxy for instance kills the same things and MORE and has neuroprotective properties and an anti-inflammatory, no real side effects that could be confused with LD.
Before taking any drug I read the label at the FDA website and cipro and levaquin have a scary label.
Some information from this site that has me worried:
IRREVERSIBLE INJURIES IN HEALTHY PEOPLE
DAMAGE SHOWING UP 18 MONTHS AFTER TAKING CIPRO OR LEVAQUIN
quote: It does sound too risky and if this site is even 1/2 accurate, I will say no to the quinolones and insist on something else.
[/QB]
Believe me, its accurate. Dont touch these poisons. It is not worth the risk.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
I've taken Levaquin several times. Twice for a sinus infection, before I knew I had Lyme. I've taken it twice since I found out I have Lyme. The longest I have ever taken it was a month.
It was one of only a few antibiotics I could tolerate. I don't know if I would have taken it if I had known about all the negative side effects you can get from it.
The weird thing is that I can't tolerate most meds, but was fine on Levaquin.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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jamescase20
Unregistered
posted
I read a study that showed only 10 persons out of over 300 had probs from tendon related stuff on cipro. AND the persons where ALL over 65 years old. NONE of the mid or younger aged 21-64 in the study had any problems. under 21 was forbidden from the study
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am so confused....I have taken it before with no side effects, but now with LD, I don't know, I already have neuropathy and worry about perm nerve damage. A part of me is not afraid at all and I would have taken it without thinking twice hadn't I seen the link, the dreaded link!
It is good to know the study showed only 10% had tendon problems, I wonder about nerve problems.
Lymetoo - I hope you keep feeling better - you'd choose Doxy over Cipro wouldn't you? Those are my choices, I need to pick one. HELLPPPPP!
posted
Lymebytes, I have read your story, you have been through hell already. Dont enter another one, namely the quinolone hell. Its not a pretty place and there is no (easy) way out.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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quote:Originally posted by jamescase20: I read a study that showed only 10 persons out of over 300 had probs from tendon related stuff on cipro. AND the persons where ALL over 65 years old. NONE of the mid or younger aged 21-64 in the study had any problems. under 21 was forbidden from the study
I know YOUNG (20-30 year old) persons who have been crippled by short courses of quins. I myself was only 30 when I was poisoned.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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quote:Originally posted by lymebytes: I am so confused....I have taken it before with no side effects,
This doesnt mean anything. I took them in 2000 and had no problems. It was the second time that messed me up.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Jamescase- just for the record, my friend was in her late 20s!!!
Personally I tihnk cipro is AWESOME because it took me into 100% symptom-free-ness!!! I LOVE Cipro!!!
But we ARE all different- and for some people it is not good at all! But I am glad they exist as options and I would go on it again without hesitation.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I did levaquin the first year of treatment about 2 months in I had soreness and by 3.5 months i was tearing major tendons and let me say that hurts nothing like having a muscle ripped loose and retract clean to the other end of attachment tore two major ones one in each leg groin,quad. So if you do any levaquin as soon as soreness starts stop it and call LLMD.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
(NOTE: Cat's Claw has nothing to do at all with levaquin.)
Californialyme: Are you still 100%-symptom free?
Jamescase20:
There are studies, that say that quinolones cause tendinitis in 10% of the population. That is because those studies are normally conducted by doctors with little or no knowledge at all about the fact that quinolone tendinitis (included tendon ruptures) normally become noticeable for the patients well after ending the treatment (up to almost two years later). The studies of the 10% of side effects ratio consider only the time during which people actually take the drug, and shortly thereafter in the best cases.
The real ratio of tendon injuries is 100% among all persons that take fluoroquinolones, but only a few become symptomatic. You can be absolutely sure that the level of activity at which tendonitis emerge after a round of fluoroquinolones is extremely lower than before taking them. If one can climb 8 flights of stairs a day after a long course of cipro, be sure that that person will be completely unable to climb just a fraction of what he/she could climb before without getting a very long lasting knee tendinitis. The problem is that these tendinitis do not heal in a very very long time, they can stay latent and asymptomatic if you do not use the tendons affected, but as soon as you try a repetitive effort again, they emerge once and again and the same for many months or years.
Here you have an excerpt of a medical article that some others have posted here before(from a French University, funded with public money, therefore independent from the laboratories industry).
The first reports of an association between fluoroquinolone antibiotics and tendonitis came from New Zealand and France in 1992.
There have been many since and by 1994 the FDA had received 25 reports of tendon rupture. Seventeen of these were of Achilles tendons but shoulder and hand tendon rupture was also described. The age range was 33-85 years, and the tendon ruptures occurred at therapeutic doses at a range of two to 42 days after first dose. Of these 25 cases, 14 were also taking steroids and four occurred in people of advanced years, but in nine there were no other risk factors.
Appropriately for a tendon problem, a prospective ultrasound study was conducted at the Hospital Universitaire Dupuytren [Limoges, France]. Some 23 subjects (15 female) were given a fluoroquinolone orally for two weeks. All had normal Achilles tendons at day 0. By day seven, 14 (61 per cent) had echographic tendonitis. Both sides were affected in seven, and two (7 per cent) were symptomatic.
The ultrasound features were of hypoechogenicity (50 per cent), peri-tendous effusion (28 per cent) and tendon thickening (22 per cent). For a volunteer study in healthy controls, no ruptures occurred.
And, from the "dreaded" site on fluoroquinolones: The ultrasound features were of hypoechogenicity (50 per cent), peri-tendous effusion (28 per cent) and tendon thickening (22 per cent). For a volunteer study in healthy controls, no ruptures occurred.
But the problem is not the tendonitis, that is probably the least serious of the injuries caused by the fluoroquinolone antibiotics, but the permanent nerve damage (acknowledged on the package insert), the brain injuries, along with depression, anxiety and suicidal states, they cause diabetes (severe hypoglycemia and hyperglycemia), they increase enormously the risk of getting skin cancer (for a long time if one is exposed to strong and direct sunlight), they damage the eyes irreversibly, they cause heart injuries, and hormonal imbalances.
Can anyone cite many antibiotics that are forbidden all over the world to persons under 18 years of age? Fluoroquinolones damage irreversibly the tip-end-growing section of the bones, from where all the bones of the body have the capacity of enlarging theirselves until the adult age.
The fluoroquinolones are the antibiotic with the most potent anti-inflammatory effect, so one gets relieved quite quickly from prostate enlargement symptoms, sinusitis symptoms, overall pains and flu-like signs, but once the anti-inflammatory effect fades off, the toxicity caused shows up in full force over the following months.
We cannot forget that fortunately there are some cases of successful long treatments, with no side effects at all, and it is good to be reminded of those cases.
And we cannot forget either that the fluoroquinolones are a very much needed class of antibiotics to treat life threatening infections and to fight those bacteria that respond only to them.
As with almost all toxic substances, the outcome depends on dosage, length of treatment, history of earlier treatments and personal overall health and build but specially liver metabolism.
Posts: 94 | From canada | Registered: Nov 2006
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cantgiveupyet
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posted
so how do we know if we have lyme or were 'floxed'
i was on cipro in Feb 2004 for a month and got sick in Aug 2005
-------------------- "Say it straight simple and with a smile."
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pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
cantgiveupyet - good question. I too took Cipro within a couple years prior to my LD diagnosis.
Reading the posts here, it sounds too much of a risk.
Not only that the insert reads if you have neuropathy no to take it. My major issue is neuropathy, followed by tendon pain and muscle pain.
I cannot believe my LLMD prescribed this for me knowing full well my specific pain issues.
If you compare the Doxy insert, it seems to kill everything, has neuroprotective properties & is anti-inflammatory as well.
I guess Rifampin is also a choice, but THAT doesn't seem to be handled well by many when I search it here.
Biaxin is thought to kill Bart and in some cases Ehrilchia - one LLMD said Doxy/Biaxin is a "dynamite combo" and one member here reported her entire family went into remission this combo.
I think my mind is made up...there is just too much risk and countries banning these drugs and years later having a toxicity issue that cannot be diagnosed is the last thing I want.
Thanks to everyone, this really helped.
Now - how do you argue this point when your LLMD insists you take it and he knows best???
quote:Originally posted by cantgiveupyet: so how do we know if we have lyme or were 'floxed'
i was on cipro in Feb 2004 for a month and got sick in Aug 2005
Good question. I was floxed in Feb 2006 and 8 months later found out that I had Lyme... so in my case, as crazy as it sounds, it seems that floxing indeed triggered the Lyme...
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I think that the damage to tendons is a time and physical thing. Maybe it depends on what state your body is in at the molecular level nutrients being delivered to tendons? Or Maybe it depends on or how long infected? or Maybe it depends on the strain of lyme you have may cause this to surface faster ie missing more to begin with before even treating kinda thing? I know I was infected qutie awhile before abx and when i began levaquin if memory serves me was late in the first year of treatment.
Hey even the MFGrs dont quite understand why some people get tendon problems and others dont. Like I said I was sore deep down long before I tore TENDONS. But I think it is well worth doing except and this is crucial when you get sore deep down along the bones stop it immeadiatly and move slow the next 6 months and dont lift anything heaher than 20lbs and watch going up and down stairs.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
You asked if anyone has an LLMD who will not prescribe levaquin --- yes, i had an LLMD who does not prescribe levaquin, because of the tendon-damage problems.
It was this LLMD who said that it's basically the same chemical as cat's claw. I don't know if it's true.
Posts: 1226 | From USA | Registered: May 2007
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posted
For some reason many seem think that you can get only tendon problems from quinolones. But that is just the beginning, they have much more to offer. Take a look at this blog: http://deathbycipro.wordpress.com/
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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lymebytes
Frequent Contributor (1K+ posts)
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posted
OMG - that article is unreal bartonfink! Like I said, tendon damage isn't my worry it is the perm nerve damage like this person.....after reading this, why hasn't this class of drugs been banned in the U.S. - no LLMD should ever prescribe these, ever.
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