posted
Someone help me out please!!!!!! How many people have tried the quinoline family of abx's such as Levquin, Cipro, Avelox ect??? How long is recommended to stay on and has any one had adverse reactions to it? I am very scared to try this for my Bart. as I was just diag. and the side affects on the net and from a few posters are real scarry. Seems side affects are cummulative in regards to how much your body can handle in a life time and that once you aquire these CNS symptoms or pain issues it does not go away. Or other things that are said is they cause relasps and folks think it is Lyme relaps. Any one with long term success on these abx'x???
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I was on Cipro for over a YEAR with absolutely no side effects except NO SYMPTOMS, every single symptom went away with it completely, I was on Cirpo & Zithromax actually, great combo for me, I was running flights of stairs on it with no tendon problems. BEST shape of my life!
A friend of mine went on Cipro and had a tendon tear within a few weeks but they were achey adn she pushed it... STILL- it is LUCK!! You won't know until you try!!!
you could have a horrible experience or like me you could have a great one. I had zilch side effects with it. Literally never a single one except I felt the best I had ever felt since I had been bitten!!!!!!!
Was wonderful- I then got pregnant 1 month before my doc said he would have takne me off abx and declared me symptom free and have been on amoxicillin ever since as I am breastfeeding!!! (but she says she will stop on her third birthday which is this month! gosh I am tired of nursinG!!!!!!!!!!!!!!!!!!)
ANYWAY, cirpo was GREAT for me*)!*)!! I loved it.
I have a prescription ON ME and the second she stops nursing I get to fill it and then hopefully go into full remission and off everything. I haven't been able to try that because I am breastfeeding and it is not worth the risk going off while doing that-
ANYWAY AGAIN!!! BEST WISHES, be not faint of heart*)! "Faint heart never won fair lady!" that old quote= Remember that*)! And the Fair Lady is your own self*)! Take care- Sarah
-------------------- 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
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I am on the other end of the spectrum with Cipro and related fluoroquinolones - I had tons of trouble with them. no one was tracing my pain to the fact that I was taking them. Had ruptued tendons and lots of pain. With lots of time and rest, I recovered.
As Sarah said, it is different for many different people. If you try it, just keep an eye out for sharper joint pain than you might have had before and stop if that happens.
Some people get some neurologic symptoms from these kinds of drugs, too.
Maybe you should ask if you have other options for treatment of Bartonella.
posted
Ann, did you get your magnesium levels up first? They say the manf believes low mag levels are the cause of tendon tears. I have started cipro and have pain in hands and feet...but no where else. I believe I am bart herxing. Watch the videos about bart here...very informing.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I am certainly not trying to talk you out of anything or be the bearer of bad news, but I have studied this subject indepth for my website and knowing the facts about any drug/supplement even food, etc., is important before ingesting ANYTHING.
A good example would be, I love the penicillins, bicillin made my CD57 jump from 58 to 140 in 7 weeks. Other people could die from the side effects, everyone is different.
Another good example a reaction to a "simple" supplement nearly put my son in the hospital last week and a detox binder depleted all my vitamin d to critical levels. My point...check eveything.
Here is a site that shows the bad side of the quinolones. They may help or they may not, in my opinion its a gamble, as you will see reading the facts.
My LLMD will only prescribe them for 30 days. Other LLMD's won't prescribe them at all. Some LLMD's will prescribe for a year. They are banned in many other countries.
I personally have taken them prior to LD, but I never will again. There are other choices for Bart treatment. Biaxin, Rifampin,Doxy, and Flagyl.
There was a post here just yesterday, where someone believes they were "Floxed" (term used for quinolone toxicity) and are desperate for help. Unfortunately, there is no known cure for quinolone toxicity once it occurs. Other's have reported perm nerve damage, partial colon removal and more.
The Burrascano video above I have seen and it is great, I love Burrascano, he is "the" pioneer in Lyme treatment. It almost was convincing enough to me to take them, but I had to consider the video was also at a 2005 conference and I am sure much more has been learned in the last 3 years of using the quinolones and less Md's and LLMD's are prescribing them.
You can always read about all prescription meds by going to the fda website and doing a drug search and reading the label - it is all there, the good and the bad.
I am glad to see someone concerned and checking out the pros/cons before putting any new drug into your body, you are wise.
I never take anything without heavy research and even clinical trial information.
I don't put faith into other people's experience as we are all different, I certainly don't put my faith in any doctor LLMD or otherwise. I take their advice and go with my instincts.
I am truly scared to death of taking the quinolines and was hoping to wait until is was absolutely necessary if at all. I did read the man's posting yesterday on being floxed and it was so scarry. I also watch Dr.'s B. video too but did not notice the it was from 2005. Watched the you tube video (levquin)too so sad!!!!!!! I guess the scarriest thing is not knowing if it is a side affect when you start to take it or a herx or even the start of permanent damage.
Anyone sucessful with the other abx's mentioned and killing Bartonella? Another poster told me that 40% of folks die from untreated Bartonella? Also told the live microscopy is the only way to know if the bugs are gone? I only had the Frye lab Bart test done and then lots more testing from my local lab too.
At this point I am not sure who or what to trust? I have a LLMD in PA DR.S. only seen once so far as I am a newbie.
Any info helpful, Thanks, Stacy
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Some llmds use Rifampin (plus another abx -- minocycline, doxy, or biaxin) for treating bart. You would need regular checking of your liver enzymes if taking rifampin.
It is scary, but you might well be one of the lucky folks (there are many) who respond well to levaquin if you and your doctor decide to treat that way. And there are alternatives. It is important to read as much info on this as you can before making a decision.
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
posted
I was on Levaquin for 3 months and really turned the corner in treatment with it. Six weeks after the Levaquin I am being weaned off abx and onto the Cowden because I'm doing so well.
It was a miracle drug for me. I had no problems with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Please remember this: If something bad happens after taking a quinolone (sometimes only 1 pill is enough), there is no MD or LLMD on this Earth who can help you. No-one can help you. And believe me, thats not a pleasant situation.
-------------------- 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
| IP: Logged |
JRWagner
Frequent Contributor (1K+ posts)
Member # 3229
posted
Stacy...this is from Tree's post "Learning by phages".
Truthfinder Frequent Contributor Member # 8512
posted 10 January, 2008 09:20 AM -------------------------------------------------------------------------------- Tree, this ties in with TerryK's thread. Additionally, I believe she also cites the same study you did in one of her posts: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=056681
quote: -------------------------------------------------------------------------------- An astonishing new finding was released by John Travis in Science News (July 2003;164).
Travis reported that research performed by John F. Prescott found that certain antibiotics, such as the fluoroquinolones, the class of antibiotics that includes the name-brands and generic brands of Levaquin[R], Cipro[R], Tequin[R], and Avelox[R], actually are known to trigger a type of virus called bacteriophages (viruses that can infect bacteria) to change the genetic sequencing of the bacteria, causing the bacterium they have infected to start producing toxins.
These viruses can act as genetic delivery vans, invading bacteria, such as spirochetes, often lying dormant, until activated by a change in the host (your body's) environment. Once activated, these viruses insert their toxin-generating genes into the bacterial chromosomes. These viruses can turn basically harmless bacterium into killers through this genetic sequencing of toxins (Travis 2003). http://findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382
I wonder if this could explain why quinolones can have such a devastating effect on the connective tissue of some people?
Posts: 1414 | From Ny, Ny | Registered: Oct 2002
| IP: Logged |
posted
I have taken almost every abx including levaquin and never had an adverse reaction, except suicidal depression from mepron, but when I took cipro I had projectile diarrhea. Not a herx, right?
Posts: 830 | From Colorado | Registered: Mar 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
I just have to count on you fellow patients. ![[Smile]](smile.gif)
Printer-friendly view of this topic