posted
I think Sixgoofy would say yes... she's not here... so I'm letting you know that one!!
I would say no, because I have bad reactions to quinolones in general. Hate them. I think they are really dangerous... BUT SO IS UNTREATED BART!!!
Have you tried Rifampin yet? (another one I hate)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think you have to weigh her symptoms and how bad she is.
personally, i can't take them. even tried cipro, no go. muscle pain and didn't want to risk damage.
it's a hard call. my llmd said the tendon rupture is very rare but then i'm a rare one and it would probably happen to me.
i would say try it and if she has problems, pull it asap.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I would try a combo of doxy/mino with zith/biaxin and rifampin first. If there were no noticeable improvements with these drugs then I would move on to Levaquin.
Does your daughter's doctor think that she is done growing? If so, I would be less fearful of side effects from Levaquin/Cipro/Factive.
Of course, I would also take into consideration the severity of the child's symptoms. If she is really struggling and her LLMD thinks that Levaquin is her best option, go for it.
One more thing to consider, what does your daughter think? Being 14yrs old, you and her LLMD should explain the risks and benefits to her and allow her to take part in the decision making process. It would be good for her to understand why she is taking what medicine and what to expect.
Posts: 5237 | From here | Registered: Nov 2007
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posted
I would, if her doctor thought it best, especially if we had tried other options.
For my daughter, I would be weighing what could happen with what has already happened.
Posts: 984 | From US | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I took it for one month without problems.
Not everyone who takes it has problems. Regular doctors give Levaquin to people with sore throats, ear aches, etc. It is commonly given. It is not just used for bartonella by any means.
Posts: 9931 | From Maryland | Registered: Dec 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Hmmm... these are all very appreciated responses. Thank you.
Acid is by far her worst symptom, I believe due to Bart. 2 months ago, she was on Rifampin and Zith and her acid reflux went crazy so he switched her.
She has practically no symptoms right now. For example, she just started Bactrim and Biaxin and was tired and fuzzy headed for a day and now she's fine again.
She was on Cipro for a month with no symptoms either. So you're thinking that's a good sign?
She's not done growing. I think she just grew some last week at camp.
And yes, Sammy, including her in the decision making is a good idea. I hadn't actually considered that.
Another thing is he's talking about putting her on it next month and she starts field hockey practice then. That's 6 hours a day, 5 days a week. Maybe we should wait.
Do you guys agree that if acid is her worst symptom, a med that really touches her bart will likely make her acid worse for a while before it gets better?
Our LLMD usually just calls it without explaining why/when/how. I like to know why/when/how. But being the introvert that I am, I don't think of my questions until 24 hours later. That's probably why I value you guys so much.
Thanks for your help!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Hardly any symptoms .. and levaquin?? I don't know.
How do you know the acid reflux wasn't due to the Zith and Rifampin, not from bart?
6 hrs a day of hockey??... nope
just my non-medical gut reactions!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
lymetoo, yeah, I thought that would be the response about the hockey.
she had lyme 7 years ago, was treated for 3 weeks w/ amoxy, has had worsening acid for the past 7 years until diagnosed with barrett's esophagus last year.
she also has bart streaks and stretch marks so i know she has bart. the bart causing the acid is just my guess.
and yes, the almost out of control acid could have been from the meds but maybe it was because those particular meds were roughing up the bart in her gut. i just don't know how to tell what's working.
ps. lymetoo, excellent job as moderator!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Barrett's .. oh my. That's terrible for someone so young!!
Thanks... my moderating is just temporary! Six will be back Sunday night.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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runner21
Frequent Contributor (1K+ posts)
Member # 1974
posted
No, i would look into Byron Whites herbals for Bartonella, go slow and it will work. You have to go thru a doctor to get the formula, but it will be well worth it.
Posts: 1118 | From jacksonville,fl usa/santa rosa ca | Registered: Dec 2001
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
runner21, could you tell me a little more? are you speaking from experience? did you have bart and now you don't? what kind of doctor would i have to go thru? any information would be greatly appreciated!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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blinkie
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posted
I woiuld say, if bart is there...yes. A 14 year old can tell you if they are having any potentially bad side effects/ Levaquin, in my opinion, is one of the only really good drugs for bart.
Make sure that they take it easy on using tendons. I pulled one in my elbow while vaccuuming the house on IV levaquin. It has gotten a lot better, though and the lev really pushed me to a new level of healing.
Posts: 1104 | From N.California | Registered: Jan 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
MAKE SURE she has a "base-line eye exam" beforehand & ask the doc to keep her on the low end of the Rx range (for her weight).
If she 'tolerates' it well, then you might 'up' the dosage a little after a few weeks if the doctor thinks it wise. That's my 2 cents. (Levaquin's a 'serious medicine'.)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
17hens, when you said she had Bartonella I assumed that she had a whole list of severe symptoms that were not improving on other therapies.
If GERD is her daughter's only remaining symptom I would definitely NOT put her on Levaquin. I would try tapering off the heavy antibiotics to a low maintenance dose or maintenance herbs.
Drugs are very hard on the stomach, I would not be surprised if the medications have worsened or even caused her GERD symptoms. Healthy people can develop this condition too.
You might consider consulting with an ND or MD with experience in alternative medicine to help treat the GERD and Barrett's esophagus.
Posts: 5237 | From here | Registered: Nov 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Sammy, I would say that right now her only symptoms are Bart streaks on her hips, Bart stretch marks from the tops of her thighs to below her knees and GERD.
She takes 40mg. in the am and 40mg. in the pm of Protonics to control it. She's been on this amount since her Barrett's diagnosis a year and a half ago.
She herxed on her new meds last week (Biaxin & Bactrim) but a herx for her is like the first day of her period, fatigue and achy legs and only lasts a day or so.
So, Sammy, tell me what you would do? I am all ears! (spoken very sincerely)
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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17hens
Frequent Contributor (1K+ posts)
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posted
I just reread everything and it seems there's one factor I haven't made clear - time line of GERD vs. abx.
She was severly ill in 2003 for 3 months. She was treated for lyme (woke up one day w/ 13 bull's eyes) with Amoxy for 3 weeks
Acid reflux started a few months later, increased over time, until 1 1/2 years ago when she couldn't keep a single thing down for 5 days. Diagnosed w/ GERD & Barrett's. Has been on Prilosec 80mg/day and now changed to Protonix 80mg/day since then.
Had odd things happen over the years (ie: sore lower back for 2 months, etc.) but ducks always related them to other things (like sports), never lyme.
She's had Bart streaks and stretch marks for 5+ years, although I never knew what they were until this past winter. The day I learned what they were from, that's the day the lightbulb went off in my head.
This past Christmas she started w/ lymey symptoms - aches, fatigue, sore jaw, sore neck. Not sick enough to stay home from school, everything very mild, only this time I knew what I was looking at.
Started abx w/ LLMD in Feb. 2010. She's been on Rifampin & Zith which made her GERD go crazy again. THen Ceftin & Cipro - 1 day mild herx. Now Bactrim and Biaxin - 1 day mild herx.
Otherwise she's a very healthy kid. Now that I found an LLMD, I want to follow his instructions.
But at the same time, I struggle giving her all these abx if they might harm her.
How do you get rid of Bart in a "healthy" person? How do you know when something is working? How do you keep them healthy thru treatment? Is there a surefire way to get rid of Bart w/out abx?
So I'm understanding the majority says no to levaquin if she's not sick-sick. Find another way. What way? I'm going to look up Byron Whites herbals for Bartonella per runner21.
Please, I'm open to advice! I have 3 weeks to come up with a plan before her next LLMD appt!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Have you tried a gluten free diet to help her stomach symptoms?
I understand that bart is a player here, but if her stomach problems could be controlled, you might be able to treat the bart without the Levaquin.
I don't know what I would do about the Levaquin in that situation. You could ask the LLMD how often he has used it in teens, for how long, results, side effects, etc. and then see how you and she felt.
I took Levaquin for 5 months and did feel some tendon pain. My LLMD thought they were from herxing, but I am still not convinced. I tried to go off the Levaquin and felt even worse overall, so I stuck with it. They did go away and were minor when they were there.
I am an adult, but I would do it again, if I needed to. My 12 year old is very sick and I would give it to her, if her LLMD thought we should. If my daughter were out having a life, I don't know. I (almost) comletely trust her LLMD, so I might if he thought it best, based on what he had seen.
Posts: 984 | From US | Registered: Dec 2007
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sammy
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Member # 13952
posted
17hens, was your daughter diagnosed with Bartonella through clinical exam or laboratory testing?
If she has positive test results, have the doctor look back in her records to see what strain it is. From what I have read, there are many different types of Bartonella and some strains are known to respond better to certain antibiotics.
17hens, I feel for you. Deciding to treat or not to treat, antibiotics or herbs, it can all be so overwhelming. In this case, you may just need to trust your gut instinct and follow the recommendations of your trusted LLMD.
If you both think that she is still battling Bartonella, get together to weigh the pros and cons of each treatment option. If in the end you decided that Levaquin is the drug of choice maybe hold off for a couple weeks until she's done with the all day every day field hockey practices.
Field hockey camp is going to be stressful enough on her body without the addition of new antibiotics. Once she's made it through camp and her muscles are good and strong then it will be safer to start a new medicine/Levaquin.
Of course, these are just my honest opinions, same thing I would tell my sister or best friend if she were in your situation.
*Hugs 17hens*, you are a good caring moma
Posts: 5237 | From here | Registered: Nov 2007
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posted
It depends .... for ANY medication, you have to weigh the cost vs. the benefit. My quality of life was low when I decided to take Levaquin. I took Cipro before for an unrelated infection and did fine on it, so I knew I did okay on that family of meds. For me, the benefit was worth the risk.
I did watch for any tendon problems and modified the way I was working out so there was less risk for injury.
It was completely, 100% worth it for me. It dramatically reduced my brain fog, but that could also have been because I treated parasites on my own with Humaworm at the same time. My gut problems improved, too, but again could have been due to the parasite treatment.
Talk to your daughter about it. See how she feels. Generally speaking, I found that the meds that worked best for me I almost craved. My gut instincts paid off for me.
If Cipro was okay, my feeling is Levaquin probably would be, too. I would discuss field hockey and being on that family of drugs with the LLMD though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Thank you so much for your insight everyone, jkmom, Sammy, & Six.
It is a hard thing to figure out and I appreciate all the advice, insight, experience I can get.
Sammy, my daughter has a clinical diagnosis. I have Bart too (clinical with heel problems, fatigue, brain fog) and Rifamphin & Zith have taken me to a new level.
My son has Bart stripes on his hips too and other Bart rashes. Since we all got it from our own backyard (comforting...NOT!) maybe it's all the same strain?
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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