posted
Hi all! I am sorry for being hysterical but I have been researching Levaquin all over the net and I have found out some awful things about it.
My LLMD told his secretary to tell me to STAY on the Levaquin (just start again on 1/4 tablet instead of 1/2) I am supposed to work up to 1/2 tablet in 1 week.
I am overwhelmed and frustrated since I told my LLMD that I did not want to be on Levaquin. His secretary told me that my LLMD said he thinks it is still the best route for me to try even though it makes me feel like hell.
Any suggestions? Thanks in advance, ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Lymefighter,
Levaquin is normally prescribed for bartonella. It sounds as if you may be herxing even on a 1/4 of a pill. The main side effect of levaquin is tendon pain and pretty strong herx's as it's normally pretty effective against bart.
Another side effect of bartonella is huge emotional swings. Rages, panic's, dark thoughts, etc. You're taking a very small dose. How long have you been on levaquin and what dosage ?
Hang in there, it'll be AOK !
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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My LLMD prescribed me with Levaquin (250mg per day for 1 week then up it to 500mg for 1 month).
I was only on it for 6 days and I couldn't walk. I was suicidal and in a panic and everything else you said.
I just stopped it 3 days ago and I'm still in horrible pain!
Today I started the 125mg (doctor's orders) even though I said how much I hated it and how much it made me SO ill.
I am supposed to increase the dosage to 250mg in one week and then let the LLMD know how I'm doing.
I told his secretary how dangerous I thought this drug is and how ill it made me and how I didn't want to keep taking it. I asked the secretary to ask my LLMD (since I can never talk to him directly) if there were any other meds that were as effective as Levaquin that didn't have the same side effects.
I am wondering if maybe my whole message got misconstrued to my LLMD and he didn't really understand how against this drug I really am.
I just am scared and I don't know what to do. I guess following the doctor's orders are the best I can do...but I get SO many awful side effects from Levaquin that I feel like I am going to die.
I have a very sensitive system I guess...
Thanks for your post...anymore info/advice would be much appreciated! Thanks ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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Carol B
Unregistered
posted
We all have our limits-and at some point we have to trust our intuition. If I were in your shoes(assuming you are wearing them) I would probably tell the secretary that I was going to stop the levequin until I talk directly to the doctor.
Meanwhile document everything you are experiencing, so it doesn't get lost in translation.
Easy for me to say-huh! I know I had excruciating neck and headaches for a week or so when starting minocycline and toyed with the idea of stopping it, or going to ER to see if I was having a brain hemmorage or something , but before i could make up my mind what to do -they stopped ! Just like that !
It is really hard to figure out what to do.
Perhaps you could fax your doctor-in your own words , and not have to worry about a secretary's interpretation. Whenever I have called the doc with a question-even though the initial info goes to the secretary- it has always been the doc who calls me back.
posted
Lymefighter... as others have said this decision is up to you, no one knows your body better then you.
I will say this though... Levaquin helped me turn the lyme/possible bart corner big time. I mean Levaquin quite possibly saved my nite. I was on it for about 2 months, and i had some wicked herxes and very odd red rashes pop up all over my body... I was dizzy for almost a month straight... but wow, I had my life back. I had 2 or three incidents of severe tendon pain, and the third one my doctor took me off it, and switched up my ABX... which continued my path to wellness.
I was on 750mg/500mg/ alt per day... every other day would switch dose.
Best wishes to get better, please keep us posted, and if you stay on lev, pay close attention to warning signs... at one point it felt as though my foot was broken for 2 or 3 days.
[ 12. August 2006, 03:38 AM: Message edited by: Jadedemolush ]
Posts: 48 | From Toms River New Jersey | Registered: Apr 2006
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posted
Herxes can be very hard for newbies to deal with. This is why some people stop treatment completely, and inexperienced docs say the patient is having an allergic reaction. So, your doc is probably thinking you just need to push thru this. However, as said before, sometimes stopping temporarily is the best course of action, because a herx can be a serious event. You are the only one that knows whether you can push thru or need to stop for a break.
Posts: 8430 | From Not available | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, dear Farrah.
I am so sorry you are still having such a hard time, my little neighbor.
Your doctor is doing things kind of step-wise. Not unlike my doctor, or most LLMD's, when the patient is having a really hard time.
First advice is almost always to back off, then "sneak back up" on the drug at a smaller dose. And see if that helps.
Another bit of advice might be a break from it, then a re-try.
That's not to say these things will work for YOU.
The doctor HOPES they will since Levaquin is such an effective bart drug.
However, if you've given it a try, and even the sneak-around routes haven't been tolerable, you ARE allowed to call the doctor back up and and tell him you can't do it.
I'm reminded of my time on Flagyl. I was in he11 the entire time, right up until approximately the last few days. Amazingly, despite how much I hated it, it cleared things like few other drugs have done.
With lyme, babesia, AND bart, it's likely that you are going to be having intense herxing. Just try to take it slowly and think of all the years you were misdiagnosed!! With each day of feeling awful, you are actually peeling away a layer of disease to reveal your healthy self again. You ARE going to get better and you're gonna be a reg'lar 20-year-old again...
Keep your doctor posted and hang with the micro-doses if you can. Don't let what you read "all over the net" freak you out. Come here often for support and remember, you are going to beat it!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Let me start by saying that I have no personal experience with Leviquin, thought I did read about the tendonitis. It's very scary.
I would imagine that your LLMD, if truly LL, has probably had a lot of patients complaining of the same symptoms as you. This is probably why he doesn't seem so concerned.
If you back down the dose by 1/2 for a week, I would imagine that the herx pain should theoretically decrease after a couple of days, once the level lowers in your system.
I would imagine that, if you are still experiencing tendon pain at the lower dose the LLMD would likely consider an alternative at that point. The Levaquin is considered the best to treat Bart.
Have you tried taking Glucosamine, Ester-C and the Pharmanex Flex Cream that Dr. B recommends?
I would imagine that the Gluc & C would help if it was joint but not tendon?? (Anyone please correct me if I'm wrong)
The Flex Cream he says helps with any kind of body pain. (I haven't tried this but I'd really like to know if it's true. Can anyone offer experience with this?)
If it were me, with an LLMD very experienced with Bart, I'd probably try the lower dose for a few days, but be scared as can be that I was making the wrong decision. (I think it really depends on how well you trust the judgement and experience of your doctor and how you personally perceive your pain.)
Have you had any Herx before the Levaquin to compare this to?
I really hope this resolves for you quickly. I feel so terrible for all that you're going through.
Does anyone with more experience have ideas to help with Herx joint pain as opposed to tendon pain?
Maybe you would feel better if you could thoroughly describe the type of pain to the doctor. Try telling the nurse that you are very frightened and really feel the need to speak briefly with the doctor. (Sometimes nurses know an awful lot, but some make assumptions that a doctor wouldn't make and sometimes things do get lost in translation.)
I really hope that you can get the help you need. You've been through so much. It seems to me that you are a true survivor. I really hope and pray for you that this is just a Herx and not the dreaded tendonitis.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I would completely insist on speaking directly to your LMD. Theres no reason for him not to talk to you directly if you are having an issue with the meds.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Hi,
It sounds like you've researched and found that Levaquin is one of the fluoroquinolones, a class of antibiotics.
And, yes, there have been some very toxic effects reported from this class of drugs. (Among other sites, see www.fqresearch.org).
If you have any concerns about this I would ask for an alternative. Long term and even permanent adverse effects are reported from the fluoroquinolones. There are petitions to Congress and the FDA to put black box warnings on them. They include the tendon damage, but also neuro effects. It would be easy to confuse these effects with a Herx.
I really don't mean to be controversial or cause problems for anyone.
There are alternatives for bartonella, such as Rifampin. I also think you should be able to speak with your LLMD. Finally, it's your body. You are in charge of what you take and what treatments you want to sign onto. If you have serious concerns, I would insist on being able to change, or I'd seek another LLMD. I think you're right, and the message may have gotten mixed up in the translation.
Good luck and keep us posted. I hope you feel better very soon!
Posts: 1066 | From East Coast | Registered: Dec 2000
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posted
I really like Carol's idea of faxing the doctor and outlining the problems you've been having with the levaquin. If he/she insists you stay on it, ask him/her to explain the thinking behind the recommendation.
I just know for myself that there have been medicines I just can't take. After a while you sort of get a feel for when you are having a herx or a bearable side effect or whether this is a medicie you just are not able to tolerate. It may be a medicine that others can tolerate just fine, but all of our bodies react differently. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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posted
Hi Lymefighter. Since we go to the same LLMD and he has also put me on levaquin, I want to express my concern and let you know that I know how hard it is to get in touch with the doc.
He seems very overwhelmed and does not return calls quickly. But I do think that he knows what he is doing. I have had to be a pain in the butt a few times and basically call every day until I get through to him.
He does have a cell phone for emergencies and you can call it if necessary. If you don't have it, pm me and i will give it to you.
I am only on levaquin 2 times a week and it is the first drug that has given me a herx. It appears to be very powerful!
Stay strong and trust your inner guides. I know it will get better for you.
Posts: 85 | From Eugene | Registered: Jun 2005
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posted
After reading all this about Levaquin I'm nervous. Aside from my normal minocycline my GI doc just prescribed a 10 day course of Levaquin and Flagly for a bout of diverticulitis. I know about the tendon issues and figured 10 days wouldn't hurt or if I started to have these sypmtoms I'd go off it. I've been on it 2.5 days and haven't noticed anything except some insomnia....now I'm wondering if I should have asked for something else? This board is so helpful in so many ways but sometimes it is hard because we read all these horrible experiences others have on specific meds that in actuality might work well for others. I guess that is the price we pay for the good the board does!!
Posts: 98 | From cambridge ma | Registered: Oct 2005
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posted
Thank you to all for your posts! I really want you all to know how thankful I am for your insights, opinions and advice!
I am still on the 1/4 tablet Levaquin and I keep feeling worse and worse...but I figure that means it must be working! I do trust my LLMD so I'll try my best to hang in here with it.
I'll let you all know if something changes or if I start feeling better. Hopefully I won't rupture any tendons! I am SO exhausted I am pretty much bedridden right now except for coming online to post stuff with you guys!
Thanks again for everything... ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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posted
I'm just starting month two of 500mg Levaquin/day. I've had migrating joint pains and, upon the advice of my acupuncturist, I've been doing Tai Chi warm-up exercises. I do them really lightly; I don't bend my knees too much and several times it has made the joint pain disappear. Go figure.
My biggest problem on Levaquin is lyme rage, depression and nervous system hyperirritability. I had these before but the Levaquin has increased these sx dramatically. I finally consulted a LLMD/Psychiatrist - what a boon! This LLMD/P told me that Levaquin reduces GABA levels. GABA is calming so when it's reduced these kinds of sx flare. I believe the LLMD/P is recommending to my LLMD (I consulted with the LLMD/P by phone so the LLMD/P can't rx directly) an anti-seizure med for this. I'm sure the fact that I have restless legs and difficulty sleeping figures into the picture.
I have spoken with LLMDs and a non-LL psychiatrist about this issue and none of them had the knowledged that the LLMD/Psychiatrist did. This doc knows how lyme drugs effect the brain and has techniques for getting Lymies through the psychiatric stuff. That's my plug for an LLMD/Psychiatrist. I wish I'd consulted one sooner.
This doc also suggested I increase the Magnesium Glycinate I'm taking up to bowel tolerance. Evidently the glycinate form is highly absorbable and caused fewer bowel problem than magnesium oxide. The doc also suggested I increase the free glycine I'm taking. Doc says it crosses the blood brain barrier and turns into GABA in the brain. I had some leftover GABA from another doc so took some of that, too, tho theoretically it doesn't cross the BBB. I took glycine and GABA on an empty stomach between B & L and between L & D - did pretty well during the day but skipped it after dinner - oops - major lyme rage and irritability triggered by three year old getting doses with cafeine in a chocolate cake and not being able to go to sleep until 10:30 PM. I'm still coming down from the rage thus I'm up at 12:30 when I should be sleeping. But I ramble on ...
Good luck with the Levaquin, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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posted
I was really nervous about taking Levaguin as well. I actually didn't take it when my doctor first prescribed it but eventually did. It wasn't as bad as I had thought it would be. I didn't have the side effects that I had scared me so much in my readings.
Posts: 547 | From Maryland | Registered: Mar 2005
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quote:Originally posted by ellenluba: I really like Carol's idea of faxing the doctor and outlining the problems you've been having with the levaquin. If he/she insists you stay on it, ask him/her to explain the thinking behind the recommendation.
I agree. At least make sure he knows how much you fear it and how you're doing on it.
Rifampin is effective for many.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
how are you doing lymefighter?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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, but before i could make up my mind what to do -they stopped ! Just like that !
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You are in charge of what you take and what treatments you want to sign onto. If you have serious concerns, I would insist on being able to change, or I'd seek another LLMD. I think you're right, and the message may have gotten mixed up in the translation.![[sleepy]](graemlins/sleepy.gif)
I am pretty much bedridden right now except for coming online to post stuff with you guys!
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