I finally called my LLMD today to discuss all the pain I am having with Levaquin. He didn't really give me to much help.
I have been posting lately that I am really not happy with my LLMD.
I just don't think he is as helpful as he should be. He never gives me straight forward answers. I almost feel like I need to dictate what needs to be done.
I have been going through this for so many years and I am just so discouraged. My latest lyme..through Stoneybrook..didn't even have one positive band.
My LLMD does not use Igenex..which I don't like. I had my own labs drawn through them 2 years ago and I was IND for lyme and Positive for Bartonella.
He told me today that he doesn't know if I am having a herx reaction or if it's the Levaquin that is making my whole body hurt. He wants me to continue on it for another week..if I want too. Those were his exact words. Shouldn't he be more helpful than that. He also said that it is possible to have tendon problems from it..although he has never seen it.
He sounded today like he didn't know what to do with me anymore. I asked if he was doubting my lyme dx and he said you can never be sure if one has it.
We talked again how I have had so much testing over the last 11 years. None of those tests ever turned up anything.
I asked him if he had any suggestions as to what we might do next so I could mull it over before my next appt. in 2 weeks. He said he wasn't sure because the Levaquin was already at the bottom of his list.
I feel like maybe he is giving up on me. I am just so mad, frustrated, sad, confused.
I don't know what to do next. I tryed logging into LDA for the doctor referalls but the page won't open up for me to register.
Can I just call them?
I can feel myself teetering on the edge of sliding into depression again. I am so sick of feeling scared about all of this.
I know nobody has the answers for me but I also know that this is my only place that I receive encouragement.
posted
I have a long list of names for you. Once you find the right dr, you'll be fine!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hang in there Kit! I know it is really difficult when communication is bad with a doctor. I had to switch doctors a few months after starting treatment, and it has really helped. Will send you a PM with my doctor's name. Take care.
Posts: 2557 | From home | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Kit,
Sorry to hear about all the problems you are having. It sounds like he may not be the best match for you. I would want a LLMD who used Igenex, for sure.
Have you tired posting on our site in the Seeking Doctor Forum? I've found the best resource is through others on this board who live in the same area. I've had good guidance through them.
Another good source of referrals is local support groups. I believe PA has a very active state group that may be helpful. I hope someone who knows more about that can give you a link to them.
Levaquin rally hit me hard and I felt lousy the entire time I was on it. I couldn't sleep well, along with just generally feeling worse than I had before. I didn't seem to improve as treatment progressed like I have on other protocols.
I know there are many here who have had problems with Levaquin, including tendon problems. You may want to do a search.
Good luck to you!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
((((((((((((((((((((HUGS))))))))))))))))))))) to you.
-------------------- 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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posted
I have been fortunate not to have a lot of pain with Lyme and coinfections. But by the third week on Levaquin, I hurt so bad everywhere. I could barely walk across the room. Then I got a new and distinctive pain in the back of my knee that I feared was my tendon. After thinking about it for about a day, I decided my remaining symptoms are not bad enough to risk damage to my tendons especially since I have not exhausted other abx options for Bart. So I made the decision to stop it. I called my LLMD to tell her, but I felt it was ultimately my decision.
I think you have to trust your gut -- both about the Levaquin and about your doctor. Good luck.
Posts: 164 | From USA | Registered: Jul 2005
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I am so sorry for what you are going through.
I had pain and weakness in both Achilles tendons from Levaquin. My disability from it lasted 15 months. I am almost recovered from the tendon problems but not fully. I could not drive for months and had to walk with a cane.
I would not mess around with Levaquin if you are having pain. I am putting up with the hellish herxes of Rifampin rather than risk a quinolone again.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Thank you all so very much for your encouragement. I knew I would feel better emotionally after reading them.
I have decided to stop the Levaquin. It's just not working out and the pain is so different from my normal lyme pain. I think it might just make matters worse.
My LLMD has made me doubt my Lyme dx. I have thought about that all evening. He is the LAST person that should be making me doubt it. It's not that he says I don't have it...he just beats around the bush so much when I ask him questions that he makes me doubt it.
It is very scarey to think of starting all over with a new LLMD. I know I have to do that though. My current doctor doesn't even recommend any vitamins/supplements to me.
Most recently I asked if I should take Magnesium with the Levaquin his reply was...if you want to, it wont hurt you.
When I was on the Rocephin in June I was having major yeast problems..when I called about that I was told to call my OB/GYN doc. That is when I really started to lose faith.
I will follow-up with everyones advice and will continue my search for a new LLMD. I won't fire this one until I have a new one.
Again, thank you so much. I don't know what I would do without each and everyone of you.
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Kit, I'm so sorry to hear you are so bummed out right now.
Don't give up hope....you will get better.
It does sound like you might need to find another doc. Hopefully some of the names you get will work out better for you.
I know how you feel, it's all so frustrating. Then when you have the times you don't feel like you are improving, it's easy to doubt everything.
We all understand. You hang in there.
You will get better!!
Take care.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
The Levaquin can cause lots of joint and tendon pain for some people. I think you and I are ones of the 5 percent or whatever that is effected.
What your body needs now is rest. Do not exercise the joints. Just move very carefully as you can cause more damage, even tendon rupture if you work the joints and tendons too much.
Rest is the best. Really, I know because I went through all that - no steroid shots either! That caused a huge flare-up for me.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
The Levaquin can cause lots of joint and tendon pain for some people. I think you and I are ones of the 5 percent or whatever that is effected.
What your body needs now is rest. Do not exercise the joints. Just move very carefully as you can cause more damage, even tendon rupture if you work the joints and tendons too much.
Rest is the best. Really, I know because I went through all that - no steroid shots either! That caused a huge flare-up for me.
I am assuming I will still be sore afterwards. It didn't help combat the horrific headaches I have been having anyway.
I am just going to stick to the Ceftin at this point.
I am trying to rest but my insomnia is making that difficult.
I haven't been doing any excercising. I went swimming several days ago and I had such pain in my shoulder and arches of feet. Not normal pain for me. It really hurt in the water.
I just took a Lunesta so I am gonna go crawl into bed. My hubby is off of work tonight so he is going to rub my restless legs for me.
I hope to catch some zzzzzzzzzz's and wake up not feeling so worried.
Thanks to all, kit
Posts: 655 | From Pennsylvania | Registered: Jul 2006
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quote:Originally posted by kitkat32: Most recently I asked if I should take Magnesium with the Levaquin his reply was...if you want to, it wont hurt you.
Magnesium is not supposed to be taken within 2 hours of taking Levaquin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Sorry, kitkat, that you're going throug this.
For what its worth, this is what is written in Dr. B's 2005 treatment guidelines about levaquin:
"Levofloxacin is generally well tolerated, with almost no stomach upset.
Very rarely, it can cause confusion-this may be relieved by lowering the dose.
There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur.
Unfortunately, levofloxacin and drugs in this family cannot be given to those under the age of 18, so other alternatives, such as azithromycin, are used in children."
In my opinion, you've gotta be able to communicate with your doc. If there is a problem there, like others have suggested, find an LLMD you're more comfortable with.
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