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Old 09-09-2007, 05:06 AM   #1
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onmyway HB User
Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

GOOD MORINING,

I have been on levaquin 750 mg 1 time per day for 11 days now.

I has really knocked me on my butt! I had a better day yesterday or at least I thought! I went out and ran two errands and then I went to a low key Batchlorette party last night. We were at dinner for three hours. By the time i got home I was in so much pain and my feet and hands were really swollen and aching horribly.

I have not been diagnosed with Bartonella but from the reaction that I am having to this medication I am almost sure that is what I have! I have never had this bad of a herx to any medicine like this!

I have been out of work for a week and a half and I am supposed to go back tomorrow. I am not sure if I am going ot be able to.

Does anyone on know what is causing all the swelling and severe pain in my feet, ankles and hands. I think i also have some swelling in my hip joint area!!!!

Any feed back from those of you who have had Bart woudl be greatly appreciated! Is this normal? Did you experience this? It seems like the longer I am on my feet the worse they are!

Thanks,
Onmyway

 
Old 09-09-2007, 06:11 AM   #2
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Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Hi onmyway. I am sorry you are having so much pain. It may be that you did more than your body could handle.

I hope it lets up soon.

 
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Old 09-09-2007, 05:24 PM   #3
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Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Howdy onmyway.

My LLMD suspected a Bartonella co-infection even though I tested negative for it 4 times.

I was 750mg, once a day. Exactly at the 12 week mark -- OH! -- I wanted to die.

My original lyme rash broke out (itchy like all heck). A new rash, perfect bulls-eye, popped up behind my left ankle, and I broke in weird red/purple spots. These spots looked like elongated bruises and sometimes they came in pairs. That's a definite sign that Bartonella was present; Bartonella is also called Cat Scrath Fever in some cases.

The foot pain was so bad, the only way I could walk was this Frankenstein-ish shuffle. When I would go to take a step, the heel of back foot rises so I can get momentum to take the full step.

Well, I felt as if that back foot was going to rip in half right along my instep. It was horrible.

So I would walk without bending my feet.

I also arm pain, back pain, neck pain and hand pain. When I was Herx'ing and the syptoms got bad, I had to walk bent over as my back hurt so much.

I spent 100% of my time on my sofa. It was pretty gross, if I dropped something (even pizza or soup or a drink). I slept there because I was way too fatigued and in so much pain that I could not make it to my bedroom.

I woke up there and worked all day there (I don't know I stepped in lucky poop, but I can work from home and I held my job throughout my entire ordeal). I would days without brushing my teeth (gross, but true) because the thought of getting up, walking to a sink, having to lift my arms to find the toothpaste and brush -- I just blew it off.

When I did have to go out (my daughters graduation or something big) I could not get up the stairs to shower so I used Wet Ones to clean up.

Most ppl just stared at me in the grocery store or church or the pharmacy, and had that expression of "Bobby junior, stay away from the weird lady who walks like Herman Munster and has spots all over."

My family and friends avoided me (they still do). I felt isolated. I taught my kids how to use my debit card so they could shop while I stayed in my truck.

A lot of our grocery shopping was done at CVS or Rite-Aid because the actual grocery store was a few more blocks farther.

I had felt that I wanted to die. I would pray at night to God and ask him to take me since I could not tolerate the suffering anymore. I wanted a new caregiver for my kids since I was too exhausted and painful that I couldn't parent. I simply wanted to go away and not feel the pain, fatigue, complete loss of balance, amd my brain was buried deep in a marshmallow.

Levaquin has been known to cause damage to tendons so be careful, keep an eye on what kind of pain you have and if feels like it could be tendons, call your doctor as soon as you can.

THERE IS GOOD NEWS!!

After being on Levaquin for 9 months, my brain fog went away, my hair began to grow in, I could remember things, I could talk fast and watch TV as I folded clothes!!!

The pain was beginning to diminish, I could walk to my mailbox (yea! that was a big deal for me), I could listen to music and drive at the same time.

On a good day, I would try to take care of 2 errands. Sometimes I did it, other times I did not.

My LLMD took me off meds (for the life of me I can't recall why) for a month. 12 weeks ago she put me back on it and boy-oh-boy the pain returned as expected and I swear it is worse this time. The spots aren't as bad as they were before. My brain fog is still better, although when I'm Herx'ing it gets bad again.

Please hang in there. MY LLMD prescribed some painkillers for me. My current pain would keep me up at night. I feel as though flaming porqupines were strethcing every bone and muscle in my body.

I know how tough it is. There are some painkillers do not make you feel dopey or spacey. There are also some natural creams I have tried that helped a bit.

I got better on Levaquin and I pray that you do also.

Beating Lyme and co-infections can be a heck of a fight, and you have to do things that you don't want to do, and you may have to hide your suffering from co-workers. So hang in there.

Peace and health to you,
Mickie

 
Old 09-10-2007, 05:21 AM   #4
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onmyway HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Thank you so much for the reply!!! That helps me so much you have not idea!

I was actually thinking of stopping my meds because I am hurt so bad. It is mainly my hands , instep of my feet (I too walk like Frankentstien!), and my thighs. I had three neuromuscular massages last week trying to help relieve the pain! I also jsut ran out of my pain meds and muscle realxers. I have been on vicoporfen since December. I am pretty used to it by now but today wil show exactly how much it does for me!!!! I am also attempting to go back to work today as well. Not sure how that will go!

I told my boss htis morning that I did not think I would be able to work everyday this week! My sweet mother has offered to work three dyas a week in my place so I can rest! She used to work at the same place I do so she knows the ropes. I have a wonderful mother!

The only pain that I am concerned with is the pain in my fingers on the fatty part of my fingers in between my knuckles. It hurts bad and I cannot grasp anyhting very hard with them! Did you experience that? I am not sure if that one is tendon pain or not?

Any more feed back would be greatly appreciated!!! I thank you for your response. I feel a little bit better about the things that are going on!

Take Care!
Onmyway

 
Old 09-11-2007, 07:55 AM   #5
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roro HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

wow, this whole thread sounds just like me. the swollen fingers, the frankenstein walk, the no energy to do anything, even shower, staying on the sofa. my dr said he thought bartonella is one of the main players in my illness, along with erlichia, lyme and babesia. I can relate to the wanting to just die, I sometimes feel like my family would be better off without me, that I am a burden. even tho i know thats not true.

 
Old 09-11-2007, 11:45 AM   #6
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fixmymama HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Please don't say that your family would be better off without you. Reading that it made me cry. It is my parents that are sick. I love them so much and would do anything to help them. Including quit my job to be their nurse if needed. Hang in there!
My mom is sad because she can not walk or sit on the ground with my children. They do not know her any different. They love her just the same and enjoy their time riding on her scooter with her. Memories that will stay in our hearts forever.
Having her here with me is worth any amount of work asked of me.

Missy

 
Old 09-11-2007, 04:38 PM   #7
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onmyway HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Hello all,

I got in yesterday to see my doctor and he pulled me off the Levaquin. I was in so much pain and i was starting to get like tennis elbow feeling.

I am off meds for two weeks and we are going to test me for all co-infections and lyme again!

This is so frustrating. I am not sure what I am going to do after the results come back. I guess it will depend on what they say.

I will keep you posted. I am currently just trying to keep myself as comfortable as possible with pain meds and muscle relaxers! That Levaquin did a number on my body!

Thanks,
Onmyway

 
Old 09-11-2007, 04:50 PM   #8
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Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Hi onmyway. It sounds like you were getting the tendon pain, so it is good you discontinued it.

I am glad you have been tested for the co-infections.

Hang in there okay?

 
Old 09-11-2007, 04:58 PM   #9
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onmyway HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

Thanks for the support!

 
Old 09-12-2007, 06:22 AM   #10
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Kelly5907 HB User
Re: Bartonella??? SWOLLEN FEET AND PAINFUL HANDS!!!!1

onmyway... I was at my LLMD yesterday.. I also have bartonella.. But my lyme symptoms arent so much joint and muscle pain... I have central nervous system and neurological symptoms.. he told me yesterday that bartonella completly throws off your CNS.. and that zithromax is a great antibiotic for it.. I have now been on IV zithro for almost 3 weeks and my symptoms are alot better.. I dont know if you have CNS and neurological symptoms but ask your doctor if you can try zithromax.. It may just help.. good luck..

 
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