Getting my butt kicked again - this time by Levaquin and Rifampin

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JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/20/2008 12:20 PM (GMT -6)   
Guys - I was doing really well for about 7 days.  Not back to "normal" but just better.... I didn't feel like one big purple/green bruise from head to toe.  My knees still hurt and my left shoulder/head still hurt, but I wasn't in pain EVERYWHERE.  It seemed like I was tolerating the Levaquin very well and that the Lyrica was addressing the fibromyalgia like pain.... and then I woke up today, day 9.... OMG.  I hope it's a Herx.
 
Hope everyone is hanging in there and doing OK (or better - haha rolleyes )
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/21/2008 12:55 PM (GMT -6)   

Yes, i can relate with the levaquin nightmare. I've tried many meds throughout my journey and nothing compared to the levaquin herx. Knee pain, shoulder pain, foot pain, calf pain, burning sensations, tingling, numbness, depression. Good stuff!

Eventually you might have to stop due to tendon issues or neuropathy. Pulsing one week on, one week off might become a better strategy for you in the future. This will allow the tendons to recover a bit while the organisms take longer to bounce back than 7 days.


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/21/2008 12:57 PM (GMT -6)   
Oh wait, i forget back and neck pain.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/22/2008 5:38 AM (GMT -6)   
Woke up yesterday with right calf pain and almost fell on my way to the bathroom..... then yesterday and today (so far) it's in my right foot. I have to wear high-heels to a 1 hour event tomorrow (they're uncovering my deceased father-in-laws head stone - I guess in the Jewish tradition they do this 1 years after the death).... I know I'll make it, but jeeeeesze...............

I'm just glad the Lyrica is working on some level.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


Sulma
Regular Member


Date Joined Apr 2008
Total Posts : 366
   Posted 11/22/2008 2:17 PM (GMT -6)   
phsinvent said...
Yes, i can relate with the levaquin nightmare. I've tried many meds throughout my journey and nothing compared to the levaquin herx. Knee pain, shoulder pain, foot pain, calf pain, burning sensations, tingling, numbness, depression. Good stuff!

Eventually you might have to stop due to tendon issues or neuropathy. Pulsing one week on, one week off might become a better strategy for you in the future. This will allow the tendons to recover a bit while the organisms take longer to bounce back than 7 days.


Saw Levaquin the thread title and thought this would be a good spot to share this.

Here's a little tidbit I found in a study of the "nicotinic (niacin) transport system"

"These lines of evidence suggest that the transport system of lomefloxacin and ofloxacin in rat erythrocytes is common with that of a water-soluble vitamin, nicotinic acid, to which quinolones are structurally analogous."


Notice that last part....the quinolones antibiotic group are structurally analogous to Niacin. Many of us here have taken antibiotics belonging to this group for our Lyme. Levaquin is a quinolone as you know.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/22/2008 2:55 PM (GMT -6)   
J,
I was reading about all of your pain and all of the meds that you are on. Wellbutrin is good for depression but can really give you chest pains. Or even panic attacks. And wow. 300 mg is a big dose.
Have you tried cymbalta? You would only have to take about 60 mg of it. And it would get rid of your pain, and your fatique and your blues. I finally got it a year ago, And I was mad that it took them that long to give it to me! I take 30 mg in the morning and 30 mg later in the day. So that I don't get too excited. And it really kills the appetite and will make you loose weight. Which is not the good thing for me. Since I don't eat enough all ready. But some people really like that about it.
If I did not take my Cymbalta because I felt too good. Man in a couple of days I would be waking up and not being able to get out of bed without being curled up like a old, old lady who had rolled her jeep, so then I get back on it asap.
Some people can take it at bed time. Not me. That would be like drinking coffee before bed. I use it as a pick me up. It is perscribed to people who are losing their limbs to diabetes for their pain. So all things considered.......
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/22/2008 2:57 PM (GMT -6)   
yikes...
I am starting on my levaquin next week...500 mg....got me worried now...herxing again....gosh I am getting so sick of herxing already!
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/22/2008 5:18 PM (GMT -6)   
MVineyard - Yeah, I tried Cymbalta many times many years ago. It doesn't seem to work for me. Since beginning the Lyrica, I have almost completely stopped the Darvocet and any extra Tylenol. It seems to work for the ALL OVER HEAD TO TOE pain. Thanks for everyone's concern. My LLDr. wants me to go 2 weeks on Lev. and then 1 week off. I've almost made it thru the first 2 weeks, so I'm trying to stick with the plan.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 


phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 11/23/2008 2:59 PM (GMT -6)   

Your LLMD has a very good plan. I think one week on, one week off or two weeks on, one week off is a great idea when it comes to this class of drug.

Another strategy is to consider beating the suspected bart or mycoplasma type organism down with a combo of a macrolide/tetra class and bactrim abx combo for many months before(6-12). This way it will be less brutal when it comes time to trying levaquin. And will also require less time on levaquin.

I did levaquin ages(years) ago with minimal prior abx treatment and it was a nightmare. I would rather not talk about the first levaquin experience. The second time around, after a year of Roxithromycin, Bactrim, Doxycycline rotated with Biaxin, Bactrim, Tetracycline. I didn't notice much pain at all the second time with levaquin. My theory was less germ load which was decreased via a safer abx route prior. Which allowed me less time on levaquin the 2nd time and less herxing.


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/23/2008 7:03 PM (GMT -6)   
I hadn't heard of the Lyrica...taking notes here.
okay....fess up phsinvent..tell me about your first levaquin exp. misery loves comp. I just started....and man, I did not feel so hot this morning, and then the stomach cramps. I mean I have to be able to walk....
What the hell??? If I didn't know better I would think that I had food poisening.
I did not tolerate the doxy well either. When the LLMD from FLL put me on 1,200 of doxy a day. I was, well, bleeding terribly.
I have a 30 day supply for these things..I don't think it is going to happen, I am going to throw them at someone....lol
And wow...they were like 350.00 on top of it all. What does it kill??? The bart? I mean really....kind of late for that one no? What is the purpose of this abx? I am sure they told me...but in one ear...lol
ok....common phsinvent...tell me. I can't be momma and do this drug if this is going to be like this ...or worse. You can tell me direct, as to not scare the kids...lol..
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 11/23/2008 7:06 PM (GMT -6)   
J????
Are you feeling better now?
It is the 23rd. Did you herx? Are you over it yet?
Hope so, hang in there!
Do you have someone to help you?
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 11/24/2008 4:36 AM (GMT -6)   
MV - Made it through the service... but the night before, my husband found out his Aunt had passed away and so another side of the family will be flying here (Tampa) today for the funeral tomorrow.......... fortunately this side of his family has it together enough to rent their own car and stay in a hotel (ha-ha). And, I'm not obligated to go.... I don't think I could make it anyway. His aunt was 97 years old!

I am completely worn out. My 2 nephews are handsome, over-educated (ones a dr., the other is a lawyer), and extremely obnoxious when they get in the same room with their parents (my brother and sister-in-law).... so we had an entire day of that and then they all flew out around 5pm.

I made it through 2 weeks of the Levaquin..... it says to take with lots of water, so I would drink water until around noon, eat a lttle something and then take the Levaquin.... and then drink another full glass of water. This seemed to work fairly well. I had approx. 2 days f calf pain and 2 days of foot pain, but nothing I couldn't live with.

My husband talked to his psychiatrist friend who said they don't know exactly how Lyrica works or why it only works in some patients. It's an anti-seizure med. but they found out that it helped nerve pain and nerve damage pain.... seems to be working, before that, no-one could touch me without me just jumping out of my skin. When the pain management dr. (who prescribed the Lyrica) took my reflexes with the little rubber hammer, I jumped all over the place. She said she'd never seen anyone jump like that before.

Hope everyone is OK. I see my LLDr. tomorrow, so hopefully he'll keep me on this regiment for a while, seems to be working on certain levels.

Thanks for everyone's concern.
We'll get through today - Jennifer
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, 08/25/08 - 10 weeks of IV Rocephin, my first visit to a Pain Mgmt. dr. - she was non-judgemental and will not prescribe me any "opiates" which in the end, is probably a good thing.  Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Rozerem 8mg, Darvocet, Acidophilus, Rifampin 600mg, Levaquin 500mg, Lyrica 150 to 300mg,
Medicare/SSDI theme song - http://www.youtube.com/watch?v=bd2B6SjMh_w 
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs
 

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