posted
I am starting levaquin and I have been dreading for quite some time. I have been treated with most lyme meds. I've been seeing an LLMD for the last 3 years.
I just finished 10 months of IV in December and my doc is now switching me to Levaquin. So anything that can be shared with this drug would be helpful!
Thanks, Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I have not been on riphamin (sp?) but my LLMD has often mentioned putting me on it-and then switching her mind to other alternatives.
This is pretty much my last shot in terms of antibiotics. She's doing a mold test, cd57, igenex testing and most likely they will come back all normal-which will not give me a lot of options for going forward.
I still have classic lyme symptoms-like very hard time sleeping-waking up in the middle of the night due to numbness and pain-terrible migrains-and chronic fatigue-
I am really at a loss at what to do-she's saying that we've done everything and that I should consider detoxing now.
I just finished Rocephin in December and I'm on my 4th year of lyme treatment-but I just thought I would feel better if I was "cured" or whatever. Hopefully this blood work will come back and be able to tell me something.
It's so hard to be young (24) and not be able to still after 4 years to be "normal."
Any advice is welcome. I am kinda doing all this on my own. With no finacial assistance from family so please if you can give me advice-keep in mind that I am poor (especially after all this)
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
aye smiles, i'm in the same boat
i have everything from the memory problems, word finding problems, attention/concentration/spatial problems, vision problems, chronic fatigue, muscle spasms, joint/muscle pain, occasional bone pain, charlie horses, twitches, sleep problems, stabbing/burning/tingling pains, i'm sore anywhere
i'm touched lightly, slurred speech, balance problems to stiffness, tooth pain where my crown is, tmj like symptoms, weakness in my legs, light and sound sensitivity, daily low grade fevers, night sweats and problems swallowing at times
i'm sure i'm forgetting stuff but meh. and these are all symptoms that i was being treated for that was considered a tickborn disease, whether lyme, bart or babs. i had additional symptoms before/during treatment that went away and most the symptoms i still have were worse before/during treatment(esp the pain but my memory/brain/verbal symptoms have only gotten worse the past year)
but i've been told by two well known llmd's that i'm cured. of course the 2nd llmd i went to said the first was wrong and i actually tested positive for babs (was treated for babs, bart and lyme) w/the 2nd llmd
it's odd when you're being treated for lyme/coinfections due to specific symptoms and then one day they say hey, these symptoms i've been treating you for, well they can no longer be due to a tickborn disease anymore so i don't know what to tell you...it just sucks
supposedly i'm ok cause my cd 57 was 126. yet i have all these symptoms and they have only gotten worse in the 1 1/2 yrs i stopped treatment. i'm much better than i was - some symptoms went away and the ones i have left over (minus the brain fog, memory, verbal stuff, etc) are better than they were before treatment but i have no idea what to do
maybe it's not lyme and i'm gonna stay sick forever. and my husband is going through the same thing. his cd 57 was 200. he, the llmd, myself - we all thought he was cured. all his symptoms were gone, he felt great. and the past year the symptoms have all returned and they're worse. they're all the normal lyme symptoms too
so, i don't know. maybe we're sick with something else. maybe it's left over symptoms that will never go away. i don't know why some ppl can't seem to get 100% better or at least close to it when others do
Posts: 1485 | From USA | Registered: Apr 2004
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posted
Yes, lately I have increased numbness and tingling and loss of words. I haven't experienced that since before I did Rocephin (I just ended in Dec and did it for a little over a year). It was my magic drug. I infused and I could eat bread again without getting too sick, I had energy to work out, and I just felt so strong. I could run and my memory was back. It was amazing.
It's been 6 months since I stopped it and now I am feeling so sick again. I want to quit my job and go on disability. I never in a million years thought I would ever say that. I have worked through this whole process (except when I first came home from college-I spent 8 months at kaiser 8 hours a day doing testing).
Maybe my tests will come back horrible. My doctor is doing about 2 grand worth of testing-yikes and hopefully we get some answers!
Anyways, this is too depressing! I am normally so bright and shiny-maybe it's the levaquin who knows..but i feel like crap and will start crying hysterically for no reason. My emoitions are all over. It's so frustrating!
Thanks for your support! Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm on Levaquin and have been a little over three months. I had done two rounds of Cipro at different times and gone the route of babs treatment in between.
In any case...Levaquin has the potential to kick your butt, but I do think that if you are one of the lucky ones that can tolerate it, it's a wonderful drug.
You do have to be aware of tendon issues and take it easy, but since I am so winded and exhausted, taking it easy is not that hard at all.
I know that those that have done well with it, call it one of their wonder drugs in getting better and good for Bart and BLO. So good luck and keep us posted.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Yes I suposed I forgot to mention that I won the jackpot and tested positive for babs, bart, and erlichia.
My bart and erlich tests have been negative for about a year now, but babs just won't quit. I have night sweats, arms and legs going completely numb in the night and waking up-My doctor finally put me on sleeping pills (lunesta) because she could see I was exhausted. She completely against them, and only gave me 7 days worth.haha but I have been begging for months. I just hope this is a herx and not me really getting sick again.
Thanks again for the support-it really means a lot-because no one really understands how hard this is. It's so hard! Especially hiding it from my work.
Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I have only been on this drug for 3 days and I feel like I am almost out of body. My emotions are ALL over the place. My joint pain is HORRIBLE-
It hasn't been this bad since before IV Rocephin. It hard to sit, stand, walk, type. I just can't believe it.
This drug is crazy! I want to cry-I wake up with my arm in severe pain completely numb or my legs fall asleep after seconds instead of minutes.
Suggestions? lyme kill off?
Thanks Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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Peacesoul
Unregistered
posted
You all may want to read this info about Levaquin
Apparently it doesn't kill bart
This was posted on my other lyme site I sent it to my LLMD and she heard about this as well and agrees. But who the heck really knows anything
posted
I've used Levaquin (500mg) for ten weeks and it didn't help me.. I was using with 40mg somac.
But it didn't give me any side effects neither..
KauaiGoddess: How long time did it go until you first felt improvement from the rifampin treatment?
Posts: 275 | From Home | Registered: May 2007
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posted
I am trying to kill the babs not bart. I took a shower this morning and got so naucious I almost threw up.
The pain is also in my hips now. But it almost feels more muscular then joint. Like someone chuck baseballs at me.
I take two pills day but I do not know how many ml. Also my head is so fuzzy and I am exhausted. I must be herxing right?
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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posted
I'm taking Levaqin and Plaqunil-Maybe I'll see I can switch to Riphampin.
I tested positive for all three-but then neg for bart and erichilia (i had both forms of Erch) so because I am still testing positive for Babs and have classic lyme symptoms she doesn't know where to do-we done the mino, flagyl, doxy, mepron, malarone, septra, nasal spray, biaxin, and IV Rocephin for 15 months.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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some nausea, fatigue (drugged drowsy feeling) and some sharp toe pains...but really lots LOTS better than I had anticipated!
I am waiting for my period so I cried all day...but pretty sure that was the PUMPING hormones that are flooding my body...it's day 35 and still no period:(! geezes my hormones are wacked!
Anyways, thought I'd share....
Love & Smiles!
Fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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jamescase20
Unregistered
posted
Guys, the Dr B Tickguide says to take a proton pump inhibitor with levaquine to improve absorbsion profile. Prilosec (omepraZOLE) just so happens to be a ZOLE drug. Flagyl is a ...zole drug also for ex. These drugs have proven anti parasitc activity! Serious! Read about this. For sure it assists in killing H. plori. I am starting to wonder that perhaps the failed levaquine people are the ones who didnt use the proton pump inhib. with the floroquones. (levaquine among others)
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Took Levaquin for over 4 months and other drugs in the quinalone family
Key things to know about it:
Don't take any caffeine with it - can really make you feel anxious if you do
Over time it has the cumulative effect of decreasing GABA binding in the brain. GABA is a calming chemical; it also helps you sleep. Everyone I know who has taken Levaquin has this effect. Some take benzos to help calm themselves down. I couldn't take benzos so I took the following:
GABA (empty stomach) (can't remember dose) L-glycine (precursor to GABA) (empty stomach 500 - 1000 mg two times a day Seriphos (one 15 min before each meal) Magnesium (magnesium glycinate over 1 g a day)
At night TranquilNite (herbs to increase body's own GABA production) (2 gels before bed) 100 mg Lyrica (causes weight gain but gives stage 4 sleep - this drug has been a lifesaver for me - rxed by LLMD psychiatrist) 1 pill of SOMA alternating with 2 Baclofen (also rxed by LLMD psych)
My LLMD advised me to beware of tendon aches that stayed in the same place. That would be cause to stop the drug. Migrating tendon pain was said to be okay. I did very light Tai Chi warm up exercises to help with the migrating tendon pain. It really helped.
Hope that's helpful, D
Posts: 261 | From San Mateo, CA | Registered: May 2005
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had some gnarly headaches and new foot pains (few other things too, forget at this moment)...but if was a steady improvement....
increased energy! better moods! clearer head! less night sweats! anxiety lots better!
put my tennis shoes on for the first time in 2 years! not jogging/running, but walks...with energy behind them!!!started paddling my surf board down in front my house...:)doing more rigorous yoga.... smiles! just great!
each month, was better and better....
by 6 months I am so amazed what it did for me---
I herxed way more on Rifampin than Levaquin, so far...only 4th day on Levaquin...so that's an early statement...
I hope my improvement keeps up the way it has been...
Love & Hugs!
Fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Any more Levaquin experiences?
My LLMD DID prescribe Prevacid with the Levaquin to take twice a day. He also gave me a handout on the effects of the proton pump inhibitor,
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I just started taking the PPI with my Levaquin, didn't take it the first 6 weeks. Are you supposed to take it (the PPI) 2x/day?
Posts: 3528 | From US | Registered: Apr 2007
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adamm
Unregistered
posted
People here have reported taking it with no problems,
but nevertheless, you should be aware of the risks.
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