posted
Well I am off the babs abx and now on Levaquin to treat Bart. I never tested positive for it but those tests stink anyway. I do have the symptoms though. I hope and pray this works. It has been one day on Levaquin. Please post your experiences so we can have a real buddy list. Monica
Posts: 422 | From CT | Registered: Oct 2007
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I'm on my second time with Levaquin. Fortunately after my first treatment of bart, I read here that it's common to need to treat it a few times before it's totally eradicated or I'd really be bummed out now!
It's so much easier this time ... I'm tired from it, but not completely disabled like I was the first time!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Well thats good to know. A lot of the fear is just not knowing what to expect. Thanks
Posts: 422 | From CT | Registered: Oct 2007
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posted
It must be something with me and day three on a new abx. Last night I started crying hysterically and had overwhelming feelings of guilt about being a mom. Today I just feel like a truck hit me. I guess this means the drug is starting to work Oh boy!
Posts: 422 | From CT | Registered: Oct 2007
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posted
Yesterday my knees started to hurt very badly .... this happened a week into the Levaquin last time, too. Today they feel fine .... last time it lasted several days.
My cognitive symptoms are flaring though. I have to look at the calendar to know what day it is, I just can't keep track. I'm also getting a little OCD about the dust .... like why the blinds and ceiling fans are dusty .... but not enough to overcome the fatigue and clean them.
The fatigue may be lifting a little .... it's 11:15 and I'm already sitting upright, LOL. I think I might actually try to leave the house today.
My GI symptoms disappeared almost immediately after starting the Levaquin.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Congrats on stopping the Babs treatment! Now onto Bart.
How do you feel compared to before Babs treatment?
What Bart-isms do you notice?
I'm struggling in Co-Infection Limbo myself, so it is interesting and helpful to find out what others experience.
Best to you,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I started on bart treatment shortly after being on lyme treatment, but was on cirpo. Only could make it two months both times he tried, so I started over to babs with the zith, mepron and art.
But after that, it was back to bart treatment and this time, I'm on levaquin. I'm in about the 7th week. There are some struggles on it. I started out for the first month with just half dosage though...so now I'm up to the full dose and wow!
Yes, it might kick your butt, but I still say that if you have bart, it sure is strong and will help reverse things so you will KNOW you are on the right path. Good luck to you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Hi Everyone I had more heart palps and headaches with the babs stuff. I am not sure what symptoms are Bart but I have massive anxiety, foot pain, and jaw pain...aside from my lovely neuropathy. I hope it stops some of this...especially the anxiety.
Posts: 422 | From CT | Registered: Oct 2007
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Clarissa
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posted
Monica,
Anxiety was my #1 symptom before and during Bart treatment.
I needed up to 6 1 mg xanax a day just to get through the herxes.
I sobbed uncontrollably daily for 2 months. It was like living in a horror film.
Fast forward 5 mos later and I'm off treatment and, so far , so good. My anxiety is lower than it's ever been in my life.
It's very scary togo through it but it's definitely worth it. I would hope that your LLMD would give you some anti-anxiety meds to get you through the emotional herxes.
I would have jumped out the window without my Luvox and xanax. Be gentle with yourself because you will need some band-aids during this treatment!
CD57
Frequent Contributor (1K+ posts)
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posted
I'm in my first week of Levaquin (after 9.5 months after a Rifampin combo failed to eradicate bart). It definitely packs a punch, I have a lot of muscle pain. Immediate improvement in feeling "edgy" and sort of anxious.....yay!
I'm scared about this drug (don't care so much about the tendon thing, because those heal, but about the neurotoxicity of it). Are you guys?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thanks Clarissa I honestly do not know what I would do without the nice people here on LymeNet...you guys are amazing. Anyway you are right I am going through emotional rollercoasters I am not sure ativan is stong enough right now. I think xanax is stronger so I will have to ask for it. I am having weird heart racing stuff too..not babs but more racing? CD57..I am scared too but I need to get better for my kids.
Posts: 422 | From CT | Registered: Oct 2007
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Keep on going, girl! I haven't started Bart treatment yet, because the Mino is hard to take with sore ears and stuff.
I totally related when you said you had to keep going for your kids! Today I felt so dizzy and anxious. My six-year-old came home complaining of stomach pains and promptly threw up on me.
Well! I forgot my woes almost immediately and took care of him without focusing on my dizziness. (I also changed my shirt!)
Funny how our kids can redirect us. We need the energy to love 'em hard!
Keep on swimming, keep on swimming....
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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posted
Monica, it doesnt seem like you were on babs treatment for a long time? How long were you treating it?
Posts: 370 | From NJ | Registered: Dec 2007
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posted
Thanks Wiserforit. Hi Trish, I was treating babs for 4 months. I am not sure it was long enough either but we will soon see. I have no idea what symptoms is from what anymore...just hope to kill them all..
Posts: 422 | From CT | Registered: Oct 2007
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posted
Well Day 5 and I feel like crud...crying and tired and pain..oh and heart racing. This must be a herx.
Posts: 422 | From CT | Registered: Oct 2007
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posted
Thanks for the support. You are right it is definitely doing something..I feel terrible Day 6
Posts: 422 | From CT | Registered: Oct 2007
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CD57
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posted
I noticed immediate improvement of edginess/anxiety (which has been DEE-lightful) and floaters, but now have a lot of muscle pain, esp. back. Anyone else? Also today sore foot soles and achy jaws. Ugh!
Posts: 3528 | From US | Registered: Apr 2007
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posted
Yup..same for me. I have mro eneck pain, jaw pain, and back pain? Actually mroe pain all over..LOL. I have also been on an emotional rollercoaster...so hoepfully it is killing somethng and I am herxing. I even get heart racing. This is a strong drug so I am going to do my best to ride out the herx. When should we start to feel better
Posts: 422 | From CT | Registered: Oct 2007
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Clarissa
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posted
CD57 & Monica:
Are you taking Levaquin alone or with another abx? I was reading on Medical that Levaquin should be taken with another abx to reduce resistance.
I heard about that with Rifampin but NOT Levaquin? What do your LLMD's say about this?
Although I'm "in remission" with Bart, I'm not counting out the depressing possibility of relapse so Levaquin would be my next drug of choice so I'd like to know the amount daily and what other abx (if anything) you're taking it with.
Hang in there! Sounds like you're doing some awesome killing!
posted
Hi Clarissa I am on 400 doryx with the 500 Levaquin. I figure that should bring down Godzilla or me
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Clarissa
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posted
Thanks, Monica. I appreciate your feedback and will make a mental note "just in case." I've been off abx 3 weeks and things are going pretty well but my pms is still "iffy". I'm watching my symptoms like a hawk!
posted
Hi Wow, not doing well this morning...everything is sore especially my jaw and gums. Not good to be crying at 7:00 in the morning but I cannot help it. Please tell me this will go away soon. Sorry I am so depressed. Monica
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Clarissa
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posted
Monica,
You poor thing! I know your pain SO well...the crying alone is SO exhausting.
I won't lie and say it will go away "soon" but in Lymetime, it WILL be soon...6-8 weeks. Meanwhile, you MUST get your little paws on some anti-anxieties to get you through this major patch of killing which are causing these horrific herxes.
I CAN promise you it will STOP. Come the third month, I started seeing the light, stopped crying, seeing hope, gaining energy and humor.
6-8 wks is just a blip on the whole screen of your very long life and the healthy years ahead of you.
Epsom salts and baking soda baths helped me immensely. I bought a portable cd player (with batteries) as I dropped at least 2 in the tub with me (Lyme clumsiness) and listened to books on cd. It will help distract you...it was such a blessing for me.
You WILL get through this...you're being so brave and strong and I know the darkness, the anxiety seems endless and hopeless. You're killing those *******s and they're none to pleased.
Give them the finger...you can make it!!!
Bonus: Crying is another good form of detoxing so give them your OTHER middle finger!!
We're ALL here for you... and I'm proof that there's life on the other side of this...not too far away.
posted
Hi Bart Buddies How is everyone doing? I am hanging in...I am focusing on the end point as much as I can. How long is normal to stay on the levaquin to kill Bart? Thanks
Posts: 422 | From CT | Registered: Oct 2007
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CD57
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posted
Hi Monica! I'm in my second week, hanging in there. Lots of muscle pain all over, ugh. I feel like an old lady, you too?
I have had friends stay on Levaquin anywhere from 2 months - 7 months. I don't think there's a magic bullet really. It (bart) may also have to be treated more than once (this per Dr S's new book). I know Six is on her second go-round.
What are you taking your Levaquin with?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I'm here too. Good luck to all. Taking levaquin (half dose 250 mgs) with 200 mgs of mino. Went through a bad patch the first two weeks but have settled down a bit. Will probably need to bump it up to 500 mgs soon.
God I hate this so much!
Is any one pulsing levaquin or taking it daily?
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
Yes, I am on my second go-round. First was 12 weeks followed up by 6 weeks of Rifampin. A couple months later, I'm back on it.
The first six weeks were hard the first time around .... the worst pain I had in Lyme treatment.
The second time around I felt better right away, then had my regular herx, which was harder than normal .... longer, too. Now I'm feeling better already even with this upper respiratory infection that's going around.
Hang in there! There is no set time, but it will start to make you feel better. In the meantime, light some candles and take a nice warm epsom salt bath.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
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posted
All buddies, a question for you: When I was refilling my minocycline rx the other day the pharmacist came out and said that my mino was contra-indicated with Levaquin b/c the mino is bacteriostatic, which prevents the stuff from replicating, whereas the Levaquin blows it up. But the Levaquin can't blow it up unless it's replicating.
Would another abx, like a macrolide, be a better choice to use w/Levaquin? I know Dr Burrascano has treated with Levaquin/Zith or Biaxin.
Thoughts?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Isn't it true that the tetras become bactericidal when taken in large doses like we do with Lyme?
I have taken Levaquin with a tetra both times .... I know it worked the first time around and it seems to be working this time as well.
Sometimes the LLMD's intentionally use interactions .... they have learned a lot from clinical experience. Though the pharmacist may be correct on some level, often things are done unconventionally with Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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cantgiveupyet
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posted
Ive been told you cant mix levaquin with the macrolides, they dont work well together at all.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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CD57
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posted
Yeah, so I've learned....about the unconventional mixes.... , and yes, the tetras do become bactericidal at the larger doses.
But I know I asked Wildcondor about her (successful) bart treatment and she was a Dr B. patient. She was on Leva/Zith and then Cipro/Biaxin. Food for thought.
I know when I was on Zith last year I had bart symptoms which makes me think it was hitting bart. So why not two bart drugs, which is the idea, to keep the bart from getting resistant?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hi CD57 and Everyone I am taking 400 mg doryx and 500 Levaquin. I know several others that have taken this combo and I heard two doctors speak about it recently....so I hope to God it works. I think the doryx is bacteriacidal at this dose anyway. Does Levaquin actually kill any Lyme or is it only killing Bart? I thought only Bart. I am completely wiped out today and have pain all over...so it is doing something. I am awaiting the day that I can make it a whole day without crying or ativan. I am much more brain fogged too if you know what I mean. It is now 12 days on Levaquin..whew!
Posts: 422 | From CT | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
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posted
up==how are people feeling?
Posts: 3528 | From US | Registered: Apr 2007
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posted
I started doxy a week ago and am feeling HORRIBLE! I don't think this is a good sign that the doxy is causing such a bad herx .... is it?
I started it last Wed .... Saturday I was cleaning the house, painted our back door, etc. Sunday afternoon I crashed and have spent most of my time in bed since.
I had initially started mino with the Levaquin ... but once I got back from Florida, changed to doxy. I didnt' expect it to hit me so hard .... especially since I was symptom-free a few weeks ago.
How's everyone else?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I feel terrible! I have been really weak and crying all week and it is making me nuts. I am supposed to go to the big Lyme Seminar tonight and I am not feeling well and still crying. Maybe they can use me as the clinical show example..LOL. Gums and jaw, and neck...literally everything hurts now. It has been 15 days on levaquin and 3 weeks on 400 doryx. I sound like I am in alcoholics anonymous
Six, I am sorry you are feeling crappy again. the doryx is strong stuff...and with the levaquin you are in a herx abyss...like me....not good.
Posts: 422 | From CT | Registered: Oct 2007
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posted
I was on Levaquin for 7 weeks and no longer could tolerate the pain it was causing or something was causing pain in my back, neck, shoulders. THe pain was not there prior to starting Levaquin and it was becoming unbearable to deal with.
I figured I would try stopping Levaquin to see if the pain let up. It has been 6 days since stopping and the pain in the back, shoulders and neck is a bit better but still fills all jacked up. I felt horrible the whole time I was on Levaquin. Had to deal with a horrible head/chest cold that lasted 4 weeks with hacking stuff from my lungs and nonstop coughing and bart herxing on top of that. Have been pretty house bound for the better part of it all.
Oddly enough Levaquin helped with my air hunger. It is returning now that I stopped Levaquin. THis is stranges because air hunger and lung issues is attributed to babesia. So don't know. I kept saying during Levaquin treatment that my lungs are better and my air hunger is gone. Ughhhhhh now it is coming back.
Six- didn't you have your air hunger return after going off of Levaquin??? Is this from bart or some blo???
Posts: 188 | From ID | Registered: Jan 2007
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posted
I had some air hunger that didn't go away until Levaquin. My more severe air hunger seems to be babs related, but my shortness of breath (just a little different) seems to be bart related.
I had that severe pain on Levaquin, mine lasted six weeks. When the pain started going away, I progressively got better. I would talk to your LLMD about the possibility that it might be herx-related.
I found epsom salt baths to be helpful. Yes, it was the worst pain in all of my treatment. Hang in there, if it's a herx, it's worth it to keep working on the bart.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
hi everyone,
i'm thinking i might have bart, even though my fry test came back negative. i have lots of bart symptoms.
i'm scared of levaquin, so i'm wondering what abx people have taken with rifampin? i know rifampin alone isn't recommended..
posted
Oh Gosh me too Six...it was day 4! Has anyone had the nonstop crying on levaquin? Did anything help? I am doing the baths and they help.
Posts: 422 | From CT | Registered: Oct 2007
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Xanax is the only thing that got me to stop crying but I was on Rifampin & Zithro.
Hang in there, Monica. I can tell you're a fighter!
posted
Boy this is much worse than any treatment I had so far. I had to take half the levaquin last night or I would have jumped off the roof. I am going to take half for a couple more days so I can make it through this. I am also going to ask for Xanax today. Thanks
Posts: 422 | From CT | Registered: Oct 2007
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Clarissa
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Little better with crying stuff on half teh levaquin. May try the whole thing again tomorrow. Just needed a crying break.
Posts: 422 | From CT | Registered: Oct 2007
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CD57
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Member # 11749
posted
I switched from mino to doxy and feel anxious and edgy today....ugh!
Posts: 3528 | From US | Registered: Apr 2007
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posted
Yeah that is what doryx does to me also. I hate not being able to go in the sun. I have not felt this bad for a few months, I just hope I am not getting worse.
Posts: 422 | From CT | Registered: Oct 2007
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posted
Doxy is tough. I've been herxing like crazy since switching from mino to doryx a week and a half ago. I'm kind of surprised I feel this bad because I was feeling pretty good before the change.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hey Six I cannot stand not being able to go in the sun on doryx. Still feel like crud...this is so getting old.
Posts: 422 | From CT | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Anyone else get a little tachycardia? I had this pretty bad last year during herxes, but then it disappeared...now its back, but not as bad....
Posts: 3528 | From US | Registered: Apr 2007
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posted
Yes I have it every time I change my meds or up a dose of doryx. It was very bad when I first started taking the levaquin also..not sure why.
Posts: 422 | From CT | Registered: Oct 2007
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cantgiveupyet
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Member # 8165
posted
Does anyone think 250mg of levaquin is enough? I only weigh barely 100lbs now.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Hi I would ask the LLMD or pharmacist that question. I will tell you 500 is killing me and I weigh about 133.
Posts: 422 | From CT | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
How are you all doing? I am having a lot of neuro stuff going on: edgy/irritable, disorganized, depressed, doubting my doc and whether this treatment is working, word finding, memory, etc etc. I'm almost a month into Levaquin+mino+Bicillin 3x/week. I felt immediately better on my second day of Levaquin, just huge. Now all the symptoms seem to have come back.
Is this a herx or am I not responding?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hi I stopped the levaquin..told I had levaquin insanity..LOL. It was making me really depressed and nuts. What do you know about Rifampin?
Posts: 422 | From CT | Registered: Oct 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Monica, what does Levaquin insanity mean?
Posts: 3528 | From US | Registered: Apr 2007
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posted
Hi I was just really really depressed and crying non-stop and thinking horrible thoughts. It stopped within 12 hours of stopping levaquin. Trust me I still cry and always depressed but not like three days ago.
Posts: 422 | From CT | Registered: Oct 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
sorry to hear that Monica, that sounds horrible. Im glad that it stopped once you quit the leva.
Anyone seeing any improvements...
Interesting about the macrolide/fluro combos, it seems LLMD are often all over the place with how to treat this bug. sigh.
i took zmax at onset , and had a horrid reaction, all symptoms increased and dr thought allergy. thing is after about 12 days the dizziness went away...so it was either waxing and waning, yeast or it killed something.
I just wish I could be one of the ones getting better.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
Hi all! I was diagnosed with Bart by Fry labs and that was the only infection I was able to find so far.
So I'm taking Zithro and mycobutin for two months now. At first I had herxes every 3 days and symptoms were fluctuating a LOT - it was very stormy.
Now everything seems to have calmed down and I hardly ever herx anymore but I don't feel ANY better at all than before I started!
I wonder if it's normal or if abx stopped working.
Could Bart develop resistance already? Did someone have it happen like this?
Posts: 59 | From Boston | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
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posted
what is Mycobutin? everyone is different. no telling what is happening, but you haven't been on that combo very long.
Posts: 3528 | From US | Registered: Apr 2007
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posted
mycobutin I think is the same as rifabutin (a brand name I guess).
I've searched around and it does seem that some people herx a lot in beginning, go back to ground 0 and slowly make their way up.
Anyway - looking for a LLMD who actually knows about Fry labs right now... Appears to be trickier than I thought.
Just don't want to hear another lecture as to how I really need an antibody test to prove anything and how my symptoms are not related to whatever the slide shows (I have classic fatigue, muscle twitches, feverish feeling, chills etc...)
Posts: 59 | From Boston | Registered: May 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
hello, how are people doing? I am having a tough day. I posted elsewhere re: flaring cognitive/mood/psych symptoms, plus twitches, insomnia, hand tremors. ugh. It seems to vary by the HOUR how I feel! anyone else? I get this scary gloom-and-doom feeling like I'm not going to make it.
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
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posted
Up--how are the bart buddies?
Posts: 3528 | From US | Registered: Apr 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
horrible tonite- thought i was making progress, but no it seems it was just a fluke.
growing tired of it.
how are you?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I'm here too. Good luck to all. Taking levaquin (half dose 250 mgs) with 200 mgs of mino. Went through a bad patch the first two weeks but have settled down a bit. Will probably need to bump it up to 500 mgs soon.
God I hate this so much!
Is pulsing levaquin or taking it daily?
After the doctor stopped my IV Rocephin after only 4 1/2 months. I didn't know how well I was until He stopped treatment. After about a week bam everything was back. Joint pain, Burning, hard to breat etc. He treated Canadida for 2 weeks. I started Lev 500mg and Rif 300mg 2x a day on May 11. It right away made my body burn more. It had a deep burning in my joints, muscles, etc. Causes stomache upset for about 18 days or so. Called the Doctor on 5th day to see if that was normal. The told me to stop meds but I continued and the next day I started feeling a little better. An have continued. My doc said 21 days he does that with everything. Had a refill so filled it. I also an taking Fluconazole 200mg at the same time. The only thing when I first started I was up for two days. Then slept and then up for another 24 to 36 hours. It has given me the energy to sit up instead of laying down all the time. I am concerned that he's not treating me for any length of time for Bart. For Babs he had me do a 21 day round. That doesn't seem to be long enough. Has any one been on this same treatment?? Isn't 21 days way to short??
Thanks for listening.
-------------------- Theresa Posts: 16 | From Florida | Registered: Jun 2007
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