posted
Iam on levaquin right now for bart and lyme and i feel like i am going to die. My heart rythm is all over the place, my chest is killing me, i hurt all over,parts of my body are going numb and my hands and feet are ice. Its like the flu from $$$ but worse.
Is this a herx or am i really dieing. I am in my 5th week of tx for bart, 3 moth total for lyme and not going anywhere but downhill lately. I am 18 and dont want my life to be over.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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posted
Not good news Sorry to hear of your misery.
There are many who simply cannot take levaquin. It can cause muscle cramps, and joint pain which makes walking very painful.(painful just doing nothing!) For some, it can take a long time for that pain to go away even after you stop taking it.
I am not a doctor...but I would urge you to get in touch with your doctor and let him know of your pain. Do a google on quinolones...which is the class of drugs that levaquin belongs to.
Good luck...your life won't be over for a very long time. Keep the faith! You WILL get better.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
me and my doc are very aware of what levaquin can do to tendons. That is not my major problem. I just fell really awful, i dont hurt when i walk, its my chest pain and irregular heart beats that scare me to death I have more muscle pain then tendon pain i think.
I think i am herxing. I always get cold hands and feet when herxing. I have just never herxed this bad
Does anyone know if babs could be the reason for chest pain chills and bone pain, Air hunger. I really dont hope i have that to, i tested negative but its suspicious to me Then i need the malaria drugs also.
Ijust give up on going to the ER anymore cause they dont get it
Posts: 82 | From Northeast WI | Registered: Oct 2005
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I'm sorry you feel so bad. We've all been there at one time or another. I know there have been quite a few times when I was convinced I was dying.
I would definitely contact your LLMD like nan suggested. It does sound like a herx, but best to be safe. I've never been on levaquin, so I don't know about dosage, side effects, etc. Maybe you can back off for a few days or adjust your dosage?
When I question whether I'm herxing or my symptoms are worsening, I back off for a few days. Usually my major symptoms resolve, and I know it is a herx.
Hang in there. Your life isn't over, and you will start to feel better
Wishing Wellness, Jewl
Posts: 79 | From Chicago, IL | Registered: Sep 2003
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* If you experience any of the following serious side effects, stop taking Levaquin and seek emergency medical attention or contact your doctor immediately: � an allergic reaction (difficulty breathing; closing of the throat; swelling of the lips, tongue, or face; or hives); � seizures; � confusion or hallucinations; � irregular heartbeats, chest pain, or fainting; � liver damage (yellowing of the skin or eyes, nausea, abdominal pain or discomfort, unusual bleeding or bruising, severe fatigue); or � muscle or joint pain.
The question now should be asking yourself is "Do I trust Pharmas testing and recommendations, or my current duck?"
Posts: 33 | From Oregon | Registered: Sep 2005
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posted
i did contact my llmd and he wasnt sure what was happening but thought it was a herx and told me to back off a little. Well its only one pill a day so i will skip it for a day or two.
Let me tell you one thing, if it is a herx that little pill can really pack a punch.
You would think 500mg wouldnt do that much. I know when i first started tx i was on three different antibiotics at 1500mg each. But i guess it has to do with the time release of the drugs and how long they stay in the system before being flushed out.
I still cant believe how underated and ignored this disease is by so many doctors. Back when i was healthy i was told that if you get lyme disease your knees will hurt and you have to take pills for a couple weeks, wow was i wrong and more people need to be educated about this disease starting with the dumb ducks, And i plan on doing it no matter how sick i am.
I remember going to the ER when starting tx and the doc told me that my lyme test just showed that i had lyme at one time and told me that my immune system took care of it. He said that i should stop being suck a baby, and that nothing was wrong with me. Well i hope that doc gets a lump of coal for christmas.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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posted
yes my llmd said that levaquin can cause increased QT intervals on a EKG. Last time i was there he had one done and said it looked good.
I have had the chest pain and skipping beats all along, it gets worse when i herx sometimes i think thats whats going on and i just need to calm down a little.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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posted
I'm suppose to take 500mg Levaquin a day with Ceftin and Diflucan, but I got really sick the first day I took the Levaquin. I only took half of what I was suppose to. I felt really sick from it. My blood pressure went up, my head felt really weird, and I felt really weak. My blood pressure was my biggest concern. My heart rate also increased. It kind of scared me.
I have not seen a LLMD yet, but I do have an appointment with Dr C. I think I'll hold off on the Levequin until then. I'll continue with the Ceftin and Diflucan. Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
One of the best things you can learn about this whole process is if you are herxing so bad you can't stand it, back off of everything.
You will feel very bad at times.
DON'T GIVE UP.
Take one day at a time.
You WILL get better.
Bug
-------------------- Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom Posts: 343 | From Northcentral Iowa | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi StuckonLyme *waves form Levaquinland*
I took 2 1/2 weeks of a low dose of Levaquin and then when I got used to it raised it slightly. At the 5 weeks and 2 days, point, it was too much for me.
I called the doctor and stopped for a rest. She suggested I stop for 2 weeks and restart.
I restarted it last week. I'm having very little tendon pain (except for the very first week). It's been mostly bone/muscle/headache/joint pain and loads of neurological stuff. Chills without sweats. Palpitations and feeling like I can't breathe every evening around the same time.
Majorly sensitive to everything and everything.
So that's a really long way to get to what happened yesterday. I was in a complete panic about the palpitations and sensitivity and was lying on my bed pretty sure I was dying.
And then it hit me... I was twitching inside and out, everywhere all at once! Inside my head, in my ears, all my internal organs, my muscles everywhere. Including chest and neck.
Certainly any suspected heart problem needs to be checked out but for me the panic stopped when I realized this.
I'm not saying it's the same thing but it's a possibility.
I have been on other meds before but never anything from this class of antibiotic. It is hitting things nothing else has. I'm taking that as a good sign and am willing to find a way to make it work.
I've decided to pulse it 4 days on and 3 days off. I don't know if you can do that with Levaquin but the doc said, ok.
I'm not the greatest cheerleader and am in no position to really help but wanted to let you know that you're not alone doing this.
I vote for taking a break, also, I just take a really long time to get to the point.
I hope you feel better soon and hope to meet you there.
Many hugs!
blah, blah, blah not a medical professional, blah, blah, blah... as if that wasn't obvious.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey there. Im having a rough go of it too today. Im fairly young 30 and thought for sure i was dying this week and especially today.
Please, please, contact your LLMD...they need to know about this. But until then stop everything you are taking. You need a break.... I did this and i can finally sleep at night, because i can breathe better.......i didnt loose all the scary symptoms...but i feel much better then i was feeling. This is my 2nd day off. Tomorrow i start back again...per my LLMD.
This disease is very very scary....i think what makes it the most scary is that the abx that is hurting you is killing the lyme at the same time.
Hang in there ok....your not alone in this fight.
Hugs and strength.
-------------------- "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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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Stuck-
Just want to say that I am struck by your maturity. That you are taking charge of learning about lyme and fighting for your recovery.
My daughter says, Take the antibiotics and you will feel like crap on crap on crap.
Then you get better.
Not to make light of your herxing. Saying a prayer for you!
posted
Thanks char, although i am only 18 i feel like i have matured greatly over the past year.
Last march i became extremly sick an d lost 40 pounds in two weeks. And i dint have 40 pounds to loose. I thought i was a goner. It took me until August to finnally find out that i have lyme and bartonella. And let me tell you it wasnt a fun road.
I have made a promise to God and myself that i am going to do everything i can to get well, EVEN THOUGH THIS DISEASE SCARES ME TO DEATH. And if i do get well which i think will happen someday,i am going to become a doctor and help people through this awful disease, and also fight to get the medical community to realize how awful this disease is.. and i think the more i learn about it the more i will be able to help people in the future. And you can never gain more knowlege that going through something first hand.
Posts: 82 | From Northeast WI | Registered: Oct 2005
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posted
I hope you get better real soon so you can start med school to become LLMD. If I was your age I would do the same thing. I'll have to settle for being an activist when I get better.
At this time last year I was freezing all the time, my whole body felt like it was vibrating and I did not have energy to sit up. What a differnce a year makes. Today I worked a full day (my whole staff has the flu so I'm doing extra), my main symptom is feeling like something is crawling on my back (not a big deal). A few weeks ago my temperature stabilized and my hands and feet warmed up. I'm still on antibiotics but I'm vastly improved. The worst part was the first month on stronger drugs.
Hang in there and be sure to keep a log/journal of your symptoms. It helps to bring to LLMD appts and also to see progress.
I've gotten great relief from Podi patches. have you tried them? www.akgnaturals.com
hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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JillF
Frequent Contributor (1K+ posts)
Member # 5553
posted
I was on Levaquin and it was horrible.
It got to the point where I could not stand up w/out my husband's help. It was excruciating to walk up the stairs. I almost fell to the floor in pain from getting out of bed.
My knees hurt so badly.
Then the arms started to hurt. I could barely put on/take off my shirt. Washing my hair was so painful.
My dr took me off and within a week, all the pain was gone.
Posts: 1485 | From USA | Registered: Apr 2004
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