feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I started Levaquin 2 days ago. 3-4 hours after my first dose, I experienced a huge 'high'...sort of like I was on speeders or something...though I have never taken anything like that!
This was followed by increased headache and very stiff and painful neck tendons and painful shoulder blades....this all became worse with my second dose....the only thing that went away was the 'high'.
My one symptom that has been with me everyday is a fairly severe headache..the neck and shoulder blade pain is always there as well but not unbearable.
so, is this a worsening of my symptoms? Can it happen this quickly after starting a new med? My doctor warned me that I would hurt like 'hell' and he was right!
Just didn't expect it so soon....anyone else get immediate reactions to levaquin?
Thanks in advance, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
Nice of your doctor to warn you .... mine didn't! It was horrible! I hurt very badly for 6 weeks, then steadily got better ... head cleared. Felt great.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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linky123
Frequent Contributor (1K+ posts)
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posted
Be careful with this stuff. I was given IV levaquin in the hospital last year for a kidney infection and got chronic inflammation in my left heel.
Mg chelate amino acid, Soloray brand, has helped. They carry it at Whole Foods.
Worked great on the kidney infection though.
Posts: 2607 | From Hooterville | Registered: Apr 2009
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tick battler
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posted
My husband got shooting head pains within hours of taking it. When my kids were put on Rifampin (another bart drug), they had increased symptoms and said "everything hurt" for a week and then got much better.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
As soon as I started (low dose 250 mg), I got tendon pains badly after one day. I stopped and waited til the pain lessened and continued taking it after 3 days. After 4 weeks I had to stop completely, because joint pains became too strong and after one week I got severe tendonitis/joint inflammation all over my body, numb limbs, icecold feet and feeling terribly "out of it". This still lasts (2 weeks after stopping) in various degrees and I consider myself as "floxed" now.
Sorry, don't want to disencourage, but I feel, it's important to inform.
By the way, I took tons of VitC and Mag alongside.
Posts: 269 | From Germany | Registered: Jul 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you guys.
Tickbattler, did your husband end up riding out the Levaquin? If so, how did he do?
I am taking high doses of both magnesiumand vitamin c which is said to help w/ the tendon stuff....Thanks Linky for the heads up though!
Six, how did you push through six weeks of torture? Did you take anything for pain? Read that nsaid's aren't a good thing to take with Levaquin?
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
Frequent Contributor (1K+ posts)
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posted
ooooh kadee! so sorry that this happened to you! It is always such a hard call to make. Thank you for sharing your experience. Hope that the bad effects clear for you soon!
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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tick battler
Frequent Contributor (1K+ posts)
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posted
Yes, my husband did improve on it for a month and then we switched docs and stopped taking it. He took it again several months later for a month with some slight improvements noticed. Then again one more time for a month with another LLMD, but at a higher dose (750 mg) and then a few weeks into it he started getting leg muscle/tendon pains. I told him to stop it b/c of what I had read here...his LLMD thought it was die off but I think she was wrong, b/c this was something new unlike his previous "herx" type reactions.
I think it was one of the best meds for him as far as reducing symptoms. I wish he could take it longer but we don't want to take a chance. He is trying Cowden now but we might consider trying Factive down the road, which I think is in the same family.
Sounds like you are having a herx on it...that is a good sign! I hope you see good progress...I do think it could take at least 2 weeks to see improvement, maybe more.
By the way, have you found an LLMD you like? Are you still seeing the woman in MI?
Best wishes,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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feelfit
Frequent Contributor (1K+ posts)
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posted
tickbattler pm sent
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I just took my last dose of Levaquin - 500mg.'s yesterday.
I actually had to take it for a bad sinus infection I got.
I on on Biaxin for Lyme but that was not helping the sinus infection, so I had to stop the Biaxin and go on Levaquin for 10 days.
ONly made it to 7 days....By day 4 I was sooo out of it on this stuff. It cleared my sinus infection in a day but boy is it a tough med - for me anyway.
I feel like a train wreck...head pain, eye pain, anxiety, flu symptoms, horrible fibro. muscle pain - like my muscles were on fire and skin sensitivity, eye twitching came back,and off the wall exhaustion..
Now, that could have been cuz I went off of my Biaxin or maybe the Levaquin was hitting on a co. I did not know I had/have or maybe it was just the side effects of the Levaquin. TG
Posts: 376 | From New Jersey | Registered: Jun 2009
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canefan17
Frequent Contributor (5K+ posts)
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posted
How does everybody have "bad" reactions to levaquin?
If a healthy person took levaquin there's a great chance these "side effects" wouldn't occur.
When do you guys possibly say, "This is a herx and I must push through it."
Most LLMD's use Levaquin to treat bart with good success.
I'm more curious than instigating.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I agree Canefan. Normal people take most antibiotics with good results...i.e. they feel better!
Not so with us TBI people. I think the lev hit exactly where I have sx and made them flare....going to continue for now.....with cautious optimisim.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
feelfit,
Good idea. Drink lemon water, detox well, and rest.
Goodluck to you
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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quote: If a healthy person took levaquin there's a great chance these "side effects" wouldn't occur. Most LLMD's use Levaquin to treat bart with good success.
There are people, who had disabling side effects for years after just one dose. And nobody knows in later years, how much cartlidge dammage there will be due to chinolones. Taking this drug means playing Russian Roulette.
Yes, it helped my Bart symptoms a lot. But the price was high - and symptoms are coming back...
Posts: 269 | From Germany | Registered: Jul 2009
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lymielauren28
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Member # 13742
posted
My first LLMD put me on Levaquin a long time ago. Within a week I was phsychotic and having thoughts of suicide. I was sooo out of it. I called my Mom and told her that I was going to jump off my 6 floor balcony - NOT the norm for me. My mom called my doctor and he had me stop immediately and told me not to ever take the fluoroquinolones again. He said depression is normal for Lyme patients on them but not suicidal tendencies...
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Sorry... but I just don't believe that all of these drugs cause us all of these problems. Just my opinion.
I felt suicidal while taking amoxcicillan 5 months ago. Had a MAJOR herx.
But growing up(pre Lyme) I took amoxcicillan for many things and never wanted to kill myself.
Suicidal thoughts just come with depression.
It's an imbalance of norepinephrine and epinephrine, dopamine, etc etc
Neurotoxins/herx can disurpt these signals in the brain and cause the worst neuro symptoms.
Do you take 5HTP? Any sleep meds? These can screw the whole damn neuro-function up. Especially when herxing and starting new abx's.
I don't blame you for getting off the drug (obviously being suicidal is something to take seriously)... but I disagree that the DRUG is causing suicidal thoughts.
Again... just my opinion.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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MariaA
Frequent Contributor (1K+ posts)
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posted
quote:Originally posted by lymielauren28: My first LLMD put me on Levaquin a long time ago. Within a week I was phsychotic and having thoughts of suicide. I was sooo out of it. I called my Mom and told her that I was going to jump off my 6 floor balcony - NOT the norm for me. My mom called my doctor and he had me stop immediately and told me not to ever take the fluoroquinolones again. He said depression is normal for Lyme patients on them but not suicidal tendencies...
wow, that's horrible. I had suicidal thoughts and other personality changes on Biaxin, but they were temporary. Once i recognized the problem, I quit the drug for a week or two, and when I cautiously re-started, I was able to take the drug for months longer without any repeat of the depression. I don't recommend that anyone else take any risks with re-starting a drug that might give you depression as a side effect, but I think that what happened to me (taking a break meant I could re-start it safely later) was not completely unusual.
Usually we hear these stories about babesia treatment, and people blame either Mepron or Biaxin or Artemesinin for the depression, but there's no real evidence to explain what exactly causes what. I was lucky and was able to take my same medications without incident later.
-------------------- Symptom Free!!! Thank you all!!!!
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
MariaA,
I know one things for sure... all of these abx's, along with die-off are very taxing on the body. Herbs too (especially art)..
When this happens the entire body has trouble sending and receiving messages clearly. The communication from cell to cell, organ to organ, gland to gland is interrupted.
Combine that with the obvious die-off you'll have and it's a recipe for depression and emotional destruction.
Talk to people in remission... they ALL went through it. It's temporary.
I recommend being around family and friends while going through these rough times.
I had my parents pick me up and take me to Houston a few months ago because I was starting flagyl treatment and KNEW sort of what to expect.
I didn't want to be alone during the rough herxes.
And I feel very bad for anybody who does it alone. Must be SO hard.
But keep on pushin through. Gotta visualize the end result (remission).
Visualizing has kept me emotionally stable.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
Hey feelfit, Its a good drug. Don't even research fqresearch.org waste of time. Don't read about the lawsuits involving Levaquin ect ect.
Your doc has you on it for a reason. And yes the increased symptoms tells you that its hitting the disease hard. It can hit you the first day for sure.
I have me a years supply here and have been rotating this in my antibiotic regime for the past two months.
My biggest problem with the drug is the gittery feeling you get like you described, increased agitation, insomnia. I don't know if those are symptoms of the drug or just this stupid disease.
From Dr S book: "All the fluroquinolones seem to have activity against Bartonella/BLO, but Levaquin seems to be the most effective. The dosage is 250-500 mg once a day. It is best to take Levaquin on an empty stomach (or with minimal food due to gastrointestinal side effects).
Also, it is important not to take minerals like calcium, zinc, iron, and magnesium within several hours of the dose of Levaquin, because these minerals will bind Levaquin and render it useless.
Except for the tetracycline antibiotic group, the fluoroquinolones are not generally used in combination with other antibiotics.
Levaquin is usually very well tolerated. The major adverse reaction that may occur is tendonitis.
This complication is not common, but when it occurs, the medication must be stopped for a few days to allow symptoms to resolve. It can then be restarted at a lower dose, but if tendonitis recurs, the medication should be stopped.
The mechanism for tedonitis is not clearly known, but magnesium deficiency may play a role in some patients. For this reason, I recommend that Bartonella/BLO patients ideally take 600-1000mg of magnesium for two weeks prior to beginning Levaquin thearpy.
Once Levaquin is begun, the patient should continue on magnesium being careful to take it three (or more)hours before or after the dose of Levaquin".
Hope this helps and good luck for you in this treatment.
KA
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thank you for all of the valuable input here folks.....so the story goes, we're all different in the way that we respond.
I cut my dose to 1/2 of a 500mg tab this a.m. and am tolerating way better. Someone told me that I should ramp up and they were right AGAIN
BigStan, thank you for posting the helpful info above. I am glad that you feel that you have had a good response....esp. since a lot of our symptoms are the same and we seem to respond slowly (if at all) to treatment....
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, be sure to follow the instructions above regarding magnesium. Otherwise, the levaquin is made useless.
My lyme doc told me to stop magnesium when I started levaquin.
Burrascano says to load magnesium prior to starting levaquin. The advice above is good regarding the loading of magnesium.
It may be too late for you, but others can benefit from knowing this. The discussion about magnesium and levaquin has gone on for quite a while on this board.
From p. 25:
"Levofloxacin is generally well tolerated, with almost no stomach upset. Very rarely, it can cause confusion- this is temporary (clears in a few days) and may be relieved by lowering the dose. There is, however, one side effect that would require it to be stopped- it may cause a painful tendonitis, usually of the largest tendons. If this happens, then the levofloxacin must be stopped or tendon rupture may occur. It has been suggested that loading the patient with magnesium may prevent this problem, and if the tendons do become affected, parenteral high dose vitamin C (plus parenteral magnesium) may afford rapid relief."
Posts: 9931 | From Maryland | Registered: Dec 2007
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feelfit
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posted
Thanks TF...also useful information as always! Nice to have you back Posts: 3975 | From usa | Registered: Aug 2007
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lymielauren28
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Member # 13742
posted
Canefan...for me personally I think it was more of a drug reaction than a herx reaction. I've been on every single other antibiotic out there and while they've all given me more symptoms to one degree or the other, depression included, none of them made me suicidal.
Some drugs are also known to cause depression. I read an article the other day about troops that have lingering depression after taking anti-malarials - it is a side affect of the drug.
I'm NOT suggesting that everyone who experiences depression on Levaquin is having a drug reaction and should stop...it is most likely a herx. But when a normaly positive, upbeat, life-loving person has to fight to keep from flinging their self off of a balcony alarm bells should go off...that's all.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
I took levaquin and ciprofloxacin long ago and long before the tick devil got hold of me and I felt so antsy like about to have a panic attack or epileptic seizure or something and that obviously was a class eg quinolone specific type of drug reaction. Premedicating with something that relaxes mind and muscle both, like magnesium and rebuilds collagen . . . makes sense that it might help.
Sleep well all,
Beachinit.
Posts: 448 | From Downeast Maine | Registered: Jul 2009
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i'm taking levaquin since 3 months now for brain fog. i have minimal muscle pain, but no tendon issues. can make sport etc. Posts: 371 | From velocity of light | Registered: Sep 2009
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posted
canefan: suicidal thoughts are an officially listed side effect of many medications. They show up in very controlled trial of some drugs. They are caused by injury to the brain, normally temporary damage. I have lost two friends because they committed suicide due to side effects of medications. I talked to one of them several times during his last day, but did not manage to convince him to go on. He was a succesful artist and musician, he had never had a depression or suicidal thought before, until he took a quinolone. His thoughts during the whole ordeal of his bad reaction to the quinolone are written by him, have been read by many thousands of people and on those letters he blames exclusively the levaquin of his state and desire to take his life.
Posts: 94 | From canada | Registered: Nov 2006
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merrygirl
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posted
I took levaquin and I hurt like hell!!
FOr a long time. no permanent damage that I know of.
good luck and hope it helps you
Posts: 3905 | From USA | Registered: May 2007
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nefferdun
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posted
If you look up the side effects of levaquin, tendon rupture is one of them and some very normal people have ruptured their tendons using it for just a short period of time. The law suits against levaquin are only for those people that had tendon rupture within three months of using the drug. It does not cover people like me that had tendonitis for 7-8 months.
I took levaquin for five weeks and it was the best drug for whipping the bartonella but suddenly, at five weeks I develped tendonitis. I could tolerate the insomnia and even the emotional outbursts that brought me to the floor in tears. I figured that was just herxing and I would get through it. But when I felt something snap in my shoulder as I was just reaching out to pick something up, that was different. It was not lyme or bartonella. I am very familiar with those aches and pains. It was sharp like a knife and my shoulder actually jumped like a rubber band.
I wish I could have taken it. I wish I was better prepared with mineral etc. It really cleared up the bart but unfortunately I was floxed from it and could not tolerate any antibiotic after that for 8 months. I gave up and went on herbs but the herbs failed and one year later I was right back where I had been the year before.
Luckily I have been able to tolerate the drugs this time.
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