posted
I know levaquin has been mentioned a lot through the board... the horror stories and the sucesses.
I have started taking it 4 days ago, and my entire body aches. It doesn't feel like tendons... just everything hurts.
I have all the symptoms of a normal flare too (neuro, depressed, eye pain... etc etc)
Perhaps I read too much - and immediately thought "tendons!" but its really everywhere -and moves around.
Knee and ankle hurt some consistantly - but for me, that is nothing new (comes and goes - might even be bart-related pain).
Just looking for some thoughts, what a herx is like on this.
I know herx times vary (and how long they last). I know levaquin is a different kind of drug.
Also looking for what would be considered "red flags" that I need to stop this medication. My doctor was very vauge when I asked about it. He said "anything worse than normal".... well, wouldnt that be a herx??
It's hard for me to differentiate herx/side effects!
I really think I want to "hang in there" with this... I think this drug might help me. Just some things scare me....
thanks all-
Posts: 7 | From upstate NY | Registered: Feb 2007
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posted
I took Levaquin for 7 days and had to stop from the side effects. Mine were so bad I could not feel my legs. I don't know if what you are describing is a herx from it or not. Hopefully someone can answer that.
Posts: 261 | From NW Pa ~ Crawford County | Registered: Oct 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My understanding is that some exacerbation of muscle pain is to be expected and is a side effect of the medication. That bears out my own experience.
If you were to have severe pain in your heel or wrist or some other specific part of your body then you should call your doctor ASAP and go off until you know if it was caused by levaquin or not.
I was on levaquin for quite awhile. I did have worse muscle pain overall during that time.
After many months I had very severe wrist pain and I was told to go off until the pain resolved then go back on. I was off for a week or so then went back on and had no further problems.
If you have any questions about a symptom related to levaquin, please call your doctor and follow his orders.
I would take extra magnesium to tolerance while on levaquin. I had already been taking about 1200 mg magnesium a day for many years when I started taking it. I upped my magnesium by another 800 mg the whole time I was on levaquin.
You should ask your doctor about the magnesium. Most people will need to balance calcium and possibly other minerals with increased magnesium intake.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I had muscle and tendon problems while on levaquin. I told my doctor and he put down in my medical chart that I was allergic to it. It was NOT an allergic reaction in my opinion. Anyway, have any of you seen the new commercials out by so & so law firm stating that "If you took levaquin and now suffer from tendon problems you may be entitled to monetary compensation" Levaquin has now been associated with tendon and muscle problems in many people. It is not a side effect or herx. I have been off levaquin for years now and I still suffer from repeated bouts of tendon problems. BE CAREFUL TAKING LEVAQUIN!!!
Posts: 16 | From Buffalo, New York | Registered: Jul 2004
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posted
PS.... With regard to my previous message, it has been established that Levaquin causes PERMANANT tendon problems long after the medication has been stopped. Hence, the lawsuits. One of the requirements of a personal injury suit is that your injury is permanant in nature.
Posts: 16 | From Buffalo, New York | Registered: Jul 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I know a lot of people with lyme and bart have taken levaquin with absolutely no problem. My understanding is that it is far and away the most effective treatment for BLO (bartonella like organism).
That said, of course no one wants permanent damage from using a drug. I know there are anecdotal accounts but do you have any links to science that proves that levaquin causes permanent damage?
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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I am afraid my doctor was very vauge... and if I complain about anything, he will just take me off of it,
are there any alternatives for Bart treatment?
really bart is the only thing we have not addressed, and I do feel its helping after 5 days... just scared about some of the pain
Posts: 7 | From upstate NY | Registered: Feb 2007
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posted
Terry, All I know is that the comercials I saw were proclaiming tendon damage from Levaquin. Next time I see one of those commercials, I will call their 800 number and try to find out more.
Posts: 16 | From Buffalo, New York | Registered: Jul 2004
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posted
Rebitten in May, I realized the reason for my already 6+ years of pain, headaches and fatigue that put me out of work with no formal dx to blame other than neck arthritis/stenosis.
I am new to all of this, but will NEVER forget my July2-5 herx this year.
I had to shuffle to the bathroom, too painful to put feet on the wooden floor.
I had to wear running shoes & took to wearing slip-on Skecher energy shoes every step I took. I have kept it up since.
I step into them out of bed, and the bath-the only time I take them off.
I developed intense full-body pain and sweats, and a vicious headache that extended to my upper back. It was so intense I had to move slowly so as not to get nauseated.
I was taking the abx for a UTI, and had poor kidney function tests, so I was afraid to take a single pill for the pain that would haunt me for days.
The headache was so horrific tht I'd lay there writhing for hours and slip into short 30-45 minute sleeps.
THEN I had the nightmares that I was steping on greasy worms and ticks would run everywhere!
THEN I saw Leslie Wermers saying, "I'm angry that no one was there to help me." "I'm angry thta this disease is being ignored."
On the 4th, my hubby helped me put my pillows at the foot of the bed so I could see outside, and laid there with me to watch fireworks. I started crying and asked him, "Do you you think this will be my last 4th of July?"
I was SURE I was dying, but it was only a five day course, so I don't know what wouldda happened if it were longer.
WOULD I have died? Is it important to "take a break" when it gets this bad? What is pulsing? Hope you don't mind my questions.
It was only later in a phone conversation with Judy W. that she reminded me waht a herx was. Does this mean that I was killing off more Lyme than on the others that don't give me herx?
I can tell you this: If MY experience is typical of Lyme and Levaquin, and if it has a rep for causing herx -I can see why.
-------------------- "SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks arcyone. I'd be interested in seeing anything that scientifically substantiated the claims. I wonder by what mechanism permanent damage would occur?
Lightheaded - I'm no expert on bartonella treatment but I believe rifampin is a drug that is often given for bartonella.
Doxycycline seemed to have some effect on mine since it brought out the long red streaks which is how we know for sure that I have it. My tests were negative.
On levaquin, over time, I noticed (and so did my LLMD) that my tissues changed a lot. They lost their mushy/squishy feeling and became more firm and normal. Also, the long red streaks slowly faded. Other symptoms slowly subsided.
I think I read that sixgoofykids had a much more dramatic effect with levaquin. I had a dramatic effect with doxy but I don't know if it was the bart or lyme or? that caused the dramatic changes.
There is a book out by Dr. S. about bartonella. I have his babesia book which I found to be very helpful in explaining treatment options. I don't have the bartonella book because he raised his prices so much after I bought the babesia book. Others may have comments about the bartonella book as to whether it would help you with treatment options.
Buhner has bartonella treatment in his herbal book and there are other herbal products that might be helpful for bartonella. One is a rizol oil. I don't remember which one. You could find out more by doing searches here.
Dr. Z has some HH capsules that I think are for bartonella.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
LymeLearned asked: Does this mean that I was killing off more Lyme than on the others that don't give me herx?
Good question. Levaquin is not typically used to treat lyme as far as I know. It is used for bartonella.
Technically, bartonella would not produce a herx but I think if you have a big die off and your body couldn't get rid of the debri fast enough, you would feel sick.
You may also have been experiencing an exacerbation of a systemic yeast infection. Were you on probiotics? Have you tried anti-yeast treatments to see if you get a response?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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MariaA
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Member # 9128
posted
I actually saw something in the AIDS literature recently that mentioned that when treating immunecompromised patients for bartonella, they'd experience a 'herxheimer-like' reaction. They made it sound common. Of course those people might ALSO have had Lyme, but I think it's more likely that bart is just one more organism that causes this.
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