I'm really nervous about staying on Cipro after all I have read, but that's what my doc is giving me and that's what is WORKING for me, especially on my absolutely-horrible cardiac symptoms. I don't really want to stop taking it but I also don't want to suffer long-term tendon or neurological damage or any of the other horrible side effects people are reporting from quinolones.
How can I avoid the dangers (i.e. tendon damage) of Cipro if I do decide to stay on it?
Posted by sixgoofykids (Member # 11141) on :
My LLMD said that at the first sign of a tendon problem, I should call his office immediately and stop the drug.
I *think* taking magnesium is supposed to help prevent problems, but you'll want to check me on that.
Posted by CaliforniaLyme (Member # 7136) on :
I was on a cipro for a year with no problems. I loved cipro. I was doing 8 flights of stairs 3 times in a row- running- while on cipro. Never had a problem.
Out of maybe 25 people I can think of locally who did cipro, we had a few people back off because of tendon tenderness- and we had one person who snapped a tendon and had a cast and hobbled around for months while it healed!! OUCH!!!
But I never had a problem- it worked wonderfully for me- I was actually on a combo I have never heard anyone else use- Cipro & Zithro- which was wonderful*!)*!!! Best wishes, Sarah
Posted by tdtid (Member # 10276) on :
LymeCFIDSMCS,
I can definitely relate to what you are saying. When I would be given a new med by my LLMD, I would come rushing here and plug in the name and read everything.
I figured it was better to know worst case scenarios and what to be looking for and yes, the Cipro stories scared me to pieces.
That said, I was so darn sick, I figured I had to have trust my my LLMD and I swallowed my first cipro with my heart beating a mile a minute. I was suffering some horrid anxiety in my beginning days of diagnosis, which I know made my fears much worse.
I was on cipro for three weeks and when I thought I could be having some new pains that could be from the tendons, I called my LLMD and he had me stop the drug and few days but then I was put back on and had no problems after that.
Three months must not have been enough for me personally though, since during my babesia treatment, I started having the bart symptoms come back. So now my LLMD has me on Cipro WITH my Zith and Mepron.
It's kicking my butt, but I keep telling myself we have to get worse to get better. But with this said, I think what it boils down to, is that no two people are going to respond the same way.
Yes, it's good to be aware of the side effects and stay informed, but if you trust your doctor, I know many that have said this drug was a Godsend. You won't know until you try it.
You have the advantage of knowledge by reading up on it and that should help you know if the med isn't quite agreeing with you for any way. Good luck and I wish you the very best no matter what you decide.
Cathy
Posted by Julie4848 (Member # 13065) on :
Regarding any drug. One person can take it and be AOK and someone else can take it (like me) and not be aok. I took one Cipro and was in the hospital for 10 days due to the reaction. My mom takes it all the time with no problems.
Julie
Posted by mushroomman06 (Member # 13088) on :
Cipro has been part of my treatment for the last 8 months. I have had my concerns about the issues that can come about. I trust my LLMD and effects of Lyme are improving.
I started out taking 2 pills aday at 500mg for three months. Developed pain in both archilles tendons, these tendons had completly tore in half in 1986 right leg, 1993 left leg.
Extreme pain keep getting worse, so a call to my LLMD and the Cipro was stopped.
At my monthly vist in Sept. he said we need to give Cipro another go, only 250mg once aday. He said he could not handle 500mg either and had cut down to 250mg himself. He said Cipro is the strongest obx to get into your muscles and tissue to attack Lyme.
I have been taking the lower dose for two months and no reactions as of yet. After reading about Cipro, its effects and warnings it is hard to swallow that pill, but I have great trust in my LLMD but will back off as soon as my body tells me so.
Posted by LymeCFIDSMCS (Member # 13573) on :
My tendons actually have started to hurt so I'm taking a Cipro break right now, but I'm really glad to get these responses as they are very helpful in assuaging my fears.
It seems that most people who do well on Cipro have bart. What is the best test for bart as I still haven't been tested for it?
Also, how long does it usually take for the sore tendons to get back to normal?
Thank you so much for all the info!!
Posted by JimBoB (Member # 8454) on :
Cipro is THE worst, IMHO.
AND I speak from EXPERIENCE from using it, more than once.
I lost my COLON FROM IT! Back in 1994. And I know of two others LOCALLY that have also lost their colons from it.
THIS was PRE lyme for me.
But my doctor prescribed it again for me back in 2000, even though he hesitated. He said, well, you don't have a colon anymore, so lets try it. And I did for 24 days. And it worked. My Lyme symptoms were gone for about 8 or 9 months but then I relapsed, slowly, until in 2005 it was many times worse than 2000, and thought I would die VERY soon, and not even see 2006.
IF it were not for Buhner's herbal protocol, I truly believe I would have.
So, Sarah, here we have a case of where you are FOR a drug, without giving ALL the proven facts about it, encouraging others to use it, not having any idea IF it will help them or not, or IF the side effects will or won't be worse than the cure. WHICH it won't cure Late Lyme anyway, for most people.
Careful what you say, it could come back to bite you.
Jim Posted by JimBoB (Member # 8454) on :
Cathy wrote:
It's kicking my butt, but I keep telling myself we have to get worse to get better. But with this said, I think what it boils down to, is that no two people are going to respond the same way.
Yes, it's good to be aware of the side effects and stay informed, but if you trust your doctor, I know many that have said this drug was a Godsend. You won't know until you try it. ##
NO Cathy, you do NOT have to "get worse to get better".
I sure did NOT. I just got better. I did have some setbacks, and abx made me feel worse, but they did not make me feel better either, with the exception of the Cipro I took in 2000 for 24 days. But as I have reported many times on LymeNet, I relapsed from it. And got worse and worse and worse, till by 2005 I felt close to death.
The Tetracycline and doxycycline made me feel much worse, and it took weeks of herbs to make me feel better again.
MY experiences exactly.
And NO, this drug is NOT a Godsend. He would NEVER do such a horrible thing to his children. NEVER! AND yes, you can try it IF you don't mind chancing losing your colon, or suffering for maybe the rest of your life with bad tendons. My right heel and achilles tendon have been hurting for a long, long time, and still do every day. Maybe it won't bother you, and MAYBE it will.
Jim Posted by tdtid (Member # 10276) on :
JimBob,
I am not a doctor and don't even pretend to be. I can pass on my personal experiences, just as you do and I think that is what makes this board extremely valuable.
When I was first given Cipro by my LLMD, I do recall your posts being some that definitely stood out and made me fearful to even try the drug.
The hard thing about this is that I can't turn back time and see how it would have been had I refused Cipro and gone a different path, such as one you would recommend, since life doesn't work that way.
I do know that by the time I got diagnosed, they thought it was a stroke, since I couldn't walk, slurred my words and was bedridden for a very long time. The combination of antibiotics, Zhang and Buhner herbs have gotten me to a point that I'm getting around on my own.
Does that mean that Cipro is safe? Heck, I doubt ANY drug is "safe" when you get down to it, but what this board is doing for us, is giving us the chance to read ALL sides and the different experiences others have gone through with this horrid horrid disease, that I doubt God would have delibertately put us through either.
JimBob, I do respect your opinion and do think that what you went through with your colon would be horror and a true nightmare. I'm not making light of it. But that also doesn't mean it will happen to everyone that is on Cipro, as many of us talk of our experiences as well.
I have had reactions to drugs and in the hospital more times than I can count with reactions and yet someone else can take them and feel they are their "miracle cure". So I still say the bottom line is that "no two people will respond the same way".
That goes for side effects. I may be put on something that I'm told will make me tired and it ends up doing the opposite and I get horrid insomnia. Different side effects happen. Does that mean I should give up? I can't do that.
My LLMD is an ND which is why I'm also extremely heavy on the herbs as well, but he also feels in my case that I do need antibiotics and feels strongly that Cipro is one of the best in beating bartonella.
We all have to stay informed and try to make heads or tails out of the information we can accumulate. I think it would be unfair to have only the "Rah Rah camp" allowed to talk here, but also wrong to have only the horror stories.
We each are fighting so hard to find our own ways out of these holes and it doesn't seem that ANYONE has a solution that will work for EVERY person here, so we need the wide range of PERSONAL EXPERIENCES so we can weed through it and find with our LLMD's help, what course of action may be best for our personal situation.
This post is in no way meant to be argumenative or say whether ANYONE should or shouldn't take Cipro. For Bob it was a nightmare, for me, it helped give back my life. Either could happen to anyone here.
Cathy
Posted by JimBoB (Member # 8454) on :
No offense taken Cathy.
BUT if I and the two women here, locally, who took the Cipro had to do it over again, I am sure ALL of us would have taken a different route. I was the FIRST my duck gave the Cipro to that had the bad side effects with it. But he didn't worry too much about one person. Then the two women also lost their colons, and THEN HE started getting scared.
We should have sued him. Maybe THEY did, I do not know. But I do know it is too late now, as adults only have 2.5 years to do it after the fact.
He was a pharmacist before becoming an MD, so he leans heavily towards drugs. I do know people who think he is wonderful, as he has a good bedside manner, but "I" think he is a quack. As are MOST MD's, IMO.
I am sure at least some people are helped with the drug. BUT who is to know, which people will be the ones to get their colons totally destroyed from Cipro? I sure didn't know. I trusted HIM and the drug companies. I sure don't anymore.
I am just trying to save some of you from making the same mistake I did. But it is certainly your choice on what chances you want to take.
I find herbs are so much safer, and will heal without the devastating side effects of the big pharma drugs. It just takes a little longer for the herbs to work on the whole picture.
THAT is just MY opinion, from MY experience. I value MY life and health. IF I have a choice, I would rather make it in the direction of saving my organs and still get the Lyme down to livable affects.
I am about there on that front. FROM the herbs and vitamins.
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