I have pain in my calf and heels all the time already (large leg tendons?)-
got an apt with an LLMD in October
got strong Bart symptoms and thought my regular doc may treat me for the Bart already
BUT - Dr. Burrascano says:
"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."
Would you trust a regular doc to give you Levofloxacin and know what to do if your tendons start to tear ?
How much Vit C or Mg should be given?
And would the regular doc even consider doing it parenteral?
I am scared to ask for it with someone who has no experience.
on the other hand my 10 year paid health insurance could maybe do something for me and that right now!
Would you try to get them to treat you for teh Bart before you see the LLMD or wait?
I am getting sweats and fevers and strong CNS symptoms every 10 days now and sore feet all the time...
Woudl be nice to treat this now rather than in 2 months...
or would you wait for someone more knowledgable?
Thank you all so much!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I wouldn't but then again, I have a lot of disdain towards Levaquin and it is not just b/c of the experience with lyme patients.
I've seen too many people have problems with it.
If you're already having tendon pain, then how will you know if the levaquin is making things worse?
It should also be noted that roughly 61% of reported tendon ruptures associated with that class of abx have been caused by Levaquin. That's a fairly large percentage if you ask me.
Despite making up just 45 percent of fluoroquinolone prescriptions dispensed between November 1997 and December 2005, Levaquin was responsible for 61 percent of tendon ruptures associated with those drugs over that span.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Is there anything a regular doc could prescribe already for the Bart before I get to the LLMD?
I ahve the appointment at 2:30 today
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
exactly, heel pain and calf pain are just that, its not tendon pain. i would treat if those are your symptoms.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Actually, heel pain and calf pain can be related to the tendon.
Achilles tendonitis may cause pain in the back of the heel. The tendon attaches your calf muscle to your heel bone. When you have problems with it, it can also cause pain in your calf.
anyway, you don't need to listen to my advice about the Levaquin. As I said, I have disdain for it based on too many problems **I** have seen and what I gave is just my opinion.
For the record, when I had problems with my achilles tendon, I had horrible calf pain.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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I hear you - I am not sure about the pain, but it could well be the tendon, I think so, too
did anyone have any success with other drugs for Bart that I could try - that worked for you for Bart???
Did anyone have the C and Mg injections? How much dose and how often to clear tendon?
Sorry I have so many questions
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
Levaquin is not the only drug that can be used for bartonella. Rifampin is another good one, although very difficult for many to take.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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posted
I cannot tell you what to do, because if you have Bart it needs to be treated, and Levaquin is said to do that.
However, I took Cipro awhile back. After just the second day I had to be rushed to the hospital when my blood sugar levels became extremely high. This was one of the many adverse reactions that are associated with this antibiotic. I was lucky I survived.
Three weeks later, while watching tv in bed, a tendon in my left knee ruptured. As a lymenet friend said to me on the phone, "just when I thought things couldn't get worse".
There is no other explanation for my tendon rupture other than the Cipro, which I took for only 2 days.
As I said, I cannot tell you what to do, but my experience with the fluoroquinolones was nightmarish. I will never take any one of them again.
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
Levaquin is not the only abx for bart. I had foot and heel pain for years. Levaquin did not help at all.
I finally tried tindamax (500 mg) and cipro (250mg) twice daily with meals (along with Mag-tabs and calcium), and my feet felt better after just a week. I did not have any tendon problems or side-effects from this combo. I did 3 months of this combo and then stopped to see what would happen. My feet started hurting again.
I did another 3 months and then stopped abxs again. My feet felt fine for a year until I had a bad URI and took a z-pak. About a week later, my feet started hurting again, so I am now back on tindamax and cipro and am feeling better.
Everybody reacts differently to levaquin and cipro type abxs. Just be sure to keep a watch out for any tendon pain and take extra magnesium and calcium.
posted
Although levaquin may be the preferred choice for treating bart, there are other options. My Doc likes to try Bactrim first, as there are no tendon issues with it.
And of course I reacted horribly to Bactrim, yet haven't had major issues with Levaquin so far. Everyone is different there.
Are you being treated for Lyme or any other tick related things now?
Maybe just have your family doc start you on Doxy, treat Lyme + ehrlichia & whatever else Doxy kills, and wait until Oct. for your LLMD to decide how to deal with the Bartonella? Not all ILADS docs treat Bartonella first either, some like to treat Lyme first and weaken Bart using Doxy, Zith, etc.
Posts: 584 | From NY | Registered: Feb 2009
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Did it eliminate the Bart (before you had to stop)?
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I had problems w/ Levaquin - first time I tried for 3 days and the pain near my heel and calf were excruciating! It was painful enough to make me hold my leg and cry! We stopped and it took 7 days for the pain to subside.
Six months later we tried it again, this time for 5 days and the SAME thing happened! My leg was so stiff and painful I couldn't bend/flex it, so again we stopped the med. This time it took 2 weeks for the pain to subside... so that for me was enough, not worth risking my tendon to rupture! Besides Rifampin was much easier for me to handle.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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posted
I have been on levaquin now for almost three months. It has been the most helpful treatment for my bart. Even though my doc does not like a patient to stay on it... it has been worth it for me. I think you have to make a judgement call and the foot pain I had was awful and I really did not feel I had anything to lose.
Posts: 859 | From Southeast | Registered: Mar 2011
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
I never take drugs with serious side effects - have already enough problems and do not need more. There are so many meds and herbs available why take a risk.
Posts: 1834 | From US | Registered: Oct 2008
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quote:Originally posted by Harmony: thank you all again!
Lemon-Lyme, what happened when you took Bactrim?
Did you have to stop?
Did it eliminate the Bart (before you had to stop)?
I got a fever (101+), dizziness, shortness of breath, piercing headaches, and generally felt lousy. I eventually fainted once and then broke out in a really weird (and somewhat spotted) rash over my entire body.
So... not sure how much of that was a side effect, how much it was killing something, but it wasn't the drug for me. I lasted about 6 days on it. And it took me at least 3-4 weeks off of it to begin to feel somewhat normal again.
Interestingly, my doc retested me for bartonella afterwards and this time it came back positive for both strains, while initially it was negative. I had also been taking Doxy for several months previous to Bactrim, so can't say Bactrim 'riled' up Bart for certain -- but something seemed to.
I wouldn't let my reaction scare you away from it though, if your doc wants you to try it. Just be on the lookout for side effects, and stop if anything really weird occurs.
Posts: 584 | From NY | Registered: Feb 2009
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Yes it is a judgement call - I think, personally I will stay away from the tendon-rupture-risk meds
since it may be my tendon that hurts already and it would be hard for me to tell when to stop the meds if I am supposed to watch for tendon pain, as you were thinking, philly78, I think that, too
thanks for sharing your experience, no_lyme_in_florida, I hope you are much better now! and the tendon could heal as best as can be expected!
really sorry to hear you had such bad reactions, Lemon-Lyme and hoping your Bart is better now and/or you found another med that works for you
I am inclined to go with my doc's view that a reaction is good news in disguise (Herx) and without one you almost doubt the treatment is effective
hard to distinguish Herx from side-effects, I know
Plus I have not even started yet, still waiting for my first appointment but had symptoms for over 12 years and bad ones, too
(read a lot about my doc's views on the clinc's page)
especially recently with a new EM rash and 21 days on mild doxy - already had a mild Herx and then terrible sweats, sole and palm pain and tingeling, CNS symptoms
so I can imagine what will come...
Thank you all for your support and knowledge
I would not know what to do without you!!!
You are helping me to hang in there and be more informed and not to feel alone!!!
That is increadibly important to me right now!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
Lemon-Lyme, maybe the Bactrim killed enough of the Bart bacteria for your immune system to recover a little and show the antibodies
that is interesting
did your doc say something helpful about that?
doesn't that happen with Borrelia, that you show negative until you start effective treatment for a while?
if that is the case, the Bactrim may have really helped and your reaction may have been a strong Herx
also, though, coming off the (mild) doxy caused my Bart to flare within a day, it seems
(I got 100mg bid for 21 days from a non-LLMD after the EM rash)
did you come off the doxy right when you started the Bactrim or was there a time lag and when did your bad reaction start? - just curious
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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posted
It is of course possible Bactrim caused by body to produce antibodies against Bartonella, hence the positive results. I expect this is probably what happened. Just mentioned Doxy too, as there is no way to know which drug (or both) caused Bart to go positive.
As for Bactrim helping, don't think so in my case. If I could have stayed on it, perhaps, but my reaction felt beyond a herx (and I've had them before). I really felt like I was dying, and even if I managed to stay on it longer to kill more bart, I think it would have killed me in the process.
And my doc said the rash was an indicator of a bad reaction. Bactrim is one of those drugs that most can tolerate fine, but some people get really bad reactions from it.
If I recall right, I switched right from Doxy over to Bactrim. But this was like 1.5 years ago... so don't remember exactly.
Posts: 584 | From NY | Registered: Feb 2009
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-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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every 10 days now and sore feet all the time...
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