I went on Factive combined with Tindamax for 5 days 1 pill/day (along with lots of magnesium) and at the end I had really bad tightness in my ankles that got very painful. Still able to walk but very worrisome. I stopped Factive and things improved over 3 days then I went to see my LLMD.
My Doc told me to go on Tindamax and Zithromax until the pain was gone then switch to a low dose of Cipro and ramp that up slowly.
Its been 2 weeks and things are not going well. The Zith made everything worse. Ankles got tighter and more painful so I stopped all abx.
Its been ten days off abx and my ankles have improved somewhat but things got worse before they got better. The tightness moved to my wrists and lower arms and my eyes have gotten really dry. Weird stuff. Still not 100% gone.
I'm seeing my LLMD again on Tuesday. I've got a few questions I'm hoping people can answer to inform my next appointment.
First, have you had post-fluoroquinolone issues like this and what did you do about it? How did you recover?
Second, did other non-fluorquinolone drugs (like Zith) exacerbate things? Any specific drugs? How did you deal with this? Just go off abx until things got better?
Finally, did you every go back on fluoroqinolones after the bad experience, either the same or different drug? How did that go?
Thanks everyone for sharing!
Posted by thejoje (Member # 19976) on :
Good questions. My husband just blew a tendon in his shoulder after being on Cipro for a little over a month. He is still on Zith, tho.
If I were you, I would stay clear away from the Cipro as it is the cause of tendon problems.
Would love to hear from others too.
Posted by kadee (Member # 21199) on :
I was floxed from 4 weeks Levofloxacin. After 2 days taking it I had stopped, because of tendonpains. They went away after a few days and I continued Levo.
After 1 month I felt suddenly very bad and stopped. One week later things turned very bad and continued to get worse over 2-3 weeks. Could hardly walk anymore. EVERY tendon and muscle felt inflamed.
Was nauseous, blinded by light, could hardly digest any food and was in a very bad psychic condition. Additionally I wasn't able to take any chemicals like ABX anymore and was totally allergic to most chemical smells (started trembling, being shaky and sleepless)
All this despite of many my Bart symptoms had improved.
Meanwhile, after 3 months, things are better, but still can't tolerate any ABX.
So my advice to you: I would stop Chinolones alltogether.
Posted by Lymeorsomething (Member # 16359) on :
I loved Levaquin but you have to max out the magnesium intake to protect the tendons as much as possible.
It's not unreasonable to try again but I would give your tendons several months to recover.
It took a good 5 months for my tendon issues (only in one leg) to resolve.
Posted by seibertneurolyme (Member # 6416) on :
In my opinion if the Zith made things worse then the problem is more related to bart itself than to the Factive.
I know there is a pubmed journal article somewhere that talks about ruptured tendons prior to any lyme treatment. I personally think that both bart and lyme can hide in the tendons and that it is not always the meds that are the problem.
Hubby is having many more neuro problems since increasing his zithromax to 600 mg every day. He previously took either 300 or 600 mg 3 times per week for about a year. He stopped the factive/tindamax combo because of some mild all over body aches and the tindamax seemed to cause neuro issues as well. He had some mild tendon issues with factive also.
Hubby is now on mino, zith and rifampin. The recent increase in zithromax and rifampin initially seemed like it would help with the bart, but his neuro symptoms have been getting worse again and his red blood count is dropping again so it doesn't look like this is the magic combo either.
His tendon issues and overall body aches have gradually improved over the 6 months he has been on rifampin, but are not completely resolved.
Anyway, rifampin is another med you could consider adding to the mix.
Bea Seibert
Posted by Starch (Member # 16205) on :
Before Factive I was on rifampin and Zith. I herxed at first then only modest improvement hence we gave Factive a try.
What have people taken (besides magnesium) to help with tendon recovery?
Posted by randibear (Member # 11290) on :
i was on levaquin for only a couple of weeks.
my ankles got so bad i could hardly walk. we went on vacation and i couldn't get up the stairs.
i stopped it and told my llmd. unfortunately he didn't believe me but at least he gave me other meds.
took a couple of months for it to heal completely. i am still convinced it was the levaquin.
Posted by BoxerMom (Member # 25251) on :
I ruptured my Achilles tendon on day 5 of Factive. I had previously take Cipro with no problems.
That was 5 months ago. I'm icing, stretching, massaging and taking Mg for my tendon. I would say it's 60% improved.
My doc says no more fluoroquinolones for me.
I alternate Rifampin and Bactrim DS for my Bartonella, along with Mino or Doxy for Lyme, and a cyst-buster. Still herxing and improving overall.
Posted by kadee (Member # 21199) on :
I heard, that magnesium, applicated transdermally, is more effective than taken orally. To do this, I got Magnesium chloride, dissolved it in water and applied it with a spray bottle to the afflicted tendons. My impression is, it worked.
Maybe you want to look at the two threads, I opened with the same subject:
[ 04-19-2010, 03:08 AM: Message edited by: kadee ]
Posted by Starch (Member # 16205) on :
So it seems that there's divided opinions as to whether or not to try fluoroquinolones again or not based on peoples' experiences. But not matter what it sounds like I should at least wait until my current tendon issues are gone before considering a jump back in the pool. What else have others experienced?
Also, how much magnesium is enough? I'm currently taking 1,200mg per day orally spread throughout the day, 50% citrate and 50% aspartate. Anything else help in addition to mag?
Thanks Kadee for the reference to other threads.
Posted by Starch (Member # 16205) on :
hey all.
Saw my LLMD today. He's put me on low doses of amoxycillin and some welchol for the next month until tendon issues and stuff die down (hopefully won't take more than a month).
He says I probably won't go back on fluoroquinolones for a long time if at all.
In the meantime, if anyone has additional ideas on what I can take to speed up recovery I'm all ears.
Thanks!
Posted by nefferdun (Member # 20157) on :
I got tendonitis after five weeks of Levaquin and was so floxed from it that I could not tolerate any abx for 8 months. The levaquin was great on the bart but with only herbal support I relapsed and was right back where I started. Now I take Bactrim DS and Biaxin with no problems at all.
I have not doubt it was levaquin and nothing related to bartonella as one person suggested. There are many people using levaquin for other reasons that get tendon rupture.
My shoulder was aching so much I had to try to sleep sitting up in bed. Finally after 6 months I tried a horse supplement and it really helped. It had a lot of amino acids and B vitamins (especially B12), vitamin D and hyaluronic acid (collagen). Someone posted that using whey helped their pain and it is amino acids. I found that the amino acids Lysine and Methionine helped my pain the most - 500-1000 mg each. You also need a lot of magnesium. In addition I take 1200 mg Acetyl L Carnitine and 600 mg alpha lipoic acid ( which helps detox).
Posted by Starch (Member # 16205) on :