posted
I'm in a panic/quandry about what might be happening to me.
Treating for babs, bart, and lyme since last August.
I stopped levaquin 2.5 weeks ago after 9 weeks treatment, started minocyline next day.
I took an easy cross country ski late last week when I thought I might be facing surgery on rotator cuff this week, when all hell broke loose.
My shoulders are suddenly extremely painful (feels like two torn rotator cuffs, I already know one is), one is popping, achilles pain radiating down into plantar fascia, patellar attachment pain in one knee, very painful thumb/wrist tendon.
My heart sporatically feels like it wants to pound out of my chest and up into my head. Headaches are a new thing. Anxiety attacks surpass anything I've had to date.
I am a competitve runner and working out and being being outside has been my life, so I am feeling devastated right now. Can't even play with my kids.
I am taking magnesium malate and "ligaplex".
I am as freaked out as I have ever been, very concerned this toxicity, herx, or bart return is taking me down and ending my life.
This said, have others had similar symptoms? If it was levaquin toxicity, did you recover? If so how long did it take?
I thought I had seen the worst.
lm
Posts: 212 | From Eastern CA | Registered: Apr 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Hi LM. Sorry about this nightmare.
I have had many of your symptoms, except from the achilles tendon and shoulder. My shoulders would hurt, but it was more of an ache.
I had tremendous pain with bart and bart treatment. I was so achey I was delirious. Epsom salt baths helped some, but I also needed pain relievers. I had Vicodin left over from a minor surgery (having a cyst cut off), so I took it. It barely touched the pain.
I get the wrist/thumb and knee pain too. I think that's mostly the Lyme.
I also have the pounding heart and have recently gotten headaches. I don't know what they're from.
Mino is a very hard drug. It could be causing a symptom flare.
Also, if you still have bart, your bart could be flaring if you are no longer treating it.
This is a hard call .... I'd talk to my LLMD about it.
Hang in there .... you will get better with persistent treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
What dose of Mino are you on? Hubby can only tolerate 100 mg 3 times per week. Some debate over whether this med works on Bart or not.
Hubby is also taking Levaquin. He stopped but restarted it after a week as his muscle rigors and tremors/myoclonus were coming back.
Did read recently that some docs suggest coming off Levaquin for 2 weeks and then resuming it to get any residual Bart.
Don't know what to suggest regarding the tendon pain.
If it is Bart maybe Rifampin might be a better choice going forward. Pretty sure hubby will have to go that route as Levaquin plus Bactrim plus Mino hasn't gotten rid of the Bart.
If you are very active probably the fluroquinolones would not be the best choice going forward.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
That's a good point, Bea.
I was looking forward to a summer of playing racquetball with my daughter while she's home from college. Now that I'm back on Levaquin, I think twice about doing anything .... I will be sticking to the elliptical for cardio.
Bummer. I like racquetball so much better!
LocalMan, it's your experience that keeps me off the courts .... there is at least one person out there benefitting from your problems. Thanks for sharing on the board.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Mino gives a headache to a lot of people. The first time I took it I had to stop after 9 days because the pain was unbearable.
For the other things I don't really know. The tendon stuff I think is from the Levaquin and it will take a while to go away. I'm on a one week break and I still have the tendon pains.
Did you ask your LLMD about the anxiety?
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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Alv
Unregistered
posted
I do not know about going back to levaquin is permited.
Ok ..you know my story ..started BART treatment
2 month blood irradiation June /July -for bart ( exsp ) stoped but helped.
July -2007 Doxy , rifapmin , Azithr Than increased Rifampin on 3 rd month to 600mg
than stoped in december( ins did not want to pay) I should have continued -as Zithr and rifampin was still beeing paid but my drs -swithced to Ketek--That WAS MY HUGE MISTAKE
Did also 1 month bart formula -homepathic from Biological deseret So january was only on Ketek and pulsed FLAGYL and CUMANDA .RELAPSED FOR 1 MONTH.
Bart came back ..Started LEVAQUIN on February --on the 5th week -pulled a tendon on my left knee and left shoulder-pain everywhere-felt so toxic and could not walk .Stoped Levaquin on 6 th week.Was worst on walking than before levaquin .
Restarted ( my decission did not wanted to loose ground scare for relapsed and she said I will put you back on rifampin anyway so why loose ground -) rifampin -as my dr said wait and use DOXY until you see me in 1 month
Did not wanted to loose ground -and went to 1200mg Rifampin and Doxy , that happened in MARCH to NOW.Used only 2 weeks of 1200mg rifapmin -high dossage and continued and still am on 600mg rifampin.
Also cumanda 30drops.
Now I am not herxing on 30 dropps of Cumanda.
So as of today -I take Omnicef , AZITHROMAX 600mg , Rifampin 600mg and 30 Drops Cumanda.
I do not herx..but bart is there.It is not a high load and I am way better than I was .I AM SO AFRAID as I still have bart.
OK ..I spoke with DR J in CT last week-Sent my son.When I exsplained what I did -He mentioned " If you have an active infection and you change the antibiotics the bugs will mutate and will become resistant to the same antibiotic"
My concern is -I herxed on 1200mg rifampin -but did the bugs became resistant..???
Can I go back on pulsing LEVAQUIN ?He said they are other ways to treat BART !.THE CONVERSATION WAS INTERUPTED and I forgot to ask again
Did anybody did that so far?
I also have been taking on and off Knotweed...
And I am looking for other oportunitis to kill it.
I SHOULD HAVE NEVER STOPED RIFAMPIN ON THE FIRST TREATMENT -even though I had to pay from my pocket.
Relapsing from bart is scary -my neurosymtoms gets worst ...
Ok I recoverd from levaquin and do not feel so toxic ( you need to detox ) and my muscle are better-taking/ adding azithromax made my muscle pain better more manageble .
When I treated with RIFAPMIN AND DOXY only -is not a good combo as bart was hiding in tissues.
AZTHR , DOXY AND RIFAMPIN is the best but need to be taken for at least 9 month even longer ..than if that is not gone try levaquin at least a couple of weeks to kick it out completly -not vice versa...as you get so toxic from LEVAQUIN and really might pull tendons.
My left knee got better but I have problem when I bend it ..walking is not a problem anymore--while on levaquin I was holding myself beside walls as i could not walk.
I had severe encephalitis and neuro -bells palsy from bart and lyme.
I have only taken Doxy for lyme...Treating BART IS MORE IMPORTANT AND that is what makes neurosymtoms worst.
I am looking for other options also...
WHAT IF BART GET RESISTANT TO RIFAMPIN AND LEVAQUIN ?
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Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
You really need to talk to your LLMD
How long did you do levaquin? what sometimes happens is that when you have treated bart you can then suddenly be more receptive to Lyme treatment, therefore what you are experiencing could be an extreme herx
Or
Bart likes to hide out in the bone marrow of connective tissues, so once you stop Levaquin it comes back to bite you so youhave to retreat.
You need to rest and contact your LLMD as soon as you are able and keep in mind that this is transient and be it Toxins/Lyme Herx or Bart reappearing your LLMD will know what to do.
Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Alv wrote:
"Relapsing from bart is scary -my neurosymtoms gets worst ..."
What exactly does that mean? Forgive my ignorance but how do you KNOW the Bart is NOT gone?
Can you list some symptoms when you refer to "neurosymptoms" as examples? Also, list symptoms that make you think Bart is not gone and is causing you to be disabled?
posted
My skull burns , numbnees comes back , twitching in my face also , and my right arm hurts...-i know that is looks as LYME but , my llmd does testing and every month she said , lyme and bart still are there strong.
When I stiooed treating bart and just got meds for lyme....I started beeing emotinal -foot pain increases etc...I know that was bart ...
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posted
So sorry to hear that local man. Best wishes to you.
As a fellow runner also dabbling in levaquin, I'm watching your situation carefully. I'm also being ultra careful (no running) due to your experience. I walk about 1/2 hour a day now. I plan to continue to not run for at least 4-6 weeks post levaqin and then start back easy. God willing of course.
Its such a shame that a potentially great drug has such bad side effects. You would think someone would be able to re-work it so that it could be tolerated better.
Keep us posted of your situation LM. You'll pull out of it soon.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Yeah, I think the problem is that Levaquin isn't supposed to be taken for as long as we take it! :0 When I picked up my Rx the other day, the pharmacist came out and said, why did your doctor prescribe 30 days of this? Most people take it for max two weeks! I didn't go into it with him.......tired of the shocked expressions from others who are not in Lyme-land.
MrP and Dan, you guys may need to take it easy for awhile AFTER the Levaquin treatment is over....I was told the effects are cumulative which means we won't be rid of the side effects immediately upon stopping the drug. But check with your LLMD (Dan, we have the same one, he's back from vacation today!) Posts: 3528 | From US | Registered: Apr 2007
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