That's so sad... but as with any drugs there will always be one or two that will have an extreme reaction!
I'm dripping my Zithromax for the first time right now and I'm petrified!! But if I don't try something I will continue to deteriorate and I'm so sick of living half dead! Posted by Spindleshanks (Member # 32556) on :
Almost sounds like these people may have had a herx rxn? Or I just have it stuck in my mind!
Posted by Lymetoo (Member # 743) on :
Did you watch the video?? Way more than a "herx."
Posted by Spindleshanks (Member # 32556) on :
No I just read the article. I will go back and see if I can on my computer. Thank you
Posted by sixgoofykids (Member # 11141) on :
My LLMD was very clear it was a last resort drug and was to be taken seriously. For me it was the last resort before going on IV, which also has risks. I had severe, very severe, cognitive involvment that was disabling, not even considering how disabled I was physically. That was the cost/benefit analysis of Levaquin.
For Cipro, I had to consider that I had constant watery diarrhea and had to eat at least 4000 calories per day to maintain my weight, which was lower than it should be. I had a serious GI infection.
So, it wasn't taken lightly. I always cringe when people say they are on a Quinoline for strep or a sinus infections. Please .... ugh.
Posted by Lymetoo (Member # 743) on :
I know. Both people on the video were given Levaquin when other abx would have fixed their problem with ease.
One focus of the video was that we really need a type of "clearinghouse" for adverse drug reactions. There is NO such thing now and patients do not get the black box warnings that medical professionals receive.
Posted by scorpiogirl (Member # 31907) on :
I was given Levaquin for a "sinus" infection on that fateful November day when they thought I had the flu. I actually didn't have a sinus infection I had Lyme! Anyway after 3 doses I ended up in the ER so we had to stop. Not sure if I was herxing or what but I got really sick from it. I have tried it again twice more but never once able to tolerate it from more than 3 days!
Posted by Spindleshanks (Member # 32556) on :
Wow six and lyme you are both very knowledgeable. I feel very lucky to have found such a great support group. So both of you went to germany and had treatment from what I read on another post, was that the last thing you have used as treatment?
I was just dx in oct of this year after becoming sicker and sicker after having a baby. I have had symptoms for most of my life looking back. My brother and sister also seem to have similar problems but they are younger and have yet to be diagnosed. My mom is wondering if she could have given it to all of us. My brother is very very sick!
Posted by sixgoofykids (Member # 11141) on :
I went to Germany and continued that treatment to get to remission.
Lymetoo used abx to the end, and did not go to Germany.
I hope you feel better soon, Spindleshanks.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids:
Lymetoo used abx to the end, and did not go to Germany.
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Does BEING GERMAN count?? Wish I could have gone there... have never been there!
Posted by map1131 (Member # 2022) on :
I can't believe what I'm reading and researching here. I've said many times on this site something was triggered in me 15-18 mths ago. My PCP, my husband, my mother and even I noted that something just wasn't right with me.
March/April '10 I was rxed for UTI when I was already on rifampin. I couldn't figure out what that abx, which I'm positive was a fluoroquinclone added to rifampin did if anything but it did cause a full body rash.
I went to Ft Lauderdale for Spring Break '10 and was covered in a rash from head to toe. When I went back for my yearly this year I told them to mark my chart allergic reaction to that abx.
I'm calling pharmacy tomorrow and see which abx was rxed, but I'm pretty sure it was generic cipro.
Also I had done levaquin a few times in '09? Bartonella killer, and then I switched to rifampin in eary 2010 and did 3 mths of it again trying to knock bart down.
I've got alot of back tracking to do.
Pam
Posted by lymeboy (Member # 24769) on :
I guess Octoberfest would be out of the question on a healing expedition to Germany huh...
Posted by lilacs48 (Member # 20025) on :
I have taken both Cipro & Levaquin but knew some of the risks but when you're desperate to live you'll do almost anything. These are new risks ...I might have thought about it even more if I'd seen this before. ty Lymetoo for posting.
Posted by map1131 (Member # 2022) on :
I knew the risks too. But I didn't realize taking rifampin and fluoroquinoles together was real risky.
I didn't realize the abx I was taking was like taking rifampin and levaquin together. I wouldn't have done it. I did not spend the time to look at info on UTI abx.
I did search but I only went so far to see if it was common tx for UTI and it was and I did it with rifampin. GYN and pharamcy both had records of rifampin usage.
IMO rifampin and fluoroquinolone were big mistakes....I should have never gone back on abx. Period.
Bartonella is no little bacterial infection. I needed something for my serious GI issues and it helped but only short term.
TBTG I now know to just go after it my way and not the traditional medicine way. It's poison to me. Gotta love our FDA and Big Pharma? What a team?
Pam
Posted by Lymetoo (Member # 743) on :
Pam... where did it say that taking quinolones with rifampin was a dangerous mix??
Everyone here needs to SEE the video. Maybe those symptoms of "MS" are really damage from quinolones...??
I read elsewhere that they are linked to Sjogren's also.
Posted by map1131 (Member # 2022) on :
I read something and then I came back here to post. Lost original site that stated it.
Went back for an hour last night and I did find some info that there is a reactions between the two abx. I was thinking and saved that site.
With fresh(er ?) mind let me go find what I originally seen that got me going.
I'm off to go by pharmacy and pick up my rx list from '09 & '10 before I forget. Imagine that?
Pam
Posted by Lymetoo (Member # 743) on :
OH, OK... I thought I missed something in the link above.
Posted by penguingirl (Member # 28688) on :
Wow, tutu, thanks for sharing!
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by lymeboy: I guess Octoberfest would be out of the question on a healing expedition to Germany huh...
When I went there were a bunch of people leaving who had been at Oktoberfest.
Posted by map1131 (Member # 2022) on :
No I've found two sites of interest. Google rifampin & fluoroquinolone toxicity and you 13,000 hits.
One from FDA warns of acceleration when taking rifampin with fluoroquinolones. Mighty strange reactions going on.
So explains my full body rash in April '10 and some added goodies to me mentally, emotionally and physically.
I'm having a hard time copying to lymenet. Bare with me.
So sad these folks being effected and no clue that TBI are most likely involved.
I knew rifampin was known for treating pn. I had very highly positive numbers for myco pn. I knew that's why I was having such a hard time with it.
Funny it helped my GI issues, opposite of what some studies find. It put some bad boy in his place(whereever that is), but it feels like kidney is the hang out these days.
Pam
Posted by Mathias (Member # 5298) on :
Floroquinlones saved my live. I did rounds of Levaquin, Cipro and Factive. Minimal side effects for me and I took them for long periods of time. Everyone is different. With all medications benefit vs. risk should always be considered.
Posted by map1131 (Member # 2022) on :
Mathias that's great they saved you life. I glad some are getting better....
but one man's medicine can be another man's poison.
I have the personal experience to talk about how abx can be poisonous to some. I'm not a lone ranger either.
One doesn't always know how one's body is going to react to all this meds that are being thrown at some. It scares the you know what out of me when I see some of the toxins people are putting in their bodies.....
just trying to kill this huge evil monster we call lyme & co?????????????
Then there's the people that think all you need to do is throw some mighty powerful abx at this mighty bacteria(s) and everything will be all better.
It's a huge process. It involves much more than some toxic BIG PHARMA ABX. Nobody can tell you which pieces of the puzzle you need to work with your abx protocol.
One must go out and find the other pieces by oneself. That is also a nightmare. Detox is key. So is support for all your major organs. Skin, liver, gall bladder, spleen, heart, hormone glands, GI, heart, brain.
Pam
Posted by nefferdun (Member # 20157) on :
I saw the warning about the quinolones on TV. They are extremely dangerous. When I took Levaquin I was told my risks were minimal, nothing to worry about. It gave me tendonitis which took 8 months to recover from.
But it did wonders for knocking down the bart. If I was back in that place and Rifampin or Bactrim DS failed me, I believe I would use it again but really up my magnesium and vitamin C before and during. I would also take a really good joint supplement - a very costly one that does wonders for healing tendons - in hopes of preventing damage. Even then, it is scary as it can also affect you mentally.
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Wish I could have gone there... have never been there!