I started IV vancomycin on Tuesday and i wanted to know peoples opinions on this drug. I know its the "drug of last resort" but has also been very effective in treatment of neuro-lyme. I have had Lyme for 14 years (it layed dormant for 8 years).
So far I have only noticed myself feeling a LOT better after taking it with no major herx. I never herxed off IV rocephin either I just gradually felt better.
Ever other medication I have taken has made me herx severely after the first or second dose. Has anybody had exoeriences with this drug? I am on 1 gram twice a day right now and will be increasing it on thursday when I go see my LLMD again.
I am also going to NY next week to see another LLMD thats better then mine to get a second opinion. I have been in treatment for 8+ months and seen no improvement.
Thanks, Lindsay
Posted by minoucat (Member # 5175) on :
The hubby has been on it for 3 months, with IV rocephin. He was on IV rocephin/doxy before, and has been through a great deal of tx for years.
At first Vanco was great, but he's now plateaued again. We think he may be facing a bartonella relapse.
Aaargh.
Posted by CaliforniaLyme (Member # 7136) on :
I am glad you are feeeling better on it- I have only known one person on it for neuro Lyme-
Posted by timaca (Member # 6911) on :
The only time I was given IV vanco was during knee surgery. I was falling apart at the time with bizarre symptoms, but the orthopedic doctor still wanted to do the surgery.
12 days after the surgery (and IV vanco) I was in the worst pain of my life...severe full body nerve pain, off balance, dizzy....thought I was gonna die.
I ended up in his office and my PCP's office in tears asking for help.
That started my very long quest...until I finally got a diagnosis of lyme disease at Columbia Univ. Medical Center.
Since then, I noticed a severe herx on day 10,11 or 12 after starting antibiotics. None of the herxes were as bad as with IV vanco.
I am now on Valcyte, an anti-viral drug. If you have plateaued on antibiotics consider getting tested for viruses. There is a thread here on lymenet on Viral Testing that I posted. The search engine should find it for you.
I am making improvements on the valcyte.
Best, Timaca
Posted by LuLuFlorida (Member # 12066) on :
Thanks for all ofthe responses. Up for any more!
Lindsay
Posted by Mathias (Member # 5298) on :
Excellent drug for treating lyme. But like all medications, they don't work for everyone. My LLMD thinks try an antibiotic for 3 months, if no help whatsoever (i.e. not a single symptom improves or resolves) move on to another.
Posted by LuLuFlorida (Member # 12066) on :
I really think that more LLMD's should consider using IV vancomycin. I researched this drug before I was put onto it and checked the opinions of other LLMD's after starting it. I feel that most doctors dont use it because they are afraid of lawsuits :-). While most doctors dont use this drug because of the potential side effects, like turning red and kidney failure, there can also be many benefits. All drugs you take can have side effects, and the side effects of vancomycin have been less for me then any other drug I have taken. There is also less side effects if it is infused over a long time period of time and your blood levels are closely monitored. While there is a chance of building up resistance, this is true for every antibiotic, and if I was exposed to MRSA right now I wouldnt ever get the disease according to my LLMD :-).
Posted by JRachel11 (Member # 12891) on :
quote:Originally posted by LuLuFlorida: I really think that more LLMD's should consider using IV vancomycin. I researched this drug before I was put onto it and checked the opinions of other LLMD's after starting it. I feel that most doctors dont use it because they are afraid of lawsuits :-). While most doctors dont use this drug because of the potential side effects, like turning red and kidney failure, there can also be many benefits. All drugs you take can have side effects, and the side effects of vancomycin have been less for me then any other drug I have taken. There is also less side effects if it is infused over a long time period of time and your blood levels are closely monitored. While there is a chance of building up resistance, this is true for every antibiotic, and if I was exposed to MRSA right now I wouldnt ever get the disease according to my LLMD :-).
I agree, I'm on IV Vanco. and it's the only drug that has even done anything, just it takes a looonnnggg time.