My LLMD is considering adding IV Vanco to my current treatment protocol. I've done a couple searches here and haven't found much.
Has anyone used this med? Was it helpful? How long did it take to see results? Were you able to maintain the progress made when you stopped the med?
I would appreciate anything you might have to share about this.
Posted by blinkie (Member # 14470) on :
I did IV vanco for three months. It was a great drug. The one downside for me, was I had to get trough levels drawn every few days and I had to infuse three times daily.
This med needs to be spaced apart evenly so I was up very early and up very late to get my infusions in.
That being said, I wiped out my lyme for many months with just the three months I took it. It has been a few months (3-4) without sympotoms but my memory loss is starting to creep back.
So, I'm most likely getting back on IV vanco shortly.
Overall, great drug, easy to tolerate, tough infusion schedule for me. It might be diffferent for you. Everyone absorbs meds differently so you may only need to infuse it 2x a day.
Posted by sammy (Member # 13952) on :
Thank you for sharing blinkie. Did you take any other meds with the IV Vanco? What do you think helped the most with your cognitive symptoms, this is a big problem for me.
Anyone else treated with IV Vanco?
Posted by Razzle (Member # 30398) on :
Well, I had one IV Vanco treatment...and about 40 minutes into the infusion, I started getting severe itching on my neck and head. Then the pain started...severe, burning, stabbing pain in my bladder, and then it started shooting down my legs to my toes. It hurt so bad I was writhing and moaning, and I have a high pain tolerance!
My doctor said it was probably some kind of allergic-type reaction and he told me to take Benadryl and stop the infusion. I did, and the Benadryl helped pretty quickly to stop the pain and itching.
I'm not convinced that this wasn't a herx, but then again...the Benadryl probably wouldn't have worked so well on a herx...I don't know. But I have listed Vanco on my med allergy list just in case...
Posted by seibertneurolyme (Member # 6416) on :
Hubby has had 3 days 2 different times in the hospital. They did draw peak and trough in one hospital. He got 1 gram 2 times per day both times.
Was on 4 different IV meds due to "unexplained" high fevers -- still pretty sure they were babesia herxes.
Anyway -- he likes this med. Says it gets into the back of his brain that other meds can't get to and just makes him feel better.
Bea Seibert
Posted by sammy (Member # 13952) on :
Thank you Razzle and Bea. I'm so ready to feel better.
Posted by LuLuFlorida (Member # 12066) on :
I have been on IV Vancomycin twice, and AK going to start my third round in a week. I was on Rocephin the second time and this time will be on Factiv and bicillin la. I loved Vancomycin. It made me improve a lot but I got extremely toxic. Obviously its stronger than mist other meds so if your doctor is considering it you must be very sick. It's called the "drug of last resort" because its normally reserved for antibiotic resistant infections.
You need to take benadryl and pepcid ax beforehand to prevent red man syndrome or an allergic reaction. I only had the peak and trough done after the first 3 days and normally shouldn't be done any more than that unless a dose adjustment is needed. Will let you know how it goes this round.
Posted by sammy (Member # 13952) on :
LuLu, thanks for the heads up on benadryl and pepcid ac. What doses did you take of each? And do you know why they recommend the pepcid ac?
Posted by LuLuFlorida (Member # 12066) on :
An allergic reaction occurs from a histimine response and the way to stop the response is by inhibiting the receptors located in the stomach. Antihistimines work by binding to H1 (histimine1) receptors instead of histimine, which is why benadryl or other antihistimines help.
Pepcid AC, and other H2 blockers, reduces stomach acid by blocking H2 (histimine2) receptors. Not all medications that reduce stomach acid are H2 blockers, some are proton pump inhibitors, so make sure the one you take is. Taking them together has an additive effect because more histimine is blocked thus reducing your chance of an allergic reaction common in vanco.
The combination of these medications works well for any type of allergic reaction, I use it in spring when my seasonal allergies are driving me crazy. I am sure each doctor has his own method, but if you are starting this you will probably going to do the test dose in the office because the reaction possibility is higher than most drugs.
I just found out I am on a lower dose of vanco then I have been before so hopefully I still get the positive results with a less severe cytokine reaction. I hope you feel better.
Take care, Lindsay
Posted by blinkie (Member # 14470) on :
The itching of the head is called red man synrome. I get it everytime I start IV vanco. But, they slow down the infusion and I never get it after the first dose.
It cleard my memory problems completely as well as a lot of foggy brain stuff. Granted, the memory loss is creeping back, but, I don't think I did it long enough and I still had mega-co-infection problems going on which ws likely hindering completely erradicating lyme into remisison.
Give it a try. It really is one of the best in the lyme arsenal.
Posted by LuLuFlorida (Member # 12066) on :
Red man syndrome of to make you turn 'red ' from flushing. I was in the er with a 106 fever and the nurse left vanco wide open, luckily I had been on it before and did not react.