Three totally unrelated questions, but questions nonetheless...
1. Two of my LLMDs have recommended acupuncture. Does it help/hinder? Has anyone really seen benefit from it? Or is it yet more money down that big 'ol lyme toilet ?
2. I am currently on my third month of IM bicillin (and, yup, my butt is starting to look like a road map ) Anyone receive benefit from it, when not much else has worked, and, if so, how long before you started to see results?
3. My current doc has ordered a minimum of 4 months of IV vancomycin, if the IM bicillin doesn't do anything. Again, anyone have any opinions on this one?
Thanks...as always!
~tri
Posted by triathletelymie (Member # 26456) on :
Anyone?
Posted by blinkie (Member # 14470) on :
I do! I do! I LOVE, LOVE, LOVE IV vanco! It was my lyme miracle drug. I did 4 months of it and wish I had done longer. If you can get IV vanco, go for it and stay on it as long as you can.
In my personal opinion, it is the best lyme drug there is.
Posted by sammy (Member # 13952) on :
Acupuncture does help relieve symptoms. I wish that I could do it every day! It in no way could hinder your progress. I feel much better after my acupuncture treatments. My doctor says that it alone cannot cure me but it can help strengthen my body to help me better fight the infections.
About the Bicillin, are you doing the injections at least 3x per week? I could never work up to that dose. My doctor insisted that was necessary. Also, you may need to give it more time. 3mo is not very long for any antibiotic protocol (to really see major progress).
Vancomycin. I would personally hold off on that until you have tried most all other treatment options. Why not IV Rocephin first? Vancomycin is notoriously toxic to the kidneys. You must have your labs monitored frequently, at least once weekly to make sure that you are not harming your kidneys. Also the levels of medication can fluctuate easily. So this will require many trips to the lab which as you know is not fun or easy to do when you are sick.
Of course, these are all just my opinions. You must trust and talk with your doctor and make decisions based on what you think is best for you.
Good luck Posted by triathletelymie (Member # 26456) on :
blinkie - a few questions...
1. Did the IV vanco get you well? 2. Why did you think that you needed longer...did you relapse after stopping it? 3. Any reactions to the infusions? How long was the infusion time? What about labs?
Thanks!
sammy - Yes, I have tried both IV rocephin and IV doxy when I had the picc line last year...for about seven months. And, yes, the IM bicillin was 3x/week for two months, now it is a double dose, twice a week...so I am getting higher concentration but only twice a week.
Posted by blinkie (Member # 14470) on :
I was not monitored for kidneys per se on vanco. Sammy, where did you get that info? I was monitored for my trough levels weekly.
tri-IV vanco cleared all my remaning lyme symptoms including my memory problems that I didn't even know were so bad. My memory was better after vanco than I EVER remember it being in my entire life.
I don't feel like I was on it long enough and I was not on a three combo regimen at that time. So, I would be sure to be on a three drug combo and stay on it longer. It has been over a year since vanco and I'm holding most of my gains from it but my memory has slipped some. That being said, I have some other complications too, like many co-infections and hormones and a trashed gut and major yeast. So, I don't know what is what at this point.
I would do IV vanco again in a heartbeat. It was one of the easiest drugs I have ever done as far as side effects go. I did have the complication of have very efficient kidneys and thus, I had to infuse every 8 hours without fail and that became challenging. Other than that, it was a good experience.
I will NEVER do IV rocephin. I have seen too many gallbladders lost and treatment failures with it. That is my personal choice.
I think IM bicillin is great at 3x a week but, it's a tough protocol. Those shots hurt more and more over time. I did IM gentamicin for a month and would chose IV over shots again anyday.
Posted by laurie sm (Member # 14584) on :
I was on IM Bicillin injections for 8 months and did not start feeling better until right before I stopped them. At month 3 I was ready to give up but I am so glad I stuck with them! It has now been 3 months and I feel better than I have in almost 5 years.
My dr. said some of his patients report that they dont feel better until they stop the Bicillin because there is a continuous herx.
I also had 6 months of IV Rocephin in 2008. Although the injections were awful I still thought it was better than the IV. My butt felt better very soon after I stopped and feels fine now.
Posted by sammy (Member # 13952) on :
Therapeutic monitoring of vancomycin in adult patients: A consensus review of the American Society of Health-System Pharmacists, the Infectious Diseases Society of America, and the Society of Infectious Diseases Pharmacists
It is a long article but well worth reading. Here are some direct quotes:
"Vancomycin has long been considered a nephrotoxic and ototoxic agent. Excessive serum drug concentrations have been implicated, and it was assumed that monitoring of serum concentrations would allow interventions that decrease toxicity."
"Although the definition of vancomycin-induced nephrotoxicity has varied, a reasonable composite from the literature defines this adverse effect as an increase of >0.5 mg/dL (or a ≥50% increase) in serum creatinine over baseline in consecutively obtained daily serum creatinine values CLcr of 50% or a drop in calculated from baseline on two consecutive days in the absence of an alternative explanation"
"Vancomycin destruction of glomeruli and necrosis of the proximal tubule are thought to be due to oxidative stress."
"Human trials have suggested that trough serum vancomycin concentrations of >10 mg/L are associated with an increased risk of nephrotoxicity."
"Recent guidelines have recommended target trough serum vancomycin concentrations of 15�20 mg/L.41 However, the safety of higher trough vancomycin concentrations over a prolonged period has not been sufficiently studied."
Blinkie, it is well known that Vancomycin is nephrotoxic. Your doctor probably ordered routine CBC and CMP along with your trough levels to make sure that your kidneys were functioning well.
Triathletelymie, I'm not trying to scare you. I just want you to be aware that there are risks with taking IV Vancomycin. It is usually reserved as an antibiotic of last resort. This is something that you and your doctor will have to discuss and decide if it is right for you.
If you chose to take it, make sure that you have blood work done frequently to monitor your vanco trough levels and your kidney function (BUN and creatinine levels). Your doctor should know this. You only have one set of kidneys, you need them for life.
Take care friends Posted by Keebler (Member # 12673) on :
- Acupuncture can help in so many ways. Best if with an ILADS-educated LL L.Ac., though. A L.Ac. is also educated in herbal and nutritional support.
Some NDs (or those of similar degree) also have L.Ac. certification - but not all do.
Links to many articles and books by holistic-minded LL doctors of various degrees . . . . -
Posted by nonna05 (Member # 33557) on :
I saw plaqunel on post protocol,,,is it needed with shots?/
how does it help/or not?
It sounds like these shots really hurt..but been told that's the only way some get over the crest....
How much is food or supps involved at that point?
Posted by David95928 (Member # 3521) on :
It took Bicillin at least five months to BEGIN to help me. IMHO it's a good maintenance drug for many and not associated with much in the way of side effects, except for sore butt of course.
Posted by triathletelymie (Member # 26456) on :
Anyone else?
Posted by sammy (Member # 13952) on :
If you feel like you need a change, maybe you could ask your LLMD to switch up some of your oral meds to go along with your IM Bicillin.