Someone mentioned a new Lyme culture test, but noted it can't be given if you are on or have recently taken antibiotics...
What is the name of that Lab?,I am in need of a more definitive Lyme test to prove to my insurance that I do indeed have Lyme and need a port or PICC, but have been on oral antibiotics awhile. These are my results from standard western blot Lyme tests:
November 2013; Local lab showed IGG bands positive on bands 93, 66, and 41. IGM was all negative .
Got 6 weeks of azithromycin.
Retested late February by local lab and Igenix:
Local lab results all negative.
Igenix showed IND on band 41 of the IGG and on the IGM showed + on 30 and 41 and IND on 83-93 (strange results - initially showed + bands on IGG then later showed + on IGM. Isn't that backwards?)
So, even though there have been positive bands, I am always a band or 2 shy of calling it a positive test by either CDC or Igenix standards.
Coinfection tests were done by local lab, and you guessed it, negative....
I have been told by my LLMD that I have advanced neuro Lyme and must be on 6 mos. of IV if I want the symptoms to clear up...
Now I am scheduled for a stupid spinal tap as the LLMD is hoping it will show positive for Lyme. From what I have read on here, spinal taps aren't reliable. Arghhhh!
urine tests? How else can I prove this is Lyme to insurance?
My symptoms are pretty severe and was told they are suggestive of Babesia too. Apparently I have had this for years, it just wasn't diagnosed as such. my LLMD is stumped which, honestly, has me concerned - I think he is wondering, " is this really Lyme?" I certainly don't want an IV for long term meds if this isn't Lyme, but I know it is...
Recent routine blood work came back within normal limits, just my D was low as usual. SED rate normal...
What is the CD57 test?I am getting really desperate. oh, I should mention I have had numerous brain MRI tests, CT scans and all normal.
I am supposed to get more testing done tomorrow - Igenix testing for Babs, but I have been on antibiotics, and therefore, the results will most likely show - yep, you guessed it again, NORMAL! At this point, I have such vertigo, constipation, air hunger gulps, balance issues, insomnia, sluicing speech, memory issues, finger dexterity (can't hold pen to write fluidly), intolerance to any liquor, and purple fingers (when I put them in warm water, they turn a motley dark purple), etc, etc. I am soooo frustrated. Oh, another wrench in the works: I have swelling, fluid, on my elbow. I've had it a long time. I had it drained and biopsied for Lyme. came back negative. It filled again a week later. I had it drained again but did not get it sampled because my insurance wouldn't cover the second one. My luck, when the doc drained it the second time, he said: "the first sample didn't look like Lyme fluid - it was too thin and clear. But this sample does" and he said it as they were discarding the sample. I wanted to scream "STOP!" But it was too late. My luck just never ends!
What would you do? Would you get the stupid Spinal tap in hopes of it showing Lyme (or not showing MS which is what the stupid ID doc told me he thought I had). The neurologist examined me and reviewed my MRI with a fine tooth comb and said "I don't know what you have but it doesn't appear to be MS"
I KNOW I have Lyme. Got bit numerous times by ticks, found the rash on me just once. There are lots of woods and deer here in Suffolk County. I've had lots of loving dogs, all of which tested positive for Lyme. My sister, mother, step dad and nephew have all had it. This is an endemic area!!! "
Please help me figure out what to do next. I will pay for whatever test I can have to prove its Lyme so I can get the much needed IV. I have spoken many times to my insurance company, and they will do what's necessary provided I can prove its Lyme!
Any suggestions would be greatly appreciated!!!!
Post Edited (Dannarahn) : 4/28/2014 8:58:38 PM (GMT-6)