I think this must mean I finally have a diagnosis.
I am shaking and don't know what to think. After all these years and all the tests.
All inconclusive.
I still cannot believe this.
I had called my GP's office on another matter - and was surprised when the nurse told me that I had a test come back positive. Which test I wondered. I had given up on the direct test - assuming negative - since it has been ten weeks since my sample was sent to the lab. I guess my culture grew just days before the cut-off date. I was told to see an ID.
Just received copy of the report. Have checked it ten times to make sure it is my name and there is not a mistake.
The "other matter" was my ER stay last week - I needed to see my GP as follow up. In the ER I received IV Rocephin for acute bronchitis. What a coincidence. At the time I did not think I had LD. It was a miracle drug. I felt like a different person after two infusions. The acute bronchitis seemed to resolve - and everything in my body seemed to have calmed down.
Days later I feel all symptoms again.
I have been sick for 15 years - very sick past five. I am one hour into knowing I have LD.
Will it sink in and will I believe it?
[ 02-13-2012, 07:53 PM: Message edited by: susank ]
Posted by Lymetoo (Member # 743) on :
Positive for what? Is this the new Lyme test?
NO, you still won't believe it! Posted by susank (Member # 22150) on :
Tutu - Lyme test. Borrelia B.
All the Igenex Bb antibody, PCR, IFA tests neg.
Epitope tests on bands 30 and 31 negative.
All the co-infection antibody, PCR, FISH tests neg.
The only thing I had to hang my hat on tick-wise was the last Bart test with IGG 40.
I was recently told by doctors that I needed to go to Baylor for testing and diagnosis. I have had the "fear" of having to do that past months. I had decided that if the new AL Bb test was negative then I was going to "cave" and go to Baylor.
Now I have the answer I have sought for so long.
I had convinced myself my reactive bands were cross-reactions.
No - I still don't believe it.
Yes I do - because I am wondering when and where I became infected.
[ 02-13-2012, 10:06 PM: Message edited by: susank ]
Posted by Keebler (Member # 12673) on :
- Susan,
I'm glad you were able to do this test. I'm sure you will have mixed emotions for a while about the results but at least now you are certain about at least lyme - and can move ahead with that information. -
Posted by Keebler (Member # 12673) on :
- For those wondering "which test?" - here are some details about this new Borrelia Culture Test:
"I had convinced myself my reactive bands were cross-reactions."
------------------
I never thought so. In my book, if it's Lyme specific, it's Lyme.
Glad you now have an answer.
Posted by TF (Member # 14183) on :
Congratulations!!!! So very happy for you!
It is terrible not knowing for sure what your diagnosis is. Now you know FOR SURE!!!!
Thanks to Dr. Burrascano!! He did this for the lyme patients of the world!!!
Posted by aperture (Member # 34822) on :
quote:Originally posted by TF: It is terrible not knowing for sure what your diagnosis is. Now you know FOR SURE!!!!
Does this mean that clinically diagnosed "lyme mutts" (according to Weintraub's Cure Unknown), like myself, don't know for sure what our diagnosis is?
Posted by Lymetoo (Member # 743) on :
"Nope" to aperture. I was clinically diagnosed.
Posted by TF (Member # 14183) on :
Everybody is different. It appears to me that susank needed this test for HER to know for sure.
So, I was celebrating with her.
If a person is not convinced they have lyme, it is difficult to persevere with lyme treatment. That is what I have observed over the years.
Posted by Allie (Member # 10778) on :
Hi susank, Did you treat with antibiotics before the culture test? If so, persistence is once again proven.
I hope you get good treatment and feel better soon.
Posted by susank (Member # 22150) on :
Ugh - the doubt is creeping in again.
Someone please assure me that IVIG could not have effected the culture test. I know there can be Bb antibodies in IVIG - but they would not grow/culture. Bb cannot otherwise be transmitted via IVIG right? IVIG is "washed" of such things, right?
In support - my H-NK cell count: 32. HLA - I am 15-6-51. Chronic Lyme/susceptible.
Tutu - all the bands I reacted to other than the double starred are believed to cross-react.
My specimen waiting until the tenth week to reveal itself could be due to: low load or my "strain" is a slow grower.
A low load and/or slow grower is better than a high load and fast grower, right?
Oh, Allie - yes - had taken Abx on/off past years. Never continuously but six weeks then off. IIRC this done mostly for challenge tests. I did not feel the Abx did anything for me. (I think another reason I doubted Lyme as a Dx).