I hope you all are doing well. I have stayed off for awhile because of my rage and saying things I shouldn't have.
Many of you know my story and have given me wonderful advice and support throughout this horrible time.
For those of you that do not know my story that would like to see some of the things I personally have gone through, I believe "Going In The Hospital" under General Support gives a lot of information.
It hit me today, after reading some other posts that I have not ever given my Western Blot Test Results. I would like to have any opinions you all may have since, as of right now, "I Don't and Never Have Had Lyme", they say. (The ID Ducks, Neuro's, etc.)
I AM still searching for an LLMD.
Here goes:
The best I can tell, there are 15 items listed in the WB test. For me, the "reactive or positive's" are:
41 KD (IGG) Band = Reactive B. Burgdorferi AB = Positive 23 KD (IGM) Band = Reactive 41 KD (IGM) Band = Reactive
The ID Duck in the hospital that said "I do not know why you are having a LP", they were there with the gurney to take me down, (which I now know doesn't show Lyme), "YOU DON'T HAVE LYME".
I went to pull my Western Blot Test out and he held up his hand as if to tell me to stop talking, and said "I've read your test". YOU need to read the FINE PRINT???
What do you all think?
I did print the info on "All I Got Was A 41 Band" by the Montgomery County, MD and gave it to my GP.
I also printed the Advanced Topics In Lyme Disease (37 pages) Sixteenth Edition for her.
She took very willingly and said she would read them.
This was at my hospital follow-up visit this past Friday. I requested her to please run a Babesia test and an EIA IGG and IGM. She accepted my request. She will do whatever she can to help me.
They all came back negative when I called yesterday. She also ran a "doppler" on my legs because of the numbness and tingling in my left leg. No clots.
Any input would be appreciated. Still search for an LLMD?
Thank you all!!!
Posted by sixgoofykids (Member # 11141) on :
I would search for an LLMD. You did have positive bands. It doesn't look like it was an IGeneX test, so you might want to have one of those run.
Posted by Lymetoo (Member # 743) on :
Yes, pursue a dr and a test thru Igenex.
Is this "B. Burgdorferi AB = Positive" an ELISA??? If so, then you have lyme right there.
If this dr is truly willing to help you, then you could probably talk her into running the Western Blot from Igenex.
www.igenex.com Test #188 and 189
Posted by TerryK (Member # 8552) on :
Per Dr. C's WB explanation: http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077 "In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."
You have 2 bands listed above. As you've no doubt read, you can have a negative test and still have lyme.
The response from other doctors is typical. I am not a doctor but in my opinion, the best way to know if you have lyme is to see an LLMD who will treat to see if you have a response.
I'm glad you have a GP who is cooperative and she can be helpful in your situation but really, you need an LLMD to properly evaluate your case.
Terry
Posted by julier212 (Member # 26408) on :
I sent you a PM about the LLMD in MO.
Posted by Consuelachacha (Member # 26538) on :
Dr. Du is the Rheum. that ran the Western Blot.
My GP is the one that is trying so hard to help me. She just ran the Babesia and EIA IGG and IGM at my request. They came back negative.
Lymetoo> What does "Is this "B. Burgdorferi AB = Positive" an ELISA???" mean? The B. Burgdorferi AB was on my Western Blot test and is was positive. Is ELISA a different type of test?
Igenex: Is this a different "Lab" to request my test to be sent to? At the bottom of all the pages of my labs, it states "Performed by Quest Labs".
I thought I had my thoughts on this together. Now I'm getting confused.
My GP, I know, would be willing to run the tests I request. I just need to be sure I state the right information for her.
I need an Igenex test?
And the Rheum. just called me and wants to put me on Plaquenil again. My GP gave me 4 days of Prednisone which helped my joint pain significantly, for 5 days.
The Plaquenil is an anti-maleria sp? drug that I was put on when I was dx with Lupus. I remember gaining about 35 pounds. Not sure if it was from this drug or the steroids.
No more steroids for me until I cannot bear the pain anymore. Gaining all that weight again, just makes the joint pain worse.