Well despite being pretty much bed ridden and not being able to breath well, I think I finally got my answer on if I've had fibro or lyme this whole almost ten years.
Back in 2007 I was tested for lyme and only band 58 came back positive, which until I saw this article, I had the understanding that is was a shock protein to bb but not specific to lyme which did't make sense anyway.
According to this band 58 IS specific to lyme. The doc I see now is the one that tested me, and regardless should have treated on my symptoms alone. I'm so aggravated right now , I could cry. I'm just upset, so sick can barely move.
I understand that everyone has gone through years and years of suffering , but it makes me mad that I was seeing an llmd in 07, had a positive test + clinical signs of lyme but treated for fibro by an llmd??
Revised Criteria with Western Blot 1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
2. Can diagnose Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
5. If positive for Borrelia on any test, consider testing for neurotoxins
6. Consider testing for co-infections (discussed below)
7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)
Posted by soccermama (Member # 35101) on :
What article are you talking about because I would be interested in reading it?
I am so sorry that you have suffered so long. My prayer is that you will get quality medical treatment now.
Posted by Lymetoo (Member # 743) on :
There is HOPE for you! I had Lyme for 42 yrs before being successfully treated!
Posted by shannon12 (Member # 36149) on :
just to clarify too, I have also since been positive beyond cdc guidelines one year ago, all bands igg and igm reactive.
lymetoo- i am sending yo9u a pm
Posted by Robin123 (Member # 9197) on :
Hi - what revised criteria is this? I agree - any one positive band means positive. Perhaps your doctor was going more on what IGeneX wants - ie 2-band positive, and certain ones? That needs to change.
Posted by shannon12 (Member # 36149) on :
Yes, this just really caught my eye, it was the proof i've been looking for.
I don't hold my doctor totally accountable, I still see the same one that I've been seeing for "fibro", just think he would have caught it all those I saw him.
And I was willing to look past all of that, but I'm sitting here thinking I'm sicker than ever after almost one year of aggressive treatment, I called the office last week to get treatment for babesia, they just emailed me back yesterday and told me they called in prescription for mepron.
But they didn't my pharmacy never got an order, so I called them today and I'm waiting the return call, which will probably be next week.
I feel if I were in my doc's position, I would try to help me as best as I can, especially since he himself could have prevented this situation I'm in now. But he doesn't listen to my sypmtoms, does not want to treat any co infections clinically.
Posted by shannon12 (Member # 36149) on :
soccermama-thank you, i've been on aggressive treatment for a year now, but just really hyped up as I'm still seeing the same doc that told me I didn't have it back in 07, I mentioned this to him when i went back to him last year when i became reinfected and sicker than ever and he was still telling me no it was not lyme all along.
He also said especially if you just got the rash the past year, come to find out that when you get the rash , you most likely have already been infected..
So i'm just really aggravated, have to make the decision to find another doc, i have one in mind, but is so hard right now, I'm literally on my death bed,,
Posted by Lymetoo (Member # 743) on :
Some doctors believe that when a rash shows up, you've already had the Lyme in your system previously.
Posted by Lymetoo (Member # 743) on :
--I'm posting this so others will become more aware of the resources on this site.
Posted by shannon12 (Member # 36149) on :
yeah that's where I found it , not sure why I never saw it before, it's just wierd I would do google searches on the wb test, specifically band 58 and it's meaning, and all the info always told me it's NOT specific to lyme but a heat shock protein reactive to bb??
But I never understood why you would have a protein react to bb if it wasn't in your system?
Also I think this article explains it really well and simple.
Posted by Lymetoo (Member # 743) on :
Dr C's explanation update (2005) says this:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."