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280418 tn?1306329510

Got Igenex results!

Positive IgM bands at 39, 41, and 58.  Positive by Igenex AND CDC.  This is crazy.  My IFA, B Burgdorferi G/M/A was 1:40, which is considered "Indeterminate".  IgG was positive for 41 and Indeterminate for 39.  The Multiplex B Burgdorferi tests were negative.  

I am in shock.  I literally just got home and had to type you guys.  I don't understand the results completely, because I thought IgG showed an exposure - and I was negative on that and positive on IgM, which is active infection?!  Either way, my PA skurried out the door and I could barely hear he and the doc talking, alot.  The doc came in and I haven't seen him in almost two years.  He said he wanted another MRI of my brain to see if any new lesions are there (I have one non-enhancing) and then will probably start Rochephin through an IV, for several weeks.  He is definitely saying, "holy cow" I have to deal with this.  He said "probable Lyme Disease."  He is being proactive and open to it though.  He wants me to talk to a friend that is very knowledgeable about Lyme before treatment.  With this aggressive doctor, do I even need a LLMD?  I know he talks to them for advice...

What do you guys think about these results?  I had two Labcorp WBs come back negative, with a positive ELISA.  Now Igenex has really upped the game.  I am somewhat relieved and somewhat upset, but definitely more relieved.
9 Responses
373367 tn?1246405635
Well, at least you have some answers!

Here is some information about your bands:

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

58: Heat shock protein.

The IgM is the first antibodies to be produced, but according to my LLMD the bacteria can constantly change its expression and thus triggering our immune system to keep making different IgM.  He considers that it is an "active" infection if you have IgM.  The IgG take longer for the body to make and are more indicative of a longer term infection.

The only concern about letting your doctor treat you is that he might put a limit on how long he will treat you.  I don't blame you for wanting to just go with your doctor that you already have, mine wasn't really willing to treat me.  

I guess I am wishing I had done the rocephin right off the bat myself.  I also have brain lesions.

My guess is that you will probably end up with an LLMD in the end because they are the only ones that look at the entire spectrum of issues caused from tick borne infections and know how to address them.  They are also able to treat you until you are well and won't just give it a few weeks.  I am sure that I would have let my GP treat me if he had been willing, though.  It sometimes does take a while to get into one, so you could hedge your bets and make an appointment.

Just some thoughts from someone a year down the road from where you are at  right now!  keep us updated!
Stacey
Avatar universal
Congratulations!  Sounds like a terrible thing to say to someone who finds out they are ill, but you already know that you were ill ... so this is good news to get a diagnosis.  Now to the treatment.

I'll let others comment on the test results specifically, but will say what I think about staying with your current dr versus going to an LLMD.  Just my opinion, but since you asked ...

My LLMD does not want to be anyone's general/main doctor, but wants to be just the specialist who advises only on the Lyme stuff -- otherwise the LLMD becomes a regular doctor and can't focus his/her time on Lyme.  I lost my GP along the way to a diagnosis of Lyme, but ideally I would have a GP/internist who believes in Lyme and coordinates with my LLMD so that the speciality care gets taken into account, with respect and communication between the two doctors and of course with you, the patient.

It sounds like you may have the perfect set up to do just that:  stay with your regular dr for general matters, and also as someone who could keep an eye on you and send you to the LLMD if something seems not to be working well between your regular LLMD appointment.  (My LLMD does follow up appointments only every 3 months.)  

Here's my opinion:  I would not personally want my GP/internist to be trying to learn his way through Lyme on my time -- there are too many tricks the Lyme bug plays and it takes an expert to keep up with it all and to make treatment changes appropriately depending on response and further testing during treatment.  I would definitely want to see the LLMD regularly, and also see my GP regularly with a broader view over my health.  They should work together for your benefit.  

(Parallel situation:  If I had cancer, I would not keep seeing my GP for treatment, knowing that it was not his/her specialty but that he/she was having regular phone calls for guidance from the cancer specialist.  I want to see the specialist, and as a matter of medical prudence and caution, I would hope the drs see it that way too.)

You got their attention at last.  That is a victory to be celebrated!  Now to get well.  Best wishes to you --
Avatar universal
Congratulations !!! I remember your post in the autoimmune forum and we were discussing lyme and fibro. I'm so happy for you and wish you the best with your treatment plan !
280418 tn?1306329510
Isn't it funny that we are all happy about this!?  I too, celebrate a diagnosis.  I would never wish myself to be sick, but I'm already sick - with or without a diagnosis, so why not have one that can be treated!  

Thank you for the information.  I have been surfing all afternoon until I exhausted myself!  The info. on the specific bands is interesting.  I will keep you posted!
428506 tn?1296560999
I had the same IgG bands as you (39+ 41+++ in my case) and on IgM only 41+, and never a positive ELISA.   You've got plenty of evidence to consider treatment.

I haven't been offered IV rocephin, yet I also have brain lesions.  Please do keep us posted.  I'm getting frustrated with how long oral treatment seems to be taking!

I agree with the above, it sounds like you are off to a good start with your current doctor, but perhaps try to gauge him on how long he will treat you.  Many LLMD's take the approach to treat about a month after ALL symptoms resolve, and retreat if relapse occurs.

Good luck, I hope this is "it" for you.
Avatar universal
I'm not surprised by your results.  You have a lot of lyme symptoms.  Now you know what is wrong.  It's up to you but it sounds like you have a good doctor to start but you may only get the standard, short treatment and not what you really need to cure this.  You could see how it goes and decide from there.  Or you could make an appt. with a LLMD so you are ahead of the game.
237053 tn?1258832026
I am so happy you got some answers!!  No more wondering!!  That right there should take a load of.  Good luck with your treatment and results.  I wish the best for you!  Keep us posted!
280418 tn?1306329510
I think my neuro is in it for the long haul.  He wants me to consult with a fellow Lyme sufferer who heads up the Lyme support group in this area.  He is known for offering "other than conventional" treatment.  That is why I like him:)  He has the guts I believe.  If not, I'll slide on over to an LLMD with no hesitation, other than the $$.  Not looking forward to the costs of treatment.
Avatar universal
I had Lymes for 3 yrs undiagnosed.  Finally two years ago I was infected again and 2 bulls eye showed up. I am in MD and we only have 1 lyme doctor who has a 2yr waiting list so my GP sent me to an infectious disease doctor.  Lyme is nothing to play with.  I have had 6 Lumbar punctures before it was diagnosted.  I was put in hospital in intensive care with menigentis for three days. WhenI was discharges with an pci line with intervenous antibiotic for 3 months.  Days letter I developed Bells Palsy.  After 1 year I have developed sleep anepa, stroke, seizures, eye spells whereI can't se for minutes, chronic pain clycloma (sp) and the list goes on.  I was originaly told to see a Pschiatrich help.  I know that soulds like I am crazy but this is all from a deer tick.  Please make sure you get proper treatment.  I went on the web site and me and my docror learned together. Good Luck!.
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