IGenex results in

[wornoutmom]

Well, I've been sitting on the WB results for my ds14 now for 10 days, trying to decide how I feel about them and the ordering dr's thoughts. The dr. feels ds14 does not have lyme based on clinical symptoms and test results, but is open to re-testing in 4-6 weeks if we want - just cautions the $ may not be worth it. He feels we are already doing the safe but sorry thing by treating with abx full strength since April.

 

Anyway, I'm on the fence about all of it and ready to hear other's opinions. Results were: IGM: ++31, +83-93, IND 41. A "possible positive". IGG:+41, IND39. A "probably negative".

 

So I'm not concerned about the 41 - ds has had myco p. which could give this result as a false positive. Band 31 could also be false pos. due to EBV (another known past infection). I have not been able to wrap my head around a "false positive" reason for the +83-93. What also concerns me is that the positive results were IGM!!! Correct me if I'm wrong, but IgM usually indicated recent or active infection. So even if it's not lyme, I would think this mean he has SOME type of current infection. ?? Any thoughts on this?

 

I'm trying to decide the next step. Just make an appt with LLMD and let her interpret results and/or recommend further testing if warranted (this means an hour and a half drive, and back on the doctor merry go round)? Go ahead and re-run the tests in a month and see what they show? Use a different lab for re-testing? Use a different type of test? Pull him off abx and then re-test?

 

Any input or opinions on all this is welcome.

[MichaelTampa]

Sorry, but I don't remember what symptoms your son has. I really think most LLMD's would diagnose lyme with those results, if the symptoms are consistent with that. Just as a comparison, I had 39 IND for IGG and IGM, and 41 positive (one + and the other ++), and everything else negative, and my LLMD pointed at the 39 IND as highly significant, even moreso than the severely depressed CD57 test result that it seems he does not trust (some do, some don't).

 

As far as next steps, I don't think it's worth any time or money to run that same test again, it has revealed enough already. I would be looking for an LLMD appointment as the next step. In the meantime, you might also look into supplements and other steps that can help with lyme, and, if it takes you many weeks to get in to an LLMD, you and the doctor (if open) might also reevaluate the abx regimen in the meantime. What abx are you using and what results, if any, are you seeing?

[sf_mom]

I agree with everything Michael has said. Our Dr. would treat for Lyme based on specific bands present and positive IgM results.

 

I too would be looking for a good LLMD to help immediately. A good Lyme Dr. would look at those results a be able to give 'proper' perspective and perhaps do further confirmatory testing 'to make you feel more confident' that Lyme is involved. Additionally, they can put your money to good use and start the process of testing for additional co-infections other than mycoplasma that might be an issue for your son i.e. Bartonella and Babesia. Rather than spending more money on follow-up testing that might have similar results. In treating for Lyme they use multiple antibiotics to attack outer cell wall and inner cell.... In order to really provoke Lyme and create the proteins/antibody response your son would need to be on a similar protocol for perhaps several months to 'turn' results differently.

 

Band 39 is highly Lyme specific and Dr. Ann Corson spoke about it at the ILADS conference in Oct. and have a copy of her slide presentation and would be happy to forward them. I'll need your e-mail via p.m.

 

If I remember correctly, you have some indication of symptoms yourself.... and would consider asking the advice of the LLMD with regards to testing for you.

 

I am sorry... but I forget where you live? Perhaps some can point you in the direction of LLMD.

 

-Wendy

[philamom]

Unfortunately, a positive IgM result can mean a new infection OR a chronic, persistent infection. Here are my dd's Igm results:

 

June: positive 31,41,58; double positive 83-93; ind 34 & 39.

Sept: positive 41,83-93, double positive 31, ind 34.

 

We also now have a positive Bartonella Henselae thru Specialty lab and positive RMSF IgG thru Quest. We are seeing good results with new antibiotic protocol (including weekend cyst buster).

Edited November 4, 2010 by philamom

[KeithandElizabeth]

I know that Dr. Jones told someone i know that a positive 31 on the IGM often means that the person has had lyme longer than one year.

 

I definitely agree with Wendy and Michael in terms of finding an ILADS doctor to help you because finding and treating the coinfections is critical.

 

My daughter was IGG positive and IGM negative and she is almost done with lyme treatment. She is doing fantastic and our son, who had the 6 IVIG's, is also doing fantastic on lyme treatment. They are both over 95% better in terms of "PANDAS" symptoms. The lyme treatment was VERY bumpy but seems to be solving our neurological/psychological issues.

 

Elizabeth

[wornoutmom]

Michael - ds was diagnosed PANDAS at age 7 - he'll be turning 15 next week. Over the years he's had every symptom you could name except hallucinations and true anorexia. He has never been symptom free since his first strep triggered exacerbation ( showing symptoms even before this) at age 6, but got significantly worse again at age 12 and 14. Before PANDAS treatment began in the spring of 2010, his very worst symptoms was exorcist-type rages/terror attacks and inability to find words/finish sentences. He was also showing OCD contamnation, need to know, vocal tics, school anxiety and a few episodes of chorea during rage attacks. He's been on Biaxin since April/May, did a 5 day steroid burst, and had IVIG in June. By August vocal tics had faded, motor tics gone, rages gone, beginning to verbalize thoughts and feelings better. But the general anxiety was still there and he began having panic attacks. Things fell apart when high school started and we started him on xanax. This drug has helped a lot and he is functioning fairly well now. But the thing that made me pursue the lyme test was his constant fatigue (sleeps 8 hours, naps 3 more) and the "mystery illness" that cycles around every 3-5 weeks or so where he just feels lousy, like he got hit by a truck, with headache and weakness. All the physical symptoms could be somatic from the anxiety. But there was just something about it that makes me go hmmm....

 

Sorry, but I don't remember what symptoms your son has.

[sf_mom]

You've been through a lot and your story reminds me of Nancy D's daughter who is currently 14.

 

I would expect your son's remaining issues to resolve with Lyme treatment protocol. His remaining symptoms are very similar to my friend's son post 3 dhIVIGs and found to have Bartonella as well as Ehrlichiosis. The anxiety/panic attacks/residual OCD/fatigue have resolved and he started Lyme treatment June 28th. He is no longer positive for Bartonella or Ehrlichiosis (retested in Sept). But, anticipate to have issues crop up when they start cyst busting antibiotic in Jan. His remaining issues are word processing, memory loss, sensory issues....

 

I hope the gives you some perspective. Biaxin has probably been very helpful for your son's current Lyme and probably adding another antibiotic that works well with Biaxin and targets any additional co-infections will help him make tremendous strides.

 

-Wendy