help with igenex results - new on this forum

[keeptrying]

Hi. I am new to this side of the forum! I have been a frequent viewer of the PANDAS forum and never thought I needed to be on the Lyme side, but here we are. I am sure these topics have been discussed many many times, but it would be really wonderful if I could get some feedback on my dd's Igenex results. Just some quick past history: dd10 has had mainly tics with minor OCD for almost 6 yrs now. We have tried everything. We came upon the possibility of PANDAS last yr and finally did ivig 10 wks ago. We did do igenex testing last yr and I was told by 2 doctors that my dd did not have Lyme and to move on. A respected doctor also told me that neurological symptoms have never been from lyme...I am reading that may not be the case with everyone. The doc we are with now would like to treat for babesia. The following are our results:

 

IgM Western Blot Neg but had band 31 IND and Band 58 ++.

 

IgG Western Blot Neg but had band 31 and 39 IND and band 41 ++

 

B Ducani IFA was IGM 1:40 titer which said may or may not indicate infection. The IGG was negative

 

What does this mean? Any help would be appreciated.

 

Concerned about starting Lyme treatment when we do not know if ivig has helped yet.

 

Thanks!

[Suzan]

Hi! I always have mixed emotions for a new member, no one wants to have lyme but it's always better to know so you can start getting treatment! Be sure to check out the explination of what each band represents. I think it's located in the Helpful Threads for Lyme Disease post at the top.

 

My 10 yr old daughter (age 9 at the time of her test) had the most symptoms between the three of us but a negative test (results below). After 2-3 months on lyme treatment, her test turned positive. She is doing really well now. We are still working through her remaining symptoms but her nightly pain and period of of not being able to walk and extreme emotional liability are gone.

 

oldest dd's initial igenex results

IgG results, bands 31 and 34 were indeterminant. Band 41 was positive.

IgM results - band 41 indeterminant

 

Good luck and I know you will get a lot of information here!

 

Susan

[LNN]

Yes, read the helpful links section for the articles that explain the bands. We're treating for lyme with Bands 31, 34, 39. In my own experience, when my son has badly herxed from lyme treatment that got too aggressive, he looked exactly the way he did when he had Pandas immediately after 2 confirmed strep infections. In his case, the symptoms overlap immensely. The herx brought OCD, tics, adhd, no impulse control, dysgraphia, urinary frequency, brain fog - there was no choriform movements with the herx. But other than that, I was hard pressed to say it was any different. I'm not a doctor, but I have to strongly, strongly disagree that neuro symptoms aren't caused by lyme and you can find a great deal of research backing that up. Just go to Columbia University's lyme center and Dr Brian Fallon's research on neuro lyme. Baronella is widely suspected when neuro issues are predominant in a lyme patient. Whichever doctor told you it wasn't from lyme is just not well informed on the topic.

 

Now, whether that means you should ditch Pandas in favor of lyme, that's something only you can decide once you've read enough and put it in your own context. Some members do both a lyme protocol of multiple ab and IVIG for their lyme kids. Some stop the IVIG or never did it to begin with. If you've come to this forum, I'm guessing something is causing you to look for answers. I try not to give an impression that any advice I have is "the" answer for you. My only guide is that when we tried all the Pandas treatments (Pex, steroids, IVIG, long term single abx) and DS didn't stay well for more than 2 months at a stretch, didn't follow the "script" and stay in remission the way he was supposed to, then it meant something was still undiscovered, untreated. That's what led us to lyme and bartonella. And when that got us further, but not completely there, we looked eve further and discovered a zinc deficiency that was hindering his immune system's ability to fully fight. So we're still at it, but much further ahead than we were when we were on the Pandas trail.

 

So my only advice is that if you have nagging doubts, if you didn't get what you'd hoped for with IVIG, if something you read about lyme or bartonella or babesia resonates with you, then I think pursuing treatment with an experienced LLMD would be a reasonable next step. However, if the doc you are with now (the one who wants to treat the babesia) is not an LLMD, I would encourage you to set up a consult with one. My own experiences with well-meaning but inexperienced doctors trying to treat lyme gave us frustrating results. It's too complex to not see someone who does this every day, especially with kids.

[LNN]

double post

Edited August 30, 2011 by LLM

[mama2alex]

Welcome to the forum, but sorry you are dealing with all of this. We found the Lyme/coinfections diagnosis so hard to believe, we ignored it for a year - something I really regret. We too had a couple of IND bands and not much else to go on except a positive Bartonella test - and we had never heard of Bartonella so we didn't take it that seriously. So I understand your skepticism.

 

Regarding your test results, bands 31 and 39 are specific for borrelia, so this alone merits further evaluation by a Lyme-literate doctor. IND means there was a reaction, but not a strong one. This could be due more to a weakened immune response than to lack of the bacteria. Are you seeing an LLMD or another type of doctor who wants to treat for babesia? Do they also want to treat for borrelia? I'm just wondering because it sounds like your doc thinks the babesia results is not glaringly positive, but still wants to treat.

 

If you haven't seen an LLMD yet, I can't stress enough how important this is. If you let folks on this forum know what state you're in, I'm sure someone will be able to recommend a good doctor. Once you've done that, if the LLMD recommends treating, I would try not to worry about it. If you did the IVIG 10 weeks ago, you would have most likely already seen a big improvement if it was going to happen. I wouldn't wait because of that. Also, if you think about it, giving antibiotics is less invasive and lower risk than IVIGs.

 

By the way, I like your screen name - it sounds like you are definitely living up to it!