Not to start up the whole Lyme debate again, but....

[HT's Mom]

I am specifically not opening up the debate again - After reading the five pages of posts on Lyme testing or not, I fall on the side of ruling anything and everything out, more information is better than less. So, in looking around to figure out what tests to order from Igenex, I saw this on the pandasnetwork.org site:

 

"Lyme Disease – Traditional Western Blot should be done for those in lyme regions of the world. Lyme is a controversial illness and testing and treatment is expensive. Some parents and doctors do an experimental/non-medically validated IGENEX lyme test that shows antibodies that MAY be present. We do not recommend this test. "

 

Does anyone know why they specifically say they don't recommend Igenex? And why is Igenex not medically validated?

 

Assuming I ignore that and go with all you parents who have tested there, what do I order to do a basic ruling out of lyme- there are numerous tests on their website. Are all the co-infections or tic borne diseases necessary too or only if Western Blot/primary test is positive? If there is a thread to simplify this, I'd appreciate the link.

 

Thanks!

Edited April 19, 2011 by HT's Mom

[Guest pandas16]

I don't wish to start a debate either but I will tell you what I have learned. I will say to start that I have never gone to an LLMD therefore what I have learned is based on the opinion of an infectious disease specialist with a specialty in Lyme. I was told by my doctor not to go to an LLMD because naturally they are going to convince you that you have Lyme. This is not my opinion- this is what a qualified medical infectious disease doctor told me. He made the following comparison about Lyme and LLMD's- This is me repeating my doctors words: If you go to a neurologist who specializes in OCD as a result of a chemical imblance and tell him you have intrusive thoughts- you will be diagnosed with OCD- not PANDAS. If you go to a LLMD, show him one positive band and tell him you have arthritis or any of the other multitude of symptoms associated with Lyme, it will be Lyme. I asked this same doctor (with an interest in Lyme) about Igenex because of what I read on the forum. He said that in his experience most Lyme tests if in fact they are truly positive light up like a Christmas tree- not just one or two bands. He said that even though Igenex tests 2 specific bands that the CDC does not include, it should not matter because positive results IN HIS EXPERIENCE (not mine) "typically light up like a Christmas tree," therefore it is not necessary. I am not sure why the test is not validated though. I believe you can find more information on the CDC website if you type in Lyme. Look also if the website you are referring to has a scientific medical board- even if it was created by a parent.

 

I should mention though that this was one of the VERY few sites that existed back when I was first diagnosed with PANDAS(before Dr. B's site)- she has A LOT of correct information about PANDAS- I really would contact her.

Edited April 19, 2011 by pandas16

[dcmom]

I have not seen the specific quote, but I believe the site is made up by parents, not doctors.

 

I think it is wiser to discuss these concerns with several well qualified docs (not necessarily saying an llmd).

 

There are just no easy answers, and if you do an Igenex, you will get five different interpretations from five different docs. In the end you will need to decide what direction to choose.

[sf_mom]

I think it would be important to ask where the information/opinion is sourced from to give you a better perspective. The website was developed by a Mother of a PANDAS son. I am sure you can e-mail her and ask the question directly.

 

You can always avoid antibody testing if this particular comment concerns you. Specifically, you can do PCR testing, Urine PCR (looks for DNA in urine) or Dot Blot (looks for antigen match in urine). There are other tests that can help support or not support a formal diagnoses of Lyme and a good LLMD could help with all of the testing.

 

Edit: If you went to www.pandasresourcenetwork.com In their introductory letter they absolutely stress the importance of checking for chronic infection inclusive of LD and co-infection. This particular website was developed by a mother of PANDAS daughter. I think she'd also be happy to explain her position, source of information, etc.

 

-Wendy

Edited April 19, 2011 by SF Mom

[LNN]

Since we're not debating, and you'd like to test to add to your body of knowledge, without breaking the bank, here's what I did...

 

I ordered the basic panel $240 (they give a 15% discount if you test more than one family member at the same time). They will send you a claim form that you can submit to your insurance company (we were reimbursed about 60%).

 

I personally did not pursue co-infection testing until after we got basic panel results. If you get positive results from the basic panel, you may decide to consult with an LLMD who may treat for co-infections based on symptoms or may use a lab to test for co-infections (e.g. Specialty Labs) that accepts insurance. While it's possible to have only a co-infection, chances are greater that you'd have both lyme and a co-infection. So we opted to test only the basic panel to get a lay of the land.

 

I'm sure there are arguments to support doing the co-infection panel or the tests that SFMom mentions and I don't mean to minimize these tests. But from a budget standpoint, I found it more helpful to start with the basic panel and go from there. In our case, it provided enough data to tell us what we needed to know.

[pixiesmommy]

I don't see why they would say that, and I think a Lyme test through your regular MD is a great first step, but you should not stop there if it turns out negative.

 

I've been tested for Lyme many times over many years via the two-stage "CDC approved" Western Blot test. You have to hit some really high marks before a doctor (who is going by CDC guidelines) will tell you you're positive for Lyme. I have always been told I am negative.

 

I did the basic Igenex panel back in Dec with LLMD #1 who told me my results were questionable. He was not willing to treat me for Lyme at that time (I am allergic to almost all abx) but wanted to treat my chemical sensitivity and see if we could decrease my arthritis. Everything, other than the Igenex test itself (about $300) was going to be covered by insurance. I opted for a second opinion at that point, since I do have a history w/tick bites and felt strongly that since Pixie tested positive w/many bands (and most ++,) that hers was congenital.

 

I took the same test to a second LLMD who was willing to treat me, and on day #4 of Doxy, I had a huge bulls-eye rash appear in the center of my chest.

 

I firmly believe that history is more important than the tests-

I have a history of tick bites, and symptoms began after one particularly bad one when I was 10 yrs old

Almost every symptom of chronic Lyme other than Bells Palsy

 

I also think that if you have had it a very long time, you aren't going to react to it on bloodwork, much like the ASO titers in our PANDAS children- the immune system has either stopped responding or it has become almost part of the DNA

 

There is some great info on testing and how Lyme hides in our bodies, etc. in the book Cure: Unknown. I checked it out from our library and was very pleased w/how it was written. You don't have to know much about Lyme (I knew nothing when I read it) and you don't have to have a medical degree to understand it.

[HT's Mom]

Thank you to all who responded. It is such a complicated issue. I feel for those of you who have kids who have or who have suffered yourselves with Lyme or trying to determine what the tests are actually indicating and finding doctors willing to do something. I'm almost afraid to go down the path and get ambiguous results. There is nothing I can point to as far as symptoms in ds16, he seems like classic pandas. But DH is adamant about testing for lyme. He jumps on anything I mention as a possibility or as something mentioned on this forum. I almost have to filter things to decide what to bring up to him. We have certainly had tics pulled off the kids and dog over the years, but I have never seen a rash, but nothing but PANDAS symptoms.

 

Meanwhile, good news, I got an email from ds's english teacher saying he seems more himself and focused - this being ten days out from finishing prednisone burst and a month before IVIG. His ticking seems much better, depression lifted. This is a good sign, right? We are on the right course if steroid is diagnostic for PANDAS?

 

I think I will order the basic Igenex test to see what it indicates and then go from there. Thank you!

[LNN]

My DS responded amazingly well to 2 month-long prednisone tapers, which I always felt meant he didn't have lyme. This wasn't the case. I would not use the prednisone response as a rule-out for a TBI. But I would do your best to enjoy the good place he's in! Best of luck with testing and with your fight for sustained good times!

[NancyD]

My DD also responded well to a month-long taper last summer so I agree...don't assume it's not TBI.

 

My DS responded amazingly well to 2 month-long prednisone tapers, which I always felt meant he didn't have lyme. This wasn't the case. I would not use the prednisone response as a rule-out for a TBI. But I would do your best to enjoy the good place he's in! Best of luck with testing and with your fight for sustained good times!

[mama2alex]

what do I order to do a basic ruling out of lyme- there are numerous tests on their website. Are all the co-infections or tic borne diseases necessary too or only if Western Blot/primary test is positive? If there is a thread to simplify this, I'd appreciate the link.

 

Thanks!

 

For Borrelia (Lyme), you could start with the IgM and IgG Western Blots (#s 188 and 189). That's $200. Each co-infection antibody test (IgM and IgG) is $135 each, so it would be pricey to do all to start. We tested all in the beginning and Lyme test was neg, but Bartonella was positive. Bartonella shares a lot of symptoms with PANDAS, so you might want to do that one right off the bat (Bartonella henselae IgG & IgM Antibody, #285), then see what comes back and have an LLMD interp ret. Or if you feel you can afford it, you could just do them all and get it out of the way.

 

Here's a link to symptom lists for each co-infection - it was just posted by a mom over on the Lyme forum:

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=313

 

Also, the Book "Cure Unknown," chapter 27 discusses various co-infections in some detail. You can find the book at most libraries.

[GraceUnderPressure]

I am not sure why the PANDAS network has that, but it could be related to a NYT article in 2005 that smeared Igenex & lead to an investigation by a federal inspector - who cleared them of the allegations. Here are a couple of links that give a synopsis of what happened -

http://members.iconn.net/~marlae/lyme/headlinestory02.htm

http://members.iconn.net/~marlae/lyme/articles/2005/Igenex%20passes%20two%20inspections.htm

There are still a number of people out there posting about the smear as if it were fact and unaware (to give them the benefit of the doubt) that Igenex was exonerated so it's quite possible that's it ended up being picked up from one of those sites by the PANDAS network.

 

After doing a little research & then talking to our PANDAS dr, we ended up doing the full Lyme panel (around $400) because though the Western Blot is considered the most reliable at this point, relatively speaking, we were also worried about ambiguous results & wanted to get as definitive a positive or negative as is available at this point.

 

I will also second (or I guess third?) the recommendation to read "Cure Unknown" for the details. I actually wasn't much inclined to read it, but our library turned out to have it so I went ahead & borrowed it. I ended up not being able to put it down & stayed up till 3 in the morning reading!

 

(BTW, interesting WaPo article that turned up on author Amy Tan relating to the Lyme controversy in case anyone's interested -

http://www.igenex.com/tickedoff.htm)

[EAMom]

I will also second (or I guess third?) the recommendation to read "Cure Unknown" for the details. I actually wasn't much inclined to read it, but our library turned out to have it so I went ahead & borrowed it. I ended up not being able to put it down & stayed up till 3 in the morning reading!

 

 

I also ditto this recommendation. I also found the book at the library. We haven't pursued Lyme (no tick history) but the book was a really great read. This is a good topic to have some knowledge on so you can make a better decision as to if Lyme testing is a appropriate for you family. Also, the politics involved in the Lyme debate is stunning (even worse than PANDAS....makes you thankful that PANDAS docs aren't losing their licenses for rxing antibiotics).

 

I do feel like neither the CDC approved western blot (too many false negatives) or Igenex (possibility of false positives depending on who is reading the test) is ideal. I suppose it's a lot like a PANDAS diagnosis, where you have to look at tests (titers) with a grain of salt and really take into account history, exposure, symptoms, response to therapy....and sometimes even then, a good doctor can be wrong one way or the other.

 

PS the Amy Tan article was great.

Edited April 22, 2011 by EAMom

[Worried_Dad]

I am specifically not opening up the debate again - After reading the five pages of posts on Lyme testing or not, I fall on the side of ruling anything and everything out, more information is better than less. So, in looking around to figure out what tests to order from Igenex, I saw this on the pandasnetwork.org site:

 

"Lyme Disease – Traditional Western Blot should be done for those in lyme regions of the world. Lyme is a controversial illness and testing and treatment is expensive. Some parents and doctors do an experimental/non-medically validated IGENEX lyme test that shows antibodies that MAY be present. We do not recommend this test. "

 

Does anyone know why they specifically say they don't recommend Igenex? And why is Igenex not medically validated?

 

Assuming I ignore that and go with all you parents who have tested there, what do I order to do a basic ruling out of lyme- there are numerous tests on their website. Are all the co-infections or tic borne diseases necessary too or only if Western Blot/primary test is positive? If there is a thread to simplify this, I'd appreciate the link.

 

Thanks!

 

The woman who runs the PANDAS Network web site (Diana P) was one of my family's "forum saviors" in the early days here, when my wife and I were completely overwhelmed by what was happening to our ds. From what I see on the site, she's basing this guidance on the opinions of Dr. Rosario Trifiletti of PANDAS fame, who used to be a member of this forum as well. Here's the link on the web site to his specific comments on this topic:

 

http://pandasnetwork.org/wp-content/uploads/2010/09/Lyme-testing-remarks.pdf

 

The way I read this, he does encourage Lyme testing in endemic areas and does this routinely for his patients, but he favors the standard CDC Lyme Western Blot. He doesn't say that IGeneX is invalid, just that it's so sensitive that (in his opinion) it generates too many false positives. Based on his own patient stats (200+ PANDAS patients), he's found that symptoms and the clinical picture are more valuable for distinguishing Lyme from PANDAS than the tests are.

 

Dr. T was a valuable contributor on this forum for a time, and you may still come across some of his old posts in the Pinned Topics area. Here's some more info on him and his practice:

 

http://www.site.neurokidsr.us/Staff.html

 

Dr. T always seemed reasonable, open to competing points of view, and eager to pursue new lines of diagnosis / treatment for all of these PITAND kids (the broader category that can encompass PANDAS, Lyme, and other stuff in between!). I don't think he intended to dismiss the importance of pursuing Lyme testing, just emphasized that they (like the PANDAS tests) are not that reliable at this stage of the game.

 

And here's another plug for "Cure Unknown": haunting, poignant story of how utterly narrow-minded and political our healthcare system can be, especially in embracing new diseases. It shocked me and resonated (painfully) with our parallel experience seeking local treatment for PANDAS!

[T_Mom]

Oh My, WD--Very interesting find in the link to Dr T's observation re: p41. WOW! That is what our d had positive too-- and we are not one of the families that were "counted" in his observations, as we have never seen him--I can't help but wonder if many of our kids have p41 positive, as he seems to indicate, and so what IS that?

 

"Note from Neurologist, Dr. Rosario Trifiletti regarding traditional Western Blot test for Lyme versus experimental IGENEX test for Lyme. (2010)

Probably <1% of children with PANDAS/PITANDS have a positive Lyme Western blot by CDC criteria.

I say this with confidence because I have tested a lot of kids from the NY-NJ-PA-CT area where Lyme is endemic I routinely check all new patients - I have over 200 PANDAS patients now in which this was checked, and found a TRUE positive Western blot in only one. There were a small number of patients who show two positive IgM bands (which would be strictly CDC positive) but I elected to do a follow-up test in a month, which was uniformly (100%) negative in follow-up.

In contrast, 80-90% of patients (haven't recalculated data for a while) are positive for p41 (flagellin) on IgG and/or IgM. I think this may be telling us that a presently unidentified flagellated bacterium (or several bacteria) which is NOT B.Burgerdorfi is a strong PANDAS trigger. My goal is to find out what that trigger is ....

I'll be presenting the above in October at the 2010 Child Neurology Society meeting in Providence, RI."

 

Wow again! and thank you Dr T.!

[kimballot]

Oh My, WD--Very interesting find in the link to Dr T's observation re: p41. WOW! That is what our d had positive too-- and we are not one of the families that were "counted" in his observations, as we have never seen him--I can't help but wonder if many of our kids have p41 positive, as he seems to indicate, and so what IS that?

 

"Note from Neurologist, Dr. Rosario Trifiletti regarding traditional Western Blot test for Lyme versus experimental IGENEX test for Lyme. (2010)

Probably <1% of children with PANDAS/PITANDS have a positive Lyme Western blot by CDC criteria.

I say this with confidence because I have tested a lot of kids from the NY-NJ-PA-CT area where Lyme is endemic I routinely check all new patients - I have over 200 PANDAS patients now in which this was checked, and found a TRUE positive Western blot in only one. There were a small number of patients who show two positive IgM bands (which would be strictly CDC positive) but I elected to do a follow-up test in a month, which was uniformly (100%) negative in follow-up.

In contrast, 80-90% of patients (haven't recalculated data for a while) are positive for p41 (flagellin) on IgG and/or IgM. I think this may be telling us that a presently unidentified flagellated bacterium (or several bacteria) which is NOT B.Burgerdorfi is a strong PANDAS trigger. My goal is to find out what that trigger is ....

I'll be presenting the above in October at the 2010 Child Neurology Society meeting in Providence, RI."

 

Wow again! and thank you Dr T.!

 

WD and T Mom - Thanks for finding this! I did not realize Dr. T had presented this information. I found a summary of the presentation here - on pages 64 and 65 http://www.childneurologysociety.org/assets/annual_meeting/2010/CNS_Program_Bklt_2010.pdf