Has anyone tested negative on IGNEX?

[kimballot]

We've been hearing from lots of folks who's kids have been diagnosed with PANDAS, tested in the PANDAS range on Cunningham test, tested negative (or positive ) on Western Blot, and then tested positive with IGENEX testing.

 

I am wondering if any PANDAS kids have tested negative on IGENEX. Would this be worth running a survey on?

[philamom]

We've been hearing from lots of folks who's kids have been diagnosed with PANDAS, tested in the PANDAS range on Cunningham test, tested negative (or positive ) on Western Blot, and then tested positive with IGENEX testing.

 

I am wondering if any PANDAS kids have tested negative on IGENEX. Would this be worth running a survey on?

 

My daughter tested positive for Lyme but negative on all co-infections, so far, thru IgeneX.

[PacificMama]

Good question. I'm not here all the time, but I don't remember anyone posting that their Igenex (specifically Igenex) was negative. Just perhaps a post or two on confusion over only band 41 positive. It's worth asking, though.

 

My wish would be that Dr. Cunningham would include the Igenex panel in her workup... that would be incredibly valuable data.

[sptcmom]

Just a related thought/info

I remember reading here that Band 41 is a double star band for Igenex. So if band 41 is positive on Quest western blot testing then it was probably a false negative ruling for Lyme with Quest.

I spoke to Dr Jones the lyme doc yesterday and he said that only Band 41being positive was of no significance. I am confused.

I am going ahead and doing the Igenex testing anyways.

Its curious why hardly anyone has come up negative on Igenex testing

Sometimes conspiracy theories swirl in my head for no reason LOL!

[colleenrn]

One of my children tested postive for band 41 on the western blot done through Quest Lab. Does this mean I should have him retested through Igenex?? We live in a Lyme area- several neighbors have been diagnosed in the past 2 years.

Colleen

Edited August 4, 2010 by colleenrn

[PacificMama]

By the time people go ahead with Igenex test, it's because they have reached a place where they are highly suspicious of lyme -- and thus the positive test. Including lots of posters on this board. Of course there are negative igenex test results out there -- but again you are not likely to find them on this board because the people who do go ahead and test probably are dealing with lyme. Regarding conspiracy, I don't think Igenex has anything to gain by handing out false-positives -- it's not like they are selling the drugs that cure lyme. I know you are mostly kidding, but I don't want anyone to discount the accuracy of these tests -- as they are the most sensitive testing out there.

 

At the end of the day, it's a clinical diagnosis. And what matter MOST is that after a person begins lyme treatment is DO THEY FEEL BETTER AND FIND SYMPTOM RESOLUTION? I'm sure that you will find the vast majority of "positives" would say "YES!"

 

Regarding Dr. Jones and Band 41, I'm not sure that "no significance" would accurately portray his opinion. Of course, he is quite skilled at making the clinical diagnosis in conjunction with the lab results.

 

Just a related thought/infoI remember reading here that Band 41 is a double star band for Igenex. So if band 41 is positive on Quest western blot testing then it was probably a false negative ruling for Lyme with Quest.I spoke to Dr Jones the lyme doc yesterday and he said that only Band 41being positive was of no significance. I am confused.I am going ahead and doing the Igenex testing anyways.Its curious why hardly anyone has come up negative on Igenex testingSometimes conspiracy theories swirl in my head for no reason LOL!

[PacificMama]

ColleenRN,

 

You have been posting for a while about the possibility of lyme in your kids. Yes, PLEASE get the Igenex testing done! Why?

You live in a very endemic area

You have history of tick bites on your kids

You have neighbors with lyme disease

Your kids symptoms are in line with lyme

 

There are some good lyme doctors in your area... please pursue an evaluation with one of them so you can get the proper treatment if indeed lyme is the culprit. Remember, your kids can still test positive and be reactive to strep -- and still have lyme as the root cause of dysfunction.

 

Regards,

Mary

 

One of my children tested postive for band 41 on the western blot done through Quest Lab. Does this mean I should have him retested through Igenex?? We live in a Lyme area- several neighbors have been diagnosed in the past 2 years.Colleen

[lyme_mom]

Just a related thought/info

I remember reading here that Band 41 is a double star band for Igenex. So if band 41 is positive on Quest western blot testing then it was probably a false negative ruling for Lyme with Quest.

I spoke to Dr Jones the lyme doc yesterday and he said that only Band 41being positive was of no significance. I am confused.

I am going ahead and doing the Igenex testing anyways.

Its curious why hardly anyone has come up negative on Igenex testing

Sometimes conspiracy theories swirl in my head for no reason LOL!

 

The lyme doctors would like to see a lyme-specific band in addition to band 41 and most lyme doctors would not rely on a Quest lyme test b/c it does not test for all known antibodies to Lyme Disease, including the two most important markers for Lyme: bands 31 and 34. They do not test for these bands b/c we were all supposed to be exposed to these bands after receiving the Lyme vaccine. The vaccine was pulled off the market 15 years ago but they never went back and fixed the tests to include these important markers. Pacificmama wrote a very interesting post six months ago about the meaning of a positive band 41 and how very suspicious it is for lyme b/c most people do not have syphilis these days. Those of us who keep posting about Lyme would not be surprised to learn that most of the PANDAS kids test positive for Lyme because the "PANDAS" symptoms fit Lyme and/or Bartonella and Babesia too. I believe they will change the name "PANDAS" some day when they figure out that tick-borne illnesses or other infections besides strep are at the bottom of these cases now called 'PANDAS". This acronym leads many parents on this board to believe that they have arrived at the only diagnosis for their child and therefore they do not get a lyme evaluation by a lyme expert and waste precious time and money on the PANDAS treatment including IVIG which will not help much if lyme is involved and is not being properly treated. I believe that every child who exhibits PANDAS symptoms should be tested by Igenex AND evaluated by a lyme literate doctor. You need all the information up front when you start treatment so that you can get the correct treatment for your child. I have been asked the same question about whether anyone ever comes up negative on the Igenex testing. Its an epidemic that is getting worse everyday. As Mary said, for someone with serious symptoms the odds are very high that the igenex test will be positive. One word of caution to those getting igenex testing done. A lyme literate doctor needs to evaluate the results. If there is even one lyme-specific antibody on the result it indicates exposure to lyme. This coupled with symptoms is enough reason to treat for lyme. I know quite a few whose igenex tests were "negative" (for the cdc criteria and the igenex), including mine, but who had one or more lyme-specific antibodies. In my case I was tested a little too early and I had indeterminate bands for 31 and 34. This means something was there but it wasn't enough to elicit a positive result. Where there is smoke there is fire. I later tested positive after treatment but I didn't need that to tell me I had lyme. I knew this once I started treatment and felt better. A lyme doctor would interpret an igenex test that has even one lyme specific antibody as positive or as justification to treat the patient as long as a person has lyme symptoms. After treatment all those I know with borderline igenex results got well and many later retested very positive through igenex after treatment.

[Kayanne]

I just wanted to answer your question: "How may kids with PANDAS have Lyme?"

 

I don't think my daughter has lyme...we have not done any lyme testing for the following reasons:

 

1. Her symptoms were abrupt, over a 2-week period following confirmed strep that took 4 rounds of antibiotics to clear.

 

2. She has gotten better with the use of month-long prednisone. Better meaning 98%-99% by the end of treatment and shedding the other 2% within 2 months of treatment. Thankfully, we are not dealing with a chronic issue. (although I don't think if PANDAS has been chronic for your children it means lyme too...I just think that if your children aren't responding to PANDAS treatments then Lyme should be looked at)

[MichaelTampa]

I want to echo lyme mom's thought about anyone with PANDAS symptoms getting an IGenex western blot AND evaluated by a lyme doctor. A negative on IGenex western blot is not a certainty you are clear from lyme, which is why it is great to give a real doctor a chance to look at the situation. You can have both PANDAS and lyme. Even when you see the clear correlation to strep in the symptoms, so you feel confident you have PANDAS. There is too much correlation, lyme could still be around, even behind it all, and it just gets worse if not treated. It can lead to a disability-financial-health crisis that can be very difficult to recover from. As someone who struggled health-wise and social-wise, and finally got treated at age 42, I just can't stress enough, giving it a look can save so many years of torture.

 

To answer the survey-related question, my IGenex western blot result was positive band 41 (igg and igm) and indeterminate band 39 (igg and igm). Band

 

By the way, for any adults out there, LabCorp's CD57 ("HNK1") test is another worthwhile test. It is generally covered by insurance, and I think for most with insurance, they'll likely pay $5-$10 or maybe $15 for it, when all is said and done. I have heard it is not useful for children, don't know why, since I'm an adult I didn't study that point too hard.

 

Michael

[JAG10]

AHHHHH!!!

 

There are so many Lyme posts on here lately I'm starting to see green!!

 

Ok, a few practical questions:

• If your child has recently had IVIG, how many weeks do you need to wait for accurate Lyme testing?
• Has ANY PANDAS CHILD tested NEGATIVE for BAND 41?????????
• You need a doctor to order the tests from Igenex, yes? The basic #6050??? If you seek out and find a Lyme specialist, get any initial consult and then pony up the money for the testing, it's gonna add up to more than $200-400 I would think.
• Is the Lyme community doing anything to get those band 31 and 34 added back into the Western Blot provided by other labs?

My dd10 has been neuro-sick/symptomatic 8 years; other than that very healthy, no joint/aches/pains/rashes/headaches/dizziness, ect. I pulled a tick off her in 2006 (no rash), but sent the little bugger to Igenex at the time and it was negative for Lyme. We live in PA and the past few years in an area that we have deer walking through our yard on a regular basis. She had IVIG 10 weeks ago and is doing FANTASTIC, not totally symptom free, but markedly improved from any other point in her life. Some slight immaturity and learning "holes" remain, but even those two issues have improved greatly over the past 10 weeks. Healing takes time.

 

She did test positive for band 41.

 

The problem I'm having with Lyme symptomology is that is sooo broad! It's like trying to get through the DSM IV without tripping one single trigger; it can't be done!

 

I will do anything to get and keep my girl healthy, happy and age appropriate. I think I'm going to wait to see how she progresses to the 6 month mark and then ask myself "Jill, do you still have that gut instinct that says something still isn't right?" And if the answer is yes, then I know I have good cyber-friends in the area who can help me travel the Lyme path.

[dcmom]

Jill- I am with you!

 

When we started this pandas path over a year ago (no one on the forum was really talking about lyme)- my girls had an abrupt onset following a strep episode. We immediately were diagnosed with pandas, and they have been very responsive to pandas protocols. They are both doing really well now, although do have minor ocd/mood flares when exposed to strep.

 

I do think it is a good idea to be tested for lyme when starting down this path- as for many it may be lyme, or lyme may be the underlying infection that is causing the pandas to be chronic. I would certainly suggest this to a new parent, especially one without a clear onset or a correlation to strep.

 

That being said- the financial aspect is rough. To need to do a cunningham test, igenex test, go out of state and see expensive docs- and for many families for more than one child- ugh! And many parents finally make it here after years of expensive therapy and doctor's appts.

 

If my girls cannot maintain their "health"- I will be at Dr Jones doorstep immediately.

 

I do have a lyme question: We are moving to NJ, and area where there are deer and lyme is prevalent. I do plan to deer fence the small yard- keep the grass short, etc. Any other thoughts from those who have been down this road- as to how to prevent- or detect- future exposures? We will be getting a dog also....

 

Thanks!

[sf_mom]

It is about $200... $400 to test for Lyme only via Igenex. If you do the co-infection panel it would be more. I think your perspective is good. If at the 6 month mark she is still struggling and its looking like another IVIG is require to push her to 100%. I would definitely invest in the tests prior to additional treatment..... WITH CO-INFECTION PANEL. Again, my friend's son's ASO, Anti-DNase-B and TICS all resolved after first hdIVIG. By the time he needed a 3rd hdIVIG we realized something else must be at play (thanks to Elizabeth). He came back negative for Lyme but positive for Bartonella and Ehrlichia. AND will most likely turn positive for Lyme once he is further into treatment.

 

I actually now feel the Lyme testing is more critical than CaM Kinase II.

 

-Wendy

Edited August 4, 2010 by SF Mom

[sf_mom]

Deet for the kids when playing outside and spraying yard for tics. Others might chime in with more.

[PhillyPA]

I am going to repeat my post that I put on a different Lyme post. My son was tested for Lyme by Dr. Brian Fallon at Columbia University. He is an internationally known Lyme expert. My PANDAS son tested negative on all Lyme and tick borne illnesses. This also includes negative on band 41. My understanding is that if Dr. Fallon says you don't have Lyme - you don't have Lyme.