Jump to content
ACN Latitudes Forums

Recommended Posts

Hi all.

 

I was active on the PANDAS board for a while, and then decided to try Lyme testing. Got the results pretty recently and my DS9 has IGM of 58+; 31 IND; 41 IND. His IGG is 41++ and 58+.

 

Igenex says this is negative but they nevertheless recommends retesting in 4-6 weeks or with another method.

 

But, they won't tell me what the other method might be. It has actually been more than 6 weeks since the blood was drawn, so I could redo the same test if need be.

 

So....any thoughts? Do these numbers seem suspicious? We just did the Initial Lyme Panel, without the PCR, since he was on abx at the time. He is not on abx right now, so I could re-order the initial panel, or the complete one, or....?

 

Thanks for any advice.

Link to post
Share on other sites

There is a couple ways to go about retesting....

 

What we did with our son was put him on a 'lyme like' antibiotic protocol of Azithromycin and Alinia (cyst buster) collected urine on day 3, 5 and 7 after starting. We then shipped urine off to be tested for DNA of the BB. Lyme loves the bladder and is sometimes easy to shed into urine with right provocation.

 

You can have your Dr. call Igenex and have them run the 30-31 KDA CONFIRMATION http://igenex.com/Website/# on existing blood at lab. Unfortunately, test can be false negative but a positive will confirm presence of BB.

 

You can also do provocation. To do that you would need to put your son a protocol of Azithromycin/Omnicef/Alinia all size appropriate dosages or similar for three weeks and then retest.

 

However, with all of that said your son's results are suspicious enough that a good LLMD would help you to sort it all out and provide additional testing. Also a good Dr. might be able to more effectively target testing. i.e co-infections, etc.

 

With our older son they found the DNA in urine which is 98% accurate when positive. With my younger son, he showed positive for two co-infections but not positive for Lyme.

 

Hope that helps. Wendy

Edited by SF Mom
Link to post
Share on other sites

Hi all.

 

I was active on the PANDAS board for a while, and then decided to try Lyme testing. Got the results pretty recently and my DS9 has IGM of 58+; 31 IND; 41 IND. His IGG is 41++ and 58+.

 

Igenex says this is negative but they nevertheless recommends retesting in 4-6 weeks or with another method.

 

But, they won't tell me what the other method might be. It has actually been more than 6 weeks since the blood was drawn, so I could redo the same test if need be.

 

So....any thoughts? Do these numbers seem suspicious? We just did the Initial Lyme Panel, without the PCR, since he was on abx at the time. He is not on abx right now, so I could re-order the initial panel, or the complete one, or....?

 

Thanks for any advice.

I would suggest you see an LLMD. Based on symptoms they might just be able to diagnose without a positive test result. That is what our LLMD is doing for us. My son finally got a positive through Labcorp, but my daughter has "nothing to show" for her emotional troubles... no elevated ASO, zilch on the Western Blot, all labs normal. Nevertheless, based on history (she's had tic bites) and symptoms, he is treating her for Lyme/PANDAS.

I guess it depends a bit on finances. I was worried I would spend so much on testing I wouldn't be able to afford treatment! If resources are limited, just concentrate on finding a good doctor to work with. Whether it's PANDAS or Lymes, or PANDAS and Lyme, a good LLMD will be familiar with PANDAS and the antibiotics usually target both, so you really have nothing to loose by going down that path.

Link to post
Share on other sites

Thank you so much.

 

Is there a good resource for the provocation testing that I can take to our regular ped? I'm with an HMO, so all LLMD visits will be non-insured, but our pediatrician is pretty open to working with us to get evidence, etc. That's why I was thinking the testing first, and then going to an LLMD if the tests were more conclusive. No rash, no confirmed tick bite (but his dad and I have both been bitten by tics during vacation activities, so it is likely he was bitten but we didn't find it. His main symptoms are tics -- no pun intended).

 

But I will put the calls out to schedule an LLMD appt -- I know how long these things can take and I'd like to be on their lists.

 

Thanks again.

 

 

There is a couple ways to go about retesting....

 

What we did with our son was put him on a 'lyme like' antibiotic protocol of Azithromycin and Alinia (cyst buster) collected urine on day 3, 5 and 7 after starting. We then shipped urine off to be tested for DNA of the BB. Lyme loves the bladder and is sometimes easy to shed into urine with right provocation.

 

You can have your Dr. call Igenex and have them run the 30-31 KDA CONFIRMATION http://igenex.com/Website/# on existing blood at lab. Unfortunately, test can be false negative but a positive will confirm presence of BB.

 

You can also do provocation. To do that you would need to put your son a protocol of Azithromycin/Omnicef/Alinia all size appropriate dosages or similar for three weeks and then retest.

 

However, with all of that said your son's results are suspicious enough that a good LLMD would help you to sort it all out and provide additional testing. Also a good Dr. might be able to more effectively target testing. i.e co-infections, etc.

 

With our older son they found the DNA in urine which is 98% accurate when positive. With my younger son, he showed positive for two co-infections but not positive for Lyme.

 

Hope that helps. Wendy

Link to post
Share on other sites

Call Igenex. I know some of the tests/kits come with provocation instructions.

 

Again, you can always request the 30-31 KDA CONFIRMATION http://igenex.com/Website/# . They will use your son's blood being held there already. All your Dr. would need to do is call them and request the test on behalf of your son. Then they call you to charge to CC. Its maybe $125.00 to have it done. BUT, remember a negative does not rule out Lyme.

 

You might also consider running co-infection panels. These test are more expensive but would need to be done eventually if Lyme is present. Like our younger son and my girlfriend's son, borderline results for Lyme but both were positive for two co-infections.

 

-Wendy

Link to post
Share on other sites

Someone on the PANDAS forum posted about this test. I think she had it done on her child...maybe she'll chime in. It was also mentioned at a lyme support group meeting I recently attended.

 

NeuroScience (My Lyme Immune ID)

Comprehensive Lyme Assessment (#5652) includes: Immune Tolerance Test, Cytokine Analysis, Western Blot Analysis

 

www.neuroscienceinc.com/Lyme

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...