Regarding Lyme info in different topic headings:

[philamom]

Both of my kids are going to have Igenex testing (Comprehensive lyme panel and co-infections.) I have antibiotic prescriptions for both kids, but I called Igenex today and was told to have the lyme testing prior to starting the antibiotics. This is the same advice I had received previously from an informed parent. One of my kids is also on Plaquenil, and the employee at Igenex told me to have her stop the Plaquenil for 14 days prior to testing as well. I'm going to comply with this, as I figure the purer the test, the better. (But it is killing me to have these abx prescriptions in hand and not be able to start them yet!)

Pam

 

The test you are ordering has the PCR Panel which requires you to be off of antibiotics. The Basic Western Blot does not. So it's best to comply to get the most accurate picture. Hang in there.

[lyme_mom]

I am not sure if my son was tested by the IgeneX lab. However, my son did his Lyme testing thru Dr. Brian Fallon at Columbia University. My understanding is that Dr. Fallon is one of the best Lyme doctors out there. All of my son's Lyme tests came back negative.

 

I'm not sure it this accurate (hopefully someone with more knowledge will chime in) but I thought if you had a persistent/chronic Lyme infection it could be negative one month, positive the next...so forth. That's why some LLD will treat on symptoms alone and re-test to see if it then shows a response? I could be wrong.

Yes this is true because it can take a while for a coinfection to show up in a test. You may never get a positive coinfection test result but you can still have a coinfection. Just like with lyme there are so many varieties of coinfections. WIth Babesia, for example, there are at least 13 types and they only test for two types. So you get the idea. There are also multiple types of Bartonella and that is why Dr. Jones uses several labs and still doesn't rely on a negative result. What matters more than a test result is an evaluation by a lyme literate doctor. The llmds I know will tell you that a negative coinfection test does not mean you are not sick with babesia or bartonella, for example. My kids always tested negative for coinfections but that didn't mean anything. They had symptoms of coinfections and those symptoms cleared up after they were treated for the coinfections. This was hard for me to grasp when we first started our lyme treatment but I have learned that it is typical of most lyme cases now: most people have multiple tick-borne illnesses, not just lyme. The ticks are carrying more and more bugs.

[philamom]

I am not sure if my son was tested by the IgeneX lab. However, my son did his Lyme testing thru Dr. Brian Fallon at Columbia University. My understanding is that Dr. Fallon is one of the best Lyme doctors out there. All of my son's Lyme tests came back negative.

 

I'm not sure it this accurate (hopefully someone with more knowledge will chime in) but I thought if you had a persistent/chronic Lyme infection it could be negative one month, positive the next...so forth. That's why some LLD will treat on symptoms alone and re-test to see if it then shows a response? I could be wrong.

Yes this is true because it can take a while for a coinfection to show up in a test. You may never get a positive coinfection test result but you can still have a coinfection. Just like with lyme there are so many varieties of coinfections. WIth Babesia, for example, there are at least 13 types and they only test for two types. So you get the idea. There are also multiple types of Bartonella and that is why Dr. Jones uses several labs and still doesn't rely on a negative result. What matters more than a test result is an evaluation by a lyme literate doctor. The llmds I know will tell you that a negative coinfection test does not mean you are not sick with babesia or bartonella, for example. My kids always tested negative for coinfections but that didn't mean anything. They had symptoms of coinfections and those symptoms cleared up after they were treated for the coinfections. This was hard for me to grasp when we first started our lyme treatment but I have learned that it is typical of most lyme cases now: most people have multiple tick-borne illnesses, not just lyme. The ticks are carrying more and more bugs.

 

Please don't take this the wrong way...but then why test for co-infections if you're going to treat anyhow? Just curious.

[Priscilla]

So my 8 yr old is being treated for PANDAS. She did have elevated strep ABO and almost textbook PANDAS symptoms. We just had 1st dose of IVIG this past Sat. I see improvement in some areas, not so much in others. I am going to give IVIG a little more time, but if I want to start testing for LYME's to rule that out, where can I get the Igenex western blot test? Does this have to be done at DR. I am in CA, anyone know of help here?

[lyme_mom]

I am not sure if my son was tested by the IgeneX lab. However, my son did his Lyme testing thru Dr. Brian Fallon at Columbia University. My understanding is that Dr. Fallon is one of the best Lyme doctors out there. All of my son's Lyme tests came back negative.

 

I'm not sure it this accurate (hopefully someone with more knowledge will chime in) but I thought if you had a persistent/chronic Lyme infection it could be negative one month, positive the next...so forth. That's why some LLD will treat on symptoms alone and re-test to see if it then shows a response? I could be wrong.

Yes this is true because it can take a while for a coinfection to show up in a test. You may never get a positive coinfection test result but you can still have a coinfection. Just like with lyme there are so many varieties of coinfections. WIth Babesia, for example, there are at least 13 types and they only test for two types. So you get the idea. There are also multiple types of Bartonella and that is why Dr. Jones uses several labs and still doesn't rely on a negative result. What matters more than a test result is an evaluation by a lyme literate doctor. The llmds I know will tell you that a negative coinfection test does not mean you are not sick with babesia or bartonella, for example. My kids always tested negative for coinfections but that didn't mean anything. They had symptoms of coinfections and those symptoms cleared up after they were treated for the coinfections. This was hard for me to grasp when we first started our lyme treatment but I have learned that it is typical of most lyme cases now: most people have multiple tick-borne illnesses, not just lyme. The ticks are carrying more and more bugs.

You dont need to test actually because they will treat the symptoms. However every doctor is different. We have two excellent llmds and one is Dr. jones who likes to test and retesteveey four to six months. Our other llmd does not bother doing a lot of testing for confections. Both doctors treat the symptoms not the test result becauss the tests are not reliable. Testing gets expensive so any parent can tell their Lyme doctor that they want to avoid a lot of expense and treat based on symptoms.

Please don't take this the wrong way...but then why test for co-infections if you're going to treat anyhow? Just curious.

[philamom]

Thanks lyme mom!

[lyme_mom]

Thanks lyme mom!

I am happy to share what I know!