Lyme Testing

[JTs-Mom]

I posted on the TS side, and Faith suggested I try over here also.

 

My ds had a deer tick bite in 5/08. I didn't recognize it as a tick (had never seen one before... thought it was a tiny blood blister.) It was removed after 4 days and he did have a small red spot at the bite site one week later. His tics started in 11/08. I did take him to the pediatrician at the time and she prescribed Keflex. I just recently read that Keflex is ineffective for Lyme, so I am getting nervous about it. My ds only has tics, no OCD or any other major behavioral issues, so I don't know if that fits for Lyme.

 

I ordered a Lyme test kit from igenex.com, and I was planning to just get the IGG and IGM Western Blot, but the "Complete Lyme Panels" also includes Lyme IGG/IGM/IGA IFA Screen and Lyme Multiplex PCR Serum & Whole Blood. The Western Blots are $200. All of these tests combined cost $475. Can anyone tell me if the IFA and PCR are really worth it/necessary? Most of what I've read online with regard to Lyme testing references the western blot. Are the western blots reliable enough or should I really get the additional tests (IFA & PCR)?

 

Any feedback would be appreciated (especially from Lyme Mom). Thanks!

[Fixit]

I posted on the TS side, and Faith suggested I try over here also.

 

My ds had a deer tick bite in 5/08. I didn't recognize it as a tick (had never seen one before... thought it was a tiny blood blister.) It was removed after 4 days and he did have a small red spot at the bite site one week later. His tics started in 11/08. I did take him to the pediatrician at the time and she prescribed Keflex. I just recently read that Keflex is ineffective for Lyme, so I am getting nervous about it. My ds only has tics, no OCD or any other major behavioral issues, so I don't know if that fits for Lyme.

 

I ordered a Lyme test kit from igenex.com, and I was planning to just get the IGG and IGM Western Blot, but the "Complete Lyme Panels" also includes Lyme IGG/IGM/IGA IFA Screen and Lyme Multiplex PCR Serum & Whole Blood. The Western Blots are $200. All of these tests combined cost $475. Can anyone tell me if the IFA and PCR are really worth it/necessary? Most of what I've read online with regard to Lyme testing references the western blot. Are the western blots reliable enough or should I really get the additional tests (IFA & PCR)?

 

Any feedback would be appreciated (especially from Lyme Mom). Thanks!

 

 

I am interested in anyone's response as well....

Will dr K look into this if am having a phone consult in 2weeks? Should i just wait for him or should go for one of these tests.

We have also lived in PA for several years and i have found tics on him.. I think deer are the state animal!!!!

[MichaelTampa]

All good questions. I have a lot of respect for Dr. K., just starting on his recommended treatment plan. But, I would say, I'd be surprised if he was a pediatrician and a PANDAS expert AND a lyme expert. It's only so much a person can know about. Sounds like PANDAS and lyme are both situations where you really want an expert to deal with the situation. JT's mom, I'm getting some lyme tests on Monday, I chose the tests based on getting a basic panel plus an individual one related to the specific symptoms that match me (bartonella), and rickettsia (because an old biofeedback test showed sensitivity). I know it's tough to figure out how far to go when there are so many tests with real cost. lyme mom posted an excellent pdf in a different thread, and that pdf describes lyme symptoms, diagnosis, testing, treatment, and so on, including all the different related coinfections and what they can look like symptomwise. You might find it helpful in selecting what tests to do.

 

Michael

[lyme_mom]

All good questions. I have a lot of respect for Dr. K., just starting on his recommended treatment plan. But, I would say, I'd be surprised if he was a pediatrician and a PANDAS expert AND a lyme expert. It's only so much a person can know about. Sounds like PANDAS and lyme are both situations where you really want an expert to deal with the situation. JT's mom, I'm getting some lyme tests on Monday, I chose the tests based on getting a basic panel plus an individual one related to the specific symptoms that match me (bartonella), and rickettsia (because an old biofeedback test showed sensitivity). I know it's tough to figure out how far to go when there are so many tests with real cost. lyme mom posted an excellent pdf in a different thread, and that pdf describes lyme symptoms, diagnosis, testing, treatment, and so on, including all the different related coinfections and what they can look like symptomwise. You might find it helpful in selecting what tests to do.

 

Michael

 

Michael,

 

Good point about the doctors not specializing in everything. I would think that the Pandas doctors would need to be sure that they are not missing lyme b/c it is such an epidemic. My lyme MD in DC treats both lyme and pandas. He and his assistant, a naturopath, also treat children with autism and other complicated health problems. He said that a lot of the kids with pandas also have lyme and they treat them for both infections simultaneously (bicillin shots once a month and the lyme antibiotics).

 

He said that taking antibiotics will not affect the lyme test. Also that energetic testing really seems to be accurate because we did it a number of times.

 

Lyme Mom

[lyme_mom]

I posted on the TS side, and Faith suggested I try over here also.

 

My ds had a deer tick bite in 5/08. I didn't recognize it as a tick (had never seen one before... thought it was a tiny blood blister.) It was removed after 4 days and he did have a small red spot at the bite site one week later. His tics started in 11/08. I did take him to the pediatrician at the time and she prescribed Keflex. I just recently read that Keflex is ineffective for Lyme, so I am getting nervous about it. My ds only has tics, no OCD or any other major behavioral issues, so I don't know if that fits for Lyme.

 

I ordered a Lyme test kit from igenex.com, and I was planning to just get the IGG and IGM Western Blot, but the "Complete Lyme Panels" also includes Lyme IGG/IGM/IGA IFA Screen and Lyme Multiplex PCR Serum & Whole Blood. The Western Blots are $200. All of these tests combined cost $475. Can anyone tell me if the IFA and PCR are really worth it/necessary? Most of what I've read online with regard to Lyme testing references the western blot. Are the western blots reliable enough or should I really get the additional tests (IFA & PCR)?

 

Any feedback would be appreciated (especially from Lyme Mom). Thanks!

 

 

I am interested in anyone's response as well....

Will dr K look into this if am having a phone consult in 2weeks? Should i just wait for him or should go for one of these tests.

We have also lived in PA for several years and i have found tics on him.. I think deer are the state animal!!!!

 

Hi Fixit,

 

My family just got the igenex igg and igm tests and did not do the rest of the lyme panel. We saw evidence of Lyme with igg and igm tests so there was no need to do the full package. Also there is a follow up test that you can run if your Western blot comes back with any equivocal bands. This means that something is there but it isn't exactly positive (it isn't exactly negative either). This borderline result can be run through the computer again (for a fee) and compared to their database of positives. From this they can tell if you are band 31 positive. Not sure exactly how it works. They did this for me b/c my test was actually negative but I had "indeterminate" bands. The followup test was positive. A few weeks later I started to get symptoms so I think I was tested too early. It is great that you are doing the Igenex test! I think that is extremely wise to do that so you know what you are dealing with. You can always add those other tests if you need to. Good luck!