which lyme test

[PANDASmcnuggetsw/fry/coke]

Today we are planning on doing the lyme test and although Igenex reccomends the complete lyme panel (6050) it seems like some here do the basic lyme panel (4090). On the phone, Igenex said for the complete test you must be off abx for 10 days and it is ok to be on them for the basic panel. What is the benefit of doing the Complete over the Basic panel and thus having to go off ABX?

 

Thank you!!

PANDAS McNuggests w/fry/coke

[sf_mom]

I am not sure of the difference but we did the COMPLETE Lyme testing and COMPLETE co-infection panel. Unfortunately, both my kids were on antibiotics when we did blood draw.

 

-Wendy

 

 

Today we are planning on doing the lyme test and although Igenex reccomends the complete lyme panel (6050) it seems like some here do the basic lyme panel (4090). On the phone, Igenex said for the complete test you must be off abx for 10 days and it is ok to be on them for the basic panel. What is the benefit of doing the Complete over the Basic panel and thus having to go off ABX?

 

Thank you!!

PANDAS McNuggests w/fry/coke

[PANDASmcnuggetsw/fry/coke]

Wendy,

 

Do you think you got a false negative because of the ABX or did someone test positive?

 

I really am suspecting lyme b/c of my daughter's symptoms and hate to wait another 14 days (4 to finish the abx and 10 days to clear it out of her system).

 

Does Igenex interprest the results? How long do the results take?

 

Thanks!

PANDAS McNuggets w/fry/coke

 

sorry if this shows up twice. I posted earlier and did not see it! :-)

[smartyjones]

SF mom - what time is that appointment -- i'm anxious to hear about it!

[philamom]

Today we are planning on doing the lyme test and although Igenex reccomends the complete lyme panel (6050) it seems like some here do the basic lyme panel (4090). On the phone, Igenex said for the complete test you must be off abx for 10 days and it is ok to be on them for the basic panel. What is the benefit of doing the Complete over the Basic panel and thus having to go off ABX?

 

Thank you!!

PANDAS McNuggests w/fry/coke

I ran the Basic Panel and when it came back positive, I had the co-infections done on the same sample. My daughter's ped just faxed over a new slip. But, there were a couple co-infections that couldn't be done without whole blood sample. So in hindsight, I wish I would've done the Complete Lyme Panel, which includes you sending in serum and whole blood.

[PANDASmcnuggetsw/fry/coke]

Thanks Philamom~

 

I guess that is the scenario we are trying to avoid...going back for more testing. We are also doing the Cunningham test today, so I was hoping to test for lyme at the same time. But I guess it makes sense to wait on the lyme for the abx to clear and do the more complete testing, so we get the complete lyme story if there is one.

 

Does anyone know if lyme can be lying dormant and then get triggered or woken up by a vaccine?

 

Thanks,

 

PANDAS McNuggets w/fry/coke

[KeithandElizabeth]

Hello:

 

I just got back from my LLMD appointment and we discussed this topic. He believes that a person's immune system may keep lyme in "check", meaning that there would be no lyme symptoms, and that a vaccine, a cold, or an emotional trigger can bring the lyme out of check.

 

He also discussed how mycoplasma often mimics lyme disease and how many people have both mycoplasma and lyme, but that some people only have mycoplasma and that this alone can create "PANDAS" or other physical or mental symptoms.

 

Elizabeth

[PANDASmcnuggetsw/fry/coke]

Thanks Elizabeth for adressing this! My daughter also has/had mycoplasma infection, so all of this info just blows me away.

 

I cannot believe how well versed so many of the parents here on the forum are on the various science topics applicable to PANDAS. My heart goes out to those families that don't have access to this group or other helpful sources of information to help their dear children. We just got back from the blood draw for the Cunningham test and my prayer is that besides helping my daughter, it can help future generations of children from all of this suffering.

 

PANDAS McNuggets w/fry/coke

[PacificMama]

Yes, I absolutely believe that vaccines can trigger onset of symptoms. And I agree with what Elizabeth wroter about the idea that lyme may not be fully erradicated, but that a healthy immune system keeps it in check. My daughter -- from ages 2 to 4 -- was treated with abx for positive lyme. She became symptom free and we took her off abx and she was great for nearly a year. When she had her 5yo immunizations, it brought back the neuro-lyme. She was too young initially to use a cyst-buster abx, and so I believe that the lyme went dormant in cyst form, and re-emerged with immunizations. (she was then treated again with cyst-buster, along with other abx).

 

Also, many people will surely test positive for lyme exposure, but are symptom-free. Their immune system from the start is keeping it in check. However, an illness or stressful event down the road can trigger the onset of symptoms.

 

Does anyone know if lyme can be lying dormant and then get triggered or woken up by a vaccine?

 

PANDAS McNuggets w/fry/coke

Edited August 10, 2010 by PacificMama

[sf_mom]

Just spoke with Dr. H about this yesterday!!!!!! We are NOT vaccinating until we figure things out.

 

-Wendy

 

 

[

[justinekno]

I'm curious. For those who have done the IGenex test and seen their results, are they difficult to interpret? My dr's office just received the faxed results and the nurse couldn't make heads or tails out of them. She is sending me (and our PANDAS dr) the results but I'm wondering if I will even be able to figure them out! She said it looked like my son was IGenex positive (maybe igg but not sure), CDC negative but that's all she could decipher.

 

I should have them by tomorrow in the mail but it's sooo frustrating to know they have them in their hands and can't read them.

Edited August 11, 2010 by justinekno

[KeithandElizabeth]

I would take the them to a lyme literate doctor. Many lyme doctors consider a positive on any other band, other than 41, to be a possible positive even if the overall test says negative.

 

With IGENEX, you would consider either a positive IGG or IGM to be positive. My daughter was positive for IGG and not IGM and she has done amazing with the lyme treatment.

 

Elizabeth

[philamom]

I would take the them to a lyme literate doctor. Many lyme doctors consider a positive on any other band, other than 41, to be a possible positive even if the overall test says negative.

 

With IGENEX, you would consider either a positive IGG or IGM to be positive. My daughter was positive for IGG and not IGM and she has done amazing with the lyme treatment.

 

Elizabeth

 

Elizabeth-

Could you remind me what abx combo your children are currently on for the Lyme?

Thanks- Melinda

[KeithandElizabeth]

Melinda:

 

Depending on the coinfections, each doctor may prescribe differently. Both of my children started on the azithromycin/omnicef combo, which is supposed to be good for lyme and bartonella and mycoplasma. So, they were each on 250 of azith and 600 of omnicef. Our doctor also incorporates the nutramatrix herbs for lyme into his regime and homeopathy for detox. Now, my daughter is dealing with the babesia with Mepron and my son is dealing with the cyst form of lyme with Tindamax.

 

Elizabeth