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I am pulling this off a thread from the PANDAS forum. I was hoping Philamom and anyone else with info would respond here. Thanks!

 

 

I took her to an llmd who ran additional test and she was postive for Bartonella with Specialty Lab (now a division of Quest) and RMSF through Quest. Both test are covered by insurance. She also has numerous elevated Igg's of infections which she never had any symptoms of (Mycoplasma, Cytomegalovirus, C. Pneumoniae, HSV 1, Herpes 6, Epstein Barr Virus VCA & EBNA). She also has elevated LFT's & Cholesterol. These elevations are commonly seen with Lyme. My daughter has had a total of five IVIG's. We feel she is dealing with Lyme & PANDAS (or PITAND).

 

With that said, many people on here don't see results until 3 months post IVIG. But if you don't see improvements, you may want to consider additional testing.

 

Hoping you see results soon!!

 

Philamom-

 

My immunologist recommended we use specialty labs, but the llmd uses igenex... could you tell me more about specialty labs, and also about the RMSF (what is that?)... My insurance (currently) does not participate with quest, but I do have out of network coverage I could use.

 

I don't want to hijack this thread, so I am going to start another thread - on the lyme forum. Thanks!

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Here is what our daughter's llmd orders:

 

Igenex:

Western Blot IGM/IGG only

B. duncani IGM/IGG

Babesia Fish (RNA)

 

Specialty Lab (which is now owned by Quest):

Bartonella Henselae IGM/IGG

Ehrlichiosis (HME & HGE) = A. phagocytophila IGM/IGG & E. chaffeensis

 

Quest:

Rickettsia (RMSF) IGM/IGG, w/refl to titers

 

 

He only ran the Babesia & B. duncani once (she was negative) but continues to run the others every three months. She is positive for lyme and tick-borne co infection's Bartonella and Rocky Mountain Spotted Fever. I think he prefers Specialty Lab over Igenex for Bartonella because it test deeper (further dilution of titers). In looking at my results that I just got back this week for the Bartonella, the paper now says Quest on it instead of Specialty. There is a phone number and address if you would like it.

 

Now, I'm sure if he suspected Babesia in my daughter he would probably run other tests, but for right now he is mainly focusing on the Bartonella (and lyme).

 

edit: Even though Specialty is now owned by Quest, I believe it's still a different lab...so the Bart test needs to be done by Specialty. [Ok, now I'm confused lol]

Edited by philamom
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My ds was tested positive on Bartonella test via Quest lab as well and it was covered by insurance. I think the test is around $200 without insurance.

It sounds like you used the standard Quest lab. Most of the time bartonella will not show up with the standard labs because they don't test deep enough. There is a better chance with Igenex and even greater with Specialty.

 

So no second guessing your result!

Edited by philamom
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Dr jones also uses specialty lab to test for bartonella.

Yes, my daughter see's both Dr. J and Dr. B. Initially we tested negative for Bartonella with Igenex (june) but tested positive three times with Specialty (sept,jan,may). Her complete co-infection panel was negative from Igenex in June. Had I not received a positive lyme(Bb)result from Igenex at the time, I would've continued down the wrong path. She also tested positive for RMSF with Quest (sept,jan,may) which the titer has gone from 1:256 to 1:64 with treatment.

 

I'm glad to see that Dr. B is now using Specialty Lab for Bart as well!

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DS9 was borderline for Bart via Igenex (160). Can you compare that to Specialty labs? We have LLMD appt in 2 hours.

 

Thanks.

 

 

Dr jones also uses specialty lab to test for bartonella.

Yes, my daughter see's both Dr. J and Dr. B. Initially we tested negative for Bartonella with Igenex (june) but tested positive three times with Specialty (sept,jan,may). Her complete co-infection panel was negative from Igenex in June. Had I not received a positive lyme(Bb)result from Igenex at the time, I would've continued down the wrong path. She also tested positive for RMSF with Quest (sept,jan,may) which the titer has gone from 1:256 to 1:64 with treatment.

 

I'm glad to see that Dr. B is now using Specialty Lab for Bart as well!

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