Help with daughter's Igenix Results

[texascatholic]

I've had the same fears about LLMDs. Good to hear this is not the norm.

Thanks for everyone's input on these issues!

[sf_mom]

Our LLMD would not diagnose Lyme until we had confirmatory results. He also stated that an individual can have a hyper immune response i.e. PANDAS/PITANDS and many infecting can cause the toppling of the immune system. Two of the major offending bacteria's that he mentioned to me was Lyme and mycoplasma as well...... Regardless of the infecting agent he thought he could help and has with all three of our children.

 

Unfortunately, due to the political climate and insurance minders most LLMD are overly cautious and make every effort not to clinically diagnose solely. We tested with several different methods and have used a variety of different testing labs.

[sptcmom]

Hi Jodie-

Can i ask what your sons symptoms were?? My daughter has NO joint pain, headaches, etc....JUST the ocd/ major tics/ hyper and sep. anxiety.

My fear is that what I've heard is LLMD's basically are totally tunnel-vision lyme---if you go to one, you WILL be treated for Lyme.

 

Eljomom

Its a hard decision and tons of info to digest. We were on the PANDAS path too as were many moms here and my DS still reacts to strep. It took 3 months for me to accept and pursue the possibility of lyme.Thanks to the persistence and suppport of so many wonderful moms here.

I did heavy duty Igenex testing for my DS- complete coinfection panel and complete lyme panel and over a thousand dollars later Igenex ruled everything negative. We had many IND band and Bartonella was equivocal meaning = 1:20.

I was overjoyed, relieved, our local DAN doc also an ILADS member (NOT LLMD)said it was all negative and done.

But DH and I decided to keep our appointment with Dr Jones and it was the BEST thing we could've done for our DS at this point.

See, the equivocal for Bartonella was because Igenex testing doesn't go further than that. Dr J sent blood to another lab that goes further and DS's Bartonella titers were actually 1:245 which is pretty high. We started treatment and for the 1st time in 6 years I've seen my DS emerge and begin his journey towards healing.

Please, review all the info, read "Cure Unknown". Lyme is sickeningly political. NJ has lost several good LLMDs to insurance bullying or their affiliated hosp bullying to follow CDC stds and pretend chronic Lyme or coinfections don't exist. Some very good LLMDs have gone over to the "dark side" to maintain their affiliations with insurance carriers and hosp.

Its worth checking out. Lyme is a clinical diagnosis ater all. Not trying to push towards Lyme at all. I don't think anyone would but its worth checking as a rule out and checking how its supposed to be checked out not just lab work, a good LLMD.

Jodie

 

Hi

DS had a classic PANDAS onset. Hyper, dilated pupils, motor tics, OCD, manic, frequency of urination etc. textbook PANDAS. A year before he did have leg muscle aches and pains deemed growing pains, NO joint issues, all ortho tests negative and massive iron deficiency.

All of the above didn't go anywhere after PANDAs Rx and even IVIG. His symptoms are just beginning to fade bit by bit after we started on our Bartonella journey.

Jodie

Edited December 15, 2010 by sptcmom