Looking for LlMD in Washington State

[JuliaFaith]

We want to do lyme testing of my son, but my dr. does not know much about lyme. Anyone know what tests to order through Igenex? Anyone know of a dr. in the Seattle area?

 

DS12 has been sick for 8 mos. with very little relief. He has been diagnosed with PANDAS but all other tests have come back neg. and he has not gotten better. Recent reaction to Biaxen was horrible with extreme symptoms so want to try Igenex since we have very little to go on.

 

Thank you for any ideas.

[dut]

hi - dr t sent me an igenex order form for our ds which we haven't filled for variousa reasons but intend to do so soon for ds and dd.

 

It has, what dr t said are, west coast specific bits. I've got a clingy sick 3 yr old and my dd just came home sick from school (hooray) so won't dig it out right now but will find it this afternoon and will post what he checked for us on the test, sometime later today..

[JuliaFaith]

hi - dr t sent me an igenex order form for our ds which we haven't filled for variousa reasons but intend to do so soon for ds and dd.

 

It has, what dr t said are, west coast specific bits. I've got a clingy sick 3 yr old and my dd just came home sick from school (hooray) so won't dig it out right now but will find it this afternoon and will post what he checked for us on the test, sometime later today..

We are in all the same places! Thank you Thank you Thank you for this information. Is Dr. T (Triffileti?). Will wait to hear from you.

 

Best wishes for your children!

[dut]

Hello again... Dr Trifiletti yes. The form is from Igenex and it's their requisition form

 

For my ds, Dr T checked off -

 

Complete Lyme Panels (western blot IgG and IgM, Lyme IgG/IgA/IgM screen, Lyme PCR serum, Lyme PCR-W blood) 6050

 

Western Regional Co-infection Panel (babesia duncani (WA-1) IgG anmd IgM, Babesia FISH, HME IgG and IgM, HGE IgG and IgM, Bartonella IgG and IgM) 5080

 

 

that was it... hope this helps..

 

( not sure what babesia FISh is?)

[JuliaFaith]

Hello again... Dr Trifiletti yes. The form is from Igenex and it's their requisition form

 

For my ds, Dr T checked off -

 

Complete Lyme Panels (western blot IgG and IgM, Lyme IgG/IgA/IgM screen, Lyme PCR serum, Lyme PCR-W blood) 6050

 

Western Regional Co-infection Panel (babesia duncani (WA-1) IgG anmd IgM, Babesia FISH, HME IgG and IgM, HGE IgG and IgM, Bartonella IgG and IgM) 5080

 

 

that was it... hope this helps..

 

( not sure what babesia FISh is?)

Thank you for the info. I was under the impression that the 5080 included the Complete lyme panels. We are going to look at the use of abx before doing the test since ds has been on them for 5 days. We are taking him off of them now since his symptoms seem to be getting worse rather than better. Will see Dr. Keller on Thurs. morning to sign off on the Igenex tests. Hopefully, the lab on the 1st floor can do the blood draw.

 

Best luck with your kids and their current illnesses. We are thinking about you.

 

Oh, and Babesia FISH apparently is a test for the RNA (genetic material) of Babesia.

Edited October 4, 2010 by JuliaFaith

[KeithandElizabeth]

Hello:

 

You may want to contact ILADS for a list of doctors close to you.

 

Another blood test to consider on top of the IGENEX is the mycoplasma and the C3d, circulating immune complexes. Some people, who have elevated circulating immune complexes may have false negative IGENEX tests because the IGG's are hiding out in the complexes. These additional blood tests should help with the big picture.

 

Elizabeth

[PacificMama]

Hi,

 

I posted this information to you some time back... not sure if you ever saw it. Your child's symptoms sure sound like a lyme possibility. Not sure if you know that Pacific NW (northern Cal., Oregon, Washington) are considered endemic for lyme by CDC. As you mentioned, right now you just need some doctor to sign off on the Igenex tests. Step 2, if necessary, it to find a qualified llmd. Also, as mentioned, call Igenex to get the recommended tests. Washington/pacific coast has it's own unique strains.

 

Here are some ways to find one near you:

 

Ilads.org -- Elizabeth mentioned this

 

lymenet.org -- post in Flash discussions, under "searching for a doctor"

 

Contact the Oregon Lyme support group (I believe they handle WA as well) at http://oregonlyme.org/

 

Best of luck.

[JuliaFaith]

Hello:

 

You may want to contact ILADS for a list of doctors close to you.

 

Another blood test to consider on top of the IGENEX is the mycoplasma and the C3d, circulating immune complexes. Some people, who have elevated circulating immune complexes may have false negative IGENEX tests because the IGG's are hiding out in the complexes. These additional blood tests should help with the big picture.

 

Elizabeth

We have done the mycoplasma 3 times and every time it has been neg. Not sure if the C3d has been done so will ask our Dr. Thank you so much for your information.

 

Julia

[JuliaFaith]

Hi,

 

I posted this information to you some time back... not sure if you ever saw it. Your child's symptoms sure sound like a lyme possibility. Not sure if you know that Pacific NW (northern Cal., Oregon, Washington) are considered endemic for lyme by CDC. As you mentioned, right now you just need some doctor to sign off on the Igenex tests. Step 2, if necessary, it to find a qualified llmd. Also, as mentioned, call Igenex to get the recommended tests. Washington/pacific coast has it's own unique strains.

 

Here are some ways to find one near you:

 

Ilads.org -- Elizabeth mentioned this

 

lymenet.org -- post in Flash discussions, under "searching for a doctor"

 

Contact the Oregon Lyme support group (I believe they handle WA as well) at http://oregonlyme.org/

 

Best of luck.

 

Thank you for all of this information. Yes, I do remember your prior suggestions. I did look at the Oregon Lyme support group but their web page looks pretty new and is a little short on some information still. They have tabs for it but nothing there as of yet.

 

I did get names of some LLMD's just today in our area (Seattle) so that is a relief. We have a great Dr. but she is just not knowledgable in lyme disease. DS is on abx right now for another week then he has to be off of them for another week after that before doing the tests. Not sure if we should keep him on the abx or not. His Dr. took him off yesterday because of the migraine and put him back on them today. She mentioned a 'healing crisis'.

 

Best wishes for you and your family.

 

Julia

[PacificMama]

Hi Julia,

Glad you checked out the Oregon lyme support group. I really gave you the link more to give you the phone number to call. The woman who heads the state group has lead the group for years and years, and there are other folks who lead local chapters. She is very knowledgeable and helpful about doctors in Washington and Oregon. As for the web site, it is probably just going through another upgrade.

 

Igenex will give you the advice as to whether you son needs to go off the abx. That is only true for certain tests, but I do not believe it is true for the basic western blot. The "healing crisis" your doctor refers to could be a herx reaction to the abx (an initial worsening of symptoms).

 

Good luck... please keep us posted.

 

I did look at the Oregon Lyme support group but their web page looks pretty new and is a little short on some information still. They have tabs for it but nothing there as of yet.

 

I did get names of some LLMD's just today in our area (Seattle) so that is a relief. We have a great Dr. but she is just not knowledgable in lyme disease. DS is on abx right now for another week then he has to be off of them for another week after that before doing the tests. Not sure if we should keep him on the abx or not. His Dr. took him off yesterday because of the migraine and put him back on them today. She mentioned a 'healing crisis'.

 

Best wishes for you and your family.

 

Julia

[lss]

We want to do lyme testing of my son, but my dr. does not know much about lyme. Anyone know what tests to order through Igenex? Anyone know of a dr. in the Seattle area?

 

DS12 has been sick for 8 mos. with very little relief. He has been diagnosed with PANDAS but all other tests have come back neg. and he has not gotten better. Recent reaction to Biaxen was horrible with extreme symptoms so want to try Igenex since we have very little to go on.

 

Thank you for any ideas.

 

 

 

I pm'd you with names of docs in your area.

 

Linda

[JuliaFaith]

 

 

I pm'd you with names of docs in your area.

 

Linda

[/quote

 

Thank you very much for those names. I just spoke with a man at http://oregonlyme.og/ who gave me an overview of those same doctors and their backgrounds. Your information gave us a good starting point.

 

Best wishes for you and your family.

Edited October 6, 2010 by JuliaFaith