testing the rest of the family

[aidansmom]

We are treating Aidan for congenital Lyme and I have been thinking of testing the rest of the family. Each person has had their own symptoms that I have worried about but nothing nearly as severe as Aidan. I finally got my nerve to ask our new pediatrician to sign the order for a Lyme test for the other 2 children and she said she would.

 

I was planning on just doing the basic Western blot for each - any advice on this?

I don't think our ped. is Lyme literate but she seems open and has not criticized what we are doing.

 

Now I am trying to get up the nerve to schedule an appointment with my doctor who is also new to me and see if he will order for me and dh.

 

I am still conflicted about this. Will doing the testing leave me more confused. Because a negative does not necessarily mean negative, lots of IND means maybe and if positive do you treat? But, it could provide more data - especially doing the whole family.

Elizabeth

Edited April 7, 2011 by aidan'smom

[MichaelTampa]

I think the western blot adds to the information you have, so it's something that is probably worthwhile. The IGeneX is more expensive but tests more relevant bands. If they have some symptoms and a test indicates signs of lyme, I would think treating would make a lot of sense. By not treating, more likely than not it will just progress to be more serious over time, making treatment more difficult later.

 

At least for the teenagers and adults, adding the CD57 from LabCorp also probably makes a lot of sense.

Edited April 7, 2011 by MichaelTampa

[sf_mom]

Our LLMD signed an order as a courtesy to me while only my son was a patient of his. They did not take me on officially as a patient until we had confirmatory testing.

 

-Wendy

Edited April 7, 2011 by SF Mom

[aidansmom]

Our LLMD signed an order as a courtesy to me while only my son was a patient of his. They did not take me on officially as a patient until we had confirmatory testing.

 

-Wendy

 

 

I asked that of my LLMD's office this week (via email and the nurse that i go through when I have questions) and she replied they would not order testing if we were not patients. I guess I can see why in a way to keep it clean - they probably have their reasons. But on the flip side I know the LLMD's office knows how hard it can be to get support and you would think they would be sympathetic to this situation. Also, I do not really have the money (not covered by insurance) or travel time to bring the whole family to the LLMD for treatment (but more evidence on the Western blots might convince me to work it out however I can).

 

We did talk about the rest of the family with our LLMD at our first appointment and their suggestion was to start with the most symptomatic person and go from there. They also listed some of the family members symptoms in their report following the appointment.

[adkmom]

I asked Dr. J about this..which tests to order for my son's twin brother. The whole Igenex co-panel? He said, not to bother. Just run the 2 Western Blot tests ($200). If that helps.

[aidansmom]

I asked Dr. J about this..which tests to order for my son's twin brother. The whole Igenex co-panel? He said, not to bother. Just run the 2 Western Blot tests ($200). If that helps.

 

How did the appointment with Dr. J go? I am curious what he had to say about your son.

 

Thanks for the info. I actually asked the kid's pediatrician to sign the form to order the tests for Aidan's siblings and she said yes! I plan to do just the Western Blot on them. I told her to make sure to give me a copy of the results when they come in and then I can pursue with a specialist if needed.

 

Now lets see what will happen when I ask my doctor about testing for me and dh.

[MichaelTampa]

Just as something to toss out as a possibility, directlabs.com is a place where you can get a doctor's order for lab tests, but at LabCorp only. You pay directlabs and then they pay LabCorp. I think CD57 is something like $132, so definitely not as good as through a regular doctor with insurance. You probably could get the western blot from LabCorp that way too, not sure cost, and, of course, not as good as IGeneX. Not sure this really makes sense for your situation, but just tossing it out.

 

What about, is there an NAET practitioner in your area that might get the lyme and coinfection vials and do energy testing. If you would find that meaningful, that's something probably a bit cheaper to give you some information. I tested as "allergic" to borrelia and bartonella, just coincidentally what my blood testing and clinical evaluation led my llmd to diagnose me with. And "parasites" also came up, a big problem for probably everybody with lyme.