Deb’s IGeneX results positive: June 24, 2010

Hi Group,
Many of you expressed an interest in my test results when they came back. They have been at the doctor's office for a few days; the medical assistant finally gave me a call this morning along with a 10 page fax from IGeneX. Dr. Hirt is calling my case positive for Lyme; negative for co-infections.

IGeneX called yesterday and requested my authorization to run a 31 Epitope, so I "knew" yesterday that I had a positive test "lurking" out there. I was just waiting for confirmation…which for me, is really a positive thing. It beats the heck out of the MS diagnosis I received 7 years ago! (I was bitten by a deer tick on January 31, 1995 and I received 4 weeks of prophylactic Doxycycline; I did not have any follow up testing done.)

The following is a brief run down on my results. Labs drawn on June 8, 2010 @ IGeneX in Palo Alto:

Lyme IgM Western Blot:   31 kDa +         41 kDa ++         66 kDa ++                   34 kDa IND               39 kDa IND             83-93 kDa IND
Lyme IgG Western Blot:      30 kDa +         41 kDa + 

Sooo…I don't "count" either from what I was able to determine from the county. Ann Mac Dowell is away at a meeting and won't be back until Monday.

Blue Cross has denied my PICC line and Rocephin. I'm working with a Blue Cross associate named Jesse. Tomorrow he will help me file a 72 hour emergency grievance. He received an extended "Lyme lesson" today and is willing to help. I'm sure he would be willing to help anyone with an Anthem Blue Cross PPO individual plan as well. The main number is: 1-800-333-0912, Jesse's extension is: 61394.

After speaking with his supervisor, he has encouraged me to write down all of the information I told him today…especially the following: (Rather than rewrite the information, I'm pasting part of a letter I faxed to Dr. Howard Hayashi.)

I called Drs. Holland and Ritter. That office will not accept me as a patient because I used IGeneX for a testing facility. Denise from that office says, "IGeneX is a fraudulent lab." They will accept me as a patient only after I test positive from one of the following labs: Quest, CCP, or Diamond. To retest, I would need to go off antibiotics for another three weeks, test, and then wait 10-15 days for results. The bill from IGeneX is $1,245.00; Blue Cross is supposed to pay 50% of this, I doubt if they will pay for more testing. Furthermore, I can't afford to wait that long for treatment.

I then called Dr. Prier's office again. They would not accept me the first time without further testing. I had further testing done, and then I learned they will not accept test results from IGeneX. They will only accept me as a patient if I have testing with a lab approved by their office. Sondra said, "Dr. Prier does not accept IGeneX results because they are not reliable."

This information is probably not newsworthy, but it might be useful to individuals in the future who will be making their way through the system. Blue Cross assures me this information will go into the doctor's files because they are providers. I wanted assurances that the information would not go against IGeneX, and was told Blue Cross didn't have an issue with the lab at all.

Tuesday I have an appointment with Dr. Hirt in Tarzana. We'll see if he "lets" me come home, or decides to bypass Blue Cross and hospitalize me and have the PICC line done that way. It seems a bit extreme, but I've been informed that it is an option.

If the 72 hour emergency grievance fails, I would then go to a 30 day grievance. There is no guarantee that will pass either. The problem: Blue Cross wants me to try oral antibiotics before I go to IV Rocephin. Dr. Hirt believes the Lyme has progressed far enough and does not want to waste any more time.
Take care,

Debs