philamom

Wonderful Julia! Thank you for sharing. Keep us posted on his recovery.

Since we're sharing... Two years ago, I donated blood to the Red Cross. I received a letter saying that when they first tested my blood, it suggested I might have an infection with HIV. When they ran additional tests, the results were negative, indicating there was no infection. They then said even though the additional tests were negative, I am no longer eligble to donate blood. I was shocked...and obviously don't have an HIV infection. In December, I received a positive lyme test. I wonder if the lyme had something to do with it.

Is an elevated Creatinine Serum (blood test) and trace of ketones (urine) something to be concerned of? What exactly are symptoms of kidney failure? I'm sure it's probably just some of the usual havoc lyme & Co. can do to your system, but wanted to ask anyway. My daughter also has a low level of Pyruvic Acid (blood test). Thx!

I'm also interested in knowing this. My daughter's recent blood tests showed normal levels of zinc, magnesium, B-12 (didn't check b-6 though).

The place I ordered from required the doc's name, phone and fax #'s. They will run the test and send to the doctor. But I did not need to give them anything else up front. This is where I got it from. I could not get the vitamin diagnostic info for some reason. I hope this works just as well. http://www.pyroluriatesting.com/?page=shop/browse&category_id=2&CLSN_1407=13088633411407ddefc07aba408a1239 Thanks!

Thanks Susan. I have to read the articles again but do you need a doctors script for the urine test?

Wilma- I pm'd you the name of a doc in nothern NJ a while back. Do you still have his info?

Is anyone ordering the urine test mentioned in the above article for this? Can it be done with children? thx

I was under the impression the labs prefer the tick to be alive (could be wrong though). For more information you can check out www.tickencounter.org/ticktesting

I'm sorry...I misunderstood. To kill a tick put in alcohol. To keep a tick alive to send out for testing if needed, put in a vial with a slightly moist cotton ball. HTH

Do not put it in alcohol - that will kill it. Put it in a vial with a (slightly) moist cotton ball. A plastic bag will work as well. It's a good idea to keep one with the correct shape tweezers in your car as well. on a side note-- I'm always excited hearing of the progress your son is making!!

Kara- I was in the same situation in September. My daughter did not know she had lyme. I called prior to let the office know I wanted to speak to Dr. J privately before he saw her. They had no problems with such, and even joked they would take down all pictures of lyme related materials before our appointment. I had my mother with me to keep her occupied during our visit. There are pamplets about lyme in his waiting room - so if she is left alone she might start reading them. We eventually told our daughter - before her third appt. with him.

My daughter(9) takes Minocin (instead of doxy) as part of her combo for Bartonella & RMSF.

Add some sliced lemon to the water if she'll drink it.

You mean the answer wasn't "Under Pressure". You gotta love the good ol classic rock songs!

Plz just disregard this post. It is probably nothing. I do not know how to delete posts. sorry. Hey - you never know...doesn't hurt to throw it out there. Is it gone (or going away) today?

Susan- Thanks for posting this article. I'm really interested in hearing more so please update when she begins treatment. Good luck! and hopefully she doesn't become too sick from it.

I'm so happy to hear this Wilma. I pray it continues!

Ok - just read your update on the pandas forum. Yaaaayy!

Wilma- You were not being disrespectful. It's good to ask questions - don't stop - it's how we move forward. Your a great Mom...can't wear to hear of your daughter's progress .

FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed. I'm not really sure where they sent it to. I called the lab today and they told me the carrier that picks it up knows where to send it to, but they had no idea. When I told them it would have to be done again if it was not sent to the Jewish Lab, she got huffy and said they send it where the computer tells them to. Arrgh...just make a phone call and let me know! I guess I'll just wait until I get the results. The email I received today said it has to be done at the Jewish Lab ONLY. I don't know if Cambridge is the Jewish Lab (doesn't sound like it). Also, on Shoemakers website there is a section that tells you HIS reference range for results...it's not the same as LabCorp/Quest. I agree with him needing to update his website!

FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! Good to know - thanks!

On his website he has instructions for new procedure by LabCorp for C3a and C4a. A futhan collection kit is used and has to be added within a minute with a chilled tube (there is other instructions as well under specimen requirements). It took 10 days for labCorp to order the kit and two lab technicians to figure out all the different tests . Besides the shoemaker labs, we had a script to check vitamin, minerals, metals, and a script to re run some that Quest messed up on last month. They took over 15 tubes...more than they ever did on a child. My daughter had numbing cream on one arm only. They ran out of blood and had to switch to other arm. My daughter was crying a storm. But a far picture from this time last year, when we couldn't even get her to blood draws. She's a trooper! Anyway, the company emailed me saying they are having quality control issues with the futhan method. It just needs to go to NJC (National Jewish). Which I'm not even certain that happened.

Ok...thanks. I'll have to call and see what test they feel needs fasting. My daughter does better with food in her stomach. Here are the tests checked off on the Shoemaker Physician Order Sheet: HLA DR by PCR, VIP, MSH, ACTH, CRP, TGF-B1 ,MMP-9, PAl-1, Lipid with Phenotype, B-Type Natriuretic Peptide (BNP), C3a & C4a "jewish lab". I just had a doctor sign off on the sheet with all the labcorps test marked. Is anyone running all of these tests? If anyone is running any of the Shoemaker labs, you do NOT need to use the Futhan method. I printed instructions off his website for collection of the C3a & C34 for LabCorp (which says to use the futhan method). It was a huge 1 1/2 hour ordeal. When I got home I received an email from Surviving Mold website (emailed them last thursday for some guidance) saying not to use the Futhan method. arrgh! There is no way my daughter will ever step foot in labcorp again.

I was told by daughter's llmd (Dr. J) that ivig/pex was ok. The concern is with blood tranfusions. I don't know...scary. There are two adults in the lyme support group I attend receiving ivig to help with neuropathy lyme. My daughter and I are both positive for lyme - I did not have any infusions.