My daughter's pediatrician ordered I believe an ELISA, Western Blot and Mycoplasma. I've been calling for the results and they kept telling me they weren't back yet.
I called again today (10 days later) and I'm told that they wouldn't do the Western Blot b/c the other one came back negative even though her Dr. ordered it.
They took 5 tubes of blood out of my little 24 lb. girl and just threw it away!!!! I am so mad b/c my LLMD said she would test her but my daughter had an appointment coming up anyway. If they told me in advance that they wouldn't do the Western Blot then I wouldn't have had it done there!!! I don't want to put her through that again!!!
I'm so mad I don't even know what to do with myself!!! Sorry, just need to vent!
Posted by mtree (Member # 14305) on :
That is awfull!!!!!!!!!!
didn't they go against doctors orders though......
thats NOT right........
your doctor should be mad too and cantact them.....they didn't do what he asked them to do.....
I wouldn't use that lab again if you don't have to....
so sorry your little one had to go through that.....and 5 vials...thats alot even for me a grown women......
I'll be mad with you!!!!] have a better day..... vent all ya want..... mtree
Posted by map1131 (Member # 2022) on :
I bet I could name the lab? Because I know these type lab rules. If the ELISHA is negative, no need to proceed with the full western blot for lyme & company.
I know you are angry Mom and I don't blame you. I've even been on the phone with my lab and the head Dr. at that lab about their policies. I demanded to speak to the main man and left a message.
He called me back. Believe it or not. We had an interesting conversation. He claimed if the lab had known I had a positive western blot in the past, they would of completed the whole complete western blot. Boy, that made me angrier.
I almost told him, his lab people wouldn't know lyme & company if it bite him in the a@&. But I was nice. I also didn't tell him what lab did test me highly positive (Igenex)for lyme just 3 yrs before.
I also told him that if my body isn't producing antibodies, like according to his lab results, with all the symptoms I was having, that I'm smart enough to know I'm in deep doodoo.
He was pretty sharp. He told me that was true. I finally gave up spending my energy talking to a duck. I was nice enough not to quack at him, too.
Did the lab find any type mycoplasma antibodies? Or elevated titers on that part of blood test? Did you get any answers for your young child?
Pam
Posted by Geneal (Member # 10375) on :
Prior to getting my children's blood taken, I got some lanocaine cream
From my neighbors (both RN's). I believe it is prescription only.
I put the cream on their arms where I knew they would be stuck.
Wrapped some plastic wrap around it (so they wouldn't wipe it off),
And about 1.5 hours later they were good to go.
They didn't feel a thing. Neither did I.
So sorry about the idiots.
I know how you feel.....I do.
It always makes me wonder what exactly do they do with "extra" blood.
I had a test run through LabCorp....they didn't code it right.
Stuck me 5 times to get the blood.
Blood discarded due to miscoding.
Call your LLMD. Ask them to Rx some lanocaine cream.
It really makes things easier.
Hugs,
Geneal
Posted by laura j (Member # 14257) on :
Her pediatrician was out today and I was told she'll be contacting me tomorrow.
All the nurse could tell me today was that the ELISA was negative so they couldn't proceed to the Western Blot b/c it was against "policy" and that the Mycoplasma was negative. I asked if the Mycoplasma showed anything at all and she said she didn't have that info, just that it's negative.
I will be interested to hear what her Dr. says. I would think she'd be mad that they went against her wishes. They should have at least contacted her. I would think the risk of her possibly being congenital would be enough for them to do it.
Thanks for the Lanacaine idea Geneal. That's very smart.
Posted by laura j (Member # 14257) on :
Her pediatrician was out today and I was told she'll be contacting me tomorrow.
All the nurse could tell me today was that the ELISA was negative so they couldn't proceed to the Western Blot b/c it was against "policy" and that the Mycoplasma was negative. I asked if the Mycoplasma showed anything at all and she said she didn't have that info, just that it's negative.
I will be interested to hear what her Dr. says. I would think she'd be mad that they went against her wishes. They should have at least contacted her. I would think the risk of her possibly being congenital would be enough for them to do it.
Thanks for the Lanacaine idea Geneal. That's very smart.
Posted by laura j (Member # 14257) on :
Her pediatrician was out today and I was told she'll be contacting me tomorrow.
All the nurse could tell me today was that the ELISA was negative so they couldn't proceed to the Western Blot b/c it was against "policy" and that the Mycoplasma was negative. I asked if the Mycoplasma showed anything at all and she said she didn't have that info, just that it's negative.
I will be interested to hear what her Dr. says. I would think she'd be mad that they went against her wishes. They should have at least contacted her. I would think the risk of her possibly being congenital would be enough for them to do it.
Thanks for the Lanacaine idea Geneal. That's very smart.
Posted by hshbmom (Member # 9478) on :
Hi Laura,
I'd be furious too. I'm sorry your child had to endure that pain and get no results.
Did they take blood from a vein or an artery?
An arterial blood draw is so much easier on a child, but the doctor must specifically order it.
My kids suffered horrible trauma during their first and only lab visit. There were 3 nurses wrestling them and trying to pin them down.
Numbing cream would have helped, but no one mentioned it or offered it. Blood draws without numbing cream are cruel to babies, toddlers, and children.
It is different in a life threatening emergency when you don't have time for the medicine to work, but otherwise numbing cream should be required.
Posted by merrygirl (Member # 12041) on :
Are you sure that the lab doesnt "hold" the blood for a certain amount of time??
At least in Vet medicine we held the vials of blood for 1 week.
I would call and check.
well now it has been 10 plus days so prob no good now anyway..
So sorry Melissa
Posted by hshbmom (Member # 9478) on :
Hi Laura,
Did you find out if they kept your daughter's blood or anything?
Did you get to talk to the pediatrician?
Hang in there Mom.
Posted by fetz (Member # 11843) on :
Hi Laura,
I'm so sorry to hear about your little girl. I would be livid! My daughter is only 18 pounds, just turned a year.
How did you know to have your daughter tested? Was she having symptoms? I'm so afraid to miss something wit my daughter because she can't speak yet.
Lately she's been unwell. The doctors are saying "I think it might be an ear infection, " but the antibiotics aren't bringing down the fever.
Thanks for any input.
Posted by laura j (Member # 14257) on :
Hi Fetz,
I had Lyme while pregnant with her but didn't know it at the time so I wanted to have her tested. Every time she gets sick it's always in the back of my head. I'm really hoping it's not Lyme.
I really hope your little one will be okay!
hshbmom,
I talked to her pediatrician and they didn't keep her blood. She's very sorry about the whole thing and said that in the past, if she specifically ordered it that way that they would do it but they've now changed the protocol and won't proceed to the WB if ELISA is neg., no ifs, ands or buts. I'm not sure what to do next.
Posted by just don (Member # 1129) on :
Sounds as if you really didnt loose anything anyway,,,they werent going to test anything positive if they used both hands,,,couldnt hit their fanny.
Request a Igenex test kit,,,have your doc draw it on proper day and you WILL get a decent test.
Your doc should do that,,,just because of what happened!! Maybe do it on EVERY test from NOW on as a learning experience.
How do you think those ducks keep saying,,,we dont have 'lymes' here,,,they have worthless labs run worthless tests,,,they NEVER will find it!!
Posted by Tincup (Member # 5829) on :
Laura..
It burns me to watch this happen to an adult.. but when it is a child.. may THE idiots doing that burn!!!
You said.. "I talked to her pediatrician and they didn't keep her blood. She's very sorry about the whole thing and said that in the past, if she specifically ordered it that way that they would do it but they've now changed the protocol and won't proceed to the WB if ELISA is neg., no ifs, ands or buts. I'm not sure what to do next."
First report that in detail to the LDA. Please. It will help them as they are collecting evidence stuff to use.
Second.. how about a Lyme Urine Antigen test? At least no needle sticks.
Might check IGeneX and see if that is possible.
Bless your hearts.. I could scream too!
Posted by laura j (Member # 14257) on :
Hi Just Don,
How do I know if it's a "proper day"? And how much does it cost to get a test kit from Igenex? Maybe I should get one for both of us. Maybe my husband too. Are there additional fees for them to process the results? What does the kit include?
Tincup,
Is the urine antigen test available through regular labs or just Igenex?
I'm also irritated b/c my Lyme doc said she'd test my daughter but if she had an appt. coming up w/her pediatrician anyway than she could get tested there. She should have known better! Her pediatrician said from now on for anything Lyme related or further testing she should go to my Lyme doc anyway. I agree. I should have done that in the first place. I feel bad that I put her through all that for nothing.
Posted by just don (Member # 1129) on :
What I really "meant" was to get the draw properly done on Monday or Tuesday so it gets there and gets done during THAT week.
IF it sets thru the weekend the sample is ruined. Take heart people that get THIERS drawen on friday or saturday and then say ,,,nope you dont have it ,,,see!! Waving negative test in YOUR face!!
ALOT of this is KNOWN in medical world,they KNOW how to ensure a negative test and they USE it!! others are just that STUPID!!!
Their are other posts on how to order the RIGHT test kit,,,look them up,,,I am NOT smart enough to KNOW,,,just know enough to say so!!
I am THINKING the test kits are FREE,,,but the test is $___again I dont know for sure. others here do.
I understand IF your getting a co-infection test,,,do the Fry labs test. igenex for western blot.
be well--just don--
Posted by laura j (Member # 14257) on :
Thanks just don! I'll look into it.
Posted by hshbmom (Member # 9478) on :
Hi Laura,
Igenex will give you a family discount if you ask for it. Every little bit helps.
My neice has/had Lyme while pregnant. She has her child tested regularly with the urine test. This test was recommended by her very experienced and well known LLMD.
Posted by Lymetoo (Member # 743) on :
The kit is free. You pay when you send it in. Your LLMD will need to sign it when you send it in.
The Lyme Dot is the one Tincup is referring to. I dont' know the number for that one. It's not real accurate in my opinion.
Posted by Tincup (Member # 5829) on :
Thanks for answering the questions posed to me. Been busy and hard to get everywhere! Hope Laura has all the answers she needs now.
And yes.. the Lyme Urine test.. now called Lyme Dot I believe.
I'd like to address one comment if I may?
Tutu said she didn't think it was real accurate.
I believe she means the chances of getting a positive are not as easy as some of the blood tests might be.. but IF you do get a positive, it is accurate.
I certainly can't speak for her.. so I may be mistaken... but if she doesn't mean what I just said...
I do.
Usually PCR's are less likely to detect the exposure... but are VERY accurate if you do.
Posted by lymemommy (Member # 12495) on :
Laura j,
I have to chime in here on the coinfection testing, as I have been through it with my child.
One of his docs is a LLMD ID doc (yes, they do exist) and he ordered over 20 blood tests for possible coinfections.
That's a LOT of blood to get out of a 5 year old kid. An when it was all said and done, it still doesn't cover all the known coinfections, because they don't have tests for all the known strains of co-infections.
If I had to do it over again, I would inquire about Fry labs, even though it is an expense.
Blood tests have their limitations, the doctor has to look at the clinical picture. Since you are dealing with a concern about congenital lyme, that clinical picture starts with you.
Talk to your LLMD, that is the person best able to advise on where to go with this. I know it is scary not knowing if your child is ok, but the best way to reassure yourself is to talk to an llmd.
Hugs and kisses for your little one, and I hope for her sake and yours that she is ok. kp
ps, all of my son's tests came out negative, but his symptoms are suggestive of bart, at the least.
Posted by bettyg (Member # 6147) on :
igenex's western blot igm and igg cost is $190 PREPAID unless you are on medicare! they file insurance; it's free or you might pay $30 something!
same on co-infections; medicare free or very little $$.
fry labs is much cheapter on CO-INFECTION testing than igenex... Posted by laura j (Member # 14257) on :
Hi lymemommy,
Yes, I know they exist b/c guess what?! My Lyme doc happens to be an LLMD ID! I know, weird huh?
bettyg,
Thanks so much for the info on prices! That's not too bad. My LLMD is treating me regardless of test results so I'm not too concerned about my tests but when it comes to my daughter I think I will get her tested through Igenex or Fry. Thanks again!
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Sorry, just need to vent!
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mtree
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