I need to know if anyone has pulled their blood from their I.V. to get tested?
I have lab kits here and If I'm going to do this I need to know how to store it, etc.
My Picc is being pulled and they are putting me through the ms testing again.
They aren't convinced that it's Lyme just by the western blot, and symptoms.
I have to prove them wrong and establish as many indications for Lyme as possible ( as If I didn't have ENOUGH already)
I'm sorry if this sounds crazy since I haven't explained what has happened to me, but I don't have much time. My LLMD is not helping!!
Posted by arg82 (Member # 161) on :
I draw my weekly survelience labs from my port-a-cath. I get a lab kit ("Lab-in-a-Box") from my infusion company and it comes with everything I need as well as a fed-ex bag to send it to the lab in. Fed ex comes and picks up the labs at my house. I do have to have orders for the labs but I suppose I could basically check off any boxes I wanted to on the testing form that goes along with it.
I don't think it's a good idea to just blindly draw labs - you could do something wrong and risk infection. I don't know your whole situation so I can't really say much about it but just wanted to put in my experiences.
Peace and healing, Annie
Posted by Carol in PA (Member # 5338) on :
Kimmi, I'm so sorry to hear that you are having problems. Do you have an Igenex kit? I think they need blood in a purple top tube (according to my faulty memory) for the Western Blot tests. The instructions say to spin down the blood, draw off the serum to another tube, and mail the serum. Refridgeration not needed to mail.
Alternately, send the tube of whole blood. Refridgerate if not mailing immediately.
Say, I know what you could do. Call the Igenex number and ask them what the procedure would be for someone in your situation.
You should be able to maintain sterile procedure to draw the blood, although it helps to have prior experience. Do you know a nurse or lab tech who would be willing to help?
Didn't your Western Blot tests show positive bands?
Carol
Posted by Kimmi_K_75 (Member # 7438) on :
Annie, thank you for your reply.
My nurse is coming today, do you think that it would be weird for her if I asked her to draw a few extras for my own use??
Are they even allowed to do that or is it only what is ordered by the docs?
I know I sounded a whole lot desperate in my last post and I've calmed down a little since then.
what ever blood they draw goes directly to quest and I doubt they would send it anywhere else.
Posted by Kimmi_K_75 (Member # 7438) on :
Carol,
Yes, I have a lab in the box, and two other kits. I'm going to go on igenexs website and find everything out.....
Yes, my WB showed : 18kd,30kd,31kd,39kd,41kd,45kd,58kd,66kd
some + some ind yet, after seeing a pcp for the gallstones he evaluated my Lyme since the LLMD took me off the rocephin and left me hanging...he said he would set me up with a good ID ( I had a feeling this would happen, but I had to keep an open mind).
The pcp called last night to tell me that he is refusing to see me because given the mediacal records, he isn't covinced ( the ID) that it's Lyme and that I need a second opinion for the MS!! So, I'm hoping to do more Lyme tests independantly in the hope of MAYBE getting some more pos tests because these guys seem to love paper. I think that's the only way I'd go through with it.
The problem with the LLMD is a whole other long story..... I'm about to lay my son down for a nap so I can't tell it right now.
Posted by Carol in PA (Member # 5338) on :
Kimmi, I think the docs who don't know alot about Lyme have a bad case of CYA. (Cover your *** )
They are probably concerned about possible litigation, if something goes wrong.
Carol
Posted by Kimmi_K_75 (Member # 7438) on :
yeah,
Like me litagating my foot right up their
A#@ if they keep messing with me! I mean enough is enough already! What is it gonna take??
Do we need to go into their offices with several big fat ticks attached to our faces that have tattoos across them that spell out "I"M INFECTING HER RIGHT NOW"
Posted by janet thomas (Member # 7122) on :
call igenex to make sure but i think for a western blot it's a red top tube, let it clot, spin it down, need a centrifuge for that, and send the serum to igenex
or igenex will send you a collection kit. won't your LLMD sign the test request form for that?
BTW, purple top tubes contain the anticoagulant EDTA so the blood doesn't clot. Red top tubes have no anticoagulant.
When blood clots there is the clotted cells and serum. If you spin down a purple top tube there are cells and plasma.
My Lyme brain made that crystal clear, didn't it?
Posted by Littlesprout (Member # 7406) on :
Kimmi When I had my hickman, I would do my own blood drawn for monthly test (lab in the box-Lab Corp) If the blood needs to be spun down per Igenex, maybe you could go to a lab drawing location and they could spin it. From my exp. I know Lab Corp will draw the blood (from your arm, not picc/hickman) for another lab for a $25.00 charge but they will not let you walk out of the place with your blood. You have to supply the shipping package, Fed Ex slip, etc and then it will be shipped from there.
When I had my hickman and had to go in for blood testing, I would draw the blood for them because they can't access the hickman, but I can. I have crappy veins so anytime I could avoid getting stuck I would do it and never had a problem with anyone telling me "NO"
I also got a MS dx 14yrs ago, then lyme dx 6yrs ago. Dr K told me that the only MS drug safe to take for lymies is Copaxone (bad side effects, never tried it) But he is BIG on IVIG for neuro lyme. My ins comp will cover IVIG under the MS dx, so I have been doing that for 1yr, I think it is helping but takes time. If the Ins. wants to call it a "orange" when it is a "apple" that is fine as long as I can get IVIG (expense, hard to get, liquid gold) I had been getting 20g every 2wks, Dr K increased me to 50g every 2wks in May. Teresa
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