POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

[Kati]

At risk... at risk for what?

 

[halcyon]

At risk... at risk for what?

For being considered elevated levels.

 

[Kati]

For being considered elevated levels.

So basically, they are not entirely sure what the threshold should be? It's so hard to hover between the latest scientific breakthrough, cutting edge and a useless family practice which still believes it's all in the head.

 

[sb4]

Sorry for the dumb question but I have tried searching on how to pay for centrifuge blood in the UK but have come up short. How would I go about this, GP, hospital?

 

[kms1990]

Sorry for the dumb question but I have tried searching on how to pay for centrifuge blood in the UK but have come up short. How would I go about this, GP, hospital?

I'm not from the UK but here in the US most labs will do this for you if you have a doctors order. Any facility specifically for blood work should have a centrifuge. A GPs office should but may not in all cases if they have blood work done out of the office.

 

[sb4]

I'm not from the UK but here in the US most labs will do this for you if you have a doctors order. Any facility specifically for blood work should have a centrifuge. A GPs office should but may not in all cases if they have blood work done out of the office.

I don't think my GP does. Only other place I know would be the hospital however don't think they will offer that service. I have no idea where the labs are either. Would be interested in others from uk who have done this. Google has been little help.

 

[ukxmrv]

I don't think my GP does. Only other place I know would be the hospital however don't think they will offer that service. I have no idea where the labs are either. Would be interested in others from uk who have done this. Google has been little help.

You could approach a lab that offers private health tests and see of they will do. It's possible they will or if a private doctor orders it for you

In the past I've had private blood tests carried out at labs where this needs to be done first. Been years now though sorry

Here are some clinics

http://www.biolab.co.uk/

http://www.pulsescreening.co.uk/lab_tests.html

http://www.tdlpathology.com/services-divisions/patient-services

 

[Jackie M]

When Fed Ex comes to you, do they bring the Clinicpak wrap and a box, or did you need to use a box of your own in order to have it picked up?

 

[Gingergrrl]

When Fed Ex comes to you, do they bring the Clinicpak wrap and a box, or did you need to use a box of your own in order to have it picked up?

I did the test at a specialty lab near my home that did the blood draw and provided the clinical pack and Fedex International Overnight Service. So I paid for all of it together which was easier for me than having to go to multiple places. I called in advance to make sure they could do exactly what I needed. If you are having your blood drawn at home, I am not sure how it works.

 

[Jackie M]

Thanks for the response. I talked to my local hospital lab and they will draw it and put it in a box for me. They said they regularly have to box serum samples for the CDC and the like, so it's no big deal. I have a doctor's order saying to draw one tube of blood, centrifuge, and give to me, as well as the Celltrend instructions. So I only need the clinical wrapping which I believe fedex will bring to me - going to call tomorrow.

 

[sb4]

I recently made all the arrangements but didn't know I had to bring blood tube color information so spent 2hrs for no reason, so don't make same silly mistake as me. Ahhhh, why can't things be simple?

 

[Jackie M]

I recently made all the arrangements but didn't know I had to bring blood tube color information so spent 2hrs for no reason, so don't make same silly mistake as me. Ahhhh, why can't things be simple?

That's rough! I stopped at the lab and dropped off all the instructions yesterday, and am going Monday. Does anyone here know their FedEx number? I didn't sleep a minute last night, so today was lost.

 

[Jackie M]

I probably should just call FedEx so I will know for sure how to prepare the label properly.

I gave a pint of blood two days ago. I wonder if that can affect my antibody levels significantly enough to alter results from the blood draw on Monday.

 

[sb4]

That's rough! I stopped at the lab and dropped off all the instructions yesterday, and am going Monday. Does anyone here know their FedEx number? I didn't sleep a minute last night, so today was lost.

They don't give out their fedex num anymore.

 

[Jackie M]

Good to know! Thank you. I have a fedex store nearby. I think rather than call, I'll just head over there with the address and let them help me label it appropriately.

It's coming up as $99 to ship it FedEx priority from the Midwest, which would get it there Wednesday if I ship on Monday.

UPS is coming up as $67 to get there midday Wednesday, $47 to get there before the end of the day Wednesday.

I'm unsure of the pros and cons of UPS vs FedEx aside from it sounds as though a FedEx driver would be very familiar with the lab since that's who they usually use.

www.shipbrain.com
This website compares shipping prices for you - very neat. Unsure of what to put for dimensions since the box will be in a wrap. I put in the box dimensions here, but not on the UPS website, and the UPS website quoted cheaper than shipbrain.

ETA: UPS info and shipbrain

 

[Gingergrrl]

I recently made all the arrangements but didn't know I had to bring blood tube color information so spent 2hrs for no reason, so don't make same silly mistake as me. Ahhhh, why can't things be simple?

Am so sorry and it is the "gold" tube. I have all of the info and please feel free to ask me if you have any other questions. I spoke w/the head of cell trend labs on the phone before I did the test and asked all of my questions. I was one of the first U.S. patients to do the test and I wanted to be certain that I did everything right. Now my doctor is testing most of his patients, and has coordinated the testing procedure with Cell Trend, but this had not yet occurred when I did it and I was sort of the trailblazer for the U.S. patients LOL.

Does anyone here know their FedEx number?

At the time, Cell Trend gave me their Fedex # so when I did the shipping it was free but then when I paid for all of the testing (after me and my doctor got the results), I paid for the shipping at that time (so it was not actually free, just postponed LOL). I had to go to my bank in person and do a wire transfer from U.S. dollars to Euros but now they are set-up with PayPal so I don't think anyone in the U.S. will have to do what I did anymore. And am fairly certain they no longer give out the Fedex #.

I'm unsure of the pros and cons of UPS vs FedEx aside from it sounds as though a FedEx driver would be very familiar with the lab since that's who they usually use.

I would honestly go with Fedex International Overnight Clinical Pack b/c this is what Cell Trend prefers and uses. UPS might not be familiar with it and I could see something potentially going wrong.

ETA: The head of Cell Trend (Dr. Heidecke) told me that it is okay if the sample arrives in 48-72 hours b/c even with the "Overnight" shipping it takes longer to get from the U.S. to Germany. Mine had a tracking number and updates and it actually went from Los Angeles to Cell Trend Lab in 48 hours but can't imagine how it would get there in 24 hours. Just wanted to reassure you guys that it is okay if it takes longer than 24 hours b/c of the way it's packed in the Clinical Pack.

 

[sb4]

I'm half considering giving up on the test and just treating myself as if I have antibodies and seeing if I get better.

After ringing the first place and telling them I now have the correct information they say they won't do it unless I have test kit.

So I ring the next place and they say they won't draw blood without written permission from a doctor.

Christ alive, if I had a centrifuge Id do it myself!

 

[sb4]

Do we need both the red gray and gold tubes or is either one fine.

 

[Gingergrrl]

I'm half considering giving up on the test and just treating myself as if I have antibodies and seeing if I get better.

How would you do this? Do you mean you would try IVIG or RTX without knowing if you had the Autoantibodies? For me, it was confirmation of 11 different Auto-Abs that made the potential risks of these treatments worth it. I've been doing IVIG since July 2016 (low dose from July-Sept, moderate dose Oct & Nov, and high dose from Dec until May). It's been well worth it, as I suspect RTX will be in the future, but in the absence of knowing that I had so many Auto-Abs driving my symptoms, I would not have done it. We are also re-testing my Cell Trend as I do IVIG to see if my results change.

Do we need both the red gray and gold tubes or is either one fine.

I only needed a gold tube per Dr. Heidecke (the director of Cell Trend) so I think the lab is confused if they are saying otherwise.

So I ring the next place and they say they won't draw blood without written permission from a doctor.

In my state (CA) you do require a doctors note and the patient cannot just request a blood draw. So my doctor typed a very brief note (just a few sentences) and I brought it to the lab along the the req from Cell Trend. They accepted the note without any issues. But I only knew this b/c the specialty lab told me on the phone or I could have easily shown up for my appt without it.

 

[halcyon]

Do we need both the red gray and gold tubes or is either one fine.

I've attached the guide that Celltrend sent me. The blood needs to be collected into a gold or tiger top serum separator tube, clotted, then spun down.