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

[Jackie M]

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.

That seems like good advice, so I'm going to follow it. Not having any issues with shipping is $30 well spent.

Does anyone recall specifically what needed to be on the label to be sure it easily gets through customs? I plan to read on it tomorrow, because I am worried I'll get a newbie at FedEx. The last time I shipped blood within the country, the FedEx employee was very weirded out. It was hilarious since I'd shipped several times before without that reaction.

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

It's either or.

 

[sb4]

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.



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.



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.

I mean doing natural treatments, I wouldn't commit to rituxamab etc without positive results.

I am still going to try for the test but try things in meantime.

 

[vision blue]

>When in the lab, insist that they centrifuge and separate the blood within 60 minutes >after the blood draw.

What states do you guys live in? I cannot find a single lab that will draw blood at my request and hand it to me, much less spin it into serum in my presence first. For the two labs i use (both hospitals, including one university hospital) , neither will do this even with a doctors note.
How did you guys get cooperative labs? Thanks. (they certainly won't hand it to me, even with docs note. I could pretend its a "kit" and build a box for it, then attach the prepaid shipping label which they then send - has anyone done it this way? Still my preferred 2 labs say they will no longer do kits. Anyone use something horrific like quest, or heaven forbid, labcorp for draw?)

@rb4- am in a similar position as you. want to see the antibodies to justify risky agressive treatment, but getting all these obstacles in my way. besides this german one, have a research lab that's agreed to test my serum for some antibodies i want if i can get it to them unofficially - but so far i can't, even with a doctors note. very frustrating.

 

[Gingergrrl]

I mean doing natural treatments, I wouldn't commit to rituxamab etc without positive results.

Thanks for explaining and I was just curious!

What states do you guys live in?

I live in CA.

How did you guys get cooperative labs?

In CA we have many "specialty labs" that do all kinds of kits and tests provided you have a note from your doctor. So the lab that I went to did everything. They drew the blood, centrifuged it per Cell Trend's instructions, packed it in the Fedex Clinical Pack, and sent it overnight to Germany w/tracking. I called in advance so they knew when I was coming and I had to bring the Lab req from Cell Trend and the doctor's note. If you are in So CA, I can PM you the name of the lab.

 

[vision blue]

HI. Thanks for the info. I am not in California, but your message led me to google "specialty labs" based on that phrase you used. When i did that, it showed a chain called something AnyLabTests that claims they do all kits. According to locator there is one about 5 miles from me (next nearest over 40 miles). I will phone them and see if i have a doc script for a 5 ml SST draw with lab instructions on spinning and prepaid mailing label from fed ex, whether they can do it. they say prices start at 25 and "on up" depending on amount of blood and complexity of instructions. thanks much.

 

[sb4]

@rb4- am in a similar position as you. want to see the antibodies to justify risky agressive treatment, but getting all these obstacles in my way. besides this german one, have a research lab that's agreed to test my serum for some antibodies i want if i can get it to them unofficially - but so far i can't, even with a doctors note. very frustrating.

It's bloody frustrating. Are you UK too?

I now have a doctors note and of the two private hospitals local, one refuse to proceed without a test kit, the other says they can't give me the blood, they would have to send it themselves however they don't do it.

Any idea how I can proceed?

I can get my hands on a gold cap blood tube, maybe I should lie and say I have a test kit...

 

[vision blue]

I am not in the UK. In the US, but now in a state with archaic laws compared to last state I was in.

I am also going to have to pretend mine is a kit. Going to get the tube myself , will make sure I print out instructions that look official, will prepay for a label that i enclose in "kit". NOt sure yet if i will fashion a box. I have a kit-like box from Ubiome, but not sure if that will make things worse and confuse the matter.

i posted above that what i did based on the responders post is google "specialty labs". in your case, maybe add UK. Turned up one chain that claims to do all kits with a doc note, so am going to call the branch closest to me and see if they would accept it w/o too much hassle (again telling them its a "kit"). when you say the won't mail it, if you tell them the "kit" has a prepaid mailer, will they do it then?

i still don't have a script from MD, but will try to get that today too.

 

[sb4]

I am not in the UK. In the US, but now in a state with archaic laws compared to last state I was in.

I am also going to have to pretend mine is a kit. Going to get the tube myself , will make sure I print out instructions that look official, will prepay for a label that i enclose in "kit". NOt sure yet if i will fashion a box. I have a kit-like box from Ubiome, but not sure if that will make things worse and confuse the matter.

i posted above that what i did based on the responders post is google "specialty labs". in your case, maybe add UK. Turned up one chain that claims to do all kits with a doc note, so am going to call the branch closest to me and see if they would accept it w/o too much hassle (again telling them its a "kit"). when you say the won't mail it, if you tell them the "kit" has a prepaid mailer, will they do it then?

i still don't have a script from MD, but will try to get that today too.

Hmm, I tried the search but it came up with nothing.

I have encountered a new hurdle. They say once blood is centrifuged it needs to be held upright and posting it to germany will ruin it. Is this right? If so how did the others in this thread send theirs?

 

[halcyon]

They say once blood is centrifuged it needs to be held upright and posting it to germany will ruin it. Is this right? If so how did the others in this thread send theirs?

They need to draw into serum separator tubes as I mentioned above. Celltrend just needs the serum. It should processed exactly the same as any other serum antibody test they send out for anything else. The gel in the serum separator tubes prevents the serum from remixing and they can be transported that way after being spun down as far as I understand.

 

[Gingergrrl]

but your message led me to google "specialty labs" based on that phrase you used. When i did that, it showed a chain called something AnyLabTests that claims they do all kits.

That is great news @vision blue and I hope it works. My other thought was maybe if I PM'd you the specialty lab that I used, they might know of a comparable lab in another state? It's a long-shot but sometimes labs know about other labs.

I am also going to have to pretend mine is a kit. Going to get the tube myself , will make sure I print out instructions that look official, will prepay for a label that i enclose in "kit". NOt sure yet if i will fashion a box. I have a kit-like box from Ubiome, but not sure if that will make things worse and confuse the matter.

For whatever reason, the lab I used did not require a kit b/c I had pretty detailed instructions from Cell Trend and Dr. Heidecke. The note from my doctor just stated that he authorized the blood draw for the test (and they would not have drawn the blood without the note) but they told me that some states do not even require a note. CA does but some do not per this lab.

I would think using a kit that says "Ubiome" would confuse them but I could be wrong. Once I told them they needed the Gold tube and to centrifuge the blood (per Cell Trend) they said this was no problem.

I have encountered a new hurdle. They say once blood is centrifuged it needs to be held upright and posting it to germany will ruin it. Is this right? If so how did the others in this thread send theirs?

However the lab packed it in the Fedex Clinical Pack was what Cell Trend needed (but I did not see this part and have no idea re: the tube needing to be held upright, etc). I had no idea how rare these specialty labs must be and am sorry to hear about all of the obstacles you guys are encountering.

 

[sb4]

I'm perplexed with how difficult it is to get my blood drawn and centrifuged. There are 2 private hospitals both have now refused after several long phone conversations. The latest reason is they don't have equipment for preparing the blood for travel as the tests they do are in house. Any ideas?

 

[Gingergrrl]

I'm perplexed with how difficult it is to get my blood drawn and centrifuged. There are 2 private hospitals both have now refused after several long phone conversations. The latest reason is they don't have equipment for preparing the blood for travel as the tests they do are in house. Any ideas?

Are there any specialty labs in your area? I know the hospitals near me would never have done this either and my only option was a private lab. I wonder if you called Cell Trend if they could recommend a lab or how to proceed?

 

[sb4]

Are there any specialty labs in your area? I know the hospitals near me would never have done this either and my only option was a private lab. I wonder if you called Cell Trend if they could recommend a lab or how to proceed?

I'm not sure if there are private labs in sheffield that aren't part of hospitals, maybe someone knows otherwise ?

 

[Gingergrrl]

I'm not sure if there are private labs in sheffield that aren't part of hospitals, maybe someone knows otherwise ?

No idea but hopefully someone in your area might know.

 

[keenly]

I'm perplexed with how difficult it is to get my blood drawn and centrifuged. There are 2 private hospitals both have now refused after several long phone conversations. The latest reason is they don't have equipment for preparing the blood for travel as the tests they do are in house. Any ideas?

I am in Manchester and want to have this done. My sister is a nurse, but this needs a lab, right?

Nobody in the UK would provide treatment for the results anyway, would they?

 

[sb4]

I am in Manchester and want to have this done. My sister is a nurse, but this needs a lab, right?

Nobody in the UK would provide treatment for the results anyway, would they?

After great difficulty today I have sent my serum off, still expecting something to fuck up though.

I basically convinced a private hospital called BMI by talking several times with the head blood spinner dude. I had to get a letter from doc, and a gold topped blood tube from a nurse.

I would advise calling private hospitals and reading out the instructions on the website to the relevant person.

As for treatment you could ask to be referred to immunologist if results are positive but more importantly you can use the info to treat yourself.

 

[Gingergrrl]

After great difficulty today I have sent my serum off, still expecting something to fuck up though.

Good for you @sb4 for not giving up and I'm sending good thoughts that no one F's it up and your blood makes it to Cell Trend!

 

[Strawberry]

Thought I should do a quick update. I had sat on this for nearly 3 months, but finally got it complete today. The lab wasn't initially going to perform the test for me, but may have changed his mind when he saw my gears spinning 100 miles per hour in the corner. Thankfully, I had a normal "CBC" blood test slip from my local Dr also, so they decided to do both draws for me. *whew* Standing at the FedEx nearly killed me, and I had to sit in my car for a while with my legs up level with my body. I will crash in 48 hours... But its done. On its way to Germany. Success!

Since the lab gave me such grief at first, I asked if there is something I can do to make it easier if I have to get the Mayo test ran also. Sure makes this difficult to do when I have to jump through hoops to have my blood drawn! I want the answers, but this is ridiculously hard on me. I may quit the testing that has been ordered and just wait for this blood thing that Ben had done the other day at Stanford. I should ask Dr K if that is a possibility for me also, although that would mean a flight and hotel. Not up to that for a while.

 

[sb4]

Sent blood on tuesday to be there thursday. Wednesday , check tracker , still in depot at rotherham. Okay maybe they will send it overnight. Check tracker this morning , thursday , still sitting at depot in rotherham. Had to ring them up where they said they had missed it and it should get there for friday , when? I don't know.

It never ends

 

[Strawberry]

@sb4 That is really odd that your package is sitting in the depot. Mine has been delivered, although I shipped from the west coast US Tuesday morning. Was it marked as human blood? That is the only reason I could think that it would be held.