CellTrend GmbH Testing - Dr. Rose Dotson, Milwaukee (Grafton), WI

[stephaniejo0684]

Hello Everyone! I am wondering if anyone has had their blood samples sent to Germany to be tested by CellTrend. My neurologist, Dr. Rose Dotson (Aurora Medical Center Grafton, Grafton, WI) is a specialist in Dysautonomia and POTS. She is the best in the Midwest. I am incredibly lucky to be her patient. I received my lab results this week and am wondering if anyone else has had any testing done to compare notes.

Hope to hear from someone soon!! :-)

[Weary]

There was a discussion i think last week started on this topic that you might also be interested in.

What were your results?

Also curious if Dotson thought the lab was reliable, including with blood shipped overseas.

[p8d]

@stephaniejo0684 I am one of Dr Dotson’s patients also.  I sent my serum to Celltrend a few months ago.  I have one positive result.  I had way more problems with the lab and shipping than anything else.  I mean stupid bad.  Please PM me and I can fill you in on how to get all of it done.  I see Mary, Dr Dotson’s NP.  She is beyond amazing.

[Guest KiminOrlando]

I spoke to my dysautonomia specialist about this and he told me not to waste my money on this test as it was unreliable and unproven. What he said was there is a similar test that is more reliable done by Mayo. I don't think you have to go to Mayo to get it. The local lab can draw, prepare and ship to Mayo for processing. He said of all of the tests done with Mayo, only one was positive, so the NIH isn't finding statistical relevance. They are looking for people with more positive results, but only from the Mayo test / protocol. I think he also said the reagent for processing this test is on backorder, so it isn't easy to get it. It also only applies to people with damaged ganglia, I think that is what he said, so of the dysautonomia population, only a small percentage would even warrant testing. He told me he discourages everyone from this test and that typically the provider who writes the script for this test is compensated by the company. It would be an interesting question to ask before paying out of pocket for this test.

Take that for whatever you think it is worth. Evidently, this was discussed at the last dysautonomia conference for physicians. He attends every year and keeps up to date regularly with the NIH.

Oh, and perfectly healthy people sent off their samples to this company for testing and also recieved positive results. They were used as 'controls' to see what happened. The 'controls' were positive. Does the test not work or does the blood not survive the shipping process? I don't know the answer to that.

I just wanted to post a contrarian view for your consideration. 

 

[Natops]

Following 

[Weary]

@kimin - that sounds like some of the same things I posted concerns about in a thread last week on CellTrend. There's quite alot of positives in "normal" people, plus found in other diseases that have nothing to do with dysautomia or POTS. Plus the ambiguity surrounding serum vs whole blood as shipped overseas was an issue.

Will be curious to hear more about the mayo test. Is it part of one or more of their AI neural panels? e.g. dysautonomia, or encephalitis, or paraneoplastic panels? I had one of them done; some of them are reflex tests only so when my ANNA was negative, some of the ones I wanted were not tested for. (which is too bad because somtimes one can be positive on the more specific test but not the general one). Also wondered if my sample even made it to mayo properly, let alone to another country.

[Guest KiminOrlando]

I don't know the answer to any of those questions. I wish I did. I've been to Mayo and don't know if I even got the test because I don't know the name of it. Hoping someone who knows more than me will start a thread.

[Clb75]

I had a mayo test done for the acetylcholine ganglionic receptor autoantibody. It’s usually found in AAG, but sometimes a small percentage of Pots people can have it. My limited understanding of the Mayo panel is that it tests for autoantibodies like this one and for those that are found in patients who are being treated for cancer, and have developed dysautonomia as a result of treatment. The antibodies being tested are different than the Cell trend test, and not specific to Pots like the Celltrend test is. 

Dr. Kem (University of Oklahoma), Dr. Raj and another doctor in Texas whose name I forgot have done research on all of the antibodies that the Celltrend test is testing for. They have found these in Pots patients but not in the control patients. Not sure how Celltrend came to be the only commercial lab that is offering this, but I agree that reliability and validity are important issues. 

[p8d]

@Clb75is correct.  Rose Dotson worked at Mayo for a number of years in their Dysautonomia clinic and routinely tests for their panel in all suspected dysautonomia patients along with all the other tests done at Mayo and elsewhere.  I have been tested twice on the Mayo panel, both negative.  I explicitly trust Dr Dotson and her team.  They are cautious and research new developments before doing treatments that are new.  They are in touch with Drs doing the research, Drs Kem, Raj and others.  They are contacting Dr Kem about my specific case because it is unusual before deciding on SQIG.  I completely agree it’s good to be cautious but In my case I am refractory to all the treatments we have tried and I have other autoimmune issues so it made sense to test.  

[andybonse]

I did the celltrend test and am positive for 6 out of 11 antibodies. Quite high on some of them too. 

 

Trying to move forward and seeing my pots specialist soon.