Celltrend Results - I am very happy

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Hey all,

Just got my celltrend blood test results back and I am positive for 6 out of 11 tests.

Anti AT1R Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 59.4 (positive)

Anti ETAR Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 60.7 (positive)

Anti a-1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 11.4 (positive)

anti-Muscarinic Cholinergic Receptor 2 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 18.2 (positive)

anti-Muscarinic Cholinergic Receptor 3 - Antibodies <6.0 U/ml: negative 6.0 – 10.0 U/ml: at risk > 10.0 U/ml: positive 16.3 (positive)

anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk > 7.0 U/ml: positive 47.6 (positive)

Very pleased that I have something solid and evidence to my dysautonomia and CFS symptoms. My next step, no idea exactly but trying to get to see a specialist in autoimmune diseases and possible talk about IVIG.

Wow, so many answers could be answered from such a simple set of tests.

- Andy
 
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I understand your feelings. Glad to hear that you have some answers.

Did you need a doctor order to send with your blood sample?
Do you already know a doctor who is familiar with this test?

I'd like to do this test, too. Probably I won't find anybody who will recognize this test in my hometown so I'm not sure what to do.
 

Gingergrrl

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Just got my celltrend blood test results back and I am positive for 6 out of 11 tests.
I am glad it worked out and you were able to do the testing. I was positive for 7/9 on Cell Trend in 2016 (before they offered eleven tests). I will be doing all 11 tests in Sept to see where my autoantibodies are now, which includes the two new ones and see if I am positive for them.

Very pleased that I have something solid and evidence to my dysautonomia and CFS symptoms. My next step, no idea exactly but trying to get to see a specialist in autoimmune diseases and possible talk about IVIG.
I agree, it is very helpful info to have and am hoping you will find a specialist to discuss IVIG or other treatment options. What area do you live in?

Wow, so many answers could be answered from such a simple set of tests.
I agree.

Did you need a doctor order to send with your blood sample?
Are you in the U.S.? I think it may vary from state to state but in my state, I was required to provide a doctor's note for the blood draw from a specialty lab (but nothing beyond that). I called the lab in advance to see if they could do what was needed. My doctor now has a kit for the Cell Trend testing but he did not have this when I did the testing in 2016.
 
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I understand your feelings. Glad to hear that you have some answers.

Did you need a doctor order to send with your blood sample?
Do you already know a doctor who is familiar with this test?

I'd like to do this test, too. Probably I won't find anybody who will recognize this test in my hometown so I'm not sure what to do.
No and no, did it all privately, just paid someone to take my blood and centrifuge it then sent it off.

@Gingergrrl thanks :), I am not too sure how much the A-1 receptor results are as they are only 4.2 points above what is classed as abnormal, but I am going to re-do all the tests in 6 months, I believe I was having a good day so maybe my antibody levels were lower than usual? Do you think 11.4 would be a high enough value to think they are having a negative effect?

As clearly with the Muscuranic and AT1R receptors etc, they are huuuge ranges and can't doubt they are causing a lot of my symtpoms

But them with the very high numbers are surely indicative of my symptoms, especially with so many positive too.

I just wonder what other tests I should have, I am going to push for anti phospholipid syndrome testing and a few others, any you can think of that would go well with testing for autoimmune POTS?
 
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junkcrap50

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I will be doing all 11 tests in Sept to see where my autoantibodies are now, plus do the two new ones and see if I am positive for them.
Are you currently or will you be on any autoimmune / rheumatology drugs when you retest your autoantibodies? I know you've been doing IVIG and have had success. But does anyone how do doctors normally retest autoantibodies after having prescribed autoimmune drugs?

I would like to test my autoantibodies using Celltrend, but have been on Plaquenil for sometime.
 

crypt0cu1t

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Congrats man! I also tested positive for a few antibodies and autoimmune markers (AChR binding, Salivary Protein 1, high white blood cells, high esr, high crp)

I want ti do the celltrend and cunningham panel so bad as both my doctors suspect a form of autoimmune encephalitis. How much did the panel cost you?

Have you ever done the Mayo ENS1, PAVAL, Cyrex array 5 or quest autoimmune neurology panels?
 

Gingergrrl

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@Gingergrrl thanks :), I am not too sure how much the A-1 receptor results are as they are only 4.2 points above what is classed as abnormal, but I am going to re-do all the tests in 6 months, I believe I was having a good day so maybe my antibody levels were lower than usual?
Are you going to re-do the test in six months after having treatment or re-do it without any treatment to see if you get similar results back the second time? I am not sure that you having a good day vs. bad day (on the day of the blood draw) would change the autoantibody levels found (but others might know more about this than I do).

Do you think 11.4 would be a high enough value to think they are having a negative effect?
I truly have no idea. I know re: the calcium channel autoantibody that I have, some Neuros have said that the level does not correlate with the symptoms, meaning that someone could have a low level but very severe symptoms and another person could have a high level and very minor symptoms. But I am not sure if this also applies to the Cell Trend autoantibodies (and I am also not even sure that all Neuros agree on this re: the calcium channel autoantibodies).

As clearly with the Muscuranic and AT1R receptors etc, they are huuuge ranges and can't doubt they are causing a lot of my symtpoms
I would assume that they are causing symptoms, too.

I just wonder what other tests I should have, I am going to push for anti phospholipid syndrome testing and a few others, any you can think of that would go well with testing for autoimmune POTS?
If you are planning to do IVIG, especially high dose IVIG for autoimmunity, I would do the anti phospholipid panel and make sure it is negative (b/c if positive, you are at a much higher risk of getting a blood clot from IVIG). I think another useful panel would be one of the autoimmune panels from Mayo like DYS1 or PAVAL.

Thanks @andybonse and @Gingergrrl. I'm from US. I'll call a lab to see if they can draw blood without a doctor's order.
I think it varies per state but in my state, I was able to go to a specialty lab with the instructions from Cell Trend but required a doctor's note for the actual blood draw.

Are you currently or will you be on any autoimmune / rheumatology drugs when you retest your autoantibodies? I know you've been doing IVIG and have had success. But does anyone how do doctors normally retest autoantibodies after having prescribed autoimmune drugs?
I am now completely done with IVIG and will not be re-testing autoantibodies until Sept when there has been at least an eight week minimum from my last IVIG. Your autoantibodies are never truly accurate after having IVIG but there is nothing I can do about that and waiting eight weeks is a long enough period of time per both of my doctors.

I will still be doing Rituximab (next infusion which is #6 is tomorrow morning) but my doctor said that will not have the potential to provide false positives like IVIG could. Rituximab keeps my B-cells at zero so my autoantibody levels should all be lower now (unless something has a false positive from prior IVIG). All of this is me paraphrasing and don't quote me on anything and please ask your own doctor!

I would like to test my autoantibodies using Celltrend, but have been on Plaquenil for sometime.
I have never taken Plaquenil and am not familiar with how it affects autoantibodies. Are you taking it for Sjogrens?

I want ti do the celltrend and cunningham panel so bad as both my doctors suspect a form of autoimmune encephalitis. How much did the panel cost you?
I don't think the Cell Trend panel would give you any information re: autoimmune encephalitis and I have never done the Cunningham Panel (and can't remember what it tests)? I'm not sure if you are asking me how much Cell Trend costs (or asking someone else?) but when I did it in 2016, it was somewhere between $500 and $600 (I can't remember the exact amount) if you include the blood draw at specialty lab, nine Cell Trend tests, Fedex Overnight International cold pack box for shipping, and bank transfer into Euros plus bank fee. A lot of this is streamlined now (and Center for Complex Diseases has a kit for doing Cell Trend test and I believe you can pay with PayPal and don't have to do the bank transfer into Euros, etc). I can tell you exactly what it costs when I re-do it in Sept.

Have you ever done the Mayo ENS1, PAVAL, Cyrex array 5 or quest autoimmune neurology panels?
Also not sure if you are asking me but I have done PAVAL from Mayo in 2016 (but not the others you mentioned). When I do the tests in Sept, I will be doing the DYS1 Panel from Mayo instead of PAVAL b/c it also includes anti GAD65 and we want to test if I remain positive for that one, too.
 
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@Gingergrrl I've just remembered something actually,

With the Anti AT1R Antibodies being high and positive, a few years ago I did a Angiotensin ii blood test.

It was 8 and the range is 20-40 so that's really low. So from what I've read I think the AT1R AB's have a agonistic effect activating the receptor, which would explain why the body isn't signalling to make more angiotensin ii?

Of course these are just my ideas, I need to find a doctor who has the time to sit down and explore all of this properly. Everyone I talk to seems that it blows their mind lol.

My potassium levels were always lowish too, then I started fludrocortisone which dropped them big time so had to have a supplement.

Somethings definitely going on and the pieces of the puzzle are adding up, I think IVIG is in my future when I find the right doctor, I'm in the UK so finding one is going to be difficult I bet.

Andy
 

Gingergrrl

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@Gingergrrl I've just remembered something actually, With the Anti AT1R Antibodies being high and positive, a few years ago I did a Angiotensin ii blood test. It was 8 and the range is 20-40 so that's really low. So from what I've read I think the AT1R AB's have a agonistic effect activating the receptor, which would explain why the body isn't signalling to make more angiotensin ii? Of course these are just my ideas, I need to find a doctor who has the time to sit down and explore all of this properly. Everyone I talk to seems that it blows their mind lol.
I wish I understood all of this better so I could give a more intelligent reply! When I did the Cell Trend testing in 2016, there were only nine autoantibody tests and they did not yet have the angiotensin test. I will be doing all 11 tests in Sept so we will see if I have the anti AT1R Ab or not. Although it is possible that I did have it at some time but now test negative from IVIG and Rituximab. But at least I can compare the other nine tests to my levels in 2016.

My potassium levels were always lowish too, then I started fludrocortisone which dropped them big time so had to have a supplement.
My Potassium level is also always low (without taking a prescription supplement with 20 MEQ per day called Klor-Con). I tried Florinef in 2014 but did not do well with it at all and had to stop. Does low Potassium relate to that autoantibody (or am I totally misunderstanding)?

Somethings definitely going on and the pieces of the puzzle are adding up, I think IVIG is in my future when I find the right doctor, I'm in the UK so finding one is going to be difficult I bet.
Good luck and I hope you are able to try IVIG!
 

StarChild56

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I would like to test my autoantibodies using Celltrend, but have been on Plaquenil for sometime.
I realize I am very late, but I have been on Plaquenil for a little over a month. Does this mean that taking tests for autoantibodies (like Celltrend) will not be accurate?
 

junkcrap50

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I realize I am very late, but I have been on Plaquenil for a little over a month. Does this mean that taking tests for autoantibodies (like Celltrend) will not be accurate?
I don't know. I was trying to find a question on here. Personally, I would think that is correct. Since plaquenil is supposed to treat rheumatoid arthritis, lupus, and other autoimmune diseases, I suspect it would lower autoantibodies. But I don't know the mechanism, so I don't know for sure.

In my brief googling just right now searching "does plaquenil decrease antibodies", yes. It looks like it will lower autoantibodies. From https://thyroidpharmacist.com/articles/part-2-mechanisms-reduce-thyroid-antibodies/
Plaquenil reduces lymphocytes, the production of auto-antibodies, immune mediators, cytokines, and NK cell activity; and inhibits antigens presenting to B cells, dendritic cells and monocytes.

In one study, treatment with plaquenil significantly decreased the DNA-hydrolyzing activity of thyroid antibodies. Patients with hypothyroidism have a higher level of DNA-hydrolyzing IgG antibodies. Usage of plaquenil resulted in a reduction in these antibodies, as well as improvements in thyroid hormone production and elevated functional activity of the thyroid gland. Plaquenil also improved the clinical state of the patients.

Plaquenil is currently in clinical trial relating to reducing thyroid antibodies, so I will update you all later on the findings.
However, @Forçe e Honra , plaquenil does take several months (up to 6 months) to see the full benefits of the drug. Though, some improvement can be seen earlier. So if it's just a month on it, you probably could get autoantibodies tested and be alright (ask your doctor to be sure). But better to be safe and be off it before testing autoantibodies to be totally accurate, because you wouldn't nkow how high they'd be if you never were on plaquenil.
 

StarChild56

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However, @Forçe e Honra , plaquenil does take several months (up to 6 months) to see the full benefits of the drug. Though, some improvement can be seen earlier. So if it's just a month on it, you probably could get autoantibodies tested and be alright (ask your doctor to be sure). But better to be safe and be off it before testing autoantibodies to be totally accurate, because you wouldn't nkow how high they'd be if you never were on plaquenil.
Thank you, I searched quite unsuccessfully on Google.

I did my CellTrend some months ago before I began the Plaquenil, as well as my early SS screening. I was just wondering for the future. Also wondering about things like ANA and RA factor, those types of things. I will just have to discuss with my doctor when the time comes up. :)
 
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@Forçe e Honra Did you have anything positive?

@andybonse I just sent off my blood yesterday. I'm looking around now in various places to see what other ME/CFS people have ordered this test. I had read about these antibodies being found, but didn't know that I could order it. I did some more searching and found the lab.

I know something in wrong with my Acetacholine receptors. I found out because I'm very sensitive to any plants that have ACh esterase inhibitors. Eggs too, which are very high in choline. It gives me insomnia and makes me very stimulated. See the list of foods: https://sites.google.com/site/annerwright/avoiding-cholinesterase-inhibitors

My cardiologist dysautonomia doctor also prescribed me Mestinon which is a ACh Esterase inhibitor. It is the same drug given to people with Myesthenia Gravis, which is caused by antibodies to the Nicotinic ACh receptors. Only problem is that Labcorp doesn't offer the Muscarinic version, so we will show negative on that test.

I really how I get some positive results. I hope my body hasn't stopped producing them if it was producing them because I still have symptoms.
 

StarChild56

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Did you have anything positive?
I'm sorry I have not been around much.

Yes I did have one positive and one at risk.
Positive:
Anti a-1-
adrenergic
Antibodies

At risk for:
anti-Muscarinic
Cholinergic
Receptor 4 -
Antibodies

I took it last year? Or very early this year before the additional antibodies testing was available.


ETA: Weirdly, I'd been on Plaquenil for a month or so and took the Early SS test and tested HIGHER on one antibody, negative on a previously positive and newly positive for yet another antibody. My specialist said that is not unexpected that they can "jump around". But this is specifically about the early SS.
 
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Gingergrrl

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Unfortunately my blood was held up in customs in Germany and went bad. I am trying to work out with FedEx why this happened so it won't happen again and get a refund.
I am so sorry that happened to you! I think we were discussing this in another thread (which I will find later!) but since I saw it here, I wanted to reply. Did you use a "Fedex Clinical Pack" and ship with "Fedex Overnight International"? It was expensive and cost me $107 (for the shipping) but it did arrive to Cell Trend in Germany intact in approx 40 hours from Los Angeles. The instructions that I had said to send an E-mail to Cell Trend with the Fedex tracking #, my name, etc, to alert them that it was on the way and expected date of arrival.

This is after the phlebotomist already messed up by not reading the instructions and didn't centrifuge my blood the first time.
The instructions that I had said for the blood to clot for 15 min, and then to spin for 15 min, before transferring the serum to the transport tube (all done by the phlebotomist of course, not by me)! The home phlebotomist that I had was excellent and said she had done millions of different kits (and she understood the instructions better than I did and I had read through them twice)! She said it was ideal to do more than 15 min and I trusted her completely and followed her lead.
 
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@Gingergrrl Yes, I used the official FedEx Clinical pak and I told the clerk at FedEx it was my blood and I asked for the exact shipping type that was on the instruction, which is called priority international. They don't actually have overnight international to that location. It cost $130. I sent on Tuesday and they said it will arrive on Monday. I sent CellTrend an email with the tracking number saying I sent it on Tuesday and that it was expected to arrive on Thursday. I have not gotten a response from them yet.

Did the clerk as you the value of the contents and whether it was new or used and give you a commercial invoice?

I suspected that this was incorrect at the time and explained it was not a product. I filed a case to ask for a refund with FedEx International and also ask them to find out why this happened. I then called the manager at the FedEx Ship Center and explained what happened. He said this was correct way to ship, so I don't know what went wrong. Maybe the description was not enough. On the invoice it just says "SERUM, NON-HAZ - serums" and lists the value at $40. The manager confirmed that the value is not of the product, but for my protection because it is insured. It would cost me about $40 to have the blood drawn again, which is why I picked that.

What home test company did you use? I have heard of that once because I got a genetic test and they offered a home service to draw the blood. I think it was actually associated with LabCorp or something like a subsidiary they acquired.
 
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