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

[sb4]

@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.

Apparently they just "missed it". It's marked as blood sample and is sitting in german customs now. I really hope it gets cleared soon as I should imagine it needs to be there this morning...

 

[sb4]

Well its still in a depot in Germany and it's now 5pm over there. I think it's ruined. I honestly can't believe it.

 

[Gingergrrl]

Well its still in a depot in Germany and it's now 5pm over there. I think it's ruined. I honestly can't believe it.

What a bummer! Do you know @sb4 if the blood sample finally made it to Cell Trend or if it's still sitting in the depot in Germany? If you used the Fedex Clinical Pack, Cell Trend told me it is okay if it takes 48-72 hours (and does not actually have to arrive in 24 hrs which would have been impossible in my case). After 72 hours, I am not sure if it is still okay but you could call or e-mail Cell Trend to ask them.

 

[sb4]

What a bummer! Do you know @sb4 if the blood sample finally made it to Cell Trend or if it's still sitting in the depot in Germany? If you used the Fedex Clinical Pack, Cell Trend told me it is okay if it takes 48-72 hours (and does not actually have to arrive in 24 hrs which would have been impossible in my case). After 72 hours, I am not sure if it is still okay but you could call or e-mail Cell Trend to ask them.

The next day the tracker updated saying it was delivered friday at 3/4pm. So hopefully it was enough time for them to do something with it.
I have tried email but I supect they are busy. I will have to wait and see...

 

[Gingergrrl]

The next day the tracker updated saying it was delivered friday at 3/4pm. So hopefully it was enough time for them to do something with it.

That is great and am hoping it got there in enough time! Keep us posted.

 

[Aidenwillson]

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?

 

[Gingergrrl]

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?

I am not certain of the answer to this question but when I gave the instructions from Cell Trend to the specialty lab who drew the blood and shipped it to Germany in the Fedex clinical pack, I can only assume that the pack held it in an upright position. I did not ask this specific question but I know that my blood sample arrived intact to Cell Trend so can only make this assumption.

If you can find a place to ship it in the Fedex Clinical Pack, it should be okay.

 

[sb4]

I am not certain of the answer to this question but when I gave the instructions from Cell Trend to the specialty lab who drew the blood and shipped it to Germany in the Fedex clinical pack, I can only assume that the pack held it in an upright position. I did not ask this specific question but I know that my blood sample arrived intact to Cell Trend so can only make this assumption.

If you can find a place to ship it in the Fedex Clinical Pack, it should be okay.

I think something went wrong with that post as it is word for word my earlier post.

The answer is gold topped tubes with gel inside means it doesn't need to be upright

 

[Gingergrrl]

I think something went wrong with that post as it is word for word my earlier post.

The answer is gold topped tubes with gel inside means it doesn't need to be upright

How weird and am not sure if I understand what you mean! I was replying to your post but did not copy it from anywhere else. I knew from Cell Trend that the gold topped tube was required but I did not know why (and now I do)!

 

[sb4]

How weird and am not sure if I understand what you mean! I was replying to your post but did not copy it from anywhere else. I knew from Cell Trend that the gold topped tube was required but I did not know why (and now I do)!

haha, to add to the confusion i was replying to the guy who you replied to

 

[sb4]

Well I've got my results back so it got there after all.

ADRENERGIC
Beta1 = 1.5 (>15) negative
Beta2 = 0.5 (>8-14) negative

MUSCARINIC
M1 = 1.5 (>9) negative
M2 = 1.1 (>9) negative
M3 = 4.7 (>6-10) negative
M4 = 3.7 (>5-7) negative
M5 = 0.8 (>14.2) negative

As you can see all negative which is disappointing however there is something interesting.

All my antibodies are low, around 10% of the threshold value, except M3 (47% +78% at risk) and M4 (52% +74% at risk).

Now correct me if I'm wrong but these receptors are activated by muscarin/acetylcholine meaning that my body can't simply pump out more muscarin to help M3/4 without giving too much to the other receptors. So these will be stimulated less in me.

Interestingly some of my big problems are POTS, gastroparesis, and dry mouth. Well M3 is responsible for salivation, and smooth muscle contraction (stomach, intestines, blood vessels). This goes a fair way to explain these symptoms.

Furthermore one of those studies found paitients antibodies who where in normal range dropped with treatment resulting in symptoms improvement.

This is not enough to suggest that antibodies are the cause of all my problems, I think something else is at play, however it could mean I could significantly lessen some symptoms by sorting the antibodies issues out. I just wish I had had the money to test alpha receptors.

What do you think @Lolinda ?

 

[Gingergrrl]

@sb4 Just curious, did you do all nine of the tests or just the seven that you posted?

A good friend of mine just did the tests and was negative on all nine.

So far I have not found anyone else like me who is positive on seven of the nine but I truly suspect this is why I am having such an amazing response to high dose IVIG as it is reducing these Auto-Abs (plus the others that I test positive on from Mayo).

I'm at IVIG now and when I first started IVIG last July, I could not pull the IV poll over the raised bump in bathroom floor to save my life and now I can do it easily w/no effort. The improvement to my muscle strength is beyond words and I know it relates to these antibodies.

 

[sb4]

@sb4 Just curious, did you do all nine of the tests or just the seven that you posted?

A good friend of mine just did the tests and was negative on all nine.

So far I have not found anyone else like me who is positive on seven of the nine but I truly suspect this is why I am having such an amazing response to high dose IVIG as it is reducing these Auto-Abs (plus the others that I test positive on from Mayo).

I'm at IVIG now and when I first started IVIG last July, I could not pull the IV poll over the raised bump in bathroom floor to save my life and now I can do it easily w/no effort. The improvement to my muscle strength is beyond words and I know it relates to these antibodies.

This is great news.

I only did 7 as the alpha ones where £200.

How is your vitD?

 

[Gingergrrl]

This is great news.I only did 7 as the alpha ones where £200. How is your vitD?

How weird and I wonder if they raised the price or if different in the U.K.? My Vit D is consistently low even though I take 5000 IU's per day and might go back to the 10,000 IU's. Why do you ask re: Vit D?

 

[sb4]

How weird and I wonder if they raised the price or if different in the U.K.? My Vit D is consistently low even though I take 5000 IU's per day and might go back to the 10,000 IU's. Why do you ask re: Vit D?

It's very beneficial for the immune system.

If you can get it from the sun it's far better than pill.

 

[Gingergrrl]

It's very beneficial for the immune system. If you can get it from the sun it's far better than pill.

For many months I was allergic to the sun but am not sure if this is still the case. Will eventually test it out again. Thanks!

 

[Strawberry]

Here are my results:

ADRENERGIC
Alpha1 = 11.1 (.7.0) positive
Alpha2 = 9.2 (.15.0) negative
Beta1 = 5.0 (>15) negative
Beta2 = 7.8 (>8-14) negative

MUSCARINIC
M1 = 5.0 (>9) negative
M2 = 7.1 (>9) negative
M3 = 8.9 (>6-10) at risk (???)
M4 = 8.9 (>5-7) positive
M5 = 4.0 (>14.2) negative

I have no clue what these mean, and will wait somewhat patiently (or not) for Dr K to let me know.

 

[Gingergrrl]

I have no clue what these mean, and will wait somewhat patiently (or not) for Dr K to let me know.

@Strawberry I'd love to discuss w/you (by PM or wherever best for you!) after you talk to Dr. K but suspect your plan will be different than mine since you are positive for 2 Auto-Abs vs. seven (but I could be wrong). For me it confirmed Autoimmune POTS, why I had so much muscle weakness, and added to my overall diagnosis of "Autoimmune Chaos" LOL.

 

[Lolinda]

Well I've got my results back so it got there after all.

ADRENERGIC
Beta1 = 1.5 (>15) negative
Beta2 = 0.5 (>8-14) negative

MUSCARINIC
M1 = 1.5 (>9) negative
M2 = 1.1 (>9) negative
M3 = 4.7 (>6-10) negative
M4 = 3.7 (>5-7) negative
M5 = 0.8 (>14.2) negative

As you can see all negative which is disappointing however there is something interesting.

All my antibodies are low, around 10% of the threshold value, except M3 (47% +78% at risk) and M4 (52% +74% at risk).

Now correct me if I'm wrong but these receptors are activated by muscarin/acetylcholine meaning that my body can't simply pump out more muscarin to help M3/4 without giving too much to the other receptors. So these will be stimulated less in me.

Interestingly some of my big problems are POTS, gastroparesis, and dry mouth. Well M3 is responsible for salivation, and smooth muscle contraction (stomach, intestines, blood vessels). This goes a fair way to explain these symptoms.

Furthermore one of those studies found paitients antibodies who where in normal range dropped with treatment resulting in symptoms improvement.

This is not enough to suggest that antibodies are the cause of all my problems, I think something else is at play, however it could mean I could significantly lessen some symptoms by sorting the antibodies issues out. I just wish I had had the money to test alpha receptors.

What do you think @Lolinda ?

As for POTS, the single most important receptor antibody is A1. The A1 receptor is what you need for standing up: If you stand up, you want your vessels to constrict a lot so the blood does not pool downwards. This is achieved by your nerves that go to the vessels produce noradrenalin. This noradrenalin activates the A1 receptor and this activates the constriction. So, the bad news is that your test results neither confirm nor exclude an "autoimmune POTS". The good news is that you can quite safely leave out the A2.
(The other receptors are not unimportant, for example beta receptors make the heart beat faster. This could be a cause for POTS, because the trick is: while the A1 antibodies are deactivating the A1 receptor, the B1 for example is activating. These and more details are described on the research thread. All in all, good you did the other things, but A1 is the main player)

If you want to find out about autoimmune issues causing your dry mouth, have you tested for Sjörgen's? Testing for that is covered by every health insurance. Read Wikipedia before you go to the immunologist, so you can present exactly those of your symptoms that match the texbook
ForSjörgen, the Wikipedia entry is really good for Symptoms.
(This is my method to get tests prescribed. As simple as it is, it helps wonders The thing is: at the university, we were always laughing at how stupid medical students are. And now we get treated by these not so smart guys.. . While I met wonderful doctors whom I greatly appreciate, the truth is that even doctors say that studying medicine is by and large a brainless memory exercise: remember symptoms for a million of diseases.
➞ We need to feed their brains in the way they learnt to function: tell them exactly the textbook symptoms! I always stick to the truth with symptoms but present only the textbook symptoms and exactly in the way they are described. Wikipedia, WebMD and the Mayo Clinic I find quick and easyread means to prepare and get as many tests as possible done.

I wish you good luck from my heart! - doubly so as I know how the reputation of UK health insurance system is...

 

[sb4]

@Lolinda I am really regretting not doing A1, I firgured if others came up positive then I can assume that would thanks to mirtazapines effects on me. I was foolish.

I have already had sjgorens come back negative.

I think I will continue to treat myself as if I have autoimmunity whilst futilely asking nhs for more antibodies tests

Dopamine D2 receptor
Mu-opioid receptor
Serotonin 5-HT1A receptor
Serotonin (neurotransmitter)

Microtubule-associated protein 2
Phosphatidylinositol
Insoluble cellular antigens
Cardiolipin
Heat shock protein HSP60
Anti-citrullinated protein

Might throw that at them and see what sticks.