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

Jo86

Senior Member
Messages
197
Location
France
Hey Gingergrrl, meant I was going to call him up, not physically go there into his office, bad wording. - And I'm in France btw, tried changing in the control panel but it would let me, so I live in Qatar on this website, period !
The idea is definitely look at IVIG and Rifuximag (which he insures me is next to 0% serious risk, and is that risky mostly in cases treating Cell T), and also to try that Cunningham panel (in Oklahoma I believe). They've got a really nice panel of 5 similar to CellTrend lab tests concerning autoantibodies.

The major problem for me down the line right now isn't even spending the 1000 bucks on that new test, or even to weigh in whether I should try the rifuximab, it's how I'm going to get my hands on them (doctors here in France will NEVVERRRR prescribe that to me, they need the most drastic obvious cases to start giving their patients stuff) and then there's the money. The Rituxan apparently is like 10k for the one shot. Just burlesque numbers. It's apparently like half the price here, but still, I mean, fk, 5000€ for the one ?...

Difficult times...but thank God we're alive now and weren't born 5 years before. Medicinal technology is at a crossing road.
 

Gingergrrl

Senior Member
Messages
16,171
Hey Gingergrrl, meant I was going to call him up, not physically go there into his office, bad wording. - And I'm in France btw, tried changing in the control panel but it would let me, so I live in Qatar on this website, period !

Sorry I misunderstood and thought you were going to see him in person. Oh well... France/Qatar... either way it's great to chat w/you and PR is an international city LOL.

They've got a really nice panel of 5 similar to CellTrend lab tests concerning autoantibodies.

Am not familiar with this panel (only with cell trend) so cannot comment on it.

The Rituxan apparently is like 10k for the one shot. Just burlesque numbers. It's apparently like half the price here, but still, I mean, fk, 5000€ for the one ?...

My plan is to get RTX approved by my insurance and we are aiming for May. I can't see it happening sooner than that which is okay b/c I am approved for IVIG until then and plan to finish it out. Can't say too much re: insurance publicly since this is still a work in progress.

Difficult times...but thank God we're alive now and weren't born 5 years before. Medicinal technology is at a crossing road.

Agreed and best wishes to you.
 

Jo86

Senior Member
Messages
197
Location
France
Thanks ! Just one thing. I apologize if you hinted at this somewhere or outright revealed the answer to it, but how are you planning on justifying the prescribing of those two meds (IVIG, RTX) over there in the U.S. ? Like, what medical diagnosis to justify using those powerful agents ?
 

Gingergrrl

Senior Member
Messages
16,171
Thanks ! Just one thing. I apologize if you hinted at this somewhere or outright revealed the answer to it, but how are you planning on justifying the prescribing of those two meds (IVIG, RTX) over there in the U.S. ? Like, what medical diagnosis to justify using those powerful agents ?

IVIG was first approved last July (low dose) and then we slowly increased to high dose by Dec. It was approved for a combination of autoimmune disease/ autoantibodies, Autonomic Dysfunction & POTS, Mast Cell Disease, neuromuscular and breathing weakness.

Have had improvements in all areas but not to the level that we believe can be achieved by RTX. My MCAS went into remission so I can tolerate normal foods/smells without allergic reactions which has been major. Also had big improvements in muscle strength and 100% elimination of my exaggerated startle reflex.

But my ultimate goal to walk w/o wheelchair we believe will require eliminating B-Cells Autoantibodies at production level (beyond what IVIG can do). Ideally I'd like to overlap the IVIG & RTX but don't know if this will be possible.

Basically it's for autoimmune mediated disease (plus other stuff thrown in making it more complex). Hope that helps!
 
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Jo86

Senior Member
Messages
197
Location
France
Well God bless Gingergrrl, definitely sounds good so far.
Yeah "exaggerated startle reflex", totally see what you're referring to, we all seem to have that, us of the CFS/autoimmune etc.. club.

So just to confirm, regular medical doctors from ordinary hospitals there on the basis of obscure lab tests from Celltrend and such particular labs and 'experimental' diagnoses put you on the IVIG, and are about to put you on RTX ? Or do you have more classic results showing up on conventional labs too ??..
 

Gingergrrl

Senior Member
Messages
16,171
Well God bless Gingergrrl, definitely sounds good so far.

Thank you @Jo86 and to you, too.

Yeah "exaggerated startle reflex", totally see what you're referring to, we all seem to have that, us of the CFS/autoimmune etc.. club.

It's so interesting b/c my startle reflex is completely gone from IVIG. It was so exaggerated that at one point we think I had a "startle seizure" from our fire alarm going off (many months ago). My husband and best friend found me on the floor basically non-responsive and I could not speak or make eye contact. When I came out of it, I had no memory of the incident. Ironically last weekend, the fire alarm went off in my apt and I was here w/my sister. Not only did I not have an exaggerated startle response, I literally had no response except annoyance (and concern if it was a real fire that I cannot get down the stairs in wheelchair if they shut off the elevators). She was stunned that I had no startle response and it scared her more than it phased me! I am certain that the IVIG has reduced the GAD65 Abs (which stop the conversion of glutamate to GABA). I cannot think of any other explanation but it is amazing to no longer have this startle response. Now if someone rings my doorbell or my dog barks, I am un-phased. Prior to IVIG, my reaction was like a shot of Epi to the heart and once lasted for 48 hrs.

So just to confirm, regular medical doctors from ordinary hospitals there on the basis of obscure lab tests from Celltrend and such particular labs and 'experimental' diagnoses put you on the IVIG, and are about to put you on RTX ? Or do you have more classic results showing up on conventional labs too ??..

I don't know if I would call them "regular medical doctors" but that might be b/c they are so special to me LOL. One is my doc from OMI and the other is my mast cell specialist. Both felt high dose IVIG was the best path for me given the sheer number of autoantibodies that I had combined with the positive ANA (1:160 speckled pattern) plus the severity of my autonomic symptoms (POTS and very low BP), failed TTT and QSART tests, breathing problems, muscle weakness to where I could not open a bottle or my front door, and allergic reactions/anaphylaxis. My MCAS doc uses IVIG very commonly with his mast cell patients and my main doc uses it commonly with his autoimmune patients. He also uses it for immune deficiency (but in my case it was for autoimmunity). We decided on IVIG once we learned I had the Calcium Channel autoantibody (prior to even doing the Cell Trend tests). I tested for autoantibodies at OMI, Quest, Stanford, Mayo, Cell Trend (blood sent to labs- not all in person!) and was positive no matter where the tests were done.

No Neuro (I saw three total) was even remotely interested in the Cell Trend tests and would not even look at them b/c they were not from the United States (which is ridiculous IMO). I've done them 2x and am positive for 7 of the 9 auto-abs both times. Plus GAD65 and the CA+ autoantibody and the two Hashimoto's Abs. The reason we are going to pursue RTX is b/c IVIG is a temporary solution and RTX could be permanent if the B-Cells grow back healthy. Or RTX could do nothing or it could even make me worse. But I am willing to take that risk. My quality of life was close to zero and it is so much better now from high dose IVIG. But IVIG involves 3 full days at infusion center every 3 weeks and eventually my insurance will cut this off vs. RTX is (potentially) a longer lasting solution.

Hoping this helps!
 

Jo86

Senior Member
Messages
197
Location
France
Thank you Gingergrrl, this is very insightful info indeed. Thank you for taking the time.
The problem for me is I just have the high anti-TPO thyroid anitbodies and the celltrend (2 positive, 2 at risk). The regular ANA autoimmune panel is totally regular, nothing positive. Doctors here in France need the most overwhelming evidence to take action and generally have no clue what the Celltrend tests are or come from. I'll need to travel for certain... the IVIG sounds very promising.

You also have the wheelchair element. Doctors look at me, and they just see some 30 yo guy who looks a bit lethargic and has difficulty keeping his focus as he speaks, they all of course think I'm a 'psychological case' as it will come as no surprise to anyone here - although my case is 10 years old and permanently worsening.

I'd suggest looking into this if you wish:
http://www.moleculeralabs.com/cunningham-panel-pandas-pans-testing/
 

Gingergrrl

Senior Member
Messages
16,171
Thank you Gingergrrl, this is very insightful info indeed. Thank you for taking the time.

No problem and glad if I can be of help.

The problem for me is I just have the high anti-TPO thyroid anitbodies and the celltrend (2 positive, 2 at risk).

Most people that I have compared to (probably close to 20-30 at this point) have between zero to four positive auto-abs on Cell Trend. I can't find anyone else with seven of the nine positive like me which makes me feel the tests are legit b/c they are not giving everyone the same results. My doctor feels it confirms that I have autoimmune POTS and pretty much autoimmune everything.

You also have the wheelchair element.

Believe me, I wish I didn't. I've been using the wheelchair for 2.5 years and I hate it although without it, I would be 100% housebound. With it, I can have a fairly normal life but I have no independence. The motorized chair allows me to move freely around my home and the manual chair allows me to go out (but someone has to push me in it, fold it and lift it into the trunk of car, etc). My dream is to reach a point that I do not have to use it. I have had unquestionable improvements but not yet to the level of being able to walk more than 20-25 feet total without the wheelchair.


I looked at it but it seems more geared toward psychiatric issues (unless I am not understanding it)? And even if tested positive for any of those auto-abs, it would not change my treatment plan to continue the high dose IVIG and (insurance pending) try RTX.
 

Jo86

Senior Member
Messages
197
Location
France
About your before-last section there, I'm not saying needing the help of a wheelchair is a desirable thing but I only mean to outline very generally how having a physical ailment that SHOWS can mean the difference. In countries like France, very strict and rigid and conventional, they'd require something obvious like I've stated before to put you on IVIG etc., I know it's very very easy to say, but, perhaps a blessing in disguise..

Like I said you're on the right track it seems and you've got the right mindset. Things like reading from you "unquestionable improvements" make my eyes big. The medicinal world is hitting a crossroad, and you know it, and it won't be long before we get the answers, and the right treatments, and you may already be on the right one already.

A perpetual spectator's standpoint gets you nowhere in our situations. We NEED to take action eventually.

I'll return with some info about the last part.
 

Jo86

Senior Member
Messages
197
Location
France
P.S.: I mean unless you've spontaneously morphed into a dog, and that avatar is actually a picture of you. In that case I'd say, well, I'm not totally sure about your case being on the right track.
 

Gingergrrl

Senior Member
Messages
16,171
About your before-last section there, I'm not saying needing the help of a wheelchair is a desirable thing but I only mean to outline very generally how having a physical ailment that SHOWS can mean the difference. In countries like France, very strict and rigid and conventional, they'd require something obvious like I've stated before to put you on IVIG etc., I know it's very very easy to say, but, perhaps a blessing in disguise..

@Jo86 I understood what you meant (and I hope you understood me, too)? I wish I could view the wheelchair as a blessing in disguise but it has been very challenging to not walk more than a few steps, drive, etc, for 2.5 yrs. The wheelchair did not get me IVIG, it was the auto-antibody test results combined with hardcore advocacy from my doctor (plus the support of my second doctor who is connected to my local infusion center). My insurance company does not give a sh*t that I use a wheelchair and did not assist me in purchasing the manual or the motorized chair. My insurance company prefers that I die which would save them money. If I save my life and get better, it is because of my own advocacy and having two doctors who believed in me.

Like I said you're on the right track it seems and you've got the right mindset. Things like reading from you "unquestionable improvements" make my eyes big.

I started at such a low baseline that although my improvements are unquestionable, they are minor compared to anything a normal person could do. I could not open my front door or patio door b/c arms not strong enough and now I can. I could not prepare my own food and now I can (while seated). I could give endless examples but they are still so minor compared to the person I was who worked an eight hour day for 16 yrs, then went to the gym for an hour, then went to dinner w/friends, etc. I'm sure you know what I mean!

We NEED to take action eventually.

I am at the point that action is the only thing I have to take. Am just at the mercy of my insurance company which sucks.

P.S.: I mean unless you've spontaneously morphed into a dog, and that avatar is actually a picture of you. In that case I'd say, well, I'm not totally sure about your case being on the right track.

Haven't yet but I suspect I might have a better QOL as a dog! My dog is so well-cared for and veterinary care is much better than human care in this country IMO.
 

Jo86

Senior Member
Messages
197
Location
France
Well in that case, bless those two doctors, not the wheelchair. And that's interesting to read, that testimony of improvement.
I know what you're saying about our past lives, but life is the greatest thing, all animals strive to keep it no matter what, some organisms have even created spontaneously by sucking on the life of others, parasites bacteria & what not. It's not that we *could* have this or that, it's what we've got today. And that's a blessing whichever way you look at it.

I'm at a point where my brainfog and general malaise are monumental, every morning a daunting, debilitating endeavor worse than the previous.. and I really can't do much, at all (!!) anymore. But I'm still here, and still got a few cards yet to play ! I'm not out yet, and I ain't come THIS FAR to quit just now ;)
Things can always get better, and things can always get worse, but not til the day that fire goes out do I call it quits. And I've time and time, and time, and time...and time again, when it seemed so long, surprised myself at just how impossibly tenacious and resourceful I really am.

Plus yeah I mean if things go reaaaaally bad you can always turn Buddhist or Hinduist and hope to reincarnate into a dog's body. Hopefully in the US, though !
 

Gingergrrl

Senior Member
Messages
16,171
Well in that case, bless those two doctors, not the wheelchair.

Yes, and it's b/c of my two doctors and not b/c of the wheelchair. I doubt my insurance even knows that I use a wheelchair. They have never met me nor seen me in person. I am no one to them.

But I'm still here, and still got a few cards yet to play ! I'm not out yet, and I ain't come THIS FAR to quit just now ;)

Agreed.

Things can always get better, and things can always get worse, but not til the day that fire goes out do I call it quits. And I've time and time, and time, and time...and time again, when it seemed so long, surprised myself at just how impossibly tenacious and resourceful I really am.

Well said and I agree with you on this, too. We are a lot alike.

Plus yeah I mean if things go reaaaaally bad you can always turn Buddhist or Hinduist and hope to reincarnate into a dog's body.

LOL. It wouldn't be such a bad life (in a dog friendly country of course)!
 

Jo86

Senior Member
Messages
197
Location
France
To get back to the PANDAS / CFS correlation, as many know those two obscure conditions are getting more and more clarity shed on them, however episodic and empirically based... one is a bunch of kids with ADHD and hyperactivity etc, the other a debilitating state of exhaustion... so no connection on the surface... but they are correlated in a few ways still:
they're unusual new (not always recognized) diseases, seem to have an autoimmune cause, and the IVIG+Rituxan treatment works (or has been known to work) with both.

I've spoken to a doctor who says lots of his patients who suffer from CFS will score positive on both the Celltrend (adrenergic,muscarinic antibodies blablah) panel, and this Cunningham (PANDAS-testing) panel. So again, it's far apart at the surface, the pieces of the puzzle not at all put together, but the evidence is there. There's some form of connection.
 

Gingergrrl

Senior Member
Messages
16,171
Thanks @Jo86 and I know there is definitely a connection w/a lot of Autism and PANDAS treatment and that IVIG & Rituximab (RTX) can be helpful in those cases. I don't know enough about the science to know why.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
Please can someone confirm the blood test collection protocol at CellTrend for the POTS Autoantibody tests?

I've done this test before, with a positive result, but it was in Hospital and this time I have to arrange everything myself so I need to get this correct.

1.Phlebotomist draws blood from your arm into self sourced 5ml SST Gold Top collection tube.
2.Let blood stand vertically for 30 min in your home/blood collection centre.
3.Within next 30 mins time limit (max), spin blood tube in centrifuge at 1300-2000g for 10 mins at 25c room temp.
4.Extract serum from tube that came out your arm, place serum into NEW SST tube? Or after 'spinning' keep blood in the same SST tube and post to CellTrend and they take the serum out?

Point 4 is confusing me, as last time I did it, I thought they only used 1 tube in the entire process (I didn't see it as I'm housebound). Yet, the Celltrend documentation states you have to put the serum into another (2nd) tube in addition to the one you used to take it out of your arm.

Here's their instructions:

''Win serum with conventional serum tubes. Centrifuge after clotting and about 1 ml of serum has to be transferred into a new tube (do not send whole blood or plasma tubes)''

Source: http://www.celltrend.de/cfs-diagnostics.html, LabService. (2nd link down, not first).

So the instructions above are indeed correct and you DO need 2 tubes after all? Because they told me you only need 1 tube - not what their online instruction says - hence i'm confused.

Many thanks for any advice.
 

halcyon

Senior Member
Messages
2,482
I'm reasonably certain that it only should require one tube as long as it's a serum separator tube and is processed as they describe otherwise. I brought in a single tiger top SST for the blood draw and I'm almost positive that is what was shipped out after being clotted and spun down (I didn't handle the shipping part so not 100% sure.)
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I'm reasonably certain that it only should require one tube as long as it's a serum separator tube and is processed as they describe otherwise. I brought in a single tiger top SST for the blood draw and I'm almost positive that is what was shipped out after being clotted and spun down (I didn't handle the shipping part so not 100% sure.)

Thank you for your reply.

I've got a 5ml SST laying around in the kitchen somewhere, I think 5ml tube is big enough as they only need 2ml of serum from memory.

I'll take the route you did, which I think is correct and the German translation is badly worded in their info. So one tube it is. I'm also going to risk it and not send it in ice, as I read sometimes this can adversely affect the cells if they are cooled.

If the results are better than last time I'll share them here. I would imagine for an optimal test result we should really have the sample analyzed straight away and not be putting in the post where it will degrade rather than be an optimal sample.
 

Jo86

Senior Member
Messages
197
Location
France
I've got a quick question. I went through most of the lab results posted on here and, well like I said I've only got out of the 9:
2 positive, and two (at risk).

Does anybody know if the results of the 130 some patients tried out at the original Norwegian experiment (who had a 66% success rate with the IVIG+Rituxan treatment) needed a particular number of those 9 Tests to come out positive ? Like, for those tested did they all have like 4 or 5 or 6 or more ? Do you know (from any source) that just 2 positives and 2 "at risk" are enough for me to qualify, and therefor attempt the IVIG RTX treatment ??
 

Gingergrrl

Senior Member
Messages
16,171
@Jo86 I do not know the answer but looked at the study from Fluge & Mella et al (which includes Dr. Scheibenbogen and Dr. Heidecke of Cell Trend Lab) and the abstract says that:

"Patients had elevated antibodies against one of more M acetylcholine and B adrenergic receptors which are potential biomarkers for response to B-cell depleting therapy".

So it doesn't seem to specific which one or how many, only "one or more" (which is why my doctor thinks I'm a potential responder w/seven positives)! The study also said that patients who were responders had a positive ANA titer and anti-thyroid antibodies (both of which I have). But am not really sure what it all means!