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Autoantibodies and ANAs

Malea

Senior Member
Messages
260
how were you diagnosed w atlantoaxial instability and CCI?

which neck brace do you use?

For AAI I was diagnosed via a rotational CT.
For CCI. I‘m still not officially diagnosed. To this point I‘m only clinically diagnosed from symptoms and reaction to traction. I can’t do an upright mri.

I use the aspen vista and a soft collar.
 

ebethc

Senior Member
Messages
1,901
For AAI I was diagnosed via a rotational CT.
For CCI. I‘m still not officially diagnosed. To this point I‘m only clinically diagnosed from symptoms and reaction to traction. I can’t do an upright mri.

I use the aspen vista and a soft collar.

do you have EDS?
 

Gingergrrl

Senior Member
Messages
16,171
is IVIG/SCIG rx'ed if antibodies are normal BUT MCAS is indicated? do you know?

I’m not sure if I fully understand your question but will try to explain :xeyes:! I have never done SCIG but my mast cell specialist had many patients (myself included) whose MCAS went into remission from IVIG.

I don’t know of research studies on this b/c there are so few mast cell specialists (both in the US and worldwide) and IVIG is incredibly expensive. My specialist is an allergist/ immunologist and sadly is about to retire :cry:

When you said “antibodies are normal” did you mean the standard tests measured in MCAS (methyl-histamine in serum & urine, prostaglandins, tryptase, chromogranin A, etc) or did you mean viral antibodies, or did you mean autoantibodies pertaining to other autoimmune conditions?
 

ebethc

Senior Member
Messages
1,901
did you mean autoantibodies pertaining to other autoimmune conditions?

this.... none of the standard AI autoantibodies were positive ...

however, "standard" doesn't usually apply to CFS..e.g., I haven't been tested for beta-adrenergic and muscarinic autoantibodies (and maybe others that I should be tested for but don't know about)


I have never done SCIG but my mast cell specialist had many patients (myself included) whose MCAS went into remission from IVIG.

it's my understanding that IVIG is for AI conditions (over-active immune systems) and SCIG is for under-active immune systems...(I have super low NK cells)... still investigating, though, so I can't really say more than that at this time..

standard tests measured in MCAS (methyl-histamine in serum & urine, prostaglandins, tryptase, chromogranin A, etc)

are these tests only valuable if they're administered when you're reacting to something? ie, could you test negative at a time when there's nothing triggering MCAS, but then test positive, say, the next week, after a trigger? I believe this is true for SOME of these tests, but I don't know if it's always true for all...just curious b/c I would love to get all of them (I"ve had some of them) but I have bad insurance and have to pick my battles carefully..
 

Gingergrrl

Senior Member
Messages
16,171
this.... none of the standard AI autoantibodies were positive ...

I thought you were referring to autoantibodies but I was not certain!

however, "standard" doesn't usually apply to CFS..e.g., I haven't been tested for beta-adrenergic and muscarinic autoantibodies (and maybe others that I should be tested for but don't know about)

Do you have a positive ANA titer, Hashimoto's Disease, or other signs of autoimmunity? The only lab that I know of that tests the alpha & beta adrenergic and muscarinic/cholinergic autoantibodies is Cell Trend in Germany. The other panels that were useful in my case were some of the Mayo Panels like PAVAL and DYS1 (which I believe is now called DYS2) and some panels to rule out Myasthenia Gravis & MuSK. The Mayo Panels are what confirmed that I have the Calcium Channel/LEMS autoantibody (and also anti-GAD65).

it's my understanding that IVIG is for AI conditions (over-active immune systems) and SCIG is for under-active immune systems...(I have super low NK cells)... still investigating, though, so I can't really say more than that at this time..

It's a little more complex/nuanced than that and I hope I can explain it! IVIG can be used BOTH in immune deficiency AND in autoimmunity but the difference is the dosing. It is usually low dose for immune deficiency and high dose for autoimmunity (but it can be the identical product such as Gamunex administered via an IV as IVIG).

SCIG is administered SubQ (vs. an IV) and is usually a lower dose BUT if someone did daily (or frequent) SCIG, it is still possible to do high dose via SCIG. So it is not simply the method of administration vs. the dosing.

Like you, I had super low NK cell functioning and yet I had insane levels of autoimmunity. I was told by all of my doctors that low NK functioning is not a marker of anything specific. The mold specialist that I did a consult with in 2015 said that her patients almost always had low NK cell functioning and my MCAS specialist said the same thing re: his patients (and neither of them work with ME/CFS patients).

My main doctor (who is an ME/CFS specialist) but is now treating me for autoimmunity said that he really doesn't test for NK functioning any more b/c the number doesn't really tell him anything specific that would change the treatment plan vs. other testing. I am paraphrasing and that is NOT an exact quote!

are these tests only valuable if they're administered when you're reacting to something? ie, could you test negative at a time when there's nothing triggering MCAS, but then test positive, say, the next week, after a trigger? I believe this is true for SOME of these tests, but I don't know if it's always true for all...just curious b/c I would love to get all of them (I"ve had some of them) but I have bad insurance and have to pick my battles carefully..

You will probably get a variety of answers to this question but in my case, my (blood) histamine level was 4x normal at the end of 2014 but I had never had an allergic reaction and I thought the result must be false. A few months later I had my first episode of anaphylaxis which progressed until I was allergic to all food. I ended up in the hospital in May 2015 on IV and IM Benadryl and barely able to eat 4-5 foods.

In my case, the (histamine) test results showed up positive a few months before I had any allergic reactions but I understand from my main doctor and my MCAS specialist (who I started seeing in July 2015) that this is unusual.
 
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Belgiangirl

Senior Member
Messages
108
This screams like autoimmunity im confused why it didnt get detected. Some experience are similiar with me, also the bad doctor part.
I also got the yellow spots on white part of eye. But doctor says its nothing. Also since last year got blinking light upon waking sometimes. But doctor check and says no known cause.

I also get pain in the middle of chest when i got worse and body aches might be due to the positive autoantibody.

*editt: i just realized we recently spoke in pm. Thats why i feel something similiar. I often get confused and forgot things.:bang-head::bang-head:I feel silly.
thank you for the encouragement.

Sorry haven't been on this forum for a while due to health research / issues.

It's indeed unbelievebale. Probably everyone was so stuck in the psychiatric problems (because I had problems with uni as a consequence of an operation) / CFS reasoning on one hand and the other doctors just don't keep their records right or don't go into them at all...

Do you seriously also have this yellow spots? Unbelieveable... Will it have to do sth with endometriosis I do wonder now?
(I also didn't make the link! How are you? I hope you are fine!).
 

Belgiangirl

Senior Member
Messages
108
Update on possible lupus diagnoses as CFS/ME for 18 years so gone without treatment:

Still not symptomfree. Eyes got better tough. Taking in plaquenil not always systematically.
My health is not better, not worse (general condition), but some problems got worse esp. the lung problem and I also do experience heavily lung/diaphragm/back aches. In general still sleeping at prenoon, brainfog more or less... When I took 2 plaquenils it clearly worked better, but I felt kidney pain already so I guess this was no option long term. No I take 1, sometimes forget even this one, sometimes take 1.5 ...
After I take 1.5 I have cléarly more lung issues and asthma attacks...

Blood labs: ANA rose untiil 1:320....

Strange enough I have been much more ill in my life... Meaning probably it has been much higher in the past...
Another implication plaquenil definitely does not have the AI unter control, all other blood AI labs (ENA panel) do test negative tough.
 

Belgiangirl

Senior Member
Messages
108
@Gingergrrl wow didn't realise you have been this ill. What a way you have sough yourself up too...

In Belgium and I think other EU countries IVIG is not reïmbursed by the health care system. Maybe in very extreme cases were it is life or death that a special fund may donate some money. In other cases it is not even offered.
But I guess since it is very expensive in "normal AI or MCAS" cases it is also not being considered, but as I read it your case clearly was a life or death situation. :-S

You mention muscarinergic/cholinergic antibodies. Since I suffer from cognitive problems - probably after being prescribed to much anticholinergic - being tested by celltrend and others by mayoclinic.

- Is this evidence based?
- What are the costs?
Financially I am not priveliged...
I looket into the website because of @Aubry mentioning it before but couldn't make much sense of it?

MCAS: never been tested for it. Don't know if it is taken "serious" in our country.
When they tested my lung response to histamine tough upon the slightest dose I immediately got stomach aching and I felt it literally going trough my throat and every single cell it passed: eye irritation, vision trouble, headache, stomach and belly pain, feeling nauseas, dizzy, getting brainfogged...

Is this a normal reaction to breathing in histamin for everyone or is this an extreme respons?
 

Gingergrrl

Senior Member
Messages
16,171
In Belgium and I think other EU countries IVIG is not reïmbursed by the health care system.

There are only a few diagnoses in which Medicare will pay for IVIG (like CVID "Chronic Variable Immune Deficiency" and a few others). Versus with private insurance companies your doctor can appeal and it is possible to get it for autoimmunity and many different diagnoses.

but as I read it your case clearly was a life or death situation. :-S

I doubt my former insurance company cared about that and it was cheaper for them if I had died :xpem:

You mention muscarinergic/cholinergic antibodies. Since I suffer from cognitive problems - probably after being prescribed to much anticholinergic - being tested by celltrend and others by mayoclinic.

I'm not sure if I understand the question but are you asking if the muscarinic/cholinergic autoantibodies can cause cognitive problems or if anti-cholinergic meds can cause them (or neither)? The tests for those autoantidbodies were done by Cell Trend vs. the tests I had done by Mayo's lab were for paraneoplastic autoantibodies, autoimmune dysautonomia, myasthenia gravis, and a few other things that my doctor was looking at.

- Is this evidence based?

The tests run by Mayo's lab are 100% evidence based but the Cell Trend tests are still considered experimental by most doctors (at least in the US). I am not sure about in Germany where Cell Trend Lab is located.

- What are the costs?

My insurance paid for the Mayo tests so I don't know the cost. And Cell Trend was around $500 or $600 when you do the entire panel, have a home phlebotemist do the blood draw, and pay for Overnight International Shipping with Fedex with a clinical cold pack.

MCAS: never been tested for it. Don't know if it is taken "serious" in our country.

It's not taken seriously most places outside of the few mast cell specialists (who are usually allergists & immunologists).

When they tested my lung response to histamine tough upon the slightest dose I immediately got stomach aching and I felt it literally going trough my throat and every single cell it passed: eye irritation, vision trouble, headache, stomach and belly pain, feeling nauseas, dizzy, getting brainfogged...

Is this a normal reaction to breathing in histamin for everyone or is this an extreme respons?

My histamine reactions were to food and I'm not familiar with a test where you breathe in histamine. I would assume your reaction would be considered a normal reaction to having to breathe in histamine though!