Autoantibodies against neuronal antigens (weak positive?)

[Lisa108]

Peace, people! We can disagree without getiing angry...

I can totally understand both sides. If it were my results, and reading about this autoantibody being sometimes related to cancer, I would wonder too, if I were developing something there.
But if the results came from another lab, they would just have noted it as 'negative'.

So here is a happy little piglet wishing you a good time (day or night, depending on which side of the planet you're on)

 

[Hip]

I am not sure what's the problem here.

That seems to be the case: you do not to appear to understand what I am saying.

Are you actually suggesting something applicable to the problem, in this case, like some other posters, to repeat the test or is your advice simply forget this result and never reconsider?

Try reading my posts — that's the usual convention when you want to understand what someone else is saying.

 

[Hip]

@Aubry, just in case what I was saying earlier is not clear. let me try again: when you look at lab results, you usually rely on a doctor's interpretation, or the interpretation of some other knowledgable person.

You can sometimes find doctors or experts who will interpret lab reports differently to the standard interpretation, and then you may want to go with that different interpretation.

Here is an example: in viral testing in ME/CFS, when you look at the IgG antibody titers of a virus, chronically high IgG titers are generally ignored by the average infectious disease specialist and considered nothing important. Whereas to an ME/CFS specialist doctor, such chronic high titers suggest to them an ongoing infection in the body.

In the case of enterovirus, ME/CFS expert Dr John Chia says that titers of 1:320 or higher are indicative of a chronic active enterovirus infection in the tissues of ME/CFS patients.

Titers fall in the sequence: 1:10 ... 1:20 ... 1:40 ... 1:80 ... 1:160 ... 1:320 ... 1:640 ... 1:1280 ... 1:2560

So according to Dr Chia, active infection is when you have titers in the red range above. Dr Chia determined 1:320 was the threshold by a study and statistical analysis he performed on hundreds of patients and healthy controls.

And this is what is generally required when you set a threshold: it requires a study and a statistical analysis to determine the threshold level for a positive result. This threshold is generally not something that you can just guess yourself.

By all means if you find an knowledgable person who might interpret your results differently to the standard interpretation, then you may want to go with their opinion. But you'd need to find someone with expertise.

 

[pibee]

View attachment 29931

CUTIE

 

[Aubry]

I asked KDM explicitly via email and he replied I don't have to search for cancers (short answer of course). I will test these antibodies myself in a different lab than neuroimmune in Germany. I see they also measure it in my own country Belgium. And try to build a case with blood tests and other tests. To be sure, I will also ask for a PET scan from my lungs.
Thx all.

 

[Gingergrrl]

@Aubry I'm not sure if any of this will be helpful and if not, just disregard! I tested positive for two paraneoplastic autoantibodies from Mayo (N-type Calcium Channel autoantibody and anti GAD65). I was negative for Amphyphysin but my understanding of it is similar to @Lisa108 in that it seems to be a paraneoplastic variant of the SPS (Stiff Person Syndrome) autoantibody (and GAD65 is the more common one).

These autoantibodies can link with specific cancers or they can link with NO cancer but I understand the fear. The CA+ Channel (LEMS) autoantibody that I have can highly correlate with small cell lung cancer and I had three lung cat scans (2015, 2016 and 2017) that were all clear. My doctor and I have debated it if is worth the radiation to do another cat scan in the future and at this moment, I am not doing one (but that could change).

If you have doubts about the specific lab that ran your test, or for any other reason, I would agree with @kangaSue to run the PAVAL Panel from Mayo Clinic (assuming it is possible to do from Belgium which I am not certain).

Also, when you mentioned doing a PET scan of your lungs, I was curious if this was suggested by your doctor vs. your own idea? The reason I am asking is b/c I was told that a PET scan can only pick up on a tumor or mass that is above 8 mm (I believe that is the number but please verify). Therefore, you would usually start with a high resolution lung cat scan which can pick up smaller nodules. Please verify in case I have gotten any of that wrong!

 

[Aubry]

@Gingergrrl Yes I was intent to do a high resolution scan from lungs since small cell lung cancer is the associated cancer. What I surely will do is the same test panel I did but here in Belgium lab to see if there are differences. The PAVAL panel I don't know. I do want to search stuff for my disease but I don't really like the idea of many autoantibodies connected to cancers...

 

[Gingergrrl]

Yes I was intent to do a high resolution scan from lungs since small cell lung cancer is the associated cancer. What I surely will do is the same test panel I did but here in Belgium lab to see if there are differences.

I assume you would run the test panel in the Belgian lab first before doing the cat scan?

The PAVAL panel I don't know.

It's the paraneoplastic autoantibody panel from Mayo Clinic in the US. Mayo has a bad reputation as far as treatment of illnesses like ours but they have an excellent lab. I don't know if you can send blood there from Belgium although I would assume it is possible since I have successfully sent blood from the US to Germany for testing.

Here is the link:
https://www.mayomedicallaboratories.com/test-catalog/Overview/83380

I do want to search stuff for my disease but I don't really like the idea of many autoantibodies connected to cancers...

I agree and when I learned about the (potential) cancer connection in my case, it was very disconcerting

 

[Aubry]

@Gingergrrl Yes almost always SCLC

 

[kangaSue]

I will also ask for a PET scan from my lungs.

The antibodies are the "early warning system" of a possible pending cancer here and the lag time between them appearing and a cancer being of a detectible size can be up to 4 years so even a PET scan may not detect anything untoward. If you don't have any of the antibodies, a chest X-ray should probably be sufficient.

@Gingergrrl Yes almost always SCLC

SCLC and breast cancer are only the two most commonly occuring cancers suggested in the literature to result in a paraneoplastic syndrome but many other cancers can occur as a consequence.

 

[Aubry]

@kangaSue Yes, but the laboratory says the result for these antibodies are negative. Is it then still an early warning system? Is an RX then sufficient despite the values of the antibodies not being zero?

 

[Gingergrrl]

@kangaSue Yes, but the laboratory says the result for these antibodies are negative. Is it then still an early warning system? Is an RX then sufficient despite the values of the antibodies not being zero?

Hi Aubry, I know you were asking KangaSue but I was curious why you suspect a paraneoplastic disorder as the cause of your symptoms when the lab says the autoantibodies are negative? When I first read the thread, I thought that you were not comfortable with the validity of the original lab so you were wanting to re-do it at another lab (which I totally understand and in my case if I had my two paraneoplastic autoantibodies show as positive from Quest, I would absolutely want confirmation from Mayo) but now I think I might have misunderstood something?

In your case, I would definitely confirm the test at another lab, but until you get a positive lab result, I would not pursue a lung cat scan or pet scan (unless I am misunderstanding). Also what does "RX" mean? In the US, it refers to a prescription but I think you are referring to something else (I'm just not sure what)?!

 

[Aubry]

@Gingergrrl Because I have a smoking history of 10 years (from 20 to 30 years old). And my disease started quite suddenly and I don't recognize so much symptoms of ME (besides the chronic fatigue and PEM). After vaccinations I got very suddenly from 90% functioning to bed bound for months. It started with some sort of dizziness attack from my spine to inside my brain, then seconds later I got tinnitus then paresthesias, small fiber neuropathy, fatigue of course, vascular neuropathy probably too (my legs are burn in the morning and they the vessels are red bright)...

I was/am hoping I might suffer from some other disease such as Auto-immune Encephalitis like. Especially since the latest labs show Anti-SSA positive, ANA en ENA. But if certain auto-antibodies are 90% connected to cancer it looks much less bright regarding treatments.

More and More I think I am one of the subgroups related to unknown auto-immune dysautonomia.
Especially since the gut treatments (from KDM) brought me nowhere in being severe ill for now 5 years.

 

[pibee]

There is research where these antibody is linked only to 35% of cancers, ......so if you already have a disease that would be explained by this antibody (lets ignore that it's not even positive (?) ), by that i mean dysautonomia, why focus on cancer? So much?
It seems like your primary focus is something you dont even have or suffer from, but your primary disease that disables your functioning is not even discussed here.
Sounds hypochondric problem. You're freaking out completely.

For cases like this I understand when doctors dont believe us. I found out 1 year ago I have homozygous mutation for Lynch syndrome, which gives me extremely high risk of cancer, like 90% in youth even, of any organ , including brain.
Because I feel so severely bad in the whole year I remembered Lynch maybe 3 or 4 times, beause my primary disease is giving me so much suffering that I dont have the energy to worry about possible cancer.

 

[Lisa108]

@Aubry: All your symptoms can be found in Lupus. You've got one autoantibody that is specific for Lupus and Sjoegren's. The complement components match with that. I wouldn't be surprised if you'll get an "autoimmune disease" diagnosis.

The amphiphysin-antibody is negative. Let's discuss it again IF you are tested positive, so most likely NEVER.

(And btw: amphiphysin-antibodies ARE treatable, with IVIG, steroids, and/or Rituximab. I'll give you a link IF you can show me a positive test result, so most likely NEVER.)

When is your next appointment with your doc? Can he refer you to a specialist in autoimmunity?
Best wishes, Lisa.

 

[kangaSue]

@kangaSue Yes, but the laboratory says the result for these antibodies are negative. Is it then still an early warning system? Is an RX then sufficient despite the values of the antibodies not being zero?

Being antibody negative then means that you have the same chances of getting SCLC as any other ex-smoker. I had a similar smoking history, had quit for over 20 years, but still got lung cancer, only it was non-small cell carcinoma which anyone can get and I wasn't positive to any of these antibodies we're talking about here. Just the luck of the draw sometimes.

You can be sero-negative to ganglionic nicotonic acetylcholine receptor antibody but still have Autoimmune Autonomic Ganglionopathy and that happens in up to 50% of cases of AAG. The few people I know with AAG also have a co-morbidity of one of the autoimmune connective tissue disorders too (as well as EDS for that matter) and that is what your positive antibody findings are pointing to too, a connective tissue disorder.

Autonomic Neuropathy is very common here too, either as an autoimmune factor or idiopathic. It is often just diagnosed as Small Fiber Neuropathy if it's not fully tested for with an autonomic function test panel to see if it affects autonomic (vagus nerve) fibers (Tilt Table Test, Valsalva Maneuver and Heart Rate Variability to Deep Breathing (for cardiovagal function), a QSART sweat test at least for any abnormal sweating (sudomotor dysfunction - also very common in SFN) but helpful to include a Thermoregulatory Sweat Test (TST) too).

 

[pibee]

Autonomic Neuropathy is very common here too, either as an autoimmune factor or idiopathic. It is often just diagnosed as Small Fiber Neuropathy if it's not fully tested for with an autonomic function test panel to see if it affects autonomic (vagus nerve) fibers (Tilt Table Test, Valsalva Maneuver and Heart Rate Variability to Deep Breathing (for cardiovagal function), a QSART sweat test at least for any abnormal sweating (sudomotor dysfunction - also very common in SFN) but helpful to include a Thermoregulatory Sweat Test (TST) too).

I see you're very informed about this. Do you know if autonomic neuropathy is confirmed by tilt table test that shows POTS? I am still confused on the difference between sensory nerves (SFN) and autonomic nerves.
My Valsalva Maneuver and HRV to Deep breething was good. QST impaired, QSART not sure, don't have the results yet...
what was confusing to me that the neuro wrote 'autonomic neuropathy' diagnosis.
ps. i have Sjogrens too. and -based on tilt and HR - quite strong POTS. (with very high CellTrend abs)

 

[Gingergrrl]

But if certain auto-antibodies are 90% connected to cancer it looks much less bright regarding treatments.

I was curious where you got the statistic that certain autoantibodies are 90% connected to cancer? I have the LEMS (calcium channel autoantibody) that is connected to small cell lung cancer and I have seen all kinds of statistics out there (some very scary) but I don't think I've seen a statistic that was higher than 60%. Which autoantibody (ies) were you referring to with the 90% statistic?

More and More I think I am one of the subgroups related to unknown auto-immune dysautonomia. Especially since the gut treatments (from KDM) brought me nowhere in being severe ill for now 5 years.

It sounds like you are one of the sub-groups (or misdiagnosed groups?) like me who have autoimmune dysautonomia. But just b/c the antibiotics and gut treatments from KDM did not work for you, does not mean that you have cancer. They would not have worked for me either (had I tried ever them).

Autonomic Neuropathy is very common here too, either as an autoimmune factor or idiopathic. It is often just diagnosed as Small Fiber Neuropathy if it's not fully tested for with an autonomic function test panel to see if it affects autonomic (vagus nerve) fibers (Tilt Table Test, Valsalva Maneuver and Heart Rate Variability to Deep Breathing (for cardiovagal function), a QSART sweat test at least for any abnormal sweating (sudomotor dysfunction - also very common in SFN) but helpful to include a Thermoregulatory Sweat Test (TST) too).

This is so frustrating (NOT you KangaSue and your info is incredibly helpful) but my situation back in 2016. I had extensive autonomic testing in 2016 with everything that you mentioned except for the TST. Everything was abnormal (Tilt Table Test, valsalva & deep breathing, QSART) at that time plus they found the two autoantibodies (LEMS and GAD65) but the Neuro ended up dismissing my entire case as psychosomatic and I was unable to get copies of the autonomic testing even for my main doctor who felt the results showed horrible abnormalities.

I was able to get copies of the abnormal autoantibody tests from Mayo but not of the autonomic testing (beyond a very cursory one page summary saying the TTT showed "Significant POTS" and QSART showed "abnormal sweat response and neuropathy to the long branch nerves of the feet". It really aggravates me that Stanford refused to give me my complete records and the Neuro wrote negative things (b/c he did not believe MCAS was real and other nonsense that defied logic). So I really do not know if I had autonomic neuropathy or other issues at that time. In a way, it doesn't matter and my main doctor and MCAS doctor got me the treatments that I needed which led to this remission, but at the same time, it still makes me very angry b/c I had a right to my full test results.

 

[kangaSue]

I see you're very informed about this. Do you know if autonomic neuropathy is confirmed by tilt table test that shows POTS? I am still confused on the difference between sensory nerves (SFN) and autonomic nerves.
My Valsalva Maneuver and HRV to Deep breething was good. QST impaired, QSART not sure, don't have the results yet...
what was confusing to me that the neuro wrote 'autonomic neuropathy' diagnosis.
ps. i have Sjogrens too. and -based on tilt and HR - quite strong POTS. (with very high CellTrend abs)

It's often the case that SFN occurs with just affecting sensory fibers causing peripheral neuropathy pain and without affecting autonomic fibers so there's no other symptoms of autonomic dysfunction with it (autonomic nerve damage affects the axons in small-fiber neuropathies, common symptoms include excess or lack of sweating, heat intolerance, inability to expand and contract the small blood vessels that regulate blood pressure, and gastrointestinal symptoms).

Confusion can arise because the terms SFN or Autonomic Neuropathy are often widely used interchangeably regardless of whether or not there is this extra autonomic dysfunction too.

An abnormal Tilt Table Test result alone doesn't diagnose Autonomic Neuropathy but I think it does if QSART is abnormal too. Much of the literature suggests you need the panel of tests I mentioned above though to achieve the highest diagnostic accuracy. QST I believe is another sensory test

 

[kangaSue]

This is so frustrating (NOT you KangaSue and your info is incredibly helpful) but my situation back in 2016. I had extensive autonomic testing in 2016 with everything that you mentioned except for the TST. Everything was abnormal (Tilt Table Test, valsalva & deep breathing, QSART) at that time plus they found the two autoantibodies (LEMS and GAD65) but the Neuro ended up dismissing my entire case as psychosomatic and I was unable to get copies of the autonomic testing even for my main doctor who felt the results showed horrible abnormalities.

Where the autonomic tests are concerned, that would be diagnosed as Autonomic Neuropathy as I understand it.