Which autoantibodies would you test for?

Hi there,

short explanation of my symptoms.
I am not the typical "got ME after virus" patient, it came on more gradually.

I am now suffering from adrenal dysfunction, mast cell activation disorder not officially diagnosed, but must be sth like that with feelings of much histamine, insomnia, feeling like poisoned/inflammed all over, flu like limb pain, cortisone and ibuprofen help with inflammation, but thats nothing for every day use (described inflammation symptoms triggered from excertion, so every step I do triggers a reaction, but this doesnt feel like typical PEM), never got sick since it all started, gastroparesis and neuropathy in legs (both started the same day!), heat intolerance, mostly housebound, most of the time in bed. Extreme muscle weakness in thighs, constant cramping/fasciluations. Started same day as gastroparesis and neuropathy.

My familiy doctor is nice but does not support any testing, tells me just to deal with it.

Rheumi not helpful either as he ruled out classical diseases 2 years ago. I have elevated ANA 1:160, he considers everyting below 360 as harmless.

I have the strong impression there is autoimmunity involved that attacks my nervs and the mastcells.

I cannot tolerate mcas medications as these all come along with some anticholinergic side effect and this aggravates my gastroparesis (which lead me to the conclusion that acetylcholine must be involved in that).

Where to start?

I will probably retest my ANA titers.

I will test the ganglionic acetylcholine-antibodies

Probably anti phospholipid antibodies

anti calcium antibodes

Any suggestions?

I have to pay all tests on my own.

Thank you!

 

Generally speaking there is no point in testing for autoantibodies unless it is reasonably clear what sort of tissue malfunction they might explain. So the physician has to go from symptoms to working out what is wrong with a particular organ system before there being any point in testing for antibodies.

For instance, if there is a suspicion of inflammation the first thing to do is establish where it is or at least to get a measure of it with something like a CRP test. If there is a suspicion of neuropathy then that has to be confirmed by physical exam findings or electrical tests.

 

@Gingergrrl might have some very useful insights

Edited: to add a warm welcome to @Josie , just noticed this was your first post

 

@Josie, I got your PM and had two appts today but will hopefully be able to reply this evening. And welcome to this new board and look forward to chatting further.

 

Hi there and thanks for your replies!
I dont have any doctor supporting me at this point with testing (family doctor is a lovely person, but thinks testing is to no avail, I should just accept the condition and ignore it as good as possible). Functional doctor does not want to test either, neurologist told me to take magnesium. GRRRRR.
It takes me a lot of energy to see new doctors as I am house/bed bound.
So I decided to do the tests in my own, I dont want to beg for it anymore. I cannot go on holidays, so I take the money for the tests. With positive test results of course I will go to a doctor and hopefully they come up with sth helpful then.
The inflammation I have feels pretty systemic, cortisone and ibuprofen help, but of course without testing I cannot be sure about it.

I have a pretty overreactive immune system but I dont think I fit into a classig disease like lupus. I suspect I might have some antibodies which trigger (partly) autonomic/nerve dysfunction.

 

I think your family doctor may be right, Josie. I interact regularly with ME/CFS researchers from a dozen different countries. I think they would all agree that testing is a waste of time unless you have something specific clinically to link it with. In general in ME/CFS we don't. There are no autoantibodies associated specifically with ME that would explain its symptoms as far as we know.

 

this is really disturbing. a significant percentage of pwme have autoimmune suspicion or several autoimmune diseases. many of those have no doctor [because bedridden or housebound] or doctors who don't know enough about autoimmunity. almost everybody does not have a doctor who knows about m.e.

and a significant percentage have too many symptoms to even LIST for the doctor. LISTING them is an act of foolhardiness or courage. doctors are trained to look upon people suspiciously who have so many symptoms.

we frequently don't know what tissue malfunctions might underlie our symptoms. and just exactly what degree of research has been done on what proportion of our symptoms? is knowledge even known?

i do very much appreciate your expert opinion, je. but i want immunology to up its game if possible, quite independently of m.e. ology upping its game [or, basically, beginning its game in earnest for the first time ever].

 

I am not sure in what sense you think things are disturbing. I agree that it is a major problem that we are not further ahead with understanding ME/CFS.

We may suspect autoimmunity in ME/CFS but so far there is no clear evidence for it being relevant. It may well not be. We cannot criticise immunologists for not finding something that is not there!

The length of list of symptoms is not a problem. I am used to people having lots of symptoms. But to have evidence of autoimmunity one needs to pinpoint symptoms that can reasonably be attributed to tissue or system problems that might be caused by autoantibodies found. Orthostatic intolerance might relate to antibodies to neurotransmitters for instance but so far no clear link has been found.

Over the years people with ME/CFS have had all sorts of tests to try to explain symptoms but by and large they have all shown nothing. So doctors have been trying but the techniques we have so far do not seem to be much help.

It is always good for immunology to up its game. That is what I spent my time trying to do and we made a lot of progress between 1970 and 2010. But it may be that there is no immune problem in ME/CFS and so we cannot blame immunologists for not finding anything.

What I think probably needs much more attention is basic physiological documentation of symptoms. We do not really know what causes orthostatic intolerance in ME/CFS. We do not know what causes exhaustion - it may have nothing to do with lack of energy availability. Only if we know that sort of thing can we expect immunologists to know what to look for in terms of autoantibodies that might cause the physiological change. Several immunologists are trying to do their best but it would help to have a clear idea what to look for.

 

For you. A long list of symptoms is not a problem for you, but trust me, as a patient, it's a huge problem.
We all learned early on to cull/tailor our list for each specific specialist at this point, bc otherwise there is the rolling of the eyes,
the pigeonholing, the suspicion, the condescension. Not to mention the simple lack of time per visit.

If more people had your attitude of openness and curiosity, we might have more accurate tests, more things found for having looked in the right places, and more willingness to look at a long symptom list as a medical detective, not as someone stuck in an outdated educational rut inside a profit-driven health care system.

But until that happens, patients are left having to be very selective in what they communicate to so-called medical professionals.
It is a very different thing being a patient living with this disease to being someone on the outside looking in.

 

Many doctors respond to a minimally understood story by ordering a bunch of expensive tests. My experience is that these are almost all useless because as Dr. Edwards says, they don’t know what they are looking for. Then when the results come back negative, the conclusion is often jumped to, erroneously, that there is nothing wrong. Some doctors are paid by how many tests they order and how expensive they are. In the U.S., doctors get the money for the hospital system by ordering tests and expensive procedures. I would much rather have a doctor who listens carefully, maybe has me monitor symptoms and collect data to answer hypotheses he may be pursuing, and not order (blinking) tests until he has got a clear focus and target. Otherwise, inappropriate tests are not only an expensive waste, their results can have a misleading effect.

 

For me, OI started after taking immune modulators and re-activating HHV6 and EBV (possible IRIS reaction). I relapsed terribly when I had been feeling 80% for years. I was never the same after that.

 

That was not really what I was meaning. What we need to know is the immediate physiological cause of OI. Is it low blood perfusion of the brain, as in a faint, or is it signalling from a baroreceptor that is firing in error? Or has it nothing directly to do with the autonomic nervous system? We simply do not know that. Medical textbooks are often very bad at assuming explanations that do not actually work.

 

My OI started after hip replacement surgery. I’d had mecfs for many years before that, with low normal blood pressures, but whatever happened in this major surgery resulted in a disabling problem with hypotension. I imagine it was the anaesthesia’s effect on the nervous system, which I have heard can result in some permanent damage.

 

In my experience, testing antibodies is always not favoured by the medical establishment in general.

They see no point, even in my case of Hashimoto's they are not interested to test antibodies after the diagnosis. There is tissue malfunction in thyroid gland and now I have to supplement with thyroid hormone which causes many side effects.

But the doctors now say -well, this happens in Hashimoto's you just need to supplement because your thyroid gland is caput! That's all we can do, no point measuring now, you are diagnosed now. Go and take your medication-.

They never explained whether there's a relation with the antibody count and the on going illness. They just wouldn't go there. I don't know why, I'm assuming there isn't, wright? No relevance? For example after going gluten free, antibodies reduced to the half, they were 1600 times over the normal, reduced to 700 after second measuring. But they are now not measuring, I'm still gluten free and now dairy free too. And I'd like to know. But when I mention those to the doctors, they started to yawn...

And yes, they keep measuring the CRP, keeps coming normal. Lucky me! Though I'm still very sick. My ankles are swollen, legs are very heavy and sore and numb...etc, long list.

If you are not sure about autoimmunity in ME/CFS (as you say you may suspect) how can you talk about not finding something that is not there? Unless you are sure that it's not there. Are you sure that there is absolutely no autoimmunity in ME/CFS? This is not yet proven.

 

Absolutely right. Antibody titres bear no relation to how well the thyroid is doing. The ones we measure are probably not even the ones involved in damaging the thyroid. They are just a useful indicator that the damage is autoimmune. It's a bit like weighing your shopping bag to see if you remembered to buy doughnuts as well as vegetables. It won't tell you the answer.

As I have said before, lots of the symptoms of autoimmune thyroid disease are neither due to inflammation nor low thyroid hormones. I very much agree that physicians do not seem to get this. But the processes that cause the symptoms are not testable for as of now.

There is no need to be sure something is not there to say that we should not blame immunologists for not finding something that might not be there. We cannot even blame them for not looking unless there is some good reason for them to do so. In fact they have looked about as hard as one could ask for and found nothing. Almost all autoantibodies have been found by luck. There is no very obvious way to go out and find an antibody. So it is a bit hard on immunologists to blame them for not going out and finding them. The real problem we have with ME research is lots of researchers claiming to have found special antibodies that turn out to be useless.

 

To start with I am not blaming anyone, not interested in blaming, I did not mention blaming immunologists or anyone. My post does not contain blaming. I was very curious about whether there is a relation between autoimmunity and ME/CFS. I am interested in this part of the conversation. So, I had a feeling that there isn't any relation after reading your answer somehow. I was trying to be sure of this.

Back to the subject, sorry about taking your time but first time a medical profession has explained the thyroid antibody titres to me in detail, thank you for this.

I'm not able to find and understand medical papers. There are also vast amount of information, at times very confusing and misleading is found here and there on the internet that I found them impossible to comprehend.

It is interesting that antibody titres bear no relation to how well the thyroid is doing but they are useful indicators that the damage is autoimmune. So, probably cutting gluten has bear no relation to the drop on the antibodies. So much is not known. It is terribly frustrating.

 

i couldn't fail not to disagree with you less! :]

seriously, nobody in this thread is blaming immunologists
for not finding something that might not be there.

we're saying some stuff that is both nuanced and not in the
literature, however, and so might be of interest.

your experience is valuable, so i hope the misunderstanding
clears.

 

So I was talking with my infectologist and I mentioned auto immunity and she said " You don´t have na auto immune disease"
OK, It´s not been proved that ME is auto imune but at the same time some patients do have high auto antibody titers .
Probably they are not responsible for the symptoms but the fact that they are there is not an indication that something at least strange is going on with the imune system?
What do you think , @Jonathan Edwards ?

 

No, it does not in itself indicate anything strange because a similar proportion of normal people also have autoantibodies. Autoantibodies are not necessarily a sign of anything wrong.

 

When would you say autoantibodies are a problem?

What confuses me a bit: I got the impression here that lab results aren't "central" in the sense that one cannot tell there's a problem by lab results. (Normally people with symptoms test their blood..)

How can you diagnose an autoimmune problem if you cannot rely on lab results or if lab results "don't tell it"?

This can be extended to any illness where laboratory work is used. Or research. What DOES it tell then? If blood tests or other tests of body tissues aren't reliably helpful, what can you do?

I fear I wasn't able to communicate what I mean...