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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Got treatment in the EU and doing well starting remission

Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
sorin said:
Can you give the list of tests you have done and that served as a basis for your doctor to put you the diagnostic of "Systemic immune dysfunction with NMDA autoimmunity." ? And since you have a new diagnostic that means you do not have any more the CFS (which is an exclusion diagnosis). You have an auto-immune disease, but not CFS.
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Its so hard to say IMO since we don't know if some cases of ME/CFS are due to autoantibodies or if this makes it a different diagnosis? I wonder this in my own case too (but different autoantibodies).
 
Cohen2

Cohen2

Senior Member
Messages
119
Location
New Zealand
@Shawn I'm glad to hear you have found somewhere you can get treatment and that it's helping so much.

I'm thinking of trying to get tested for anti ndma etc. What is the general name for those auto abs? I've seen you say anti neuronal antibodies, is there a more common name than that? I've also seen @Gingergrrl say channelopathies. Is that the same thing?
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Cohen2 said:
I've also seen @Gingergrrl say channelopathies. Is that the same thing?
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Sorry for my delayed reply. In my case I have an autoantibody that attacks the calcium channel and I have learned that another way to refer to it is a "calcium channelopathy". I believe that any attack on an ion channel is a channelopathy. In Shawn's case with anti NMDA autoantibodies, I do not believe that this would be a channelopathy. But I am the least sciency person on the board so someone else will hopefully explain it better than me. Both auto-abs can correlate to cancers and paraneoplastic syndromes (but the cancer most commonly correlated with the NMDA vs. anti calcium auto-abs are different cancers). And often no cancer is ever found (which is so far the case for me).
 
H

HowToEscape?

Senior Member
Messages
626
sorin said:
First cases of CFS are reported in the beginning of 1980's (as a coincidence, in the same period with HIV apparition)
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With the muddling of definitions and the word games it's not so clear. Ramsey's disease from 1956 is rolled up in the vague CFS undefinition. Earlier descriptions of what appeared to be the same disease exist.
 
K

Kenny Banya

Senior Member
Messages
356
Location
Australia
Gingergrrl said:
Kenny, have you been tested for auto-antibodies or would you do the treatments regardless without knowing?
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According to a lab I contacted, there is no one in Australia that does the auto antibody tests for the ones listed as being associated with the Rituximab response, published by Fluge/Mella
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Kenny Banya said:
According to a lab I contacted, there is no one in Australia that does the auto antibody tests for the ones listed as being associated with the Rituximab response, published by Fluge/Mella
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Can you send the blood to Cell Trend in Germany from Australia for testing (only if you wanted to of course!) or would this be impossible?
 
veganmua

veganmua

Senior Member
Messages
145
Location
London, UK
Kenny Banya said:
According to a lab I contacted, there is no one in Australia that does the auto antibody tests for the ones listed as being associated with the Rituximab response, published by Fluge/Mella
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Which autoantibodies were associated with Rituximab response? I'm thinking of getting autoantibody tests, and I'd like to know where to start!
 
K

Kenny Banya

Senior Member
Messages
356
Location
Australia
veganmua said:
Which autoantibodies were associated with Rituximab response? I'm thinking of getting autoantibody tests, and I'd like to know where to start!
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Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/26399744

Antibodies against β2, M3 and M4 receptors were significantly elevated in CFS patients compared to controls

So these are the antibodies to test for
 
justy

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Gingergrrl said:
Can you send the blood to Cell Trend in Germany from Australia for testing (only if you wanted to of course!) or would this be impossible?
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Do you know how to go about sending the blood there do you have a link to the page, my googling has not thrown up the answers I need. do you need a DR to sign something for it?
 
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
justy said:
Do you know how to go about sending the blood there do you have a link to the page, my googling has not thrown up the answers I need. do you need a DR to sign something for it?
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There is a thread on PR if you do a Google site search that explains the entire protocol for how to send blood to Cell Trend in Germany (and it is actually easier and faster to send from Europe than the US). In the US, you are required that a doctor write a note for the blood draw since a patient cannot request a blood draw on their own (but am not sure how this part works in Europe). My main doc wrote a very simple note authorizing the blood draw which I brought to the specialty lab along with the instructions for Cell Trend and how to ship with Fedex International. I will try to find the thread and post the link here.

Edit: I found some of the threads and they are very long so am posting the direct website link for Cell Trend instead and hoping it has the info that you are looking for:

http://www.celltrend.de/
 
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K

knackers323

Senior Member
Messages
1,625
Kenny Banya said:
Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/26399744

Antibodies against β2, M3 and M4 receptors were significantly elevated in CFS patients compared to controls

So these are the antibodies to test for
Click to expand...

so according to this study, only 30% of people with cfs had these high antibodies?

makes me wonder if the test is really worth doing. seems to only apply to a subset or is a consequence rather than root cause.

or have i misread it?
 
K

Kenny Banya

Senior Member
Messages
356
Location
Australia
knackers323 said:
so according to this study, only 30% of people with cfs had these high antibodies?

makes me wonder if the test is really worth doing. seems to only apply to a subset or is a consequence rather than root cause.

or have i misread it?
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You're possibly right. That's the thing with a 'syndrome' its a spectrum & by narrowing the causes, possibly the 30% is an indication that they have a specific disease (it might get called Fluge Mella Disease) & the other 70% require further research so they have specific diseases discovered. That other 70% might be comprised of, say, 4 distinct diseases.
 
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