Emerging autoantibody lab tests
The chart below shows the testing available from 5 different labs. So for example, if you have small fiber neuropathy (or symptoms highly suggestive of it), you would consider testing from either of the 2 labs that offers testing for auto-antibodies associated with SFN.
If you are curious about all of the conditions on the chart above, here are explanations of each one:
- ME/CFS refers to chronic fatigue syndrome. Some ME/CFS patients have fatigue so severe that they are bedbound.
- POTS refers to Postural Orthostatic Tachycardia Syndrome. Patients experience a rapid increase in heartrate when going from lying down to standing. A 'poor man's tilt table test' can be performed at home.
- Small fiber neuropathy affects small nerves in the skin. Symptoms include: tingling sensations or burning pain in the feet, reduced sensitivity to heat and certain types of pain.
- Hypertension = high blood pressure. Many pharmacies will test your blood pressure for free.
- Myocarditis refers to heart inflammation.
- Dysautonomia refers to a group of problem caused by your body's autonomic nervous system. The ANS controls "automatic" functions of your body that you don't have to consciously think about such as heart rate, blood pressure, digestion, dilation and constriction of the pupils in your eye, kidney function, and temperature control.
- Movement disorders include things such as balance, uncoordinated movements, etc.
- Neuropathy refers to problems with your nerves.
- Motor refers to nerves that control your muscles.
- Sensory refers to sensory nerves which provide feelings of hot/cold, numbness, tingling, pain, etc.
- Peripheral neuropathy refers to nerves outside of the brain and spinal cord. There are three types of nerves: motor, sensory, and autonomic. The autonomic nerves control functions such as digestion, urination, and blood circulation. Peripheral neuropathy would be suspected if all three types of nerves are not functioning properly.
- Sensory neuronpathy (with an extra N in neuroNpathy) - Neuronpathy refers to a specific type of neuropathy where the nerve degeneration doesn't follow a length-dependent pattern and there is destruction of DRG (dorsal root ganglia). While the nerve damage is different, neuroNpathy can be difficult to distinguish from neuropathy.
- Demyelinating neuropathy involves damage to the myelin sheath of the nerves rather than the nerve axon.
- Acute neuropathy refers to neuropathy that appears suddenly.
- Myopathy refers to diseases that affect the muscles that control voluntary movement in the body.
- Paraneoplastic refers to a group of rare disorders that are triggered by the immune system attacking a cancerous tumor (neoplasm). However, immune cells will engage in 'friendly fire' and mistakenly attack normal cells.
How testing may be useful
The chart below lists specific auto-antibody tests and the conditions that they are associated with. If you have the symptoms of a particular syndrome or condition (e.g. SFN), then a positive auto-antibody test would suggest that you have the syndrome/condition and that auto-immunity may be the cause. These tests may be useful because they can provide evidence that you have an autoimmune condition that may respond to existing treatments (and experimental treatments) for autoimmunity. A longer explanation of SFN testing can be found here: https://neuropathycommons.org/neuropathy/causes-neuropathy/autoantibodies-and-small-fiber-neuropathy
Evidence of specific health conditions might be useful for vaccine injury compensation; however, you should seek out legal information that is relevant to your country. See the newly injured guide for some basic information on injury compensation.
Not all patients with a particular syndrome will have (measurable) autoantibodies associated with that syndrome.
The columns on the right show which labs offer which specific tests.
For scientific papers regarding the association between auto-antibodies and particular conditions/syndromes, refer to the laboratories' websites for links to scientific papers.
- For information on the (possible) association between ACE2 auto-antibodies and long COVID/PASC, see Development of ACE2 autoantibodies after SARS-CoV-2 infection https://doi.org/10.1371/journal.pone.0257016
- For information on auto-antibodies in those injured by HPV vaccines, see http://www.remedypublications.com/open-access/autoantibodies-against-autonomic-nerve-receptors-in-adolescent-japanese-girls-after-5147.pdf
For all of the labs below, the blood must be drawn and centrifuged. Then it should be cold packaged and couriered to the lab (in Germany) within a certain timeframe. Patients generally must make these arrangements themselves.
Patients can hire a phlebotomist or other medical professional to draw their blood.
Patient support groups may be able to help you through this process.
This German lab offers tests for auto-antibodies associated with POTS, long COVID, CFS (chronic fatigue syndrome), and SFN (small fiber neuropathy).
Cost: Roughly €915 for all tests. Cost is lower if fewer tests are purchased.
How to order: React19 has a guide on ordering this test.
Cost: Around €240.
Information on their auto-antibody testing can be found in their English/German information form: https://berlincures.de/wp-content/uploads/2021/11/Berlin-Cures-Consent-Form-LongCovid-EN-20211118.pdf That form seems to be no longer available but is archived here.
Please contact them or check their Twitter @BerlinCures to see if they are currently accepting specimens.
Cost: Around €283.50 including VAT (19%)
WUSTL - Washington University in St. Louis
WUSTL offers a wide range of autoantibody and biopsy tests. The requisition form (https://neuromuscular.wustl.edu/lab/reqs/SerumRequisition.pdf) lists autoantibody test panels for the following syndromes:
- Motor neuropathy
- Sensory (±motor) neuropathy
- Peripheral neuropathy
- Sensory neuropathy/neuronopathy
- Demyelinating neuropathy
- Acute neuropathy
- Myopathy (2 different panels)
Mayo Clinic laboratories offers testing for:
- Autoimmune movement disorders: https://www.mayocliniclabs.com/test-catalog/Overview/92121
- Autoimmune dysautonomia (POTS is a form of dysautonomia): https://www.mayocliniclabs.com/test-catalog/Overview/606192
Conflicting evidence on Celltrend's ELISA test
A paper by Hall and colleagues found that Celltrend's ELISA test was not useful in separating POTS patients from healthy controls. https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.122.059971
A collaboration between Yale University and Mount Sinai did not find elevated auto-antibodies in Long COVID patients, contrary to the investigators' hypothesis. https://twitter.com/VirusesImmunity/status/1557394192225157122
Patient support groups
There is a patient support group for those with SFN-related autoantibodies (TS-HDS, FGFR3). https://www.facebook.com/groups/735210727192623/