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Further research into adrenergic autoantibodies

Kenny Banya

Senior Member
Messages
356
Location
Australia
...A couple of recent findings suggest that autoantibodies may also have a role in ME/CFS, at least in some patients.

Firstly, autoantibodies against adrenergic receptors (which are involved in the sympathetic nervous system) have been found in people with postural orthostatic tachycardia syndrome or orthostatic hypotension, disorders also seen in ME/CFS patients.

And secondly, two clinical trials of the antibody rituximab (which attacks B cells and is often used to treat autoimmune conditions) in ME/CFS patients reported significant benefits to around 60% of participants. Their responses were delayed by five months, suggesting that the clinical effects of rituximab only occurred when the autoantibodies produced by the B cells had been washed out.

In 2016, Dr Madlen Löbel and Prof. Carmen Scheibenbogen at the Institute of Medical Immunology in Berlin found that nearly a third of ME/CFS patients they studied had increased levels of autoantibodies against adrenergic receptors. Furthermore, these levels decreased in individuals who responded to treatment with rituximab.

This unexpected finding suggests that, in a subgroup of patients, some of the symptoms of ME/CFS may be caused by these autoantibodies, although their exact role in the illness is not yet clear.

ME Research UK has therefore awarded funding to Dr Löbel and Prof. Scheibenbogen to continue their investigations by looking at the function of β2 adrenergic receptor autoantibodies in ME/CFS.
http://www.meresearch.org.uk/our-research/ongoing-studies/role-of-autoantibodies/
 

JollyRoger

Senior Member
Messages
138
I read that beta 2 adrenergenic antibodies are often found in persons with an allergy, asthma or even in an pre-allergy state.

22% of the population for example have allergic rhinitis.
And an allergic respond is often caused by a th1-> th2 shift like in cfs.

Here are some studies:

Receptor-specific functional properties of beta 2-adrenergic receptor autoantibodies in asthma.

Autoantibodies to beta 2-adrenergic receptors: a possible cause of adrenergic hyporesponsiveness in allergic rhinitis and asthma

Autonomic Nervous System Abnormalities and Allergy

However, subjects with allergic rhinitis and preallergic subjects (those with positive allergen skin tests without any disease manifestation) had equivalent beta-adrenergic and cholinergic abnormalities.


40% of atopic patients have this antibodies.
Has anyone an allergy, asthma or hay fever
?
I think that's the reason for the 33% of Scheibenbogen. Maybe because 33% of the population have an allergy or asthma.

Ps: Rituximab makes a th2->th1 shift

I think that it is not an autoimmune disease. it has some attributes of it like in an allergy though.

We feel sick all the time.... the same thing happens in allergies like hay fever - runny nose, tired etc.

And vaccination causes allergies: just like cfs

https://therefusers.com/vaccines-cause-allergies-dr-dave-mihalovic/
 
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Gingergrrl

Senior Member
Messages
16,171
@JollyRoger Maybe this is why such an incredibly high number of mast cell patients also have POTS (like me). I test positive for the various beta adrenergic autoantibodies from Cell Trend (like the article) plus other auto-Abs and am so hoping this places me in the responder group for Ritux!

I will be having first infusion in 10 days and will document it all on PR. My doc is in touch w/Cell Trend re: my case and am hoping my results will be useful and benefit others. I have now completed one full year of IVIG which should make the Ritux results faster (if I am a responder which I may not be). I will be following this thread, too.
 
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JollyRoger

Senior Member
Messages
138
I think that at the moment IVIG is the best treatment for us because it treats both autoimmunity and infection...it rebalances the system. If you don't know the cause for your problem than this treatment do no harm.
The problem are the costs...i can't find someone who would prescribe it for me.
I also have this autoantibodies but got an allergy with the beginning of cfs.

I also read from a doctor who had a high success rate because he treats allergies, intolerances against some foods (leaky gut?), mold issues etc. and a positive side effect was the disappearance of cfs
 

JollyRoger

Senior Member
Messages
138
I found an interesting article that the very same autoantibodies appear in crps - an intense pain after a trauma.

Complex Regional Pain Syndrome and Dysautonomia in
a 14-Year-Old Girl Responsive to Therapeutic Plasma
Exchange

In addition to her right leg pain, she began to experi-
ence worsening dysautonomic symptoms 1 to 2 months after her injury, including gastroparesis, constipation, tachycardia, and orthostatic hypotension. She also developed significant fatigue and dizziness, persistent discoloration of her leg during flares, and lack of hair and toe nail growth in the affected limb

Sounds familiar???:whistle:

And interestingly, there's also a th1->th2 shift...
I read of patients who developed allergies after crps.
 
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JollyRoger

Senior Member
Messages
138
I also found this:
In the first few months of abnormal sympathetic function (acute RSD/CRPS during the first 6 months) the sympathetic and parasympathetic systems show a significant plasticity and can adjust their activities to preserve the immune system. However, after two to three years, (chronic RSD/CRPS) this power of plasticity and ability to fluctuate the balance of the immune system disappears. As a result, the immune function is thrown off balance with resultant development of frequent infections, and in the long run, development of a tendency for cancer. Certain treatments influence the plasticity and balance of the two systems positively or negatively.

We also have this 3 years mark in cfs where the immune system changes.

More similarities:

MYTH - Reflex Sympathetic Dystrophy Syndrome (RSD/CRPS) is rare.
FACT — It is not a rare disorder and may affect millions of people in this country. This syndrome occurs after 1 to 2 % of various fractures, after 2 to 5% of peripheral nerve injuries, and 7 to 35% of prospective studies of Colles fracture. The diagnosis is often not made early and some of the very mild cases may resolve with no treatment and others may progress through the stages and become chronic, and often debilitating.

MYTH - RSD/CRPS will burn itself out in 6 months.
FACT — Many patients who are not treated early will experience spread of RSD and this may become a lifelong problem. Even with early treatment this may become a chronic condition.

MYTH - Children do not get RSD/CRPS — limb pain in children is psychological.

FACT — RSD/CRPS can start as young as 3 years of age. This is not a psychological condition. Children may develop psychological problems when physicians, parents, teachers, and other children do not believe their complaints of pain.

MYTH - Patients continue to complain because of secondary gains. They are looking for sympathy and are gaining satisfaction from this experience.
FACT— As with any group of individuals there is a small percentage of RSD/CRPS patients who get satisfaction from a chronic illness. The vast majority of RSD/CRPS patients were active, productive individuals prior to this disease and do not enjoy the pain, the loss of independence, the loss of
job or inability to attend school and the loss of income.

The most devastating aspect of the illness is that physicians, other health care professionals, employers and especially friends and family members do not understand how much the patient is suffering. They are not looking for sympathy, only understanding.

MYTH - Once RSD/CRPS is in remission, it does not come back.
FACT — It may subside for years and then recur with a new injury. The reoccurrence should be treated immediately.

MYTH - There are no symptoms except pain, swelling, heat or coldness, and color change.
FACT — There are many other symptoms including movement disorders (difficulty starting movement, increased tone, increased reflexes, tremor, muscle spasms), weakness, fatigue, skin rashes, frequent infections, migraine
headaches, and others may be found as more data is accumulated.

MYTH - Family and friends find this condition easy to understand.
FACT — RSD/CRPS is difficult for many physicians to understand. It is not surprising that family and friends do not understand the patient’s pain and disability.

MYTH - RSD/CRPS occurs in psychologically unbalanced people.
FACT — Persons who get RSD/CRPS are not any different than the rest of the population psychologically. Once they get RSD/CRPS and they are in constant pain they may be depressed and suffer other psychological changes. When RSD/CRPS symptoms are relieved these changes disappear.

MYTH - Every patient has the same results from a medication or treatment.
FACT —There are many forms of treatment and combinations of treatment and medication. What is highly effective for one, may not work in another. Medication dosages may need to be adjusted to get the best results.
 
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Gingergrrl

Senior Member
Messages
16,171
I think that at the moment IVIG is the best treatment for us because it treats both autoimmunity and infection...it rebalances the system.

It's interesting to hear you say that b/c it is my feeling as well. I know that cost makes it impossible (in the U.S.) if you cannot get insurance approval like I finally did. But if you can get approval, I agree that clinically, it is a great intervention and treatment for both immune deficiency and autoimmunity (in different doses of course).

The problem are the costs...i can't find someone who would prescribe it for me.

Can you remind me, are you in the U.S. or another country? I think you are in Germany but now am not sure?
 

JollyRoger

Senior Member
Messages
138
Yep I'm from Germany; and the prices here are horrendous.
IVIG are only paid for certain indications like low immunglobuline level.
 

Gingergrrl

Senior Member
Messages
16,171
Yep I'm from Germany; and the prices here are horrendous.
IVIG are only paid for certain indications like low immunglobuline level.

Is IVIG ever prescribed for autoimmunity in Germany? It's so ironic if it is not since Cell Trend labs is in Germany and this was (part) of the testing that helped me to get approval. It would not have been enough by itself but combined with other testing that I had done, it helped prove autoimmunity to my insurance.
 

JollyRoger

Senior Member
Messages
138
IVIG are often used for autoimmunity; guillain barre syndrome for example.
But only in special cases and as last resort.
The number one treatment for autoimmunity is prednisolon.
For a pseudo disease like cfs you will never get a prescription for such a treatment.

We only have the charite in Berlin which treats cfs patients but they have a freeze of admissions because there are so many patients.

And there are hundreds of alternative medicines who treat you with " natural" stuff.
But you never find an officially approved medicine who prescribed drugs for cfs paid by the health insurance.
Cfs is an expensive disease.