Autoimmune Antibodies

[looneymom]

I found a resource that gives a good overview of old and new autoimmune antibodies. Autoimmune Encephilities is becoming a term that seems to be more accepted by the medical community. If you have had any testing for autoimmune antibodies and wondered what symptoms you would be experiencing this resource is loaded with studies and research. From my own research, I have realized that some of Tyler's autoimmune antibodies can be found in other autoimmune disorders. So this is most likely why Tyler does not fit into the PANDAS catagory. Tyler has had many different types of infections and virus that have just kept knocking his body down. The term encephalites has always bothered me because I always thought of this as something life threatening. However, if these autoimmune antibodies are not eventally taken care of, then it could become life threatening. When these autoimmune antibodies cross the brain barrier, then it causes problems in different systems of the body.

http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx

[corina]

Rachel, again, thanks so much for sharing all your articles!

[Katybug]

Rachel,

This is really good stuff! Thanks for posting.

[looneymom]

You're welcome. It's a little overwhelming seeing all of this but hopefully it will help someone. You guys have been so great to provide support. My heart goes out to all of you that are suffering and just cannot get the treatment that you need. The only advice is to go to your doctor when you are at your worst. From this mom's experience that's easier said than done. There were several appointments that Tyler begged for me to cancel because he felt so bad.

[RichGotsPots]

Looney- I don't see the autonomic connection in that article

[looneymom]

Hi Rich,

It's hard for me to explain this but I will try my best. From research I have read that antineuronal antibodies can cross the brain barrier, and they can interfer with brain signaling. If they keep progressing, they can cause encephalities and other autoimmue illnesses. In my son, recent testing was done that showed high levels of the antineuronal antibodies of Dopamine 1, dopamaine 2, Tublin, and Cam Kinese II. These antibodies have been assoiciated with Rhumatic fever, and Sydenhams and other movement disorders. These antibodies are caused by different types of viruses and bacteria. Research is suggesting these antibodies can be triggered by bacterial molecular mimicry. This supposedly occurs in Rhumatic fever. There has been quite a bit of research done on molecular mimicry but the medical community seems to have a hard time accepting situation unless they can find these antibodies through testing. However, progress is being made with all the research going on. Mayo released testing last year for the antibodies that have been found in some POTS patients. Sydenham's chorea and Antiphospholipid Syndrome, AGG, and Paroneoplastic are condtions that affect the ans. Our doctor believes this is the connection with my son's POTS condition. I came across another research article that goes a little more indepth with some other conditions that can be caused by these antineuronal antibodies. My personal opinion is that really any underlying condtion can affect the ans and needs to be cleared up if possible. Autoimmune Encephalities can cause so many problems in the body. It's kind like the chicken and egg theory. You really can't prove which happen first in my son. My son's POTS condition just kept getting worse and now these antineuronal antibodies have been found.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3705177/

[looneymom]

Here is the offical website of AE. This first page shares all the symptoms associated with AE. This illness is treated by several different doctors. Some of these symptoms have been associated with POTS.

https://aealliance.org/living-with-ae/symptoms/

[Jon6945]

This is good info. Thanks for sharing. I've had autoimmune encephalitis among other autoimmune neuromuscular conditions over the last several years so I understand how difficult it is to deal with.. Have tested positive for GAD65, N-type Calcium channel and GD1a antibodies which can all cause encephalitis, neuromuscular junction disorders, and many neurophyschiatric symptoms. I've tried many treatments but have not had much success. I too believe it is triggered by an infection, mostly viral and it is unfortunate we do not have more sophisticated testing and Antiviral medications available. A lot of money and research is spent on symptom manangemt medications which have a place in medicine, but in my opinion the entire medical community is missing the boat on all this... More than 3 quarters of autoimmune diseases are from Chronic viral infections that lie in nerves and tissues. I suppose if they created good antiviral testing and meds than their would be no need to fill your prednisone or mestinon prescription every month. I hate to be the conspiracy guy and maybe I am wrong but it just seems odd to me that we are not further along with the viral stuff when most of these conditions are actually from viruses. If you get to the source of a problem you don't need to take 6 different symptom relief meds and 3 more than manage the side effects from the other meds. In any cAse, thanks again for sharing.

[looneymom]

Hi Jon

Are you on any treatment right now? I have read about the rates of recovery. I understand that treatment seems to work better for children and teenagers because their immune systems have not mature yet. The antineural antibodies for strep infections have been found in my son and he matches many of the symptoms. He has more of the neurological symptoms.

[Jon6945]

I am not on any treatment right now, but have tried steroids, IVIG, and Plasmaphereisis. I may retry IVIG again and change the brand since I had aseptic meningits the first time I tried it. The plasma actually made things worse, as I suspect it lowered the immune system too much can and reactivated the viruses and infections that caused the problems in the first place. Prednisone I have mixed results with.... it helps some symptoms and makes other symptoms worse. High doses are really difficult for me to tolerate due to side effects. Its been quite frustrating trying to get a handle on it but I am hoping I can find eventually find something or a combination of things to put it in remission. It has really become a chronic type of encephalitis with bouts of really bad flare ups just like any other autoimmune.
Its good that you were able to identify these step infection antibodies. If you don't mind me asking, where did you get this testing done? Is Tyler on antibiotics now for this?

[looneymom]

My son had the Cunningham Panel done. This test is done through Molecular Labs. This test was actully designed to indicate if a patient had PANS or PANDAS. My son was very sick when he had this test done the second time and all his symptoms were extrememly elevated. However, he does not meet the criteria for either of these because his symptoms kept progressing every time he got sick with a virus or infection. His symptotoms did not show up over night. This test looks at the titers of Dopamine 1, Dopamine 2, Lysoganglioside, Tublin, and Cam Kinase.

My son is also in another study that looks for the antibodies that are found in the heart. I have been told that these antibodies were also found but not given the name of this. When this study is released I will be able to find out the name. My son has been diagnosised with POTS and antineuroal autoimmune antibodies. From research I know these antibodies are associated with strep infections, Rhumatic Fever, Autoimmune Movement Disorders, Sydenham's Chorea and Autoimmune Encephalities.

In December 2013 after seeing an immunologist in Texas, my son was finally put on antibiotics to see if these would make a difference. He kept catching strep throat and we had to keep changing antibiotics every 8 weeks. However, this immunologist did not understand POTS and was not able to continue to help with my son's care. However, our cardiologist started putting the pieces togather when we got the Cunningham Panel test in December. POTS is not something that is normally associated with these antibodies but it is more than likely making the problem worse.

In April of the year, our cardiologist put my son on Penicillin G shot to be given every 3 weeks and so far this seems to be helping with strep. My son also had his first IVIG treatment in April and has had 2 more since but none of his symptoms have improved. My son also had reactions to the IVIG. He ran a low grade fever after the first one and broke out in a rash. With the other 2 infusions, he broke out in the rashes but no fever but this is still a concern with our doctor. There are differnent brands of IVIG but the hospital my son uses only orders one certain brand. I suspect it's probably this way because there is not a board certified peds. immunologist that works there. Our cardiologist has had to take on the whole load but I appreciate this so much. He is trying to our insurance to approve Plasmapherises for our next line of treatment. This seems to be our next plan to put this stuff in remisssion.

If our insurance refuses to precertify the treatment, my husband and I have decided to ask our doctor to write a referral to get my son out to Duke. Our doctor will be more than willing to do this for us. However my son is too sick to travel this far. But if I have to get a second opinion to prove the treatment is needed this is my choice after seeing the video's on AE. Have you tried going to any of the other places that treat for adult Autoimmune Encephalities.? It may be time for a new set of Eyes to look at your case. I found an article last night about the outcome for treatment used for one form of Autoimmune Encephalities. You might be interested in this research. It gave me hope because I understand the treatment for any form of Autoimmune Encephalities basically is treated with steriods, IVIG, Plasmaphersis, and a few other medications. Hang in there and get the treatment you need. Here is the article.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3563251/

[Jon6945]

Thanks for sending over the article. There is some good information in there. Glad to see the Penicillin shots are helping your son a bit and it's good you are exploring some different treatments.

I would tread cautiously with the plasmapherisis if you do end up trying as it can really cause things to get worse if it is in fact a chronic infection driving the antibodies. Anytime you lower the immune system you run the risk of making the infection worse as their is nothing working to contain it. And you also mentioned Tyler gets sick often with infections, and lowering the immune system will also make him more susceptible to catching new viruses and infections. And there is also the issue of immune reconstitution syndrome and bringing out opportunistic infections. Immune reconstitution syndrome is a really tough deal and I had some of that following my plasma which has been really hard to bounce back from. Personally I do not think plasma is a great treatment for Pandas for these reasons, but I hate to be discouraging cause I have no way of knowing of course and it may actually help. Everyone's reaction is so differen. But my advice would be to take it slow if you try it.

I've sent some things to Mayo and waiting to hear on an appointment date. Looking forward to it and hoping they have a better idea as how to deal with all these antibodies and symptoms.

[Natops]

“Autonomic failure can occur when this autoimmune process causes sufficient damage to the autonomic nervous system. Limited data are available regarding the immune attack on preganglionic neurons or central autonomic pathways. Typical pathological changes include lymphocytic infiltrates[10] and vascular cuffing …..autonomic postganglionic and myenteric neurons can occur with antineuronal antibodies.

The best understood syndromes involving paraneoplastic autonomic dysfunction are paraneoplastic autoimmune autonomic gangliopathy (AAG), paraneoplastic sensory neuropathy, paraneoplastic encephalomyeloneuropathy, and Lambert-Eaton myasthenic syndrome…..

In Lambert-Eaton myasthenic syndrome (LEMS), antibodies against P/Q type voltage-gated calcium channels (VGCC) are present. These antibodies lead to impaired presynaptic calcium release at the neuromuscular junction, resulting in predominantly proximal muscle weakness. These antibodies not only block the voltage-gated calcium channels at the neuromuscular junction but also block them at parasympathetic and sympathetic nerve terminals, thus creating autonomic insufficiency and autonomic symptoms”

http://emedicine.medscape.com/article/1156808-overview#a0104

[looneymom]

Hi Jon

Thanks so much for responding. The chronic infection part is what worries me but our doctor cannot seem to find one. Currently, I am waiting on my insurance to approve this treatment for my son. I do have a doctor that is cautious about how much and how often the treatment will be done. From research I have learned the recovery rate is good under certain conditions. May I ask how long you have been sick with your condition? Did yours start from childhood? I understand the recovery rate may affect how long you have been sick. I hope that MAYO can be of some help to you. Keep us posted on what you find out and hope you get some help soon. It's no fun to see anyone suffer through this chronic illness that affects the the heart and blood pressures.

[looneymom]

Hi Natops

Are you dealing with these antibodies also? My son had the testing done for AGG and Paraneoplastic antibodies test done last year. Both test came back negative but I understand the testing for AGG can give a false positve result. For right now I just want to believe it was negative. Hope things are going well for you.

[Natops]

I have a paraneoplastic antibody. So sorry for you and your son. I hope he is not in any pain. I can tell by your post and comments he is in good hands with you.

[looneymom]

I found a blog on the autoimmune theory. I'm posting it because it has some reseach papers about certain virues, bacteria, and Lyme and how they seem to get through the Blood Brain Barrier.

http://angelabiggs.blogspot.com/2013/06/autoimmune-basal-ganglia-from-2.html

I will also see if I can find Dr. T's research. I have always wondered about those kids and how it all turned out. If you look at past blogs, this person has found a lot of research on autoimmune diseases.