looneymom Posted May 18, 2014 Report Share Posted May 18, 2014 Some in the past, some have asked about the Paraneoplastic Antibodies Test. This test checks for several different antibodies in the brain. Tyler did have this test run but it did not cover everything that was mentioned in this article. This article was really good to explain the symptoms and explained the different types of encephalities associated with the antibodies. If anyone is dealing with these antibodies as an underlying cause of their POTS, it's well worth the reading. The doctor that Tyler saw in Texas diagnosied him with unspecific diagnosis but Post Strep Encephalitis is a pretty close match. The second article is the study that Tyler has been involved with and the first part of this study was released in September of 2013.http://pandasnetwork.org/wp-content/uploads/2013/07/Autoimmune_encephalitis.pdfhttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/ Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 19, 2014 Report Share Posted May 19, 2014 That first article is very detailed with good information. The second article is interesting, and I hope Tyler gets benefit soon with his IVIG to clear it up.Reading all those signs/symptoms in the first article make me so sad. I think of the "psych" patients that get incompetent medical diagnoses. They receive meds that make them less of a nuisance, but look at all the autoimmune disorders listed in that article that produce psych issues! Those psych patients cannot cognitively research like we do for possible causes, so they will most definitely slip through the medical cracks for possibly the rest of their lives. I'm sure there might be a rare doctor that recognizes the changes and thoroughly tests them, but I'm sure it is rare.I have some of those symptoms, and some I have never had. It still makes me wish I could be tested for MANY different autoimmune markers. Quote Link to comment Share on other sites More sharing options...
Raisin Posted May 19, 2014 Report Share Posted May 19, 2014 Wow. I had several tests. One for paraneoplastic and some Tests searching for autoimmune but this shows many many antibodies that certainly weren't included in my tests. Do you think some doctor/doctors out there would look at all of these? And then would that be an immunologist? Some folks, I believe, could really be helped by this, eh? Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 19, 2014 Author Report Share Posted May 19, 2014 Hi Rasin,A good neurologist should recognise these encephalities symptoms. Some doctors of other specialities are famiular with these symptoms but they may not know what test to run. The doctor in Texas could not run a test to confirm the encephalities in Tyler because of our insurance. However since the antibodies showed up in Tyler's heart and brain, this was our key to what was causing his POTS and his neurological symptoms. When Tyler was in the hospital for his 10 day stay, they ran an enchephalitis panel but it never covered many of the types mentioned in the article.. An immunologist could help find some pieces of the puzzle but not run the major test. Tyler's autoimmune antibodies were found by a research doctor. These auto- immune antibodies can cause so many problems. I just wanted to make sure this information got out because people on this forum are suffering so much. These antibodies affect nerve signaling and cause neurological problems.Research is showing that the antibodies are most likely caused by infections or virus. However, I'm having a hard time of understanding how they get past the brain barrier. Which makes me wonder about the term leaky brain barrier? If our brain is not protected that means a lot of things can get in that's not supposed to be there. Quote Link to comment Share on other sites More sharing options...
Natops Posted May 19, 2014 Report Share Posted May 19, 2014 Wow! That first link was so informative. Thank you for posting and sharing! All I do all day is study about paraneoplastic antibodies (because I have one). Thank you so much. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 19, 2014 Author Report Share Posted May 19, 2014 You are very welcome. This is the most informative article that I have found. The other thing that I want to point out is if anyone has been found with these antibodies it does not necessary mean that you have some form of encephalities. If the antibodies keep multiplying it can go this far but they can cause neurological problems and other symptoms. With Tyler, his symptoms get worse after he gets some type of infection or virus. Quote Link to comment Share on other sites More sharing options...
Raisin Posted May 20, 2014 Report Share Posted May 20, 2014 I feel so much for all of us who are searching and searching. I am grateful for this support. Sometimes I get so sad. I pray for all who are affected by Dysautonomia. We need docs who are able to see us as "zebras" and are invested in getting to the bottom of this. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 20, 2014 Report Share Posted May 20, 2014 Totally agree, Raisin!! Quote Link to comment Share on other sites More sharing options...
xRobin Posted May 20, 2014 Report Share Posted May 20, 2014 Research is showing that the antibodies are most likely caused by infections or virus. However, I'm having a hard time of understanding how they get past the brain barrier. Which makes me wonder about the term leaky brain barrier? If our brain is not protected that means a lot of things can get in that's not supposed to be there. Hi, looneymom. I don't have a background in science so I hope I'm getting this right and not passing on incorrect information. Maybe some one else can correct me if I'm wrong or explain better. But, a friend of mine who is a scientist explained once to me that when the body goes into action immunologically to fight an infection, it sends out cell signals called cytokines which are an inflammatory response (I think these are invovled in antibodies somehow). These are picked up by the vagal nerve which signals to the brain that the body is sick, and that's where symptoms come from. I think he called it a mirror response? The signalng cells don't cross the barrier but the messaging does.I have chronic fatigue syndrome, and recently there was a PET scan study showing brain inflammation. He hypothesizes that it is a mirror response (if replicated) from infection. Quote Link to comment Share on other sites More sharing options...
Natops Posted May 20, 2014 Report Share Posted May 20, 2014 Your right Lmom. Just because you have these antibodies doesn't mean you have encephalitis ... I certainly don't think I have encephalitis... But from the research I done ... Many encephalitis patients share the same antibody (calcium channel n-type) I have ... Which is kind of scary. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 20, 2014 Author Report Share Posted May 20, 2014 NatopsDo your symptoms get worse if you get the flu, virus, or some other type of infection? I just wondering if this is a normal type response if a person has any of these antibodies in their system. BTW what type of treatment are you getting from your doctor?xRobinThat's interesting. I will research and see if I can find some more information. My son will see his doctor this weekend because he is having his second round of IVIG treatment. I plan on asking his doctor some more questions about these antibodies that have been found in his brain and heart. I know the antibodies have been caused by a past infection but I'm pretty curious where these things hid out in the body. Can't wait to get them out of my son's body but I have been told this could be a long haul. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 20, 2014 Report Share Posted May 20, 2014 XRobin,You are partially right...that is how most infectious agengts work. There are, however, some nasty little organisms that have the capability of crossing the blood-brain barrier and actually infecting brain tissue. Lyme organisms are one example of this.Rachel,As Lyme is one of the infectious agents that can directly infect brain cells, that might be an easy place to get some info on how certain organisms are able to cross the blood-brain barrier. I'm not implying Tyler does or did have Lyme, just that Lyme is a hot topic right now so there's lots of info out there to use for resource material. Quote Link to comment Share on other sites More sharing options...
issie Posted May 20, 2014 Report Share Posted May 20, 2014 Yes, see post I just put on.http://forums.dinet.org/index.php?/topic/25587-something-to-consider-in-regard-to-antibodies-and-another-pots-person/Issie Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 20, 2014 Author Report Share Posted May 20, 2014 KatybugEver since I saw the Gluten eposide on Dr. Oz, I have wondered more and more about the leaky brain barrier. You are right about lyme. Tyler has been checked with reliable testing (IGNEX) for this and other coinfections. Our doctor got very concerned and we had it rechecked again this year. It all came back negative. Thank goodness. This is one thing we can finally check off the list for good. Test results came back yesterday. The antibodies that have been found in Tyler will also cause neurological problems simular to Lyme. However, the treatment is much different and not everyone responds to the same treatment plan.Since Tyler has the heart antibodies, the doctor has told me that these are the ones to be concerned about first. The antibodies that have been found in the brain will happen because of the infection that was caused the heart antibodies. Strep is the cause of these antibodies. I just wish I had doctors that would have recognised the rhumatic fever when it happened.Tyler will be having another round of IVIG treatment this weekend and then he is going to start a gluten free diet to help take the load off his immune system. Our doctor does not think Tyler will have to do gluten free for ever but it should help boost his immune system. If it helps with any symptom, the diet will be worth the effort.IssieThanks for the new post. Quote Link to comment Share on other sites More sharing options...
issie Posted May 20, 2014 Report Share Posted May 20, 2014 There are other protozoa that can be even worse and more widespread than Lyme. Delivered not only by ticks but also mosquitoes. It requires a special high powered detection device and stain to see. Dr. Fry says this one can invade the entire body and he feels is the cause of most of our problems. Treatment is the same as for Lyme and co-infection and also malaria. With diet being the main focus? It has to be low fat, whole food vegan. As you can see from my other post, with autoimmune dysfunction, animal proteins in any form, could be a problem.Issie Quote Link to comment Share on other sites More sharing options...
Natops Posted May 20, 2014 Report Share Posted May 20, 2014 Anytime I am sick with a virus or cold - my symptoms are way worse... I'm betting my antibody count goes up as well because my immune system is on overdrive. Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 20, 2014 Author Report Share Posted May 20, 2014 NatopsThis makes sense because this is what happens to Tyler. Too bad there's not a simple and inexpensive test to measure the antibodies in the body when this happens. I have heard from other kid's parent's that have a simular condition to Tyler's that their kid's symptoms also increase when they get sick. Getting the antibodies out of the body is the key to getting well. Trying to keep the body well and boost the immune system is another key factor in all this. Quote Link to comment Share on other sites More sharing options...
Psalm 23 Posted May 21, 2014 Report Share Posted May 21, 2014 Rachel, thank you so much for sharing the informative articles. Like Natops, I also am positive for the N-type Calcium Channel binding antibody which has been associated with autoimmune encephalitis. I do not have that condition however but am left with many unknowns. The presence of this particular antibody can be a marker for cancer or an autoimmune process if cancer is not detected over a period of time. An association with autonomic nervous system conditions would appear to be unclear which makes it really difficult to determine if it could be the cause of some individuals POTS like mine. The possibility of neurological autoimmunity is mentioned in lab interpretations though.I'm so thankful for you and Tyler that a cause for his POTS was determined. Bless you for your persistence and fantastic mothering. I pray the IVIG proves successful. Janet Quote Link to comment Share on other sites More sharing options...
issie Posted May 21, 2014 Report Share Posted May 21, 2014 Katybug You are right about lyme. Tyler has been checked with reliable testing (IGNEX) for this and other coinfections. Our doctor got very concerned and we had it rechecked again this year. It all came back negative. Thank goodness. This is one thing we can finally check off the list for good. Test results came back yesterday. The antibodies that have been found in Tyler will also cause neurological problems simular to Lyf his immune system. Our doctor does not think Tyler .http://www.treatlyme.net/treat-lyme-book/a-review-of-lyme-infection-tests-pass-or-fail.htmlOne doctors thoughts on the reliability of Lyme test and why.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted May 21, 2014 Report Share Posted May 21, 2014 Hi Rasin, Tyler's autoimmune antibodies were found by a research doctor. These auto- immune antibodies can cause so many problems. I just wanted to make sure this information got out because people on this forum are suffering so much. These antibodies affect nerve signaling and cause neurological problems.Research is showing that the antibodies are most likely caused by infections or virus. However, I'm having a hard time of understanding how they get past the brain barrier. Which makes me wonder about the term leaky brain barrier? If our brain is not protected that means a lot of things can get in that's not supposed to be there.Antibodies indicate that there IS an infection or problem. They attach to that problem in order to help the immune system fight it off. If there are antibodies, the immune system has put them out to try to fight something off. Having them may be a good thing, unless the immune system is in over drive and attacking the body. Finding out why you have them ìs the goal.http://www.morphosys.com/technologies/antibodies/functionhttp://biology.about.com/od/molecularbiology/ss/antibodies.htmIssie Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 21, 2014 Author Report Share Posted May 21, 2014 Hi Issie,The last antibodies that were identified in Tyler's body are antibodies that are found in patients that have had rhumatic fever. It has been very hard trying to understand how this has happened to Tyler but I cannot argue about what has been found in recent test results. I did email and ask our cardiologist about how these antibodies get there. They accumulate through a strep infection. Whenever Tyler had this major infection, the infection did not get shut down becaue he was not on antibiotics long enough or possibly even strong enough.Through research, I understand that strep can hide in the body and in the joints. The more I read this research it does sound like this turns into an autoimmune disease. These antibodies can cross over the brain barrier and do cause neurological problems. As these antibodies accumulate in the brain, more neurological symptoms can accumulate. Which explains to us why Tyler kept getting worse and why other symptoms started showing up. Treatment for this illness includes IVIG, PEX, and penicillin. My husband and I are satisfied that we are on the right track with Tyler's illness. Tyler has these antibodies because of strep bacteria. He is getting a penicillin shot every three weeks and will be having IVIG every 4 weeks. Here are the articles and the references at the end of these articles are very interesting. I have starting looking at some of these. The second article is huge but the section on Rhumatic fever is very informative. Happy reading.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3645882/http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88944/ Quote Link to comment Share on other sites More sharing options...
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