looneymom

Thanks Gjensen. My son is going into the 8th grade. So a year or 2 younger won't really matter. He also plays some on X box live when he is up to it.

Hang in there Goschi. You will get some answers soon.

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.

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.

Here's a couple more articles. http://qjmed.oxfordjournals.org/content/96/3/183.full http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3987798/

Tyler has Minecraft game. He would like to make some new friends. Please feel free to pm me.

I found a few articles that explain moleculary mimicry and how it causes autoimmune diseases. I had a hard time understanding this concept at first and it did not make much sense. However, this concept has been around for awhile and much research has been going on. The are several autoimmune disases that will affect the autonomic nervous system and I can see why POTS specialist are beginning to think POTS may be autoimmune related. Sometimes I use the term antineuroal antibodies and these are also considered to be autoimmune antibodies. Autoimmune antibodies can be caused by virues or bacteria. They can cross over the brain barrier and can cause the neurological or psychological symptoms. I have never been a fan of the word Anxiety but I can understand why doctors are quick to jump to this conclusion. Our doctors need to be educated about the symptoms these antibodies can cause and start testing. I know that many of you are trying to find the underlying cause of your POTS so you can have a more normal life style. But trying to get doctors to check for some of these things seems impossiple. That's why I encourage you to go to a doctor that you can trust, when you are at your sickest. I say trust because too many doctors want to say your illnesses is caused by anxiety. I know "that's easier said than done". It's helpful to have a support system to get this job done. I have tried to find articles that are easy to read and give examples of illness caused by these antibodies. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3266166/ http://www.fasebj.org/content/12/13/1255.full http://hdfttp://omicsonline.org/autoimmune-disorders-an-overview-of-molecular-and-cellular-basis-in-todays-perspective-2155-9899.S10-003.p http://www.iom.edu/~/media/Files/Activity%20Files/Research/VaccineAdvEffectReview/2009-JUN-24/05-Cunningham.pdf http://ndnr.com/pediatrics/molecular-mimicry-in-pediatric-diseases/

Sara Hang in there. Hope your doctors can get to the bottom of your problem. Post when you can.

Oh Becia Bless your heart. Are they going to keep you for awhile? Are these new or old symptoms? Some of the symptoms that you have mentioned in the past don't belong to POTS. Maybe you can encourage your doctors to look at some other medical conditions that have the autonomic symptoms involved. Hang tough and post when you can. Sending gentle hugs.

Hope you are doing much better Melanie! Post when you can.

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/

From what I understand this is a POTS symptom. Are you on any medications to help with this?

Becia I needed this humor today. Thanks for making me laugh. Tyler has had few rough days. He has been fighting a virus which has made him more wobbly. Wheelchair transfers have been a little rough.

That's next week. Your team is doing good to get you in that quick.

I appreciated the fact that this article did bring up the hormone issue. This indeed affects POTS and patients cannot control these. However giving the psych meds. to help is not the answer either. My son was given these types of medications when he was having a headche early on. These medications made him worse and caused other horrible side effects. Of course when you have a young patient, your doctors want to blame everything on Anxiety.

Wow! Sounds like someone is going to help you figure out what's going on with your POTS. Happy for you. My son had the Qsart done at MAYO but he never mentioned that it was painful. So will they call you on your other test results or will you have to wait until you go back for your next appointment. I always hated waiting on test results for my son. Glad the appointment went well and sounds like they are going to be great with getting the testing done.

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.

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/

Thanks for sharing. Good video with useful information.

Don't worry about dysautonomia right now. I know this sounds scary but be thankful your doctors are getting the problem figured out. So many things over lap dysautonomia. Think positive because you do not need any added stress to your situation. Are you having the MRI today?

My son has been seen by a couple of neurologist since MAYO and no one was interested in doing this procedure. Our cardiologist has even referred my son to a neurolgist that he thought would do this procedure. The neurologist would not consider it because she thought my son's symptoms were due to anxiety. That's one of the problems that we ran into because of Tyler's age.

For my son, our cardiologist wrote the prescription. My son's condition got worse after he had the flu in January of 2013. He went to physical therapy for 6 months and was unable to regain his strength and mobility. With the testing and documentation from our physical therapist, our insurance paid on the wheelchair. We had to have proof of why he needed the wheel chair. He has one with powered wheels. My son does not have the strenght to push a manual wheelchair. The testing for his antineuronal antibodies was done last year after he had the flu. Not many doctors will test for these things unless your life is endangered. The symptoms from these antibodies can keep progressing and eventully cause encephailities. BTW I tried to send a PM but your box is full.

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/

It's the only thing that does help. He has been tried on a few other medications but they will not keep his blood pressures up. He has had the QSART test at MAYO and it was negative. Our cardiologist does suspect neuropathy pain is a major problem but have not found a neurologist willing to do the biopsy for the other.

Is this the underlying cause of your POTS or is there more to uncover yet? Hope you get some relief with your new meds. BTW, Which MAYO clinic did you see? What state?