Can Pots Be Brought On By Any Type Of Antibodies?

[looneymom]

I don't know if this applies to anyone else on the forum but I thought I should share what I have learned about Tyler's condition. In August, Tyler was checked for the PANDAS antibodies and they were in the gray area. This test identifies 5 antibodies that are associated with PANDAS. They were not negative but the were not in the likley catagory. Before Tyler had this test, he was on a 5 day Z- Pack, which should be out of his system in 10 days. He had this test 3 days after the 10 day period. The doctors did know that Tyler had been on this Z- Pack. The irony is that this medication is being used in a study in Floriday to see if it will help PANDAS symptoms. Since Tyler had the symptoms of PANDAS, the md doing the research decided to take him on for the study.

In October, Tyler got a double ear infection. He was put on 2 different rounds of antibodies before his ears actually got cleared up. However, since this illness, Tyler's pain levels and sensitivity levels have went through the roof. He still cannot stand to have a blanket on a night. Tyler saw his cardiologist at the end of this month and he had the blood work done for the study. More testing was done and high neruonal signaling showed up in blood work. The test for the 5 antibodies that are associated with PANDAS has also been reran. The antibodies this time are sky high, POSITIVE for PANDAS. However, Tyler cannot be diagnosied with PANDAS because PANDAS is not a progressive disease. PANDAS symptoms are supposed to happen all within 48 hours with severe OCD symptoms. All of the doctors agree the Tyler does not have OCD symptoms so now they have to figure out what to do with these high levels of antibodies in his brain that does not belong there.

We are getting closer to some answers. Tyler will be going to see a peds. immunologist in December. Hopefully he can shed some more light on this and run some other testing to nail the final diagnosis down. With our experience, I just wonder how many of you are suffering because of some unusal high antibodies. Our biggest clue in Tyler's POTS, was that he would just go down hill more and have more symptoms after an illness. Keep pressing your doctors for testing and answers. Hope everyone has a wonderful and Happy Thanksgiving.

Rachel

[sue1234]

Thanks for that info. Yay, y'all have solid clues!! Do you mind telling us what tests they were?

[Katybug]

Hi Rachel,

It wouldn't surprise me if high levels of any type of antibody could cause dysautonomia based on the inflammatory processes that are involved in the immune system being that active. I truly believe that anything that causes inflammation has the potential to cause dysautonomia. It seems like everything I read as far as route cause for pots is somehow related to inflammation.

[looneymom]

The Cunningham panel is done by Molecular labs, Inc. There is a web site for this lab and a cost for this test. However, I understand that other labs have been approved to run this test and can be ordered by your doctor. Some insurances will also pay for the test. This test measures the following antibodies: Dopamine D1, Dopamine D2, Lysoganglioside, Tubulin, and CaM Kinase.

I'm also wondering what other autoimmune diseases these antibodies can be found in, since Tyler is most likely not going to be diagnosed with PANDAS. I've started doing more research to see what I can find.

My husband and I want to get Tyler started on Colostrum. What over the counter brand has anyone used? We would like to try and boost his immune system. IVIG has many side effects and we are really not excited about going this route. If you have found a brand that seems to work well, please share or feel free to p/m me.

Rachel

[E Soskis]

There are a number of antibiotics that have neuro-toxicity as a side effect. Anyone with dysautonomia should carefully query their MD before taking an antibiotic to find out if it is neurotoxic. Unfortunately, some of these antibiotics are the most effective at killing some big-time bacteria that could actually cause more damage to the nervous system than the actual drug does.