looneymom

Just wanted to give you an update on Tyler. He saw his cardiologist on Friday. His POTS is immune related and has been caused by strep and mycoplasma infections. If these infections are not taken care of then the antibodies will form and cross over into the brain barrier. When this happens, it can mess up so many body systems. These antibodies are found in the plasma and this is the reason why Tyler is having to do the plasmapharisis treatments. This is the only known treatment to get them out of the body. Tyler wishes this cure would provide immediate relief but the problem is that Tyler has been sick for a very long time. Tyler has had some of his symptoms for 7 years. The CamKinese, Dopamine 1 and Tublin can cause neurological symptoms, heart failure, vocal tics, speech problems and many other symptoms. Tyler is going into his 3rd week of 3 week treatments again and I am beginning to see some of the small changes come back that I saw when he did the first round of three a week treatments for 3 weeks back in August. His tremors are less, his hoarse voice is gone, his strength and stamina is much better. He is able to do a few exercise without having tremors start. However, our doctor did tell us yesterday that Tyler may have to do the 3 a week treatments for much longer than 6 weeks. Tyler regressed very quickly after he went down to 2 treatments a week in the month of September. His immune system was not strong enough to over come the antibodies. The antibodies started building up and he started sliding back. It was heart breaking to see him go backwards. However, as long as he is making progress and getting better with 3 treatments a week, my husband and I don't care how long this treatment plan takes. The hard part is living away from home. We are staying at the Ronald McDonald House but I don't miss traveling the 300 miles a day 3 days a week. We did this the first weekof treatment until a room became available. Our cardiologist also talked to us about Dr. Kems OU research. Tyler was too young to get into his study but his testing is going to be availlable soon through insurance. This will be the next testing for Tyler. Our cardiologist does believe his testing will come back positive and seems to think other possible antibodies are involved in his condition as well. He said that lots of POTS research going on in Oklahoma and Vanderbelt. All of this research should benefit everyone on the forum. Vanderbelt does have some adult studies going on with some other antibodies. I have not had time to do a search but I will start researching again. BTW the flu season is here in Oklahoma. Our doctor has told us to get the flu shot not the flu mist. The flu mist is a live virus.

My son just saw his cardiologist yesterday. He told him to get the shot since his POTS has been connected to his immune system. No live virus needed. My son took the shot last year and did not catch the flu. He took the shot in January of 2013 and 10 days later he caught flu A . Four weeks later, he caught flu B. My only advice is to get the shot and not wait until full blown flu season.

Hi Katybug Tyler has been in this situation for awhile. I asked about a meds the other day for him when he had an appointment. with the doctor. Our doctor looked up the meds (Sodium Vaporate) and he was tried on this medication when he saw the headache specialist several years ago. Tyler has been tried on about everything and our doctor is being extremely careful about adding any new meds at this time. However, I will be asking about the medication that Blue mentioned. Tyler does not have bad allergies but high histamine levels in his system. So I am wondering if this other medication might be worth trying.

Hi Nymph Sorry the ALA did not help. Does anyone know what is causing the burning tongue? Could you have developed food allergy or an allergy to a medication?

Tyler was taking 5mg of predisone a day but our doctor is raising it up to 10mg this week. Last week very tiring due to all the driving time (300 miles round trip) M -W-F. RMcDonald house finally had a room available and we were able to stay Friday night. We will be able to stay here since the doctor has bumped Tyler up to 3 treatments a week. I started seeing changes in Tyler after he went down to 2 treatments. So the plasmapharisis was beginning to help with some symptoms. He will be doing 3 treatments a week for the next 5 weeks. If we see progress, I am hopeful that doctor will let Tyler stay on this schedual for a little longer before drop he drops him down to 2 treatments a week.

Hi TCP, Our cardiologist has told me that this is a very hard thing to treat and it does go along with POTS. Unless you can really figure out what is causing it, you are kinda stuck with it. I keep hoping my son will get some relief with his current treatments. If it's something autoimmune and the body keeps allowing it to go on, it's hard to stop the cycle until you find the right medication or treatmen to block the cycle. There are several medications out there to try but until you find the cause, you may have to live with it until research catches with POTS. This is a bad deal for anyone that is having to deal with neuropathy on top of POTS. Here is an article that discusses peripheral nerve pain. I believe this is what my son is having to deal with. http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

Does predisone build up in the body? I found out that it has the same affect on my son at a lower dosage. A good affect so far, but can it build up in the body? If so, What might be some of the side affects if this happens?

I would tell you to be careful with adding medications. My son is extremely sensitive to some of the meds you mentioned. Lyric caused his heart to race. I would tell you to start with the lowest dosage possible and then move up gradually. The worst part about POTS is that you have no idea how these medications are affecting hormone or neurotransmitters levels in your body. When my son is overly tired, his symptoms do get his worse. It's been a real balancing act for us.

Try again. I was able to get to both articles just now.

My son has a wheelchair now. My husband and I held off for a good while ( 2 years) before we came to the conclusion this was going to be a necessity for my son. My son did have a few good months that he could get up and walk. However, he could only walk for about 10 minutes and then his tremors would start up againl So getting out of the house and doing an all day family activity was impossible. My son does not have a lot of upper body strength and he worked with physical therapist for several months to try and regain it. Our doctor wrote the prescription for the chair but the physical therapist had to write up the documentation of why my son needed the wheelchair with powered wheels.

Well my son was starting to make some progress. He was doing 3 treatments of PEX a week and showing improvement in a few areas. His hoarse voice and speech problems disappeared totally when he was doing 3 treatments a week. His tremors kept getting less and less and he was able to do a few exercises without the tremors starting. The doctor wants to get him back to this baseline. When he went down to 2 treatments the beginning of this month, his hoarse voice and speech problems came back, his vocal tic started increasing, and his tremors are worse. He told us we would see small changes at first and he was right. I had know idea how small they would be but it was worth the wait. The small dosage of predisone has helped with moods. He is perkier and more talkative. Starting this next week, he will be doing 3 treatments a week for the next 6 weeks. Can't wait to get back to that base line.

Rechecking D, iron, B vitamins might be in order for blood work. Hopefully you have not been exposed to Mono. Adults can still get it. I had it when I was 28 and I was teaching in a room of coughing kids. The University of Maryland has done a study and found out that this virus could be caught in this type of situation. My oldest son was in this situation a few years ago and the same thing happened to him. Mono is hard on the older teenagers and adults. You are tired even after a night's sleep.

Here are a couple more articles that might help you understand this connection. https://www.med.unc.edu/tarc/events/event-files/strep%20and%20ARF.%202012.%20curr%20opin.pdf This next presentation has videos of the movement disorder. http://prezi.com/gc9jyeddogab/copy-of-rheumatic-chorea/ This is my son's autoimmune connection to POTS. Tyler worst ordeal through all of this is when he started rolling back and forth and lost his ability to sit up. Before this happened, he had an elevated white blood count and a sore throat. More than likely he was having a relaspe but no one released at the time realized what was causing it because he would not test positive for strep.

Sorry Katybug but I would not give up. I would chase the strep down and see if that is the connection.

Thanks Rich for answering that question. Now it makes more sense becaused he tried taking it during the day time and his blood pressures would not stay up when he was sitting up.

I knew it was coming. Here is the research. The possible strep and OCD autoimmune connection in Adults. http://bjp.rcpsych.org/content/early/2012/01/18/bjp.bp.111.092007.full.pdf

I found this study very interesting. It does lower NE levels. Tyler takes this a night and it does not affect his blood pressures but he does have high NE levels and dopamine levels. http://hyper.ahajournals.org/content/8/7/611.full.pdf+html

Katybug, I have another thought. You mentioned that you have sore throats quite often. Do you have throat cultures done when this happens? I have also learned that you can order the rapid strep test cultures online. I know some parents that order them for the kids. Another way you can determine if you have had strep problems in the past year is to have a Anti-DNase B Strep Antibodies test done. If the antibodies show up out of range it means that you have had strep infections in the past year and hopefully you got the treatment for it. If you have had strep culures that are negative and this test shows up positive, then your nurse is not doing a good job of swabbing the throat. Tyler had this test done and that's how the doctor caught on to the problem. Tyler had this testing done through LabCorp.

Katybug, Sounds like you are going to get some answers. Are you on any treatment for Lyme? If Lyme is still present in the body, it can cause changes like this in the immune system. I have read this just through research. I didn't save the articles. Sorry. Did the immunologist run a CD 57 test? This test is used by Lyme doctors to determine how the immune system is functioning. I'm not much help for you on this topic but I hope you have a good doctor's visit on Tuesday. Keep us posted.

My son has tremors and it most likely is related to high Cam kinese and dopamine levels. I was actually doing some research today and found a thesis on Cam Kinese and parkinsons disease. It was very interesting. Maybe the information will be helpful to someone else. http://etd.library.vanderbilt.edu/available/etd-07252007-155530/unrestricted/AbigailBrown.pdf

Hi and welcome to the forum. Sorry to hear what you are dealing with but you will find plenty of support and information on the forum. The best thing you can do for yourself is find a specialist to help you get through this illness. Hopefully you will find someone close by.

Which clinic in what state? I took my son to Rochester Mn and he saw a specialist there. They did all the typical testing. The clinic at Arizona was really good with adults. There were some really good post on the forum about the care they provided. Do a search for MAYO and you should pull up several post on the MAYO clinic.

Hang in there Becia. Do you know how long you will be staying? Just keep a tight rein on your doctors and communicate with them.

I plan on asking the doctor about it. I have actually found studies that in very low dosages it helps with allodynia. However, I have also found research studies that high Cam Kinese II levels cause allodynia. I can't wait to get this stuff out of Tyler's body.

I have found another article that may be of some help. I am hoping that my son is going to get some relief from his scalp allodynia with his current treatment. But as I am reading, neuropathic pain is harder to treat the longer it goes on. This article goes into more detail about about the brain receptors and other medications that can be used. BTW Has anyone tried Ketamine cream or through an IV? http://www.helpforpain.com/articles/understand-neuropathic-pain/understanding.htm