looneymom

I looked for the article but could not get my hands on it. I would take a copy of the abstract into your doctor. They have access to all those medical websites. It is helpful to be able to read the abstract but much better if you can read the article. I am really wondering how much of POTS could be related to these antineural antibodies. BTW, have you found any more answers to your POTS? Any new medications making a difference?

Our cardiologist did mention that this was tempory and was hoping my son would not have to have a permant one. I will look up the "necklace graft". I'm glad to hear the plasma exchange has allowed you to be functional and able to work. Our cardiologist believes the plasma exchange will allow my son to be more functional but is not certain how long he will need the treatments. The type of antineuroal antibodies that have been found in my son have also been found in patients with autoimmune movement disorders and rheumatic fever with Sydehams Chorea.

Hi and welcome to the forum. It is important for you to find a doctor to help you sort this out. My son spent 10 days in the hospital before being diagnoised with POTS by our cardiologist. My son was started on the normal POTS medications and did not respond to them. After being on them for more than a year, our cardiologist started sending my son to different specialist. My son had many different symptoms and some of them did not belong to POTS. Our biggest clue was his immune system. He was seen by an immunoloigst when he happened to be sick. His T helper cells would not come out to fight infection. So when my son would get a virus, infection, or flu, his medical condition kept declining. My best advice is to go see a specialist that specialises in your worse symptom. What you have to keep in mind is that your worst symptom may be a part of other diseases which will lead you to see other specialist. A good gp should be able to rule out the basic stuff but if they come to a dead end then you will need to seek out the specialist. My son has been through tons of testing and his underlying cause is antineuroal autoimmune antibodies that have been caused by virues, flu, strep, and mycoplasma p. His last testing revealed the antineuroal autoimmune antibodies that are caused by strep bacteria. Strep bacteria is know to cause heart problems. When I first started using this forum, I would do many searches on many different illness and most of them would show up. There is a wealth of information about testing and specific illnesses that our members have written about in their post. I wish you well in your searches and don't hesitate to ask questions. Many members on the forum are searching for underlying causes, some have learned to mange their POTS very well with medication, diet, and exercise, and some like my son are trying new treatments to get the underlying condition under control.

I am very concerned and have been for a long time with our healthcare system. Many of you have struggled to get the medical care that you need and still do not have it yet. We need better healthcare for everyone no matter what their age or their heath issues may be.

They do make wheelchairs that recline. Tyler does not have this type right now. If Tyler sits up with legs down, his body might be able to tolerate it 10 to 15 minutes. His legs and feet turn bright red or purple. If he lets his arms hang straight down, the same thing happens. I have also seen this happen when his arms are in a natural sitting position and I have to encourage him to move them around to get the circulation going. This is a problem with POTS. Are you still in the hospital?

Tyler is going to be having this done in August. So this mom is feeling really nervous right now but glad that insurance has approved the next step of treatment (Plasma Exchange). The more I read about Rheumatic fever and Sydenhams Chorea symptoms, I am feeling better about our next treatment plan. Whatever caused these antineuroal antibodies to found their way into Tyler's body, they have got to come out. I feel for so many of you because like me, you just want this POTS issue to go away. Even with this treatment, Tyler's POTS may not go away because we may have more than one medical condition. Our cardiologist does seem to think that Tyler has had Rhuematic fever but it is unsual for the tremors to still be going on. This symptom itself may be a sign of damaged nerves that may not reverse itself. However, time will tell with this next plan of treatment. If you have a central Tunneled line, how long does this line last before it has to be replaced? How long did it take you to feel comfortable about caring for your line? I'm nervous about this part and thinking about asking our doctor to send out a home health care nurse.

Interesting abstract. I'm wondering what antineuroal antibodies were found. Like you, I have a hard time of getting some of the articles that I want to read on Tyler's condition. The medical community has danced all around the topic of proving these antineuroal antibodies do in fact cause some autoimmune diseases. I will be glad when someone can prove it does cause these problems and that patients can get the medical treatment and testing needed.

Welcome to the forum. So glad you have found ways to get your POTS condition under control.

I found another article that's easy to understand. Molecular mimicry has been a very hard thing for doctors to figure out but I do think this is part of my son's medical condition. Doctors are beginning to connect some autoimmune dieseas to this and hopefully getting the right treamtment will become easier for us in the next several years. http://www.japi.org/march_2010/Article_05.pdf Edit: Here is new study on GB with a virus that causes it through molecular mimicry. http://www.jidc.org/index.php/journal/article/view/21727645/565

Hope the new home situation will help with your POTS condition. Keep water and fluids going, Take breaks often. Moving and packing is hard work. Sending prayers and cyber hugs.

Thanks for sharing.

Thanks Chaos

This article was a real eye opener. I did not realize what tremors or movement disorders could be caused by. If this symptom has showed up with your POTS, this article might shed some light on what the tremor might be related to. http://www.ucdenver.edu/academics/colleges/medicalschool/departments/psychiatry/PsychEducation/interdepttraining/Documents/movement%20disorders%20in%20medical%20disease%20sem%20neurol%202009.pdf

You know this would explain why some patients do better with brain activities later in the day. I would think some of the brain neurotransmittes would play into this also. This last year during school time, it took Tyler awhile before he coud just get focused and started on school work. His school year before was not nearly as bad. Please post that research if possible. I would really like to read it.

Hi Becia As I read through your post, It made me think about some experiences that I had with some of Tyler's doctors. Tyler basically has one doctor now that is willing to deal with his medical condition. Your GP and cardiologist seem like they want to help but feel really overwhelmed by your situation. Do you think your GP would be willing to run other testing if you were able to find articles that matched your worst symptoms that are also associated with POTS symptoms with the understanding that your GP could send you to another doctor that specializes in treatment for that specific illness? (Sorry about run on question). If you coud get this kind of help with testing, you might could get a handle on all of this. I also know this is easier said than done. In my son's situation, it took about 2 years with my cardiologist to realize that my son's medical condtion was something more than just POTS. However, our cardiologist tested for things that POTS symptoms could show up in. Your GP could probably do more extensive testing than your cardiologist. If you could go this route with your GP, you might coud get some more answers. I had to go this route with my son's cardiologist and it's been worth the effort.

If you just have POTS and nothing underlying that could be causing it, that will be so much better. My husband and I were were so hoping that this was the deal with our son. Have the doctors let you know about any other test results? I know that some of these results take awhile to get back and waiting is the hard part. Have they asked you about family medical history? That's one thing our cardiologist did in the beginning because heart disease runs on my side of the family. I'm hoping I did not pass thoses genes on to anyone in the family. I have wondered though if POTS was a gentic thing but can't find to much research on the subject. In adults, our cardiologist strongly believes there is some underlying causing POTS but he would rather work with the kids because they normally out grow this stuff. However, I know there are several people on this forum that had these symptoms in their teenage years and have not outgrown it yet. Which is quit concerning. Hope today goes well and that you get some answers soon. Keep posting and enjoy the food.

This article was written in 2009 and explains the different types of vasculites. Tyler's doctor has said that this is part of his condition and it is hard to treat. Treatment options are mentioned in the article. http://www.actaneurologica.be/acta/download/2009-2/04-Finsterer.pdf

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.

Hi and welcome to the forum. Hang in there. POTS is not an easy thing to deal with but having a good doctor with experience does help.

Becia Side effects of medications are no fun. I have had to stop some medications after the first dosage with my son. If the body is not going to tolerate it, then your doctor needs to know how your body is reacting.Hang in there, you are not giving up just because your body cannot tolerate the medication. It sounds like more testing needs to be done so you can get to the bottom of your medical condition and get the right treatment. Only you can be the judge of what your body can tolerate not the doctor. Sending gentle cyber hugs.

This is an easy to understand article about POTS. Many of the references at the end of this article can also be found online. http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

Here is another article that deals with GB and molcular mimicry. This articles talks about specific viruses and bacteria that can be associated with GB. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1698092/

Good for you! Enjoy your new freedom but remember to balance work and down time.

Hi Becia, The more doctors you have involved, you tend to run into this problem with the medications. This got to be a problem for us last year after my son had more symptoms show up after the flu. Our GP and neurologist tried to add a few medications to help these symptoms but they made things worse or we saw no improvement. Needless to say if it did not make things better or made things worse, my son did not stay on the medication. You will have to be the judge to decide if the side effect is worth staying on the medication. No one wants to suffer severe symtoms or be in any more pain than necessary. But if a side effect of medication makes something more tolerable in your condition than it should be your decision if you want to remain on this medication. Just make sure the medication is not going to cause you more problems in the long term. My son was also on Flornief for a long time and I always thought it was helping him. However, because of his headache and other symptoms, our doctor took him off of it to see if it would make any difference. When I took him off of it, it made no difference in his symptoms and no difference in blood pressures. He was also on the same dosage as you are. In the beginning this medication seem to help him, but now it has no effect. So we assume his body outgrew it's usefulness but don't know why. If you are still able to stand up and walk around some, it may help with that function. My son has not been able to do that for over 18 months. It's fairly easy to get discouraged when you are not getting relief with any new medications. I would advise you to check with your doctor and ask about how soon you should be able to tell a difference with your new medications. When you feel like you have given the medication a fair trial, it's time to move on and explore other avenues of treatment.

The psychological part of POTS is not new by any means but you have to get your doctors to see past this is part. There are so many things that will cause problem. After you are sick for so long of a period and doctors cannnot find a reason for your illnesses they have a tendancy to stop looking and give up. When this happens, you wind up having to look for a new doctor and start up all over with more testing. With my son, it was good to have a physical therapist on our team. My son was seeing her 4 days a week for several months and saw him go down hill after the flu last year. She was able to talk to our cardiologist and neurologist and let them know this is not an anxiety problem. My son would give 110% until he could do no more. My own personal opinion for what it's worth is that more than likely there is an underlying cause for POTS rather you have high or low blood pressure or a crazy heart rate. Keep pushing for answers and keep posting.