looneymom

I am assuming this is a blood test. Tyler's B vitamin levels were checked last year. I was told even though his levels are high, the body will get rid of what it does not need. B vitamins are water soluble.

However at the time I had his testing done, he was not using the active form of B6 which is P5P. My son has had the 23 and me testing done and needs Methyl B-12 with the right b vitamin doners. My son's body will absorb the regular B6 but his body most likely was not able to use it according to test results and othe research. As I read more on this, the regular B-6 is not a methyl b doner vitamin. For that reason, I switched him as soon as I could find the active form of B6. He just started this form a couple of weeks ago. It's hard to tell about any improvement because the symptoms the neuro-antibodies have been causing in his body. The goal is to get his methylation system to function as well as it can while trying to get the neuro- antibodies out of his system.

Your B vitamins are very important. Checking homocystine levels is also a good thing to do. This test was done when Tyler had his B vitamins checked. High homocystine levels can indicate a problem that your body is having trouble absoring certain B vitamins. Tyler's was in range but his B- levels were high. His blood test was done as a fasting.

My son also takes the active form of methylfolate. This was one of the first supplements our cardioloist put him on to help with energy, and fatigue levels. It also helped with brain fog. The 23 and Me test was helpful because it helped us figure out what form of B-vitamins that Tyler's body needs. This test does provide a lot of informatiom and has been helpful in other ways.

I agree, keep calling until you get some answers. It's frustrating, I think it's great that your doctor is doing an MRI. He must think that he is not getting the whole picture of your situation. With the problems you are having, they need to be running test. It does get expensive and time consuming. However, the goal is to get you back to a normal functioning lifestyle. Never lose sight of this goal.

When you really started getting bad, Did you by any chance have some type of virus or flu? The reason I ask is because I have wondered about something that happened to my own son. His tremors really started after a virus and I was wondering if this symptom occured after you had been sick with a virus.

If you had a virus before this happened, you might want to check out Guillain Barre Syndrome. The respiratory muscles are affected and so is the ans. There are 6 different subtypes and it's a clinic diagnosis. I usually don't go to Wikipedia to do research but I learned about the subtypes there. This does sound like it has something to do with your heart and lungs. So I would like to encourage you to hang in there with your doctors. Whatever this is, It may be the underlying cause of your POTS. Keep your chin up and stay strong.

Interesting. If it is for baseline only, then you may be coming back for more future appointments.

You might want to check out the active form of B6 which is P5P. I learned about this vitamin while trying to get Tyler's methalation cycle working better. This supplement will raise GABA levels if the body is defienct and will help lower Glutamate levels. I no longer give Tyler the GABA because it's hard to tell with this product if you are actually getting the real thing.

Tyler has also tried a couple of sleep prescriptions. He has been tried on Lunesta and Ambiem. These did not help either. He has tried some herbal supplements but they seem to affect blood pressure levels and make things worse. For some reason, Tyler's body does not handle the herbal supplements very well. Our doctor has recommeded that we stay away from them since they seem to lower blood pressure too much.

Potluck

Have you tried B6 the active form P5P. It will help raise GABA levels at night. Our cardiologist would rather see Tyler takes this instead of GABA. With the supplement GABA, it's hard to tell what you are really getting and P5P will raise GABA levels naturally if the body is deficient in this area. Tyler has been getting a deeper sleep since I added this. He still uses the extended release clonidine. It does not affect him at night. He takes this when he is at the hospital for treatment and I'm able to monitor it then. I'm so sorry the clonidine did not help you. The strange thing is that Tyler cannot take this during the day time when he is sitting up. It lowers his blood pressure. The only thing I can figure out about it helping at night is that it must be helping with teenage hormones and adrenal surges. That's my guess.

Juneflower

How is your daughter doing?

This is a 2007 study but I found it interesting. I would have to assume this could happen in female as well. My son has vocal tics and past infections with POTS on top of it all.

http://www.turkpsikiyatri.com/C18S3/en/therapeuticResponse.pdf

Tyler just had his 3rd IVIG treatment but still not seeing any improvement yet. He is still on his high dosage of midodrine. Our doctor thought by now we would be seeing some improvement. I'm monitoring blood pressures every 2 hours since we have been home from the hospital. No improvement with any symptoms. PEX may be our next step. Just remember these PANDAS antibodies can come from other infections besides strep. Rumatic fever and SC also have been found with these antibodies.

Hi Racer,

This sounds like a job for a lawyer but I know that can be expensive too. I would encourage you to find a different team of doctor and try again with the disability. Someone should be able to help you get this done maybe a close friend or family member.

Hi Sarah,

Like you, Tyler had an amazing hospital experience this last time in the hospital. Our cardiologist brought in his intern team about (6 students)with him. Most of the time it's just our cardiologist that pops in but this time it was different. Children's OU is a teaching hospital. Tyler also had the same IVIG nurse again and she has most of the other peds. POTS patients that come in for treatment. I figure this would eventually start happening at this hospital. This nurse has also been training the other nurses on the floor and educating them about POTS.

Hi and welcome to the forum. My son is 14 and also suffers with a daily headache. He has been tried on many different medications and nothing helps. Some medications have made it worse. He was diagnosied with POTS in 2011 but his headache started after walking pneuomina in December 2010.

About 9 months ago my son had the Cunningham Panel ran when he was very ill (double ear infection) and his other POTS symptoms were flaring. This test was positive for these PANDAS antibodies. My son has not been diagnoised with PANDAS however these anti-neuroantibodies are found in other illnesses and can cause neurological problems.

These anti-neuroantibodies are caused by strep, viruses, mycoplasma bacteria, and other infections that did not clear up with antibiotics when the child is sick. Eventually the body begins to accept the antibodies and more damage is done to the body. However, there are other antibodies that have been discovered besides these and can also cause neurological problems. My son kept getting worse after infections and his POTS medications would not keep his blood pressures up.

Headaches can be a symptom of POTS but can also be a symptom of another underlying illness. I feel your pain of trying to find a doctor to deal with the headace problem. A Peds. neurologist would probably be the most helpful if they understand what POTS is. An immunologist can help if infections seem to be a problem. My son has tried some narcotics but these medications make other symptoms worse. An ice pack does seem to help him at night but I have not found a medication to help during the day time. Here is an article that explains these antibodies in more detail.

http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94

Hang in there. Sounds like you have a lot to discuss with your doctor. I'm glad that they were able to get some information. Wish the staff could have seen everything happen that you have described in the past observations.

The flu can last up to 10 days but side affects (fatigue, low energy levels) can linger for a couple more weeks. Take care and rest.

When my son was taking this medication, I had to monitor his blood pressure about every 2 hours for several months to figure out how much salt he needed. My son would alternate water and gatorade throughout the day and salt his meals. If his blood pressure could not stay up, I would have to give him thermotabs. This is a buffered salt tablet. I went to this extreme with my son because he had very low blood pressure in the beginning of his POTS. The amount of salt a person needs is based on the individual and their situation. I was only able to figure this out by monitoring his blood pressure.

Hi Sue,

I did not know this about vitamin D but it makes sense. Tyler's vitamin D had dropped down, and I went back up to the 10,000 mark with him. So glad that you have found a doctor that's willing to explore some other medications and treatments.

Post when you can and good luck with your test. BTW Have you tried to explain what happens to a doctor when you go off the creatin? This should be giving them a clue to what is happening. I can understand why you want to take it when it makes you feel better. Some doctor is surely going to catch on. Hang in there and hope you get the answers you need today.

Hi Rasin

Hang in there and don't get discouraged. I have been going through my son's testing. His IgM was in range. Did they check your IGG subclasses and C4 complement?

C4 checks for disease activity level in systemic lupus, glomerulonephritis, rheumatoid arthritis and autoimmune hemolytic anemia. My son was at 20 and the range is 15-59. My son hurts all the time. I'm going to see if we can get this number rechecked?

I'm sorry you are sick. My son just got over a virus and his blood pressure was low for several days. I had to give him 5-6 grams of salt a day. Before the virus, he was getting 1-3 grams of salt. So a virus, flu, and any type of infections can make POTS symptoms worse. Stay hydrated and rest.

This is positive and very encouraging. Our teaching hospitals are the key to this.

Your test is this week, Right? I wish you the best and hope they catch it all on video.

I came across another article from a lab. I am not promoting this lab and my son did not have any testing from this lab. My son has been diagnosied with POTS and the antibodies that have been found in PANDAS have showed up in his testing also. However, these antibodies have been found in other illnesses. I have come across research articles that support this. I wish now that I had saved them all but I at the time I had no idea that my son had these antibodies. Many of you are searching for underlying causes of your illness. Maybe this will shed some light on the subject. There are references at the bottom of this article that may also be of some help.

http://www.wieslab.se/index.php?headId=73&pageId=73&langId=1&diseaseId=94

You and your doctor are in my prayers. Hope your appoinment goes well and that you find the answers you need to start the healing process.

Could you have virus of some sort? This can send you into flare and so can stress. I always thought that Tyler was having flares in the beginning and I think some of them were that. However, when he had a virus or infection it made POTS much worse. If his routine was off that made POTS symptoms worse. Sometimes it' hard to know what causes a flare. When it comes to exercise, I would suggest setting a time limit. When Tyler was able to exercise and he was having a bad day, he would cut back. For him it did more harm if he did not back off the exercise level.

You are very welcome. I don't know if any studies are being done with adults at this point but I will ask our cardiologist. My son has his next IVIG treatment this coming week and our cardiologist is on call at the hospital. I know I am getting closer to some answers with my son and just can't stand the thought that other people are suffering just like my son.

With all the research going on, I think we are going to see some new testing being accepted by insurance and doctors. I found a couple more intersting articles. RF seems to be difficult to diagnosie and the antibodies that are found can cause a movement disorder called SC. Some people on the forum have mentioned having tremors and shaking. RF is just another avenue you might want to explore for underlying POTS. My son has tremors/shaking and even doing voluntary movements, like trying to do specific exercise, will even make his worse. This first article explained why this might be happening in RF. The next article looks a specific snips (23 and Me testing) (gentic genie or livewello results) that point toward the inflammation markers in RF.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002660/

http://www.annalspc.com/article.asp?issn=0974-2069;year=2011;volume=4;issue=1;spage=13;epage=21;aulast=Guilherme

Just make sure you can get the wheel chair to fit in your vehicle. Measure the doors in your house. Tyler has a wheelchair with powered wheels. The chair breaks down to fit into our jeep. It does not recline but it meets his needs for right now.

Hi and welcome to the forum. Have you tried any prescriptions to help with the brain fog? My son takes Zoloft and this helps him. This medication was prescribed by a neurologist. If you have not been seen by one, they can be helpful in this area if they understand POTS. My son is also recieving IVIG treatment because his POTS is an autoimmune condition.