looneymom

Hi and welcome to the forum. I do not know this doctor but he sounds like he might know something about POTS. These doctors are hard to find and it's handy if you live near one. Wishing you the best and hope you get the answers you need.

My son takes 30 mg 3x daily with 1-3 grams of salt a day. Before this dosage, he was on 40mgs. His dosage will last about 4-5 hours before his blood pressure will start to sky dive downward. However there are times that I have to go ahead and give him a gram of salt before he is due for his next dosage. Our doctor wants us to space the dosage out to every 5 hours if possible. I can usually do this if I give a gram of salt inbetween the dosages. This is an unsual high dosage for a teenage boy. However, with the autoimmune antibodies that have be found in his body, our main goal is to get these things out. Autoimmune antibodies can cross over into the brain barrier and can cause problems anywhere in the body.

That's basically the only reason why my son is taking the midodrine. My son has the mottled legs just from sitting up in his wheel chair. Be sure to give us an update on that symptom from your doctors. With all the testing they are doing it should be interesting what shows up. BTW, are they checking for Lyme? Just wondered if that illness was something that occured where you live.

Here is the link and you can also read a copy of the transcript. It's the second one under the third panel. http://www.help.senate.gov/hearings/hearing/?id=53342b1c-5056-9502-5d05-aa0c57233aed

Katie and gjenson Were you able to get to the article that I could not post? I did not think about this until this morning but that article probably is a public record. When I get the chance later today I will see if I can find it and try and post it. Or some else can if they want to do that search.I really hope there is enough here to help you get started towards a better treatment plan.

Hi Katie, I found an article online but I cannot copy and paste because it is put into a word document. I don't know how to post it as a full document. It is entitled "Field hearing of the Senate Committee on Health, Education. Labor, and Pensions addressing Lyme and tick-borne illnesses, Chaired By Senator Richard Blumenthal (D-CT), Thursday, August 30th 2012, UConn-Stamford, Connecticut. This article was written by Amiram Katz MD. This doctor gives a full explanation of how this disease affects the human body and that IVIG should be considered as a treatment over steriods. Good resources are given in this article and at the end of it. I'm sure other people would like to see this if someone else can figure out how to post it on the forum. Here are some other articles that indicate Lyme could be an autoimmune disease. http://onlinelibrary.wiley.com/doi/10.1111/j.1469-0691.2004.00895.x/pdf http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2897967/ http://www.medpagetoday.com/Rheumatology/Arthritis/36694 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2665673/

Katie, it does sound like you have several doctors that will work with you. Would any of them check for an autoimmune antibody that could be associated with any of your diagnosises? If they are close minded to this suggestion then maybe you could prove it through research. Will your doctor's think out of the box?

Hope you are feeling better today. I have heard this treatment can help the POTS patient.

Hi Raisin, I did not not what this was but here is a pretty good article to read about the M protein. Maybe this will help. I would let your new neurologist know this test has been ran , http://www.wardelab.com/10-1.html

Glad to hear that the midodrine is helping. More testing today or do you get a break since it's the weekend?

Wow! At least you have their attention with your dizzy spells. Keep us posted. Hopefully they will find the cause.

Katie When is the last time you had a full immunologiy work up? Sometimes this stuff will show up in this testing with the adult cases. Are you still taking medication for the Lyme? Has your immunologist ever checked you for the CD 57 marker? Google this and you should find article that explains what this marker is used to determine. Tyler has not had this done but I have always wondered what would show up. Edit: I found the article. Maybe this would be of some use. http://www.researchednutritionals.com/information.cfm?ID=200

They may not have too much experience with Dysautonomia as being the only illness in a patient. The symptoms of Dysautonomia can be symptoms of other autoimmune illnesses. I know you probably did not want to deal with anything else on top of dysautonomia but maybe it will go away if they figure out what might be the underlying cause. How many more days are they planning on keeping you?

Goschi Sounds like they are on the autoimmune track or looking for something gentic. Chorea can be connected to several conditions. Hang in there, it sounds like these doctors want to help find the underlying cause of your POTS. Keep us posted on your results. Ctat How are you doing with the midodrine? Did the doctor up your dosage?

Katie Is the scarlet fever documented in your medical records? This is most likely your connection. I would think you would be able to try other immune suppressing drugs. Through research I have learned that the damage to the heart with Rhumatic Fever/scarlet fever does not always happen at the time of the infection. It can happen several years later. It sounds like you have found the immune connection.

You're welcome. It's a little overwhelming seeing all of this but hopefully it will help someone. You guys have been so great to provide support. My heart goes out to all of you that are suffering and just cannot get the treatment that you need. The only advice is to go to your doctor when you are at your worst. From this mom's experience that's easier said than done. There were several appointments that Tyler begged for me to cancel because he felt so bad.

Salt and water is helpful but sometimes medications are needed.

I found a resource that gives a good overview of old and new autoimmune antibodies. Autoimmune Encephilities is becoming a term that seems to be more accepted by the medical community. If you have had any testing for autoimmune antibodies and wondered what symptoms you would be experiencing this resource is loaded with studies and research. From my own research, I have realized that some of Tyler's autoimmune antibodies can be found in other autoimmune disorders. So this is most likely why Tyler does not fit into the PANDAS catagory. Tyler has had many different types of infections and virus that have just kept knocking his body down. The term encephalites has always bothered me because I always thought of this as something life threatening. However, if these autoimmune antibodies are not eventally taken care of, then it could become life threatening. When these autoimmune antibodies cross the brain barrier, then it causes problems in different systems of the body. http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx

Hi Katie, Tyler still has his t's and a's. He never had them removed. When I looked up strep a long time ago it can cause ear infections and sinsus infections. When Tyer was younger he had several and was always treated with antibiotics. Could you be a strep carrier? Have you been checked or could someone else in the home be a carrier. Dogs can even carry strep. A virus can cause a sore throat. Tyler did not respond to antibiotics the last time he tested positive on a rapid strep test. I did take him back in for a culture but he had already taken 2 of the antibiotic pills. The culture was negative. The doctor swore up and down it was strep because of the white spots. Tyler also spiked a low grade fever. However, when I usually put Tyler on antibiotics his blood pressures will stay up better. This last time, his blood pressures would not stay up. I was having to salt load all day long with him for several days. He went from taking 3 gms to 8 gms. A virus for him is just as bad as an infection. It messes his system up and will last 10 days or longer.

Katie, you are right. Unless it will show up positive in a test, a doctor will not go down this road with you. Your doctor must be willing to run these test when you are at a very sick point and your symptoms are really flaring. These autoimmune antibodies can be at very high levels when this is happening in the body. Which makes sense about autoimmune to me. I will explain my wierd reasoning and maybe this will make sense to someone else. When my son had his first Cunningham Panel, the testing could not be ruled out as negative or positive for PANDAS/PANS but when he got sick with an infection everything went way out of range on the second test.. So in my head, I'm thinking his body has already accepted these autoimmune antibodies and won't fight them off and when he gets another infection, his cells are not calling out the troops to fight the infection because his cells have accepted these autoimmune antibodies created by infection as a normal thing. If you can get to an immunologist when you happen to be sick, this is also helpful. Tyler's just happen to be fighting off a sore throat and his white blood count was up when all his immune testing was ran. I was just at the right doctor at the right time with Tyler. The immunologist caught this happening in his blood work and pointed this out to me. I know it's hard to push yourself to go to the doctor when you are at your worst but sometimes this is the only way to get answers. These autoimmune antibodies can be hard to find if your body has already accept them but in a really bad flare, this might be the perfect time to test if you can convience the doctor.

Here is a blog that has been written by a natural path doctor on sleep and some other supplements. http://www.vitalityandwellness.com.au/health-blog/low-gaba-levels-increase-gaba-naturally

My son takes Midodrine 3 times a day at a very high dosage . He has low blood pressure and it wears off after 4-5 hours. He did start at the lowest dosage (2.5 3 times a day)but his dosage had to be raised up. Usually you can tell a difference within the first week. I would encourage you to call your doctor if you are noticing improvement. There are side effects to this medication and Tyler has had a trial period of being off this medication for 6 weeks to see if it was causing some of his strange symptoms. His symptoms remained and his blood pressures kept dropping lower. Once he started back on this medication, his blood pressures started staying up again. Midodrine, salt, and fluids are the only things that help kept his blood pressures up. Because of his high dosage of midodrine, I give it every 5 hours, but sometimes his blood pressure will drop and I have to give him a gram of salt. I still moniter his blood pressures about every 2 hours. I email these to our cardiologist weekly.

Hi Darline, I found an article on the ANA and DNA. My son tested negative about 3 years ago for ANA but probably needs to be rechecked. I found this article interesting because it stated that Lupus may not show up for several years after a positive ANA. Just wanted to encourage you to stay strong and keep looking for answers. Here are a couple article. Hope they help. http://rheumatology.oxfordjournals.org/content/39/6/581.full http://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

Hi Katie, Is the doctor using a rapid strep or step culture test? My son started testing positive on the rapid strep test this last year. Which threw us for a loop because he never would test positive on a rapid strep for several years. Our doctor now wants a culture test done when ever rapid shows up positive.

My son does not like storms either. When I know they are coming, I try to pull a few tricks out of my bag. Sometimes they work and sometimes not. If the power goes out, it can mess some of these activities up. Tyler likes homemade sugar and chocolate chip cookies fresh from the oven. So I bake and Tyler will help mix up the cookie dough. The mixing part is physical therapy for him. He has to use a spoon. Sometimes we play his favorite board game like monopoly or Dad will challenge him to a game on the X-box. These activities help keep his mind off the weather sometimes. The other thing I do is turn off the TV off so we don't have to constantly see the weather warnings or or storm paths. My cell phone has been programed like a weather radio to get the warnings from the national weather service. The app is free and the cell phone stays with me. I also get a free text from my local weather channnel.