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looneymom

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Everything posted by looneymom

  1. So happy to hear of your improvements but sorry the last medication did not seem to help. I have a friend that is using IVIG and Rituxan combination. She has been on this combination for awhile. However, she also does a plasma exchange treatment every 3 months to keep lowering the autoimmune antibodies. Eventually, the goal is to stop doing the plasma exchange. Don't know if this combination would be a possibility for you but thought I should mention it.
  2. My son has tried this program. He can do the weight program but the exercise part is still above his ability levels right now.
  3. I ordered the the 23 and me testing for my son when it was on sale for $99. They do that special around Christmas time. However, you can get the testing done free if you have a diagnosis of Depression. They are conducting a study right now and needing participants. You must be 18 years or older to participate. You will probably find the study on their website. I'll see if I can find the link and post it. After you submit your spit sample for the testing, it takes 6-8 weeks to get results back. You will need to keep your data in a safe place and then you can upload it to other websites such as Genetic Geni, or Dr. Amy Yasko website. These are free sites to upload and will give you basic information about your results. There are some other sites such as Livewillo, Nutrahacker, Promethesis that want to charge but provide even more information. I did much research on my own through Dr. Amy Yasko website because of all the free material available. I learned more from her website than anywhere else. Another test that might be helpful to you is called Genesight. MAYO developed this test and it checks to see if your medications will absorb properly according to your genetic DNA code. My son's doctor has recommended that we have this testing done for him if our insurance will pay on it. The 23 and me testing provides a lot of information but you will need to do research if you cannot find a doctor to help you interpret the results. My son's doctor help some and I did much research to figure out much of the test. I enjoy researching. You might also check and see if the University of Michigan is doing their study on Genes for Good. If the study is still open, this test is similar to the 23 and me testing. My husband and I participated in the study and got our results. We ran our results through the websites above and got just as much information that's on the 23 and Me testing. This testing is free if the study is still open.
  4. I have heard really good things about Dr. Goodman at the MAYO Clinic in Arizona. He only sees adults but will see very complex teen cases. I just had a friend report back on her visit. She had to fly out and see him. She was there for a week because of all the testing done. Hope you find answers soon. Your case does sound complex and you really need a doctor to help get you on the right treatment plan.
  5. Hi Samantha91 My son had many of those sym[ptoms in the beginning of his POTS journey. I'll make a few suggestions. Exercise on the floor only and then do sitting exercises in the chair. My son did a lot of floor exercises and then eventually moved on to a recumbent bike. My son had very weak core muscles because he could not stand or walk for several years. He had POTS with autoimmune antibodies. Get your B vitamins checked. They help with energy and chronic fatigue. My son still has fatigue problems from exercise and from doing school work. H eis a Junior and does online school but has classes in Chemistry, Algebra !!, History, and American Lit which all required alot of reading and staying focused on the lesson. He gets just as tired from that as exercise. He has to pace out his day and take breaks. My son cannot tolerate heat either. He just avoids being outside during the heat of the day. He can tolerate up to about 70 degrees. For muscle pain and headache, I would suggest neurotransmitter testing. Unbalance neurotransmitters can cause many symptoms that you describe. My son had major problems in this area. A neurologist or functional medical doctor can run this type of testing. However, this testing can be ordered online. My son has had the testing because some of the doctors he has seen in the past had the kit in their office. It can be a spit or urine test. The results will be sent to you and they recommend supplements to correct the problem. My son takes many supplements but I would rather see him taking supplements then the medications. He is extremely sensitive to neuropsychological meds and the side effects can be horrible. As for ibs, look up Low Dose Naltrexone. This medication has been used to treat this condition and others. My son takes it for chronic pain and it also took care of his daily persistent headache. He also drinks 2-3 liters of fluids every day and takes 15 thermotabs throughout the day,
  6. It's been awhile since I have given an update on my son. He is still on POTS medications and supplements. However, he is swimming twice a week and lifting weights twice a week. So far, he has not had any relapses with the autoimmune antibodies. He had blood work several months ago and the strep was totally out of his body. He does get dizzy if he stands up to quick and his body does not tolerate heat. He has been able to stand and walk since November 2015. He had an upper respiratory virus in February and had to rest for 3 days. However, he was able to get right back up and continue where he left off with exercise. He never had any unusual symptoms return. His blood pressures are within normal ranges but he still takes a hefty dose of midodrine. We did learn that he had a pretty severe problem with absorbing folate. Our insurance stopped paying on his high dosage of Deplin (methylfolate) last year, he went without the high dosage for several weeks. His doctor and I assumed he would be ok on a lower dosage. Boy, were we wrong! He started suffering from suicidal and severe OCD problems. Finally found a high dose supplement of methylfolate and got these problems stopped. I also had to add a few other supplements to keep his body making serotonin. His 23 nd Me testing was positive on the genes that would cause these problems. It took several months to get these problems corrected. My son recovered from these neurotransmitters imbalances and continues to make progress. I will never underestimate the validity of 23 and me testing.
  7. I was looking at your symptoms. Have you been checked for deficiencies in B vitamins such as B-12 or folate? Methylation problems can cause energy, insomnia, and severe brain fog issues. You might consider doing the 23 and Me testing but first find a doctor to help interpret the results. Dr. Amy Yasko has written a book called Autism Pathways to healing. You can read this book free on her website. She uses a test similar to the 23 and me testing. She has a website that will accept the 23 and me test results and it will give you a free report on what supplements could support your methylation system.
  8. My son takes Zoloft and is able to exercise. However, SSRI can be more trouble than worth because of side effects. You might want to have a neurotransmitter testing done to see what's out of balance before trying a SSRI. This testing can be ordered online and it comes with a report of what supplements can correct the problem. Some neurologist and functional medical doctors will also order these test. My son had this testing first before going on the Zoloft. Zoloft just helps his body recycle the serotonin. My son actually needed supplements that would help his body make serotonin such as L-Tryophen, TMG, SaMe, B vitamins, methyl folate, B-12. All of these supplements help with energy levels too. You might want your doctor to check for deficiencies.
  9. I am so sorry. Hope things turn around soon for you. Come to Oklahoma and see Tyler's doctor. He treats adult patients now.
  10. My suggestion is to find an EDS specialist for your daughter. I know of only one specialist, Dr. Tinkle from a friend. Her daughter is diagnosed with EDS. There can be other underlying conditions with this diagnosis. So until you know what you may be up against, please get her checked by a specialist first.
  11. I am also a stay at home mom because my son had a severe case of POTS. He was diagnosed when he was 11. Welcome to the forum and hope you are to find answers for yourself and son. POTS is a rollercoaster ride. Never a dull moment with this illness.
  12. Zoloft and Deplin were very helpful for my son.
  13. It's been awhile since I posted on my son. He caught a nasty upper respiratory virus with the cough and sore throat. He tested negative for flu. He is still standing and walking a week later! He is doing floor exercises to maintain core muscles and has been using the floor peddler.He has not done any aerobic exercises in a week. His doctor said to try some this next week if possible and see if he can start with where he left off. If he can do this, it will be amazing. This is the first time he has been sick since he finished his plasma exchange treatment in July 2015. His doctor and I really did not know what to expect if he got sick but so far so good. His POTS symptoms have been very manageable. My son still takes 20 mg of midodrine 3 times a day and 6-7 grams of salt. His doctor is planning on lowering down his dosage of midodrine after he gets through the flu and strep season. His pain issues have not come back and he still takes the Low Dose Naltrexone and Extended Release Namenda. Before he had treatment with plasma exchange, his symptoms would get worse and would be worse off than he was before he got sick. Plasma exchange has made a huge difference for him. Is anyone's doctor treating their POTS with IVIG or Plasma Exchange yet? Just wondering because I have heard about a doctor in MD that using plasma exchange with kids and seeing good results. If you get the chance to try either one of these treatments for POTS, go for it if your insurance approves it. There are possible side effects with either one but it's worth a trial effort.
  14. My son takes .2 extended release clonidine but also take some supplements that help him relax before bedtime. I have tried to wean him off of the clonidine but it also relieves other symptoms such as night sweats and adrenal release. However, I have been able to drop his dosage from .3 to .2 and his doctor is pleased. Other supplements that help with relaxation are GABA (ammino acid), B6, Magnesium glycinate, and L-Tryptophan which is also an amino acid. My son no longer takes the last supplement because it really decreased his appetite. However, my oldest non-pots son does take it a night and has no problems at all with it. L-Tryptophan affects everyone differently. Just be sure to use quality supplements. All of these supplements, I order online from the NOW company. If you want to stay away from a prescription, you might want to try some of these supplements
  15. Hope this new form of IVIG helps you. If not, maybe you will need to consider plasma exchange to get some of the antibodies out and then be able to go back to IVIG. Wishing you the best. My son was not able to do IVIG. It caused many problems and he had to do several plasma exchange treatments.
  16. My son had a daily persistent headache for about 5 years. He tried all the medications and most made it worse. However, with his headache he had severe scalp pain, could not tolerate to wash hair, scalp stimulation would cause vocal tics to start in the shower, and hypersensitive skin issues. His POTS had an underlying autoimmune cause but with Dr. Kem's new research, It sounds like that POTS can just be autoimmune itself. The only medication that helped him and ended all of his pain was Low Dose Naltrexone. If you think your headache could be related to something autoimmune, this medication may help your condition and headache. This medication is also used for autoimmune diseases and Chronic Regional Pain Syndrome (CRPS). My son's cardiologist and I both suspect he had CRPS but don't have a doctor in the state to diagnose it. My son started on this medication in July 2015 and 8 weeks later all pain issues and daily headache is gone. BTW, when he does get a headache, it responds to Tylenol within a couple of hours. This medication does not work instantly and you cannot be taking opiates.
  17. My son has POTS and most likely has CRPS. A medication that has helped him with chronic pain is Low Dose Naltrexone and it is used to treat CRPS. There is a lot of information online about the medication and some great facebook groups that can give you plenty of information. My son started taking LDN in July 2015 and it took 8 weeks before it started working. It does not work instantly and you cannot be taking any opiates. I also use this medication for chronic pain associated with an autoimmune illness. It started working for me a month later. My son and I are both pain free and most likely will not stop taking this medication. It does help regulate the immune system and helps with other autoimmune diseases.
  18. My son has been on it since July 2015 and I have been on it since October 2015. LDN has been the best medication and took away all of our chronic aches and pains. It is helpful with many autoimmune conditions. Don't be afraid to give it a trial run. It's a cheap prescription, if you order from the right pharmacy.
  19. My son has done online school since 6th grade. He does K12 online. It's free and they send all the materials needed. You just need a computer and internet. It was the best decision we ever made. His POTS was severe and he had an underlying condition. I am a teacher myself and had to quit my job to stay home with him. My son needed around the clock care and we also had to fit in physical therapy 3-4 times a week. With online school, he could do his school work anytime he felt like it and it he was having really bad days, he could back off. He also had an IEP and a team of teachers that had medical reports from his doctor to explain his medical condition.If we had a problem, I could always get ahold of his lead teacher and get more accommodations if needed. Please feel free to pm if you have more questions.
  20. Hi Sue My son and I have both been on 3 mg of LDN for almost a year. My son had no troubles with sleep but I did. It only lasted a week and then I started sleeping through the night. It does work with the immune system and helps with autoimmune diseases. It has not made POTS symptoms worse for him. After being on it for 8 weeks, my son had no more chronic pain issues, no severe scalp pain or daily headache. He has been pain-free for a year. I started taking this medication last October for pain. I learned that I had a high ANA and high inflammation markers. Recently I found out that I have ortho arthritis and this is most likely why I was in so much pain. BTW my son takes Extended Release Clonidine for sleep. The LDN was no help with sleep issues for him but for me it was a different story. I sleep like a baby. LDN is a medication that I think we will both always need.
  21. Yogini So far his heart rate has been ok. I am in the pool with him and watch him pretty closely. We have learned that he cannot do high heart rate exercise or he will be so tired the next day that he cannot function. I have come to the conclusion that the amount or type of exercise needed in order for a person to function with POTS is different for everyone. You have to find your sweet spot with exercise.
  22. My son's PT and I have read lots of information about exercise and heart rates. However, my son cannot tolerate doing exercise at a continuous heart rate for a specific amount of time. The fatigue issues are horrible the next day and it's hard to school work when you are exhausted. We both came to the conclusion that this must be an individual thing because my son is not able to tolerate a high heart rate increase for a specific amount of minutes. I think I need to read the book on Primal Endurance. This sounds like the path my son and I are both on. We both go to the gym to swim 3 times a week and lift weights. We stay in the pool for 30 minutes and swim a certain distance. It's not a race, just to increase endurance. We swim awhile, take a rest and swim some more. Thanks for the information shan1212.
  23. My son was diagnosed with daily persistent headaches that were 24/7. This pain issue was horrible for him and his doctor tried him on several medications. However, my son had severe scalp pain that was part of the headache pain. This type of pain is known as allodynia and can be part of chronic regional pain syndrome. My son got some headache pain relief from Extended Release Namenda but the rest of his pain and headache was totally gone after being put on Low dose Naltrexone.It took 8 weeks for all pain to be gone. Low Dose Naltrexone helps with chronic pain and chronic regional pain syndrome . Both of these medications can be prescribed by a neurologist. My son has low blood pressures but POTS can be associated with high or low blood pressures. A tilt table test could provide a definitive diagnosis of POTS. Don't give up, it's hard to find a doctor that understands POTS and the symptoms that come along for the ride.
  24. Tyler is swimming 3 times a week and lifting weights twice a week. He stills goes to pt once a week to work on core muscle strengthening. For those that don't know, Tyler was diagnosed with POTS in 2011 but tested positive for basal ganglia autoimmune antibodies in November 2013. These antibodies interfere with cell signaling and he was not able to stand or walk for almost 3 years. He had to go through a year of plasma exchange treatment to get the antibodies out of his system. He stopped treatment in July of 2015 and was able to peddle a stationary bike without tremors in June 2015. In November 2015, he was finally able to stand up by himself and took his first steps. His progress has been slow and steady. He is only able to walk about 13 minutes on land but in the pool it's a different sight. I just want encourage everyone to do what ever exercise you can. I have a differnt opinon about exercise and getting the heart rate up.When Tyler started doing exercise, he could only peddle the stationary bike for one minute and do a few floor exercises. He could only exercise 3 days a week. This summer he is doing 4 days a week but will go down to 3 days of exercise when school starts. School increases the stress levels. Tyler does not tolerate exercise that increases the heart rate. Fatigue issues are horrible the next day for him. He is in the pool for 30 minutes and does arm and leg weights on seperate days. Listen to your body and be patient. Exercise can help but if an underlying cause is involved with your POTS, it needs to be treated. Wishing everyone the best with their exercise program. It's hard work, No matter how much you do.
  25. My son has done the 23 and Me testing. He is homozygous for this gene snp and does need methylfolate and Methyl B-12 viatamins and doners. Dr. Amy Yasko has a free data base that you can enter your 23 and me test results. The report is free. My son's report was 64 pages long and it included what supplements that he should be taking.
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