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looneymom

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About looneymom

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    Advanced Member

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    http://www.survivingpots.com

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  • Gender
    Female
  • Interests
    I love to cook and read mystery books. I also play the piano and stay active with my church as much as possible. Without faith in God, I know this medical journey with my son would have been impossible. He has provided the comfort and strength needed.

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  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.
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