Rachel Posted September 11, 2014 Report Share Posted September 11, 2014 I found a couple of articles that might be of some interest to someone. Most of you know my son was dignosied with Postural Orthostatic Tachycradia Syndrome and his symptoms keep getting more severe after infections and viruses. Currently my son is doing plasmapharisis twice a week on an out patient basis. The treatment is not causing him to be worse or increasing any of his symptoms. I am beginning to see small changes. He is gaining some strength and he is able to do some physical therapy exercises. His tremors are less. Our doctor started him on some predisone this last week. His blood pressures have also improved. Our doctor has told us this could still be a very long haul for full recovery. Research does seem to be catching up to us. My son's last testing numbers on Cam Kinese was 243. The normal range for his age is 95 or below. http://circres.ahajournals.org/content/110/12/1661.full http://www.bioline.org.br/request?pe14052 Link to comment Share on other sites More sharing options...
kim Posted September 12, 2014 Report Share Posted September 12, 2014 rachel, Glad to hear that your son is improving and so sorry for what it sounds like your family has been through. I saw the headline for your post and remembered a thread here a long time ago. I couldn't find it but I remember being intrigued by the possibility of garlic, cabbage and turnips which contain S-methyl-L-cysteine, being helpful. I did find this http://www.jneurosci.org/content/27/47/12808.full The articles on the net at the time were easier to wade through. Link to comment Share on other sites More sharing options...
Rachel Posted September 12, 2014 Author Report Share Posted September 12, 2014 Thanks for sending this Kim. High Cam Kinese can also cause allodynia (severe scalp pain). I saw a study on it this afternoon. High antioxident levels can help reverese this. I will show this article to our doctor. I never realized how much damage Cam Kinese could do. Link to comment Share on other sites More sharing options...
kim Posted September 12, 2014 Report Share Posted September 12, 2014 (edited) rachel here is the article that lead me to the research posted above. http://news-releases.uiowa.edu/2008/may/050108heartdisease.html 9th paragraph Can I ask if your son's illness started in direct relationship to strep? I don't know the history other than what you stated here. I Just bumped up a thread regarding N Acetyl Glucosamine. If it's something that you suspect is involved, I sure would like to hear a Dr.s opinion. The strep antibody connection and this reseach has always had me wondering. Edited September 12, 2014 by kim Link to comment Share on other sites More sharing options...
Rachel Posted September 12, 2014 Author Report Share Posted September 12, 2014 Thanks kim for the article. I have emailed it and the other one to our doctor. My son connection to his illness is strep and mycoplasma p bacteria. He was having strep infections but testing was not identifying them. I found this out last year when he had the strep test that identified past infections. The major illness that sent him down walking pnenoumia and the mycoplasma titer showed up high. It's been a real mess because he had this happen again in 2013 and no one realized it had happened again until the the antibodies test showed up high again. If you find any more articles keep them coming. Again, thanks for the information. Link to comment Share on other sites More sharing options...
rowingmom Posted September 12, 2014 Report Share Posted September 12, 2014 I just came across this article on the use of the ubiquinol vs the ubiquinone version of CoQ10 on heart failure. http://www.lef.org/magazine/mag2008/feb2008_Conventional-CoQ10-Fails-Severe-Heart-Disease-Patients_01.htm Link to comment Share on other sites More sharing options...
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