ramakentesh Posted January 7, 2012 Report Share Posted January 7, 2012 If you had Ankylosing Spondylitis and POTS what would you think of these studies:http://www.ncbi.nlm.nih.gov/pubmed/20204669 Quote Link to comment Share on other sites More sharing options...
issie Posted January 7, 2012 Report Share Posted January 7, 2012 I'd say that inflammation may be the key. I posed that question over a year ago because my body is one big oweeee. When I use anti-inflamatory type things - I seem to feel better. See if you can work on the inflammation and see what happens. Try antioxidant type things - like Vit. C and Vit E - ginger, turmeric, olive leaf. Grape seed oil/extract helps too and also helps vein function. I think this is a part of the puzzle that should be addressed more. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 7, 2012 Report Share Posted January 7, 2012 TNF inhibitors seem to have dodgy side effects. I think controlling excessive sympathetic activity is the key to reducing the inflammatory response. There is well documented evidence on the roll of stress/symp activity on the inflammatory/immune response. This is why ive chosen to start LDN. LDN calms the symp nervous system activity. Ive noticed on some of your other posts that you sometimes feel agitated/ anxious. Is this correct? Do you think that means you might have excess symp activity? Do your symptoms get worse with stress? Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 7, 2012 Report Share Posted January 7, 2012 TNF inhibitors seem to have dodgy side effects. I think controlling excessive sympathetic activity is the key to reducing the inflammatory response. There is well documented evidence on the roll of stress/symp activity on the inflammatory/immune response. This is why ive chosen to start LDN. LDN calms the symp nervous system activity. Ive noticed on some of your other posts that you sometimes feel agitated/ anxious. Is this correct? Do you think that means you might have excess symp activity? Do your symptoms get worse with stress?LDN for me in the beginning up that activity for a couple weeks until I got used to it. I felt anxious and giddy on it, but it eventually evened itself out Quote Link to comment Share on other sites More sharing options...
issie Posted January 7, 2012 Report Share Posted January 7, 2012 I asked the allergy/immunologist about prescribing the LDN because it's supposed to help regulate the autoimmune issues. It could potentially cause more pain - although that's not what people say it's done to them. I have lots of pain issues and know there is an autoimmune component with me. He wouldn't give it to me to try - said there are not any scietific studies out on it. I do have the over sympathtic responses. I'm also looking at a natural supplement that is supposed to do the same thing. I've been reading about it in Life Extension magazine. I need to get more details on it before I post about it.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 7, 2012 Author Report Share Posted January 7, 2012 I actually have LDN from two different docs sitting in my medicine cupboard. I was planning on trying it when my long service leave kicks in in six months (ive just got to make it that far LOL).Im gonna read the large thread on pheonix rising tonight later on and see what I think about LDN.Im sure it would help AS dont get me wrong, but AS is like my get out of POTS card. As an example - today and last night I was SUPER potsie. Feeling terrible and then out of the blue I started to improve at 3.30. Within ten minutes my sacroiliac joints were both totally inflammed and the pain was excruciating (my first AS symptoms since August)! Wait until i tell my POTS specialist that story. They never believe that kind of stuff but it is 100%! POTS severe = no AS and generally AS severe = much less POTS. SO im saying to my body - kill my back for a while! Let me stand for five minutes!its quite unfair - all my docs give me endless pity about Ank Spond and I tell them over and over that its nothing compared to POTS (which most assume is just a mild thing).As for anxiety - well that only happens sometimes when my POTS is very bad. It didnt happen this time thank god because when that kicks in its truly hellish. My doc says that its because of the sudden change in blood flow causing my body to shoot of adrenaline to counteract it. Its postural but can kick in with surges as well.Also since I got sick with AS and POTS my ability to tolerate caffeine has greatly decreased. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted January 7, 2012 Report Share Posted January 7, 2012 I dont have AS, but I did post a thread about feeling better when i am sick... to top it off my family has a long history of autoimmune disorders, so I am sure I must have one lingering in me. LDN doesnt work overnight though. I know a lot of people get their hopes up for a quick fix, but for my mom, it took a couple months to really see improvement. It REALLY helped with her inflamation.I have been in a complete POTS mess since I was 6 months PP (so around 2 years now). I am either really great or terrible. I dont really have an inbetween like some people on here. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 7, 2012 Author Report Share Posted January 7, 2012 yeah lots say they are like that - very fluctuating. For me i fluctuate between terrible and slightly ok, terrible then randomly great, then I start to improve unil most days im ok, with fortnightly crash days. Quote Link to comment Share on other sites More sharing options...
juliegee Posted January 7, 2012 Report Share Posted January 7, 2012 Interesting. So many of us get the "endothelial inflammation" DX via different channels. For me, it was from my rheumy based on a bad echo (diastolic dysfunction) and severe reynaud's. I have endless problems with my SI joints too- they pop out frequently. And, same with me re. caffeine. When my symptoms flare- forget about it.Definitely something there, obviously connected to your POTS. maybe search endothelial inflammation here. I know there's been lots posted about it. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 8, 2012 Report Share Posted January 8, 2012 Rama, perhaps if you got a giant tape worm your immune system would get distracted from AS and POTS. LOL. I know they have used intestinal worms to suppress serious bowel autoimmune diseases. Does anyone know if theyve ever tried to use them to suppress non bowel autoimmune diseases? I guess theoretically if your immune system is struggling then maybe worms would tip us in the direction of getting worse, not bettter. Who knows. Ive been looking at the worm eggs you can buy on the internet and thought, nahhhhhh, too risky. The last thing we all need is dys plus an itchy butt! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted January 8, 2012 Author Report Share Posted January 8, 2012 ive thought about it! i contacted the people that do it and all - its very expensive. Quote Link to comment Share on other sites More sharing options...
issie Posted January 8, 2012 Report Share Posted January 8, 2012 I know some do this, but seems like it would cause malabsorption and we need all the support we can get with our sick systems. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted January 8, 2012 Report Share Posted January 8, 2012 Thats a good point issie. Quote Link to comment Share on other sites More sharing options...
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