Annaliese Posted December 3, 2011 Report Share Posted December 3, 2011 I urge people who think they have autoimmune disease to look at the research that's currently being done on low dose naltrexone. In clinical trials they have demonstrated positive effects in treating many autoimmune diseases and also HIV. I have spent a long time researching it and now im going to try to convince my gp to prescribe it. See www.lowdosenaltrexone.org/ldn_trials.htmThere is also a book called up the creek with a paddle- treatment for ms and all other autoimmune diseases. Plus ive found 2 facebook groups which have many people who are currently using the drug. Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 3, 2011 Report Share Posted December 3, 2011 Interesting. Exactly HOW does it work? Can you explain it to us in layman's terms?The fact that it is used for HIV and other autoimmune illnesses is promising as each involve the immune system- either totally deficient or hypervigilant- attacking itself. I'd like to learn more. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 All it does it boost endorphins during the 4 hour peek at night.. which regulates your immune system. I am starting it back up next week! My mom has been taking it forever... however, if your POTS is not autoimmune related, it probably wont help.My moms friend with MS is completely symptom free from taking it. We get it from a compound pharmacy because most doctors wont prescribe it. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 Oh and start LOW. Recommendations are from 3 to 4.0 mL but start at .5 and see how you do. The first week was hard but eventually I did fine with it Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 3, 2011 Report Share Posted December 3, 2011 I have NO idea if my POTS is autoimmune- do you have to test positive for that with blood work? BUT, I do know that my immune system IS compromised. I have hypogammaglobulineamia- meaning I have very low immunoglobulins that regulate my immune system. To date, the only treatment for that condition is IVIG- where immunoglobulins are replaced via infusion. The side effects can be pretty brutal and I've been afraid to try it. Coincidentally, some docs are using IVIG to treat POTS as well. Seems like this LDN could be just as/maybe more effective as it stimulates your body into healing itself as opposed to injecting foreign immunoglobulins into our bodies. Regardless of wether or not POTS is deemed autoimmune- isn't that testing pretty sketchy anyways? It seems that all dysautonomia is caused by an assault to the immune system. Quote Link to comment Share on other sites More sharing options...
songcanary Posted December 3, 2011 Report Share Posted December 3, 2011 I am taking 4.5mg at bedtime for fibromyalgia. It has been a godsend. My doctor said to look for increased energy and decreased pain. That is exactly what happened. But it hasn't made any difference in my dysautonomia, although I have never been dx'd autoimmune. I do get it prescribed by an MD. I started at 4.5 and had no problems at all. I think it likes me LOL. Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 3, 2011 Report Share Posted December 3, 2011 http://www.icdrc.org/presentations/ELDAHR_CS2Talks.pdfHere's a PDF recap of a seminar for physicians on "Improving Immunity & Understanding Inflammation" It dances around so many possible treatments that we regularly discuss here, including LDN, turmeric, minocycline therapy, IVIG, etc. Takes some patience to get through- but really informative. It focuses on a ped population, autism in particular, but still VERY pertinent to us. Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 3, 2011 Report Share Posted December 3, 2011 I read a lot about LDN a few years ago and really hoped it would help my son. I BEGGED a doctor to prescribe it for Dan. He took it for a few weeks and it made all his POTS symptoms so much worse. It took quite a while to get back to his baseline. So it's not for everyone but I think it could be helpful for some. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 I have a lot of friends taking it for CFS and its a 50/50 chance. Some do absolutely WONDERFUL and almost go into remission with their CFS (they still have some POTS symptoms) and other it doesnt do too much. However, it is such a safe drug, especially at those low doses that it wouldnt hurt to try.My mom asked Dr. Goodman and he wont prescribe it He seemed interested, but most dont know exactly how it works and dont want to risk anything. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 I am taking 4.5mg at bedtime for fibromyalgia. It has been a godsend. My doctor said to look for increased energy and decreased pain. That is exactly what happened. But it hasn't made any difference in my dysautonomia, although I have never been dx'd autoimmune. I do get it prescribed by an MD. I started at 4.5 and had no problems at all. I think it likes me LOL.I tried to get to 4.5 but the insomnia was terrible! Did you have that issue? I got to 3.5 and did okay but I was afraid of it coming back. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 Oh sorry what I meant was unless you have an autoimmune issue contributing to your POTS, it wont really help the actual POTS symptoms. It definently helps fibro, crohs, MS, those kinds, but when I took it, I notice an increase in energy and improved mood, but the same POTS symptoms. It also helped my IBS a ton and after the insomnia phase went away, I got an awesome nights sleep! Quote Link to comment Share on other sites More sharing options...
songcanary Posted December 3, 2011 Report Share Posted December 3, 2011 Hi Dani,I actually put off starting it because the last thing I needed was more insomnia! But for some strange reason, that never happened. I am sleeping better while taking it, and did from the very beginning. I must say that was a surprise, and a welcome one. I WISH it would help my IBS, now that would be truly awesome! Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 3, 2011 Report Share Posted December 3, 2011 Hi Dani,I actually put off starting it because the last thing I needed was more insomnia! But for some strange reason, that never happened. I am sleeping better while taking it, and did from the very beginning. I must say that was a surprise, and a welcome one. I WISH it would help my IBS, now that would be truly awesome!That is great! My mom is just like you with it... she slept like a baby the first night. She had a clostomy bag and it kept bursting out every couple hours because her stomach would dump and the first night she took LDN it stopped completely and now they removed it and she just has a j pouch. It really is a miracle drug for some people. I just didnt want people to get there hopes up with dysautonomia because its a hit or miss with it. But im glad you are doing great on it! I hope it starts to help me out again. I had to stop because I had my tonsils removed before, which is the only downside if you are on an opiate :/ Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 3, 2011 Author Report Share Posted December 3, 2011 Mack's mum. If you take a look at the website l mentioned above, it will give you a laymans description. I wouldnt want to write something that's incorrect. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 4, 2011 Author Report Share Posted December 4, 2011 Hi lenna, in what way did it make your son worse? Do you mind me asking what type of pots he has? Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 4, 2011 Author Report Share Posted December 4, 2011 Songcanary and Dani. Im very excited fthat LDN is helping you. Did you find that your BP decreased at all? What about heart rate, any increases there? I heard that your bp might decrease and hr increase on it. Dani, do you mind me asking what sort of POTS you have? Quote Link to comment Share on other sites More sharing options...
anna Posted December 4, 2011 Report Share Posted December 4, 2011 This links to an easy to understand article on LDN:- http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/777 (from a UK, MS research group) Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted December 4, 2011 Report Share Posted December 4, 2011 I think I have low flow POTS but I havent been tested. Definently a lot of low bp issues and high hrs, but mine does not go high on standing.It really didnt effect my POTS in a good or bad way, just gave me more energy because I think I was sleeping better at night. Ill let you know how it goes when I start it up again! Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 4, 2011 Report Share Posted December 4, 2011 Hi Annaliese, You know, it was a couple of years ago and I don't remember specifics. (there have been so many things that Dan has tried, it's sometimes hard to keep it all straight!) I think it just magnified his POTS symptoms. I remember that he started taking it during Christmas school vacation, and I was so hopeful that it would help him improve his school attendance but instead it made everything worse.I don't want to discourage anyone from trying this med!! I wish it had worked for Danny and I hope that it will work for others. But I shared his experience just to let people know that it doesn't work for everyone so keep your expectations realistic until you've given it a shot. Quote Link to comment Share on other sites More sharing options...
songcanary Posted December 4, 2011 Report Share Posted December 4, 2011 Annaliese,I had no change in either BP or heart rate. The day after starting it I awoke with a general feeling of well being (I know that sounds nuts but it really happened) and I am much less stiff in the morning. I can actually bend over and put on my slippers . Quote Link to comment Share on other sites More sharing options...
toddm1960 Posted December 4, 2011 Report Share Posted December 4, 2011 It looks like if you improve on turmeric you may have good luck with LDN, they both reduce the activity of inducible nitric oxide. It might be a good stepping stone, start with turmeric if you feel better move on to LDN. As for me I felt horrible on turmic, two separate times, each time a couple of days after stopping I was back to my normal crappy self.On a different note I do have two relitives with MS, and will pass this information on to them. I wonder if turmeric would lessen MS symptoms? Quote Link to comment Share on other sites More sharing options...
Lenna Posted December 4, 2011 Report Share Posted December 4, 2011 Well, maybe that explains why my son did so poorly with LDN, because we have since learned that he does not have enough nitric oxide. Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 4, 2011 Report Share Posted December 4, 2011 So in Stewart-ease... maybe good for "normal flow" POTS and bad for "low flow." I swear I fluctuate between the two Initially, I DID get great results with turmeric....Thank you, EVERYONE, for all of the great info. I LOVE to hear about new treatment options. Quote Link to comment Share on other sites More sharing options...
Annaliese Posted December 6, 2011 Author Report Share Posted December 6, 2011 How do you take tumeric? Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 6, 2011 Report Share Posted December 6, 2011 I took a GNC brand of turmeric- I think about 1,000 mg a day. I had a VERY noticeable increase in energy (yay!) and a huge cognitive improvement- like cobwebs were falling away. I LOVED it....then I developed an "allergic" reaction to it and had to stop Apparently, it is a potent nitric oxide scavenger. Quote Link to comment Share on other sites More sharing options...
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