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vvny

LDN for PANS ?

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Hi Everyone

 

Our doctor has prescribed Low Dose Naltrexone for our son who has severe tics and OCD from possibly PANS although they haven't been able to identify the virus causing it. Has anyone had success with LDN ? It seems to be used for autoimmue and other conditions according to this website

http://www.lowdosenaltrexone.org/

 

We are very nervous to try it and wanted to ask the expert opinion of members on this group for your opinion as well...

 

Thanks in advance !

 

Vik

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We've been using it for my DD for neuropathic pain. She has Pans but for the past 10 months, her symptoms haven't been your typical presentation. Two months ago, I stopped it, trying to get down to a lean daily regimen. Since then, her anxiety has skyrocketed and led to nightly panic attacks. I re-started the LDN a few days ago and saw immediate improvements. We are still searching for the cause of it all - but the LDN has helped a lot. I know at least a dozen families who are finding relief using it - not a cure, but a big help.

 

This is another good article...

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

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Thanks for sharing your experience with LDN. Do you think taking her off LDN caused the anxiety to worsen ? Does it cause a dependency once you start it ? I am afraid of any side effects ....did you notice any ? My son mainly has chronic vocal and motor tics along with OCD and anxiety. This cunningham panel shows elevated antibodies on one count ....He has not got full relief from antibiotics so far or with supplements.Maybe thats why he has prescribed LDN..

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I do think stopping the LDN made things worse. But not from a dependency. All the research suggests there's no addictive properties and no need to tier down when stopping (tho I did, just to be safe). I think things got worse because it was helping and I didn't realize just how much. We haven't been able to figure out the "why" behind my DD's issues and things have stayed ramped up as a result. The LDN helped keep the inflammation lower and that helped keep her symptoms more manageable. I saw no side effects. So it's back on board for our foreseeable future as we keep hunting down clues.

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LDN is very safe and it doesn't cause dependency but it has to be start low and slow and never to go over 4.5 mg dose for adult. One should start at 0.5mg dose and slowly go up. by another 0.5mg after a week or two. It can cause insomnia and very crazy dreams that seem real. Best time to take it it's in the evening around 10pm.

 

It work great for my wife with her autoimmune condition. It was not a cure as condition came back when she stopped (run out and it took compounding pharmacy a week to reorder) but it went back into remission the moment she restarted it.

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My son has been using LDN since July 2015 for chronic pain issues. He had severe scalp pain, a daily headache, and hypersensitive skin issues. After being on 3 mg of LDN for 8 weeks, his pain issues are gone. He has been pain free for over a year.

 

I also take LDN for some chronic pain issues that are caused by autoimmune illnesses. My pain issues resolved in about a month. I have been on this medication since last October. Neither I nor my son has been sick with colds, flu or other infections. It works with your immune system. Don't think either one of us will be getting rid of LDN any time soon.

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