It's been awhile since I posted here on LDN. I believe I was one of the first advocates of LDN, maybe about 8 years ago. I feel I should mention that I am not Ashley and that I do not have PD although my father did for about 16 years. My name is John and I've been posting for my wife, Wendy, who has had tremor dominant PD for about 8 years. For several reasons, I thought it would be easier to post under another name (her neuro did not want her to take LDN back then so we thought her name should not be mentioned. Wendy did not like spending time on this subject as well. I found the idea of LDN to be fascinating and had hope in it protecting the brain from inflammation.
To come up to date, Wendy, stopped taking LDN about a year ago because she didn't think it was doing much. I believe it has slowed her progression but there is no way to know. She has progressed especially this year and has had a number of serious falls. Her first fall resulted in a fractured femur and surgery (long rod fixation to femur). She was recovering from that injury but fell again a few moths ago with several fractures to her pelvis. No surgery required but she is in a lot of pain and uses a walker or crutches to get around. I believe her first fall was due to too much Mirapex 1.875 mg (and maybe a few glasses of wine). The Mirapex appears to have caused ankle/leg swelling, low BP, some irrational thinking etc. She will be seeing a new PCP and neuro (the ones she had dropped the ball on her) so I hope she will be cut back on the Mirapex and she can get back to where she was before her falls.
On LDN, I am with Robert, the research on opioids done at the NIH by Dr. Hongs group is compelling but I see nothing being done by the drug companies to build on his work. LDN can be expensive and hard to get. I would go with Roberts DXM and avoid the LDN hassle.
I an sorry to mislead the Group on our identity. But Wendy just didn't want be reminded of her PD.
Regards, John