Guest guest Posted August 9, 2011 Report Share Posted August 9, 2011 Has anyone anyone here tried, or know anyone who has tried, Ampligen? It is still in clinical trials, but has been submitted to the FDA multiple times. I'd love to hear about everyone's experiences, or anyone's experience. Thanks Steve M in PA, age 21 Married with 3 year old daughter Duragesic 300mcg/hr Actiq-600 (4/day) OxyIR 30mg (6/day) Grade II DIPG (Diffuse Intrinsic Pontine Glioma) Fibromyalgia Probable RSD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 Sara I will never try LDN for one reason, I would have to go off Duragesic, Actiq, & OxyIR. They also advise against taking dronabinol with LDN, which is stupid because naloxone has no effect on Marinol and vice versa. Marinol binds to the CB1 receptor, not the mu opioid receptor. Naloxone is an opioid antagonist (for opioid overdose) and does not affect the cannabinoid receptors. Marinol doesn't provide any reasonable pain relief for me (I take it to combat wasting and nausea) and PA has no medicinal marijuana laws. If medicinal marijuana was available, I would consider going off my opioids to try LDN, but until then, I just can't. The pain of tapering down from 250 to 150mcg/hr for my pump trial was almost more than I could handle. Tapering completely off Duragesic would [probably] kill me. I would have considered it before I started Duragesic, but I didn't learn about it until it was way too late. (I was taking 100 or 150mcg/hr of fentanyl when I learner about it) I am sincerely grateful for the advice. LDN does show a lot of promise for fibromyalgia patients who aren't on massive amounts of opioids. Thanks to everyone who replied. I am wishing everyone minimal pain. M in PA, age 21 Married with 3 year old daughter Duragesic 300mcg/hr Actiq-600 (4/day) OxyIR 30mg (6/day) Marinol 7.5mg (6x/day) Grade II DIPG (Diffuse Intrinsic Pontine Glioma) Fibromyalgia Probable RSD On Aug 10, 2011 11:16 AM, " grammie2304 " <sarawilliams.williams@...> wrote: have you tried LDN? Might be a good mix for your Fibro!! God Bless, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 Thanks, I did do that in the past, but I trust content from this group a lot more. Plus if I found someone here, I could have asked them questions. Steve M in PA, age 21 On Aug 9, 2011 10:53 AM, " Sue " <suebackagain123@...> wrote: hi stephen. there are several people who have reported on their ampligen experiences. just google " ampligen experiences " and you will get a lot of hits. you can check the prohealth message boards as well as pheonix rising message boards. there is also a group about ampligen. good luck sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 , I have heard of people taking opiates at the same time as LDN. This doctor works with both opiates and LDN. http://painsandiego.com/ . There might be something of interest here for you. Ellen Sara I will never try LDN for one reason, I would have to go off Duragesic, Actiq, & OxyIR. They also advise against taking dronabinol with LDN, which is stupid because naloxone has no effect on Marinol and vice versa. Marinol binds to the CB1 receptor, not the mu opioid receptor. Naloxone is an opioid antagonist (for opioid overdose) and does not affect the cannabinoid receptors. Marinol doesn't provide any reasonable pain relief for me (I take it to combat wasting and nausea) and PA has no medicinal marijuana laws. If medicinal marijuana was available, I would consider going off my opioids to try LDN, but until then, I just can't. The pain of tapering down from 250 to 150mcg/hr for my pump trial was almost more than I could handle. Tapering completely off Duragesic would [probably] kill me. I would have considered it before I started Duragesic, but I didn't learn about it until it was way too late. (I was taking 100 or 150mcg/hr of fentanyl when I learner about it) I am sincerely grateful for the advice. LDN does show a lot of promise for fibromyalgia patients who aren't on massive amounts of opioids. Thanks to everyone who replied. I am wishing everyone minimal pain. M in PA, age 21 Married with 3 year old daughter Duragesic 300mcg/hr Actiq-600 (4/day) OxyIR 30mg (6/day) Marinol 7.5mg (6x/day) Grade II DIPG (Diffuse Intrinsic Pontine Glioma) Fibromyalgia Probable RSD On Aug 10, 2011 11:16 AM, " grammie2304 " <sarawilliams.williams@...> wrote: have you tried LDN? Might be a good mix for your Fibro!! God Bless, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2011 Report Share Posted August 12, 2011 Ellen Thanks, but LDN cannot be combined with Duragesic. I know some people will use immediate release opioids with LDN, but LDN in an opioid tolerant patient causes withdrawal. I'd die before I go through withdrawal again. Steve M in PA Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.