Failed Experiment With Low Dose Neltrexone

[Lenna]

Hi,

I've been meaning to report on my son's short trial of Low Dose Neltrexone (LDN). I wish I could tell you that it was his miracle drug, but it wasn't.

After being denied a prescription for LDN by his neurologist and his pediatrician who were unfamiliar with it, we found a doctor who practices intergrational medicine - a combination of traditional and holistic medicine. He has had POTS patients in the past, and had prescribed LDN in the past, but never prescribed LDN for a POTS patient. He was skeptical but willing to give it a try. We ordered the LDN from Skips Pharmacy in Florida and Skip Lenz is a wealth of information about it.

Dan started on a low dose - 1.5 mg. - with the goal of raising it to 3.0 mg. after 2 weeks. Maybe we should have started even lower, considering how sensitive Danny is to meds. Anyway, for the first 2 or 3 days he had no change. Then he started to feel much worse. All his POTS symptoms kicked up to a higher gear.

The difficulty, of course, is knowing whether Dan's symptoms worsened because of the LDN or despite the LDN. But after 2 weeks, I consulted the doctor and Skip Lenz. They both recommended discontinuing. They both felt that POTS is not a disorder that would respond to LDN.

If anyone else tries LDN, please let us know what you experience.

Lenna

[icesktr189]

aw im really sorry to hear that! i was hopeful because my mom just got some for her Crohns.. hopefully it helps her atleast

[juliegee]

Sorry, Lenna-

I hate to see a treatment option for your son fail. Our kids go through so much!

I don't know anything about LDN. Tell me HOW it was supposed to help POTS.

Thanks-

Julie

[erik]

The few things I've heard of LDN are that although it is an opioid blocker (antagonist), the low dose approach is theorized to minimally & temporarily block opioids so as to prompt the body to increase it's natural production slightly overall. Opioids are not simply pain related, some are apparently regulatory of other processes in the body. As others have mentioned, LDN is also credited with giving a "normalizing" or "boosting" effect to the body's immune system.

I might be mistaken, but I believe those that have reported luck with it were mostly finding reduction in fatigue sorts of symptoms. Not sure if official studies have yet demonstrated this for other conditions. Almost certain it has yet to be studied in POTS. I personally don't think there is much to go by in terms of guessing how likely it is to help or hurt with POTS, so I'm hesitant to dismiss it and hesitant to get too excited about it. Seems about as likely to help with POTS as with other conditions that some folks report success with... so maybe in the end it will help for some POTSies.

http://www.lowdosenaltrexone.org/

I've definitely felt healthier overall when taking a mild opioid (Soma) so I'd be personally curious if something like LDN could do similar for me if it does give a slight indirect boost to endogenous opioid production.

[juliegee]

The few things I've heard of LDN are that although it is an opioid blocker (antagonist), the low dose approach is theorized to minimally & temporarily block opioids so as to prompt the body to increase it's natural production slightly overall. Opioids are not simply pain related, some are apparently regulatory of other processes in the body. As others have mentioned, LDN is also credited with giving a "normalizing" or "boosting" effect to the body's immune system.

I might be mistaken, but I believe those that have reported luck with it were mostly finding reduction in fatigue sorts of symptoms. Not sure if official studies have yet demonstrated this for other conditions. Almost certain it has yet to be studied in POTS. I personally don't think there is much to go by in terms of guessing how likely it is to help or hurt with POTS, so I'm hesitant to dismiss it and hesitant to get too excited about it. Seems about as likely to help with POTS as with other conditions that some folks report success with... so maybe in the end it will help for some POTSies.

http://www.lowdosenaltrexone.org/

I've definitely felt healthier overall when taking a mild opioid (Soma) so I'd be personally curious if something like LDN could do similar for me if it does give a slight indirect boost to endogenous opioid production.

That's a great explanation. Thanks, Eric. I wonder f it could help my son too.....

[Lenna]

Julie,

Sorry I didn't respond earlier, but I think that Erik gave you a good explanation. In a nutshell, low dose naltrexone is thought to stimulate endorphin production, and endorphins are thought to help regulate the immune system. So autoimmune diseases, like MS and Chronic Fatigue Syndrome, respond well to LDN. As Erik pointed out, the main benefit is a decrease in fatigue. Some cases of POTS overlap with CFS and may have an autoimmune component so my thinking was that if this is true for Dan, maybe LDN would help him. I'm not sure we gave it a good enough trial, but Dan wants nothing to do with it now because it really made him feel worse. So if anyone else tries it and has success, I'd love to hear about it.

Lenna

[dsdmom]

It is my understanding, and from speaking with Skip @ Skip's pharmacy in Boca, LDN works by switching your immune system's balance from th2 to th1. There's a lot behind that, but I didn't think it had much to do with endorphins at all, unless the endorphins themselves work on modulating the immune system.

So as far as using ldn for pots. it's not that it's indicated for that but rather that people have had good results with it for CFS, and many people with CFS also have pots or autonomic issues. So if you just have staight pots it might not do anything to help you.

That being said - Lenna, doesn't your son have CFS as well? Interesting that he felt worse on it. Out of curiosity, are you planning on getting your son tested for XMRV if/when the time comes?

[Lenna]

Yes, I do believe that the endorphins modulate the immune system. This is from the lowdosenaltrexone.org site:

In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body's normal production of endorphins is the major therapeutic action of LDN.

dsdmom, my son has not been diagnosed with CFS...that's not to say he doesn't have it. Given the possibility of CFS, I thought it was worth a shot to try LDN. His doctors feel that he has post-viral POTS, though I'm not clear on exactly what virus they're referring to. It makes my head spin!

Right now we're doing a lot of adrenal testing. He has 2 tiny (8 mm) adrenal nodules that showed up on an abdominal CT scan; though it is unlikely that they're causing his problems, we need to know for sure. He's scheduled for an MRI with contrast and lots of blood work.

[dsdmom]

From speaking at length with Skip, lowdosenaltrexone.org isn't a fantastic site in that it has sort of been abandoned. Apparently a lot of the information on there hasn't been updated in a really long time - as far as Dr. Bihari's theory of "The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production."

As I type this I am just remembering that I am pretty sure that Skip said that the endorphin theory is what didn't pan out.

If anybody does want more info on LDN I recommend calling Skip's Pharmacy in Boca Raton, FL. He can better explain the mechanism behind it.

Lenna, I'm sorry, I thought your son had been diagnosed. Does he have post-exertional fatigue/malaise?

Good luck with the scan...let us know how it goes.

[Troy]

I have been considering naltrexone or naloxone for sometime now to counteract the adverse reaction that I have towards all opiates. I suffer from chronic pain and its been exteremely difficult trying to take the opiates due to my chemical sensitivityso I was hoping I could solve that problem with a low dose of naltrexone but my specialist refused as he said that I could also have an adverse effct to the naltrexone, I'm still curious to try it tho so any suggestions on how much to use at first ? How much was your son taking ?

[dsdmom]

I just started LDN last week - I initially started at .25mg and got a terrible headache. So I skipped a night and then restarted at .1mg. It's an extremely low dose, but I guess there are some people who take very low doses. Still dealing with headaches, some stomach issues, including pain and constipation. But trying to stick it out. I recently tried Imunovir and stopped because of headaches. I really want/need one of these immunomodulators to work since my immune system is such a wreck.

Yesterday I completely overdid it - physical therapy in the morning and then a dr's appt 1.5hrs away that I went to on my own and had no nap. Today I have been very sick - feel like I have the flu, sore throat, tired, orthostatic symptoms worse. Hoping it goes away soon....but thinking I may skip tonight's LDN. The problem with LDN is that there is no real protocol that has been established. Yes, Dr. Bihari came up with some ideas but there have been no controlled studies. Some people take it every other day, some take it 2 days on, 1 day off...at various doses. So it's hard for me to figure out what I should be doing right now...think I'll call my doc tomorrow and take a break tonight.

[Noreen]

Hope you are feeling better.

Given the reports, I would try again when I had a week to ten days clear to allow your body to adjust. I hope it works for you but I know it generally will take 6 months to know. LDN did recently get approval for study under NIH.

You've probably seen this e-book with patient stories but just in case. LDN has also been used as a topical prep, apparently with good results, and that modality might be worth looking into if you can't tolerate the pills.

best of luck

[ramakentesh]

I know of a patient with POTS/OI who found LDN therapy helpful. I also have Ankylosing Spondylitis so was gonna give it a crack for that one day.

As for being diagnosed with CFS - the most widely accepted criteria for CFS now has a pre-requisite of 'Autonomic' symptoms - so most POTSies would cruise into that diagnosis.