Narcotic (Opioid) Pain Medications Relieve Some of my Neurological ME/CFS Symptoms

[melamine]

Although the absence of GAD antibodies doesn't definitively rule SPS out

That's right. It is more common to see a majority % of a diagnosed condition test positive for a particular test associated with it than 100%, and it's frequently enough a slender one at that. Then too, as I recall, it was a pass/fail test without scaling that might potentially suggest a more nuanced interpretation, unlike some of the more common autoimmune antibody tests.

 

[knackers323]

A lot of research is pointing to inflammation being the cause of our symptoms. Could it be the anti inflammatory effects of opiods that are helping symptoms?

 

[Tristen]

A lot of research is pointing to inflammation being the cause of our symptoms. Could it be the anti inflammatory effects of opiods that are helping symptoms?

Yes. I have been on opioid pain meds daily for about 6-8 months now. While on these meds, my symptoms have been dramatically reduced. I've done in depth labwork (including Shoemaker stuff) before and after taking these meds. The labwork before was off the charts high for inflammation. These same labs done recently are all in normal range. I've done nothing else to reduce inflammation.

I'm even more convinced now that inflammation is causing most of symptoms. I've taken all kinds of anti-inflammtories without ever getting any kind of response like this....labs or symptoms. I don't think opioids effect the inflammation pathway directly, but they surely seem to be effecting it downstream somehow.

Thing is, these drugs are not hitting the core problem causing the symptoms. They are only blocking it's poison. Regardless, it's wonderful to have the symptoms blocked while we head toward a cure. Many diseases are only treated by their symptoms.

 

[Wayne]

I don't think opioids effect the inflammation pathway directly, but they surely seem to be effecting it downstream somehow.

Hi Tristen,

I've really appreciated all your posts on this thread, plus the update you just posted. I have a prescription for Tylenol 4, which contains 60 mg. of codeine, and take about 1/8 of a tablet 2-3 times per week. I always feel better when I take it, but have not taken it more often because I don't want to lose its effect, which has happened with so many other things I've taken. I'm pleased to hear you take opioids daily, and continue to get consistently good results.

Have you considered whether your glutamate levels have been positively impacted by your regimen, and whether that may be one of the improvements you noticed? I recently read on this forum that glutamate levels can rise because of inflammation in the brain. Suggestions of supplementing with NAC and other things were made; would be interesting to know whether opioids can reduce glutamate levels as well. -- Thanks for any reply.

Wayne

 

[Tristen]

Hey Wayne, yes I've read a bunch about the glutamate toxicity issue too, but no I've not tested that and so I wouldn't know for sure. Can it be done with a blood test? And would it even be accurate since it's in the brain?

I told my GP about my response to opioids and she thought it may be the same as the Klonopin response issue some people have. I don't know if that's hitting the same toxoicity, because from what I've read about the response people get with klonopin, it's nowhere close to being as effective as what I and others are experiencing with opioids.

I took lots of NAC many years ago, in the beginning, and didn't notice a thing. But then I was severely ill at that time. may be different now......you know how we respond to things differently over time.

 

[Tammy]

I take opioids daily..( I would consider it a conservative dose...........compared to some anyway)............I've been using the same dose for years and still remains effective. I resisted taking opioids for some time due to various reasons (actually I was anti-prescription anything) but it improves the quality of my life to the point that I don't care about any cons. I am really curious about something...............the opioids really help with my ability to stay upright (helps with OI). Does anyone have any ideas why this might be?

 

[Tammy]

are there any other ways to raise endorphins that we haven't discussed yet?

This might have been mentioned before...........can't remember.........maybe @Hip..........d-phenylalanine can raise endorphins? Has anyone tried this and if so what was your dosage? I've been thinking about trialing it.

 

[Tristen]

I take opioids daily..( I would consider it a conservative dose...........compared to some anyway)............I've been using the same dose for years and still remains effective. I resisted taking opioids for some time due to various reasons (actually I was anti-prescription anything) but it improves the quality of my life to the point that I don't care about any cons. I am really curious about something...............the opioids really help with my ability to stay upright (helps with OI). Does anyone have any ideas why this might be?

Some great thinkers here trying to answer why, but......Sorry, I can't answer that. It is a primary reason for this thread. It should be very significant for researchers as well. It would give light to a very core problem with this disease.

Opioids effect all symptoms for me. I lost the OI after major AV Tx and before trying opioids, but I'm sure it would have effected that too because it dramatically effects all my symptoms, including PEM. I can push the stress limits much much farther. Best of all is the brain clearing. It made me cry to see how clearly i perceived life before this illness 20 years ago. Tells me that I'm not permanently damaged. But I think this OI response shows the opioid effect is not just anti-inflammatory. Just a thought.

I would like to understand not only why it's working, but also for those it doesn't work for to get a look at those differences. I would expect that to be very telling as well.

 

[Wayne]

Best of all is the brain clearing. It made me cry to see how clearly i perceived life before this illness 20 years ago. Tells me that I'm not permanently damaged.

Tristen, almost makes me cry reading your experience. Gives me hope--thanks for that. I'm starting a new regimen. I'll be taking 1/8 tablet of Tylenol 4 nightly instead of 2-3x/week.

You've probably posted earlier about different opioids you've tried, and which one you're currently doing. Could you give an update? Thanks! (I'd check myself but not feeling very functional this morning).

 

[Tristen]

Tristen, almost makes me cry reading your experience. Gives me hope--thanks for that. I'm starting a new regimen. I'll be taking 1/8 tablet of Tylenol 4 nightly instead of 2-3x/week.

You've probably posted earlier about different opioids you've tried, and which one you're currently doing. Could you give an update? Thanks! (I'd check myself but not feeling very functional this morning).

Hi Wayne, Yea, I'm not one bit exaggerating the relief I get. I didn't want to do the narcotic thing at all....but I don't want to do me/cfs 24/7 either. So, until there is an alternative that works as well, I'm going to do it. I have pain and am justified using the meds for that anyhow.

Well I can't comment about Codeine......been years since I've taken it. But, being a true opiate derivative rather than synthetic, I would expect it to work as well as any other. That is if your one of those this is going to work for. I hope so. It would take more than an 1/8 of a tab for me to get relief. But that's me. Play with it as you see fit.

I'm currently using the Butrans patch. It's the same drug as what's in Suboxone (Buprinorphine). It is narcotic, and it's as strong as I can go without getting into the drugs that are more threatening for the addiction concern. I feel no buzz or high at all. But it does work for my symptoms. The patch is only changed every 7 days which is very nice as well. Downside is that it's very expensive. But, I'm fortunate that my insurance covers it.

 

[leela]

@Tristen, you might want to look into Kratom.

 

[Dufresne]

@Tristen, you might want to look into Kratom.

Thanks leela, I'm going to look into this one.

@Tristen,
Any specifics on the labs that normalized?

 

[Dufresne]

@Tristen, interesting you should mention Shoemaker. It's now my belief that the inflammation opioids counter in me is mostly caused by babesia toxins and mycotoxins; and the synergistic effect is unfortunately greater than the sum of the parts. I'm now trying to devise and combine effective treatments for both.

 

[Tristen]

@Tristen, you might want to look into Kratom.

Thanks for the info. Looked it up and it sounds most interesting...although it appears it won't be available much longer. Have you tried it? Do you know a reputable source? What I've found is so very expensive.

 

[Tristen]

@Dufresne The Shoemaker labs I've done very recently...all were normal. I've also done a bunch of autoimmune stuff I need to dig out. haven't done any of the cytokine tests recently......those would be most interesting. I'm curious to find out what Dr Peterson has to say about this.

 

[Tristen]

@Tristen, interesting you should mention Shoemaker. It's now my belief that the inflammation opioids counter in me is mostly caused by babesia toxins and mycotoxins; and the synergistic effect is unfortunately greater than the sum of the parts. I'm now trying to devise and combine effective treatments for both.

Yes, something like infection is fueling the problem. I too have done lots of Lyme&Co work (babesia+ too). Was on some major antibiotic Tx for over a year. That was after a year of major AV treatment. It does pay to go after the infections.

So maybe the opiates are blocking the effects (inflammation?) of the mycotoxins because my Shoemaker labs were off the charts high before, and I've done nothing else to effect them. See what my LLMD says about it....probably still do all the biotoxin treatment when finished with current concerns.

 

[Hip]

maybe @Hip..........d-phenylalanine can raise endorphins?

D-phenylalanine, germanium sesquioxide, Garum Armoricum (Stabilium), menthyl valerate (Validol) and acupuncture boost endorphins. Those are the ones I know.

 

[leela]

Thanks for the info. Looked it up and it sounds most interesting...although it appears it won't be available much longer. Have you tried it? Do you know a reputable source? What I've found is so very expensive.

Sent you a PM @Tristen

 

[acrosstheveil]

i've recently started taking buprenorphine for pain and the energy I have is amazing.

 

[acrosstheveil]

@acrosstheveil You can buy CBD drops on Amazon that supposedly are made from hemp and have no THC. It sounds like the THC might be the part you are allergic to. And I absolutely understand the scary facts of anaphylaxis. After getting ME, I started having "athletic anaphylaxis" from exercising. It feels like one could die, and I think that's a real possibility.

it's the plant i'm allergic too. I can't take hemp products either so CBD drops are out too.