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

[Tristen]

@Dufresne , yea I do experience both improved PEM and mental clearing together, but I haven't watched it close enough to say whether one is more pronounced than the other on day one vs day two.

@Wayne .... I would be interested to know how you felt after taking a few Ty3's a day for a few days. See if you get this same kind of response. For myself, even though these drugs work so well, I must find an alternative to narcotics.

 

[Dufresne]

@Wayne, I haven't heard anyone complaining of constipation from taking LDN.

There's no doubt our nervous systems take a hit with this disease, and some of this could be considered damage, but I don't think this damage is what's responsible for the symptoms. I've had every one of my symptoms completely resolve at one point or another.

 

[Tristen]

@Dufresne ... I wanna hear how it goes for ya with the LDN. Got me going on that one again and I think it's important to follow closely those like you and myself who are responding to things the same. Obviously not everyone with me/cfs has our kind of response to opiates. So are you continuing with the Ibudilast? Have a link for any support forums focused on using it for me/cfs or related?

 

[Tristen]

I think it would be interesting to note how those, other than just myself, with this positive response to opioids, respond to LDN. Seems to be 3 groups with LDN response....those with zero response, those with positive response, and those like myself who get much more ill on LDN.

 

[nokmax76]

Very interesting thread. There was me thinking it was just me. Too tired to post much but just wanted to say I was given co-codamol a while back for pain. It's a combination of paracetamol and codeine (only 8mg's worth of codeine phosphate). It does jack for pain but I did notice a sustained improvement in my thinking while taking it. I still take it occasionally as I was luckily given a huge box of the stuff with a three year expiry date.

Also, I get no-side effects from it eithier. I researched the drug and all I found, predictably I guess, are addiction stories like so:

http://www.dailymail.co.uk/health/a...-turning-unsuspecting-women-drug-addicts.html

Was actually going to post about it until I saw this thread. Will come back when I'm less fugged, read through and hopefully contribute more. This site has it all really. Wish I had joined much earlier....

 

[acrosstheveil]

opoioids seem to be a miracle for my symptoms. too bad they are considered taboo...

 

[Iquitos]

Cannabinoids are helping me in many ways, more each day. Pain, sleep, less brain fog and exhaustion and now joint stiffness and exteme pain upon walking or trying to spread my legs, all getting a little better every day.

And cannabis is no longer "taboo" here in Colorado, either as medicine or "recreation." I just wish we had a lot of research on those 85+ cannabinoids in cannabis, especially on which varieties are best as a medicinal herb, and what the dosages should be. I'm growing two varieties that have low THC and high CBD, but I don't have any way to find out what the percentage of the other cannabinoids is. It's all trial and error at this point.

 

[acrosstheveil]

that's great and alll...i used cannabis for several years but suddenly developed an allergy to it. I Now get anaphylactic type reactions to even just the smell of it. Wish i knew why.

 

[Iquitos]

@acrosstheveil Have you tried any of the non-smoke alternatives like CBD drops or herbal tincturing? That's how I use it.

 

[acrosstheveil]

I have not but I react just from smelling the raw buds so I would be scared to try a tincture of it. It is strange because I get an aniphylaxis type reaction from the female buds but I can take hemp oil no problem. it is very frustrating because I used it for about five years on a regular basis before I developed the allergy. I miss it.

 

[Iquitos]

@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.

 

[Tristen]

I have not but I react just from smelling the raw buds so I would be scared to try a tincture of it. It is strange because I get an aniphylaxis type reaction from the female buds but I can take hemp oil no problem. it is very frustrating because I used it for about five years on a regular basis before I developed the allergy. I miss it.

You may already know this, but some naturopaths are pretty good at successfully treating allergies. Some mainstream docs dealing with allergoes may be able help with this as well......but then you would need one OK with pot. May be worth a few phone calls. Be nice if you could resolve that allergy.

 

[acrosstheveil]

yea, i don't think any doctors around here would be okay with pot. maybe it will go away in time. not hopeful though, none of my other allergies/sensitivies have gone away.

 

[Dufresne]

I think it would be interesting to note how those, other than just myself, with this positive response to opioids, respond to LDN. Seems to be 3 groups with LDN response....those with zero response, those with positive response, and those like myself who get much more ill on LDN.

Hey Tristen. Thought I'd tell you about my most recent go on naltrexone. I tried the generic stuff from ADC that I've been recommending to those looking for an online source. Whoops… that's bad stuff. It plunged me into PEM. I couldn't even walk my dog. I had to slow down all my movements to keep the PEM at bay. I'm going back to crushing up Revia tablets. Was it Revia you originally tried?

 

[Tristen]

Hey Dufresne, been a while. I don't know for sure which Rx brand I had for the naltrexone because it was compounded. The 5mg strength my doc ordered had to be compounded. I've never had a good response to LDN. In fact horrible both times I tried it. Really strange that I do well on Suboxone, which as you know includes naloxone.

I'm currently using the Butrans patch. It's Buprinorphine without the naloxone. (Suboxone without naloxone). It the best I've found yet for my pain and ME issues....and there is no narcotic buzz, which is what I've been looking for. The patch stays on for a week. The only downside I can see, is the cost. My insurance covers it, but if not the out of pocket would be $480.00 per month.

 

[JAH]

I thought I'd report back on some of my observations taking Baclofen, as well as opioids.

To my dismay some of the symptoms I'd thought would be helped by the Baclofen, PEM and post-reading malaise, were untouched or even exacerbated at high doses of the drug. I'd theorized that these symptoms would improve based on my response to GBL, also a GABA-B agonist. So the reasoning was these symptoms could be ameliorated by addressing the underlying excitotoxicity.

I slowly worked my Baclofen dose up to 320 mg/day and this was certainly too much. I experienced erratic moods, falling asleep through the day and waking up at night. There was also a worsening of my post-reading malaise. So I dropped the dose down to 240 mg and am comfortable without any of these nasty effects. In fact I'm enjoying improvements.

The drug, as expected, combats excitotoxicity. As a result I've more mental energy and a clearer head. I feel calmer, more motivated and am getting a lot done. My mood and libido are also elevated. The severity of my fasciculations has been cut in half. However what I find most interesting is the effect it’s had on my sleep schedule. I've actually fallen effortlessly into a normal circadian rhythm. I'm hardly able to keep my eyes open after eleven o'clock, and then I wake up between 6 and 7 the next morning.

So the symptoms I was hoping would be treated with the Baclofen are actually responding better to opiates. The major difference between GBL and Baclofen, besides the half-life, is the effect on endorphins. Baclofen is very specific to the GABA-B receptor, while GBL has a high to it. It turns out if I pop an Oxy or a Statex I'm able to read or engage in physical activity that would have been beyond my capabilities without developing PEM. To the point I can actually workout a little. I've no idea how far I can push this as, like everyone here, I've been conditioned by horrible crashes in the past. Though this is something I'm going to have to test further.

I find I'm even better the next two days after my opiate dose. This is similar to what Tristen describes. I believe the benefit is especially pronounced in combination with the Baclofen. At times it’s like my brain just lights up and I don't feel sick anymore! It's very encouraging. I'm thinking I'll start with LDN. If that doesn't work I'll try full dose Naltrexone. If that doesn't get me there I'll try a modest dose of Suboxone, etc, until I find something that works.

This is really fascinating to me as I have a large bottle of Baclofen by my side, which I am taking in low doses for muscle spasming. Now thinking of slowly increasing the dose to see what would happen. Do you have a doctor recommending a specific protocol for you, and theory for why it helps? How much of the opiate do you add?

Thanks for posting, great discussion.

 

[Dufresne]

This is really fascinating to me as I have a large bottle of Baclofen by my side, which I am taking in low doses for muscle spasming. Now thinking of slowly increasing the dose to see what would happen. Do you have a doctor recommending a specific protocol for you, and theory for why it helps? How much of the opiate do you add?

Thanks for posting, great discussion.

Hey JAH. It's very clear to me when I've gone too high with baclofen. As this happens I simply titrate down.

I used to notice that if I cut my protein intake, eating the less acidifying meats according to the macrobiotic diet, I'd have to cut my baclofen dose as well. I strongly believe my G/G (glutamate/GABA) imbalance is correlated to the pH of my terrain and my oxidative stress/redox situation. Treating babesia significantly decreased my need for the drug, and I've convincing anecdotal evidence this is due to a change in these dynamics. So that's my protocol: do if by feel.

I don't take opiates regularly, as I don't want to go down that road. However I've noticed this increased PEM threshold on regular therapeutic doses of opiates. I think the best way to go with this stuff, if indeed you notice the same benefits with opiates, is to try LDN. The woman who wrote the tome on ME/CFS treatments that Cort has highlighted on Health Rising has virtually eliminated her PEM through this alone. Unfortunately it doesn't seem to have such a pronounced effect on most. If this doesn't work for you, Tristen's approach might be worth trying.

 

[acrosstheveil]

another drug you may be interested in is memantine it is an nmda antagonist and can help reduce excitotoxicity. it has also been well known to help reverse tolerance to medications.

 

[Tristen]

The Butrans is best I've found so far......but I'm still looking because I still want something completely non narcotic that will have similar affect. I keep playin with the idea of giving the LDN another try.

 

[Dufresne]

another drug you may be interested in is memantine it is an nmda antagonist and can help reduce excitotoxicity. it has also been well known to help reverse tolerance to medications.

I've thought about this one quite a bit. I know there's a current study testing it on ME patients. But I've read of at least a couple doctors expressing concerns about possible negative long term effects.

I'll just reiterate that the benefit I enjoy with opioids is different from that of interventions geared at excitotoxicity. Both can help clear my head but the endorphins actually combat the PEM.

I was reading that article over on Health Rising, as well as the posts that follow it. Chris Pfeiffer pasted a letter from Cheney to his patients where he discusses a few other treatments and mentions LDN.

Interestingly, endorphins also block the neurotoxic effects of inflammatory cytokines so endorphins have dual influences on pain relief, especially in the brain.

http://www.cortjohnson.org/blog/2014/08/25/cheney-chronicles-protocol-chronic-fatigue-syndrome/

I've always felt there was this sort of protective action of endorphins. Jonathan Edwards puts forth an idea about neural sensitivity that can complicate some cases of ME:

3. ME3 is not really a subgroup, but a causal component. It may ‘gang up’ with other MEs so that they feed off each other through regulatory pathways. ME3 is a resetting of brain sensitivity to all sorts of ‘noxious’ stimuli. It may well operate through feedback involving the autonomic nervous system. In some cases it may be reduced by the sort of voluntary strategies encouraged by ‘talking therapies’ but very often I suspect it is completely impervious. My own analogy is my tinnitus. Sometimes it seems unbearable and stops me sleeping or enjoying the quiet countryside and at other times I forget I ever had it. When it is there I cannot tell myself to not have it.

For me this relates back to Martin Pall's idea of neural sensitization. In my case these noxious stimuli would be mycotoxins, chemicals, Lyme and co, etc. And yes, combatting oxidative stress by boosting GSH does target this, but I've always found such boosts were unsustainable. I believe this is because I still can't recycle the GSH due to energy problems. Endorphins though, seem to be targeting this neural sensitivity from a different angle. It's too bad they're laden with all sorts of other issues.