Author Topic: Another new member  (Read 25809 times)

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Offline sassyfras

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Re: Another new member
« Reply #60 on: July 11, 2010, 01:30:01 AM »
Wow, what an interesting collection of posts here in response to my last one! Unfortunately I am overwhelmed with matters in my life right now and just don't have the time to address all the cool stuff y'all have brought up~~~~but I promise I will come back & do so at my first opportunity. I want to thank each one of you for contributing so much insight & knowledge to this very important topic. CFS is utterly debilitating and can change your life overnight in many cases. It's just the way Roy describes...it's not just tiredness....it is the most profound fatigue a person could ever imagine, but if you've ever experienced really wicked PAWS you'll have at least an idea of what it's like. I've personally known 3 people with CFS who committed suicide & suicide was my own sweetest fantasy for over 3 years. Having a son still at home who was dependent on me is the ONLY thing that stopped me. CFS is that bad. And it's far more widespread than people know....& who knows how many undiagnosed CFS sufferers there are?

My case is kind of interesting because it took for me to experience lengthy periods of both CFS and PAWS (at different times) to recognize that these conditions were virtually identical. It is baffling to me that no one else, esp doctors, has seen this....if a person in a state of severe PAWS went to see a doctor & if this doctor wasn't told about the PAWS, the doctor would order a slew of tests. All of them would come back negative and eventually the patient would be given a diagnosis of CFS. The treatments & prescription drugs for both conditions are identical too...ssris, neuroleptics like neurontin, soma, etc. none of which really do much good.

Well, it's late & I'm falling asleep here. I 'll come back to continue with this discussion asap!

Offline roy d

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Re: Another new member
« Reply #61 on: July 20, 2010, 11:30:28 AM »

Hi Eon,

Sorry I missed your post when you asked "Do you ever have good days where the lead-suit symptoms are not present?

I went months without a good day.  Imagine eating a can of soup for lunch and the other half for dinner, losing weight, diarrhea constantly sometimes it may fade away but then comes back.  In a way it seems similar to the mono virus but I would say it is much stronger.

You said you fell fatigue when you get depressed, that is normal.  When you are suffering from depression you have low energy levels.  Depression can make ya sleep more or sometimes you can not sleep.
But CRF is more than just fatigue and depression.  It is like your third
or fourth day on w/d.  I thought that it was opiates from six months ago and wondered when it would let up.  I noticed I felt better when I took opiates - yes strange, I know.  Now if you were a Dr and I said to you DR. I need some opiates because when I don't take them I get sick and tired what do ya think the Dr will say?  Right - kick the habit dude, I'm not giving you anything.  The symptoms are Exactly like w/d - Exactly.

It really is nice to know that others noticed how opiates make ya feel better - no joking, really.

Take Care Eon,

 Roy

Offline sassyfras

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Re: Another new member
« Reply #62 on: July 20, 2010, 01:58:32 PM »
Yeah, Roy, the similarity between opiate withdrawals and CFS is so striking that I can't believe no one in the medical field has written about that! Or even noticed it? But them again, if I hadn't suffered with CFS (undiagnosed) for so long (before opiates) and then some years later going cold turkey after I'd been on opiates for a couple of years, I probably wouldn't have made the connection either.

I wore that lead suit every single day for nearly 3 years. CFS literally brought me to my knees. I was like, "Lord, kill me or heal me, I can't go on like this". Walking from one room to the next left me breathless & dizzy. But after one week on opiates I was out walking first a half mile, then a mile and soon I was running again. But you're right, no doctor would give us opiates to treat the symptoms of CFS, no way! Opiates are for treating pain, period.

I'm glad that you've made that connection too, Roy. Have you ever thought about going on an LDN regimen? Many people with CFS/FM have said that it's the only treatment that's ever helped with their symptoms....which makes total sense, of course, since what LDN does is stimulate your body into making up to 200 -300% more endogenous opioids. I sure wish I'd have known about that before I went on opiates!!! From everything I've learned these last years I believe the LDN and Iboga hold the most hope for us.

Offline Eon T McKnight

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Re: Another new member
« Reply #63 on: July 20, 2010, 04:17:17 PM »
Roy, thanks for answering that for me.  During the depths of depression I have wondered if I had CFS.  I no longer think that is the case.  BTW, both you and Sassy have my sympathy.  Having had the 'pleasure' of experiencing both deep depression and withdrawal, the thought of those symptoms going on and on makes me shudder.

Sassy, does LDN stand for Low Dose Narcotic?  Do you think that there is something different about CFS that would not require dose escalation?  Opies were way too slippery of a slope for me when trying to relieve depression.

My Best 2 U 2,

Eon


Offline GratefulDad

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Re: Another new member
« Reply #64 on: July 20, 2010, 04:22:01 PM »
LDN is Low Dose Naltrexone.   http://en.wikipedia.org/wiki/Low_dose_naltrexone    It is an opiate antagonist, which in low doses, blocks endogenous opioids.  This causes the body to produce more of it's own endogenous opioids, or from what I have read, that is my understanding.  Be glad to hear more about it, though, myself..
« Last Edit: July 20, 2010, 04:24:18 PM by GratefulDad »
GratefulDad

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Offline Eon T McKnight

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Re: Another new member
« Reply #65 on: July 20, 2010, 11:44:25 PM »
Thanks, Dad.  They didn't say in wiki; can you get high from naltrexone?

"Low Dose Naltrexone has not been approved for use by the FDA."  What does that mean, ya gotta use lots to keep Big Pharma happy?  (Pardon me, is my cynicism showing?)

There has been recent research that shows gluten causes leaky gut resulting in systemic inflammation in something like 133 people in a thousand  --  a huge number, epidemiologically.  Have either of you, Roy or Sassy, tried a gluten-free diet for a month or two?

I apologize for my lack of understanding re: CFS; is it possibly caused by inflammation  --  which could cause havoc elsewhere?

~eon

Offline sassyfras

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Re: Another new member
« Reply #66 on: July 21, 2010, 02:10:41 AM »
No, Eon, you definitely can't get high from naltrexone! Naltrexone is an opioid antagonist & GD gave a good explanation of how it works. The FDA approval was given for the old 50mg dose for treating opiate addiction....at that high dose naltrexone prevents any opiate/opioid from filing the receptors...it also prevents any chance the addict might have of simply feeling good even naturally. Not surprisingly, there wasn't a high degree of compliance with this drug.

But at the much lower doses of the LDN protocol, (1 - 4mg.) it has an entirely different mechanism of action in that it actually stimulates the body into producing MORE of it's own natural opioids. And small doses of an antagonist like naltrexone, when given along with an opiate, potentiate the analgesia/euphoria of the opiate and help prevent tolerance. Pain Therapeutics of California has been working on a formulation of oxycontin with a small dosage of naltrexone added to it that will be called "Oxytrex".

Big Pharma isn't the least bit interested in LDN because the patent on naltrexone ran out decades ago. There's no money to be made with LDN.

I found that a gluten free diet definitely helps the symptoms of leaky gut...I avoid gluten foods as much as possible. I don't think that inflammation is the cause of CFS, but then I haven't been keeping up with the latest findings re that. My symptoms are nearly 100% controlled by opiates.

Offline roy d

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Re: Another new member
« Reply #67 on: July 21, 2010, 09:05:09 AM »


Hi All,

Eon -  I had them check to see if I was allergic to gluten which came out negative.  It is a hard thing to prove as there is no virus, bacteria, antibody or damage to the liver or whatever.  It's as if you got to take the patients word for it.  Some dr do not believe it exist or chalk it up to depression or HEP C or even psychological problems.  There are multiple symptoms similar to Lyme disease. If I had leaky gut syndrome I believe they would of found it by now or maybe I would be dead, never heard of it before.

Oh, if your taking any kind of opiate, even cough syrup you should take
stay away from naltraxone - it really matters.

 Roy

Offline Eon T McKnight

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Re: Another new member
« Reply #68 on: July 21, 2010, 05:19:52 PM »
Sassy, interesting info on LDN!  If it stimulates the body to produce more endorphins, it might be useful for depression.  Wonder if they tested LDN on recovering opie addicts.  Probably don't want to give it to those people if they could still get high on opies.

Ahh, no patent no profit.  I should have guessed.

Don't opies have anti-inflammatory properties?


Hiya Roy!

Have a Native American friend with sprue (Celiac disease), a genetically based allergy to gluten.  The docs thought he was just another drunk indian; he thought he had been run over by a fully loaded cement truck.  It took quite a while for one smart doc to realize that the genetic trait is somewhat common in NAs.  Sounds like what they put you through for CFS.

Good to see they have a test for gluten.  For those without medical insurance, just cutting out wheat, rye and barley for a month should tell you if you're one of the sorely afflicted...     ;)

~et
« Last Edit: July 21, 2010, 05:30:41 PM by Eon T McKnight »

Offline sassyfras

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Re: Another new member
« Reply #69 on: July 22, 2010, 04:21:29 PM »
Roy wrote:
"Oh, if your taking any kind of opiate, even cough syrup you should take
stay away from naltraxone - it really matters."

This is true with the full 50mg dose of naltrexone...taking that amount would definitely throw you into sever precipitated withdrawals if you were on opiates. But the 1 - 4mg. naltrexone doses used in LDN do NOT have that effect at all and actually potentiate the opiate & help prevent tolerance to it. A lot of people freak out just hearing the "naltrexone" word because of it's associations with withdrawals & so they don't even investigate it's potential in it's LDN form. I think it was over at Bluelight that a bunch of heroin users were talking about LDN & said that since they discovered that they never shoot up without adding in a small dose of naltrexone. They all agreed that their heroin use was greatly enhanced and lasted much longer as a result. 


Yes, Eon, it has been tested on depression and it helps a good deal. Since depression seems to be a big part of all the autoimmune illnesses this is an important benefit of LDN. I don't think they've tested LDN on recovering addicts....but I've heard that there are a few forward thinking addiction doctors who put all their opiate addicted patients on LDN after detox. And there was a long thread by a fellow who had weaned off of Suboxone & then started LDN. He was amazed at the energy he had & how great he was feeling just days after starting. It's such a shame that there is so little research or effort put into helping addicts~~~ that's just because the general consensus is still that addiction is primarily a character flaw, a moral weakness.

You asked : " Don't opies have anti-inflammatory properties? "

I'm not sure about that one, Eon. What I do know is that opiates strengthen the immune system...which is why opiate users seldom get sick...unless it's from poor lifestyle habits, esp among street addicts. I just read an interesting article comparing the use of opiates & NSAIDS for treating osteoarthritis.The opiates were found to be far more effective than the NSAIDS & had fewer negative side effects. I personally consider opiates to be an amazing medicine that can help many, many people regain functionality in their lives. It's a shame that they have been demonized so much and are so often withheld from people who really need them. I realize of course that there are people who flagrantly misuse/abuse opiates, but there are also many "high functioning" addicts who are able to live productive & worthwhile lives. Good science, good medicine falls to the wayside when uninformed opinions & prejudice take front row seats.



Offline riverhaven

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Re: Another new member
« Reply #70 on: July 22, 2010, 05:22:29 PM »
Exactly Sassy- you hit the nail on the head.  We never get the level of research we need to help with addiction-- and it can affect so many people.  How many arthritics out there are there??  And with the baby boomers becoming old farts LOL-- there will be plenty more people needing pain relief from their old over used joints.  LDN would be a great thing to add to an arthritis regimen.   

Nal makes me nervous because you remember I had that odd reaction to it-- as did several other women I know of increasing the urge to drink.  I never have tried the low dose nal though-- I only was on the 50 mg to quit alcohol and then however much was in those CF5s. 

Offline Eon T McKnight

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Re: Another new member
« Reply #71 on: July 22, 2010, 06:16:21 PM »
Thanks, Dad.  I goofed when posting.  I moved it to Meditation and Mental Control where I intended to put it.  ~eon
« Last Edit: July 23, 2010, 10:25:57 PM by Eon T McKnight »

Offline GratefulDad

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Re: Another new member
« Reply #72 on: July 22, 2010, 07:22:05 PM »
I have been discussing something on the vox list that seemed to fit well in this topic.
Are you sure about that?  This was about needing opiates, low dose naltrexone, and ibogaine.  Not sure where exactly that all ties in with reaching a higher spiritual plane..
GratefulDad

"If trees could scream, would we be so cavalier about cutting them down? We might, if they screamed all the time, for no good reason."

Offline roy d

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Re: Another new member
« Reply #73 on: July 23, 2010, 06:11:30 PM »

Hi Eon,

They do have a test for Celiac disease and as always things came out negative.

 Roy

Offline Eon T McKnight

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Re: Another new member
« Reply #74 on: July 23, 2010, 11:23:21 PM »
In a way that's too bad Roy.  If it was celiac, the symptoms would be pretty easy to eliminate.

Did some scrounging and found a doc who claims success for refractory depression with LDN and SSRIs.  Me, SSRIs have nasty side effects and I keep away.  I am certain that it would not be a problem combining LDN with the moclobemide I'm taking.

I found that moclo decreased opiate side effects, gave me a longer ride and I needed less.  I'm not sure why; the moclo must be acting on some cascade substances since MAO does not chop up endorphins or opies.  (Or maybe it was all in my head?)

After about ~10 years of using opiates on and off (more on than off) a little bump of endo-opiates might be a good thing for me.  Since escalating the dose will not happen  --  due to the most unpleasant side effects  --   it doesn't scare me much.

Plus, once endorphin production is back up, it might stay that way after quitting Naltrexone.

I did a bit of searching, but could only find the 50mg version online w/ no scrip needed.  That would require splitting up each pill into ~20 equal parts!  Though, one pill dissolved in 200ml would give you 20 portions of 10ml = 2.5mg Naltrexone.

Heres's a good LDN site:

     http://www.lowdosenaltrexone.org/

It would indeed be nice to get some of the benefits of opiates, without all the other BS, from my own body.

~et