Author Topic: Is POIS a version of CFS?  (Read 17419 times)

Muon

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Re: Is POIS a version of CFS?
« Reply #20 on: December 09, 2020, 07:40:28 AM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

« Last Edit: December 09, 2020, 11:01:57 AM by Muon »

Journey

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Re: Is POIS a version of CFS?
« Reply #21 on: December 09, 2020, 12:22:57 PM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.

Muon

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Re: Is POIS a version of CFS?
« Reply #22 on: December 09, 2020, 12:29:40 PM »
See contents: Book preview

an-y-more

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Re: Is POIS a version of CFS?
« Reply #23 on: December 10, 2020, 09:48:22 AM »
Quote from: J.G
It's worth noting that observations regarding POIS in / and / or MECFS go back (at least) some 25 years. Noted ME specialist Dr. Jay Goldstein in his 1996 Betrayal by the Brain:

"Several of my male patients have complained that they feel exhausted for several days after ejaculating. Although little is known about the central neurochemistry of orgasm, it appears that NE [norepinephrine] facilitates it, and that NE is depleted after ejaculation. If a male neurosomatic patient were deficient in NE prior to sexual activity, ejaculation could thereby worsen his symptoms" (Goldstein 1996: 63).

Norepinephrine is synthesised from dopamine. Goldstein postulates a "dopaminergic hypofunction" in MECFS.
Ref

I wonder which are the earliest records out there clearly talking about someone reporting fatigue/brainfog/physical/etc. symptoms after orgasms is there any such data from let's say the 70s or 80s? The earliest POIS appearance I read about was from a Reddit user named /u/c-rockett88 who got it in the 70s and has relief from it by taking DAO, C vitamin, D vitamin and some other supplements and he believes it's excess Histamine causing POIS for him but I wonder if there are more POISers who got it around that time or even earlier unfortunately ones that might have had it earlier would be harder to find because they could be less likely to use the Internet or might not know POIS is a thing and so on etc.
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use. 

Muon

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Re: Is POIS a version of CFS?
« Reply #24 on: December 10, 2020, 11:06:25 AM »
I remember someone on this forum posted about symptoms appearing back in 80s. This person said it developed after antibiotic use.

https://poiscenter.com/forums/index.php?topic=3098.msg31156#msg31156

Muon

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Re: Is POIS a version of CFS?
« Reply #25 on: December 10, 2020, 06:51:08 PM »
Video about Marian Lemle's Hydrogen Sulfide theory

I get the impression that POIS puts you into a state of semi-hibernation. I believe a few POISers here said the same thing.


Mr Raba

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Re: Is POIS a version of CFS?
« Reply #27 on: December 24, 2020, 12:20:20 AM »
Hi,

I actually flew to LA to see Dr. Jay Golgstein circa 1990.  Such a nice guy. I had read his book. Maybe it was not fully published then.

He tried sequentially many of the meds in his list. I could not tell what did what because of the short time they were all administered while in his office. Eventually and due to the literature of the time I tried  oxytocin shots. That went badly.  DHEA went far worse. It gave me a bad case of OCD that took more than a decade to finally go away. It worked some first, but then I caught chicken pox while on it and what a horrible experience, also and when  I tried to go back on it. Like going insane. What I learned with the decades and trials is to very careful taking active hormones that put a forcing function on my tenuous hormonal equilibrium.


Goldstein told me that he knew of several men with just POIS symptoms that had sought his help. So my combo case (POIS and CFS which are labels describing symptoms) was nothing new to him. He did not have a cure for either but it was so nice to talk to great Dr. that got our suffering and dedicated his life to the neuroscience of these conditions. Of course CFS has come far ahead since then.

Although Goldstein knew the conditions were related somehow more than 25 years ago, I am just starting to see greater interest from some POISERs and CFSers on looking at what light one condition might share on the other.

His book is very interesting history. The new science on CFS that helps me as a combo sufferer on both fronts is light years ahead and is well
described and published in this site. 

https://www.healthrising.org/


   
« Last Edit: December 24, 2020, 12:33:47 AM by Mr Raba »
Simultaneous onset of CFS and POIS since Feb 1993. Married since 1989.

Helped by Immunocal (I explained how to take in previous posts).  Some relief on day one and day two.  It affects neurotransmitters.

Muon

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Re: Is POIS a version of CFS?
« Reply #28 on: December 24, 2020, 10:55:31 AM »
This is mindblowing info Mr Raba. Do you know if he managed to fix at least one POISer? And if so what did he give this patient? Thanks for sharing this.
« Last Edit: December 24, 2020, 11:19:52 AM by Muon »

Muon

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Re: Is POIS a version of CFS?
« Reply #29 on: December 24, 2020, 01:45:25 PM »

demografx

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Re: Is POIS a version of CFS?
« Reply #30 on: December 24, 2020, 05:24:59 PM »
Sent Mr Raba’s post to POIS Research Team (Dr Prause is in L.A.)

Thanks, Muon, for your alert.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Hopeoneday

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Re: Is POIS a version of CFS?
« Reply #31 on: December 25, 2020, 08:35:49 AM »
« Last Edit: December 25, 2020, 08:41:51 AM by Hopeoneday »
Dr-pois.

Hopeoneday

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Re: Is POIS a version of CFS?
« Reply #32 on: December 25, 2020, 08:45:06 AM »
https://me-pedia.org/wiki/Neuroinflammation

Posible mast cells open BBB then microglia activation....
Dr-pois.

Hopeoneday

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« Last Edit: December 25, 2020, 12:33:36 PM by Hopeoneday »
Dr-pois.

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Re: Is POIS a version of CFS?
« Reply #34 on: December 25, 2020, 08:53:48 AM »
« Last Edit: December 25, 2020, 09:13:23 AM by Hopeoneday »
Dr-pois.

Hopeoneday

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Re: Is POIS a version of CFS?
« Reply #35 on: December 25, 2020, 09:01:07 AM »
https://me-pedia.org/wiki/Myalgic_encephalomyelitis#Other_diagnostic_criteria

The following are some syndromes and diseases that have been associated with or misdiagnosed as ME:

    fibromyalgia[87]
    chronic Lyme disease[88][89]
    idiopathic intracranial hypertension[86]
    postural orthostatic tachychardia syndrome[90][91]
    irritable bowel syndrome[87]
    thyroid disease[92]
    Ehlers-Danlos syndrome[92]
    Sjögren's syndrome[92]
    multiple chemical sensitivity[87]

Clinical findings
Alem Matthees is an Australian ME patient that filed an FOI request for data from the PACE trial. At a great cost to his health, Alem appealed the denial of the data and won. This data proved the results published in The Lancet were untrue. Alem's health suffered significantly in part from the efforts required for the FOI request and tribunal
Although there is no definitive biomarker, several signs and findings have been frequently observed in clinical settings:

Clinical findings fit in POIS
High antibody titers to specific infections (including EBV,[33]HHV-6,[34][35]and Coxsackie B[36][37] among others)
    hormone imbalance[38]
    immunological abnormalities[39][40][41]
    low natural killer cell function[42]
    low red blood cell magnesium[43]
    postural orthostatic tachychardia (POTS)[44][45]
    physical and mental exertion, sensory input cause relapse (PEM)[46][47]


Signs and symptoms fit in POIS and MCAS

Myalgic encephalomyelitis is a neurological disease that affects multiple bodily systems, causing a widespread combination of symptoms.[28] Symptoms can range from mild to very severe and can include:

    ataxia (coordination difficulties)
    cognitive dysfunction
    fatigability
    gastrointestinal symptoms
    headache
    low-grade fever, temperature instability
    muscle weakness and fatiguability
    myalgia (muscle pain)
    neck and back or spinal cord stiffness
    neuralgia (nerve pain)
    othostatic intolerance
    post-exertional malaise
    sensitivity to heat or cold
    sensitivity to light, sound and/or touch
    sleep dysfunction[28]
Dr-pois.

Hopeoneday

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Re: Is POIS a version of CFS?
« Reply #36 on: December 25, 2020, 09:09:19 AM »
Dr-pois.

Journey

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Re: Is POIS a version of CFS?
« Reply #37 on: December 25, 2020, 10:55:41 AM »
All explained mepedia:
https://me-pedia.org/wiki/Myalgic_encephalomyelitis
Interesting there seems to be alot of data showing that ME/CFS/POIS could have actual physical reasons for them how do you think what is the very root cause that started the rest of the dysfunction cascade in those disorders?

Nas

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Re: Is POIS a version of CFS?
« Reply #38 on: December 25, 2020, 12:44:26 PM »
Mr Rabaa

Based on Goldstein's diagram found here: https://forums.phoenixrising.me/threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/page-6#post-582561

You feel worse by taking dopamine agonists like Oxytocin and DHCA. So according to the diagram you should feel better if you use ketamine agonists, dopamine antagonists and Benzodiazepine antagonists. And Goldstein would recommend adenosine drops as treatment for this condition.

Didn't he go for this plan with you?
« Last Edit: December 25, 2020, 12:46:00 PM by Nas »

demografx

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Re: Is POIS a version of CFS?
« Reply #39 on: December 25, 2020, 07:50:03 PM »

Amazing! (I don’t live far away from Dr G. - - although he might’ve moved since the 90’s)
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business