Author Topic: Is POIS a version of CFS?  (Read 8403 times)

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

Hopeoneday

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Re: Is POIS a version of CFS?
« Reply #40 on: December 26, 2020, 01:21:07 PM »
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?

My personl opinion is toxin-hiden infection-imune(MCAS)-mitohondria...

See here https://me-pedia.org/wiki/Metabolic_features_of_chronic_fatigue_syndrome
So, you can see from here how mitohondria affect inate imune system.

Second, many people do not understand that the first response our body mounts against a viral, bacterial, or any kind of infection is metabolic. Yes, our chemistry is our first line of defense. Our chemistry reflects our instantaneous state of health. Innate immunity is coordinated by mitochondria and is an essential first step in developing adaptive immunity to any infectious agent. Without innate immunity there can be no antibodies and no NK cell activation, no mast cell activation, and no T cell mediated immunity.

And you can se here and i bolive this to that ours bodies "shot down"
to protect him self, mitochondra(when sense danger).

Naviaux believes the mitochondria are able to sense every kind of danger – from pathogens to pH changes to toxic elements from pesticides, heavy metals, etc. to inflammation. They sense trouble in the form of an infection when they detect a drop in voltage caused by the diversion of electrons (NADH / NADPH) to make viral components or respond to a broad variety of toxins.


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Muon

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Re: Is POIS a version of CFS?
« Reply #41 on: December 26, 2020, 01:32:38 PM »
Second, many people do not understand that the first response our body mounts against a viral, bacterial, or any kind of infection is metabolic. Yes, our chemistry is our first line of defense. Our chemistry reflects our instantaneous state of health. Innate immunity is coordinated...

The first line of innate immune defense response are the defensins in your mucosa. There is actually one POISer with elevated fecal hBD2. I haven't seen more people who have done this test. https://poiscenter.com/forums/index.php?topic=3188.msg32995#msg32995

He also had low T and urinary tract infection I believe. White stuff in his urine-->defensins, hBD2?

Expression of Antimicrobial Defensins in the Male Reproductive Tract of Rats, Mice, and Humans

Toll-Like Receptor 4 in Rat Prostate: Modulation by Testosterone and Acute Bacterial Infection in Epithelial and Stromal Cells

Androgenic regulation of beta-defensins in the mouse epididymis

TRT ---> changing defensin profile? Level of hBD2 in urine or in seminal fluid?
« Last Edit: December 26, 2020, 02:12:17 PM by Muon »

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Re: Is POIS a version of CFS?
« Reply #42 on: December 26, 2020, 02:31:52 PM »
In CFS, is there a phase with complete recovery, during which the patient feels perfectly healthy? If yes, then sure, I would vote that POIS is a type of CFS, with specific trigger.

Yesterday and the day before, I was feeling great and strong. So I pushed myself on physical exercise yesterday (cardio). Only to activate my POIS and to get the brain fog and usual fatigue today.

Muon

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Re: Is POIS a version of CFS?
« Reply #43 on: December 26, 2020, 02:52:37 PM »
In CFS, is there a phase with complete recovery, during which the patient feels perfectly healthy? If yes, then sure, I would vote that POIS is a type of CFS, with specific trigger.

Yesterday and the day before, I was feeling great and strong. So I pushed myself on physical exercise yesterday (cardio). Only to activate my POIS and to get the brain fog and usual fatigue today.

Outside of triggers? Not completely from what I have read. They often have a baseline of symptoms when avoiding PEM triggers. What you are describing regarding physical exercise is what they call post-exertional malaise (PEM), often activated 24h after a trigger. People contacted me on the CFS forum telling me that they think POIS is some sort of an extreme PEM trigger related to orgasm/ejaculation. POIS, CFS, FMS, MCAS, POTS could be some kind of overlap syndromes, maybe related to brain regions. In many POISers POIS symptoms peak ~24h post O as well. Dr. Goldstein could be right, in that, POIS and CFS are related to eachother somehow.
« Last Edit: December 26, 2020, 02:56:32 PM by Muon »

Muon

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Re: Is POIS a version of CFS?
« Reply #44 on: December 28, 2020, 05:39:49 PM »
From the phoenix rising forum today; Members only thread so can't post a link. I also will not post the username:

Thread title: Dr. Jacob Teitelbaum got me well in 6 months after 8 years of illness

I had been sick for 8 years and no one could get me well. However, I saw Dr. Jacob Teitelbaum who specializes in chronic fatigue and he gave me 36 things to take and got me well in 6 months. He is now getting my sister in law well after other doctors could not help her. I highly recommend seeing him. He has around a 93% success rate and specializes in those that other doctors can’t treat. I had an antibiotic resistant bacterial infection you pick up from hospitals among other things wrong with me and in 3 months, I was much better and in 6 months I was perfectly well. He is worth seeing if you have tried everything else and it has failed.

Similar to Goldstein's approach? Anyway I will follow up on this.