Author Topic: POIS paper treatment summary  (Read 15453 times)

Muon

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POIS paper treatment summary
« on: October 24, 2020, 01:54:09 PM »
All patients who tried treatment have been filtered from articles. Some articles lack data such as dose, symptom reduction or drug name.
A#= Article number based on POIS paper thread
P#= Amount of patients that have tried treatment (multiple 1s for the same paper means different cases. #F= female included)
Yes= Benefit, needs context, doesn't tell you anything about efficacy.
No= No benefit. A 'No' without a patient number at the left side means the same patient as the 'Yes' above it.
Let me know if you think this thread can be improved in some ways or if you see any mistakes.
Note to editors: Adjustments of numbers in paper thread need to be adjusted here as well (first column).

A#P#Y/N
Treatment
11YesBenzodiazepine+SSRI: Paroxetine+Citalopram: Mental state only, partial relief
NoAntihistamines (pre and post O), prednisone (pre and post O), NSAA: flutamide (max=3x early morning LH): Lower libido
1NoNSAA: Flutamide (max=3x early morning LH): Lower libido
21YesNorethisterone (oral tablets 5 mg 30 min pre O): 95% relief, additional 5 mg tablets daily following 2 days post O for residual symptoms. Occasionally 10 mg within a few mins post O: 100% relief.
NoProgesterone 8% cream (daily, around nostrils and upper lip), Dopamine agonist: bromocriptine (2.5 mg daily)
31YesNSAID: Diclofenac (75 mg 1-2 hours pre O and continue twice daily for 24-48h post O): 80% relief.
1YesTadalafil: Improvement of rapid ejaculation and erectile dysfunction leads to (better) ability to penetrate female partner and reduction of symptoms.
No Same trial of NSAID: Diclofenac as patient above.
5Autologous defrosted semen intracutaneously inoculated at the volar side of the left forearm. Harvested semen samples were defrosted at room temperature and diluted with saline 0.9%. In addition, 0.05 ml of each dilution was IC injected. Skin reactions were interpreted at 15 minutes after IC injection. Titrations were performed according to local skin reaction postinoculation, aiming at a wheal and flare response of 3+.

This score was intentionally maintained for a period of at least 2 years. Practically, concentrations of semen were periodically increased at a score of 2+ or less. Oppositely, in case the score exceeded 3+, semen concentrations were lowered. Wheal erythema of 21–30 mm = 2+, erythema of 31–40 mm = 3+, wheal > 15 mm or pseudopodia and erythema of >40 mm = 4+. Each session was planned every 2 weeks for the first year and followed by once a month in the second and third year.
1YesHyposensitization: Relief 60% intensity reduction (cognitive +physical) from 4 days to 48 hours, Lifelong PE: IELT went from 10s to 5-10 min.The inoculation (titer: 1 on 40,000) disclosed a wheal and flare reaction grade 4+, and was associated with the induction of mild POIS complaints. Initially, dilutions of 1:40,000 were applied and titers were gradually increased to 1 on 20 during a period of 31 months. After 8 months 1:6 was reached and at 14 months 1:3. Total length of treatment: 3 years.
1YesHyposensitization. Relief: 90%,  nearly complete disappearance of POIS. The inoculation (titer: 1 on 40,000) disclosed a wheal and flare reaction grade 4+. Initially, dilutions of 1 on 20,000 were applied and titers were gradually increased to 1 on 280 during a period of 15 months.
71NoNSAIDs and cetirizine
91NoIbubrofen (400 mg on demand), tramadol (50 mg one hour pre-coitally), selective serotonin re-uptake inhibitor (escitalopram 10 mg daily at bedtime for 3 months).
141YesThe patient received strong analgesic TRAMADOL and anti histamine LORASTIN to be taken shortly after intercourse , he reported some benefit.
161YesFlooding
181NoSerotonergics, Benzodiazepines
1YesNeuroleptics (olanzapine, aripiprazole), Antihistamines (cetirizine, loratadine,ebastine, mequitazine), Nicotinamide, Biperiden, Association "ambenonium chloride + lecithinsoy ".
NoNeuroleptics (amisulpride, haloperidol), Food supplements (Omega 3 and Mg).
1NoAntihistamines (cetirizine), Alpha-blocker, Relaxation
211YesSymptoms improved occasionally with analgesics
221YesHyposensitization: intralymphatic immunotherapy (ILIT), Relief. Using ultrasound guidance and a 25-gauge needle, autologous semen was aseptically injected into an inguinal lymph node at a dilution of 1:40,000. Then, the concentration was increased by 3-fold.
271NoHyposensitization: The patient was submitted to immunotherapy, and although he presented an improvement of symptoms in the first year of treatment, he quit immunotherapy after two years because the symptoms returned.
291Yes
  • hCG: raising serum testosterone (T), in this case via subcutaneous injections of human chorionic gonadotropin (hCG). Relief: near-complete resolution of symptoms. Treatment was initiated with hCG 1500IU injected subcutaneously three times per week. At six-week follow-up his symptoms had resolved completely. Continued hCG after 6 months. Patient had T deficiency.
  • Adderall provided some benefit for the brain fog.
  • Anxiety, treated with propranolol
  • Alprazolam provided minor benefit.
NoHe tried various diets, supplements, niacin, and antihistamines without benefit. Bupropion, and Vyvanse (lisdexamfetamine dimesylate).
301Yes
  • The patient has a history of irritable bowel syndrome (IBS) well-controlled on loperamide.
  • Trial of cetirizine, after 4 weeks (orgasm once per week): significant improvement in abdominal cramping and reduction of diarrhea
  • Trial of terazosin, followed by several months of alfuzosin: He reported significant improvement of all symptoms on both alpha-blockers. Decided to discontinue alpha-blockers due to dizziness and significant erectile dysfunction.
  • Self-started a probiotic containing Bacillus coagulans and fructooligosaccharide (not taking an antihistamine or alpha-blocker), which he reported improved his symptoms further
NoDiphenhydramine
351FYesIn addition to oral contraceptive (1) to (6) (order of events).
  • (1)After 2 months on 2 mg dienogest, post-orgasm pain decreased; however, the patient was experiencing adverse effects including worsening migraines, acne, and joint pain. Furthermore, her sexual desire had decreased.
  • (4)Transcutaneous electrical nerve stimulation (TENS) had a small but insufficient benefit.
  • (5) 3 months 150 mg GnRH antagonist (elagolix) daily, post-orgasmic pain relief without side effects while maintaining constant estradiol levels.
  • (6) Doubling the dose to 300 mg for ~ 2 months elimated pain but introduced tolerable side effects. Clinical response remained stable 12 months after starting elagolix.
No
  • (2) 1 month of 2.5 mg of norethindrone acetate.
  • (3)Did another trial of dienogest but benefit of dienogest was decreasing over
    time; she also had noticed a 10-pound weight gain.
  • (5) 10 mg of vaginal baclofen combined with 150 mg of gabapentin.
3714Y/NFlow diagram of treatment. All 14 patients start at 1: 1-->2-->3
  • 7/14*: 8 mg Silodosin, a highly selective alpha1A-blocker, 2 h before sexual activity. Relief: Completely prevents POIS symptoms. Causes anejaculation. * (effectively 8/14) 1 stopped due to side effects.
  • 2/7: NSAID: Ibuprofen 400 mg, twice a day starting 2 h before sexual activity, for 2 days. Relief: Improvement, no # given.
  • 4/5: Glucocorticoid: Prednisone, 30 mg, taken 2 h before sexual activity and continued with 20 mg the day after.
1/14: Unresponsive to all of the above.
381YesNSAID: diclofenac 25 mg twice a day, according to article 3. Oral administration of celecoxib 100 mg once a day was as effective as diclofenac. Relief: symptoms disappeared completely.
NoAntihistamines and herbal medicines.
391YesNSAID Celecoxib 200 mg was administered daily just after ejaculation. Immediately after the intake of the drug, headache and muscle pain were relieved, and the patient was able to ejaculate 3 days per week. However, general fatigue did not improve. In addition to NSAIDs, 250 mg of testosterone enanthate was administered as a TRT every 2 weeks because the patient's serum free testosterone level was lower than 70% of the average value in young adult men. His general fatigue significantly improved, and morning erection has been achieved every day. Therefore, he can ejaculate everyday by masturbation. The interval of drug administration was changed from 2 to 4 weeks. However, no recurrence of symptoms was observed. TRT was switched to testosterone ointment (Glowmin®; Daito Pharma, Tokyo, Japan), and his symptoms continually improved.
NoAntihistamines
401YesSertraline 100 mg a day for 6 weeks. Relief: Improved anxiety, diminished sexual desire. Post-orgasm symptoms have reduced in severity by 50% and now last 2-3 days (was 5 days).
1YesDoxycycline (an antibiotic) for 6 weeks. He feels there may be marginal improvement in his symptoms having orgasmed once in that period.
NoHigh-dose levocetirizine (an antihistamine), nicotinamide and progesterone.
41154Y/NOnline survey (N=302 men). Respondents reporting improvement in symptoms with:
Niacin: 19 of 25 (76%)
Nonsteroidal anti-inflammatory medications (NSAIDs): 17 of 23 (74%)
Antihistamine: 44 of 90 (50%)
Selective serotonin reuptake inhibitors (SSRI): 18 of 47 (38%)
Benzodiazepines: 9 of 33 (27%)
431Yes50 mg hydroxyzine nightly and pseudoephedrine 1 hour before orgasm which led to a marked improvement in his symptoms.
1Yes25 mg tramadol, which he took immediately post orgasm. The tramadol led to a significant improvement of his symptoms, most significantly, the fatigue. Both men were also enrolled in sex therapy as part of their treatment.
« Last Edit: April 02, 2021, 06:20:25 PM by Muon »

Muon

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Re: POIS paper treatment summary
« Reply #1 on: November 04, 2020, 04:01:17 AM »
Method of POIS relief central hub

Please help me out by locating threads from other members and put the links in the comment section. Place a comment when your method needs to be updated. Many methods given in the list are not checked for consistency and based on criteria regarding a threshold of relief unlike Quantum's chart. The methods below are not automatically recommendations, some extreme 'solutions' are included. Some reports need follow-ups and are placeholders for the time being. Click on the hyperlinks for context.

Quantum's chart contains solutions that bring 75% or more relief of POIS Symptoms, a method that is described in details ( dosage, timing, and any relevant information necessary to "duplicate" it ), and that this solution have been effective for over 3 months or more, so that it is clear that it is not a placebo effect neither just a temporary relief that will fade for an unknown reason. It also not includes extreme or controversial solutions regarding safety. Chart of POIS types (ongoing project)

Note that some remedies aren’t for POIS but addresses other symptoms of the patient.

POIScenter

abud (Neck Massage)
Ahmad moner (Ketogenic diet, no dairy, intermittent fasting, some exercise, POIS gone)
Aladin (cetirizine + garlic + ginger)
alex372 (Mountain honey + 5mg nortriptyline)
Animus (Castration, Video)
anon7022 (Antihistamine: Allegra)
Arun (Betablocker: Propranolol)
asdfdoc (Doctor's best REAL niacin timed release 500mg, minimal flushing, with focalin)
Berlin1984 (no masturbation only sex 1-2h before sleep, Bcomplex, Magnesium, L-theanine, Ashwagandha, Rosea Rhodiola, Tribulus Terestris)
Bizzy (Antihistamines, Doxepin)
b_jim (Taurine)
bletzer (Ketogenic/carnivore diet, POIS free when maintaining strict diet)
Bob Morane (Non-systemic antibiotic: Rifaximin, probiotics, diet, stress reduction)
Buckaroobanzai88 (Prednisone, vitamine D)
Bulbo (Eggs)
cg83 (100 mg hydroxyzine and 60 mg sudafed)
CharlesB (Pepto Bismol)
Copperred (Picamilon)
CuriousCharacter (Modified POIS cascade stack)
Cursed (Taurine 2x1,5 g/day, morning and evening, once a day is insufficient)
David (TRT)
Daysleeper (Pumping the glands technique)
deloun (Boswellia serrata)
Demografx (TRT + benadryl for forced sleep, sleep, Viagra but stopped working)
doxepin (Doxepin)
Drew1312 (Dizzyness: TRT)
Dusak92 (Niacin)
eccentricbipois (Antihistamines: Hydroxyzine and Loratadine)
Egordon (Celebrex, Niacin)
emirnazim (Mestinon(pyridostigmine, acetylcholinesterase inhibitor))
Erik (Red wine, some supplements and lifestyle)
fathom (Sam-e, Alpha-GPC/PhosphatadylCholine, EPA/DHA, Multi-vitamin, benadryl, Que, Bromelain, Vyvanse ,Gabapentin)
FernandoPOIS (Huge protocol, vagus nerve, allergy, spinal problems)
findacure (Ibuprofen and Loratadine)
FloppyBanana (Iceman breathing, Mytelase/Mestinon, progesterone)
Fox (Gluten-free diet)
fsol (Quantum's pre-pack)
G (TRT)
Gino (500mg niacin nicotinamide 2-6 hours before sex, matcha tea immediately before sex, Other: gluten free, vit C)
Going less Crazy (Modified AIP diet, 100%)
Green (Testosterone, Fexafenodine, Paroxitine, Tramadol, Niacin)
guy26 (Androgel >> GnRH antagonist:leuprolide acetate > depo provera)
*Heather1111 (TRT)
happy2 (Antihistamine regime, Benadryl, Claritin, Zyrtec)
himanshu (Norethisterone)
holas (Physalis golden berries)
Hopeful (headaches, weakness, body aches:Maxi Health Kyolic Aged Garlic Liquid Extract Teaspoon before O, Teaspoon next day. Raw garlic did not help)
Hopeful Indian (Yoga)
Hopeoneday (Benzodiazepines, Coffee dose dependent)
hurray (Brainfog: Milnacipran, tried other SNRI's but to no avail, Ibuprofen: no effect)
Igy78 ((1), diagnosed with fatty liver, Silymarin artichoke capsules, 2 in the morning and 2 afternoon)
*IronFeather (Intense sweating and exercise, developed exercise intolerance after exposure to household bleach)
Itsmel (Cromolyn)
Jacob (Psychotherapy, hypnotherapy, holotrophic breathing, meditation)
Jake81 (Benadryl)
john21 (antibiotics (azithromycin)+probiotic food: cured POIS, Peptobismol: Prevented POIS, no milk, Taurine)
JohnJames (Reduced POIS from 7 to 1 day by doing the ACC Protocol, 2 years in as of 12-2020)
jotape_chile (Escitalopram)
Kasra (Brainfog, itchy eyes: 3months: 80 mg prozac + 20 mg buspirone)
kid_ (Low FODMAP diet: POIS 99% gone, collagen induces POIS)
Labyrinth (Viagra: Cerebral vasospasm/blood flow, Cinnarizine helps)
Laotzu1980 (Diazepam (Valium))
Legendary Animal (Coffee)
Limejuice (Modified Immune Competence Therapy + diet)
Limitbreaker (Low dose Naltrexone with a bit of TRT, update)
Lookingforacure (Candibactin AR + Candibactin BR)
lw (Diet, antibiotic: amoxicillin, Yoga, stress control. Relapsed, Rexepi combi 25 mg/dayfor 1 month no POIS)
Mark (Niacin and massage)
melt (Massive protocol)
Monte (Calcium and more)
Moses (Physalis golden berries)
Mr Raba (Pure encapsulations alpha-GPC + Immunocal)
Muon (Hyposensitization therapy, Questions)
Muon's brother (Benzodiazepines but stopped due to tolerance and addictive effects. Nootropics had some effect)
Mushnikk (500mg L-Theanine 45min b4 O, CBD oil (5 drops of 15% full spectrum oil) b4 O and the following two days two drops.)
nanna1 (POIS Cascade stack + Betaherpesvirinae stack)
Nas.Car (Serenoa repens)
Nightingale (Neuroprotek)
nipois (TMS program)
Observer (Niacin protocol)
Olaf (CBD oil, Diclofenac also works)
Opiesdad (Bupropion (wellbutrin, latest), Propranolol 30-80 mg: Brain fog, headache, social anxiety. SSRI & LDN worsen symptoms)
Orlands (2 Gallons of water and Himalayan salt a day)
Outsider (Mytelase + Soy Lecithin, cholinesterase inhibitor)
Physi (Physalis golden berries)
pois1 (Hyposensitization therapy)
POIS_DICK (Methylene blue)
POISrival (Acyclovir (zovirax), lamivudine)
Prospero (Ixprim : Paracetamol 325 mg + Tramadol 37,5 mg taken directly after O, or Codeine (+Paracetamol), no POIS)
Qiao (Tension releasing exercises)
Quantum (Diet, exercise/yoga, abstaining, psychotherapy, mast cell stabilizers, 5-HTP and more)
Quasar (Tonsillectomy, antibiotic, Nolotil (Metamizol) and Paracetamol for pain. What fixed his POIS?)
quotz (TRT)
ramore (Goji berries a handful of it a few times a day)
redapples (Apples, red delicious)
Ricardo Brasil (Garlic: Brain fog)
Rinat (Niacin, methionin, taurine. Lidocaine spray on glans 30 min prior to sex)
Robson (Removed gluten and lactose from diet)
romies (prepack:5HTP, Que, curc, NAC, celebrex)
Saved (30ug thyroxine before sleeping, and 50ug selenium in the morning)
Simon66 (Various stuff click link and scroll down)
sop (Smoking Cannabis)
swell (Diet, Beef thyroid glandular, VitC, flavonoids, TMG, Sam-e, Carbonyl Iron, Glutathione, Butyric acid)
Syil (Adrenal boosting yoga)
*takedrugstoletgo (Dextroamphetamine but stopped working)
Tantalus (Hyposensitization/desensitization therapy, 4 years, health progr. average 70%  top 90%)
ThisType (phosphatadylcholine, Vit B complex, exercise, choline food)
tom (Certain strain of Cannabis)
trusttheprocess (Antibiotic Azithromycin, also anti-inflammatories and MC stabilizers including neuroprotek (needs link))
Tryingtomakeitwork2 (L theanine for premature ejaculation)
UnderstandingPois (prozac, vit d, calcium, magnesium, ENERGIZE by ISATORI)
Vandemolen (hyposensitization therapy, medical 20% CBD oil at least 1 drop in the morning and one before bedtime a day)
Vincent M (Personal protocol)
vinred (Claritin (Combination of: Pseudoephedrine, Loratadine))
*vonstermommy (Taurine 3x1000mg/day, formerly: 300 mg Niacin on (near)empty stomach, wait for flush then sex. Benadryl, tylenol)
Wolf (Diphenhydramine Hydrochloride Tablets)
Wolf berry (Removal of wisdom teeth and/or antibiotic: amoxicillin, for pain: IBuprofen and Paracetamol)
yesyesyes (Drotaverine, selective inhibitor of phosphodiesterase 4 (PDE4))
youcefrouiba (Brainfog: 200 mg elemental iron a day(several months), 1000 mg Vit C a day, "i also took lactulose syrup at night for the constipation that comes with iron supplementation.", low hemoglobin)
ZombieRehab (Mainly Iodine, Note: Gluten-free diet and various vitamins and minerals)

Anonymous member 1 (Cabergoline, HCG and testosterone)
Unknown 1 (Low dose cocaine=no POIS, ritalin, alcohol)
Unknown 2 (Viagra)
Unknown 3 (A doctor from one of the POIS papers told me a patient of his fixed his POIS with over-the-counter CBD oil, can't remember the dose)

REDDIT

Akt1 (I use loratadine 10 mg one hour before O. that has worked well for me. But ginger and/or hemp tea before O also worked)
aquantiV (50mg hydroxizine + ~70 drops of cleavers tincture in water. Alternate hydroxyzine with diclofenac 75mg when tolerance break or extra emergency kick is needed. All taken immediately upon ejaculation, or precum release if I don't intend to ejaculate. Precum requires only half doses of everything)
dexpois (Diet and sunlight)
I_BELIEVE_IT_FAM (Mega dose Vitamin D3)
ijustwanttofunction (875mg of Amoxicillin every 12 hours for 8 days, Probiotica 7, for NE:Prozac+ Benzodiazepine)
jjdoe6(Update) (DNRS, diet, lifestyle, supplements: histaquel, vit D)
Kostasska (Antihistamine: Bilastine 40 mg, works after 2-3 hours)
Kurtosis (low FODMAP+VSL3, diet, vitamins+flavonoids, fatty acids)
LovingProjector1 (Bilateral Orchiectomy: no POIS, TRT, update)
maxidoom8 (Tyrosine b4 O, theanine after O, b-complex and fish oil the next day, 70-80%)
noldus52 (Vitamin K, taking Minimum 200 mgc vitamin k1. I tend to up the dosage here and there with no ill effects. 1000 IU D vit pr day now in the winter, bad effects from K2 mk7/mk4.
POIS_hell (Best: Phenibut 500mg-1g on an empty stomach, often in the morning the next day after a release. Cold showers, Wim hof breathing, Intermittent Fasting: One Meal a Day, Heavy weightlifting, Coffee)
ronyrockford (Vitamin D)
Tsep7 (500 mg Niacin twice a day)
YemAli (Deltacortil, Taking it 4 hours before O. Started of with two tablets, then increased to three because two wasn’t doing it enough, slowly tapering it off by 1/3 of the medicine after 15 times of doing it. The tablet is 5 mg. + Montelukast sodium + esomeprazole magnesium delayed release)

NAKEDSCIENTISTS FORUM

Tip: How to search through Nakedscientists forum

Chewbacca (Daily sex with a woman he really likes)
danireland2 (Mainly flush niacin 1tablet (500mg), multivitamin, vitC and zn, finasteride (0.75 - 1mg, 3 times or so per week))
drmmeha (Get rid of stress sources, stop masturbating with hand, exercise, supplements mg, ca, zn)
duke0knight (Yoga + some herbs)
EDS (Flush type Niacin 100 mg on empty stomach an hour before O, TRT (stopped due to side effects))
Nova (Testosterone patches: 80% drop in POIS symptoms)
ophicus1213 (Pois Is 75 percent better on Sam-e and clarinex. Niacin, L-trytophan, L-Tyrosine, and Gaba.)
Pablo445 (Diet low in oxalic acid, stopped eating soy: no more urinary tract infections (infections or sterile inflammation?))
raja55 (Stress management)
tarkington (Relora three times 250 mg a day, swanson health, =extracts of Magnolia officinalis (bark) and Phellodendron amurense (bark) )
Tired of this (Niacin 100 minutes before an O, "Nature's Way produces the best results for me")
Willem (Sublinqual hyposensitization therapy, Treatment process)

PHOENIX RISING FORUM

J.G (Abilify (aripiprazole) 0.2mg for ~6 weeks. Improvement in ME + secondary POIS)

* = Female POIS sufferer or wife/girlfriend of POISer
Names without a hyperlink means info received via personal message.

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Various

Nanna1's Immune competence therapy

Meds for PGAD/GPD and considered for use in POIS by B. Komisaruk and I. Goldstein

Filter out treatments from the summary of treatment thread: https://poiscenter.com/forums/index.php?topic=75.0

All members' experiences with fenugreek: http://poiscenter.com/forums/index.php?topic=1057.msg9548#msg9548

All members' experiences with Vitamin B Complexes: http://poiscenter.com/forums/index.php?topic=1059.msg9571#msg9571

All members' experiences with antihistamines: http://poiscenter.com/forums/index.php?topic=1060.msg9574#msg9574

And lastly all members' experiences with saw palmetto: http://poiscenter.com/forums/index.php?topic=1061.msg9577#msg9577
« Last Edit: September 13, 2021, 04:25:28 PM by Muon »

Muon

  • Hero Member
  • *****
  • Posts: 2367
    • MCAD Thread
Re: POIS paper treatment summary
« Reply #2 on: November 04, 2020, 04:03:43 AM »
Treatment compilation of other conditions

Let me know if you find treatment compilations of other conditions which are based on literature or found better alternatives for the ones below. I will add them. How to unlock full paper (=bypass paywalls).

Anxiety (1) (Hip's list)

CFS/ME / Fibromyalgia: (1), (2), (3), (4), (PEM), (Recovery stories)

Complex Regional Pain Syndrome: (Vasomotor Disturbances), (1)

Colitis: Lymphocytic, collagenous and mast cell colitis, (1)

COVID-19

Delayed type Hypersensitivity (Type IV): Any compilations available? (1), (2, kudzu root), (3), (raising IL-4)

Ehlers-Danlos Syndromes (1)

Endothelial Dysfunction: (1)

Neurosomatic disorders (J. A. Goldstein's treatment algorithm)

Irritable Bowel Syndrome, (Microbiome), (Future)

Mast Cell Activation Disease

Osteoporosis

Postural Orthostatic Tachycardia Syndrome (1) (2)

Premature Ejaculation (1), (2), (3)

Sexual Headache: Aliskiren, Milnacipran, Norethisterone, Diltiazem

Small Fiber Neuropathy

Small Intestinal Bacterial Overgrowth (SIBO): (1)

Viral Infection (1)

Find treatment that targets the vagus nerve: "Treatments that target the vagus nerve increase the vagal tone and inhibit cytokine production"

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Specific targeting

Antifungals/antimicrobials: Probiotics, Essential oils, Candibactin?, Flavonoids: Fungal, Bacterial, Fungal skin infection feet: Vicks vaporub ointment (Muon's experience)
Adenylyl cyclase (inhibition is type dependent): Activation of MT1/MT2, CB1/CB2, Opioids, Nicotinic acid
Adrenergic receptors (Beta Agonists, Antagonists)
Antibiotics, nonabsorbable/nonsystemic: Rifaximin, Neomycin
Aryl hydrocarbon receptor: ?
Benzodiazepine alternative: Magnolia bark
BDNF: Pridopidine, Exercise, ketogenic diet, fasting
Catecholamines (decrease): Clonidine, (Nicotinamide 1, 2)
CD38 inhibitor: (1)
COX inhibitors: (1)
(Micro)glia inhibitors/neuroinflammation: Phytotherapy, spironolactone, Luteolin+PEA (!)
Cytokine antagonists: (1), (2)
Dopaminergic drugs
Gut microbiota modulation: 1, 2, 3, 4
Hypovolemia: Fludrocortisone, Desmopressin, Increasing fluid + salt intake, elevate head of the bed during sleep.
IL-10: NAD+, Wim Hof breathing
IL-17A: NAD+ (increase)
Innate lymphoid type 2 cells: ?
Intracellular calcium T-cells: THC/CBD (increase)
MRGPRX2
MMP inhibitors
MTOR: Rapamycin, luteolin, P4, 1, 2
Mucosal/gut inflammation: Butyrate, L-glutamine, Video, Trypt/melatonin
NAD+: Nicotinamide riboside (Niagen)<--most efficient, Nicotinic acid, Nicotinamide, Flavonoids, Table1
Nitric Oxide (Synthase) modulators: 2012, 2009, TRT
NMDA Receptor
NLRP3
PAR-2 antagonists: ?
ROS scavengers: ?
Sigma receptors: SSRI, Ammonium Salts, Pridopidine
Testosterone: (1)
TLR4
Th1/Th2 modulation: Th1 dominant, Th2 dominant, (1), L-theanine, Moducare, Flavonoids, Antidepressants, Cannabinoids (needs link), Histamine
Translocator protein (=peripheral benzodiazepine receptor)
Treg modulation: (IL-2 therapy), (TRT), (NAD+), (High-dose cholecalciferol), (CBD), (L-92), (SCFAs), (Luteolin), (Probiotics)
VEGF inhibitors: ?
Zonulin: Larazotide acetate

Synergies/Bioenhancement
Let me know if you find synergies in literature

Curcumin and piperine
Catechin and Caffeine
Synergism between luteolin and sulforaphane in anti-inflammation
Luteolin and Tangeretin
Luteolin + (ultramicronized) Palmitoylethanolamide
Antioxidant activities of curcumin and combinations of this curcuminoid with other phytochemicals

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Drug repurposing

Drug Repurposing Patent Applications July–September 2019
Drug Repurposing Patent Applications October–December 2019

Pharmaceuticals/supplement specific reviews

Caffeine
CBD
(Ultra) Low-Dose Naltrexone
Flavonoids: (1), (2), (3), (4), (Anti-Fungal), (Anti-Bacterial)
Testosterone
L-Theanine
Probiotics: Autoimmune
Tranilast
Vitamine B3 (Note there are three forms): ?
Pepto-Bismol

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Dietary intervention

List of diets (wikipedia)

Low histamine diet; food compatibility list

Low-Antigen-Content Diet (LAC-diet)

https://www.siboinfo.com/diet.html :
 
SIBO bi-phasic diet (B-PD)
Specific Carbohydrate Diet (SCD)
Gut And Psychology Syndrome Diet (Gaps diet)
Low FODMAP Diet (LFD) (Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols)
Cedars-Sinai Diet (C-SD)

Elemental Diet

Autoimmune Paleo diet (AIP)

anti-inflammatory diet (ITIS diet)

Mediterranean diet (1, 2, 3, 4, 5)

Find links for:

Carnivore diet
Keto Diet
Low-sulphur diet
Lectin free diet
Vegan Diet

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Non-pharmaceutical intervention
Videochannels could be added

Acupuncture
Box breathing
Chiropractical manipulation
Cognitive behaviour therapy
Cryotherapy
Dynamic Neural Retraining System (DNRS)
Physical therapy
Hyperbaric oxygen therapy
Hypnotherapy
Massage
Meditation
Physical countermeasures: Orthostatic intolerance
The Mindbody Syndrome (TMS)
Tai-Chi
Wim Hof breathing
Yoga (Vagus: Sudarshan Kriya Yoga, depression: Iyengar yoga)

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Lifestyle support

https://forums.phoenixrising.me/threads/ideal-computer-setup-in-bed.81205/

Precor 240i Commercial Series StretchTrainer, Back stretch/pain, Going less Crazy

Wedge pillows

Optimized Living: Helpful Existing Technologies for Life with Dysautonomia

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Products used by members
Share the products you are using in the comments. Supplement search
Pure EPA fish oil, mind 1st, Iwillbeatthis

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Cost/availability of medicine per country

Let me know if you have found a website that shows the cost/availability of medication in your country.

The Netherlands
« Last Edit: September 11, 2021, 06:17:04 PM by Muon »

Muon

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Re: POIS paper treatment summary
« Reply #3 on: November 04, 2020, 04:06:56 AM »
POIS onset trigger: Antibiotics

Some people developed POIS due to triggers (stress is most commonly seen from my own observation, =Gut/brain?, CRH?).
Reminder to dive into this.
Bob Morane and Simon66 developed POIS after use of antibiotics (need links). Some probiotics have positive effects while others negative.
IronFeather had some relief from antibiotics (Colitis). Her mother diagnosed with lactose intolerance + IBS, the latter triggered by stress.
Quote from: Pierce et al.
Self-started a probiotic containing Bacillus coagulans and fructooligosaccharide which he reported improved his symptoms further
Bletzer had a bad experience with antibiotics, improved on keto (his dad has a lactose intolerance).
as for Meatball4u ("I tried antibiotics (xifaxan), herbal antimicrobials, and too many probiotics to remember. I developed severe food intolerances, allergies, joint pain and anxiety. Did not help with POIS") from reddit. Strains could be mapped.
Vandemolen used antibiotics and probiotics. Cefuroxim had some effect but stopped working.
John21: antibiotics (azithromycin)+probiotic food fixed POIS. (he used antibiotics in 2007, follow up on this)
Guy from youtube: enema. Improvement.
Kurtosis: VSL#3 + low FODMAP. Improvement.
Muon was given a 11-day trial of metronidazole due to positive lactose H2-test. Had no effect.
4everfogged had good results for 3,5 weeks on an antibiotic+TRT+vitamins. Antibiotic: Clarithromycine Teva.
Clues thinks he developed POIS due to over-prescription of Tetracycline.
kid_: POIS 99% gone with low FODMAP diet. Collagen, needs update.
lw had good result from antibiotic: amoxicillin, rifaximin didn't work.
A POISer had good results with coffee enema (need to look up who it was). Dumping it here could be related to microbiome shift or with MCs
Youcefrouiba used lactulose which is an osmotic laxative (and FODMAP?).
Wolf berry has been given amoxicillin during extraction of wisdom teeth. No POIS.
CharlesB: Azithromycin didn't do much for him. Dead yeast found in stool (microscope, won't be detected by culture test)

Eur79: https://poiscenter.com/forums/index.php?topic=2007.msg18443#msg18443

my pois got back after being food poisoned. Currently I'm taking co-trimoxazole and symptoms are reducing rapidly.

History of med use:
Antibiotics, yes. SSRIs no.

Salt inhibits microbial growth. Orlands' salt intake could just be doing that aside from anti-histaminergic or blood volume expansion effects. Salt-rich diet increases Th17 (needs link and a fact-check).

Literature antibiotics/microbiome:
The Impact of Low-FODMAPs, Gluten-Free, and Ketogenic Diets on Gut Microbiota Modulation in Pathological Conditions

Azithromycin: Mechanisms of action and their relevance for clinical applications

https://academic.oup.com/jac/article/74/Supplement_1/i6/5300216?login=true

https://genomemedicine.biomedcentral.com/articles/10.1186/s13073-016-0294-z?utm_content=buffer962b3&utm_medium=social&utm_source=pinterest.com&utm_campaign=buffer

Other POIS triggers

EnriqueM075: Possible clonazepam withdrawal

ROUGH VERSION:

Article 1

Patient 1
Yes: Benzo+SSRI: Paroxetine+Citalopram(dose?): Mental state only partial relief
No: antihistamines (pre and post O), prednisone (pre and post O), NSAA: flutamide (max=3x early morning LH): Lower libido

Patient 2
No: NSAA: Flutamide (max=3x early morning LH): Lower libido

Article 2

Yes: Norethisterone (oral, 5 mg 30 min pre O): 95% relief, additional 5 mg tablets daily following 2 days post O for residual symptoms.
Occasionally 10 mg within a few mins post O: 100% relief.
No: Progesterone 8% cream (daily, around nostril and upper lip), Dopamine agonist: bromocriptine (2.5 mg daily)

Article 3

Patient 1
Yes: NSAID: Diclofenac (75 mg 1-2 hours pre O and continue twice daily for 24-48 post O): 80% relief.

Patient 2
Yes: Tadalafil: Improvement of rapid ejaculation and erectile dysfunction leads to (better) ability to penetrate female partner and reduction of symptoms.
No: Same trial of NSAID as patient 1.

Article 5

Autologous defrosted semen intracutaneously inoculated at the volar side of the left forearm. Harvested semen samples were defrosted at room temperature and diluted with saline 0.9%. In addition, 0.05 ml of each dilution was IC injected. Skin reactions were interpreted at 15 minutes after IC injection. Titrations were performed according to local skin reaction postinoculation, aiming at a wheal and flare response of 3+. This score was intentionally maintained for a period of at least 2 years. Practically, concentrations of semen were periodically increased at a score of 2+ or less. Oppositely, in case the score exceeded 3+, semen concentrations were lowered. Wheal erythema of 21–30 mm = 2+, erythema of 31–40 mm = 3+, wheal > 15 mm or pseudopodia and erythema of >40 mm = 4+. Each session was planned every 2 weeks for the first year and followed by once a month in the second and third year.

Patient 1
Yes: Hyposensitization: Relief 60% (cognitive +physical) and shorter duration. Hyposensitization: The inoculation (titer: 1
on 40,000) disclosed a wheal and flare reaction grade 4+, and was associated with the induction of mild POIS complaints. Initially, dilutions of 1:40,000 were applied and titers were gradually increased to 1 on 20 during a period of 31 months. After 8 months 1:6 was reached and at 14 months 1:3. POIS went from 4 days to 48 hours while intensity reduction 60%. Total length of treatment: 3 years. Lifelong PE: IELT went from 10s to 5-10 min.

Patient 2
Yes: Hyposensitization. The inoculation (titer: 1 on 40,000) disclosed a wheal and flare reaction grade 4+. Initially, dilutions of 1 on 20,000 were applied and titers were gradually increased to 1 on 280 during a period of 15 months. Relief: 90%, nearly complete disappearance of POIS.

Article 7

No: NSAIDs and cetirizine
?: Recommended oral prednisone, no comment if it had any effect.

Article 8

?: A low dose Amitryptyline was prescribed along with Jacobson’s progressive muscular relaxation was done. He was prescribed Salbutiamine [Arcalion] for symptomatic relief from fatigue.

Article 9

No: Ibubrofen (400 mg on demand), tramadol (50 mg one hour pre-coitally), selective serotonin re-uptake inhibitor (escitalopram 10 mg daily at bedtime for 3 months).

Article 14

Yes: The patient received strong analgesic TRAMADOL and anti histamine LORASTIN to be taken shortly after intercourse , he reported some benefit.

Article 16

Yes: Flooding

Article 18

Patient 1
No: Serotonergics, Benzodiazepines

Patient 2
Yes: Neuroleptics (olanzapine, aripiprazole), Antihistamines (cetirizine, loratadine,ebastine, mequitazine), Nicotinamide, Biperiden, Association "ambenonium chloride + lecithinsoy ".
No: Neuroleptics (amisulpride, haloperidol), Food supplements (Omega 3 and Mg).

Patient 3
No: Antihistamines (cetirizine), Alpha-blocker, Relaxation.

Article 19 (Female only, recommendations)

Seizures (Orgasmolepsy): anti-epileptics
Headache (Coital Cephalalgia): beta?blockers and/or antimigraine medication. In patients who do not improve on these medications, indomethacin or a calcium channel antagonist such as verapamil can be tried. Anticonvulsants such as topirimate can be successful in some cases that are otherwise resistant to treatment.

Sneezing:antihistamines, nasal decongestants, and nasal anesthetics.
Muscle Weakness/Paralysis (Cataplexy): It may be that use of amphetamine, dextroamphetamine mixed salts, 2.5–10mg taken 30 minutes prior to sexual activity may help these patients as the pharmacologically mediated heightened adrenergic activity may counteract the cataplexic symptoms.

Peripheral Aversive Symptoms:
Genital Pain (Dysorgasmia): Reports claim low dose tricyclic antidepressant amitriptyline (50mg) can be helpful. If abnormal, magnetic resonance imaging of the sacral and lumbar spine should be considered. If pathology is noted, a focal epidural steroid and local anesthesia nerve block is likely to reveal diminution of distracting genital pain wth orgasm (dysorgasmia) symptoms.
Facial/Ear/Foot Pain: successful treatment involved a sympathomimetic agent to counteract the reduced post-orgasmic sympathetic nervous system activity.

Article 21

Yes: Symptoms improved occasionally with analgesics

Article 22 (needs editing, more details)

Yes: Hyposensitization: intralymphatic immunotherapy (ILIT), Relief. Using ultrasound guidance and a 25-gauge needle, autologous semen was aseptically injected into an inguinal lymph node at a dilution of 1:40,000. Then, the concentration was increased by 3-fold.


Article 26

Yes/No: The patient was submitted to immunotherapy, and although he presented an improvement of symptoms in the first year of treatment, he quit immunotherapy after two years because the symptoms returned.

Article 28

Yes: hCG: raising serum testosterone (T), in this case via subcutaneous injections of human chorionic gonadotropin (hCG). Relief: near-complete resolution of symptoms. Treatment was initiated with hCG 1500IU injected subcutaneously three times per week. At six-week follow-up his symptoms had resolved completely. Continued hCG after 6 months. Patient had T deficiency.
Adderall provided some benefit for the brain fog. He was under the care of a psychiatrist for anxiety, treated with propranolol. Alprazolam provided minor benefit.
No: He tried various diets, supplements, niacin, and antihistamines without benefit. Bupropion, and Vyvanse (lisdexamfetamine dimesylate).

Article 29

Yes: The patient has a history of irritable bowel syndrome (IBS) well-controlled on loperamide.
Trial of cetirizine, after 4 weeks (orgasm once per week): significant improvement in abdominal cramping and reduction of diarrhea.
Trial of terazosin, followed by several months of alfuzosin: He reported significant improvement of all symptoms on both alpha-blockers. Decided to discontinue alpha-blockers due to dizziness and significant erectile dysfunction.
Self-started a probiotic containing Bacillus coagulans and fructooligosaccharide (not taking an antihistamine or alpha-blocker), which he reported improved his symptoms further.

No: Diphenhydramine

Article 33 (female)

In addition to oral contraceptive (1) to (6) (order of events).

Yes: (4)Transcutaneous electrical nerve stimulation (TENS) had a small but insufficient benefit. (5) 3 months 150 mg GnRH antagonist (elagolix) daily, post-orgasmic pain relief without side effects while maintaining constant estradiol levels. (6) Doubling the dose to 300 mg for ~ 2 months elimated pain but introduced tolerable side effects. Clinical response remained stable 12 months after starting elagolix.

Mixed: (1)After 2 months on 2 mg dienogest, post-orgasm pain decreased; however, the patient was experiencing adverse effects including worsening migraines, acne, and joint pain. Furthermore, her sexual desire had decreased.

No:(2) 1 month of 2.5 mg of norethindrone acetate. (3)Did another trial of dienogest but benefit of dienogest was decreasing over
time; she also had noticed a 10-pound weight gain. (5) 10 mg of vaginal baclofen combined with 150 mg of gabapentin.

Article 35

Flow diagram of treatment. All patients (14) start at 1. (1)-->(2)-->(3)
(1) 7/14*: 8 mg Silodosin, a highly selective alpha1A-blocker, 2 h before sexual activity. Relief: Completely prevents POIS symptoms. Causes anejaculation.
(2) 2/7:  NSAID: Ibuprofen 400 mg, twice a day starting 2 h before sexual activity, for 2 days. Relief: Improvement, no # given.
(3) 4/5: Glucocorticoid: Prednisone, 30 mg, taken 2 h before sexual activity and continued with 20 mg the day after.
1/14: Unresponsive to all above.
* (effectively 8/14) 1 stopped due to side effects.

Article 36

Yes: NSAID, diclofenac 25 mg twice a day, according to article 3. Oral administration of celecoxib 100 mg once a day was as effective as diclofenac. Relief: symptoms disappeared completely.

No: Antihistamines and herbal medicines.

Article 37

Yes: Celecoxib 200 mg, which is an NSAID, was administered daily just after ejaculation. Immediately after the intake of the drug, headache and muscle pain were relieved, and the patient was able to ejaculate 3 days per week. However, general fatigue did not improve. In addition to NSAIDs, 250 mg of testosterone enanthate was administered as a TRT every 2 weeks because the patient’s serum free testosterone level was lower than 70% of the average value in young adult men. His general fatigue significantly improved, and morning erection has been achieved every day. Therefore, he can ejaculate everyday by masturbation. The interval of drug administration was changed from 2 to 4 weeks. However, no recurrence of symptoms was observed. TRT was switched to testosterone ointment (Glowmin®; Daito Pharma, Tokyo, Japan), and his symptoms continually improved.

No: Antihistamines

Article 38

Patient 1

Yes: Sertraline 100 mg a day for 6 weeks. Relief: Improved anxiety, diminished sexual desire. Post-orgasm symptoms have reduced in severity by 50% and now last 2–3 days (was 5 days).

Patient 2

Yes: Doxycycline (an antibiotic) for 6 weeks. He feels there may be marginal improvement in his symptoms having
orgasmed once in that period.

No: High-dose levocetirizine (an antihistamine), nicotinamide and progesterone.

Article 39

Sample size: 302 men. Just more than half (154, 51%) of respondents have sought treatment from a professional for their POIS symptoms. Treatment efficacy, as defined as sustained subjective improvement of symptoms, varied with 44 of 90 (50%) respondents reporting improvement in symptoms with antihistamine use, 19 of 25 (76%) with niacin, 18 of 47 (38%) with selective serotonin reuptake inhibitors, 17 of 23 (74%) with nonsteroidal anti-inflammatory medications, and 9 of 33 (27%) with benzodiazepines.

Editor section

Reminders:
Article 24, 29 contains recommendations, scrap article 19 recommendations? Make separate section?, scrap question marks? Formatting needs an overhaul. Check T#. Fix size, table codes. Article 26: find [C], made a comment about article 5? Ask doctor about updated treatment protocol. Check syntax errors and check order of med intake. Could add a note about recommendations. Could add links to treatment compilations of related conditions. Reduce amount of text for some articles, bloating.

Suggestions:
annonny2:
"Thanks, might be worth grouping the Yes and nos"
« Last Edit: March 24, 2021, 04:27:40 PM by Muon »

Muon

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Re: POIS paper treatment summary
« Reply #4 on: November 04, 2020, 04:11:49 AM »
Reserved 4

Muon

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Re: POIS paper treatment summary
« Reply #5 on: November 04, 2020, 04:18:50 AM »
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Muon

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Re: POIS paper treatment summary
« Reply #6 on: November 04, 2020, 04:28:06 AM »
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Muon

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Re: POIS paper treatment summary
« Reply #7 on: November 04, 2020, 04:34:21 AM »
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Muon

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Re: POIS paper treatment summary
« Reply #8 on: November 04, 2020, 04:40:02 AM »
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Muon

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Re: POIS paper treatment summary
« Reply #9 on: November 04, 2020, 04:46:13 AM »
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Muon

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Re: POIS paper treatment summary
« Reply #10 on: November 04, 2020, 04:50:09 AM »
Reserved 10
« Last Edit: November 22, 2020, 04:00:04 PM by Muon »

Muon

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Re: POIS paper treatment summary
« Reply #11 on: November 22, 2020, 03:59:45 PM »
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Muon

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Re: POIS paper treatment summary
« Reply #12 on: November 22, 2020, 04:04:46 PM »
Okay...Let's post links to threads where you explain your method of relief for POIS. I will incorporate them under the 'Method of POIS relief central hub' header. Also post links from other members please. See it as a central hub. Just place them in the comments. Help me out please.
« Last Edit: November 22, 2020, 07:48:27 PM by Muon »

ThisType

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Re: POIS paper treatment summary
« Reply #13 on: November 23, 2020, 08:55:42 PM »
Hi Muon,
Thanks for pulling this together - a link to the latest on my end
https://poiscenter.com/forums/index.php?topic=2486.0

Rough cause for me appears to be genetic (see posts related to CMS)
Thanks!
TT

Muon

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Re: POIS paper treatment summary
« Reply #14 on: November 24, 2020, 07:20:23 AM »
Ok added, much appreciated ThisType. If anyone wants to go through the 1000+ pages on Nakedscientist looking for cases describing treatment methods then be my guest, I'm not going to do that. Or perhaps some do remember POISers describing treatment/relief methods on certain pages, in that case dump the links here plz.

Hopeoneday

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Re: POIS paper treatment summary
« Reply #15 on: November 25, 2020, 05:21:14 PM »
Nice work.
Dr-pois.

Muon

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Re: POIS paper treatment summary
« Reply #16 on: November 27, 2020, 09:15:57 AM »
Vagus Nerve as Modulator of the Brain–Gut Axis in Psychiatric and Inflammatory Disorders

"In addition, hypnotherapy, which increases vagal tone (213), has been effective in the treatment of IBD"

Jacob (Psychotherapy, hypnotherapy, holotrophic breathing, meditation)

Hmm hypnotherapy could be something to get my breathing frequency under control...taking a note here.

Dumping this here:
Pyridostigmine Protects Against Diabetic Cardiomyopathy by Regulating Gut Microbiota and Branched-Chain Amino Acid Catabolism to Attenuate Mitochondria Dysfunction

I wonder whether cutting the vagus nerve solves POIS instantly...

Who were the POISers that used vagus nerve stimulators with partial succes? I can add those to the list. Also post any treatment for vagus nerve dysfunction/modulation if you see any.
« Last Edit: November 27, 2020, 10:53:44 AM by Muon »

Muon

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Re: POIS paper treatment summary
« Reply #17 on: December 08, 2020, 01:19:19 PM »
Placed CFS community recovery stories under the 'other conditions'---> CFS--->recovery stories. More ideas.
List of ME/CFS Recovery and Improvement Stories

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Re: POIS paper treatment summary
« Reply #18 on: December 09, 2020, 12:00:27 PM »

Muon

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Re: POIS paper treatment summary
« Reply #19 on: December 12, 2020, 01:55:21 PM »
Dumping this here.

"different things work for different people, and recovery is often a matter of trial, error, and blind luck." Ref

https://forums.phoenixrising.me/threads/dr-jay-goldsteins-rapid-remission-me-cfs-treatments.34516/

"I took a 10 mg tablet of isosorbide dinitrate (Isordil)"

https://forums.phoenixrising.me/threads/betrayal-by-the-brain-jay-goldstein-md-has-anyone-read.20051/page-7

"I was a patient of Dr. Goldstein in 1998-1999. I tried at least two dozen pharmaceuticals he prescribed. My symptoms resolved completely for 6 weeks on Nimodipine but I developed a tolerance and it stopped working. A few other drugs resolved or reduced symptoms for as long as a week but they all stopped working."

http://www.cfstreatmentguide.com/dr-jay-goldstein-a-z-treatments.html

https://www.ncf-net.org/forum/jay.htm

Books:

Betrayal by the brain: The Neurologic Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome, and Related Neural Network Disorders (1996)

Tuning the Brain: Principles and Practice of Neurosomatic Medicine (2004)

Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition, 1st edition free here (1997)

Q: "Is there anywhere in his books where Goldstein provides a flow diagram to follow, for systematically testing out the effects on a patient of the various drugs he recommends for ME/CFS?"

A: "Yes; at the back of Tuning the Brain, Dr. Goldstein provides such a chart. It contains far fewer than the total of 140 drugs, but it does contain a few dozen of the most common ones. All the drugs he uses are listed in the pages after this chart. They're merely listed in alphabetical order, but after a while, you get a feel for how the whole process works, and the chart is not so important. Also, it's not 100% correct, as Dr. Goldstein acknowledges; the workings of the human brain are far too complex to be summarized in a simple chart."

Q: "is the book Tuning the Brain that you are reading more useful than the book Betrayal by the Brain, in terms of an ME/CFS patient trying to follow Goldstein's treatment protocol? Or are both books similar?"

A: "The two books really form a single conceptual volume. Both are necessary to understand his work. Receptor profiling, which is what replaced the list of 23 medicines and what allowed him to know which of his 140 medicines were most likely to help a patient, is explained only in Tuning the Brain. This book is about twice the size of Betrayal by the Brain, and I find that I use it a lot more in my treatment based on this protocol"

Goldstein's Decision Tree (2004)

Goldstein's Decision Tree

How to use Goldstein's Decision Tree

Receptor Profiling as a Guide to Treatment


Copying some in case sites are down:

A Typical Neurosomatic New Patient Treatment Protocol (1996 protocol from 'Betrayal')

The purpose of his treatments was essentially to reset the brain, specifically the limbic system, via pathways going to the brain.
Typically, when Dr. Goldstein saw new patients, he would test them sequentially with minute quantities of many psychoactive drugs in order to 1) identify the source of the problem, and 2) establish which drugs would be most effective. This method allowed Dr. Goldstein to assess the patient rapidly, and at minimal cost. Dr. Goldstein halted sequential trials when the patient was “virtually asymptomatic.” Dr. Goldstein claimed that using this protocol most patients were dramatically improved in one or two office visits.

Agents tried sequentially (Start at top and work your way down)

Drug | Time to Onset of Action | Duration of Action

(1) Naphazoline HCL 0.1% eye drops | 2 - 3 seconds | 3 - 6 hours
(2) Nitroglycerin 0.04 mg sublingual | 2 - 3 minutes | 3 - 6 hours
(3) Nimodipine 30 mg oral | 20 - 40 minutes | 4 - 8 hours (Click here for overview of trials in ME)
(4) Gabapentin 100 to 800 mg oral | 30 minutes | 8 hours
(5) Baclofen 10 mg | 30 minutes | 8 hours
(6) Oxytocin 5 to 10 U intramuscular, or twice daily;
OR: Syntocinon 1 or 2 puffs three times a day | 15 minutes - 72 hrs | 12 - 24 hours
(7) Pyridostigmine 30 to 60 mg oral | 30 minutes | 4 - 6 hours
(8] Hydralazine 10 to 25 mg oral | 30 - 45 minutes | 6 - 12 hours
(9) Mexiletine 150 mg oral | 30 - 45 minutes | 6 - 8 hours
(10) Tacrine 10 mg | 30 minutes | 4 - 6 hours
(11) Risperidone 0.25 to 0.5 mg | 45 - 60 minutes | 8 - 12 hours
(12) Pindolol 5 mg twice a day | 15 minutes - 7 days | 12 hours
(13) Lamotrigine 25 to 50 mg four times a day | 30 - 45 minutes | 24 hours
(14) Sumatriptan 3 - 6 mg subcutaneous | 15 - 30 minutes | 16 hours
(15) Ranitidine 150 mg twice a day | 1 hour - 1 week | 12 - 24 hours
(16) Doxepin HCL elixir 2 - 20 mg at bedtime | 1 hour | variable
(17) Sertraline 25 to 50 mg every day before noon;
OR: Paroxetine 10 to 20 mg every day before noon | 1 hour - 8 weeks | 1 - 2 days
(18) Bupropion 100 mg three times a day | 30 minutes - 8 weeks | 8 - 24 hours
(19) Nefazodone 100 to 300 mg twice a day | 2 - 8 weeks | 24 hours
(20) Venlafaxine 37.5 to 75 mg twice a day | 1 - 4 weeks | 24 hours
(21) Glycine powder 0.4 grams per Kg of body weight daily in juice;
OR: Cycloserine 15 to 20 mg four times a day | 1 hour | 24 hours
(22) Felbamate 400 mg | 30 minutes | 6 - 8 hours
(23) Lidocaine 200 to 300 mg

A-Z Treatments (Comments are by Dr. Goldstein)

Acetazolamide (Diamox): This drug is a carbonic anhydrase (CA) inhibitor which is routinely used as a cerebral vasodilator in nuclear medicine. Patients will occasionally have a reduction in symptomatology with acetazolamide. Acetazolamide 250 mg eliminated the pain of a 41-year-old female patient with post-traumatic fibromyalgia, helped her feel very relaxed, and markedly reduced her other symptoms.

Acetyl-L-Carnitine: In theory, a good drug. It should work as an acetyl group donor to increase acetylcholine, and the carnitine has already been shown to be effective in a double-blind experiment by the Drs. Plioplys. Acetyl-L-carnitine also increases the levels of nerve growth factor (which are four times normal in the spinal fluid of FMS patients) and increases other transmitters like adenosine and ATP. In practice, a semi-dud.

Adderall: An amphetamine combination that a few patients find more energizing than plain dexedrine. Only about a third of CFS patients have a good response to stimulants, which act by squeezing dopamine (DA) and norepiniphrine (NE) out of neurons and glia. If these transmitters are much too low already, giving stimulants will further lower the signal-to-noise ratio and increase symptoms.

Amantadine: A weak NMDA antagonist. Helpful for a few patients. Doses higher than the PDR recommends may be more effective, but there is an increased risk of adverse drug reactions when exceeding this dose. Israelis have given 100 mg IV with good results in neurogenic pain. IV amantadine is not available in the USA. Amantadine, ketamine, dextromethorphan, and a new MNDA antagonist, memantine, can be used in trigger point injections as well as gel applications for local pain.

Ambien: The best sleeping pill. Does not cause dependence except in unusual circumstances.

Aricept: A cholinesterase inhibitor marketed for Alzheimer's disease. Has the advantage of once-a-day dosing and no requirement for liver function test. Does not work as well as Cognex, perhaps because it is not a potassium channel blocker. Cognex has several effects on neurotransmitters relevant to CFS/FMS.

Ascorbic Acid (Vitamin C): Recent research into the role of ascorbic acid in the brain (which has the highest concentrations of this substance in the entire body) has shown that this agent may be beneficial in certain patients with CFS. Ascorbate has been found to be neuroprotective, particularly by inhibiting the redox site of the NMDA receptor and diminishing calcium influx. Trials of high-dose oral ascorbic acid have been generally disappointing. Administration of ascorbic acid is done via IV doses of 25 to 50 grams diluted in half-normal saline of Ringer's lactate over a period of about 90 minutes. Adding magnesium sulfate is recommended because ascorbic acid can cause magnesium shifts from extracellular to intracellular compartments. It is beneficial to add 500 mg of calcium gluconate since ascorbic acid is a calcium chelator and could possibly lower serum calcium. Responders to IV ascorbic acid generally feel considerably better in most respects the day after treatment.

Baclofen: A greatly under used medication. A GABA-B agonist with few ADRs, it has an immediate onset of action and is still in my top 10.

Vitamin B12: Besides being vital to transmethylation (which helps to synthesize NE), B12 2g. orally in AM decreases inappropriate daytime melatonin secretion, thereby aiding in the treatment of the delayed sleep-wake cycle many CFS patients experience. Very large doses (10 g) may aid transmethylation.

BuSpar: The ideal anxiolytic in all respects except efficacy. Best used as an SSRI augmentation agent, especially combined with Visen (not generic Pindolol). Augmentation strategies, of which there are many, do not work nearly as well in CFS as they do in major depression disorder.

Clonidine: Another greatly underused drug. Can be good for central pain, ADD, anxiety. Helps all symptoms in some patients. Eliminates nightmares. Safe and cheap. Comes in a patch that lasts all day. Better than Zanaflex, another alpha-2 agonist. Tolerance and depression have not been much of a problem. Adverse drug reactions to clonidine can be reversed by yohimbine, an alpha-2 antagonist. Guanfacine (Tenex) is a less sedating alpha-2 antagonist with a 24-hour duration of action.

Dexedrine: An effective stimulant. Makes some patients calm also. May synergize with Ultram. Desoxyn may be better but has neurotoxicity. Many patients like Adderall more.

Depakote: In the CFS population its only value is in migraine prophylaxis, for which it is excellent.

Dilantin: Useless in every CFS patient I have treated with it.

DHEA: Theoretically excellent, it is a neurosteroid which is a GABA antagonist, not necessarily a good thing for some patients. Pregnenolone should be the best neurosteroid (low in PMS).

Felbamate (Felbatol): Not used much because of requirement for hematologic and liver function test monitoring. Should be tried in every treatment-resistant patient. May work when nothing else does, especially for intractable headaches. It may cause headaches, however. There's no free lunch.

Gabapentin (Neurontin): Gabapentin, an antiepileptic drug with a novel mechanism of action, has become one of my five favorite medications (the others are oxytocin, nimopidine, baclofen, and intravenous lidocaine) to treat neurosomatic disorders.

Gabitril: The only GABA reuptake inhibitor (like Prozac is a serotonin reuptake inhibitor). Very effective and very safe if you follow PDR dosing suggestions. Increase the dose too rapidly and the patient may get delirious or manic. Effects are reversible with flumazenil if necessary.

Gingko Biloba: Useful only for sexual dysfunction induced by serotonin reuptake inhibitors (SRIs). Inhibits platelet aggregation. Rare reports of brain hemorrhage. This adverse reaction raises the risk/benefit ratio.

Ginseng Saponins: Works a little like nitroglycerin, which converts to nitric oxide. Increases energy slightly.

Gotu Kola: A mild stimulant with no apparent adverse reactions.

Honey Bee Venom: As with any "natural product," bee venom has a multitude of ingredients. Patients should be skin tested for bee venom allergy first. Major constituents from my point of view are phospholipase A2 (PLA2), which makes arachidonic acid, the precursor to eicosanoids (prostaglandins, leukotrienes, etc.), dopamine and NE. When it works, the patient often feels like he has been injected with rocket fuel. Effects last about one to two weeks. Has made three patients worse, two of whom were father and daughter. Patients should have an Epi-Pen (if available) and an antihistamine with them at all times. Plaquenil antagonizes PLA2. Arachidonic acid combines with effianolamine in the brain to make anandamide, an endogenous cannabinoid (like marijuana).

H2 Receptor Antagonists: The first treatments I developed for CFS were cimetidine and ranitidine. I based this therapy on my successful experience treating acute infectious mononucleosis with cimetidine. When a CFS patient responds to an H2 antagonist (I use ranitidine), the onset of action is similar to that seen in acute infectious mononucleosis, i.e. one or two days at a dose of 150 mg b.i.d. Usually all symptoms are ameliorated. Some patients are unable to take any does of ranitidine because it makes them “hyper.”


Hydergine: The most underused effective medication in the PDR. Extremely safe. A dopamine and acetylcholine agonist. There is nothing else like it. Other dopamine agonists seem to be restricted in action to the nigrostriatal dopaminergic tract, which is not important in CFS symptoms. Not the case with Hydergine, which is quite helpful for alertness, especially in those sedated by Baclofen. As with most medications listed, it can sometimes help all symptoms.

Oxytocin: Oxytocin has a wide range of behavioral effects. Oxytocin neurons project to many areas of the limbic system, as well as to the frontal cortex. Oxytocin is involved in maternal behavior, female and male sexual behavior, feeding, social behavior, and memory. It also has effects on cardiovascular, autonomic, and thermoregulatory processes. Approximately one-fifth of my patients have a good response to IM oxytocin after failing to respond to numerous oral agents. Cognitive clarity is the most responsive symptom, with fibromyalgia and pain being second.

Kava-Kava: One of the two best "natural products" for CFS. May take up to eight weeks to have an effect. No adverse drug reactions.

Ketamine: The best single agent for CFS/FMS and all other neurosomatic disorders. Known best as an NMDA receptor antagonist (the NMDA receptor is one of the several receptors for the excitatory amino acid glutamate), it increases dopamine in the limbic system, a very important objective in CFS. I administer it by slow intravenous infusion or in PLO gel for transdermal (through the skin) absorption. The intravenous route is more effective, but transdermal application can be done daily, and if effective, can obviate peaks and valleys and need for IVs. I have seen no cases of Ketamine abuse among my patients. Ketamine is one component of my "resurrection cocktail," for patients who have been bedridden for more than a year and whom I may only see once. The others are IV ascorbate, IV lidocaine, IV thyrotropin- releasing hormone (which raises all biogenic amines plus acetylcholine), Nimotop, and Neurontin (still the most effective oral agent but is being pushed by Tasmar). I am doing trials with Ketamine eyedrops.

Klonopin: The benzodiazepine to use if you are going to use one. Affects neurosteroid biosynthesis.

Kutapressin: I don't know how this drug works, but some patients have immediate symptomatic improvement after 2 ml IM. I don't usually prescribe it otherwise since there are so many immediate-acting options. It does increase bradykinin, and adverse drug reactions may be treated with drugs like Vasotec (ACE inhibitors).

Lamictal: One of the new anti-epileptic drugs. All of them increase GABA, and most of them are N-methyl-d-aspartate (NMDA) antagonists. Works immediately. The main adverse drug reaction is a rash, which can be minimized by gradual dosage escalations. Affects all symptoms. 50-100 mg of Larnictal and 800-1200 mg of Neurontin have rendered euthymic in 30 minutes every patient with acute manic excitement I have treated. Zyprexa and Rilutek could be added to this cocktail if necessary. Lamictal is also an antidepressant and may also work over four weeks or so.

IV lidocaine: In addition to its actions mentioned in Betrayal by the Brain, it also acts as an NMDA antagonist. It is the second best treatment. I have given it about a thousand times without a serious adverse drug reaction. Patients have come with great difficulty from other states or countries with the common lament of "If you can't help me I'm going to kill myself' (I hear this about twice a week). At least two patients, achieving complete symptomatic relief with IV lidocaine, returned home and could not find a physician or nursing service to administer it. Since they could not move to southern California, they were again bedridden and had to crawl to the bathroom. Not able to live this way any longer, they committed suicide, a worse outcome than the lidocaine toxicity, which never happens. Many physicians will not prescribe any of the medications I use, even if they help their patients a lot. Some medium-sized cities have not one physician who will care for CFS patients. I must treat them from afar, a hazardous practice medicolegally.

Marinol: Marinol-deta-9-tetrahydrocannobinol is a medication I use rarely, because of the medicolegal implications. Among other things, it is a dopamine agonist in the limbic system (at the nucleus accumbens, a key structure in CFS), but an indirect one. It is also a calcium channel blocker. A few patients get total symptomatic relief with Marinol when one hundred other medications have failed. One such patient is applying for disability only because she cannot afford it. It is one of the last and best options for treating the diffuse pain of FMS, and is good for atypical facial pain. In five years it should be used routinely in many situations.

Methadone: Another drug I don't use very often, and for the same reason, although California has passed a law that physicians cannot be prosecuted for using opioids responsibly to treat chronic pain. Thus, it is less risky for me. Physicians in some states are afraid to prescribe it. It is the opioid of choice. Besides being an agonist at the mu opioid receptor, it is an NMDA receptor antagonist (like Ketamine), and blocks the serotonin transporter (like SRIs). I described its use as an antidepressant about 15 years ago in the medical literature. It is very cheap, does not produce much opioid euphoria, and often ameliorates all neurosomatic symptoms.

Nicotine Patch or Gum: I have been prescribing nicotine in these forms for a long time. Nicotine is analgesic, probably by virtue of its stimulating secretion of dopamine and norepinephrine. It binds to the nicotinic cholinergic receptor and can also have profound effects on mood, energy, and cognition. An occasional patient will have worsening of symptoms with nicotine.

Papaverine SA: Marketed many years ago as a vasodilator, this medication will probably be discontinued shortly. It is the only drug available that inhibits adenylate cyclase, thereby increasing cyclic AMP, which you may recall from biology class as being pretty important. There is an experimental antidepressant, rolipram, which has a similar mode of action. It preferentially affects energy, alertness, and cognition, and has very few adverse drug reactions. It is a top-10 drug (cheap, too).

Pentazocine (Talwin):Occasionally, an extremely treatment-resistant individual has felt much better after taking pentazocine plus naloxone (Talwin-Nx).

Spironolactone (Aldactone): Spironolactone (a mineralocorticoid receptor antagonist) has been used for several years to treat premenstrual syndrome. My experience with spironolactone is that it helps only occasionally, but the effect is rapid (30 minutes or so), and thus can be assessed while the patient is in the office.

St. John's Wort (Hypericum): The other good "natural" remedy for CFS.

Tasmar (Tolcapone): Neither an exotic location on the Silk Road nor a Mafia-run turnpike in Chicago, Tasmar is a unique agent. It inhibits the enzyme catechol-ortho-methyltransferase (COMT), one of the two enzymes (monomine oxidase is the other) that metabolizes dopamine and norepinephrine. Tasmar degrades them in the synaptic cleft. I have been waiting for this drug for years. It is marketed for Parkinson's disease, and most physicians have not heard of it yet. It can work as monotherapy, either acutely or after four weeks or so. It may be more effective (immediately) when combined with a dopamine agonist such as Requip (quinpirole) or a reversible inhibitor of monoamine oxidase (RIMA) such as meclobemide, which due to the wisdom of the FDA is available in every other industrialized country in the world but the USA. The package insert advises against combining it with irreversible MAOIs such as Nardil and Pamate, so I have not done so. This combination would leave reuptake as the only mechanism to terminate the post-synaptic effect of catecholamines, although rats do quite well on the two drugs. An accountant, unable to work for three years, is back to work now on meclobemide and Tasmar. Adding Sinemet may enhance the action of Tasmar, since it is metabolized to dopamine. Sinemet may be given instead of Requip or Mirapex, or concomitantly. Requip and Mirapex are useful in that they are D3 agonists also. The D3 receptor is located primarily in the limbic system. Since COMT is a methyl group acceptor, it may work better by combining it with S-adenosylmethionine (SAMe), a methyl group donor with no adverse drug reactions, effective in FMS and depression. SAMe is available in many other countries, and certain buyer's clubs will supply you with it. Tasmar inactivates COMT, allowing SAMe to transfer methyl groups to precursors so that more norepinephrine can he formed. This process is termed "transmethylation" and is too complicated to discuss further in this column. Interested readers may consult the work of John R. Sinythies and R.J. Baldessarini and go from there.

Topamax: Another new AED, Topamax has a little more affinity for the ANWA glutamate receptor, as well as the NMDA receptor. It has very few adverse drug reactions, and when it works, is quite energizing. Agonists at the third major class of glutamate receptor, the "metabotropic," of which there are of course various subtypes, are being developed as anxiolytics.

Viagra: I don't have enough money to buy stock in anything, but buying Pfizer a few months ago would have been almost as good as buying Microsoft in 1985. This drug works by inhibiting type 5 phosphodiesterase, one of the six known enzymes to degrade cyclic GMP (as important as cyclic AMP, but maybe not covered in biology class). Type 5 is supposed to be specific for the corpus cavemosurn of the penis and probably the clitoris as well. It is not all that specific, though, at least in my patients, who frequently experience flushing and headache. When Viagra works in CFS/FMS, patients experience a reduction in all symptoms. One patient whom I have been treating for 10 years had not responded to one medication until she took Viagra, whereupon she felt almost normal. Nitroglycerin and hydralazine, which stimulate cyclic GMP by different mechanisms, had not helped her.

Zyprexa: One of the new "atypical neuroleptics," with Risperdal and Seroquel, Zyprexa can he used as a sleeping aid, antidepressant, anxiolytic, and of special relevance to my practice, is probably the most effective treatment for borderline personality disorder. You can look up the symptoms in the DSM-IV, personality disorder.
« Last Edit: January 01, 2021, 07:10:05 PM by Muon »