Author Topic: Muon's Case  (Read 1214 times)

Muon

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Muon's Case
« on: October 15, 2017, 03:06:21 PM »
I will first start showing privately funded test results regarding POIS(?) and will update this post along the way.

My data:
https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0

My brother's data:
https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0

(I did use free PDF eraser software to delete private info so there is a watermark in the upperleft corner, please respect my privacy)
The only parameters my brother has tested before and after an orgasm were IL-8 and IgE, but these show no change.
 
Diagnoses:
  • Chronic Fatigue Syndrome (Questionnaire+symptoms)
  • Bell's Palsy (left side, EMG)
  • Post Orgasmic Illness Syndrome (Subcutane skin prick+symptoms)
  • Postural Orthostatic Tachycardia Syndrome (>30BPM between supine and standing)
  • A possible Intestinal Bacterial Overgrowth and Lactose intolerance (positive lactose hydrogen breath test)
  • Structural Kyphosis (Cobb Angle = 70 degrees by scans)
The only diagnose that isn't based on physical data is CFS.

Peculiarities/miscellaneous:
  • Decreased Vitamin D levels (range:10-20, multiple times)
  • Decreased Iron levels (one time when I was 7 years old, don't have the value)
  • Decreased Sodium levels (Once, happened with onset of heavy POTS symptoms)
  • Elevated ALAT (multiple times)
  • Premature Ejaculation
  • 3 Positive subcutane skin pricks with semen of 3 different men (same reaction as my own samples)
  • Calcium hydrogen phosphate stones in stool (analyzed it at local hospital)
  • White bumps on shoulders, inside of mouth and back
  • (past)Fungal infection inside of mouth (2 times), Local fungal skin infections at chest, penis, navel and continuous (present day) toenail infections
  • Gastroscopy: Food from 9 hours ago was still in the stomach and Hyperaemia at the Z-axis. Conclusion was decreased corpus motility
Things to do:

POIS Symptoms
  • Extreem fatigue
  • A tingling/burning sensation, it leans more towards tingling than burning. It's difficult to describe this symptom. I have the idea that most tissue being affected by this symptom is located in a layer close to the skin
  • Dark circles around eyes
  • Muscle ache
  • Joint pain
  • Exercise/motion intolerance
  • Heavy body
  • Feeling cold/warm, feeling cold happens far more often than warm
  • Decreased endurance, especially with the duration of standing and sitting straight
  • Sensitive teeth
  • Stinging pain at liver area
  • Yellowing of facial skin
  • Pale skin and facial skin becomes like a babyskin
  • Decreased vocabulary
  • Articulation problems
  • Poor concentration
  • Grammar problems (constructing sentences suddenly becomes a puzzle)
  • Short term memory loss (temporary)
  • Motivation in general is being lowered and often completely wiped out
  • I become someone without personality
  • Accelerated Bowel movement, loose stools and sometimes diarrhea
  • It amplifies my food intolerance/sensitivity
  • Decreased digestion
  • A sense of being full (digestion)
  • Fasciculations
  • Itching
  • Soar Throat
  • Decreased accuracy of handwriting ,also problems with controlling videogames like aiming in FPS
  • Faster spreading of local fungal skin infection at feet in POIS
(the above list is not complete, can also add frequency and relative intensity)
Chronological order of events

2 days/1985: Cardiac arrest while my mother was breastfeeding me.
Age 7/1992: Iron deficiency. I looked very pale, had dark rings around my eyes and was thin.
Age 12/1997(age 10 or 12): My body failed regulating my breathing pattern, I had to do this manually which led to hyperventilaton. This happened on a very hot day.
Age 14/1999: Started to masturbate in my late 14's
Age 15/2000: Started to get really tired and I could not be in school on time early in the morning. There were also strange events like an erection that was not getting soft again and had no control over it. One time I was getting a burning sensation in my glans penis while I had a semi erection and was peeing.
Age 16/2001: I was questioning myself if there was something wrong immediately after a particular orgasm at one situation. I didn't take it that serious and shrugged it off. I was stupid not observing my general well-being the days after that orgasm.
Age 17/2002: I was playing a soccer match under hot weather conditions and felt like I didn't receive enough oxygen resulting in very deep and slow inhalations (blood pooling, typical POTS symptom). The same thing happened a few times during summer time on hot days in school where maintaining posture was more difficult than usual and displayed the same behaviour as the situation when I had that soccer match namely very deep and slow inhalations (not to be confused with hyperventilation). People sitting next to me were quite irritated by this breathing pattern.
Age 18/2004 Facial paralysis left side when I woke up in the morning after I visited someone who was celebrating her birthday. I drank 3 bottles of beer that night (I rarely drank alcohol at all, was never a drinker) which was a lot for me and also ate a lot of peanuts and remembered I was tired. This was a point where more symptoms starting to appear, it felt like an acceleration. Around this time I also did not get enough energy by meals even when I ate more because I was more physically active with sports. I could not get enough energy by eating.
Age 19 and up: Don't know the exact age and order, have to look it up. Oral fungal infection, tennis/golf elbow, heavy nerve pain at the inside of arms for one year, after that I got capal tunnel-like symptoms for a year, food intolerances went gradually worse in particular fruits.
Age 24/2009 POIS symptoms were so extreme that it became clear to me that ejaculation was the culprit. Searched the internet for sickness after orgasm, made an appointment with Prof. Dr. Waldinger, did get diagnosed with POIS and started hyposensitization treatment in early 2010.
Needs editing, to be continued Reminder: I can remember clearly I had food sensitivities around  8/9 years of age. Have to look it up if I had them before the age of 7. Liesproblemen vergeten.

General Symptoms

List of triggers

Synergy of triggers

Food

Symptoms
Examples

Heat

POTS Symtoms

Info for doctors from a doctor's point of view

Symptom dynamics/situations

POIS
Before desensitization:
Phase1 (Build up phase): POIS sets in immediately and builds up gradually. Sometimes the starting intensity is so low and speed of intensity build up (slope) slow that you only will notice it after some time (in some instances this could mean 30 min for example or in rare cases a few hours).

Phase2 (constant intensity phase): After approximately 24 hours symptom intensity reaches its maximum. It stays a bit lower by a small margin than the max and constant from the ~24 hour mark up to day 4.

Phase3 (Recovery phase): After day 4 symptom intensity will decrease. It feels like flipping a switch at the end of day 4. This recovery phase can take up 1-3 days. After that I still have POIS symptoms, this is like a constant offset.
!Perhaps I need to draw a graph to make it more clear
Add reminder: Dynamics of Pre-ejaculate release without ejaculation and combination of pre-ejaculate phase with orgasm.

Factors contributing to symptom reduction

POIS
  • 5 year long desensitization treatment 2010-2015 (permanent improvement, the amount varies with type of symptom. Fatigue is by far the most improved symptom, perhaps 80% reduction. For other symptoms it's harder to estimate how much they have been reduced, for most of them I think maybe around 50% but this is a very rough estimate). My POIS was quite extreme
  • A long and good night of sleep
  • Cold, especially Sub-zero environmental temperatures (perhaps have to put details about this one somewhere else)
  • Taurine (minor effect, 45 min before Orgasm ~1g)
  • Antihistamines (minor effect)
POTS
  • Intens (heavy weights) body building exercises (most of them in flat or inclined position). Short powerful movements, almost explosive with Reps between 3-5. The trick is you need to induce a pump. Need to add more details
  • Strong beta blocker (need to look it up what type and dose)
  • Low Carbohydrate diet
  • Cold (heat exacerbates it)
  • Laying flat (even the slightest head tilt can worsen symptoms)
  • Salt (water without salt can exacerbate symptoms)
Food reactions
  • Heating food by high temperatures. Cooking food in boiling water doesn't do much. Cooking in pans, ovens or fryers leads to significantly less food reactions. The thickness of food is relevant as well. For example I'm more tolerant to thin sliced potatoes than thicker ones, some semi raw regions inside the centre of ticker potatoes can still trigger reactions
General Symptoms
  • Eating less in general
  • Eating less sugar
  • Skipping grains, nuts & seeds, diary for improvement of stool density
  • Cold temperatures
  • Oral intake of Liquid Hydrogen Peroxide solution
  • Avoiding triggers
More to add and need to go more into dynamics

Family members

Family members on my mother's side show similar symptoms as I do. All the females who got health problems felt better during their pregnancies and felt worse during their menstrual cycle. My grandma actually looked forward to her pregnancy. My mother has 3 children, my aunt got one and my grandma has 4. They all felt physically better for every single pregnancy.

Mother:
Osteoporosis
Carpal tunnel syndrome and delivering squeezing power with hand is difficult
Pollen induced hayfever (elevated IgE)
Easy bruising
Unexplained areas of the skin that can turn red
High cholesterol levels
Blood pressure problems
Calves feel heavy
Varicose veins in legs
Red eyes
there is more I have to add it later

Commentary and thoughts on symptoms

Ideas/papers/suggestions

POIS

Mast cell activation cascade
Hyperpermeability/barrier dysfunction in genitourinary system
Th2 response

POTS

Mast cell activation disorder:
Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome (P1.277)
http://n.neurology.org/content/84/14_Supplement/P1.277

''Triggering events include long-term standing, exercise, premenstrual cycle, meals, and sexual intercourse''
Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders
http://hyper.ahajournals.org/content/45/3/385.short

A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome
https://www.jacionline.org/article/S0091-6749(14)02927-3/abstract

Autoimmunity/Viral illness
Autoimmune Basis for Postural Tachycardia Syndrome
http://jaha.ahajournals.org/content/3/1/e000755.full

HPV vaccines:
Human Papillomavirus Vaccine and Postural Orthostatic Tachycardia Syndrome: A Review of Current Literature.
https://www.ncbi.nlm.nih.gov/pubmed/28689455

SIBO and POTS?
Successful treatment of postural orthostatic tachycardia and mast cell activation syndromes using naltrexone, immunoglobulin and antibiotic treatment
http://casereports.bmj.com/content/2018/bcr-2017-221405.long

Vascular Endothelial Dysfunction (abnormal sheer stress/NO response to acetylcholine & heat)
Cutaneous neuronal nitric oxide is specifically decreased in postural tachycardia syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511496/

Decreased Microvascular Nitric Oxide?Dependent Vasodilation in Postural Tachycardia Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4511487/

Endothelial NO Synthase Polymorphisms and Postural Tachycardia Syndrome
http://hyper.ahajournals.org/content/46/5/1103

Relation between Endothelial dysfunction and autonomic nervous system dysfunction
The Relationship between Vascular Function and the Autonomic Nervous System
https://www.jstage.jst.go.jp/article/avd/7/2/7_ra.14-00048/_article/-char/ja/

C-fiber involvement:
Small-fiber neuropathy with cardiac denervation in postural tachycardia syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/24647968

Bell's Palsy

Immunological concept/mast cell activation/hypersensitivity:
Immunological Concept for Bell's Palsy
http://journals.sagepub.com/doi/abs/10.1177/000348947708600304

An immunological concept for bell's palsy ? Experimental study**
https://onlinelibrary.wiley.com/doi/abs/10.1288/00005537-197209000-00002

Infection theory:
Frequent detection of Mycoplasma pneumoniae in Bell's palsy.
https://www.ncbi.nlm.nih.gov/pubmed/14576947

Hormonal metabolic changes?:
Familial juvenile onset of Bell?s palsy
https://link.springer.com/article/10.1007/BF02467367

Impairment of microcirculation of the facial nerves:
https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/623589

http://europepmc.org/abstract/med/7904659

Elevated Serum Interferon Levels in Patients With Bell's Palsy
https://www.ncbi.nlm.nih.gov/pubmed/2491786

CFS

Disturbance to cholinergic pathways/vascular endothelial dysfunction
Prolonged acetylcholine‐induced vasodilatation in the peripheral microcirculation of patients with chronic fatigue syndrome
https://onlinelibrary.wiley.com/doi/full/10.1046/j.1475-097X.2003.00511.x

Premature Ejaculation

''Our study indicates that premature ejaculation is significantly related with a higher level of seminal NO.''
Relevance of seminal plasma nitric oxide levels and the efficacy of SSRI treatment on lifelong premature ejaculation
https://onlinelibrary.wiley.com/doi/pdf/10.1111/and.12210

''From these results it can be concluded that PE occurs because decreased levels of serotonin. Decreased levels of serotonin are associated with increased levels of IFN-g.'':
Flouxetine improved intravaginal ejaculatory latency time through decreased levels of interferon-gamma and increased levels of serotonin in patient with premature ejaculation
https://ojs.unud.ac.id/index.php/ijbs/article/view/4499

Elevated IFN-g/Th1 polarization

Latent Viral Infection:
https://www.ncbi.nlm.nih.gov/pubmed/19906390

Polarization switch from Th2 to Th1 due to desensitization?

Temporary IFN-g decrease after orgasm

1)Mast cell activation -> PGD2 -> activation of CRTH2 on Th2 cells -> Th2 response -> decreased IFN-g
2)Th2 response -> induction of IgG4 -> dampening of Th2 response -> Stops IFN-g decrease
(T-regs might play a role in this)

IL-8

Essential involvement of interleukin‐8 in acute inflammation
https://jlb.onlinelibrary.wiley.com/doi/abs/10.1002/jlb.56.5.559

Female family members and decrease/increase of symptoms in pregnancies/menstrual cycle period

Neuroimmunoendrocrine disorder:
''These results suggest that mast cell secretion may be regulated by progesterone and may explain the reduced symptoms of certain inflammatory conditions during pregnancy.''
Progesterone Inhibits Mast Cell Secretion
http://journals.sagepub.com/doi/abs/10.1177/039463200601900408

Role of female sex hormones, estradiol and progesterone, in mast cell behavior
https://www.frontiersin.org/articles/10.3389/fimmu.2012.00169/full

Shift in Th1/Th2/Th17 balance:
Inflammation and Pregnancy
http://journals.sagepub.com/doi/abs/10.1177/1933719108329095

REVIEW ARTICLE: Th1/Th2/Th17 and Regulatory T‐Cell Paradigm in Pregnancy
https://onlinelibrary.wiley.com/doi/full/10.1111/j.1600-0897.2010.00852.x

Microbiome change during pregnancy:
Microbial Changes during Pregnancy, Birth, and Infancy
https://www.nature.com/articles/ajg1998420
« Last Edit: August 08, 2018, 04:19:21 PM by Muon »

Quantum

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Re: Muon's Case
« Reply #1 on: October 18, 2017, 10:07:00 PM »
Hi Muon,

Thanks for all this information that you share.

It is not uncommon among POIS sufferers to have other associated illnesses like those you mention.  Dr Waldinger have noted, in particular, the high prevalence of premature ejaculation in POIS sufferers.

I would like to mention that skin prick test with own semen is no longer considered a diagnostic test for POIS.  Waldinger himself have abandoned this approach.  There is also the Chinese study where many control subjects ( with no POIS) have tested positive with the auto-semen prick test, which prove that it cannot be used to detect or diagnose POIS.  So, we are still waiting for a test that could diagnose POIS, which for now can only be "diagnosed" with the 5 criteria of Dr Waldinger, based on clinical manifestation.

Thanks again for taking the time to post your data, even if you are restricted in energy, and take good care of yourself.  I hope you'll find soon some relief and raise your level of energy and quality of life.

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

swell

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Re: Muon's Case
« Reply #2 on: July 14, 2018, 03:46:37 PM »
wow I never read this thread till today and was frozen while reading.  Moun's your symptom match mine.  Thank you for sharing these links.  Not to badger you, but the link you posted: Impairment of microcirculation of the facial nerves catches my attention, talks about: Endothelin, which has potent vasoconstrictive effects, may contribute to the pathogenesis of the microcirculatory impairment that occurs in patients with Bell palsy, mainly by promoting secondary ischemia.  I dont follow since we POISers have low BP and Endothelin constrict vessels raising BP.  During POIS, I get severe burning in my Palsy areas, as if nerves are trying to fire up but unable to.  When I take vasodilatory things (specially a med, gabapentin) that burning sensation stops but I dont know if vasodilatory is the key or its something else the key that helps.  But I know that POIS creates a burning sensation also across all distal peripherals, like ankles, wrists, exact symptoms of Raynaud syndrome.

Hopeoneday

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Re: Muon's Case
« Reply #3 on: July 14, 2018, 04:48:32 PM »
95% of my symptoms is same. Thanks for posting test results, it help us a lot for resarchcing.
« Last Edit: July 14, 2018, 05:20:05 PM by Hopeoneday »
Dr-pois.

Simon66

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Re: Muon's Case
« Reply #4 on: August 29, 2018, 03:23:50 PM »
Thank you for this information, I will get my leukocytes tested so I have a record of inflammation. Let us know how your bone markers beta-CTx and osteocalcin look.