I will first start showing privately funded test results regarding POIS(?) and will update this post along the way. Click
here for time stamps and
click here for an overview in table format.
My data:
https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0My brother's data (who has POIS as well):
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.
Summary of Muon's abnormal parameters (under construction)
Date of testing might be relevant, since the state of the body changes over the years and seasons (Netherlands) affect me as well.
11Beta-Prostaglandin F2 Alpha (24h urine) (H)
Alanine-aminotransferase (H)
Alpha-2-Globulin (L) (needs further differentiation)
Candida Albicans LTT (Very high lymphocyte proliferation)
CD57+ Natural killer cells (L)
Cholesterol (L) (
1,
2)
Cytomegalovirus IgG (H)
Cytomegalovirus LTT (Latent)
Epstein-Barr virus recombinant early antigen p138 IgG and p138 IgM (H)
Glucose (L)
Hematocrit (L) (
1,
2)
Immunoglobulin G4 (H, exact value unknown due to cut-off limit) (
1,
2)
Interleukin-2 (L) (
1(L, L, L, N),
2(N),
3(N),
4(L),
5(L))
Interleukin-8 (H) (
1,
2,
3,
4,
5)
Leukocytes (L)
Lymphocytes (absolute) (L)
Natural killer cells (L)
TH1/TH2 cytokine balance (H) (
1,
2,
3,
4,
5)
Varicella zoster virus IgG (H)
Varicella zoster virus LTT (Latent)
Muon 6-1 Medlon: A collection of tests that were done at one lab. Vitamin D3 (L), B6 (H), B9 (H), Active B12 (H), Phosphate (L), ALAT (H).
Other reports/measurementsHeart rate and blood pressure data (2013)GastroduodenoscopyBody fat percentage (L) (
1,
2,
3) (This is not done at a medical clinic but at a local gym)
Summary of my brother's abnormal parameters (under construction)
Brain-derived neurotrophic factor (L) 14.9 ng/ml RR: 18.3 - 31.4 ng/ml
Eosinophil Cationic Protein (H) 34.5 ug/l RR: < 13.3 ug/l
Glucocorticoid receptor activity (L) 1.3 RR: 1.4 - 2.4
Interleukin-8 (H) (
23.7,
24.0) RR: < 15 pg/ml
Interleukin 17 (L) 43.9 pg/ml RR: 49 - 446 pg/ml
Immunoglobulin E (H) (
129.0,
125.0) RR: < 87.0 kU/l
Lipoprotein-associated phospholipase A2 (Lp-PLA2) (H) 214 nmol/mi/ml RR: < 151 nmol/mi/ml
Serotonin (L) 64.2 ug/ml RR: 80 - 400 ug/ml
Tryptophan (L) 1.10 mg/dl RR: 1.21 - 2.30 mg/dl
Type IV cellular sensitivity response against Rye, hazelnut and peanut My brother's genetic related results:COMT-V158M-Genotyp M/MMAOA-Gen (30bp-VNTR) LowBDNF Val66Met-Polymorphismus V/VSerotonin-Transp.-Promoter PCR Genotyp K/LReminder: He had other genetic tests done. Serotonin in serum has been checked multiple times at other hospitals and always turned up low. Ask him about it.
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)
- Blepharitis (2019)
The only diagnose that isn't based on physical data is CFS.
Peculiarities/miscellaneous:
- Enlarged/swollen left testicle, at age ~19/20 I believe , prior to POIS diagnosis (scan revealed benign thickening)
- Vitamin D deficiency (range:10-20)
- Iron deficiency (once, when I was 7 years old, don't have the value)
- Decreased urinary Sodium levels (Once, happened with onset of heavy POTS symptoms)
- Elevated ALAT (multiple times)
- Hypercobalaminemia
- Lifelong Premature Ejaculation (<10s)
- 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/acne on shoulders and back
- White/yellowish uneveness/spots inside cheek which closely resembles oral fordyce granules
- Pearly penile papulas
- (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
- Mouches Volentes/floaters (Left eye, black points)
- Physiotherapist told me I was the only one who he could easily fold up in a certain way. Like pressing knees towards the face in a flat position. Hypermobile in certain positions.
- March 2008: MRI of the skull and MR-angiography of the carotid arteries: Slight mucosal swelling in the area of ??the nasal sinuses
- The fiber free diet I had to eat for a few days prior to the hydrogen lactose breath test gave me better stool
- Steroid injection into the groin area resolved local symptoms completely for at least 4 hours. Reminder: look up in archives what they used for injection, steroid might have inhibited IL-33 mediated MC activation, compare steroid with paper.
- I could not hold my left eye steady during measurements at the optometrist. I wasn't able to focus my eye to one point, it kept circling away and around that point. Something I noticed when reading but this time a professional noticed it as well.
- During recovery of Bell's palsy: I could not close my left eye without smiling (contracting a muscle(s) around corner of mouth). Neurologist told me that something might have went wrong during recovery, in that, nerves could touch eachother. He injected Botulinum toxin to destroy end plates again to let it recover properly. It helped somewhat.
- Reminder: Finding picture of anomaly in stool.
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
- Stiff muscles
- Muscle cramp
- 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 (only when POIS puts emphasis on liver area)
- 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
- Indecision
- 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
- Mood swings
- Bad body odor
- Decreased accuracy of handwriting ,also problems with controlling videogames like aiming in FPS
- Faster spreading of local fungal skin infection at feet in POIS
- It can influence the heart, I suspect it's a change of heart rithm.
- Lung problems (bronchoconstriction or dilation?)
- Dry or greasy skin
- Decreased sense of smell
- Increased pressure in and/or behind the eyes, most frequent in left eye
- Dry mouth and activity on surface layer inside mouth (inflammation of mucosal membranes?)
- Stomach pain and/or makes stomach sensitive to foods, especially acidic food
(the above list is not complete, can also add frequency and relative intensity)
POIS DynamicsBefore 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.
There is a peak/maximum of fatigue intensity during the recovery phase.
!Perhaps I need to draw a graph to make it more clear
Scenario with sticky ejaculate:If the ejaculate is sticky some of it will stay behind post ejaculation, which leads to:
Burning sensation in urethra.
While it burns: The continues urge to urinate while having an empty bladder.
My anus starts to burn.
Urinating quickly after ejaculation helps prevent the above symptoms.
Lower part of spine/leg jolt:
core symptoms/cyclic ones
Lung/POIS dynamics:
Event of cold attack by POIS during hot day:
Cold/Warm dynamics:
Social isolation dynamics:
Add reminder: Dynamics of Pre-ejaculate release without ejaculation and combination of pre-ejaculate phase with orgasm.
Chronological order of events2 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.
Age 28/2013 Crisis year. Complete escalation during summer when I sat in a train and the sun shone on me, POTS symptoms exploded. Cardiovascular problems, autonomic instability, extreme temperature sensitive, tons of weird events. Around December food sensitivities suddenly became extreme out of nowhere, mucosal membranes were highly reactive to food.
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. I have always been intolerant to hot baths as a kid. Slijmproductie in keel door Yoki. Doorslikken voedsel ging niet makkelijk als kind zijnde, moest appelmoes erbij eten. Lot of IBS-like symptoms early 20's (GP gave me Psyllium which made symptoms worse, took it a few times).
General SymptomsList of triggersRelease of pre-ejaculate
Food
High temperatures
Temperature change (Like going from >20 C inside and putting a garbage bag outside during winter <0 C without winter jacket (this can lead to sudden tension build up slightly above adam's apple at left and right side), however when dressed properly it has a positive effect)
Drinking tapwater
Airborne particles: Dust, Diesel exhaust, sigaret smoke, parfums, Food scent
Fatigue
Fasting
Exercise
Sleep deprivation
Stress
Large meals
Prolonged standing or sitting (sitting on a chair without back support wrecks me)
Prolonged discussions leads to fatigue which leads to more cognitive symptoms
Medicine/supplements: Citalopram 10 mg/day (headache), Daktarin oral gel (additional problem when addressing fungal oral infection)
Thunderstorm: breathing difficulties which can lead to hyperventilation at the moment before the storm hits.
Duration and frequency of triggers can make symptoms worse
Each trigger has its own dynamics and set of symptoms with overlap, I could add this later.
Synergy of triggersFood (split up in food and diet?)
I react to everything at a certain degree. Below are some examples. On top of my head:
- Apples. Wave of fatigue sets in approx ~1 mins after ingestion. Fatigue lasts about 10 or so mins. Different brands giving different intensity but same type of symptom.
- Banana. Lightly Nauseous once it enters the stomach, oral and throat mucosa can react to it as well. Unripe green banana's are far better tolerable.
- Fruit juices. Nauseous, fatigue, throat/stomach irritation, feeling it won't digest, horrible stuff.
- Tomato's. Nasal drip, runny nose, within 30 sec.
- Whole grains. Loose stools, heavy on my digestion system, other GI complaints which I have to look up, don't eat them anymore. Wheat can give me red pencil sized dots on my hand
- Nuts. Loose stools or Diarrhea, nasal drip or runny nose. Walnuts can give me a painful tongue. Pistache nuts give me relatively the least symptoms.
- Chocolate. Just not feeling well especially in my head, sometimes my brain react to it, brain fog. Sets in 60 min after ingestion but depends on the amount, you can clearly feel the difference from 50 g pure chocolate. Some chocolate brands give me sticky stool instead.
- Spinach. Activity in oral mucosa upon contact. Sets in immediately.
- Watermelon. Variable and depends on the amount. Fatigue. Sets in within a few mins I think. I can react to the scent of it as well. Watermelon is the best tolerable one out of all melons I have tried.
- Spices. Nasal drip or runny nose.
- Passion Fruit. Upper wall of mouth cavity hurts and nasal drip or runny nose.
- Oak leaf lettuce. Dry mouth and slightly painful mouth cavity, looser stools than usual.
- Citrus fruits. Just out of the question, sore mouth, sore throat, irritated lips with oranges. Green lemon Stool problems.
- Mix of frozen grilled vegetables: Bell Peppers, Eggplant(Aubergine), zucchini. Painful tongue. Did test this mix multiple times, symptom consistent.
- Chicken thights. (They used some spices, need to test them natural) Diarrhea.
- Leeks. Can't remember exactly but I believe it gave me gum problems, haven't eaten this for a long time
- Whey protein powders. Red Pencil like dots on hand, probably more symptoms but can't remember at this moment.
- Shrimp. Diarrhea. Dutch shrimps are the best tolerable.
- Potato skin. Fast and short lived flare of dryness at a spot within throat upon contact. Felt like center of spot being triggered and dryness spread out.
Food that are relatively better tolerable:
Fresh big black ripe cherries (red ones or the smaller ones are giving symptoms)
Dragon Fruit (White Pitaya), maybe the best tolerable fruit for me.
Iceberg lettuce
Kale
Chicken filet and legs.
Vigs
Potato's well-baked depends on brand.
Egg yolk (don't feel well on egg white)
Symptoms
Examples
Heat- Heavy body
- Weakness
- Fatigue
- Pressure in lower spine
- Feeling of low grade systemic inflammation as a function of temperature
- Cardiac problems, blood pooling
- Decreased digestion and GI motility.
- Focal headache in centre of brain
- Fasciculations
- Stiff muscles
Tons of other symptoms to add here.
POTS SymtomsSymptom dynamics/situationsFactors contributing to symptom reductionPOIS- 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)
- Gradually feeling better after midnight and best at 3:00 am
- Taurine (minor effect, 45 min before Orgasm ~1g)
- Antihistamines (minor effect, only clemastine if I'm not mistaken)
- Protein rich diet (minor). Quicker recovery. Best source for me is meat especially chicken.
- CBD oil (minor effect, need at least 2 drops of 10% to feel something)
Desensitization peculiarities: A few occasions where I felt normal (never felt so good), the onset (rapid within minutes to max) is somewhere between 30-60 min after subcutaneous injection. Happened more than once. Mucous layer in mouth felt fully developed as in thick, no dry throat, muscle strength increased, no food reactions, better resistance to weather conditions/temperature. The effect diminished from the point of onset over the course of tens of minutes (after that maybe some minor effect still present over the course of a couple of hours, hard to say, I could have some notes about it somewhere). If this effect was permanently then my health issues would basically have been fixed in my opinion. And I wonder whether that was a window of opportunity to apply rush therapy as in getting another injection.
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
- Breathing slow and deeply (this is done instinctively when symptomatic)
- 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
- Gradually feeling better after midnight and best at 3:00 am
More to add and need to go more into dynamics
