Muon's Case

[Muon]

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=0

My 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
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

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/measurements

Heart rate and blood pressure data (2013)
Gastroduodenoscopy
Body 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/M
MAOA-Gen (30bp-VNTR) Low
BDNF Val66Met-Polymorphismus V/V
Serotonin-Transp.-Promoter PCR Genotyp K/L

Reminder: 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:

• 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 Dynamics

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.

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 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.
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 Symptoms

List of triggers

Release 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)
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 triggers

Food (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.

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 Symtoms

Info for doctors from a doctor's point of view

Symptom dynamics/situations

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, 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)

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

More to add and need to go more into dynamics

[Muon]

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.

Younger brother:

• Post-orgasmic illness syndrome
• Pectus excavatum
• Emphasis on neuropsychiatric symptoms
• Burning feeling in brain
• Very sensitive to food
• Insomnia
• High libido
• They did do a non-specific allergen degranulation test. My brother told me they observed degranulation before allergens were even applied. The source of degranulation is unknown

Tons of symptoms and he had other diagnosis, I have to ask him about it. Will add later.

Mother:

• Osteoporosis
• Carpal tunnel syndrome and delivering squeezing power with hand is difficult
• Pollen induced hayfever (elevated IgE)
• Low vitamin D
• Intravaginal sensitivities: Burning sensation upon contact with semen. (Reminder: I believe there was more)
  
• A cold sore every now and then
• Easy bruising
• Unexplained areas of the skin that can turn red
• High cholesterol levels
• Blood pressure problems
• Calves feel heavy
• Varicose veins in legs (painful lower legs)
• Red eyes (Blood eyes, no visible eye white)
• Constipation
• She had an accute attack of intestinal inflammation (Blood in stool, pain, elevated CRP)
• Getting attacks of cold
• Sense of feeling cold much of the time
• Stiff muscles
• She can touch her toes from a standing position while legs are straight
• Fluctuating pattern of symptoms
• Sometimes she feels and hears a big 'tick' inside her head, it's only one when it happens. Her most scary symptom.
• Brain MRI shows a small black dot (need to ask her about the position)
• My mother laying often on bed during the day when I were a young kid. She was stressed. She was probably in her early 40's.
  
• Often forgetting things
• Speaking mistakes (meaning one thing but saying something different)
• Difficulty coming up with the right word, searching for that one word that completes her sentence.
• Sometimes her tongue hurts by eating food, walnuts for example.
• Problems with citrus fruits.
• She can't sit still for a long time and has to be in motion.
• Difficult to sit in 90 degree angles.
• A flare of a nasty feeling around the heart area. (I got this as well, I think it's an inflammatory flare at the surface of the heart or heart muscle.)
• Bladder infection (peeing blood, used antibiotic)
• Eye Lid tremor
• Early satiety
• Idiopathic miscarriage
• 5 years on Bisphosphonate had no effect on her osteoporosis

July 2020: She had to push against a mobile caravan for a short time window with alot of force and felt immediately better afterwards.

Aunt (my mother's sister):

She had some sort of reddish/blueish rash over her body when she was a few years old. She was placed in quarantine and doctors couldn't figure out what is was, they were thinking of Rubella. Her skin became like sandpaper, when that happened dermatologists literally peeled the upper layer off. When they got rid of this sandpaper like layer she recovered. Dental decay despite good hygiene and dental care. She had food sensitivities.

I have asked her about her symptoms a while ago because Waldinger was curious about it. I will translate it literally what she has sent me.

• Persistent fatigue which is not restored with adequate rest and sleep.
• Always feeling sick, broke, general malaise.
• Temperature fluctuations (increase, hour later sub-temperature again, etc.)
• Vegetative reactions (sweaty hands, dizziness, disorientation, unstable feeling on the legs (rubber legs)).
• Orthostatic hypotension (seeing stars after squatting, getting up from a sitting position, etc.)
• Immune problems (pick up every virus that prevails and then spend 2 or 3 weeks with it under the pans that others have or do not suffer from or get rid of within a day or three) (non-specific and specific defense)
• Cognitive problems: difficulty concentrating, unable to focus, being woolly in the head, being unable to hold or complete thoughts, problems formulating sentences or coming to words. (one day better than the other, unpredictable).
• Short attention span (unsure with translation: korte spanningsboog), cannot maintain concentration or perform work for long periods. Must have limits in it.
• Light shyness (dutch = lichtschuwheid)
• Difficulty reading, double vision, night blindness (for my feeling from one day to another, according to optician at the time nothing wrong with my eyes).
• Sounds sound loud and penetrating (whiplash-like complaints).
• Headaches, sore throat.
• Regularly swollen glands in the neck and groin.
• Urticaria (urtica's, allergic skin reactions but no idea what I'm triggering from, often after picking up a virus or the like and often at the time of menstruation but sometimes also without any apparent cause).
• In the past: pituitary dysfunction resulting in no menstruation (approx. 3 to 4 years), sleep disorders, no melatonin production, disturbed biological clock (examined and determined by specialist), maternity mask (also called melasma) without being pregnant. Determined by dermatologist. Advice dermatologist at the time: have your thyroid function checked regularly. That done: TSH thyroid at 0.42 (on the lower limit). Just fell within the reference value so GP saw no reason for treatment. I gained 15 kilos in two weeks without changing my diet (blew up like a puffer fish), dry skin, night sweats, etc. I had all the symptoms of the transition while I was 32 or 33 years old. After taking blood samples I turned out not to be in transition, but my pituitary gland turned out to be working a little below standard but according to the doctor not to the extent that treatment was needed.
• Leucocyte values ??always increased! Whenever I have blood sampled, always increased! Hemoglobin just on the border.
• Adrenal dysfunction (cortisol, adrenaline) (mesologist diagnosis).
• Calcium household problems (mesologist diagnosis)
• Calf cramps (every day, night and morning to such an extent that it wakes me up).
• Must always dose my activities, including fun activities. After a birthday o.i.d. overtired.
• Avoid crowds regularly for that reason or have to plan that and reserve rest after that time to be able to refuel. And often that's not enough.
• Battery is empty quickly and takes a long time to get some spare. Limited taxability in many respects.
• Fungal infections are a common thread through my complaints. From about my 17th almost continuously suffer from vaginal fungal infections until around my 35th. Also regularly bladder infections where I got antibiotics from the doctor. But that naturally encouraged fungal formation. From around the age of 32 I was diagnosed with intestinal dysbiosis with opportunistic candida (by a nature doctor). Candida diet, anti-candidate drugs etc. These improved my health, mesological treatment has also contributed to this. To date, sensitive to yeast/fungi. Noticeable by stubborn athlete's foot and lime nails (sign that it is still not right). For years no longer suffer from vaginal fungus. Immune problems and others remain.

Grandma (My mother's side):

• Brain aneurysm
• Periods where weakness in legs led to bedriddeness and couldn't walk stairs.
• She went swimming during summer, something locked in back when she went into the water, she couldn't get out of the water. This led to weakness in legs.
• Multiple Transient ischemic attacks (TIA); One-sided facial droop etc
• Colorectal polyp
• She felt better when she did not eat
• Was intolerant to chocolate
• Even in her late 70s she could pick up her foot and plant it against her face
• Fainting (had this since childhood). She felt it coming. She didn't feel well and was getting hot prior to fainting. She had to lay down for better circulation when these signs showed up and had to cool down her forehead and wrists.
• Heavy pain around her feet and ankles. Did not happen a lot but it ramped up fast and she screamed. People had to put her feet into a tile of water. My mother can't remember what the temperature of the water needed to be, cold or warm.
• They did do a muscle biopsy on her but found nothing. It's unknown what they were looking for.
• Couldn't sit still for long periods of time. Need to be in motion.
• Bladder infection
• She felt better on Enterosalicyl.
• Constipation
• Bloating in the abdomen
• Episodes of low blood pressure
• They injected her something in her throat via the oral way and she did get better in general (substance unkown).
  
• Went crazy and died just like her grandmother.
• She used blood thinners because she had thick blood.

Reminder: There was something with food preparation, need to ask. There was something with the hands, Raynaud?

Healthy Family members

These folks are, from what I know, basically healthy but there are some oddities.

My mother's younger brother

• He did get rashes over his body as a kid when entering chlorine swimming pools. He outgrow this symptom when he got older.
• Depression

I heard he had more problems during the past years like gut pain (details unknown) after he stopped smoking weed (was a daily weed smoker from what I know).

My mother's older brother

• Cardiac issues (details unknown to me)

My older brother's daughter

• She reacted to dust and milk when she was a few years old. I asked if this was a true allergy but nobody knows.
• Spontaneous bursts of saliva production
• Sometimes she looks pale with dark coloration under her eyes.
• Sugar cravings
• Acne
• She forgets to hydrate because she isn't thirsty. (I have this symptom, need to remind myself to drink)
• She has light asthmatic-like symptoms at this moment in time (15 years of age, Dec 2019). Her lungs make sound when exhaling quick which makes her breath heavy afterwards.
• Jan 2020, Runny nose when transitioning from warm to cold environment.

Other family members, health status unknown

The daughter of the brother of my grandmother (mother's side)

• She walks around with a body temperature of 35.0 Degrees Celsius since birth and is always cold, sometimes it drops to 34.5.
• Arthritis
• Her daughter faints when her daughter's core temperature rises

Commentary and thoughts on symptoms

Symptom triggers are similar as seen in MCAS patients but are also a form of stress. Stress signaling/response could (be abnormal) affect the ANS which on its own could be in a state of sympathetic dominance outside of stress.

Looking at the factors which reduce symptoms I noticed that they increase parasympathetic activity by stimulating the vagus nerve.
https://selfhacked.com/blog/32-ways-to-stimulate-your-vagus-nerve-and-all-you-need-to-know-about-it/

Ideas/papers/suggestions

POIS

Sympathetic overactivity or parasympathetic underactivity (Dysautonomia)
Mast cell activation disorder/cascade/hyperresponsive mast cells
Hyperpermeability/barrier dysfunction in genitourinary system (connective tissue problems)
Th2 response
Regulatory T cell dysfunction or abnormal numbers
Type IV Hypersensitivity
Denervation supersensitivity

POTS

Mast cell activation disorder:
Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome (P1.277)

''Triggering events include long-term standing, exercise, premenstrual cycle, meals, and sexual intercourse''
Hyperadrenergic Postural Tachycardia Syndrome in Mast Cell Activation Disorders

A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome

Autoimmunity/Viral illness
Autoimmune Basis for Postural Tachycardia Syndrome

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

Transport-mediated choline deficiency:
Mechanism of choline deficiency and membrane alteration in postural orthostatic tachycardia syndrome primary skin fibroblasts

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

Blood viscosity:
Bell?s Palsy and Viral Infections

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

Autonomic nervous system dysfunction in lifelong premature ejaculation: analysis of heart rate variability.
https://www.ncbi.nlm.nih.gov/pubmed/23102443

The Role of Brain Derived Neurotrophic Factor in Etiology of 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

"It is consistently observed that mast cells [8] and mast cell-derived exosomes preferentially induce Th1-type responses as evidenced by the production of IL-2, IFN-g and IL-12 by activated lymphocytes."
Nonspecific B and T Cell-Stimulatory Activity Mediated by Mast Cells Is Associated with Exosomes

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)

Th1 polarization + IL-8

Human Cathelicidin Peptide LL-37 (need ref)

Interferon-g enhances both the anti-bacterial and the pro-inflammatory response of human mast cells to Staphylococcus aureus

IgG4

Growth hormone and insulin-like growth factor I induce immunoglobulin (Ig)E and IgG4 production by human B cells.

Nerve growth factor specifically induces human IgG4 production

Potential drivers: IL-4, IL-5, IL-10, IL-13 (MC), IL-21, Follicular helper T cells, TGF-beta, expanded Tregs, IL-33?.

Mast cells have been suggested as an altenative source of TH2 cytokines, based on their colocalization with IL-4 and IL-13 in IgG4-RD lesions from salivary glands. Page 62: Ref

"Thus, our results do not support the hypothesis that T cells express the cytokines associated with IgG4-related disease; rather, our data indicate that mast cells are the source of these upregulated cytokines."
T helper 2 and regulatory T-cell cytokine production by mast cells: a key factor in the pathogenesis of IgG4-related disease

Hyper-IgG4 disease: report and characterisation of a new disease

IL-8 (CXCL8)

CRH-->mast cell activation
Substance P (SP) Induces Expression of Functional Corticotropin-Releasing Hormone Receptor-1 (CRHR-1) in Human Mast Cells

Drop in IL-8: Combine
Specificity of the neuroendocrine response to orgasm during sexual arousal in men
with
Neuroendocrinology of mast cells: Challenges and controversies.

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

IL-33 (table 4)
Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?

LPA ---> LPA2 receptor, table 1:
Non-IgE mediated mast cell activation

SDF:
"Stromal cell-derived factor-1 alpha (SF-1?) selectively produced IL-8 from human mast cells without degranulation as well. Activation of human cultured mast cells by CD30 ligands led to release of the chemokines IL-8 and MCP-1 without histamine and without degranulation. IL-33 induced IL-13 release independent of IgE stimulation" Ref

IL-13 can induce IgE and IgG4. IL-33 can induce IL-13 and IL-8.
Brother: Elevated IgE and IL-8. Me: Elevated IgG4 and IL-8. Thus IL-33 is a potential candidate.

"Stimulated T cells were found to generate microparticles that induce degranulation and cytokine (IL-8 and oncostatin M) release from human mast cells. Mast cell activation by T cell microparticles involved the MAPK signaling pathway." Ref

"We recently reported that extracellular vesicles are increased in the serum of children with ASD, contained mtDNA and stimulated cultured human microglia to secrete the pro-inflammatory molecules IL-1? and CXCL8 " Ref

Candida Albicans and mast cells (?-Hexosaminidase?):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4507480/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3374363/

OxLDL and mast cells:
https://journals.sagepub.com/doi/pdf/10.1177/039463201002300403

Weakness in upper legs (+spasms) worsen with high temperature, standing, POIS and stress. Relief with exercise, laying down, bending forward.

P/Q-type VGCC antibodies? As in https://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome
Spinal stenosis? (pressure in lower back as well)
MS?

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

Low NK cell count

Stress, beta-AR activation:
Adrenergic regulation of innate immunity: a review

Decreased Alpha-2-globulin

High MMP 2 or 9 --> joint pain, which can bind to alpha-2-macroglobulin which is a subset of Alpha-2-globulin.
https://en.wikipedia.org/wiki/Alpha-2-Macroglobulin

Accelaration of frequency and intensity of symptoms during period of intense exercise/sports on daily basis

The open window of susceptibility to infection after acute exercise in healthy young male elite athletes

[Muon]

Data overview (Work in progress)

9th and 10th of July 2015

Muon 1-1:
TH1/TH2 Ratio: 43.5 Ref: 3.5 - 11 page1: 10:00 AM
TH1/TH2 Ratio: 39.6 Ref: 3.5 - 11 page3: 10:15 AM
TH1/TH2 Ratio: 35.3 Ref: 3.5 - 11 page4: 10:42 AM
TH1/TH2 Ratio: 42.0 Ref: 3.5 - 11 page5: 10:05 AM (24 hours later)

An ejaculation took place between the first and second measurement.
The last ejaculation before that took place at 23-06-2015.
They took blood samples while I was in the supine position.

August 13 and 14 2015 

TH1/TH2 Ratio: 28.9 Ref: 3.5 - 11 Muon 2-1: 10:15 AM
TH1/TH2 Ratio: 32.1 Ref: 3.5 - 11 Muon 2-2: Went in the blood collection room at 10:38 AM and left at 10:43 AM
TH1/TH2 Ratio: 31.5 Ref: 3.5 - 11 Muon 2-3: Went in at 11:10 AM and left at 11:16 AM
TH1/TH2 Ratio: 70.8 Ref: 3.5 - 11 Muon 3-6: 10:25 AM (next day)

An ejaculation took place between Muon 2-1 and 2-2 around 10:25 AM.
The ejaculation prior to this was 4 or 5 days back.
Blood samples were being taken in the supine position.

Interferon gamma (Th1), august 13 & 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IFN-g (TH1)	~10 min before orgasm	1315	374-1660
IFN-g (TH1)	~15 min after orgasm	1147	374-1660
IFN-g (TH1)	~45 min after orgasm	978	374-1660
IFN-g (TH1)	~24 hour after orgasm	3053	374-1660

IL-10 (T-reg) august 13 and 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IL-10 (T-reg)	~10 min before orgasm	774	760-1900
IL-10 (T-reg)	~15 min after orgasm	638	760-1900
IL-10 (T-reg)	~45 min after orgasm	542	760-1900
IL-10 (T-reg)	~24 hour after orgasm	1045	760-1900

There is probably a minimum somewhere within the (45 min - 24 hour) interval after orgasm.

IL-2 (Th0) august 13 and 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IL-2 (TH0))	~10 min before orgasm	433	384-960
IL-2 (TH0)	~15 min after orgasm	415	384-960
IL-2 (TH0)	~45 min after orgasm	335	384-960
IL-2 (TH0)	~24 hour after orgasm	281	384-960

IL-4 (Th2), August 13 & 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IL-4 (TH2))	~10 min before orgasm	45.5	40-198
IL-4 (TH2)	~15 min after orgasm	35.7	40-198
IL-4 (TH2)	~45 min after orgasm	31.1	40-198
IL-4 (TH2)	~24 hour after orgasm	43.1	40-198

IL-17 (Th17), August 13 & 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IL-17 (TH17))	~10 min before orgasm	51.6	49-446
IL-17 (TH17)	~15 min after orgasm	40.8	49-446
IL-17 (TH17)	~45 min after orgasm	31.3	49-446
IL-17 (TH17)	~24 hour after orgasm	57.1	49-446

IL-8, August 13 & 14, 2015:

Parameter	Time	Value in pg/ml	Reference range in pg/ml
IL-8	~10 min before orgasm	89.8	<15
IL-8	~15 min after orgasm	59.0	<15
IL-8	~45 min after orgasm	41.9	<15
IL-8	~24 hour after orgasm	36.6	<15

Release of cytokines need intracellular calcium, they all go down post O. Is there a decrease of intracellular calcium inside leukocytes? IFN-g may still be climbing days later as in a type IV reaction.

Muscle stiffness, spasms post-orgasm could indicate changes in intracellular calcium concentration. Another trigger is heat/high ambient temperatures especially during rest after movement (just taking a walk) through hot environments.

Throwing some ideas around:

Calcium signaling in immune cells

Calcium, Channels, Intracellular Signaling and Autoimmunity

Regulating T helper cell immunity through antigen responsiveness and calcium entry

Decreased intracellular calcium stimulates renin release via calcium-inhibitable adenylyl cyclase

Reminder: Could take a look at AMPAR's/Calcium/L-Theanine?

[Muon]

Paper dump section

A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

Balancing tissue homeostasis and inflammatory responses against Candida albicans infections: is it a matter of mast cells' immunological memory?

Gut fungi in irritable bowel syndrome : A painful recognition

https://sci-hub.se/https://www.sciencedirect.com/science/article/pii/S0090429516001898

https://www.tandfonline.com/doi/abs/10.1080/713846825

Is burning semen syndrome a variant form of seminal plasma hypersensitivity?

Is skin testing reliable for confirming sensitization to seminal fluid proteins?

Review of flavonoids: A diverse group of natural compounds with anti-Candida albicans activity in vitro

Past Events

2013

2014

Recent Events

Summer 2019

Intense flares of pressure at heart area accompanied by weakness in left arm.
All the time pressure at lower part of spine when standing plus weakness in legs.

Somehwere around November 2019

Walked in supermarket, felt some activity in brain (not at the middle of brain) at them same time my left side of my face was hanging for a moment, as in decreased muscle tension.

Also had a moment where I had to help someone with their homework. Got a bit stressed by prolonged talking, felt activity in brain and couldn't talk properly for a minute. Could not create any word with my lips.

There were a lot of days where I couldn't get warm and was cold all the time.

Late December 2019/early januari 2020

Activity at lower part of spine plus pressure at that area. Weakness in legs when standing.
Bladder control problems, Frequent urination, this was getting worse when there was more activity at lower spine.

Januari 2020

A few times tingling sensation at the glans penis and became very sensitive to any friction (not sexual related just limp penis).

Februari 2020

I ate some liver and suddenly became feverish and nauseous for less than 30 sec of duration immediately after ingestion. Perhaps 5-10 mins after there were migratory colds traveling over my body and turned into systemic cold (shivering) after the migratory cold ended.

Problems with stress as a trigger, most of the time physical stress by static body positions. Starts with tension -->stress---> inflammation.

Weak spot in lower part of spine ---> local tension ---> standing/sitting/bad posture ---> focal tension turns into focal inflammation ---> as time goes by other parts in body one by one, most often the weaker parts have a higher chance, getting smoldering focal inflammation ---> when it stays this way it turns into systemic symptoms, like fibromyalgic-like weakness around the hip area and fatigue.

This behaviour can be prevented if local/focal stress is reversed in time. There is a certain intensity threshold that when you cross it you are unable to reverse the above process.

Symptoms of stress can be very subtle, it can gradually increase without notice. Local/focal stress, even by immobilization is able to induce the following symptoms lately:

1) Very light burning on top of forearms and/or shoulders. Goes away immediately when stress stops.
2) Worsening of Blepharitis
3) Activating oral mucosa (sense of activity, surface fizzing) ---> bad taste ---> increased reactivity of food/mucosal contact
4) Runny nose (also when taking a walk in POIS and certain muscles can't handle standing posture thus again, focal stress turns into focal inflammation at the same weak spot--->runny nose)
5) Weakness in legs
6) Inflammation (especially at spine lately)
7) Some activity in the lower abdomen sexual organ related (only after multiple parts of the body are affected)
8 ) Some activity in lower part of abdomen GI related, same spot as triggered by temperature in summer 2014 (again only when after multiple parts of body are affected).
9) Joint pain, not sure if this is triggered by stress. Joint pain seem to be a late reaction, can't put my finger on it with certainty what triggered it.
10) Fatigue, only when inflammation by stress has affected mutliple spots.
11) Fibromyalgic weakness/pain around tendons of hip. Again, only when inflammation by stress has affected multiple parts of the body and is ongoing.

Eating apples again and symptoms induced by apples have changed from fatigue to a runny nose. Reactivty with oral mucosa is worse when oral mucosa is being activated by stress/inflammation in other parts of the body.

New symptom, happened only once: Intense sharp pain for maybe 2-3 seconds at right kidney location. Never felt anything like it before.

June 2020

Developing symptom: Sharp localized pin point stings in urethra mostly by low grade stress.

Developing symptom: Neck tension/pain

Improved Brain fog (large improvement. It took at least 6 months, slow trending motion) and mood swings much better. Improvement in facial appearance.

October 2020

Had pinpoint activity next to my eye in my skin. This lead to a brown coloration of that part of the skin. Happened again at a later date close to the same spot, same behaviour, led to another dot of brown coloration.

Washing the glans penis during shower led to activation in lower back at the spinal area (which is already sensitive), no pain, just activation of something and it isn't muscle, no feeling of contraction. Activation stops when friction stops. Applying friction again flares up activity in my lower spine again.

Encountered multiple episodes where I'm suddenly out of breath during rest. The behaviour you see after taking a sprint, but I haven't done anything like that.

[Muon]

Spinal MRI and reminder to look for spinal findings in more patients (including MCAS):

5.- Magnetic Resonance Imaging of the entire spine(June 2018):
     multiple focal lesions were observed in the dorsal and lumbar spine, hyperintense in T2 and most of them isointense in T1, although the larger lesions have a trabecular structure suggesting that they are hemangiomas. However, given that the signal characteristics in the T1 sequence are not typical of hemangioma, it is recommended to do image control to assess evolution.

Chymase and cardiovascular problems:
Contributions of ACE and mast cell chymase to endogenous angiotensin II generation and leucocyte recruitment in vivo

"Conclusion
In vivo, Ang II is primarily generated by ACE under basal conditions, but in inflammatory conditions, the release of MCP amplifies local Ang II concentrations and the associated inflammatory process. Thus, AT1 receptor antagonists may be more effective than ACE inhibitors for treating ongoing Ang II-mediated vascular inflammation."

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