Gather and Post Here Your Medical Tests Results - Discussion Thread

[quotz]

Hi quotz, thanks for test results, its wery helpful.
"My personal opinion" for your brain fog could be from low testosterone lewels.
I am curisos about did you mesured yours estradiol?

Yeah I did, it was somewhere around 15 units, not sure of the measurement, check it out in my medical files, its in the same file as the testosterone

[Nas]

Another suggestion,
Can you guys make two blood tests, one before ejaculation and one after, then we observe antibody activity to see what type is responsible for the immune response, many members tested normal for IgE for example but testing for the activity right after ejaculation could be a better method to determine weather the antibody is actually active during POIS or not.

[Hopeoneday]

Two last mebers posted low white blod tests-
Acording to mayo clinic-
https://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/causes/sym-20050615

What is intrseting to me is sarcoidosis, from all odher posible couses malnutrition, viral interupting bone marow etc...

Low Neutrophil https://www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854

And again lyme dese is ollways there- and symptomes allways go 1/1 to POIS https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651 
bells palsy - some poiser report that symptom to.

[Nas]

Two last mebers posted low white blod tests-
Acording to mayo clinic-
https://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/causes/sym-20050615

What is intrseting to me is sarcoidosis, from all odher posible couses malnutrition, viral interupting bone marow etc...

Low Neutrophil https://www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854

And again lyme dese is ollways there- and symptomes allways go 1/1 to POIS https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651 
bells palsy - some poiser report that symptom to.

Yes, HOD, this could be a sign of Granuloma cells concentration.
If true, then this indicates that the immune system is dealing with subsistence that it can not eliminate.
It would be great if we can narrow down possible substances involved in orgasm/ejaculation that can be susceptible to Sarcoidosis. 

[BluesBrother]

Yes, HOD, this could be a sign of Granuloma cells concentration.
If true, then this indicates that the immune system is dealing with subsistence that it can not eliminate.
It would be great if we can narrow down possible substances involved in orgasm/ejaculation that can be susceptible to Sarcoidosis.

I just came across a case report about testicular sarcoidosis: https://onlinelibrary.wiley.com/doi/pdf/10.2164/jandrol.110.012534

The case is connected to infertility. I have no idea whether it is relevant for understanding POIS.

There is also sarcoidosis of the prostate: https://www.sciencedirect.com/science/article/pii/S002253471304353X

[nanna1]

Hi BluesBrother,
 Thanks for sharing your medical data. There is a lot of information in your test!

A few patterns in the medical data:

  immune cells
--4 of us show normal neutrophil levels (Muon and Muon's brother, Nas, Vandemolen).
--6 of us show low neutrophil counts (nanna1, quotz, BluesBrother, certainlypois2, coal, Hopeoneday).
--1 of us show low monocyte levels (quotz)
--2 of us show low natural killer cell (NK cells) levels (muon, Brazil POIS study 2019)
--3 of us show low lymphocyte levels (muon, fernab, Brazil POIS study 2019)
----1 of us show low B cell lymphocytes (Brazil POIS study 2019)
--1 of us show lymphocytes do not increase in response to lung infection (aswinpras06)

  IgG subtypes
--2 of us show low IgG3 (Disaster, Kim POIS Study)
--2 of us show normal IgG3 (Muon, Muon's brother)

  MCAS and mastocytosis test
--8 of us show normal trypase (mast cell activation syndrome) levels (itsmel, BluesBrother, nanna1, Vandemolen, Muon, Muon's brother, jakov, Simon66).
--11 of us show normal IgE (allergy) levels (BlueBrother, aswinpras06, certainlypois2, Vandemolen, kurtosis, rjmlr, Yin POIS Study, jakov, Depreux POIS study, kingfisher, Arata POIS study)
--3 of us show normal histamine levels (nanna1 tested histamine, itsmel and Muon tested histamine and N-methyl-histamine).
--1 of us show low histamine levels (Simon66, tested histamine and N-methyl-histamine)
--1 of us show normal PGD2 levels (muon).
--1 of us test negative for mastocytosis (Stafie POIS study)

   Autoimmunity test
--5 of us have normal autoimmune panel test (nanna1, quotz, Vandemolen, muon, Arata POIS study).
--1 of us show possible autoimmunity (Iwillbeatthis), correlated with positive EBV (HHV-4) infection
--1 of us show normal/negative autoimmune antibody test for onconeural antibodies, insulin, peripheral NMDA-receptor, adrenal-cortex, potassium channel, glutamic acid decarboxylase (Muon's brother)

  Inflammation
--4 show normal C reactive protein (CRP) (kingfisher, certainlypois2, BluesBrother, Simon66)
--3 show normal ESR (Simon66, nanna1, certainlypois2)
--1 complement system activity (C3a, C4) normal (BluesBrother)

  methylation
--3 of us have normal folate levels (certainlypois2, quotz, BluesBrother)
--3 of us have normal homocysteine levels (BluesBrother, nanna1, jakov).

  Testosterone
"The global prevalence of testosterone deficiency (TD) ranges from 10-40%."
-Testosterone deficiency in adults and corresponding treatment patterns across the globe
--16 of us showing normal testosterone levels (BluesBrother, nanna1, Nas, Attia POIS Study, Starsky, coal, Vandemolen, CertainlyPOIS, fernab, Morgentaler POIS Study, Simon66, Clues, mardi, drop247, Kryzhanovsky POIS study).
--5 of us showing low testosterone (Quotz, Kim POIS Study, jakov, EDS, Kashanian POIS study).
--Testosterone test timed before and after orgasm (1 decreased): Kryzhanovsky POIS study

  Cortisol
--6 of us show normal cortisol (fernab, coal, POIS case study(2016), CertainlyPOIS, Martin88, Jferr)
--4 of us show high cortisol: jakov, Nas, Simon66, quotz
--Cortisol test timed before and after orgasm (2 decreased): EDS, Crushgrapes

  viral infections
--6 of us show positive cytomegalovirus HHV-5 infections (nanna1, muon, rjmlr, jakov, kingfisher, fernab).
--3 of us show positive EBV (HHV-4) infections (Certainlypois2, Iwillbeatthis, fernab).
--8 of us show negative HIV test (nanna1, Muon, Vandemolen, Brazil POIS study 2019, fernab, kingfisher, quotz, BluesBrother)
--3 report negative hepatitis (A, B, C) virus (nanna1, fernab, kingfisher)

  bacteria
--4 of us test negative for lyme (muon, nanna1, quotz, fernab)
--2 of us test positive for lyme (b_jim, Eliasjoelrivera)
--4 of us test negative for H. pylori (nanna1, quotz, BluesBrother, kingfisher)
--1 of us test negative for mycoplasma pneumoniae (jakov)

  non-arousal triggers for POIS-like symptoms
These are triggers that do not involve sexual activity or direct stimulation/involvement of the reproductive organs
--6: exercise (Muon, Quantum, demografx, nanna1, b_jim, POISse, wolf berry)
--5: heat, warm temperature, hot showers (Limejuice, demografx, b_jim, POISse, wolf berry)
--4: sleep disturbance, jet lag (nanna1, demografx, POISse, b_jim)
--3: scratching or applying pressure to specific locations on the body (fernab, nanna1, aswinpras06)
--2: smoking cigarette (Nas, POISse)
--1: pressure on the center of abdomen/stomach (IronFeather)

  Left-right asymmetric symptoms post-orgasm
--6 have some left-side only or right-side only symptoms (Muon, nanna1, fernab, POISse, swell, Case 1-Goldstein POIS study, eur79m)

  Other interesting parameters:
--Muon's test showing elevated IL-8 and low IL-2
--Nanna1 showed elevated creatine kinase
--Quotz test showing Mycoplasma Pneumoniae related immunofluorescence
--Habibou blood test show high norepinephrine (noradrenaline) levels in January 2011.

These threads are useful when interpreting the medical data:
Neuroendocrine responses to arousal and orgasm
Non-arousal triggers of pois-like symptoms

[aswinpras06]

my blood test reports done recently for a lung infection

[Muon]

Entamoeba histolytica has the ability to bore through the intestinal wall:
''The amoeba can actually 'bore' into the intestinal wall, causing lesions and intestinal symptoms, and it may reach the blood stream''
They also can release tissue destroying enzymes when certain type of sugars bind to their adhesive lectin binding molecule.

https://en.wikipedia.org/wiki/Entamoeba_histolytica
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104091/

Entamoeba histolytica and IL-8 production:

http://iai.asm.org/content/76/11/5158.short
https://www.gastrojournal.org/article/S0016-5085(97)70035-0/abstract
https://www.jci.org/articles/view/118161

Elevated lactoferrin could be a marker of intestinal inflammation. I wonder if lactoferrin and Entamoeba histolytica are related to eachother.

@aswinpras06:
Do you know what kind of infection? Have you been checked for Mycoplasma pneumoniae?
And are you going to check these abnormal parameters again when the infection is gone?

[aswinpras06]

Thanks a lot Muon for your advice
I'll definitely check for Mycoplasma pneumoniae if you my current test for tb comes negative. 

My doctors have diagnosed my disease as a lung abscess and are so far could not identify what has caused it.  I am a non-alcoholic and non-smoker.  So the most possible cause as per my doctor is, it should be tuberculosis.  They have done so many tests for tb and  all came negative. Fungal test also came negative.  So they've done bronchoscopy and are now waiting for the BAL fluid culture results based on which they will offer treatment.

I have not told them about Pois because I knew it would be of no use.

[nanna1]

Hi Nas,

  Neutropenia (low neutrophil levels) is a rare condition. Hopeoneday mentioned that low neutrophil counts seemed to be a pattern in some of the POISer medical data. So I did a statistical analysis on the current data donated by POISers at "Gather and Post Here Your Medical Tests Results". This includes 5 POISers who have posted Complete Blood Count (CBC) count data. I excluded one POISer data set because the CBC test was taken during a non-chronic infection/disease (outlier). Here are the results so far:

  The above chart shows the prevalence of low neutrophil levels (neutropenia) for individuals in the United States of America (USA) according to ethnicity (Hispanic 0.38%, white 0.79%, black 4.5%) and individuals with POIS (60%) from this forum. The data for neutropenia in the USA was taken from "Prevalence of neutropenia in the U.S. population: age, sex, smoking status, and ethnic differences."

  The error bars (confidence intervals, sample errors) for the population samples were calculated using the population proportion estimate with a confidence interval of 90%. This means that we can be 90% confident that the real percent of POISers with neutropenia lies within those error bars. But note that the confidence interval (error bars) for POISers and the general population do not overlap. This is a statistically significant result. The more POISers that submit their CBC test, the smaller the error bars will become and the closer we will get to the true probability of neutropenia among POISers. This could end up becoming the first bio-marker for this disease. But we need more data! A sample size greater than 10 people is ideal.

  I would like to do this statistical analysis for other interesting parameters as well. But there is not enough medical data for those parameters to reduce confidence interval. In some cases, the sample size is only 1. In any case, thanks Nas for asking. I hope this answers your question.

[certainlypois2]

cbc test is pretty cheap($28) on walkinlab.com
The when i get off my current supplement trial i will test it again pre and post orgasms.

[b_jim]

I will check but I think all my white cells parameters are normal.

[Quantum]

Message from LPM moved here from another thread:

Thank you for this great effort. We need more people using their skills to do what they can to find a solution. And we need to work together.

Please see the survey that I am starting: https://poiscenter.com/forums/index.php?topic=2753.0 I would love to hear everyone's comments and suggestions for improvement while the survey is still in draft stage.

In the survey, among other things, I ask about the symptoms, the medical tests, and whether any cures have helped. My hope is to try to correlate these things with each other. Perhaps a particular blood test result (such as low white blood cell count) correlates with particular cures.

Having all this info in a single data system should help with the research.

[quotz]

Nanna1, I do have low testosterone values which I have posted there in the evidence, however, the reference ranges in the document are outdated or improperly done. I suppose theyre done that way because I currently reside in a third world country, and the public healthcare system is trying to cut costs or the people operating it are incompetent. I have converted my values according to the reference values used in the US and it shows I do have low testosterone. For my age, 21 years old male, I have testosterone values of a 60 year old male.

[Nas]

I think we're making alot of progress when it comes to individual tests. There is a growing evidence that POISers are suffering from an over active immune system.
Certainlypois2 posted that he has high lymphocytes percentage but low granulocytes percentage. What can all that mean? It would be good if someone with knowledge in immunology can decipher possible reasons for such parameters in correlation with orgasm/ejaculation?

[nanna1]

Hi quotz,

  I see now that your testosterone levels are low. I have corrected my statement on http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788

Hi Nas,

  "Granulocyte" is just another name for "neutrophil". When neutrophil (granulocyte) levels are low and lymphocytes levels are normal, the "lymphocytes percentage" doesn't mean anything about lymphocytes levels. It just means that relative to (low) neutrophils, the lymphocytes seem high.

Hi Certainlypois2,

  Thanks for posting your complete blood count (CBC) test. I updated the POIS-Neutropenia chart with your info:

The above chart shows the prevalence of low neutrophil levels (neutropenia) for individuals in the United States of America (USA) according to ethnicity (Hispanic 0.38%, white 0.79%, black 4.5%) and individuals with POIS (60%) from this forum. The data for neutropenia in the USA was taken from "Prevalence of neutropenia in the U.S. population: age, sex, smoking status, and ethnic differences."

  The error bars (confidence intervals, sample errors) for the population samples were calculated using the population proportion estimate with a confidence interval of 90%. This means that we can be 90% confident that the real percent of POISers with neutropenia lies within those error bars. The previous error bars from the first chart was +-36%. The current error bar for our POIS data (with your data added) is +-25.4%. As more POISers post CBC test the error bars will decrease. I attached the Microsoft Excel file (neutropenia.xlsx) I used to calculate the chart. It does not contain macros or any scripted code, but it is always wise to use your preferred malware scanner when opening Microsoft Office documents. 

  More detained data from the neutropenia study cited above is shown here:

Hi All,

  In order to make more progress and potentially find out what the neutrophil data means, we will also need infection data (i.e. EBV, CMV, Mycoplasma Pneumoniae). I made a list of some potential patterns in the data here (http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788). Even if you don't believe POIS is caused by infection, you can still help us rule out possible causes and develop the necessary statistics by posting any infection data you have. Positive/abnormal and negative/normal test are all helpful and appreciated!

[Muon]

I will measure my neutrophil count again in the future and this time before and after an orgasm, perhaps there is a change to be observed despite being in the normal range.

[certainlypois2]

nanna, I forgot to mention i did semen desensitization for about two years.

[Muon]

@Simon66: Do you have postural intolerance, low blood pressure, tachycardia or autonomic dysfunctional related symptoms?

@aswinpras06: If they can't find the cause to your lung problems then perhaps they could look for inflammatory cytokines or your Th1/Th2 cytokine status. Mast cell mediators like prostaglandins is something they can test. High ECP is also associated with lung/asthma related symptoms.

[quotz]

I think we're making alot of progress when it comes to individual tests. There is a growing evidence that POISers are suffering from an over active immune system.
Certainlypois2 posted that he has high lymphocytes percentage but low granulocytes percentage. What can all that mean? It would be good if someone with knowledge in immunology can decipher possible reasons for such parameters in correlation with orgasm/ejaculation?

@Nas,

I also had high lymphocytes and low granulocytes. I went to a specialist haematologist and she told me it just means that you have some kind of either bacterial or virus infection. My GP also said this too. I also had done bunch of other tests which I am gonna upload soon.