Gather and Post Here Your Medical Tests Results - Discussion Thread

[Muon]

Were you on POIS when you did this test Muon?

Yes and I skipped the first urination after ejaculation because I did not want to contaminate the urine sample with sperm leftovers. Perhaps if I include that one the value could be higher because being closer the trigger and maybe that bit of volume is higher in concentration then the consecutive urinations. Will add some details later in the info.txt file.

[Nas]

Were you on POIS when you did this test Muon?

Yes and I skipped the first urination after ejaculation because I did not want to contaminate the urine sample with sperm leftovers. Perhaps if I include that one the value could be higher because being closer the trigger and maybe that bit of volume is higher in concentration then the consecutive urinations. Will add some details later in the info.txt file.

So they should've been elevated if there was a COX1 or 2 activity, right? 
Sorry the science of this stuff is too deep for me.
This site: https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/37931
Cites that "Elevated levels of serum tryptase, urinary N-methylhistamine (NMH), 2,3-dinor-11beta-prostaglandin F2 alpha (2,3 BPG), or leukotriene E4 (LTE4) are consistent with the diagnosis of systemic mast cell disease."
Wanna test tryptase, N-methylhistamine  and leukotriene E4 next?

[fernab]

Thank you HOD for the information. Maybe what you are supposing about chronic lyme disease is un some cases true. Even un my own case.

But I then wonder if it is possible to know for sure if someone is not infected by any bacteria causing lyme disease?

I was tested for Borrelia burgdorferi (one of the many Borrelia group of bacteria). And resulted negative by serology (IgG and IgM). As far as I know, I was never bitten by a tick. But still I can not be 100% sure that lyme disease could not be what causes me POIS. Until there is something that proves otherwise.

That's why I'm wondering if there is any test that lets you know for sure that you do not have lyme disease.

Muon, hope this anomalie you found on your tests leads yo something interesting.

Nas, Although my case is (I think) something different from yours, the difficulty you are living is identical to mine and I guess that of many others in this forum. But we can not give up. I think it's a matter of time and continue to have ideas like the ones we're looking for. And try to find some way to alleviate the problem. It is also important. in my case for now it is the use of anti-inflammatory and abstinence. Since I am in a very difficult situation. for now the anti-inflammatory (etoricoxib) is the only thing that keeps me afloat. Although for now I can not get out of the difficult situation. I can only send you a message of encouragement and that we are many looking for a good solution to this horrible situation. Never give up!

[Muon]

Nas, N-methylhistamine and tryptase have been checked and being normal (I have uploaded NMH see file 5-1). Tryptase has been tested before and after ejaculation. Leukotrienes haven't been tested and I could do that in the future.

Muon, hope this anomalie you found on your tests leads yo something interesting.

I don't think so to be honest, this info will rot away on POIScenter and there are only a few labs in the world where you able to test this. So I don't think people will check this parameter for themselves and doctors aren't willing/capable to investigate any abnormal parameter that has been found so far let alone this one.

[Nas]

I don't think so to be honest, this info will rot away on POIScenter and there are only a few labs in the world where you able to test this. So I don't think people will check this parameter for themselves and doctors aren't willing/capable to investigate any abnormal parameter that has been found so far let alone this one.

That's kinda too pessimistic Muon, you should definitely go to an immunologist and ask him to investigate your Mast Cell situation further. Show him your tests and see where you go from this.

[fernab]

I was with an immunologist in my country. in Europe. A few months ago I told my immunologist that I had a suspicion that histamine might be related in some way to POIS. and he did not show any interest in that topic. I do not know if it's because he does not know that area well (perhaps more usual for an allergist) or that a doctor simply does not like you to tell him what to do. It must possibly be wrong for you to invade their land. It has to be the one that determines, by itself that you have to look at this or that. If you go to tell him what you think could come well to look or check, it seems that he feels uncomfortable because he feels that you invade his land, and possibly think. but who the hell do you think it is you to tell me what I should or should not do? I think that in general they do not like that you get into their domain. the doctors do not usually receive well that you try to give them indications of what to do. It is not their way of working. and I think that's a big problem. even though you were right. They do not usually take it into account. They usually consider that you get into their role and invade their work.

I am really interested un those cases Muon told me about patients who had problems laying down on bed or wearing tight clothes. Because this is exactly what is happenning to me. Till now, I was able to control it by taking a potent and efficient NSAID (etoricoxib). But don't know why, I am slowly loosing control. And every time I can spend less time lying in bed. So, if I continue this way.... I guess I will have a big problem. It is necessary to lay down on bed to sleep.

and as I continue like this on this road I will end up not being able to do it and I will end badly. and it worries me a lot, really. and the worst thing is that I see that nobody realizes that this can end up happening to me. because another thing that I see happening is that doctors do not like to anticipate what you tell them that could end up happening. They directly treat or try to treat a problem when they clearly see what is happening. but they need them on their own account to see in the result of some proof that this situation is actually happening. Before seeing it, they do not consider doing anything.

They are driven by your symptoms if they are able to extract any test result. But seems that this is exactly the problem. They just don't get to see any inflamation biomarker or any clue to be able to help you. That's the biggest problem.

[Nas]

I was with an immunologist in my country. in Europe. A few months ago I told my immunologist that I had a suspicion that histamine might be related in some way to POIS. and he did not show any interest in that topic. I do not know if it's because he does not know that area well (perhaps more usual for an allergist) or that a doctor simply does not like you to tell him what to do. It must possibly be wrong for you to invade their land. It has to be the one that determines, by itself that you have to look at this or that. If you go to tell him what you think could come well to look or check, it seems that he feels uncomfortable because he feels that you invade his land, and possibly think. but who the hell do you think it is you to tell me what I should or should not do? I think that in general they do not like that you get into their domain. the doctors do not usually receive well that you try to give them indications of what to do. It is not their way of working. and I think that's a big problem. even though you were right. They do not usually take it into account. They usually consider that you get into their role and invade their work.

I am really interested un those cases Muon told me about patients who had problems laying down on bed or wearing tight clothes. Because this is exactly what is happenning to me. Till now, I was able to control it by taking a potent and efficient NSAID (etoricoxib). But don't know why, I am slowly loosing control. And every time I can spend less time lying in bed. So, if I continue this way.... I guess I will have a big problem. It is necessary to lay down on bed to sleep.

and as I continue like this on this road I will end up not being able to do it and I will end badly. and it worries me a lot, really. and the worst thing is that I see that nobody realizes that this can end up happening to me. because another thing that I see happening is that doctors do not like to anticipate what you tell them that could end up happening. They directly treat or try to treat a problem when they clearly see what is happening. but they need them on their own account to see in the result of some proof that this situation is actually happening. Before seeing it, they do not consider doing anything.

They are driven by your symptoms if they are able to extract any test result. But seems that this is exactly the problem. They just don't get to see any inflamation biomarker or any clue to be able to help you. That's the biggest problem.

That's true Ferbab, we need to be tactical in the way we talk to doctors, we shouldn't say that we have POIS outright. We should give them the long story in hopes of them understanding the situation we are in.
Muon's elevated PGDF should be a much more concrete parameter for the immunologist to move on from there.
The problem with doctors is that they have no idea how to deal with this illness since they don't have quite the experience with it. That's why we need to progress with figuring out about this illness our selves. But obviously there needs to be a point where a professional steps in and engineers a treatment. If POIS truly was a case of Mast Cell Syndrome then I believe doctors are able to deal with this illness based on MCAS treatment protocols.

[Nas]

My CBC came. It's completely normal. I don't feel like uploading the results since it's really similar to the one before it.
At this point I don't think that CBC is a proper diagnosis for POIS especially if we have Mast Cell Activation Syndrome, the white blood cells count can be completely normal and the immune reaction would still occur. MCAS is very tricky to diagnose and it requires more nuanced testing. 

[Hopeoneday]

Yeah NAS , unfortyniy that is the way its, Fernab you are wright about  doc aproach, when i mention
all that syptomes i hawe from MCDS list, and mention POIS, i am redy to go in" lunitic, carzy people house".
I can be in such a anaplaxes episodes (in wiki read), that i can bayrly suvive.

[Hopeoneday]

What is always intresting to me,  when i resarching this tematic, that alwas lead to tick byte or some sort of
infection.
See on wiki MCDS an down there you will see reed this -histamine intolerance- because is related to MCDS,
https://en.wikipedia.org/wiki/Histamine_intolerance  an then it lead you to Mast cels and bashophils,
Basophils can be fond in usualy high lewels in ectoparasite infection in that tisue , e.g ticks .
https://en.wikipedia.org/wiki/Basophil#Function

[fernab]

Hi HOD,

I read the 2 links you posted. Histamine intolerance was something that a dentist told me some months ago. And that in some cases an enzyme called DAO may be present in less than normal amounts. This enzyme is responsible of histamine metabolization. So, if your DAO levels are low. It can happen your histamine levels are too hi on blood. Causing a lot of symptoms.

When you say MCDS, you mean Mast Cell Activation Syndrome?

Mast cells and basophils have a lot of similarities. But seems they are different.

the more I read the more I realize the complexity that all this has. There are many possibilities for searching and testing. to go in the right direction. It is necessary to go step by step. and I think the help of professional people is necessary. It is so complex that it is also very easy to make mistakes or not to notice any details. or see only part of the problem and not everything as a whole. that is why, apart from trying to find a solution, contributing ideas. I think that something can also be done, giving visibility to the problem. so that each time you hear more. and little by little, it is becoming more and more important in the medical society. I have read in GARD that the number of poisers in social networks is growing. and also that it is an underdiagnosed disease. Demo has recently informed us that NORD will communicate to the person assigned the fund to investigate POIS by the end of the year. there is also the investigation of la_petit_mort. some things are starting to move. I, for my part, try to make it known to all the doctors I see. and I have signed up on the official list of rare diseases in my country. that is to say, I also try to find some solution and explanation to POIS. also move things around all possible ways to make it known and that has the widest possible dissemination. since in some way that also benefits us. I suppose that is the way to call the attention of professionals who someday investigate it and really help us. since I think it's quite complex.

[Hopeoneday]

Yes mcas.

This girl also had similar story, all began in first in her gut.
https://www.raredisease.org.uk/news-event/my-journey-to-a-mast-cell-activation-syndrome-diagnosis/
Helped by leukotrine inhibitors.
Intrestly, those are treatmants for astma.

[Muon]

MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/

Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true

MCAS genetics
https://vimeo.com/142039306

[Nas]

MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/

Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true

MCAS genetics
https://vimeo.com/142039306

My WBC came completely normal even after smoking a cigarette ( which causes me POIS symptoms ) and suffering from great symptoms. This tells me that what ever immune reaction I'm having is related more to mediators release than blood cells count.
I'm currently taking Fexofenadine 120 and Montelukast 10mg every day, as my doctor recommended for about a week. We'll see where that'll get me. I told her that I want to completely suppress the Mast Cell activity by taking Cox inhibitors and Mast Cell stabilizers, but she said that Montelukast should be enough. We'll see. 

[Muon]

MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/

Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true

MCAS genetics
https://vimeo.com/142039306

My WBC came completely normal even after smoking a cigarette ( which causes me POIS symptoms ) and suffering from great symptoms. This tells me that what ever immune reaction I'm having is related more to mediators release than blood cells count.
I'm currently taking Fexofenadine 120 and Montelukast 10mg every day, as my doctor recommended for about a week. We'll see where that'll get me. I told her that I want to completely suppress the Mast Cell activity by taking Cox inhibitors and Mast Cell stabilizers, but she said that Montelukast should be enough. We'll see.

That's what I meant earlier with there might not be a common denominator as far as parameters go. Mast cells could release mediator profile X in person A en profile Y in B while the location of release might be the same affecting the same system. That same system might be affected in a different way because different mediators can act on different receptors. As a result you may see different lab results for patients with the similar complaints. Then you might ask yourself whether these mast cell are releasing the same type molecules every single time? POIS might be a symptom of MCAS (I'm absolutely not sure about this let this be clear). Watch the video, he mentions about this symptomatology for families without elevated tryptase but research into these particulier patients is rare. Also keep in mind that there aren't many tests available for most of these mediators, and most of them aren't specific for mast cells.

He also tells you there isn't a silver bullet, this tells me different mediators could be released for different patients needing different medication. It's a trial and error process which is individualized at this point in time. If I look at my own case symptoms might trigger all over the place but not in a explosive manner like these mastocytosis guys and gals. It's difficult to talk about it with doctors it's like talking against a wall (I actually have given up on this because most can't look at the complete picture or are too much time restraint, it's a multi disciplinary issue as far as symptoms go), my symptom picture as a whole is complex and making this clear to a doctor is very hard (just try this while you have cognitive symptoms, racing mind, speech problems and symptom complexitiy within a short amount of time....good luck).

[fernab]

I have viewed this vídeo online YouTube...

https://www.youtube.com/watch?v=JdbkviPUmg4

There exist especialists for MCAS as Mariana Castells seems to be. I had sent an email to another specialist in my country. Hope he answer anything to me. I think the diagnosis of MCAS seems to be very dificult. In the video I posted, Mariana tells that maybe between 6 and 12 months may be necessary.

I will try to contact a specialist on MCAS un my country.
Will tell you if any result.

[Nas]

So I've been on montelukast 10mg for four days with Fxofenadine 120mg before sleep. I took one and after an hour and a half I masturbated. I also took pirocicam 20mg before 15 minutrs just in case. Overall I feel way less physical symptoms; when it comes to blood pressure and fatigue for example. I also feel less physical pain. When it comes to cognitive symptoms I still got them but they are not as bad as I expected. I was still suffering from cognitive symptoms like difficulty speaking and memory problems but my concentration problema were good and brain fog is less severe. Overall there is ~25% reduction. But that's not really that huge and I still need improvement.
I will also see if this effect continues or it's just placebo.
I also urinated after ejaculation so that also could be a factor.

[Muon]

I've contacted a MCAS related academic but got no response so far. By the way it might be interesting to do the 11b-PGF2a test again but this time for blood plasma close to ejaculation. In allergic diseases and asthma this plasma value might peak within 2 hours after exposure of a trigger/allergen. A few days ago POIS gave me a tight feeling in certain parts of my body along an elongated line, I don't think these were muscle groups. It might have been local vasoconstriction. In which country are you located Fernab?

[fernab]

Hi, I asked an specialist on mastocitosis in my country hoping he also knew about MCAS since it is also a type of mast cell activation disorder. He aswered me by email. He told me that due to reasons unrelated to him, he had to abandon medicine.

But he has told me about another Doctor who was working with him. Maybe next days, I will be able to contact her. I do not know if she will also have some knowledge as advanced as the Dr who unfortunately has referred me to her. But I will try.

Hi Muon, let me tell you your question by a PM. Ok?

[Muon]

Interesting video. Many things discussed on this forum is being packed into this video. Hormone/brain mast cell interaction, lyme, stress, temperature, diurnal rythms, infection (bacteria/mucus, viral, mold), gut, diet, blood-brain barrier, methylation, behaviour, inflammation, cytokines, reactions to supplements, diagnostic tests, triggers, desensitization etc.
For discussion about treatment options skip to 1:30:00 Episode #58: Mast Cell Master with Dr. T.C. Theoharides, PhD, MD:
https://www.youtube.com/watch?v=6gfTFwJgIVQ