Post Orgasmic Illness Syndrome (P.O.I.S.)
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| | |-+  Gather and Post Here Your Medical Tests Results - Discussion Thread
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: Gather and Post Here Your Medical Tests Results - Discussion Thread  ( 25432 )
nanna1
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« #315 : March 11, 2019, 07:35:49 PM »

I already have posted my Natural Killer test results in the following link (post #53 of resulta thread).

https://poiscenter.com/forums/index.php?topic=2684.45
Thanks fernab!

POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/
Muon
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« #316 : March 14, 2019, 01:40:12 PM »

Hi Muon,

My hydroxyprogesterone 17-alpha was:

1.49 ng/mL  (Normal range: 0.63 - 2.15)

what is this particular hormone? Why do you ask about it??
It metabolizes into cortisol. Elevated levels could mean high cortisol levels.

Quote from: fernab
He has asked me to do a 24-hour urine and blood tests to get the tryptase level and other biomarkers.
Is 11-b-PGF2a included?
fernab
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« #317 : March 18, 2019, 07:52:25 AM »

Hi Muon,

The real specialty of the Dr who is taking care of my possible case of MCAS is pediatric allergologist.
This Dr is a good colleague of another Dr who was a very good expert a few years ago on all the Mastocitosis desorders. In fact, there was a time when they were working together and that is why this pediatric allergologist was trained in this type of Disorders.

I reached to talk by phone with the Dr who was a good expert on these desorders (now he's retired since a few years ago). And he recommended me to visit his colleague for now (the pediatric allergologist).

This experienced Dr with whom I spoke by phone worked closely and collaboratively with Dr. Mariana Castells of Harvard Medical School.

This pediatric allergologist has the ability to refer me to another hospital not too far away in which they do devote themselves as part of their work to mast cell disorders. In this other hospital they are real experts on Mast Cells Disorders.

So, for now I must follow his instructions. I think he wants to try everything he can. Before redirecting me directly to the other hospital.

When the time comes I will ask him to refer me to the other hospital.
I think that in the hospital where I am going for now (to visit this pediatric allergologist), they do not have the proper techniques to detect the appropriate biomarkers for an MCAS. For instance, N-metyl-Histamine. Or the one you are asking me (11-b-PGF2a). Detected in a 24h urine test.

For the moment he is trying to find any relevant data with my levels of triptase at different moments (in blood). And other biomarkers such as catecholamines, metanephrines and 5hiaa on 24h urine tests.

Will continue updating...
Muon
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« #318 : March 18, 2019, 08:39:43 AM »

24h urine catecholamines and 5HIAA are interesting parameters as well. If all of them are negative he probably won't refer you to the mast cell specialised hospital but we will see. Have you told him about POIS yet? If not will you mention it eventually? Thanks for the updates.
fernab
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« #319 : March 18, 2019, 08:51:17 AM »

Yes you are right Muon.

Maybe It depends on the results he will refer me or not.

At first I don't wanted to talk him about POIS. Just to let him focus on MCAS. He read a report of my GP comparing POIS to MCAS. But he obviously did not showed to know anything about POIS. Since he thought the report was trying to compare MCAS with POTS instead of POIS.

If It finally turns out that he don't want to refer me to the other hospital. I will tell him about POIS and the possible relathionship with MCAS as a final resource....

We will see how this evolves....

Will continue updating.
Muon
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« #320 : March 18, 2019, 09:06:10 AM »

I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
fernab
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« #321 : March 18, 2019, 09:36:59 AM »

I agree. Something I learned after going to many Drs is that they don't like to feel you know anything better than them. In general they like to have things under their control. So, I decided some time ago to be very cautious about what to tell and what not. To filter the information appropriately. And let them feel everything is under their control. And to take advantage of any moment he is in doubt or when he is arriving to the point where he about to say 'I don't know what else to do with you'.... I try to let him know all that I know until now. At this point, as you say Muon. It Will depend on how much open minded he is. Or if he is near or not to the research world.... I prefer to let him fisrt to do what he wants... Drs as Tierney Lorenz or Nicole Prause would be perfect candidates to visit as they are un direct contact with the research world. And thus, I think totally open minded to any posibility.... Is not easy at all. But we need to think positively and fight POIS till the end....
Nas
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« #322 : March 18, 2019, 11:00:16 AM »

For the moment he is trying to find any relevant data with my levels of triptase at different moments (in blood). And other biomarkers such as catecholamines, metanephrines and 5hiaa on 24h urine tests.
Will be very interesting to see these bio-markers. I think your Dr is on the right track. I do agree with your methodology of filtering the information as much as you can. I've recently come to the realization that neither MCAS nor catecholamines depletion is the cause of my POIS because of the failure of treatment to these issues. But we'll see what your tests will show. Hopefully a bio-marker would catch the interest of your Dr. Good luck until then Fernab!
« : March 18, 2019, 11:02:10 AM Nas »
Nas
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« #323 : March 18, 2019, 11:04:47 AM »

I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
Did you tell him that you have POIS or that you were a subject of Waldinger's research on POIS? Because I think the latter would be less offensive-ish than the former.
demografx
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« #324 : March 18, 2019, 11:58:45 AM »

I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
I’ve gotten to the point in my ripe old age where I just don’t trust *any* doctor to be openminded about POIS. I just keep my mouth shut. Sad, isn’t it? But if anyone else is brave enough, my hat’s off to ya!

10 years of major POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks associated with it.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business.
Vandemolen
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« #325 : March 21, 2019, 10:13:22 AM »

Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.
« : March 21, 2019, 11:05:34 AM Vandemolen »

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
fernab
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« #326 : March 21, 2019, 10:36:21 AM »

Hi Vandemolen,

Try to not panic. Talk first with your Doctors. Maybe more than one of us have also the same problem.

I am increasingly convinced that the nervous system is closely related to POIS. whether they are neurotransmitters. neurohormones, hormones .... receptors .... mast cells are cells of the neuroimmune system .... that is, common to the immune and nervous system ...

Try to not panic.... I know It is easy to say. But think about the posibility it is not allways linked to any tumor....
Vandemolen
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« #327 : March 21, 2019, 11:04:51 AM »

Thanks Fernab. Yes you are right. It is just that I am sick now for 5 months, so I am looking for a cause. But it was not smart to check the blood results online before talking to the doctor.

POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
Muon
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« #328 : March 21, 2019, 11:08:35 AM »

I can't find any well written info about anti-PNECS on the internet. What are these? Are these antibodies against Pulmonary neuroendocrine cells? It's funny we had a discussion via PM about sensory nerves fibres and receptors in POIS, these cells are actually linked to that. These cells are a bridge between the Nervous system and endocrine system if I'm not mistaken. They also release neuropeptides. Interesting stuff. The wide array of symptoms involved seem to make more sense now if you take these cells into account. Perhaps I should make an appointment with your immunologist as well to check if I got the same issue. We need to check whether this is related to POIS by testing this in more patients.
« : March 21, 2019, 01:08:35 PM Muon »
Vandemolen
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« #329 : March 21, 2019, 11:17:19 AM »

Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.

The link to a guy who had low anti-PNECS. After 2 vaccins his anti-PNECS rised. He did the test because he has CFS.

In Dutch:

https://www.me-gids.net/index.php?name=PNphpBB2&file=viewtopic&t=8324&postdays=0&postorder=asc&highlight=Pnecs&start=45


POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.
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