Gather and Post Here Your Medical Tests Results - Discussion Thread

[Muon]

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]

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]

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!

[Nas]

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]

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!

[Vandemolen]

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.

[fernab]

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]

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.

[Muon]

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.

[Vandemolen]

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

[Muon]

The person from the link you gave us went to the same hospital as you did.

[Vandemolen]

Yes if you scroll back at page 3 of that topic you can see that he says that he has a lot of infections. Maybe he has POIS, but he does not know it?

[fernab]

Could be that. I will talk about those anti-PNECs to the neurologist I am visiting... Just to check about these values on my own as well.

[Muon]

Yes if you scroll back at page 3 of that topic you can see that he says that he has a lot of infections. Maybe he has POIS, but he does not know it?

Or this is related to an infection and you are the only one having this issue. To be sure of this we need to test it in more patients. How do I get these parameters tested? Could you ask your immunologist if he wants to see another POIS patients that want to get tested for this parameter to rule out a link with POIS?

[Vandemolen]

Last summer I had this for two weeks. It stopped when I took 3 days of antibiotics. Before I got sick I took antibiotics for 3 weeks. I felt cold even it was summer. So I thought about UTI. After taking antibiotics for 3 days I read about candida. So I stopped. After a week I stopped it went away. The current episode of 5 months was after sexual activity. First the POIS came in. Some symptoms never went away.

I want to wait what the diagnose is first. If there is a small chance that it is POIS related I will ask him.

[fernab]

Vandemolen,

What are your symptoms?

I am sick since 12 months ago and in my case is POIS related...

Can't seat, can't stand up for too much time, and having lot of dificulties to lay down on bed. Can't flex the lumbar vertebrae. Pain on knees and back at the level of several vertebrae when standing up for some time.... Really difficult situation also. My work is at risk to be loosed. Hope to find any solution as soon as posible. Need it.

Wish you as much luck as posible!

[fernab]

By the way.... When I began with POIS in a strong manner. I had also cold in summer even with shaking chills. But it has not happened to me for a long time. I am in abstinence since 7 months ago. But any arousal gets me in a worse situation. For sleeping, laying down on bed and for standing up.

In my case I know It is about POIS.

[Nas]

By the way.... When I began with POIS in a strong manner. I had also cold in summer even with shaking chills. But it has not happened to me for a long time. I am in abstinence since 7 months ago. But any arousal gets me in a worse situation. For sleeping, laying down on bed and for standing up.

In my case I know It is about POIS.

I think we should make a complete MRI to the genitourinary tract including different sex glands to look for signs of inflammation. This should be done after sufficient levels of arousal and onset of symptoms. One of these glands should be inflammaed, if the auto-immune theory holds true.

[Vandemolen]

Vandemolen,

What are your symptoms?

I am sick since 12 months ago and in my case is POIS related...

Can't seat, can't stand up for too much time, and having lot of dificulties to lay down on bed. Can't flex the lumbar vertebrae. Pain on knees and back at the level of several vertebrae when standing up for some time.... Really difficult situation also. My work is at risk to be loosed. Hope to find any solution as soon as posible. Need it.

Wish you as much luck as posible!

How do you know your symptoms are POIS related when you are in abstince for 7 months? I am in abstince since 5 months. I got sick after sexual activity and never get better. I get hot flushes and chills. Because of the flushes I have an itchy skin, red dots and acne.

The hot flushes appear when:
1. I am sitting in the bench for 10 minutes. For example when watching tv. When the flush comes and I stand up or lean forward with my back not on the bench or a pillow the flush goes away. But after the flush I get chills.
2. When I am driving for more than 20 minutes. Even when it is not hot outside.
3. When I sleep. Normally I sleep on my side or belly. But maybe when in sleep I am laying on my back for a period. I have sleeping problems. Hard to fall asleep. And I wake up after 4 or 5 hours. After that I can not fall asleep again.
4. After taking a hot shower. When I take a lukewarm shower I get less symptoms.
5. After sports. Or even when I walk for 30 minutes.

Thanks! I whish you all the best too.

[Muon]

Neuropeptides can cause flushing and itching.