Author Topic: Gather and Post Here Your Medical Tests Results - Discussion Thread  (Read 117325 times)

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #100 on: November 04, 2018, 08:25:48 AM »
Hi folks, Muon and HOD, It is quite interesting the information you shared with me...

I have been reading a little about what you say. And you are totally right. Symptoms are very similar to what my symptoms are.

I have also read this:

Lack of awareness (and even frank refusal to believe in the existence) of MCAS by many medical professionals is currently a hurdle to proper diagnosis. 

And this is just the problem I am facing. And suppose many of you also!

I am telling the different doctors I am visiting in my country about the suspicion I have with high histamine levels on blood since several months ago. Trying they ask me to do a test and check it. But until now they refuse to doing it!... It is so frustrating!!

I have also read this:
Laboratory evidence of mast cell mediator (elevated serum tryptase, N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others)

Too much possible things to test. Imagine if I had difficulties just to be able to check histamine levels ... what could be to prove all that list ....

Any idea on which of all these test would be best? Or which ones would have higher priority???

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #101 on: November 04, 2018, 11:44:31 AM »
Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #102 on: November 04, 2018, 01:41:46 PM »
Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.

What does WBC means?

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #103 on: November 04, 2018, 04:11:44 PM »
Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.

What does WBC means?

Whole Blood Count

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #104 on: November 04, 2018, 05:38:33 PM »
Potential treatment options; scroll down to the 'Treatment of mast cell activation diseases' section:
Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/

Quote button doesn't work. Fernab:''Any idea on which of all these test would be best? Or which ones would have higher priority???

No, but here are some numbers thrown around:

Determination of Plasma Heparin Level Improves Identification of Systemic Mast Cell Activation Disease:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124912

Definitions, Criteria and Global Classification of Mast Cell Disorders with Special Reference to Mast Cell Activation Syndromes: A Consensus Proposal
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224511/

Mast Cell Activation Syndrome: Proposed Diagnostic Criteria
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/

Clinical correlates of blood serotonin levels in patients with mastocytosis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3795418/

Here is a group of POTS patients with indication of mast cell disease. No tryptase has been found, low % N-methylhistamine but relatively high % for PGD2 metabolites:
Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome (P1.277)
http://n.neurology.org/content/84/14_Supplement/P1.277.short

Significance of Conversation between Mast Cells and Nerves
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/

Some organizations:
https://www.mastocytosis.ca/en/diagnosis/signs-symptoms
https://www.mastcellaction.org/

Also be aware of the terminology, MCA,MCAD,MCAS. MCAS can be primary or secondary, also there are different subtypes of mast cells and release mechanisms.

Hopeoneday:''When you look at the symptomes , it is similar to poisers:''

https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome#Symptoms

Yes indeed, and even if I lack a symptom from the list I can find a family member of mine who has this, for example I don't have red eyes but my mother does.

Nas:''Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.''

Can't help you. It's possible patients show different mast cell mediator profiles (if it has anything to do with mast cells in the first place though), if that's the case then finding a common denominator goes out of the window. It's a matter of keep testing things but the problem is that your doctor could lose trust in you if more and more results show up negative. The next step is that they will move the subject into the psychological realm. We are just in the explore phase of the disease. I personally have a whole list of things that I want to test and getting even one parameter tested is a problem, I just don't make any progress in this health care system, it's going too slow, too much bureaucracy and misunderstanding of the disease.
« Last Edit: November 04, 2018, 06:11:06 PM by Muon »

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #105 on: November 04, 2018, 06:33:35 PM »

Can't help you. It's possible patients show different mast cell mediator profiles (if it has anything to do with mast cells in the first place though), if that's the case then finding a common denominator goes out of the window. It's a matter of keep testing things but the problem is that your doctor could lose trust in you if more and more results show up negative. The next step is that they will move the subject into the psychological realm. We are just in the explore phase of the disease. I personally have a whole list of things that I want to test and getting even one parameter tested is a problem, I just don't make any progress in this health care system, it's going too slow, too much bureaucracy and misunderstanding of the disease.

I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #106 on: November 04, 2018, 06:52:47 PM »
I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.

My point was that it's possible there isn't 'that one' parameter. I can give you some suggestions but don't blame me if they turn out to be negative:
ECP, Serotonin, Tryptophan, IL-8, IL-17, Heparin, Chromogranin A, Th1/Th2, BDNF, 11-b-PGDF2a, Leukotrienes, MMP-2, MMP-9, N-methylhistamine, Lp-PLA2, VEGF, P-selectin. And you can try a bunch of things that other people have posted on this forum like catecholamine metabolites, lactoferrin, several hormones etc. Good luck, I'm also going in blind.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #107 on: November 04, 2018, 07:00:14 PM »
I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.

My point was that it's possible there isn't 'that one' parameter. I can give you some suggestions but don't blame me if they turn out to be negative:
ECP, Serotonin, Tryptophan, IL-8, IL-17, Heparin, Chromogranin A, Th1/Th2, BDNF, 11-b-PGDF2a, Leukotrienes, MMP-2, MMP-9, N-methylhistamine, Lp-PLA2, VEGF, P-selectin. And you can try a bunch of things that other people have posted on this forum like catecholamine metabolites, lactoferrin, several hormones etc. Good luck, I'm also going in blind.
Thank you, we should never give up, even if we gone demn bankrupt. We either win or perish.

Hopeoneday

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #108 on: November 04, 2018, 07:16:48 PM »
Frenab, when i say cronic lyme  disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!

Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html

Then, copare it to- CFS , ME, FMS...

So, cronic lyme, MCDS, CFS, FM   ---POIS.


« Last Edit: November 04, 2018, 07:25:17 PM by Hopeoneday »
Dr-pois.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #109 on: November 04, 2018, 07:39:39 PM »
By the way Nas when I mentioned Th1/Th2 it is not the ratio of the amount of cells but the relative activity of cytokine release:
https://www.imd-berlin.de/en/subject-information/diagnostics-information/th1th2-cytokine-balance.html

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #110 on: November 05, 2018, 08:05:50 AM »
Frenab, when i say cronic lyme  disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!

Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html

Then, copare it to- CFS , ME, FMS...

So, cronic lyme, MCDS, CFS, FM   ---POIS.

Hi HOD,

So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?

In my case, before a doctor told me in july 2017 for the first time that maybe my desease was POIS, I had been looking for any strange infection during 4 years before. I even went to specialists in infectious deseases. I have been tested against Borrelia. And resulted negative. I aked the specialist if it could be lyme disease. Yo a specialist in infectious deseases. And said me no. I even had been tested against Whipple desease. Also negative.

Maybe you are right and lyme disease was infra diagnosed, but here I have two questions....

First, it is possible yo have a confirmation that proves to be right 100% you don't have a lyme disease?....(you could always continue thinking you had a false negative in a test).

And second, can be a lyme disease triggered by a release? Or by the preseminal liquid presence?

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #111 on: November 05, 2018, 08:18:43 AM »
Potential treatment options; scroll down to the 'Treatment of mast cell activation diseases' section:

Thank you Moun for sharing all this interesting information.
I will read it.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #112 on: November 05, 2018, 12:58:21 PM »
No problem Fernab. Nas, in the past we theorized about how endothelial dysfunction could be involved and upregulation of angiopoietin-1 could be beneficial. Dexamethasone does this and had some effect for you. There could be other reasons why this helped you. When patients with MCAS don't respond to first line therapeutic options they switch over to steroids and some patients have good results with that, it's probably far fetched but mast cells might be involved. Second, Dexamethasone supresses production of ACTH. Some folks on this forum have elevated ACTH levels so you can think of getting that tested. It also affects prostaglandin synthesis (COX-2), so prostaglandins could be explored as well. I'm throwing in some ideas in here don't focus too much on them just keep them in mind.

Now to think of it, many years ago the sports medicine physician gave me an injection with steroids in my groin/leg area (can't find the english word for this area, in dutch it's 'lies') because I couldn't play soccer anymore due to problems with this area. It was a thick and long needle, never seen anything like it. He said it were two substances, I believe he said one of them was a steroid I have to look it up. After injection the 'injury' was completely reversed for 4 hours straight before it came back locally. I will call the hospital to ask if they still have this info in their archives, might be of interest.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #113 on: November 05, 2018, 03:56:56 PM »
No problem Fernab. Nas, in the past we theorized about how endothelial dysfunction could be involved and upregulation of angiopoietin-1 could be beneficial. Dexamethasone does this and had some effect for you. There could be other reasons why this helped you. When patients with MCAS don't respond to first line therapeutic options they switch over to steroids and some patients have good results with that, it's probably far fetched but mast cells might be involved. Second, Dexamethasone supresses production of ACTH. Some folks on this forum have elevated ACTH levels so you can think of getting that tested. It also affects prostaglandin synthesis (COX-2), so prostaglandins could be explored as well. I'm throwing in some ideas in here don't focus too much on them just keep them in mind.

Now to think of it, many years ago the sports medicine physician gave me an injection with steroids in my groin/leg area (can't find the english word for this area, in dutch it's 'lies') because I couldn't play soccer anymore due to problems with this area. It was a thick and long needle, never seen anything like it. He said it were two substances, I believe he said one of them was a steroid I have to look it up. After injection the 'injury' was completely reversed for 4 hours straight before it came back locally. I will call the hospital to ask if they still have this info in their archives, might be of interest.

Thanks for your suggestions Muon I will look into them. I think in my next visit I will smoke a cigarette and ask her for Mast Cell Syndrome indicating parameters. I'm not sure if my symptoms with cigarettes and my symptoms with POIS share the same mechanism but hopefully it can at least lead to something.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #114 on: November 05, 2018, 04:35:39 PM »
She probably will test for tryptase which has a high chance turning up negative for MCAS. Then she will draw the conclusion that mast cells are not involved. Your test shows increased mucus secretion: https://drive.google.com/open?id=1voKz6VVCs0umbO-G9ShNOGP5Qu9JTkn5

Check table 1 for mucus secretion, those are my best bets: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224511/
I would get POIS and smoke sigarets, be sure you get wrecked or do anything that triggers more mucus secretion. PGD2 is pretty unstable, 11-beta-PGF2alpha is more reliable.

You can also explore cytokines and chemokines: https://www.mastattack.org/mast-cell-mediators/
« Last Edit: November 05, 2018, 04:40:24 PM by Muon »

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #115 on: November 06, 2018, 10:42:52 AM »
The PGD2 metabolites (24h) results, 11-beta-PGF2alpha and tetranor-PGDM, came back normal. I haven't uploaded the results yet. I will draw blood for ECP this week and will probably receive the result for that in december.

Hopeoneday

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #116 on: November 06, 2018, 07:32:27 PM »
Frenab, when i say cronic lyme  disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!

Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html

Then, copare it to- CFS , ME, FMS...

So, cronic lyme, MCDS, CFS, FM   ---POIS.

Hi HOD,

So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?

In my case, before a doctor told me in july 2017 for the first time that maybe my desease was POIS, I had been looking for any strange infection during 4 years before. I even went to specialists in infectious deseases. I have been tested against Borrelia. And resulted negative. I aked the specialist if it could be lyme disease. Yo a specialist in infectious deseases. And said me no. I even had been tested against Whipple desease. Also negative.

Maybe you are right and lyme disease was infra diagnosed, but here I have two questions....

First, it is possible yo have a confirmation that proves to be right 100% you don't have a lyme disease?....(you could always continue thinking you had a false negative in a test).

And second, can be a lyme disease triggered by a release? Or by the preseminal liquid presence?

So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?

Yes-exactly this, i will post new tread soon with explanation, an then will be more understandable.

Can be trigered...? The big posibility that it can, after eyculation , in body becomes to hapen
exesive neuro hormonal changes, ewen on arosaul only, an if more factros disturb this proces,
some poisers with cronic lyme , some MTHFR(thats why help some poisers), some with viruses,
from all that = imunocompromised ,you hawe pois, cfg, me,, fm, mcds...................

I was tick byted in testicle when i was a kid. Symptomes all my life always leed me to lyme disiese.
Did western blort, elisaa.... all negative. BUTT! Me also didnt know the info that cronic late stage
of lyme disiese cant be diagnosed by todeys medicines in big mayority of cases.
Yust simply cant!  Again : hear carifuly  again - unfrortinytly the testings are wery porr, its are
unadequate to indetify ACTIVE INFECTIN.
Repeat-1min.30sec
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM

Some stuf we dicusing here is well known, 20, 30 years before. And here we resarching to help us.
Nothing new, yust finding tretmants we" cant gets from doctors".

You will see it i will post soon treatmants, some of them are pooled by me-like virus teory
and some members fwew days after that maked treeds like-virus induced pois etc-
And when i dig tru this forum, it is not me that i mention virus teory first(this not mater at all
, the meter is that we found working solutions for us)i found that mebers before mentioned this teory
, and wagus nerwe teory infection etc.


And not all poisers hawe cronic lyme, thouse who hawe it , we are fukbllbjhed ewan more,
WERY DIFICULT TO TREAT!

Sory for wrong splelling, i hawe brain fog, did modified this post 817 times to corect mistakes.




« Last Edit: November 06, 2018, 09:15:24 PM by Hopeoneday »
Dr-pois.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #117 on: November 07, 2018, 11:06:52 AM »
Yesterday the GP's assistent told me the results were normal but I didn't get to see the values for myself, so I made a post that everything was normal. However, the results are not completely normal, there is an anomaly. I guess the assistant was sleeping. Click here. I was on the brink of abandoning the involvement of mast cell activation but now I'm not sure, this is tricky.

This test is done at the end of the summer. I was in a far more worse state during mid summer though, wish I had done it at that point (or in 2013 (crisis year) or before desensitization).

So I wanted to get my blood drawn today at the GP's office for ECP. There was no lab available in the region so it couldn't be done. They gave me 3 forms for 3 different time points (if you have suggestions at what time I should do the test then tell me). I need to go look for another hospital outside this region, this will take time. I also need to play it more tactical without dropping the word ejaculation.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #118 on: November 07, 2018, 06:22:49 PM »
So just a little update.
I think my doctor has given up because she does not know how to move on from there and she leans towards that what I have is just psychological.
So I guess I'm going with this alone... Again. She will help in doing tests and giving me medical advice, so here's that.
I asked her that I would smoke a cigarette then make CBC. But she doesn't believe that it'll show anything, she says that if I had anything it would've appeared in the previous WBC test, but everything turned out normal. I asked her about th1/th2 test but it's not available in my province.
I did the test and it will be sent to me tomorrow, I wish something abnormal would appear but probably not. I feel in order to accurately test POIS we need a nuanced test before orgasm and after orgasm that shows the complete immunological activity that is taking place in our body. I don't think that this available where I live.
Anyways, I think that's it for me, for now.
I'll ask her about ACTH.
« Last Edit: November 07, 2018, 06:30:47 PM by Nas »

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #119 on: November 07, 2018, 06:33:18 PM »
Yesterday the GP's assistent told me the results were normal but I didn't get to see the values for myself, so I made a post that everything was normal. However, the results are not completely normal, there is an anomaly. I guess the assistant was sleeping. Click here. I was on the brink of abandoning the involvement of mast cell activation but now I'm not sure, this is tricky.

This test is done at the end of the summer. I was in a far more worse state during mid summer though, wish I had done it at that point (or in 2013 (crisis year) or before desensitization).

So I wanted to get my blood drawn today at the GP's office for ECP. There was no lab available in the region so it couldn't be done. They gave me 3 forms for 3 different time points (if you have suggestions at what time I should do the test then tell me). I need to go look for another hospital outside this region, this will take time. I also need to play it more tactical without dropping the word ejaculation.
Were you on POIS when you did this test Muon? I believe we should always do our test when we are on POIS. Even my urethral inflammation actually gets better with time. My last urine sample showed only 33 scale of mucus and it was only four day after ejaculation.