Gather and Post Here Your Medical Tests Results - Discussion Thread

[Observer]

Forum members would be able to discuss the medical results of the official thread here:

https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787

In this way, we keep clear the other thread. So, from now, there will be two separate threads.

1- The official thread of Results - Gather and Post Here Your Medical Tests Results - Only medical results will be posted, no discussion will be allowed.
2- This thread  - Gather and Post Here Your Medical Tests Results - Discussion  Thread It will only contain discussions about the results shown in the first thread. Needless to say, you can always use the results shown in the first thread to make your point in any other thread!

Thanks for your participation!

[Hopeoneday]

Hi observer, could you stick to this tread or new treed this idea-

Put here your sugesstions whot to test next  <--------trad name for exemple

My english is not so good but my idea is to make treead where people will sugest whot test should be done -(whot to ask doctors to test), tests in private labs clinics etc...(incuding all genetics etc).
I know the whole concept of this forum is actualy the same , but suggestions in one tread will maybe be more focused, and lately will be esier to compare and leadnig to some rasults.

[Observer]

Observer, you’re so organized! ...Are you sure you have POIS???

Hahaha, thanks for your words!

Hi observer, could you stick to this tread or new treed this idea-

Put here your sugesstions whot to test next  <--------trad name for exemple

My english is not so good but my idea is to make treead where people will sugest whot test should be done -(whot to ask doctors to test), tests in private labs clinics etc...(incuding all genetics etc).
I know the whole concept of this forum is actualy the same , but suggestions in one tread will maybe be more focused, and lately will be esier to compare and leadnig to some rasults.

Hello hopeoneday, I think it is an interesting idea. I don't know if the best option is to open another thread or keep here the discussion. Let's see what other mods have to say. My idea is to leave the other thread only for medical results. In this way, it would be easier for researchers (Especially the one who accepts the RFP, don't forget to contact your GP, doctors, universities, etc) to see the actual data.

If someone has done a previous test (and has shared the results with the forum before), let us know! I am trying to find more analysis by surfing the forum, but it is complicated.

[Nas]

Ok,
So please if anyone has the ability or knows someone who can read my EGG scan test result and pinpoint where do I show signs ( or perhaps don't ) of brain inflammation that'd be great!

[Muon]

The medical community in general doesn't care about your data Nas. They have enough patients to generate money why bother with difficult cases like yours. There probably aren't any poiscenter members present which can read that data. You are extremely lucky if a specialist looks into it but it won't happen. I think you should lower your expectations. 

[Observer]

THANK YOU OBSERVER

this is very worth to share our blood tests or other physical or electrophisical  results (EEG , QEEG , EMG , ECG , EOG , )or  imaging(CT , MRI , FMRI, PET , SPECT , GAMA CAMERA  ) ,  GENETIC results and so on .... we can only get the success with NUMBERS i think . there will be not miracle happen unless we can see the differences that is based on  numbers or values .

 

[demografx]

Observer, you’re so organized! ...Are you sure you have POIS???

Hahaha, thanks for your words!
 

Not just words: sentiments

[Nas]

The medical community in general doesn't care about your data Nas. They have enough patients to generate money why bother with difficult cases like yours. There probably aren't any poiscenter members present which can read that data. You are extremely lucky if a specialist looks into it but it won't happen. I think you should lower your expectations.

Moun, all I'm asking is for someone to read the demn thing, if no one here knows how to read it it's ok, but I'm trying because if someone would actually pin-point that I have brain inflammation then that would save me alot of money and time trying to convince the doctor that I have brain inflammation.
I'm not trying to ask anyone to solve POIS, all I'm asking is that a paper that has some grahps to be read and then confirm if I have anything at all.
I'm not the first asshole to get brain inflammation from what ever reason, if a neurologist can't fix brain inflammation then IDK why the fuck is he a neurologist in the first place.
I don't have expectations, I'm not asking for people to solve my POIS, all I'm asking is for people to READ my fucking paper.

[Muon]

It's highly unlikely Nas. Even if a researcher is reading this they probably will not get into contact with you or with other people who have posted results to tell you their analysis. The medical test results could give researchers ideas about POIS and use it for their future research. It also gives patients something to check out for themselves, post their data on the thread as well, compare it with the rest and find a common denominator. And one thing I have learned so far is that most doctors have zero creativity, they have trouble thinking outside their standard algorithms and tackle new stuff. Combine that with the rarity of this disease, the nature of the symptoms, the bureaucracy and the corporate character of the health care system nowadays and chances are very slim you will get an answer. I do understand your frustration though, I'm in the same position.

[Nas]

Muon,
You don't get me, I'm not asking the doctor or anyone to treat POIS, 1- I'm sure this graph is not that hard to read if you have knowlege about the subject, if not, that's fine I'm not begging. 2- I do understand your fraustration with doctors and what not, but I personally learned that we shouldn't go to doctors and ask them for a POIS treatment, rather we should ask them to deal with our POIS symptoms that mostly annoy us, like brain inflammation for example.

I learned through out my experiance with POIS to not have expectations only action, and while doctors are not going to fix us, we should fix our selves, and that's what I'm trying to do.

I honestly don't understand your negative tone about the graph. Or this existential dread that made you bring this subject up. I fully realise what your saying muon but I have no choice but to take action, it's not like this is a minor syndrom that I have to deal with the rest of my life. This is a life ruiner and witheach orgasm I feel my cognitive symptoms are getting worse and my brain is swelling inside of my head without me doing anything about it.

[Muon]

Oh I'm sorry Nas I didn't mean it in a negative way. Perhaps I misunderstood, forget what I have said then. Quite a pointless discussion from my side anyway.

[Hopeoneday]

Sexual hormones      
 E2 (pg/mL)   86.98∗   0?39.8
 Prolactin (ng/mL)   1.09∗   2.1?17.7
 Testosterone (ng/dL)   10.49∗   241?827
 LH (mIU/mL)   8.03   1.5?9.3
 FSH (mIU/mL)   17.15   1.4?18.1

Hi elewated estrogen, extr low testosterone, low prolactin and docs dont hawe a clue how to help this man.

They mentioned this as posible inwoled in pois, i noticet in Muons case hi elevated t1:
 Variable disorders of the innate and adaptive immune systems, including T-helper cell type 1, 2, and 17 immunity, might be involved in the pathogenesis of POIS, and the roles of specific components of the immune system remain to be investigated.


https://www.sciencedirect.com/science/article/pii/S2050116118300199

Whot is intresting low igg3 , i found this woman wich is helped by imunoteraphy.
She also hawe pelvic pain etc...
http://pmj.bmj.com/content/postgradmedj/70/830/924.full.pdf

[Hopeoneday]

Hi Muon, did you tested cd-57? It will be intristing to see is it low!

[Muon]

Hi HOD, elevated numbers of CD57+ NK cells play a role in acute infections (like CMV) but in my case it's low. Persistent low numbers can make you susceptible for infections. I have no idea why they are decreased. My brother did the same test but his result is normal, interferon gamma was also in the normal range for him.   

[Hopeoneday]

I know that some of us dont like lyme and lyme coinfections teory, but it is wery posible to some of us.
See- http://www.tiredoflyme.com/cd57.html

https://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/3481919-cd-57-results-back

I expected low cd57 in you tests!
No person with cronic lyme hawe tha same symptomes, but in general is known that lyme are in brain and could be in all organs in body...

[Muon]

Yes I'm aware of the link with Lyme (I think there was also a link with a particular mycoplasma strain). However I have been tested for Lyme more than once, my brother as well, all negative. Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal. If it is Lyme in my case, which I don't think it is, then it's probably some secondary infection besides the main cause of POIS.

[nanna1]

I also tested negative for Lyme (no detectable Lyme antibodies). Please see the updated Virus and bacteria test abnormal: section of my blood test.

[Hopeoneday]

I think that lyme antibody test is irelevant in cronic late stages.

[Nas]

Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal.

Oh wow you just literally proved that POIS is genetic; which is very important to take into consideration when theorizing about POIS treatment.

[demografx]

Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal.

Oh wow you just literally proved that POIS is genetic; which is very important to take into consideration when theorizing about POIS treatment.

My sons have no POIS.