Post Orgasmic Illness Syndrome (P.O.I.S.)
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: Gather and Post Here Your Medical Tests Results - Discussion Thread  ( 18267 )
Nas
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« #225 : December 26, 2018, 03:49:04 PM »

Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. Apparently, all these years of histamine release in my brain gave me a form of histamine tolerance. After I take the pack I start feeling sleepy. Like today I only took Quercetine and Luteoline without the anti-histamines and that made me sleepy as fuck. I've also noticed that with Ketotifen. Now I know that Ketotifen is known for inducing sleepiness, but in my case it cripples me. I've known people from MCAS FB group who say that Ketotifen barely does anything to them. So perhaps this is a good thing? I'm reducing all that histamine that is stuck in my brain? IDK.   
Hopeoneday
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« #226 : December 26, 2018, 06:01:13 PM »

Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. Apparently, all these years of histamine release in my brain gave me a form of histamine tolerance. After I take the pack I start feeling sleepy. Like today I only took Quercetine and Luteoline without the anti-histamines and that made me sleepy as fuck. I've also noticed that with Ketotifen. Now I know that Ketotifen is known for inducing sleepiness, but in my case it cripples me. I've known people from MCAS FB group who say that Ketotifen barely does anything to them. So perhaps this is a good thing?
I'm reducing all that histamine that is stuck in my brain? IDK.

If ours teories is wright, that should be happennig,
try adyusting dosage an then incriese,
an test how you feeling , take your time to test.


Dr-pois.
fernab
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: 117


« #227 : December 26, 2018, 06:29:05 PM »

Hi Vandemolen,

I continue taking Disodium cromoglycate. Today or tomorrow will be for two weeks.
for now I'm not noticing a big difference. but mast cell disorders, as with POIS, are not treated equally for all patients. I will continue taking it in spite of it. I will see an Mast Cells disorder specialist on january 8th. I will decide then if it's worth continuing to take it or not and wait for another indication from the specialist.

It is true that a diet low un histamine it's also a type of treatment for some MCAS patients. Un some cases it works. I also have difficulties to sleep correctly. I suppose It would take some time until you notice any progress/good result. Let us know if you get any good result if you do a low histamine diet. Good luck with it!

Will keep you upated.
fernab
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: 117


« #228 : December 26, 2018, 06:45:04 PM »

Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. After I take the pack I start feeling sleepy.

Hi Nas, good to know you found something that makes you feel better. I know ketotifen as a drug for allergy in eyes (itchy eyes, when pollen allergy, for instance).

If you are taking it on your own, please, take care also of side effects. Just in case.

But It is good to know...
Vandemolen
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« #229 : December 26, 2018, 06:49:24 PM »

Hi Vandemolen,

I continue taking Disodium cromoglycate. Today or tomorrow will be for two weeks.
for now I'm not noticing a big difference. but mast cell disorders, as with POIS, are not treated equally for all patients. I will continue taking it in spite of it. I will see an Mast Cells disorder specialist on january 8th. I will decide then if it's worth continuing to take it or not and wait for another indication from the specialist.

It is true that a diet low un histamine it's also a type of treatment for some MCAS patients. Un some cases it works. I also have difficulties to sleep correctly. I suppose It would take some time until you notice any progress/good result. Let us know if you get any good result if you do a low histamine diet. Good luck with it!

Will keep you upated.
I read that it takes time before disodium cromoglycate works. But it should work after 3 weeks. I mean work as in coping with the histamine problem. I do not know it helps with POIS. Good luck.

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.
Nas
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« #230 : January 04, 2019, 10:28:25 AM »

So apparently doctors perscribe 500mg Quercetin 3 times a day after food, Because of how Querecitin is very badly absorved in the body, nevertheless trying to bypass the BBB. So definitely will need to increase Quercetin intake.
fernab
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« #231 : January 04, 2019, 10:35:38 AM »

Hi Nas,

If you are right, maybe the reason why I did not felt any relief when I took quercitine, is because I took a very low dose.... I don't have any idea about which are the good dosage. Or if maybe it depends a bit on each person..... No idea.... Maybe you are right, I don't know. Next 8th (very soon) will see a specialist... Will let you know....

Good luck!!!...
Nas
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« #232 : January 04, 2019, 10:48:15 AM »

Good luck!!!...

You too!!
Hopeoneday
Sr. Member
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: 383



« #233 : January 04, 2019, 05:11:12 PM »

Dose enybody of you who hawe MG symptomes tested acetylcholine receptor antibodies,
MuSK antibodies?

Dr-pois.
Hopeoneday
Sr. Member
****
: 383



« #234 : January 06, 2019, 06:54:55 PM »

Intresting thing related to MCAS conection is that i hawe non alergic cronic sinusuitis (all my life , since childhood).
Recently i dicover that some food and beavarages open my stifed nouse for several hours, no medicine cold do
that, only nasal sprays with nasty side effects.
I didnt know for years what is that in cofee that help me to feel beter and open my nouse,
because i been cofeine intolerant because of pois(in times when i didnt know whot was wrong with me,
when sewere pois atacand  nerwe on the edge, put cofein in that you hawe panic atacs party).

Now i discovered that is cafeic acid tipe of polyphenol!!!
So meny benefits.

http://www.enzolifesciences.com/ALX-270-231/caffeic-acid/

https://pubchem.ncbi.nlm.nih.gov/compound/caffeic_acid

Dr-pois.
Vandemolen
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« #235 : January 09, 2019, 05:02:10 PM »

I updated my blood test results. I added a few. My IgM is too low. But my IgA, IgE and IgG are ok. My POIS doctor told me that if IgM is too low than IgG will not function well, even that the blood result is good. A low IgM means that I am sensitive for infections. My POIS doctor thinks that the low IgM is the reason why I have a lot of UTI’s and prostate infection. There is no cure for low IgM. There are 4 options: infusion, injections, prophylactic antibiotics and Immunoglobulin Replacement Therapy. I am not a fan of antibiotics. My doctor sended me to a big hospital where there is a specialisation of immulogy. My POIS doctor does not think that when my IgM problem is under control that that will help my POIS.

Is there someone elsed who tested IgM? Would be interesting to test in and out POIS. Will IgM go up while in POIS?

More information about SIGMD:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591887/

Bloodtest Vandemolen (I combined a few bloodtest in the last years because not all things were tested in 1 blood test)

Hemotology
ESR: 3. Reference range (RR)0-15
Hemaglobin: 9.8. RR: 8.5-11
Hematocrit: 0.40. RR: 0.40-0.50
Mean Corpuscular Volume: 84. RR: 80-100
Erythocytes: 4.89. RR: 4.50-5.50
Trombocytes: 6.0. RR: 6.0
Leucocytes: 5.6. RR: 4.0-10.0
Neutrophils: 2.95. RR: 2.0-7.0
Basophilic granulocytes: 0.05. RR: 0-0.20
Eosinophilic granuloctyes: 0.15. RR: 0.00-0.45
Lymphocytes: 2.01. RR: 0.50-4.50
Moncytes: 0.41. RR: 0-0.80.
Ferritin: 54. RR: 25-250
Amalyse 92. RR: 0-99

Clininal Chemie
Urea: 3.5 (in 2016). RR: 2.5-6.5
Creatinine: 85. RR: 64-104
eGFR (MDRD): higher than 60. RR: higher than 60
eGFR (CKD-EPI): higher than 90. RR: higher than 90
Natrium: 141. RR: 135-145
Calcium: 2.59. RR: 2.15-2.65
Magnesium: 0.95 (in 2016). RR: 0.70-1.00
Uric acid: 0.37. RR: 0.20-0.38
ASAT: 29. RR: 0-34
ALAT: 26. RR: 0-44
Alkaline Phosphoatase: 56. RR: 40-120
gammaGT: 35. RR: 0-54
Tryptase: 4.6. RR: 0-11.4
Triglycerides: 2.4 (in 2016). RR: 0-2.0
Glucose: 5 (in 2016). RR: 4-6
Vitamin B12: 382. RR: 130-700
Methylmalonic serum: 221. RR: less than 350
Vitamin D (25-OH): 173. RR: higher than 50
Iron: 13. RR: 14-30
Transferrin: 2.3. RR: 2-4
Cholesterol: 7.21. RR: 2.50-6.50
LDL cholesterol: 3.6. RR: less than 2.5
HDL cholesterol: 1.0. RR: less than 1.0

Endocrinology
TSH: 8.1 RR: 0.55-4.8
Free T4: 17.5. RR: 10-26
Thyriod Peroxidase antibodies: 25. RR: less than 50
Cortisol: 0.19. RR: 0.03
Testosterone: 9.6 (in 2016). RR: 10-30
Free testosterone: 378 (in 2011). RR: 174-729
SHBG: 12 (in 2011). RR: 13-71
DHEA-S: 7.0. RR: 2.6-14
PTH: 1.6. RR: 1.6-6.8
PSA: 2.3 (in 2016). RR: 0-2.0

Immonology
C-reactive protein: 1. RR: 0-10
IgA: 1.22. RR: 0.70-4.00
iGe: 64 (in 2015). RR: 1-90
IgM: 0.26. RR: 0.40-2.30
IgG: 10.0. RR: 7.0-16.0
t-TransGlut IgA: less than 1 (in 2011). RR: 0-5
Prolactin: 0.29 (in 2011). RR: 0-0.32
Progestrone: 1.8 (in 2010). RR: 0.7-4.3
HCG + beta: less than 1 (in 2011). RR: 0-1
« : January 10, 2019, 11:42:04 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.
Vandemolen
Hero Member
*****
: 737



« #236 : January 10, 2019, 11:19:08 AM »

I updated my blood test results. I added a few. My IgM is too low. But my IgA, IgE and IgG are ok. My POIS doctor told me that if IgM is too low than IgG will not function well, even that the blood result is good. A low IgM means that I am sensitive for infections. My POIS doctor thinks that the low IgM is the reason why I have a lot of UTI’s and prostate infection. There is no cure for low IgM. There are 4 options: infusion, injections, prophylactic antibiotics and Immunoglobulin Replacement Therapy. I am not a fan of antibiotics. My doctor sended me to a big hospital where there is a specialisation of immulogy. My POIS doctor does not think that when my IgM problem is under control that that will help my POIS.

Is there someone elsed who tested IgM? Would be interesting to test in and out POIS. Will IgM go up while in POIS?

More information about SIGMD:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591887/

Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
« : January 10, 2019, 11:41:40 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.
Muon
Sr. Member
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: 457



« #237 : January 10, 2019, 11:51:00 AM »

Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
It's unlikely it plays a role in POIS, results are all normal:

My IgM
IgM in POIS paper
Ashwin's IgM


Vandemolen
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« #238 : January 10, 2019, 12:10:20 PM »

Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
It's unlikely it plays a role in POIS, results are all normal:

My IgM
IgM in POIS paper
Ashwin's IgM
Ok thanks. If 3 other POIS-patients have normal IgM than I think it is not related to POIS. I thought maybe it was caused by desens, but if your IgM is ok then not. People with a shortage of IgM do get often more auto immune diseases. So maybe in my personal case it could play a role why I have POIS. Or it is a secundairy problem beside POIS. Not all POIS-patients have a lot of bladder/prostate infections and UTI like me.
« : January 10, 2019, 04:12:47 PM 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.
Vandemolen
Hero Member
*****
: 737



« #239 : January 11, 2019, 10:51:06 PM »

https://www.mastattack.org/associated-conditions/

Asociated condition, almost all we mention on forum.

What abou anti ige treatmant, she sed that some peoples helped medicine like
xolair https://en.wikipedia.org/wiki/Omalizumab

Yeah Fernab, in mcas it is all about histamine.
I think that reaction on arosaul is exses in us, because of hudge
rection of histamine in brain, then body.

It is exces, or lack histamine in brain, then on arosaul or O, hited hardly
cascade of symptomes, i dotnt know is it posible to mesure histamine lewels
in brain.
I asked my doctor if he can give me Xolair. Not for POIS, but for urticaria. But you never know, maybe it helps against POIS too. Xolair is by injections. So maybe he will try other medicines first.

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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