Author Topic: Gather and Post Here Your Medical Tests Results - Discussion Thread  (Read 257286 times)

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #160 on: November 20, 2018, 02:24:14 PM »
No he can't. I'm glad I even got a response. You will only get medical advice and prescription when you are a patient, it doesn't work like the way you described it. He also did not recommend me any doctors or hospitals because of the bad experiences MCAS patients might have with them. There is a mast cell disease center in The Netherlands. However I have spoken , quite by accident, a student of this center. He told me they don't know anything about MCAS so an appointment there would be useless.

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #161 on: November 20, 2018, 03:18:05 PM »
Hi all, I finally reached to have a short phone conversation with a retired Mast Cell Disorder specialist. He gave me the name of two old work collegues he had. He tells me that they are able to help me in diagnosing MCAS. I have an apointment with one of them (on december 4th). If for any reason I am not able to go on december the 4th, I also have reserved an apointment with her for december the 10th. Just in case. In my country there is a Medical center specialized on Mast Cell Disorders. Hope she will redirect me to It. Will tell you.

I have been using etoricoxib (potent NSAID) until yesterday. Because I have been using it during too much time now. And apart that during time, its effectiveness has been decreasing. Or my body over time, it ends up getting used and my possible MCAS trigger (pressure laying down on bed, or sitting down in any place) was already gaining ground on the etoricoxib. Basically I am not able to sleep the necessary amount of time daily. My GP, told me recently to try Tramadol.

Hopeoneday

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #162 on: November 23, 2018, 05:57:24 PM »
A 32 year old scientists hawe a lot of info and explanations-
https://www.mastattack.org/2014/10/how-to-get-out-of-a-reaction-cycle/

To quest abot tick byte -she answered:

Some people who have Lyme also have MCAS, and some people were misdiagnosed
with Lyme when they really had MCAS. They appear similar in many ways.

Explanes a lot:
https://www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/

As far as i can understand, something can diturb our normall imune proceses in bone marow,
(I suspect some sort of infection) , genetic mutations, adults hawe life long disiese.
Mastocaytosis is "difernet" than mcas ...
« Last Edit: November 23, 2018, 06:09:47 PM by Hopeoneday »
Dr-pois.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #163 on: November 23, 2018, 06:19:24 PM »
A 32 year old scientists hawe a lot of info and explanations-
https://www.mastattack.org/2014/10/how-to-get-out-of-a-reaction-cycle/

To quest abot tick byte -she answered:

Some people who have Lyme also have MCAS, and some people were misdiagnosed
with Lyme when they really had MCAS. They appear similar in many ways.

Explanes a lot:
https://www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/

As far as i can understand, something can diturb our normall imune proceses in bone marow,
(I suspect some sort of infection) , genetic mutations, adults hawe life long disiese.
Mastocaytosis is "difernet" than mcas ...
Lyme can perhaps be a trigger for MCAD.
It is really curious when it comes to POIS. Waldinger thinks what we have is auto-immune. It could be true but it doesn't explain the systematic symptoms that MCAS explains better. But MCAS in turn doesn't explain how it gets triggered by semenal fluid?
POIS could be a case where we have both an auto-immune response to semenal fluid, and this auto-immune response triggers the MCAD.
For your case perhaps you got Lyme once in your life, but this caused your immune system to destablize and treat the Semenal fluid as if it was lyme. This activates Mast Cells but because of MCAD it releases mediators all across the body. Perhaps in my case the MCAD is only located near the brain which would explain how most of my symptoms are cognitive.
Maybe, I don't know I have no proof for auto-immune disease, Nanna mentioned that his auto-immune test was negative, so I don't know.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #164 on: November 23, 2018, 06:25:01 PM »
Yes that's familiar to me HOD all those triggers adding up. I wonder if anyone has been tested for these:
https://www.mastattack.org/2015/11/immunoglobulin-free-light-chains-a-possible-link-between-autoimmune-disease-and-mast-cell-activation/

If antibodies in general play a role in POIS then they would be broken down into heavy and light chains. If POIS is an auto-immune condition and the antibody is too specific for detection wouldn't it break down into light chains as well which is easier to detect?

What if these antibodies break down into light chains and cause secondary MCAS or inflammation? Just some food for thought.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #165 on: November 23, 2018, 06:34:46 PM »
Yes that's familiar to me HOD all those triggers adding up. I wonder if anyone has been tested for these:
https://www.mastattack.org/2015/11/immunoglobulin-free-light-chains-a-possible-link-between-autoimmune-disease-and-mast-cell-activation/

If antibodies in general play a role in POIS then they would be broken down into heavy and light chains. If POIS is an auto-immune condition and the antibody is too specific for detection wouldn't it break down into light chains as well which is easier to detect?

What if these antibodies break down into light chains and cause secondary MCAS or inflammation? Just some food for thought.

Isn't there a kappa to lambda test that would test light chains?

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #166 on: November 23, 2018, 06:48:28 PM »
Isn't there a kappa to lambda test that would test light chains?
Yes in urine or serum and papers stating the half-life should be around 2-6 hours.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #167 on: November 23, 2018, 06:52:29 PM »
Isn't there a kappa to lambda test that would test light chains?
Yes in urine or serum and papers stating the half-life should be around 2-6 hours.
Do it!
No pressure though I know you've been doing alot of tests lately and its probably super expensive.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #168 on: November 23, 2018, 07:09:35 PM »
Btw ECP testing will not happen, there was miscommunication and there is actually no place in the Netherlands that has this test.
I don't know whether I should do more testing perhaps other people could test for light chains, we have >700 members.

Vandemolen

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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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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #170 on: November 23, 2018, 08:21:33 PM »
Btw ECP testing will not happen, there was miscommunication and there is actually no place in the Netherlands that has this test.
I don't know whether I should do more testing perhaps other people could test for light chains, we have >700 members.
Maybe you should start aiming for treatment. I personally ordered Quercitin and Luteolin I read some where that these two are actually stronger mast cell stablizers than Ketotifen and sodium chromoglycate. If what I suffer from is truely MCAS then these have to work.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #171 on: November 23, 2018, 08:39:11 PM »
Neuroprotek:  https://www.ebay.nl/itm/222802626661

2 capsules min per 20 Kg = 6 capsules per day. 1 bottle = 60 capsules. 1 month of usage = 3 *58 > 150 euro per month.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #172 on: November 24, 2018, 09:47:11 AM »
Neuroprotek:  https://www.ebay.nl/itm/222802626661

2 capsules min per 20 Kg = 6 capsules per day. 1 bottle = 60 capsules. 1 month of usage = 3 *58 > 150 euro per month.
I'm going for these ( https://www.amazon.com/gp/aw/d/B00S59NYT2/ref=mp_s_a_1_2_a_it?ie=UTF8&qid=1542826151&sr=8-2-spons&keywords=quercetin&psc=1&smid=A310IKNCY4UOM7 )
And ( https://www.amazon.com/Swanson-Luteolin-Cognitive-Longevity-Supplement/dp/B00ELM5EFE )
Probably will cost me 30$ a month but we'll see.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #173 on: November 24, 2018, 11:39:29 AM »
Ordering from the company itself is much cheaper and you will get a discount when ordering more of them: https://algonot.com/products/
Your selection contains far more quercetin and more rutin per capsule but it got 50% less luteolin per capsule compared to neuroprotek. Luteolin is a more potent stabilizer than the other two. Methoxy-luteolin is even better but I don't know where to find that one. Theoharides recommend a minimal daily dose for patients, spread throughout the day, of 200 mg Luteolin per 20 kg.

So if you are weighing at least 60 kg then in that case you will need at least 600 mg/day, this means 12 of your Swanson luteolin complex capsules or 6 of the neuroprotek capsules. But the 500 mg quercetin is relatively high dosed so I don't know if that can out balance the issue if you decide to take less luteolin capsules. These brands however do not state the purity of the ingredients though, that's another issue.

Discussion about Neuroprotek: https://youtu.be/6gfTFwJgIVQ?t=6001
The reason why Quercetin and Rutin being added: https://youtu.be/6gfTFwJgIVQ?t=6194
Dosage adults and children plus phenolic intolerance discussion: https://youtu.be/6gfTFwJgIVQ?t=6534
Discussion about Brain Gain and people with methylation related mutations: https://youtu.be/6gfTFwJgIVQ?t=6678
MCAD patients with fatigue and muscle pain; FibroProtek: https://youtu.be/6gfTFwJgIVQ?t=6758

« Last Edit: November 24, 2018, 01:17:53 PM by Muon »

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #174 on: November 24, 2018, 12:21:15 PM »
Ordering from the company itself is much cheaper and you will get a discount when ordering more of them: https://algonot.com/products/
Your selection contains far more quercetin and more rutin per capsule but it got 50% less luteolin per capsule compared to neuroprotek. Luteolin is a more potent stabilizer than the other two. Methoxy-luteolin is even better but I don't know where to find that one. Theoharides recommend a minimal daily dose for patients, spread throughout the day, of 200 mg Luteolin per 20 kg.

So if you are weighing at least 60 kg then in that case you will need at least 600 mg/day, this means 12 of your Swanson luteolin complex capsules and only 6 of the neuroprotek capsules. But the 500 mg quercetin is relatively high dosed so I don't know if that can out balance the issue if you decide to take less luteolin capsules. These brands however do not state the purity of the ingredients though, that's another issue.
Idk, I'm just gonna chuck the pills in to my mouth and see where that'll get me. I've already ordered them anyways.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #175 on: November 24, 2018, 01:06:05 PM »
BrainGain and FibroProtek contain even more luteolin.

About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.

It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
« Last Edit: November 24, 2018, 01:52:48 PM by Muon »

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #176 on: November 24, 2018, 09:07:37 PM »
BrainGain and FibroProtek contain even more luteolin.

About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.

It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
I mean, yeah cold showers for me do wonders. It helps relieve inflammation quicker.
I'm kinda curious though why doesn't NSAID work for our case of inflammation. For example why can't celebrex fix your muscle inflammation ?

Vandemolen

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #177 on: November 24, 2018, 09:36:52 PM »
BrainGain and FibroProtek contain even more luteolin.

About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.

It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
For me it’s the opposite. My POIS is 75% worse during winter than during summer. For me it would be better to abstain the whole winter. For my POIS. But also for prostate infections. They are worse during winter. Hot showers help me. Cold showers kill me. During summer I can be sexual active once every week. During winter when I am sexual active once a month POIS and UTI kill me.
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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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #178 on: November 25, 2018, 11:29:54 AM »
I had some kind of flare up yesterday outside of POIS. It happened after a big meal. It felt like I was getting wrecked over the majority of my body but without pain. It starts smoldering on the background but slowly builds up to higher intensity. My brain also felt busy. When I get these things I always get the impression my own body is attacking itself. This process went on for a couple of hours. It did leave the organs alone except for the end where I felt a short stabby pain in my spleen before it all ended.
« Last Edit: November 25, 2018, 11:45:14 AM by Muon »

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #179 on: December 04, 2018, 02:53:04 PM »
I was thinking of taking small dosages of epinephrine for POIS but apparently it is not allowed to be sold in pharmacies, and EpiPens are not available in Iraq.
God demn it all!!!!
I've literally tried everything and nothing works for me. My last hope are flavanoids. If not, I don't know.
I think I'm screwed.