Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => POIS Research => Topic started by: Muon on February 01, 2020, 01:58:17 PM

Title: Laboratories, online pharmacies & parameter discussion
Post by: Muon on February 01, 2020, 01:58:17 PM
Please share labs & online pharmacies with the poiscenter community                     

Important update 4-2-2021: Huge list of testing labs can be found here (https://mecfsroadmap.altervista.org/#testing-laboratories)

This thread is meant to give you a summary of laboratories where you can do testing yourself and to discuss parameters prior to the actual testing. Feel free to post your experience with laboratories in the comments below. Be aware of the fact that these are labs and thus won't offer consultations with doctors. You may also share a lab location anonymously by sending me or an admin a private message. People can ask for advice, give their recommendation/thoughts, or simply brainstorm regarding parameters.

At least the following two conditions must be met:

1) A referral from a doctor is not necessary
2) Not obligated to make use of insurance companies

You may post your results here:

Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.0) (Which can serve as an inspiration for testing)

And discuss about these to keep things clean over here:

Gather and Post Here Your Medical Tests Results - Discussion Thread (https://poiscenter.com/forums/index.php?topic=2695.0)

The following sites can be used to find interesting papers/info about the parameter in question:
(Type in the parameter and/or a symptom/condition/disorder for example. How to unlock papers (https://poiscenter.com/forums/index.php?topic=3127.0))

https://scholar.google.com

https://www.ncbi.nlm.nih.gov/pubmed/

https://en.wikipedia.org/wiki/Main_Page

Note: Some labs do offer the option to send test kits to international patients.

Belgium

City: Brussels
Lab name: R.E.D Laboratories
Website: https://redlabs.be/
Acceptance of international patients: Yes
Specialization: Immunology, Intestinal dysfunction/microbiome
Appointment required?: Yes (see specifics below)
Members who went there: None, Muon had contact
Request forms/catalog: https://redlabs.be/ordering-tests/request-forms/
Info:

Muon: They don't draw blood at their own lab. There is a facility nearby that makes use of their service. That facility can draw your blood and ship samples to redlabs. The facility makes use of consultancies, you will have to point out that you don't need a consultancy, just draw blood and ship it. Contact Redlabs via mail and ask them where to draw blood or how to ship stuff from your home town.

Germany

City: Berlin
Lab name: IMD Labor Berlin
Website: https://www.imd-berlin.de/labor.html
Acceptance of international patients: Yes
Specialization: Immunology, Type IV Hypersensitivities
Appointment required?: No
Members who went there: Muon & his brother
Info:

Request forms main portal (https://www.imd-berlin.de/imd-labor/service/anforderungsscheine.html)

Standard form self-payer (https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_Anforderung_IGEL.pdf), Standard form expanded (https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_6_seiter_Immunologie_Selbstzahler.pdf): These are parameters that are always available to self-payers, you can print and fill out the form, just walk into their lab without an appointment and hand it over at the service desk. Multiple forms could be used for different points in time.

Entire catalog (https://www.imd-berlin.de/nc/leistungsverzeichnis.html?tx_ajdiagnostics_analyse%5Baction%5D=list&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=d2c20227b9b062a5adad857f44f572a5): Besides the regular tests from the standard form you can ask for a pricing list (cost per test) for alternative parameters. You need to send an email for specific costs per test ... they have it from A to Z. Parameters with the description ''Analytik nur im Rahmen von Studien-/Forschungsprojekten, zum Studienservice'' are not available to the public, it's restricted to official research.

Many samples must be received within 24h which is impossible for international patients. It's better to go there and draw blood at lab location.

Customized tests are possible like using LTT combined with semen/allergen/antigen plus additional Effector cell typing (https://www.imd-berlin.de/en/special-areas-of-competence/dentistry/allergies-and-intolerances/effector-cell-typing.html). The lab director Dr. von Baehr is already aware of POIS and is open-minded about it.

They will send lab results and invoice to your home address.

======================================================

City: Berlin
Lab name: Celltrend
Website: https://www.celltrend.de/en/
Acceptance of international patients: ?
Specialization: Autoimmunity (POTS, CFS/ME, CRPS, adrenergic/muscarinic auto-antibodies, small fiber neuropathy)
Appointment required?: ?
Members who went there: Nobody
Request forms/catalog: Main (https://www.celltrend.de/en/pots-cfs-me-crps.html), POTS (https://www.celltrend.de/wp-content/uploads/2018/09/18-05-25-POTS-Anforderungsschein-eng.pdf), CFS (https://www.celltrend.de/wp-content/uploads/2018/09/18-05-25-CFS-Anforderungsschein-eng.pdf), CRPS (https://www.celltrend.de/wp-content/uploads/2018/09/18-08-31-CRPS-Anforderungsschein-eng-1.pdf)
Info:

"It is also possible to send samples (IMPORTANT: Only send the seperated sera after centrifugation, not the entire unprocessed blood or plasma sample) for auto-antibody diagnostics to the CellTrend lab."

Notes for specimen collection and transport:
Collect serum with conventional serum tubes. Centrifuge after clotting and transfer about 1 ml of serum into a new tube (do not send whole blood or plasma tubes). Ship at room temperature to our laboratory address (see above). Duration should not exceed more than 48h, therefore use a courier service like FedEx or similar. Please inform us about shipping by email with carrier/tracking number.

The Netherlands

City: Bunnik
Lab name: World Health Laboratories (former name: European Laboratory of Nutrients (ELN))
Website: https://www.worldhealthlaboratories.com/nl/home
Acceptance of international patients: Unknown
Specialization: Nutrients, intestinal permeability
Appointment required?: Unknown
Members who went there: Muon (shipping only)
Request forms/catalog: Request form (https://irp-cdn.multiscreensite.com/f8e1cb40/files/uploaded/Aanvraagformulier%20WHL%2002-2019.pdf)
Info:

Muon: They have sent me an intestinal permeability testkit which I shipped back once completed. Results and invoice received at home address.

==========================================================

City: Nederweert
Lab name: Pro Health Medical
Website: https://www.prohealth.nl/
Acceptance of international patients: Yes
Specialization: Borrelia/Lyme, Food intolerance, breath tests.
Appointment required?: Yes
Members who went there: Nobody
Request forms/catalog: Main portal (https://www.prohealth.nl/testmogelijkheden/)
Info:

1) They have locations (https://www.prohealth.nl/priklocaties-pro-health-medical/) througout the country where you can draw blood. You don't need a referal from your doctor for this.

2) Another option is to draw blood at your local hospital/clinic. They will send material to this clinic, however you will need a signature from you doctor when using this method.

====================================================================

City: Locations (https://www.yourlabs.nl/prikposten/regulier)
Lab name: Yourlabs
Website: https://www.yourlabs.nl/
Acceptance of international patients: Yes
Specialization: Just basic stuff.
Appointment required?: No
Members who went there: Nobody
Request forms/catalog: https://www.yourlabs.nl/bloedonderzoek
Info: Result within 24h

====================================================================

https://www.prescan.nl/

====================================================================

https://meddialab.nl/

==================================
==================================

Spain

City: Castellon, Golf, Alcora, Vinaroz, Vall d'uixó, Benicarlo
Lab name: Calderon
Website: https://www.laboratoriocalderon.com/
Acceptance of international patients: Unknown
Specialization: Gut health, IBS:Anti-CdtB, Anti-vinculin, D-lactate, Breath tests/SIBO
Appointment required?: Unknown
Members who went there:
Request forms/catalog: https://www.laboratoriocalderon.com/categoria-producto/tienda-online/
Info:

====================================================================

UK (England)

City: Sheffield
Lab name: Protein Reference Unit (PRU, part of Sheffield Teaching Hospitals NHS)
Website: https://www.immqas.org.uk/pru.asp?CID=1
Acceptance of international patients: Yes
Specialization: Immunology, Mast Cell activation markers (https://www.mastcellaction.org/assets/file?filePath=__/mast-cell-activation-markers-final-flyer.pdf)
Appointment required?: Unknown
Members: Muon

Muon: After communication via email I was being told I could send a package with 24h urine (got the urine collection equiment from my local hospital and hired a third party courier which provided dry ice and package material) anytime of the day from the Netherlands to their facility. I did include a piece of paper with my patient information and my GP's office address printed on it. They will only send the results and invoice to your GP's office. However you don't need a referal, at least for international patients like me.

The good thing about this lab is that they offer mast cell activation markers which is rare for European labs.

Update march 9th 2021: Connorg__ told me that he needed a referal from his GP.

USA

Find medical test: https://www.findlabtest.com/

https://www.healthtestingcenters.com/

===================================================================

City: Reno, NV
Lab name: R.E.D Laboratories
Website: https://redlabs.be/
Acceptance of international patients: ?
Specialization: Immunology, Intestinal dysfunction/microbiome, pathogens, pro-inflammatory cytokines
Appointment required?: ?
Members who went there: None
Request forms/catalog: https://redlabs.be/ordering-tests/request-forms/
Info:
They seem to have a lab in the USA. Not sure if one needs a referal from a care provider.

====================================================================

City: Beaverton, OR
Lab name: ZRT laboratory
Website: https://www.zrtlab.com/
Acceptance of international patients: Yes
Specialization: Hormones, neurotransmitters
Appointment required?: ?
Members who made use of it: BoneBroth (https://poiscenter.com/forums/index.php?topic=2684.msg26176#msg26176), EDS (https://www.thenakedscientists.com/forum/index.php?topic=6576.msg264567#msg264567)
Request forms/catalog: Full Catalog (https://www.zrtlab.com/media/2036/directory-of-tests.pdf), General info (https://www.zrtlab.com/media/1669/testing-with-zrt.pdf), Overview of testkits (https://www.zrtlab.com/media/2098/overview-of-kits.pdf)
Info:
They can send testkits.

==================================================================

City: South Amboy, New Jersey
Lab name: Health Diagnostics and Research Institute/World Health Laboratories
Website: https://www.worldhealthlaboratories.com,  USA branch probably outdated: http://www.hdri-usa.com/
Acceptance of international patients: Unknown
Specialization: Nutrients, intestinal permeability
Appointment required?: Unknown
Members who went there: Nobody
Request forms/catalog: Request form (https://irp-cdn.multiscreensite.com/f8e1cb40/files/uploaded/Requestform%20WHL%2001-2019.pdf)
Info: Not sure if one needs a referal from a care provider. Also not sure if the above request form is the one from the USA or just the EU one translated for international patients.

==================================================================

City: See Lab Locator (https://www.directlabs.com/LabLocator/tabid/67/language/en-US/Default.aspx), it makes use of Quest Diagnostics.
Lab name: DirectLabs
Website: https://www.directlabs.com/Default.aspx
Acceptance of international patients: Yes
Specialization: Tons of stuff including cytokine profiles
Appointment required?: ?
Members who went there: None, CFS/ME forum: Sometexan84 (https://forums.phoenixrising.me/threads/discriminatory-cytokine-profiles-predict-muscle-function-fatigue-and-cognitive-function-in-patients-with-myalgic-encephalomyelitis-cfs.81197/#post-2320743) (did the CytoDx test (https://www.directlabs.com/TestDetail.aspx?testid=3742) ($379.00))
Request forms/catalog: https://www.directlabs.com/OrderTests/tabid/55/language/en-US/Default.aspx
Info: No referal needed from health care provider and no involvement of insurance. They can send test kits to international patients outside the USA.

Learner1 (https://forums.phoenixrising.me/threads/discriminatory-cytokine-profiles-predict-muscle-function-fatigue-and-cognitive-function-in-patients-with-myalgic-encephalomyelitis-cfs.81197/#post-2294547) did the CytoDx at https://www.diagnosticsolutionslab.com/

=================================================================

City: Plymouth
Lab name: Iliad Neurosciences
Website: http://iliadneuro.com/index.html
Acceptance of international patients: ?
Specialization: Folate receptor antibody test (FRAT)
Appointment required?: ?
Members who went there: None
Request forms/catalog: http://iliadneuro.com/pdf/FRAT%20Lab%20Requsition%20Form.pdf
Info: FRAT cost: $ 295

================================================================

City: Fort Myers, Florida
Lab name: Caring medical
Website: https://www.caringmedical.com/
Acceptance of international patients: Yes
Specialization: Vagus nerve function, Cervical spine instability, Digital motion X-Ray (https://youtu.be/sIUBBCtl6aU?t=123), HRV
Appointment required?: ?
Members who went there: None
Request forms/catalog: https://www.caringmedical.com/conditions/
Info:

================================================================

Various tests

IBS testing
Anti-CdtB
Anti-vinculin
https://www.ibssmart.com/ (Countries (https://www.ibssmart.com/ibs-test-available-internationally)
https://chriskresser.com/is-ibs-an-autoimmune-disease/

GI map
https://www.diagnosticsolutionslab.com/tests/gi-map
USA

SIBO and IMO
https://www.triosmartbreath.com/

=================================================================

Online pharmacies

Please share online pharmacies in the comments so I can put them here, thanks.

List of Reliable Prescription-free Pharmacies (https://forums.phoenixrising.me/threads/tips-for-finding-reliable-and-trustworthy-prescription-free-online-pharmacies.8113/)

Here's where I was planning to buy the Rifaximin from, they're Indian pharmacies but they're legit, I ordered the milnacipran from them a while ago. Probably the quality standards aren't the same as Eu but they're still the same drugs.

https://aipctshop.com/product/rifagut-xifaxan400-mg-100-tablet/

http://www.unitedpharmacies-uk.md/
Title: Re: Laboratories for self testing
Post by: Muon on February 01, 2020, 01:59:57 PM
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Title: Re: Laboratories for self testing
Post by: Muon on July 08, 2020, 09:11:35 AM
Tregs (https://en.wikipedia.org/wiki/Regulatory_T_cell) could be measured in Berlin: #9 List (https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_Anforderung_IGEL.pdf)

"We demonstrated previously that testosterone treatment induces a strong increase in the Treg cell population both in vivo and in vitro."
Androgen receptor modulates Foxp3 expression in CD4+CD25+Foxp3+ regulatory T-cells (https://www.molbiolcell.org/doi/full/10.1091/mbc.E14-08-1323)

If it's low one could increase the population by androgens or IL-2 therapy. Not sure if they measure total pool and/or subsets.
Title: Re: Laboratories for self testing
Post by: Mushnikk on July 08, 2020, 12:41:46 PM
Tregs could be measured in Berlin: #9 List (https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_Anforderung_IGEL.pdf)

"We demonstrated previously that testosterone treatment induces a strong increase in the Treg cell population both in vivo and in vitro."
Androgen receptor modulates Foxp3 expression in CD4+CD25+Foxp3+ regulatory T-cells (https://www.molbiolcell.org/doi/full/10.1091/mbc.E14-08-1323)

If it's low one could increase the population by androgens or IL-2 therapy. Not sure if they measure total pool and/or subsets.

Is there already a thread on this site that lists recommended test parameters? I will probably get tests done at the IMD lab in Berlin in August. Will keep you posted in the "gather your results"-thread
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 08, 2020, 01:05:32 PM
Is there already a thread on this site that lists recommended test parameters? I will probably get tests done at the IMD lab in Berlin in August. Will keep you posted in the "gather your results"-thread

No there isn't. I would like people to use this thread for lab and parameter discussion in the pre-testing phase. Also people could report laboratories even if they are not making use of it, others may go there instead. There are different theories floating around coupled to their own set of parameters but they are scattered all over the forum. We don't have a central point to discuss testing other than the result thread which addresses results post testing. People should not hesitate to ask for advice, to give their recommendation/thoughts regarding parameters, or simply brainstorm about it. What parameters do you have in mind Mushnikk? 
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 09, 2020, 12:30:46 PM
Throwing some parameters around which are not present on the standard form of IMD in case people are interested.

Chromogranin A (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=150276&tx_ajdiagnostics_analyse%5Btitle%5D=Chromogranin%20A&tx_ajdiagnostics_analyse%5Bsynonym%5D=&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=dc7b34d9b2f80810e19e5358a375c9bb) (Ref (https://poiscenter.com/forums/index.php?topic=3236.0))
Somatomedin C (Insulin-like growth faktor, IGF-1) (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=130481&tx_ajdiagnostics_analyse%5Btitle%5D=Insulin-like%20growth%20factor%2C%20IGF-1%20%28siehe%20Somatomedin%20C%29&tx_ajdiagnostics_analyse%5Bsynonym%5D=&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=ff419dbdac842ab77c73e312814b7e51) (Ref (https://poiscenter.com/forums/index.php?topic=2695.msg35257#msg35257))
Circulating Immune complexes (CIC) (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=150958&tx_ajdiagnostics_analyse%5Btitle%5D=Zirkulierende%20Immunkomplexe&tx_ajdiagnostics_analyse%5Bsynonym%5D=Autoimmun%20Basis-Rheuma%20Rheumatoide%20Arthritis%20Kollagenosen%20C1q-ZIK%20C3d-ZIK%20Autoimmun%20Rheuma%20Vaskulitis%20%20C1q-ZIK%20C3d-ZIK&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=662053d9d65a37f815c87387ede75c43) (Ref (https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172)) (Type III hypersensitivity)
Cryoglobulin (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=150840&tx_ajdiagnostics_analyse%5Btitle%5D=Kryoglobulin&tx_ajdiagnostics_analyse%5Bsynonym%5D=&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=9e446e7544b0a5b418eaf3f3173b29d6) (vascular inflammation, increased blood viscosity, Infection, auto-immunity, found in POIS study, can be asymptomatic (https://en.wikipedia.org/wiki/Cryoglobulinemia#Asymptomatic_cryoglobulinemia))
Lp-PLA2 (Specific marker for vascular inflammation)
ECP (https://en.wikipedia.org/wiki/Eosinophil_cationic_protein) could be explored before and after O ((pseudo)allergic disease activity).
You could ask them if they can provide for a seminal-fluid specific IgE test. This can be elevated despite normal total IgE levels.
Interferon gamma or Th1/Th2 ratio (type IV hypersensitivity, could be measured ~days after O due to delayed reaction)

Parameters which piques my interest on the redlabs immune request form:

Pro inflammatory cytokines especially MCP1 (CCL2, brain inflammation) and MIP-1b (CCL4, could be elevated in case of low androgen levels).
Th1/Th2 cytokines (Allergy, hypersensitivity, infection, autoimmunity)
VEGF serum level (vascular and blood brain barrier permeability(brain fog), increased after stress or release of PGE2)
MMP-9 serum level (Joint/connective tissue inflammation, Arthritis, dry eyes, aortic aneurysms)
Prostaglandin E2 (short half-life, not sure how they will handle the sample, pain and inflammation in general)
Vasointestinal peptide serum level (again short half life, kinda risky)
Kynurenic acid serum level (tryptophan downstream product)
Quinolinic acid serum level (tryptophan downstream product)

PRU lab England:

Mast Cell activation markers (https://www.mastcellaction.org/assets/file?filePath=__/mast-cell-activation-markers-final-flyer.pdf)
If you pick one make sure it's the F2 alpha metabolite 24h urine (https://www.immqas.org.uk/TestItem.asp?id=184). I wouldn't bother with tryptase. All urine samples should be collected for 24h or collected overnight. Use two containers, one to catch fresh urine then cool it down and throw it in the large collection container which is already cold. Must be symptomatic during collection.
Title: Re: Laboratories for self testing & parameter discussion
Post by: berlin1984 on July 10, 2020, 03:04:51 PM
I'd be curious if someone tests:
* CD57 count / CD-57 count (use forum search function. basically test for some lyme & related stuff?)
* Neutropenia (as per this post (https://poiscenter.com/forums/index.php?topic=2695.msg24966#msg24966))
* If you have unlimited money, it would be cool to test for igM (recent activation/ourbreak) for all the virusses :-)
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 10, 2020, 03:37:33 PM
My CD57+ count was low. Did multiple tests for Lyme but all negative. 4 or 5 people did a test for IgM and only VandeMolen had low IgM. CD57+ NK cells are basically a subset of mature CD56 NK cells. CD56 NK cells express CD57 with age (CD57 = old CD56 NK cells).
https://ashpublications.org/blood/article/116/19/3865/28027/CD57-defines-a-functionally-distinct-population-of
https://link.springer.com/article/10.1007%2Fs00262-016-1803-z
Title: Re: Laboratories for self testing & parameter discussion
Post by: berlin1984 on July 10, 2020, 04:09:40 PM
My CD57+ count was low. Did multiple tests for Lyme but all negative.

I stumbled over this, sounded interesting:

"Most commercial tests designed to detect chronic infections are based on measuring your immune reaction?the presence of antibodies?to the invading microbe. However, one of the primary cells that get infected with Lyme spirochetes are the white blood cells themselves, which is a bit of a game-changer? because if your white blood cells are infected, they lose the ability to produce antibodies.
Hence, it is relatively common to get a negative test result.  Dr. Klinghardt refers to this as ?the Lyme paradox,? because in order to diagnose Lyme disease properly with one of the accepted commercial tests, you have to first treat the Lyme disease, in order for your white blood cells to be able to mount an appropriate immune response. Only then can a lab test be used to detect the presence of Lyme disease."
"An indirect test is the CD57 test. ?CD-57? is a specific group of natural killer cells that are particularly damaged by the Lyme spirochetes. Therefore, if your numbers drop to a certain level, it is an indirect indicator that you may have Lyme disease, because the only known infection to suppress CD57 is that of Borrelia burgdorferi.
Normally, your CD57 value should be over 100. If it?s lower than that, you?re infected with Borrelia. If it?s below 60, you probably have both Borrelia and Mycoplasma, and, most likely, some other co-infections."


https://www.ppt-health.com/lyme-disease-basics/dr-klinghardt-interview/
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 11, 2020, 07:49:04 AM
I've added the celltrend lab to the list under the Germany header thanks to Cursed. If one wants to explore their dysautonomic symptoms (or CFS/ME) and suspects an autoimmune origin then these auto-antibodies may be an option. This also ties in with the viral infection theory, the body responds to the infection and creates antibodies which acts at receptors of its own tissue. Be aware that there are many potential mechanisms for dysautonomic symptoms. There seems to be overlap with CFS/ME and CRPS. The CFS panel can also be done at IMD for approximately the same price.

The P/Q-type calcium channel antibody has a relatively higher prevalence to show up out of all voltage-gated ion channel antibodies in POTS in addition to the adrenergic receptor antibodies. IMD got those:

P/Q-type and N-type calcium channel antibodies. (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=150732&tx_ajdiagnostics_analyse%5Btitle%5D=Calcium-Kan%C3%A4le-AAk&tx_ajdiagnostics_analyse%5Bsynonym%5D=Autoimmun%20Lambert-Eaton-Syndrom%20Neuro&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=af2a6db5d5e4dffa847f0ae444054495)
It's under Lambert-Eaton Syndrome (https://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome) on their request form, last page (https://www.imd-berlin.de/fileadmin/user_upload/Anforderungsscheine/SI_6_seiter_Immunologie_Selbstzahler.pdf).

Autoimmune Dysautonomia Evaluation Testing Algorithm (https://www.mayocliniclabs.com/it-mmfiles/Autoimmune_Dysautonomia_Evaluation_Testing_Algorithm.pdf)

Quote from: Nas
I'm curious about two parameters: general androgens and serotonin.
I kinda like the Russian forum's theory about the SERT gene which kinda makes sense for my pure OCD and PE. I kinda wanna see that tested.

Another reason for serotonin, in addition to yours, is malabsorption (gut-related theories). I would like to see the ratio of serotonin, tryptophan and kynurenin.

Mycoplasma pneumoniae (low CD57+) or VZV reactivation in Bell's Palsy:
Frequent detection of Mycoplasma pneumoniae in Bell's palsy (https://link.springer.com/article/10.1007/s00405-003-0676-x)
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 11, 2020, 07:22:01 PM
Before spending money on medical test, it may be wise to review the following page:
https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788

A good POIS test in my opinion is to repeat the lymphocyte/orgasm test from P. Haake, et al. (2004):
(https://i.imgur.com/6u2i9Sq.png)
"the orgasm induced a moderate but statistically significant transient elevation of the cytotoxic/suppressor T cell (CD3+CD8+) numbers (Fig. 2). In contrast, the absolute numbers of T cells (CD3+), T helper cells (CD3+CD4+), and B cells (CD3-CD20+) were not affected by sexual stimulation...the levels of LPS-induced proinflammatory cytokines (IL-6, TNF-alpha) remained unaffected by masturbation-induced orgasm...The effects of orgasm on peripheral lymphocyte subsets were restricted to NK cells and had minor or no effects on T or B cell subsets and showed no effects on (IL-6, TNF-alpha) cytokine production, indicating limited and selective effects of orgasm on immune system functions in parallel with its selective and short-lived neuroendocrine effects." -Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004) (https://www.researchgate.net/profile/Uwe_Hartmann/publication/8395744_Effects_of_Sexual_Arousal_on_Lymphocyte_Subset_Circulation_and_Cytokine_Production_in_Man/links/00b7d52f8e1b80712a000000.pdf)

Another good test is to measure blood urea levels outside of POIS (immediately before sexual activity) and then again about 10min after orgasm. Try not to urinate between the two test.

Tip: you can click on the header of a quote (quote from:...) to launch yourself to the original location of that quote.
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 12, 2020, 06:36:58 AM
https://poiscenter.com/forums/index.php?topic=2545.msg32239#msg32239

All cytokines stem from different sources but yet all fall down post O. One would not expect this behaviour. Some of them shoot back up again after 1 day. They all need intracellular calcium to release cytokines. Calcium influx may be dwindling. Something could be happening to the voltage-gated ion channels.

Another idea: Measuring intracellular calcium in leukocytes before O and at least >45 min post O.

ATP, extra or intracellular, regulates calcium influx.

DAMPs (Danger signals, alarmins):
https://en.wikipedia.org/wiki/Damage-associated_molecular_pattern#Overview
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 13, 2020, 03:55:55 AM
More suggestions:

Parameter input from members (https://poiscenter.com/forums/index.php?topic=2660.0)

https://poiscenter.com/forums/index.php?topic=2301.msg34000#msg34000

In case of Fibromyalgic type of symptoms:

https://www.sciencedirect.com/science/article/abs/pii/S0165247814000133
https://www.sciencedirect.com/science/article/abs/pii/S0165572811002992
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2868257/
Title: Re: Laboratories for self testing & parameter discussion
Post by: Muon on July 27, 2020, 12:10:32 PM
Interleukin 8 in seminal plasma could be measured.

Interleukin 8 and the male genital tract (https://sci-hub.tw/10.1016/j.jri.2013.02.004)

More stuff in semen:
Patients with chronic prostatitis/chronic pelvic pain syndrome show T helper type 1 (Th1) and Th17 self-reactive immune responses specific to prostate and seminal antigens and diminished semen quality (https://bjui-journals.onlinelibrary.wiley.com/doi/abs/10.1111/bju.15117)

Small Intestinal Bacterial Overgrowth (SIBO) (https://poiscenter.com/forums/index.php?topic=3385.0) test. Solution: Lactulose. Gases: Hydrogen + Methane. Ref (https://poiscenter.com/forums/index.php?topic=2684.msg35348#msg35348)

BDNF (https://poiscenter.com/forums/index.php?topic=2545.0):
"Our data support the view that measures of blood and plasma BDNF levels reflect brain-tissue BDNF levels."
Blood BDNF concentrations reflect brain-tissue BDNF levels across species (https://academic.oup.com/ijnp/article/14/3/347/905865)

Blood plasma viscosity (https://labtestsonline.org.uk/tests/plasma-viscosity) (inflammation ---> thick blood)

vWF and fibrinogen (vWF and Factor VIII are often measured together, these two can bind):
von Willebrand factor, fibrinogen and other plasma proteins as determinants of plasma viscosity (https://www.atherosclerosis-journal.com/article/S0021-9150(98)00090-2/abstract)

Lipopolysaccharide binding protein (https://www.imd-berlin.de/leistungsverzeichnis/parameter.html?tx_ajdiagnostics_analyse%5Banalyse%5D=130838&tx_ajdiagnostics_analyse%5Btitle%5D=Lipopolysaccharid-bindendes-Protein%20%28LBP%29&tx_ajdiagnostics_analyse%5Bsynonym%5D=&tx_ajdiagnostics_analyse%5Baction%5D=showmod&tx_ajdiagnostics_analyse%5Bcontroller%5D=Analyse&cHash=0d1eafab2d23bc091ab1fded3acb4081)
"In patients with NASH, SIBO has been associated with increased levels of LPS binding protein..." Ref (https://pdfs.semanticscholar.org/dc31/1b2cdef95062d3be74f0aa85f98e114c6c70.pdf)

Premature ejaculation: Serum NE, Leptin, 5-HT. Leptin/5?HT ratio may serve as an ideal indicator for reflecting SNS activity. Ref (https://onlinelibrary.wiley.com/doi/abs/10.1111/andr.12773) 

Endothelial degranulation: vWF
https://en.m.wikipedia.org/wiki/Weibel%E2%80%93Palade_body

Leptin (https://en.wikipedia.org/wiki/Leptin), in case POIS inhibits appetite. By stimulating alpha-Melanocyte-stimulating hormone it enhances satiety.

HPV-16 (https://poiscenter.com/forums/index.php?topic=2683.msg35856#msg35856)

Reactive oxygen species (ROS)

In case of symptoms during exercise: S100B as a Marker for Brain Damage and Blood–Brain Barrier Disruption Following Exercise (https://link.springer.com/article/10.1007/s40279-013-0119-9)

In case of premature ejaculation, magnesium in seminal plasma: https://bjui-journals.onlinelibrary.wiley.com/doi/full/10.1111/j.1464-410X.2006.06320.x

Calcitonin gene-related peptide during headache (from O or from exercise). Ref (https://www.degruyter.com/configurable/contentpage/journals$002fcclm$002fahead-of-print$002farticle-10.1515-cclm-2019-1337$002farticle-10.1515-cclm-2019-1337.xml)

Brain fog: D-Lactate (https://poiscenter.com/forums/index.php?topic=3385.msg39341#msg39341)

IBS/SIBO/Autoimmunty: Anti-Cytolethal Distending Toxin (CdtB) and Anti-Vincolin antibodies (https://poiscenter.com/forums/index.php?topic=3385.msg39405#msg39405) (page 1 for lab)

Endothelin (https://poiscenter.com/forums/index.php?topic=55.msg38303#msg38303)
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on December 03, 2020, 11:23:18 AM
Ok cool but if i was to test for cytokines then I take it that it would be better to test before any reaction as I can see from your results? It makes me wonder if I was to test for metanephrines,catecholamines, plasma histamine if they would be the same as cytokine timing or not.

The cytokine ones seem quite expensive https://bloodtestslondon.com/products/interleukin-6-blood-test and theres no mention of multiple tests , how much did you pay for yours and did it include multiple readings or you bought each reading separate?

Not sure if you should generalize my results. Yes I tend to think that cytokines should be measured out of any reaction based on the results (Orgasm could be driving them down, perhaps measure stuff 24h post O, if you perform only one measurement that is). It's also possible that a subset of cytokines goes down while another subset goes up. I also tend to think that there might be something wrong with calcium signaling. I'm wondering that myself as well whether the cytokines behave the same as any other parameter or is it that another type which is elevated are driving these down, can't give you an answer. Catecholamines go up post O in healthy people, see paper in POIS paper thread, neuroendocrine response section.

The prices of the lab mentioned are going through the roof, absolute ridiculous. Compare it to the labs on the main page of this thread. I bought everything separate at IMD Berlin, you can see the prices at page 1, they went up slightly probably due to covid. Heck you might as well grab a cheap airBNB/hotel and travel to Berlin for these prices, LOL.

Oh by the way...Simon66 lives in London and measured some cytokines, you could ask him what lab he used. I know that at least 4 POISers have measured IL-6, all normal results. Doesn't mean you shouldn't measure it but the info could be helpful.

And about the serotonin...serum values don't correlate with brain levels. Serum tryptophan levels do correlate positively with tryptophan levels in the brain. I would prioritize tryptophan levels over serotonin. BDNF in serum also correlates positively with BDNF levels in the certain brain sections. Serotonin is synthesized from Tryptophan and BDNF from serotonin. If the former two are low in serum it could indicate that brain serotonin levels are low.
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Iwillbeatthis on December 03, 2020, 12:41:05 PM
Ok cool but if i was to test for cytokines then I take it that it would be better to test before any reaction as I can see from your results? It makes me wonder if I was to test for metanephrines,catecholamines, plasma histamine if they would be the same as cytokine timing or not.

The cytokine ones seem quite expensive https://bloodtestslondon.com/products/interleukin-6-blood-test and theres no mention of multiple tests , how much did you pay for yours and did it include multiple readings or you bought each reading separate?

Not sure if you should generalize my results. Yes I tend to think that cytokines should be measured out of any reaction based on the results (Orgasm could be driving them down, perhaps measure stuff 24h post O, if you perform only one measurement that is). It's also possible that a subset of cytokines goes down while another subset goes up. I also tend to think that there might be something wrong with calcium signaling. I'm wondering that myself as well whether the cytokines behave the same as any other parameter or is it that another type which is elevated are driving these down, can't give you an answer. Catecholamines go up post O in healthy people, see paper in POIS paper thread, neuroendocrine response section.

The prices of the lab mentioned are going through the roof, absolute ridiculous. Compare it to the labs on the main page of this thread. I bought everything separate at IMD Berlin, you can see the prices at page 1, they went up slightly probably due to covid. Heck you might as well grab a cheap airBNB/hotel and travel to Berlin for these prices, LOL.

Oh by the way...Simon66 lives in London and measured some cytokines, you could ask him what lab he used. I know that at least 4 POISers have measured IL-6, all normal results. Doesn't mean you shouldn't measure it but the info could be helpful.

And about the serotonin...serum values don't correlate with brain levels. Serum tryptophan levels do correlate positively with tryptophan levels in the brain. I would prioritize tryptophan levels over serotonin. BDNF in serum also correlates positively with BDNF levels in the certain brain sections. Serotonin is synthesized from Tryptophan and BDNF from serotonin. If the former two are low in serum it could indicate that brain serotonin levels are low.

Lol good thing I spoke to you seems like these London private companies want to charge ridiculous prices for everything, I will have a look around and consider making a trip. The Berlin lab prices are so much cheaper wow!
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on December 03, 2020, 01:41:23 PM
Lol good thing I spoke to you seems like these London private companies want to charge ridiculous prices for everything, I will have a look around and consider making a trip. The Berlin lab prices are so much cheaper wow!

Hotels are probably stocked if you want to book for the short term. I know an address located close to the lab (5 min walk) if you can't find a cheap place to stay overnight, it's a little expensive though. I can give you the address via PM. Patients from the CFS forum also seem to have discovered the lab and making trips.
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: berlin1984 on December 03, 2020, 02:12:58 PM
Lol good thing I spoke to you seems like these London private companies want to charge ridiculous prices for everything, I will have a look around and consider making a trip. The Berlin lab prices are so much cheaper wow!

Just a side note: Touristic overnight stay is currently prohibited in Germany (for people reading this in some years: Covid-19 pandemic)
But with an appointment at the lab, you can probably argue it's a medical (or business) reason and is therefore allowed.
(Hotels are not closed, but quite some of them have shut down temporarily)
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on December 04, 2020, 04:45:00 PM
Do you have any parameters on your mind Iwillbeatthis?
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Iwillbeatthis on December 04, 2020, 04:51:36 PM
Do you have any parameters on your mind Iwillbeatthis?

Not really, I'm not sure what to do atm as things have been better than usual.

I'm thinking to do some rounds of rifaximin to fix my remaining gut issues, I'm hoping the gastro I'm seeing will prescribe but it if not then I will order some from online.
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Iwillbeatthis on December 04, 2020, 04:52:47 PM
Do you have any parameters on your mind Iwillbeatthis?

If I decide to go to berlin I will get all the tests that Dr suggested plus probably some extra ones
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on January 01, 2021, 12:55:25 PM
Celltrend offers a new test for autoantibodies involved in Small fiber neuropathy:

Small Fiber Neuropathy (SFN)
Small Fiber Neuropathy (SFN) is a subtype of neuropathy that is characterized by the selective involvement of non-myelinated or thinly-myelinated sensory fibers is marked. Its pathogenesis includes a wide range of immune-mediated, metabolic, toxic, hereditary and genetic disorders. SFN has been described in connection with Sjögren’s syndrome, celiac disease, systemic lupus erythematosus, rheumatoid arthritis, diabetes mellitus type 1, inflammatory bowel disease, sarcoidosis and paraneoplastic syndrome. Some data also suggest an association with Hashimoto’s thyroiditis. Clinical symptoms of SFN can manifest as isolated sensory disorders as well as isolated autonomic disorders.

Intravenous immunoglobulin therapy (IVIG) showed a significant effect in treating patients with autoimmune mediated SFN in two large retrospective studies with comparable response rates (77% and 83% of patients).

Autoantibodies against fibroblast growth factor receptor-3 (FGFR3-IgG) and tri-sulfate heparin di-saccharide (TSHDS-IgM) are elevated in SFN. A clinical study is currently evaluating the efficacy of IVIG administration in FGFR3-Ab and TSHDS-Ab positive patients.

FGFR3 auto-antibodies
TSHDS auto-antibodies

POISers should investigate their own individual immune/hormone profile in my opinion.
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on January 13, 2021, 04:08:00 PM
If anyone is interested in the antioxidant profile I took, here is a link to the test and also documentation:

https://biolab.co.uk/index.php/cmsid__biolab_test/Antioxidant_Profile
https://www.biolab.co.uk/docs/antoxpr.pdf
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Iwillbeatthis on January 13, 2021, 05:41:29 PM
I'm homozygous for the sod2 rs4880 gene, (super oxide).

When I had this chronic infection from 2018-2019, I would wake up feeling like death in the mornings, the worst brain fog, autistic symptoms, feeling brain dead and l arginine cleared it so that indicates it was some type of nitric oxide/oxidative stress disorder. I still have this going on sometimes outside of POIS but much less severe.

I've tried lots of things to combat oxidative stress: NAC, liposomal glutathione, exercise, agmatine sulfate, l arginine and in the end most weren't very helpful.

However Sulforaphane doesn't compare to any of these things above and it is a game changer for me so far.
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on February 04, 2021, 10:02:45 AM
A new lab has been added for the USA; DirectLabs. Thanks to the folks of the phoenix rising forum (https://forums.phoenixrising.me/threads/discriminatory-cytokine-profiles-predict-muscle-function-fatigue-and-cognitive-function-in-patients-with-myalgic-encephalomyelitis-cfs.81197/).

Redlabs got new parameters like IL-33:
USA: https://drive.google.com/file/d/16rFnpPwKLiiXufaTeZkh2vN62SoOCOnh/view
Belgium: https://drive.google.com/file/d/1YBnZhO7yWYWHf17H23SimWHUOTzD_DA-/view

Edit: Added a hyperlink to the lab list from phoenix rising to the top of the thread on page 1:
https://mecfsroadmap.altervista.org/#testing-laboratories
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on February 05, 2021, 06:02:02 PM
Suggestion: Parameters involved in muscle wasting can be collected from papers:

Cytokine driven muscle loss:
https://en.wikipedia.org/wiki/Cachexia
https://en.wikipedia.org/wiki/Sarcopenia

Cytokines and cachexia (https://www.sciencedirect.com/science/article/abs/pii/S0899900797001858)
Cachexia (https://www.acpjournals.org/doi/abs/10.7326/0003-4819-133-8-200010170-00015)
Geriatric cachexia: the role of cytokines (https://academic.oup.com/ajcn/article/70/2/183/4431036?login=true)
Waste management—Cytokines, growth factors and cachexia (https://www.sciencedirect.com/science/article/abs/pii/S1359610106000554)
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on February 10, 2021, 02:04:59 PM
Dr Theoharides suggested checking folate auto antibodies for me considering I react to all forms of folate and have a folate deficiency
What lab provides this test?
http://iliadneuro.com/ he said it was the only lab in the world that does this test.

Paywall...
Chapter 184 - Vitamin-responsive disorders: cobalamin, folate, biotin, vitamins B1 and E (https://www.sciencedirect.com/science/article/pii/B9780444595652000496)

Folate binding protein?
Studies of the role of a particulate folate-binding protein in the uptake of 5-methyltetrahydrofolate by cultured human KB cells (https://www.sciencedirect.com/science/article/pii/S0021925818956796)

Are The Levels Of Antibodies Stable Over Time?:
"Antibodies tend to fluctuate over time. The causes are not always known. In some cases the increased intake of cow's milk elevates the levels of the antibodies and removal of milk from diet tends to lower the levels in some children."
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on February 21, 2021, 01:48:09 PM
IBS testing
Anti-CdtB
Anti-vinculin
https://www.ibssmart.com/  (Countries (https://www.ibssmart.com/ibs-test-available-internationally))
https://chriskresser.com/is-ibs-an-autoimmune-disease/

GI map
https://www.diagnosticsolutionslab.com/tests/gi-map
USA
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on April 19, 2021, 09:20:35 AM
Some of endothelium-derived substances (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4660468/table/T1/)
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on May 16, 2021, 01:45:06 PM
Online pharmacy update, link can be found on page 1 at the bottom (credits to Hip):

List of Reliable Prescription-free Pharmacies (https://forums.phoenixrising.me/threads/tips-for-finding-reliable-and-trustworthy-prescription-free-online-pharmacies.8113/)
Title: Re: Laboratories, online pharmacies & parameter discussion
Post by: Muon on May 18, 2021, 09:03:06 AM
I see people here who used a PCR test for infection diagnostics. You need to ask how many cycles they ran. It's designed to run 20-24 cycles as far as I know. Results become less accurate when you run more cycles, more chance for false positives.