GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

[Sushi]

I emailed VIPdx to ask if they planned to offer a VDR test, and they said emphatically NO. Also they won't help with shipping to Belgium.

Sigh.

Sushi

 

[Alexia]

Sorry for my ignorance but what is a VDR test?
Oh I really feel very ignorant reading this discussion. You seem to know and understand SO much! I just can't follow it or sometimes I even don't know what you are talking about..

 

[Sushi]

Sorry for my ignorance but what is a VDR test?

Hi Alexia,

The VDR test is a genetic test of the Vitamin D receptor. Whether or not two alleles (like the "letters" in the genes) have mutations (polymorphisms) seems to be important in predicting how well GcMAF will work.

Don't worry about not following the meaning of everything in threads--we are all learning and there is a huge amount of information on this forum. We learn little by little--the hard way.

Sushi

 

[Sushi]

Moreover my blood was drawn for cytokine profiles. The waiting game starts for me now.

Hi Diesel,

Thanks so much for this report. It is very encouraging.

I believe that RedLabs offers several cytokine profiles. Do you know which one KDM has ordered for you? Sergio would like to try to get blood drawn for a cytokine profile from VIPdx before he returns to Spain (a week) as some of the RedLabs tests are hard to do from Spain.

It is very interesting that he tests for Nagalase.

I really hope you get positive results on XMRV--yes, the waiting game is awful!

I hope we, in the US, can figure out how to get blood to RedLabs or match some of the tests in the US. VIPdx does a number of the tests but the VDR test may be hard to get unless KDM would prescribe GcMAF with only the Genova report on the Bsm.

Hope your tests come back soon and you can start treatment specific to the results--like hopefully GcMAF.

Thanks again for the quick report.

Sushi

 

[Sushi]

Hey Sushi,

If I were seeing KDM, I wouldn't risk not having the full results just in case he says he can't make a complete determination without the Fok. Perhaps you can get the Redlabs requisition filled out with KDM as your requesting physician (with his permission) before you go and then just get the blood drawn after you touch down in europe? You only need 2ml whole blood in EDTA tube for the test, so it shouldn't be too difficult getting any commercial lab to do it for a lab-draw fee.

Hi Joey,

I plan to go directly to Brussels from the US, so I might as well get the blood drawn in his office unless we can figure out a way to ship blood to RedLabs from the US and maybe pool shipment costs.

Chris, would you mind sharing how you successfully sent blood to them from the States? FedEx was very fuzzy about what was required or if you could even do it. They said you needed a certificate from the Belgian Ministry of Health! I did find out the pak you need to use--UN3373--but as far as labeling and customs forms, they couldn't tell me. Redlabs (by phone) also couldn't give clear instructions.

Another patient in Asia also phoned both RedLabs and FedEx and couldn't get clear instructions or an assurance that you would be able to successfully send blood.

Thanks,
Sushi

 

[Alexia]

Sushi,

Thank you for the explanation and your friendly words. I will read the posts again with that information in mind.

 

[filfla4]

Four days to go and counting!!!! On Saturday I'm travelling from Malta (where I live) to Brussels and I have my first appointment with KDM on Monday morning!! I have waited so long for this. A whole barrage of tests will be done over two days and I travel back on Thursday - hope I survive the trip!

Thanks for all this info. I will update you on how it went when I get back home.

 

[serg1942]

To Diesel and Garca

Hi Diesel,

Thanks so much for the report on your visit with KDM. I am visiting him at the end of January, and your post is very encouraging…Time will tell! I wish you the best for the XMRV status...If we find many negative patients, all PWCs loose, because, for the XMRV to be the "clue", it needs to be present in most of PWCs...(of course we have to assume that there's going to be a percentage of people with a wrong diagnose, but maybe for them it is not that bad not to have a retrovirus...possibly it's even better...).

Hi Garca,

Thanks for your thorough message! Well, I am really confused now…Why do you think now that BsmI BB is the mutation? It is what I previously thought, but I read after your post that the capitals for the alleles mean dominant genes, and that dominant genes are “normal genes”.

So, from the study done on GcMAF and VDR polymorphisms, how can we conclude that they have changed the nomenclature, that is, BB=mutation, bb=wild type or “normal”?

Well, as joey says, as soon as someone has the results of the VDR test offered by Redlabs, we will clarify this thing…But in the meanwhile, a bit of hope wouldn’t be bad!

As for the reliability of Yasko's test, I have to say that I have analyzed the COMT and MTHFR status by Yasko and also by a laboratory in Switzerland, and they match...Again, we'll see...

Saluditos,
Sergio

 

[garcia]

Hi Garca,

Thanks for your thorough message! Well, I am really confused nowWhy do you think now that BsmI BB is the mutation? It is what I previously thought, but I read after your post that the capitals for the alleles mean dominant genes, and that dominant genes are normal genes.

So, from the study done on GcMAF and VDR polymorphisms, how can we conclude that they have changed the nomenclature, that is, BB=mutation, bb=wild type or normal?

Apologies for the earlier confusion Sergio! I just assumed that BB would be the normal and bb the mutation (as for most other snps). But Joey corrected me, and so I looked it up, and it appears he is right. I looked up in a few papers on VDR Bsm and from what I could gather bb was the normal.

For example in this paper looking at the Japanese:
http://ajrccm.atsjournals.org/cgi/content/full/160/4/1107

In the patients with sarcoidosis, the BB, Bb, and bb genotypes accounted for 1.0%, 37.6%, and 61.4%, whereas in healthy control subjects the figures were 1.0%, 20.0%, and 79.0%, respectively

From this reference here looking at babies in france:

As shown on Table 1, the Bsm I alleles frequencies in the 589 healthy infants living in the Paris area are roughly similar to those earlier reported for other Caucasian populations (7). BB alleles were found in 1314% of the infants, while the bb alleles were found in 3439%.

Also remember this is Genova who told Joey this, and they are reputable company who know about genetics.

Well, as joey says, as soon as someone has the results of the VDR test offered by Redlabs, we will clarify this thingBut in the meanwhile, a bit of hope wouldnt be bad!

As for the reliability of Yasko's test, I have to say that I have analyzed the COMT and MTHFR status by Yasko and also by a laboratory in Switzerland, and they match...Again, we'll see...

Saluditos,
Sergio

I think the Yasko results are reliable IMHO, but yes we'll await confirmation.

 

[Crappy]

I am new to social media. I get confused trying to follow the posts for GcMAF since I learned about it. On this site alone I see a forum relating to it as "GcMAF trial", "The State of Play" and this one too. Hard to keep up with; are there others?

I have been ill since 2000. I played in Lake Tahoe area in the 80's. I identify with a lot of you here, as far as, health problems; medication issues; incompetent practitioners, and of course meteoric medical fees.
We pay them to experiment on us; something is wrong with all aspects of this picture.
Defense Contractors get all the money they want. Multi million dollar planes that never fly, $1000 hammers, and employees that go to work to get sleep.

So CFS people get screwed by Drs, Labs and Tax Dollars. (Seems like we would at least get better service, instead of fourth class citizenship.)

Priorities are a mess when the Science of Killing receives much more money than the Science of Easing Suffering, and giving people their life back. I have to say, looks like humans are the most ignorant of all creatures. We need to stop Killing, and Patting or selves on the back, and do something productive; but I guess quarreling like two year olds is what humans do best! If I was God, I'd hang myself.

I digress.

I just intended to confer for understanding, lets see if I have this right?

I know Yasko too.

- = No Mutation. + = Mutation, Capital like B or F by other labs means Mutation too? Lower case like f or b by other labs means No Mutation?

So; -- = No Mutation can be ff or bb; ++ = Mutation can be FF or BB? right so far? Taq normally equal Bsm, so Yasko does not test Bsm for cost reasons, and you likely already have the answer with Taq?
Further, B or b stands for Taq (or Bsm) and is always the last in the sequence, as in BB or bb or Bb, or even bB?
Fok is always stated first and is identified by F or f. Can be FF, ff, Ff or fF? Correct?

So Dr. Ruggiero's paper simply stated:
FF/bb is: + + Fok (Mutation); and, - - Taq (Bsm) (No Mutation) {Homozygous} by Yasko.
Ff/Bb is: + - Fok (Single Mutation); and, + - Taq (Bsm) (Single Mutation) {Heterozygous} by Yasko?
ff/BB is: - - Fok (No Mutation); and, ++ Taq (Bsm) (Mutation) {Homozygous} by Yasko?

I see no option for fF/bB, so maybe that does not exist anywhere in reality? We can take comfort in the fact we are all mutants of some kind though

If there are problems with my analysis let me know.

I would also like to keep abreast of what Drs. Meirleir and Cheney are currently up to?

Hopefully none of this will matter long, and some one will figure out how to make GcMAF work on all VDR types, there has to be a way.

 

[guest]

I believe that RedLabs offers several cytokine profiles. Do you know which one KDM has ordered for you? Sergio would like to try to get blood drawn for a cytokine profile from VIPdx before he returns to Spain (a week) as some of the RedLabs tests are hard to do from Spain.

It is very interesting that he tests for Nagalase.

• PERFORIN EXPRESSION ASSAY

• CD57+/CD3- ABSOLUTE CELL COUNT

• SOLUBLE CD14

• Proinflammatory cytokines IL-1b, IL-6, IL-8, IL-10, IL-12p70, TNF, TGF-b1, MIP-1b, MCP1

• VDR polymorphisms Fok1, Bsm1

• Detection of the Xenotropic Murine leukemia Related Virus in culture. Includes detection of other MLV-related viruses by PCR + Serology XMRV

• Nagalase Activity (is not printed on the REDLAB form but they handwrite it there and make a cross)

 

[Sushi]

Thanks so much Diesel,

I can now compare this to what VIP offers and they do have an inflammatory cytokine profile that is very similar.

Though it may be hard to get the full VDR before seeing him, at least I can have cytokines and I already have XMRV + from VIP.

So, he didn't test you for RNase-L or Elastase? Or maybe you have done those before....

Thanks again, and cheers for the waiting game. How much of our lives have we been "waiting?"

Sushi

 

[serg1942]

Garcia and Diesel

Hi Garca,

Don't worry, I prefer to know truth! Thanks for the papers you're posted. Yes, according to them it seems pretty clear that BB for Bsm are the polymorphisms...So let's see how GcMAF works for BBFF (mine), as this is a combination that wasn't studied...

Hi Diesel,

Thank you very much for you detailed list of tests. I will be in Spain next week, and I am thinking in going and coming to Redlabs the same day, to have done the tests ahead of time, for my visit with KDM at the end of January...(Please, if there's some other test you think he'd like to have by default, I'd appreciate so much if you could tell me... I think a complete blood work at least...And not sure about R-NASE-L and Elastase...)

Saluditos,
Sergio

 

[guest]

Sushi
serg1942

These were all tests KDM did this time (+a neurotoxin test for 10€, is this his H2S test?). On my last visit 2 years ago he also tested Elastase and RNase (elastase was increased and RNase was dysfunctional) but maybe he stopped testing for these.

 

[consuegra]

Shipping samples to UK and Belgium

I ship internationally with FedEx. I buy insulated shipping boxes off the internet. I have smaller medical ones, which are designed for blood vials, and a larger one, in which the smaller one fits. I line the bottom of the larger insulated box with folded paper towels and place the smaller box with the vials in it on top of the paper towels and then put more paper towels on top of the vial box. On the very top I put the requisition. In this way, the sample gets to its target in good shape. I have done this six of seven times.

The above description is for ambient blood. I have not shipped frozen or spun samples. In those cases one would need the help of a good phlebotomist or a compliant lab. For instance the cytokine panels at Redlabs BE need to be spun and frozen samples. The VDR is ambient blood.

FedEx will supply you will an International Waybill. This gets filled out with the necessary information. The important thing is to check “International Priority”. Also the description of the contents is “Non-infectious human blood sample” or “Non-infectious blood sample for diagnostic purposes”. This waybill is put on the outside of the box in a plastic sleeve provided by FedEx.

It is also necessary to fill out a “commercial invoice” in triplicate. FedEx will supply the form. The same description of the contents is written on this form. I place the value of the item at $1. It also asks for weight and measurement of the box. This triplicate form also goes in the FedEx pouch on the outside of the package.

FedEx also has International Medical pack for smaller packages or if one wanted to skip the step of using the larger insulated box.

I ship on Mondays to assure that I do not run into a weekend. These shipments are not cheap costing up to $100.

I do not put any marking on the outside of the box unless it is a stool sample which needs the UN 373 label clearly visible.

I have never had problems with customs except one time where I failed to write the word “human” regarding the sample. FedEx called me and then it went right through customs.

I arrange for the blood draw later in the day as FedEx international shipment go out at night. The plane leaves MSP at around 8 and goes through Memphis or Indianapolis on its way to Paris or London. You can track the flight. International priority arrives in under two days.

Frankly I think de Meirleir's GcMAF is available in the United States. The process just needs to be reversed.


Chris

http://cfspatientadvocate.blogspot.com

 

[vli]

Personally I'm not that worried about the packaging, labels, etc. as I've sent urine to Genova (from Hong Kong) numerous times. My problem is not knowing whether Belgian customs are as easy-going as the US's and having to get the blood to Redlabs in 72 hours (yes 72; I know the test form says 48 but Redlabs personally told me, that with me being in Asia they'd accept blood within 72 hrs). I'll just have to send it off anyway on the hope that Belgian customs don't open it up or otherwise cause any other delays.

 

[consuegra]

Well as I said, when I send samples in this fashion, I have had no problem with customs in Belgium. The samples arrive within 48 hours.

Actually the samples that I send to Belgium go through customs in Paris. So I should restate my experience saying that I have had no problem with customs in shipping samples to Europe.


Chris

http://cfspatientadvocate.blogspot.com

 

[vli]

Oh, OK. Well thanks a lot! Sorry I didn't read your post properly (tired; sorry... )

 

[Sushi]

Thanks for that detailed info Consuegra,

So you didn't use the UN373 pak for blood? You mentioned that "FedEx also has International Medical pack for smaller packages"--are you referring to the UN373? I thought you needed that for all biological samples. I would be just sending blood for the VDR so it wouldn't need special prep.

Your info makes the "risk factor" in sending much lower. It is much appreciated! If KDM does prescribe GcMAF for me, I'd try to bring as much back to the States as possible. If I need more, I know he ships it frozen to some countries and hopefully he can do this to the States too.

Thanks a lot.

Sushi

 

[serg1942]

Hi everybody,

I have decided to fly to Belgium on November 25th, have my blood drawn, and come back to Spain the same day (It seems very complicated to prepare the blood to be sent from Spain to Belgium, for most of the tests Id like to have done beforehand).

Well, thanks to the list of tests that Diesel posted (thanks Diesel!), I have decided to run the following ones:

- Soluble CD4 (SCD14)
- C4a serum levels (C4AS)
- Proinflamatory Cytokines (CYTS)
- VDR Polymorphisms Fok1, Bsm1 (GVDR)
- Nagalase activity
- Th1/Th2 cytokines (CYTH)

I analyzed recently in the USA the NK function, XMRV, and a lot of other important infections, so these tests results will be very worth it for KDM as well .

So, given the fact that I am enough crazy to push myself so much (as I will be traveling to Brussels just 7 days after coming from the USA, and I am almost bedridden) to go to Brussels to run tests in advance of my KDMs appointment (at the end of January), I would not like to miss some important testSo, What do you think guys about R-Nase L, and Elastase? They are very expensive, but in the past were hallmarks for KDMs treatment and assessmentCould you think in other worthy tests? (money, of course, is an issue for me I just want to do this as wise as possible).

Thanks!,
Sergio