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

well, i have booked my ticket to brussels (from the U.S.) and my appt with KDM is april 11-12. i will report back after the trip.

my trip will be about 20+ hours total. yikes. i need to find a way to keep this gcmaf cold, if possible, so it does not lose potency.

how did the patient who traveled to hong kong from brussels do it?

should i buy an extra cooler bag, like for keeping beer cold on a picnic? i just asked kdm's office this.

rrrr

Rrrr said:

well, i have booked my ticket to brussels (from the U.S.) and my appt with KDM is april 11-12. i will report back after the trip.

my trip will be about 20+ hours total. yikes. i need to find a way to keep this gcmaf cold, if possible, so it does not lose potency.

how did the patient who traveled to hong kong from brussels do it?

should i buy an extra cooler bag, like for keeping beer cold on a picnic? i just asked kdm's office this.

rrrr

Click to expand...

You should contact DHL, I know they provide their customer with dry ice packages, but I think the request must come from a professional.
http://www.pangas.ch/international/web/lg/ch/likelgchpangasfr.nsf/repositorybyalias/dhl_solution_126/$file/DHL_Solution_126.pdf

http://www.dhl-usa.com/custserv/faq.asp?PageID=TH&nav=FAQ/ThermoExpress

Rrrr said:

thanks, sushi!

i think a few folks just came back from KDM. can you tell us, did KDMs office offer you dry ice? or did you have to make a special trip (15 min car ride away from KDM's office) to get it yrself???

Click to expand...

Hi Rrrr,
they just give regular ice-packs from the clinic (not dry ice). It was sufficient for me.

IMHO I don't think GcMAF will lose too much potency if kept defrosted for 24 hours. Just make sure you collect it just before you head back to the US. A cooler bag and some regular ice-packs should be ok I would have thought.

Ice Ice Baby...

My batch of GcMAF was carried in a big flask with some ice cubes acquired from very nice staff at the airport - maybe this could be an option for you? that way you can pass through security easily and collect your ice once your on the inside boarding areas. It worked very well to keep the product forzen.

I've been dipping in here when able to see how you are all getting on with this treatment. In one breath it is so heart-warming to hear of your improvements and, in another, heart-breaking to tell you that after 20 injections I am not any better- I feel worse. I hope I will not weaken anyone's hopes in saying this as it would appear to be helpful to many people.

Thanks to each of you for sharing your information and continued improvements to all.
:In bed:

is kutapressin routinely given with GcMAF and whats the cost and where can i source it from?

cheers!!!

sphynx on roundabouts said:

My batch of GcMAF was carried in a big flask with some ice cubes acquired from very nice staff at the airport - maybe this could be an option for you? that way you can pass through security easily and collect your ice once your on the inside boarding areas. It worked very well to keep the product forzen.

I've been dipping in here when able to see how you are all getting on with this treatment. In one breath it is so heart-warming to hear of your improvements and, in another, heart-breaking to tell you that after 20 injections I am not any better- I feel worse. I hope I will not weaken anyone's hopes in saying this as it would appear to be helpful to many people.

Thanks to each of you for sharing your information and continued improvements to all.
:In bed:

Click to expand...

sphynx, i'm so sorry to hear of your worsening condition! that is horrible. do you attribute that to the horrible yet "usual" ups and downs of me/cfs (i can have a bad relapse that will 6 months at a time), or do you attribute your worsening to gcmaf? are there ANY signs of improvement in any area? and what are the signs that you are worsening?

lastly, regarding your travels with gcmaf: how long was your trip in terms of hours (from KDM office to yr home), and did your gcmaf remain frozen, or just cold?

also, it sounds like you brought the gcmaf onto the plane, hand carrying it. i was going to pack it in my luggage. is it better to hand carry it, do you think?

rrrr

heapsreal said:

is kutapressin routinely given with GcMAF and whats the cost and where can i source it from?

cheers!!!

Click to expand...

KDM put me on GcMAF as well as Nexavir, which I understand is the same as Kutapressin. (Plus antibiotics, vitamins and several other meds). I find the Nexavir hugely expensive. I got it from:

Kalida bv
Noordstraat
4641 SE Ossendrecht
The Netherlands
Email: info@kalida.nl
Contact person: carine.kalida@hotmail.com

KDM recommends 2cc injected subcutaneously daily for the first three months. At Euros 150 per bottle, you will need 9 bottles for the first three months, which is Euros 1350.

I believe that after this, the dose can be reduced but I'm not sure to what level.

Hope this helps!!

Rrrr said:

well, i have booked my ticket to brussels (from the U.S.) and my appt with KDM is april 11-12.

Click to expand...

We're seeing him on the 12th too!

ukme said:

We're seeing him on the 12th too!

Click to expand...

great! what time? i'll be there 8-12:30. where are you staying? others on this forum recommended the Eurovolley hotel, so that is where i'll be.

http://www.eurovolleycenter.be/frame_E.htm

someone told me: "This is one of the hotels recommended by KDM's office. It is the closest. It is a sports center with a small hotel attached. It is not close to restaurants other than its own, but it is close to KDM, will pick you up from the airport and drop you at the clinic--for a small and reasonable fee." i asked them the fee for the trip to the clinic and it is only 4 euro. and it is 15 euro for the hotel's shuttle from the airport to the hotel. this is what the hotel wrote to me:

For pick-ups the procedure is as follows:
As soon as you arrive at the airport call us at: 02/257 16 16. It takes us 10 minutes to reach the airport, just the time to take your luggage.
As it is very difficult to find a parking space, we arrange pick-up, outside, at the most right exit on the DEPARTURE floor just in the curve of the road where it turns to get away from the airport. There are some “Kiss and go” parking spaces.
Our pick up Van is a dark gray Peugeot Expert. On the side there are pictures of the hotel.
We only pick-up from 07:00 till 22:00
The cost of the pick-up is per trip, so 15€ for the 2 of you. If you take a taxi it will cost you +/- 20€.
Tell the taxi-driver we are situated near to VTM (This is a big TV-channel of Belgium)

We are very familiar with the Himmunitas Clinic and bring a lot of clients to this doctor.
We now to proceed, a trip to Clinic costs you 4€. The Clinic calls us to arrange a pick-up for you back to the hotel. You will see that everything will proceed smoothly.

Thermos for traveling home with gcmaf

i am researching thermoses and found this one (it is the biggest one i can find!)

http://www.amazon.com/Thermos-Nissan-Stainless-Bottle-Folding/dp/B000U8D0H2/ref=pd_sim_k_3

a question for those who already got their KDM GcMAF:

do you think the gcmaf will fit inside this? i really don't know how big the gcmaf is and if it comes in separate vials or a package of vials, etc.

again, will the gcmaf fit inside this thing? (there are some good photos that let you see the top ofthe thermos)

the reviews seem great!

heapsreal said:

is kutapressin routinely given with GcMAF and whats the cost and where can i source it from?

cheers!!!

Click to expand...

heaps,
People were getting Nexavir (used to be called kutapressin) from Bio-Mer in New Zealand.
It's extracted here, from pigs liver, or it used to be. I think the label Nexavir is owned by a Texas company, but it's the same product. Parts of Bio-Mer's website are down - they're in Christchurch and may not be fully up and running right now.
Cost is approx $500 US per month I think.
Are you a member of the not crazy forum? A search there might tell you a bit more.
Anne.

PS I want to know how KDM is getting on with plans to offer gcmaf in Aus! ))

heapsreal said:

is kutapressin routinely given with GcMAF and whats the cost and where can i source it from?

cheers!!!

Click to expand...

In the U.S.

Johnson Drug
577 Main St
North Waltham, MA 02452,
(888) 335-5577
www.johnsondrug.com

@ Rrrr

Do you know the price Johnson Drug charge and do they ship internationally?

Also, GcMAF comes in small individual plastic vials, with a screw-top. Assuming you would want a three-month supply, and therefore 12 vials, I would say that that thermos is fine.

Thanks!

Rrrr said:

how did the patient who traveled to hong kong from brussels do it?

Click to expand...

Rrrr I answered you on email (i can share it on here if anyone wants).

Rrrr said:

do you think the gcmaf will fit inside this?

Click to expand...

The gcmaf vials would definitely fit inside this (huge) flask.

Hi Everyone,

Just reporting in. Several have mentioned having a "slump--harder time" after about the 7th shot. This is happening for me. I have had 8 and the weeks after the 7th and the 8th have been the most difficult so far.

However, I got my basic labs back and my vit D 1.25-OH has gone from 52.00 pg/mL to 37.64 pg/mL and my Vit D 25 OH has gone from 34.70 ng/mL to 47.80 ng/mL. We think this is going in the right direction. Calcium and phosphorus have stayed right in the middle of the normal range.

Anyone else have labs to compare?

Best wishes all you fellow piggies!
Sushi

Sushi said:

Several have mentioned having a "slump--harder time" after about the 7th shot. This is happening for me. I have had 8 and the weeks after the 7th and the 8th have been the most difficult so far.

Click to expand...

same here. I haven't got any labs back to compare yet.

Rrrr said:

sphynx, i'm so sorry to hear of your worsening condition! that is horrible. do you attribute that to the horrible yet "usual" ups and downs of me/cfs (i can have a bad relapse that will 6 months at a time), or do you attribute your worsening to gcmaf? are there ANY signs of improvement in any area? and what are the signs that you are worsening?

lastly, regarding your travels with gcmaf: how long was your trip in terms of hours (from KDM office to yr home), and did your gcmaf remain frozen, or just cold?

also, it sounds like you brought the gcmaf onto the plane, hand carrying it. i was going to pack it in my luggage. is it better to hand carry it, do you think?

rrrr

Click to expand...

Hi Rrrr,
Good luck with your trip, we are all different and just because it's not working out well for me does not mean that it will not be a success for you. It's the neuro symptoms that are so much worse for me with the gcmaf. I had made small brief improvements that disappeared. However we have to keep trying and so I just hope things will improve for me.

Your flask looks much better than the one used for my medicine. After 10 hours in the flask it was still frozen. Make sure to pack the thermos to capacity with ice or even anything because leaving a big space of air will make it defrost quicker. Hope that helps a bit.

Hey Rrrr,

I have the nissan and the reviews are true! If I put hot tea in there and I forget about it for 2 days (not uncommon with my brain) it's still borderline hot!

In fact, the biggest concern with the thermos is that you might unexpectedly burn yourself I've seen it happen several times

Rrrr said:

i am researching thermoses and found this one (it is the biggest one i can find!)

http://www.amazon.com/Thermos-Nissan-Stainless-Bottle-Folding/dp/B000U8D0H2/ref=pd_sim_k_3

a question for those who already got their KDM GcMAF:

do you think the gcmaf will fit inside this? i really don't know how big the gcmaf is and if it comes in separate vials or a package of vials, etc.

again, will the gcmaf fit inside this thing? (there are some good photos that let you see the top ofthe thermos)

the reviews seem great!

Click to expand...

QUOTE
I dont know how relevant this is but i thought i'd mention it anyway. About 2 months before all my ME problems started i got the Flu Vaccination and Antibiotics for Acne on the same day. I have always since wondered if that pushed me over the edge. Anyway, Acne cleared up and i had all but forgotten about Acne until a few weeks into GcMAF it started to appear again. It's not as bad as it used to be by a long shot (bare in mind i'm now 30!), but i'm wondering if my immune system is now finally having a response against the anti Acne Bacteria which probably rose to chronic levels and has stayed put thorough my 9 years of ME. It may be a total coincidence of course.

RESPONSE
I understand skin erruptions are normal for GcMAF. I had them big time and still have them but they have calmed down. FYI-There is a large US class action suit going on for people seriously affected by the drug accutane right now. They are signing up members at this time.