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

[maryb]

vli - I would guess full sedation would be a general anaesthetic? I had this for an endoscopy I had a couple of years ago, I just didn't want to be brave and do the swallowing thing! Good on you. Much quicker recovery time for this.

 

[mojoey]

Froufox,

Are you doing tx back in the UK? Or are you staying near KDM now?

 

[mojoey]

Haha you guys are funny.

Let's not fight for dibs over a public spreadsheet that took 3 minutes to create

I just hope some serial defender of big pharma comes in and deletes all our data. *KNOCK ON WOOD* I'm just trying to remember to back it up every chance I get

Hi Sushi, many thanks for keeping us updated with your experiences. Very interesting! Just to say it was Joey who created the spreadsheet. I just keep linking to it, talking of which, here it is again:

Joey's GcMAF Spreadsheet

 

[undcvr]

Or maybe lock it so that only everyone's whose name is on there only can edit it. From the looks of it, it looks like all almost all of you have had some kind of progress on it. And now for the 65million dollar question ....

 

[mojoey]

That would be difficult because of google doc security issues. If everyone that's on the list requests an invite to edit, I can do it, but for me to invite everyone I could only send requests to gmail accounts.

Basically it'll only work if everyone on that list is willing to request an invite.

I think backing it up daily will be ok

 

[froufox]

Froufox,

Are you doing tx back in the UK? Or are you staying near KDM now?

Hi Joey

Yes I'm self-treating here in the UK...i was only in Belgium for a couple of days for my first consult. Ill be going back to Belgium for a follow up consult next month.

 

[RivkaRivka]

hi all,

i have sent judy mikovits and jamie deckoff jones of WPI the link to our graph of 15 gcmaf patients. (found here: https://spreadsheets0.google.com/cc...WzIsbWaN4iN1pWWw&hl=en&authkey=CIH8jqcC#gid=0)

please go update your current status with how you are feeling *now* and mention any good signs you have noticed in yr time treating with gcmaf.

perhaps if we make a good case that many of us are seeing good results that will pique their interest and motivate WPI to do a clinical trial.

(i know this is easier said than done!! and also please do not think that i have any inside knowledge or that either woman has said WPI could do a clinical trial with gcmaf. i'm just being hopeful!)

xxoo
rivka

 

[Nabo]

Hello,

I started gc maf in december 2010.
I have taking 8 shots.
And now i feel really bad.
Al my symptoms are getting worse!!
Headache fatigue etc...

Does anyone has the same??

 

[filfla4]

Hi Nabo,

I'm sorry to hear that your symptoms are getting worse. However KDM did tell me to expect to get worse before getting better.

I'm having problems of a different kind, which I don't attribute to the GcMAF but the heavy antibiotics which are part of my KDM treatment - my bowels are very very irritated!! (I'll spare you all the details!)

Wishing you strength and a quick improvement!!

 

[Rrrr]

NABO: I'm so sorry you are feeling so sick. Did you feel better at any time on the GcMAF? I see from the chart that you are on KDM's GcMAF. Did you tell him that you feel worse? What did he say? I think a lot of us will feel worse due to IRIS. I just wonder how to address the IRIS. Do you think it is IRIS?

FILFLA4: Please be careful with antibiotics, as some can cause C-Diff, which is not good. Ask your doctor? Be sure to take lots of probiotics...?

 

[cansado]

Yes Nabo are you getting the shots @ Himmunitas? If I were you I would contact the nurse and he usually contacts the Prof about it. So you will get a response. I can give you his email adres if you want. (PM)
I was feeling kind of worse in the beginning as well, then I didn't have any response except for the day after (bad). And now, after 25 shots I seem to feel a little better at times. Very slowly though. I still experience horrific periods but less horrific than before. So I am focusing on the positive. Hang in there!!! Take care.

 

[Cloud]

Wow, congratulations to all you sojourners for making the destination. I feel as though I'm reading an adventure story of which I have a deep personal connection. I am hoping the best for all of you and feel eager to follow along with you on this journey....plus, I may have a place to stay in Belgium and end up over there with you.

And filfla, I too am very interested in this "chronic inflammatory disorder". I appreciate your sharing on this as well. And holy moley....10mg of HydroxyB12?? I'd be through the roof manic.

 

[aquariusgirl]

hi folks
Am I right in thinking all costs are out of pocket?
If you are an EU citizen, can you use your E1 .. I think it is called...to defray any of the costs. say, like the stomach biopsy?

Also I'm curious how any of you got your docs to transfuse you with an experimental blood product.
I just can't see many US docs doing that. Their licences and all that.

Thanks.

 

[filfla4]

Rrrr - yes thanks for that. Emailed KDM's clinic and I got a response a couple of hours later (he's in Australia!). He's told me to add a second probiotic. I thought the Mutaflor would be enough but clearly it's not. My stomach's been terrible for two days but now is ever so slightly better. At least I have a vague appetite.

Cloud - about the "chronic inflammatory disorder", I thought all ME patients had a lot of inflammation. In the summary of my report KDM says "This patient suffers from a chronic inflammatory disorder, possibly associated with a gut-immune-neurotoxic disorder." There are clear indicators of inflammation in my test results. He told me that only 20% of ME patients have this level of inflammation. Meantime, no probs with the high dose of HydroxyB12!!! I only used to take 1mg per week before and now I'm on 20mg per week!

Aquariusgirl - I am an EU citizen and I am paying for all my KDM treatment myself I think it's something like you have to exhaust local remedies first....ie no local doctor is going to refer me to KDM and say that I cannot be treated locally!!

 

[Cloud]

Rrrr - yes thanks for that. Emailed KDM's clinic and I got a response a couple of hours later (he's in Australia!). He's told me to add a second probiotic. I thought the Mutaflor would be enough but clearly it's not. My stomach's been terrible for two days but now is ever so slightly better. At least I have a vague appetite.

Cloud - about the "chronic inflammatory disorder", I thought all ME patients had a lot of inflammation. In the summary of my report KDM says "This patient suffers from a chronic inflammatory disorder, possibly associated with a gut-immune-neurotoxic disorder." There are clear indicators of inflammation in my test results. He told me that only 20% of ME patients have this level of inflammation. Meantime, no probs with the high dose of HydroxyB12!!! I only used to take 1mg per week before and now I'm on 20mg per week!

Aquariusgirl - I am an EU citizen and I am paying for all my KDM treatment myself I think it's something like you have to exhaust local remedies first....ie no local doctor is going to refer me to KDM and say that I cannot be treated locally!!

Yes, I thought all of us had an inflammatory disease as well. But, I'm just curious if KDM knows something new on this. And it sounds as though he does....so, thanks for sharing.

The inflammation that I have always dealt with obvioulsy begins in the GI system and then moves to the CNS. Sure some is chronic and very difficult to tell what's what, but I have seen this pattern long enough to have a good idea this is happening.

 

[Sushi]

hi folks
Am I right in thinking all costs are out of pocket?
If you are an EU citizen, can you use your E1 .. I think it is called...to defray any of the costs. say, like the stomach biopsy?

Also I'm curious how any of you got your docs to transfuse you with an experimental blood product.
I just can't see many US docs doing that. Their licences and all that.

Thanks.

Hi Aquariusgirl,

Costs are out of pocket but I am going to request one US lab he is using to bill Medicare. The European labs (I've been told) will usually let you pay your bill month by month. If you get a stomach biopsy, you can get it done in your own country and file it with insurance...but you have to send the tissue sample frozen in dry ice to RedLabs.

As far as US docs giving GcMAF IV, my previous doctor, (I've moved across the country so can't see her any more. She is an internist and a lawyer!) said she would give it to me if I brought it into her office...but she couldn't order it for me. So, I'm sure she knows her law on this issue.

Sushi

 

[Sushi]

Yes, I thought all of us had an inflammatory disease as well. But, I'm just curious if KDM knows something new on this. And it sounds as though he does....so, thanks for sharing.

I had proinflammatory markers checked before seeing KDM and only one was high. I'd guess it could be from LDN and high doses of curcumin. KDM said that if you took at least a gram and a half of curcumin a day, it should help with inflammation.

And, I am wondering if FilFla4 and Nabo if you both have an inflammatory disorder. KDM didn't say anything to me about feeling worse before better, but also said I wasn't showing high inflammation. Maybe there is a relationship with feeling worse? I've only taken 3 injections, so I don't know yet what is down the road.

Nabo, hope you do feel better soon, and if you do suspect inflammation as one of the things making you feel worse, check in with KDM--he seems to respond quickly to clinical questions.

Sushi

 

[Tony]

From what I know it's not uncommon to feel worse before feeling better on KDM's antibiotic regime. He mentioned this to me at the start. I felt worse for a few months then came out of it with a much better gut and now feel significantly less 'sickly'. Worked for me!

Excellent thread! Thanks for all the great info from our GcMAF pioneers...

 

[alexk201]

Hi Nabo,

but the heavy antibiotics which are part of my KDM treatment - my bowels are very very irritated!! (I'll spare you all the details!)

Hey Filfla, can you please tell me what KDM prescribes antibiotics for?

 

[Tony]

Hi Alex, here's some info re KDM's treatments in '07.
KDM uses antibiotics for treating mycoplasma, intestinal bacteria, Chlam pneumonia and maybe other things I don't know of. Apparently azithromycin may have some anti-viral effect.