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

[Shoesies]

Daffodil....I needed the encouraging words. Thanks. I am watching everywhere for the news.

 

[Xandoff]

Xandoff, so your doc does not think acyclovir a viable treatment for CEBV? I mean freak am I still wasting my damn time here?

My Doc cited some studies showing that 500 mg of Famcyclovir four times a day is good for people, esp those with pain ( I Think?) . I was on Valcyte for 13 months, very expensive and the Montoya studies on Valcyte aren't all out yet. I feel better on Famcyclovir and it is much cheaper. If you check my personal profile page yu will see all the viruses I have, half my immune system is basically dormant.

Shoesies....this is a marathon, not a sprint. We are all so different. I totally agree with you about local non ME CFS Docs are so frustrating to deal with. They think we are nuts and want nothing to do with us. It hurts, but it is the truth. I had an excellent local GP but ME CFS burned up our relationship as I was getting sicker and all my tests were normal. My free Irish advice to a NEWBIE is to learn to live in your own "envelope" of energy. When ever we exceed our energy envelope we crash hard. It is very hard to accept that I have this un-recognized and demonized affliction from hell, but there it is. I have had for almost 10 years now. It takes time to find the right Doctor and to be patient. I know. I send you Light and Love Shoesies.

 

[Shoesies]

My Doc cited some studies showing that 500 mg of Famcyclovir four times a day is good for people, esp those with pain ( I Think?) . I was on Valcyte for 13 months, very expensive and the Montoya studies on Valcyte aren't all out yet. I feel better on Famcyclovir and it is much cheaper. If you check my personal profile page yu will see all the viruses I have, half my immune system is basically dormant.

Shoesies....this is a marathon, not a sprint. We are all so different. I totally agree with you about local non ME CFS Docs are so frustrating to deal with. They think we are nuts and want nothing to do with us. It hurts, but it is the truth. I had an excellent local GP but ME CFS burned up our relationship as I was getting sicker and all my tests were normal. My free Irish advice to a NEWBIE is to learn to live in your own "envelope" of energy. When ever we exceed our energy envelope we crash hard. It is very hard to accept that I have this un-recognized and demonized affliction from hell, but there it is. I have had for almost 10 years now. It takes time to find the right Doctor and to be patient. I know. I send you Light and Love Shoesies.

Well, Xandoff....doing my best to heed all advice from those with more experience. Right now I am scared as hell to even take the dogs out for a walk because I am afraid to get worse. I suppose finding the boundaries of my energy envelope will take time...I just pray it does not take error. Not so sure how many more of those this old girl can handle! Oh I agree this is a B word from hell and I would like to kick it's a** all the way back there. Your situation with your GP sounds so familiar...and it makes me sad...my GP has been a good friend. Now I guess he thinks I am a nutter. He used to sit front row at some of my concerts. Sigh..

 

[Daffodil]

concerts? you make music?

 

[Shoesies]

concerts? you make music?

SInce I was young. Vocalist, Studio Work, Recording Artist and Worship Leader. I miss it like air is lost to my lungs.

 

[Daffodil]

update: continue to feel awful. terrible nausea that wakes me up in the middle of the night and reappears whenever i lay down for a while. brain fog severe. am continuing with gcmaf. will begin xifaxan soon.

gcmaf had me better for a while...not sure what happened. famvir was a bad idea and definite stomach issues are surfacing now, too. inflammation getting worse.

 

[Shoesies]

Oh Daff....I am so sorry you having such a time of it. All of you here have been so selfless in helping me and others...I will think of you and lift you up - just a simple prayer for a better day. Cursed illness.

 

[Xandoff]

Oh Daff....I am so sorry you having such a time of it. All of you here have been so selfless in helping me and others...I will think of you and lift you up - just a simple prayer for a better day. Cursed illness.

I have spent almost ten years trying to accept this disease. It was only in 2010 that I saw a real ME CFS Doctor and had my immune panel run that showed how sick I really was. By that time ME & CFS had burned out my relationship with my local GP. I then switched pain medications and "FLUNKED" a drug test because my body took so long to release the old medication. I was fired as a patient. I was given three months to find a new pain Doctor and now I had a Giant Red Flag Painted on me. They thought that I was using street drugs! I had an immune panel a month later and I had a lot of nasty viruses. EBV & CMV and all the nasties. I have been off pain meds for a year and my life is helll. It is like my spinal fluid is noxious, my entire spine hurts. Just my "story". We all experience so much prejudice from Doctors who are supposed to help us but don't know how. We are considered crazy when ME CFS comes up. ME CFS = CRAZY. I will go back to trying to accecpt this disease. It is very hard. It is very lonely. Just sayin...................​

 

[Xandoff]

Daffodil....I needed the encouraging words. Thanks. I am watching everywhere for the news.

Shoesies, I don't know if these are encouraging words. These are my test results I received back in Oct 2010 from a real ME CFS Doctor after being fired by my local GP. I had been sick with ME CFS since 2003-2005 (un-known). I had needless neck surgery. The neck surgery in 2005 launched my ME CFS into orbit.

I tested positive for HHV-6 ( 3.45), Chlamydia Pneumoniae AB IGM (>1:256), Cytomegalovirus AB IGG CMV IgG (3.1), anemia (on going) High C-Reactive Protein, Vitamin D defiency (29), (in spite of taking 3,000 I.U. a day!) Low DHEA Sulfate (15.0), Mycoplasma Pneumoniae IGG AB (104) Low Testosterone (258) on going, and it was suggestive of a past Epstein Barr Virus infection.​

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" You can never solve a problem from the level on which it was created". ALBERT EINSTEIN​

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Encouraging Words: You are not alone .....we are all in this together. You have friends here.​

 

[Shoesies]

I have spent almost ten years trying to accept this disease. It was only in 2010 that I saw a real ME CFS Doctor and had my immune panel run that showed how sick I really was. By that time ME & CFS had burned out my relationship with my local GP. I then switched pain medications and "FLUNKED" a drug test because my body took so long to release the old medication. I was fired as a patient. I was given three months to find a new pain Doctor and now I had a Giant Red Flag Painted on me. They thought that I was using street drugs! I had an immune panel a month later and I had a lot of nasty viruses. EBV & CMV and all the nasties. I have been off pain meds for a year and my life is helll. It is like my spinal fluid is noxious, my entire spine hurts. Just my "story". We all experience so much prejudice from Doctors who are supposed to help us but don't know how. We are considered crazy when ME CFS comes up. ME CFS = CRAZY. I will go back to trying to accecpt this disease. It is very hard. It is very lonely. Just sayin...................​

Oh Xandoff - my temerament and personality is such that just to accept this disease is so difficult. I have accepted my body needs rest and I can no longer push through and serve my loved ones and self in the same manner I once did. I get the GP thinks you are crazy crap, this was my good friend of 14 years and he just suggested I needed a boost from wellbutrin. A freaking boost? This after test result after test result for almost three years of elevated EBV titres and elevated liver panels and spleen involvement. Yeah, a boost...that'l freaking do it. Personally, I think it is willfull ignorance..it is just too difficult for them to educate themselves and help.

 

[Xandoff]

Medical Burnout, I can relate to that. I too have a hard time limiting myself, the illness forces me to do so. One thing I have found is that most of us ME CFS ers are type A personalities. We are the doers, now we can't do and live the exciting vibrant lives we once led. It is humbling. I had to change and I still fight my basic programming of being a doer. Stigma, shame, fear.... these are the places our illness can take us. They are not the best places to be in. I am a very spiritual person and the Light has alway's been there for me but this illness is unlike any other. Keep your light alive Shoesies! This illness has not changed the basic goodness and light in you. You are the same spiritually. Physically on the other hand we are very ill and need to mind our ways. Get with a real ME CFS Doctor and set your spiritual journey. You sound very much like me when I got ill and did not know what I was dealing with. Stay away from Doctors who think Wellbutrin will make you WELL.Find a Doctor who respects this illness and do your best. Stay in the Light Shoesies!

 

[Shoesies]

I bask in the Light Xandoff. However, I get very angry when legitimate illness is willfully ignored or pushed aside as a psych issue. Really hacks me off and my flesh rises. I am trying to harness the anger and use it productively and not allow it to hamper my progress. Trying, not there yet.

 

[Xandoff]

I bask in the Light Xandoff. However, I get very angry when legitimate illness is willfully ignored or pushed aside as a psych issue. Really hacks me off and my flesh rises. I am trying to harness the anger and use it productively and not allow it to hamper my progress. Trying, not there yet.

(Not there yet) Neither am I! I can guarantee you that the medical system found me very trying. In fact they painted a scarlet letter on my medical file saying this person is a depressed hypochondriac. I guess I have been called worse. I held fastly to the American illusion that Doctor's really care, and they do, just not if you have a diagnosis like ME CFS or F-I-B-R-O-M-Y-A-L-G-I-A. It's a bloody shame. The Medical establishment in America spurning very ill people is a travesty. It will not change untill there is a real game-changer-until then.....find Doctors who treat ME CFS and avoid your Local GP. I would say to you...Let Go and move on.....but I have been trying fto or almost ten years myself. It ain't easy. I think GcMAF is a great option. All my Best to you Shoesies.

 

[suzanne]

Can anyone help? Most know I am struggling with getting my inflammation under control so that I can re start GcMAF.

Tonight I took my first experimental dose of Anatabloc. I took only 1/4 of a tablet ( instead of 1 recommended).

I had a good period for the first 30 minutes and then MASSIVE headache. I have some nausea, dry mouth and a flare up of my itchy skin. I am really uncertain about what to do , so I will stop the supplement for now.

There are not a lot of reports about side effects. I have read that headache and gastro side effects are possible and they normally tell you to titrate up from a smaller dose- BUT I am already on a smaller dose. The issue is why is this happening and what do I do next?

I have contacted Anatabloc 'live' and they keep telling me to phone their medical toll line. Trouble is that is not really possible for me from Aus.

I have emailed them again and asked that my issue be put to the medical team and requested that the dialogue conitnue via email.

Any thoughts on this. Could it be that I a really sensitive to the brain chemical changes? At first I blames the vit D that I know I find hard to take, but perhaps not as I would only have had about 8 IU of vit D in the 1/4 tablet dosage.

I am so disappointed that I have had this response and hopefully I may get some insights- somehow about whether to persist.

many thanks ( a bit distressed)

Suzanne

 

[Sushi]

Can anyone help? Most know I am struggling with getting my inflammation under control so that I can re start GcMAF.

Tonight I took my first experimental dose of Anatabloc. I took only 1/4 of a tablet ( instead of 1 recommended).

I had a good period for the first 30 minutes and then MASSIVE headache. I have some nausea, dry mouth and a flare up of my itchy skin. I am really uncertain about what to do , so I will stop the supplement for now.

There are not a lot of reports about side effects. I have read that headache and gastro side effects are possible and they normally tell you to titrate up from a smaller dose- BUT I am already on a smaller dose. The issue is why is this happening and what do I do next?

I have contacted Anatabloc 'live' and they keep telling me to phone their medical toll line. Trouble is that is not really possible for me from Aus.

I have emailed them again and asked that my issue be put to the medical team and requested that the dialogue conitnue via email.

Any thoughts on this. Could it be that I a really sensitive to the brain chemical changes? At first I blames the vit D that I know I find hard to take, but perhaps not as I would only have had about 8 IU of vit D in the 1/4 tablet dosage.

I am so disappointed that I have had this response and hopefully I may get some insights- somehow about whether to persist.

many thanks ( a bit distressed)

Suzanne

Hi Suzanne,

Would you like me to phone them for you? If so, PM me the details to share.

Sushi

 

[Forebearance]

Can anyone help? Most know I am struggling with getting my inflammation under control so that I can re start GcMAF.

Tonight I took my first experimental dose of Anatabloc. I took only 1/4 of a tablet ( instead of 1 recommended).

I had a good period for the first 30 minutes and then MASSIVE headache. I have some nausea, dry mouth and a flare up of my itchy skin. I am really uncertain about what to do , so I will stop the supplement for now.

Suzanne

I'm really sorry to hear that, Suzanne.
At least it helps me to know that, so I will be really careful if I try it.
Fore

 

[Daffodil]

i am worried cuz i am still anemic and have been on iron supplements for months. i wonder if i will get cancer and die

 

[heapsreal]

i am worried cuz i am still anemic and have been on iron supplements for months. i wonder if i will get cancer and die

can get anemia from low iron or low b12 or low folate. I also know that if supplementing with iron that it is important to take vit c with it to help absorption too.

 

[Xandoff]

i am worried cuz i am still anemic and have been on iron supplements for months. i wonder if i will get cancer and die

Daffodil,

Back in 2003 I was first diagnosed with anemia, I have been on Iron supplemments since. I use a iron Chelate (ferrochel) which is easy to digest. I also take time release Vitamin C to help absorb the Iron. Many times it helps my sleep and calms my nerves. So here in 2013 after ten years I am still dependent on Iron. Many years from now they might figure out what causes this anemia in ME CFS. Supplement your iron. I must say for some reason I was alway's against taking Iron but it has proven to be my friend. Have a good Day Daffodil!

 

[snowathlete]

my wife (who doesnt have ME/CFS) has an iron problem. Hers is with her Iron stores that keep dropping low, so she is always on iron, has been for a couple of years. Need to look into it properly really but the NHS dont really care.