Xenotropic murine leukemia virus-related virus: current research, disease association

George

waitin' fer rabbits
Messages
853
Likes
80
Location
South Texas
She did say exactly that in one of her early talks. That statement caused a lot of confusion at the time. However, I think it was more or less a non-statement statement, at least in retrospect. They did have to go back and dip into the blood more than once and the blood samples sent where taken at different times but in the long run it really wasn't about that. The problem was that they were just learning what they were doing. Kinda like trying to unlock a stuck door by standing on your right leg, pushing with your left shoulder and sticking out your tongue. You might think in the beginning that you have to do that every time. But then you notice that you can still unlock it without the tongue sticking out or standing on your right leg you just gotta get the shoulder into it. (grins)

At this point, I think it's about letting other researchers know "don't be lazy" this momma dog is hard to find!
 

V99

Senior Member
Messages
1,471
Likes
5
Location
UK
Well, I would only have one leg touching the floor, you would have 3, what an advantage.:D
 

Alesh

Senior Member
Messages
190
Likes
24
Location
Czech Republic, EU
Hi jimbob,

do you mean 24/7 pressure headaches all the time in the same place in the brain? I feel pain or pressure constantly 24/7 for about 12 years in the same place as depicted. All the rest of my head and body "feels healthy" for about 7 years now.

Also sorry to get off subject.
 

Attachments

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
Yes alesh, same as picture, both sides and also behind my eyes. Started about 3 yrs after m.e. onset and it's still driving me up a wall 23 yrs later!!!! Trying to sleep or relax is almost impossible with it pounding.
 

V99

Senior Member
Messages
1,471
Likes
5
Location
UK
I got the eye one in particular, and other places on my head. They have diminished, but it took years, and I don't have any magic advice. All I did was rest as much as possible. Sometimes it's like a knitting needle being jammed through my eye. It's totally draining.
 

Alesh

Senior Member
Messages
190
Likes
24
Location
Czech Republic, EU
Jimbob, did you have any brain angiographic examination? I will have a brain MRA examination this month. If they don't find anything I would be quite desperate. It is possible to have the more precise computed angiography with a contrast substance or something like it but according to my neurologist it would involve an invasive procedure and "You are not a case of medical emergency and I am not going to risk that you will sue the hospital if it goes wrong" so he can't order it. How stupid! :worried:
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
Can't remember having an MRI in the past, I'm claustraphobic now (probably butchered that word?), so won't be having one any time soon. I assume this pounding inflammation is due to low blood flow and I guess there is not a whole lot that can be done sadly. Keep me posted on what you find out, Thanks Jim
 

pamb

Senior Member
Messages
168
Likes
22
Location
Edmonton, AB, Canada
Jimbob and Alesh,

My husband had the 24/7 pressure headache for about 7 years, 6 of that pretty bad. The docs spent a lot of time chasing CSF leak - to no avail of course. And sadly, botched the only sample of CSF fluid so never tested to see what was in it.

This will sound very strange, but it is true: his headache went away after a reiki type healer did some work on him. It's been 2.5 years since and John just never complains of the headache anymore. He used to say it was like a cement helmet on his head and sometimes it was so bad he would bang his head against the wall screaming. Needless to say we're very grateful that bit is gone. All the rest remains.
 

*GG*

senior member
Messages
6,373
Likes
5,073
Location
Concord, NH
Jimbob, did you have any brain angiographic examination? I will have a brain MRA examination this month. If they don't find anything I would be quite desperate. It is possible to have the more precise computed angiography with a contrast substance or something like it but according to my neurologist it would involve an invasive procedure and "You are not a case of medical emergency and I am not going to risk that you will sue the hospital if it goes wrong" so he can't order it. How stupid! :worried:
Do you mean brain MRI examination?
 

Daffodil

Senior Member
Messages
5,825
Likes
6,267
my head has throbbing pressure 24/7. all MRI's have been normal, except for a recent one which showed 1 bright spot. the entire head feels inflammed. the ARV's helped a little but its mostly still there, accompanied by a lot of fog.

i find the whole thing confusing. wouldnt 4 months of 3 antiretrovirals have stopped XMRV replication? if resting XMRV in the cells is causing the inflammation, does that mean it is not latent in the cell's DNA? or is it latent and pumping out injurious proteins? and which proteins? it has no accessory proteins?!

can anyone help clear this theory up for me?

sue
xoxo
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
When the Ral was making me feel better, it didn't help with the 24/7 pressure headaches, which was one of the symptons I needed help with. I would trade the increase in stamina, less brain fog and better mood in a heartbeat to get rid of these headaches, that's how freakin annoying they are!!! If anyone out there has found anything that helps, please let me, alesh, sue and whoever else know.
 

being

Senior Member
Messages
14
Likes
0
Someone mentioned it a while back on another list, but avoiding soybeans decreases my headaches a bunch. Soybean oil is in a lot of stuff and avoiding it also helps a ton with my joint aches. Same thing with soy lethicin. Partially hydrogenated vegetable oil gives me brainfog on steroids and also headaches- that pressure-type headache right at that point as shown on those pics someone posted earlier. I'm still really disabled, but avoiding certain foods helps a ton with specific symptoms. Nightshade foods such as potato, tomato, bell pepper and eggplant make my joints ache and give me a very extreme fatigue. Blueberries, blackberries and artichokes also contain solanine, the active ingredient in nightshade foods, so those do the same.

MERUK has done research on abnormal acetylcholine response or something like that in CFS patients and solanine in an acetylcholinerase breakdown inhibitor, so it seems likely that that has something to do with it, at least on the nightshade front. Don't know what the deal is with soybean stuff.
 

Alesh

Senior Member
Messages
190
Likes
24
Location
Czech Republic, EU
MRA stands for magnetic resonance angiography. I don't know what is the current spatial resolution of these imaging methods but I hope it will reveal some treatable cerebral vasculopathy. I felt the "inflammation of the whole brain" for the first four years and headaches in various part of the brain but mainly on the left side. Then I was greatly helped by low doses, 5-10 mg, of citalopram: The "inflammation of the whole brain" disappeared but the feeling of inflammation, tinnitus and headache stayed just in the one place on the left side. For me the pain isn't the main problem, the main problem is cognitive deficit, exhaustion and ataxia. It is possible that XMRV causes cerebral vasculopathy and current ARV have little effect on it. I have tried four vasodilators: nimodipine, cinnarizine, tadalafil and clenbuterol. Now it seems to me that chronic treatment with a low dose of clenbuterol, 5-10mcg, is of benefit. Topiramate is said to alleviate the cluster headaches in some cases. I haven't find any connection between what I eat and how I feel so far. Only short time fasting seems to improve my condition. I don't believe in the power of reiki it probably was a coincidence.
 

Alesh

Senior Member
Messages
190
Likes
24
Location
Czech Republic, EU
my head has throbbing pressure 24/7. all MRI's have been normal, except for a recent one which showed 1 bright spot. the entire head feels inflammed. the ARV's helped a little but its mostly still there, accompanied by a lot of fog.

i find the whole thing confusing. wouldnt 4 months of 3 antiretrovirals have stopped XMRV replication? if resting XMRV in the cells is causing the inflammation, does that mean it is not latent in the cell's DNA? or is it latent and pumping out injurious proteins? and which proteins? it has no accessory proteins?!

can anyone help clear this theory up for me?

sue
xoxo
If the pressure is throbbing it seems to me that it must have a connection with blood vessels in the brain.
 

Stone

Senior Member
Messages
371
Likes
12
Location
NC
I haven't read this entire thread so if this has been said before, please disregard. About the side effects like the headaches, has anyone consulted any HIV message boards or sources? Maybe there is some kind help there about dealing with these medication induced headaches? After all, our HIV/AIDS friends have been at this a lot longer than we, and this isn't new territory to them. Just an idea. Please forgive and disregard if it's been posted before or if I have no idea what I'm talking about. Only trying to help. Meanwhile, sending positive love and energy and prayers or whatever you want to call it your way, hoping for a speedy recovery. :hug: