XMRV & Osteoporosis & bone marrow & white cells

FernRhizome

Senior Member
Messages
412
Likes
2
Hi Folks:
I am wondering the following: if XMRV is in white blood cells that are found in bone marrow could that impact bone density? I have lost 50% of my spine bone density which is quite severe. I know some folks with CFS don't show any particular bone density or osteoporotic loss and yet there are some of us with extreme bone density loss. In my case of up to 10%/year.

Curious why that might be different in some of us and if XMRV might be implicated. I'll be getting XMRV testing in a few months and will post if I am positive or not. But I'd love to know if other XMRV positive folks have severe bone density loss.

And if it is due to the XMRV, if that could suggest any new treatment directions.

Of course having exercise and orthostatic intolerance and a paralyzed gut, hallmarks of CFIDS, also impact bone density.

I have bone & marrow biopsy tissue available in the deep freeze but can't, so far, find an XMRV researcher interested in looking at them. ~FernRhizome
 
Messages
495
Likes
2
Location
Sheffield UK
Hi

Had a heel bone ultrasound done today as part of my involvement in Biobank research in UK. The results say borderline; 45 db/MHz. Whatever that means? Don't know if it is significant. Don't have any family history or anything. In Old England we're not that clued up. At least, I'm not!
 

FernRhizome

Senior Member
Messages
412
Likes
2
Hi Adam:
I can't interpret someone else's lab results but I'd guess that borderline means you might show some slight bone loss.....on the edge of osteopoenia. Which is not a big deal. But as osteopoenia gets worse than it becomes osteoporosis and then that can continue on to be severe...it's a matter of what percent of bone density you lost with 100% bone being the perfect healthy adult amount (though some folks are less than that all there lives) but then as folks age they can lose more and more percent. In my case I've lost 50% for extremely severe bone density loss/osteoporosis.

One thing that is interesting is that if a disease is involved it can show more bone loss activity in the spine than in the hips. ~FernRhizome
 
D

DysautonomiaXMRV

Guest
Hiya, sorry to hear your'e bones are not too good.

If it's relevent I don't know but for my age (and being a man) I have quite bad Osteoporosis of the Spine and Hips.
I'm also XMRV+.

There any other factors that usually explain this such as lack of sunlight (if house bound) and lack of activity (exercise strengthens bones)
and ofcourse, diet.

I was told by a doctor, they think I had this problem around age 19, which is far too young in anyone, never mind a male.

For reference, my mother has CFS and also has the same problem.
 

FernRhizome

Senior Member
Messages
412
Likes
2
Hi DysautonomiaXMRV!

Thanks so much for posting. This is VERY interesting! I am 51 years old, female, with bone density t-scores of -5 in my spine. Do you happen to know your and your mom's age and bone density t-scores? I think my bone specialist will be quite interested in this possible XMRV/bone density connection. I should have XMRV results in about a month or so.

I wonder what other symptoms we have in common? I have documented dysuatuonomia, mitochondrial cytopathy, and a paralyzed gut.

I can't tolerate vitamin D orally so I am now trying 4 minute tans each week with UV lights for the winter.

I am particularly interested that you are from the U.K. as while I am from the U.S. I was in Europe when I fell suddenly severely ill and my U.S. CFIDS doctors think my case resembles the U.K. (M.E.) version more than the U.S. CFIDS version.
 

FernRhizome

Senior Member
Messages
412
Likes
2
Dear Dysautonomia XMRV:
Do you happen to know your and your mom's age and bone density t-scores? I think my bone specialist will be quite interested in this possible XMRV/bone density connection. I should have XMRV results in about a month or so. I have t-scores of -5 in my spine at age 51. ~FernRhizome
 

leaves

Senior Member
Messages
1,193
Likes
28
Hi I also have borderline spinal osteoporosis and xmrv + mibbe we should put that in our questionnaire too?
 

FernRhizome

Senior Member
Messages
412
Likes
2
That would be great if it can go on a questionnaire!!! Which questionnaire. Is it on one of the threads? ~FernRhizome
 

leaves

Senior Member
Messages
1,193
Likes
28
Yeah!! see the thread on the xmrv treatment section on symptoms, Advocate and Kim did a great job there!! I included the osteoporosis symptom in one of my posts, so hopefully we will find out whether its a common thing. Our sedentary lifestyle and hormone imbalances may be the cause of this?
 

FernRhizome

Senior Member
Messages
412
Likes
2
Great survey! I just took it.....I think we'll want to ask for osteoporosis t-scores. I'll go make that suggestion! Thanks for letting me know leaves!
 

ukxmrv

Senior Member
Messages
4,406
Likes
4,566
Location
London
My family has a history of Osteoporosis. Even my Mother who was able to ride a bicycle into her 60's was hit by it suddenly. Sadly for us the exercise and other medical care makes no difference.
 
K

Knackered

Guest
Tesco have a Calcium + Vitamin D pill for sale, it's only 2 or so for a month's supply. Could help with bone density and Vitamin D issues.
 

Sushi

Moderation Resource Albuquerque
Messages
17,067
Likes
26,478
Location
Albuquerque
I posted some of this on the survey thread but I know few of us can follow multiple threads, so I'll mention it here too.


I test borderline for osteopenia/osteoporosis
I test postive for XMRV using Direct Resonance Testing.
There is a known association between Ehlers-Danlos syndrome type 3 (hypermobility syndrome) and bone loss.
A goodly % of those with dysautonomia also have hypermobility syndrome--though most don't know it!
My doctor also found high levels of aluminum in me and said that he has found aluminum toxicity to be a marker for bone loss and it would be very difficult to regain bone without getting rid of the aluminum. He is working with me on that.

Sorry for the bullet point style!

Sushi
 
Messages
495
Likes
2
Location
Sheffield UK
Hi Fern

Thanks for the background info. I will mention the result when I go see my Consultant 1st April. No joke. Very sorry to hear of your bone deficiency. Thans again

Adam
 

ukxmrv

Senior Member
Messages
4,406
Likes
4,566
Location
London
Sadly, vit D and calcium aren't helping with my family (it's been well reported and investigated with them). Hoping for some more ideas with XMRV.
 
Messages
857
Likes
14
Location
East Coast
Sadly, vit D and calcium aren't helping with my family (it's been well reported and investigated with them). Hoping for some more ideas with XMRV.
ukxmrv....

Are you talking about the osteoporosis? Are they taking magnesium along with the calcium and vitamin D? It can be difficult to absorbe calcium if magnesium is not given with it.

Take care,

Maxine
 

ukxmrv

Senior Member
Messages
4,406
Likes
4,566
Location
London
Hi Maxine,

It's kind of you to ask. Yes this is a serious family problem affecting many people and causing a high level of disability. They are doing all the obvious things and have been for a very long time. Hopefully one day a doctor with an interest in genetics will take a look at them.

Osteoporsis then early deaths by cancer
 
Messages
857
Likes
14
Location
East Coast
ukxmrv/osteoporosis

Hi ukxmrv,

Sorry about the family problem. Unfortunately, many docs don't understand that they have to take the magnesium along with with calcium. It is not obvious to them. As many as discovering, osteoporosis turns out to be harder than here, just take this calcium.:(

Good Luck,

Maxine