elaine smiles
09-04-2003, 11:25 PM
Wow, that's some story John. I can't offer any specific help except for a
piece of advice my Oral surgeon gave me a while ago and it really hit home
with me. He suggested that if he or any member of his family had a serious
problem that did not seem to be resolving itself locally he would certainly
leave the country ( via Internet initially ) and remove himself from the
local dogma. He said that in his circles everyone tends to converge to a
"Group think" mind set. The same doctors go the same symposiums where by
they form a tight little circle and tend not to want new discoveries unless
it is by one of their own. He suggested to try a completely different
circle of knowledge and not focus in the USA or Canada at all. Go to
Sweden, Germany or France to reach new knowledge and discoveries.
Sorry , it was not what you were looking for but I found it quite profound.
I have not discovered that much abroad just yet. If I do I will let you
know. I'm only -3.2 and 45 years old. male.
"John" <n2rdv@optonline.net> wrote in message
news:3F56557D.8118011E@optonline.net...
> Dear All,
>
>
> I've been around this board as a user back when Jerry
> founded it and later as the moderator. I am now in the
> position where I desperately need help and any idea i can
> get is worth looking at.
>
> I am a 51 yr old white male with osteoporosis to the tune
> of - 4.2. It was diagnosed back in 1998 or maybe 1997 but
> whatever it has not responded to treatment. It was caused by
> a combination of steroid injections ( nerve blocks ) and the
> steroids used during my back operations. In any case i am
> stuck. I've been on Fosamax since even before it was
> released as a test patient. THe docs added Miacalcin for a
> few years and then stopped that . Additional Calcium (
> Citrical and Citrical D ) is a daily regimen along with what
> exercise i can perform. I have also been injecting
> Testosterone Cypionate for most of these years due to a low
> count. All seemed fine until a few months ago when my blood
> counts went wacky.
>
> testosterone dropped to near zero - while PTH doubled normal
> maximum value. Thyroid tests - ultrasound, Cat scan - and
> finally an actual biopsy have come back negative and all
> other blood values are near or at normal. What's worse is
> that something in my body is eliminating testosterone real
> quick - where i used to get reading of ( before and 1 day
> after injection ) of 350 and 800. I now get 30 and 75. The
> docs swore i was not injecting it and then after they tried,
> we got new vials and then even tried another form of
> injectable testosterone yet the same results keep coming up.
> The last doc injected a full 3cc ( 100mg/per cc) which
> should have driven my levels to the 2000 level barely and
> touched 100. We all figured the test lab went crazy so we
> tried a 2nd and then a 3rd - all seperate test facilities
> and the results are all within reason of each other. This
> nightmare is real.
>
> My last DXA scan shows a 4% net loss from two years ago
> despite all of the above.
>
> My doc was one of those using Forteo on test patients and is
> not in favor of this drug - even worse now that my own PTH
> has gone wacky, it is not even a viable option.
>
> I have just today contacted a research group only to be told
> that it was all women and they knew of ZERO test groups that
> included men.
>
> I had been to the super duper Columbia Presbyterian Medical
> Center ( New York City ) and in particular it's Metabolic
> Bone unit back in 1998 when they basically said there was no
> hope and wrote me off. Ditto for the famed Kessler rehab
> center/hospital of Superman fame. At that stage local
> specialists started on me and i kept up hope. THat hope was
> dashed badly these past few weeks and i am wondering --
>
> HAs anyone read or heard of anything new or not in the
> mainstream lately? I read a lot but hopefully there is
> something that my docs and i am missing. If you have any
> idea then post it or send it to me and i will be grateful
> for it and your effort even if it may seem that i should
> know if it already.
>
> Thanks In Advance
> John
>
> NJ USA
piece of advice my Oral surgeon gave me a while ago and it really hit home
with me. He suggested that if he or any member of his family had a serious
problem that did not seem to be resolving itself locally he would certainly
leave the country ( via Internet initially ) and remove himself from the
local dogma. He said that in his circles everyone tends to converge to a
"Group think" mind set. The same doctors go the same symposiums where by
they form a tight little circle and tend not to want new discoveries unless
it is by one of their own. He suggested to try a completely different
circle of knowledge and not focus in the USA or Canada at all. Go to
Sweden, Germany or France to reach new knowledge and discoveries.
Sorry , it was not what you were looking for but I found it quite profound.
I have not discovered that much abroad just yet. If I do I will let you
know. I'm only -3.2 and 45 years old. male.
"John" <n2rdv@optonline.net> wrote in message
news:3F56557D.8118011E@optonline.net...
> Dear All,
>
>
> I've been around this board as a user back when Jerry
> founded it and later as the moderator. I am now in the
> position where I desperately need help and any idea i can
> get is worth looking at.
>
> I am a 51 yr old white male with osteoporosis to the tune
> of - 4.2. It was diagnosed back in 1998 or maybe 1997 but
> whatever it has not responded to treatment. It was caused by
> a combination of steroid injections ( nerve blocks ) and the
> steroids used during my back operations. In any case i am
> stuck. I've been on Fosamax since even before it was
> released as a test patient. THe docs added Miacalcin for a
> few years and then stopped that . Additional Calcium (
> Citrical and Citrical D ) is a daily regimen along with what
> exercise i can perform. I have also been injecting
> Testosterone Cypionate for most of these years due to a low
> count. All seemed fine until a few months ago when my blood
> counts went wacky.
>
> testosterone dropped to near zero - while PTH doubled normal
> maximum value. Thyroid tests - ultrasound, Cat scan - and
> finally an actual biopsy have come back negative and all
> other blood values are near or at normal. What's worse is
> that something in my body is eliminating testosterone real
> quick - where i used to get reading of ( before and 1 day
> after injection ) of 350 and 800. I now get 30 and 75. The
> docs swore i was not injecting it and then after they tried,
> we got new vials and then even tried another form of
> injectable testosterone yet the same results keep coming up.
> The last doc injected a full 3cc ( 100mg/per cc) which
> should have driven my levels to the 2000 level barely and
> touched 100. We all figured the test lab went crazy so we
> tried a 2nd and then a 3rd - all seperate test facilities
> and the results are all within reason of each other. This
> nightmare is real.
>
> My last DXA scan shows a 4% net loss from two years ago
> despite all of the above.
>
> My doc was one of those using Forteo on test patients and is
> not in favor of this drug - even worse now that my own PTH
> has gone wacky, it is not even a viable option.
>
> I have just today contacted a research group only to be told
> that it was all women and they knew of ZERO test groups that
> included men.
>
> I had been to the super duper Columbia Presbyterian Medical
> Center ( New York City ) and in particular it's Metabolic
> Bone unit back in 1998 when they basically said there was no
> hope and wrote me off. Ditto for the famed Kessler rehab
> center/hospital of Superman fame. At that stage local
> specialists started on me and i kept up hope. THat hope was
> dashed badly these past few weeks and i am wondering --
>
> HAs anyone read or heard of anything new or not in the
> mainstream lately? I read a lot but hopefully there is
> something that my docs and i am missing. If you have any
> idea then post it or send it to me and i will be grateful
> for it and your effort even if it may seem that i should
> know if it already.
>
> Thanks In Advance
> John
>
> NJ USA