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#27243 From: "AdL" <kolaasen@...>
Date: Sat Jan 31, 2009 1:58 am
Subject: RE: Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions
andel1979
Offline Offline
Send Email Send Email
 
Dear Carole,
 
Wow! Thanks for all the great information! It does indeed sound encouraging to at least try the treatment, if it is available through my health insurance. (From what I have read on the Internet, it is quite expensive without health insurance coverage.) I see that it is on my insurance's formulary, but requires precertification.
 
I agree that I would certainly want to take it slowly, as it is not worth risking any serious complications. I do have one question regarding the conflict with diabetes. I do not have diabetes, but it HGH can exacerbate diabetes, can it also cause diabetes? I definitely do not want to head down that road. By the way, were you taking HGH or IGF?
 
Again, thanks so much for your assistance. I really appreciate your taking time to help me out. Do have a lovely weekend!
 
Very Truly Yours,
Angelique

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of frincess51
Sent: Friday, January 30, 2009 6:17 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions

Hi Angelique,
My name is Carole and I am also HGH deficient. I took HGH for quite
a few months and it did help with my Dercum's symptoms. I slept
better, had less pain, less fatigue, more stamina and was able to
lose a bit of weight. It is important to have a doctor familiar with
administering HGH therapy because there can be rather severe
complications if the dose is too high. It is best to titrate the
dose upward slowly and let your body adjust. I did have some joint
pain for a week or so, but it was bearable and my experience was
generally very positive. I am also diabetic and had to stop HGH
because I could not control my blood sugar. It is worth a try in my
view, especially if you have a good doctor for support. Hope this
helps.
Take care,
Carole

--- In Dercums_Disease@yahoogroups.com, "AdL" <kolaasen@...> wrote:
>
> Dear Joyce:
>
> Thank you so much for your reply! I am completely new to
> IGF-1...is it used to treat menopausal symptoms? I am not in
> menopause yet, but my doctor discovered I was quite low on IGF-1,
> and we have read studies that it can help with Chronic Fatigue
> Syndrome symptoms, which I have in addition to (suspected)
> Dercum's. We are still in the diagnosis stage for Dercum's, but
> my doctor and I are feeling fairly certain that I do have
> Dercum's. We thought perhaps IGF-1 would help with Dercum's
> symptoms, as well, (I hope, I hope) because Dr. Karen mentioned
> it on her recommendations page.
>
> I, too, have hypothyroidism, so I will take that into
> consideration, thanks! I will keep the Effector in mind for the
> future, too. I am so happy for you that you found something that
> works for you. :-) Have a lovely day, Joyce!
>
> Very Truly Yours,
> Angelique
>
> _____
>
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Joyce White
> Sent: Wednesday, January 28, 2009 12:19 PM
> To: dercums_disease@yahoogroups.com
> Subject: RE: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> Deficiency Questions
>
>
>
> My Dr. told me that I can't take any type of hormone replacement,
> natural, or otherwise. I had a total hysterectomy and I also have
> blood clotting Factor V Lieden.
> For my symptoms, such as getting hot flashes, warm, and emotions
> he gave me Effector saying that is one thing they find helps for
> those who can't take hormone replacement. It has worked for me.
> I also have a hypothyroidism and was told the natural hormone
> could mess up that....hope this helps.
> Joyce
>
>
> _____
>
>
> To: Dercums_Disease@yahoogroups.com
> From: kolaasen@...
> Date: Wed, 28 Jan 2009 07:58:05 +0000
> Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> Deficiency Questions
>
>
>
> Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
>
> I am new to both Dercum's and this forum (I must confess, I have
> been lurking for a couple months (keep me anyway??)), and I am
> grateful to everyone who has shared with the group, because I
> have certainly learned a lot in those two months. Thank you all!
>
> My doctor asked me to forward some questions to you, Dr. Karen,
> regarding IGF-1 deficiency. Here is my relevant background
> information, in brief (I hope!):
>
> I first became sick with CFIDS in 1987 (age 20), and was finally
> diagnosed in 1992. I discovered my first painful lipoma (right
> forearm) in 1991, which was dismissed as a benign lipoma that was
> NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase
> of CFIDS lasted until approximately 1996, at which point I was
> able to function at a more normal level, meaning I no longer
> slept 20 hours a day, and the fevers, sore throats, swollen
> glands, etc. were no longer the norm. I returned to work in 1999,
> and at the same time I indulged in an exercise binge (meaning 3
> to 4 hours, including both aerobic and weights). At the time, I
> noticed veins popping out on my arms and legs, but it was not
> until years later that I realized the veins were pushed out by
> lipomas that formed under the veins. More recently, in 2006, I
> succumbed to another exercise binge (only 2 hours a day), and
> that is when my lipomas really began to proliferate.
> Concomitantly, I began to have unexplained, and still
> uncontrolled, tachycardia and dyspnea. I have not recovered from
> the illness brought on at that time, which I now believe to be
> Dercum's.
>
> Following your testing protocols, most of my labs returned within
> the normal range except for aluminum, which was slightly elevated
> (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low
> IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63
> ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
>
> 1.
>
> How does IGF-1 deficiency interact with or affect
> Dercum's? Is it causative? Is it a resultive? Unrelated?
> 2.
>
> Do you recommend treatment of IGF-1 deficiency?
> 3.
>
> If so, under what conditions do you advocate treatment?
> How low should the IGF-1 be? Do you look for certain symptoms to
> treat?
> 4.
>
> If so, do you treat with Growth Hormone, Insulin-like
> Growth Factor, or something else?
> 5.
>
> Are there situations during which one should definitely
> NOT treat IGF-1 deficiency?
> 6.
>
> What are the risks associated with GH or IGF treatment?
> 7.
>
> Is treatment even possible? My doctor is under the
> impression that GH/IGF-1 is illegal in the U.S., but I am not
> finding confirmation of that on the Internet.
>
> To the rest of the list, please feel free to share any
> information or experiences you have with IGF-1. I appreciate all
> input. And thanks for giving me the opportunity to ask these
> questions. Have a lovely day!
>
> Very Truly Yours,
> Angelique
>
> He has made everything beautiful in its time. Ecclesiastes 3:11
> .

.

#27242 From: Joyce White <joycenlv@...>
Date: Sun Feb 1, 2009 5:48 am
Subject: RE: Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions
joycenreno2
Offline Offline
Send Email Send Email
 

Thanks Christine.....not many Dr.'s are concerned enough about Factor V Lieden or Leiden, forgot exact spelling. I think the blood test to find out if someone has it should be automatically done since it is hereitary from one or both parents.
Blessings to all.
Joyce







To: Dercums_Disease@yahoogroups.com
From: placidcharmer@...
Date: Sat, 31 Jan 2009 17:03:19 +0000
Subject: [Dercums_Disease] Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions


When I went to the bariatric clinic they gave me HGH injections once
a week around my navel. I really felt good. The only problem I
could see is that when I went off the shot I have been in the worst
flare of my life. I don't know if it was all the meds they gave me
(phentermine, oil caps, ect..)I loved the way I felt I just wasn't
losing weight to account for the cost of the treatments so I
stopped. I did lose weight though. I lost almost 15 lbs. They all
came back after I stopped taking the treatments.

Christine

--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> Hi Angelique,
> My name is Carole and I am also HGH deficient. I took HGH for
quite
> a few months and it did help with my Dercum's symptoms. I slept
> better, had less pain, less fatigue, more stamina and was able to
> lose a bit of weight. It is important to have a doctor familiar
with
> administering HGH therapy because there can be rather severe
> complications if the dose is too high. It is best to titrate the
> dose upward slowly and let your body adjust. I did have some joint
> pain for a week or so, but it was bearable and my experience was
> generally very positive. I am also diabetic and had to stop HGH
> because I could not control my blood sugar. It is worth a try in
my
> view, especially if you have a good doctor for support. Hope this
> helps.
> Take care,
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, "AdL" <kolaasen@> wrote:
> >
> > Dear Joyce:
> >
> > Thank you so much for your reply! I am completely new to
> > IGF-1...is it used to treat menopausal symptoms? I am not in
> > menopause yet, but my doctor discovered I was quite low on IGF-1,
> > and we have read studies that it can help with Chronic Fatigue
> > Syndrome symptoms, which I have in addition to (suspected)
> > Dercum's. We are still in the diagnosis stage for Dercum's, but
> > my doctor and I are feeling fairly certain that I do have
> > Dercum's. We thought perhaps IGF-1 would help with Dercum's
> > symptoms, as well, (I hope, I hope) because Dr. Karen mentioned
> > it on her recommendations page.
> >
> > I, too, have hypothyroidism, so I will take that into
> > consideration, thanks! I will keep the Effector in mind for the
> > future, too. I am so happy for you that you found something that
> > works for you. :-) Have a lovely day, Joyce!
> >
> > Very Truly Yours,
> > Angelique
> >
> > _____
> >
> > From: Dercums_Disease@yahoogroups.com
> > [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Joyce White
> > Sent: Wednesday, January 28, 2009 12:19 PM
> > To: dercums_disease@yahoogroups.com
> > Subject: RE: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> > Deficiency Questions
> >
> >
> >
> > My Dr. told me that I can't take any type of hormone replacement,
> > natural, or otherwise. I had a total hysterectomy and I also have
> > blood clotting Factor V Lieden.
> > For my symptoms, such as getting hot flashes, warm, and emotions
> > he gave me Effector saying that is one thing they find helps for
> > those who can't take hormone replacement. It has worked for me.
> > I also have a hypothyroidism and was told the natural hormone
> > could mess up that....hope this helps.
> > Joyce
> >
> >
> >
> >
> >
> >
> >
> >
> > _____
> >
> >
> > To: Dercums_Disease@yahoogroups.com
> > From: kolaasen@
> > Date: Wed, 28 Jan 2009 07:58:05 +0000
> > Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> > Deficiency Questions
> >
> >
> >
> > Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
> >
> > I am new to both Dercum's and this forum (I must confess, I have
> > been lurking for a couple months (keep me anyway??)), and I am
> > grateful to everyone who has shared with the group, because I
> > have certainly learned a lot in those two months. Thank you all!
> >
> > My doctor asked me to forward some questions to you, Dr. Karen,
> > regarding IGF-1 deficiency. Here is my relevant background
> > information, in brief (I hope!):
> >
> > I first became sick with CFIDS in 1987 (age 20), and was finally
> > diagnosed in 1992. I discovered my first painful lipoma (right
> > forearm) in 1991, which was dismissed as a benign lipoma that was
> > NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase
> > of CFIDS lasted until approximately 1996, at which point I was
> > able to function at a more normal level, meaning I no longer
> > slept 20 hours a day, and the fevers, sore throats, swollen
> > glands, etc. were no longer the norm. I returned to work in 1999,
> > and at the same time I indulged in an exercise binge (meaning 3
> > to 4 hours, including both aerobic and weights). At the time, I
> > noticed veins popping out on my arms and legs, but it was not
> > until years later that I realized the veins were pushed out by
> > lipomas that formed under the veins. More recently, in 2006, I
> > succumbed to another exercise binge (only 2 hours a day), and
> > that is when my lipomas really began to proliferate.
> > Concomitantly, I began to have unexplained, and still
> > uncontrolled, tachycardia and dyspnea. I have not recovered from
> > the illness brought on at that time, which I now believe to be
> > Dercum's.
> >
> > Following your testing protocols, most of my labs returned within
> > the normal range except for aluminum, which was slightly elevated
> > (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low
> > IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63
> > ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
> >
> > 1.
> >
> > How does IGF-1 deficiency interact with or affect
> > Dercum's? Is it causative? Is it a resultive? Unrelated?
> > 2.
> >
> > Do you recommend treatment of IGF-1 deficiency?
> > 3.
> >
> > If so, under what conditions do you advocate treatment?
> > How low should the IGF-1 be? Do you look for certain symptoms to
> > treat?
> > 4.
> >
> > If so, do you treat with Growth Hormone, Insulin-like
> > Growth Factor, or something else?
> > 5.
> >
> > Are there situations during which one should definitely
> > NOT treat IGF-1 deficiency?
> > 6.
> >
> > What are the risks associated with GH or IGF treatment?
> > 7.
> >
> > Is treatment even possible? My doctor is under the
> > impression that GH/IGF-1 is illegal in the U.S., but I am not
> > finding confirmation of that on the Internet.
> >
> > To the rest of the list, please feel free to share any
> > information or experiences you have with IGF-1. I appreciate all
> > input. And thanks for giving me the opportunity to ask these
> > questions. Have a lovely day!
> >
> > Very Truly Yours,
> > Angelique
> >
> > He has made everything beautiful in its time. Ecclesiastes 3:11
> > .
> >
> > <http://geo.yahoo.com/serv?s=97359714/grpId=1371922/grpspId=17050
> > 61589/msgId=27232/stime=1233170356/nc1=4025373/nc2=5202317/nc3=51
> > 70417>
> >
>




Windows Live™: E-mail. Chat. Share. Get more ways to connect. Check it out.

#27241 From: "placidcharmer" <placidcharmer@...>
Date: Sat Jan 31, 2009 8:44 pm
Subject: Interesting article = CNN report on pain remedies
placidcharmer
Offline Offline
Send Email Send Email
 
I came across this in my research and found the article very
interesting.

http://www.cnn.com/2007/HEALTH/06/21/pain.remedies/index.html

#27240 From: "placidcharmer" <placidcharmer@...>
Date: Sat Jan 31, 2009 5:03 pm
Subject: Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions
placidcharmer
Offline Offline
Send Email Send Email
 
When I went to the bariatric clinic they gave me HGH injections once
a week around my navel.  I really felt good.  The only problem I
could see is that when I went off the shot I have been in the worst
flare of my life.  I don't know if it was all the meds they gave me
(phentermine, oil caps, ect..)I loved the way I felt I just wasn't
losing weight to account for the cost of the treatments so I
stopped.  I did lose weight though. I lost almost 15 lbs.  They all
came back after I stopped taking the treatments.

Christine


--- In Dercums_Disease@yahoogroups.com, "frincess51" <frincess51@...>
wrote:
>
> Hi Angelique,
> My name is Carole and I am also HGH deficient.  I took HGH for
quite
> a few months and it did help with my Dercum's symptoms.  I slept
> better, had less pain, less fatigue, more stamina and was able to
> lose a bit of weight.  It is important to have a doctor familiar
with
> administering HGH therapy because there can be rather severe
> complications if the dose is too high.  It is best to titrate the
> dose upward slowly and let your body adjust.  I did have some joint
> pain for a week or so, but it was bearable and my experience was
> generally very positive.  I am also diabetic and had to stop HGH
> because I could not control my blood sugar.  It is worth a try in
my
> view, especially if you have a good doctor for support.  Hope this
> helps.
> Take care,
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, "AdL" <kolaasen@> wrote:
> >
> > Dear Joyce:
> >
> > Thank you so much for your reply! I am completely new to
> > IGF-1...is it used to treat menopausal symptoms? I am not in
> > menopause yet, but my doctor discovered I was quite low on IGF-1,
> > and we have read studies that it can help with Chronic Fatigue
> > Syndrome symptoms, which I have in addition to (suspected)
> > Dercum's. We are still in the diagnosis stage for Dercum's, but
> > my doctor and I are feeling fairly certain that I do have
> > Dercum's. We thought perhaps IGF-1 would help with Dercum's
> > symptoms, as well, (I hope, I hope) because Dr. Karen mentioned
> > it on her recommendations page.
> >
> > I, too, have hypothyroidism, so I will take that into
> > consideration, thanks! I will keep the Effector in mind for the
> > future, too. I am so happy for you that you found something that
> > works for you. :-) Have a lovely day, Joyce!
> >
> > Very Truly Yours,
> > Angelique
> >
> >   _____
> >
> > From: Dercums_Disease@yahoogroups.com
> > [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Joyce White
> > Sent: Wednesday, January 28, 2009 12:19 PM
> > To: dercums_disease@yahoogroups.com
> > Subject: RE: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> > Deficiency Questions
> >
> >
> >
> > My Dr. told me that I can't take any type of hormone replacement,
> > natural, or otherwise. I had a total hysterectomy and I also have
> > blood clotting Factor V Lieden.
> > For my symptoms, such as getting hot flashes, warm, and emotions
> > he gave me Effector saying that is one thing they find helps for
> > those who can't take hormone replacement. It has worked for me.
> > I also have a hypothyroidism and was told the natural hormone
> > could mess up that....hope this helps.
> > Joyce
> >
> >
> >
> >
> >
> >
> >
> >
> >   _____
> >
> >
> > To: Dercums_Disease@yahoogroups.com
> > From: kolaasen@
> > Date: Wed, 28 Jan 2009 07:58:05 +0000
> > Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> > Deficiency Questions
> >
> >
> >
> > Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
> >
> > I am new to both Dercum's and this forum (I must confess, I have
> > been lurking for a couple months (keep me anyway??)), and I am
> > grateful to everyone who has shared with the group, because I
> > have certainly learned a lot in those two months. Thank you all!
> >
> > My doctor asked me to forward some questions to you, Dr. Karen,
> > regarding IGF-1 deficiency. Here is my relevant background
> > information, in brief (I hope!):
> >
> > I first became sick with CFIDS in 1987 (age 20), and was finally
> > diagnosed in 1992. I discovered my first painful lipoma (right
> > forearm) in 1991, which was dismissed as a benign lipoma that was
> > NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase
> > of CFIDS lasted until approximately 1996, at which point I was
> > able to function at a more normal level, meaning I no longer
> > slept 20 hours a day, and the fevers, sore throats, swollen
> > glands, etc. were no longer the norm. I returned to work in 1999,
> > and at the same time I indulged in an exercise binge (meaning 3
> > to 4 hours, including both aerobic and weights). At the time, I
> > noticed veins popping out on my arms and legs, but it was not
> > until years later that I realized the veins were pushed out by
> > lipomas that formed under the veins. More recently, in 2006, I
> > succumbed to another exercise binge (only 2 hours a day), and
> > that is when my lipomas really began to proliferate.
> > Concomitantly, I began to have unexplained, and still
> > uncontrolled, tachycardia and dyspnea. I have not recovered from
> > the illness brought on at that time, which I now believe to be
> > Dercum's.
> >
> > Following your testing protocols, most of my labs returned within
> > the normal range except for aluminum, which was slightly elevated
> > (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low
> > IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63
> > ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
> >
> > 1.
> >
> >  How does IGF-1 deficiency interact with or affect
> > Dercum's? Is it causative? Is it a resultive? Unrelated?
> > 2.
> >
> >  Do you recommend treatment of IGF-1 deficiency?
> > 3.
> >
> >  If so, under what conditions do you advocate treatment?
> > How low should the IGF-1 be? Do you look for certain symptoms to
> > treat?
> > 4.
> >
> >  If so, do you treat with Growth Hormone, Insulin-like
> > Growth Factor, or something else?
> > 5.
> >
> >  Are there situations during which one should definitely
> > NOT treat IGF-1 deficiency?
> > 6.
> >
> >  What are the risks associated with GH or IGF treatment?
> > 7.
> >
> >  Is treatment even possible? My doctor is under the
> > impression that GH/IGF-1 is illegal in the U.S., but I am not
> > finding confirmation of that on the Internet.
> >
> > To the rest of the list, please feel free to share any
> > information or experiences you have with IGF-1. I appreciate all
> > input. And thanks for giving me the opportunity to ask these
> > questions. Have a lovely day!
> >
> > Very Truly Yours,
> > Angelique
> >
> > He has made everything beautiful in its time. Ecclesiastes 3:11
> > .
> >
> > <http://geo.yahoo.com/serv?s=97359714/grpId=1371922/grpspId=17050
> > 61589/msgId=27232/stime=1233170356/nc1=4025373/nc2=5202317/nc3=51
> > 70417>
> >
>

#27239 From: "frincess51" <frincess51@...>
Date: Sat Jan 31, 2009 1:17 am
Subject: Angelique Re: For Dr. Karen Herbst — IGF-1 Deficiency Questions
frincess51
Offline Offline
Send Email Send Email
 
Hi Angelique,
My name is Carole and I am also HGH deficient.  I took HGH for quite
a few months and it did help with my Dercum's symptoms.  I slept
better, had less pain, less fatigue, more stamina and was able to
lose a bit of weight.  It is important to have a doctor familiar with
administering HGH therapy because there can be rather severe
complications if the dose is too high.  It is best to titrate the
dose upward slowly and let your body adjust.  I did have some joint
pain for a week or so, but it was bearable and my experience was
generally very positive.  I am also diabetic and had to stop HGH
because I could not control my blood sugar.  It is worth a try in my
view, especially if you have a good doctor for support.  Hope this
helps.
Take care,
Carole

--- In Dercums_Disease@yahoogroups.com, "AdL" <kolaasen@...> wrote:
>
> Dear Joyce:
>
> Thank you so much for your reply! I am completely new to
> IGF-1...is it used to treat menopausal symptoms? I am not in
> menopause yet, but my doctor discovered I was quite low on IGF-1,
> and we have read studies that it can help with Chronic Fatigue
> Syndrome symptoms, which I have in addition to (suspected)
> Dercum's. We are still in the diagnosis stage for Dercum's, but
> my doctor and I are feeling fairly certain that I do have
> Dercum's. We thought perhaps IGF-1 would help with Dercum's
> symptoms, as well, (I hope, I hope) because Dr. Karen mentioned
> it on her recommendations page.
>
> I, too, have hypothyroidism, so I will take that into
> consideration, thanks! I will keep the Effector in mind for the
> future, too. I am so happy for you that you found something that
> works for you. :-) Have a lovely day, Joyce!
>
> Very Truly Yours,
> Angelique
>
>   _____
>
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Joyce White
> Sent: Wednesday, January 28, 2009 12:19 PM
> To: dercums_disease@yahoogroups.com
> Subject: RE: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> Deficiency Questions
>
>
>
> My Dr. told me that I can't take any type of hormone replacement,
> natural, or otherwise. I had a total hysterectomy and I also have
> blood clotting Factor V Lieden.
> For my symptoms, such as getting hot flashes, warm, and emotions
> he gave me Effector saying that is one thing they find helps for
> those who can't take hormone replacement. It has worked for me.
> I also have a hypothyroidism and was told the natural hormone
> could mess up that....hope this helps.
> Joyce
>
>
>
>
>
>
>
>
>   _____
>
>
> To: Dercums_Disease@yahoogroups.com
> From: kolaasen@...
> Date: Wed, 28 Jan 2009 07:58:05 +0000
> Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1
> Deficiency Questions
>
>
>
> Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
>
> I am new to both Dercum's and this forum (I must confess, I have
> been lurking for a couple months (keep me anyway??)), and I am
> grateful to everyone who has shared with the group, because I
> have certainly learned a lot in those two months. Thank you all!
>
> My doctor asked me to forward some questions to you, Dr. Karen,
> regarding IGF-1 deficiency. Here is my relevant background
> information, in brief (I hope!):
>
> I first became sick with CFIDS in 1987 (age 20), and was finally
> diagnosed in 1992. I discovered my first painful lipoma (right
> forearm) in 1991, which was dismissed as a benign lipoma that was
> NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase
> of CFIDS lasted until approximately 1996, at which point I was
> able to function at a more normal level, meaning I no longer
> slept 20 hours a day, and the fevers, sore throats, swollen
> glands, etc. were no longer the norm. I returned to work in 1999,
> and at the same time I indulged in an exercise binge (meaning 3
> to 4 hours, including both aerobic and weights). At the time, I
> noticed veins popping out on my arms and legs, but it was not
> until years later that I realized the veins were pushed out by
> lipomas that formed under the veins. More recently, in 2006, I
> succumbed to another exercise binge (only 2 hours a day), and
> that is when my lipomas really began to proliferate.
> Concomitantly, I began to have unexplained, and still
> uncontrolled, tachycardia and dyspnea. I have not recovered from
> the illness brought on at that time, which I now believe to be
> Dercum's.
>
> Following your testing protocols, most of my labs returned within
> the normal range except for aluminum, which was slightly elevated
> (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low
> IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63
> ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
>
> 1.
>
>  How does IGF-1 deficiency interact with or affect
> Dercum's? Is it causative? Is it a resultive? Unrelated?
> 2.
>
>  Do you recommend treatment of IGF-1 deficiency?
> 3.
>
>  If so, under what conditions do you advocate treatment?
> How low should the IGF-1 be? Do you look for certain symptoms to
> treat?
> 4.
>
>  If so, do you treat with Growth Hormone, Insulin-like
> Growth Factor, or something else?
> 5.
>
>  Are there situations during which one should definitely
> NOT treat IGF-1 deficiency?
> 6.
>
>  What are the risks associated with GH or IGF treatment?
> 7.
>
>  Is treatment even possible? My doctor is under the
> impression that GH/IGF-1 is illegal in the U.S., but I am not
> finding confirmation of that on the Internet.
>
> To the rest of the list, please feel free to share any
> information or experiences you have with IGF-1. I appreciate all
> input. And thanks for giving me the opportunity to ask these
> questions. Have a lovely day!
>
> Very Truly Yours,
> Angelique
>
> He has made everything beautiful in its time. Ecclesiastes 3:11
> .
>
> <http://geo.yahoo.com/serv?s=97359714/grpId=1371922/grpspId=17050
> 61589/msgId=27232/stime=1233170356/nc1=4025373/nc2=5202317/nc3=51
> 70417>
>

#27238 From: "AdL" <kolaasen@...>
Date: Thu Jan 29, 2009 9:20 pm
Subject: RE: For Dr. Karen Herbst — IGF-1 Deficiency Questions
andel1979
Offline Offline
Send Email Send Email
 
Dear Joyce:
 
Thank you so much for your reply! I am completely new to IGF-1...is it used to treat menopausal symptoms? I am not in menopause yet, but my doctor discovered I was quite low on IGF-1, and we have read studies that it can help with Chronic Fatigue Syndrome symptoms, which I have in addition to (suspected) Dercum's. We are still in the diagnosis stage for Dercum's, but my doctor and I are feeling fairly certain that I do have Dercum's. We thought perhaps IGF-1 would help with Dercum's symptoms, as well, (I hope, I hope) because Dr. Karen mentioned it on her recommendations page.
 
I, too, have hypothyroidism, so I will take that into consideration, thanks! I will keep the Effector in mind for the future, too. I am so happy for you that you found something that works for you. :-) Have a lovely day, Joyce!
 
Very Truly Yours,
Angelique


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Joyce White
Sent: Wednesday, January 28, 2009 12:19 PM
To: dercums_disease@yahoogroups.com
Subject: RE: [Dercums_Disease] For Dr. Karen Herbst — IGF-1 Deficiency Questions

My Dr. told me that I can't take any type of hormone replacement, natural, or otherwise. I had a total hysterectomy and I also have blood clotting Factor V Lieden.
For my symptoms, such as getting hot flashes, warm, and emotions he gave me Effector saying that is one thing they find helps for those who can't take hormone replacement. It has worked for me.
I also have a hypothyroidism and was told the natural hormone could mess up that....hope this helps.
Joyce








To: Dercums_Disease@yahoogroups.com
From: kolaasen@gmail.com
Date: Wed, 28 Jan 2009 07:58:05 +0000
Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1 Deficiency Questions


Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
 
I am new to both Dercum's and this forum (I must confess, I have been lurking for a couple months (keep me anyway??)), and I am grateful to everyone who has shared with the group, because I have certainly learned a lot in those two months. Thank you all!
 
My doctor asked me to forward some questions to you, Dr. Karen, regarding IGF-1 deficiency. Here is my relevant background information, in brief (I hope!):
I first became sick with CFIDS in 1987 (age 20), and was finally diagnosed in 1992. I discovered my first painful lipoma (right forearm) in 1991, which was dismissed as a benign lipoma that was NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase of CFIDS lasted until approximately 1996, at which point I was able to function at a more normal level, meaning I no longer slept 20 hours a day, and the fevers, sore throats, swollen glands, etc. were no longer the norm. I returned to work in 1999, and at the same time I indulged in an exercise binge (meaning 3 to 4 hours, including both aerobic and weights). At the time, I noticed veins popping out on my arms and legs, but it was not until years later that I realized the veins were pushed out by lipomas that formed under the veins. More recently, in 2006, I succumbed to another exercise binge (only 2 hours a day), and that is when my lipomas really began to proliferate. Concomitantly, I began to have unexplained, and still uncontrolled, tachycardia and dyspnea. I have not recovered from the illness brought on at that time, which I now believe to be Dercum's.
 
Following your testing protocols, most of my labs returned within the normal range except for aluminum, which was slightly elevated (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63 ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
    1. How does IGF-1 deficiency interact with or affect Dercum's? Is it causative? Is it a resultive? Unrelated?
    2. Do you recommend treatment of IGF-1 deficiency?
    3. If so, under what conditions do you advocate treatment? How low should the IGF-1 be? Do you look for certain symptoms to treat?
    4. If so, do you treat with Growth Hormone, Insulin-like Growth Factor, or something else?
    5. Are there situations during which one should definitely NOT treat IGF-1 deficiency?
    6. What are the risks associated with GH or IGF treatment?
    7. Is treatment even possible? My doctor is under the impression that GH/IGF-1 is illegal in the U.S., but I am not finding confirmation of that on the Internet.
To the rest of the list, please feel free to share any information or experiences you have with IGF-1. I appreciate all input. And thanks for giving me the opportunity to ask these questions. Have a lovely day!
 
Very Truly Yours,
Angelique
 
He has made everything beautiful in its time. Ecclesiastes 3:11
.

#27237 From: Karen Krzeminski <kamperk06@...>
Date: Thu Jan 29, 2009 2:22 pm
Subject: RE: Re Remission
aqua12062
Offline Offline
Send Email Send Email
 
I have to admit there are times when my pain LESSENS but it never goes away. I had such a lousy flare from last Friday-yesterday
I thought I had strep throat or something and went to my PCP for a strep test. Temps were 100.8 and throat hurt so badly, stiff neck
and OH MY GOSH, pain was terrible!! I was very ill.
It was just a flare and now I know to recognize it as that and not run off to my PCP. :0) I wear him out as it is.
Karen K...

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org







To: Dercums_Disease@yahoogroups.com
From: afikaufman1@...
Date: Thu, 29 Jan 2009 00:24:27 -0600
Subject: [Dercums_Disease] Re Remission


Hi everyone,  I have been mia for some time.  I read the emails and need to respond to this one because my pains do lessen from time to time.  I have gone sometimes for weeks with little or no pain and have called this a remission.  It is a remission from pain, not from dercums or lipomas because I do still have those.  As much as I wish they would, I doubt they will go away.
I am always grateful for those periods of remission from pains and wish everyone can experience it too.  I have no advise to offer as to how this happens because I have made no changes to bring this about. 
However, since around Jan 9th my entire lower body had been in extreme pain.  Again, no explanation - this is Dercums and there is so much we don't understand about it. We just learn to live with it and appreciate the good days (remission) and do the best we can with the bad ones (flares).
Hugs,
SylviaS




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#27236 From: "placidcharmer" <placidcharmer@...>
Date: Thu Jan 29, 2009 1:56 pm
Subject: Where the Sidewalk Ends...Shel Silverstein
placidcharmer
Offline Offline
Send Email Send Email
 
I read this poem years ago in school.  I smiled when I just ran
across it online.  I loved this poem as a teenager and just wanted to
share.


Where the Sidewalk Ends
by Shel Silverstein

There is a place where the sidewalk ends
And before the street begins,
And there the grass grows soft and white,
And there the sun burns crimson bright,
And there the moon-bird rests from his flight
To cool in the peppermint wind.

Let us leave this place where the smoke blows black
And the dark street winds and bends.
Past the pits where the asphalt flowers grow
We shall walk with a walk that is measured and slow,
And watch where the chalk-white arrows go
To the place where the sidewalk ends.

Yes we'll walk with a walk that is measured and slow,
And we'll go where the chalk-white arrows go,
For the children, they mark, and the children, they know
The place where the sidewalk ends.

I hope you enjoyed,
Christine

#27235 From: "sylvia seymour" <afikaufman1@...>
Date: Thu Jan 29, 2009 6:24 am
Subject: Re Remission
afikaufman
Offline Offline
Send Email Send Email
 
Hi everyone,  I have been mia for some time.  I read the emails and need to respond to this one because my pains do lessen from time to time.  I have gone sometimes for weeks with little or no pain and have called this a remission.  It is a remission from pain, not from dercums or lipomas because I do still have those.  As much as I wish they would, I doubt they will go away.
I am always grateful for those periods of remission from pains and wish everyone can experience it too.  I have no advise to offer as to how this happens because I have made no changes to bring this about. 
However, since around Jan 9th my entire lower body had been in extreme pain.  Again, no explanation - this is Dercums and there is so much we don't understand about it. We just learn to live with it and appreciate the good days (remission) and do the best we can with the bad ones (flares).
Hugs,
SylviaS

#27234 From: Suzi More <suzimore92@...>
Date: Thu Jan 29, 2009 4:05 am
Subject: Re: DD Remission
suzisblue
Offline Offline
Send Email Send Email
 
I think not, evidently everything I have told my Primary and given to
him to read from the web and Dr. Herbst has been forgotten.
He did tell me a while ago that I needed to let the Rheumatologist
handle my condition because he did not feel comfortable prescribing
pain meds for me. So, this massage will be wasted.
Suzi


From: Karen Krzeminski <kamperk06@...>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Wednesday, January 28, 2009 8:08:24 PM
Subject: RE: [Dercums_Disease] DD Remission

"complimentary "free" massage"
Ummmm...no!! I do not think so! lol...Noway at all I'd survive a massage! lol

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org





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#27233 From: Karen Krzeminski <kamperk06@...>
Date: Thu Jan 29, 2009 1:08 am
Subject: RE: DD Remission
aqua12062
Offline Offline
Send Email Send Email
 
"complimentary "free" massage"
Ummmm...no!! I do not think so! lol...Noway at all I'd survive a massage! lol

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org





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#27232 From: Joyce White <joycenlv@...>
Date: Wed Jan 28, 2009 7:19 pm
Subject: RE: For Dr. Karen Herbst — IGF-1 Deficiency Questions
joycenreno2
Offline Offline
Send Email Send Email
 
My Dr. told me that I can't take any type of hormone replacement, natural, or otherwise. I had a total hysterectomy and I also have blood clotting Factor V Lieden.
For my symptoms, such as getting hot flashes, warm, and emotions he gave me Effector saying that is one thing they find helps for those who can't take hormone replacement. It has worked for me.
I also have a hypothyroidism and was told the natural hormone could mess up that....hope this helps.
Joyce








To: Dercums_Disease@yahoogroups.com
From: kolaasen@...
Date: Wed, 28 Jan 2009 07:58:05 +0000
Subject: [Dercums_Disease] For Dr. Karen Herbst — IGF-1 Deficiency Questions


Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
 
I am new to both Dercum's and this forum (I must confess, I have been lurking for a couple months (keep me anyway??)), and I am grateful to everyone who has shared with the group, because I have certainly learned a lot in those two months. Thank you all!
 
My doctor asked me to forward some questions to you, Dr. Karen, regarding IGF-1 deficiency. Here is my relevant background information, in brief (I hope!):
I first became sick with CFIDS in 1987 (age 20), and was finally diagnosed in 1992. I discovered my first painful lipoma (right forearm) in 1991, which was dismissed as a benign lipoma that was NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase of CFIDS lasted until approximately 1996, at which point I was able to function at a more normal level, meaning I no longer slept 20 hours a day, and the fevers, sore throats, swollen glands, etc. were no longer the norm. I returned to work in 1999, and at the same time I indulged in an exercise binge (meaning 3 to 4 hours, including both aerobic and weights). At the time, I noticed veins popping out on my arms and legs, but it was not until years later that I realized the veins were pushed out by lipomas that formed under the veins. More recently, in 2006, I succumbed to another exercise binge (only 2 hours a day), and that is when my lipomas really began to proliferate. Concomitantly, I began to have unexplained, and still uncontrolled, tachycardia and dyspnea. I have not recovered from the illness brought on at that time, which I now believe to be Dercum's.
 
Following your testing protocols, most of my labs returned within the normal range except for aluminum, which was slightly elevated (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63 ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
    1. How does IGF-1 deficiency interact with or affect Dercum's? Is it causative? Is it a resultive? Unrelated?
    2. Do you recommend treatment of IGF-1 deficiency?
    3. If so, under what conditions do you advocate treatment? How low should the IGF-1 be? Do you look for certain symptoms to treat?
    4. If so, do you treat with Growth Hormone, Insulin-like Growth Factor, or something else?
    5. Are there situations during which one should definitely NOT treat IGF-1 deficiency?
    6. What are the risks associated with GH or IGF treatment?
    7. Is treatment even possible? My doctor is under the impression that GH/IGF-1 is illegal in the U.S., but I am not finding confirmation of that on the Internet.
To the rest of the list, please feel free to share any information or experiences you have with IGF-1. I appreciate all input. And thanks for giving me the opportunity to ask these questions. Have a lovely day!
 
Very Truly Yours,
Angelique
 
He has made everything beautiful in its time. Ecclesiastes 3:11
 




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#27231 From: Suzi More <suzimore92@...>
Date: Wed Jan 28, 2009 4:45 pm
Subject: Re: DD Remission
suzisblue
Offline Offline
Send Email Send Email
 
My Primary doctor gave me a complimentary "free" massage that was part of a promo being given by the new Spa that opened in the Medical group this past September, have I used it? it is worth over $90..00, I am frightened to use this "free" complimentary massage because of the pain it will cause me. I cannot have anything touch my shoulders, not even my hair when I come out of the shower.  I not only have a Gout Flareup this past month but the tumors on the bottoms of my feet are pressing and painful. I have 
pain in various areas of my gut when trying to sleep at night, I have cramping in my fingers when I try to write for long periods of time, I have pain in my elbows. I have lipomas in the back of my skull, I have lipomas pressing on the back of my right lung, I took a trip to see the pulmonologist last week to find this out, thought they were in my lung. I will see the Pain Specialist this afternoon so he can decide whether or not I need more Tramadol, he hasn't seen me since August. How could I not need more Tramadol?
This pain is not going away. This pain is Dercums. Do I need anyone to give me spiritual advice? No, I need another script for the pain meds.
Suzi


From: Karen Krzeminski <kamperk06@...>
To: My Group <dercums_disease@yahoogroups.com>
Sent: Wednesday, January 28, 2009 9:07:48 AM
Subject: RE: [Dercums_Disease] DD Remission

There's a group for people with just lipoma's on yahoo groups. Lipoma's are not usually painful. It seems to be that with this Dercums we have PAIN with our lumps along with ALL KINDS of other systemic problems that make our life a living HELL!. The doctors are all perplexed with this revelation because pain is not associated with lipoma's. That's what we're ALWAYS TOLD and get sick and tired of hearing! lol...

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org





To: dercums_disease@ yahoogroups. com
From: veronika117@ msn.com
Date: Tue, 27 Jan 2009 22:48:08 -0500
Subject: RE: [Dercums_Disease] DD Remission

I have concluded that all of my issues from the past are not DD, but "something" with the lipomas.  I have not had "pain" or fatigue in a few years.  I changed my life drastically then with my diet and everything holistically possible (well not everything), but accupuncture, meditation/prayer, macrobiotics, Reiki, massage...  After reading more and more of the posts here and getting feedback it is a group consensus that I never truly had the disorder.  I have met many people in the last several years with lipomas; some with pain and some not.  Lipomas are not something that people usually talk about, but it came up more frequently.  Lipomas are common, but DD is not.  I know that all lipomas are not the same.  I did have one confirmed encapsulated one; it is the only one that I had removed. The few I have in my left arm do not hurt now.

Veronica






To: Dercums_Disease@ yahoogroups. com
From: yankeestovall@ aol.com
Date: Tue, 27 Jan 2009 21:00:28 -0500
Subject: Re: [Dercums_Disease] DD Remission

After about a year of all the symptoms I was free from pain and fatigue for almost a year.  The lipomas did not go away and would hurt if pressed on but did not hurt otherwise.  Wish it would happen again and for all of us. Hugs, Joan
 
In a message dated 1/27/2009 20:56:52 Eastern Standard Time, suri@insightbb. com writes:
I saw that Veronica has 'remissions' with her DD and I wondered if anyone else has remissions.  I had one this morning that lasted about 6 hours, LOL...  barely any pain!  I cleaned my whole house (with two floors and three bathrooms!)  I vacuumed with very little pain.  Usually I can't vacuum without having really bad stab pains, even with my self propelled Kirby!  I was so excited as I was cleaning!
 
Oh but then it came back!  sob, sob, LOL!
 
I am just curious how many have 'remissions' or how much time others have had without pain. I went three days a few months ago with very light pain...  no reason or explanation why, I guess the disease just gave me break that week!
 
Hugs,
Suri
 
http://photos.vfxy.com/link/post/741925
 
_,_._,___





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#27230 From: "andel1979" <kolaasen@...>
Date: Wed Jan 28, 2009 7:58 am
Subject: For Dr. Karen Herbst — IGF-1 Deficiency Questions
andel1979
Offline Offline
Send Email Send Email
 
Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
 
I am new to both Dercum's and this forum (I must confess, I have been lurking for a couple months (keep me anyway??)), and I am grateful to everyone who has shared with the group, because I have certainly learned a lot in those two months. Thank you all!
 
My doctor asked me to forward some questions to you, Dr. Karen, regarding IGF-1 deficiency. Here is my relevant background information, in brief (I hope!):
I first became sick with CFIDS in 1987 (age 20), and was finally diagnosed in 1992. I discovered my first painful lipoma (right forearm) in 1991, which was dismissed as a benign lipoma that was NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase of CFIDS lasted until approximately 1996, at which point I was able to function at a more normal level, meaning I no longer slept 20 hours a day, and the fevers, sore throats, swollen glands, etc. were no longer the norm. I returned to work in 1999, and at the same time I indulged in an exercise binge (meaning 3 to 4 hours, including both aerobic and weights). At the time, I noticed veins popping out on my arms and legs, but it was not until years later that I realized the veins were pushed out by lipomas that formed under the veins. More recently, in 2006, I succumbed to another exercise binge (only 2 hours a day), and that is when my lipomas really began to proliferate. Concomitantly, I began to have unexplained, and still uncontrolled, tachycardia and dyspnea. I have not recovered from the illness brought on at that time, which I now believe to be Dercum's.
 
Following your testing protocols, most of my labs returned within the normal range except for aluminum, which was slightly elevated (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63 ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
    1. How does IGF-1 deficiency interact with or affect Dercum's? Is it causative? Is it a resultive? Unrelated?
    2. Do you recommend treatment of IGF-1 deficiency?
    3. If so, under what conditions do you advocate treatment? How low should the IGF-1 be? Do you look for certain symptoms to treat?
    4. If so, do you treat with Growth Hormone, Insulin-like Growth Factor, or something else?
    5. Are there situations during which one should definitely NOT treat IGF-1 deficiency?
    6. What are the risks associated with GH or IGF treatment?
    7. Is treatment even possible? My doctor is under the impression that GH/IGF-1 is illegal in the U.S., but I am not finding confirmation of that on the Internet.
To the rest of the list, please feel free to share any information or experiences you have with IGF-1. I appreciate all input. And thanks for giving me the opportunity to ask these questions. Have a lovely day!
 
Very Truly Yours,
Angelique
 
He has made everything beautiful in its time. Ecclesiastes 3:11
 

#27229 From: "AdL" <kolaasen@...>
Date: Wed Jan 28, 2009 5:58 am
Subject: For Dr. Karen Herbst — IGF-1 Deficiency Questions
andel1979
Offline Offline
Send Email Send Email
 
Dear Dr. Karen & Dercum's Group: (Warning: Long Post)
 
I am new to both Dercum's and this forum (I must confess, I have been lurking for a couple months (keep me anyway??)), and I am grateful to everyone who has shared with the group, because I have certainly learned a lot in those two months. Thank you all!
 
My doctor asked me to forward some questions to you, Dr. Karen, regarding IGF-1 deficiency. Here is my relevant background information, in brief (I hope!):
I first became sick with CFIDS in 1987 (age 20), and was finally diagnosed in 1992. I discovered my first painful lipoma (right forearm) in 1991, which was dismissed as a benign lipoma that was NOT painful. (Funny, it still SEEMED to hurt ;-) ) My acute phase of CFIDS lasted until approximately 1996, at which point I was able to function at a more normal level, meaning I no longer slept 20 hours a day, and the fevers, sore throats, swollen glands, etc. were no longer the norm. I returned to work in 1999, and at the same time I indulged in an exercise binge (meaning 3 to 4 hours, including both aerobic and weights). At the time, I noticed veins popping out on my arms and legs, but it was not until years later that I realized the veins were pushed out by lipomas that formed under the veins. More recently, in 2006, I succumbed to another exercise binge (only 2 hours a day), and that is when my lipomas really began to proliferate. Concomitantly, I began to have unexplained, and still uncontrolled, tachycardia and dyspnea. I have not recovered from the illness brought on at that time, which I now believe to be Dercum's.
 
Following your testing protocols, most of my labs returned within the normal range except for aluminum, which was slightly elevated (normal for my lab: <7 mcg/L, my result: 8 mcg/L), and quite low IGF-1 (normal for my lab: 112-296 ng/mL, my results: (1st) 63 ng/mL, (2nd) 59 ng/mL) Our questions regarding the IGF-1 are:
    1. How does IGF-1 deficiency interact with or affect Dercum's? Is it causative? Is it a resultive? Unrelated?
    2. Do you recommend treatment of IGF-1 deficiency?
    3. If so, under what conditions do you advocate treatment? How low should the IGF-1 be? Do you look for certain symptoms to treat?
    4. If so, do you treat with Growth Hormone, Insulin-like Growth Factor, or something else?
    5. Are there situations during which one should definitely NOT treat IGF-1 deficiency?
    6. What are the risks associated with GH or IGF treatment?
    7. Is treatment even possible? My doctor is under the impression that GH/IGF-1 is illegal in the U.S., but I am not finding confirmation of that on the Internet.
To the rest of the list, please feel free to share any information or experiences you have with IGF-1. I appreciate all input. And thanks for giving me the opportunity to ask these questions. Have a lovely day!
 
Very Truly Yours,
Angelique
 
He has made everything beautiful in its time. Ecclesiastes 3:11
 

#27228 From: Karen Krzeminski <kamperk06@...>
Date: Wed Jan 28, 2009 2:07 pm
Subject: RE: DD Remission
aqua12062
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Send Email Send Email
 
There's a group for people with just lipoma's on yahoo groups. Lipoma's are not usually painful. It seems to be that with this Dercums we have PAIN with our lumps along with ALL KINDS of other systemic problems that make our life a living HELL!. The doctors are all perplexed with this revelation because pain is not associated with lipoma's. That's what we're ALWAYS TOLD and get sick and tired of hearing! lol...

 
 Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org





To: dercums_disease@yahoogroups.com
From: veronika117@...
Date: Tue, 27 Jan 2009 22:48:08 -0500
Subject: RE: [Dercums_Disease] DD Remission

I have concluded that all of my issues from the past are not DD, but "something" with the lipomas.  I have not had "pain" or fatigue in a few years.  I changed my life drastically then with my diet and everything holistically possible (well not everything), but accupuncture, meditation/prayer, macrobiotics, Reiki, massage...  After reading more and more of the posts here and getting feedback it is a group consensus that I never truly had the disorder.  I have met many people in the last several years with lipomas; some with pain and some not.  Lipomas are not something that people usually talk about, but it came up more frequently.  Lipomas are common, but DD is not.  I know that all lipomas are not the same.  I did have one confirmed encapsulated one; it is the only one that I had removed. The few I have in my left arm do not hurt now.

Veronica






To: Dercums_Disease@yahoogroups.com
From: yankeestovall@aol.com
Date: Tue, 27 Jan 2009 21:00:28 -0500
Subject: Re: [Dercums_Disease] DD Remission

After about a year of all the symptoms I was free from pain and fatigue for almost a year.  The lipomas did not go away and would hurt if pressed on but did not hurt otherwise.  Wish it would happen again and for all of us. Hugs, Joan
 
In a message dated 1/27/2009 20:56:52 Eastern Standard Time, suri@insightbb.com writes:
I saw that Veronica has 'remissions' with her DD and I wondered if anyone else has remissions.  I had one this morning that lasted about 6 hours, LOL...  barely any pain!  I cleaned my whole house (with two floors and three bathrooms!)  I vacuumed with very little pain.  Usually I can't vacuum without having really bad stab pains, even with my self propelled Kirby!  I was so excited as I was cleaning!
 
Oh but then it came back!  sob, sob, LOL!
 
I am just curious how many have 'remissions' or how much time others have had without pain. I went three days a few months ago with very light pain...  no reason or explanation why, I guess the disease just gave me break that week!
 
Hugs,
Suri
 
http://photos.vfxy.com/link/post/741925
 
_,_._,___





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#27227 From: veronica bojerski <veronika117@...>
Date: Wed Jan 28, 2009 3:48 am
Subject: RE: DD Remission
vbojerski
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I have concluded that all of my issues from the past are not DD, but "something" with the lipomas.  I have not had "pain" or fatigue in a few years.  I changed my life drastically then with my diet and everything holistically possible (well not everything), but accupuncture, meditation/prayer, macrobiotics, Reiki, massage...  After reading more and more of the posts here and getting feedback it is a group consensus that I never truly had the disorder.  I have met many people in the last several years with lipomas; some with pain and some not.  Lipomas are not something that people usually talk about, but it came up more frequently.  Lipomas are common, but DD is not.  I know that all lipomas are not the same.  I did have one confirmed encapsulated one; it is the only one that I had removed. The few I have in my left arm do not hurt now.

Veronica






To: Dercums_Disease@yahoogroups.com
From: yankeestovall@...
Date: Tue, 27 Jan 2009 21:00:28 -0500
Subject: Re: [Dercums_Disease] DD Remission

After about a year of all the symptoms I was free from pain and fatigue for almost a year.  The lipomas did not go away and would hurt if pressed on but did not hurt otherwise.  Wish it would happen again and for all of us. Hugs, Joan
 
In a message dated 1/27/2009 20:56:52 Eastern Standard Time, suri@... writes:
I saw that Veronica has 'remissions' with her DD and I wondered if anyone else has remissions.  I had one this morning that lasted about 6 hours, LOL...  barely any pain!  I cleaned my whole house (with two floors and three bathrooms!)  I vacuumed with very little pain.  Usually I can't vacuum without having really bad stab pains, even with my self propelled Kirby!  I was so excited as I was cleaning!
 
Oh but then it came back!  sob, sob, LOL!
 
I am just curious how many have 'remissions' or how much time others have had without pain. I went three days a few months ago with very light pain...  no reason or explanation why, I guess the disease just gave me break that week!
 
Hugs,
Suri
 
http://photos.vfxy.com/link/post/741925
 

_,_._,___





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#27226 From: lenightmoods@...
Date: Wed Jan 28, 2009 4:56 am
Subject: Re: Another Question for Dr. H's trip
lenightmoods
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Check out Dr. Herbst letter attached and try dercumsdisease.org or lipomadoc.org her website to answer some or most of these questions also th dercums archives on yahoo support groups.. Hope this helps


#27225 From: yankeestovall@...
Date: Tue Jan 27, 2009 9:00 pm
Subject: Re: DD Remission
brunerjoan
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After about a year of all the symptoms I was free from pain and fatigue for almost a year.  The lipomas did not go away and would hurt if pressed on but did not hurt otherwise.  Wish it would happen again and for all of us. Hugs, Joan
 
In a message dated 1/27/2009 20:56:52 Eastern Standard Time, suri@... writes:

I saw that Veronica has 'remissions' with her DD and I wondered if anyone else has remissions.  I had one this morning that lasted about 6 hours, LOL...  barely any pain!  I cleaned my whole house (with two floors and three bathrooms!)  I vacuumed with very little pain.  Usually I can't vacuum without having really bad stab pains, even with my self propelled Kirby!  I was so excited as I was cleaning!
 
Oh but then it came back!  sob, sob, LOL!
 
I am just curious how many have 'remissions' or how much time others have had without pain. I went three days a few months ago with very light pain...  no reason or explanation why, I guess the disease just gave me break that week!
 
Hugs,
Suri
 
http://photos.vfxy.com/link/post/741925
 

_,_._,___




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#27224 From: Suri <suri@...>
Date: Wed Jan 28, 2009 1:56 am
Subject: DD Remission
suri_chimom
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Send Email Send Email
 
I saw that Veronica has 'remissions' with her DD and I wondered if anyone else has remissions.  I had one this morning that lasted about 6 hours, LOL...  barely any pain!  I cleaned my whole house (with two floors and three bathrooms!)  I vacuumed with very little pain.  Usually I can't vacuum without having really bad stab pains, even with my self propelled Kirby!  I was so excited as I was cleaning!
 
Oh but then it came back!  sob, sob, LOL!
 
I am just curious how many have 'remissions' or how much time others have had without pain. I went three days a few months ago with very light pain...  no reason or explanation why, I guess the disease just gave me break that week!
 
Hugs,
Suri
 
Sweet Heart
 

_,_._,___



#27223 From: Sherry Fox <shefox908@...>
Date: Wed Jan 28, 2009 1:51 am
Subject: RE: Beating DD by staying positive. Facilitating Change
shefox908
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Now I'm lost. I do not like being rude, but you sound so self indulged and so out of touch with what is going on here that perhaps you should speak to someone that can bring you back down to earth. By the way, I read your response to me in a women's newspaper that was free at the library.
 
Sherry

veronica bojerski <veronika117@...> wrote:
Sherry, did you get my response?

Veronica





To: Dercums_Disease@yahoogroups.com
From: shefox908@yahoo.com
Date: Tue, 27 Jan 2009 09:52:38 -0800
Subject: Re: [Dercums_Disease] Beating DD by staying positive. Facilitating Change

Dear veronica,
 
It seems like you are taking a hell of a bashing in regards to your positive outlook and your description of your Dercums not being like the rest of ours--I believe. If you wrer dx'd with DD, then I do believe you have it. When you tell us that your DD seem's to be in some type of remission for some lengthly time now, I believe you. It pisses me off , but it is what it is. I would like to tell you thet you do not piss me off and that I am very glad for you and I hope that you stay in "renmmission" for as long as possible.
 
Actually I think that it is a very good thing fore DR K to know that "some" people can go into remmission like you, while others simply go down, down, down. To me it seems like Dr K would really want to study you the most to see what it is about you genically or otherwise that DD is not as destructive as it usually is. I know that you are a positive person, And that is great, but I,ve studied human genetics and believe that your genitic makeup is allowing your DD to not ravish you. Plesse try to understand those of us who might have a hard time wondering why they are not like you--I must admit that I am one of them.
 
Veronica, I recently went to the Human Society in my area which was bombarded due to the new arrival of  40 plus cats that were swiftly removed from an old lady's home in Akron when neighbors called the authorities about the stench. She told the press and the authrities that she was only taking in stray cats to feed and shelter them but they kept on breeding and she had no money to have them fixed. So the media was pleading to the public to go there and adopt a cat as the facility was way, way, over it's capicity since prior to the arrival of the 40 something cats new kittens, they were already over their animal capicity. So I went there and adopted one young male and two kittens--one male, one female. Well they all ended up having the same contagious disease which is common with cats and the is the herpes virus. I have had all three in the vets office two of them more than oncefor the same thing herpes. With cats the herpes virus is a respitory ailment,it's not like herpes in humans. Well from the very beginning, the vet told me that he wa most concerned about the female kitten the most. The oldest cat maybe 1 yr, I guess is in remission. The two younger kittens are the sickest, though the male kitten is far better from the female. It looks like I may loose the female, which sadens me very, very much. My point here is that we are all different, and we are all being diminished by this DD differently than others.
 
Veronica, I hope that all of the negativity you have received lately does not stress you to the point where you might come out of this remission. Take advatage lady because you never know when this ugly beast may greet you one morning when it's making it's rounds.
 
Take Care,
 
Sherry

veronica bojerski <veronika117@msn.com> wrote:
I work with my counseling client's to assist them in facilitating their own change and healing. In order to heal it is imperative for an individual to believe that change is possible. I hope that the following may be helpful to you.
 
I believe that the ingredients to a successful process of CHANGE are : stepping out of my comfort zone...realizing that the risk to not making changes is greater than the risk of changing...utilizing goals to inspire me to keep moving forward in any area...being creative...having dedication...my faith...new attitudes and new habits towards skills and knowledge required...independance...willingness to be different/alone...focusing on positives/imagining what I want...consciously liking and respecting myself...recognizing that mistakes are stepping stones to achievement...remembering that life is a journey to be embraced one day at a time...

Veronica





To: Dercums_Disease@yahoogroups.com
From: yankeestovall@aol.com
Date: Sat, 24 Jan 2009 12:10:43 -0500
Subject: Re: [Dercums_Disease] Re: Beating DD by staying positive? No....

Amen, Judi and Will!
 
In a message dated 1/23/2009 11:46:04 Eastern Standard Time, nonny46@yahoo.com writes:
VERY well said, Will! I'm all for being positive, as you know by now,
but all the positivity in the world will not change the cold hard
facts, that I have Dercum's, and (at this point in time) there is no
cure. OK, so I live with it and try not to become buried by it. True,
there are documented "miracles" where people have been healed of
diseases, but as my faith isn't quite up to that, I'll be happy
muddling along with my brothers and sisters here until something comes
along!

Judi




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#27222 From: Suzi More <suzimore92@...>
Date: Wed Jan 28, 2009 12:43 am
Subject: Re: Veronica Re: Beating DD by staying positive. Facilitating Change
suzisblue
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Send Email Send Email
 
Forty-seven years ago I was nine years old, I jumped into an above ground pool in the back of my parent's house. I slipped and fell on the ground and on a cement walk next to the pool, I hit my right ankle on the cement walk.
 
In a few days, the ankle started swelling and I endured horrific pain for over a week, my mother was a devout Christian Scientist who refused to take me to the doctor because she was praying to know the "Truth" about my situation, that as a child of God, I was a reflection of his perfection and how then, could anything be wrong with me.
 
Thank God, my father was a Catholic and brought me to the doctor, I ended up in the hospital with Osteomyelitis in my ankle, they took out some of the ankle bone and put in some chips, I had a staph infection and no one came to see me.
 
I will never forget my well-meaning mother who had such a "positive" attitude and no true concern for my health or the pain I was in. Pain each night that was so intense I would wake up screaming in fear with a sharp shooting pain in the bone.
 
I have no need for any well-meaning or helpful people giving me advice. I have had enough advice to last for years. I have had enough doctors telling me I had to lose weight or I would die. I have had enough people telling me I need to detox, have colonics, try their juices, etc.  I stay away from churches, I am tired of people telling me they will "Pray for me or Lay hands on me."
 
All I want now is a pain patch where it hurts, a heating pad where it hurts, tumor excision when needed and a doctor who will read the info that Dr. Herbst has made available. I am sure there are others on this list that have similiar needs.
 
Every three weeks, like clockwork, I see the Rheumatologist for a shot of B12 and a shot of Gamma for my IgG deficiency. I have found out through experience that not having these shots will insure my coming down with at least two or three upper respiratory infections, a case or two of strep throat, and maybe a good case of pneumonia in the winter months. Of course, after every surgery to remove tumors, I must have prophylactic doses of antibiotics because, you guessed it, I am prone to nasty post-op infections.
 
During the Summer months, I am usually in luck, I am a teacher and have two blissful months, I stay home and do research on the web, work on new recordings, swim in a little backyard pool, relax and stay away from people and germs. But the Fall comes around and I must work again and I am near three hundred small children and their germs and the fight for my health begins again.

There is a type of Multiple Familiar Lipomastosis (MFL) (I am not sure is the spelling is correct) that has the same pain as Dercums.  Some people might have this and because the tumors that caused the most problems may have been cut out, maybe some of the pain has dissapated. I thought for a while that I may have had this because I remember seeing my father with such tumors. But, now with the newest tumor growths, all around my midriff, what seem to be small angios and a new tumor on the right side of my back pressing against the back of  my right lung, I don't think I can dismiss this as MFL at all.
 
All I want is to hear anything that seems to work for others, and I will try it too. I will learn what to ask for, I will read everything that Dr. Herbst suggests and keep up hope that someday there will be an answer. I do not need any "Pep" talks.
 
Suzi
 
 


From: frincess51 <frincess51@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, January 27, 2009 4:14:39 PM
Subject: [Dercums_Disease] Veronica Re: Beating DD by staying positive. Facilitating Change

I'm a bit confused. If you are posting on a Dercum's support group
then why would it be a problem admitting you have the disease? If you
don't, then I am really confused as to why you would even be here.
Those of us who have Dercum's freely discuss the symptoms we share and
through that come to understand we are not alone in our suffering,
which gives us positive validation. I understand the positive thinking
theory from my own uses of it, but realistically it doesn't change the
physical manifestations of the disease, only my ability to cope with it.
I also understand privacy issues, however,I am not interested in
knowing all of your personal information. But surely you realize, just
by the fact that you post, here leads one to believe that you could
have the disease..you know, the old guilt by association thing. You
can click on my group name and email me privately. It won't be posted
to the group, FYI. Just curious to know if you do in fact have Dercum's
how you have managed to overcome the physical aspects that the rest of
us who remain positive, eat correctly and do whatever possible to
maintain some semblance of our previous life have been unable to do.
Take care,
Carole

--- In Dercums_Disease@ yahoogroups. com, veronica bojerski
<veronika117@ ...> wrote:
>
>
> I would be more than happy to discuss my experience with you outside
of the forum/through personal email. I am much more discerning about
the amount of personal information that I put out for the general
public to read due to my career and family life. You can email another
address for me to contact you if you like...
>
> http://windowslive. com/explore?
ocid=TXT_TAGLM_ WL_t2_allup_ explore_012009
>



#27221 From: "frincess51" <frincess51@...>
Date: Tue Jan 27, 2009 9:14 pm
Subject: Veronica Re: Beating DD by staying positive. Facilitating Change
frincess51
Offline Offline
Send Email Send Email
 
I'm a bit confused.  If you are posting on a Dercum's support group
then why would it be a problem admitting you have the disease?  If you
don't, then I am really confused as to why you would even be here.
Those of us who have Dercum's freely discuss the symptoms we share and
through that come to understand we are not alone in our suffering,
which gives us positive validation. I understand the positive thinking
theory from my own uses of it, but realistically it doesn't change the
physical manifestations of the disease, only my ability to cope with it.
I also understand privacy issues, however,I am not interested in
knowing all of your personal information. But surely you realize, just
by the fact that you post, here leads one to believe that you could
have the disease..you know, the old guilt by association thing.  You
can click on my group name and email me privately.  It won't be posted
to the group, FYI. Just curious to know if you do in fact have Dercum's
how you have managed to overcome the physical aspects that the rest of
us who remain positive, eat correctly and do whatever possible to
maintain some semblance of our previous life have been unable to do.
Take care,
Carole

--- In Dercums_Disease@yahoogroups.com, veronica bojerski
<veronika117@...> wrote:
>
>
> I would be more than happy to discuss my experience with you outside
of the forum/through personal email.  I am much more discerning about
the amount of personal information that I put out for the general
public to read due to my career and family life.  You can email another
address for me to contact you if you like...
>
> http://windowslive.com/explore?
ocid=TXT_TAGLM_WL_t2_allup_explore_012009
>

#27220 From: veronica bojerski <veronika117@...>
Date: Tue Jan 27, 2009 9:03 pm
Subject: RE: Beating DD by staying positive. Facilitating Change
vbojerski
Offline Offline
Send Email Send Email
 
Sherry, did you get my response?

Veronica






To: Dercums_Disease@yahoogroups.com
From: shefox908@...
Date: Tue, 27 Jan 2009 09:52:38 -0800
Subject: Re: [Dercums_Disease] Beating DD by staying positive. Facilitating Change

Dear veronica,
 
It seems like you are taking a hell of a bashing in regards to your positive outlook and your description of your Dercums not being like the rest of ours--I believe. If you wrer dx'd with DD, then I do believe you have it. When you tell us that your DD seem's to be in some type of remission for some lengthly time now, I believe you. It pisses me off , but it is what it is. I would like to tell you thet you do not piss me off and that I am very glad for you and I hope that you stay in "renmmission" for as long as possible.
 
Actually I think that it is a very good thing fore DR K to know that "some" people can go into remmission like you, while others simply go down, down, down. To me it seems like Dr K would really want to study you the most to see what it is about you genically or otherwise that DD is not as destructive as it usually is. I know that you are a positive person, And that is great, but I,ve studied human genetics and believe that your genitic makeup is allowing your DD to not ravish you. Plesse try to understand those of us who might have a hard time wondering why they are not like you--I must admit that I am one of them.
 
Veronica, I recently went to the Human Society in my area which was bombarded due to the new arrival of  40 plus cats that were swiftly removed from an old lady's home in Akron when neighbors called the authorities about the stench. She told the press and the authrities that she was only taking in stray cats to feed and shelter them but they kept on breeding and she had no money to have them fixed. So the media was pleading to the public to go there and adopt a cat as the facility was way, way, over it's capicity since prior to the arrival of the 40 something cats new kittens, they were already over their animal capicity. So I went there and adopted one young male and two kittens--one male, one female. Well they all ended up having the same contagious disease which is common with cats and the is the herpes virus. I have had all three in the vets office two of them more than oncefor the same thing herpes. With cats the herpes virus is a respitory ailment,it's not like herpes in humans. Well from the very beginning, the vet told me that he wa most concerned about the female kitten the most. The oldest cat maybe 1 yr, I guess is in remission. The two younger kittens are the sickest, though the male kitten is far better from the female. It looks like I may loose the female, which sadens me very, very much. My point here is that we are all different, and we are all being diminished by this DD differently than others.
 
Veronica, I hope that all of the negativity you have received lately does not stress you to the point where you might come out of this remission. Take advatage lady because you never know when this ugly beast may greet you one morning when it's making it's rounds.
 
Take Care,
 
Sherry

veronica bojerski <veronika117@...> wrote:
I work with my counseling client's to assist them in facilitating their own change and healing. In order to heal it is imperative for an individual to believe that change is possible. I hope that the following may be helpful to you.
 
I believe that the ingredients to a successful process of CHANGE are : stepping out of my comfort zone...realizing that the risk to not making changes is greater than the risk of changing...utilizing goals to inspire me to keep moving forward in any area...being creative...having dedication...my faith...new attitudes and new habits towards skills and knowledge required...independance...willingness to be different/alone...focusing on positives/imagining what I want...consciously liking and respecting myself...recognizing that mistakes are stepping stones to achievement...remembering that life is a journey to be embraced one day at a time...

Veronica





To: Dercums_Disease@yahoogroups.com
From: yankeestovall@aol.com
Date: Sat, 24 Jan 2009 12:10:43 -0500
Subject: Re: [Dercums_Disease] Re: Beating DD by staying positive? No....

Amen, Judi and Will!
 
In a message dated 1/23/2009 11:46:04 Eastern Standard Time, nonny46@yahoo.com writes:
VERY well said, Will! I'm all for being positive, as you know by now,
but all the positivity in the world will not change the cold hard
facts, that I have Dercum's, and (at this point in time) there is no
cure. OK, so I live with it and try not to become buried by it. True,
there are documented "miracles" where people have been healed of
diseases, but as my faith isn't quite up to that, I'll be happy
muddling along with my brothers and sisters here until something comes
along!

Judi




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#27219 From: veronica bojerski <veronika117@...>
Date: Tue Jan 27, 2009 7:46 pm
Subject: RE: Veronica Re: Beating DD by staying positive. Facilitating Change
vbojerski
Offline Offline
Send Email Send Email
 
I would be more than happy to discuss my experience with you outside of the forum/through personal email.  I am much more discerning about the amount of personal information that I put out for the general public to read due to my career and family life.  You can email another address for me to contact you if you like...

Veronica





> To: Dercums_Disease@yahoogroups.com
> From: frincess51@...
> Date: Tue, 27 Jan 2009 19:22:29 +0000
> Subject: [Dercums_Disease] Veronica Re: Beating DD by staying positive. Facilitating Change
>
> Hi Veronica,
> I have one simple question for you. Do you have a definitive
> diagnosis of Dercum's Disease? It would help me understand more to
> know.
> Thanks,
> Carole
>
> --- In Dercums_Disease@yahoogroups.com, veronica bojerski
> <veronika117@...> wrote:
> >
> >
> > My encouragement for others has been misinterpretated by a few or I
> did not convey my thoughts in a readable manner... I was sharing
> some of my journaling.
> > Here I am talking about emotional well being and keeping our minds
> and hearts open for positive energy and healing to occur in a
> physical way...
> >
> > I am ONLY referring to hope. I have the utmost feelings of empathy
> for being given this "life sentence". I am sorry that your life and
> daily activities has been taken from you. I am sorry that there is
> no cure and there is no remission. I do believe that this may change
> in the future and that EACH person with DD may manifest their
> symptoms and course of illness differently from another person.
> >
> > Please forgive me if any way that I conveyed SIMPLE. I am "simply"
> attempting to offer another side of the coin because it is what I
> look for and have looked for and know that what others are looking
> for when feeling despondent. Writing in this manner (such as in an
> email) leaves some things lost.
> >
> > I do not want you or anyone to have to HAVE to feel hopeless and
> overwhelmed.
> > I know that some days it is or seems impossible. I know all too
> well about the loss of hope and ultimately the loss of life or life
> as we had known it to be. I only share my thoughts with the best of
> intentions.
> >
> >
> > http://www.windowslive-
> hotmail.com/learnmore/versatility.aspx#mobile?
> ocid=TXT_TAGHM_WL_HM_versatility_121208
> >
>
>
>
> ------------------------------------
>
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#27218 From: "frincess51" <frincess51@...>
Date: Tue Jan 27, 2009 7:22 pm
Subject: Veronica Re: Beating DD by staying positive. Facilitating Change
frincess51
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Hi Veronica,
I have one simple question for you.  Do you have a definitive
diagnosis of Dercum's Disease?  It would help me understand more to
know.
Thanks,
Carole

--- In Dercums_Disease@yahoogroups.com, veronica bojerski
<veronika117@...> wrote:
>
>
> My encouragement for others has been misinterpretated by a few or I
did not convey my thoughts in a readable manner...  I was sharing
some of my journaling.
> Here I am talking about emotional well being and keeping our minds
and hearts open for positive energy and healing to occur in a
physical way...
>
> I am ONLY referring to hope.  I have the utmost feelings of empathy
for being given this "life sentence".  I am sorry that your life and
daily activities has been taken from you.  I am sorry that there is
no cure and there is no remission. I do believe that this may change
in the future and that EACH person with DD may manifest their
symptoms and course of illness differently from another person.
>
> Please forgive me if any way that I conveyed SIMPLE.  I am "simply"
attempting to offer another side of the coin because it is what I
look for and have looked for and know that what others are looking
for when feeling despondent. Writing in this manner (such as in an
email) leaves some things lost.
>
> I do not want you or anyone to have to HAVE to feel hopeless and
overwhelmed.
> I know that some days it is or seems impossible. I know all too
well about the loss of hope and ultimately the loss of life or life
as we had known it to be.   I only share my thoughts with the best of
intentions.
>
>
> http://www.windowslive-
hotmail.com/learnmore/versatility.aspx#mobile?
ocid=TXT_TAGHM_WL_HM_versatility_121208
>

#27217 From: "Teri" <datguise@...>
Date: Tue Jan 27, 2009 6:44 pm
Subject: Re: Another Question for Dr. H's trip
jazmine_katz
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Hi all

I am very curious as to how DD may be related to hormone imbalance,
particulary testosterone, but not limited to testosterone.  When I say
hormone imbalance, I do not mean when they tell you that your hormones
are within "normal range".  I mean on an individual basis how hormone
imbalance may contribute to dibilitating physical symtoms including
cognative/emotional funtions.

Hugs all around

Teri


--- In Dercums_Disease@yahoogroups.com, Fabric100@... wrote:
>
> Thought of another one or two!
>
> 1. Please explain the difference between and how to examine an
encapsulated vs. 'nonencapsulated' lipoma.
>
> 2. What have you found to be the most effective pain control measures?
>
> I think that is it. (at least for now)
>
> Anne
>

#27216 From: Pamela Harrison <ozziespamela@...>
Date: Tue Jan 27, 2009 6:39 pm
Subject: Direct response to lowering MMPs
ozziespamela
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-
----Inline Message Follows-----
Thought you might find this interesting too! Dr Herbst ent this to me.
Hugs and spoons,
Pamela

Study links cutting calories to improvements in memory.

ABC World News (1/26, story 15, 1:45, Gibson) reported, "Some intriguing new research shows that people who go on a rigid diet and drop some pounds can actually improve their memory."

        The New York Times (1/27, D3, Belluck) adds that "eating fewer calories may lead to better memory," according to a study appearing in the January 26 edition of The Proceedings of the National Academy of Sciences. The work, "involving 50 men and women ages 50 to 72 who ranged from normal weight to overweight," may "be the first to link calorie-restricted diets with improved memory in people." For the study, a third of the subjects cut their calorie intake by 30 percent, and another third kept their calories consistent but "were instructed to increase the unsaturated fat (healthy fat) they ate by 20 percent." Meanwhile, "a third group made no dietary changes." After conducting "tests involving memorizing words," the researchers found that "the calorie-restricted group averaged 20 percent improvement in memory performance. The other groups showed no significant change."

        According to CNN (1/27, Harding), subjects "who cut calories became more sensitive to the blood sugar-regulating hormone insulin and had a drop in the inflammation-associated molecule C-reactive protein." Past evidence has linked these "factors...to an improvement in brain function." Experts suggest that "increased inflammation and a drop in insulin sensitivity (which is known as insulin resistance) may help explain why obesity and type 2 diabetes have been linked to worse mental performance and a greater risk of Alzheimer's disease."

        Still, lead researcher Agnes Flöel, M.D., assistant professor of neurology at the University of Munster, stated that "it is difficult to tease out whether the cognitive and memory improvements were a result of weight loss," HealthDay (1/26, Colwell) added. The team is now planning "additional studies trying to replicate their results in a larger population. Future study will also look at the correlation between calorie restriction and changes detected by MRI in the hippocampus and prefrontal cortex areas of the brain." WebMD (1/26, Stacy), the Massachusetts Institute of Technology's Technology Review (1/26, Humphries), and the U.K.'s Telegraph (1/27, Devlin) also covered the story.

 

 

Karen L. Herbst, Ph.D., M.D.

Assistant Professor of Medicine

Associate Program Director, Endocrinology, UCSD

3350 La Jolla Village Drive (Mailcode 9-111-G)

San Diego , California , 92161

858-552-8585 x7384

FAX 858-642-6242

 

 

Study links cutting calories to improvements in memory.

ABC World News (1/26, story 15, 1:45, Gibson) reported, "Some intriguing new research shows that people who go on a rigid diet and drop some pounds can actually improve their memory."

        The New York Times (1/27, D3, Belluck) adds that "eating fewer calories may lead to better memory," according to a study appearing in the January 26 edition of The Proceedings of the National Academy of Sciences. The work, "involving 50 men and women ages 50 to 72 who ranged from normal weight to overweight," may "be the first to link calorie-restricted diets with improved memory in people." For the study, a third of the subjects cut their calorie intake by 30 percent, and another third kept their calories consistent but "were instructed to increase the unsaturated fat (healthy fat) they ate by 20 percent." Meanwhile, "a third group made no dietary changes." After conducting "tests involving memorizing words," the researchers found that "the calorie-restricted group averaged 20 percent improvement in memory performance. The other groups showed no significant change."

        According to CNN (1/27, Harding), subjects "who cut calories became more sensitive to the blood sugar-regulating hormone insulin and had a drop in the inflammation-associated molecule C-reactive protein." Past evidence has linked these "factors...to an improvement in brain function." Experts suggest that "increased inflammation and a drop in insulin sensitivity (which is known as insulin resistance) may help explain why obesity and type 2 diabetes have been linked to worse mental performance and a greater risk of Alzheimer's disease."

        Still, lead researcher Agnes Flöel, M.D., assistant professor of neurology at the University of Munster, stated that "it is difficult to tease out whether the cognitive and memory improvements were a result of weight loss," HealthDay (1/26, Colwell) added. The team is now planning "additional studies trying to replicate their results in a larger population. Future study will also look at the correlation between calorie restriction and changes detected by MRI in the hippocampus and prefrontal cortex areas of the brain." WebMD (1/26, Stacy), the Massachusetts Institute of Technology's Technology Review (1/26, Humphries), and the U.K.'s Telegraph (1/27, Devlin) also covered the story.

 

 

Karen L. Herbst, Ph.D., M.D.

Assistant Professor of Medicine

Associate Program Director, Endocrinology, UCSD

3350 La Jolla Village Drive (Mailcode 9-111-G)

San Diego, California, 92161

858-552-8585 x7384

FAX 858-642-6242

 


#27215 From: Sherry Fox <shefox908@...>
Date: Tue Jan 27, 2009 5:52 pm
Subject: Re: Beating DD by staying positive. Facilitating Change
shefox908
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Dear veronica,
 
It seems like you are taking a hell of a bashing in regards to your positive outlook and your description of your Dercums not being like the rest of ours--I believe. If you wrer dx'd with DD, then I do believe you have it. When you tell us that your DD seem's to be in some type of remission for some lengthly time now, I believe you. It pisses me off , but it is what it is. I would like to tell you thet you do not piss me off and that I am very glad for you and I hope that you stay in "renmmission" for as long as possible.
 
Actually I think that it is a very good thing fore DR K to know that "some" people can go into remmission like you, while others simply go down, down, down. To me it seems like Dr K would really want to study you the most to see what it is about you genically or otherwise that DD is not as destructive as it usually is. I know that you are a positive person, And that is great, but I,ve studied human genetics and believe that your genitic makeup is allowing your DD to not ravish you. Plesse try to understand those of us who might have a hard time wondering why they are not like you--I must admit that I am one of them.
 
Veronica, I recently went to the Human Society in my area which was bombarded due to the new arrival of  40 plus cats that were swiftly removed from an old lady's home in Akron when neighbors called the authorities about the stench. She told the press and the authrities that she was only taking in stray cats to feed and shelter them but they kept on breeding and she had no money to have them fixed. So the media was pleading to the public to go there and adopt a cat as the facility was way, way, over it's capicity since prior to the arrival of the 40 something cats new kittens, they were already over their animal capicity. So I went there and adopted one young male and two kittens--one male, one female. Well they all ended up having the same contagious disease which is common with cats and the is the herpes virus. I have had all three in the vets office two of them more than oncefor the same thing herpes. With cats the herpes virus is a respitory ailment,it's not like herpes in humans. Well from the very beginning, the vet told me that he wa most concerned about the female kitten the most. The oldest cat maybe 1 yr, I guess is in remission. The two younger kittens are the sickest, though the male kitten is far better from the female. It looks like I may loose the female, which sadens me very, very much. My point here is that we are all different, and we are all being diminished by this DD differently than others.
 
Veronica, I hope that all of the negativity you have received lately does not stress you to the point where you might come out of this remission. Take advatage lady because you never know when this ugly beast may greet you one morning when it's making it's rounds.
 
Take Care,
 
Sherry

veronica bojerski <veronika117@...> wrote:
I work with my counseling client's to assist them in facilitating their own change and healing. In order to heal it is imperative for an individual to believe that change is possible. I hope that the following may be helpful to you.
 
I believe that the ingredients to a successful process of CHANGE are : stepping out of my comfort zone...realizing that the risk to not making changes is greater than the risk of changing...utilizing goals to inspire me to keep moving forward in any area...being creative...having dedication...my faith...new attitudes and new habits towards skills and knowledge required...independance...willingness to be different/alone...focusing on positives/imagining what I want...consciously liking and respecting myself...recognizing that mistakes are stepping stones to achievement...remembering that life is a journey to be embraced one day at a time...

Veronica





To: Dercums_Disease@yahoogroups.com
From: yankeestovall@aol.com
Date: Sat, 24 Jan 2009 12:10:43 -0500
Subject: Re: [Dercums_Disease] Re: Beating DD by staying positive? No....

Amen, Judi and Will!
 
In a message dated 1/23/2009 11:46:04 Eastern Standard Time, nonny46@yahoo.com writes:
VERY well said, Will! I'm all for being positive, as you know by now,
but all the positivity in the world will not change the cold hard
facts, that I have Dercum's, and (at this point in time) there is no
cure. OK, so I live with it and try not to become buried by it. True,
there are documented "miracles" where people have been healed of
diseases, but as my faith isn't quite up to that, I'll be happy
muddling along with my brothers and sisters here until something comes
along!

Judi




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#27214 From: veronica bojerski <veronika117@...>
Date: Tue Jan 27, 2009 4:43 pm
Subject: Beating DD by staying positive. Facilitating Change/Please read Christine and Dr. Herbst/An article
vbojerski
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I have included a link to a website about the cure for Polio.  I think that it is an AMAZING story of science and the human condition. It mirrors some of my thoughts and feelings, but in a way that is much more extensive than I can write here.
 
  http://www.cloudnet.com/~edrbsass/poliohistory.htm


Veronica






To: dercums_disease@yahoogroups.com; marciad@...; waksmf@...
From: veronika117@...
Date: Tue, 27 Jan 2009 11:31:12 -0500
Subject: RE: [Dercums_Disease] Re: Beating DD by staying positive. Facilitating Change/Please read Christine

My encouragement for others has been misinterpretated by a few or I did not convey my thoughts in a readable manner...  I was sharing some of my journaling.
Here I am talking about emotional well being and keeping our minds and hearts open for positive energy and healing to occur in a physical way...
 
I am ONLY referring to hope.  I have the utmost feelings of empathy for being given this "life sentence".  I am sorry that your life and daily activities has been taken from you.  I am sorry that there is no cure and there is no remission. I do believe that this may change in the future and that EACH person with DD may manifest their symptoms and course of illness differently from another person. 
 
Please forgive me if any way that I conveyed SIMPLE.  I am "simply" attempting to offer another side of the coin because it is what I look for and have looked for and know that what others are looking for when feeling despondent. Writing in this manner (such as in an email) leaves some things lost.
 
I do not want you or anyone to have to HAVE to feel hopeless and overwhelmed.
I know that some days it is or seems impossible. I know all too well about the loss of hope and ultimately the loss of life or life as we had known it to be.   I only share my thoughts with the best of intentions.


 

Veronica





> To: Dercums_Disease@yahoogroups.com
> From: placidcharmer@...
> Date: Tue, 27 Jan 2009 04:11:12 +0000
> Subject: [Dercums_Disease] Re: Beating DD by staying positive. Facilitating Change
>
> Veronica,
> I am glad you can do all those amazing things that you say that you
> have done. I think we are very emotional about this because of all
> the ignorant health care workers that have dismissed us as you seem
> to be doing. Understand Dercum's is a life changing "sentence". It
> doesn't do away, it doesn't go into remission, it overwhelms us. I
> would love to imagine a day that I could play with my children or go
> hiking that I used to enjoy. I would love to go catch a game of
> tennis after I got off of work like I used to...or play a couple
> games of raquetball. Those were the days! Let me introduce you to
> Dercum's disease. Imagine a place if you wish where you CAN'T
> exercise. YOU CAN'T go shopping or for long walks. YOU CAN'T go run
> around and keep up with your friends like you used to. Holding down
> a job takes everything out of you that you if you can sit in a chair
> you are constantly moving around like a fish out of water from the
> lump pain on your rear.
> Thinking positive helps to a certain extent, but there comes a time
> when it just won't pick you up. Like when your legs have no strength
> and you have absolutely no control or when you just can't think
> because of the brain fog. I would be happy sometimes to be able to
> think a negative answer through to completion.
> The problem with your statement when it comes to DERCUM'S DISEASE is
> that it just has no relevance here. I am sure that if it was that
> simple I would certainly take my life back. Actually, I would demand
> it. I wouldn't have had to give up my friends since I couldn't keep
> up with them. OH the joy just that would have given me.
>
> Christine
> --- In Dercums_Disease@yahoogroups.com, veronica bojerski
> <veronika117@...> wrote:
> >
> >
> > I work with my counseling client's to assist them in facilitating
> their own change and healing. In order to heal it is imperative for
> an individual to believe that change is possible. I hope that the
> following may be helpful to you.
> >
> > I believe that the ingredients to a successful process of CHANGE
> are : stepping out of my comfort zone...realizing that the risk to
> not making changes is greater than the risk of changing...utilizing
> goals to inspire me to keep moving forward in any area...being
> creative...having dedication...my faith...new attitudes and new
> habits towards skills and knowledge
> required...independance...willingness to be
> different/alone...focusing on positives/imagining what I
> want...consciously liking and respecting myself...recognizing that
> mistakes are stepping stones to achievement...remembering that life
> is a journey to be embraced one day at a time...
> >
> > Veronica
> >
> > To: Dercums_Disease@...: yankeestovall@...: Sat, 24 Jan 2009
> 12:10:43 -0500Subject: Re: [Dercums_Disease] Re: Beating DD by
> staying positive? No....
> > Amen, Judi and Will!
> >
> >
> > In a message dated 1/23/2009 11:46:04 Eastern Standard Time,
> nonny46@... writes:
> >
> >
> >
> >
> > VERY well said, Will! I'm all for being positive, as you know by
> now, but all the positivity in the world will not change the cold
> hard facts, that I have Dercum's, and (at this point in time) there
> is no cure. OK, so I live with it and try not to become buried by it.
> True, there are documented "miracles" where people have been healed
> of diseases, but as my faith isn't quite up to that, I'll be happy
> muddling along with my brothers and sisters here until something
> comes along!Judi
> >
> > A Good Credit Score is 700 or Above. See yours in just 2 easy steps!
> >
> > _________________________________________________________________
> > Windows Live™ Hotmail®…more than just e-mail.
> > http://windowslive.com/howitworks?
> ocid=TXT_TAGLM_WL_t2_hm_justgotbetter_howitworks_012009
> >
>
>
>
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