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#28531 From: Suzi More <suzimore92@...>
Date: Wed Jul 1, 2009 8:57 am
Subject: Re: Help! Need paineven though I ser management info
suzisblue
Offline Offline
Send Email Send Email
 
I have been spending one half hour to an hour at a time in the hot tub outside and the heat is at 100 or 101, U set it to 104 but it never stays that hot. I do this a few times a day. It seems to relax the body enough that I do not have to take as much pain killers. I have been doing this since my boyfriend bought it for me a week and a half ago.Sometimes I go in two or three times a day. The huttob is called a bubble spa and cost 499.00 plus shipping and tax brought it to 555.00 from Walmart.online. It only uses chlorine and has a little filter but the little jets do a great job. I do lidoderm patches, oxycontin, neurontin, voltaren gel etc. I find the detoxing has really helped with the juices and the lovaza and this summer I will spend trying to figure out which food, juice, pharmaceutical or neutraceutical should be taken with which and when it should be taken because I had some problems this year.

SUZI

--- On Tue, 6/30/09, ffloral28 <ffloral28@...> wrote:

From: ffloral28 <ffloral28@...>
Subject: [Dercums_Disease] Help! Need pain management info
To: Dercums_Disease@yahoogroups.com
Date: Tuesday, June 30, 2009, 7:32 PM

Hi,
I've had dercum' disease for years but didn't know it was dercum's until 2005. There is hardly a place on my body that is not full of lipomas. I did have a wonderful family doctor who treated me for pain with lidocaine patches and oxycodone. He even called Dr. Herbst to talk to her about it. Well, he moved out of state last year about 6 mos. after I was diagnosed with stage 3 colon cancer. My new dr. was not comfortable prescribing the pain meds so he referred me to a pain clinic. The Dr. there had never heard of dd and basically wouldn't listen, questioned the diagnosis and told me I had fibromyalgia. He continued my oxycodone but prescribed a smaller amt. per month and added neurotin. He also said he wanted me off the prednisone I was on (10mg daily)

The first several days I was on neurotin the pain was better and I only had to take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe this new drug would really help - but then the pain got worse again and now I can hardly walk, fatigue has increased, etc. I really wanted to find out about lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who won't even recognize the disease that is causing the pain?

I NEED ADVICE PLEASE! My granddaughters will be coming next week to see me and I can hardly move or function. I don't know how long of a future i've got because of the colon cancer or how many more times I will get to see them. I wish I could go back on the prednisone for when my granddaughters are here so I can get some energy and pain relief.

I'm trying to find a new pain dr. How can I find the right one? I feel so sad and depressed.

What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc?

Any help would be greatly appreciated. I live just south of Cocoa Beach, FL which is about 1 hr from Orlando in case anyone in this area of Florida knows any drs.

Thanks so much and God bless each one of you!
Debra



#28530 From: "Calle_Kitten" <calle_kitten@...>
Date: Wed Jul 1, 2009 3:02 am
Subject: Re: Re: Help! Need pain management info 2
calle_kitten
Offline Offline
Send Email Send Email
 
Elaine, I got it too :)
Calle
----- Original Message -----
Sent: Tuesday, June 30, 2009 7:04 PM
Subject: Re: Re: [Dercums_Disease] Help! Need pain management info 2

Elaine, I got it.
Pamela


From: "echittick@verizon.net" <echittick@verizon.net>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, June 30, 2009 6:44:00 PM
Subject: Re: Re: [Dercums_Disease] Help! Need pain management info 2

I have not had any acknowledgement for my emails or replies if you get these please reply back so I know my emails are getting through




#28529 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jul 1, 2009 2:04 am
Subject: Re: Re: Help! Need pain management info 2
ozziespamela
Offline Offline
Send Email Send Email
 
Elaine, I got it.
Pamela


From: "echittick@..." <echittick@...>
To: Dercums_Disease@yahoogroups.com
Sent: Tuesday, June 30, 2009 6:44:00 PM
Subject: Re: Re: [Dercums_Disease] Help! Need pain management info 2

I have not had any acknowledgement for my emails or replies if you get these please reply back so I know my emails are getting through




#28528 From: Pamela Harrison <ozziespamela@...>
Date: Wed Jul 1, 2009 2:02 am
Subject: Re: Re: Blood Type Diet
ozziespamela
Offline Offline
Send Email Send Email
 
Kim,
My allergies went from very mild to out of control during my 20s. I had no idea I had food allergies until I wound up in the hospital with ulcerative colitis and it was traced back to them. You might want to try eliminating all of the night shades from your diet and see how you feel. Take a month off all of them and then try adding one back in at a time and wait for a reaction. Some food allergies will go for your gut and others will make your skin break out, either in hives (right away) or in pimples or carbuncles the next day. You may also get a headache or just feel unwell. (If you have a life threatening allergy to any food chances are you already know about it.)
. The nightshades are Tomatoes, Potatoes, Bell Peppers, Rutabaga, Eggplant and Tobacco. Just FYI.
Pamela




#28527 From: echittick@...
Date: Tue Jun 30, 2009 11:44 pm
Subject: Re: Re: Help! Need pain management info 2
elaine.chittick
Offline Offline
Send Email Send Email
 
I have not had any acknowledgement for my emails or replies if you get these please reply back so I know my emails are getting through


Jun 30, 2009 04:28:33 PM, Dercums_Disease@yahoogroups.com wrote:


Debra
 
Hello  I am curious how you even knew you had a problem with your colon?  I am 37 and definitely have been diagnosed with an elongated colon  when I was 8 which I think causes some of our issues or may later. http://emedicine.medscape.com/article/1093486-overviewHave you ever looked into a disease called Gardners syndrome?  It has the lipomas and colon type tumors.  I was initially examined for this. Secondly I take 40mg of Oxycontin up to 8 daily which includes enough for breakthrough pain and 100mg of Lyrica 3 X's a day.  This combo has really helped me tremendously. Lateley I have only needed 4 or 5. I too had the run around with pain doctors myself until I ended up at Mayo Clinic in Mn.  I know Mayo has a branch in Jacksonville.Florida and Arizona.  Additionally you could ask to be refereed to a teaching hospital such as a university.  I was also seen at Indiana university med center.  I would ask Dr. H if she can refer you to a colleague that deals with pain perhaps she has a friend or knows someone who knows someone in the pain field that will listen to her.  Hope I helped a little.

--- On Tue, 6/30/09, ffloral28 <
ffloral28@...> wrote:

From: ffloral28 <ffloral28@...>
Subject: [Dercums_Disease] Help! Need pain management info
To: Dercums_Disease@yahoogroups.com
Date: Tuesday, June 30, 2009, 3:32 PM

Hi,
I've had dercum' disease for years but didn't know it was dercum's until 2005. There is hardly a place on my body that is not full of lipomas. I did have a wonderful family doctor who treated me for pain with lidocaine patches and oxycodone. He even called Dr. Herbst to talk to her about it. Well, he moved out of state last year about 6 mos. after I was diagnosed with stage 3 colon cancer. My new dr. was not comfortable prescribing the pain meds so he referred me to a pain clinic. The Dr. there had never heard of dd and basically wouldn't listen, questioned the diagnosis and told me I had fibromyalgia. He continued my oxycodone but prescribed a smaller amt. per month and added neurotin. He also said he wanted me off the prednisone I was on (10mg daily)

The first several days I was on neurotin the pain was better and I only had to take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe this new drug would really help - but then the pain got worse again and now I can hardly walk, fatigue has increased, etc. I really wanted to find out about lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who won't even recognize the disease that is causing the pain?

I NEED ADVICE PLEASE! My granddaughters will be coming next week to see me and I can hardly move or function. I don't know how long of a future i've got because of the colon cancer or how many more times I will get to see them. I wish I could go back on the prednisone for when my granddaughters are here so I can get some energy and pain relief.

I'm trying to find a new pain dr. How can I find the right one? I feel so sad and depressed.

What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc?

Any help would be greatly appreciated. I live just south of Cocoa Beach, FL which is about 1 hr from Orlando in case anyone in this area of Florida knows any drs.

Thanks so much and God bless each one of you!
Debra



#28526 From: "hazelcat1970" <hazelcat1970@...>
Date: Tue Jun 30, 2009 11:28 pm
Subject: Re: Blood Type Diet
hazelcat1970
Offline Offline
Send Email Send Email
 
Pamela,

That makes sense. Maybe it's not just the wheat in the pizza, but the sauce. I
too am highly allergic to tobacco. If I even smell cigarette smoke, my nose
stuffs up immediately. If I have to breath it for any amount of time, my sinuses
completely stuff up and I feel like I can't breath as well.

One time I was outside Barnse & Noble, waiting for a ride, and I wanted to sit
down. Every bench, there were about four in strategic locations, had a smoker
sitting on it. It was a nightmare, going from bench to bench and having to back
away or pass by the smoke holding my breath.

I was a allergic to tobacco smoke long before any of my other conditions showed
up. I just didn't know it. I wonder how many other things were there before, and
I just didn't know.

Then I start to wonder how long I've actually had this immunity problem. I have
a feeling it was a long time before I knew about it.



--- In Dercums_Disease@yahoogroups.com, Pamela Harrison <ozziespamela@...>
wrote:
>
> "I love potatoes, and now I can hardly eat them. I have other problems with
potatoes."
>
>
>
> ________________________________
> Kim,
>
> Just wanted to mention something about sensitivity to potatoes. I am allergic
to bell peppers and a holistic doctor once told me that is you are allergic or
sensitive to one nightshade vegetable, you will have a problem with ALL of the
nightshades. The nightshades are Tomatoes, Potatoes, Bell Peppers, Rutabaga,
Eggplant and Tobacco. Just FYI.
>
>
> In my case, Bell Peppers and Eggplant make me deathly sick even in small
amounts, while tomatoes just break my skin out. Potatoes upset my stomach if I
eat too much of them or too often. Tobacco was killing me rapidly before I quit
smoking.  Not sre about rutabaga! I haven't eaten any since childhood and I
don't care to risk it now.
>
> Hugs and spoons,
> Pamela
>

#28525 From: Rodney Bingham <nomadeclipse@...>
Date: Tue Jun 30, 2009 9:27 pm
Subject: Re: Help! Need pain management info 2
nomadeclipse
Offline Offline
Send Email Send Email
 
Debra
 
Hello  I am curious how you even knew you had a problem with your colon?  I am 37 and definitely have been diagnosed with an elongated colon  when I was 8 which I think causes some of our issues or may later. http://emedicine.medscape.com/article/1093486-overviewHave you ever looked into a disease called Gardners syndrome?  It has the lipomas and colon type tumors.  I was initially examined for this. Secondly I take 40mg of Oxycontin up to 8 daily which includes enough for breakthrough pain and 100mg of Lyrica 3 X's a day.  This combo has really helped me tremendously. Lateley I have only needed 4 or 5. I too had the run around with pain doctors myself until I ended up at Mayo Clinic in Mn.  I know Mayo has a branch in Jacksonville.Florida and Arizona.  Additionally you could ask to be refereed to a teaching hospital such as a university.  I was also seen at Indiana university med center.  I would ask Dr. H if she can refer you to a colleague that deals with pain perhaps she has a friend or knows someone who knows someone in the pain field that will listen to her.  Hope I helped a little.

--- On Tue, 6/30/09, ffloral28 <ffloral28@...> wrote:

From: ffloral28 <ffloral28@...>
Subject: [Dercums_Disease] Help! Need pain management info
To: Dercums_Disease@yahoogroups.com
Date: Tuesday, June 30, 2009, 3:32 PM

Hi,
I've had dercum' disease for years but didn't know it was dercum's until 2005. There is hardly a place on my body that is not full of lipomas. I did have a wonderful family doctor who treated me for pain with lidocaine patches and oxycodone. He even called Dr. Herbst to talk to her about it. Well, he moved out of state last year about 6 mos. after I was diagnosed with stage 3 colon cancer. My new dr. was not comfortable prescribing the pain meds so he referred me to a pain clinic. The Dr. there had never heard of dd and basically wouldn't listen, questioned the diagnosis and told me I had fibromyalgia. He continued my oxycodone but prescribed a smaller amt. per month and added neurotin. He also said he wanted me off the prednisone I was on (10mg daily)

The first several days I was on neurotin the pain was better and I only had to take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe this new drug would really help - but then the pain got worse again and now I can hardly walk, fatigue has increased, etc. I really wanted to find out about lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who won't even recognize the disease that is causing the pain?

I NEED ADVICE PLEASE! My granddaughters will be coming next week to see me and I can hardly move or function. I don't know how long of a future i've got because of the colon cancer or how many more times I will get to see them. I wish I could go back on the prednisone for when my granddaughters are here so I can get some energy and pain relief.

I'm trying to find a new pain dr. How can I find the right one? I feel so sad and depressed.

What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc?

Any help would be greatly appreciated. I live just south of Cocoa Beach, FL which is about 1 hr from Orlando in case anyone in this area of Florida knows any drs.

Thanks so much and God bless each one of you!
Debra



#28524 From: "ffloral28" <ffloral28@...>
Date: Tue Jun 30, 2009 7:32 pm
Subject: Help! Need pain management info
ffloral28
Online Now Online Now
Send Email Send Email
 
Hi,
I've had dercum' disease for years but didn't know it was dercum's until 2005.
There is hardly a place on my body that is not full of lipomas. I did have a
wonderful family doctor who treated me for pain with lidocaine patches and
oxycodone. He even called Dr. Herbst to talk to her about it.  Well, he moved
out of state last year about 6 mos. after I was diagnosed with stage 3 colon
cancer. My new dr. was not comfortable prescribing the pain meds so he referred
me to a pain clinic.  The Dr. there had never heard of dd and basically wouldn't
listen, questioned the diagnosis and told me I had fibromyalgia.  He continued
my oxycodone but prescribed a smaller amt. per month and added neurotin. He also
said he wanted me off the prednisone I was on (10mg daily)

The first several days I was on neurotin the pain was better and I only had to
take 2 pain pills instead of the 3-4 I was taking - I was so excited that maybe
this new drug would really help - but then the pain got worse again and now I
can hardly walk, fatigue has increased, etc.  I really wanted to find out about
lidocaine IV's, mexitel or liposuction. I wanted a Dr. who would help me with
the dd and not be arrogant and refuse to listen. Who wants to see a pain dr. who
won't even recognize the disease that is causing the pain?

I NEED ADVICE PLEASE!  My granddaughters will be coming next week to see me and
I can hardly move or function.  I don't know how long of a future i've got
because of the colon cancer or how many more times I will get to see them.  I
wish I could go back on the prednisone for when my granddaughters are here so I
can get some energy and pain relief.

I'm trying to find a new pain dr. How can I find the right one? I feel so sad
and depressed.

What is your advice on prednisone, narcotic pain meds, lidocaine iv's etc?

Any help would be greatly appreciated.  I live just south of Cocoa Beach, FL
which is about 1 hr from Orlando in case anyone in this area of Florida knows
any drs.

Thanks so much and God bless each one of you!
Debra

#28523 From: Pamela Harrison <ozziespamela@...>
Date: Tue Jun 30, 2009 2:39 pm
Subject: Re: Re: Blood Type Diet
ozziespamela
Offline Offline
Send Email Send Email
 
"I love potatoes, and now I can hardly eat them. I have other problems with potatoes."


Kim,

Just wanted to mention something about sensitivity to potatoes. I am allergic to bell peppers and a holistic doctor once told me that is you are allergic or sensitive to one nightshade vegetable, you will have a problem with ALL of the nightshades. The nightshades are Tomatoes, Potatoes, Bell Peppers, Rutabaga, Eggplant and Tobacco. Just FYI.


In my case, Bell Peppers and Eggplant make me deathly sick even in small amounts, while tomatoes just break my skin out. Potatoes upset my stomach if I eat too much of them or too often. Tobacco was killing me rapidly before I quit smoking.  Not sre about rutabaga! I haven't eaten any since childhood and I don't care to risk it now.

Hugs and spoons,
Pamela


#28522 From: "hazelcat1970" <hazelcat1970@...>
Date: Tue Jun 30, 2009 8:21 am
Subject: Re: Blood Type Diet
hazelcat1970
Offline Offline
Send Email Send Email
 
Suzi,

I'm sorry to hear that, but I know what you mean. That happens to me with
certain foods too. Especially things with wheat base, like pizza. I feel really
icky in my stomach for days after eating pizza sometimes.

I'm just starting with some of this stuff though. I have sinus allergies all
year now, and a lot more foods are getting to me. I used to be able to eat
everything and I was never allergic to anything. *SIGH*

I love potatoes, and now I can hardly eat them. I have other problems with
potatoes.

Since starting the blood type diet though, even with the red meat, I've gotten
rid of a lot of my stomach problems. I used to get terrible acid reflux. I've
practically eliminated that. I also had some kind of irritable bowel thing going
on. Now I only get that when I cheat and eat potatoes, which I do now and then
because I just love them way too much to give them up completely.

Kim

--- In Dercums_Disease@yahoogroups.com, Suzi More <suzimore92@...> wrote:
>
> I get sick as ever when I eat the red meat now. If I ever cheat again it will
be
> for something grand because I pay for at least two days with stomach pain now.
> Suzi
>
>
>
>
> ________________________________
> From: hazelcat1970 <hazelcat1970@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Saturday, June 27, 2009 5:47:36 PM
> Subject: [Dercums_Disease] Re: Blood Type Diet
>
>
>
>
>
> Karen,
>
> I prefer the New York steak. Since it's so expensive, that could really keep
me from eating a lot of it.. I feel really good after eating steak. I feel full
and healthy most of the time. My stomach has felt a little different the last
couple of times though. My stomach gets like that with corn or potatoes. I don't
eat pork at all.
>
> I agree though. A good steak now and then is essencial. Good for the taste
buds. lol
>
> Kim
>
> --- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@ ..>
wrote:
> >
> >
> >
> > "On the diet it says I can eat red meat, but on the Dercums diet, it says
not beef.
> >
> > I'm gonna have to find a happy medium. What do you think?"
> >
> > Hi Kim,
> >
> > I actually feel bad after eating red meat. Now, I don't eat red meat that
often so maybe my body has gotten used to not having it. But, when I eat a good
steak my stomach bloats, I have get painful gas. So I try to stay away but oh
man...you gotta have a good steak once in a while and I choose the Filet
Mignone' (sp?)
> >
> > That's just my two cents...lol
> >
> > Karen K...
> >
> >
> > Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
> >
> >
> >
> >
> >
> >
> > To: Dercums_Disease@ yahoogroups. com
> > From: hazelcat1970@ ...
> > Date: Tue, 23 Jun 2009 19:37:59 +0000
> > Subject: [Dercums_Disease] Re: Blood Type Diet
> >
> >
> >
> >
> >
> >
> >
> > Bonnie,
> >
> > This summer I'm cutting out almost everything. I'm eating spelt tortillas
and hummus every morning. I don't eat much. I may be losing weight. I'm not sure
yet. I was more worried about getting healthy than losing weight when I started,
but now I think I need both. If you're a type O, cutting a lot of carbs is a
very good thing. It seems like Type O is meat and veggies. On the diet it says I
can eat red meat, but on the Dercums diet, it says not beef. I'm gonna have to
find a happy medium. What do you think?
> >
> > How has cutting carbs worked for you so far?
> >
> > Kim
> >
> > --- In Dercums_Disease@ yahoogroups. com, Bonnie Williams <bonnie4340@ >
wrote:
> > >
> > > i found by cutting carbs i can lose weight but i am diabetic so i still
need carbs.bonnie
> > >
> > > --- On Sun, 6/21/09, Pamela Harrison <ozziespamela@ > wrote:
> > >
> > >
> > > From: Pamela Harrison <ozziespamela@ >
> > > Subject: Re: [Dercums_Disease] Blood Type Diet
> > > To: Dercums_Disease@ yahoogroups. com
> > > Date: Sunday, June 21, 2009, 12:42 PM
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > >
> > > "Could anyone tell me how to find out about the diet for Dercums sufferers
to lose weight? "
> > >
> > > Kim,
> > > Just go to www.lipomadoc. org and click on recommendations.
> > > Pamela
> > >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > ____________ _________ _________ _________ _________ _________ _
> > Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it
now.
> > http://www.bing. com/search? q=restaurants& form=MLOGEN& publ=WLHMTAG&
crea=TEXT_ MLOGEN_Core_ tagline_local_ 1x1
> >
>

#28521 From: Karen Krzeminski <kamperk06@...>
Date: Tue Jun 30, 2009 1:24 am
Subject: RE: !!!!
aqua12062
Offline Offline
Send Email Send Email
 
Not sure where that is? I'm from Cleveland area. Orrville, Oh, home of Smuckers Jelly! lol...

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



 

To: Dercums_Disease@yahoogroups.com
From: nomadeclipse@...
Date: Mon, 29 Jun 2009 03:27:10 -0700
Subject: RE: [Dercums_Disease] !!!!



 
karen
 
My brother lives in Fairborn,OH.

--- On Sun, 6/28/09, Karen Krzeminski <kamperk06@hotmail.com> wrote:

From: Karen Krzeminski <kamperk06@hotmail.com>
Subject: RE: [Dercums_Disease] !!!!
To: "My Group" <dercums_disease@yahoogroups.com>
Date: Sunday, June 28, 2009, 6:39 PM

No humidity here. We moved her from Ohio and been here for a year but getting really homesick for my kids and my family so checking into moving back.

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Sat, 27 Jun 2009 18:36:36 -0700
Subject: RE: [Dercums_Disease] !!!!



Karen
 
Im in Bloomington, In It was around 90.  I love the heat but hate the humidity.

--- On Wed, 6/24/09, Karen Krzeminski <kamperk06@hotmail. com> wrote:

From: Karen Krzeminski <kamperk06@hotmail. com>
Subject: RE: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!
To: "My Group" <dercums_disease@ yahoogroups. com>
Date: Wednesday, June 24, 2009, 11:30 PM

Where are you Rod? I'm in AZ and it's 109 today. 111 forecasted for Sat. LOL...Wanted to tell you, yes, I have problems.
If I didn't keeep my back legs and calves a good stretch exersize daily. Right at my desk...I just stay stretched and it it seems to HELP,
but you know, nothing is taking away the pain.!
 
Karen LHC, AZ 109

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Wed, 24 Jun 2009 19:47:39 -0700
Subject: Re: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!



Hello
 
I have to give another 2 cents.  I am one of the people that has had a steroid injection directly into a large tumor near my kidney.  It was done at the Mayo Clinic.  I did indeed get some relief because it shrank the tumor to a less painful state.  However it has started to grow again after 4 years.  I think the 4 year break was worth it..  I do not know what kind of steroid it was but I did not have the normal adverse reaction like I did when I too had several prednisone mederol packs.  So perhaps the problem lies with either the type of steroid or the delivery method.  I do have a question about another topic.  Lately I have been having great  difficulty with standing up from a car seat or couch.  I know I have several tumors growing along the tendons and muscles behind my thighs and knees is this happening to anyone else and what have you done.  Also I have been experiencing great fatigue and weakness in general. It has been difficult to even walk any significant distance for the last few weeks. Is it the weather?
 
Rod

--- On Tue, 6/23/09, Will I -Am <waksmf@...> wrote:

From: Will I -Am <waksmf@...>
Subject: [Dercums_Disease] steroid injections to shrink
To: Dercums_Disease@ yahoogroups. com
Date: Tuesday, June 23, 2009, 3:05 PM

>>>> I just read where steroid injections can shrink the tumors but not totally eliminate it, but I was wondering has anyone had this done? bonnie

Howdy all, I have read the other responses to this e-mail and have to agree with those cautioning against steroids.  Before they realized that my shifting thoracic discs were caused by the tumors in my paraspinal muscles, the put me on the M-Pack (Medrol, Prednisone).  I ran the course with that stuff twice and it did not do my body good.  Anecdotal evidence from the group points to a negative effect on the DD – as in it’s bad for us and has been known to trigger some pretty bad flares.  I would follow the recommendations of our good Doc, and be sure to let your personal doctors know about her recommended precautions.  If they are resistant, maybe they should review some of the literature, although I am not sure how much is out there about steroid use and interactions with DD (or AD – Adiposis dolorosa, take your pick).


 




Bing™ brings you maps, menus, and reviews organized in one place. Try it now.



Lauren found her dream laptop. Find the PC that’s right for you.



Lauren found her dream laptop. Find the PC that’s right for you.

#28520 From: Rodney Bingham <nomadeclipse@...>
Date: Mon Jun 29, 2009 10:27 am
Subject: RE: !!!!
nomadeclipse
Offline Offline
Send Email Send Email
 
 
karen
 
My brother lives in Fairborn,OH.

--- On Sun, 6/28/09, Karen Krzeminski <kamperk06@...> wrote:

From: Karen Krzeminski <kamperk06@...>
Subject: RE: [Dercums_Disease] !!!!
To: "My Group" <dercums_disease@yahoogroups.com>
Date: Sunday, June 28, 2009, 6:39 PM

No humidity here. We moved her from Ohio and been here for a year but getting really homesick for my kids and my family so checking into moving back.

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Sat, 27 Jun 2009 18:36:36 -0700
Subject: RE: [Dercums_Disease] !!!!



Karen
 
Im in Bloomington, In It was around 90.  I love the heat but hate the humidity.

--- On Wed, 6/24/09, Karen Krzeminski <kamperk06@hotmail. com> wrote:

From: Karen Krzeminski <kamperk06@hotmail. com>
Subject: RE: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!
To: "My Group" <dercums_disease@ yahoogroups. com>
Date: Wednesday, June 24, 2009, 11:30 PM

Where are you Rod? I'm in AZ and it's 109 today. 111 forecasted for Sat. LOL...Wanted to tell you, yes, I have problems.
If I didn't keeep my back legs and calves a good stretch exersize daily. Right at my desk...I just stay stretched and it it seems to HELP,
but you know, nothing is taking away the pain.!
 
Karen LHC, AZ 109

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Wed, 24 Jun 2009 19:47:39 -0700
Subject: Re: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!



Hello
 
I have to give another 2 cents.  I am one of the people that has had a steroid injection directly into a large tumor near my kidney.  It was done at the Mayo Clinic.  I did indeed get some relief because it shrank the tumor to a less painful state.  However it has started to grow again after 4 years.  I think the 4 year break was worth it..  I do not know what kind of steroid it was but I did not have the normal adverse reaction like I did when I too had several prednisone mederol packs.  So perhaps the problem lies with either the type of steroid or the delivery method.  I do have a question about another topic.  Lately I have been having great  difficulty with standing up from a car seat or couch.  I know I have several tumors growing along the tendons and muscles behind my thighs and knees is this happening to anyone else and what have you done.  Also I have been experiencing great fatigue and weakness in general. It has been difficult to even walk any significant distance for the last few weeks. Is it the weather?
 
Rod

--- On Tue, 6/23/09, Will I -Am <waksmf@...> wrote:

From: Will I -Am <waksmf@...>
Subject: [Dercums_Disease] steroid injections to shrink
To: Dercums_Disease@ yahoogroups. com
Date: Tuesday, June 23, 2009, 3:05 PM

>>>> I just read where steroid injections can shrink the tumors but not totally eliminate it, but I was wondering has anyone had this done? bonnie

Howdy all, I have read the other responses to this e-mail and have to agree with those cautioning against steroids.  Before they realized that my shifting thoracic discs were caused by the tumors in my paraspinal muscles, the put me on the M-Pack (Medrol, Prednisone).  I ran the course with that stuff twice and it did not do my body good.  Anecdotal evidence from the group points to a negative effect on the DD – as in it’s bad for us and has been known to trigger some pretty bad flares.  I would follow the recommendations of our good Doc, and be sure to let your personal doctors know about her recommended precautions.  If they are resistant, maybe they should review some of the literature, although I am not sure how much is out there about steroid use and interactions with DD (or AD – Adiposis dolorosa, take your pick).

 




Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it now.



Lauren found her dream laptop. Find the PC that’s right for you.


#28519 From: Karen Krzeminski <kamperk06@...>
Date: Sun Jun 28, 2009 10:39 pm
Subject: RE: !!!!
aqua12062
Offline Offline
Send Email Send Email
 
No humidity here. We moved her from Ohio and been here for a year but getting really homesick for my kids and my family so checking into moving back.

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



 

To: Dercums_Disease@yahoogroups.com
From: nomadeclipse@...
Date: Sat, 27 Jun 2009 18:36:36 -0700
Subject: RE: [Dercums_Disease] !!!!



Karen
 
Im in Bloomington,In It was around 90.  I love the heat but hate the humidity.

--- On Wed, 6/24/09, Karen Krzeminski <kamperk06@hotmail.com> wrote:

From: Karen Krzeminski <kamperk06@hotmail.com>
Subject: RE: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!
To: "My Group" <dercums_disease@yahoogroups.com>
Date: Wednesday, June 24, 2009, 11:30 PM

Where are you Rod? I'm in AZ and it's 109 today. 111 forecasted for Sat. LOL...Wanted to tell you, yes, I have problems.
If I didn't keeep my back legs and calves a good stretch exersize daily. Right at my desk...I just stay stretched and it it seems to HELP,
but you know, nothing is taking away the pain.!
 
Karen LHC, AZ 109

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Wed, 24 Jun 2009 19:47:39 -0700
Subject: Re: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!



Hello
 
I have to give another 2 cents.  I am one of the people that has had a steroid injection directly into a large tumor near my kidney.  It was done at the Mayo Clinic.  I did indeed get some relief because it shrank the tumor to a less painful state.  However it has started to grow again after 4 years.  I think the 4 year break was worth it..  I do not know what kind of steroid it was but I did not have the normal adverse reaction like I did when I too had several prednisone mederol packs.  So perhaps the problem lies with either the type of steroid or the delivery method.  I do have a question about another topic.  Lately I have been having great  difficulty with standing up from a car seat or couch.  I know I have several tumors growing along the tendons and muscles behind my thighs and knees is this happening to anyone else and what have you done.  Also I have been experiencing great fatigue and weakness in general. It has been difficult to even walk any significant distance for the last few weeks. Is it the weather?
 
Rod

--- On Tue, 6/23/09, Will I -Am <waksmf@...> wrote:

From: Will I -Am <waksmf@...>
Subject: [Dercums_Disease] steroid injections to shrink
To: Dercums_Disease@ yahoogroups. com
Date: Tuesday, June 23, 2009, 3:05 PM

>>>> I just read where steroid injections can shrink the tumors but not totally eliminate it, but I was wondering has anyone had this done? bonnie

Howdy all, I have read the other responses to this e-mail and have to agree with those cautioning against steroids.  Before they realized that my shifting thoracic discs were caused by the tumors in my paraspinal muscles, the put me on the M-Pack (Medrol, Prednisone).  I ran the course with that stuff twice and it did not do my body good.  Anecdotal evidence from the group points to a negative effect on the DD – as in it’s bad for us and has been known to trigger some pretty bad flares.  I would follow the recommendations of our good Doc, and be sure to let your personal doctors know about her recommended precautions.  If they are resistant, maybe they should review some of the literature, although I am not sure how much is out there about steroid use and interactions with DD (or AD – Adiposis dolorosa, take your pick).

 




Bing™ brings you maps, menus, and reviews organized in one place. Try it now.



Lauren found her dream laptop. Find the PC that’s right for you.

#28518 From: Suzi More <suzimore92@...>
Date: Sun Jun 28, 2009 8:48 pm
Subject: Re: Re: Blood Type Diet
suzisblue
Offline Offline
Send Email Send Email
 
I get sick as ever when I eat the red meat now. If I ever cheat again it will be
for something grand because I pay for at least two days with stomach pain now.
Suzi


From: hazelcat1970 <hazelcat1970@...>
To: Dercums_Disease@yahoogroups.com
Sent: Saturday, June 27, 2009 5:47:36 PM
Subject: [Dercums_Disease] Re: Blood Type Diet

Karen,

I prefer the New York steak. Since it's so expensive, that could really keep me from eating a lot of it. I feel really good after eating steak. I feel full and healthy most of the time. My stomach has felt a little different the last couple of times though. My stomach gets like that with corn or potatoes. I don't eat pork at all.

I agree though. A good steak now and then is essencial. Good for the taste buds. lol

Kim

--- In Dercums_Disease@ yahoogroups. com, Karen Krzeminski <kamperk06@. ..> wrote:
>
>
>
> "On the diet it says I can eat red meat, but on the Dercums diet, it says not beef.
>
> I'm gonna have to find a happy medium. What do you think?"
>
> Hi Kim,
>
> I actually feel bad after eating red meat.. Now, I don't eat red meat that often so maybe my body has gotten used to not having it. But, when I eat a good steak my stomach bloats, I have get painful gas. So I try to stay away but oh man...you gotta have a good steak once in a while and I choose the Filet Mignone' (sp?)
>
> That's just my two cents...lol
>
> Karen K...
>
>
> Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc. org
>
>
>
>
>
>
> To: Dercums_Disease@ yahoogroups. com
> From: hazelcat1970@ ...
> Date: Tue, 23 Jun 2009 19:37:59 +0000
> Subject: [Dercums_Disease] Re: Blood Type Diet
>
>
>
>
>
>
>
> Bonnie,
>
> This summer I'm cutting out almost everything. I'm eating spelt tortillas and hummus every morning. I don't eat much. I may be losing weight. I'm not sure yet. I was more worried about getting healthy than losing weight when I started, but now I think I need both. If you're a type O, cutting a lot of carbs is a very good thing. It seems like Type O is meat and veggies. On the diet it says I can eat red meat, but on the Dercums diet, it says not beef. I'm gonna have to find a happy medium. What do you think?
>
> How has cutting carbs worked for you so far?
>
> Kim
>
> --- In Dercums_Disease@ yahoogroups. com, Bonnie Williams <bonnie4340@ > wrote:
> >
> > i found by cutting carbs i can lose weight but i am diabetic so i still need carbs.bonnie
> >
> > --- On Sun, 6/21/09, Pamela Harrison <ozziespamela@ > wrote:
> >
> >
> > From: Pamela Harrison <ozziespamela@ >
> > Subject: Re: [Dercums_Disease] Blood Type Diet
> > To: Dercums_Disease@ yahoogroups. com
> > Date: Sunday, June 21, 2009, 12:42 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > "Could anyone tell me how to find out about the diet for Dercums sufferers to lose weight? "
> >
> > Kim,
> > Just go to www.lipomadoc. org and click on recommendations.
> > Pamela
> >
>
>
>
>
>
>
>
>
>
> ____________ _________ _________ _________ _________ _________ _
> Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it now.
> http://www.bing. com/search? q=restaurants& form=MLOGEN& publ=WLHMTAG& crea=TEXT_ MLOGEN_Core_ tagline_local_ 1x1
>



#28517 From: Bonnie Williams <bonnie4340@...>
Date: Sun Jun 28, 2009 3:25 pm
Subject: Re: Re: Stomach bloating/swelling?s
bonnie19562003
Offline Offline
Send Email Send Email
 
rodney have you ever had a colonascopy done to check your colon?I have IBD and ulcerative colitis and when my colon swell,s i look 20 month,s preggo,it is my colon also i have a flabby apron from gaining weight.just thought i would ask,Bonnie

--- On Sat, 6/27/09, Rodney Bingham <nomadeclipse@...> wrote:

From: Rodney Bingham <nomadeclipse@...>
Subject: Re: [Dercums_Disease] Re: Stomach bloating/swelling?s
To: Dercums_Disease@yahoogroups.com
Date: Saturday, June 27, 2009, 8:18 PM

Hello
 
Prego Bello is it!  Has Dr. Herbst said anything about how to reduce it?  If not I hope she can find out.  I hate it!!!!!!!!!
 
R

--- On Sat, 6/27/09, hazelcat1970 <hazelcat1970@ yahoo.com> wrote:

From: hazelcat1970 <hazelcat1970@ yahoo.com>
Subject: [Dercums_Disease] Re: Stomach bloating/swelling? s
To: Dercums_Disease@ yahoogroups. com
Date: Saturday, June 27, 2009, 5:55 PM

Rod,

I also get the bloating with certain foods. Mine goes away a lot quicker that a couple of days. It's usually overnight when the food is out of my system. If you're talking about the pregnancy belly, I haven't found out how to get rid of that yet.

Kim

--- In Dercums_Disease@ yahoogroups. com, "nomadeclipse" <nomadeclipse@ ...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>



#28516 From: Rodney Bingham <nomadeclipse@...>
Date: Sun Jun 28, 2009 1:36 am
Subject: RE: !!!!
nomadeclipse
Offline Offline
Send Email Send Email
 
Karen
 
Im in Bloomington,In It was around 90.  I love the heat but hate the humidity.

--- On Wed, 6/24/09, Karen Krzeminski <kamperk06@...> wrote:

From: Karen Krzeminski <kamperk06@...>
Subject: RE: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!
To: "My Group" <dercums_disease@yahoogroups.com>
Date: Wednesday, June 24, 2009, 11:30 PM

Where are you Rod? I'm in AZ and it's 109 today. 111 forecasted for Sat. LOL...Wanted to tell you, yes, I have problems.
If I didn't keeep my back legs and calves a good stretch exersize daily. Right at my desk...I just stay stretched and it it seems to HELP,
but you know, nothing is taking away the pain.!
 
Karen LHC, AZ 109

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



 

To: Dercums_Disease@ yahoogroups. com
From: nomadeclipse@ yahoo.com
Date: Wed, 24 Jun 2009 19:47:39 -0700
Subject: Re: [Dercums_Disease] steroid injections to shrink 2 more cents/ Weakness in legs!!!!



Hello
 
I have to give another 2 cents.  I am one of the people that has had a steroid injection directly into a large tumor near my kidney.  It was done at the Mayo Clinic.  I did indeed get some relief because it shrank the tumor to a less painful state.  However it has started to grow again after 4 years.  I think the 4 year break was worth it..  I do not know what kind of steroid it was but I did not have the normal adverse reaction like I did when I too had several prednisone mederol packs.  So perhaps the problem lies with either the type of steroid or the delivery method.  I do have a question about another topic.  Lately I have been having great  difficulty with standing up from a car seat or couch.  I know I have several tumors growing along the tendons and muscles behind my thighs and knees is this happening to anyone else and what have you done.  Also I have been experiencing great fatigue and weakness in general. It has been difficult to even walk any significant distance for the last few weeks. Is it the weather?
 
Rod

--- On Tue, 6/23/09, Will I -Am <waksmf@...> wrote:

From: Will I -Am <waksmf@...>
Subject: [Dercums_Disease] steroid injections to shrink
To: Dercums_Disease@ yahoogroups. com
Date: Tuesday, June 23, 2009, 3:05 PM

>>>> I just read where steroid injections can shrink the tumors but not totally eliminate it, but I was wondering has anyone had this done? bonnie

Howdy all, I have read the other responses to this e-mail and have to agree with those cautioning against steroids.  Before they realized that my shifting thoracic discs were caused by the tumors in my paraspinal muscles, the put me on the M-Pack (Medrol, Prednisone).  I ran the course with that stuff twice and it did not do my body good.  Anecdotal evidence from the group points to a negative effect on the DD – as in it’s bad for us and has been known to trigger some pretty bad flares.  I would follow the recommendations of our good Doc, and be sure to let your personal doctors know about her recommended precautions.  If they are resistant, maybe they should review some of the literature, although I am not sure how much is out there about steroid use and interactions with DD (or AD – Adiposis dolorosa, take your pick).

 




Bingâ„¢ brings you maps, menus, and reviews organized in one place. Try it now.


#28515 From: Rodney Bingham <nomadeclipse@...>
Date: Sun Jun 28, 2009 1:18 am
Subject: Re: Re: Stomach bloating/swelling?s
nomadeclipse
Offline Offline
Send Email Send Email
 
Hello
 
Prego Bello is it!  Has Dr. Herbst said anything about how to reduce it?  If not I hope she can find out.  I hate it!!!!!!!!!
 
R

--- On Sat, 6/27/09, hazelcat1970 <hazelcat1970@...> wrote:

From: hazelcat1970 <hazelcat1970@...>
Subject: [Dercums_Disease] Re: Stomach bloating/swelling?s
To: Dercums_Disease@yahoogroups.com
Date: Saturday, June 27, 2009, 5:55 PM

Rod,

I also get the bloating with certain foods. Mine goes away a lot quicker that a couple of days. It's usually overnight when the food is out of my system. If you're talking about the pregnancy belly, I haven't found out how to get rid of that yet.

Kim

--- In Dercums_Disease@ yahoogroups. com, "nomadeclipse" <nomadeclipse@ ...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>



#28514 From: "hazelcat1970" <hazelcat1970@...>
Date: Sat Jun 27, 2009 9:55 pm
Subject: Re: Stomach bloating/swelling?s
hazelcat1970
Offline Offline
Send Email Send Email
 
Rod,

I also get the bloating with certain foods. Mine goes away a lot quicker that a
couple of days. It's usually overnight when the food is out of my system. If
you're talking about the pregnancy belly, I haven't found out how to get rid of
that yet.

Kim

--- In Dercums_Disease@yahoogroups.com, "nomadeclipse" <nomadeclipse@...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>

#28513 From: "hazelcat1970" <hazelcat1970@...>
Date: Sat Jun 27, 2009 9:47 pm
Subject: Re: Blood Type Diet
hazelcat1970
Offline Offline
Send Email Send Email
 
Karen,

I prefer the New York steak. Since it's so expensive, that could really keep me
from eating a lot of it. I feel really good after eating steak. I feel full and
healthy most of the time. My stomach has felt a little different the last couple
of times though. My stomach gets like that with corn or potatoes. I don't eat
pork at all.

I agree though. A good steak now and then is essencial. Good for the taste buds.
lol

Kim



--- In Dercums_Disease@yahoogroups.com, Karen Krzeminski <kamperk06@...> wrote:
>
>
>
> "On the diet it says I can eat red meat, but on the Dercums diet, it says not
beef.
>
> I'm gonna have to find a happy medium. What do you think?"
>
> Hi Kim,
>
>  I actually feel bad after eating red meat. Now, I don't eat red meat that
often so maybe my body has gotten used to not having it. But, when I eat a good
steak my stomach bloats, I have get painful gas. So I try to stay away but oh
man...you gotta have a good steak once in a while and I choose the Filet
Mignone' (sp?)
>
> That's just my two cents...lol
>
> Karen K...
>
>
>  Support research for Dercums Disease/Adiposis Dolorosa @ www.lipomadoc.org
>
>
>
>
>
>
> To: Dercums_Disease@yahoogroups.com
> From: hazelcat1970@...
> Date: Tue, 23 Jun 2009 19:37:59 +0000
> Subject: [Dercums_Disease] Re: Blood Type Diet
>
>
>
>
>
>
>
> Bonnie,
>
> This summer I'm cutting out almost everything. I'm eating spelt tortillas and
hummus every morning. I don't eat much. I may be losing weight. I'm not sure
yet. I was more worried about getting healthy than losing weight when I started,
but now I think I need both. If you're a type O, cutting a lot of carbs is a
very good thing. It seems like Type O is meat and veggies. On the diet it says I
can eat red meat, but on the Dercums diet, it says not beef. I'm gonna have to
find a happy medium. What do you think?
>
> How has cutting carbs worked for you so far?
>
> Kim
>
> --- In Dercums_Disease@yahoogroups.com, Bonnie Williams <bonnie4340@> wrote:
> >
> > i found by cutting carbs i can lose weight but i am diabetic so i still need
carbs.bonnie
> >
> > --- On Sun, 6/21/09, Pamela Harrison <ozziespamela@> wrote:
> >
> >
> > From: Pamela Harrison <ozziespamela@>
> > Subject: Re: [Dercums_Disease] Blood Type Diet
> > To: Dercums_Disease@yahoogroups.com
> > Date: Sunday, June 21, 2009, 12:42 PM
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> >
> > "Could anyone tell me how to find out about the diet for Dercums sufferers
to lose weight? "
> >
> > Kim,
> > Just go to www.lipomadoc. org and click on recommendations.
> > Pamela
> >
>
>
>
>
>
>
>
>
>
> _________________________________________________________________
> Bing™  brings you maps, menus, and reviews organized in one place.   Try it
now.
>
http://www.bing.com/search?q=restaurants&form=MLOGEN&publ=WLHMTAG&crea=TEXT_MLOG\
EN_Core_tagline_local_1x1
>

#28512 From: echittick@...
Date: Sat Jun 27, 2009 8:59 pm
Subject: Re: Stomach bloating/swelling?s
elaine.chittick
Offline Offline
Send Email Send Email
 
I had my first session with acupuncture.I will also be taken chinese medicine that will help with my numerous issues including bloating of the stomach, fatigue and numerous other problems. My pain management and rheumatologist recommended it along with the treatments and medication I am taking. I loved my first session. The room lighting was not bright but warm and relaxing. I sat in this comfortable recliner as he placed the needles or pins. I slept while soft bells rand in the backround. He had put a blanket and warm heat from lamp on my ankles It was great. i can't wait to go back. In addition to recieving treatment your stress in your body melts away. Since I have Dercum's and multiple other issues I am a complicated case but is eager to take on. I gave him an article that is easy to read that I put on my computer so I print out the Dercum's article, My Medication and my history and Physical report for there records. He is going to research Dercum's, and it regarding chinese treatment and meds. I will let you know how it goes and it will be apart of my treatment. I think it will help considerably. As my treatments progress I will let you know. Elaine


Jun 25, 2009 07:32:37 PM, Dercums_Disease@yahoogroups.com wrote:


Hello

How do you guys deal with stomach swelling/bloating?

Can you make your stomach go back down to normal?

Rod


#28511 From: "Suzann Cheney" <scheney@...>
Date: Fri Jun 26, 2009 6:31 pm
Subject: RE: problems with teeth ?
suzanncheney
Offline Offline
Send Email Send Email
 

Good for you Calle, yes it’s important that they understand the complications that can befall you with surgery.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Calle_Kitten
Sent: Friday, June 26, 2009 1:46 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] problems with teeth ?

 




No Suzann, even though I brought Dr. Karen's diagnosis paper in with me, the dentist didn't bother to read it.  But she is sending me to a specialist to have the other stuff done, and I will make sure she understands my diseases or she won't be doing anything to me !!

 

Thanks for making sure I make the next dentist totally aware.

 

Calle

 

----- Original Message -----

Sent: Friday, June 26, 2009 5:36 AM

Subject: RE: [Dercums_Disease] problems with teeth ?

 

Understandably so Calle!  I’m sorry I don’t have any experience or knowledge of either of these procedures.  They are of course aware of your DD, and if they are still proposing this surgery, I’m assuming they have taken your disease into account and are ruling in favor of the two surgeries over your DD, is this correct?  Not sure what to make of it, but if it means losing your teeth if you don’t have it done, I’d opt to do it.  Just MHO.


Take care.

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Calle_Kitten
Sent: Thursday, June 25, 2009 4:29 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] problems with teeth ?





Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

It really wasnt bad, she did it on two different days, and boy am I glad its over.

However, I have issues.

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

Hugs.


Calle









#28510 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jun 26, 2009 5:45 pm
Subject: Re: problems with teeth ?
calle_kitten
Offline Offline
Send Email Send Email
 
No Suzann, even though I brought Dr. Karen's diagnosis paper in with me, the dentist didn't bother to read it.  But she is sending me to a specialist to have the other stuff done, and I will make sure she understands my diseases or she won't be doing anything to me !!
 
Thanks for making sure I make the next dentist totally aware.
 
Calle
 
----- Original Message -----
Sent: Friday, June 26, 2009 5:36 AM
Subject: RE: [Dercums_Disease] problems with teeth ?

Understandably so Calle!  I’m sorry I don’t have any experience or knowledge of either of these procedures.  They are of course aware of your DD, and if they are still proposing this surgery, I’m assuming they have taken your disease into account and are ruling in favor of the two surgeries over your DD, is this correct?  Not sure what to make of it, but if it means losing your teeth if you don’t have it done, I’d opt to do it.  Just MHO.


Take care.

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Calle_Kitten
Sent: Thursday, June 25, 2009 4:29 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] problems with teeth ?




Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

It really wasnt bad, she did it on two different days, and boy am I glad its over.

However, I have issues.

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

Hugs.


Calle





#28509 From: Pamela Harrison <ozziespamela@...>
Date: Fri Jun 26, 2009 2:56 pm
Subject: Re: Stomach bloating/swelling?s
ozziespamela
Offline Offline
Send Email Send Email
 
Yes Rod,
It is called IBS. (Irritable bowel syndrome.) The diet helps, but it still acts up sometimes.
Hugs and spoons,
Pamela


From: nomadeclipse <nomadeclipse@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 7:32:06 PM
Subject: [Dercums_Disease] Stomach bloating/swelling?s

Hello

How do you guys deal with stomach swelling/bloating?

Can you make your stomach go back down to normal?

Rod



#28508 From: "Suzann Cheney" <scheney@...>
Date: Fri Jun 26, 2009 12:36 pm
Subject: RE: problems with teeth ?
suzanncheney
Offline Offline
Send Email Send Email
 

Understandably so Calle!  I’m sorry I don’t have any experience or knowledge of either of these procedures.  They are of course aware of your DD, and if they are still proposing this surgery, I’m assuming they have taken your disease into account and are ruling in favor of the two surgeries over your DD, is this correct?  Not sure what to make of it, but if it means losing your teeth if you don’t have it done, I’d opt to do it.  Just MHO.


Take care.

 

Suzann A. Cheney

Administrative Secretary

Graduate School/Government Relations/Provost Office

Clarkson University

PO Box 5625

Potsdam, NY 13699-5625

Tel:   (315) 268-6738

Fax:  (315) 268-7994

Web: http://www.clarkson.edu/admission/graduate

From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of Calle_Kitten
Sent: Thursday, June 25, 2009 4:29 PM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] problems with teeth ?

 




Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.

 

It really wasnt bad, she did it on two different days, and boy am I glad its over.

 

However, I have issues.

 

One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?

 

Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.

 

Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.

 

Hugs.


Calle





#28507 From: Vicki <eachdayicryevenmore@...>
Date: Fri Jun 26, 2009 8:36 am
Subject: Re: problems with teeth ?
eachdayicrye...
Offline Offline
Send Email Send Email
 
Morning Ladies!  I had tears in my eyes when I heard Farrah had passed.  But, then
Micheal Jackson too!  My goodness!  My son went crazy over that guy! I went to
one of his concerts and boy, I was happy I did.  My son and I did enjoy ourselves.
 
Anyway, Suzi thank  you for the info. My hubby also has low gums.  However, our
insurance pays for deep cleaning every 3 months.  Otherwise, his mouth would be
garbage mouth.  It's so hard to tell someone that his breathe smells awful when
you love him. Thank you Calle for setting me straight on that!
 
Check with your insurance they might also cover it too! It might save you money
and the pain!
 
Hot Tubs that would be really cool! But not outside in cold winter.
 
Hugs Vickie   


From: Calle_Kitten <calle_kitten@...>
To: Dercums_Disease@yahoogroups.com
Sent: Friday, June 26, 2009 3:23:38 AM
Subject: Re: [Dercums_Disease] problems with teeth ?

Suzi - thanks for the info.  I read somewhere today, don't remember where, that gum disease and teeth problems can be directly related to any auto-immune disease.  I think it must explain why this has progressed so quickly.
 
I will look into that vitamin. I sure would like to find a solution that does not include any kind of surgery.  I am so glad it helped you.
 
They "gave" me, well I paid 50 bucks for it, a kit to use for the next 28 days after the deep cleaning.
 
I too believe we have an appointed time that God will call us into heaven.  I am sure glad He has you here with us.  When we grieve for a fellow Christian who has gone to Heaven, I think we grieve more for ourselves, because they are certainly in a much better place !
 
How exciting you have a new hot tub.  I have one to use here in this RV park and I love it.  I hope you continue to enjoy yours.
 
Thanks again.

Calle
 
 
----- Original Message -----
From: Suzi More
Sent: Thursday, June 25, 2009 5:43 PM
Subject: Re: [Dercums_Disease] problems with teeth ?

I have a dentist who wanted to pull one of my back molars, I had continuos gum infections and hate that deep cleaning but I will go when I have to. I told the dentist to let me put it off because I was beginning a new vitamin called strovite advanced and that someone I knew had had it prescribed for gum disease, That was about three years ago and I have been taking it reigiously since then. I went back last year to the dentist and he could not find anything wrong with that tooth and it was not wobbly like before. I am not lying. I also use baking soda on an electric toothbrush as well as brushing with hyfrogen peroxide and gargling with hyfrogen peroxide. Well, I am in pain 24/7 except for the times I am in the new hot tub that Myron bought last week and the Gabapentin is helping but at least we are allive. I watched the last hours of news and see the stars like Farah and Michael Jackson falling like flies. And I am still here, I think God  wants me here.
Suzi


From: Calle_Kitten <calle_kitten@ yahoo..com>
To: Dercums_Disease@ yahoogroups. com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.
 
It really wasnt bad, she did it on two different days, and boy am I glad its over.
 
However, I have issues.
 
One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?
 
Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft..  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.
 
Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.
 
Hugs.

Calle



#28506 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jun 26, 2009 7:23 am
Subject: Re: problems with teeth ?
calle_kitten
Offline Offline
Send Email Send Email
 
Suzi - thanks for the info.  I read somewhere today, don't remember where, that gum disease and teeth problems can be directly related to any auto-immune disease.  I think it must explain why this has progressed so quickly.
 
I will look into that vitamin. I sure would like to find a solution that does not include any kind of surgery.  I am so glad it helped you.
 
They "gave" me, well I paid 50 bucks for it, a kit to use for the next 28 days after the deep cleaning.
 
I too believe we have an appointed time that God will call us into heaven.  I am sure glad He has you here with us.  When we grieve for a fellow Christian who has gone to Heaven, I think we grieve more for ourselves, because they are certainly in a much better place !
 
How exciting you have a new hot tub.  I have one to use here in this RV park and I love it.  I hope you continue to enjoy yours.
 
Thanks again.

Calle
 
 
----- Original Message -----
From: Suzi More
Sent: Thursday, June 25, 2009 5:43 PM
Subject: Re: [Dercums_Disease] problems with teeth ?

I have a dentist who wanted to pull one of my back molars, I had continuos gum infections and hate that deep cleaning but I will go when I have to. I told the dentist to let me put it off because I was beginning a new vitamin called strovite advanced and that someone I knew had had it prescribed for gum disease, That was about three years ago and I have been taking it reigiously since then. I went back last year to the dentist and he could not find anything wrong with that tooth and it was not wobbly like before. I am not lying. I also use baking soda on an electric toothbrush as well as brushing with hyfrogen peroxide and gargling with hyfrogen peroxide. Well, I am in pain 24/7 except for the times I am in the new hot tub that Myron bought last week and the Gabapentin is helping but at least we are allive. I watched the last hours of news and see the stars like Farah and Michael Jackson falling like flies. And I am still here, I think God  wants me here.
Suzi


From: Calle_Kitten <calle_kitten@yahoo..com>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.
 
It really wasnt bad, she did it on two different days, and boy am I glad its over.
 
However, I have issues.
 
One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?
 
Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft..  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.
 
Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.
 
Hugs.

Calle


#28505 From: "Calle_Kitten" <calle_kitten@...>
Date: Fri Jun 26, 2009 1:49 am
Subject: Re: problems with teeth ?
calle_kitten
Offline Offline
Send Email Send Email
 
Vicki:  Thanks for the answer.  And I don't think you are a negative person. You stay upbeat even though you are going through all this stuff.  I mean what is, is, when it comes to the stuff that is getting to us physically.
 
 
 My teeth are actually in pretty good shape.  I did have quite a few root canals done over the years, along with the crowns.
 
This thing with the deep pockets in my gums is new.   As is the bone loss on one of the tooths.  teeth ?  teefers ?? toofers ? HA !
 
I dont have pain anywhere in my mouth except where the one gum is so low.  Thats the one they already tried the gum transplant, which is connective tissue, which we already have problems with.
 
You sure got run over by your dentist and insurance company :( .  I am so sorry they did all that to you, and hope you have some success getting some of your money back.  It's so hard, these people are "trained" and so we look up to them and accept their advice, and end up getting hosed.
 
In any case, this dentist has given me a referral to another dentist, a specialist.  My insurance is good, but it pays a total of 2, 200.00 a year, and with the special cleaning, and two crowns, I probably can't get the bone graft or gum transplant done in this calendar year anyway.  I will wait and see what the specialist says.  I had to pay 100.00 today for some special rinse stuff i have to use for the next month, and for some medicine they put in today. 
 
I never want to have another surgery either.  I have had well over 20 surgeries in my life, if I counted it would probably be over 30 with general anethesia.  No more for me unless its life threatening.
 
I hope you get over your cold and feel better soon.
Hugs.
Calle
 
 
 
Original Message -----
From: Vicki
Sent: Thursday, June 25, 2009 3:43 PM
Subject: Re: [Dercums_Disease] problems with teeth ?

Calle
 
This will be long but please read on!
 
I am so sorry that I am just a negative person.  I been having a hard time with my teeth for the last
6 years.  The dentist will not pull them out. But they will put caps on them!! Hm??  They say I have
beautiful teeth why would I want to pull them out?  Maybe,  I can not afford the root canal then
I can't pay for the cap!  They are all dying.  I started to have to problem when my dercum's got out
of control. 
 
Back in 2007 I had a dentist replace my upper left side with 6 caps 2 had root canals.  The caps were
not put on right and they were hurting me that I could not chew on that side of my mouth.  I found
another dentist and he had to replace 4 caps out of the 6.  My insurance company will not pay for
most of the work because they already paid the first dentist. So now I have to take her to small claims
and my limit is $3,000.00.  My total insurance cost for 2007 was only 1,300.  So I had to pay $4,121.00.
 
I complained to the dentist and the insurance company.  The insurance company said Thank You! to
me but we  don't collect your portion.  I said so I did you a favor an I get nothing.  She says Yep!!
The dentist feels that she was told that she only has to  pay me the co-insurance. However, to the
reports I have different amounts. 
 
So she figures that she only needs to pay me $695 on two teeth.  But in true life the bill came up to
$909.00. a tooth  and half of that is $422.22 the $422.22.  Then there was the x-rays and the others
visits I had gone to go and see specialist.   Then My current dentist work on some other teeth for me
that was not approved by the insurance company and he found de cay under both caps and he also
found 2 cavities on one because of the decay.  My current dentist said that those to teeth should
also be included in the reimbursement because they were capped on wrong.  If they were the
decay would of not been there.
 
After all this, My current dentist told me I should get some teeth back on my right  side.  About 12
years ago I had 2 in the back of my mouth removed.  They have not bothered me once.  No pain at
all!  Anyway, I went to another dentist within the same office to see if they could screw some teeth
into my top of my mouth bones.   She had some mouth x-rays taken.  Asked if I had sinus problems and
if I took anything for it.  My mother always did and my husband does and neither one finds relief from
taking it so I am not going to waste my time and money taking it.   The dentist said that sinus has been
known to make holes through your airways.  I continued to listen to her.  Then I asked her the cost
$12,000.00.  I do not have that kind of money!  My insurance is not going to cover it.  I have no current
problem now.  I have learn something through my experience and listening to everyone else.  I will
never go to a operating room unless I am awake or it is an emergency.  I do not want to be operated
on ever again.  I want to die as I am.  No more surgery. 
 
You have to ask yourself:  How bad is your situation?  Can you live with it?  Can you go and get a
second opinion?  What kind of honors  does the hospital have? What about the Doctor?  Is is just
learning? How many operations has he Done?  Is a trainee going to do it? I am sorry you might not
need this surgery!  My brother-in-law just had a triple bypass surgery.  He is okay now.  However, he
picked up a virual infection of the in tensions.  A deadly kind.  No one could visit him.
 
Isn't that sad!  I stayed away completely.  So now I picked up a chest cold from someone.
I feel like I could sleep!    
 
Hugs Vickie  


From: Calle_Kitten <calle_kitten@yahoo.com>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.
 
It really wasnt bad, she did it on two different days, and boy am I glad its over.
 
However, I have issues.
 
One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?
 
Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft.  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.
 
Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.
 
Hugs.

Calle


#28504 From: "frincess51" <frincess51@...>
Date: Fri Jun 26, 2009 2:22 am
Subject: Re: Stomach bloating/swelling?s
frincess51
Offline Offline
Send Email Send Email
 
Hi Rodney,
I get the stomach bloating when I eat certain foods.  Probably due to allergy, I
suspect.  Maybe you should keep a diary on when it happens for a week or so and
see if you can relate the symptoms to consuming a specific food.  I also get
bloating if I am under a lot of stress or drink too many carbonated beverages. 
I eliminate it by avoiding the triggers and it eventually dissipates on its own
in a day or so.  I don't have an immediate fix for it, sorry!
Take care,
Carole


--- In Dercums_Disease@yahoogroups.com, "nomadeclipse" <nomadeclipse@...> wrote:
>
> Hello
>
> How do you guys deal with stomach swelling/bloating?
>
> Can you make your stomach go back down to normal?
>
> Rod
>

#28503 From: Suzi More <suzimore92@...>
Date: Fri Jun 26, 2009 12:43 am
Subject: Re: problems with teeth ?
suzisblue
Offline Offline
Send Email Send Email
 
I have a dentist who wanted to pull one of my back molars, I had continuos gum infections and hate that deep cleaning but I will go when I have to. I told the dentist to let me put it off because I was beginning a new vitamin called strovite advanced and that someone I knew had had it prescribed for gum disease, That was about three years ago and I have been taking it reigiously since then. I went back last year to the dentist and he could not find anything wrong with that tooth and it was not wobbly like before. I am not lying. I also use baking soda on an electric toothbrush as well as brushing with hyfrogen peroxide and gargling with hyfrogen peroxide. Well, I am in pain 24/7 except for the times I am in the new hot tub that Myron bought last week and the Gabapentin is helping but at least we are allive. I watched the last hours of news and see the stars like Farah and Michael Jackson falling like flies. And I am still here, I think God  wants me here.
Suzi


From: Calle_Kitten <calle_kitten@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, June 25, 2009 4:28:41 PM
Subject: [Dercums_Disease] problems with teeth ?

Hey all.  I went to a new dentist to get my teeth cleaned, and she decided a deeeper than usual cleaning was necessary.
 
It really wasnt bad, she did it on two different days, and boy am I glad its over.
 
However, I have issues.
 
One tooth has a very very low gum.  2 Years ago, they tried to do a gum transplant, but it failed.  This dentist said I need another one.  However, it is all "connective" tissue, and I know DD causes problems with this.  Any advice anyone ?
 
Secondly, she found one tooth with total bone loss on one side of it.  She says I need a bone graft..  YIKESSSSSSS.  This is very scary for me.  I broke my knee in 2004, and after 8 months and a surgery, it still had not healed.
 
Anyone had any experience with either a gum transplant or bone graft in their mouth ?  I gotta tell you, this is really freaking me out.
 
Hugs.

Calle


#28502 From: "nomadeclipse" <nomadeclipse@...>
Date: Fri Jun 26, 2009 12:32 am
Subject: Stomach bloating/swelling?s
nomadeclipse
Offline Offline
Send Email Send Email
 
Hello

How do you guys deal with stomach swelling/bloating?

Can you make your stomach go back down to normal?

Rod

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