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#22203 From: Dercums_Disease@yahoogroups.com
Date: Tue May 1, 2007 8:41 am
Subject: File - GHN - Group Guidelines & Rules of Netiquette.htm
Dercums_Disease@yahoogroups.com
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Global Health Network

 

http://www.GlobalHealthNetwork.org

 

Group Guidelines and Rules of Netiquette



The Group owners/moderators will enforce these guidelines!

 

The Global Health Network support group community gives persons affected by various diseases or disorders, family members, friends and medical professionals a place to meet, interact, and share ideas with each other. Just like a real community, you may have different opinions than other group users. Our Group experience is best when people remember a few rules. Herein, we have set out guidelines and Rules of Netiquett for participation in our group.  Here are some of the key things to remember:

  1. You may not harass, abuse, threaten, or advocate violence against other members or individuals or groups.
  2. You may not post content that is harmful to minors.
  3. You may not post content that is obscene, otherwise objectionable, or in violation of federal or state law. 
  4. You may not add members to a group without their permission. 
  5. You may not use the group for commercial or advertising purposes.
  6. You may not post content which infringes the intellectual property, privacy or other rights of third parties.
  7. Some content may be more appropriate in some contexts than others. We reserve the right to remove content that it determines deemed to be inappropriate and in violation of our rules.
  8. You may not use the group solely for the purpose of storing and archiving files.

If you are unsure whether your content is consistent with these policies, please err on the side of caution and do not post it!

NOTE: In the beginning, posts will be moderated to ensure adherence to the group Guidelines and Rules of Netiquette.

Our Right to Terminate Group Membership.

The group owner(s) and or moderator(s), in their sole discretion, may terminate or remove any content or your membership immediately and without notice if (a) it is believed that you have acted inconsistently with the spirit or the letter of the group, the group’s guidelines, or (b) believed you have violated or tried to violate the rights of others. Please help us keep our group an enjoyable and positive experience. If you see a post that violates our rules, please let us know by contacting
David Hughes at dhhughes@....

 

Read on for Group Rules of Netiquett!

 

Rules of Netiquette

Joining a List/Discussion Group

  1. When you join a list, save your introductory welcome message! Welcome messages generally contain important information about the group -- the rules and guidelines, instructions on how to post to the group, how to subscribe, how to unsubscribe, etc. Follow any and all guidelines that the list owner has posted. The list owner establishes the local "netiquette" standards for her/his list and retains the right to deny access to the group for those violating the rules.
  2. When you join a list, monitor the messages for a few days (or read through the list archives, if available) to get a feel for what common questions are asked, and what topics are deemed off-limits. This is commonly referred to as lurking. When you feel comfortable with the group, then start posting.
  3. See if there is a FAQ (Frequently Asked Questions) – for a group that you are interested in joining. Veteran members get annoyed when they see the same questions every few weeks, or at the start of each semester.   Our group does have a FAQ page available in the database.
  4. Use your own personal Email account; don't subscribe using a shared office account. There are many free email websites out there -- Yahoo!, Hotmail, etc. - you may find it useful to use one of these type of accounts for all of your list mail. Also turn off any Auto-Responders - they create extra mail for people posting to the list and can cause people to stop posting.

Posting - General Tips

  1. Keep your questions and comments relevant to the focus of the discussion group.
  2. Do not post in ALL CAPS. Capitalize words only to highlight an important point or to distinguish a title or heading. *Asterisks* surrounding a word also can be used to make a stronger point. Capitalizing whole words that are not titles is generally termed as SHOUTING!
  3. Do not send "Me Too!", "Thank You", etc. messages to the group! Send those directly to the original poster. A private "Thank You" is nicer too!
  4. Do not send attached files. If you have a file that you want to share, advertise that you have them available and those who are interested can request them via private e-mail off list.
  5. Do not send SPAM. SPAM includes virus warnings, get-rich-quick schemes, secret cookie recipes, political propaganda, and chain letters (i.e. Pass this letter on to 10 people to have “Good Luck”). Most of these are hoaxes and are not welcome on mailing lists. They only serve to irritate people.   Definition of Spam:   It is unsolicited.  It is part of a “mass mailing or the sender is a stranger to the recipient.  (The recipient has never had a willful personal contact with the sender.)
  6. Try to read through the day's messages before responding so that twenty people don't end up answering the same question. Keep the messages that you think you'd like to respond to and delete the others. Then go back through and begin your replies. If you can, put your replies all in one post (known as combining posts).
  7. Do not send or forward personal email to a list or another person without permission.  This is a copyright violation and a serious breach of privacy and you may be removed from a list for doing so.
  8. When going away for more than a week, unsubscribe or suspend mail from any mailing lists or LISTSERV services. Directions for how to do that should have been included in the introductory welcome message that was sent to you went you subscribed.
  9. When replying to a message posted to a discussion group, check the address carefully to be certain it's going to the intended location (person or group). It can be very embarrassing if you reply incorrectly and post a personal message to the entire discussion group that was intended for an individual.
  10. Use discretion when forwarding a long mail message. It's preferable to reference the source of a document and provide instructions on how to obtain a copy. If you must post a long message, warn the readers with a statement at the top of the mail message. Example: WARNING: LONG MESSAGE
  11. Resist the temptation to "flame" others on the list. Flaming is the act of responding in a highly critical, sarcastic, or ridiculing manner - especially if done on a personal level. Remember that these discussions are "public" and meant for constructive exchanges. Treat the others on the list as you would want them to treat you.
  12. Do no send "unsubscribe" requests to the list. Other people on the list are not interested in your desire to be added or deleted. Any requests regarding administrative tasks such as being added or removed from a list should be made to the appropriate area, not the list itself. Refer to your introductory welcome message for instructions on how to unsubscribe or change your subscription settings. You were able to subscribe on your own, you should be able to unsubscribe on your own as well.
  13. Don't feel obligated to send a personal introduction or biography to the list when you first join unless the list guidelines specifically request that you do so. However, if someone does post a message of this type, it's OK if current members wish to welcome these people into the group and make them feel at home. Doing this on low volume lists helps to stimulate conversation. On high volume lists though, it is suggested that these people be welcomed using their private email address rather than have several welcome messages cluttering up group related discussions.

Posting - Subject Lines

  1. Be sure the subject line reflects the topic. In other words, don't auto-reply and start a new thread leaving the old subject line in the header. This of course, providing that your software will allow you to change the subject. (I don't know of any email program that *doesn't* allow it.)
  2. Put your entire comment in the body of the message. Don't begin your message with a few words in the Subject line and continue in the body of the message. That leads to discontinuity of the message and defeats the purpose of the Subject Line.
  3. If you receive your list mail in Digest form, change the subject line to appropriately reflect the topic of your post. A subject of "Re: Digest xxx" helps no one.

Posting - Quoting

When quoting another person, edit out whatever isn't directly applicable to your reply. Don't let your mailing software automatically quote the entire body of messages you are replying to when it isn't necessary. Take the time to edit any quotations down to the minimum necessary to provide context for your reply. Nobody likes reading a long message in quotes for the third or fourth time, only to be followed by a one line response: "Yeah, me too."

What does quoted text look like? Email programs can display quoted text in a variety of ways, but the most common is for each line of text to be preceded by the "greater than" symbol (>).

> This is quoted text

Some email programs will simply add the line "--- Original Message ---" (or something similar) to the top of the previous message with the expectation that you will type your reply above that. While this style of quoting is okay in a business situation -- that is, when you are having a discussion with a co-worker and would like to keep the entire message thread within each email -- it is definitely NOT okay when using discussion lists, as it only serves to make the mail difficult to read. If you are using an email program that quotes in this fashion, you will need to manually create your quoted text. The simplest way to do this is to edit out the text you don't want and add two slashes ("//") to the beginning and ending of the text you'd like to quote.

//This is also quoted text//

The number one rule of quoting is quote judiciously. Quote only what is essential to make it possible for the reader to understand what your posting or email message is about. As a rule avoid quoting an entire message (signatures and all). It is not judicious to quote, say, a hundred lines of discussion just to input a single line of one's own. Proper quoting is a skill. Please devote some time to working the quote appropriately. Don't be lazy in this respect.

Leave a blank line between the quoted text and your reply or else your text and the quoted text will difficult to distinguish from each other.

Where is the best place to put your reply? Above or below the quoted text?

BELOW! Some more recent standard email and newsreader programs have assumed a very problematic feature. They include the message which you are responding to below your message and expect you to type your reply above it. Don't allow that to happen! The proper order is

>Quote 1 (properly pruned)

Your response 1

>Quote 2 (properly pruned)

Your response 2

In other words, put each appropriately trimmed item that you choose to quote before each of your own comments respectively. Remove any remaining "post quoting." Let me emphasize. Do not leave the entire earlier posting, which you have been responding to, at the end of your own posting.

Answering above the original message is called top posting. This is sometimes, called “The Jeopardy Style.”  Discussion groups are Q & A not A & Q.

These things SHOULD NEVER be in quoted messages:

  1. Headers or any Subject, Date, From, Reply-To, To, information, nor any general salutations.
  2. Entire posts! Keep your quoted lines down to 4-6 for each different issue you are addressing.
  3. Widowed quote lines. This means a line consisting of only one word getting stuck between two regular length lines of quoted text. You make the digest listing TWICE as long when you allow that. If the quoted material comes out with an orphaned word, take the time to move everything around so there aren't a bunch of holes in your post. Often this is a problem with keeping the font for your mail program too low. Please change to a bigger font size if your quotes are producing orphaned words.
  4. Sig lines, signature text, ads or footers from previous posts (you know, like the ones that tell you how to unsubscribe or how to contact the list owners, etc.)

Posting - How Do I Edit My Messages?

Help! I've been asked to "edit my messages" but I don't know how!

We were all new once, so don't let it bother you that you don't know how to edit. :) Editing a message is very easy. With a little practice, you'll wonder how you ever got along without it!

When you are replying to a post, hit the REPLY button just as you have been doing. Hitting the REPLY button will include the entire OLD message in the NEW message you are creating. The goal of "editing" your message is to get rid of any information from the previous post that you don't need in order for your reply to make sense.

To edit, put your cursor at the top left of the section you DON'T want to include (for example the To/From/Subject stuff or the message footers and people's signature lines. Click and hold the left mouse button and drag across the section to highlight it. Then hit both the delete key and the space bar or enter key (whatever is comfortable for you) and it will remove the unwanted section. If you accidentally remove more than you intended, go to the menu bar at the top of the screen, look under EDIT and click on "Undo".... then start again. 'Undo' is also available from the menu that pops up when you right click on the mouse. Or pressing the CTRL button along with the Z button will also "undo" the last action.

Also, when you are replying to different portions of a previous message, it is normal procedure to skip to the different portions you are replying to using the "question, answer, question, answer" format discussed in the previous section. Just make sure you hit the Enter key to leave a space after the quoted text and include your comments below that section of the message so that people can tell where the quoted text ends and your replies begin. It makes it so much easier for everyone to understand what you are replying to.

You might be wondering why we ask people to please edit their messages. There are many reasons to dislike excessive quoting. The most common are:

1.      Some people are visually handicapped and use "screen readers"

2.      Some people pay for their download/transfer usage or pay for their time online on a per-minute or per-hour basis.

3.      It clutters up the Digests and makes them darn near impossible to read.

4.      It makes it more difficult to follow the discussion. If your reply looks like it's part of the quoted portion, it can easily be missed. Also, if you don't include *any* quoted material, your reply won't make any sense to anybody. But most importantly,

5.      The List Mom doesn't like unedited posts. Can we say "pet peeve?" :)


ACRONYMS/SHORTHAND

Internet users in general have developed their own shorthand for e-communications. There is a comprehensive list of e-shorthand and emoticons (those little smiley faces made up of keyboard characters to indicate emotion) that can be found at the website here: http://www.stevegrossman.com/jargpge.htm

Another smaller, yet Early Edition skewed list can be found here: http://www.geocities.com/Hollywood/Makeup/3281/acronym.htm

For anything not covered in either of those sites, the general thing to keep in mind is that fans of a particular series will most often make acronyms out of the episode titles (DWAR for "Don't Walk Away Renee," etc.), out of the character names (GH for Gary Hobson), or out of the actor names (FS for Fisher Stevens). Keep those things in mind, and you shouldn't have any troubles.

Some commonly used acronyms/emoticons include:

LOL = Laughing out Loud
ROFLOL = Rolling of Floor Laughing out Loud
TPTB = The Powers That Be
TIIC = The Idiots In Charge
OT = Off Topic
TAN = Tangent
IMO = In My Opinion
IMHO = In My Humble Opinion
YMMV = Your Mileage May Vary
<g> = grin
<G> = big grin
<eg> = evil grin


Acknowledgements:

Information contained in this email netiquette document has been culled from various sources. The list below contains some of those sources as well as other informative documents on Netiquette and proper quoting techniques. I recommend reading them all too thoroughly familiarize yourself with the process. Many of them are geared towards Usenet users, but the principles are the same.

ListManager's FAQ Page with section on "How Do I Edit?" - geared towards Onelist/eGroups/YahooGroups users.

Quoting Text in Replies from the news.newusers.questions FAQ.
A bit more on the Netiquette and quoting by
John Corliss.
Quoting from Zen and the Art of the Internet.
Trim down your quotes in Email Group Netiquette Guidance
Email Quotes and Inclusion Conventions
Quoting in JafSoft Limited's Introduction to the Internet
Proper quoting Alex D. Baxter
The Basic Rules of Netiquette; search for "Quoting"
On netiquette by Julie Waters; search for "Quoting".
Email Netiquette by Randy Ryan
http://www.ultranet.com/~mobius/Roadmap/map07.html
http://www.geocities.com/CapitolHill/1236/nomime.html
http://www.uwasa.fi/~ts/http/quote.html
http://www.uwasa.fi/~ts/http/tsfaq.html
Configuring Mail Clients to Send Plain ASCII Text from G. Boyd


This document, as well as the complete "Early Edition Lovers" list rules can be found at: http://groups.yahoo.com/group/earlyedition/files/EEL_Rules_and_Guidelines/

Note: You *must* be a member of the list and have already converted/merged your account with a Yahoo! ID in order to have access to the files area on the list's website. If you haven't already merged your account, go to http://groups.yahoo.com/convwiz and follow their directions. Then go back to the list's main page (http://groups.yahoo.com/group/earlyedition) and make sure you're signed in.

This document is: http://earlydues.usanethosting.com/ieel/netiquette.htm
Last Messed With:
August 13, 2004


#22202 From: "aubtsturgeon" <aubtsturgeon@...>
Date: Tue May 1, 2007 3:10 am
Subject: Trust Me I am a patient article on patient-Dr relationship
aubtsturgeon
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Great article thats interesting and points out 3 questions to help engage your Dr.

This article was in The Times, UK publication:

Enjoy the reading, hope it is of use to you Zer.
Regards. Aub
Article May 1st 2007:

As a resident in internal medicine at the Massachusetts General Hospital, Jerome Groopman regularly saw a middle-aged woman with seemingly endless complaints. One day, she had a new one – a pain in her upper chest. He concluded, quite quickly, that she had indigestion, so he prescribed antacids and sent her on her way.

"I became irritated with her. Her voice started to sound like a nail scratching a chalk board," he recalls. Several weeks later Groopman was urgently paged to ER. His patient had a tear of the larger artery that carries blood from the heart to the rest of the body. She died.

"People said that she probably would not have survived surgery even had I diagnosed it correctly, but the truth is that there was a chance she could have lived. I have never forgotten that, nor forgiven myself."

Dr Groopman is a haematologist-oncologist at Harvard Medical School and is one of America's most eminent medical figures. Yet it is only now, 35 years after his fateful misdiagnosis, that he understands what he calls "its genesis".

In a new book, called How Doctors Think, he spoke to hundreds of doctors, across a wide range of practices from Dallas to Canada, and asked them how, when faced with patients' problems, they came to the conclusions they did. What he discovered surprised him. They didn't know. And they had never stopped to ask.

And yet, Groopman argues, if doctors could be encouraged to analyse why they make the decisions they do, both the emotional and the financial cost of millions of misdiagnoses a year couldbe altered drastically. Crucially, the patient's role is key. By learning to read a doctor's physical and vocal language, and by asking some very simple questions, we can help our doctor to help ourselves.

"Never, in 35 years of medicine, have I heard one word about thinking patterns or cognitive psychology. And yet, not one doctor who I spoke to understood how and when their minds worked successfully, or not," he says, speaking from his office in Boston.

His first observation is that, more often than not, doctors make up their mind too quickly. He cites research showing that, on average, a doctor will interrupt his or her patient within 18 seconds of them telling their story – often signalling that they have already reached their diagnosis.

"The human mind relies on shortcuts," he explains. "Often these can work well and, because doctors work under very tight time pressures, with high levels of uncertainty and limited information, we need them. But the stakes are high, and if it goes wrong, the results can be catastrophic." To illustrate his point, Groopman points to the work that Amos Tversky and Daniel Khaneman, psychologists from the Hebrew University in Jerusalem, carried out two decades ago.

(Kahneman won the Nobel Prize in economics in 2002). Together, they illustrated how certain patterns of thinking cause irrational decisions in the market-place – a pattern which can, says Groopman, be applied universally.

"They showed that when dealing with uncertainty, we tend to anchor on the very first piece of data presented to us. In a doctor's case, this might be notes from a previous doctor, or results of a lab test, but crucially, it is that first piece of information that you run with." This is especially likely considering younger doctors' reliance (on both sides of the Atlantic) on what he calls "cookbook recipes" – such as the algorithm.

"When I started out in medicine, the doctor's focus was on the bond between himself and the patient, with the latter's life story being as important as his or her reported illness. This had obvious positives, but also negatives – such as the lack of scientific rigour. As a reaction, there was a movement to try and standardise care. Algorithms, or decision trees, were introduced, whereby a doctor was told to follow cues in order to come to the correct diagnosis, and given related treatment guidelines. The benefit of it is that it relies on clinical data, which is important. But the problem is that unless you have identified correctly what the key symptoms are, the algorithm is useless."

Groopman believes that a return to a focus on the doctor/patient bond is not only a big battle – but an unrealistic one, given government targets and the length of waiting lists. Which is why, he says, the patient needs to help the doctor out.

"Had my Massachusetts patient known what to look for, she would have pinpointed certain traits – I was cutting her off short, and adopting an irritated posture. This is the first red flag. The reaction from a patient should be to say, `I have a sense we are not communicating well.' At heart, most doctors want to do the right thing, and should respond well to any attempt to maintain a good relationship."

All well and good, if it is Dr Groopman sitting on the other side of the desk. But what about the overworked local GP, who offers a withering look when you explain, yet again, that you are sure that your heartburn is "not normal"?

"If they do not respond to an attempt to communicate, you need to seek another doctor, immediately. Despite research showing that most patients pick up on the doctor's negativity, few understand its effect on their health, and rarely change doctors. Instead, they blame themselves for complaining (most especially in Britain, I suspect). But when I asked the hundreds of doctors I interviewed what they would do if they, as patients, perceived a negative attitude from their doctor, every single one flatly said he or she would find another doctor."

Groopman agrees that we are led to believe that doctors are right – a belief to which many themselves subscribe. "That is why the kind of questioning I suggest can be quite constructive."

If your symptom persists or the treatment is not working, the first thing you should do is repeat your story, even if you are not asked to, he says. "Sometimes, he or she will hear something they didn't hear the first time round. Sometimes you might say something you had omitted. Think of it as a crime scene: you and your doctor are looking for new ways to prove you are innocent."

The next thing patients should do is express their deepest fears. "Sometimes what you are feeling is related to what you are fearing, but the fear is so intense you are reluctant to express it, or because you think you might jinx yourself. The doctor needs to hear that. He can explain very quickly why your abdominal pain is not colon cancer, and this in turn has been proven to actually relieve the physical symptoms, which can be caused by the burden of anxiety."

For three decades as a practising doctor, Dr Groopman concludes, he looked to traditional sources of information to assist him in his thinking – textbooks, medical journals, mentors and colleagues. It is only now, at the age of 55, that he has realised he has another vital partner who, by posing a few pertinent questions, could help to protect him from the "cascade of medical pitfalls that cause misguided care". That partner is his patient.

Three vital questions

Groopman says every patient should learn three "cardinal questions" to ask their doctor:

1. What else could it be? is a key safeguard against against errors in thinking, and forces the doctor to examine his initial diagnosis. Did he throw the anchor to the wrong port, so to speak? This question will help him to start afresh.

2. Is there anything that doesn't fit? should be your next question. There is a cognitive error called confirmation bias, when a person, a doctor in this case, selectively draws on the data that confirm a preconceived idea. When a patient asked the first question, the doctor might have discounted any information that contradicted his initial theory. So by asking whether there is anything that doesn't fit, or is contradictory, it causes him or her to pause and let his mind roam more broadly.

3. Do I have more than one problem? should be your third question. In medical school, doctors are taught to use an ancient logic called Ockham's razor – an elegant philosophical principle, which dictates that you should always adopt a single explanation for everything. This is not always the case in medicine. If you have someone who has heart disease, diabetes and kidney failure, is on medication, and has a fever, having recently travelled to Spain, there might be more than one thing going on. This question will prompt your doctor to consider this.

My swollen hand – and the three doctors who hadn't a clue

Dr Terry Light, of Loyola University in Chicago, is a hand surgeon. When I spoke to him in the autumn of 2005, I took the opportunity to present the case of a patient with debilitating pain and swelling in his right hand. Over three years, the patient had consulted six hand surgeons and got four different opinions about what was wrong. I was that patient.

The trouble with my hand can be traced to my never having learnt to type. Ten years ago, I bought my first laptop and banged clumsily at the keyboard. I soon developed a roaring case of tendonitis. Then, one day, a woman was making her way toward the elevator. I was already inside and, reflexively, I extended my right hand, but it was too late. The elevator briefly closed on my wrist.

A few weeks after the incident, I struggled to open the lid of a bottle of fruit juice. Excruciating pain erupted in my right wrist. The hand became hot, red, and swollen. I couldn't move it. I took an antiinflammatory drug, and I went for X-rays and an MRI scan, which revealed cysts, essentially fluid-filled holes, within the scaphoid and lunate, two small bones on the thumb side of the wrist.

The first hand surgeon I consulted I will call Dr A. He told me that many people have cysts in their bones and suggested that I be splinted for a month. At the end of four weeks, I was back in his clinic. I had used the splint diligently, but I [still] had pain in my wrist. Dr A told me to see how my wrist felt when I used it out of the splint. I gradually started doing things with my right hand.

Then one day, I felt my hand begin to heat up. Within minutes it was swollen and red.

A year after I first consulted him, Dr A said, "I think you have developed a hyperreactive synovium." He suggested a surgical procedure to strip away all of it. Dr A had come to the end of his thinking. He invented something to respond to my plaintive questioning and suggested an operation that could be damaging. It was time to seek another opinion.

Dr B said that I needed three surgeries. I was increasingly frustrated and desperate for a solution, but leery of the idea of undergoing three operations.

I had to pull strings to see Dr C, one of the most renowned hand surgeons in the United States. He diagnosed pseudo-gout. "We need to do an arthroscopy," he said. This meant inserting an instrument like a flexible telescope into my wrist in order to see the actual bones and ligaments.

"I wonder if you could tell me what you expect to find with the arthroscopy," I asked. "I'll figure it out when I get in there," he said. I felt dazed. Dr C had offered a diagnosis that, while not invented, like Dr A's, was nevertheless inventive.

Dr D surprised me by examining not only my right hand but also my left. Dr D's scenario made sense. [He] proposed taking bone grafts from my hip, filling in the cysts, and repairing the ligament. I asked him how many times he had performed the operation. He paused and said, "Once."

"That's the struggle when patients are having pain," Dr Light said after hearing Dr D's thoughts. "You can see many things on an MRI, but nothing that's clearly responsible for the symptoms."

The key, Dr Light continued, is for "everything to add up. Picking up a scalpel and cutting can be just the wrong thing." This, though, was what Drs A, B, and C, without recognising a coherent and consistent pattern, were set to do.

After several weeks of considering Dr D's advice, and a similar diagnosis from a hand surgeon who is a friend, I learnt that Dr E had performed repairs of this type scores of times. I met Dr E. He was focused, saying that the arthroscopy and the surgery would be performed at one sitting. Overall, the surgery was a success. After five months, my wrist was about 80 per cent normal.

This was another message that Dr Light believes surgeons should communicate. "Nothing that you do in surgery is perfect. Everything is a compromise." Like most patients I expected to be restored to pristine condition. More often than not, that is unrealistic. While you cannot predict a specific outcome, Dr Light emphasised, you need to not paint too rosy a scenario. "You don't want to leave people disappointed."

Dr Light was revealing the kind of thinking that the most seasoned and expert doctors display: they think in sync with the patient. The patient should be helped to think in sync with the doctors, too.

Extracted from How Doctors Think by Jerome Groopman, published by Houghton Mifflin; available from Times BooksFirst for Ł18.99 incl p&p: 0870 1608080; timesonline.co.uk/booksfirst

 

 


#22201 From: Pamela Harrison <ozziespamela@...>
Date: Tue May 1, 2007 2:28 am
Subject: Re: Re:To Amy..OT
ozziespamela
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Hi Amy,
Are you kidding? 85 is hot for April here in Missouri too! I did break down and turn the A/C on. I can take cold way better than heat.
I do love my gardening but it is sure getting hard to keep up with. I used to spend hours on end out there. Now it is 10 or 15 minutes followed by a half hour rest. Frustrating, especially when there is so much to do. I managed to get 8 of my 40 glad bulbs planted today. Just keep plugging along.
Praying for a cool summer,
Pamela




Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

#22200 From: Pamela Harrison <ozziespamela@...>
Date: Tue May 1, 2007 1:24 am
Subject: Re: Re:To Sylvia...OT
ozziespamela
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Hi Suzann,

I know it sounds crazy, but I like it on the chilly side. As far as I'm concerned,the only good thing about summer is that my flowers grow and bloom. The heat kills me and 89 is just the beginning in this part of the country. I envy your 50s.

Pamela

----- Original Message ----
From: Suzann Cheney <scheney@...>
To: Dercums_Disease@yahoogroups.com
Sent: Monday, April 30, 2007 12:04:16 PM
Subject: Re: [Dercums_Disease] Re:To Sylvia...OT


Hi Pam and Sylvia,

We're still in the Spring mode here in Upstate New York with a whopping 51 as of the writing of this message!  That's as high as has been forecasted, so 89 degrees sounds like pure heaven to me!  I'm so tired from the cold and rain and hoping to get some warm air to the east coast very soon!  Enjoy the heat ladies!



Pamela Harrison <ozziespamela@ yahoo.com>
Sent by: Dercums_Disease@ yahoogroups. com

04/30/2007 12:33 PM

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Re: [Dercums_Disease] Re:To Sylvia...OT








That's funny, Sylvia. Exactly the same weather forecast here, except we hit 89 yesterday!
We started April in the deep freeze and now it is downright hot! Go figure.
Pamela


----- Original Message ----
From: Sylvia <afikaufman1@ msn.com>
To: Dercums_Disease@ yahoogroups. com
Sent: Sunday, April 29, 2007 10:29:57 PM
Subject: [Dercums_Disease] Re:To Sylvia...OT

Hi Pam,
I am glad you have gotten the stress under control. You are right to
not want to disturb the aliens, I think they feed on stress,,,lol.
Our high temp was 86 today and we sweated while helping my son move
but showers are forcasted for the whole of next week. Oh well, that
is Texas for you; if you don't like the weather just wait, it will
change.
Take care,
Sylvia



Ahhh...imagining that irresistible "new car" smell?
Check out
new cars at Yahoo! Autos.




#22199 From: "Jackie Hanan" <rubyjax@...>
Date: Tue May 1, 2007 12:07 am
Subject: RE: Crystal.....WILL...... Re: Correction........Women's group
rubyjax7
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Hi,.. Crystal thanks for the info! My server also upgraded this last week, and there were some glitches there too.

Also I meant to say something about your lap band surgery. How come you can’t take some of the meds? Did you think it was worth it to have the procedure? My Dr. mentioned maybe I might want to think about having it done, but I don’t think with my IBS which affects my whole GI tract I would be able to do it. I think I have a hiatal hernia too.

Jackie

P/s you said in another post that you moved. Where to?

 

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of wee5peeps@...
Sent: Monday, April 30, 2007 3:53 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] WILL...... Re: Correction........Women's group

 

Yahoo groups is notorious for this, partly because ISPs and spam blockers/offenders, partly because their system gets goofy on occasion, as evinced by the system going haywire a while back.

 

Crystal

 

On Apr 30, 2007, at 1:06 PM, Jackie Hanan wrote:

 



I was put on bounce over the weekend. Does anyone know why that happens? No wonder I wasn’t getting any mail!


#22198 From: "wee5peeps@..." <wee5peeps@...>
Date: Mon Apr 30, 2007 11:52 pm
Subject: Re: WILL...... Re: Correction........Women's group
mom2js_more
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Yahoo groups is notorious for this, partly because ISPs and spam blockers/offenders, partly because their system gets goofy on occasion, as evinced by the system going haywire a while back.

Crystal

On Apr 30, 2007, at 1:06 PM, Jackie Hanan wrote:


I was put on bounce over the weekend. Does anyone know why that happens? No wonder I wasn’t getting any mail!


#22197 From: 3spitz@...
Date: Mon Apr 30, 2007 9:10 pm
Subject: Re: Re:To Amy..OT
amypugliano
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Hi Pamela!
I spent my weekend outside, too, since it was about 85 here (which is HOT for April in CO).  I also spent time with my dogs (they are our kids!).  They love romping around in the yard, smelling everything... and barking at everything! :(  It's still pretty warm here today, but looks to be back in the 70's throughout the week.  I was ready to put on the A/C last night, since the house heated up really quickly and I was SO hot!  But the thought that it was still only April kept me from jumping on that-  it will be a long and hot enough summer not too far ahead!

I am glad you were able to do gardening-  that is such a relaxing and refreshing hobby. :)  Your yard must look beautiful!  Unfortunately our time in the yard has been spent working on sprinkler systems, pulling weeds, and ridding the grass of dandelions... FUN!

It's so good to hear that you're feeling a bit better-  I hope that you can continue to feel this great throughout the rest of the week-  Happy May! :)
Talk to you soon,
Amy

#22196 From: Suzann Cheney <scheney@...>
Date: Mon Apr 30, 2007 3:29 pm
Subject: Re: Re: Apprehension every time I go to a new Doctor
suzanncheney
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Hi Zer,

You are not alone with the apprehention of meeting a new doctor.  I too suffer those feelings, of not knowing how they will receive me or my diagnosis, and believe me, I've met some pretty mean docs!  They refuse to acknowledge the disease when they have no background in it.  They have been rude and short with me upon meeting me and it's really hard to take!  I usually just try to relax and ignore their negative remarks and try to get through the appointment as best I can and try to present my case as best I can.   Sometimes I go out in tears to only be angry and frustrated after the fact, but then realize I just wasted my time and theirs when we get nowhere during the appointment.  For me that's the worst part, because doctors are not cheap!  

I will cross my fingers and say a few prayers that this new MD will be a good one for you!  Stand firm and try not to let them intimidate you.  I know that's easier said than done, and I struggled myself with it, but I did do it and my husband each time told me how proud I was that I didn't take their crap.  What he also realized is the toll it took on my after each appointment, and for that he could understand as he said he almost yanked me out of each of their offices for the manner in which the were treating me, but since I was standing my ground he sat and waited to see how I would turn things around.  In most cases they listened half heatedly and I was left with no further answers.  Oh well, I chalk it up and move on, cuz I don't have the time to waste on people like that anymore!

Take care and I hope you can get the help you need from this new person.   Let us know how it goes!



"zer92780" <not4zermail@...>
Sent by: Dercums_Disease@yahoogroups.com

04/30/2007 09:19 AM

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[Dercums_Disease] Re: Apprehension every time I go to a new Doctor






I am starting at my HMO with a new MD. I am hopeful. She was
recommended by someone I met in the parking lot one day, after
seeing an MD who has not helped me since I went in August to
ask about extreme inflammation in my left hip that was affecting
my ability to sit/rise without assistance. That's scary, a loss of
mobility. He offered little help and was not open to talking with
Dr.Herbst or in exploring a possible Dercum's dx. So I am now
starting to see a different MD. I am hopeful of finding a valid dx
for what I take to be a flare-up of tissue in my left hip, same hip
that carries a sizeable saddlebag of fat that hangs and swings
independently outside my left hip/thigh. Is it a lipoma, a fatty
tumor? I'm not sure. It has a woody texture and I massage it to
loosen up the fat, thinking to create circulation that might carry
away some of the tissue or fluid or something. Am I dreaming?
Probably. MD says surgery is a massive risk at my age/size (63,
400#) and I am aware that many who have surgery experience a
regrowth of the tumors. That said, I am not in a position to add to
my mobility issues by having major surgery and recuperation on
my own. That is beyond my ability to manage. Life is difficult as
is, having to walk with a cane and with pain in the left hip that is a
barrier to sleep. I spend most of my time in bed as is. That's not
a life that I want to have for the rest of my days. So I am hopeful
that this new MD and I can come up with some alternatives that
will help me manage. She says the Oct. xray does not show soft
tissue, only bone. So what should I ask for? An MRI? -Zer

--- In Dercums_Disease#22156, "Sylvia" .....
> Hey girl, we understand......
> --- In Dercums_Disease, <we_r_blessed@> wrote:
> > I get so apprehensive every time I go see a new Doctor.....



#22195 From: "Jackie Hanan" <rubyjax@...>
Date: Mon Apr 30, 2007 8:06 pm
Subject: RE: WILL...... Re: Correction........Women's group
rubyjax7
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Will,……..i am not getting all the messages from my yahoo groups, and so I didn’t even see your answer to my last post. Thanks Kristi for jumping in here and letting me know there was this message.

I was put on bounce over the weekend. Does anyone know why that happens? No wonder I wasn’t getting any mail!

 

Anyhow Will, no offence, no insult, no hurt feelings. I posted what I did just to clarify more of what the women’s group was about. I thought perhaps I was too vague in my explanation of its purpose. And it must have helped because 2 more women joined!

 

Yes I’m smiling! And giving hugs, Jackie  {{{{{{{{{{hugs}}}}}}}}}}} :-)

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of klynlowery
Sent: Monday, April 30, 2007 11:56 AM
To: Dercums_Disease@yahoogroups.com
Subject: [Dercums_Disease] Re: Correction........Women's group

 

Hey Will,

What a great guy! Your support is always so encouraging! Thanks &
Hugs, Kristi

--- In Dercums_Disease@yahoogroups.com, "Will I Am" <waksmf@...> wrote:
>
> Jackie - I did not mean to give that impression, and I am sorry if I
did. I understand the purpose of the women's group, and I agree that
there is plenty of room to talk about how Dercum's has affected all
aspects of our lives, and the more we discuss it, and the more people
learn, the more progress we make. I did not mean to insult or offend.
Smiles, everyone, smiles! Will - I - Am
>


#22194 From: "klynlowery" <klynlowery@...>
Date: Mon Apr 30, 2007 7:55 pm
Subject: Re: Correction........Women's group
klynlowery
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Hey Will,

What a great guy!  Your support is always so encouraging!  Thanks &
Hugs, Kristi


--- In Dercums_Disease@yahoogroups.com, "Will I Am" <waksmf@...> wrote:
>
> Jackie - I did not mean to give that impression, and I am sorry if I
did.  I understand the purpose of the women's group, and I agree that
there is plenty of room to talk about how Dercum's has affected all
aspects of our lives, and the more we discuss it, and the more people
learn, the more progress we make.  I did not mean to insult or offend.
Smiles, everyone, smiles!  Will - I - Am
>

#22193 From: "Jackie Hanan" <rubyjax@...>
Date: Mon Apr 30, 2007 6:33 pm
Subject: Group update....Back Receiving
rubyjax7
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Hi everyone! Just a quick note here. I for some reason had a bounce on my e-mail from Yahoo, and so I didn’t receive anyone’s messages from over the weekend. I have no idea why that happened, but it’s fixed now.

Also, for those of you on digest, there is quite a bit of extra stuff added to the e-mails, and I am not sure how to get it off. I am sorry there is so much to wade thru before you get to the messages. I’ll check with Yahoo and ask what can be done about it.

Also you might want to either change it to no mail where you can still post, but you have to go to the group home to read. It won’t go to your mailbox. Or because we are still pretty small changing to individual e-mails won’t overflow your e-boxes at this point. :-)

 

Welcome to the new members; introduce yourselves when you feel comfortable!

Hugs, Jackie

 

 


#22192 From: "aubtsturgeon" <aubtsturgeon@...>
Date: Mon Apr 30, 2007 5:34 pm
Subject: Re: Apprehension every time I go to a new Doctor
aubtsturgeon
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Hi Zer,

the problem is it can be very hit and miss scanning for Dercum related
tumors due to what makes them - Adipose tissue.

Is there any chance you can get to see a very very good dermatologist?
They are experts in feeling for the unusual kind of lumps, whether
encapsulated or diffused and would be the best bet I feel in 1st step.

Sorry I canot suggest much more but I hope you manage to find someone
who can help!
Aubs


--- In Dercums_Disease@yahoogroups.com, "zer92780" <not4zermail@...>
wrote:
>
> I am starting at my HMO with a new MD. I am hopeful. She was
> recommended by someone I met in the parking lot one day, after
> seeing an MD who has not helped me since I went in August to
> ask about extreme inflammation in my left hip that was affecting
> my ability to sit/rise without assistance. That's scary, a loss of
> mobility. He offered little help and was not open to talking with
> Dr.Herbst or in exploring a possible Dercum's dx. So I am now
> starting to see a different MD. I am hopeful of finding a valid dx
> for what I take to be a flare-up of tissue in my left hip, same hip
> that carries a sizeable saddlebag of fat that hangs and swings
> independently outside my left hip/thigh. Is it a lipoma, a fatty
> tumor? I'm not sure. It has a woody texture and I massage it to
> loosen up the fat, thinking to create circulation that might carry
> away some of the tissue or fluid or something. Am I dreaming?
> Probably. MD says surgery is a massive risk at my age/size (63,
> 400#) and I am aware that many who have surgery experience a
> regrowth of the tumors. That said, I am not in a position to add to
> my mobility issues by having major surgery and recuperation on
> my own. That is beyond my ability to manage. Life is difficult as
> is, having to walk with a cane and with pain in the left hip that is a
> barrier to sleep. I spend most of my time in bed as is. That's not
> a life that I want to have for the rest of my days. So I am hopeful
> that this new MD and I can come up with some alternatives that
> will help me manage. She says the Oct. xray does not show soft
> tissue, only bone. So what should I ask for? An MRI? -Zer
>
> --- In Dercums_Disease#22156, "Sylvia" .....
> > Hey girl, we understand......
> > --- In Dercums_Disease, <we_r_blessed@> wrote:
> > > I get so apprehensive every time I go see a new Doctor.....
>

#22191 From: Suzann Cheney <scheney@...>
Date: Mon Apr 30, 2007 5:04 pm
Subject: Re: Re:To Sylvia...OT
suzanncheney
Offline Offline
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Hi Pam and Sylvia,

We're still in the Spring mode here in Upstate New York with a whopping 51 as of the writing of this message!  That's as high as has been forecasted, so 89 degrees sounds like pure heaven to me!  I'm so tired from the cold and rain and hoping to get some warm air to the east coast very soon!  Enjoy the heat ladies!



Pamela Harrison <ozziespamela@...>
Sent by: Dercums_Disease@yahoogroups.com

04/30/2007 12:33 PM

Please respond to
Dercums_Disease@yahoogroups.com

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cc
Subject
Re: [Dercums_Disease] Re:To Sylvia...OT






That's funny, Sylvia. Exactly the same weather forecast here, except we hit 89 yesterday!
We started April in the deep freeze and now it is downright hot! Go figure.
Pamela


----- Original Message ----
From: Sylvia <afikaufman1@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, April 29, 2007 10:29:57 PM
Subject: [Dercums_Disease] Re:To Sylvia...OT

Hi Pam,
I am glad you have gotten the stress under control. You are right to
not want to disturb the aliens, I think they feed on stress,,,lol.
Our high temp was 86 today and we sweated while helping my son move
but showers are forcasted for the whole of next week. Oh well, that
is Texas for you; if you don't like the weather just wait, it will
change.
Take care,
Sylvia




Ahhh...imagining that irresistible "new car" smell?
Check out
new cars at Yahoo! Autos.



#22190 From: Pamela Harrison <ozziespamela@...>
Date: Mon Apr 30, 2007 4:33 pm
Subject: Re: Re:To Sylvia...OT
ozziespamela
Offline Offline
Send Email Send Email
 
That's funny, Sylvia. Exactly the same weather forecast here, except we hit 89 yesterday!
We started April in the deep freeze and now it is downright hot! Go figure.
Pamela


----- Original Message ----
From: Sylvia <afikaufman1@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, April 29, 2007 10:29:57 PM
Subject: [Dercums_Disease] Re:To Sylvia...OT

Hi Pam,
I am glad you have gotten the stress under control. You are right to
not want to disturb the aliens, I think they feed on stress,,,lol.
Our high temp was 86 today and we sweated while helping my son move
but showers are forcasted for the whole of next week. Oh well, that
is Texas for you; if you don't like the weather just wait, it will
change.
Take care,
Sylvia




Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

#22189 From: barbara croker <lyonziefiddler@...>
Date: Mon Apr 30, 2007 3:14 pm
Subject: Re: Re: Apprehension every time I go to a new Doctor
lyonziefiddler
Offline Offline
Send Email Send Email
 
My reply to people now when they say BUt you look so great.. I tell them if you turn me insisde out you aould have nightmares forever... LOL
Lyonzie

we_r_blessed <we_r_blessed@...> wrote:
I'm just so depressed right now. I'm so tired of people saying, "But
you look great!" I'm hiding behind makeup. I wear my sun glasses
all the time. I'm just wore out.

--- In Dercums_Disease@yahoogroups.com, "Sylvia" <afikaufman1@...>
wrote:
>
> Hey girl, we understand. Those doctors seem to do more harm than
good
> sometimes but you are seeing one that is experienced with DD. You
know
> this is a rare find so YES, be happy.
> We are keeping our fingers crossed for you and sending happy
thoughts
> and gentle hugs your way.
> Take care,
> Sylvia
>
>
> --- In Dercums_Disease@yahoogroups.com, "we_r_blessed"
> <we_r_blessed@> wrote:
> >
> > I get so apprehensive every time I go see a new Doctor. I just
don't
> > trust them anymore. I have an appointment next week at UC San
> > Francisco, and I have to be honest and say that I'm almost
dredding
> > it. I should be happy since this Doctor is experienced with DD?
> >
> > I'm on disability now. I went to my work today just to say hi,
and I
> > left so depressed :( I ended up coming home and laying on my
heating
> > pad for an hour. I'm so tired all the time.
> >
>



Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

#22188 From: "zer92780" <not4zermail@...>
Date: Mon Apr 30, 2007 1:19 pm
Subject: Re: Apprehension every time I go to a new Doctor
zer92780
Offline Offline
Send Email Send Email
 
I am starting at my HMO with a new MD.  I am hopeful.  She was
recommended by someone I met in the parking lot one day, after
seeing an MD who has not helped me since I went in August to
ask about extreme inflammation in my left hip that was affecting
my ability to sit/rise without assistance.  That's scary, a loss of
mobility.  He offered little help and was not open to talking with
Dr.Herbst or in exploring a possible Dercum's dx.  So I am now
starting to see a different MD.  I am hopeful of finding a valid dx
for what I take to be a flare-up of tissue in my left hip, same hip
that carries a sizeable saddlebag of fat that hangs and swings
independently outside my left hip/thigh.  Is it a lipoma, a fatty
tumor?  I'm not sure.  It has a woody texture and I massage it to
loosen up the fat, thinking to create circulation that might carry
away some of the tissue or fluid or something.  Am I dreaming?
Probably.  MD says surgery is a massive risk at my age/size (63,
400#) and I am aware that many who have surgery experience a
regrowth of the tumors.  That said, I am not in a position to add to
my mobility issues by having major surgery and recuperation on
my own.  That is beyond my ability to manage.  Life is difficult as
is, having to walk with a cane and with pain in the left hip that is a
barrier to sleep.  I spend most of my time in bed as is.  That's not
a life that I want to have for the rest of my days.  So I am hopeful
that this new MD and I can come up with some alternatives that
will help me manage.  She says the Oct. xray does not show soft
tissue, only bone.  So what should I ask for?  An MRI?  -Zer

--- In Dercums_Disease#22156, "Sylvia" .....
> Hey girl, we understand......
> --- In Dercums_Disease, <we_r_blessed@> wrote:
> > I get so apprehensive every time I go see a new Doctor.....

#22187 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 10:56 am
Subject: Re: Kay,......OT
myokenaustralia
Offline Offline
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Thankyou Jackie:-)
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 4:28 PM
Subject: RE: [Dercums_Disease] Kay,......OT


> Sure Kay..if you go to Yahoo groups and type in dercumsdiseasefor_women my
> group is listed right under this group. I just went there and was able to
> pull it up just by typing in Dercums disease in the search health groups.
> That will be great if you want to join. :-)
> Hugs, Jackie
>
>
>
> -----Original Message-----
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of IslandRetreat
> Sent: Sunday, April 29, 2007 9:11 PM
> To: Dercums_Disease@yahoogroups.com
> Subject: Re: [Dercums_Disease] Correction.........[For the mods]
>
> Hi there Jackie...
> may I have the addy for the group:-)
> I cannot find it.
> To :-.....Myoken1@...
> Cheers!
> Kay~K.
>
>

#22186 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 10:53 am
Subject: Re: Re: Organ Infiltration of Dercums Disease from Kay~K.
myokenaustralia
Offline Offline
Send Email Send Email
 
Thankyou Jackie..and yes life can be good;-)
So glad that you can relate to the LDN use..terrific!
Certainly low dose naltrexone is not mainstream medicine.
Cheers to you Jackie.
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 4:37 PM
Subject: RE: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease
from Kay~K.


> Hi Kay and Aub,..from what I have heard in order to use LDN you first have
> to go off all pain killers for about 3 weeks I think before you can use
> it.
> I have friends w/MS that are on it, and they are getting good results. But
> just like you said Kay there are some Dr's who are not prescribing because
> they don't either know about the low dose effects, or they've never heard
> of
> using it for other illnesses.
> Kay that is fantastic it has worked so well for you. taking your dogs into
> the sea must be delightful.
> Smiles, Jackie :-)
>
>
>
>
> The other medication I am using with success to give me fluidity of
> limbs..and movement without pain or restriction is Low Dose
> Naltrexone...not
>
> to be confused with the high dose given to alchoholics and drug addicts.
> This is how it came about;-
> My doctor was oversease ( USA) at a drug conference...looking at
> alternative, homeopathic, and new uses for old drugs..it was in the USA at
> the conference that he heard about Low Dose Naltrexone....the dosage being
> 3-5mg for males..4.5 mg for females...it was being used with great success
> for MS sufferers...and also for autism and chrons disease...and many
> more,,,it DOES NOT cure any disease..it simply gies much more ease of
> fluidity, and cuts down on the bad effects of disease..I can now walk for
> quite a way..I now do at least a 1/2 kilometre morning nad 3/4 kilometre
> evening..I  take my dogs into the sea at least once a week..I have fun!! i
> could not walk without aids for 3 years prior to taking the drug...I am
> doing things that were too long denied me with this insidious disease..I
> am
> a great addy for the drug..LOL...but each to their own thing.
> Low Dose Naltrexone works on the good endorphins...I take it in the
> evening
> before bed..so that it can work on the good endorphins between 2 am and 4
> am..which is when they are most active..it gives the good endorphins a
> boost..so that it helps the immune system.
> Sometimes I go for a week taking it during the day..gives my day a real
> punch! And I love that:-))))))))
> Here are some links that will describe the drug for you Aub...it may be of
> use..I don,t know..everyone is an indivdual with indivdual needs...the
> mainstream of doctors does not want to know about the drug..but there is a
> group on Yahoo where the group owner has the names and phone numbers of
> Doctors in the USA who will prescribe the drug...and also lists of
> Compounding Chemists who dispense the drug...it has to be a compounded Low
> Dose Naltrexone..as otherwise if made with fillers in the capsules it does
> not work so the story goes..I have  compounding chemists in 2 other states
> that dispenses it for Aussies when prescribed.
> I should say that there is nothing illegal about the drug...just a
> different
>
> take on meds;-)
> Okay I,m off to make up some curry and onion and some tomatoe and parsley
> sausages,,then I,m off to the walking tracks with my 3 french bulldogs..my
> life is good...
> And I should say Aub that my secret to a good state of mind and is really
> simple...a litle personal..but simple..lol...I am a committed buddhist and
> during my schooling about buddhism and before I took my vows as a buddhist
> and boddisattva ,my Lama and some monk friends etc..gave me some great
> teaching on meditation and  the ways.of buddhist meditation..and just in
> case you think.."oh no..another  buddhist nut..."..lol....
> I do not push the buddhist view on things ;-))Anyone can do buddhist
> meditation..my favorite is 'sky gazing'...;)
> But again..that is another episode...
> Cheers Aub!
> Kay~K.
>
>
>
> ----- Original Message -----
> From: "aubtsturgeon" <aubtsturgeon@...>
> To: <Dercums_Disease@yahoogroups.com>
> Sent: Monday, April 30, 2007 1:36 AM
> Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
> Kay~K.
>
>
>>
>> Kay~K,
>> this is truly a story of coping with Dercums if I have ever seen one.
>> Would you be happy to say what medicines you take, and how you built the
>> mental attitude to cope as this could help many.
>> Thanks for an in-depth post on your experiences.
>>
>> Aubs
>>
>
>
>
>
>
> Yahoo! Groups Links
>
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>
>

#22185 From: "Will I Am" <waksmf@...>
Date: Mon Apr 30, 2007 11:05 am
Subject: Correction........Women's group
waksmf1984
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Jackie - I did not mean to give that impression, and I am sorry if I did.  I understand the purpose of the women's group, and I agree that there is plenty of room to talk about how Dercum's has affected all aspects of our lives, and the more we discuss it, and the more people learn, the more progress we make.  I did not mean to insult or offend.  Smiles, everyone, smiles!  Will - I - Am

#22184 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 11:00 am
Subject: Re: Re: Organ Infiltration of Dercums Disease from Kay~K.
myokenaustralia
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Thankyou Dorrit..like you, that is what I beleive...
thanks for being  such a good friend at this time..
Cheers!
Kay~K.
----- Original Message -----
From: "Dorrit Hvam" <fiori68@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 7:32 AM
Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
Kay~K.


> Dear kay
> You are one VERY BRAVE lady  !!!
> Very brave to go public with all of this, and very brave for all that
> you have been through, and still have a positive attitude towards
> life.
> I do hope that you will soon get this new operation over with, so you
> can enjoy life again in spite of what DD has done to you.
> I am also happy that youi warn people against believing that DD can
> be "removed". In my opinion it's settled in all of our cells, and
> will keep coming back again and again, unless someone finds out what
> is wrong with us, and how to keep the growths down.
>
> My very best wishes to you!
>
> Dorrit
>
>
> --- In Dercums_Disease@yahoogroups.com, "IslandRetreat" <Myoken1@...>
> wrote:
>>
>> Hello Will, hello Sylvia..thankyou for your advice.
>> And hello everyone:-)
>>
>> I am a little foggy as to who started the email thread regarding DD
> finding
>> it,s
>> way to internal organs...but will attempt to give my findings
> anyway..can't
>> keep an old dog down for long..lol.
>>
>> It has been found and documented that I unfortunately have DD
> angiolipomas
>> and lipomas growing and flourishing internally(  as well as a
> multitude of
>> external ones) .....some years back..maybe
>> just a couple ...I gave Dora the info on these...and I believe it
> was used
>> to help towards solving the mysteries of Dercums Disease...so "HI"
> to Dora
>> if you are reading dear lady...it has in turn helped the UK
> research.,,which
>> in turn was  given to Dr Herbst on request.
>>
>> Okay.... when just a young thing..I,m rather decrepit now,,,I had
> enormous
>> trouble with pain in the breast area ...it was simply horrid...also
> the
>> breast area was extremely swollen and completely filled
> with 'lumps'...this
>> was of course exacerbated during my  6 pregnancies...( 5 of my
> children have
>> DD ) and breast feeding them all.
>>
>> When in my early 30,s and finished child bearing...I went to my GP
> of the
>> time..and asked him if there was anything that could be done about
> the
>> 'lumps' in my breasts...as he had always prescribed pain
> medications , but
>> the growths were now disfiguring me and making my breasts
> constantly ache to
>> the point of distraction big time.
>> He sat me down for a 'heart to heart' and explained to me that the
> lumps
>> were part of DD ..which he had seen before in his home country
> Russia..and
>> also which had been diagnosed in my case in 1957.when I was still a
> young
>> thing...he then explained how hard it was to tell if some  lumps
> were
>> cancerous in my case as it would not be nigh on impossible to
> biopsy all of
>> the lumps...as my breasts were now just a conglomeration of lumps,
> lumps,
>> lumps.
>> He suggested to me that the only way to rid myself of the pain was
> to have a
>> double mastectomy of both breasts...oh dear....
>> Well I went home and thought about this for 6 months or so....then
> I could
>> not bear the pain anymore...so I went back to him and he arrangesd
> for the
>> double mastectomy ..remember this was some years ago, I am in my
> mid sixties
>> now...and mastectomys were done a lot more often in those days..and
> always
>> the whole breast/breasts...and lymph glands..and so it was
> done...ah! no
>> more pain ...but a huge battle to overcome the physcological
> female 'missing
>> feminine parts'...
>> Then 5 years later after my doctor who always I think felt for me
> regarding
>> my situation ( breastless lol)...decided that I should go see a
> very fine
>> professor of plastic surgery in our main capital city..so off I
>> trotted...;_)
>> This professor decided that he could take a large part of my tummy
> muscle
>> and some fat too..and transplant it in the area where my breasts
> used to
>> be...and also fashion them etc..
>> So it was done...and also my chest wall was scraped....as DD was
> clinging to
>> it ...but alas I could no longer raise myself up from  a laying
> down
>> position...tummy muscle gone for the most part.
>> Unfortunately infection set in to the left side , and it had to be
>> mastectomied once more..argh! ...but there is a little left;_)
>> So we come to the present day.....my breasts are now exactly as
> they were
>> when I was in my early 30,s...very painful..and filled once more
> with
>> DD.......you see the DD had obviously been in the tissue either
> from the
>> tummy perhaps..or ...my current GP,s theory is that some DD was
> left on the
>> chest wall and breastbone etc...we  don,t really know...but I,m
> surely not
>> going down that road of mastectomies again..it is not worth it..so
> please
>> anyone who is contemplating haveing a mastectomy...think long and
> hard
>> before you do..as it is a given that it will all come back..mine
> did...and
>> the pain is still there.
>>
>> Okay on to more DD in internal organs chat :-)
>>
>> Ever since my last child was born ( number 6)  in 1972..I have had
>> incontinenece problems...argh!.
>> So........off to specialists, urologists etc...to see what can be
> done..
>> Not much really...my uterus is completely filled with DD
> growths..DD tumours
>> they are called here....
>> How were they seen..? by giving me extensive internal ultrasounds
> with an
>> ultrasonic wand inserted...well it seems there is always a way eh?
> just like
>> they found the growths in my breasts and on my chest wall..they had
> to be
>> seen in reality...and it seems even a local normal internal exam
> sees them
>> rearing their ugly heads:-) ..and pictorially on the ultrasounds.
>>
>> More?...keep reading...lol:-)
>>
>> 2 years or so ago whilst having an abdominal ultrasound due slight
>> discomfort and and swelling of the abdomen...they found an
> abdominal aortic
>> aneurysm...not good...so began a series of angiograms to view the
> aneurysm
>> clearly..and during a visit to my specialist vascular/endovascular
> surgeon
>> saw what looked  like white shadows on the screens ( like large
> tv;s ) in
>> the operating theatre...he told me to take a look..and as I was
> only under a
>> local anesthetic whilst he was putting a stents in my illiac and
> femoral
>> arteries..which he had discovered when I lost the use of my left
> leg to
>> extreme pain..which proved to be blocked arteries ..( femoral and
>> illiac)...I looked and they were all the world like little white '
> mini
>> clouds'..to my eye...I asked if he thought they were DD
>> lipomas/angiolipomas..he said " I don,t like to say as I know
> nothing about
>> your DD at the present time...but I certainly cannot dispute
> it..."they
>> showed up throughout the areas around my aorta area,  kidney and
> liver area.
>> Just recently I had to go for CT Scans before  another   angiogram
> and
>> possible angioplasty...there were definite angiolipomas on my
> kidneys and
>> liver..very visible on the CT....
>> Okay on to my esophagus..are you still reading??:-)))
>> I had been having trouble with an annoying gaspy business with my
> throat..so
>> it was decided that I should have an a esophogoscopy..and lo and
> behold
>> angiolipomas..they took them out ..and they were real little
> beasties..they
>> had little roots and all;_)...so I have been fairly good throat
> wise for a
>> while now..but am starting to have a few swallowing problems once
> more...so
>> at least my current Gp,s  know what it is and something can be
> done...
>>
>> Okey doke...onto the bowel...:-)
>> I had to have a colonoscopy as I was having uncomfortable
> heartburn and
>> reflux problems..and there was suspicion of an ulcer...and yes they
> found a
>> duodenal ulcer...but also found angiolpomas attatched to my bowel
> and lower
>> intestine..they could see it with  the little camera attatched to
> the
>> colonoscopy tube...so the nipped a few off...and yes they were
>> angiolpomas..and lipomas too.
>>
>> Now I,ll close this email of mine..it is rather getting to book
> size...so
>> sorry folks.
>>
>> The main thrust of this email in my mind is to let the ladies know
> that it
>> is a MISTAKE  to have a mastecomy if your breasts are painful..as
> it will
>> still come back fourfold..mine has..and these days  is just a
> painful as it
>> was before the surgery..PLEASE DON'T DO IT.
>>
>> At this time my GP has now got me on excellent medication for the
> pain of
>> DD..as I had got to the stage that I would not take anything.,.,I
> needed to
>> fight it myself ...that is fodder for  another email ..lol
>> Now I am waiting at this time for another angiogram to map the path
> of my
>> abdominal aortic aneurysm and my blocked renal artery to the left
> kidney..my
>> aneurysm is at danger point as regards bursting..and each day is
> like living
>> on a tight rope not knowing if I,ll see the end of the day,,that is
> the way
>> of these aneurysms..when they burst there is simply no
> recourse ..death is
>> swift...so I will be glad when the surgery for the graft  that
> takes place
>> ,,,not long now I hope as it is quite large...in the mean time I am
> rather
>> tired when I,m at the computor .and that is why you will not hear
> from me
>> much...but cannot miss 'my email news'...however I,m okay.
>>
>> So there you go..I have had DD all of my life...and it has been
> proven to be
>> hereditary in my family.we all have firm diagnosis  and we are a
> case study
>> for the UK research team...all samples and bloods went there about
> 4 and 1/2
>> years ago , and many of my forebears had diagnosed DD, and so it
> goes on...
>>
>> Nite nite lovely people.
>> Kay~K ( Australia )
>> xxx.
>>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>

#22183 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 10:50 am
Subject: Re: Re: Organ Infiltration of Dercums Disease from Kay~K.
myokenaustralia
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Hi there Mary Lou:-)
Gosh you have had a time of it...whew!
It does take a very patient radiologist to see the lumps and bumps...I have
found that usually I get the same radiologist..so that helps...
CT scans in my case show the angiolipomas/lipomas on the liver and kidneys
etc......and also of course  female type ultrasounds with an internal wand
.Then of interest is the angiogram...the lipomas show up as white shadows of
varing sizes and shape..not strongly but they do show.
I really feel that if the treating doctor or surgeon needs to know that you
have DD..and to follow through..on all of my referals from my GP to the
radiologists..he always used to put for example...'Patient has whatever..and
DD.
When my doctor puts patient has DD on the requests for radiology it is
amazing how many hoops the radiologist will go through in my case to try and
view the lumps., lol.

Cheers and thankyou for the kind words.
Kay~K.
----- Original Message -----
From: <chickie456789@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 5:47 PM
Subject: Re: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease
from Kay~K.


> Hello Kay,
>
> i have been reading your posts, and i am in awe of your  courage! i do
> believe we are sisters! i have been away, having back surgery. i  had
> discs L4, L5,
> and L5-S1 replaced, and the spinal stenosis taken care  of. i just
> returned
> home from the hospital. going thru a gabillion posts! i  was interested to
> read
> your take on the organ infiltration of DD. i believe this  is also
> happening
> to me. when i suggest it to my GP, all i get are weak smiles.  a few nods.
> and
> sent on my way. i have not yet been diagnosed with DD. and yes,  i am
> still
> working on finding a primary physician who will take my case on. i  will
> be off
> work for a few months recuperating from this surgery, and i will use  the
> time
> off wisely. ahhhh, i just live for projects, gets my blood flowing.
>
> so please post more...i am interested in finding out which  tests show the
> little beasties. all they have done for mine are the mammogram,  which
> showed
> nothing. my theory is, the docs who read these films  dont  know what they
> are
> looking for. i have had xrays, mri's only. no sonograms, CT  scans. i am
> unsure
> which direction to request my doc to  take.
>
>
> Mary Lou
>
>
>
> ************************************** See what's free at
> http://www.aol.com.
>

#22182 From: chickie456789@...
Date: Mon Apr 30, 2007 3:47 am
Subject: Re: Re: Organ Infiltration of Dercums Disease from Kay~K.
cherrychicklit
Offline Offline
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Hello Kay,
 
i have been reading your posts, and i am in awe of your courage! i do believe we are sisters! i have been away, having back surgery. i had discs L4, L5, and L5-S1 replaced, and the spinal stenosis taken care of. i just returned home from the hospital. going thru a gabillion posts! i was interested to read your take on the organ infiltration of DD. i believe this is also happening to me. when i suggest it to my GP, all i get are weak smiles. a few nods. and sent on my way. i have not yet been diagnosed with DD. and yes, i am still working on finding a primary physician who will take my case on. i will be off work for a few months recuperating from this surgery, and i will use the time off wisely. ahhhh, i just live for projects, gets my blood flowing.
 
so please post more...i am interested in finding out which tests show the little beasties. all they have done for mine are the mammogram, which showed nothing. my theory is, the docs who read these films  dont know what they are looking for. i have had xrays, mri's only. no sonograms, CT scans. i am unsure which direction to request my doc to take.
 
 
Mary Lou




See what's free at AOL.com.

#22181 From: "Jackie Hanan" <rubyjax@...>
Date: Mon Apr 30, 2007 6:37 am
Subject: RE: Re: Organ Infiltration of Dercums Disease from Kay~K.
rubyjax7
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Send Email Send Email
 

Hi Kay and Aub,….from what I have heard in order to use LDN you first have to go off all pain killers for about 3 weeks I think before you can use it. I have friends w/MS that are on it, and they are getting good results. But just like you said Kay there are some Dr’s who are not prescribing because they don’t either know about the low dose effects, or they’ve never heard of using it for other illnesses.

Kay that is fantastic it has worked so well for you. taking your dogs into the sea must be delightful.

Smiles, Jackie :-)

 

 

 

 

The other medication I am using with success to give me fluidity of

limbs..and movement without pain or restriction is Low Dose Naltrexone...not

to be confused with the high dose given to alchoholics and drug addicts.

This is how it came about;-

My doctor was oversease ( USA) at a drug conference...looking at

alternative, homeopathic, and new uses for old drugs..it was in the USA at

the conference that he heard about Low Dose Naltrexone....the dosage being

3-5mg for males..4.5 mg for females...it was being used with great success

for MS sufferers...and also for autism and chrons disease...and many

more,,,it DOES NOT cure any disease..it simply gies much more ease of

fluidity, and cuts down on the bad effects of disease..I can now walk for

quite a way..I now do at least a 1/2 kilometre morning nad 3/4 kilometre

evening..I  take my dogs into the sea at least once a week..I have fun!! i

could not walk without aids for 3 years prior to taking the drug...I am

doing things that were too long denied me with this insidious disease..I am

a great addy for the drug..LOL...but each to their own thing.

Low Dose Naltrexone works on the good endorphins...I take it in the evening

before bed..so that it can work on the good endorphins between 2 am and 4

am..which is when they are most active..it gives the good endorphins a

boost..so that it helps the immune system.

Sometimes I go for a week taking it during the day..gives my day a real

punch! And I love that:-))))))))

Here are some links that will describe the drug for you Aub...it may be of

use..I don,t know..everyone is an indivdual with indivdual needs...the

mainstream of doctors does not want to know about the drug..but there is a

group on Yahoo where the group owner has the names and phone numbers of

Doctors in the USA who will prescribe the drug...and also lists of

Compounding Chemists who dispense the drug...it has to be a compounded Low

Dose Naltrexone..as otherwise if made with fillers in the capsules it does

not work so the story goes..I have  compounding chemists in 2 other states

that dispenses it for Aussies when prescribed.

I should say that there is nothing illegal about the drug...just a different

take on meds;-)

Okay I,m off to make up some curry and onion and some tomatoe and parsley

sausages,,then I,m off to the walking tracks with my 3 french bulldogs..my

life is good...

And I should say Aub that my secret to a good state of mind and is really

simple...a litle personal..but simple..lol...I am a committed buddhist and

during my schooling about buddhism and before I took my vows as a buddhist

and boddisattva ,my Lama and some monk friends etc..gave me some great

teaching on meditation and  the ways.of buddhist meditation..and just in

case you think.."oh no..another  buddhist nut..."..lol....

I do not push the buddhist view on things ;-))Anyone can do buddhist

meditation..my favorite is 'sky gazing'...;)

But again..that is another episode...

Cheers Aub!

Kay~K.

 

 

 

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

From: "aubtsturgeon" <aubtsturgeon@yahoo.co.uk>

To: <Dercums_Disease@yahoogroups.com>

Sent: Monday, April 30, 2007 1:36 AM

Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from

Kay~K.

 

 

> 

> Kay~K,

> this is truly a story of coping with Dercums if I have ever seen one.

> Would you be happy to say what medicines you take, and how you built the

> mental attitude to cope as this could help many.

> Thanks for an in-depth post on your experiences.

> 

> Aubs

>

 

 

 

 

 

Yahoo! Groups Links

 

<*> To visit your group on the web, go to:

    http://groups.yahoo.com/group/Dercums_Disease/

 

<*> Your email settings:

    Individual Email | Traditional

 

<*> To change settings online go to:

    http://groups.yahoo.com/group/Dercums_Disease/join

    (Yahoo! ID required)

 

<*> To change settings via email:

    mailto:Dercums_Disease-digest@yahoogroups.com

    mailto:Dercums_Disease-fullfeatured@yahoogroups.com

 

<*> To unsubscribe from this group, send an email to:

    Dercums_Disease-unsubscribe@yahoogroups.com

 

<*> Your use of Yahoo! Groups is subject to:

    http://docs.yahoo.com/info/terms/

 


#22180 From: "Jackie Hanan" <rubyjax@...>
Date: Mon Apr 30, 2007 6:28 am
Subject: RE: Kay,......OT
rubyjax7
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Sure Kay….if you go to Yahoo groups and type in dercumsdiseasefor_women my group is listed right under this group. I just went there and was able to pull it up just by typing in Dercums disease in the search health groups.

That will be great if you want to join. :-)

Hugs, Jackie

 

 

 

-----Original Message-----
From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of IslandRetreat
Sent: Sunday, April 29, 2007 9:11 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] Correction.........[For the mods]

 

Hi there Jackie...

may I have the addy for the group:-)

I cannot find it.

To :-.....Myoken1@...

Cheers!

Kay~K.

 


#22179 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 6:07 am
Subject: Re: Re: Organ Infiltration of Dercums Disease from Kay~K.
myokenaustralia
Offline Offline
Send Email Send Email
 
Hi there Aub:-)
Okey dokey here is the info...BUT THIS IS NOT SAYING IT IS FOR EVERYONE..BE
WISE AND PLEASE TALK TO YOUR DOCTOR FIRST...

2 years ago my GP was non-plussed about what to give me for the pain of
DD...so he asked a collegue of his who is a specialist neurologist...as the
neurologist was up to speed with pain medications.
His suggestion was Amytriptyline ..85 mg daily...he uses it for cancer
patients..
Now Amytriptyline is a drug often used for anxiety..do not get confused with
that..it works really well as a pain medication also...one just needs to get
themselves used to the drug, because at first one feels a little
'trippy'..( to coin a phrase lol) ..but the sleepy/ dreamy  effect wears off
after a week or so..and then the drug works beautifully...definitely no
pain...in my case anyway.
The drug is being used by 3 other DD patients..2 in the UK..one in Sotland,
and myself..with a huge success rate..but the correct dosage must be
taken..I graduate mine ..I take 20 mg in the morning..and the balance at
night so that I get much needed sleep without wakeup calls.
Okay..
The other medication I am using with success to give me fluidity of
limbs..and movement without pain or restriction is Low Dose Naltrexone...not
to be confused with the high dose given to alchoholics and drug addicts.
This is how it came about;-
My doctor was oversease ( USA) at a drug conference...looking at
alternative, homeopathic, and new uses for old drugs..it was in the USA at
the conference that he heard about Low Dose Naltrexone....the dosage being
3-5mg for males..4.5 mg for females...it was being used with great success
for MS sufferers...and also for autism and chrons disease...and many
more,,,it DOES NOT cure any disease..it simply gies much more ease of
fluidity, and cuts down on the bad effects of disease..I can now walk for
quite a way..I now do at least a 1/2 kilometre morning nad 3/4 kilometre
evening..I  take my dogs into the sea at least once a week..I have fun!! i
could not walk without aids for 3 years prior to taking the drug...I am
doing things that were too long denied me with this insidious disease..I am
a great addy for the drug..LOL...but each to their own thing.
Low Dose Naltrexone works on the good endorphins...I take it in the evening
before bed..so that it can work on the good endorphins between 2 am and 4
am..which is when they are most active..it gives the good endorphins a
boost..so that it helps the immune system.
Sometimes I go for a week taking it during the day..gives my day a real
punch! And I love that:-))))))))
Here are some links that will describe the drug for you Aub...it may be of
use..I don,t know..everyone is an indivdual with indivdual needs...the
mainstream of doctors does not want to know about the drug..but there is a
group on Yahoo where the group owner has the names and phone numbers of
Doctors in the USA who will prescribe the drug...and also lists of
Compounding Chemists who dispense the drug...it has to be a compounded Low
Dose Naltrexone..as otherwise if made with fillers in the capsules it does
not work so the story goes..I have  compounding chemists in 2 other states
that dispenses it for Aussies when prescribed.
I should say that there is nothing illegal about the drug...just a different
take on meds;-)
Okay I,m off to make up some curry and onion and some tomatoe and parsley
sausages,,then I,m off to the walking tracks with my 3 french bulldogs..my
life is good...
And I should say Aub that my secret to a good state of mind and is really
simple...a litle personal..but simple..lol...I am a committed buddhist and
during my schooling about buddhism and before I took my vows as a buddhist
and boddisattva ,my Lama and some monk friends etc..gave me some great
teaching on meditation and  the ways.of buddhist meditation..and just in
case you think.."oh no..another  buddhist nut..."..lol....
I do not push the buddhist view on things ;-))Anyone can do buddhist
meditation..my favorite is 'sky gazing'...;)
But again..that is another episode...
Cheers Aub!
Kay~K.



----- Original Message -----
From: "aubtsturgeon" <aubtsturgeon@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 1:36 AM
Subject: [Dercums_Disease] Re: Organ Infiltration of Dercums Disease from
Kay~K.


>
> Kay~K,
> this is truly a story of coping with Dercums if I have ever seen one.
> Would you be happy to say what medicines you take, and how you built the
> mental attitude to cope as this could help many.
> Thanks for an in-depth post on your experiences.
>
> Aubs
>

#22178 From: "IslandRetreat" <Myoken1@...>
Date: Mon Apr 30, 2007 5:11 am
Subject: Re: Correction.........[For the mods]
myokenaustralia
Offline Offline
Send Email Send Email
 
Hi there Jackie...
may I have the addy for the group:-)
I cannot find it.
To :-.....Myoken1@...
Cheers!
Kay~K.
----- Original Message -----
From: "Jackie Hanan" <rubyjax@...>
To: <Dercums_Disease@yahoogroups.com>
Sent: Monday, April 30, 2007 11:34 AM
Subject: RE: [Dercums_Disease] Correction.........[For the mods]


> The women's group was set up for those who felt more comfortable talking
> about everything in a private forum. Not just about their private parts.
> Because this group and the other are open to anyone who passes by they can
> read anything that is posted. I just thought it might be nice to have
> another option. It had nothing to do with us being "grownups"; it had to
> do
> with privacy.
> I think there is room for as many DD groups we can get going if for
> nothing
> else,  than the exposure.
> On my group we have a variety of topics, and they aren't all about DD, but
> other everyday subjects that help us cope with living with a chronic
> illness, and the pain. Some of the subjects probably wouldn't be of
> interest
> to the guys, as we talk about our hubby's, and kids, much like what it
> would
> be if we belonged to a women's group in our communities.
> I just get the impression that this group has gotten the wrong impression
> and that may be why not too many has joined. I certainly did not mean to
> offend anyone by starting it.
> Sincerely..Jackie :-)
>
>  _____
>
> From: Dercums_Disease@yahoogroups.com
> [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of wee5peeps@...
> Sent: Sunday, April 29, 2007 1:31 PM
> To: Dercums_Disease@yahoogroups.com
> Subject: Re: [Dercums_Disease] For the mods
>
> You.... you... you said.... t... te.... tes..... I can't say it!
>
> Where are my smelling salts!
>
> Oh, boy, sorry, I should behave, I grew up with a pretty uninhibited
> upbringing.
>
> I remember one of my husband's co-workers, who had a boy the same age as
> our
> son, who was horrified we called his penis a... penis! Or worse, that he
> knew he was born by traveling from my uterus through my vagina, and out
> into
> the world. He nearly fainted when my husband told him that our son knew
> how
> babies got there in the first place, or that he watched A Baby Story with
> me
> at the age of 3.5. :)
>
> I get the power of language, but somehow I totally miss the issue of
> euphemisms, as if referring to something is somehow more acceptable by
> calling it by some different word. Thus starting the endless chain of
> words
> that mean something else. Leading my Mother in Law to have a laundry list
> of
> words that she replies by saying "I KNOW what you MEANT to say".
>
> Oy vey....
>
> Please, can we all agree that respectful body discussion here knows no
> boundaries? Parts is parts, and given that our parts all tend to be equal
> opportunity hoodlums.... may as well keep an open discussion going. I
> swear
> I won't faint.
>
> Crystal - who's been pregnant and given birth too many times to be as
> modest
> as perhaps she ought.
>
> On Apr 28, 2007, at 8:03 PM, Will I Am wrote:
>
>
>
> recent posts. Please, Kay, whatever makes you feel more comfortable, of
> course....Will - I - Am PS - Frankly, I was born with an undescended
> testicle and inguinal hernia. Both required surgical repair later, still
> at
> a very young age, and with the way Dercum's just loves that scar tissue, I
> can get pretty riled up just thinking about what might be going on when I
> get cramps in that area..............There, now I've started the
> embarrassing talk......
>
> <http://geo.yahoo.com/serv?s=97476590/grpId=1371922/grpspId=1705061589/msgId
> =22164/stime=1177815943>
>
>
>

#22177 From: "Sylvia" <afikaufman1@...>
Date: Mon Apr 30, 2007 3:29 am
Subject: Re:To Sylvia...OT
afikaufman
Offline Offline
Send Email Send Email
 
Hi Pam,
I am glad you have gotten the stress under control. You are right to
not want to disturb the aliens, I think they feed on stress,,,lol.
Our high temp was 86 today and we sweated while helping my son move
but showers are forcasted for the whole of next week. Oh well, that
is Texas for you; if you don't like the weather just wait, it will
change.
Take care,
Sylvia



--- In Dercums_Disease@yahoogroups.com, Pamela Harrison
<ozziespamela@...> wrote:
>
> Thanks Sylvia,
> It does seem like everything goes wrong at once. I have a good
umbrella though,lol.  The car will just have to wait. The repair
would come to $350 and I don't have it. I've decided not to stress
on it to much. Stress makes the aliens grow.
> Pamela
>
> ----- Original Message ----
> From: Sylvia <afikaufman1@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Sunday, April 29, 2007 6:22:20 PM
> Subject: [Dercums_Disease] Re:To Amy..OT
>
>
>
>
>
>
>
>
>
>
>
>
>
>             Dear Pam,
>
> When it rains, it pours and my umbrella usually has holes in it
too.
>
> I feel for you, I hope things improve very soon.
>
> Take care,
>
> Sylvia
>
>
>
>
>
>
>
>
>
>
>
> __________________________________________________
> Do You Yahoo!?
> Tired of spam?  Yahoo! Mail has the best spam protection around
> http://mail.yahoo.com
>

#22176 From: "Jackie Hanan" <rubyjax@...>
Date: Mon Apr 30, 2007 1:34 am
Subject: RE: Correction.........[For the mods]
rubyjax7
Offline Offline
Send Email Send Email
 

The women’s group was set up for those who felt more comfortable talking about everything in a private forum. Not just about their private parts. Because this group and the other are open to anyone who passes by they can read anything that is posted. I just thought it might be nice to have another option. It had nothing to do with us being “grownups”; it had to do with privacy.

I think there is room for as many DD groups we can get going if for nothing else,  than the exposure.

On my group we have a variety of topics, and they aren’t all about DD, but other everyday subjects that help us cope with living with a chronic illness, and the pain. Some of the subjects probably wouldn’t be of interest to the guys, as we talk about our hubby’s, and kids, much like what it would be if we belonged to a women’s group in our communities.

I just get the impression that this group has gotten the wrong impression and that may be why not too many has joined. I certainly did not mean to offend anyone by starting it.

Sincerely….Jackie :-)

 


From: Dercums_Disease@yahoogroups.com [mailto:Dercums_Disease@yahoogroups.com] On Behalf Of wee5peeps@...
Sent: Sunday, April 29, 2007 1:31 PM
To: Dercums_Disease@yahoogroups.com
Subject: Re: [Dercums_Disease] For the mods

 

You.... you... you said.... t... te.... tes..... I can't say it!

 

Where are my smelling salts!

 

Oh, boy, sorry, I should behave, I grew up with a pretty uninhibited upbringing.

 

I remember one of my husband's co-workers, who had a boy the same age as our son, who was horrified we called his penis a... penis! Or worse, that he knew he was born by traveling from my uterus through my vagina, and out into the world. He nearly fainted when my husband told him that our son knew how babies got there in the first place, or that he watched A Baby Story with me at the age of 3.5. :)

 

I get the power of language, but somehow I totally miss the issue of euphemisms, as if referring to something is somehow more acceptable by calling it by some different word. Thus starting the endless chain of words that mean something else. Leading my Mother in Law to have a laundry list of words that she replies by saying "I KNOW what you MEANT to say".

 

Oy vey....

 

Please, can we all agree that respectful body discussion here knows no boundaries? Parts is parts, and given that our parts all tend to be equal opportunity hoodlums.... may as well keep an open discussion going. I swear I won't faint.

 

Crystal - who's been pregnant and given birth too many times to be as modest as perhaps she ought.

 

On Apr 28, 2007, at 8:03 PM, Will I Am wrote:



recent posts. Please, Kay, whatever makes you feel more comfortable, of course....Will - I - Am PS - Frankly, I was born with an undescended testicle and inguinal hernia. Both required surgical repair later, still at a very young age, and with the way Dercum's just loves that scar tissue, I can get pretty riled up just thinking about what might be going on when I get cramps in that area..............There, now I've started the embarrassing talk......

 


#22175 From: Pamela Harrison <ozziespamela@...>
Date: Mon Apr 30, 2007 1:04 am
Subject: Re: Re:To Sylvia...OT
ozziespamela
Offline Offline
Send Email Send Email
 
Thanks Sylvia,
It does seem like everything goes wrong at once. I have a good umbrella though,lol.  The car will just have to wait. The repair would come to $350 and I don't have it. I've decided not to stress on it to much. Stress makes the aliens grow.
Pamela

----- Original Message ----
From: Sylvia <afikaufman1@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, April 29, 2007 6:22:20 PM
Subject: [Dercums_Disease] Re:To Amy..OT

Dear Pam,
When it rains, it pours and my umbrella usually has holes in it too.
I feel for you, I hope things improve very soon.
Take care,
Sylvia




Ahhh...imagining that irresistible "new car" smell?
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#22174 From: Pamela Harrison <ozziespamela@...>
Date: Mon Apr 30, 2007 12:57 am
Subject: Re: Re:To Amy..OT
ozziespamela
Offline Offline
Send Email Send Email
 
Hi Amy,
I have had a good weekend. Mostly hanging around home doing housework and gardening. Groomed both my dogs too. It is very warm (almost 90) here today and I am feeling better than usual. Got some sleep too. I wanted to plant my glad bulbs (40 of them) but it was just too hot by the time I got everything else done.
As it turns out, the part for my car is $251 and the labor will be another $100. I can't do it right now so I blacked out my high beams with duct tape. I just hope I don't get a ticket for driving without turn signals!
I hope you are doing as well as I  am today.
Hugs,
Pamela

----- Original Message ----
From: "3spitz@..." <3spitz@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, April 29, 2007 5:20:42 PM
Subject: Re: [Dercums_Disease] Re:To Amy..OT

Hi Pamela,
Gosh, I hope your weekend was better than your week!  You sounded absolutely drained, and with good reason!  Did you get to relax some?  I hope that you're feeling okay despite all of this "stuff" and that the car repair won't cost you a fortune... :( 
Here's to a better week!
Amy




Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.

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