Dercums_Disease : Messages : 26330-26359 of 29330

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:

You may not harass, abuse, threaten, or advocate violence against other members or individuals or groups.
You may not post content that is harmful to minors.
You may not post content that is obscene, otherwise objectionable, or in violation of federal or state law.
You may not add members to a group without their permission.
You may not use the group for commercial or advertising purposes.
You may not post content which infringes the intellectual property, privacy or other rights of third parties.
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.
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

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.
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.
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.
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

Keep your questions and comments relevant to the focus of the discussion group.
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!
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!
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.
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.)
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).
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.
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.
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.
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
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.
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.
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

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.)
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.
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:

Headers or any Subject, Date, From, Reply-To, To, information, nor any general salutations.
Entire posts! Keep your quoted lines down to 4-6 for each different issue you are addressing.
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.
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

Reply | Forward | Messages in this Topic (51)

#26358

From: Karen Krzeminski <kamperk06@...>
Date: Mon Sep 1, 2008 3:28 am
Subject: Dr. Karen?

aqua12062

Offline

Anyone know anything about this Marshall Protocol and could it help us? It's too complicated for
me to examine! I know we have some brilliant minds at here on our website so I pass to you...Dr. Karen, Phil etc., etc....

What is the Marshall Protocol?

The Marshall Protocol is a curative treatment for diseases having a TH1 type immune response. Patients having been diagnosed with one or more of a wide range of diseases have been successfully treated using this protocol. It works by enabling the immune system to destroy the intracellular bacteria that are thought to be the root cause of the illness. See About the Marshall Protocol and Why the Marshall Protocol makes sense

Will the Marshall Protocol work for my disease?

The specific disease diagnosis is not as important as the results of a D-Metabolites blood test along with clinical assessments by a knowledgable MD in determining whether you can be successfully treated with the Marshall Protocol. See Is the MP an applicable treatment for my disease?

How does the treatment work?

An ARB (angiotensin II receptor blocker) medication, Benicar �, is taken, and sunlight, bright lights and foods and supplements with vitamin D are diligently avoided. This enables the body�s immune system, with the help of small doses of antibiotics, to destroy the intracellular bacteria. It can take approximately one to three years to destroy all the bacteria. See Simple Explanations

How successful is this treatment?

Physicians have reported successfully treating their patients using the Marshall Protocol where other treatments have failed. Many Drs are now treating patients with the Marshall Protocol and more patients are starting.

Although to date there have been no formal clinical trials for this new treatment, there is an increasing amount of evidence supporting the bacterial cause for diseases having a TH1 type immune response and the method used in the protocol for destroying the intracellular bacteria is based on solid medical science. See Where can I find statistics about the Marshall Protocol?

If the Marshall Protocol is so good why is not used more widely?

New treatments for disease, especially those involving paradigm shifts in medicine, take a long time to become part of general practice. It took about thirteen years before Dr. Barry Marshall�s discovery of the bacterial cause of stomach ulcers before his antibiotic treatment become part of general practice. Coincidently, Dr. Trevor Marshall attended the same university and studied under the same instructors as Dr. Barry Marshall.

Furthermore it is more difficult to obtain acceptance of the Marshall Protocol because, like surgical operations, its efficacy and safety cannot be easily proven with double blind clinical trials. See Why isn't the MP being used by more doctors?

How would I know that it is working for me?

Your reaction to the protocol drugs will differ from the general population. For example, you may become photosensitive when taking Benicar. You will experience the effects of bacterial die-off when taking the antibiotics. Your experience will depend on the types of bacteria dying off and when and where they have invaded your body. See How can I tell if the MP is working for me?

D-metabolites blood tests and other tests will enable your doctor to objectively measure your progress. You will experience a gradual remission of your disease symptoms until you are symptom free! See What degree of healing is possible using the Marshall Protocol?

Who developed the Marshall Protocol?

The Marshall Protocol was developed over a period of about twenty years by Dr. Trevor Marshall, PhD, a medical research scientist, and Liz Marshall, a pharmacist and Trevor�s wife. Dr. Trevor Marshall applied the protocol first to himself to treat Sarcoidosis. The Marshall Protocol is partially based on the work of Lida Mattman, research scientist in microbiology. She was nominated for the Nobel Prize in medicine.

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

Be the filmmaker you always wanted to be�learn how to burn a DVD with Windows�. Make your smash hit

Reply | Forward | Messages in this Topic (57)

#26357

From: Fabric100@...
Date: Sun Aug 31, 2008 10:18 pm
Subject: Re: Amending Records

fabric102

Offline

Hi all!

Every state has laws regarding how much a doctor can charge you for a copy of your records. I fond a website that gives the allowed fees per state:

http://www.lamblawoffice.com/medical-records-copying-charges.html#Ohio

It says Ohio at the end but every state is listed. Most doctor offices, labs, testing facilities, etc. will fax a copy to another doctor's office free of charge. We often do this to get records from one doctor to another and avoid fees. One of my daughter's doctors has a very cooperative staff that will do this whenever we ask.

This is a great question to ask as you search for a new doctor--"what do you charge to provide a copy to me of my test results, etc."

About.com has a good article with links to others that detail getting and seeing copies of your records:

http://patients.about.com/od/yourmedicalrecords/a/getmedrecords.htm

You always have the right to read your records, except for those cases outlined in federal law regarding mental health (the statute excludes the right to review if reading the records are believed to cause you to do harm to yourself or another--however such a refusal must be in writing and then there is an appeal process), without charge. I believe this is federal law so a state cannot over-rule that. There should never be a charge for reviewing your records.

You are usually not entitled to read business type memos within a clinic, unless those memos were used directly to determine appropriate medical care for you.

The best bet is to review your records regularly

Another idea is to check with your pharmacist and obtain a record of all prescriptions issued in your name. I believe that most pharmacies are now tied into a central system that will show them prescriptions filled at other locations. This may only apply if the person filling the prescription used insurance. All federal insurance programs such as TriCare, CHAMPUS, VA, Medicare and Medicaid utilize such a system. All claims against your insurance information would go through your insurance company, so that is another way to be certain that someone isn't using your information to obtain medical care.

Hang in there!
Anne

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

#26356

From: Sherry Fox <shefox908@...>
Date: Sun Aug 31, 2008 2:14 pm
Subject: Re: Amending Records

shefox908

Offline

Hi Pamela,

I do not know if this varies from state to state but I have recently learned that you can go to where your lab where your blood was collected and sign a release form basically not holding them responsible for anything, and they will give you a copy of whatever dates you request. Not once have I been charged for a copy. However you may run across some lab techs that will tell you that they do not have any release forms. So I like to cut them off at the pass by either downloading a copy(s) off the computer form that particular hospital, or go to medical records first and simply ask them for a copy or two at which time you act dumb and tell them you need to take them home so that you can take your time and get the dates right--or whatever. A lot of times the lab will have a copy faxed over to them, but I have run across labs that stick to their lying guns and tell you that they have no forms, they are not able to have such a form faxed to them and so on. So I know know to go prepared.

We have all received medical reports of some type that have errors on them. From now on, I am making certain that if I should have to pay as little as a dime for a report that contains false information, you better believe that I will find a way to be reimbursed for my costs once I get the lie corrected--provided I 'm still alive by then.

Take Care,

Sherry

Pamela Harrison <ozziespamela@...> wrote:

Hi Sherry,
Wow! What a mess! I wouldn't know where to even start. I just wanted to commiserate with you. My doctor charges me $5.00 for every copy I request of anything, even lab results. I can't afford that too often, so I have no idea what my medical records say.
I hope you are able to get this mess straightened out and sue their pants off!
Hugs and spoons,
Pamela

#26355

From: Pamela Harrison <ozziespamela@...>
Date: Sat Aug 30, 2008 7:31 pm
Subject: Re: Amending Records

ozziespamela

Offline

Hi Sherry,
Wow! What a mess! I wouldn't know where to even start. I just wanted to commiserate with you. My doctor charges me $5.00 for every copy I request of anything, even lab results. I can't afford that too often, so I have no idea what my medical records say.
I hope you are able to get this mess straightened out and sue their pants off!
Hugs and spoons,
Pamela

#26354

From: "shefox908" <shefox908@...>
Date: Sat Aug 30, 2008 4:35 pm
Subject: Amending Records

shefox908

Offline

Thank you both Suzi and Anne for your quick response and suggestions
for my record problems.

Yes Anne I do live in Ohio and I have contacted Legal Aid, however
they have informed me that they do not deal with criminal,civil,or
malpractice cases. They did give me the Akron Bar Association where I
was referred to two attorneys that were not interested in the
case.However that was prior to this Dr leaving CCF, and prior to my
pain mang discharge being rescinded.

At the time that I spoke with the two attorney's, I knew that they
were not from a large firm and that once I mentioned the CCF just by
the change in their voices I was actually able to visualize how they
started to shrink and cower at the very thought of taking on this
world renowned hospital. I may try them again.

I wrote to so many local, state, government, federal, officials, that
I most definitely know that there are numerous investigations going
on. While I am aware that I am the victim and can be represented by
the prosecutor of whatever jurisdiction that this ends up at, I
strongly feel that this is going to end up as a class act case
because there is no way that I am the only one this pain doctor has
done this to.

I'm running out of time to be prepared for the hearing. What would be
a tremendous help is if someone can explain to me why a patient
cannot obtain their "internal records." i was reading the CCF'S
Patient Rights and Responsibilities where it states: You have the
right to see your medical record within the limits of the law. So is
that what they mean by not being able to see your internal records?
Then the CCF sent me a notice of privacy practices where it states:
You may not see or get a copy of information gathered for a legal
proceeding or certain research records while the research is ongoing.
That's just lovely.

Anne if you could find out more from your son I would so very much
appreciate it. If anyone else out there can give some advice as well
I certainly would appreciate it as well.

Hey, how much you want to bet that the CCF has been reading these
posts about this problem?

Thanks,

Sherry

#26353

From: Fabric100@...
Date: Fri Aug 29, 2008 8:07 pm
Subject: Re:Amending Medical Records

fabric102

Offline

Dearest Sherry,

Oh, My Dear, I wish you were close by as I would brew you a nice cup of herbal tea, butter up a slice of homemade bread and give you a hug. What a hideous ordeal for you!

I just read your report after a long, taxing and physically painful day so I am not sure I am reading it all correctly. I'll definitely think this one through and see if I can do some research for you. Do you live in Ohio? Just asking because my son is in his medical residency in Ohio and he might be able to do some research for you as well. Each state is different as to bureaucracy. But, you have been the victim of 'medical identity theft' which is a punishable crime for both the physician and the individuals who assumed your 'medical identity'.

I'll let you know what I find out. Yes, some doctors will stick together and you can be certain that any clinic involved has a whole group of lawyers trying to sort this mess out. The entire clinic is liable for this physician's actions (if he is on staff).

Big (but gentle because I'm a mass of bruises) hugs,
Anne

Get the MapQuest Toolbar. Directions, Traffic, Gas Prices More!

Reply | Forward | Messages in this Topic (3)

#26352

From: Suzi More <suzimore92@...>
Date: Fri Aug 29, 2008 4:26 am
Subject: Re: Amending Medical Records

suzisblue

Offline

Dear Sherry,

I know you don't want to hear this right now but your are not alone with this kind of problem.

My best friend, has an IgIg deficiency and was so weak at one point several months back

that her primary was so worried about her that she told her to wait till the end of office hours

(she had been in that doctor's office for an appointment) and she drove her to the hospital and

had her sign herself in. Not through the emergency department and because it was not preauthorized,

the hospital visit bill came to over 30,000 and the insurance does not want to pay.

What was worse was that instead of giving her tests for her weakness and fatigue, the primary

thought she was in a state of depression and put her in the mental ward where she had her purse stolen

and they wouldn't give her any kotex, I had to go to the drugstore and bring them to her as well as go

to the doctor's office and pick up the car.

This is why I tell you this story, she was mismanaged by her neurologist for years and that primary

mentioned to her a few times that she should tell the neuro to tweek the meds, well, being teachers in

NJ, our health plans changed, she had to get all new doctors which turned out to be a blessing.

Her most immediate problem was the over medication from the neuro she'd had some ten or more years.

The new neuro was very upset and it took a couple of months to get her off a really serious medicine that

she had been on for migraines which may have done a lot of damage, she had been out of work ten months

last year, I think she is going back next week the same as I am and I think she may make it through the year

if she is careful and proactive with her situation.

This is what she learned.

1. They will make it very hard for you to get records if they think you are up to something, she was

able to get a lot of these records by getting the new doctors to request them

2. Doctors will stick together and they do not like to talk against other doctors.

3. My friend has a Mentor from the Immune Society that she contacted and this mentor actually has a lawyer

that she brings to her doctor visits. The mentor had originally sued a school system that fired her because she

was sick and you guessed it, she won the case.

I have only told you this because I have been hearing daily horror stories from my best friend and I feel for you

and in my heart I agonize because unless people who come down with autoimmune diseases are able to find

some kind of true advocates to help us, we, who are already at the bottom will just be crushed the system and

the people who are in power.

Don't give up hope. She had one doctor changing her records for the purpose of getting her a special IV

that she needed monthly and she had no idea who's name it was going under.

The incorrect records and insurance claims and diagnoses are so prevalent, you have to check every thing.

Every time I see a doctor, I have my chart and any updates he or she has made on them at my visit and then

I get the copies of every bloodwork or test ordered. I have done this for 15 years and I could care less if this

is an inconvenience to them or not but if I don't get it grom the specific doctor, I go to the records department at

my Medical gtoup and par the records specialist to find the records I want and I pay that 10 ro 20 cents or more

for every page.

At this point, I used to keep every page in files and then I got big black 3 hole binders with

plastic top loaders in them so I could start to put everything in chronological order. Then I got a wonderful new

piece of equipment at Staples, a comb binding machine to bind the records in books. I have started to go through

everything I have now and am getting ready to put all my records in smaller bound books by the years the tests

and charts came from.

You have the right to your records, you or your insurance have paid these healthcare professionals for the services

and you need to have this documentation for your own protection. If the people who you have trusted all along for

your most important asset, your health and life do not want to comply with regulations and rules you will need to

get some real legal help.

One of the things you asked about in your letter was the records for the meds, unless you are getting the meds from

the doctors as samples, then you must have taken or had scripts called in to the pharmacy, you must always use the

same pharmacy and develop a rapport with the pharmacists there. Then you can ask them, and it is your right, for

a print-out of the last year's prescriptions that you had, they do this so you can use the info in your tax return.

Then, I think, you need to step back, go watch some television or listen to some music and relax and forget everything

for a few hours. Since I work with music every day of the week, I like to do something quiet. I play several games of

Snood or Solitaire on the computer and then go to sleep.

Sometimes we think so much and fret so much that we can't get our acts together. If you step back and think of something

else or meditate or practice an instrument or have some craft project to focus on for a few hours, it really helps us to go

back to the problem. I know the old cliche is to paraphrase the Albert Eintein saying:

"You cannot solve a problem with the same mind that it came from." but it's true, going away from the problem, not stewing

over it constantly, forgetting for a few hours here and there will help you to replenish your mental energy.

And having a really good friend to talk to every day helps. you can email me anytime. Remember, unless there is some healthy

person on these message boards just reading out of curiosity, we are all in this same boat on this same rugged sea and there

are many storms ahead and behind us already.

Suzi

----- Original Message ----
From: shefox908 <shefox908@...>
To: Dercums_Disease@yahoogroups.com
Sent: Thursday, August 28, 2008 9:50:58 PM
Subject: [Dercums_Disease] Amending Medical Records

I have a problem and it is big. I know that I have not been around
much for the last two months and I would have to write a book as to
why. Briefly, my pain mang doctor falsified info about me, as well as
having someone else's bld. ran as my bld for a drug screen, serum
test resulting in my discharge in the pain mang prog at the CCF and
all of it's many affiliates.

Again, I must leave out so much of his plot and my discovery of this
foreign doctor's evil misdoings in order to stay on track and let you
know where I am at now. After notifying my congressman, three
senators,FBI, a lieutenant to make a police report, all four major TV
networks, Public Inquiries (State Medical Board of Ohio), two
ombudsman's from separate locale's from where he practiced--what a
big #+^ joke they are--nothing happened. Now mind you, I had already
called and left messages with numerous CCF mang officials, but
nothing.

While all of this was going on I had learned that one of the
senator's had passed along copies of the so so much documentation
that I somehow managed to gather to the judge that I will go before
in Sept or Oct as I am to be scheduled right away for my SSD hearing.
Then I was told that this judge is continuing to gather further info
about regarding the matter. Government affairs at CCF was notified,
then Health Care Fraud and who knows who else. Clearly, there were
investigations in the picture, maybe even more so as the doctor came
from the middle east. It was also common sense that this doctor who
just happened to be the medical director of pain mang and surgical
specialties at the hosp where I saw him and done this type of thing
before as he pulled it off with the utmost confidence and just the
right people in different depts to cover for him and had the play
dumb act down.

While looking at the big picture is right and a must, the little guy
gets overlooked whether they are now really suffering in pain or not.
So I began getting attention by mailing one of my former surgeons a
copy of this pain doctor using this surgeons name in order to have
some lab work done. Then I showed my scleroderma doc where the pain
doc had gotten into MyChart and had the vicodin and ms contin put
under his name--my sclero doc doesn't have a licence to rx morphine.
My sclero doc believed me once I showed him a stack of papers and
rx'd me vicodin 7.5(1)every 6 hrs. Finally, after weeks of nothing I
had some relief from this constant pain, and he doubled my lyrica to
150 mg as well. Time to have a little fun and push things along.

I made dozens of copies of everything I had, put it in x-tra lg
envelopes and handed them out to all of my many, many CCF doctors
along with a plea for their help. Within one day I was mailed
(certified) that DR _ _lama has decided to pursue other professional
opportunities outside of CCF 9/1/08. Then today I get a call from one
of the ombudsman informing me that my discharge from the pain mang
prog has been rescinded and I shall receive a letter of conformation
in the mail.

Here's where I could use some help. This has taken so much out of me.
I nearly had a breakdown at first but got through it. I have no trust
in CCF and have no intentions of seeing a pain doctor there. My
records are the same. Every time I call a pain clinic they want my
records. But my records are now garbage. I am exhausted from what all
I have been through and why should I get stuck with cleaning up his
mess? Some of you guys are really good at this kind of thing. See
here's the deal, we are talking about lab records, medical room
records, that predate the summer of 08'. Then there is a patients
record so to speak that I have never heard of until one was
accidentally put in the records folder of mine and I got it. It's
called an internal record. Like when one doctor e-mails another doc
about the pt. In my case, my pain doc e-mailed the chairman that I
was taking 50mg ms contin bid instead of 15mg ms cont bid, plus a
bunch more lies. How am I supposed to request an amendment of my
records when they want detail of each lie in question, when they
won't divulge the records or going through records that can be
accessible, date back to 9/06 and I'm now learning he was not being
truthful all along.

I am just so tired now. When I questioned about my screwed up records
this jerk doctor left me with, the reply I got was "now that's a very
delicate area."

This disease has stripped me of everything except my name and my
word. I would like to leave CCF and take what little I have left with
me, and to another pain linic.

In need of advice,

Burned Out Sherry

Reply | Forward | Messages in this Topic (3)

#26351

From: "shefox908" <shefox908@...>
Date: Fri Aug 29, 2008 1:50 am
Subject: Amending Medical Records

shefox908

Offline

I have a problem and it is big. I know that I have not been around
much for the last two months and I would have to write a book as to
why. Briefly, my pain mang doctor falsified info about me, as well as
having someone else's bld. ran as my bld for a drug screen, serum
test resulting in my discharge in the pain mang prog at the CCF and
all of it's many affiliates.

Again, I must leave out so much of his plot and my discovery of this
foreign doctor's evil misdoings in order to stay on track and let you
know where I am at now. After notifying my congressman, three
senators,FBI, a lieutenant to make a police report, all four major TV
networks, Public Inquiries (State Medical Board of Ohio), two
ombudsman's from separate locale's from where he practiced--what a
big #+^ joke they are--nothing happened. Now mind you, I had already
called and left messages with numerous CCF mang officials, but
nothing.

While all of this was going on I had learned that one of the
senator's had passed along copies of the so so much documentation
that I somehow managed to gather to the judge that I will go before
in Sept or Oct as I am to be scheduled right away for my SSD hearing.
Then I was told that this judge is continuing to gather further info
about regarding the matter. Government affairs at CCF was notified,
then Health Care Fraud and who knows who else. Clearly, there were
investigations in the picture, maybe even more so as the doctor came
from the middle east. It was also common sense that this doctor who
just happened to be the medical director of pain mang and surgical
specialties at the hosp where I saw him and done this type of thing
before as he pulled it off with the utmost confidence and just the
right people in different depts to cover for him and had the play
dumb act down.

While looking at the big picture is right and a must, the little guy
gets overlooked whether they are now really suffering in pain or not.
So I began getting attention by mailing one of my former surgeons a
copy of this pain doctor using this surgeons name in order to have
some lab work done. Then I showed my scleroderma doc where the pain
doc had gotten into MyChart and had the vicodin and ms contin put
under his name--my sclero doc doesn't have a licence to rx morphine.
My sclero doc believed me once I showed him a stack of papers and
rx'd me vicodin 7.5(1)every 6 hrs. Finally, after weeks of nothing I
had some relief from this constant pain, and he doubled my lyrica to
150 mg as well. Time to have a little fun and push things along.

I made dozens of copies of everything I had, put it in x-tra lg
envelopes and handed them out to all of my many, many CCF doctors
along with a plea for their help. Within one day I was mailed
(certified) that DR _ _lama has decided to pursue other professional
opportunities outside of CCF 9/1/08. Then today I get a call from one
of the ombudsman informing me that my discharge from the pain mang
prog has been rescinded and I shall receive a letter of conformation
in the mail.

Here's where I could use some help. This has taken so much out of me.
I nearly had a breakdown at first but got through it. I have no trust
in CCF and have no intentions of seeing a pain doctor there. My
records are the same. Every time I call a pain clinic they want my
records. But my records are now garbage. I am exhausted from what all
I have been through and why should I get stuck with cleaning up his
mess? Some of you guys are really good at this kind of thing. See
here's the deal, we are talking about lab records, medical room
records, that predate the summer of 08'. Then there is a patients
record so to speak that I have never heard of until one was
accidentally put in the records folder of mine and I got it. It's
called an internal record. Like when one doctor e-mails another doc
about the pt. In my case, my pain doc e-mailed the chairman that I
was taking 50mg ms contin bid instead of 15mg ms cont bid, plus a
bunch more lies. How am I supposed to request an amendment of my
records when they want detail of each lie in question, when they
won't divulge the records or going through records that can be
accessible, date back to 9/06 and I'm now learning he was not being
truthful all along.

I am just so tired now. When I questioned about my screwed up records
this jerk doctor left me with, the reply I got was "now that's a very
delicate area."

This disease has stripped me of everything except my name and my
word. I would like to leave CCF and take what little I have left with
me, and to another pain linic.

In need of advice,

Burned Out Sherry

Reply | Forward | Messages in this Topic (3)

#26350

From: Sherry Fox <shefox908@...>
Date: Thu Aug 28, 2008 10:43 pm
Subject: Re: Re: Anyone experience this??

shefox908

Offline

Oh my God!

I wouldn't count on going to work tomorrow then. I too have only had one and that was prior to being dx'd with DD. Once I got home I slowly began to feel so miserable from every single area that was massaged that I called the therapist and asked him why I felt like this and what should I do. He was totally puzzled as he informed me that he usually goes much deeper but didn't this time because it was my first massage and I had already told him how awful I had been feeling. This was maybe five years ago.

So the therapist told me to take a warm bath in Epsom's salts to help relieve all the muscle pain and as for the nausea I was experiencing, he told me that it was from all those toxins being released from my tissues and to drink plenty of water to flush them out. That was my first and last massage. I feel so sorry for you if you have this done. It will be an experience that you will never forget.

With My "Deepest" Regrets,

Sherry

Pamela Harrison <ozziespamela@...> wrote:

Suzi wrote:
Today, I am going for a "complimentary" deep muscle massage at my Medical Group.they opened a new spa with a massage therapist, a reiki, a cosmotologist and manicurist and pedicurist. They have given a number of comp tickets to the doctors to give their patients in order to drum up business but I am a little worried about this because I have never had a maddage in my life and this may or may not have an effect on my body. I will bring literature as usual.

Hi Suzi,
You may find deep muscle massage too painful to handle. Be sure to tell the massage therapist to avoid your tumors!
Pamela

---

#26349

From: Suzi More <suzimore92@...>
Date: Thu Aug 28, 2008 9:46 pm
Subject: Re: [Dercumhs_Disease] Re: Anyone experience this??

suzisblue

Offline

I used the excuse that my Rheumatologist was running late and cancelled early in the day,

I am going to go next week and bring the materials for this therapist to read and see

what his opinion on this may be. Meanwhile, I had a mamgram today and saw the gyno's

nurse practitioner because I had to get the prescription for the mamo but, two days ago,

I thought I was getting a urinary track infection because I was spotting blood in my urine.

When she looked, it was up in the uterus. I am going to get an utrasound next Thursday

both types on the pelvis and she will discuss with my gynocologist what she saw today.

The last D and C was two years back and she took out 17 polyps so maybe they've all

grown back. Also, when I saw the Rheumatologist today, we cut back on the Noni and

the Doxycycline because he felt the liver functions were a little high but one good thing,

the D3 was normal (I usually take 3000 units daily) and he cut me back to 1000 a day

till we see the next blood work. Another thing, I started Tramadol last week and it really

helps, I started with one a day but the rheumatologist said I could go to two because I

am going to work next week and I am really scared of the pain first thing in the morning

when I have to face first and second graders.

Suzi

----- Original Message ----
From: Karen Krzeminski <kamperk06@...>
To: dercums_disease@yahoogroups.com
Sent: Thursday, August 28, 2008 10:24:54 AM
Subject: RE: [Dercums_Disease] Re: Anyone experience this??

"Today, I am going for a "complimentary" deep muscle massage at my Medical Group"

Suzi...I don't know about you but I am HURTING WHOLE-HEARTEDLY awful pain after my doc pushes around on my tumors! I would NEVER be able to do a massage, let alone a DEEP muscle massage. I hope you're okay afterwards!
Karen K
LHC., AZ

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

See what people are saying about Windows Live. Check out featured posts. Check It Out!

Reply | Forward | Messages in this Topic (1)

#26348

From: Pamela Harrison <ozziespamela@...>
Date: Thu Aug 28, 2008 4:43 pm
Subject: Re: Re: Anyone experience this??

ozziespamela

Offline

Suzi wrote:
Today, I am going for a "complimentary" deep muscle massage at my Medical Group.they opened a new spa with a massage therapist, a reiki, a cosmotologist and manicurist and pedicurist. They have given a number of comp tickets to the doctors to give their patients in order to drum up business but I am a little worried about this because I have never had a maddage in my life and this may or may not have an effect on my body. I will bring literature as usual.

Hi Suzi,
You may find deep muscle massage too painful to handle. Be sure to tell the massage therapist to avoid your tumors!
Pamela

---

#26347

From: "Teri" <datguise@...>
Date: Thu Aug 28, 2008 4:43 pm
Subject: Re: Anyone experience this??

jazmine_katz

Offline

Hello Karen and Suzi

I must agree with you Karen. I would never have this done as I beleive
it would acutually cause lump growth and lots of unbearable pain.  I'm
saying this as experience has taught me not to aggravate or at least as
little as possible.

Hugs to all

Teri
--- In Dercums_Disease@yahoogroups.com, Karen Krzeminski <kamperk06@...>
wrote:
>
> "Today, I am going for a "complimentary" deep muscle massage at my
Medical Group"
>
> Suzi...I don't know about you but I am HURTING WHOLE-HEARTEDLY awful
pain after my doc pushes around on my tumors! I would NEVER be able to
do a massage, let alone a DEEP muscle massage. I hope you're okay
afterwards!
> Karen K
> LHC., AZ Support research for Dercums Disease/Adiposis Dolorosa @
www.lipomadoc.org
>
>
>
>
>
>
> _________________________________________________________________
> See what people are saying about Windows Live. Check out featured
posts.
> http://www.windowslive.com/connect?ocid=TXT_TAGLM_WL_connect2_082008
>

#26346

From: Karen Krzeminski <kamperk06@...>
Date: Thu Aug 28, 2008 2:24 pm
Subject: RE: Re: Anyone experience this??

aqua12062

Offline

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

See what people are saying about Windows Live. Check out featured posts. Check It Out!

#26345

From: Suzi More <suzimore92@...>
Date: Thu Aug 28, 2008 10:25 am
Subject: Re: Re: Anyone experience this??

suzisblue

Offline

Behind my inner right thigh I have a new lump that is sizable and some pain, I already have scheduled a surgery for the first week of November for another four or five lipomas in my right abdomen, I'm hoping if he gets the three or four in front of it, he will get to the worst one which is the deepest and hurts the worst.

I can get him to do one side at a time so that if I show him the tumor behind the knee and it bother's me enough, he might go in there too. This guy does a lot of surgeries in one day and I don't want to bring up anything new unless it is easy. The last time I saw him he did take an extra one out from my inner thigh the size of a large grape but it wasn't in a muscle or anything it was just under the skin. But that one hurt the worst of all the sites in my recovery.

Today, I am going for a "complimentary" deep muscle massage at my Medical Group.they opened a new spa with a massage therapist, a reiki, a cosmotologist and manicurist and pedicurist. They have given a number of comp tickets to the doctors to give their patients in order to drum up business but I am a little worried about this because I have never had a maddage in my life and this may or may not have an effect on my body. I will bring literature as usual.

Suzi

----- Original Message ----
From: "jhelai9@..." <jhelai9@...>
To: Dercums_Disease@yahoogroups.com
Sent: Saturday, August 23, 2008 3:13:56 PM
Subject: Re: [Dercums_Disease] Re: Anyone experience this??

Something else is happening to me and I wondered if anyone else has had this experience.Behind my knee on my right leg I have had bouts where it hurts like heck and I cant move it.I dont know if this is a lump pressing on a muscle of tendon or something more serious.I have gotten a cane to help me walk. Also my hip on the same side gives out or is severly painful..Anyone have thios same thing?? I believe the Dr thinks I am faking..I may just be paranoid about that just am tired of pain AND by the way I dont notice any difference taking the doxycycline except in the restroom(not easy to go anymore)...I upped my Neurontin to 1200 mgs aday too now..And my appetite is going away.I just dont feel like eating anything(except tomatoes) and they upset my tummy...but I still crave them..weird whats happening to me.I also am having some pain and weakness in the thigh muscle on the right leg..Just want answers as to what is happening to me...

It's only a deal if it's where you want to go. Find your travel deal here.

#26344

From: kmabba <kmabba54@...>
Date: Wed Aug 27, 2008 9:24 pm
Subject: Re: Re: Anyone experience this??

kmabba54

Offline

I haven't got any lumps yet but I have the same palm red and white markings. So did my mom and so does my daughter. The 3 of us also have the same bright red on the back of the heels of our feet. Something genetic do you suppose? My daughter has recently developed her first very painful lipoma and will have it removed to find out if she has Dercums too. I pray that she doesn't.

Karen

----- Original Message ----
From: placidcharmer <placidcharmer@...>
To: Dercums_Disease@yahoogroups.com
Sent: Wednesday, August 27, 2008 10:28:22 AM
Subject: [Dercums_Disease] Re: Anyone experience this??

I experience the same thing. I have dark pink and white palms. I
also noticed that the fat pads between my knuckles swell with the
pressure changes in the weather. I also noticed that my fingers
swell up and get stiff when this happens (very fumbly) With the
tropical storm Fay that just came through our area; I am extremely
sore in my right hand. I also noticed that the cuticles on that same
hand are red.

--- In Dercums_Disease@ yahoogroups. com, Tami <ladydubois@ ...> wrote:
>
>
>
> I have lumps in my finger joints and on the top of my hands. My
palms, also, stay very red with white spots. How many others have
this problem? Tami
>
>
> --- On Mon, 8/18/08, Karen Herbst <kaherbst@.. .> wrote:
>
> From: Karen Herbst <kaherbst@.. .>
> Subject: Re: [Dercums_Disease] Anyone experience this??
> To: Dercums_Disease@ yahoogroups. com
> Date: Monday, August 18, 2008, 8:04 AM
>
>
>
>
>
>
>
> Do they have a color or overlying vessels?
>
>
> On Sun, Aug 17, 2008 at 2:59 PM, elaine103056 <jhelai9@aol. com>
wrote:
>
>
>
>
>
>
> Ok I thought at first I was crazy but I am finding mini lumps in
the
> fingers..Anyone else have this happen?? Have you found mini lumps
in
> the fleshy part underneath your fingers?
>

#26343

From: "Sharon" <skippy@...>
Date: Wed Aug 27, 2008 7:24 pm
Subject: Re: Deep pain in arms and legs and need some advice

skippyshaz

Offline

Hi Elaine,sorry for the post being very delayed, only just got a few
minutes to get on here, with it being the holidays.  I just wanted to
add my two penneth as they say - I am sitting here with very deep
throbbing pains in my thighs.  Yes, I have hundreds of lipomas on both
thighs, but this pain is a deep throb, like pulsing and makes you want
to 'yelp'  Is that what you are experiencing?  I get it frequently, and
have to make sure I take my pain meds regularly, but this is such an
excruciating pain that they don't take the pain away.
I am trying not to get into a flare at the moment and think it's all
related as my body is so tired out with the summer holidays and just
needs to 'chill' for a few days.
Bye for now
Gentle hugs
Skip

--- In Dercums_Disease@yahoogroups.com, "elaine103056" <jhelai9@...>
wrote:
>
> Does anyone else get deep pain in your arms and legs? This kept me
> awake for two days..I sleep for a bit after taking the pain pills but
> not when I should be sleeping..Its almost like a cramp. Is this DD
> related?? Also I told my Dr that I do not want the cortisone shots he
> wants to give me in my knees and hip as I am afraid it will cause
> further pain...Anyone have any suggestions for me?? The arthritis is
> bad and my knees and hip totally give out.If it wasnt for the wall I
> wouldnt have been able to walk a few days ago.
>

Reply | Forward | Messages in this Topic (7)

#26342

From: "placidcharmer" <placidcharmer@...>
Date: Wed Aug 27, 2008 2:34 pm
Subject: Re: Anyone experience this??

placidcharmer

Offline

I have lipomas on both sides but the ones on my right seem to be the
ones acting up the most.  I also have 2 extremely large ones on each
side under my breasts.  My acupuncturist says that the one on my left
represents my spleen and the one on my right is my liver.  She said
that when they swell that they are working in conjuction of my orgins
not working properly.  She said that the pain in my ulner nerve on my
right side is the small intestine meridian.  I don't know if Dr.
Herbst has checked out the acupuncture meridians and the growth of
our lumps.  With just reading about where all of our pains are I find
it very interesting that mine coinside with these points.  My
acupunturist is as well.  My "painful" lumps are mainly on my right
side.

--- In Dercums_Disease@yahoogroups.com, Suzi More <suzimore92@...>
wrote:
>
> All of my past surgeries in my abdomen have been on my right side,
> one large tumor the size of an egg removed several years back,
> last February four smaller, the size of golf balls,�two last April,
> the size of olives plus a cyst and one in my right thigh, and I
have
> a surgery scheduled for this November for one that�is very deep and
> growing and causing pain from time to time. There are tumors in the
> left side of the abdomen but they are not giving me the pain the
others did.
> Also, I had the tumors in bothe ankles removed in a May surgery,
2007
> and they were both the size of my thumbs but the left was larger.I
have never
> forgotten how much pain I had in those ankle, I have never
forgotten how
> I could not climb a stair for over six years because of them and I
was
> misdiagnosed with arthritis, pseudogout and edema. I will never
forget
> how I was called a "hypochondriac."
> Suzi
>
>
>
> ----- Original Message ----
> From: "jhelai9@..." <jhelai9@...>
> To: Dercums_Disease@yahoogroups.com
> Sent: Sunday, August 24, 2008 10:22:16 AM
> Subject: Re: [Dercums_Disease] Re: Anyone experience this??
>
>
>
>
>
>
>
> ________________________________
> It's only a deal if it's where you want to go. Find your travel
deal here.
> I guess that may be part of why my right side is having more
problems then my left..Wonder if Dr Herbst has noticed this in her
research as well??
>

#26341

From: "placidcharmer" <placidcharmer@...>
Date: Wed Aug 27, 2008 2:28 pm
Subject: Re: Anyone experience this??

placidcharmer

Offline

I experience the same thing.  I have dark pink and white palms.  I
also noticed that the fat pads between my knuckles swell with the
pressure changes in the weather.  I also noticed that my fingers
swell up and get stiff when this happens (very fumbly)  With the
tropical storm Fay that just came through our area; I am extremely
sore in my right hand.  I also noticed that the cuticles on that same
hand are red.

--- In Dercums_Disease@yahoogroups.com, Tami <ladydubois@...> wrote:
>
>
>
> I have lumps in my finger joints and on the top of my hands. My
palms, also, stay very red with white spots. How many others have
this problem? Tami
> ��������
>
> --- On Mon, 8/18/08, Karen Herbst <kaherbst@...> wrote:
>
> From: Karen Herbst <kaherbst@...>
> Subject: Re: [Dercums_Disease] Anyone experience this??
> To: Dercums_Disease@yahoogroups.com
> Date: Monday, August 18, 2008, 8:04 AM
>
>
>
>
>
>
>
> Do they have a color or overlying vessels?
>
>
> On Sun, Aug 17, 2008 at 2:59 PM, elaine103056 <jhelai9@aol. com>
wrote:
>
>
>
>
>
>
> Ok I thought at first I was crazy but I am finding mini lumps in
the
> fingers..Anyone else have this happen?? Have you found mini lumps
in
> the fleshy part underneath your fingers?
>

#26340

From: Pamela Harrison <ozziespamela@...>
Date: Mon Aug 25, 2008 5:10 pm
Subject: Re: Re: Doxycycline and stomach ache doh I forgot important point

ozziespamela

Offline

Thanks Aubrey,
With my insurance, I think I'm stuck with whatever generic my pharmacy carries, but that is good information to have. This is my last day on Doxycycline, thank goodness! It kills the probiotics I am drinking as fast as I can swallow and I just can't deal with the yeast overgrowth!
Pamela

#26339

From: "aubtsturgeon" <aubtsturgeon@...>
Date: Mon Aug 25, 2008 3:05 pm
Subject: Re: Doxycycline and stomach ache doh I forgot important point

aubtsturgeon

Offline

This is really really important, I know I mentioned it in my progress
ages ago but forgot about it until now hehe.

There are several manufacturers of Doxycycline, and I have had the
fortunate or unfortunate situation of having to use the drug from two
different manufacturers.

What is interesting is that one of those manufacturers' Doxycycline
caused severe stomach problems beyond the taking at seperate times to my
other drugs.
The reaction was equal to that of the worse NSAID anti-inflammatory
drugs.
But the strange thing, the other manufacturer I am fine with.

So, if possible it might make sense to see if you can try an alternative
manufacturer as it solved my reaction.
The one that works best for me is Actavis,  while the one I had problems
on was Chanelle Medical

Cheers
Aubs

--- In Dercums_Disease@yahoogroups.com, Pamela Harrison
<ozziespamela@...> wrote:
>
> Aubrey wrote:
> Once I made sure that there was a minimum of 1 hour gap between taking
> Doxycycline and other medication, my stomach problems went away.
> I also take it on an empty stomach.
>
>
> I have been separating the doxy from all my other meds by several
hours. I can't tolerate it on an empty stomach at all. I get very woozy
and then vomit within a half hour of it. There's no way I could handle
this long term!
> Pamela
>

#26338

From: Sherry Fox <shefox908@...>
Date: Mon Aug 25, 2008 2:17 am
Subject: Re: Re: Anyone experience this??

shefox908

Offline

The very same here.

Sherry

Pamela Harrison <ozziespamela@...> wrote:

Karen wrote;
My angio's seem to grow on the left side of my body first, then the right side gets them a bit afterwards. It is tremendously STRANGE but it's how it happens! Maybe because I'm a lefty, I don't know! LOL!!!

Anyone else notice this type of pattern??

Hi Karen,
Yes, mone gereally show up first on my left side and then appear in the same place on the right side of my body. I am very right handed, so I don't think that has anything to do with it.
Pamela

#26337

From: Pamela Harrison <ozziespamela@...>
Date: Sun Aug 24, 2008 11:30 pm
Subject: Re: Doxycycline and stomach ache

ozziespamela

Offline

Aubrey wrote:
Once I made sure that there was a minimum of 1 hour gap between taking
Doxycycline and other medication, my stomach problems went away.
I also take it on an empty stomach.

I have been separating the doxy from all my other meds by several hours. I can't tolerate it on an empty stomach at all. I get very woozy and then vomit within a half hour of it. There's no way I could handle this long term!
Pamela

#26336

From: "aubtsturgeon" <aubtsturgeon@...>
Date: Sun Aug 24, 2008 8:57 pm
Subject: Doxycycline and stomach ache

aubtsturgeon

Offline

Evening all :)

I just wanted to say that like some others, I used to experience quite
strong stomach aches, which Doxycycline partially contributed to.
The problem for myself was due to taking the Doxycyline at a similar
time to another medication (within 20 minutes).

Once I made sure that there was a minimum of 1 hour gap between taking
Doxycycline and other medication, my stomach problems went away.
I also take it on an empty stomach.

Not sure if this info will help any others but thought I would share it
anyway :)

Hope everyone has had a good weekend.
Cheers
Aubs

#26335

From: Suzi More <suzimore92@...>
Date: Sun Aug 24, 2008 5:46 pm
Subject: Re: Re: Anyone experience this??

suzisblue

Offline

All of my past surgeries in my abdomen have been on my right side,

one large tumor the size of an egg removed several years back,

last February four smaller, the size of golf balls, two last April,

the size of olives plus a cyst and one in my right thigh, and I have

a surgery scheduled for this November for one that is very deep and

growing and causing pain from time to time. There are tumors in the

left side of the abdomen but they are not giving me the pain the others did.

Also, I had the tumors in bothe ankles removed in a May surgery, 2007

and they were both the size of my thumbs but the left was larger.I have never

forgotten how much pain I had in those ankle, I have never forgotten how

I could not climb a stair for over six years because of them and I was

misdiagnosed with arthritis, pseudogout and edema. I will never forget

how I was called a "hypochondriac."

Suzi

----- Original Message ----
From: "jhelai9@..." <jhelai9@...>
To: Dercums_Disease@yahoogroups.com
Sent: Sunday, August 24, 2008 10:22:16 AM
Subject: Re: [Dercums_Disease] Re: Anyone experience this??

I guess that may be part of why my right side is having more problems then my left..Wonder if Dr Herbst has noticed this in her research as well??

It's only a deal if it's where you want to go. Find your travel deal here.

#26334

From: jhelai9@...
Date: Sun Aug 24, 2008 10:22 am
Subject: Re: Re: Anyone experience this??

elaine103056

Offline

I guess that may be part of why my right side is having more problems then my left..Wonder if Dr Herbst has noticed this in her research as well??

It's only a deal if it's where you want to go. Find your travel deal here.

#26333

From: jhelai9@...
Date: Sun Aug 24, 2008 10:20 am
Subject: Re: Re: Anyone experience this??

elaine103056

Offline

Not on either of those drugs.Its not a cramp as I have those as well but I eat bananas to avoid many of those.This is a different kind of pain like my knee giving out from behind..I am making an appt with the Dr to check it out..Thanks

It's only a deal if it's where you want to go. Find your travel deal here.

#26332

From: Pamela Harrison <ozziespamela@...>
Date: Sun Aug 24, 2008 3:22 am
Subject: Re: Re: Anyone experience this??

ozziespamela

Offline

jhelai9 wrote:
Behind my knee on my right leg I have had bouts where it hurts like heck and I cant move it.I dont know if this is a lump pressing on a muscle of tendon or something more serious.I have gotten a cane to help me walk

I have the same problems behind my knees, not all the time, but pretty frequently. I know I have some large lumps on the backs of my knees and I think they interfere with the joint when they swell. I can barely walk with a cane when they flare.

Also my hip on the same side gives out or is severely painful..Anyone have this same thing??

Oh yes! My hip has been that way for many years. My left knee gives me the most trouble and so does my left hip. Maybe the change in our gait from the bad knee throws our hips out? Of course, I also have some huge tumors in my hips and low back, plus a degenerative spinal condition.

I don't notice any difference taking the doxycycline except in the restroom(not easy to go anymore)...I upped my Neurontin to 1200 mgs a day too now..And my appetite is going away.

I have been on Doxycycline for three weeks for an infection and I think I have been in less pain, but I have been very nauseated every time I take it. I have also experienced loss of appetite. I looked on the paperwork from the pharmacy, and that is a pretty common side effect of Doxy. I don't know how any female could take it long term, though! I have been drinking Kefer daily and I an still battling yeast infection and the intestinal problems that come with a lack of bacteria in the bowel. I can't wait to finish them!

.I also am having some pain and weakness in the thigh muscle on the right leg..Just want answers as to what is happening to me...

My right thigh is weak and goes numb when I am upright too long (just a few minutes) I thought that was from a huge tumor in my lumbar spine, and it may have a bit to do with it, but X-rays showed degenerative spondylolisthesis in my lumbars. That causes a narrowing of the spinal canal and can casue pain, weakness and numbness. That isn't necessarily your problem, but you may want to get some xrays of your spine just to be sure.
Hope this helps!

Pamela

#26331

From: Pamela Harrison <ozziespamela@...>
Date: Sun Aug 24, 2008 1:29 am
Subject: Re: Re: Anyone experience this??

ozziespamela

Offline

Karen wrote;
My angio's seem to grow on the left side of my body first, then the right side gets them a bit afterwards. It is tremendously STRANGE but it's how it happens! Maybe because I'm a lefty, I don't know! LOL!!!

Anyone else notice this type of pattern??

Hi Karen,
Yes, mone gereally show up first on my left side and then appear in the same place on the right side of my body. I am very right handed, so I don't think that has anything to do with it.
Pamela

#26330

From: Karen Krzeminski <kamperk06@...>
Date: Sat Aug 23, 2008 10:25 pm
Subject: RE: Re: Anyone experience this??

aqua12062

Offline

I have a lot of muscle weakness and pain as well. I have these lil' aliens in my hip joints too!!!
There are muscles (like in my calves) that have these lil' aliens in them and sometimes I get wicked cramps and charlie horses. I take a daily vitamin and a potassium tablet and it helps a lot. Are you on lasix or florisemide? If I don't take lasix then my bladder gets out of whack and I get bad bladder infections and swell up everywhere. We never got to the bottom as to why it happens though. I know I had area's in my bladder that came up on the screen of the test they did (stuck a small camera up my urethra...painful!!) and the spots were consistent with "something" that LOOKED like an injury. Never came to any conclusion as to what it was though!!
We have strange maladies that no one else gets...that's the bottom line! It's a miserable thing to think about so I try to not dwell on it and keep going to work and going forward with life until I reach a time in my life where the symptoms may have me down and out to the point where I cannot work anymore...Just waiting and wondering when that day will come...

Karen K...

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

To: Dercums_Disease@yahoogroups.com
From: jhelai9@...
Date: Sat, 23 Aug 2008 15:13:56 -0400
Subject: Re: [Dercums_Disease] Re: Anyone experience this??

It's only a deal if it's where you want to go. Find your travel deal here.

Be the filmmaker you always wanted to be�learn how to burn a DVD with Windows�. Make your smash hit