Hi Mark
----I live in San Diego and I'm an e-mail "buddy" of Vivien's. We have been corresponding for about a year now and she has been most helpful---------Besides having CFIDS/FMS I also tested positive for  Micoplasma Fermentans Incognitus (AKA known as the Gulf War Illness.) In spite of the fact that here in So.Cal. we are receiving info that 50-60% of PWC'S that HAVE been tested for this horrific disease, have tested positive, I hear very little, or nothing, from other parts of Cal. about this disease.  I don't know whether they just have no knowlege or don't want to look into this.-----------I feel that it is
extremely important that PWC's be made aware of this at least giving them the opportunity to get tested and get on long term antibiotics(as I and quite a few of my friends are doing)if they test positive.  If you are interested in testing sites, etc, feel free to e-mail me at any time.   Allie Wistrom,  San Diego
(Posted 11/24/98)

Thank you, Mark for answering my e-mail.  I can only answer for myself.------I was diagnosed with FMS about 5 years ago, a year after that CFIDS.  Then last Dec. took my test for GWI and tested positive.(I might add here that I also have pretty severe arthritis of the spine, neck, pelvic area, and chest wall).  I was  given a prescription by Dr. Darryl See, Professor of Immunology at UCIrvine, for Doxycycline.  After about 2 months of taking 200  mgs a day of Doxy I realized that a lot of my pain was going away.  I talked to friends that were on the same protocol as I was and they said that their pain had also lessened.  The protocol for treating MFI(micoplasma fermentans incognitus) is antbiotics for up to 2 years, with respites in between, maybe every 6 months.  MFI is quite contagious.  I'm sure you have read that Gulf War veterans have given it to their wives and children.  The death rate stands at between 15,000-20,000.  No, I'm not a lunatic, these are facts that can be backed up. Soooo, I'm happy I got tested and I would gladly take the antibiotics for as long as it takes because I feel better and am more active and in less pain then I was a year ago.  Don't misunderstand, I still have my bad days but not as frequently.--------------Have you heard of Dr. Garth Nicolson?  If not, let me know and I'll send you his e-mail address and phone #, he is the person you really want to talk to.  He is a Biophysicist.  He has a lab in Huntington Beach and tests for MFI.  The other lab is Immunosciences, Dr, Aristo Vojani, and he is located in Beverly Hills.  This disease, to me, is the most devastating because it can be life threatening.  I can live with FMS-CFIDS-ME-Arthritis and risk more suppression of my Immune System if the antibiotics can help me get rid of the MFI.  This is purely my own choice, I'm sure there are a lot that would disagree with me.  Thanks for listening.  Blessings back to you,   Allie 
(Posted 11/25/98

"Reporting for
Duty"

My God, I give Mark to You.  I present Mark to You to use in any way You choose. Assign him to serve as You wish.
Use his mind, his voice, his hands, his heart.  May he gladly share with others what You have done for him.  May he share his life, his heart his resources.  May he lay hands on the sick and be avenue for Your healing power.  May he be courageous in walking where you ask him to walk and saying what You prompt him to say.  When he hears Your voice, may he say, "Yes Lord" with a soft and open heart.  Let him be an instrument of reconcilliation today.  help him love, love, love.
Let him love, love love.  May he receive others in love and pray for them.  Each on he meets today, Lord, will be touched by the power of Your love flowing through him.  And when the day is over, may he return it all to You in gratitude. Let him rest, and open himself so You can restore him and prepare him for the next day when He reports for duty. And please,  dear God, let the light of Your divine mercy shine on Jocelyn, his loyal spouse. Amen

This email was sent to me today (Thanksgiving Day.) All I can think to say is, I HAVE A LOT TO LIVE UP TO AS A CHRISTIAN & A NURSE And I will never forget to Pray Befour I act on Behalf of Ask The Nurse or MED-HELP.COM
again.   Mark. Nurse & CEO.  MED-HELP.COM 11/26/98

Anyone have any experience with fatigue that is caused by or aggravated by hypoxia?  I feel plumb O2 deprived - yet do not 
know if my oxygen needs fall within insurance company guide- 
lines for third-party reimbursment.  I slept poorly last night and 
can hardly keep my eyes open today.  I feel I am neglecting my 
family - all I want to do is try to sleep. 

nite 
(Posted: 11/27/98)

In a letter dated 11/28/98 11:39:33 PM EST   Mnorw41188  writes "TO OUR PAST VISITORS: & Dear Christian Friends"

Mark... I also am totally disabled with FMS.  I am not sure how you got my email address, except by looking for any AOL members who have FMS listed in their profile.

First of all, I would like to say that I am not familiar with you or the MED-HELP.COM that you talk about in this letter.  But, if this site that you describe does exist I want to thank you for sharing any knowledge that you may have about FMS.
Second, I was not impressed with the attitude you displayed........"Most people that go to MED-HELP.COM Ask the Nurse site forget that their getting Free information & links to sites that help answer their questions.  And I seldom even get a thank you let alone a donation."  This immediately raised a "red flag".  You state that it is a free site, so I do not understand why you are so angry that you have only received 3 donations in the 2 yrs that this site has been available.  Have you previously expressed concern for continuing a valuable site such as this and asked for donations??
Third.... I am very interested in your site.  I have not visited it yet but will within the next day or so.... remember I am totally disabled also.  If the site is all that you say it is, I will have no problem in making a small donation.. being disabled is very costly, as you well know.  However, before I make a donation or encourage my other friends with FMS to visit your site I would appreciate some information.  Because of the negative remarks made in your letter I am concerned that maybe this is just a way to get thousands of people to send you at least $1.00.  This would result in enough money to buy several computers so, would you please provide some authenticity of your site. Such as, when it was started, how it began, what progress the site has made since the beginning.  But most importantly, would you please provide me with a list of people who can verify that your site is what you have said it is. I would greatly appreciate anything that you can provide that will make me feel comfortable that your site is what you have said it is and that the information you provide is current and provided on a timely basis.  I would not have even questioned your request if it had not been for the negative remarks.  This kind of attitude bothers me.  I am in constant severe pain, but I do not exhibit hostility when I am chatting with anyone whether it be thru the internet or in person.  This is certainly not the way to ask for help.
And finally, if your site provides knowledge and moral support to those of us with FMS.... then I want to say "Thank you" now.  I can certainly understand how maintaining a site of this magnitude could be exhausting, both physically, as well as, financially. Mark, I pray that God will hear our prayers and find a way to provide the tools which you need to continue your site.  The power of prayer is truly awesome.... I have seen it work in many different ways.  As you see, I have a very strong faith in God and in man-kind.  I do hope that you will respond to this letter..... I am eager to hear from you and to learn more about your website.  Maybe I can even provide some information in which you can use in your site.  I also am seeing a FMS Specialist who is involved in the research area.  Thank you for listening to my concerns.  I pray that you are not offended... that was not my intention at all.  I am only concerned for myself and others..... as well as for you.  May God Bless You and Your Family and the 3 nurses who are now assisting you. 
Vi... From AOl.

It seems that i am constantly (Blowing it) For those of you that recieved a letter from me, like the one she talks about, I am 
Very, Very, sorry. I just wan't to keep Med-Help from shuting down. And I Apologize if I Made any body feel Uncomfortable.
Mark.  CEO MED-HELP.COM  (Posted 11/29/98)

I now live in Memphis, Tennessee.  This state had horribly restrictive laws regarding the prescribing of narcotic medication.  I do quite
well on oxycontin, but am unable to find a physician who can prescribe this drug for any length of time.  If anyone knows of a state near
by I could travel to that is more relaxed.  Let me know at jlarkin@magibox.net.  Thanks.  I am desperate. 
jo 

(Posted 12/01/98)

This is for Ginny and others who received mail from Mark in regard to "Ask >the Nurse" @ med-help.com.  I just got word from him and will copy some of
>his own words:  "...our computer is failing, and I drafted a letter & had my >13-year old daughter send it to some of the past people who have visited
>"Ask the Nurse".  She went a step further and decided to place it in the AOL >Fibro pages...I'm taking responsibility for it...please let them know for
me >that we are legitimate and we are in need at this time...again, the letter >was an act of being desperate, for MED-HELP>COM's sake and the hope of a
>computer to keep it up and running."  (Unquote)    --Continued > >I really feel Mark's need is sincere and hope others here on the ng will
>support him in any way financially as they are able.  What else can I say? >Yes, one has to be very cautious, and, yes, we do not appreciate Spam in
any >form - but in my heart and soul, I believe there is a real need here. >Thanks for listening.    Love, Nanny

(Posted 12/01/98)

            Docs online answer health questions

 OWINGS, Md. — The white-frame, black-shuttered building on a small-town stretch of state highway looks more like a  modest  home than the center of a revolution. Inside, Frank Sinatra croons from a boombox. His accompaniment: a handful of doctors and a pharmacist tapping out answers to anonymous patients' questions on computer  keyboards.Welcome to the ''call center'' for America's Doctor Online, a free service for America Online subscribers that's scheduled to become available to everyone with Internet access in January or early February. Have a health question? Log on to America's Doctor Online (keyword: amdoc) and type your query. At any hour, a doctor, nurse, pharmacist or dietitian will answer almost immediately.America's Doctor Online is one of a growing number of sites bringing new meaning to the urgent-care phrase ''doc in the box.'' They offer anyone with a computer and a modem the chance to  communicate with a health-care provider whenever the mood strikes. These services represent the latest development in an  Internet-driven revolution. No longer passive consumers of health care, computer-savvy patients are arming themselves with information gleaned from the Internet's vast resources.From newsgroups and mailing lists, where patients share the latest news about their ailments, to the tiny fraction of doctors using e-mail to communicate with their patients, the Internet is helping to make experts out of laypeople.  ''Doctors need to know about 600 or 700 or 800 different onditions,'' says Tom Ferguson, an Austin, Texas, physician who publishes The Ferguson Report, a newsletter about online health  information. ''If you just have one condition, and you're an intelligent person, you can know more about it than your doctor.'' Sites like America's Doctor Online are attractive to patients  frustrated by too-brief doctor visits and long waits for return  phone calls from personal physicians. ''I'm handy,'' says internist  Raymon Noble of Washington, D.C., who works a few eight-hour  shifts weekly for the AOL site.  Educational grants from drug companies and payments from  hospitals that receive referrals from the America's Doctor Online staff support the service. Some other ''ask-a-doctor'' sites charge  users.  On a typical day, America's Doctor Online provides answers in  real time to nearly 5,000 patients. Some of its competitors promise an e-mail response in two or three days.  For legal reasons, most services emphasize that they are only dishing up information, not practicing medicine. State medical boards, which license physicians, are investigating Web sites offering to write prescriptions — usually for the impotence drug    Viagra — for patients, sight unseen.  ''It changes the doctor-patient relationship,'' Ferguson says of the  ''ask-a-doc'' sites. Rather than advising patients how to proceed,  they simply answer basic questions. ''What you decide to do is up to you.''  Some of the sites are sponsored by individual hospitals or doctors' practices, like the one set up by pediatrician Stephen Borowitz  and his partners at the University of Virginia Health Sciences  Center in Charlottesville. Each day, Borowitz answers two or  three e-mail messages sent by parents around the country. He's never met them or their children. ''I only make therapeutic    recommendations in very general terms,'' says Borowitz, who  provides the service free. ''I'm empowering people to go back to  their doctor and ask questions.''   Scott Rifkin, the Baltimore physician who founded America's  Doctor Online, compares his site to the ''ask-a-nurse'' telephone  hot lines sponsored by hospitals. ''We don't diagnose. We don't prescribe,'' he says. Patients have a lot on their minds, judging by a recent afternoon of  questions asked of America's Doctor Online. A sample:  ''I had a significant amount of blood loss. What is the best  way to build it back up?''   ''What is tendinitis? How do I know if I have it?''   ''I'm having pains in my lower right side. I was just wondering what it could be.''  Clearly, some patient questions are simple enough that they can be    answered by a doctor who's never seen the person. And some  obviously signal the need for a visit to a doctor's office or hospital  emergency room.    But Sidney Wolfe of the Public Citizen Health Research Group, a consumer advocacy organization, says many medical questions fall   somewhere in the hazy middle. ''I think there are some problems  that could arise,'' Wolfe says of the ask-a-doc sites. ''You're  making a judgment based on much less information than you would have if you're seeing a patient face-to-face.'' Although state medical boards generally frown on the practice,  some physician pioneers proudly proclaim that they are practicing  medicine online. For much routine medical care, online  communication is not only sufficient, but often superior to face-to-face exchanges, says emergency medicine specialist Steven Kohler, co-founder two years ago of Cyberdocs, a Web  site that offers $50 consultations.  ''I saw people waiting in emergency rooms for hours for very simple things that I thought could be taken care of in a more expeditious manner than waiting in the ER for hours on end,'' says  Kohler, of Nantucket, Mass.  Kohler and his colleagues ''talk'' with patients in real time in a  private Internet chat room. ''After asking a few basic questions, I  don't need to touch you to know, yeah, you have another bladder infection,'' he says. ''Our whole mantra from the start has just been simple things and nothing more.''  To avoid running afoul of medical boards, which require that  doctors be licensed in the same states as their patients, the cyberdocs.com physicians consult only with in-state or foreign patients, Kohler says.  With the help of e-mail and the telephone, Boston-based Dan  Carlin serves as the primary physician for 2,000 workers building  a power plant in equatorial Africa. A nurse practitioner acts as his   representative in Africa.  Carlin, an avid sailor, made headlines last month when, via e-mail,  he treated a Russian sailor suffering from a bleeding abscess  hundreds of miles from shore. ''In what I do, there's no viable   alternative,'' Carlin says. ''It's either this or nothing.''  More commonly, physicians are setting up Web pages and e-mail  accounts to communicate with the patients they see in their offices.  The numbers are still small, fewer than a handful out of every 100  doctors. ''Other sectors of the economy have been way ahead of health,'' Ferguson says. ''If you ask doctors about doing e-mail, they   always bring up two things: Where am I going to get the time, and  how am I going to get paid for it?'' But, he says, ''if you talk to  docs who do doctor-patient e-mail, they will tell you it saves time.''  Virtually all patients would like to communicate with their doctors  by e-mail, Ferguson says. ''It's soon going to be that you can't  practice medicine without an e-mail.''  Truett Jarrard, an internist in Newnan, Ga., who went online two months ago, didn't want to be left behind. ''Patients were starting  to ask me if they could e-mail me, if I had a Web site.''  Jarrard, who concedes he never uses his home computer, sought the help of WebMD, a sort of AOL for physicians. WebMD helps  doctors set up their own Web pages, with links to a consumer  medical library on a variety of topics.  Now, like many of his patients, Jarrard is becoming something of a  Web-head. When he has a spare moment, he can often be found checking out WebMD's ''lounge,'' complete with the latest   headlines, stock quotes and weather.

                       By Rita Rubin, USA TODAY

(Posted 12/01/98)

To: Rita Rubin
I Host a free medical web site, & have 3 Nurses answering medical questions. We receive over 100,000 hits per month & Hundreds of Ask the
Nurse email questions. My reply to the article is, from my experience, Pt.s  (to understand properly) need more than just an email. They need
Pictures, Links to other Medical sites that are designed specifically to address there Medical condition, & foremost follow up on there initial
contact & email Question. Doctors answering Medical Questions on these assembly line type of sites, are questionable as to the time they are
actually taking to point the pt. In the right direction, with other resources to help them adequately. WE DO THIS here @ MED-HELP.COM we not
only answer there Medical questions but give them Pictures & follow up with links to other sites, that address there specific Medical Condition
so they can read for them selfs. And then follow up with questions they may still have. I am not trying to promote my site to you, just letting
you know that what is being offered in the article, if not Practiced in the way I described will not have a good effect in helping people in the
way that is needed. I know this to be true in my own experiences. We offer all of this & I hope they will to. & please offer a spelling
checker to this Feed back Page. Have to go now, Need to get back to those who are in need of help & encouragement.

       Mark.  Nurse & CEO:  MED-HELP.COM
       Nurse@med-help.com  http://www.med-help.com

(Posted 12/01/98)

I think that this will be a good thing, If they can get it, set up right. The Internet needs good Doctors, to help those in need.

(Posted 12/01/98)

Although some of what you say here is true. I cannot post your message unless you take
out a great portion of it, or restate it. Myalgic Encephalomyelitis or Fibro/CFIDS is,
In my studying & DR Rylls. to be caused by a virus that mutates. However it is true
that Mercury can cause most of these problems, After the study of thousands of pt.s &
along with myself, & I do have severe ME, one of only a hand full. It resembles the
same virus that causes AIDS. My research has proven this to me, that The retro virus I
have, via blood tests & the course of my illness, that it is between having ALS & MS &
that all doctors involved in my care & (one of the leading MDs in the world) go along
with this diagnosis. You see I am dying. My heave metal screen is negative, My CPK is
in the Thousands,
You need to do the kind of research that i do, 16 hours a day < Blood tests on my
self, Charting medications, & on & on & on. But keep your eyes open, in the next 6 to
8 months or so. I will be going through clinicle trailes on a medication that may halt
the ability of the virus to mutate or grow. The clinacle trials have come after much
research.
I aplaud you for your research in to mercury poisioning, & some may have been mis
diagnosed For ME/Fibro & actualy have Mercury poisioning. I will post this about
mercury poisioning, I think this is important: But with respect to what ever you have
read, Somebody ( lets say a salesman has sold you on a story) that is completly NOT
TRUE.
Feel free to read page 20 of my site & follow up on Thalidamide reading & DR Rylls
page, along with some of the other links. Again: about 60% of what you have stated to
me is true, the other 40% is simply hog wash!   M.S. was thought not to be a virus,
But here to months ago, they found it to be one, finaly under a microscope to say.
Don't let some body sell you on something, that has a potential to make money.
Research for your self, like i started. I am a Nurse & a Scientist: & I know for a
fact that we are dealing with a deadly virus, that has the ability in some, to mutate
& cause massive destruction of the body & the auto immune system. You can be asured
that we have not over looked anything, espesaly the Liver & The Intestinal tract.This
ministry is taking an Lorenzoes Oil Aproach to finding a cure for this virus. If not
to save the thousands with it, to save my own life. Good Luck as they say. I say may
the Lord giude you in the right direction.

         Mark. Nurse & CEO: MED-HELP.COM

G.....@aol.com wrote:

 Dear friend,

 Please post this on your message board.  I am a beginning researcher
 of fibromyalgia.   Please review the following information which is crucial
 to the cause for a cure.

 Regards,

 St...... Po.....

 ******************************************************************************
 ************
 An essay from one of the worlds leading Holistic
 Doctor's on the cause of fibromyalgia

 PEOPLE WITH FIBROMYALGIA HAVE LOST THEIR ABILITY TO
 PROCESS THEIR TOXINS IN AN EFFICIENT MANNER.  DUE TO
 STRESS OVER TIME, POOR DIET AND INTAKE OF ANTI-
 INFLAMITORYS AND ANTIBIOTICS, THE COLON (GUT) LOSES
 ITS NATURAL ENVIRONMENT AND BECOMES A LEAKY GUT.
 tHIS CAUSES AN INCREASED AMOUNT OF DIFFUSION OF FAT
 SOLUBLE TOXINS WHICH THE LIVER CANNOT HANDLE.  OVER
 TIME, THE OVERWORKED LIVER LOSES ITS ABILITY TO DETOX
 FAT SOLUBLE TOXINS WHICH ARE NOW CONVERTED INTO H20
 SOLUBLE TOXINS.  THESE FAT SOLUBLE TOXINS REEK HAVOC
 ON OUR BODIES.  THEY CROSS THE BLOOD BRAIN BARRIER,
 ENTERING THE BRAIN AND SHORTING OUT THE BRAINS ABILITY
 TO RUN OUR BODIES.  THEY GET STORED IN FAT, SO PEOPLE
 ON WEIGHT LOSS PROGRAMS END UP WITH PROBLEMS AS
 THESE TOXINS GO BACK INTO OUR CIRCULATION.  THESE FAT
 SOLUBLE TOXINS ALSO TURN OFF OUR ENDOCRINE GLANDS.

 WITH FIBROMYALGIA, BOTH THE ADRENAL AND THE THYROID
 GLANDS ARE EFFECTED.  THE THYROID GLAND PRODUCES
ENERGY FOR ALL METABOLIC PROCESSES TO TAKE PLACE
 INCLUDING DETOXIFICATION.  WHEN IT SHORTS OUT PATIENTS
 GET CAUGHT IN A VISCIOUS CYCLE OF NOT HAVING ENOUGH
 ENERGY TO DO THE DETOX.  THUS, THEY BECOME MORE AND
 MORE TOXIC.  THYROID DYSFUNCTION IS CHARACTERIZED BY
 THE GENERAL FATIGUE STATES EXPERIENCED BY THOSE WITH
 FIBROMYALGIA.  OTHER COMMON SYMPTOMS ARE ANXIETY,
 DRYNESS OF SKIN, HAIR LOSS, COLD HANDS AND FEET AND
 GUT PROBLEMS.
 THE ADRENAL GLANDS HELP OUR BODIES DEAL WITH STRESS
 AND CONTROL THE STABILITY OF ALL OF OUR JOINTS BY
 CONTROLLING LIGAMENT INTEGRITY.  THEY ALSO PRODUCE
 NATURAL ANTI-INFLAMMATORY SUBSTANCES.  WITH IMPAIRED
 ADRENAL FUNCTION IN A FIBROMYALGIA PATIENT, THEIR
 BODIES INABILITY TO KEEP INFLAMMATION DOWN RESULTS
 IN GENERALIZED INFLAMMATION THROUGHOUT THE BODY.
 THE KEY TO DEALING WITH FIBROMYALGIA IS TO GET THE
 BODY TO FUNCTION AT A MUCH HIGHER LEVEL THAN IT
 ALREADY IS.
 ******************************************************************************
 ***************
 An e-mail from the most respected researcher on the newsgroup:

 From: S.....  E......
Date: Thu, Sep 17, 20:35 EDT

 Dear Friend,

 Thanks for the great info.  Intestinal permeability, food allergy,
 adrenal insufficiency and impaired liver detoxification are very
 important areas which have been ignored by nearly all Fibromyalgia
 researchers and clinicians, and yet these problems play a major
 role in FM.

 Scientific support for the presence of a leaky gut in disease generally
 abounds.  We will eventually see fibromyalgia research which addresses
 these problems, but we may have to wait for the next generation to arrive.

 S. Emerson
 ******************************************************************************
 **************
 Subj:    Re: Leaky Gut research part 1 of 5
 Date:   11/26/98 8:18:14 PM Eastern Standard Time
 From:   s.......@teleport.com
 To:     M.......@aol.com


 St........

 Thank you for responding to my posts.  I can't tell you how many
 people I have directed to your website at:
 http://www.teleport.com/~semerson/fm.html 

 You have really changed alot of peoples lives with your research.
 I am going to explore mercury now that I read your response.  I
 have a question for you by the way.  If you were to list ten simple
 steps to gain ground with fms what would they be?  Please keep these
 simple so they will hit home with people.


 1. Get rid of the mercury
 2. Get rid of the mercury
 3. Get rid of the mercury
 4. Get rid of the mercury
 5. Get rid of the mercury
 6. Get rid of the mercury
 7. Get rid of the mercury
 8. Get rid of the mercury
 9. Get rid of the mercury
 10. Get rid of the mercury

 Food allergy, insufficient energy metabolism, insomnia, pain,
 chemical sensitivity, Candidiasis etcetera etcetera etcetera all stem from
 mercury poisoning in many FMers.  Not everyone with FM has mercury poisoning,
 but from my vantage point it's the bottom of a great many cases of FM.
 This goes on for decades, the sickness progesses into FM, and other
 conditions develop from the mercury poisoning, including
 hypertension and cardiovascular disease.  Even
 food allergy, which develops from the mercury poisoning,
 is a major problem by itself.  The nutritional deficiency
 produced by mercury poisoning is a major problem by itself.
 Mercury goes into the spinal cord and the brain.  It disrupts
 brain function.  It disrupts pain response, reducing
 pain threshold, so that now your CNS starts to "bitch"
 about back/neck problems, producing pain and numbness
 in response to instances of compression which normally
 would not even bother you, would not even win attention
 by the brain.  The mercury denies needed substances
 to the muscles, including ATP, oxygen, and glucosamine.  The result?
 Muscle damage, knots, myofascial pain syndrome with
 contracted muscles. The mercury weakens the immune
 system.  Parasites, yeast, bacteria, and other pathogens
 meet less resistance.  Mercury disturbs sleep.  Bascially, chronic
 mercury poisoning produces premature aging.  It slowly kills you.
 It just sends you to the grave faster, but slowly destroys your
 body along the way.

 Obviously there are other kinds of FM: Lyme disease,
 Hepatitis, silicone implant disease, Herpes, etc.  But everyone
 with FM must be screened for mercury poisoning.  It's
 the most important issue, and society will need to
 change on this, and it WILL change.

 First get rid of the mercury, and then deal with the
 remaining problems, the allergy, chronic infection, nutritional
 deficiency, Candida, gut dysbiosis etc.  But attack the
 mercury/heavy metal problem first, because many of these
 other problems will clear once you remove the mercury.
 The Canadian doctor referenced at my Website, who said
 that treating mercury/heavy metal poisoning is the
 "foundational" step in FM treatment, is correct.
 Eventually the FM researchers in academia will come
 around to this, but it will take a while.

(Posted 12/06/98) By: MAN@MED-HELP.COM 

Dear Friends, 

I would like to use the bulletin board to report that this day is good.  It is easy for me to shout "help" - today I would like to say that I
am grateful, even when I am tired, even when I feel alone, even when I am in pain.  I am grateful that God is there to comfort me and to
protect me from my own self-pity.  And I thank all of you, out there, for being the support that I so need and never knew existed. 

Love, 

Jolene 

(Posted 12/9/98)

.
Mark
>> I just talked with my sister who is in the Her2 study.  She gets her treatment at a large medical facility.   The study participants got the IV
treatment weekly.  This last week all the  participants, except my sister, were told that at the end of December the  study was finished with them.
The treatments would still be available but  they were on their own to pay for them.  My sister was told since her case is so unusual, the study would
continue with her as the only participant.  The Her2 product will be $1800 per treatment, plus the IV set  up.  (My comment:  Wow!)  They will
probably have her in  further studies and interviews.  Some of these ladies seem to remember  be told the product would be available to them life long
even when the study is completed and now feel they have been dupped. Perhaps you can  help me out here.  My brain will not bring in the
terminology that I want to remember:  What is the term for those patients applying to the drug company for continued use of the drug after the study
closes?  I remember it be slung around alot when the ampligen studies closed.  It's not the program for indigent patients but something else and
I just can't remember.
>>  Thanks. Viv.

(Posted 12/12/98)

For More Information On Herceptin: Contact: man@Med-Help.Com

• I just wanted to let you know I have alerted our segment producers to 

your med-help site. This doesn't mean they will be using you for a story 
soon, just that they will be aware of your skills and availability the 
next time they do story concerning the Internet and health. Nicely done 
site, by the way, in particular the page about fibromyalgia.

Merry Christmas.
RH.

(Posted 12/14/98)

(Posted 12/14/98)   Mark.  Nurse & CEO:  MED-HELP.COM

The Candy Maker

A Candymaker in Indiana wanted to make a candy that would be a witness, so he made the Christmas Candy Cane. He incorporated several symbols for the birth, ministry, and death of Jesus Christ.  He began with a stick of pure white, hard candy. White to symbolize the Virgin Birth and the sinless nature of Jesus, and
hard to symbolize the Hard Rock, the foundation of the Church, and firmness of the promises of God. The candymaker made the candy in the form of a "J" to
represent the precious name of Jesus, who came to earth as our Savior. It could also represent the staff of the "Good Shepherd" with which He reaches down into the ditches of the world to lift out the fallen lambs who, like all sheep, have gone astray. Thinking that the candy was somewhat plain, the candymaker
stained it with red stripes. He used three small stripes to show the stripes of the scourging Jesus received by which we are healed. The large red stripe was for the blood shed by Christ on the cross so that we could have the promise of eternal life. Unfortunately, the candy became known as a Candy Cane-a meaningless decoration seen at Christmas time. But the meaning is still there for those who "have eyes to see and ears to hear ". I pray that this symbol will again be used to witness To The Wonder of Jesus and His Great Love that came down at Christmas and remains the ultimate and dominant force in the universe today.

(Posted 12/15/98)  Sent in from: Vivien

Thankyou: & have a happy Jesus Day.  Mark.

M-----@aol.com wrote:

> Dear Mark,
>
> I read a post response that you sent to Gabsol and I wanted to  recommend a doctor to you.  I know that you are into traditional
> medicine but there is something out there that is beyond your  reality or thinking.  There is a clinical kinesiologist in Manhattan,
> N.Y. who can tap into the body like a computer and get to the deep root of any correctable problem and then correct it.  He has
> saved countless lives of people who were diagnosed as dying. I personally have had a severe hyadel hernia healed, I have had
> a severe corn allergy removed and I lost over 60lbs by an accurate food elimination diet.  Let me know if you would like to at
> talk to this doctor.  Things happen for a reason and you have an opportunity to experience the next generation of medicine.  You
> already have medical doctors using basic kinesiology muscle testing to pick correct medicines.  What I am talking about
> is absolutely mind boggeling!
>
> Let me know if you are interested.
>
> With kindest regards,
>
> S..... P......./Atlanta
> P.S. I go to the Manhattan doctors brother here in Atlanta who just saved a kids life in Egelston Children's hospital who was at
> 85% life support due to e-coli.  He blew away a team of Emory doctors who told the parent their kid was not going to make it.
> P.S. I do not promote these doctors, and I rarely give their information out;  you broke my mold by writing that you were dying.

Steve,
    Feel free to send me the information. I will look it over, and post it on the bulletin board, as long as it is not anti-Christian. I am at the
stage in my life where I am open to anything that would save my life, as long as it stays within the boundaries on my spiritual beliefs, because
after life comes death, and when I meet the LORD, I want to be able to stand before him, knowing that all I did was within accordance to what he would of
wanted me to do. Sure, I could take my life, or if a guy on a street corner put up a shingle stating "Free Healing" and anybody who went there really
got healed, I think everybody in the fear of facing death would run to this guy on the corner and give up whatever is needed to get the healing from
him; but you see, I would not run to that man, for I am bound by my moral and spiritual obligations as a nurse and a Christian. I am presently engaged
with highly renounded professors in the research and trials of a medication that will help stop the virus that I have that causes Myalgic Encephalomyelitis. This disease can only be cured by one of two ways, 1. The Lord will heal the individual or 2. the Lord will allow a cure to be found. I am presently working on #2. When I was a child, I was afflicted with several diseases that at that time, and even today, there was no cure for, but I prayed as a child, that when I turned 18, the Lord would heal me of these diseases. When I turned 18, I was healed, and gave thanks to the Lord for something that medical science could not do. I am now afflicted with a disease which I have not recieved healing for. This may be because the Lord wants me to either help others, or find a cure for it. In between the years
of 18 and 38, the Lord blessed me with being a one of the top athletes in the country. My martial arts skills would have made Jackie Chan look like a
beginner. I was all collegant in everything I did: body building, martial arts, gymnastics, etc. The speed of my hands and feet were close to that of
Bruce Lee. I could bench press over 400 lbs, my muscles and my body were truly toned to perfection, my mind was open for learning, and I recieved the
best grades and highest score in my nursing exams. All of this is the honest truth. Why do I tell you this? To show you how the Lord took a piece of sick
and worthless clay, and molded ti into a mighty golden statue, but then at the same time, showed everybody that the statue could be broke. I have
learned a lot, and have experienced a lot in my life on this earth. I have learned what it is like to be sick, shunned, and made fun of, and called
retarded. I have learned what it is like to be revered and powerful and awesome, and I have learned to be humble and know that GOD is in command of
my life, and that he can do anything, and that all the glory goes to him, not ones self. If in the information that you are going to send me, I find any truth or valuable information, I will surely let all know of its existence. Lord be with you my friend, and I hope I find some good in what is sent, for there are many who need help now days. This does have to be the longest letter I have ever transcribed, but the Lord works in mysterious ways.
                                                                GOD Bless,
                                          Mark, Nurse and CEO: MED-HELP.COM
 

(Posted 12/22/98)

Gamma Globulin is worth trying in CFIDS

Jeff: Wrote:
I have read two reports--one from Dr. Ryll and one from Dr. See(both of California) that opines that Gamma Globulin is worth trying in CFIDS and is generally beneficial.  Is there any information you are aware of to the contrary?  And is it in fact the case that it is better in CFIDS when given via IV?

3 Jan 99

Dear Mark,

Gamma globulin is used by virtually all experts who study ME/CFS. While it is most effective given intravenously, usually at the rate of 10 grams weekly, it is sometimes given in larger doses less frequently. This, however, is an expensive method to administer it and most patients will not be able to afford it. For quite a while, medicare would pay, but they put a stop to it. There are not many insurance carriers who will pick up the cost.It is also effective given intramuscularly,
usually at the rate of 5 milliliters weekly, placed in the upper, outer buttock.

There is no danger of contracting disease from gamma globulin. In fact, we give it to prevent certain diseases. I have given it to hundreds of
patients. Of these, only two developed allergies to it so it appears to be quite safe. It is difficult to get, but with persistence, one can probably find it. 
The exact method of action is not known. I believe it modulates the immune system. Because in ME/CFS there are elements of both immune
deficiency and immune over-activation, I believe gamma globulin acts in both ways. It probably serves to dampen certain elements of the
over-active immune system, and also help with immune deficiency.

To my knowledge, two blinded studies have shown its efficacy. Andrew Lloyd of Australia conducted a large study showing that it is effective. 
When I was at the Fort Lauderdale conference, I heard an excellent researcher from the UK document a good study on teenagers, showing that
it is effective. I do not know if she has attempted to publish her study.

Sincerely,

Erich D. Ryll, M.D.
Consultant
Division of Infectious & Immunologic Diseases
University of California
Davis

(Posted 01/03/99)

HI!  I am a silicone breast implant disaster and had explantation in '94.
My hope was that no more further damage would be done and I would feel
better.  (I had 4 sets of implants rupture between 1982 and 1994.)  My
neurologist has run both spine and brain MRIs to determine what is causing
my nerve problems.  My reflexes are exaggerated, I am numb in various
places, I have weakness and tremors, and of course, I twitch or "jump" most
of the time.  Reading some of the bulletin board makes me wonder how many of
"us" who live day to day with pain, "foggy" minds, narcolepsy and weakness
are told we have a great need for attention-getting!  I never wanted my
"claim to fame" to be illness!!  I had thrived on being a go-getter, having
intestinal fortitude, capable and having a great attitude.  I have managed
to keep my sense of humor, but I'm not satisfied to know that I'm "sick" and
there's no lasting fix.  I have tried many herbs, nutritional supplements,
all those wonderful miracle cures . . .  But I know that my many symptoms
are a mystery to the main stream physicians and their staff.  I agree that
we are probably all poisoned to a degree, some more than others.  The
question about mutating viruses and bacteria makes sense, because I'm sure
that we have all had doctors that patted us on our heads and given us
antibiotics to pacify our symptoms.  I don't think our bodies were designed
to take on as many chemicals and who-knows-what we're exposed to on a
constant basis.
Because of the caring of my neurologist and her determination to "get to the
bottom" cause of these symptoms, does anyone know of test(s) besides MRIs
that can explain ALS symptoms?
Thank you for any help!!!
Helen

(Posted 01/30/99)

Hello,
        I was diagnosed with Fibromyalgia after a car accident.  That has been 5
years ago, and I am still in the "learning" stages of all this.  Do you
know if massage and chiropractic treatments are of any benefit for people
with Fibromyalgia?

(Posted 02/05/99)

I finally got around to and read the law in California that protects physicians from using their
discretion in prescribing narcotics for pain, when other means fail.  I never gave it much thought
when we lived in Texas and I was being treated at MD Anderson; but I think Texas doctors may
have similar protection.

Are you aware of any other states that have some sort of protection for the doctor and for the
patient, as well?  I honestly am not looking for a short trip to receive medical attention or to find
drugs.  I would like to be treated by a single doctor (when possible and practical) so that if I get
sick - really sick - the doctor taking care of me will know just who I am.  In this world today, that
is asking a lot of our over worked physicians.  My doctor friends work long hours- more that 8-16
hours/day.  Back to my question, do you know which states offer this protection.  As you may
recall, many of our patients ask for this sort of information.

I may have already told you this - but here goes, even if I am redundant.  It is an experience I am
willing to share if you want to put in on the site.

Last time I saw the doctor at the "Pain Clinic" - I showed him some of the stuff I found online
regarding the use of Sinemet AND long acting narcotics for relief of leg and arm pain associated
with restless legs and arms, as well as sleep deprivation.   I told him that oxycontin is quite often
utilized with the Sinemet to provide relief to so many.  His response was, "I just returned from
California, the weather is great.  No mention was made of my c/o pain or of the material I gave
him.  I received no response whatsoever.  What a dismissal.  That is enough about me, today.

Give our love to your family.  Michael and I feel close to all of you, today.  Serious and/or life
threatening circumstances isolates families and family members from on another.  Were it not for
God in our lives and in the life of our marriage, it would not be good.

One Grateful Nurse

Jolene

(Posted 3/4/99)

NEWS RELEASE 

From: Autoimmune Technologies, LLC 

144 Elks Place, Suite 1402
New Orleans, Louisiana 70112 USA
(504) 529-9944
Web: http://www.autoimmune.com/
E-Mail: mailbox@autoimmune.com
Contact: Russell B. Wilson, Ph.D., President,
  or Michael D. Charbonnet, Manager 

(NEW ORLEANS, February 10, 1999) Autoimmune Technologies, LLC, a New Orleans biotechnology company, today announced that scientists have discovered a new antibody in the blood of many fibromyalgia patients. This research is described in an article entitled "Anti-Polymer Antibody Reactivity in a Subset of Patients with Fibromyalgia Correlates with Severity," which appears in the February 1999 issue of The Journal of Rheumatology, a prominent scientific journal. 

Using a patented blood test called the Anti-Polymer Antibody Assay, or APA Assay, researchers found anti-polymer antibodies in approximately one-half of all patients who were diagnosed with fibromyalgia and in more than 60% of the fibromyalgia patients with severe fibromyalgia symptoms. Patients with diseases frequently confused with fibromyalgia, including rheumatoid arthritis, systemic lupus erythematosus, and systemic sclerosis/scleroderma, had a much lower incidence of these antibodies than did the fibromyalgia patients. 

Fibromyalgia syndrome is a chronic pain disorder that affects millions of individuals, primarily women, in many countries throughout the world. The cause or causes of fibromyalgia are currently unknown, but researchers have suggested that trauma, infection, and exposure to environmental factors may all participate in the development of this debilitating illness. Together with widespread pain and tender points in various areas of the body, signs and symptoms include fatigue, sleep disorder, morning stiffness, headache, cognitive problems, and other symptoms. In the United States, some 3% to 5% of adult women meet the strict diagnostic criteria of the American College of Rheumatology for fibromyalgia, but as many as 15% to 20% of adult women may have fibromyalgia-like symptoms. 

Fibromyalgia syndrome is often difficult to diagnose, and typically a diagnosis is reached through the time-consuming and expensive process of ruling out other illnesses that have similar symptoms. In addition, many physicians consider fibromyalgia to be the result of aging and other normal body processes and do not regard it as a distinct clinical disorder. The resulting reluctance on the part of some physicians to attribute their patients' symptoms to a specific illness has added considerably to the distress of many fibromyalgia patients. Until now, there has been no laboratory test to help identify fibromyalgia. 

"Our results show that there is a unique immunological response in many fibromyalgia patients," said Russell B. Wilson, Ph.D., president of Autoimmune Technologies and lead investigator of the published study. "We hope that these findings will lead to a better understanding of the illness and to the development of treatments for these patients." 

It is possible, Dr. Wilson pointed out, that anti-polymer antibodies are associated with one of the several different causes of fibromyalgia, perhaps the cause that tends to produce the most severe symptoms. The published data indicate that this may be the case, although more research will be needed. In addition to serving as a marker for fibromyalgia, he noted, it is also possible that these antibodies are directly involved in initiating or promoting fibromyalgia. 

The development of a laboratory test for fibromyalgia was welcomed by experts in the field. 

"The fibromyalgia syndrome is common in clinical medicine and in the general community. We also have data on its cost," said I. Jon Russell, M.D., Ph.D., an internationally recognized fibromyalgia investigator and clinician from the University of Texas Health Center at San Antonio. "The direct medical costs of this disorder to the U.S. economy are over $16 billion annually. The findings of this study raise the hopeful prospect that a new test will help us better understand fibromyalgia. Further research is needed to confirm the clinical specificity of the test relative to other painful conditions. In addition, it will be important to determine whether the antibody identified by this test in the blood of people with fibromyalgia is related to the cause of the disorder or simply represents an interesting epiphenomenon," Dr. Russell said. 

Associated factors appear in parallel in epiphenomena. If further research shows the production of anti-polymer antibodies to be an epiphenomenon, the antibodies would serve as a laboratory marker for fibromyalgia without playing a direct role in the disease process.

Kristin Thorson is president of The Fibromyalgia Network, a patient self-help organization headquartered in Tucson, Arizona, and president of The American Fibromyalgia Syndrome Association, a charitable organization dedicated to funding research on fibromyalgia and chronic fatigue syndrome. "In the past," Ms. Thorson said, "many health insurance companies and some members of the medical community have argued that fibromyalgia is not real - all because no one had developed a lab marker to indicate otherwise. Now that there is a blood marker that can be shown to correlate with disease severity, there should be no more debate over the existence of fibromyalgia and scientists should be encouraged to research effective therapies for this potentially disabling illness." 

Robert M. Bennett, M.D., a physician and scientist who is chairman of the Division of Arthritis and Rheumatic Disease of Oregon Health Sciences University in Portland and a widely published and internationally known expert on fibromyalgia syndrome, said "There are two major problems for most physicians in accepting fibromyalgia. The first is the lack of an easily performed laboratory test. The second is its recalcitrance to therapy. The promise of a potentially useful diagnostic marker is an exciting development in this field. If the sensitivity and specificity of this test can be confirmed by independent laboratories, it could open up an important new research avenue for a condition that compromises the quality of life of five million to ten million U.S. women." 

Autoimmune Technologies expects during 1999 to apply to the U.S. Food and Drug Administration for approval of a kit form of the Assay as a diagnostic test. "The reproducibility of the APA Assay has already been independently demonstrated by the National Institute of Public Health and the Environment, or RIVM, in The Netherlands," said Dr. Wilson. "The RIVM has found the APA Assay to give reproducible results and to be useful for the evaluation of the presence of anti-polymer antibodies in human serum. The other confirmatory studies discussed by Drs. Russell and Bennett are already well under way. These studies, together with our research published in The Journal of Rheumatology, will be included in our application to the FDA for approval of the Assay as an in vitro diagnostic test to aid in the diagnosis of fibromyalgia." 

Other authors of the article in this month's issue of The Journal of Rheumatology include Dr. Oscar S. Gluck and Dr. John R. P. Tesser of the Arizona Rheumatology Center in Phoenix, Dr. Janet C. Rice of Tulane University School of Public Health and Tropical Medicine, and Dr. Alan J. Bridges of the University of Wisconsin School of Medicine in Madison.

Anti-polymer antibodies were discovered by researchers at Tulane University Medical Center, where the APA Assay was developed. Autoimmune Technologies has licensed the APA Assay from Tulane. An APA Assay kit is not currently in commercial distribution in the U.S., although the Assay is being performed by Autoimmune Technologies as a service to physicians and researchers for investigational use only. A kit form of the APA Assay will be available in the near future in other countries. 

The APA Assay is covered by U.S. and European patents, and patents in other countries are pending. 

For further information, visit the Autoimmune Technologies Web site at http://www.autoimmune.com.

<end of news release> 

What is APA Assay? 

A study of women that had silicone gel-containing breast implants was done to detect the presence of serum antibodies directed against polymeric substances. They were looking for the anti-polymer antibody (APA). This study was done and the APA Assay was developed by Garry Lab Silicone Research at Tulane University Medical Center. 

The individuals with exposure to silicone breast implants were placed in three categories by degree of signs and symptoms of non-classical autoimmune disease. In the advanced category 68% tested positive and 43% did in the moderate catergory, with only 3% positive of those with limited symptoms. 

How was a study done on people with Fibromyalgia? 

Further testing was done as the symptoms of the people with silicone breast implants were similiar to those with fibromyalgia. This time patients with any kind of silicone breast implants or autoimmune diseases such as lupus and scleroderma were excluded from the study. The number of people in the study were 48 with fibromyalgia (as determined by ACR criteria), 16 with osteoarthritis, and 14 with rheumatoid arthritis. Reaction to ASA Assay was 48% for those with fibromyalgia, 19% for osteoarthritis and 7% for rheumatoid arthritis."These results clearly suggest that serum antibodies to polymeric substances as detected by the APA test may be a useful marker in the diagnosis of fibromyalgia and other related conditions." 

This information was taken from the abstract "DEVELOPMENT OF A LABORATORY MARKER FOR FIBROMYALGIA." printed in the Official Program of the 1996 National Scientific Meeting of the Amercan College of Rheumatology, and distributed as Volume 39, No. 9 (Supplement), September 1996 issue of the Journal Arthritis and Rheumatism. 

Oscar S. Gluck and John R.P. Tesser, Arizona Rheumatology Center, Phoenix, AZ 85015; Scott A. Tenenbaum, Janet Rice, David M. Sander, Douglas R. Plymale and Robert F. Garry, Tulane University School of Medicine, New Orleans, LA 70112; Russell B. Wilson, Autoimmune Technologies, LLC, New Orleans, LA 70112. 

Further studies have been done and can be reviewed at http://www.autoimmune.com/APASciSumHtml.html 

How do I get the test? 

The APA Assay is being performed by Autoimmune Technologies as a service to physicians and researchers for investigational use only and is not in commercial distribution in kit form within the United States. The fee for performing the test is $145, and payment should accompany the completed Requisition Form and the blood sample to be tested. 
See http://www.autoimmune.com/ForP&RIntro.html 

Research done by Fibrocloud. 
 You can get there by going to AOL & clicking on the link below. http://members.aol.com/fibrocloud/apa.htm

Sent in by Joanne, From AOL.COM, Thanks Joanne.

(Posted 3/10/99)

Subject: Bulletin Board - Sickle Cell
Date: Thu, 18 Mar 1999 01:54:36 EST
From: JANNIES4@aol.com
To: webmaster@med-help.com

Tonite, Greg Moorrison of  Black Entertainment Television  (BET)  showed
news made in Atlanta at Emory University's Egelston Children's
Hospital---they are experimenting with a little black boy named Keon ______(didn't catch his
last name) who has Sickle Cell. They use matching umbilical cord blood which (as professionals know) is otherwise discarded to help this child build a whole new blood factory. So
far it's working and they'll test him know in 12 months or so. I want to believe it's on some website somewhere.  Can you help me locate the website.  I'm trying the search engines and medical sites and newpapers, everythng. 

I look forward to hearing from someone.

(Posted 3/18/99)

Subject: Bulletin Board Reply to Antibodies in F.M.
Date: Sun, 21 Mar 1999 19:59:39 -0000
From: "k  jacques" <k....................@demon.com>
Reply-To: "k  jacques" <k.................@demon.com>
To: <webmaster@med-help.com>

Diagnosed F.M/M.E.
Previous Occupational Health Nurse in England. In September of last year 1998, I wrote an article for for the international Academy of Oral Medicine & Toxicology in America, stating the links
between F.M. and Micro-mercurialism. At this point I was under the impression
that it was my own view. Since then i have had 15 amalgams removed, and surgery
for amalgam in Jaw bone. I found the links through hair analysis of toxic substances.
Not only do I now find links to this from your excellent site, but also I can list many other sites that I have come across, that have also drawn the link. If you wish to contact me on E. Mail A.......@hotmail.com I would be happy to Quote them. Regarding the antibodies article, I am deligted at a test at long last, but given that such a large proportion of S.B.I patients, also tested
positive, are we not looking here at simply the bodies reaction to trying to cope
with a toxic substance, and the chemical mayhem that it causes even down at
mitochondrial level. The thought of a virus, had also crossed my mind, as like many patients,
I am still in decline. I do however feel that this is unlikely, as you may wish to consider the following.
The web-site at www........com gives microscopic detailed pictures of the effects of mercury on cell structures through immunofluorescent techniques. These are irreversible, and I'm not sure of the long term effect on the bodies biochemistry, as it tries to deal with a foreign substance. I presume, we would try to produce antibodies. Would anyone like to comment on this phenomena and get back to me.
I wish you all every success in the battle against this crippling condition, and hopefully by us all working together and with Gods help,we can piece our knowledge together and help each other.
Lots more info available if required. Lets try to assist the medical teams by pointing them towards immunofluorent techniques in general, as Med-Line have made some sound discoveries here.
Please press on with the antibodies and testing, as it all helps us to be
believed, when we say we are in intense pain, for which I have found the
only relief is the new Ostepathic treatment for M.E. in England.
Kind regards.
Sheila. S.E.N. O.H.P.N. from England.

(Posted 3/21/99)

I have had "chronic fatigue syndrome" since at least 1975 and postural orthostatic tachycardia syndrome
(POTS) since 1994.  After reading a recent study by Dr. Michael J. Rosner
( http://www.teleport.com/~nfra/Treatbrk.htm#Top ) linking CFS and fibromyalgia to craniovertebral
stenosis I got a MRI this past Sunday (4/25/99) here in Eugene, Oregon.  My scan revealed a "cervical
spinal stenosis" so bad that my local radiologist diagnosed it immediately and there was no need for
detailed or expert analysis.  I did send copies to an expert, Dr. Heffez of the Chicago Institute of
Neurosurgery and Neuroresearch, and he told me the obvious: I need an operation to decompress my
spinal cord.

There are at least 500,000 Americans with "chronic fatigue syndrome" and thousands more with
fibromyalgia and POTS. All three of these disorders can be caused by spinal compression and I am living
proof of that because I have all three disorders (please visit my Web page on POTS and CFS at:
http://www.clipper.net/~calder/POTSWEB.html ).  >From talking with Dr. Heffez and others involved in
this research it appears that as many as 50% of CFS patients have stenosis as a prime cause of their
illness.  It also appears that genetics and viruses come together in some way to cause or aggravate many
of these conditions and that is where the research needs to focus. 

I believe this new finding is of Rosetta Stone importance.

Sincerely, Christopher Calder calder@clipper.net
377 W 8th, apt. 114
Eugene, OR 97401
(541) 345-6372

(Posted 5/05/99)

Dear Bulletin Board;

What do think about the metabolic treatment of Fibromyalgia.  I have
always thought that my internal workings have a sluggish response ever since my
IBS and FMS connection.  Have you heard about the more extensive thyroid
testing and medical treatment using low dosages for example of the natural Amour
Thyroid supplement that has met with some success? I don't imagine it
is being readily embraced now, but do you think this might be on the
horizon for endocrinological treatment in the future?  What might be the risk
factors of trying this?

Thankyou Bulletin Board,  s....@bytehead.com

(Posted 5/07/99)

        To :  All Who This May Concern: 

        It seems  that on June Fifth 1999, MED-HELP.COM , may have to close 
        down.  After having a meeting with our the Internet service provider, 
        they told us that MED-HELP.COM was too big for them to sponsor any 
        more.  They said with a site as big as ours, we should be able to bring 
        in the advertising, for it to pay for itself.  That means as of June 
        first, we will have to come out with two hundred dollars for that month, 
        plus 150 dollars back pay.  We owe them.  However though, they are 
        willing to work out a payment schedule for us, that as long as the 
        balance does not fall behind, and it is increasingly paid off. they will 
        continue to work with us.  But that still leaves us with a balance every 
        month of 200.00 dollars that we do not have, It is true that the site 
        can survived on advertisements, but this is something that I know little 
        about, or have time to do.  As Dennis, the director of mother load 
        Internet  explained to me, if  MED-HELP.COM is marketed correctly there 
        should be no problem in it's paying for itself,  many times over. 
        Something that he also suggested was, that we get a secure socket layer, 
        so people who want to donate by credit card can do so. 
        I have looked into this by the way, it seems he would run about 600 
        dollars per year, and around two to three hundred dollars for the page 
        to be put up,.  If any of you know how to do this cheaper, please let me 
        know, for I believe this will help a great deal in taking care of much 
        of our needs.  Or if anybody knows of a sponsor who may want to get 
        involved with MED-HELP.COM , it would be a small investment to achieve a 
        greater return.  If I could get some help in paying for the site for 
        just the next two months, I will be able to use my own income to pay for 
        the site management, and the upgrade to a secure soccer layer for credit 
        card donations.  What MED-HELP.COM really needs is somebody to take over 
        the responsibility of site management & design.  This will free up the 
        time to allow me to get back to the main part of the site, which is 
        building up its knowledge database, working on getting audio and video 
        on the site, and all of the hundreds of other things that it takes that 
        makes up MED-HELP.COM . there are so many areas that MED-HELP.COM can 
        help with, this is only the beginning of something very big,  that will 
        help hundreds of thousands of people all over the world, like the 
        Russian medical page which we're working on right now, this is something 
        to detail to go into in this E-Mail, but I would be glad to discuss it 
        with you that a further time, it entails people with ham radios or 
        amateur radio in Russia going out to those who are medical need, with a 
        computer, and  have Nurses on the other end, ready to help with their 
        medical questions.  They're so much that this site can accomplish, in 
        has grown so big, well beyond my expectations, that at this time, I am 
        just overwhelmed.  I  guess when it comes to science and medicine, and 
        helping people, I know what I'm doing.  But the site has just got too 
        big for me to handle by myself.  I would appreciate it very much, if 
        some of you could let your E-Mail groups, or Alt groups, know of our 
        situation.  Maybe there's somebody out there who has the answer, or 
        somebody out there who may be able to help.  I tried this once before 
        sending them a e-mail to get help, and it  blew up in my face.  I guess 
        what I'm asking for is help.  Please let me know of anybody has the 
        answers, for for I do not want to see this site close, it's gotten big 
        enough to be a worthwhile endeavor to help a lot of people, and to see 
        all this thrown away because of a few hundred dollars is a terrible 
        thing. also our church has given us until September the 1st become 
        incorporated.  So as you can see there's just so much site management 
        that needs to be done.  And I just have no idea of how to go about 
        this.  The only other course of action that I can think of, is to hire 
        somebody for site management, an start charging a fee for people to be 
        able to use MED-HELP.COM.  But this is something that I never went to 
        happen.  So to anybody can help, even if it's by letting other people 
        know of our situation, please let me know, I am desperate. 

         Cordially, Mark Norwood.  Head Nurse and CEO: MED-HELP.COM. 

        PS: for give me for any errors in this E-Mail, it is being dictated by 
        voice technology, I cannot typing more with my hands. 

(Posted 5/23/99)

"Orange, C." wrote: 

  Dear Mark,I am so sorry to hear of the situation that has come to hand. I am meaning to be
  gentle in the next few words I say- sometimes it is hard to convey thoughts over a typing
  machine, so if I am out of line, I wholeheartedly apologize right now. What I found lacking in
  the message that you sent was the faith that you had when I first found your site. Lay this
  financial burden at Jesus feet. If this wonderful work that you and your co helpers have been
  doing is suppose to continue, Jesus will give you the funding you need. I wish I were rich, I
  would give you every cent, but I felt compelled to write you and kind of remind you of
  something that you already know, - that if you give it all up to God , he will not only finance it,
  but he will supply all the needs to keep it going. If not, don't fret, that is exactly what Satan
  wants you to do-- worry. You are a patient of Fm, worry is your enemy. Kick back, get a
  corporate prayer going from those you trust and that you know that believe God will continue
  your good works if it is in his will. If it isn't, take a vacation and go fishin', cuz when there is a
  lull in Gods work, he is usually giving you the time to rest so that he can use you in bigger and
  more ways than your mind can comprehend.  Relax Mark, give it to your sweet Jesus, and ask
  him to mind the store, cuz you can't do it without him.Lord, I hold up Mark and his crew for this
  site to you right now in Jesus name, Father, he needs your help, If it be your will give him
  strength, and the finances to keep it running, also Lord take the worry off his shoulders and let
  him know you are still in control. Praise you for Mark and his crew, we need them Father, if
  you have set this in motion, we know in one accord that you will continue your work no matter
  what man says, and if the work is finished in your sight, set Mark and his crew on a course
  that fills them with your spirit and peace that lets them know that you are with them.  Praise
  you Father, In Jesus precious name, Amen 
                                      In the Love of Jesus our saviour, Cindy Orange 

Thank You, & God Bless You. I am going to post this on the Bulletin Board, For not only my benefit, But for those who are like me right now, Worrying! when we shouldn't be. 

Thank You Lord for this letter, & for Cindy, who you inspired to write it. 

Your Servant:  Mark. 

(Posted 5/23/99)

Subject: Bulletin board
  Date: 
        Wed, 9 Jun 1999 22:17:35 -0400
  From: 
        "Sharon Murray" <clancym@golden.net>
    To: 
        <webmaster@med-help.com>
 

hi everyone;i have just been diagnosed with fibromyalgia and osteoarthritis in c5&6. i am  being    pressured to work more hours
than i feel ready for. the pressure is beingput on by wsib and it is bothering my nerves terribly.i just wondered if anyone else has had
this problem and how you handled it. looking forward to hearing from all you fibromyalgia sufferers.thanks, clancy

(Posted 6/10/99)

Subject: (no subject)
Date: Wed, 9 Jun 1999 12:45:47 EDT
From: SAMLEW@aol.com
To: webmaster@med-help.com

I WANT TO TALK WITH OTHER SUFFERS OF FIBRO LIVING IN FLORIDA

Subject: Bulletin Board
Date: Wed, 14 Jul 1999 22:15:47 +0100
From: "Dawn Ashcroft" <dawn.ashcroft@ashcroft2.dabsol.co.uk>
To: <webmaster@med-help.com>

Does anyone know if there is any association between Fibromyalga and a
swollen tongue.???

(Posted 7/15/99)

Many People with Fibromyalgia experience symptoms of: Red or White soars in the
mouth which ENT Doctors can not figure out, Swollen & Redened tongue, Burning on the roof of the mouth, And other unxplainable oral symptoms that only seem to plague
People with CFIDS/Fibro/ME/EBV .

(Posted 7/17/99)

ASK THE NURSE Question: 9/08/99

Subject: ASK THE NURSE BULLETIN REPLY
Date: Tue, 7 Sep 1999 18:50:59 EDT
From: B........@aol.com
To: webmaster@med-help.com

 HI  I HAVE HAD THIS PAIN IN MY ARM FOR A WEEK OR SO NOW IT FEELS LIKE A 
PULLED MUSSLE BUTT NOT SURE  I CAN PULL IT BACK WARDS BUTT NOT FORWARDS
OR  OVER MY HEAD  IT REALLY PAINFUL  WHEN I MOVE IT  . 
IT IS UP BYE MY  SCHOLDER TO MY ELBO AREA  CAN YOU HELP  THANK YOU 
                                           B........@AOL.COM

(Posted 9/08/99)

The Nurse Responds,

The obvious question is this: have you suffered any injury - work or
sports.
Is there any swelling or redness in the area and have you had any fever?
Have you tried ice on the area?  What, if anything, gives you relief?

I await your response.

Jolene Larkin, RN

(Posted 9/09/99)

-------- Original Message --------
Subject: Bulletin Board
Date: Wed, 22 Sep 1999 12:51:55 -0400
From: "Mickie ......" <r......@intrepid.net>
To: <webmaster@med-help.com>

I need to give you some background first before I ask my question.
My 28 yr old son in law has been undergoing treatment (almost 2 yrs) for
squamous cell carcenoma (sorry for any spelling errors)
He's had multiple surgerys, with the last one being quite extensive.  In
early May, he had his last (hopefully) surgery.  The doctors removed
much tissue in his mouth, cheek, lip etc, and also the right half of his jaw
bone, which was replaced by bone from his lower leg.  Then he went thru
37 radiation treatments.

On the first of September, he noticed a lump (soft) behind his ear (the
incision for the removal of his jaw ended behind his ear).  By the time
he got into the specialist it had been growing for a week, and had a small
rupture where pus was oozing out.  They took a sample of the pus and had
it cultured and was set up to receive IV antibiotics at home (unsure of the
type of antibiotic).  The infetion didn't seem to repond, and they
returned to the dr for a follow up, 10 days after starting the IV antibiotics.

As it turns out, the dr had NOT been notified by the lab that the infecion
in his jaw was the e-coli bacteria.  He's now been admittied to the
hospital for treatment of this.
My question is how the heck can e-coli infect tissue other than the
digestive system?

Thanks
Mickie .....

The Nurse Responds,

You are correct in that this bacteria is found in the GI tract.  It can,
however, be carried away to other sites.  One that comes to mind is via poor
handwashing by an individual who made contact with the site of an operation.
I am not saying  that this is how the infection was spread.  Another
possibility is that the sample may have been contaminated while being
handled.  The doctor obviously does not believe this, as your loved on has
been hospitalized for treatment.  Please let me know how this latest problem
turns out.  You remain in my prayers.

Jolene Larkin RN

(Posted 9/23/99)

All Who Visit The Bulletin Board: Please Read! 9/25/99

-------- Original Message --------
Subject: BULLETIN BOARD -ATN-502
Date: Sat, 25 Sep 1999 12:36:02 -0700
From: Vicki Wilson <vlw427@earthlink.net>
To: webmaster@med-help.com

My name is Vicki and I am so blessed to have found this site.  I'm a "newbie" on the computer so surfing around this large site I am still learning the ropes of how to get where and find the information that I need.

First I would like to say that last Sunday (9-19-99) I was absolutely at the end of my  rope.  In so much pain and doctors who do not believe in treating Chronic Intractable Pain with narcotics, I had made the decision life was not worth living.  Living in a small town on the central coast of California, driving off a cliff is an easy thing to do.  My mind was nearly made up.  I saw "ask the nurse" service and thought "why not what do I have to lose?"  I did and I out poured my
desperation and fears to one of the nurses.  I quickly got a reply, not a generic reply but a personal heart felt one that has literally changed my life.

This site, saved my life last week and I want every person who surfs through here to know.  I felt I was a burden to my family and of no use to any one.  With the professional and caring intervention of med-help.com, I was able to continue to hang on.  I firmly belive that
God (if some prefer to call that a higher power, OK) but divine guidence led me to this site.  I know without a doubt my 3 daughter would be without a mother right now if it wasn't for this site and the help I received from your 'Ask the Nurse'

I was able to donate $8.00 and I pay more than that as a co pay for just one of