Registrations:

If you have not yet registered with OSU's data base, please take a moment to do so. A registration button is located at the top, right corner of the home page at www.TheNMO.org and you do not need to donate anything in order to register. All of your information is confidential and is protected by Federal HIPAA regulations.

Morgie of the Month:

We want to hear from you even if it’s just to vent. We understand your frustration with Morgellons. If you would to share your story, please send your story along with one or more photos to morgiemonth@thenmo.org

Clinician’s Update: Morgellons Observations and Treatments

In an attempt to keep the lines of communication open between all of us who are involved in some way with Morgellons disease treatment, research, or advocacy, we thought we'd send a quick update on what we are doing.

At this point, Ginger has evaluated close to 300 patients with Morgellons disease and is currently treating 125.(Many of these patients fall off the radar screen and are lost to follow up). Diagnosis is based upon 1) typical symptom presentation and 2) visualization, in the office, of sub dermal fibers using lighted magnification. Biopsies of 7 of our patients have been sent to Dr. Vitaly Citovsky's lab at SUNY and all have been found to contain 1) embedded fibers and 2) presence of Agrobacterium DNA. The significance of the latter remains to be seen.

Currently we are collecting data on the demographics and symptoms of these patients. We have not seen the consistent serological abnormalities that have been observed by others. The percentage of patients with positive serology for Chlamydia pneumoniae, CMV and HHV-6 is no larger than in the population at large (which ranges from 75% to 100%, according to the literature). What we continue to see is a very high percentage of tick-borne diseases in these patients. Ninety five percent have tested positive to at least one tick-borne disease through IGeneX laboratories.

Almost all patients have at least some response to treatment. Most respond well and improve gradually. About 10% have gone into total remission. Ginger's first Morgellon's patient, a fairly severe case, has now been off of treatment and symptom-free for 15 months. There have been only two cases that showed little if any response to treatment. Both of these cases are patients who have had the symptoms of Morgellons disease for over 25 years.

There have been no adverse reactions to the high dose cocktails of anti-infectives that we have been prescribing. Monthly blood work is checked and except for some mild, transient transaminase elevations and two cases of eosinophilia (which easily resolved) in patients who mistakenly took too much Stromectol, there have been no problems. The high dose anti-helmintics are tolerated amazingly well.

Treatment is targeted first at whatever tick-borne diseases are present. These tick-borne diseases are treated according to ILADS guidelines. Anti-helmintics are added, one at a time, to the antibiotic regimens. The three anti-helmintics that have been successful are stromectol, biltricide and albendazole. Each patient seems to have one that works the best for them, but it is variable from patient to patient.. Also, the anti-helmintics need to be alternated in two week pulses for maximum efficacy.

Treatment response has been highly variable. What works well for one patient, doesn't necessarily work for another. We've tried several anti-fungals but have not had success with these. The importance seems to be in staying the course and continuing uninterrupted treatment with high dose combinations of three simultaneous anti-infectives for at least a year. The treatment appears drastic, but desperate times call for desperate measures.

We feel that it is important for all of us involved in the Morgellons field to share information regularly so that we don't run the risk of repeating the proverbial story of the blind men each describing a different portion of the elephant! We are all in this together and we all benefit by keeping an open channel of communication. Let's continue to keep our focus on the common goal of getting this disease recognized and cured and not upon individual egos or turf battles.

Please forward this to other interested health care providers or board members. We were unable to obtain all of the email addresses.

In a spirit of collaboration,

Ginger Savely and Ray Stricker

Contact Us

If you would like to have one of our new tri-fold brochures on Morgellons, please send a legal size, self addressed stamped envelope to:

The Charles E. Holman Foundation

P.O. Box 92674

Austin, Texas

78709

If any of you would like to recieve this newsletter directly by email, or if you have information that you would like to be included in our newsletter, please send an email to Newsline@thenmo.org

We welcome your experiences and topics.

November 2007, Volume 1

Introduction

The Charles E. Holman Foundation is a non-profit organization supporting recognition and research of Morgellons Disease. The organization was founded in August, 2006 by the former Chairman/Board of Directors of the Morgellons Research Foundation, Charles E. Holman. This organization began as a grassroots activist organization but has rapidly developed into a multi faceted group dedicated to the support scientific research, medical education, and patient support. We have 501 ( c ) 3 tax deductible status filed with the IRS in the state of Texas.

In Memorium

The untimely death of Charles Holman, one of the founders and Chief Operations Officer of The New Morgellons Order , on September 6, 2007 has saddened us greatly. He was not a patient with Morgellons but began his mission in an effort to help his wife, Cindy Casey, who is a Morgellons patient. Charles quickly became an advocate for all Morgellons patients and worked diligently at the many tasks he assumed. Charles' compassion, determination, and creativity is evident on his website at http://www.thenmo.org . This website provides accurate scientific and medical information while supporting patient values. As an activist group, we are dedicated now more than ever to carry on Charles' mission.

Those of us fortunate enough to know Charles have suffered a huge loss. The entire Morgellons patient community has lost one of our strongest advocates. To honor and memorialize Charles, we have changed the name of our group to the Charles E. Holman Foundation. Our mission remains the same.

Charles wife, Cindy, is grateful to her "adopted" family, the Morgellons community, for the many kindnesses extended to her during this time of overwhelming grief. Many of you may remember the old Cherokeechas.com back when Charles and Cindy became Morgellons activists. Their relationship was special, as was evident to all in "Cindy's Diary" written by Charles to document Cindy's illness and her struggle in getting medical interest.

We are extremely grateful to those who have made generous donations to Oklahoma State University's Center for the Investigation of Morgellons in memory of Charles.

Recent Events:

October 27th and 28th 2007

Morgellons information booth at the recent ILADS (International Lyme And Associated Disease Society) conference in Boston, MA. Morgellons was very well received by this group of physicians as many of them are aready seeing Morgellons patients in their practice.

We distributed lots of informative info on Morgellons including tri-folds, CD's, and the recently published, peer reviewed article written by Ginger Savely, FNP-C and Raphael Stricker, MD. Randy S. Wymore, Ph.D., Director of Research at the Center for the Investigation of Morgellons at Oklahoma State University-Center for Health Sciences, provided a poster of his findings which we proudly displayed at our booth.

A Boston news crew filmed our booth and interviewed Dr. Greg Smith, Ginger Savely, FNP-C, and myself for an upcoming segment on Morgellons.

The ILADS and LDA (Lyme Disease Association) lectures were fantastic. Some of my favorites were Dr. Cameron's lecture on Evidence Based Medicine, Dr. Bransfield's lecture on psychotropic medication, and Dr. Martz which included the mystery of Morgellons. Of great interest was a debate between ILADS and IDSA guidelines in the diagnosis and treatment of Lyme Disease. Dr. Stricker moderated much of the event and the presidency was handed off to Dr. Daniel Cameron.

A wonderful reception was held for the new members as well as several mini-receptions held by the exhibitors. I am proud to be a new member of ILADS and I am grateful to be a part of this organization who still believes that it is really "all about the patient".

The Charles E. Holman Foundation had the opportunity to network with many other support groups and organizations that promote patient support and medical education. We feel this endeavor was a huge success and are eager to promote further education and support systems from all the wonderful contacts.

We have many photos and more info on this exciting event with which we hope to soon update the website. Thank you to everyone who worked so hard to make this possible. A very good time was had by all and the learning experience was invaluable.

Thank you everyone!

Cindy Casey, RN

Research Updates

The scientific research at Oklahoma State University's Center for the Investigation of Morgellons continues to expand.

The Center for the Investigation of Morgellons is looking at all aspects of this disease. The primary approach, as with all unknowns, is from an Infectious Disease standpoint. Hundreds of anonymous samples have been submitted for cultures for consistent bacteria and fungus. Cultures are still in progress. These cultures are not just from fibers, but from lots of specimens of a variety of body fluids, tissue biopsies, etc. The first part of any infectious disease research is to rule out any etiology known bacteria or fungal infections. Many other diseases have been proven to be difficult to culture so it's still a possibility that this could yield some results. PCR (Polymerase chain reaction) testing for a multitude of pathogens is also being implemented. Again, these anonymous specimens include skin scrapings, body fluids, and tissue biopsies which are collected by medical professionals in a medical setting. The mass spectrometry to determine the chemical composition and properties of the fibers is yet another aspect of the research.

Tax deductible donations can be made to the research at the Center for Investigation of Morgellons by clicking the Oklahoma State University Donation button at www.TheNMO.org

Scientific Research at SUNY, Stony Brook NY

Recent scanning electron microscopy has shown some incredible features of the fibers involved with Morgellons. We eagerly await publication of these very interesting images. FTIR (Fourier Transform Infrared Spectroscopy) and Raman Micro spectroscopy have been performed. Many of you are aware of Dr. Citovsky's work in agrobacterium as a possible association with Morgellons Disease. Please visit http://www.thenmo.org/citovsky.htm for more information on agro bacterium.

Tax deductible donations to this research by emailing ccaseyrn@hughes.net

Recent Morgellons in the Media

October 24th, 2007

Peer reviewed article published in Expert Review in Dermatology: Expert Review of Dermatology

Oct. 2007 , Vol. 2, No. 5, Pages 585-591

http://www.future-drugs.com/doi/abs/10.1586/17469872.2.5.585

Aug 6th 2007

Dermatoscope in the media: Filmed at OSU-CHS

Comment from Charles:

Dr. Randy Wymore, Dr. Rhonda Casey & Cindy Casey, RN, are all interviewed. BTW - my lovely wife Cindy will be the one wrapped in the throw away hospital gown... this, after days of trepidation over "..the perfect outfit for the TV interview".

Video and text:

http://cbs11tv.com/topstories/local_story_218170655.html

Upcoming Morgellons in the Media

The dates for upcoming media to be aired will be announced as soon as we have them. We anticipate news pieces airing in Oklahoma City, OK area and Boston, MA as interviews have been done. We are also eager for an upcoming article in the Washington Post. Discovery Channel is also working on a Morgellons project which will be announced as soon as we have information.

Registrations:

The registration process is important. It gives researchers information on the geographical and other epidemiological aspects of Morgellons Disease. If you have not yet registered with OSU's data base, please take a moment to do so. A registration button is located at the top, right corner of the home page at http://www.thenmo.org and you do not need to donate anything in order to register. All of your information is confidential and is protected by Federal HIPAA regulations.

Practitioner's Discussion Forum

We apologize to those of you reporting difficulty in joining this Clinical Discussion Forum on our website. Many of you have experienced delays in getting a 'password' to participate. Since the loss of Charles Holman, our new web expert is experiencing some problems accessing the control panels. We hope to have this forum up and running soon in a functional, user friendly mode that will allow easier access for clinicians who wish to join.

As a reminder, this forum is for clinicians only. The goal is to facilitate open discussion of various aspects of Morgellons Disease among those who are licensed to treat. Submission of credentials will still be required in order to access this forum in order to assure private medical discussions.

Thank you for your patience!

Morgie of the Month:

Be sure to meet November's Morgie of the Month, Kelly Pickens. Her story reflects her energetic and playful personality as well as her relentless desire to help get Morgellons Disease the recognition and research it deserves. This feature of our website has been very successful in allowing others to know that they are not alone. If you are interested in becoming a future "Morgie of the Month", please email your story and photos to morgiemonth@thenmo.org

Contact Us

If you would like to have one of our new tri-fold brochures on Morgellons, please send a legal size, self addressed stamped envelope to:

The Charles E. Holman Foundation

P.O. Box 1109

Lone Star, Texas

75668-1109

We are extremely grateful to Katie Corkren for her graphic art design talents in putting these informative tri-folds together!

If any of you would like to recieve this newsletter directly by email, or if you have information that you would like to be included in our newsletter, please send an email to Newsline@thenmo.org

We welcome your experiences and topics.