UPDATE PAGE ONE
--------August 11, 1998--------
I must take a few minutes to explain some things. This update will be lengthy because I must take time to explain my health conditions.
You must understand that I am not disabled at this point. I am not sick to the point that I am not able to work. I have worked regularly since returning from the Gulf War. My problems have been fatigue, muscle pain, joint pain, depression, insomnia, digestive problems, memory loss, general mental confusion, sinus problems, and light sensitivity.
All of these problems are characteristic of the Gulf War Syndrome. I know when you look at my web-site, you may question my mental capabilities. Believe me, I did not and could not prepare this site without a lot of outside help. I did the reading and the research, and some of my friends did the typing and arranging, as well as the programming to make this site work. To these special people I say thank you.
As noted elsewhere on this site, I told you that I had the lab test that Dr. Nicholson developed at my own expense. I have completed the therapy and this improved my quality of life a great deal. In the beginning I had expected to get better. I knew my health conditions over the last nine years because my health had begun to deteriorate over the last nine years. I had read and studied Nicholson's theories on the nature of the problems and what he said made sense.
As mentioned earlier, a blind case study is underway at Walter Reed Hospital in Washington, DC to evaluate the validity of Dr. Nicholson's theories. We may be 2-3 years away from a conclusion, according to my family doctor. He prescribed the doxycycline based on the lab tests and a consultation with Dr. Owens at the Persian Gulf Clinic at Fort Bragg, NC. Dr. Owens was aware of the testing procedures and the Nicholson diagnoses and therapies. He said he could explain most of the Persian Gulf Veterans' illnesses with a diagnosis of other naturally occurring illnesses. Dr. Owens also said that he had seen the Nicholson therapy help many veterans who had come through his clinic. My case was unusual to Dr. Owens only on point. I had a lab analysis of positive for micro plasma infection, but negative for the specific micro plasma infection strand "micro plasma incognitus". This strand is the one that Dr. Nicholson believes may have been altered to be used as a biological weapon. I have asked him to work with my family doctor, and I am completing the therapy on my own.
My experience with the Nicholson therapy is that it is at least part of the answer. It is a simple therapy but it does require some major lifestyle changes. By that I mean that you have change your diet, use vitamin supplements, plus the antibiotic for a length of time, and organize your life to a consistent routine. You must eat and rest regular hours each day, and the vitamin and nutrition supplements are used to counter the effects of being on the antibiotics for an extended period of time. Antibiotics are not prejudiced - sometimes they kill the good germs along with the bad. My experience has been one of great improvement, the fatigue and general aching and discomfort are gone. I still have some digestive problems, but not as much as I did while taking the doxycycline. According to Dr. Nicholson's research, the reason for the extended therapy is to lessen the occurrence of relapse, which is quite high if the therapy is not completed over a six month period. His experiments show that only 2 in 10 people relapse after completing the entire therapy.
Gulf War Syndrome and Chronic Fatigue Syndrome are extremely similar and could be mistaken for each other. The symptomology parallel each other very closely. When I received the second part of my lab tests, stating negative for micro plasma incognitus, I decided to complete the therapy on my own.
In preparing this site, I have relieved much of the stress associated with trying to deal with the unknown. And yes, stress is part of the problem.
One thing you should remember:
All drugs have side effects. Extended therapy can cause immunity problems. Psychology and attitude effect results. Read and study before acting.
I have been bombarded by these facts each time I talk to someone with access to good medical information about the Gulf War Syndrome.
In light of the recent Time/CNN debate ( June-July, 1998) I feel that I must ask all of you who read this to double check my information. A very dear friend of mine participated in Operation Tailwind. He was on the ground at the camp. What was said in the media hurt him very badly.
What we know about chemical and biological weapons used in the Gulf War is unclear. What happened in the deserts of Iraq, Kuwait, and Saudi Arabia is not short and sweet. It is in fact very complicated.
--------August 12, 1998--------
Most environmental exposures that are linked to birth defects cause a unique pattern of a specific defect. A group of highly qualified scientists helped to design what has become known as the National Birth Defects Registry. The Registry is operated by the Association of Birth Defects in Children, Inc. (ABDC).
To date, ABDC has collected data on 200 cases of Gulf War babies. ABDC has found some patterns of birth defects of the head, face, lungs, heart, immune system, and other problems.
Although that data raises some important questions, they do not yet prove any conclusive links to toxic exposures in the Gulf War. At this time ABDC does not know if birth defects have been caused by toxic exposures in the Gulf War. Therefore it becomes necessary for ABDC to request that all parents of children with birth defects contact them.
ABDC had detected some patterns in birth defects in children but the number of cases that have been studied are small. They need greater numbers to study in order to confirm or deny the research.
ABDC's information package includes: 1. What hazards were known to be present in the Gulf War theater. 2. Links between exposures and specific birth defects. 3. Charts and graphs of presently known birth defect rates. 4. List of media articles with dates, to help in research. 5. A birth defect survey form, on request.
--------August 15, 1998--------
DoD Database Helps Locate Gulf War Hospital Records
WASHINGTON, August 4, 1998 (GulfLINK) - The Office of the Special Assistant for Gulf War Illnesses announced today that it is offering assistance to those Gulf War veterans who have had difficulty in obtaining copies of their inpatient hospital records from the Gulf War. Collaborating with the Department of Veterans Affairs, the National Personnel Record Center and the Department of the Army, the office is creating a consolidated database to retrieve hospital records for all patients treated in Army, Navy and Air Force Gulf War hospitals. Veterans who are interested in securing information from these records are encouraged to contact the office to request a data search.
"Our goal is to inventory any known surviving hospital record from the Gulf War and create a database with names of all U.S. military and coalition forces and civilians," said Dr. Bernard Rostker, the special assistant for Gulf War illnesses.
"In the military, the disposition and storage of records is governed by each service, DoD regulations and statute. Medical records fall into two categories: individual health records and inpatient hospital treatment records.
Individual health records include clinic visits, diagnostic tests, immunizations, dental care, and, in some cases, discharge summaries of inpatient care. These records represent a history of a service member's medical care and accompany them throughout their military career. Upon a member's separation or retirement, the individual health record is retired to the Department of Veteran's Affairs Record Management Center in St. Louis, Mo.," Rostker said.
"Inpatient hospital treatment records are created each time a service member is admitted to a military medical treatment facility for care. These records document all treatment and procedures performed while the member is hospitalized. If the patient is evacuated to another facility, a copy of the treatment record accompanies the patient and the original record is retained with the hospital's files. Defense Department guidelines call for hospital in-patient treatment records to be retired within a span of four to 10 years, depending upon the facility's record disposition policy to the National Personnel Records Center where they are archived under the name of the hospital transferring the records."
"War often skews even the best policy", explained Rostker. "In a fast-paced, chaotic battle environment a service member's individual health record may be maintained by his unit and never reach the hospital administering care or the individual may receive treatment in a number of facilities. The in-theater hospitals did not have transcriptions, so discharge summaries were not done in most cases. Also, the in-theater hospital generally did not have copy machines, so when a patient was transferred to a hospital, the original record was sent with the patient.
"After the war, veterans seeking their medical records had to know the name of the facility that treated them during the war in order to obtain the record from the hospital or the National Personnel Records Center.
The need for a database grew out of the concerns veterans expressed to Rostker's team about locating their records. Many veterans thought that their records were lost or destroyed."
"The records were never lost or destroyed," explained Mike Boyle, an investigator on Roskter's medical issues team. "If veterans didn't know the name of the hospital that treated them, there was no way of finding their records."
To come up with a solution for veterans, Rostker's staff built on the work accomplished by the Department of the Army. The Army created an electronic database which cross referenced the patient's name and social security number with the name of the admitting hospital and dates of care for 10,500 in-patient treatment records before sending the records to the records center in St. Louis. This accounted for approximately 70 percent of the Army Gulf War inpatient records.
The Special Assistant's staff members flew to the records center in St. Louis to examine more than 2,000 boxes identified as Air Force and Navy hospital records from the Gulf War. The hands-on effort, augmented by Army reservists, resulted in the identification of 7,000 additional Air Force and Navy in-patient hospital records. Rostker's team added this list of individuals by name, social security number and hospital facility name to the Army's electronic database.
"We literally examined and reviewed every record," said Boyle, explaining how the team provided the bridge to unlock the information.
Rostker and his staff hope that this effort will assist veterans who require records to establish a claim with the Department of Veterans Affairs due to service-related illness, as well as those who wish to keep track of their medical conditions.
To obtain copies of in-patient hospital records from hospitals deployed to the Gulf, the veteran should call the Special Assistant's office at 1-800-497-6261 to request a database search. The office will complete a request form and forward it to the veteran for signature and mailing to the record center.
"Individual health records of former service members are archived in two locations," Boyle said. The VA maintains records for Army veterans discharged after 1992; and Air Force, Marine and Navy veterans discharged after 1994. To obtain copies, veterans may call the VA at 1-800-827-1000. For all other records, veterans should write to the National Personnel Records Center, 9700 Page Ave., St. Louis, Mo. 63132.
--------November 8, 1998--------
CDC Announces 1999 Research Planning Conference
On Oct 15, 1998, the CDC's National Center for Environmental Health posted an announcement of its 1999 conference on "The Health Impact of Chemical Exposures During the Gulf War" on the What's New page of its web site. A link to it is on the LINK PAGE. The conference will be held 2/28 to 3/2 in Atlanta.
This posting was made one day BEFORE the deadline for comment on a draft agenda that was released on October 8 by CDC's Dr. Drue Barrett to the various stakeholders who attended a planning meeting for this event that she hosed in July at DHHS headquarters in Washington.
Given that the government's web page announcement details both the conference format and its objectives, this suggest that CDC decided on these critical aspects of the agenda BEFORE even considering the public comment they were in the midst of soliciting. I'm greatly concerned abut the implications of this callous disregard for the public comment process, and note that those of us asked to comment have still not been told by CDC about the web page posting. I only discovered this by accident while searching the CDC website for information about the prevalence of chronic disorders in the general population.
The latest data I found, by the way, from the CDC's 1994 National Health Survey (National Center for Health Statistics Series 10, No. 193) show that the 5% prevalence of MCS reported by CDC just last month in JAMA among still active duty Air Force who were deployed to the Gulf War is so high as to rank 10th among ALL chronic diseases in the US adult population.
The latest government data on MCS reported by the VA population (presented by the VA's Dr. Kang at a scientific meeting on CFS in Boston on October 10) show an even higher prevalence of 14.9% among the deployed, which is higher than the prevalence of ANY other chronic disease among all adults in the United States. (The most prevalent chronic disorder listed in the CDC's 1994 survey is chronic sinusitis--a much less disabling condition--at 13.4%).
In my comments to CDC, I have asked that the results of ALL federally-funded research into MCS among Gulf War veterans (as well as federally-funded research into the overlapping disorders of CFS and FMS) be made available to the participants in this research planning conference, and preferably in advance.
The conference, by the way, is free and open to the public, bus is limited to the first 500 registrants (note that 75-100 of these slots are being reserved for invited participants). I claim the honor of being the first registrant! Although the registration deadline is not until February 5, I encourage independent researchers and others interested in participating to sign up as soon as possible.
This information was sent to my webmistress on October 23, 1998 by Barbara Herskovitz. If you wish to contact her, her e-mail address is firstname.lastname@example.org. This information, I understand, was forwarded to her by Albert Donnay of the MHS. His contact information, is as follows:
MHS Exec. Director
MCS Referral & Resources, Inc.
Phone: 410-362-6400 Fax: 362-6401
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