Letters We Have Received
Dear Prof Nicolson;
I was fortunate enough to swap e-mails with you in October last year, and I
want to thank you as the information given to me has really changed my
life. If I was a skeptic before, having used some of the dietary supplements
suggested (particularly the Raintree myco extract), I can only say that I now
believe everything you have written on the subject. Itís worrying, however,
that this sort of stuff is out there and yet every government and health
authority denies its existence, and people suffering chronic fatigue and
other illnesses are simply offered counseling for mental problems rather
than clinical help.
In the UK even having a discussion regarding mycoplasma with a physician is
Impossible. They simply do not believe that this "harmless" substance could
be at the root of anything. Therefore, your internet resources have been of
Once again, thank you for the treatment suggestions you have provided, it really has
changed my quality of life, and I hope that the message you are spreading
gets to a wider audience and that more people stop accepting the constraints
of their "conditions" and start questioning their diagnosis - and that
governments start admitting that this stuff is out there!
Dear Dr. Nicolson,
My doctor would not consider treating me, because I didnít have a positive test for Mycoplasma (I tested ďequivocalĒ to Mycoplasma); however, I had symptoms consistent with such an infection, which were worsening. In addition, I had moved heaven and earth to find a diagnosis for my condition.
The Mayo Clinic in Minnesota had been unable to give me a diagnosis for five years. I had developed severe pulmonary hypertension, new onset asthma, tremors, involuntary movements, neuropathy, Raynauds, sleep apnea, cardiomegaly, several episodes of buring neuralgia, severe back pain, low cortisol secondary to non-Addisons, hypoadrenalism, hearing disturbances, extreme fatigue, weakness, etc.
Shortly after taking the doxycycline, my pulmonary pressures began to decrease. At that point, my doctor decided to prescribe the doccycline for me. Today, my pulmonary pressures are 38mm post-exercise or almost half of what they had been. My asthma and sleep apnea have disappearedótotally! I am happy to relate that I am doing much better and have returned to work.
My best friends also had symptoms similar to mine, although some were different. She did test positive for mycoplasma and started a course of doccycline. Her pulmonary pressures have returned to normal, and she is also much better.
I cannot thank you enough. I have purchased your book, Project Day Lily, and know that there have been problems in Texas. I became ill at MD Anderson while my husband was undergoing treatment. Both my friend and I worked at a state facility which houses a prison. Both of us seemingly became ill after contacting mononucleosis in our forties several months apart.
We have both continued to experience neuropathy and I, Raynauds, mild-to-moderate pulmonary hypertension and tremors, as well. She has taken doccycline for about 4 months while I have taken it about nine. I will add that we have not taken it continuously. In error, I advised her to take it six weeks on, 2 weeks off. I have taken it for the last two months continuously as I had no adverse reactions.
She does have diabetes and impaired functioning of her kidneys (pre-ATB treatment) at 50% eachódecreased functioning that we wondered could be caused by mycoplasma, as her doctor doesnít attribute this to her diabetes.
Your advice would be greatly appreciated so we can discuss treatment options with our doctors. In addition, both my friend and I will follow your recommendation and purchase Propax/NTFactor.
Thanks again, Dr. Nicolson. I know you have saved our lives.
San Angelo, Texas
Dear Dr Nicolson,
I understand that you are probably a very busy man, so If you donít get a chance to reply, I completely understand. To cut a long story short, I just wanted to thank you, and your colleagues for the research they have done into Chronic Illnesses, and your discovery as regards Mycoplasmal infections. Iím sure you probably also get plenty of emails and letters expressing thanks, but I wanted to let you know how much I personally appreciate your contribution to this research, especially in light of the difficulties I understand you have had in pursuing it!
Thank you again! If it wasnít for you and your work, Iíd still be lingering without a diagnosis, and spending the best years of my life confined to bed, with a brain that didnít work.
Sincerely and Best Wishes,
As with all things, truth is difficult to find since nothing is purely black and white and, as you said, hindsight is always 20/20. Your are quite right that I did my very best to lead my troops well and particularly to accomplish our mission quickly and with the absolute minimum of loss of human life and injury on both sides of the battle lines. The fog of war is always present and every commander must recognize that he or she does not have perfect information that is given to them by many different agencies. But in the final analysis, he or she are the ones who must make the decisions and bear the responsibility.
I am happy to see that you are involved in major efforts to defend our nation, our armed forces, and our citizens from bioterrorism. Itís truly a daunting challenge that I feel will only get worse in the coming years. Thank you for your efforts on behalf of all of us.
H. Norman Schwarzkopf
Dear Dr. Nicolson,
My name is Margie and I was the founder and leader of our local FMS/CFIDS group here in Texas in 1994. I first read your work in FMS/CFIDS and mycoplasma infections in 1996. But it took me until the year 2000 to find someone to test me and give me the antibiotics. I want to thank you for your work on this illness and all you have done for those that are ill with this infection. I am 75% better in just 14 months of treatment. GOD BLESS YOU!!!!
And all of your staff and family. We have about 40 others in our group so far doing this treatment, and 39 out of 40 were positive for mycoplasma and all they are all seeing good results on the antibiotics. Moreover, we have had over 600 people attend our group since 1994. We in the FMS/CFIDS population of Texas are trying to get more doctors involved in this testing and treatment. We have one doctor that is testing and treating but not on anyone's network of insurance. We have another doc testing and treating but will not file anyone's insurance. This is all O.K. with me, but the more docs we get involved the more people will be getting well.
Recently I traveled
to my daughter near Kansas City, MO. and I drove 6 hours, and my other
daughter drove 5 hours. In the past when I was real ill I had to lay down
in the back seat during most of the trip. I also traveled to Colorado,
and next month I'm going to Wisconsin (I'll fly for that one). But without
this treatment this would not have been possible. My pain level has dropped
from a 7-9 to a 1-2, and I am now off 5 medications that I previously
required. Thank you and your staff again and God Bless!
I want to express my appreciation to your staff at IMM and yourself for the great research and efforts that have been conducted concerning Gulf War Illness and the associated affects of the same caused by Mycoplasma fermentas incognitus and Brucella melitensis. As you are aware, I found to be positive by three independent doctors outside of IMM with both of these pathogenic species. When I started Doxycycline treatments 99% of all my aliments of ten years have totally disappeared within 9 weeks of taking the drug.
Unfortunately, I have some very disturbing news to report as well. This week I reconnected with several combat associates from 3rd Armored Division, only to learn from them, that the US Army tested them positive for MF(i) and Brucella in 1992-1993, confirmed Bio-Germ Exposure within 1BDE/3AD and 3AD Combat Avn Bde, treated them with Doxycycline, then medically discharged them from the U.S. Army. I have approached the US Senate and LTG Vesser directly with this information, begging the question why DOD/OSD/DVA did not inform other officers and soldiers that Bio-Germ Exposure occurred in the Gulf War and did not inform the rest of us, while we have suffered for years with Gulf War Illness created by these pathogenic bacteria? These Senators and LTG Vesser have not responded to my emails nor my phone calls to address this issue. Obviously DOD/OSD has known and lied for years about these pathogenic species, that we were in fact exposed, became sick from the same and did nothing to inform us or the American Public. My own country, which my family has served since 1737, was going to let me die off for a lie.
Such actions are sinful if not criminal and I look forward to the day that everyone in America finally knows the truth as I now do. God-bless you and your staff for saving those of us that you have and I feel all GWI VETS should find strength in the 41st Psalm as we are cleaveth with this evil disease.
With the most enduring respect, forever indebted,
Dear Dr. Nicolson,
I would just like to thank you for your research. It has saved my life. Before I started the antibiotic protocol, I showed several signs of Lupus. I wonít give you my whole life story right now, but Iíve on doxycycline for 9 months just recently adding Cipro. I feel that my problems began with Chronic UTIís that I never fully cleared up for 5 years.
My only lingering Lupus symptoms are a tingling in the back of my neck, and my ITP. I know it takes time, and these will eventually go away also.
Thank you so very much for your efforts. You have saved my life. I am constantly telling people about this protocol. If you are ever in the Southeast for a seminar on your research, please let me know. I am in the Atlanta, GA area.
Thanks to everyone. If it had not been for you and Dr. Brown and your research, I donít know where I wold be today.
Thank you, thank you, thank you.
Dear Prof. Nicolson,
I am the VAMC Registered Nurse who contacted you over a year ago regarding the organism called Mycoplasma. There were two nurses exposed on Feb. 1991, and I was one of them. My blood test came back from California positive for Mycoplasma Infection (1998), and I went on a program of Doxycycline and Famvir, with Augumentin between cycles. I started the program on March 1999, and it has been over a year. I can not express to you how it has changed my life. The severe total body spasms (including the head) have stopped. I do relapse on rare occasions, after long airplane flights, long stressful drives across the country, and if my colon becomes infected (repeated). I still have signs and symptoms of the infection in my spine, especially the C-2 area, and the base of my head, although it is like a roller coaster, with some days being much improved over other days. My plans are to stay on the Doxycycline and Famvir cycle until next March. I know the organism attacked my G. I. system, Endocrine System (thyroid), and my Central Nervous System. I know I will have permanent deficits, but that is O.K, I am improving. The other nurse was far more ill. Her neurological problems left her blind in one eye, at times, irregular heart beat, and other neurological problems (increased spinal fluid pressure). She then developed Cancer, fought for her life, and died March 9, 2000. She was 42 years of age, and knew about her toxic exposure. I am very interested in your research article "Gulf War Illness/Myalpic Encephalomyelitis/CFIDS/ Fibromyalia" I would like to send money for the article if I know where to send it. I am learning about the pathogenic, toxic, organism called Mycoplasma, but information is limited on the Central Nervous System. Prof. Nicolson you have saved many lives and especially the quality of those lives, as an individual I can not thank you enough.
What a wonderful FRONT-PAGE article there was in the San Diego paper today. I doubt if the DOD research grant is very much, but it is a beginning. Congratulations with sticking with this for all these years.
I am one of the cured, having had m. pneumonia for six years before getting tested for mycoplasma. I am now negative mycoplasma in the blood, according to PCR testing. After my husband and I both recovered from the chronic infection, we went ahead with our In Vitro Fertilization Pregnancy plans. I am proud to announce that I had a very healthy, problem free, pregnancy and delivered 5 and 6 pound TWINS last December. I should also mention that I am 48 years old, and this was my first pregnancy. I believe that the end result was that the mycoplasma infection seemed to actually strengthen me.
Best of success in bringing even more attention to mycoplasma.
My name is Kathy C. from Burbank, California. Thank you. Thank you. Thank you for the research you and your colleagues have been doing. My husband had fybromyalgia and chronic fatigue for the past year and a half. Itís been so awful! He was recently tested for mycoplasma from a sample sent by Dr. Stephen H. in Pasadena. Sure enough he was positive for Mycoplasma fermentans. He has started antibiotic treatment and we are quite hopeful. You truly have found your life calling as a researcher. We are very grateful to you and those who have worked with you for pushing through with this research despite all the controversy. Itís funny; many people I talk to with fibromyalgia about your research are skeptical. I then have to go through this whole process of convincing them and getting them to contact the Institute. I am a mission these days to spread the word about mycoplasma.
Anyhow, here is some helpful information to possibly add to your treatment recommendations and research ideas. My husband began on a blood type specific diet as recommended by his nutritionist, Dr. Marion K. of Palmdale, and as recommended by the book "Eat Right for Your Type." His energy level increased significantly! This was prior to the antibiotic treatment. So consider that a blood type specific diet may be quite beneficial for people with blood infections. Just a thought for your research studies. Iím about to complete my Psy.D. in clinical psychology so I understand the whole area of research. I would encourage you to possibly include this recommendation in your list of nutritional suggestions for discovery.
Thanks againÖ Feel free to contact us if you have any questions.
Several months ago, I read the article about your research in Popular Science Magazine. The article was of great interest as I suffered from PTSD and Chronic Fatigue syndrome for four years. Before the illness, I was healthy and happy, but the illness made me so sick, I had to leave work on disability. Life as I knew it ceased. Doctors told me I probably had no hope of recovery because the illness had gone on for so long.
I never lost hope though. When I read the article on Gulf War Illness, I recognized my symptoms immediately. I talked my doctor into trying the doxycycline treatment. He reluctantly agreed, being both skeptical for the outcome, but sympathetic to my desire to end my suffering. At the time I sent a note to you and was grateful that you sent me a regime to follow.
Within a short period of time I began to feel better. However, within three weeks into the treatment I had a terrible reaction to the doxycycline. I got a rash all over my body and gastrointestinal problems. The doctor told me to stop taking the medication and gave me minocycline instead, but the symptoms of PTSD and Chronic Fatigue returned.
I felt that my only hope of having a normal life again was to take the doxycycline anyway, and I resumed, but this time had no reaction. I have taken it now successfully for three months without adverse effect. I suspect that the "allergic" reaction was not a reaction to the medication at all but as the consequence for the organisms dying off.
Today, I feel almost 100% cured. My doctors are stunned. I have made numerous copies of your articles and have distributed them widely.
The implication of your finding has tremendous potential for helping people currently floundering in the mental health system with a diagnosis of PTSD. I ask that you consider broadening your research to include non Gulf War vets who share similar symptoms. I feel that the cost of my illness was prolonged stress which lead to the proliferation of the organisms. Would you look into stress as a cause into the growth of the organisms?
I wish you the best of luck with your research. Thank you again for giving me back my life.
Dear Professor Nicolson,
Thank you so much for sending the information so promptly when I requested it. I printed it out, along with other related articles by you from the rheumatic org. website, and presented it to our family doctor yesterday. He received the information very positively, and was most interested in your work on mycoplasma; he currently tests all patients whom he hospitalizes with heart disease and pneumonia for mycoplasma. He is going to try longing term antibiotic therapy on my mom for her polimyositis and possibly testing for mycoplasma next week.
Your information was so helpful and I left it with him to read and share with the other doctors in that practice. Now I will search for your animal-related articles to send to my friend, who is a vet, as Iím sure heíll be very interested in the role of mycoplasma and your research. Thanks so much, and I will drop a note once in a while to keep you posted of my momís progress. After three years on methotrexate and prednisone and suffering many side effects and growing steadily worse, I think she will begin to improve slowly. I also started her on the nutrition plan, vitamin B-complex, C, E, folic acid, biotin, bioflavoids, zinc and beta-carotene. Even after going off the methotrexate for just a week, and beginning the therapy yesterday, her depression is liftingÖshe has hope and emotionally feels better already! Thanks! I am also passing the GWI info on to our sons; they may be interested in being tested for mycoplasma, especially one of the wives that is 4 months pregnant. I am looking into the effects on pregnancy and the unborn child; any research there?
Thanks again for your interest and your prompt attention; I know your time is very valuable and I appreciate you answering me so much!
Dear Dr. Nicolson,
Words cannot express the thanks and gratitude that my family and myself feel for you and your staff.
When I became sick there was no one to help, there was no one who understood my illness. We are so thankful that a peer at work overheard my condition that had been following your protocol and research. He put us in touch with your office. I had been sick for some time and only you understood the complexity of my illness. Only you had the right answers. Prior I had been getting very ill and not receiving the proper treatment. In your recognition of my autoimmune and allergic disorders in which are common complications of the illness, you sent me Dr. William Rea of Dallas for additional evaluations and treatments.
I am proud to say that we have been living a very healthy active life once again. I now understand the hazards of chemical and biological warfare. As well as the hazards of pollution I an environment, our homes and workplace. It is vitally important that people suffering with this illness have clean air, food, water, exercise, and sauna, take supplements and identify hidden food allergies and intolerance.
For those who donít know me, I am a pilot for a major US airline and an ALPA carrier. There is no question in my mind that you Dr. Nicolson as well as your colleague Dr. Rea as a team gave my life back to myself as well as my family. The Medical community could learn much from you, as I found out first hand that they have much to learn.
In closing Dr. Nicolson I solute you and your colleague Dr. Rea. Without the both of you, I do realize that I would have never made it through this. The two of you are the greatest men I have ever known. It is my hopes to one-day thank you in person and shakes the hand of the man that I owe so much gratitude. The help and guidance you so graciously gave me is priceless and for that I will be forever thankful.
Capt. Darren J. V.
Dear Professor Nicolson,
I am a 65-year old woman who has had severe muscle pain for about 15 years. A few years ago, my problem was diagnosed as fibromyalgia. The pain is caused by muscles in chronic spasm.
In response to a talk given last August by Dr. Ashanti L., whom I believe you know of, I have been taking antibiotics for some months now, and I am at last feeling great relief. But I donít know when to stop taking the drug! Having bungled the protocol rather badly for the past few months, as I will explain, I need your advice. (My doctor is not very knowledgeable about this disease or antibiotics, being a naturopathic physician; but heís cooperative and he listens!) I would be happy to pay for your advice as I would an office visit.
Hereís my story: I started on Doxycycline on August 26, 1997. In 2 weeks the pain in my neck and shoulders began to diminish incredibly. However, the medication did not agree with me, causing nausea and a general sense of illness. At my doctorís advice, I stopped taking Doxycycline for a couple of days, which I very much regretted, as I got a bad relapse and redoubled pain. So I stayed on it until September 28, when I was forced to lower the dose. Another very bad idea! Great pain.
On October 2 I started on Biaxin at 500 mg/day, as advised by you in your description of this drug. It didnít help. So I called Dr. Ashanti L. on October 28 and found that I should have been taking 1000mg/day. So I increased the dose. By early December, about a month later, I was beginning to feel much better. I have not dared to stop the pills between six-week courses, so I just kept on taking them.
Edith P. S.
Dear Dr. Nicolson,
My name is Pete Zalewski, I was a Special Operations Intelligence Officer during the Gulf War and I believe I may have contracted the Mycoplasma you suspect maybe-causing problems in some veterans.
I have had in a moderate to severe degree most of the symptoms you associated (in your letters/articles) with the mycoplasma. I have consulted numerous active duty military, veteransí administration, and civilian doctors to little effect as far as getting a diagnosis everyone agreed there was a problem, no one was able to find it. However, after noticing significant improvement with certain antibiotics, such as tetracycline and minocycline, and having received a package of material from your office, I decided to try the doxycycline regimen you prescribed to others. I am writing you because it worked "as advertised".
My symptoms over the past two years included a constant sore throat (with cobblestoning), night sweats, shortness of breath, dizziness, joint pain, short term memory loss, headaches, double vision, diarrhea, and other bowl problems, skin inflammations and severe moderate fatigue. My whole immune system seemed effected. I mostly tried to ignore the symptoms but sometimes I simply had to visit doctors to get some sort of relief. When particular antibiotics were prescribed my symptoms, almost all of them would subside. Some antibiotics did not help at all. When the macrolide erythromycin was prescribed because of throat inflammation I felt near fully recovered in about a week and a half. Nevertheless, after going off antibiotics the problems would eventually (in a month or two) revisit, and when I resorted to antibiotics again the problems went away-I noticed this same cycle occur at least seven times over two years. I did not form any conclusions except that when an attack occurred I needed to go on certain antibiotics in order to continue functioning. Since no diagnosis, after relatively extensive blood tests and cultures, could ever be made, I simply continued to do what worked. At the times when I did not have the right antibiotics available I would usually end up in bed a few days, and when I felt bad enough I would get a prescription. I did little research on Gulf War Syndrome (back when a main suspect was leishmaniasis), but I didnít pursue this because I was able to manage the symptoms.
I became aware of your suppositions relating the Gulf Syndrome and the mycoplasma when I was visiting Dallas this September and heard a TV reporter talking about your work. I contacted your office (on 19 Sept.) and you mailed me an information package. When I saw your reference to Special Forces members (in some of the new articles) and the letter you received from Darrell____ I was shocked because I worked with a large number of Delta Team members and the way Darrell described his job I probably had at least incidental contact with him or the areas he was in. Putting that together with the matching symptoms (I even noticed, like Darrell, that flying in aircraft and dealing with pressure/altitude changes makes it very likely that the symptoms will occur), the efficacy of particular antibiotic treatment, and the fact that I had frequent contact with all sorts of suspect things (SCUD missile parts, Iraqi prisoners, etc.) I saw too many pieces fitting together to treat this all as mere coincidence.
Over the past two months Iíve tried doxycycline, noted my progress and symptoms very carefully, and have seen the symptoms subside with this treatment. They appear to recur a while after treatment stops and likewise die down if I treat again.
Due to this, as well as the fact that the local VA hospital has had no luck diagnosing my problem, I would like to come to Houston as soon as practical to get tested for the mycoplasma. I am assuming I could be tested there. I know you are working on a new test, and will likely differ to whatever suggestion you have concerning getting tested. I can be at Houston at any time, and although I would like to be tested soon, I will also be in your area all summer in the CPE program at St. Lukeís Episcopal Hospital.
If I do test positive, and even if not, I have some information concerning how this mycoplasma and/or other pathogens may have been introduced to the U.S. Forces, which I would like to share/discuss with you.
Besides getting back to me concerning a recommendation for testing, I also would appreciate if you would forward the enclosed stamped envelopes/letters to any special forces/special operations/Delta team members you have been working with. I am providing them a description of my locations and duties during the war, and am interested in comparing locations and possible exposures with them. Feel free to look at the letters or attach a personal note to them. If you mail them off, they can decide of they would like to write back to me.
Despite whether or not we are able to help each other, I want to thank you for the interest you have taken in the vets and others who are having difficulties. It is admirable that you have been bold enough to make your findings and suppositions known, especially in light of the resistance your conclusions have and will come up against.
With Best Wishes and in all Sincerity,
Peter L. Z.
Here is a brief summary of my experience with the "Desert Storm Syndrome."
April 1991: Returned from Desert Storm after serving with a joint Special Operations unit in various capacities in various locations throughout the Southwest Asia theater of operations, including flying in several missions.
June 1991: After 1 week of high fever (101-103), severe stomach cramps, dehydration, headaches and joint pains I was admitted to Womack Army Hospital. At first I was diagnosed with appendicitis, however shortly before surgery it was discovered that my white blood count was extremely low, which cancelled my surgery and led to further testing. I was tested for various diseases, including malaria, etc., but all test proved negative. After two weeks in the hospital my fever subsided, as did the stomach cramps and joint pains. I was released and undiagnosed and about forty pounds lighter.
July 91 till Feb 94: reoccurring fevers, stomach cramps, dehydration, headaches joint pains (lower back most prominent, shoulders, knees, arches of feet, knees, fingers, also joints will swell) double vision (constant), skin rashes (similar to sunburn), headaches, fatigue, loss of endurance, pains in my heart, short term memory loss, and kidney pains. Symptoms occur randomly, without warning and vary with intensity.
Feb-Jun 94: Started taking doxycycline at the peak symptom intensity and almost immediately all symptoms would subside. Upon reexamination of my vision, the double vision has decreased to less than half of the original severity, although after having an M.R.I. (which was giving to rule out MS), it was noted that I have a lot of scar tissue of unknown origin around my eyes. Previously opthamalogist from Chapel Hill, Duke University and Womack Army Hospital had all agreed my double vision would continue to degrade to the point requiring eye muscle surgery for vision realignment.
This antibiotic doxycycline has caused zero side effects and every time the symptoms occur and I take the doxycycline the symptoms are gone in 2 to 3 days. The symptoms still reoccur, however at a significantly lower level of intensity. I was treated for all symptoms by the military prior to Feb 94 with absolutely no results. The symptoms would simply diminish on their own and reoccur at will. However, after flying in aircraft usually the symptoms were more intense. My white blood count remains at a low level to this day.
I do not "believe" that doxycycline has contributed to my recovery and return to normal life, I know it has. I have had every conceivable test conducted, treatments, etc., known to the zero answers and zero relief. Your recommendation for the antibiotic and explanation of this disease has been 100% effective. This is not a theory, it is a fact. Thank you again for all that you have done, I owe you my life.
I am an Active duty Army Captain. I served our country in Operation Desert Shield and Storm. I was with HSB, 2d Battalion, 320th Field Artillery Regiment, 101st Airborne Division (Air Assault) out of Fort Campbell, Kentucky.
Before leaving the desert, I received a Gamma Globulin shot. While in Saudi Arabia, I received Pyridostigmine tablets (3x per day for six months), Malaria tablets, a Botulism injection, and an Anthrax injection.
Our unit was in Saudi Arabia from September 1990 to February 1991. When we deployed into Iraq, we stayed in Iraq for 35 days. I returned home in April 1991.
While I missed my family, our unit did not come under fore or even see any enemy soldiers. Basically, we encountered nothing I would call stressful.
Six months after returning from the Gulf, my family seemed to be sick a lot with flu-like symptoms i.e. coughs, colds, sore throats that we couldnít shake, etc. I had skin rashes and terrible headaches. For a long time we wondered what were we doing wrong. We ate well and got enough rest, took vitamins, and still continued to get sicker and sicker.
My wife had gynecological problems, including a swollen uterus and thyroid. My daughter (born before the war) had nagging coughs and colds, rashes, and failed to gain weight. Myself, I had the headaches, stomach problems, rashes, etc. Our cats had rashes and swollen stomachs. We met other families having the same problems.
The military doctors invited us to take part in the Comprehensive Clinical Evaluation Program (CCEP) at Walter Reed Army Medical Center. I took all of the tests, my wife took most of them, my daughter was seen, and our cats were tested. We were given no diagnoses or treatment.
We heard about Dr. H in New Orleans and his treatment with antibiotics. He was unable to treat us and we couldnít to treat us and we couldnít find any civilian doctors, who were familiar with our disease, so we started getting some of the antibiotics, such as Augmentin penicillin and Clindomycin and treating ourselves. While on antibiotics we were feeling much better. However, we only had a 10-day supply and soon the symptoms were back.
MG Blanck at Walter Reed agreed to see us and we told him that we felt that the antibiotics were helping us. It is important to note that some antibiotics did not work as well as others, regular penicillin, for example, was less effective than the Augmentin used by Dr. Hyman. The military agreed to give us a trial of Septra, an antibiotic used for urinary tract infections, but it had little effect. Our civilian veterinarian had prescribed Doxycycline for our cats, and they seemed much better. We told Dr. Chung (our military doctor) and he said "thatís interesting, we will be putting everyone on Doxycyline soon". We were so happy to hear this, but two days later he told us "I wasnít supposed to say that yet." The next day after we all went to a meeting with Congressman Buyer from Indiana, we asked Dr. Chung again and he laughed, saying "what antibiotics?"
My wife was getting sicker and sicker. The pain was so severe in her uterus that she had to stay in bed. We had been praying for answers and then we were told about Garth and Nancy Nicolson and the work that you had been doing on our problem.
You responded to our phone call with your faxed information sheet. We went to a civilian doctor and got Doxycycline and began taking it.
All of our family is doing much better. We have normal bowel movements, decreased swelling, more energy, less nausea, and our daughter has gained weight. In short, we are so much healthier. We made copies of your sheet and handed them out to many other sick soldiers and families we know. The military still refuses to give medicine, but we have managed to get it from kind civilian doctors. Three other active duty families we know are now getting better by taking the Doxycycline as you recommended.
We donít know why Walter Reed Army Hospital is refusing to help soldiers. Those doctors have done some horrendous experiments, taken body parts from people, taken cysts from people, offered to put people in arsenic comas and then want to see if they could get them back, but they refuse to give Doxycycline saying that they donít want to "hurt" us. We do believe it is a small group who are because any of the military doctors who tried to help us were reassigned or frightened, or were left out of the loop. We have given up on the system at this point.
Our family is better, our friends are better. Soldiers have to help each other by spreading the word.
Thank you Garth and Nancy Nicolson for having the courage and the compassion to help us.
Charles, Julienne, and Lindsay H.
Dear Dr. Nicolson,
I am 56 years old and am a wife, mother and grandmother. I am a civilian and have, to my knowledge, never been around anyone who fought in the Gulf War.
My illness began suddenly in February 1997. I went to bed one night feeling well, and awoke the next morning suffering from severe fatigue. The fatigue lasted for about four weeks. It was extremely difficult to get out of bed and just go through the normal day, much less work at my job as office manager. I consulted two specialists in San Antonio, Texas. These doctors ran blood tests on me but were unable to "find anything wrong". It was suggested that I start an antidepressant.
The fatigue lessened in March, and while I did not return to my former healthy condition, I felt better than I did in February.
In April, I developed severe aches and pains in my muscles and joints. The muscles in my legs felt as if someone had washed them placed them in a dryer, and they shrunk. To travel to Austin (3 hours away) to see our children was torture. I usually spent the next day in bed. I sometimes wondered if my bones had broken and no one had told me. Although in pain, I continued to walk two miles every afternoon with my husband. Although it was very difficult to start exercising I found that in just a mile I began to feel better. This was probably the only time of the day that I felt good. The feeling of wellness only lasted while I was walking, and aches and pains and fatigue would continue at night.
My local physician, Dr. Karole B., ran more blood work on me and I was diagnosed with Epstein-Bar virus. I was relieved to finally have a name for my problem.
My symptoms were not improved by June, and I sought the help of Dr. Dor B. of Fredricksburg, Texas. Dr. B. is an allergist and works with many patients suffering with Epstein-Bar. After an exam, more blood work and extensive allergy tests Dr. B. put me on an allergy program. He also admitted me to the hospital for a 23 hour I.V. treatment of gamma globulin, vitamins and antibiotics. I have had one other hospital treatment and am conscientious about my allergy program. Although I did not catch any bug that was going around, I did not have relief from my symptoms.
At this point my symptoms had spread to include headaches, swollen lymph nodes, sleep problems, and sound intolerance, motor disorder, confusion, rapid weight loss, shaking, weakness, low temperature (97.4), chills, metallic taste in mouth, pain in my spine and shoulders and loss of balance. I did not have one second of the day when I did not suffer from at least one of the above.
In December of 1997 I became a patient of Dr. Patricia S. Her immediate blood work showed that my t-cell count was 99. She diagnosed me with Chronic Fatigue. Dr. S. started me on a weekly injection of 1cc glutathione, with office check-ups, every six weeks. My T-cell count rose to 296 in February, only to start falling again. At last count it was 94.
In June of 1998 I read a newspaper article about a test for Gulf War Illness. The article mentioned Drs. Garth and Nancy Nicolson and their study of Mycoplasma. During my July appointment, I asked Dr. S. to test me for mycoplasma. Two weeks later Dr. S. informed me that I had tested positive for mycoplasma, and she started me on doxycycline.
My husband obtained information on mycoplasma from the Internet, and I e-mailed you at your office in California to get a detailed treatment plan for mycoplasma. I learned that Dr. S. had put me on the right antibiotic, but not the correct duration. I asked her to treat me as suggested by you, Dr. Nicolson, and she agreed to do so stating that you were a "pioneer I the field of mycoplasma".
I have finished one six-week cycle of doxycycline and two weeks of augmenting. I am now I the second week of my second six-week cycle of doxycycline. After 7-10 days on the doxycycline I lost the feeling that I was dying. Progress was slow, but I began to tell the difference in my symptoms. The muscle and bone pain was better, I was able to tolerate sounds again, and the weakness in my legs was gone as well as the metallic tastes I my mouth. After 4 weeks I felt even better. The fatigue and headaches that I had suffered from was nearly gone. I actually had energy through the entire day. The confusion, shaking, motor disorder, and pain in my shoulders and spine were gone, along with the loss of balance.
I really noticed a difference in my symptoms during the two weeks of augumentin. Of particular improvement was the swelling of my lymph nodes in my groin. I seemed to have more energy while on the augumentin. I have had one serious headache since starting the antibiotics, but it was not as severe or of the duration as before.
I do not believe that I will ever be able to express my gratitude for the miracle that you have given me. I donít know what the future holds but I have great hope that I will make a full recovery. I am so thankful to be able to once again get up from the bed, or the couch, and participate in the lives of my family.
Dear Dr. Nicolson,
There are not enough words in the English language to thank you for what you have done to help me as the spouse of a Desert Storm Veteran. When I first spoke to you on February 29th, my doctor had me on so many different types of medications that I to keep a schedule of which medicines to take in order to treat the various symptoms. And yet with all those medications, I was still suffering with extreme fatigue, respiratory difficulties, swollen and painful joints, headaches, blurred vision, and sores in my mouth and throat.
You listened very carefully to my symptoms and then named the symptoms and then named the symptoms of GWI/CFIDS. Because I was scheduled to see my doctor the next day you advised me to have him start me on doxycycline 200mg per day. After as few as three days on the doxycycline therapy, I noticed a marked improvement in my health. And after a week on the therapy, almost all of the symptoms had disappeared.
The following is a history of events, symptoms, and various treatments, which preceded our initial contact:
In October 1990, my husbandís unit from Hensley Field, Grand Prairie, Texas, 130 TAW Air National Guard was deployed to Al Ayn, United Arab Emirates. Al Ayn, in non-war times was an international vacation resort and they had no military and action at their base, however, their C130ís were constantly flying in and out of war zones delivering supplies.
In April 1991 the unit returned to Navy Dallas and the men returned to civilian life. There were no military casualties and everyone appeared to be in good health. In may of 1992 I had my first case of what appeared to be the flu, but was different from any other flu I had ever had in that there was an unusual amount of fluid in my lungs and a lingering sense of a slight strangling sensation that kept me constantly clearing my throat. My husband, who also had the flu, complained of being tired all the time and we both noticed a decline in our energy level
Over the next three years I spent an increasing amount of time in doctorís and dentistís offices for flu, ear infections, urinary tract infections, stomach problems, gynecological problems, dizziness, sleep problems, joint pains, ocular migraines, and dental abscesses. At one point I had pains in the arches of both my feet so bad that I had to wear arch supports in order to walk.
During those same three years my husband began to complain constantly of being tired. He would have intense gastrointestinal pains and diarrhea. He also began to have severe pains in his joints. We both slept more than usual and were easily fatigued. Doctors told me I was probably pre-menopausal and my husband began to wonder if he was suffering from some kind of delayed depression.
Then on December 29th, 1995 I came down with the flu again, and this time my doctor put me on penicillin. My condition progressively worsened and on February 9th I was rushed to the emergency room in acute respiratory distress. I was given breathing treatments, cortisone shots, oral steroids, and prescription for Biaxin and ventolin to use daily for asthma. For two days I was in extreme physical pain and began to fear I wouldnít live much longer. By this time the pharmacist (a friend of ours) was alarmed and advised me to stop taking the Biaxin until I could talk to my doctor. My body began to swell, I developed sores in my throat, blisters I my tongue, and my lips would burn so bad that each morning I would wake up to find white dead skin on my lips that would come off when touched. My vision began to blur and I had severe headaches.
It was at this point in time that I saw a news special about female Desert Storm Veterans who were being treated for asthma (as I was) and this triggered my memory of Al Adask interviewing you and your wife on the topic of Gulf War Illness. I called Al on Monday and by Thursday you and I were communicating.
I never did tell you that when you sent that first 14-page fax to me it was the first seen by my department head and she copied and read the entire fax before notifying me it was there. She also called me into the conference room with two witnesses and told me I was being released from work to go home (with pay for the time being) until I could bring a doctorís confirmation that I was not contagious.
I went home and read every work of your fax and was amazed to see all of my symptoms in print. I tried to share it with my husband, but he bordered on denial, saying I couldnít have had this illness because he didnít.
The next day I saw my doctor who refused to read the fax, but reluctantly agreed to write a prescription for doxycycline. Then later that day I talked a friend of mine in the lab at the Veterans Hospital in an attempt to gain information, and she told me "she couldnít say anything without putting her neck on the line and jeopardizing her job".
Those two days were the kind of "tough times" that "build character"! All I had to hold on to was your, fax, a prescription of doxycycline, and belief that God had led me to you in an answer to my prayers.
Three days later I became living proof that your therapy worked. The blisters went away in my mouth and throat, my vision began to clear and I was able to breathe without problems. When my husband saw my recovery, he finally went to the base and asked a Colonel if anyone else on the base had been sick since returning from Desert Storm and the Colonel said that he had been sick and his wife had been very sick. Three weeks after my husband approached the Colonel; he came to my husbandís unit at drill and asked my husband to get me on the phone so he could talk to me about the symptoms, which we did at length. The next day I sent him a complete copy of all the information you had given me.
Iíve had to educate myself on this illness so I can educate others. I appreciate so much of all the articles you have so generously shared with me, and in return I have shared them with people who are genuinely interested in the illness. For example, my eye doctor, (also a distant cousin) has served at one time the president of the Texas Medical Association (Dr. Robert T.) and he was very interested in your fax and he expressed his gratitude for giving him a copy.
It was at this point in time that I received your letter informing me that Dr. Rea was your contact in Dallas and Iíve had to put on temporary hold my efforts to inform as many people as possible about this illness while I am going through testing at the Environmental Health Center.
When I saw Dr. Rea I had been back on the doxycycline for two weeks and although the symptoms were not as severe, they were not going away immediately the first time. Dr. Rea told me that he called you while I was in his office and the two of you decided to try the Desert Storm vaccine. He took me off the doxycycline for two weeks, during which time I have been testing for sensitivities to foods, chemicals and inhalants. This week they will draw two vials of bloodÖone to make the vaccine, and one to study my lymphocytes to see how they are functioning.
Since Dr. Rea didnít have printed handouts to explain the Desert Storm vaccine, I bombarded him with a lot of Ďhowí and Ďwhyí questions yesterday when I saw him. He did a great job of answering my questions and addressing my concerns, and even suggested that I talk some more with Dr. Griffith. He started me back on the doxycycline, has given me antigen therapy, and will work some more on my immune system and the vaccine.
The last question I asked Dr. Rea was when I would have the opportunity to meet you and thank you in person for all that you have done for me. He grinned and told me you would be at the center next Wednesday to speak to a group of doctors and told me if there were enough chairs, I could even stay and listen!
Thanks again for everything. And if you get more calls from people in this area who are veterans or spouses, please feel free to give them my number and I will be happy to share all the information I have with them.
Dear Prof. Nicolson,
Today I went for a check-up to my neurospecialist.† I have MS, and I am following your treatments since November of last year as well as the dietary suggestions, with the full support of my GP.† Until today my neurospecialist did not know that I was following your suggestions, but he was highly surprised about my recovery, which is truly amazing.
I do not have any MS symptoms any more (just occasionally when I feel stressed), except that I am still walking with a slight limp, but not always.† I explained to my neurospecialist everything that I have been taking (especially the antibiotics as recommended by your publications), and he will without a shadow of a doubt contact you.† I gave him the address of the web page <http://www.immed.org/>† so he can start his investigations from there.
Thank you again for your time and help,
Tannie B. van H.
Dear Dr. Nicolson,
††††† †††††I read the article about your daughter's illness after the Gulf War.† Her symptoms looked so much like those of myself and my 5 children.† For 15 yrs I'd searched for answers.† We'd all been diagnosed with FMS and CFIDS, etc.† Your lab gave me the name of Dr. W. L. who uses your labs.† I was found to be mycoplasma positive (M. fermentans- and Lyme-positive)† I must have had Lyme since age 10.† I am now 47.† So far, 4 of my 5 children have tested positive for Lyme microbes as well.† It has been a long, frustrating, sometimes humiliating experience. Recovery has been painful and expensive and encouraging, thanks to you and your family and your lab.†
††††† I just needed to say thank you personally for your work.† You have made a major contribution to our lives.† My husband will also be tested as I may have shared the wealth with him.† He thanks you too. We're broke, but getting healthier slowly.† Maybe someday I'll make it back to the work force and my 26 yr old daughter will be able to experience her life out of bed!† I would love to tell you the whole story but its too long, and I have to run to the doctor's.† Thank you again for your contribution to our health and our lives.† We love you for it!!!† God bless you.
Grace Anne K.
West Hartford, CT
Dear Dr. Nicolson,
I found out after I was tested for Mycoplasma fermentans that I was positive on Nov. 15, 2001.† I started on Doxycycline on Dec. 15, until Duke University took me off on May 1, 2002.† I feel well from CFIDS, with lots of residual damage from the 3 strokes (co-factored by  a genetic predisposition to a deficiency in anti-thrombin III,  the estrace and aygestin I had been taking since about 1990,  Mycoplasma fermentans that I appear to have had since the late 1980's which showed up as a mystery infection in my white blood cells or WBC.)† No doctor could tell me what kind of infection I had but after my Doxy the WBC counts gradually became normal starting in January of this year.† I know this because I charted all of my old medical records and the WBC was one of my graphs.† Duke University also took me off the HRT in May and now my coagulation is normal and no more miserable PMS!!!
My neuropsychiatric exam at Duke shows Much improvement from the CFIDS symptoms since the 1997 Neuropsych exam and more residual damage from my third stroke, with regards to my attention and motor and verbal processing speeds.†
I am still very deconditioned and live in the boonies so I will have to work on weight lifting and exercise myself this fall.† The Head of the Psychiatry Department at Duke thinks that in time, if I take one thing at a time and don't let my attention get diverted, and if I am not pushed for speed or to be the Type A person that I once was that my old skills may slowly come back. This will be just good enough to enjoy retirement but not good enough to become employed again, unless I figure out something on my own.
One thing at a time.† It just feels so good not to have brain fog any more or be hurting at night and in my bones.† I am just worried that it might come back out of the recesses of the deteriorated bones in my upper right jaw near my sinuses or elsewhere.† Meanwhile, I have to find some someone who knows how to treat me, as my Infectious Disease Doc at Duke said they didn't have anyone there who knew how to treat me.† Even though I know that there is a trial program underway for members of the VA with regard to Mycoplasma fermentans, I just am not a veteran and can't take part in it.
Thank you so much Dr. Nicolson.
It has been some time since we spoke. I am one of the Gulf Veterans that you had done a test for the Mycoplasma early on, and I tested positive for the Mycoplasma fermentans.
I have had a number of diagnosis. Gullion Barre' Syndrome, Multiple Sclerosis, Possible ALS/MND, a bulbular stroke. loss of teeth due to rampant carries, chronic uveitis with loss of vision in one eye, and bilateral Retinal Branch Vein occlusions.
I had remained on the Doxycycline 100 mg twice a day for just about a year, It relieved the "MS" Symptoms.† When that had stopped working, I had contacted you, and you suggested† alternating rounds of Cipro 750mg twice a day and Biaxin 500mg twice a day. I have followed this, and it has worked well, each time I have been able to go longer between rounds of antibiotics.
I am contacting you now, because I had learned that you were going to do a new study on Gulf War vets. I was apart of the ALS study, and while talking with one of the research assistants, I learned that there were a great number of vets with MS that had contacted the
For the study. One assistant, had stated that there were more than 300 of us.
We have started a Group at:† http://groups.yahoo.com/group/MSVETS/
to help bring those vets together, so that a study might be done.† Each of us in the group are told again and again of the numbers of Gulf Vets that have been diagnosed with MS.
Dear Drs. Nicolsons,
I want to THANK YOU, for all the time and research you two have put into finding a cure for this horrid disease.† I am a 52 year-old white male that was diagnosed with C.F.S. in the late 80's, and it hit me full force in 1998. I steadily went downhill from then on.† I thought it was my heart causing all my problems, because I knew very, very little about C.F.S.† Researching on the internet, I ran across information that kept referring to your research.† I clicked on one and started reading what you had to say. BINGO... You knew more about what was going on with me than any of the doctors I had seen, and you hadn't ever seen or examined me. The more I researched your work, the more it made sense.
** I researched about 35 to 40 hours a week for about 2 weeks.**† I also researched your footnotes.† I researched everything I could find on the internet, printing everything out, because I had real bad "brain fog", and I had my son read the research to see if it made sense to him.† It did!†† I started calling doctors asking them to prescribe Doxycycline, but none of them would.† They said it would not hurt me, but it might not help me.† After about a week of dancing with the doctors, I went to Mexico and bought Doxycycline.†† When I got back into the United States, (in about 45 minutes) I took my first dose of Doxycycline. This was May 18, 2002. Today is August 22, 2002 and I am at least, again I say, at least, 85% back to what I was before my illness, and I am still improving daily.† I think my body is getting used to doing stuff again.† I haven't worked or made any money since 1998, and I was really thinking my life was over, meaning I was going to be " sick and in pain " the rest of my life.† I now expect to recover completely, I mean I expect to be 100% well within the next year.† I have heard and read about a healer that is better than you, but he was nailed to a cross 2000 years ago.† What you are doing is the most basic of human reactions; you are seeing pain and affliction and are doing your best to stop it.† We are our brotherís keeper, and you are proving it, and you are living it.† Without your research I shutter to think what my life would be right now.† I want to Thank You. There are so many people that you are helping that you will not hear from, that may not even know that you and your wife are responsible.† For those people also I Thank You.† GOD Bless both of you.
My journey began on March 13th 2000. That day I woke up and barely had the energy to make it downstairs for breakfast. I had been doing quite a bit of physical fitness for the years preceding, hence the lack of energy was unusual.† Actually I had done a 7-mile mountain run the day before.† The weeks prior to this I had had more than the usual muscle pain in my back and neck and even in my jaw.† Actually it was so bad in my jaw that my ligaments became sprained.† I attributed all this "reactive arthritis" to some car accidents I had had ten years earlier.
For almost 2 years I continued to have chronic fatigue and intense muscular pain along with very low body temperatures.† Finally I found a doctor who had my blood tested as you suggested for Chlamydia pneumoniae.† I tested positive.† The doctor has been treating me with an antibiotic program.† My life has turned around.† My energy has returned, and my muscle pain is almost gone.† I feel it is a miracle to have found a doctor who understands the cure for CFS.† I also take a thyroid supplement called liothyronine to support the thyroid, and I am slowly being weaned off of this medication.† In addition, I take some nutritional and herbal supplements for all around health. I plan on training for a triathlon some day and to totally leave this illness behind. I'd like to be a poster child for the cure for CFS!!!!!!!!!!!!!!!!!!!!!!!!!!!
†Thank you for all the help from your fine Institute.
Albuquerque, New Mexico