Gulf War Illness and FM

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by cicero, May 14, 2003.

  1. cicero

    cicero New Member

    After getting checked for melanoma skin cancer at age 31, the wonderful VA suggested I get screened for Gulf War Syndrome. After a car accident in which I was rear-ended at a complete stop by a driver doing 45mph, the doctor determined I had FM in 1997. I am a guy and my family thought the doctor was nuts, along with me. The next four years consisted of useless anti-depressants because the 'pain was in my head'. I've been fired from my job for missing too much work as of yesterday. I'll probably be homeless in a month or sooner when the little money I earned runs out. I intend to hunger strike if the VA continues to ignore me because other than suicide (unthinkable) I do not know what else I can do at this point, and I am tired of being told I am nuts, and the headaches, backaches, leg pain, foot pain, shoulder pain, irritable bowel, and lack of energy keep me inside despite living in a beautiful state known as Colorado. If you met me you'd want to date me, which means doctors refuse to listen to my complaints and help. I get sent to shrinks. Any other veterans from the 1991 war experiencing this? I've ran into one gulf vet since I exited service in 1993. Where did they go? Is there any out there whom can relate and offer some insight on what to expect from the VA? Thanks to anyone with insight.
  2. Mikie

    Mikie Moderator

    I am from Colorado and you are right; it is beautiful. I want to welcome you to our board. There is a lot of wisdom and info available here.

    Are you familiar with Dr. Garth Nicolson's research on GWI? He has found that a very high percent of those with GWI, FMS, CFIDS, and a lot of other immune/autoimmune illnesses are infected with one or more strains of mycoplasmas. There is a lot of info here and at this site's library on mycoplasma infections. Both this message board and our library have search features, so you can bring up posts/articles on mycoplasmas. You can also do a web search and find a ton of info.

    The treatment is long-term use of antibiotics such as Doxycycline, Cipro, or azithromycin. I believer there is another newer one too. Antibiotics in the penacilin family do not work against mycoplasmas.

    The only accurate test for these bacteria is a PCR DNA test, but some docs are willing to try the antibiotics on an empirical basis; mine did. I had a Herxheimer Effect which made me sick when the antibiotics killed a bunch of the bacteria, but then a lot of my symptoms went away. I've been on the antibiotics more than a year.

    I got the infection in Dec. of 1990 when the soldiers were getting their vaccinations to go to the Gulf when the war started in Jan. of 1991. I lived next door to Buckley Air Field in Aurora just east of Denver. I probably got it from contact with a sick soldier out in the Christmas shopping crowds. I believe the vaccines were contaminated with the mycoplasmas. I got what I thought was the flu but it crippled me for months, long after the flu-like symptoms disappeared. My health went downhill from then on despite partial recovery off and on.

    You have been sick a long time and it would take a long time on the antibiotics to help you if you are infected, but it is effective treatment and a reason to hope. If you cannot get the VA to do anything, do whatever you can to get the money needed to get treatment.

    Go to the website call The Road Back Foundation; it's a good website. Dr. Nicolson's website tells you how to go about getting the DNA blood tests. They are expensive, the blood must be very carefully handled, and there is a high possibility for false negative results. If you can find a doc willing to try the antibiotic treatment, it would be a lot cheaper for you, but it would not document your case if that is important to you. Good luck and let us know how you are doing.

    Love, Mikie
  3. mamafurr

    mamafurr New Member

    cicero,
    i am new to this board. but read your msg due to your gulf war involvement. i honor you for your duty to our country. now if they would honor you the same way! fight the va like you fought in the gulf. be persistant! you are not nuts. does you family treat you differently now. i mean now? i mean better yet? hope so. they need a swift kick in the you know where. people think if you look good, you feel good. ignorants. i have a friend that is an ex-vet and goes to the va in the bay area, ca but don't know if he's has any problems. you have to keep bugging the docs to try different things til you can find something that finally works. don't let this discourage you, but i was diagnosed in 1990 and still working on med changes do to the progression of my situation. hang in. write often.
    take care.
  4. cicero

    cicero New Member

    Thanks. I just finished reading up on the bacteria suspected of contaminating the vaccines causing this problem. I was on an aircraft carrier so this seems to be the most logical explanation other than possibly the oil fires and God-knows what else.
  5. Mikie

    Mikie Moderator

    So many got sick before the war even started that I have to think that the vaccines are the most probable trigger in many of our illnesses.

    Love, Mikie
  6. cicero

    cicero New Member

    I am relieved to read the responses to my post. Thank you all for taking a moment to respond with your obvious good-intentions and encouragement. Violence is never an answer, but taking money is. Has anyone noticed how our president, since he accepted an anthrax vaccination, seems to be behaving as if he is in pain or something? Maybe I am reading too much into that, but I don't think he feels as good as he did prior to that vaccination. Just an impression.

    You can all bet that as I learn new things regarding this, I will share that information. I finally received a primary care physician and the appointment is at the end of May at the Denver VA. After my initial post I decided I will not give up and 'abuse my car'. So I went to the VA ER because they said that is the way I can get help until I see the doctor later this month. Here is how that went:

    The doctor was young and seemed fresh out of medical school. He was kind and considerate and listened to me. He never once said I was crazy and making up the FM or the pain complaints I stated. He never once accused me of seeking pain drugs to get 'high', as the private Milwaukee doctors did (except one, Angelina Ausban- internal medicine). He explained to me that he couldn't simply give me OxyContin. But that was OK because I didn't expect him to. I simply told him of all the meds I have been given through the years, that was the one drug that made life bearable, freeing my mind to focus on other things than constantly meditating to 'ignore the pain'. He spent over an hour with me in the ER of all places listening to me. He claimed he had never heard of 'bacteria contamination in the vaccines' and said the VA has no idea what causes GWI. I don't accept that, but again, he was a young doctor and I accepted what he told me as the truth as far as he was concerned. My blood pressure was the highest it had ever been, at 156/80 (mine has always been 120/80). He also told me he did not see me as a drug-addict looking for pain meds. He recognized I was truly in a great deal of pain and distress. I refused his offer for NSAID's because they tear up my gut and make me vomit. I told him I have used 800mg Ibuprofen with no relief, along with aspirin and tylenol. He prescribed for me Flexeril and Restoril (he said the VA cannot afford the Ambien I requested for sleep). I was treated with respect and dignity, and my faith has become renewed regarding the VA staff in Denver. Again, Denver. the Milwaukee VA, forget about it. The owner and VP of my company did not fire me, thank God. They know I am intelligent, hard working, fair and decent. I have been praying non-stop since this new revelation occurred to me. I want my good-name restored. I want justice for all whom served like me and became ill. I will hunger-strike for a good cause as did Mandela and Ghandi if necessary. I am a man of integrity, and I believe Americans need to know the sacrifices we Vets have made to better the world we live in. Every one of us joined ultimately because we all believe in freedom and hate tyranny. United we stand, divided we fall. What I am doing I am doing for my daughter and her future. I intend to start making phone calls to various attorneys throughout the country. If I had the opportunity and the money and the time I would be an attorney. But until I can complete college and law school, I will instead focus my energies on a cause which this is and find the right person to initiate a class-action lawsuit so that all of us vets get heard in a court-of-law to force our country to find a cure, not a new 'drug'. I don't want drugs, and I have already told the VA I refuse to buy marijuana anymore to self-medicate. I want to be able to work and do positive things to better this crummy world. I will find and join a VFW. That is a good idea. If we unite and demand true answers with a billion dollar lawsuit, I believe we will get answers and find a cure. We put our minds together in the 40's and created a bomb to end WWII. I believe we can put our minds together and find a cure for what ails us as well. If we all succumb to misery and hopelessness then we may all very well die without an answer or a cure. This is why America is great, but it requires unity for an agreed cause. I don't wish to emigrate to Canada or Australia, though I think of that daily. WE NEED A CURE, NOT DRUGS.

    Again, thanks for taking a moment to read what I have written. I don't want money out of this. I want to be free of pain so I can work and take care of my daughter and make it possible for her to have a better life than what I have. That is where I stand on this, and you'll have to kill me to stop me. I have already been homeless and impoverished and imprisoned, so other than death, there is nothing anyone can do or take from me that hasn't already been done. My role-model is Jesus. He died for a just cause, and he was a man. That is the root of my strength, to be like him. I could care less about a Porsche or a mansion. That's material and means little to me. Justice matters, and we deserve it. That's the bottom line. So please, pray for me. I need it. Thank you all for reading this.
  7. MadVet

    MadVet New Member

    I have some similar complaints regarding the VA and their quickness to attribute every complaint to mental illness. They almost killed me on more than one occasion and since reporting to them for help in 2006, my life has been ruined. I once earned $100k+ per year and I now live/barely exist on less than $1k per month. I've looked into suing them but it would be too much mor me to do alone. What can we do to move forward?
  8. Ronaldo60

    Ronaldo60 Member

    Hi there, if we can focus on your medical issues--<BR>
    The one common denominator to many of your symptoms, causes, FM, Gulf War Syndrome, and CFS is "stress hormones," and to put it simply it's likely your HPA-Axis (hormonal pathway) got screwed-up and you need some extra cortisol (the "good" stress-hormone that is anti-inflammatory and also keeps up blood-sugar for energy). You can find lots of references to cortisol/Gulf War Syndrome, cortisol/FM, and cortisol/CFS if you Google it. <BR>
    I'm no doctor but am a former CFS patient with years of experience with synthetic forms of cortisol after I had a very dramatic accidental "cure" some 19 years ago. Even if you had lots of hormone-level tests, your cortisol might test in the normal range, but the famed endocrinologist William Jefferies would have recommend you try a two-week trial of 20mg. cortisol(hydrocortisone) daily. I suggest you take the equal dose in the form of 5mg. prednisone, and take it every morning. <BR>
    Thanks again for your service, and I really hope you try this and get well!<BR>
    Ron
  9. elliespad

    elliespad Member

    Ron, I take 5mg. Hydrocortisone 4 times per day. Is there an advantage to taking 5 mg. Prednisone?
  10. Ronaldo60

    Ronaldo60 Member

    But I believe the prednisone is a little more potent as anti-inflammatory and may have less water-retention side-effects. I took prednisone always in the morning with a good big breakfast, and found my blood-sugar levels to be quite normal, instead of the terrible hypoglycemia I had before. Also, the morning dose is maybe more "natural" because that's when "normal" folks have the hightest cortisol-levels following deep sleep. By the way, the esteemed Dr. Jefferies always recommended taking HC as opposed to the stronger derivatives like Prednisone (and he actually lectured me on that point in a phone conversation). But I tried both meds and preferred the prednisone.<BR>
    Tell me how you came to be prescribed the HC and how has it been for you?