BTW, there are 3 labs that use the Q-RiBB test which uses DNA sequencing (strings of DNA for the diff types) and blood smear. Research Bowen Q RIBB test and Lymes. IGENEX labs is used by the ILADS doctors (International Lymes and Associated Disease Society) These are doctors that believe from research that these are chronic bacterial infections.
I want you all to think about this very seriously. Why have the drug researchers stopped looking for cures and only concentrate on pain meds. A cure drug is one time deal, a chronic illness means you have to take 8 pills a day for the rest of your life. What is more proffitable for them? I had a friend from college that was a Pharma rep. She retired at 38.
before accepting your fate, do some research. I did, and I am getting better. It might take 6-12 months, but it's better than living the next 40 years in pain and progressively get worse.
Why would you get flamed? For stating your research,your interpts of that search? Absolutely not.
Many of us are researchers by profession, many of us are medics by profession, many of us are loaded with credentials and experience. We're all adults here.
Can viral or bacteria infection be the foundation of an autoimmune disorder? ABSOLUTELY. Can it make you vunerable to MS in particular, absolutely. Does it happen as a general rule for everyone, no.
I'm super sorry you were pigeonholed. No one deserves that. I'm sorry you are suffering, though very glad you are learning all you can. Hope that involves some valid sources.
I know that my DMD is working on my disease and I'm grateful. I also know that I take meds for some other chronics in my life and I'm grateful. MS in incurable at this point, but it won't be forever. I believe there will be more combo of solutions for us.
In my case and many others here - at this point, doesn't really matter if our past life made us vulnerable, just have to deal with the here and now and go from here. It's the only way we can get through the next day, or hour, or week. Know what I mean? Those living with chronic ailment will surely know what I'm saying - the other option is to say, give.
If you breeze through our forum you may not realize that most of us are fighters - and only have moments of weakness and that's when we rely on each other to pull us through. Hope you look a little further, and uncover that - it should be inspiring.
This isn't a flaming type of forum here - as shell pointed out we are a civilized group that is open to new ideas when they can be backed with real science.
I won't pretend to understand all the science behind what you are purporting here. I can tell you I was raised in a large family, all in the same environment and I am the only one with MS. I did not serve in the Gulf War, my spouse was never in the service, and my tests for MS are positive and my Lyme tests are negative. I do live about 10 miles from a very large AF installation if that counts. Yes, my neuro ran all the tests - my blood was shipped out all over the country to various labs.
I am very sorry you were misdiagnosed, if that was the case. We do hear once in a while that people have a dx rescinded because of new clinical evidence.
Symptom management with MS is not enough - the neurologist should have placed you on a disease modifying therapy if the dx was conclusive. You are not specific on how the dx was reversed - did it happen through the neurologist or did you decide this on your own ?
I have no doubt that Lyme Disease is very real and wrecks many a life here in the US and abroad. Recognition of it is still growing, and I am hopeful everyone gets the appropriate treatment.
Whatever disease you have, may you also be successful in the struggle to feel better.
I overlooked asking if you have visited the Lyme forum here at MH? I am sure they would be happy to discuss this with you on a different level.
if the labs your doc used did not use the Q-Ribb method, your results could well be incorrect. Does your husband have any symptoms? aches pains, headaches, etc. The sources that I have are as about as reliable as you can get. My source has over 3 world renowned citation papers written, 400 peer reviewed and accepted papers and is on several boards and faculty. He discovered the military weaponised Mycoplasma and it is one of the reasons we are experiencing a HUGE growth of AI diseases. Unprecedented. If you look at these chronic bacterial infections, they have many vectors of transmission. This normal bacteria that is commonly found has been found in a modified form in a huge group of tested populace via of a single added genetic sequence that does not occur naturally. Gulf War soldiers and AI sufferers have this bacteria. Mycoplasma Fermentans Incognitus. It's the common link in ALS, GWI, MS, Systemic Lupus, Lymes.
The reason I ask about your area around the base is that the AF uses aerosol spray technology in some of their planes. There were 2 "misshaps" in Arkansa where 100.000 fish died in the Ark river. Also over 5000 birds mysteriously dropped from the sky a week later. Those are Facts.
Lulu, also tell me if the area around the base has experienced an "abnormal" amount of AI diseases. Maybe your friends are experiencing them and have confided.
This Autoimmune disease explosion is not normal. Here in my town it is getting worse and Lymes is up 37% as reported by the state.
One other thing. In my research, I saw a editorial in my paper of a woman who met a Military policeman (never overseas) who had just had a Giloblastoma removed. Brain cancer. They dated with his best friend (also an MP, never overseas, in fact they went through training together) and his girlfriend. Both couples got married. Had children. Both soldiers died from innoperable giloblastomas that returned. BOTH OF THEM.
Odds are infintesmal of that happening. Now, both women are ill with GWI like illness and have been diaged w/ MS. Both had total hysterectomies. Both families children suffer cognative issues. Odds of THAT happening are astronomical x 10. Only linking item was both soldiers were innoculated together with experimental smallpox and Anthrax vaccines w/ Squaline as an adjuvent.
Could the vaccines have infectious bacteria in them? I see those odds and see an intracellular chronic bacterial infection.
Something dosen't add up. Something is very wrong.
Another thing, the MS society quotes a NIH study done 11 yrs ago to say that Lymes and MS are not synonymous. 11 yrs. There has been much research from the Human Genome project since then and all is said is that it MIGHT be bacterial? I am just offering a divergent opinion that fellow suffers might want to consider since all my doctors were wrong until this scientist told me "No normal Dr, Specialist, or Infectious Disease dr will be able to figure this out and you will get passed around because of a bacterial/fungal infection that they have never seen before." He was right. it took me 14 months to figure that out, 14 precious months.
Have you visited the Lyme forum? Though many of us have been tested, we still have many in limbo and lyme being a mimic of MS and other disorders is no secret. We talk about the importance of testing a lot. I remember the time when the kids were in wards at the hospital with Lyme - looked like cancer wards. This was before the great strides and success in treatment.
I assure you - anyone facing MS on our forum knows about Lyme and we do not discredit the disease nor the havoc.
where was your lyme test done? through who? IGENEX, Great Smokie Labs? if done anywhere else, it could be wrong. And that is definative. You get tested for Mycoplasma Fermentans Incognitus?
Can you pinpoint a date when your life was changed forever by this illness?
RA has been proven to be a bacterial Myco infection. IBS/Chrone's (a symptom of MS/Lymes) is by Heliobacter Pylori bacteria. Yes , I have visited the Lyme forum, and the autoimmune, and several others. A number of people have contacted me about this.
You state you all know about Lyme. Great. Then you should know how unreliable the Labcorp/Quest tests are. They are about as poor as Clev Clinic and Mayo. They use the same diagnostic criteria that the CDC and ISDA says to use.So consequently they miss 90% of the actual POS results.
No, I absolutely did not state I know ALL about Lyme, lol
Please don't scold me, I'm an adult.
All known mimics at the time of my diagnosis were ruled out. Thanks for your thoughts.
I have MS and I'm treating it. I respect those who choose not to.
Please, don't try to disgrace my diagnosis or my decisions through your pointed questioning. I'm here for other reasons.
Shell, did you know Tysabri and other human antagonistic monoclonal antibody drugs were developed by companies under the direction of the Department of Defense. Now WHY would the DoD want to have a drug made? They are stockpiling these drugs and Inhalation Anthrax drugs under something called Project Biosheild 1.
Soldiers are being used as test bed subjects for these medications without their consent. I met a woman who was AI ill as was her Husband (a soldier). She had all the classic symptoms, even a hysterectomy. She was diaged previously with Systemic Lupus, but "Now dosent have it" huh? An Army doctor gave her Benylysta, (belumamubab) which was a drug that was developed under contract for the DoD and did not have FDA approval. I think that is odd. If you look at the manufacturers web site, it lists "extensive human trials". Are you allowed to have human trials before FDA approval?
Shell, I am NO scolding you. There are some that get their diag with out any concrete proof of their illness, with varrying titres and accept their fate. Meanwhile, the brain plaques increase, the spinal/muskuloskeletal issues get worse, cancers and other worsening symptoms emerge. If I knew that a teset I took was seriously flawed (as is the Labcorp/Quest/Mayo/Cleveland criteria), I would look in a different avenue. For antibiotics=getting better. Pain modulating drugs for rest of life=get worse. Tysarbi=rest of your life. DNA disrupting antibiotics=6 months to a year. I have 40 years left on me. I'll take the accurate test and get better.
I'm not disgracing your opinion, I just handed you a winning lottery ticket. All you have to do is see if the numbers match up and WIN.
Right...conspiracy theory. maybe the jokes on you.
Life" (11/95) featured a special report entitled: "The Tiny Victims of Desert Storm", which described in heart-rending detail (with numerous photos) how the children of our veterans are being born with horrendous disfiguring birth defects. The article was subtitled, "When our soldiers risked their lives in the Gulf, they never imagined that their children might suffer the consequences - - or that their country would turn its back on them."
In the months and years following Desert Storm, thousands of babies have been born to vets with horrible deformities (missing limbs, one eye, missing ears, incomplete or missing organs - reminiscent of the Thalidomide babies of the 1950s - but in far greater numbers. [ED. NOTE: Thalidomide was another experimental drug (administered to pregnant mothers) which went awry].
Meanwhile, the Department of Defense is working overtime to cover up the crisis with Gulf War babies, denying it exists, denying benefits or medical assistance to veterans with birth defected children, and even going so far as to censor the "Life" article cited above off of the Internet.
Dr. Douglass, a close friend of this writer, wrote in his January 1994 newsletter regarding Gulf War Illness: "The symptoms are now having serious repercussions. Half or more of the babies born to Gulf War vets since the war have had some sort of birth defect or blood disorder".
"Nation Magazine" (1/95) estimates that 67% of babies being born to Gulf War vets who are ill are having serious birth problems. Over half of the babies now being born in Iraq today have deformities or major birth defects, according to reports Dr. Garth and Nancy Nicolson have received.
According to the "Life Magazine" article: In 1975, a landmark Swedish study concluded that low-level exposure to nerve and mustard gases could cause both chronic illness and birth defects. The Pentagon denies the presence of such chemicals during the Gulf War. [ED. NOTE: Even though over 18,000 chemical alarms sounded during the Gulf War]' but the Czech and British governments say their troops detected both kinds of gas during the war. A 1994 report by the General Accounting Office says that: American soldiers were exposed to 21 potential reproductive toxicants, any of which might have harmed them or their future children.
A number of examples of babies born to Gulf War vets with devastating birth defects were cited in the "Life Magazine" article:
1) Kennedi Clark (Age 4) - Born to Darrell (an Army paratrooper in the Gulf War) and Shona Clark. Kennedi's face is grotesquely swollen sprinkled with red, knotted lumps. She was born without a thyroid. If not for daily hormone treatments, she would die. What disfigures her features, however, is another congenital condition: hemangiomas, benign tumors made of tangled red blood vessels. Since she was a few weeks old, they have been popping up all over - on her eyelids, lips, etc.
(2) Lea Arnold (Age 4) - Born to Richard and Lisa Arnold. Richard was a civilian helicopter mechanic (working for Lockheed) with the Army's 1st Cavalry Division during the Gulf War. Lea was born with spina bifida, a split in the backbone that causes paralysis and hydrocephalus (i.e. water on the brain). She needed surgery to remove three vertebrae. Today, she cannot move her legs or roll over. A shunt drains the fluid from her skull. Her upper body is so weak that she cannot push herself in a wheelchair on carpeting. To strengthen her bones, she spends hours in a contraption that holds her upright. Just about our whole world is centered around Lea, says Lisa Arnold. Huge medical bills and the unwillingness of insurance companies to cover pre-existing conditions force the family to live in poverty in order to qualify for Medicaid.
(3) Casey Minns (Age 3) - Born to Army Sgt. Brad and Marilyn Minns. Casey was born with Goldenhar Syndrome, characterized by a lopsided head and spine. His left ear is missing, his digestive tract (i.e. esophagus) was disconnected. Trying to repair his damaged organs, surgeons at Walter Reed Army Medical Center damaged his vocal chords and colon, says Brad and Marilyn. His parents feed and remove his wastes through holes in his belly. His mother Marilyn, says, "Sometimes it just overwhelms me, but I try to take it one day at a time.. it's made worse by people who say that Gulf War Syndrome doesn't exist...they're turning their backs on us."
(4) Michael Ayers (Died at 5 Months of Age) - Born to Glenn (a battery commander in the Gulf War) and Melanie Ayers. Michael was born with a mitral-valve defect in his heart. He sweat constantly - until the night he woke up screaming, his arms and legs ice-cold. he died that night of congestive heart failure. As "Life Magazine" wrote: After Michael's death, Melanie sealed off his bedroom; she tried to close herself off as well. But soon she began to encounter 'a shocking number' of other parents whose post-Gulf War children had been born with abnormalities. All of them were desperate to know what had gone wrong and whether they would ever again be able to bear healthy babies. With Kim Sullivan, an artillery captain's wife whose infant son, Matthew, had died of a rare liver cancer, Melanie founded an informal network of fellow sufferers. Kim is here. So is Connie Hanson, wife of an Army sergeant - her son, Jayce, was born with multiple deformities. Army Sgt. John Mabus has brought along his babies - Zachary and Andrew - who suffer from an incomplete fusion of the skull. The people in this room have turned to one another because they can no longer rely upon the military."
(5) Cedrick Miller (Age 4) - Born to Steve (a former Army medic in the Gulf War) and Bianca Miller. Cedrick was born with his trachea and esophagus fused; despite surgery, his inability to hold down solid food has kept his weight to 20 pounds. His internal problems include hydrocephalus and a heart in the wrong place. Cedrick suffers, like Casey Minns, from Goldenhars Syndrome. The left half of his face is shrunken, with a missing ear and blind eye.
(6) Jayce Hanson (Age 4) - Born to Paul (a Gulf War vet) and Connie Hanson. Jayce was born with hands and feet attached to twisted stumps. He also had a hole in his heart, a hemophilia-like blood condition, and underdeveloped ear canals ..a cherubic, rambunctious blond, he's the unofficial poster boy of the Gulf War babies - seen by millions in "People Magazine". But since his last major public appearance, he has undergone a change. His lower legs are missing. Doctors recently amputated his legs at the knees to make it easier to fit him with prosthetics. He'll say once in a while, "My feet are gone", says his mother Connie, but he has been a real trooper.
The government (especially the Defense Department) denies that the problem exists and no government medical or financial assistance is forthcoming unless a parent is still in the military (and over 2/3 of the Gulf War vets have been separated from duty since Operation Desert Storm).
As "Life" wrote: For parents of these children, the going is grim. They are denied insurance coverage for pre-existing conditions. They are being driven into poverty. Some join the welfare line so Medicaid will help with the impossible burden. You could be a millionaire, and there is no way you could take care of one of these children, says Lisa Arnold.
Right the DoD is GREAT! Glad you support them , I'LL support the TROOPS.