Topic : How I Fought My Illness

first of all, thanks for your concern.  i know that's what it is because i feel them swimming around in my throat, stomach, intestines, arms, legs, hands, feet, head, everywhere.  i also see tiny thin things in my urine.  i've tried too many herbs to even count.  none of them worked.  i've done a full body cleanse.  i've tried researching it online, all i can EVER find are advertizements for herbs and such just like the ones i've tried already.  there's so little research done on this, treatment options and facts about it are nowhere to be found.  i take generally good care of myself.  i'm extra clean and neat.  i went to vitamin world (and some other places like it) and asked what helps or cures intestinal parasites, they gave me something, it didn't work.  i did take some tests at the dr, but he said they were all normal.  blood and stool tests.  they took a urine sample and i could SEE the critters swimming around in it.  they said i was fine.  i don't understand how they thought that, i could see them with the naked eye.  i'm starting to think they just don't want to "deal with it" or something... i'm trying to keep the best outlook possible on this, but that's near impossible at this point...

Hello folks, I've been reading the posts about fibromyalgia on here and thought I should share some very important information regarding fibromyalgia and the need to look at Ehlers-Danlos Syndrome (EDS) as a possible diagnosis as well. EDS a genetic disorder that affects the collagen and thus the joints, bones, skin and other major organs; depending on the type - (there are currently 9 types of EDS that have been identified.)EDS is an inheritable disease, so it's important that folks who've been been diagnosed with FMS to at least look up the symptoms of EDS to make sure they and their children are getting proper care. It's very important to keep in mind that EDS is rare - it only affects around 50,000 Americans but most of these folks have no idea.  

  

Good luck folks! 

Hi I cannot relate to massive amounts of worms in your body, but I can relate to "A Worm".  When I was age9-11ish I had a very large Tape Worm that I pooped out(trying to say it nicely!:) )   That was the only time that I know of and my mom can't seem to think of why I got it or the details back then.  Anyway, at age 25 I was diagnosed with "Crohn's Disease"  it's a disease of the small Bowel.  To get to the point their is a Dr. Jordan Ruben" Holistic who actually has Crohn's  and has studied and ventured out to find what works for him and now sells the products called "Garden of Life" www.garderoflife.com   Their is one products that has helped me remove Bacteria and I truly do believe in this guy and if anything health food stores should carry his books and the first one where you'll see to pictures of him on the front I believe they usually give you that one for free with out purchase or at least they did here in Palm springs, ca  I am on a tight budget so I am not really able to buy his products as I used to but I do think this company is real and you can email them and they will talk with you via phone.  try not to go to one of there Internet people that sell garden of life products until you truly know all about them and they have answered your questions.  Dr Jordan Ruben's story if anything will at least give you the drive to continue searching for something and someone that sees and knows what you have!  Good luck  Take Care

Hi, I do not have the disease but my son has it.  It has taken a toll on me, trying to cope with him going to doctors and different treatment.  No it is not your fault that you have this disease.  He is going through the same thing you are going through.  With God all things are possible, and God will always be your support.  I will pray for you as others are praying for my son.  I ask God to keep me going to be here for him and hopefully he will be here for me.  I am not young and I also deal with health problems.  I was diagnosed years ago with Lupus, it went into remission but I still have to have blood work to keep it in check.  If you don't know Lupus is also an autoimmune disease, and I blame myself for my son having the illness.  Keep on fighting because GOD HAS IT IN HIS HANDS, remember that. 

HANDS UP TO YOU AND ALL OF THE OTHERS WHO ARE DEALING WITH THIS DISEASE.  MY SON WAS DIAGNOSED IN 1996 WITH SCARCOID, AND HE DIDN'T WANT TO BELIEVE THAT ANYTHING WAS WRONG WITH HIM.  SINCE WE MOVED TO GEORGIA HE HAS HAD CONSTANT MONITORING OF HIS HEALTH, ALL OF THE THINGS YOU ARE EXPERIENCING HE IS GOING THROUGH.  WITH GOD ON OUR SIDES WE WILL CONTINUE TO KEEP HOPE ALIVE FOR HIM AND YOU.  ME A MOTHER ASK MYSELF WHAT DID I DO TO CAUSE THIS CONDITION IN MY SON.  I WAS DIAGNOSED YEARS AGO WITH DISCOID LUPUS (LESS SEVERE THAN SYSTEMIC LUPUS, IT WENT INTO REMISSION BUT STILL THE BLOOD HAS TO BE CHECKED.  I HAVE HEALTH PROBLEMS ALSO, AND I ASK GOD TO KEEP ME AROUND FOR HIM.  WE BOTH NEED EACH OTHER.  KEEP PRAYING AND IF THERE ARE OTHERS THAT KNOW OF YOUR ILLNESS HOPEFULLY THEY ARE PRAYING ALSO.  I CANNOT MENTION EVERYONE IN MY PRAYERS BUT I DO ASK GOD TO PLACE HIS HANDS UPON ALL WHO ARE SUFFERING A DIBILITATING DISEASE. 

Potential Animal (Zoonotic) Virus Identified in Patients with Chronic Fatigue Syndrome, Multiple Sclerosis and Epilepsy

5/31/2006 12:00:00 PM


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To: National Desk

Contact: Gail Kansky of the National CFIDS Foundation, 781-449-3535 or gailronda@aol.com

NEEDHAM, Mass., May 31 /U.S. Newswire/ -- Recent independent scientific research funded by the National CFIDS Foundation, Inc. (NCF) of Needham, MA provided preliminary confirmation of a new virus identified in patients with Chronic Fatigue Syndrome. The Foundation's medical research dovetails with that completed to date by Cryptic Afflictions, LLC (1), a private company.

Dr. Steven J. Robbins, virologist and Chief Executive Officer of Cryptic Afflictions, LLC has discovered a major neuropathogen identified as an RNA virus designated as Cryptovirus. Substantial clinical and molecular evidence indicates that this virus is involved in the development of neurological disorders that include Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E.) by the World Health Organization, Multiple Sclerosis (M.S.) and Idiopathic Epilepsy of unknown cause.

According to the company, "This previously undetected virus appears to be of significant importance to researchers looking for a cure to Multiple Sclerosis and many other neurological illnesses. Antibodies to the newly discovered virus were found in the cerebrospinal fluid and blood of over 90 percent of the patients tested with Multiple Sclerosis. It is believed that this newly discovered virus may prove to be responsible for a host of neurological disorders. Tests are currently being prepared for tissue samples of lesions within the brains of patients with Multiple Sclerosis. This will be the final round of tests before approaching the FDA for approval of the diagnostic tests."

Dr. Robbins' evidence includes the presence of virus-specific antibodies in the serum and cerebrospinal fluid of patients suffering from these disorders, the ability of the virus to cause virtually identical disease in experimentally-infected animals, and nucleotide sequence data that indicates that the virus is pandemic and represents a single virus species much like measles.

A recently published medical journal article suggests that Cryptovirus is most similiar to Parainfluenza Virus-5, a rubulavirus in the paramyxovirus family. Another rubulavirus related to Cryptovirus and Parainfluenza Virus-5, that has gained national attention for its large outbreak, is the mumps virus. Rubulavirus infections have been associated with encephalitis, meningitis, orchitis, inflammation of the testicles or ovaries, spontaneous abortion, and deafness.

The NCF has conducted its own preliminary research into the potential role of Cryptovirus and Parainfluenza Virus-5 in Chronic Fatigue Syndrome. Professor Alan Cocchetto, Medical Director for the Foundation stated, "Our own funded research first confirmed the lack of a vital protein, known as Stat-1, in the blood of patients with Chronic Fatigue Syndrome. Stat-1 plays an indispensable role in immunity. Without this protein, patients are unable to effectively fight viral and bacterial infections. Thus, the next logical question to be answered was 'Could a virus be causing this Stat-1 depletion?' " Cocchetto continued, "Parainfluenza Virus-5 is a virus that had to be seriously considered as a possible piece of this medical puzzle because it directly targets and destroys the Stat-1 protein." Gail Kansky, President of the NCF stated, "Once we determined the status of Stat-1 in patient blood samples, we knew that we had to look for possible evidence of Parainfluenza Virus-5 infection. It was during this phase of our own research that we actually learned of Dr. Steven Robbins' discovery of Cryptovirus specific antibody reactivity in patients with CFS." Dr. Robbins had tested fifty- six serum specimens from patients who had been diagnosed with CFS along with eleven matching cerebrospinal fluid samples obtained from physicians in Brisbane and Southeast Queensland. Dr. Robbins had determined that 96 percent of the blood samples and 91 percent of the spinal fluid samples tested positively for Cryptovirus specific antibodies in these CFS patients.

The National CFIDS Foundation's own research began to dovetail with that of Dr. Robbins. Scientists funded by the Foundation performed numerous tests for Parainfluenza Virus-5 that included antibody as well as PCR specific probes. Antibody testing provided some initial hints, however a PCR specific probe picked up the infection in a former patient of David S. Bell, M.D. and Paul R. Cheney, Ph.D., M.D., both considered well known specialists in the field of Chronic Fatigue Syndrome. Kansky commented, "Though our funded research continues in diagnostic testing, our findings have served to highlight the important work of

Dr. Robbins and the role of Cryptovirus and Parainfluenza Virus-5 infection in CFS."

NCF scientists utilized the NIH Genbank database to find the nucleotide sequence for a specific viral protein of Cryptovirus that matched 100 percent to the porcine (swine) strain of Parainfluenza Virus-5 known as the SER strain. In 1994, scientists at Bayer AG in Germany first isolated the SER strain from swine with Porcine Reproductive and Respiratory Syndrome. "This may represent a zoonotic process since zoonotic viruses are those that can be transmitted between animals and people" stated Cocchetto. Kansky commented, "Here we have what appears to be the same viral strain of Parainfluenza Virus-5 on two continents and in two different populations, swine and humans. Given that the NCF found Parainfluenza Virus-5 in one CFS patient in the United States certainly raises the bar." The Foundation is currently funding further research.

The National Institutes of Health (NIH) has several ongoing grants in the Parainfluenza Virus-5 field. Currently, however, there is only one U.S. scientist specifically funded for research on the SER strain of Parainfluenza Virus-5 by the NIH.

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(1) "Limina Biotechnologies, Inc. is a recently formed subsidiary of Global Medical Technologies, Inc. that was established for the purpose of merging Cryptic Afflictions LLC and Global Medical Technologies, Inc. It is the intent of management to spin off this newly formed corporation once the merger is completed so Limina can raise capital through its own IPO," according to the company's website, http://www.globalmedicaltech.com.

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Founded in 1997, the National CFIDS Foundation has grown to become the largest, all-volunteer patient organization of its type in the United States. The Foundation has no paid employees and is funded solely by individual donations for the primary purpose to fund medical research into the cause and treatment and/or cure of Chronic Fatigue Immune Dysfunction Syndrome (CFIDS/CFS).

http://www.usnewswire.com/

Has it occurred to you that perhaps it's not parasites, but something else? If you had intestinal parasites, you wouldn't feel them swimming in your hands and legs and head.  Also, intestinal parasites wouldn't show up in your urine. Maybe you should talk to a psychiatrist instead?

Look up formication and Ekbom's Syndrome.

I'M BACIALLY IN THE SAME BOAT AS U R I'VE GOT THE DEPRESSION & ANXIETY AMONG OTHER THINGS, THE VIOLENT MOOD SWINGS THAT SEEM TO COME WITH THE DEPRESSION I THINK IS WORSE THEN EVERYTHING ELSE I HAVE, I KNOW HOW YOU FEEL, I WAS RAPED IN 2003 SO I'M STILL DEALING WITH IT, BUT I'VE HAD DEPRESSION MOST OF MY LIFE, I'M IN COUNSELING AGAIN AND IT SEEMS TO HELP SOME. YOU CAN EMAIL ME IF YOU WANT AT littlecolt66@yahoo.com  I AM A FEMALE     COLT66

You did absolutely nothing for him to get sarcoidosis.  It is believed that it can be either genetic or environmental, neither of which is your fault.  It just is what it is. 

  

By the way, my mother played it up and I took advantage of it and became very spoiled although I was 28 when first diagnosed.  My brother grew up 70% deaf and she allowed him to use that as an excuse for everything....he got bad grades because he couldn't hear the teacher, he couldn't mow the lawn because it hurt his ears, etc.  He's 48 now and still uses these excuses.  Yes, I sometimes use disease to get out of things too!  I beg of you to somehow lose whatever guilt you feel and just know that it's in God's hands and you had no power to give or take the disease.  Just don't baby him because he may like it and let his symptoms appear greater because it feels kind of nice to be spoiled.  You're a good and caring mom so don't get baited!