posted
This is a new organization that was founded to help furthur the research of a well known doctor. He needs help and we all have an opportunity to spread the word and race toward a cure for so many of us who suffer from Chronic Illness. I hope we can all take this organization serious, as with the future research of this organization could prevent and cure millions of people.
posted
I for one am disappointed that Lyme and tickborne diseases are not even mentioned in the list of illnesses.
Also, if this is a 501c3 charitable organization that needs to be specified on the site. As it stands now noone would know whether or not their contributions are tax deductible.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Bea says: "I for one am disappointed that Lyme and tickborne diseases are not even mentioned in the list of illnesses."
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Yep! Seems a glowing omission.
And unless they consider lyme as they evaluate patients for many of the things on that list is will be a waste of patients' time, money and hope.
I'd love to hear more if anyone contacts them about their work ruling out lyme, all TBD and other chronic stealth infections such as Cpn, HHV-6, mycoplasma.
And . . . if they address liver issues such as porphyria . . . and also heavy metal involvement.
No doctor who treats chronic illness on that list can be a good doctor unless all this is explored.
posted
those were my exact thoughts ... no lyme or co-infections; that's why i posted what i found!
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
Chronic inflammatory Disease is broad term and Lyme Disease is included along with many others. The more broad point is the connection of the pathagen to so many diseases and this is huge.
Lyme disease is an inflammatory disease characterized by a skin rash, joint inflammation, and flu-like symptoms, caused by the bacterium Borrelia burgdorferi transmitted by the bite of a deer tick. Lyme disease was first described in the United States in the town of Old Lyme, Connecticut in 1975, but has now been reported in most parts of the United States.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
This is just my guess, I have not confirmed anything.
Based on our conversations over the past three years, Dr. F has contended that he can get rid of Lyme in about a year. It's that last unknown that he couldn't irradicate.
Case in point: My daughter tested postive three years ago for band 30 and 41. Blood smear showed what he thought was bartonella and babesia, no Lyme ever came up. Treating three years, band 30 is gone. Positive ANA is now negative. But, she's not in remission, yet.
I suffer from fatigue, lung issues, seizures. I only test positive for band 41. Absolutely no lyme or babesia.
My personal belief, and if I might go out on a limb, Dr. F believes this protozoa "mystery bug" is what triggers band 41. Band 41 seems to be the constant with all his chronically ill patients.
Unless someone comes up positive for Lyme, he won't list it as a diagnosis. This is for the patient's protection, as well as his.
That might be why he didn't list it with the other illness. Lyme and co-infections have specific treatments. If you have treated all of those things, and STILL have illness, then it must be the mystery bug.
Again, this bug is the common thread in all those syndromes and diseases. He is looking for the specific drug to kill the specific bug. And, if they can't find a drug to do the job, he wants to create one that will.
So...that's where the funding issues comes in. If he can experiment on tissue samples, then he doesn't have to alert the insurance by doing experimentation on humans ("here, try this").
These are just my personal thoughts. I DO NOT speak on behalf of the doctor. I'm only piecing together what I have gleaned over the years.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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