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#518673 - 05/08/18 03:50 AM BIG DATA project on AS. Does it exist?
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 275
Loc: Central Canada
Is there an organization that is open to the public where a person can voluntarily provide data on a continual basis to help researchers help patients? Such an organization exists for Lyme Disease.

https://www.lymedisease.org/mylymedata/
https://www.mylymedata.org/

I liked the way the woman in this Lyme video talks about the democratization of medicine. https://www.youtube.com/watch?v=dyCG9MELe2w

I began with skull pain, spinal inflammation and other symptoms that strongly indicate AS but I have no kyphosis or ankylosing according to MRI's nor do I have elevated CRP or ESR levels. Also, in June 2015, my ANA levels were zero and all rheumatoid markers were negative. More recently I developed system wide neuralgia, stinging, etc and my ANA level is at a borderline and needs to be checked again. But the decision of two rheumatologists in 2015 were that I do not have AS. MRIs were taken again in June 2017 but in December 2018 only an internal medicine doctor had the chance to look at the results and speculate that my hands were numb. It is time to see a Western doctor!!

But since October 2017 my symptoms evolved to look more like Late Stage Lyme Disease. I also have symptoms of mould illness. The symptoms of all the above can strongly overlap. A clinical diagnosis is difficult and so doctor overly depend on lab tests which are very unreliable in all three illnesses.

But if the big data on all three, or more, illnesses were pooled together then machine learning could aid researchers in the fields and this would get back to the patient much quicker without the outdated middle men called "the doctor" and the "medical book writer" being the obstructive authority. Patients would quickly get prompted for new information and through that action learn of new approaches. Progress would accelerate in understanding and solving chronic illnesses. Many diseases can more quickly benefit from the progress of others. There potentially would be no such thing as an orphan disease.

Democratization of science and medicine will put the patient in control of their illness and the sacred knowledge. Right now we are still very much putting our faith in the wisdom of the doctors/priests.

Dreams is the stuff Quantum Mechanics is made of.

Just my two maos,
Robin
_________________________
HLA-B27 neg, vague AS symptoms in 20s and early 30s
1993:fibromyalgia (age 25)
2013.07:Scratched by a sick cat
2013.08:Reverse blockage in a SCUBA accident
2013.09:Strange sore throat then meningitis
2014:Chronic inflammation at the base of the skull
2014 to early 2015:excess NSAID use developed complete axial inflammation, included psoriasis
NSD helped well and but was not perfect
2018.07: weak +'ve tests for borrelia, babesia, bartonella and mycoplasma pneumonia using Armin Lab, ANA=equivocal

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#518689 - 05/10/18 05:08 AM Re: BIG DATA project on AS. Does it exist? [Re: Robin_H]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 292
Originally Posted By Robin_H
Is there an organization that is open to the public where a person can voluntarily provide data on a continual basis to help researchers help patients?



You post some good stuff on this Forum Robin perhaps you yourself are the best man to start such an organisation.

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#518696 - 05/11/18 04:55 AM Re: BIG DATA project on AS. Does it exist? [Re: Frederick]
Robin_H Offline
Third_Degree_AS_Kicker

Registered: 09/13/15
Posts: 275
Loc: Central Canada
Thanks for the complement and encouragement Frederick. The paradox is that I feel too sick to put myself into such a project, and if I wasn't sick then I wouldn't be inspired.

However, it has been on my mind for a couple of years and after I see how things go during the summer (finally seeing doctors that have no cultural or language barrier) I might pursue the project. A little over a year ago I saw a related career opportunity at Varian in Beijing that I was a perfect match for but presently do not have the vitality to stick to and so am on a, hopefully, temporary early retirement.

As every person must know already, I believe autoimmune disorders are most often driven by infection and can be treated or practically cured by eliminating the pathogens and healing the gut. Detecting, identifying and eliminating intracellular pathogens is a big obstacle.



I would like to continue that list with cases of MS/FM/ALS/AS that have been cured using antibiotics. But antibiotics is a brutal, inelegant tool. Medical technology is closer to being able to make a designer drug that is matched to the patient and the pathogen, than it is at isolating the pathogen; the infectious disease doctors can learn many techniques from scientists that are learning the functional relationship between gut microbes and us. Some current methods in infectious disease medicine are very unreliable and over 100 years old (culturing sick ). That isn't exactly the video I was looking for. I wanted to provide one that demonstrates using forensic PCR with shotgun genomic sequencing in order to find new, unknown pathogens in a tissue sample using inexpensive DNA methods, but I have not stumbled across it yet.

Now another obstacle is getting the tissue sample. The preference is to take blood, urine and stool samples. Doctors are very reluctant to cut out skin, a piece of the bowel, a sample or three of the liver, or tissue from a spinal area. But that is what often needs to be done to find that cause. Right now testing often is analogous to looking for car keys in the house when you know you dropped them in the dark sewer -- you prefer looking in the house because the light is better there. That method of looking indirectly for the infection is mostly good for when you know exactly what you are looking for, not when you are confronting an unknown.

The non-invasive methods of looking into the body are improving and Dr McCoy's tricorder could one day arrive. Perhaps the Rife machine is the beginnings of that effort. And at present I can not see why using Nuclear Magnetic Resonance Spectrums (NMRs) aren't already being used to look at small volumes in the body to identify foreign substances.

Linking massive databases of information from all over the world is needed for the MSIDS project, which AS is a small part of. Programmers that can write machine learning algorithms are a dime a dozen these days. Accumulating large sources of the needed data has been a challenging and time consuming effort in the past. Data holders -- like NASDAQ and affiliates -- charge a lot of money for network access to their data. Aside from the advertising, charging government agencies and corporations money for YOUR data on Facebook is how Mark Zuckerberg makes Facebook more than sustainable. But I feel that Big Data projects for solving environmental and public health problems need to be crowd sourced, in the public domain, and practically free to any organization or individual that needs the information given that they will contribute to it. The way such projects run are through government grants, donations and volunteers. Fund raising is the least attractive task in such projects. Those are good opportunities for marketing students to apprentice.

That is a lot of talent to put together, conferences to attend and dinners to go to, but I have a problem with going to dinners lately; I just can't stomach the wine and cheese!!

May the Force be with you!
Robin

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