Study reveals new genetic link to scleroderma

[ickyvicky]

http://www.uthouston.edu/media/story.htm?id=1963629

http://www.sciencedaily.com/releases/2010/04/100429132844.htm

Open to thoughts!

[richie]

Hi—The u. of Texas has been trying to make the case for a genetic link for quite sometime —they have established a link among the Choctaw Indians where they conducted extensive studies —I p[ersonally feel its much more environmental —-there are many theories about scleroderma the three leading causes are environmental { silica -certain chemical exposures etc. ]  infectious —mycop[lasma has been isolated in synovial fluid of some SD patients –genetic –certain tribes have staggering rates of SD –Choctaw and Khanawake —-Probaly the real answer is that all three could be factors –however ,what ever the reason -a very strong case for the use of minocycline for the primary treatment has been established –Primarily through the efforts of a very small group of doctors —
richie

[Conniel7777]

I have a first cousin who has the diffuse form. ( I have limited )

Maybe there is a genetic link. something is going on in our family, b/c my neice ( 5 years younger than me ) also has raynauds… doesnt want to pursue the testing to find out if she has anything autoimmune going on with her bloodwork.. I think shes scared to find out. I used to be scared, too.. for years I pretended my raynauds was just a nuisance, even though I knew it could be a pre-cursor for something worse. I should have jumped on the testing back in 97 when the raynauds first appeared…  anyway… 

Due to where we live, I suspect my cousin was bitten by a tick and also has Lyme. (he thought he had Lyme years ago, but the “traditional” docs gave him the run of the mill Lyme tests and he came up negative and that was it, the subject was dropped )

My cousing is also not on AP. he is going the standard route for treatment.

He has other health problems, and I wont get into details, but hes not doing well. pretty much confined to wheel chair, etc…

I thank God every day for Dr. Brown and RBF, and all of the people here.

 

Connie  >^..^<

[Kim]

Connie,

Your family history is somewhat like mine which makes me think we are born with genetic markers for certain ailments and the rest is a crapshoot.  My sister also has SD, and like your cousin, has fallen into the mainstream trap and not doing well either.  She lived in Pennsylvania for a while and did a lot of hiking in the woods, and remembers being bitten by ticks.  After hounding her to take the Igenex test she finally acquiesced 
and tested pos on Band 31, yet still sticking with her local docs and getting worse.  So, we both have the SD/Lyme combo and the one on abx is better, the other is not.  Sad.

Take care…..kim

[Conniel7777]

Kim,

 Have you ever heard the saying “Genetics loads the gun; its how you live that pulls the trigger.”

Well, of course, being bitten by a tick cant really be considered “how you live”, as its not the same as somebody who is pre-disposed to heart disease eating a pound of bacon every day, but..

Still, the saying somewhat fits. I agree with you.. I think genetics pre-disposes us to how our bodies will react if a certain trigger event hits ( like being bitten by a tick and getting Lyme ) maybe in 1 person, that would trigger RA, in another, Sclero, etc, etc..

Thanks for chiming in on this.. it just ads more peices to the puzzle.

 

Connie    >^..^< 

[Kim]

[user=1441]Conniel7777[/user] wrote:

Kim,

 Have you ever heard the saying “Genetics loads the gun; its how you live that pulls the trigger.”

I have not heard this saying, but I like it! 🙂

[Maz]

Just my two cents, but I have no doubt that genetics plays a role in all AI diseases. Genes are, as Connie says, “The loaded gun.” The loaded gun doesn't need to be shot, though. This depends on what is pulling the trigger and something needs to switch that gene on.

My betting is that “the trigger” is likely a number of environmental factors that compromise immune function that come together in various combinations, such as, exposures to toxic substances (heavy metals, silica, petro-chemicals, etc), poor diet, imbalances in gut microbiota, food intolerances, prolonged stress, an illness, accident or sudden shock, etc.

But, “the bullet” that clinches the deal is infection, either latent infection (in bio-film), within one's longstanding pathogen load, or an acute infection, such as a UTI, pneumonia, strep, Lyme disease, STD, etc…and likely a combination of these.

The way to reverse it all?

Dig out the bullet(s) (with appropriate antibiotic therapy and probiotics).

And, make sure the trigger is put on safety (bring body back into balance by reducing stress, taking appropo dietary measures, detoxing, healing gut, etc).

Peace, Maz

[Nico]

I had an aunt that had SD, she looked just like me also, same hair, skin, etc. we could of been twins, but years apart, I know that its Genetics for 80%, the rest are just damn un lucky! LOL. I have talked with so many people but years ago Dr. didn't keep records and also didn't know how to diagnose SD, some still don't!

[Alli]

Hi Richie,

Your message caught my attention.  I have not read the article that was posted by Vicky but wanted to share some statistics that I am aware of.  I have an uncle who is very proactive in bringing water to our small communities/reservation.  In his research and journey in helping to secure “good” water, he discovered that at one time there were 12 people in our area that had scleroderma. 

We thought that was very interesting.  So, environmental, genetic…who knows for sure.  I have sworn off our water for drinking for years, even though they claim it is safe.  We also have a lot of people here with RA.  My aunt had it real bad most of her life.  She passed on a couple of years ago.  She had rheumatic fever as a child, which my mother said was a precursor to a lot of her medical issues.

I am of native american descent and found it interesting that there were that many of us with the disease.  I found out quite by accident years ago that there were 2 white men, that we know quite well who have it.  I always thought that was different because according to my first read of the disease it was a disease that struck predominately women.   I see one of the men every now and then. He and my husband used to do a lot of work together.  We supplied the concrete and he was the contractor.  I remember how hard the work he was doing was on him but he never seemed to let it take control.  The other man, I haven't seen in years.  I need to find out how he is doing. 

Thanks for listening….Alli 

 

[Nico]

We also have 6 in a small area with this SD, quite rare with this disease supposively quite rare itself. So it does make you wonder?
Nico

[richie]

Hi Alli

Interesting –to further the case for environmental –heres some more facts –The Oklahoma Choctaw have an extremely high rate of scleroderma so much so that in 2006 a seperate chapter of the Scleroderma Foundation was opened  on the res –its called the Choctaw  Scleroderma  Foundation yet the Mississippi Choctaw have rather low incidence of Scleroderma –this would raise questions about genetic —-The Khanawake Mohawk of Quebec have a staggering rate of scleroderma –Dr T from Harvard along with Health Canada spent time on the res for research as well as to introduce antibiotic therapy —I have spoken with Lori Jacobs who is president of the Khanawake Scleroderma chapter as well as being the chiefs sister –they tend to place fault on the St. Lawrence river and its polluted salmon —

richie

[richie]

Hi –to further note –being in the concrete business along with that contractor brings prolonged exposure to silica –that is a proven cause of scleroderma–
richie

[paper tiger]

[user=27]Maz[/user] wrote:

Just my two cents, but I have no doubt that genetics plays a role in all AI diseases.

[Maz]

[user=1359]paper tiger[/user] wrote:

I'm curious, as I've always sort of taken away from this community that SD = mycoplasma infection.

My rheumatologist had mentioned something about silica. Essentially, for six years, I was a fine arts student and had frequent exposure to all sorts of chemicals. It's not impossible that silica was one of them.

I am no longer in that environment and haven't been for over a year. But, if silica did prompt my SD, would it mean that I do not have a mycoplasma infection and that AP cannot help me?

Or is the general idea that I definitely have an infection, and silica was simply what compromised me enough to get the infection going?

That also makes me wonder… I live in Montreal, Quebec, and I certainly eat salmon/drink tap water (albeit filtered).

Hi Paper Tiger,

Well, you know I'm only a fellow patient, but my take on this (based on what I've researched) is not that it's an either/or situation, but likely a complex mix of things, not only for SD patients, but other rheumatics, as well. That is to say, that we're probably all exposed to one type of environmental toxin or another throughout our lives…silica may be one, which is found just in sand…how many kids play in sandboxes when young? In fact, I do recall Lynne_G, living just outside Montreal, mentioning chalk pits in her region? I don't remember how she tied this in to her SD, but perhaps she will see this and chime in or you could PM her about it.

However, in just surmising about this, I don't think an environmental toxin is the complete picture. Neither do I think mycoplasma is the full picture. It's probably a mixture of genetic proclivities, environmental exposures, gut issues (70% of immune function is in the gut), and a total pathogen load we've collected during life…with one or a number of triggering infections like adding tinder to a fire. Probably more than half…maybe all…the world's population have been exposed to several strains of mycoplasma throughout their lifetime. They exist everywhere in nature, so much so that it's hard for lab technicians to know if their specimens have been contaminated by mycoplasma or a part of the specimen. Brown didn't think it was the fact that a person had mycoplasma that was the problem…more that the person had what he described as a “bacterial allergy” to the infection and that the body's response was to wall off these organisms, resulting in various rheumatic arthritides.

If it is a “bacterial allergy” then why are rheumatics allergic in the first place? Well, probably because immune function has been compromised by environmental toxic exposures….these might be in the forms of things we put in our bodies or just things in the environment that we're breathing in or to which our skin is exposed.

You don't need to worry that minocycline won't work for you. Aside from its antibacterial properties, it has so many immune-modulating properties that are very beneficial to SD patients, not least of which is to modify collagen production.

Minocycline has greater ability to penetrate the tissues, so you should see better effect using this over doxycycline, too.

Peace, Maz

PS Montreal water is pretty horrible, I have to admit. When we lived there, my youngest developed fluorosis on both her baby and adult teeth. The dentist said it was due to the high content of flouride in the water. 🙁

 

[MINOCINMAN]

[user=27]Maz[/user] wrote:

Just my two cents, but I have no doubt that genetics plays a role in all AI diseases. Genes are, as Connie says, “The loaded gun.” The loaded gun doesn't need to be shot, though. This depends on what is pulling the trigger and something needs to switch that gene on.

My betting is that “the trigger” is likely a number of environmental factors that compromise immune function that come together in various combinations, such as, exposures to toxic substances (heavy metals, silica, petro-chemicals, etc), poor diet, imbalances in gut microbiota, food intolerances, prolonged stress, an illness, accident or sudden shock, etc.

But, “the bullet” that clinches the deal is infection, either latent infection (in bio-film), within one's longstanding pathogen load, or an acute infection, such as a UTI, pneumonia, strep, Lyme disease, STD, etc…and likely a combination of these.

The way to reverse it all?

Very good analogy.

g out the bullet(s) (with appropriate antibiotic therapy and probiotics).

And, make sure the trigger is put on safety (bring body back into balance by reducing stress, taking appropo dietary measures, detoxing, healing gut, etc).

Peace, Maz

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