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#519503 - 03/15/19 02:16 PM HLA-B27 Negative, Will NSD Still Work?
Has777 Offline
New_Member

Registered: 03/07/19
Posts: 8
Loc: Suffolk
Hello everyone, I'm in the early symptoms of AS, and they're still diagnosing things. I have loads of peripherals that seem to keep on spreading. The initial symptoms showed up in Dec 2018. I'm worried about the rate of progression.

I'm HLA-B27 negative. Can I still get help from NSD?


Edited by Has777 (03/15/19 02:16 PM)
_________________________
Bryan Hassler

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#519504 - 03/15/19 03:51 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6092
Loc: Reno or SFLU Philippines
Hello, Has777:

Yes, diet can be made to work for everyone with AS.
When a person gets a negative result from the HLA B27 test, but has clear symptoms of AS, I wonder about the reliability of the test; >30% of the serological tests have been false negatives.

This is an important issue because a patient with a true negative result has a greater chance of having Crohn's Disease, according to Professor Ebringer. Diet of course will still work, but any course of drugs can do a lot of unnecessary damage and also the proper choices of foods will be important.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519505 - 03/15/19 04:10 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: DragonSlayer]
Has777 Offline
New_Member

Registered: 03/07/19
Posts: 8
Loc: Suffolk
Thanks for the reply, John.

Do you mean that true negatives have a greater chance of developing Crohn’s? And should I be avoiding medications?
_________________________
Bryan Hassler

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#519508 - 03/17/19 06:34 AM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6092
Loc: Reno or SFLU Philippines

Hello, Has777:

Not really; I would never tell anyone to avoid their medications. Problem is that yes people with Crohn's are less likely to possess the HLA B27 antigen and it was this group that Professor Ebringer was most concerned with because he missed it in his studies and it is such an obvious one he later confirmed was caused by the same germ. This is something I knew long before Ebringer's work because I had a close friend with Crohn's and it just had to be related to my disease.

So, although I believe that one can acquire AS and (probably Crohn's) through improper medication (anything that compromises the gut), this is probably a transient event in the overall scheme of things and should be reversible to a great extent under proper disease management.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519510 - 03/17/19 02:46 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 168
Loc: Canada
I am HLA B27 negative but have had experienced undeniably positive improvement with NSD. It's been life changing.

While I had severe SI joint pain in my late teens and twenties, my pain is now primarily in my fingers, knees, neck and the tendons in my left hip and knee. The link is unmistakable - when I eat low starch my pain is 0-1, when I get cheaty my pain and stiffness skyrocket,

I've been tested twice for HLA B27, both negative. I'm inclined to believe the result and instead wonder if there is another implicated genetic variant that is yet undiscovered. I also wonder if this might that would account for cases that don't fit classic AS. I'm not the only member of my family with persistent back/neck pain and arhtritis in multiple places.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

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#519511 - 03/17/19 02:52 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
Kellybells Offline
First_Degree_AS_Kicker

Registered: 01/21/17
Posts: 168
Loc: Canada
I am HLA B27 negative but have had experienced undeniably positive improvement with NSD. It's been life changing.

While I had severe SI joint pain in my late teens and twenties, my pain is now primarily in my fingers, knees, neck and the tendons in my left hip and knee. The link is unmistakable - when I eat low starch my pain is 0-1, when I get cheaty my pain and stiffness skyrocket,

I've been tested twice for HLA B27, both negative. I'm inclined to believe the result and instead wonder if there is another implicated genetic variant that is yet undiscovered. I also wonder if this might account for cases that don't fit classic AS.

I'm one of four known members of my family with persistent back/neck pain and arthritis in multiple places. My brother also experiences IBS thatbstarted arpund the same time as his joint pain. Rheumatologists have dismissed several of us separately because our disease patterns don't fit their textbooks and our testing has been negative. But we very obviously suffer from an inflammatory arthritis of some kind.
_________________________
Suspected USpA. HLA B27, xray, u/sound, blood tests all -ve. Ancient history of plantar fasciitis, SI joint pain, knee arthritis. Recent history of tendinitis, neck pain, debilitating finger pain and stiffness (especially mornings). No diagnosis, no meds.

2010 - stopped eating dairy
2012 - stopped eating wheat
2014 - stopped eating all grains
Jan 2017 - discovered NSD - 98% improvement in symptoms, continually amazed by my results, wish I'd found kickAS sooner

Top
#519514 - 03/17/19 06:04 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Kellybells]
DragonSlayer Offline
AS Czar

Registered: 09/05/01
Posts: 6092
Loc: Reno or SFLU Philippines


Hi, Kellybells:


Quote:
I've been tested twice for HLA B27, both negative. I'm inclined to believe the result and instead wonder if there is another implicated genetic variant that is yet undiscovered. I also wonder if this might account for cases that don't fit classic AS.


Yes there are several already-identified MHCs that can be involved in AS: HLA B7CREG, B60, B39, and a handful of others. Additionally, the MHC is nowhere close to the whole genetic picture. Just one example of this is certain types of B27 will never produce AS due to other, protective genetic factors.

It would be interesting to see the entire transplant workup of people with AS--especially those who are negative. It would be very unlikely that two negative results would be false, but with the old serological test method this is still very possible. I only trust ELISA and Fc or dna-level testing anymore.

HEALTH,
John
_________________________
Important AS Resources

Professor Ebringer: On Diet and AS;


RED ARROW --> Philippines

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#519515 - 03/18/19 07:06 AM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
Smed Offline
Superior_AS_Kicker

Registered: 09/05/01
Posts: 951
Tested negative twice but get results from starch reduction-medication free 9 years now

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#519703 - 06/11/19 06:47 PM Re: HLA-B27 Negative, Will NSD Still Work? [Re: Has777]
Sassy Offline
Addicted_to_AS_Kickin

Registered: 09/05/01
Posts: 6388
Loc: NH
Hi John. Been a long time. I hope you are well.

Eric was dx with AS at 9 and Crohns at 12. He also HLA-B27 positive. I always said it was from the trash medication he had to take before I was finally able to get him on the biological meds. His Drs of course denied it.
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"You will find as you look back upon your life that the moments when you have truly lived are the moments when you have done things in the spirit of love........."




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