Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group HLA-B27 negative but LSD has helped more than drug

I got blood test results back and am HLA-b27 negative with a very high anti-CCP reading which is strongly linked to RA.

The reason I am posting here is I went on the LSD and my symptoms dramatically reduced to 5% of what they were and this has been consistent now over a few months with occasional mini-flares.

I am trying to heal myself because I know if I leave it up to the doctors it won't happen. I can't help but wonder if there is a bacteria in my system that the LSD is serving to contain and stop it from proliferating as much as it did when I had the major flares.

My bloods showed anemia plus blood in urine and high erythrocytes and low WBC count. I'm not expecting anyone to know very much or care about this but I'm just posting it in case there is someone who may have some answers here.

Thanks

That's great news! I too am HLA B27 -ve and have had great results from the NSD.

I have a mild - moderately positive rheumatoid factor - steadily creeping up despite NSD - rheumatologist is not sure whether we should pay much heed to it in my case but it seems to have been accompanied by a changing picture with bilateral peripheral joint swelling and pain - possibly I have RA as well as a spondyloarthropathy.

However - I would advise you to keep an eye on your anti - CCP and get it retested every 4-6 months a couple of times to see if you can se a trend. A strongly positive (high) anti CCP is indicative of aggressive and destructive joint disease.(usually RA)which can be rather silent in terms of pain and joint swelling, but when you re-X-ray or do an MRI there can be rapid degenerative changes in the synovium. (joint space).

Thanks for this info!! The thing that you wrote is something hopeful to me, I am B27 negative too! At the moment I am on LSD that is NSD at some days, did 2 days fasting also, but at the moment I have MORE pain than usual.

Hi, Ktrob:

Mostly, I want to reinforce what Louise has said--EXCELLENT advice!



My sister is a microbiologist and I constantly ask her about this stuff (getting OLD and can't keep it in my feeble brain), but I thought erythrocytes were red blood cells. When I had active disease with blood in urine it was due to kidney stones (gone over 180 months now! ...knock wood). It does not take a lot of blood loss to lower red blood count, but WBC 'should' be elevated...maybe. Will ask; I do care!

So glad You have found some relief with LSD; every patient should participate in their own disease management and avoid being at the mercy of physicians as much as possible!

For RA, Professor Ebringer sent me a dietary regimen, but other people have reported that NSD/LSD, in general, is a great anti-inflammatory diet and it has helped in many delayed-onset heritable conditions, even Lupus SLE. I will soon post the diet in the RA Forum, for those interested.

HEALTH,
John

Hi Ktrob,

I have similar labs to your labs. I have a high anti-ccp reading negative hla-b27. I was diagnosed with RA at my second appointment with a rheumatologist. The no starch diet really helps me a lot. I even lowered my labs by half(sed rate) due to changes in diet. My sed rate is in normal range now!!

I had ALOT of pain so I had to eliminate nightshades and dairy too. Also I just a little of sugar and meat. It has made a world of difference for me. I hope the diet works for you.
You might do fine with the low starch diet. Take care.

John,
I would love to see Ebringer's RA diet regime in the RA section. My sed at its highest was 56 and now it is 26 normal!, just from diet change!!!

Hi John and Ktrob,

I wasn't sure whether the reference to a low WBC count related to the blood or the urine. If blood then could be transitory and might be due say to a virus. If urine then a low WBC is OK for a normal urine - essentially don't expect there to be any white cells in urine. Remember the ratio of RBC to WBC in blood is about 500 to 1. Therefore a chronic blood loss due to kidney disease will raise the RBC (erythrocytes) in urine, as in your case, John, and simultaneously lower the blood RBC causing anaemia.

Cheers David

Hi Louise. Thanks for your reply. I hope you don't have RA or if you do it doesn't cause too much trouble. I unfortunately have a high anti-CCP so I am now nervous about my future since my mother and brother have bad RA. It does keep me a little more motivated than the average person to be strict with my diet. Nice to meet you.

Hi John,

I'm guessing you also have RA? I wonder if I have kidney stones since an ultrasound showed white unidentified round things in my urethra. Perhaps it's time to look at it again. I have read that kidney stones are common in RA. I think diet has been my saving grace so far however I am being strongly recommended drugs like methotrexate. Taking this drug is so far away from what I want to do but I'm now nervous since high anti-CCP and family history tells me I will have bad RA in the future. Any thoughts are welcome.

Hi Valsmum. It's great to hear that LSD is helping. You mentioned low see rate? Is that different to anti-CCP? I noticed my anti-CCP went from 56 to 70 despite LSD but other indicators of inflammation were low? I wonder if my anti-CCP should have gone down. Any thoughts on this?

Hi, Ktrob:

No, I do not have RA but very interested in this:

Professor Ebringer sought ways to differentiate between early AS and early RA using non-subjective methods. His group already discovered high IgA titers to the Klebsiella-specific immunoglobulin in AS patients, and later a different immunoglobulin produced in response to a different infection for RA patients: Proteus mirabilis often following UTI; urinary tract occult focal infection that requires more extensive treatments and some minor dietary changes. Dr. Mercola, however, uses starch-exclusion to help treat the inflammatory conditions of chronic disease in general.

So many sequelae overlap between AS and RA, and all of us should be mindful of this, knowing that the B27 positive result does not exclude the potential for RA in addition to AS.

Kidney stones are a natural part of advanced AS, and I was producing them at the rate of at least 3 big ones annually--when I had active disease (now almost 180 months ago). I was able to deal with them, eventually, through some natural methods I found out about, but avoidance is so much easier!

HEALTH,
John