Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group LSD + Enbrel or AP??

Hey, Ruth:



It depends upon what the treatment is. I once confronted a physician doing an NSAID study and it was my belief then that, if pain is gone the disease activity would decrease. He was too smart for my "logic," and told me that, if I took some narcotic to help me ignore the pain, that would not mean the reason for the pain was going away. NSAIDs in particular do decrease pain (and also disconnect us from understanding the cause and effect), but in my case they made me much worse. I support the use of the biologic drugs, but they might not decrease actual disease activity very much, but even a little is good. But back to diet (and antibiotics)--because I am by now totally convinced AS is caused by Kp--if symptoms decrease because we are on the NSD and antibiotics (NSD can take a long time, but antibiotics take about four days to be convincing, provided the groundwork of LSD/NSD has been established), then disease activity is surely halted. This has also been my personal experience.

We do need supplementation, not because of diet but because of AS and especially if doing the diet, it is important to help things along by providing enough healing resources: Lysine, vitC, vitE, niacin plus niacinamide to help heal the gut. Small amount of good yoghurt, also (2oz at a time as this can trigger AS): Stonyfield Farms, or Brown Cow brands are the best and safest. Important to get EFAs especially EVOliveOil, sip by teaspoonful throughout the day, before each meal. GLA evenings from borage seed oil. Oils are not adulterated by starches, but some manufacturers use fillers; it is best to just steer clear of anything GNC has available, and read labels thoroughly: Schiff is my favorite brand but they do have some things that are off-limits. NOW is a fine company, also. Cannot take the Longevity (Dr. Wallach's brand) stuff because it has prebiotic (FOS), but Miracle 2000 is a liquid vitamin that seems to be safe. I have purchased Puritan's Pride stuff with good results, but they do put starches in some of their products (unnecessarily). I take the following minerals regularly: Copper, zinc, magnesium, calcium, cobalt (vitB12), selenium ("Ultimate Selenium" from Youngevity that also contains vits A,C,D,E and zinc, copper, chromium, also). Most of the minerals I take are chelated. The vitamins I take are: Bcomplex, vitD+A, vitE, vitB12 additional (I'm old), vitC, additional niacin. I take EFAs almost daily still; the EVOliveOil not as much anymore and since all symptoms of active AS have vanished.

On occasion I also take iron, edible iodine ("Atomidine" from Heritage or Baar), creatine (when working out).

The main thing is what I don't take: NSAIDs even aspirin, much dietary starches (although I am by now not sensitive to these I just don't need the empty calories and excess weight). Unless doing a fast or cleansing regimen, I do not take antibiotics very much anymore, but when I do I drink colloidal silver (I make it by the gallon), oregano oil, and a few other things.

We have at sometimes cross-purposes, the goals of avoiding AS activity but also healing our tracts; it can be a delicate balance and I often did not know whether I was slowing down healing for the goal of never getting into another flare. With patience and perseverance it all works out.

HEALTH,
John

i tried doing it without a biologic. couldn't find a long term nsaid due to gastritis and edema if they worked.

did find that LDN helped the enthesitis a lot.

did find that i was allergic / sensitive to casein in dairy and yeast in bread items so stayed away from those and that helped my gastritis (and maybe is helping to heal up the GI tract?)

started a probiotic, still take probiotics. helped my constipation maybe?

vitamin C helps my immune system.

the other supplements i've listed below seem to help so i stay on them.

even with all that, was still flaring enough that it was either methylpred every 10-13 weeks or going on humira.

went on humira. still do the other stuff, though haven't needed methylpred in over a year now.

i also do a lot of non-drug things: ultrasound as needed, chiro, cortisone injections into my neck as needed (bone spurs press on nerves pretty badly but the shots help), used to get SI joint cortisone shots but the humira now makes that unnecessary, exercise, the right chair, the right car, sleeping in the recliner, hot showers, etc.

its a holistic approach. I'd have gone the "natural" route if i'd been successful with that, but in the end, i really needed the humira. best thing ever.

Just picked up my first 4 auto-inject Enbrel syringes so we'll see in a very short while if anything changes.
I know some get results right away and others wait for the longest time and for others nothing happens at all.
I was taking Humira for 5 months and never noticed any real benefits so I stopped.
Here's hoping.

good luck Timo!

Good luck! Just find a fatty spot, Timo, and hold still once you shoot the injector. Makes it much less painful.

Love and Warm Hugs,

So far, I feel less inflammation and am a bit more limber. Good signs

Yep, this time I used my upper thigh and the pen worked quite painlessly so that is excellent. Can't wait to start bungie jumping and parachuting etc....heh.

Well Timo,

Looks like you are feeling better... that is encouraging. Hopefully it continues.

Tim

John,

Thank you for the supplement recommendations. What do you think is a good amount of Lysine for me to start with? I'm getting most of the other vitamins and minerals in my powder supplement.

BTW, I was greatly encouraged when I went to my primary doc last week. I gave her a copy of Dr. Ebinger's paper (I think it was from 2006) and a copy of your AP protocol. She looked them both over while I was there and seemed quite interested. She wants to test for Klebsiella as well as some of the other bacteria Ebinger mentions in his paper, and depending on what the tests show, I think she may be inclined to consider trying the antibiotics. Yay!

Thank you so much for sharing all of your experience with those of us who are trying to kick this as naturally as we can.

Ruth

I went 20 years both pain free and drug free. In those 20 years I had 12 thoracic vertebrae fuse without even knowing it. I think this is rare to happen and the location of the damage helped immensely in hiding the disease. Even though I golf all the time, any loss in mobility in the thoracic area can be hard to notice. Despite the fusion I still have full mobility but am now having thoracic pain LOL??

I'm now on Humira and 2x celebrex to try and prevent or at least slow fusion in my neck and lower back. I think typically if lumbar or cervical damage occurs it would quickly become noticeable as a loss of ROM.