Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Whats wrong with my body?

i have trigger points too, the worst active ones are in my thoracic back, but for me, if i or a PT tries to massage them out, no matter how gentle, hard, etc (i had a very knowledgeable PT with lots of experience with trigger point therapy), they just rebound worse causing all the nearby muscles to spasm terribly. however with that said, ultrasound, and trigger point injections have been a godsend for me. so i agree with the trigger points causing a lot of problems, however, massage (pressing them out) does not always work, but other methods still can even when the massage just makes them worse.

some of my muscle stiffness is from trigger points, but some of it is from tendon/ligament/joint problems, instead.

i still wonder if starch in my diet is really the culprit to my problems, my short time on the NSD did nothing for me, and my long term commitment to the LSD has done nothing for my arthritis as well, but i stay on it, as it has been quite beneficial for my blood sugar and cholesterol. i still wish i had the option of at least trying the biologics........

That looks like a great book! I think I'll try and get me hands on a copy.

i assume i had very quick improvements with NSD because the previous 5 years since clinical diagnosis of AS, ive been going to PT every 9- 14 days without exception. id guess this back treatment never allowed the starch glue in my back to properly "set". just my thoughts...nothing else.

Hi,everyone. Sorry just got back after a busy week. Going to try to reply the bestest I can =D

For Inanna, At my worst period, I had a elevated ESR of 106mm/h, CRP of 101.8mg/L and platelet count of 857 ths/ul. My MRI scans showed suggestive Inflammatory Synovitis and the movement of my knee was 50 degree to 130 degree ( I was doing half squads while standing LOL). This was only for my knee thou, I've had no back aches or neck strain. The symptoms started at both my knees.

Since I've been on Humira, my average C reactive Protein would be a 5.0 (Normal range would be 0.00 - 10.00) and my ESR would be a 2 ( Normal range is 0 -10)

And I think you're right about situational pain cause today my neck and back feels fine, no pain at all but guess what, my knee hurts now =(. Gotta find out why the pain is running all around my body. I'll see my rheumatologist in a months time.

And now to address the weanning off humira part =D

My rheumatologist was trying to arrest the flare, cause before Humira I was using only arcoxia, Salazopyrin, Norgesic and zimor(stomach med) to threat my spondylitis.

Salazopyrin would be generally considered a "slow" medication, It could takes months to see the full effect. Salazopyrin did work for me, it halved my ESR and CPR while I was on it, but mid way during this treatment I flared up badly again and my dad suggested to try the Humira.

My Rheumatologist also stated that the immunity system while active is very hard to treat. By injecting Humira, we're trying to clam the immunity system down then treat it with DMARDS (methotrexate, sulfasalazine etc etc etc) Sneaky isnt it? Well the spondylitis isnt the only one who can be sneaky, us too hehehe take that spondy!!!

My rheumatologist will be weanning me off the humira slowly, but not completely. What he will be doing is trying to lengthen the duration in which I need to take a jab.

I'm currently taking a jab once every two weeks( with daily dosages of Salazopyrin, Norgesic). He will then try to change it to once every 3 weeks WHILE keeping the same amount of dosage and then lengthened it again and so on and so forth

Just going to keep lengthening it slowly so my body will be less reliant on the Humira and then cut it off.

During the duration of this treatment, it will be monitored closely by blood test and X-rays and my rheumatologist.

This process could take 2 - 5 years. What will not change is the DMARDs. He says I will have to be on a life time of pill poppings. The humira can go but not the DMARDS, that has to be the base line of the spondylitis treatment. Oh yes and exercises =)

I hope it works for you.

I still do not understand weaning you off Humira. By the way - Humira IS a DMARD, one of the strongest and best we currently have.

I wish you luck and truly hope it works!

Jewelz

Isn't Humira a TNFa blocker?

He skeptical about the NSD cause he says spondylitis can be triggered by just about anything. Even a small flu could trigger a response off the immunity system.

And to date, no one actually knows the real trigger of spondylitis. Genes do play a fact, it shows you could be a carrier of spondylitis but exactly what triggers your spondy at this time, at this age they do not know. Hence him being skeptical. It could be a simple flue, or even just a fall =/

Anyway is there any test I could request for to see if theres any Klebsiella in my colon. ( you know these medical people, they need to see the evidence before they'll believe anything)

I'm sorry if I seem to be a wet blanket on this NSD stuff. Its just that I'm constantly hearing both sides of the story. If anything I'm more curious =)

Anyway I'm going to work out a NSD plan soon. One question thou. Does NSD mean I'm not allowed to eat fruits and vegetables cause plants produce starch and then converts it to sugar during photosynthesis. Would this mean there are traces of starct in fruits and vegetables?

And what of water fasting? Anyone every heard of it? would water fasting have the same effect as NSD?

Still willing to try. WOrth a shot.

howdy, if you want to get a NSD going the start point is this link:
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=showflat&Number=101430#Post101430

Yes, Humira is a TNFa blocker but TNFa blockers are DMARDS. Disease Modifying Anti Rheumatic DrugS.

I think NSD can work for some people because maybe it's something in their digestive system that's causing the symtoms. For me, I did NSD and gave up all night shade veggies too. I still don't eat anything overly starchy or white. But it never did anything for me, my disease kept raging on. And you are right about the gene being set off - my disease was set off by a terrible serum sickness/type IV hypersensitivity reaction.

Hope you find what works for you.

Jewelz

Hi RB, yes, Humira is a TNF blocker, but it is considered a DMARD, biologic tho it is.

You'll find most doctors are sceptical about NSD. And I would agree with him that nobody knows the real trigger, despite claims that are made to the contrary. That said, the diet does work for enough people that it is worth taking a good look at, and giving a good honest try. It may or may not work for you personally as part of your treatment plan, but you won't know until you give it a good go.

I'll let the real NSD diehards answer your questions on it.

Hugs,

Hello RB,

Just wanted to offer up my greetings and welcome you to KA! I hope you're able to find all the information and support you need while you're here.

I saw in one of your first responses in this thread that you mentioned the NSD to your doctor and he totally blew it off. While I don't personally use the NSD (long story), I do believe it works for people. That said, I am not surprised at all that your rheumy totally poo-poohed it when you mentioned it. As the folks who have thrived on the diet will tell you, there are too many doctors out there still who refuse to ever look outside the box and believe that the pharmaceutical course of treatment is the ONLY course of treatment (well, those docs are pretty much always willing to include physical therapy and other similar accepted modalities as part of a treatment plan, but the key thing there is that PT and other forms of therapy are long-standing, accepted forms of treatment as well). In addition, it shouldn't be underestimated that the two conventional therapies I just mentioned--the pharmaceutical course of treatment plus physical and other therapy plans--all have one big thing in common: someone can make money off them when they are prescribed to treat an illness (any illness, not just AS). I'm not as cynical as some here at KA, as I do not believe that every "mainstream" rheumy who sticks to meds and PT is simply in it for the cash. No, I think they do it because that's what they've been taught, that's what they've seen work, and that's waht they think they need to prescribe if they are to be considered a "good doctor."

Luckily, there are more and more doctors out there who have finally realized that thousands of years of history can't be wrong every time and that many homeopathic and alternative medicine treatments actually do work. And, as the medical community has dug deeper and studied some of these ancient treatments, they've often discovered that they do in fact work because, gasp, there is some scientific reason for them to work! Whether it's the discovery that there are substances inside some plant or root that naturally mimic known pharmaceuticals or that a treatment like acupuncture has scientific merit for reasons previously unknown, some doctors out there are seeing that not ever cure comes from the research lab at Smith-Klein-Gallaxo or through the patient being committed to doing his/her stretches and getting ultrasound therapy.

Unfortunately, those docs are still too few and far between, and one thing we've learned here at KA is that it can still be very hard to convince your rheumy that there is a concrete, scientific reason that the no-starch diet works. Some KA members have had success printing out materials here at KA that the NSD champions have compiled through the years and taking them in to show their docs, who then do agree that it is worth trying (sadly, many have met with the opposite reaction, as even when they read about Dr. Ebringer's work and see a fairly large body of scientific evidence backing the diet, they still discard it as quackery). It is up to you to decide what kind of doctor you have: If you think that he is one of the open-minded types who would seriously study any materials you take to him, then by all means, I encourage you to do just that. If, however, you've already seen enough evidence to know that your doc would instantly shut down if you brought up the idea that there was scientific evidence to support the NSD, then you should probably trust your instincts and not bother wasting time printing anything out.

No matter which way you go, however, I encourage you to not let your doctor's initial reaction stop you from trying the diet. There have been far, far too many success stories here at KA to think that the diet isn't a very important weapon in the fight against KA (and maybe we'll eventually learn it was the KEY weapon--some here already believe it is), and really, what have you got to lose by trying it? Certainly not money! Besides, what could be better than, after trying the diet for a couple months, walking into your doc's office so you can tell him that you feel fantastic thanks to the diet and that you won't be needing any of the standard meds used to treat KA? Even if he still scoffed and said you were just experiencing a placebo effect, you could walk away knowing that you and your open-mind probably wouldn't be seeing him again any time soon!

Good luck if you do try the diet, and once again, welcome to KA.

Brad