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#518923 - 08/03/18 07:16 PM Rheumy recommends drugs but we don't want them!
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
My son went to his first visit with a rheumatologist today and all the doctor did was scare him. He totally brushed off the approach we're taking which is the NSD, despite the obvious evidence that my son feels so much better. The dr said AS is the leading cause of blindness in young men and that if he doesn't get the inflammation under control right away it could develop into Crohn's or ulcerative colitis.
It made me mad the way he was insisting that all the research on gut health as the cause of the AS was not documented or supported by "real" scientific research.
Has anyone else experienced this? How do we find a supportive doctor?

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#518927 - 08/04/18 04:47 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Frederick
Unregistered


There seems little point in you even seeing a rheumatologist about your son unless you are going to take his advice.

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#518928 - 08/04/18 06:57 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
kj243 Offline
Member

Registered: 04/24/16
Posts: 27
MLR:

I felt compelled to post from my experiences based on your topic title, because i Have felt this very same frustration and anxiety.

The Rheumy doc who I (went to, am no longer going to) essentially said the same thing. Offering some rather perilous sounding drugs, while at the same time saying "if no spinal changes occur on an X ray then we really dont know for sure". And also not paying any attention at all to how diet has helped the problem.

It was infuriating and tremendously anxiety provoking. Don't let it get to you, is what I would say. Conventional medical practitioners, I'm guessing, haven't seen a large scale long term study(or whatever the hell kind of proof they might need) for NSD drastically improving patients of AS, so they don't believe in it, even at their patients peril.

I just wanted to post in support that it has happened to me and others, and I know it just really sucks and is almost demoralizing.

As far as finding a supportive doctor, I dont know honestly. I just use an open minded general practitioner doc , not a rheumy and I check inflammation markers and whatever I might need to check in blood levels to keep an eye on things.

But yea I just wanted to say I know it sucks.

frederick: i understand you constantly come to this forum to tell people nsd doesnt work, and somebody else said you havent even tried it. Dealing with this problem is already highly anxiety provoking and takes alot of guts and grit. Please don't discourage others.

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#518930 - 08/04/18 07:53 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
MLR, I am so, so sorry.

If you read through older posts you'll find a hundred just like yours: docs saying diet doesn't work/no scientific evidence/highly unlikely, but here, you must take this medicine that *we know* is limited in its effect, won't stop the disease progression, will eventually stop working, and which has terrible side effects. It's mind blowing how resistant they are, even when the evidence is right in front of them and their own solutions are so problematic!

The good news is you'll find hundreds of posts on this site of people like me who have had complete success with diet. Many took drugs for years and were able to stop, permanently. I'm only a year in, but there are posters who are 10 years, 20 years, or even more into this diet who have stopped the disease in its tracks. I really hope some of them will come out of the woodwork to tell you so.

Many of us now lead healthy, active lives. 8 years ago, right before I gave up dairy, I couldn't walk up or down stairs without clinging for dear life. I was only 35. Now, today, I'm that much older and about to ride my bike to the gym for a weightlifting class, followed by an hour of yoga. Life is good.

But the pressure from the medical community is tough to resist. They're supposed to be the experts, right? So let me finish with a cautionary tale: Frederick, our resident crank, who loves to discourage new posters by telling them NSD doesn't work, that it's 'mumbo jumbo', etc. has always done absolutely every treatment recommended by his rheumatologist. Every drug, every new idea, however farfetched (xray therapy!), literally everything. Except diet, which no doc has ever suggested he try. Well, Frederick is now in a wheelchair and suffers from incurable nerve pain. That is not the future your son wants.



Edited by Kellybells (08/04/18 08:39 AM)
_________________________
Suspected SpA. 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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#518934 - 08/05/18 03:07 AM Re: Rheumy recommends drugs but we don't want them! [Re: kj243]
Frederick
Unregistered


Originally Posted By kj243


Please don't discourage others.


I don't post so as to discourage but to point out that there are some of us who don't agree with diet as a treatment for A.S. As someone suggested recently in their post there is doubt that some of those on the Forum even suffer from A.S. To compare like with like every patient must have a definite diagnoses for the same disease.

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#518935 - 08/05/18 03:18 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Frederick
Unregistered


Some very good research in to my medical history there Kellybells. It's good to know that someone is at least is reading my Postings. Perhaps I should change my Forum name to "resident crank"

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#518937 - 08/05/18 07:25 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
Just go away Frederick. You're not welcome and you've been told repeatedly to remove yourself from this forum. Returning to question whether others belong here is completely beyond the pale.






Edited by Kellybells (08/05/18 08:44 AM)
_________________________
Suspected SpA. 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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#518940 - 08/05/18 09:22 AM Re: Rheumy recommends drugs but we don't want them! [Re: Kellybells]
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
Thank you Kellybells. I saw Frederick's post and brushed it off with an eye roll. The reason we went to this rheumatologist is that in order to see the Naturopath that works in the same group we had to see the rheumy first. Now Regy is no longer a "new patient". But we have to wait 2 months to get in. We know this doctor works with diet so that's good. He has also tried to get in to see a Functional Medicine doctor but she's a one woman show and is on vacation through August. It's been frustrating.

The good news is that the NSD is working!!! We are presently in the middle of harvest. Ironically we are wheat farmers. Regy has felt well enough to drive the big trucks we run and actually ran through the field yesterday - I watched him! I fix lunches and all of us, my husband, Regy's wife and whoever is visiting, get to eat NSD. I did make a mistake yesterday and gave him some watermelon that I forgot to test and it did have traces of starch. He's been very strict.
We generally just have meat, salad and nonstarchy vegetable and melon for dessert. (I've lost 10 lbs!)
I have been concerned that he's not eating enough or that he'll get bored with the food choices but he told me the diet hasn't bothered him and not to worry. My son is amazing. He's faced this disease with so much strength and a great attitude. He said the worst part was not knowing what he had but now that he knows he can help himself. His wife is also very supportive. She and I talk about the books we've read and different food choices he can try adding in.
I've also heard from John (Dragonslayer) privately and on this forum and he's offered encouragement and I've found your posts to be very helpful and encouraging.
So thanks so much and don't worry I totally ignore Frederick's posts.
Lori

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#518947 - 08/06/18 08:48 AM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Kellybells Offline
Journeyman_AS_Kicker

Registered: 01/21/17
Posts: 131
Loc: Toronto, ON
Great news about your son! He's lucky to have such good support. Especially in a family of wheat farmers!

After my own terrible experience with a rheumatologist, I also followed up with a naturopath. While he wasn't aware of the NSD, he was certainly on board with it. And when I explained the theory that the root cause is bacterial, he suggested the 'weed and seed' protocol that I now follow and have had a lot of success with. I still stick to a pretty consistent diet, but I've been able to increase my tolerance for starch to habitually include veg like carrots, squash and beets and fruit like apples and figs. And occasional cheats don't slay me like they used to.

Hope the naturopath at this place is a good fit. All the best!
_________________________
Suspected SpA. 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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#518948 - 08/06/18 09:30 AM Re: Rheumy recommends drugs but we don't want them! [Re: Kellybells]
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
I know you've listed the weed and seed in other posts but would you mind listing it here again since I am lazy and don't want to go back reading.
I have a source for essential oils and I was just looking at the oils I have. I think you mentioned oregano oil and maybe peppermint?
Also have you tried Kefir? I want to make some for Regy but at present I'm pretty sure he couldn't tolerate dairy. I was hoping kefir would be ok since it contains something like 10 times the probiotics of yogurt and can compete successfully with bad bacteria in the gut.
You've been so helpful and encouraging. Thank you so much
Lori

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#518956 - 08/07/18 05:28 AM Re: Rheumy recommends drugs but we don't want them! [Re: Kellybells]
Frederick
Unregistered


Originally Posted By Kellybells
Just go away Frederick. You're not welcome and you've been told repeatedly to remove yourself from this forum. Returning to question whether others belong here is completely beyond the pale.



Until I am barred from this Forum I will continue to contribute freedom of speech and all that.

The question of if all those who post on here do actually suffer from A.S. was first brought up be someone else some short time ago. So I was just responding to that.

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#518960 - 08/08/18 12:23 PM Re: Rheumy recommends drugs but we don't want them! [Re: ]
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
This particular thread had nothing to do with that. If you have nothing better to do than to be the nay sayer on threads where people want to discuss their success with healing the gut through diet, maybe you should find a better hobby?

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#518961 - 08/09/18 07:07 PM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
mulehound Online   content
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 680
Loc: USA state of Utah
I had to prove that it was working for me took a year or so. My doctors came around. Don't get discouraged. As for Frederick I believe in both sides of an issue. Left to right, Black or White. One of my most respected friends and I have nothing in common and I mean nothing. We have some spirited discussions.

I developed a friendship with him dealing with crisis and emergency situations. He drives me crazy but he is a good person.

Stick with it you will succeed in the end.
ETTE
Darrel

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#518962 - 08/10/18 05:28 AM Re: Rheumy recommends drugs but we don't want them! [Re: mulehound]
Frederick
Unregistered


Originally Posted By mulehound


As for Frederick I believe in both sides of an issue.

Darrel


Yes very true we should not be too dogmatic about anything. All I do is point out that there is another way of doing things. As I have said before if it works for you then go for it but I will stick with conventional medicine

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#518968 - 08/11/18 10:42 AM Re: Rheumy recommends drugs but we don't want them! [Re: Kellybells]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9794
Loc: Brittany, France (since Nov 08...
MLR - I Completely endorse what Kellybells says, the diet *works. Just check out the diet forum PLUS ALL the success stories (upper case is for doubting-Thomas-Frederick).
I hauled in my own inflammatory problems by following the diet. I did the LSD / low starch protocol. Worked. Do fall by the wayside every now and again, Ho-Hum, up pops the inflammation (usually the spine, of course) then back to the discipline, when all is well again.

As for the rheumy declaring that unless being poisoned with toxic your son would go blind...needs a thorough trouncing. Following 'directives' and no doubt with the help of having his back-pocket stuffed to boot !

Best to your son MLR, he has guts, and is very much on the winning side.

Take care -
MollyC1i - Keeping on, Keeping on, innit smile
_________________________
MollyC1i - Riding OutAS

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#518981 - 08/16/18 08:40 PM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
mulehound Online   content
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 680
Loc: USA state of Utah
Molly I have to say your post is invigorating to say the least. Love your fighting spirit.
ETRE
Darrel

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#518982 - 08/17/18 03:40 AM Re: Rheumy recommends drugs but we don't want them! [Re: mulehound]
MollyC1i Offline
Very_Addicted_to_AS_Kickin

Registered: 01/21/04
Posts: 9794
Loc: Brittany, France (since Nov 08...
Darrel, thank you. Mother said I was born fighting, an seems like I never stopped... devil2 Hope you are still riding you mule. Take care -
Molly - a Keeping on roll
_________________________
MollyC1i - Riding OutAS

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#519023 - 08/31/18 08:18 PM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
MLR Offline
New_Member

Registered: 07/07/18
Posts: 18
Loc: Eastern Washington, USA
Update on my son: He's the best he's been since we started this journey!!! He's been very strict about the NSD but there was something missing. Both my daughter in law and I have read at least a half dozen books and we finally read the book "The Keystone Approach". What and eye opener. It's a compilation of the recent breakthroughs in autoimmune diseases but mostly talks about RA, AS and Crohn's.
Regy finally got in to see the Functional Medicine doctor and she basically recommended the Mediterranean diet that is in the book. It's very similar to the NSD with olive and avocado oils, multicolored vegetables (6 servings) and dark colored fruits (2 servings). And she suggested he rotate between three different probiotics. The past week his improvement has been dramatic. He has no pain for the first time in 3 months. Fortunately Regy is very disciplined with the diet and doesn't mind the limitations. I have been trying to make recipes and encouraged him to try adding different foods just so he doesn't get bored with meals but he said he's fine with eating this way. He still can't tolerate eggs and hasn't tried milk products yet but who knows. I'm hopeful for him and his future!

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#519052 - 09/21/18 06:58 PM Re: Rheumy recommends drugs but we don't want them! [Re: MLR]
Ann1965 Offline
New_Member

Registered: 06/17/18
Posts: 13
I have Psoriatic Arthritis, I did 2 injections of Humira in May and had bad reactions. I stopped them and am now on a no starch diet other than sweet potato once in a while. I just read John Pagano's book and am drinking Slippery Elm tea and Saffaron tea. My rheumatologist is saying I must do Enbrel or Methotrexate and I don't want to do either. My knee, and back hurt and I am getting psoriasis. I use ACV, apple cider vinegar on my head. I am totally confused by this whole ordeal as some people and books say you can do this naturally and then the doctors and other people say you MUST take drugs or biologics. Any information would be greatly appreciated.

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#519053 - 09/22/18 05:41 AM Re: Rheumy recommends drugs but we don't want them! [Re: Ann1965]
Frederick
Unregistered


Originally Posted By Ann1965


My rheumatologist is saying I must do Enbrel or Methotrexate and I don't want to do either.

Any information would be greatly appreciated.


Personally I don't believe in so called "alternative medicine" so feel free to disregard anything I say. Many on this Forum do however believe in such things but they still attend rheumatology clinics. I don't see what is the point in attending a rheumatology clinic unless you are willing to listen to what the doctor has to say. I always go with the science and leave the "mumbo jumbo" to those who feel any benefit from such things.

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