banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Kickas Links
·HOME
·Forums Main Index
·Register!
MEDICAL CENTRE
·Medicine Contract
·AS Patient Guidebook
·Pain Map
·Disease Modification
·Ask your doctor
·AS and RA Papers
·AS Acronyms
DIET CENTRE
·London AS Diet
·Molecular Mimicry
·AS Dietary Primer
·AS Food Guide
SUPPORT CENTRE
·In Memorium
·KickAS Stories
·KickAS Banners
·Donations
Forum Stats
13,120 Registered Members
28 Forums
43,548 Topics
517,271 Posts

Most users ever online: 1,568 @ 06/29/16 03:25 PM
Newest Members
jr07, shpilev, blakeyp00h, MJK, MaggiesMeMe
13120 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
- Tim (Dotyisle)
- Chelsea (Kiwi)
- Megan (Megan)
- Wendy (WendyR)
- John (Cheerful)
- Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
Page 1 of 2 1 2 >
Topic Options
#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?

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

Registered: 03/28/06
Posts: 292
There seems little point in you even seeing a rheumatologist about your son unless you are going to take his advice.

Top
#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.

Top
#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

Top
#518934 - 08/05/18 03:07 AM Re: Rheumy recommends drugs but we don't want them! [Re: kj243]
Frederick Offline
Third_Degree_AS_Kicker

Registered: 03/28/06
Posts: 292
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.

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

Registered: 03/28/06
Posts: 292
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"

Top
#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

Top
#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

Top
#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

Top
#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

Top
Page 1 of 2 1 2 >

Moderator:  Dotyisle, Kiwi, Moderator 
Who's Online
1 registered (Cre8tive1), 40 Guests and 0 Spiders online.
Key: Admin, Global Mod, Mod
Recent Posts
Still surviving AS
by stevec
10/13/18 11:00 AM
Hello kickers... long time since checking in
by Dotyisle
10/08/18 12:28 PM
Health insurance delaying medical services
by mutagen
10/06/18 08:52 PM
Cosentyx. Has anyone had success with this?
by Cre8tive1
10/04/18 04:34 PM
Pain where pectoralis minor inserts into the ribs?
by The_Inflammator
10/02/18 05:22 PM
Skin that burns and is sensitive to pressure
by Robin_H
09/22/18 10:57 PM
How I cured my AS (continued)
by davidchen
09/06/18 02:46 AM
(Views)Popular Topics
"FITNESS" TEAM! - All Physical Activity & Sports 40,095,824
hmmm 2,125,618
Has anyone had Pedicle subtraction Osteotomy ? 1,768,905
What to do about healthcare? Can it be fixed? 1,191,426
User names revisited 965,562
Medicinal Marijuana 891,487
A.S and beds, What do you find best? 883,944
OMG!!!! 834,387
No/Low Starch Diet Success Stories 635,724
THE STARCH CONTENT OF FOODS - THE LIST 461,843