Thread deleted?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/27/2017 10:22 PM (GMT -6)   
Very strange - the thread describing my experience with potato starch for treatment of autoimmune disorders was deleted! I posted scientific rationale with references from the most prestigious scientific journals in the world.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 4/28/2017 12:56 AM (GMT -6)   
sometimes posts go walk-a-bout, or if ya posting and the net goes down, the post does not save. usually a mod will delete spam and such. or for inappropriate posts. if someone spammed your post the o.p can get mistakenly deleted as well, happened to me twice. admin is the best to ask, or e-mail one of the mods for clarification.

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 147
   Posted 4/28/2017 6:12 AM (GMT -6)   
Hi Scott007

I noticed the same was trying to find it yesterday and post the answer as I didn't have time earlier. That was long thread it wouldn't just disappear. I would ask Forum Moderator.

I found your post very interesting though.
RA - diagnosed July 2010 until December 2015

CURRENTLY IN TOTAL REMISSION

Plaquenil, Vit D 700 IU, Vit B complex, Vit C

Warfarin, Baclofen

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/28/2017 7:01 AM (GMT -6)   
Hi Bstrong - Yes, I do not understand. There were almost 600 views in about 5 days. I also get many questions and responded in a timely manner to all of them. I did not want to keep my finding a secret since it could help so many people suffering from autoimmune disorders.

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 4/28/2017 10:41 AM (GMT -6)   
IMO it's probably due to the nature of the initial claim Scott. I was pretty skeptical when I read the title and a whole lot of people have made claims in the past for "cures" for RA so the community (myself included) tends to dismiss claims such as that with little fan fair.

Having had RA for so many years along with several others on this board have tried many things outside the normal FDA approved remedies including 15 months of Paleo which had no tangible effect for myself (I know it helps others) other than seeing that corn products were a multiplier of sorts for inflammation in my case.

There are however tons of people who swear by this diet. I only can tell you my experience with it. However, when after a year I began asking questions of others online about when is this going to start helping me etc I was met with a whole lot of blame the patient rhetoric from others. It made me very skeptical of all the diagnoses of RA to be honest.

The list of cures is endless in fact. I had a Doctor who for 20 years was very willing to work with me on all these theories and was a great help in running tests etc. Unfortunately none of them revealed much in my case.

Hopefully you have emailed a mod or PM'd them and they will bring the thread back maybe with an edit if that is indeed the case. I've not seen threads just up and disappear from HW in the past and I have been around a few years so I am making the assumption that it was modified by a mod. If it was in fact deleted then maybe we should begin a new one, simply posting the relevant articles etc. without making any bold claims.

Take care, -Don

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14995
   Posted 4/28/2017 1:24 PM (GMT -6)   
Scott, I do not think this forum has a mod, we have several forums that do not have mods in them. HW is not without its own glitches as the software is very outdated.

We have a lot of spam here at night & early in the morning. If someone is using their phone to delete it many times posts are deleted & members get banned by accident. I have been banned by accident several times.

I have no idea how your post disappeared. I do want to point out that there are some rules & guidelines here at HW, located at the top. I do not know what post you lost, however, if it was a lengthy one, long posts are not allowed. Same with posting studies, links are allowed, but there again he has rules about links allowed here. If you have not read them, please do so. The admin can delete any thread that is not within the guidelines.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/28/2017 8:44 PM (GMT -6)   
I was looking for it too. It would be nice if it could be retrieved and re-posted, if that is possible.

I started a tablespoon a day and one thing I noticed right away it that it really curbed my appetite. That in itself is a good thing!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/28/2017 10:45 PM (GMT -6)   
To All - Thanks for all of your comments on how the post may have been deleted. I would like to take this opportunity to clarify and debunk a few things.

First, the recent article that I had cited from the journal "Nature Immunology" is a landmark paper. These researchers may very well get the Nobel Prize. One cannot get published in the most prestigious journal in the world without rigorous peer review and highly significant findings. Nature journals only publish groundbreaking research. Just to give you a sense of what is meant by "groundbreaking", the structural elucidation of DNA by Watson & Crick was published in Nature.

We all believe in science - otherwise we would not use drugs like methotrexate, Enbrel, Humira, and all other drugs we take for various disorders. Resistant starch is being held to the same scrutiny in the same scientific journals as drug research.

I think that a little debunking of Paleo would be helpful to many on this site. (By the way, I tried Paleo.)
1) In a nutshell, Paleo advocates eating what our digestive tracts evolved to eat. The 2 main classes of food that we did not evolve to eat are grains and dairy. Nothing new here! It had been known for a long time before Paleo that the gluten in grains can cause inflammation in the gut and a phenomenon known as "leaky gut syndrome".
2) How many Paleo people eat raw and uncooked potatoes? Aboriginal tribes in Africa do not eat their "root vegetables" cooked or boiled. They eat them raw. So, is it likely that our Paleo ancestors ate them cooked?
3) Is red meat really good for you, especially in the quantities that we eat sometimes? It has been proven that not all meat is digested and some makes it into the colon where it is fermented. Some of these fermentation products are known to cause cancer and inflammation.

I have read some blogs in which they demonize resistant starch. I can debunk all of their claims with science - the same science that gave us methotrexate and Enbrel. Until proven otherwise, I'll trust my PhDs.

Post Edited (Scott007) : 4/28/2017 11:02:16 PM (GMT-6)


theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 4/29/2017 2:45 AM (GMT -6)   
personally i am a member that is wary of the foodies out there. some push an agenda and it can get icky. i shy away these days as i have been around the block a bit on hw. too many bung fights. paleo, raw foodies, juice freaks, potato heads, vegans etc. not into it. too many people saying this and that. the food triangle is what i live by, and what dietitians use as there staple world wide. moderation is key. i am a diabetic, and done studies, have had a double pass, hi cholesterol and high blood pressure, i know what is what. not enough is known what is an inflammatory marker, and personally, pain has been binned as it is a dirty word, the buzz is all about inflammation. i have arthritis, osteo and bulging discs, so i get it. cave man ate meat, fish, fruit and vegies, that's what i do, and in moderation. soon there will be something new, but the food triangle has stood the test of time.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/29/2017 3:23 AM (GMT -6)   
Well, that is the beautiful thing, right - everyone can choose and decide for themselves. I personally like to hear different viewpoints and evaluate for myself. Enbrel worked great for me for many years and now potato starch works great for me. We all have the freedom to choose and I chose science.

Sorry to hear that you are afflicted with so much and endured so much pain. Best wishes to you.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 4/29/2017 4:30 AM (GMT -6)   
starch is bad for me being a diabetic. alike you i am merely making a view-point, i do not disrespect your view or anything, was just making a statement.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 1036
   Posted 4/29/2017 4:46 PM (GMT -6)   
Hi Scott007
Sorry I did not get back to you earlier but I have not been on computer for few days as unwell
I am the Forum Moderator for this site and read your post I was unsure if it was ok to post under the HW guidelines so I sent it thru to Peter to let Him Decide and Apparently He Deleted it
the issue is We All Cannot use the site to Promote Any Products or things that may need medical approval All I can suggest is you have a look thru the Healing Well Guidelines that will Help you in the future

anyone can pop me tru a question if they are unsure of anything at all

here are Forum Rules Concerned ;
4. No advertising or links to advertising or "Spam" is permitted.
Advertising or spam is defined as posting a link for the purpose of selling, soliciting or promoting something.
Links promoting fundraising, advocacy, etc. are not permitted.
Links to personal blogs/homepages are allowed in member profiles and signatures
Sharing of links to helpful and relevant web sites and resources is allowed if they are not used for a promotional purpose.

5. No posts regarding research studies, surveys, or clinical trials without prior approval from the forum administrator.

The Link to the Full List of Rules can be found at Right hand side of Forum page just above the box with Rheumatoid Arthritis choice
.
FORUM MODERATOR Rheumatoid Arthritis for 30Yrs. Asthma,Fibromyalgia,Osteoperosis,Cervical Spondalosos,Degenerative Disc Disese,Disc Bulges, Diabetes,Heart SVT & AF, Sleep apnoea,Nocturnal Respiratory Failure,Panic Attacks,Anxiety
on; Methotrexate , Arava , Endone, Targin 20mg (oxycontin) , Prednisone, Metforman(Diabex) , Tambocor. Oxygen & Cpap, Prolia Injection ,Lyrica

Post Edited (BadDay) : 4/29/2017 5:42:40 PM (GMT-6)


Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/29/2017 11:37 PM (GMT -6)   
Hi BadDay - I am sorry but I am completely puzzled by the reason that you have stated for deletion of the thread:

"We All Cannot use the site to Promote Any Products or things that may need medical approval"

Seriously, does potato starch require medical approval? It is found in the baking section of the supermarket! We eat wheat starch every day when we eat bread, but we do not seek medical approval to do so. People on this site take/promote all sorts of diets or dietary supplements without medical approval. Perfect example is omega-3. Another perfect example is some of the posts about Paleo.

I also do not understand why Forum Rule #4 was stated as part of the reason. I did not post SPAM or post any advertising links. I have no personal blog. There is no personal gain for me whatsoever if people take potato starch.

I am guilty of Forum Rule #5. I did post some references from scientific journals, but if you look through the original thread (if it is still saved somewhere), you will see that this was done at the request of one of your Veteran Members. Surely, a Veteran Member must be aware of these rules. I had not read the rules at the time and I was simply being courteous to the gentleman and had benignly provided what he had asked for.

Lastly, many of your members have expressed interest in this thread and were disappointed that it was removed.

Post Edited (Scott007) : 4/29/2017 11:43:40 PM (GMT-6)


theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 4/30/2017 1:03 AM (GMT -6)   
admin deleted your thread, not the mod. i did not see your post, but i did try to give you some heads as to why it might have been deleted. you are the poster, and thus the responsibility falls on you. the mod checked with admin.....got to give the mod credit there.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 4/30/2017 2:27 AM (GMT -6)   
no skin off my nose

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/30/2017 11:08 AM (GMT -6)   
I'd like to make two comments in Scott's defense. First, I think what he did is summarized by the statement immediately below:

"Sharing of links to helpful and relevant web sites and resources is allowed if they are not used for a promotional purpose."

What I saw in his post was a person sharing their experience in an effort to help others. He wasn't out to make any money for himself.

Secondly, #5 below is crazy. I am on this forum, the ulcerative colitis forum and the Alzheimers forum and it is very common for people to share "research studies, surveys and clinical trials." This makes no sense at all. Can someone explain why posting these require "prior approval?" See rule #5:

"5. No posts regarding research studies, surveys, or clinical trials without prior approval from the forum administrator."
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5926
   Posted 4/30/2017 12:01 PM (GMT -6)   
Hi Alice, rule #5 actually refers to the people from various institutions who ask members to fill out surveys for institutions' or companies' research. In those cases, we ask the posters to get the Administrator's permission.

Posting the results of studies, surveys and trials is fine. And I think those are really informative. I think Rule #5 needs to be re-worded!
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

Check out the following site for more info on blood sugar:
www.phlaunt.com/diabetes/

Don_D
Veteran Member


Date Joined May 2013
Total Posts : 548
   Posted 4/30/2017 1:10 PM (GMT -6)   
Scott, can you start a new thread? It would be great to keep one definitive thread going on this where we all can share these studies relating to RS and our progress etc. Just avoid saying "cure" etc and it should all be fine I would think. As you said, we have other threads like the Paleo thread going and anything that helps with this disease is certainly worth considering.

After a week of the 2/3 cup routine I have definitely noticed that my appetite has changed. I don't eat as much food and feel satiated with about 1/4 less in portion sizes. This is a welcome affect for me. With the decrease in activity due to RA and disabilty I first lost so much weight I was far underweight. At one point weighing in at 145 and now after the brunt of the last huge flare up receding I have gained a ton of weight and am 215 which is way way too much for me.

I have an appointment with my Rheumatologist this week. I wanted to take a copy of the article in Nature but I had no luck finding it at our Library unfortunately. We are in a pretty rural area though so it doesn't surprise me. I wonder though if she might actually already subscribe to this journal so I will ask her and give her the name of the study if not.

I am interested to see what she has to say about it. She is a new Doctor for me having had my Rheumatologist of 20+ years retire a few years back.

At any rate, if you don't feel like starting a new thread I will do it at some point. Something with reactive starch in the title would make it much easier to find in thread searches.

Week 1 down! smile

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/30/2017 1:32 PM (GMT -6)   
Lanie,

Ok, thanks for explaining - that does make sense. But I agree that the rule should be rewritten to reflect what it actually means.

Alice
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Use peppermint oil capsules and Bentyl which help during a flare and with IBS symptoms.

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5926
   Posted 4/30/2017 1:54 PM (GMT -6)   
You're welcome, Alice. I know there are misunderstandings about that rule and it appears as if it's broken when studies are posted. Hopefully, we can get that re-worded.

Don-D, you're right about the word cure. That word sends red flags, not only among mods but other members here no matter what forum, to be honest. I think control might be a better word; at least it is in my forum. No one can say much if a members posts that something works for them but when that member tries to tell everyone they will be cured if they try this or that, he/she can expect some arguments. And if there is a link to a site that sells a product that he recommends, then, ..... You get the picture.
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

Check out the following site for more info on blood sugar:
www.phlaunt.com/diabetes/

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 5/1/2017 12:04 AM (GMT -6)   
Alice & Don - Thank you both for your kind words! I can start a new thread. I have a busy day with the kids today and may not be able to get to it until Tuesday. Congratulations to both of you on getting started with potato starch. "Week 1 down" for Don - awesome!

Lanie - Can you please confirm on the posting of scientific publications (name of journal, volume number, page number, and year of publication)? It sounds like that is okay from your comment above. Some members have an interest in reading the scientific publications. I think that it is a highly a commendable effort when people read, educate, and critically analyze for themselves. These are not surveys from institutions or companies. The journal "Nature Immunology", for example, is a peer-reviewed scientific publication and many authors from this journal over the last half century or so have been awarded Nobel Prizes in medicine and science.

I see Lanie that you are the diabetes moderator. It is great that you got involved with the RA page and my thread because many of these scientific publications are actually in reference to diabetes. A common thread is emerging between autoimmune disorders, T2D, and others.

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 5/1/2017 12:53 AM (GMT -6)   
Hi Don - With regard to getting a copy of that Nature Immunology paper, libraries in small towns and rural areas are unlikely to subscribe to this journal (completely understandable of course given their budgets and limited space). However, you could ask the librarian if he/she can order the article for you from a larger library in your state. A college or university library would most certainly subscribe to the journal.

It is best to present the actual paper to your rheumatologist. However, given that your appointment is this week and you are pressed for time, there is a summary in Medical Xpress that you could print out and present to the doctor.

https://medicalxpress.com/news/2017-03-medicinal-food-diet-counters-onset.html

I am curious to hear what your rheumatologists says. I hope that you share that with all of us.--Cheers, Scott

Lanie G
Forum Moderator


Date Joined Nov 2006
Total Posts : 5926
   Posted 5/1/2017 7:11 AM (GMT -6)   
Scott, links to papers or studies are ok but if you copy the paper onto your post then it's not ok. Just as in papers you write in college, you can quote a few sentences from the paper along with citing the author and origin but, again, if it's a page of material copied onto your post, then don't do that. There are several reasons for this but one of them is the use of space. It's best for you to summarize that content with citations. Doing all this follows forum rules.

Yes, some members like reading these papers while others do not and that's their choice of course.

I didn't see your original post and I don't have RA. I only responded to Alice's post and that's the only reason I've posted here. I don't know why your post was deleted but if the Admin did it, there must have been an infraction. But asking questions to make sure you're posting correctly is good!
Lanie

diabetes moderator
diabetes type 2 controlled by diet and exercise and
metformin
very low carb way of eating

Check out the following site for more info on blood sugar:
www.phlaunt.com/diabetes/

Scott007
Regular Member


Date Joined Apr 2017
Total Posts : 74
   Posted 5/1/2017 11:27 PM (GMT -6)   
To Don - Feel free to take on the mantle and start a thread on "resistant starch". Looks like my 2 children will be out sick from school for a couple more days at least. They are keeping me too busy to do much of anything.

My work is done here anyway. You and a few others here are now on the potato starch wagon and will impact others when you start reporting that you are improving after a few months. I wish all the best to you, Alice, and the rest that commented on the thread.

Cheers, Scott
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 12:34 AM (GMT -6)
There are a total of 2,885,883 posts in 316,652 threads.
View Active Threads


Who's Online
This forum has 157753 registered members. Please welcome our newest member, Gghjg0258.
266 Guest(s), 2 Registered Member(s) are currently online.  Details
07kr5, sebreg


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer