mindbodygreen.com/0-13514/how-conventional-medicine-got-autoimmune-diseases-all-wrong.html
While this helps, it is no cure. Yes, western medicine is not suporting your immune system. Yes they are not looking at the AI diseases as a group. Management is still our best option. Currently we need to use everything we have available to manage our individual collection of AI diseases.
Good article.
I also agree with Joe - we need to use everything we have available to manage our "collection" of AI's.
This was my point... and I believe the point of the article:
" Under our current medical system, autoimmune diseases are not recognized as diseases of the immune system as a whole. Instead they are seen as diseases of particular organs. Unfortunately, that means that there isn't a unified branch in conventional medicine to treat autoimmune conditions. With cancer for example, we have cancer specialists called oncologists who treat many different types of cancers no matter which organ system they involve. Yes, there are some subspecialties within oncology, but they typically still fall under one main oncology umbrella.
If, on the other hand, you are suffering from an autoimmune disease, you will see a specialist who focuses on the organ system that is being affected: a rheumatologist for rheumatoid arthritis; an endocrinologist for Hashimoto?s and diabetes, a gastroenterologist for celiac, ulcerative colitis and Crohn's; a dermatologist for psoriasis; and so on. If you have multiple autoimmune conditions, as many people do, you will see several different specialists."
I totally agree, jazzlover. I was in effect saying the same thing earlier in conversation. It makes no sense to me that there is no main umbrella for AI's then the affected organs being spokes of the same umbrella.
It makes no sense to me why AI's are so segregated. No sense at all. Oh, and I notice that between the different specialties, even baseline awareness of "other" AI's is limited at best.
Somewhere recently I read that there are about 80 known AI's. I started doing the math of the specialists I have NOW and thought to myself - oh please let SJS be teh LAST one I pick up. Already "rx's, otc's, supplements, ins premiums and co-pays" poor as it is.
Agreed jazzlover!!!
I'm especially in agreement w/the intestinal permeability/leaky gut part. I have my masters in science and I'd bet a big pile of money this will be the most revealing in the coming years. Wish we could speed up research!
PS and don't get me started on how AI diseaes is not taken as seriously as other diseases by friends/fam. :-[
DEFINITELY true about the leaky gut... I KNOW that is 90% of my problem.
I'm 99% sure that leaky gut caused my SS that had been flying under the radar for years to go totally crazy. I had started developing food allergies left and right and had several other leaky gut symptoms when my SS became really pronounced. I don't think diet is the key for me though. I tried cutting out gluten as well as nightshades for a long time and it didn't do anything for me, I noticed no improvement in symptoms at all. I do think it's downright odd that autoimmune diseases aren't looked at as being all in the same basket. It's the same thing happening regardless of what area of the body is being affected...
Eta typo
Where do I find this article? Would love to read.
Quote from: cupcake on April 28, 2014, 05:49:23 AM
Where do I find this article? Would love to read.
copy and paste to your browser in another tab:
mindbodygreen.com/0-13514/how-conventional-medicine-got-autoimmune-diseases-all-wrong.html
Yes, that is the link... just add www. to it.
I looked at the article and then the author.
Her medical approach is integrated, holistic, MD working with nutritionist in her practice in Austin, TX.
She studied for a bit with Dr. Weil, and it was not a fit for her.. then studied under Dr. Mark Hyman. ( I had considered seeing him more than a decade ago. Instead read one of his first books.) Dr. Hyman as with Dr. Myers ventured out of mainstream western medicine upon the experience of their own personal medical issues.
Her approach and that of Hyman, as with Hippocrates, is "All Disease Begins in the Gut"
There are many Integrated Medicine Drs. to varying degrees.
But, what tripped the gut reaction.. we were not born with a "leaky gut?" (Which some reseachers view as more myth than substance).
So would folks, as she discusses presenting a vast array of symptoms... seek a gastro?
What of external trigger? in the presence of genetic predisposition?
The issue of a viral trigger is not addressed?
Looking further I read at her clinic in Austin (She was licensed in 2008, studied under Hyman in 2009)
- 80 min initial visit @ $1,200, initial, Physician – 50 min $425 Physician – 25 min $212.50, (phone consultations available)
- nutritionist consult @ $ 225
- her brand of probiotic $81/120 (one month supply?), shampoos, lotions, ebooks, etc.
Insurance.. does not say, except no Medicaid.
Looks as though she has learned a good internet business model from mentors.
In the meantime.. always good for people to take back control of aspects of their health, foods, exercise, stress, sleep hygiene, etc.
As we know when we are in the pits of feeling unwell, not eating, drinking, exercising, states of stress and sleep disturbance are a yo-yo. 3 steps forward .. 2 steps back.. striving for balance. And for those who are alone it is even worse without support.
What in the world is a Leaky Gut? ???
'What in the world is a 'leaky gut'?'
Various chronic inflammatory conditions, pathogens, and intolerances can erode the protective lining of the gut allowing direct contact of gut contents with the bloodstream. Studies have indicated in the process of fighting this invasion the immune system can become confused and create antibodies against bodily tissues.
Crossing the blood/brain barrier has long been known to be associated with disease processes.
Research on the blood/gut barrier is finally getting more attention.
People with AI diseases tend to have a high prevalence of leaky gut and vice versa.
The same appears to be true of those with diseases such as MS and issues with the blood/brain barrier.
Some gut contents such as certain types of wheat seem to cause the creation of antibodies against bodily tissue more easily than others, especially in people with chronic intolerances.
There's a lot of attention on celiac (wheat intolerance) these days but I'd be surprised if lactose and other chronic intolerances don't cause similar blood/gut barrier originated AI issues.
Quote from: littleone on April 27, 2014, 07:38:35 PM
Agreed jazzlover!!!
I'm especially in agreement w/the intestinal permeability/leaky gut part. I have my masters in science and I'd bet a big pile of money this will be the most revealing in the coming years. Wish we could speed up research!
PS and don't get me started on how AI diseaes is not taken as seriously as other diseases by friends/fam. :-[
I know for sure it all started with my mysterious GERD back in 2008 as a first sign of what was coming, so I know the gut is in the very heart of it all. So, until I wait for doctors to even see me, I will go vegetarian and then vegan and try to repair the damage partly. I know it took years to get here and some things might be gone for ever, I just do not want to loose more...
Nellie
QuoteAnd for those who are alone it is even worse without support.
Yep, that is me, and yes it is much worse without support. But then it's all relative I suppose.
To topic: I believe that as so many of us do also have gut or gastro related issues, that there has to be a correlation. I've been suffering with GERD since mid 1990's. MS suspected late 1990's. Hashi's 2008 and then somewhere in between the two fibromyalgia, MCS, etc
Sjogrens being the most recent to announce itself.
I have given much thought into this whole topic as to when "diet" changed for me, when "disease" unrelated to MVA started for me, and I can say for certain in my own personal experience that diet is reasonably a factor for me. Has to be. I have no immediate relatives with AI's. One aunt with RA, but that isn't immediate family (and when I was a wee thing she was up there in her 70's). Another aunt with vitiligo, but she is a half-aunt (whole person but half aunt).
I realize some may disagree, but I reference my own awareness of when I got away from healthier eating, onset of GERD and such, so I think in my personal situation - highly probably started with my gut.
While I am supportive of docs seeing us as a whole, having one cancer type specialist for AI's won't necessarily solve the issue. A friend at church has kidney cancer and has learned that not all oncologists are as versed in it as others. In her case a specialist may be her best bet for survival.
You are correct that medicine has become very specialized. I consider it a blessing and a curse. A curse because one sees so many dos some of whom only see the issue that fits their perspective. The blessing, if I have a specific ailment or organ that needs fixing, I can get it fixed as I did with my gut.
However, getting my gut in order didn't make my SJS go away as it's a systemic disease that is happening at a cellular level. The gut issues may have triggered it, and fixing them can mitigate symptoms, but it would be unexpected for it to go away. The again, miracles happen and there's still a lot that no one knows about the body in general and SjS in particular.
QuoteHowever, getting my gut in order didn't make my SJS go away as it's a systemic disease that is happening at a cellular level. The gut issues may have triggered it, and fixing them can mitigate symptoms, but it would be unexpected for it to go away.
I agree. I believe that once the damage has been done at the cellular level it is not reversible - considering we are talking about the immune system in particular regarding AI's.
Once the antibodies are there, they don't "go away". However, on the premise that AI's begin in the gut, continuing to do the same old things the same old way can only keep stirring the AI pot so to speak. Keeps those autoantibodies stirred up.
I came across a very interesting infographic (wish I knew what I did with it) that was very very interesting. Celiac, for example, is only ONE of several conditions (AI's) that begin in the gut ( a surprisingly small percentage at that) and that the more prevelent gut related diseases don't even have gut related symptoms. And the common theme in the center of the infographic was gluten smack dab in the center.
One of the foremost experts on leaky gut is Dr Fassano from MGH in Boston. From my observation, I can tell you that the researchers are paying big time attention to the human biome (ie a persons gut flora)which changes (after a GI infection, for ex) unlike the genome which is fixed.
He is working on a commercially available test for leaky gut (zonulin) that will likely elucidate a lot of his thinking. He does not believe leaky gut is solely responsible for AI but that a leaky gut in concert w a genetic predisposition and environmental trigger are the three underpinnings of the AI epidemic.
Here is a video. At around 6 mins he starts to synthesize his thoughts on leaky gut and the poss link to AI disease (including ms, neuropathy, diabetes). And a couple of other links.
functionalmedicine.org/conference.aspx?id=2675&cid=0§ion=t303
http://www.ncbi.nlm.nih.gov/pubmed/21248165
http://www.direct-ms.org/sites/default/files/Fasano%20intestinal%20barrier%20autoimmunity.pdf
I'm a big believer that this is going to flip the AI paradigm on its head (on the cellular level) but if nothing else it is food for thought!
And for anyone who suspects they have intestinal permeability I'd check out the FODMAP diet. It is well studied out of Australia: med.monash.edu/cecs/gastro/fodmap/low-high.html
THANKS, littleone! Funny that my brother used to call me that! :) Sweet name.
I totally believe that our guts can be healed. Our bodies can regenerate. Takes work, but it is possible and something to work toward.
:) Anytime! I think this could be promising. Just wish we could understand it yesterday already ;)
Quote from: jazzlover on April 28, 2014, 09:54:45 PM
THANKS, littleone! Funny that my brother used to call me that! :) Sweet name.
I totally believe that our guts can be healed. Our bodies can regenerate. Takes work, but it is possible and something to work toward.
I really hope we can heal the gut. I will start a draconian program in mid May in the hopes to stop/delay, or even reverse some of te damage.
BTW, how do you manage your IC? I had that helped by Zyrtec and supplement but since the SICCA I had to stop it all....
Nellie
machenza... Have you tried Vistaril or Atarax for the IC??
Keep us posted on what you do for the gut!
I can attest that it is possible to heal your gut. I was very ill with gut issues for several years, including emergency room visits for norovirus and some undetermined cause for stomach issues then found I had an H Pylori infection.
The infection was treated with antibiotics, which even the holist practitioner I was seeing at the time agreed I needed to take. I then eliminated
gluten (no more gas, bloating or constipation),
legumes (used to be able to eat them, now they give me Rosacea),
dairy (also a Rosacea trigger), and
simple sugars except small amounts of candy (my sugar was 110 when this all started, now even having eaten before blood work it's in the 80s or 90s),
For a while I avoided corn, but in small qualities it's not an issue. Doing these things has been a big help, but has not, unfortunately, stopped the progression of dryness or increasing fatigue.
That said, I'm far more functional than when this all started and am able to work full time along with engaging on other life activities such as clubs and church. When I crash I crash then get back on the horse, just try to ride more slowly and on less rocky roads.
Quote from: SjoGirl on April 29, 2014, 03:44:29 PM
I can attest that it is possible to heal your gut. I was very ill with gut issues for several years, including emergency room visits for norovirus and some undetermined cause for stomach issues then found I had an H Pylori infection.
Having IBS which was incidentally managed with neuro meds.. Gastro issues are something that lurks in my mind. I do carry Dicyclomine with me.
It is great that the H Pylori was treated. A breath test can detect it.
Dr. Timothy Cragin Wang, is an expert on H. pylori and its role in gastric cancer.
"Since the 1860s, when an influential anatomist traced
cancers back to epithelial cells, scientists had thought gastric cancer arose
from the epithelial cells that line the stomach. By the 1990s, scientists knew
that H. pylori instigated most tumors but did not understand how.
Dr. Wang thought that bone marrow-derived stem cells recruited to the
site of H. pylori infection to clear the cells could play a role. But what
he found in a mouse model of gastric cancer was completely unexpected:
The bone marrow cells turned into tumors."
"Dr. Wang says. "
Many of the 'black box' aspects of cancer become
easier to explain"
* I like this term.."black boxes", all the unknowns.
http://www.cumc.columbia.edu/psjournal/sites/cumc.columbia.edu.psjournal/files/columbia_medicine_spring_2012.pdf (page 6) He uses a gardening metaphore but, for some reason I cannot copy and paste for you.. it is in the right column.
Of interest?
PRIMARY SJöGREN'S SYNDROME WITH PROTEIN-LOSING GASTROENTEROPATHY: REPORT OF TWO CASES
"Excessive intestinal protein loss might be due to increased permeability of the mucosa under the effects of inflammatory prostaglandins and cytokines in Sjögren's syndrome."
file:///C:/Users/barbara/Downloads/9c9605198d17be692f.pdf
Dx'd with IBS for lack of a better understanding after test results - normal, I often wonder if as in the example mentioned in the last study, despite best efforts, we actually suffer malnutrition via, mal-absorption?
Does SJS affect the intestinal glands? I would think so. http://en.wikipedia.org/wiki/Intestinal_gland
Quote from: jazzlover on April 29, 2014, 03:22:40 PM
machenza... Have you tried Vistaril or Atarax for the IC??
Keep us posted on what you do for the gut!
I have tried Atarax and worked great at 50 mg for the night, however I am so dry now even with Salagen so I am affraid to even try again. I will look up the Vistaril.
Thanks,
Nellie
I was diagnosed with Small Intestine Bacterial Overgrowth via colonoscopy in January. I was put on the diet in this book. Gastro said to try it for 3 to 4 months to see if I can clear it up.
SIBO can also be diagnosed by taking the blow test for it.
I just ordered the book yesterday.
Breaking the Vicious Cycle: Intestinal Health Through Diet
by Elaine Gloria Gottschall
Breaking the Vicious Cycle was written by Elaine Gottschall, biochemist and cell biologist. It provides an alternative way to help combat digestive disorders using dietary changes; and also a practical book that addresses the problems of intestinal conditions such as: Crohn's Disease, Ulcerative Colitis, Diverticulitis, Celiac Disease as well as less severe complaints like: indigestion, "nervous stomach", chronic diarrhea & spastic colon.
This has to be my favorite book of the year. I may even read it again.
The Last Best Cure: My Quest to Awaken the Healing Parts of My Brain and Get Back My Body, My Joy, and My Life
by Donna Jackson Nakazawa
One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That?s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. As a science journalist, she was curious to know what mind-body strategies might help her. As a wife and mother she was determined to get her life back.
Over the course of one year, Nakazawa researches and tests a variety of therapies including meditation, yoga, and acupuncture to find out what works. But the discovery of a little-known branch of research into Adverse Childhood Experiences causes her to have an epiphany about her illness that not only stuns her?it turns her life around.
Perfect for readers of Gretchen Rubin's The Happiness Project, Nakazawa shares her unexpected discoveries, amazing improvements, and shows readers how they too can find their own last best cure.
Machenza... Vistaril is hydroxyzine pamoate