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I had an autoimmune disease, then the disease had me (2013)

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Re: I had an autoimmune disease, then the disease had me (2013)

#31

Post by pcrh »

cpncrunch wrote: post #25
pcrh wrote: post #16

Earlier quoted context omitted.

Chronic fatigue can be caused by undiagnosed organic illnesses. Personal anecdote: I had CFS for several years, and when the diagnosis (an easily treatable genetic condition) was eventually made, and treatment taken, I was better within a few months.

Yes, but by definition it isn't CFS if that is the case, as CFS is a diagnosis of exclusion at present. It's certainly possible that CFS is caused by some as-yet-unidentified organic illness. However the science doesn't seem to point in that direction (as the stress system seems to be centrally implicated), and it also doesn't fit with the experiences of patients like myself who have fully recovered.

I may be splitting hairs, but "chronic fatigue" is a symptom. When its aetiology is unknown it is often classified as CFS. I would not be surprised to find that as medicine progresses many cases of CFS become re-classified.

Certainly, stress would exacerbate any symptoms of fatigue.

Re: I had an autoimmune disease, then the disease had me (2013)

#32

Post by __d__ »

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

Re: I had an autoimmune disease, then the disease had me (2013)

#33

Post by gwern »

> The truth is, I had no idea what autoimmune disease really was. For years, I’d known that two of my mother’s sisters had rheumatoid arthritis and ulcerative colitis (and my father’s youngest sister had recently learned she had Hashimoto’s). But I didn’t understand that these diseases might somehow be connected. At Christmas, I’d had lunch with three of my mother’s sisters—humorous, unself-pitying Irish-American women in their fifties—at my grandmother’s condo on the Jersey Shore, and they told me that two of my cousins had been feeling inexplicably debilitated. “None of the doctors can figure out what it is,” one said, “but I think it’s thyroid-related.” Another aunt told us that, along with the rheumatoid arthritis she’d had for years, she, too, had recently been given a diagnosis of Hashimoto’s, and both were autoimmune in nature. The third aunt had ulcerative colitis, and told me that a cousin had just been given that diagnosis, too. “They’re all connected,” one of them explained.

They certainly are. It's an interesting area of genetic correlations, the autoimmune cluster: https://en.wikipedia.org/wiki/Genetic_correlation#Disease Also notable for relatively large genetic effects from the large and difficult MHC gene.

Re: I had an autoimmune disease, then the disease had me (2013)

#34

Post by pybank »

I have been through the same. I am 33 now and I was diagnosed with Hashimoto when I was 28. I am still managing the whole situation as best as I can. Today I am physically more fit that I even was in my entire life. Although I have many sessions of unexplained memory loss and brain fog.

The funny thing is that if you have one autoimmune disease, it is highly likely that sooner or later you will also encounter another one. I was diagnosed with three. Including one affecting my eyes pretty badly.

The way I am managing it all is by 1. making sure my adrenal does not deplete(went through a super adrenal crash last year) 2. good dental hygiene(it does help massively) 3. avoid sugar, refined carbs, alcohol. 4. Probiotic natural Yogurt and apple cider vinegar seems to keep my system happy, milk makes things worse. 5. B-complex and Vitamin - D on a regular basis.

point 3 and 4 are to ensure that my gut is maintained well.

The important thing is to make sure that you try to take good care of your adrenal gland and pituitary , because they tends to overwork to compensate the malfunctioning organ that is under attack at the time.

The longer I continue my unrefined diet, good sleep cycle and avoid stress, the more my body heals.

I used to be quite a sharp minded computer scientist, now that sharpness comes and goes, other times there is fog, which is not very nice :-) But I have hope that eventually I will be better, I am already much better than last few years :-)

Re: I had an autoimmune disease, then the disease had me (2013)

#35

Post by pybank »

__d__ wrote: post #32

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

any diet which keeps your gut healthy will work. Lots of fruits and vegetables and seeds and probiotic works well. It works for me.

Re: I had an autoimmune disease, then the disease had me (2013)

#36

Post by cpncrunch »

pcrh wrote: post #31
cpncrunch wrote: post #25

Earlier quoted context omitted.

Yes, but by definition it isn't CFS if that is the case, as CFS is a diagnosis of exclusion at present. It's certainly possible that CFS is caused by some as-yet-unidentified organic illness. However the science doesn't seem to point in that direction (as the stress system seems to be centrally implicated), and it also doesn't fit with the experiences of patients like myself who have fully recovered.

I may be splitting hairs, but "chronic fatigue" is a symptom. When its aetiology is unknown it is often classified as CFS. I would not be surprised to find that as medicine progresses many cases of CFS become re-classified. Certainly, stress would exacerbate any symptoms of fatigue.

Yes, that's pretty much what I said. With the addition that if you look at the overall evidence it does seem to be pointing towards stress as the cause.

Re: I had an autoimmune disease, then the disease had me (2013)

#37

Post by manmal »

salimmadjd wrote: post #22
manmal wrote: post #15

Earlier quoted context omitted.

Before you go nuclear, have you considered a less invasive option, namely fecal transplants? There's not much research yet, but it looks promising for a lot of diseases, including chronic fatigue: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/

I'm a big believer in the gut-immune system connection. I've observed that with my own boy. However, there is no real good science there, yet. This is an area that could use some grants. While every philanthropist wants to cure cancer, it seems like there is a lot of good science out there in the need of investment.

Problem is, except from some prebiotic supplements and cultured micro organisms, there is not much money to be had, and therefore will not be funded broadly.

Re: I had an autoimmune disease, then the disease had me (2013)

#38

Post by ww520 »

raydev wrote: post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Some good news. There are dozens of new drug approved by FDA addressing the auto immune illness. The problem is they are expensive, thousands of dollars per shot for every couple weeks. Hopefully the competition will drive the cost down.

Re: I had an autoimmune disease, then the disease had me (2013)

#39

Post by uberduber »

nostromon wrote: post #30
raydev wrote: post #26

It started when I was 25. I found the area above my ears, just at the hairline, was always itchy and flaky. Within a few months my scrotum turned red and itchy and flaky. Since there had never been anything wrong with me other than than a flu or two, I immediately went to the doctor. The diagnosis was "probably psoriasis" and I was prescribed hydrocortisone and Dovonex. 2 years later I grew giant, hard skin patches o…

Going through something very similar. Started 6 years ago when my lips became inflamed out of nowhere. Lasted a confusing week and then was gone like it was never there. About a year later, it came back again a little bit worse and with some discharge. This pattern continued, sometimes only a few months between outbreaks, and sometimes over a year. New symptoms started coming with each outbreak. At this point I can f…

I have an autoimmune disease and way too many friends with them as well, so I'm very familiar with the seeing countless doctors. Most people ended up getting a proper diagnosis at either a rheumatologist or neurologist.

Re: I had an autoimmune disease, then the disease had me (2013)

#40

Post by rsync »

__d__ wrote: post #32

Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared. I've seen people who go on a low fat vegan diet and it cleared up. There's seems to be a handful of diets which give some people success so I'm not advocating one diet over the other. Just that there may be a way to manage it and was wondering if anyone has had success?

"Has anyone managed autoimmunity with food? I've seen several people who went on a keto diet and psoriasis disappeared."

I would think the first step would be elimination of food entirely, via fasting - perhaps for 16 hours at first, then 24 hours, as a very simple, first order experiment.

In terms of a workable troubleshooting methodology, that would be the most efficient first step. Then you can add things back in bit by bit.

I think there's a deep human tendency to wish to solve health problems with the addition of food. Depending on the decade it's superfoods or antioxidants or purple veggies or beef broth or whatever. This is probably a delusion.

I think you can indeed affect your health with food - but only by subtraction. So save yourself years of "is it gluten or isn't it" and just see what zero calories does for you right now.

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