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

newyorker.com

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

#11

Post by cpncrunch »

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill".

CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead stressful lives (being an editor of New Yorker is definitely stressful). The things that worked for her -- alternative therapies, living a healthier and less stressful life -- typically help with CFS.

From having CFS myself and recovering, it seems to be caused by a state of persistent burnout caused by chronic stress. It's usually multiple stressors that build up and cause the brain to shut down the energy supply. It's not caused by a moral failing or laziness. I see it as similar to the central governor that limits athletic performance. You have no control over it, other than to change your lifestyle and hope that your brain recognises that there is no longer any chronic negative stress.

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

#12

Post by salimmadjd »

My wife is going through a version of this right now. We are scheduled to see a specialist at Stanford in a few weeks.

Just last March we hiked to Patagonia and camped there. We hiked for about 8km to the camp place. She even carried more weight on her back than I did. But this last December when we went snowshoeing in the Canadian Rockies, she had to stop every few minutes from fatigue. I helped carried half of her stuff for her. Not having her, the old ways, has been rather sad. She has an amazing attitude about it, so it's very helpful. But I'm constantly praying and hoping for her to get better.

I have read so many things online and have come out rather frustrated how limiting the Medical science is around treating or fixing autoimmune disease.

The only thing I've found so far is this:

I call it the, "nuclear option". They use chemotherapy to kill your immune system and use stem cells to rebuild it from scratch. There is apparently a hospital in Mexico that does that for less than $100k with some success but no true scientific rigor yet [1]

Alternatively, there is some research suggests that fasting for 48-72 hours on regular bases has shown to regenerate a new immune system. However, unclear if the new immune system will just attack the antibodies again or it would be blinded to that history. I wish they would do more research on that front [2]

I also have been thinking about other ways that technology might help sufferers better monitor themselves and ultimately use some data analysis to better understand if there is specific diet changes that can help keep the disease in control.

If you know of other things please comment.

[1] http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-ce...

[2] https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...

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

#13

Post by Karlozkiller »

glup wrote: post #9

I want to use HN to do a quick informal survey on this topic: please state # of your male friends with similar conditions, # female friends with similar conditions, country or state, and whether you live in an urban vs. rural area (yes I know that this is a crappy methodology and likely a very biased sample)

Do you refer to what is spoken about in the article, or auto-immune disease as per se?

I have heard medical statistics stating that 9 out of 10 with auto-immune disease is female. Which to me would imply that something gender-specific, like genetics or the likes, is hugely responsible.

I get the feeling what you're getting at is that women are supposed to be weaker and get easily confused and it's all in their head though (apologies if that is in no way what you mean.)

But I can confirm that I am one of the lucky 1/10th of the overall population who have a diagnosed auto-immune disease being male.

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

#14

Post by researcher11 »

cpncrunch wrote: post #11

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill". CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead…

AFAIK the latest on CFS is that it is autoimmune. Also thyroid conditions often goes into remission so negative tests don't necessarily mean there is was nothing there. And yes both can be triggered by stress (as in my case of fixed Graves and current CFS) but I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve. Effectively retiring wasnt sufficient for me. I think there is a multifaceted brain / microbiota axis but I'm still researching and experimenting. LDN will be my next experiment.

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

#15

Post by manmal »

salimmadjd wrote: post #12

My wife is going through a version of this right now. We are scheduled to see a specialist at Stanford in a few weeks. Just last March we hiked to Patagonia and camped there. We hiked for about 8km to the camp place. She even carried more weight on her back than I did. But this last December when we went snowshoeing in the Canadian Rockies, she had to stop every few minutes from fatigue. I helped carried half of her…

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/

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

#16

Post by pcrh »

cpncrunch wrote: post #11

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill". CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead…

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.

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

#17

Post by reasonattlm »

Near complete ablation of all immune cells in circulation is proving to be pretty effective as a way to put autoimmunity into long-lasting remission. It can be done with high dose immunosuppressants at the cost of much the same symptoms as cancer chemotherapy - these are harsh drugs - plus a few day period of vulnerability to infection while the immune system rebuilds. But the cures are demonstrated, for type 1 diabetes and multiple sclerosis over the past five to ten years.

All automimmunities should be amenable to cure this way, as the malfunctioning is based on bad data that is stored in the immune cells, nowhere else. Newly created immune cells do not have this malware; they acquire it from the existing population. (It would be interesting and novel to find an autoimmunity where this is not the case).

Unfortunately, the cost-benefit equation for this current form of ablation doesn't work for things that don't kill patients. No-one undergoes chemotherapy for a condition that merely shortens your life expectancy by a decade and makes you miserable, as chemotherapy has a significant risk of death and shortens your life expectancy by a decade.

So what is needed are better forms of ablation, those with no side-effects. The programmable gene therapy cell killer produced by Oisin Biotechnologies is one possible class of approach, as are other targeted cell killing approaches such as that demonstrated last year to selectively kill blood stem cells.

Then an application of cell therapies is needed, creating immune cells from a patient tissue sample, and infusing them in bulk immediately following ablation, to remove the period of vulnerability.

These are very feasible targets. A company could be founded today, right now, to do this, and have something ready for human trials by 2019. Sadly, here as elsewhere in medicine, there seems to be no hurry to change the world.

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

#18

Post by dmix »

Karlozkiller wrote: post #13
glup wrote: post #9

I want to use HN to do a quick informal survey on this topic: please state # of your male friends with similar conditions, # female friends with similar conditions, country or state, and whether you live in an urban vs. rural area (yes I know that this is a crappy methodology and likely a very biased sample)

Do you refer to what is spoken about in the article, or auto-immune disease as per se? I have heard medical statistics stating that 9 out of 10 with auto-immune disease is female. Which to me would imply that something gender-specific, like genetics or the likes, is hugely responsible. I get the feeling what you're getting at is that women are supposed to be weaker and get easily confused and it's all in their head t…

I have Ulcerative Colitis which is an autoimmune disease and my doctor who is a famous IBD researcher has said that Chrons/Colitis affects women about 90% more often than men. In fact on my dads side there are 3 females with it (both 2x Chrons and 1x Colitis) and I'm the only male so far in the family tree.

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

#19

Post by fnord123 »

manmal wrote: post #15
salimmadjd wrote: post #12

My wife is going through a version of this right now. We are scheduled to see a specialist at Stanford in a few weeks. Just last March we hiked to Patagonia and camped there. We hiked for about 8km to the camp place. She even carried more weight on her back than I did. But this last December when we went snowshoeing in the Canadian Rockies, she had to stop every few minutes from fatigue. I helped carried half of her…

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/

))(( truly is the miracle cure.

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

#20

Post by cpncrunch »

researcher11 wrote: post #14
cpncrunch wrote: post #11

To best honest it sounds more like CFS than autoimmunity. The article says that it turned out not to be thyroid, and the autoimmune diagnosis was just presumed. Generally when you have those symptoms it is termed CFS, but people don't like CFS because they incorrectly think it means "all in your head" or "you're not really ill". CFS tends to be triggered by stress (as it was in this case), and sufferers tend to lead…

AFAIK the latest on CFS is that it is autoimmune. Also thyroid conditions often goes into remission so negative tests don't necessarily mean there is was nothing there. And yes both can be triggered by stress (as in my case of fixed Graves and current CFS) but I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve. Effectively retiring wasnt sufficient for me. I think there is a mu…

>AFAIK the latest on CFS is that it is autoimmune

No, that's not true at all. Lots of research going on now, but nothing found yet. There has actually been research for years showing autoimmune dysfunction in CFS, but there's no evidence it is causal.

Stress has been shown to trigger autoimmunity, and is known to cause the immune abnormalities seen in CFS. Basically stress causes a shift to Th1-like immunity, which makes it more likely the body will attack healthy cells, as well as impaired NK function.

>I don't think lifestyle and lower stress is necessarily sufficient for everyone to improve

Anecdotal, but I have completely recovered 100% (zero symptoms for 17 years). I've also talked to lots of other people who have recovered. If you're still experiencing CFS, I would say reducing stress (including quitting a stressful job if you're in one), and dealing with any emotional stressors, is the main thing to concentrate on. After that, increase pleasurable physical and mental activities. There's no current drugs or supplements that will help at all (other than perhaps reducing some symptoms).

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