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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)

#51

Post by uberduber »

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.

I'm currently seeing a functional medicine MD recommended by my rheumatologist. Functional medicine doctors are really into the gut-immune side and my rheumatologist says he's seen some amazing results. I've been on an elimination diet for about 2 months without results, but in almost every paleo/aip/whole30/pfd cookbook I've been reading, the author's bio says something about recovering from autoimmune disease through diet.

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

#52

Post by 55555 »

researcher11 wrote: post #23
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/

This is next on my list if LDN doesn't work.

I have an autoimmune condition. I've tried: fecal transplant, LDN, helminthic therapy, AIP diet, and ofcourse vitamins/supplements. To varying degrees and with varying side effects, LDN, helminthic therapy, and AIP all work and seem to have the widest application. I would recommend trying AIP first for 14-28 days with vitamins/supplements (length depends on how quick your issues appear/disappear), and possibly adding LDN on top if need be.

LDN and Helminthic therapy both work but aren't very natural, so using them is a quality-of-life decision. The main problem with helminthic therapy is that it takes too long to start/stop.

I would only consider fecal transplant if your issues are predominately digestion related, and I would only bother if regular probiotics are life-changing for you and you want to push that as far as you can. Then again there isn't any good reason to NOT do it; just shame, etc., so go for it (this also applies to LDN and helminthic therapy though, so whatever).

I was very sick for about 8 years and for 3 of those years was pretty debilitated. This year I am finally in a good place. I don't currently eat a restricted diet anymore and I take very few supplements and I don't use any of the above anymore.

Supplements that people find helpful might include: glutamine, beta-glucans, turmeric, D3...

Anyone reading this with an autoimmune condition or who thinks they might can please email me. If you have questions or are struggling, please reach out.

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

#53

Post by uberduber »

researcher11 wrote: post #10

I have CFS/ME which I manage to about 60% normal. It's not enough and like many I'm doing enough to continue existing but nothing more. My next experiment is Low Dose Naltrexone (LDN) which sadly had to be bought illegally over the Internet so it's taking a long time to get. Has anyone here tried this? Did it work?

I have not tried it, but my functional medicine doctor has said she has had patients try it with a decent success rate.

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

#54

Post by 55555 »

researcher11 wrote: post #21
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…

What about LDN? I know I'm sounding like a broken record / shill here. I've not had the chance to try it as it's not available in my country. But it's available in the US as prescription as off label and compounding chemists can often refer you to a dr that will prescribe it. I'm even considering flying to the US to try it.

You can just order Naltrexone online and dissolve a pill in 50ml of water yourself.

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

#55

Post by 55555 »

researcher11 wrote: post #10

I have CFS/ME which I manage to about 60% normal. It's not enough and like many I'm doing enough to continue existing but nothing more. My next experiment is Low Dose Naltrexone (LDN) which sadly had to be bought illegally over the Internet so it's taking a long time to get. Has anyone here tried this? Did it work?

It worked very well for me but made me extremely (scarily) restless (mentally too) and screwed my sleep up beyond belief. I never tried dosing during the day, though. Feel free to email me.

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

#56

Post by pcrh »

cpncrunch wrote: post #36
pcrh wrote: post #31

Earlier quoted context omitted.

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.

In the absence of an underlying vulnerability, it would seem pretty unlikely that stress alone would be sufficient to cause CFS. Many people have very stressful lives (including being refugees, being under regular fire, etc) without getting CFS.

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

#57

Post by zzyx1yz »

I have an autoimmune disease; type 1.5 diabetes, formally called LADA (Latent Autoimmune Diabetes in Adults). I'm insulin dependent, like type 1, but the disease didn't manifest until my 40s, like type 2.

I suffer from moderately severe diabetic foot pain. My doctor prescribed some medication that provided marginal, at best, relief. About a year ago, I had a persistent fever. I took some aspirin to knock down the fever (I almost never took aspirin before that) and discovered that it provided significant relief from the foot pain. More recently, I had a bad cold, and I took some cold medicine that includes acetaminophen, something that I also almost never took before that. It seems to help even more than aspirin. I am wary of taking acetaminophen regularly, because of the warnings about liver damage, but it is something I am considering for those times when the foot pain is severe.

What I would recommend for people suffering from these kinds of problems is that they embrace the idea of Quantified Self. Start keeping a diary of everything. The things you eat, the things you do, and the symptoms you experience, in excruciating detail. Then start looking for patterns and correlations. Put the data into a spreadsheet, generate charts. Learn statistics, learn about correlations. Learn Bayesian Probability. You may be able to find the specific triggers that cause your symptoms, and maybe the things you can do (or avoid) to reduce your symptoms.

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

#58

Post by rdtek »

In case it's helpful to anyone who suffers from CFS I want to share a treatment which enabled me to recover 100%. It's called the Lightning Process:

http://lightningprocess.com

The theory is that CFS is caused by long term anxiety which sets off biochemicals such as adrenaline into your heart and bloodstream. These chemicals suppress your immune system and reduce your energy systems.

The treatment aims to switch off the source of the negative chemicals i.e. stop the anxiety. The methods are a mixture of self talk/coaching, posture changes, recognizing and confronting sources of anxiety and setting clear life goals to work towards a place of feeling less anxiety.

The LP was recommended to me by someone who also recovered from CFS. I'd say definitely give it a try if you are a sufferer of CFS, chronic anxiety or similar illness.

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

#59

Post by tbabb »

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…

Probably the most common skin condition in humans is https://en.m.wikipedia.org/wiki/Dermatophytosis , aka ringworm, aka athelete's foot. I'm guessing by this point you've eliminated that as a possibility by treating with over the counter topical antifungals?

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

#60

Post by researcher11 »

55555 wrote: post #54
researcher11 wrote: post #21

Earlier quoted context omitted.

What about LDN? I know I'm sounding like a broken record / shill here. I've not had the chance to try it as it's not available in my country. But it's available in the US as prescription as off label and compounding chemists can often refer you to a dr that will prescribe it. I'm even considering flying to the US to try it.

You can just order Naltrexone online and dissolve a pill in 50ml of water yourself.

That's what I'm doing; it's just taking time to get here. ETA one more weeks.
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