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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)

#41
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?

Probably avoiding inflammation help to avoid triggering the immune system.

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

#42
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…

>2 years later I grew giant, hard skin patches on my knees. My fingernails started detaching. I could live with it, although as a gym rat I needed to make sure my knees were wrapped since doing anything on my knees ripped the skin open.

Shouldn't you at that point, or at least now, go to the doctor, or several doctors, again?

It's not the "3 months for the appointment" that concern me as much as the 2 years with increased symptoms.

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

#43

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.

I had never heard about it, but what I just read sounds great. It seems to work at a 1:100k dilution, so maybe you might get it under the guise of a D5 homeopathic remedy?

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

#44
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…

Eat an Autoimmune Paleo diet for a month. It works very well for me and a lot of other people.

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

#45
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?

Yes, keto seems to work well for some people with certain issues, and AIP (autoimmune paleo) is the leading the diet for autoimmune conditions. It works extremely well for many, many people.

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

#46
I am going through the same right now.

2 years ago I was running my startup Tennis Buddy, and everything was fine when I got pins and needles pain one morning all over my body and blurred vision.

I have had this a lot of times before in my life (around 20 times), and it always went away with rest within 1 week with no problems. However, this time I was in the middle of finishing a contract and didn't take rest. A couple of days later, I reduced work lod to become better, however it seems like it was too late, since the pins and needles pain just didn't go away anymore.

After a month of still not getting much better, I went to see doctors, however they could not find anything. There was the assumption that it was psychological, however, I just don't have any symptoms of depression.

During that time, I noticed that only very little exercise (running for 1 min) increases the pins and needle pain for several days or even weeks. Then for the next year, I tried to not exert myself at all and stopped all work to get better. This did reduce the symptoms, however, just small exertion triggers the symptoms again. After this happening a couple of times, I also got strong muscle twitches (several thousand per minute sometimes) all over my body.

There was also the assumption that I had CFS, however, it does not fit, since I just have no fatigue at all, I only have constant nerve pain/pins and needles, blurred vision and muscle twitches.

I also moved back to my parents and had to leave my friends, so it's getting really difficult for me to stay positive. Please let me know any advice that you might have.

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

#47
post #42
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…

> 2 years later I grew giant, hard skin patches on my knees. My fingernails started detaching. I could live with it, although as a gym rat I needed to make sure my knees were wrapped since doing anything on my knees ripped the skin open. Shouldn't you at that point, or at least now, go to the doctor, or several doctors, again? It's not the "3 months for the appointment" that concern me as much as the 2 years with inc…

I skipped over it but I did go back to a GP. Got more prescriptions for hydrocortisone+dovonex, and that if it should get significantly worse, to line up a referral to a derm. After that, I had a relatively stable 5 years where my fingernails cycled and my knees and scalp just persisted at the same level. I hesitated going any more since he didn't seem to care all that much and again, I could live with it. It was workable.

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

#48
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…

Sounds like you've tried the topical approach. Doctors can also prescribe systemic immunosuppressant solutions as well, though. Often orally. You may be ready for that step. Even then, there's another step past that with drugs that can only be injected, like biologics (often something like an antibody that shuts down the human inflammation system). There are big trade offs in expense, delayed action, side effects, etc. in all these, so don't feel bad about starting out with topical. It was worth a try, as they say.

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

#49

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?

Have you heard of the lightning process?

http://lightningprocess.com

I had CFS/ME and was referred by a friend to a LP practitioner, after following the process and making some life adjustments I made a full recovery.

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

#50
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…

My doctor in NYC was the first to bring to my attention the emerging link between autoimmune disease and microorganisms. After 20 years of managing with medicine and hitting rock bottom 2 years ago, he encouraged me to consider drastically altering my diet.

I started eating autoimmune-paleo (like the author) and anti-fungal. The improvement has been dramatic and life changing. I'm now off all medication. I still have a bad day every now and then, and I may need to revisit the meds at some point down the road. But I'll tell ya, after years of feeling hopeless, it's amazing to take control and regain some sense of normalcy.

If you haven't examined your diet, I would strongly encourage you to do so.

Please feel free to reach out to me using the email address in my profile. That goes for anyone here.

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