6 ms·

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 an

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-cell-cure-for-multiple-sclerosis-5wd3hwfsh http://www.thetimes.co.uk/article/bbc-reporter-hails-stem-ce... [2] https://news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/ https://news.usc.edu/63669/fasting-triggers-stem-cell-regene...

manmal 10y ago
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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/
- fnord123 10y ago
  ))<>(( truly is the miracle cure.
- salimmadjd 10y ago
  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.
  - manmal 10y ago
    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.
  - uberduber 10y ago
    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.
    - manmal 10y ago
      One thing that helped me (though I'm not yet finished recovering from a period of high stress) was to do the things that strengthen the gut barrier. As long as the barrier is permeable for large particles, you will have foreign objects floating around and your immune system attacking them. Here is a very long article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.66990 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.... Specifically, strains like Bifidus Longum are beneficial, and of course reducing stress (negative outlook etc) is. The article particularly stresses efficacy of 5-HTP, but I've not tried that yet. IMO very overlooked one: weak stomach acid. My symptoms get WAY better if I consistently use vinegar and supplement zinc.
researcher11 10y ago
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.
- manmal 10y ago
  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?
- 55555 10y ago
  You can just order Naltrexone online and dissolve a pill in 50ml of water yourself.
  - researcher11 10y ago
    That's what I'm doing; it's just taking time to get here. ETA one more weeks.
benlambert 10y ago
48-72 hours is not long enough to regenerate your immune system. Valter Longo has recommended at least 4-5 days to treat auto-immune disorders [1]. I've done 5 day fasts. For something serious I would try 7. [1] http://joshmitteldorf.scienceblog.com/2014/06/12/the-three-day-fast-day-four/ http://joshmitteldorf.scienceblog.com/2014/06/12/the-three-d... “3 days is optimal for mice. For humans 4-5 minimum, depending on what you are trying to achieve”
smallegan 10y ago
My brother went through a Stem Cell Transplant for CIDP. He went from being nearly wheelchair bound to being able to run. Look into Dr. Burt from Northwestern in Chicago for a domestic way to get this done.
ericabiz 10y ago
Hi! These symptoms sound familiar; I dealt with this from 2007-2009 and am now mostly recovered. The journey was quite long, but I'll detail what worked for me in the hope that it sheds some light. The important thing you both need to understand is that this won't go away quickly or easily. It will take serious changes and lots of trial and error. Unfortunately, from what we know about autoimmunity (I've seen several doctors and read hundreds of scientific papers on it), some treatments work for some people and not others. The first thing I did was work with a doctor to get tests done. We found the following: -- Chronic Epstein-Barr (this is the "hallmark" of autoimmune/CFS, as I would come to find out) -- What we initially labeled as Celiac disease but later came to be known as "non-Celiac gluten sensitivity" -- Thyroid abnormalities, indicating Hashimoto's, but "not bad enough to treat" as an endocrinologist explained. -- Low vitamin D levels The doctor called me right away when she got the results and said "You need to stop eating gluten NOW." Thus began a multi-year journey into diet. At this point, I was still too tired to even consider exercise or anything that non-autoimmune sufferers recommend for this. What I ended up doing: -- Sold my company (you have to take out whatever the stressor is--you and your wife will likely be able to point to it) -- Took gluten out of my diet for over 2 years. Later I also took out sugar. I've also experimented with keto and paleo, and, to be honest, a ketogenic diet does work extremely well for my symptoms. However, it can add stress to the body, so I'd recommend "low carb, no grains, gluten or sugar" instead if you attempt this. The "autoimmune paleo" diet that is around now seems reasonable, and is pretty similar to what I did. (I have always been able to eat nuts and cheese, however.) -- Added a metric ton of probiotics to my diet however I could consume them. This, plus the diet was, in my opinion, what helped me to heal physically. -- Consumed 5,000IU vitamin D per day (far above current recommendations, but autoimmune sufferers do not digest vitamins well.) Get blood tested every 6 months to make sure yours is still in "normal" range--mine was. -- There is most certainly an emotional/stress/anxiety component to this as well. I worked with several practitioners on that side, using CBT, hypnosis, and mindfulness techniques to go deep into my body and mind and help re-train it to not stress out at every available opportunity. Running a stressful tech company had put me in "fight or flight" mode, and it took years of retraining and therapy to get out of it. I view it similarly to re-training your muscles to walk after you have had an accident. She will have to find triggers and work on them one at a time and train different responses. Talk therapy helps here. CBT helps here. I found hypnosis to help here as well, though some people do not. -- Found out my ACE score was higher than average ( https://acestoohigh.com/got-your-ace-score/ https://acestoohigh.com/got-your-ace-score/ ) and worked on releasing childhood trauma with practitioners. This was a HUGE shift. -- I get flu shots every year since I am still susceptible to illness. I still get sick more easily and stay sick longer than most people. It has been several years and I would say I am at 90%. I have been able to eat gluten again, though I certainly feel better when I do not eat it. I avoid sugar, as it seems for me to be an even worse trigger than gluten. I stay as low-carb as I can in general and eat foods that are high in fat whenever possible. I stay mindful and avoid anxiety triggers. I am on ADHD and anxiety medication, I am under the care of a psychiatrist, and my regular doctor blood tests every 6 months. Over the last 3 days, I've walked over 22 miles, which would have been impossible from 2007-2009, so I've come a long way! If chronic Epstein-Barr comes up in tests, note that certain viruses/bacteria which would be normal for most people (food poisoning, the flu) can trigger a relapse. This unfortunately happened for me just a couple months ago and I was sick for most of January. I worked on mindfulness, took my supplements, and did a lot of meditation, and have come to a healthier mental state yet again, where I'm pretty sure I'll be sick less in the future. It's been 10 years this year since this started, and while it hasn't been a particularly fun journey, it has brought me to a deep awareness of self, enabled me to live in the present moment, and I love who I am much more than I did previously. This will be part of me for the rest of my life, but I no longer allow it to define me. In that sense, I am much better than I have been previously. I hope this helps you and your wife. I know this post is long, but to me it still only feels like it scrapes the surface. This is going to be a journey for you both, and it will have ups and downs. Keep going toward a better understanding of self and how everything in the environment (food, stress, loud noises, what people say) relates to your/her self, and it will get better. If you'd like to reach out, contact details are in my profile.

manmal 10y ago

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/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4284325/

fnord123 10y ago
))<>(( truly is the miracle cure.
salimmadjd 10y ago
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.
- manmal 10y ago
  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.
- uberduber 10y ago
  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.
  - manmal 10y ago
    One thing that helped me (though I'm not yet finished recovering from a period of high stress) was to do the things that strengthen the gut barrier. As long as the barrier is permeable for large particles, you will have foreign objects floating around and your immune system attacking them. Here is a very long article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.66990 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4604320/#!po=2.... Specifically, strains like Bifidus Longum are beneficial, and of course reducing stress (negative outlook etc) is. The article particularly stresses efficacy of 5-HTP, but I've not tried that yet. IMO very overlooked one: weak stomach acid. My symptoms get WAY better if I consistently use vinegar and supplement zinc.

researcher11 10y ago

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.

manmal 10y ago
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?
55555 10y ago
You can just order Naltrexone online and dissolve a pill in 50ml of water yourself.
- researcher11 10y ago
  That's what I'm doing; it's just taking time to get here. ETA one more weeks.

benlambert 10y ago

48-72 hours is not long enough to regenerate your immune system. Valter Longo has recommended at least 4-5 days to treat auto-immune disorders [1]. I've done 5 day fasts. For something serious I would try 7. [1] http://joshmitteldorf.scienceblog.com/2014/06/12/the-three-day-fast-day-four/ http://joshmitteldorf.scienceblog.com/2014/06/12/the-three-d... “3 days is optimal for mice. For humans 4-5 minimum, depending on what you are trying to achieve”

smallegan 10y ago

My brother went through a Stem Cell Transplant for CIDP. He went from being nearly wheelchair bound to being able to run. Look into Dr. Burt from Northwestern in Chicago for a domestic way to get this done.

ericabiz 10y ago

Hi! These symptoms sound familiar; I dealt with this from 2007-2009 and am now mostly recovered. The journey was quite long, but I'll detail what worked for me in the hope that it sheds some light. The important thing you both need to understand is that this won't go away quickly or easily. It will take serious changes and lots of trial and error. Unfortunately, from what we know about autoimmunity (I've seen several doctors and read hundreds of scientific papers on it), some treatments work for some people and not others. The first thing I did was work with a doctor to get tests done. We found the following: -- Chronic Epstein-Barr (this is the "hallmark" of autoimmune/CFS, as I would come to find out) -- What we initially labeled as Celiac disease but later came to be known as "non-Celiac gluten sensitivity" -- Thyroid abnormalities, indicating Hashimoto's, but "not bad enough to treat" as an endocrinologist explained. -- Low vitamin D levels The doctor called me right away when she got the results and said "You need to stop eating gluten NOW." Thus began a multi-year journey into diet. At this point, I was still too tired to even consider exercise or anything that non-autoimmune sufferers recommend for this. What I ended up doing: -- Sold my company (you have to take out whatever the stressor is--you and your wife will likely be able to point to it) -- Took gluten out of my diet for over 2 years. Later I also took out sugar. I've also experimented with keto and paleo, and, to be honest, a ketogenic diet does work extremely well for my symptoms. However, it can add stress to the body, so I'd recommend "low carb, no grains, gluten or sugar" instead if you attempt this. The "autoimmune paleo" diet that is around now seems reasonable, and is pretty similar to what I did. (I have always been able to eat nuts and cheese, however.) -- Added a metric ton of probiotics to my diet however I could consume them. This, plus the diet was, in my opinion, what helped me to heal physically. -- Consumed 5,000IU vitamin D per day (far above current recommendations, but autoimmune sufferers do not digest vitamins well.) Get blood tested every 6 months to make sure yours is still in "normal" range--mine was. -- There is most certainly an emotional/stress/anxiety component to this as well. I worked with several practitioners on that side, using CBT, hypnosis, and mindfulness techniques to go deep into my body and mind and help re-train it to not stress out at every available opportunity. Running a stressful tech company had put me in "fight or flight" mode, and it took years of retraining and therapy to get out of it. I view it similarly to re-training your muscles to walk after you have had an accident. She will have to find triggers and work on them one at a time and train different responses. Talk therapy helps here. CBT helps here. I found hypnosis to help here as well, though some people do not. -- Found out my ACE score was higher than average ( https://acestoohigh.com/got-your-ace-score/ https://acestoohigh.com/got-your-ace-score/ ) and worked on releasing childhood trauma with practitioners. This was a HUGE shift. -- I get flu shots every year since I am still susceptible to illness. I still get sick more easily and stay sick longer than most people. It has been several years and I would say I am at 90%. I have been able to eat gluten again, though I certainly feel better when I do not eat it. I avoid sugar, as it seems for me to be an even worse trigger than gluten. I stay as low-carb as I can in general and eat foods that are high in fat whenever possible. I stay mindful and avoid anxiety triggers. I am on ADHD and anxiety medication, I am under the care of a psychiatrist, and my regular doctor blood tests every 6 months. Over the last 3 days, I've walked over 22 miles, which would have been impossible from 2007-2009, so I've come a long way! If chronic Epstein-Barr comes up in tests, note that certain viruses/bacteria which would be normal for most people (food poisoning, the flu) can trigger a relapse. This unfortunately happened for me just a couple months ago and I was sick for most of January. I worked on mindfulness, took my supplements, and did a lot of meditation, and have come to a healthier mental state yet again, where I'm pretty sure I'll be sick less in the future. It's been 10 years this year since this started, and while it hasn't been a particularly fun journey, it has brought me to a deep awareness of self, enabled me to live in the present moment, and I love who I am much more than I did previously. This will be part of me for the rest of my life, but I no longer allow it to define me. In that sense, I am much better than I have been previously. I hope this helps you and your wife. I know this post is long, but to me it still only feels like it scrapes the surface. This is going to be a journey for you both, and it will have ups and downs. Keep going toward a better understanding of self and how everything in the environment (food, stress, loud noises, what people say) relates to your/her self, and it will get better. If you'd like to reach out, contact details are in my profile.