Poll: Which Type of Treatment Has Worked Best For You?

[Hell...Hath...No...Fury..]

I need antioxidants added to the list

 

[Jan]

Maybe you need to add that these treatments should be just for the ME. Some people may take anti d's for anxiety or depression if they suffer from that too. It should only be included in this if it is helping the ME symptoms.

Also, is the poll about treatment prescribed by physicians, or should we include supplements we decide to take ourselves? I voted unable to obtain treatment, I do pace, but I've never been advised to do so by a doctor. I take high dose EPA, and I'm dabbling with different vitamins, but again, never doctor prescribed.

 

[Snow Leopard]

N/A

 

[KME]

Some patient surveys give detailed info on what has helped and hindered hundreds and thousands of patients - they don't contain all of your options (generally because lower numbers have tried them), but well worth a look.

Check out p.9-10 of MEA's 2010 survey http://www.meassociation.org.uk/managing-my-me-me-association-publish-results-of-huge-survey-report/ (scroll down to download pdf). For drugs for pain, sleep, depression and bowel issues, see from p.14 onwards.

See also p.19 of Action for ME's 2014 survey https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf.

 

[Second Wind]

You also need the option - diet.

The autoimmune protocol has taken me from not functioning at all and feeling l could not survive, to functioning at a much higher level, having a life again, going on holiday, walking with a walking group etc and this despite untreated Lyme disease for nearly 20 years on top of pesticide and mercury poisoning.

Same for me. The Wahls protocol with VSL probiotics has made the boggest difference. Removing gluten dairy eating organic had made the biggest difference before that.

 

[brenda]

Same for me. The Wahls protocol with VSL probiotics has made the boggest difference. Removing gluten dairy eating organic had made the biggest difference before that.

I started off on Wahls but realised l had to stop all grains but could not go keto due to my thyroid so joined the Facebook group doing autoimmune for Hashimotos which l have, and added Jack Kruse's advice for more fish.

 

[TigerLilea]

Same for me. The Wahls protocol with VSL probiotics has made the boggest difference. Removing gluten dairy eating organic had made the biggest difference before that.

I did the Wahl's diet but did not notice any difference at all to my health.

 

[Gingergrrl]

so joined the Facebook group doing autoimmune for Hashimotos

Is the FB group for autoimmune diet/Hashimoto's helpful in your opinion? I was curious if it is a diet that applies to all autoimmune diseases (I do actually have Hashimoto's and have been gluten free for 3-4 years) but I have other auto-antibodies, too, and suspect I would be sicker than others in the group. Is it geared mostly toward healthy people w/a thyroid issue or toward a variety of illness levels? I am interested now in learning more about autoimmune diets but no idea where to start?!

 

[daisybell]

I think LDN has helped me but I'm not sure that the effect hasn't worn off.....
I'm too scared to stop in case I crash but I am still on a downward trajectory. I don't regret taking it at all though as it definitely gave me a boost in the beginning. Plus I don't know how much worse I might be without it!

 

[brenda]

Is the FB group for autoimmune diet/Hashimoto's helpful in your opinion? I was curious if it is a diet that applies to all autoimmune diseases (I do actually have Hashimoto's and have been gluten free for 3-4 years) but I have other auto-antibodies, too, and suspect I would be sicker than others in the group. Is it geared mostly toward healthy people w/a thyroid issue or toward a variety of illness levels? I am interested now in learning more about autoimmune diets but no idea where to start?!

The diet is suitable for any autoimmune illness as it is about healing leaky gut but most of the folk have Hashis. You go strict till all symptoms are gone which varies, some taking a few months and others maybe a year, then you start to reintroduce. I know my symptoms will not go as easily l have Lyme but l feel it gives the best chance of curing it, due to the immune system being relieved of having to fight against foods all of the time. Quitting gluten helped me but nowhere near as much as AIP.

I have five autoimmune conditions, my MCS symptoms have gone right down, histamine problems much better, IC has gone which has been a huge relief, dry eyes seems to have cleared though l darent stop eye drops since l was having corneal erosions.

I broke the diet a few times over Christmas and have been struggling to get back but am nearly there. Once you get used to it it is great but eating out is not easy though can be done now and again. I love the food. The support of the group is good. It is called the AIP/ elimination diet and you very quickly find out what your own body rejects once it finds its voice, and you can tailor it.

Yes l am sicker than most there but it has been invaluable for recipe ideas.

 

[brenda]

No heathy people with Hashis lol they are pretty sick at the start, but yes it is not as easy when you have a number of autoimmune condition s plus infections.

 

[Gingergrrl]

but nowhere near as much as AIP.

Thanks and is AIP "autoimmune protocol" or "autoimmune paleo"? I will send you a PM re: the group info to not take this thread further off track than I've already done .

No heathy people with Hashis lol they are pretty sick at the start, but yes it is not as easy when you have a number of autoimmune condition s plus infections.

I agree that people w/Hashi's can be pretty sick at the start but was curious if most of the people had additional health problems on top of Hashi's like me. But regardless I want to learn more about the AI diet and would find the info interesting to read. Thanks again.

 

[brenda]

Autoimmune protocol yes.

 

[brenda]

I recommend this book:

https://www.amazon.com/gp/product/1...=1936608391&linkCode=xm2&tag=wwwthepaleomo-20

In it, Dr Sarah Ballanyne explains the science behind it. There are a number of autoimmune protocols including hers, and of course Dr Wahl's. I found that I had to go on the strictest because of the advanced stage of my autoimmunity so ended up on the FB one with some modifications for myself maninly more fish which, I eat it most days, and including raw oysters which are recomened by Dr Jack Kruse. I also use his recommendations for improving the function of the mitochondria with grounding work, getting in the sun (or using a sun lamp) cold thermogenesis when the weather is warm, blocking blue light, and reducing wi-fi exposure (I am arranging wirring only).

 

[gettinbetter]

Thanks for the poll it is useful
I would like to see HBOT on the list as it seems some people are experiencing good results with it
Also the Ketogenic diet

 

[Seven7]

I wish you can add OI meds. Best treamtent in my book (midodrine, florinef, beta blocker)