Has anyone tried following the Meyer's approach in dealing with PMR? If so, did you try it before going on prednisone or while on prednisone. Did it work or help at all with your PMR condition?
I would appreciate any comments in general about her methods or her book as well.
Thanking you in advance for your help.
Not heard of that one to be honest. Worth a try I guess. I am beginning to rattle with Pred and other medication plus vitamins.
Thanks for replying.
What is the Meyer's approach?
She is a doctor who claims to be able to "cure" autoimmune disease using "her" approach. Needless to say, it involves "joining" and purchasing "Programmes" - which involves a probably not insignificant cost to you. And of course, it also involves supplements and stuff which - how conveniently - she also sells via her website.
You may gather I am somewhat sceptical - this partly explains why:
sciencebasedmedicine.org/di...
as does this
sarahwilson.com/2015/03/die...
Sarah Wilson has an autoimmune disorder - so you'd think she might support diet if it worked.
Diet MAY help manage symptoms - it won't cure. Even coeliac disease isn't curable by diet: you manage the symptoms by eliminating the offending substance, in that case gluten. Reintroduce it and you are in trouble again.
A good diet without junk food will almost certainly make you feel BETTER, the American diet is generally far too much of all sorts of junk. Improving it is a no-brainer.
Hi, I have read her first book "The Autoimmune Solution" and have just started on her second "The Thyroid Connetion".
I would like to correct one thing : she does not claim to "cure" autoimmunity, but to "reverse" it.
This said, I so agree that it is expansive and quite a challenge to follow her program. I am now in ± 95% remission from PMR and GCA. I was treated with Prednisone and did my best to use the hypotoxic diet. When I see others having such a hard time getting off Pred, I believe that my diet changes helped me get there.
But I know I have a long way to go to feel "good, energetic, rested, etc." So I so want to try her detox program.
At some point near the end of the first book, I felt so overwhelmed and suspicious, and actually felt depressed. I hate that she called her program "The Myers Way". I hate that she sales expansive supplements, etc. And I felt like the approach was like that of a religious secte. Being in Canada it's quite a challenge for me to get equivalents, etc. But, I like to think that she is so motivated, maybe she started to sale products to make it easyer for her patients to have easyer access to them.
I don't know if I'll be able to go through the 28 or 30 days program; but I am preparing for it. So I will continue to read this thread and hope someone will have some positive feedback. I do appreciate the criticism however. I think it's important to be well informed.
Breaker - see my reply to Steve. It's the first chance I've had to look up some references for you.
Thank you so much for replying to my inquiry re Amy Meyers. I'll definitely check out the website links that you sent to me. I was just diagnosed with PMR and will be seeing a Rheumatologist on April 6th. I have been doing some research on PMR in the mean time and have read her book to get some insight into this condition, along with one other book by Kate Gilbert - PMR and GCA: a survival guide. I am Canadian and haven't been able to find any Canadian websites like this one - healthunlocked.com., but I do read this site daily to try and get a better feel for what I will be facing as far as treatment, symptoms and issues that I need to deal with.
I appreciate everyone's input and comments as I am trying to become more informed about PMR and dealing with it. I was hoping to find someone who may have tried her 30 day diet and supplement program to see if it had any benefit at all for their PMR condition. She is an American doctor from Texas.
Thanks again for everyone's comments. Brian.
There are several Canadians on the forums and there was an attempt to get a Canadian one going but there does need to be a critical mass for a forum to work. One of the other forums here in the UK had a serious forum problem and had to be rescued - it is but a shadow of its former self after several months being up and running again.
You may enjoy the stuff on this site pmr-gca-northeast.org.uk where there are a load of people's stories as well as various medical articles and links to their newsletters.
What sort of a doctor is she? Where did she qualify, ? and has she worked in any hospital you can recognise the name of? There are a lot of snake oil salesman out there trying to part us from our money.
Please see my reply to PMRpro. Thank you. Brian.
Not sure of her provenance! But here are some reviews of her work:
"I could only read this book until I got to the section on dentistry. Her recommendations are not based on any actual science, but rather the musings of a couple of quack dentists including one who has had his license revoked and was legally punished. I am not even referring to their ideas on "mercury" fillings or fluoride, but rather the ideas on cavitations and root canals. The expert she cites even states that diagnosis of "cavitations" requires a good imagination. Based on this, I am highly skeptical of the other scientific resources cited by Dr. Myers."
"Like another reviewer said, "every time I picked up this book I had an anxiety attack." It was a scary, stressing read.
Do you bathe in unfiltered water?
Do you sleep on a non-organic mattress?
Do you eat eggplant, tomatoes, or lentils?
Do you go to a conventional dentist?
According to Dr. Meyers, there's literally nothing that isn't out to get you. This may actually be true, but she left me feeling hopeless instead of inspired to change.
The first portion of the book was filled with big science words and was really interesting to read, although I can sum it up for you with "we're all on the autoimmune spectrum and we're all pretty much screwed". But wait!- there's one path to salvation... The Meyer's Way! Dr. Meyers is to health what Gwyneth Paltrow is to lifestyle: someone championing a way of life that the rest of us don't have the funds or willpower to follow. Who can afford to tear out their toxic "conventional" carpets and repaint with the walls? Replace all their cookware? And don't even get me started about "cross-contamination"..."
"Someone asked about Amy Myers here. She's had a variety of careers. She studied psychology at the University of South Carolina after which she worked as a banker. Next, she worked in agriculture in the Peace Corp in Paraguay. Then, she worked was in school at the University of Washington in Seattle, after which she returned to New Orleans and worked in a bakery. She attended medical school at Louisiana State University then completed a residency in emergency medicine in Baltimore at the University of Maryland where after she worked for a year or two as an emergency room physician in Austin before opening her clinic. For most of her life, she was a vegetarian."
I will be fair - there are also a lot of "It's wonderful", "so scientific" comments too but the general conclusion was that you have to be mega-rich and exceedingly strong-minded to stick to a diet that eliminates almost everything and means eating away from home is impossible!
In her books, she mentions coming down with Graves disease during her medical studies, which got her to look for other ways, after beeing failed by conventional medecine. She did also study in functional medecine.
I'm not rich, and organic, grass fed and free range pultry are not easely accessible to me and over my budget. But that doen't mean it's bad. What is bad is the fact that junk food is continually advertised and on sale, but not so for wholsome food. I have to respect Dr Myers for denouncing Monsanto, Pepsi-Co and such polluting companies.
Swimming against the current is a scary thing, but I think if we are here, it is because going with the flow isn't working for us.
Yes I had looked up reviews of Amy Meyers and her book on the internet and had found the same review that you just sent me and I would have to agree with the comments made above. I did however find much of the books information very enlightening to me since I knew absolutely nothing about PMR., the autoimune system and other items. In this light I found the book a worthwhile read. I hadn't spent much time on the "solution" part of the book and that is why I posted my questions on this website in an effort to determine if her"solution" had any merit to it as told to me by someone who had PMR and had actually tried her "solution".
On another note, I am new to this site and that was my first posting. Are you receiving my replies back to your responses to me. Brian.
Not having read her book I can't really comment specifically - but believe me, there is a lot of stuff out there that, when you read it, is very plausible and apparently enlightening about autoimmune disease which isn't backed up in any way shape or form by real facts. There are a lot of "alternative facts" - which seems to be the new terms for untruths. Given not a lot has been established about GCA and PMR - I'm intrigued.
Yes - getting all your replies.
Hi Breaker, I am now reading Amy Myers' second book, "The Thyroid Connection" and it just so makes sence to me. See my first reply to PMR pro. I am no pro, just a PMR and GCA patient in remission after 2 years of Pred and changing my diet to a hypotoxic diet.
Dr Myers is new to me, saw her conference on Mountain-Lake PBS. When she linked Thyroid, inflammation, and autoimmune, I couldn't overlook this. It is exactly my situation.
The $$$ bit does bother me, and I remain with some suspicion, but part of me thinks she is sincere. So I am preparing to do her program -- without changing everything in my low rent appartment. A lot of what she says makes sense to me. It resonates. Tell me Brian, have you tried it?
I see the posts are 10 months old.
I am doing the AIP(autoimmune paleo) diet. It was recommended by my naturopathic oncologist. A week ago I reduced from 30mg of pred to 25. I'm 4 wks into the diet. I feel great with lots of energy and as a added bonus I've been losing weight! I have heard of Dr. Amy but have not researched her. I'm currently using a handbook which is a DIY guide to living well with chronic illness. It is called the Autoimmune Wellness Handbook, by Mickey Trescott, NTP and Angie Alt, NTC, CHC. Their website is called Autoimmune-Paleo.com.(you can get it on Amazon) I would highly recommend checking this out. I think our body needs all the help it can get to heal. Healing from the inside out makes sense to me. If we are eating foods that cause our bodies inflammation it really does make sense to stop eating them. I've been told that the tapering can go much better when you are on this diet. It will be very interesting to see what happens in the next few months of trying to reduce the prednisone. My regular oncologist really wants me off of it since it's not good for my cancer and immune system. Hopefully I will have something good to report in the future. I live in Oregon, USA. I was very happy to find this website when I was first diagnosed with PMR. What a great resource!
I'm somewhat relieved to hear you haven't abandoned your regular oncologist. But I'm a bit surprised he wants you off pred - my husband was put ON pred during his chemotherapy - it's the only time I have ever seen him with any fat on his face!
No I would never abandon my regular oncologist. The great thing is that he and my naturopathic oncologist work together! I feel that I have the best of both worlds. My naturopathic oncologist is one of just over 60 certified in the US. We are very lucky to have her in our area. (Bend, Oregon)
Do you have any experience with the AIP diet and PMR?
Not really - I have tried omitting things, adding things, in the 5 years pre-pred. Nothing made much difference except my diet was restricted! I was gluten-free when it appeared (I'm allergic to something in the structure of wheat starch and in the UK the only answer then was going g/f), I've done no alcohol, no dairy, no difference. There are people on the forums who have claimed they managed PMR with diet - but the diets they quoted were totally OTT and the shopping and preparation would have been beyond me physically never mind financially! One lady on another forum did the AIP diet for a few months and saw she was much better (not least I suspect for ditching the junk) but the strictures of the diet were too much for her to keep up for long. Which is what tends to happen a lot I think.
I eat minimal carbs and that does have some benefit I suspect - it certainly allows weight control even on pred and I am never hungry even on 2 meals a day. But some of the stipulations of the AIP would be next to impossible to follow here without it costing megabucks that I don't have. I already cook 2 meals many days - OH would never accept joining me on a diet like that!
It's interesting. The UK in general of course is totally anti anything that smacks of alternative medicine. Except oncology departments who realise that whether it works or not scientifically it certainly has a role to play. It allows patients to feel they have some form of control - and the placebo effect is not inconsequential. It only bothers me when someone starts claiming this or that diet will cure/prevent cancer.
PMRpro, Thanks for you reply. It is interesting what you say about the UK being anti-alternative medicine. I do believe there is a place for both and that they can compliment each other. As I begin to taper it will be interesting so see how I do. I know everyone is different but if I can get off the pred faster than most I think I would tribute it to the diet. I'll let you know how this experiment goes! And yes this diet is a bit difficult and expensive. Fortunately we raise our own beef so that helps. I don't know how long I will last on it but will give it my best.
I do agree with you on the part about diets curing cancer. I also think that some foods and other supplements can help it from developing and/or compliment regular medical treatment.
Difficult to tell on the basis of a single test. PMR goes into remission in 75% of patients in up to 6 years - anything from less than 2 years up. So you can't really know without hundreds of people doing it together. You can't have a matched control!
PMRpro, your stat about 75% going into remission in 56 years. Is that with or without prednisone treatment?
No idea, there aren't any figures about non-treated patients - but since pred has no effect on the actual disease at all, it only manages the symptoms, I imagine it makes no difference to the duration of the disorder. PMR is just the name given to the set of symptoms caused by an underlying disorder - in our case something makes your immune system go haywire and it attacks your body tissues by mistake as it doesn't recognise them as "self". There are other causes of the same symptoms - which is an important part of what is called the differential diagnosis of PMR. They must be eliminated and when nothing else is left you can use the diagnosis "PMR" as we mean it.
Will not taking pred make you more likely to get GCA?
I don't think anyone really knows. In some people PMR symptoms are the prelude to GCA, they appear at a similar time. Others have GCA without any sign of PMR and yet others have PMR and don't show signs of GCA until sometimes as much as years later.
There was a paper which both Celtic on this forum and I know we have read a paper that suggested that not treating PMR increased the risk of developing GCA later - but we can't find it anywhere and at least one rheumy in the field disagrees.
I think it is difficult to draw a line between PMR and GCA. I had PMR together with a few symptoms of GCA, including jaw claudication and sensitive scalp. Both those actually disappeared on their own and all symptoms disappeared after I was started on 15mg of pred. The high doses of pred are used in response to the fear of visual loss, especially when someone has already had such signs. Maybe they are not essential in everyone - but there is no way you can tell who is who.
I have been struggling with this for four years about a year ago I did have some scalp tenderness that one away and then months later I had temple pain and it would away and then later I had a jaw pain. But they all Went away?
I wish I could take prednisones but it makes me so terribly ill and bad palpitations and chest pains. But my doctor says there may be a different type of pred that would have less side effects
Got it!
I sure would like to know how you are doing. You are very lucky to have a doctor opened to alternatives. Mine made the gesture of throwing out her stetascope, when I mentioned diet, etc.
Now that I am in remission from PMR and GCA (I would say 95%), she literally pushed me out the door at my last appointment and, unless of a new flare, doesn't want to see me before November 2018. Mind you, she did wish me Merry Christmas, as she accompanied me out the door ;-)))).
I did French Dr Seignalet's hypotoxic diet which was made popular her in Québec by Jacqueline Lagacé. No gluten, no milk products, no sugar, no corn, and cook meat at low heat. Unfortunately, I couldn't do all organic, and toxic free home. But I'm going to do my best to achieve what I can afford and do.
Good luck to you, Louise
Yes, I have read "Amy Myers" book "The Autoimmune Solution" and found it very credible reading, so much so that I embarked on the 30 day diet 8 weeks ago. I didn't use her own recipes, but made up my meals from the list of permitted foods which are basically meat, poultry, fish, fruit and vegetables, although there are a lot of things within the latter that are excluded eg tomatoes, potatoes, peppers. Everything should be organic wherever possible, which of course makes for a very expensive diet which I just couldn't achieve. There is emphasis on the exclusion of gluten and dairy. There are also suggested supplements to take, but I did not purchase these, instead I bought organic natural supplements from a reputable retailer in the UK that combined the same ingredients.
Filled with enthusiasm, I was happy to embark on this diet as it is basically good food, although very restrictive with no treats at all including alcohol. I have bought a water filter, as this did make a lot of sense to me, but have not detoxed my house, or replaced toiletries etc with organic products, it is just too expensive. Stress is another factor, but I am happy to say that my life is not stressful apart from, of course, having to deal with 18 months of a PMR/GCA journey.
8 weeks on and I have lost half a stone in weight, which I actually didn't need as I was around my optimum weight of 8 stone before I started. Could I honestly say that I have had more energy and feel great, NO I cannot, but then if I am honest I have been struggling with my symptoms since the beginning of this year and am probably not taking sufficient Prednisolone to deal with my symptoms, so I think this has probably masked the overall effect of the diet. I have continued with it for a further month, maybe in the hope that it will make a difference, but I am no longer expecting a miracle cure to my PMR/GCA through diet, it just seems too good to be true.
Thank you so much for replying to my posting. You have been the first one who has actually tried the diet and it was good to hear your results to date and your comments. Much appreciated. Brian.
Fibromyalgia
With humility and respect, some PMR lessons learned
To increase meds or not to increase meds that is the question.....
Prednisone and necrotic hip
