Hope

Hello fellow lupies.

I just wanted to share with you a really interesting article in the Huffington post about the 'Functional Medicine' approach to treating autoimmune disease called "How to stop attacking yourself". Here's the link:

huffingtonpost.com/dr-mark-...

I have used a similar approach and I have a much better quality of life now, and I'm not taking any drugs. Here is my blog where I talk about my thoughts on the matter which includes links to other articles and documentaries on the subject of autoimmunity:

permaculturedesigner.co.uk/...

Happy reading :)

10 Replies

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  • This is very inspiring, I have been cutting out gluten from my diet, and trying to eat more wholesome foods. I will try all of your tips and see how I get on. Thanks x

  • Dryad.....love your hope sign....I believe we are on the right track. Granted, I am still having trouble going gluten free because I hate cardboard bread...I am however, cheating and taking digestive enzymes that break down gluten, veggies, dairy, carbs...etc.. I do believe enzymes are the cure for the future. I am so happy to read this and I hope this article will reach the world and change our method of medical care. It is still incredibly difficult to change our environments, reduce our stress, change our diets, but at least we are going in the right direction....thank you for sharing!! Back in April of this year, I had thyroid nodules (two of which were somewhat large), and tested positive for lupus. Low end. Recently, a new round of blood tests showed I had no lupus, and no hashimotos which I was told by a endocrinologist that I was slightly hypothryoid last year. I have been taking digestive enzymes since April. I stay away from dairy. I still have areas of arthritis, but manageable, and cracked heels,but found taking flaxseed heals the heels. Ha!.I take the b vitamins... I still think more research is needed as I think it is nearly impossible to clear up all inflammatory problems. Vitamin, mineral deficiency or absorption problems through intestines. Lot of work...and hard to determine how much to take...still a work in progress.

  • Hi Dryad - thanks for these. I'm slowly reading two books on the gut and autoimmunity which tarry entirely with your Huffington post chap's piece.

    I was diagnosed with RA three years ago after a lifetime of allergies, including severe eczema and alopecia. Methotrexate (by pill and then injection) and Hydroxichloraquine came after a violent reaction to Sulfasalazine. I managed with both drugs for two years despite nasty side effects which eventually became unbearable. Both drugs, particularly the MTX, appear to have kicked my RA into the long grass. Whether it will return is anyone's guess - RA doesn't usually go away.

    But I've been gluten and dairy free for three and a half years now and try to stick to an anti- inflammatory diet. I often wonder if this and my regular exercise regime are why I seem to fare so much better with my RA than others I know are able to. Then I get a hold of myself because I'm still really not that well and have struggled with chronic parasthesia for over a year now - I think it was how my RA started. And I'm hypothyroid too.

    I've just started Gaberpebtin for the parasthesia - was very reluctant but also desperate. I take mineral and vitamin supplements including B12 and D and I walk my dogs daily too so there's not a whole lot left for me to try now. Of course I hope my RA stays away - its been three months now since my last dose of methotrexate.

    So I do agree that the gut and diet and tackling allergins are all central to addressing autoimmunity. But if my primary condition - the RA - come swooshing back then I won't hesitate to opt for hard drugs to get things better controlled again. Having suffered anaphylaxis once and other horrible reactions to all the drugs I've tried so far I agree that bursts of these drugs can help but my own body seems unwilling to host them for very long. So this article is welcome to me although I haven't the means and am too remote to be able to access a naturopath such as this chap so am still at the mercy of the mainstream medical profession unfortunately!

    Twitchy

  • Yes a very interesting article. It is ironic that the lifestyle advocated is very much what I have always adhered to before developing lupus. Avoidng stress is perhaps my weakness. I am interested to know if you were on any conventional meds and if so at what stage in this process did you manage to stop taking them?

  • Dryad, I know from your previous posts that you're following a non-medicated path to addressing the lupus and you have my admiration. I have come to a similar view about how what we eat etc impacts our bodies but I'm yet to have enough courage to drop the meds entirely. Your example is inspirational, so thank you for sharing it with us.

  • Hi Dryad,

    It's the first I've heard of any of this it sounds very interesting. It will take some time for me to digest all the information (brain fog). Thanks for this new light on the problem for me.

  • Very very interesting reading, thank you so much for posting this information. I already, dietary wise, adhere to the regimen outlined here more or less.

    I do not wish to be a spoil sport, but please anyone thinking of embarking on this route, please do not just stop taking any medications prescribed by your doctors, let them know what you wish to do, and take advice on tapering down medications, if you are deemed able to do so by your doctors. Abrupt withdrawal from some medications can be dangerous.

  • Interesting reply, Karen. I too have been adhering to the recommendations in these 2 interesting links posted by dryad. I've been adhering to the dietary recommendations for over 10 years now, and most of the other lifestyle recommendations for all my adult life. Even so, I have to admit, the going over those decades has been vvvv tough and vvvv depressing much of the time.

    I wonder if my case is a good representation of how these links' recommendations can help a lot:

    I'm 60 and have been in treatment for systemic lupus for going on 4 years. At the time this systemic treatment began, my drs & I were unaware I'd been diagnosed with systemic lupus as an infant & teen. So, except for emergencies etc requiring antibiotics & IV steroids etc + procedures on various parts of my anatomy (spine joint denervations, amputation of a chondrosarcoma etc), I managed my version of autoimmune Illness, & its secondaries, without systemic treatment all my life...until, that is, the relentless progressive debilitation of my lupus got so bad that it was finally (re) diagnosed & systemic treatment began.

    Now, having spent a lifetime figuring this stuff out by doing a lot of independent research (while drs had me on prescription NSAIDS & analgesics which were ineffective & upper GI meds which were more effective...but I always came off these meds as soon as I proved I could manage without), I'm still continuing to closely follow the sort of recommendations in dryad's 2 informative links....but I know for sure the reason I am NOW feeling more resilience, stamina & general well being than I've felt since my 20s-30s....is only partly thanks to all my lifestyle management, because it's my systemic prescription meds that have really improved my wellbeing massively over the past 3+ years (daily oral meds: 400mg hydroxychloroquine + 20mg amitriptyline + 1000mg mycophenolate & up to 3 low dose 4 week prednisolone tapers per year...I also comply with topical prescription meds regimes for various secondary conditions)

    So, my consultants & drs & complementary practitioners all tell me my lupus probably would've progressed faster without all those years of my lifestyle management. But, at this stage in my life, I do need the help of heavy duty meds....the proof is clear in the improvement in my general condition over the past 3+ years

    Most of my drs & consultants think my autoimmune problems are mainly due to 9 months of daily in utero exposure to the notorious artificial oestrogen DES (Diethylstilbestrol)

    so, Dryad's links do fascinate me

    And I hope my example is useful to others

  • Yes, this is how I manage my auto-immune problem and have been doing so for 14 years with the help of homoeopathy, too. Thanks for the information.

  • I would echo what Lupuskaren said - it's extremely important to only reduce meds with supervision from your doctor. Never taper off your meds without supervision as this can be dangerous.

    I would like also to be clear that I am not symptom free (unfortunately) but I can usually keep the inflammation down to a manageable level with all the natural measures that I use, and I only resort to ibuprofen occasionally. I was on 500mg of Naproxen twice a day couple of years ago and I slowly tapered this down to nothing with support from my consultant, when my ESR started to drop. It dropped from 30 down to 7 over 2 years. I also tried hydroxy which didn't agree with me, and steroids were a disaster, to in a sense I was forced to find alternative means of treatment. I now feel that drug therapies are there for emergencies but not for long term treatment ideally. But I guess you just gotta do what works!

    I thought I'd just throw in my thoughts and these articles so that those of you who are new to the world of autoimmune diseases could see that there is another way of treating the condition, which can either be a complement to the drug therapies, or an alternative in milder cases like mine (I don't have any organ involvement). For me, having Lupus is still an all-consuming business which challenges me every day, but I think I live quite well considering the challenges :)

    Thanks for all your comments.

    Dryad

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