ABOUT E.M. and M.E.: My Story

I am a 43-year old woman, raised in Dublin, Ireland and now living in Seattle, Washington, USA. In the early hours of November 7th 2011, I got sick overnight with what felt like a very bad virus. The symptoms morphed and changed over time, but it never went away and I have felt extraordinarily sick every day since then. I have visited many doctors and have had many tests.

In May 2012, I finally had to leave my job, my career, my social life. Almost a year after I got sick, I was officially diagnosed with chronic fatigue syndrome (CFS) — known as myalgic encephalomyelitis (M.E.) in the rest of the world — and there is no doubt in my mind that this was triggered by the flu shot (in a body already battered by stress, lack of sleep and a history of autoimmune conditions and allergies), which I got one week before the onset of viral symptoms.

In August 2014, I saw Dr. John Chia, one of the country’s experts in this disease and he confirmed M.E. and agreed the flu vaccination was the straw that broke the camel’s back.

Before M.E., I was diagnosed with Graves Disease and had the toxic goiters on my thyroid ablated with radioiodine. I’ve also been battling idiopathic anaphylaxis, angioedema, vasovagal syncope and a slew of other symptoms for 14+ years, which were only recently diagnosed as Mast Cell Activation Syndrome.

I have been completely housebound, often mostly bedbound, since September, 2012 and, since then, I have very slowly slipped downhill. I am currently trying everything I know to gain some momentum and find a life with this disease, without causing further disability from treatment reactions.

I started this blog originally to chronicle treatment with low-dose naltrexone (a drug therapy not approved by the FDA, not used by very many doctors, and not backed by a lot of studies), but I stopped taking it after a month. My blog has since become my communication with my friends and family, my diary, my symptom tracker, and a therapeutic outlet. It has also connected me with some extraordinary people, for which I will forever be grateful.

I hope to help others with M.E. by providing info, support and the realisation that you are not alone!

This is how my illness started. Find My Story here and here… so far.

Blog cover page image of phoenix by ClintonKun

20 thoughts on “ABOUT E.M. and M.E.: My Story

  1. Fibro Feist says:

    Hey there. Thanks for the follow. I have been taking LDN since September, and am really not sure if it’s made a bit of difference. What was your experience like with it? Looking forward to keeping in touch.

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    • E. Milo says:

      Hi Sarah! If you want the blow-by-blow account of LDN for me, it starts on my very first blog post. I only lasted a month. I could not sleep the whole time I was taking LDN and, at the end of the month, I went from being fairly active to housebound. I can’t entirely blame LDN because ME is very unpredictable, but I didn’t realise back then how severely lack of sleep could affect me and increase my symptoms… I didn’t notice any positive effects in that month. Good luck! I’ll be reading…

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      • John says:

        I read through your bio quickly . I was having the time of my life as well. But I think the earlier periods in my life may have started the trigger . And it was inevitable for the Cfs to kick in . And the allergies , I got shots for . If it was not for the shots , I would now be in serious troubles .

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  2. Lauren says:

    Hi,

    I wanted to recommend a very resourceful doctor who specializes in fibromyalgia and CFS–Jacob Teitelbaum, MD–and he knows these conditions as an insider. He contracted CFS while attending medical school and had to drop out for a year to recover. In the ensuing 30 years, he’s dedicated his career to finding effective treatment. He’s written several books on the topic, including his latest, “The Fatigue and Fibromyalgia Solution” (Avery Penguin, August 6). For more info, check out his website, http://www.vitality101.com and to preorder, http://www.vitality101.com/the-fibromyalgia-and-fatigue-solution.

    Best,

    Lauren

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  3. Trisha says:

    I’ll add low dose naltrexone to my list of things to not try. A month without sleep sounds absolutely awful.

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  4. Michelle says:

    what made you interested in trying naltrexone?

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    • E. Milo says:

      I saw a naturopath very early in my illness who recommended it. That was back in the days when I listened to doctors. But I also read really wonderful stories of success from many ME sufferers, so I decided I had nothing to lose. Unfortunately, I lost my ability to leave the house! But, I might try LDN again one day. I just wouldn’t take it at night. 🙂

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  5. Hello! I love reading your blog and so I have nominated you for a Liebster Award. Check out all the details here: http://myjourneythrume.wordpress.com/2013/10/19/dearest-beloved-we-are-gathered-here-today/

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  6. I love your blog and in appreciation have nominated you for The Liebster Award. Follow this link for more. xx http://currankentucky.wordpress.com/2013/10/19/emmys-and-oscars-who-needs-em/

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  7. Will says:

    Hi. This is Will from Vertical Searcher. I replied to your comment but don’t know if you saw it. Followed you here, am glad to see the phoenix 🙂 I want to extend my friendship to you. I too am in the PNW. Seattle. When I get home from work tonight I will be praying for you. Stay strong and well. You’re not alone.

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  8. How did I not know about this blog when you have been following me? I am following you now.

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  9. Jackie says:

    Hi just found your blog. I am writing from Dublin Ireland. I see you grew up here. I have ME I think for most of my life. I got very bad in 1987 and was bedbound for seven years. Got a lot better and then started to go down again about three years ago. You will improve you are doing all the right things. All the best.

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  10. bertieandme says:

    Bertie and I have given you a shout out in the Leibster Awards this year, as you are one of my all time favourite bloggers http://bertieandme.wordpress.com/2014/07/14/leibster/. However, I know you are ill so you don’t have to do *anything* (although I’d love to know the answers to my questions!) – just know we love reading about your life. Jak x

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  11. Hi Elizabeth, I just discovered your blog. I find it very interesting and helpful, and I greatly appreciate your candor (and I love that you are a dog lover too). You kindly left a comment on my blog months ago and I’m so sorry it’s taken me this long to discover yours! I feel for you and your situation…I also have gone for months at a time being house-bound and bedridden due to my own autoimmune complications (mainly Crohn’s which has spilled over into chronic fatigue and fibromyalgia symptoms). I follow a Paleo-like diet (somewhat similar to what you’re doing) and it has helped me a lot, although everyday is still a struggle. I saw that you’ve met with Dr. Chia…he actually used to be one of my doctors too (small world)! Wishing you all the best on your road to recovery, and looking forward to following more on your blog.

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  12. Lisa Nicholson says:

    Hi Elizabeth,
    Know what? You’re the FIRST person I’ve ever heard describe having episodes (what I call crashing) around their periods like me. I was diagnosed Chronic Fatigue, later Adult Growth Hormone Deficiency and yesterday with MCAS. I’ve suffered greatly at the hands of Dr.’s who insisted it was “in my head”, I was “crazy”, “depressed” “fat” and “lazy”. Anyway, if you have any insights on why the periods trigger this please let me know. My mom keeps wondering if I’d feel better if I had a hysterectomy, which wouldn’t be a big deal for me given that I’m 45 and am done having kids.

    Kindest regards,
    Lisa Nicholson

    Like

  13. k. says:

    Hello, Elizabeth:

    I’m in the greater Seattle area as well! And I believe that my severe eczema bout was also triggered by a flu shot!
    Good luck; have you been to naturopathic doctors?
    Also, I found your blog via the blog Paleothoughts; I submitted a comment to Paleothoughts but it hasn’t yet appeared on the site; and there doesn’t seem to be a way of getting hold of the owner; thoughts?
    I wish you luck; here’s a link I found interesting re the low-mold, etc.:

    http://chronicfatigueandnutrition.com/digestive-disorder/eczema/

    Karen

    Like

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