fibro Archives

Bungee Jumping Off the Friendship Cliff

Tonight, while looking for something on Facebook, the search ironically brought up my ex best friend. To know what an unprovoked emotional attack this was by FB you need to know she & I were never FB friends & share no friends in common. So like I said, very uncool Facebook! Suddenly there she was: standing on the [...] Continue reading →

ME/CFS Researchers Go From B-Cell Depletion Therapy to Enbrel

Fluge and Mella of the Rituximab clinical trials are now recruiting for a trial on Enbrel (Etanercept), a TNF-alpha inhibitor, for ME/CFS patients that didn’t respond to b-cell depletion therapy: http://clinicaltrials.gov/show/NCT01730495 In the big picture, I like where Fluge and Mella are going. They seem to me like men on a mission that won’t be stopped. [...] Continue reading →

Study Shows 93% of ME/CFS Tests Positive For Mold Toxins

A groundbreaking study confirms what a lot of us have been thinking: Thrasher, Hooper, Brewer et al showed 93% of 112 ME/CFS patients had at least 1 mycotoxin in urine tests. Zero of the 55 controls tested positive. Here’s a closer look at a few new and interesting treatments, and my attempt to piece it all together. Ketotifen: [...] Continue reading →

ME/CFS: A Big Fat Allergy?

As the world turns, waiting for someone to prescribe methotrexate….. Since my last post, I’ve only seen more evidence that this whole b-cell depletion theory is more about researcher ego and quests to coin theories rather than what’s best for patients. If you’re shocked, you probably haven’t been sick for very long. (4.28.13 Update: Please see [...] Continue reading →

Cancelling Easter – A Patient’s Journey Through the Holidays

A few hours ago I cancelled Easter. Not the whole holiday obviously & not by choice. I used to love the holidays: family members you didn’t see often enough all traveling to get together, eating foods we all knew were bad for us, in quantities we’d regret later. Talking & eventually laughing so hard we [...] Continue reading →

Groundbreaking Study in Fibromyalgia

A small study could be groundbreaking for Fibromyalgia patients. A study conducted by the neurology department at the University of Wurzburg, Germany has discovered small nerve fiber neuropathy in Fibromyalgia patients. The researchers conducted a small study, comparing Fibromyalgia patients to people with depression & healthy controls. What is small fiber peripheral neuropathy? SF [...] Continue reading →

Allodynia (aka: Don’t Touch Me, My Skin Hurts!)

In the middle of the night, someone took your soft, 400 thread-count cotton sheets & exchanged them for dry, course, 400 grain-count sand paper. Every time you moved or rolled over, the sand paper stripped away another layer of your skin. The next day, simply putting on a shirt or brushing your hand over your [...] Continue reading →

20 things patients never take for granted

Soap. Yup, soap. If we find products of any kind we can use long term (make-up that doesn’t make our face bright red in all the wrong places, cleaning products that don’t feel like a toxic assault, finding the tri-fecta of a laundry, dishwasher and body soap that doesn’t bother us (& doesn’t bother us [...] Continue reading →

Cold Thermogenesis for Lyme Disease, Fibromyalgia, ME/CFS, Mold Illness

Sometimes you come across protocols that just seem crazy. In a community where snake oil is a-dripping a-plenty, we tend to start with skepticism. This was the case when I first heard about Cold Thermogenesis. Tim Ferris discussed cold immersion in his book, The Four Hour Body, but what really caught my interest was this [...] Continue reading →

Science Catches Up On Sleep

Sleep impairment (falling asleep, staying asleep) is arguably one of the most widespread symptoms among all autoimmune illnesses. It’s also that one symptom that I have the least control over. Getting quality sleep can spell the difference between somewhat functional and must feel pulse to make sure I’m alive. Without knowing which tomorrow will be, it’s [...] Continue reading →

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