Friday, July 22, 2011

Myalgic Encephalomyelitis International Consensus Criteria (link to article)

Worth a read and possibly printing out for MD's (I only copied a couple paragraphs from the article). It's worth reading the entire article which is at the link below.

From the ME Association:

Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) [1-3] and immune system [4-8], dysfunction of cellular energy metabolism and ion transport [9-11], and cardiovascular abnormalities [12-14]. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners, and benefit both the physician and patient in the clinical setting as well as clinical researchers.

............and more........

Using “fatigue” as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion.

No other fatiguing disease has “chronic fatigue” attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day.

The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days.

The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME.

Wednesday, July 20, 2011

Two Months Already...

I can't believe its been two months since my last post. A lot has happened since my last post but then a lot always seems to be happening. I'm living a typical Irish life-full of joy but also tragedy.

I'm trying to keep this blog focused on treatments and/or themes that those of us with this disease all share. I'm still working on my other two blogs but they have taken a back seat for now.

Two days after my last post on May 18 my dad and his wife arrived from out of state for a visit. They stayed for about 4 nights. I was deeply grateful I was able to see my dad for 3 nights in a row. Last year I was too sick to even see him for a 2 hours.

As some of you are aware, my dad is very, very ill with complications from chronic lymphatic leukemia, a recurrence of prostate cancer, kidney disease, peripheral neuropathy, severe hypertension, and so on. The drive here from out of state took a lot out of him prompting his wife to let us know it would be his last visit out here.

Monday night arrived-his last night here. Time to say goodbye. I wanted to hug him and not let go. As I turned away trying not to let him see me cry I was aware that unless I have more improvement that would be the last time I would ever see him.

I walked out into the night not knowing if that would be the last time I'd get to hug my dad or say goodbye. When I got home my 17 1/2 year old kitty was doing poorly. She'd been going downhill for the past month. I stayed up all night with her so she wouldn't feel alone as she approached her death. She died not 12 hours after I said goodbye to my dad.

I've been wanting to write a blog post honoring my kitty's memory but it has been too painful. She was my special girl. I'd hand raised her from 4 days old after her mom abandoned her while trying to move her litter across a busy schoolyard. The mom got spooked by the excited kids gathering around to see this cat and kitten. The mom dropped my kitty. Luckily two friends of mine who happened to be teaching nearby heard the commotion and rescued her and brought her to me. She was like a baby. I had to feed her every 4 hours around the clock. I also had to perform all the functions a momcat would do. Consequently a deep bond formed between me and my kitty. It deepened over the years as we weathered many life events together. Having a chronic illness and being housebound/bedbound these past 4 years created an even deeper bond. I think anyone who has lost a pet while chronically ill can relate to the depth of grief that occurs.

And there are good things happening too. I'm much improved from last year. I'm actually doing better than I ever have been since getting ill. I still have a very limited life and narrow area of functioning but I can do more than before and I can also have visitors.

Next week I get to see my cousins whom I haven't seen in awhile. I'm looking forward to it.

I have a couple decisions to make. The first concerns treatment and the second is problem solving about a big family reunion that will take place next month about 500 miles from home. I have no idea how I'll do it but its my dream to be able to attend. All my extended family will be there to celebrate my Aunt and Uncles' 50th wedding anniversary. My dad and his wife plan on being there also. It will likely be the last time we all get together as an extended family like this. I can't express how badly I want to go. Do I fly? Be driven? Take the train? Or do I even risk it?  I've never traveled since getting sick. The consequences could be bad but there's a way I don't care. I'm tired of my life being dictated by this disease. And I want to see the people I love most all gathered in one place.


I got my lab results of some extensive bloodwork. The results were surprising in some ways. Not surprising are my elevated liver enzymes again. My carbon dioxide was low. Glucose was "alarmingly low" (says my doctor). MCH was high (whatever that means).

My Natural Killer Cell function (which destroys cancer cells, viruses, bacteria etc) was very low at 6. That's all the protection I have against infections and cancer-its barely any. NK function is being used by many ME/CFS doctors' as a diagnostic tool.

The most surprising result was my bad cholesterol was pretty high. Heart disease does not run in my family at all and my diet is good. I can't even tolerate fats, I don't drink, smoke, am not overweight and have none of the risk factors for high cholesterol so it was puzzling.

According to my doctor I have 3 bacterial infections. The Bartonella test was equivocal. That along with my symptoms means Bart is still active. My Mycoplasma pneumonia results were also high. But what was extremely high was the Chlamydia Pneumonia (this is not an STD). In fact, it was so high that the lab doesn't measure anything higher so I think that was the triggering infection and will likely be the most difficult to treat.

While doing research about CPN (chlamydia pneumonia) I discovered there are a lot of studies that show a correlation between CPN and atherosclerosis/heart disease/heart attacks/stroke. And I mean a lot of studies-not one or two. I first got CPN in the 6th grade. When I relapse or am in a bad crash I feel the exact same was as I did then.

I found a great site on CPN. I've started taking most of the recommended supplements and have found them helpful. The only thing I need to add in is the antibiotic (doxycycline) and I'm waiting on that until I decide about the trip. Once I can tolerate the doxycycline I'll add in azithromycin and work my way to Rifampin and Flagyl. The treatment is very, very long and difficult (but then so is this disease) I think since my titers are sky high that treatment will be especially difficult. But then I haven't shied away from difficult things. I might be terrified but I still do it.

Treating the CPN will also help the Mycoplasma. I've restarted herbal treatment for Bart and still take Valtrex and Famvir for the viral infections which, thank goodness, brought me to my current level of functioning.

This month makes 4 years since I've been sick. When I look back I can see that I've been sick longer but attributed my symptoms to being extremely busy.

My original question regarding treatment was do I attempt to treat the C. Pneumonia but as I was writing this blog post I realized how can I not treat. If I don't treat the CPN I risk having a heart attack or stroke at some point. Having this disease already puts us at higher risk for a heart attack. Research has also demonstrated that people who've had heart attacks who treat the CPN infection have a much lower risk of having a future heart attack.

In the meantime my gastrointestinal system has absolutely tanked. I'll see a GI doctor Monday.

That's it for now. If anyone has travel tips/suggestions feel free to express them...

I'll post what I decide to do.

I wish everyone much peace and healing....