Friday, May 29, 2009

More Next Steps

My brain fog is back bigger and better than ever! The one positive thing I can say about the brain fog is my delight in finding things I forgot I had. I've made quite a few discoveries these past few days.

I spoke with my cfs doctor yesterday. Luckily it was right after I received an email with the announcement by Dr. Meirleir that he had discovered the cause of cfs so I had a chance to run it by my doctor. He was skeptical but asked me to send him the link. My doctor's office is in regular communication with Dr. Cheney and other top cfs docs. They hosted the Sonoma Working Group which consisted of all the top cfs docs around the world (as well as LLMD's) to put their heads together to try and figure this stuff out. I'm reserving judgement about the announcement until I have more information.

I'm to continue Valcyte for six more weeks. But if my mood worsens to stop it. We are going to try Lamictal to address the depression. Lamictal is an anticonvulsant that has been found to be effective against atypical depression as well as treatment resistant depression. It may also have minor impact on HHV 6.

Once Valcyte is done I'll start treatment for parasites. I've had intermittant upper right quadrant pain since my illness began.

There is an immune modulator coming out in the next couple months (no-its not Ampligen) that my doctor wants to try on me to see if we can ramp down the overactive immune system.

I also got a referral to a cardiologist for a tilt table test to be evaluated for POTS (postural orthostatic tachycardia syndrom). Link to POTS place here: Sue Jackson had mentioned this might be a possibility with me so I brought it up with my doctor and he agress. It's a bit strange to see a cardiologist for POTS because its actually a neurological condition but affects the heart.

The antibiotics, Mepron, and Valcyte have been rough on my body and it will be good to have these treatments behind me. I think I'm going to be focusing on alternative treatments next.

I have run across an interesting phenomenon in the cfs world. This world is centered around contact via the internet so maybe that accounts for some of this.

Chronic Fatigue sufferers often talk about judgements and criticisms from doctor's and friends or family members who don't believe them etc. I've encountered doctor's who don't believe in this illness as well as insensitive comments from a few people I know. But I have to say the most destructive criticisms and judgments have been from fellow cfs sufferers.

I've seen people on various message boards jumped on for exploring lyme or seeing alternative practioners or seeing western medical doctors. Everyone has their opinion. We criticize people who are healty for doing the very thing that we do to each other. Which is to criticize the way others are dealing with their illness. I think feedback is important and I don't shy away from that but I do take issue with harsh judgements and criticisms.

I have been criticized for exploring various treatments to improve my quality of life and I'm tired of it. I am on Valcyte because every doctor I have seen has recommended it based on test results. I have high titers to EBV and HHV 6-both are very destructive viruses. I have been seen by a rheumatologist, an immunologist, a doctor who specializes in treating this illness. All of whom looked at my symptoms and my test results and came up with the same conclusion-I have active HHV 6 and EBV. These viruses cause cancer, multiple sclerosis, viral myocarditis, and many other things. So I'm taking Valcyte to deal with the viruses. Do I like being on Valcyte? Absolutely not! Do I think its going to work? Who knows?

But you know what? As bad as the depression has been, at least in the back of my mind taking Valcyte has given me six months of hope. Sometimes it has been that tiny ray of hope that the Valcyte might help that has kept me alive. If that's the most I get from taking Valcyte for six months so be it. At least I'm alive. There are probably a couple people that are grateful for that.

So please, if a treatment that someone is pursuing is giving them a sense of hope, let it be. It might be the only thing keeping them going.

Tuesday, May 26, 2009

Update and Next Steps....

I'm taking advantage of my fairly good mood so I can blog. The past couple weeks have been filled with a dark relentless depression. I wake up feeling okay but within two hours of taking Valcyte my mood plunges into the toilet. The depression in addition to the cfs has been crippling. Sending emails, making phone calls have felt impossible. When I'm like that I'm in the grips of Eeyore who's theme is "what's the point" "why bother."

Yesterday I paid close attention to my thoughts as my mood plunged and they were all focused on this illness. This is what the "blue meanies" tell me when I'm depressed: "you'll never have any improvement" "life is meaningless because I'm ill" "you'll never get better, have any peace, find acceptance, etc..." "you'll probably only get worse and end up bedbound" "you got sick because ultimately you're a bad worthless person who has no use in the world" "you have nothing to contribute anymore to why go on living" or "you're just a burden to everyone now." And the days are spent just trying to survive my mind. I haven't been able to blog because I didn't want to involve others in my pity party.

I realize some of this is part of the illness, some is Valcyte, and some is trying raise myself out of the ashes of my old life. I was reading something written by Emmit Miller, MD. He wrote a new book whose name escapes me now. But in the book he talked about the inner voice of healing. This inner voice can get trampled in the throes of trauma, depression, etc...I'm trying to reconnect to that inner voice.

I've been reading a little here and there from the book "Finding the Way Home: A Compassionate Approach to Illness" by Gayle Heiss. I'm finding it very helpful.

As far as updates I've been on Valcyte for 4 months and one week. I will be glad to finish this experience. In many ways it has been bad for my soul and spirit. I don't know what good its doing for me physically. The past couple mornings upon awakening I've told myself I'm taking a break from Valcyte but I get up and take it anyway just in case its doing some good.

Awhile ago I wrote a post and then deleted it (and then did the same thing again on Friday-another symptom of the depression) but Jo made a great comment about the differences between the UK and US regarding treatment for this illness. I saved it but have so many emails in my inbox because of all the groups I'm on that its a bit overwhelming to find it. I was struck by her comment and it has stayed with me but it highlighted for me how drug focused we are in this country about finding a medication to fix the unfixable. Forgetting for a moment the horrendous attitudes that take place in this country and the UK towards me/cfs one thing the UK has done correctly is helping people focus on pacing. Truly pacing is the only proven method for dealing with this illness. Cort Johnson mentions this in his reporting of the IACFS/ME Conference in Reno:

One of the poster presentations was by a man named Ashok Gupta who recovered from this illness. His was viral in nature. He developed a program called the Amygdala Retraining Program and runs a clinic in London. His theory is that the amygdala, a structure in the brain, is overactive and responsible for maintaining the symptoms of me/cfs. He has developed some powerful techniques to "retrain" the amygdala. I've decided to try his program. I really need some help in calming my overactive nervous system down and I think this can help. He says it can help 85% percent of patients. I've ordered the program and am looking forward to receiving it in a couple weeks. I will report on my progress with the program. He asks that one commit 100% to the program for 6 months. So that's what I plan on doing next.

For the past year I've been treating pathogens but haven't had a lot of improvement. Along with the Amygdala Retraining Program I will also consult with an ND to get my hormone levels back to normal. This is something my current cfs doctor seems to be weak on.

I've had enough of treating pathogens. The "you have to feel worse in order to get better" philosophy is getting old to me. I don't want to spend the rest of my life in a herxeimer reaction so I'm taking a break from chasing pathogens. No one knows what causes this disease much less how to cure it.

I want to stop the Valcyte. I think my body is telling me to. But, unless there is some indication not to, I will continue it for the next 54 days. If someone were to ask me if I thought they should try Valcyte I would say no (unless they were young). The data just isn't there to support trying this drug which causes horrible side effects. I did a rough poll of various message boards where people had tried Valcyte. I would roughly estimate that less than 30% have improvement. There are many other ways to treat HHV 6. Really though I think the body's nervous system must be calmed down and then work on building the immune system.

I feel a little hope today. Not because I'm going to be cured. I've given up on that (which isn't a bad thing). I feel hope because maybe I once again believe I can still create a life that is rich and meaningful.

Tuesday, May 12, 2009

International ME/CFS Awareness Day Today

On July 26, 2006 I was standing at a podium in front of a group of people defending my dissertation. On my committee sat three world renowned scholars in my field. Two of them have published books and have spoken all over the world.

After I was done with my defense there was a flurry of excitement as my committee made comments. Clearly they were impressed. Here are some of the comments: "You have an obligation to write and publish about your topic." "Would you consider teaching here?" "I think we need to consider having your topic as part of the core curriculum." "This dissertation should be published." "I would like you to be part of a book I'm writing." And so on...

It was a day of great joy, a wonderful feeling of accomplishment. I heard things that people who defend their dissertation dream of hearing. After all everyone wants to hear that their dissertation is considered worthy of publishing.

My life got really busy causing me to postpone efforts at getting published. I did a post-doctoral residency program 60 miles away at a large HMO outpatient clinic working 40+ hours, commuting, and managing a growing private practice.

In May of 2007 I was feeling bad physically. I ended up leaving the post-doc 8 weeks early because of this seemingly mysterious illness. I was losing weight. At almost 5'9 my weight dropped below 129. I was too thin, I looked grey and had dark circles under my eyes. I went through a series of medical tests to rule out cancer that runs so prominently in my family. But everything came back normal.

In Sept of 2007 I was leaning against the wall of Dr. Kliman's office. I was so weak that talking was an effort. I said to Dr. Kliman I'm scared something is really wrong and I don't want to end up in the hospital. His response was "we might have to hospitalize you to find out what is wrong." It was my first appointment with him.

On Nov 2, 2007 I was told what this illness was. I'd been referred to a rheumatologist to rule out lupus. I'd prepared a 5 page list which described my symptoms, the onset, family medical history. He read it then came into the office and somberly told me I had a "viral like illness" "a chronic fatigue like illness though the label chronic fatigue is demeaning" "You have a very serious and debilitating illness that is like AIDS but not-that is like Hep C but not."

Like many people I had a complete misunderstanding of this illness so I felt a sense of relief that I *only* had a virus and that it was chronic fatigue syndrome. Thank goodness it was *only* chronic fatigue syndrome. I'd thought I was dying my symptoms were so severe so it was a relief to find out it was *only* CFS. Little did I know that it wasn't I who was dying-only my life as well as my hopes and dreams.

So all I needed was rest right?

The doctor could tell I wasn't getting it. When his enthusiasm didn't match mine, I was confused. I remember thinking it's almost like he's telling me I had cancer. All I have is a virus. A cold is a virus and those last just a few days! What is going on? I said what do I do? He said there is no cure but I suggest you look into the clinical trials occurring at Stanford. I was puzzled. What is going on here I thought to myself. Something must have clicked inside on a deeper level because I asked the doctor: "What will my quality of life be like?" I have no idea why I asked this question but his response sobered me. "I don't know" he replied quietly. It was the quiet somber way he replied that got my attention. I still didn't know what I was in for.

By the end of December I was housebound and unable to drive more than a few miles.

This illness is not about fatigue although that is part of it. This is a case where that little story we would say "sticks and stones may break our bones but names can never hurt me" isn't true. This is where names can hurt. The name chronic fatigue syndrome is misleading because it doesn't even begin to capture the essense of this illness.

ME/CFS is a chronic debilitating multi-systemic illness. It affects the neurological, cardiovascular, immune, endocrine systems. Some people have problems standing upright, other's are completely bedridden.

I've gone from someone who was able to write a dissertation to someone who struggled to puts together to create this blog entry. I can't access words, I couldn't figure out how to get the ME/CFS badge on my blog post, I can't get at the essence of what I want to say. My writing skills are drastically different than what is written in my dissertation.

I have lost my career. I no longer have an income as I have exhausted my state disability benefits. I have been denied twice by the Social Security Administration. I've gone through all of my life savings paying out of pocket medical expenses in order to have a doctor who knows about this illness.

And then there is the emotional component. The grief of losing a life has been intense. The depression almost intolerable at times.

I feel invisible with this illness.

In 1993, Tom Hennessy, a man with ME/CFS created ME/CFS Awareness Day. He chose May 12 in honor of Florence Nightingale who was born on this day. She developed ME/CFS in her thirties and was housebound and bedbound until she died.

There is much work to be done-research is lacking and hugely underfunded. The public is misinformed. Many physicians still believe it's psychosomatic (the jerks).

In the next few weeks I'll be including links on what people can do.

I'm nursing a migraine again (another symptom of this illness) which has made it difficult to blog but I wanted to do at least something in honor of today.

Link to post here

Sunday, May 10, 2009

Accepting What Is

As many of you know I'm trying to figure out how to get to a place of acceptance. It graced my day on Friday. I felt more at peace about it while also feeling less fear. I've been plagued by an increase in heart symptoms which always makes me wonder whether or not I'm going to die of a heart attack. Instead of anxiety I feel more of a sense of curiosity. I'm having more consistent chest pain but nothing resembling that of an impending heart attack. It feels like the muscle in my heart hurts. That along with the increase in heart palpitations and what feels like a racing heart along with my left foot turning a dusky color when I sit have prompted me to find a new doctor who can refer me to a cardiologist. A year ago I would have felt really frightened but now I feel calm.

I went to the library yesterday which probably wasn't a good idea given how tired I felt but I'm glad I did because I was able to check out "Alchemy of Illness" by Kat Duff along with another book called "Finding the Way Home: A compassionate approach to illness" by Gayle Heiss. Both look very good.

I found this passage in "Finding the Way Home" (p. 142-143):

Accepting illness is a way of making it our own. It is a creative act, unique to each individual. It requires all the curiosity, imagination, intuition, commitment, and faith necessary to any other creative endeavor. We work with what we are given and use whatever tools we can find, often discovering we have many more resources than we thought. The act of accepting illness changes not only the experience of illness; we undergo a metamorphosis as well.

Flying without Wings is an account of Arnold Beisser's life since the onset of polio at age twenty-five. It left him paralyzed from the neck down and unable to breath outside an iron lung. Beisser had just completed medical school and won a national tennis championship when "without warning my body failed me. In a few hours I was transformed from a doctor into a patient, from an athlete to a cripple. Polio ravaged me so I that I could not move. I could not stand, walk, sit, eat, drink, or even breathe by myself."

Beisser continues:

My physical world had shrunk to the small room that contained my iron lung. My field of vision was limited to the ceiling and what was reflected in the mirror on my iron lung. In the evening, when the world grew darker, my world shrank further. I could no longer see the pattern on the ceiling, and the reflection in the mirror was dim. Not until two years later, in my fourth hospitalization, could I turn my head to the side enough to look down a corridor outside my room.

One evening, lying there alone, feeling particularly hopeless and bored, I looked down the corridor wishing for, perhaps expecting, someone or something. But I saw only the darkened hallway with a few doors opening into it. There was no activity, and there were no people to be seen. My despair mounted, and I felt as though I could no longer stand it. Then, slowly, I began to see variations, shades of gray and darkness, shadows and light. The doorways opening onto the corridor formed subtle geometric patterns according to the different ways the doors were ajar. I began to look carefully and wonder at this scene that only a few moments before had depressed me so. It now seemed startlingly beautiful. My perception had shifted, my eyes miraculously refreshed. This experience was full and whole. I looked down the hallway for a long time. I think that at last I probably fell asleep, but I a not sure.

I do not know how that perception arrived, or why it left, but from then on I understood that what I sought was possible. My task now was to discover how to change from one place to the other. (as quoted from Heiss, p. 142-143)


I thought that was pretty cool.

Mother's Day

I woke up this morning with a heavy heart. I couldn't quite figure out why until I realized today is Mother's Day. Even though my mom died over ten years ago I still miss her. Having one's mom die young has an huge impact especially on women.

She was a great mom and well loved. There must have been over 500 people at her funeral. Those short 44 days that she was sick and then after her death brought tons of cards filled with people describing her experience of her. I loved reading the stories people told about her. She made people feel like they were special in the way she quietly listened. She was thoughtful, introverted, and quite self-conscious about her hearing (she became almost deaf on one ear and had loss of hearing in another). She was deeply spiritual and was a devout though liberal Catholic. She loved arts and crafts. She lived her life quietly but powerfully. She was one of the first women to give a homily in the Catholic Church. She loved us deeply though it wasn't always expressed directly.

I learned a lot from her but not enough. None of us had enough time with her. She taught me so much in the way that she died.

Never in a million years would I have imagined she would die at 59.

I do believe she is still with me and at times I can feel her presence. I think she is as horrified by my illness as I am. About two months ago I was feeling particularly down to the point of making contact with the people at the Final Exit Network. That night I had a dream I was riding these really cool bicycles. I was trying to decide between two of them and kept returning to the bike shop in an attempt to make a decision. As dreams do, it shifted and I found myself standing at the checkout counter. My mom was standing right next to me telling me she would be waiting for me when I was ready to "check out." I have found much comfort in that dream.

This post is in honor of my mom. In the realm of the world that we live in I'm unable to tell her how much I love her and miss her. I can only honor her memory.

To those of you who are Mother's, I wish you a wonderful Mother's Day. Those of you who have mom's who are still living, treasure and cherish them and give them a big hug. I wish I could give my mom one more hug...