Wednesday, March 25, 2009


I've been feeling a bit guilty for not blogging much lately as well for the emails I have yet to send. I haven't been able to muster up the mental energy to write. Also, I've felt too depressed from the Valcyte and I just don't want to blog about depression anymore.

Today though, I've been given a reprieve from the Valcyte depression. It's nice.

I also see a little glimmer of acceptance on the horizon. So I have what my doctor calls "a profound case of CFS." It doesn't mean I can't have a life that I enjoy.

I've been doing a lot of thinking since my talk with my CFIDS doctor yesterday. I cried after the conversation and felt the heaviness of grief, sadness, and self pity sitting on my shoulders. I'm tired of that trio. I really am. While I think it's important to be with the feelings, at some point I have to say enough already. I'm also fed up with all the ways I beat myself up about all the ways I fail people because of this illness. I'm tired of wasting energy with these thoughts.

Being hit with this and having my external life taken away takes awhile to get used to. I've found there are no books on the emotional impact of having this illness but that's another topic.

I had a phone consult with my doctor. I'm 66 days into taking Valcyte. Last week I had so much fatigue that I had to cancel lunch with my sister. She was not only coming over but bringing lunch leaving me with nothing to do but sit and talk but I was too fatigued for that. I've also been having increased muscle pain. Not just achiness but pain along with cramp like sensations in the backs of my calves. The muscle pain was fairly intense. My doctor didn't know if it was from the Valcyte side effects, the cfids itself, or that the Valcyte is working on something. There are simply no answers. I won't know anything for six months.

I asked again what he thought the cause was and this time he said mitochondrial dysfunction. Prior to this his answers have varied from brain inflammation due to infections (bacterial, viral), toxins (mold). But this was the first time we've talked about the mitochondria. I'm aware of Dr. Myhill's recently published article. My doctor said some people have a chronic viral infection that damages the mitochondria-treat that and things improve. Others, have a hit and run infection that leave the mitochondria semi permanently damaged. He said the only way to fix that is "through stem cell therapy which costs $15,000 and you have to go to Mexico." I don't believe that's the only answer but who knows.

I think and fear that I fall into the latter category of a hit and run infection. My RNASE L was normal but the quantification was somewhat high. My NK test was normal (although it was run through Quest Labs which just reports a number and doesn't provide a panel. Quest Labs is good for testing for a few things just not NK function).

This is why I cried yesterday. If it's a hit and run infection, I have permanent damage to the mitochondria which is the most important part of the cell in terms of energy production. Also, a majority of mitochondria reside in the heart muscle which oftentimes leads to heart failure secondary to mitochondria dysfunction. Dr. Cheney believes that cfs is a way the body prevents the heart from failing.

So I turned my research efforts toward understanding mitochondria dysfunction. I spent a little time studying it today. The many supplements I took last year in an attempt to treat this failed but I was also living in a moldy toxic environment, hadn't treated lyme and babesia, and hadn't treated viruses. I started back on d-ribose (5 grams 3x daily) hoping this will ease some of the muscle pain and achiness.

What I was confronted with after talking to the doctor yesterday was the very real possibility that I might not get much better than this and maybe the only thing I could do was prevent myself from becoming bedbound. My true belief is I will get more functioning back but maybe not as much as I'd hoped.

I'm trying to come up with some ideas for how to live a life I'll enjoy regardless. I used to do stained glass many years ago. I'm finding myself really interested in starting that back up again. To do that I would need to take a class and get some new supplies. To take a class I need a little bit more energy.

I also need to figure out a way to get licensed or let it go completely. I may need to let it go because the process of getting licensed is quite stressful and takes a lot of energy. It's just that I was so close.

In the meantime I have to figure out how to get rid of a wasp problem that is preventing me from being able to sit out on the back porch and read. I swear these wasps are gunning for me. Everytime I appear they show up like bullies sending me scrambling to get back inside (which is hard to do when one doesn't have energy). They are building two nests right near the door. Today I thought I would fool them by taking out the garbage by going out the front door instead of the back. It didn't work though.

I think it's time that I claimed my sense of self back from this illness.


Renee said...

Wow, you have been given alot of information and so much to take in from your CFIDS doctor. I am so sorry. It is frustrating when we are at the mercy of everything and everyone around us and seem to have no control over these illnesses. I just read in Bruce Campbell's advanced class this statement>.."CFIDS is in control" and it really bothered me...caught me up short actually... I am trying to remind myself that Lyme may have my body, but it cannot have my soul. It is hard hard to keep trying so darn hard to work at getting better and not see any progress. You have had alot to deal with..the mold, Lyme, etc. With all the testing being done, do they retest for Lyme to see if it is back again? I have heard that story so many times...they get better for awhile and then symptoms come back?
Please know that you are in my thoughts and prayers for all that you are dealing with right now.

Jozephine said...

Hang in there! A year or two ago I was told if I had FMS/CFS there wasn't much they could do for me. I wish these doctors could feel the effects such pronouncements have on a person.

Like you I was searching for a cause thinking if I could find the reason I could find the answer. The answer for me lay in acceptance, focussing on the here and now, and finding a doctor who was going to give me hope.

There is a lot you can do to help your body heal through nutrition, resting and pacing of activities - whatever the cause. You need a therapist to work with you. Yes, we may never recover completely, but there is, as you say, light on the horizon.

I recommend John Kabat-Zinn's book 'Full Catastrophe Living' as a starting place. Get the CD as well.

You will get past this, I know you will.

Pris said...

Such a struggle but never give up. I'm still quite disabled, but improved tenfold since this first hit me . Can I go out and do past things? No. Was it hard to give up biking and sailing? Excruciating. I tried to keep up with my annual required C.E. courses for my Clnical Psychology license by at-home work, but had to give that up. Couldn't concentrate. Finally, after five years and so far behind in the C.E. credits I finally said uncle and gave up my license, too. So many frigging losses, yet life has taken me in another direction..poetry, graphics, online friends, finding out which 'in live' friends were real ones.

Pacing is indeed important. Hang in. I'm thinking of you.

Sue Jackson said...

Terri -

Good for you, to be talking about acceptance and enjoying life! I know you've been through a terrible time, but hopefully, things will begin to improve soon. I hope that your severe response to Valcyte means that it will work for you and bring you some relief eventually. Are you still on Lyme treatment as well? I recently had to restart mine - getting through these herxes is torture, isn't it? Thanks for your support and encouragement recently - it's been a tough couple of weeks for me, and your support helped.

Hope you are able to enjoy the weekend.


JoWynn Johns said...

When I collapsed 17 years ago, there was no diagnosis whatsoever, much less any treatment. I was very much sicker and less functional then. Though I am still very limited, I feel much better and I'm able to do the things that are my highest priority, having let go of everything else. There is reason to hope that you can have a fulfilling life, especially since you are determined to do so. Keep on. You're going in the right direction.

Debbie Anderson said...

I consider myself very lucky that my liver will not allow me to take any of the drugs used to treat CFIDS. For 15 years, I did everything and took anything a doctor prescribed. Then my immune system crashed so badly I had to learn to walk and talk again, and this was in my 30s. I didn't smoke or drink or eat sugar and it still crashed.
Now,I don't go to a doctor. I listen to my body. If I want to have something that is supposed to be bad for me, I have it. And I am a lot better than I was.
I know just when I've been doing too much and am heading for a crash. When that happens, I go off by myself and rest, take baths, sleep when I am tired, and keep myself busy with making of jewelry or soaps when I can't sleep.
I have learned to change my priorities,such as making jewelry (which is relatively passive instead of doing more physical things)
I have learned to stay away from toxic people and situations.
I have learned that as long as I get a job done (ie housework,) it doesn't matter how long it takes as long as it gets done.
I have learned that I can no longer be reliable to anything else, unless I am willing to die for it. Most things I don't want to die for. There have been a few times when I've had to make that choice, and I must have a good higher power, because I always manage to "go to ground" before I completely collapse.
CFIDS is not in control. It may change our direction. WE control how we respond to the new direction.
There is hope, but you have to let go of your old expectations, and follow that inner sense inside of you. I have faith that you will triumph.

cfswarrior said...

Hi Renee-

Thanks! It was a lot to take in. I will most likely get retested for lyme once I finish Valcyte on July 19.

Thanks so much for your prayers and thoughts. You continue to be in mine also.


cfswarrior said...


Thanks for your words. I'm really working hard at accepting this new reality.

I like what you said about acceptance and finding a doctor who will give me hope.

Thanks for the book recommendation. I'm going to get it from the library.

I need to let go of trying to find the cause.


cfswarrior said...

Hi Pris-

Thank you for your comments. I think I will be letting go of trying to get back into the field again.

In reading your blog I know how important sailing was to you.

It's very good to hear that it's possible to have some improvement. At the very least it's good to hear that it's possible to have a life I can enjoy.

Your poetry is wonderful.


cfswarrior said...

Hi Sue-

Thanks! I hope the severe reactions I'm having means the Valcyte is doing something.

I finished treatments for lyme in either October or November. The herxing is really a tough experience. I'm so sorry you are having to go through it again.


cfswarrior said...

Hi Jo Wynn-

I always enjoy hearing from you. It gives me hope to hear that you also have experienced improvement such that you can enjoy your top priorities.

Thank you for providing hope.


cfswarrior said...

Hi Debbie-

Thank you so much for your comments. It's a good message about acceptance and what I needed to hear.

I like what you had to say about CFIDS not being in control. It only causes a change in direction.

I hope you post more here!