Saturday, January 17, 2009

Robins, Deer, and Door Number 2

I'm behind in blogging. It's been an interesting 10 days or so. I hesitate to say this-it's like tempting fate, but I don't feel that crushing fatigue that I did after moving in here.

I would say that I'm back to where I was prior to the move plus 5-10%. It's also been very sunny and uncharacteristically warm. I'm noticing that my illness fluctuates with the weather. For an interesting read on barometric pressure and its influence on those with chronic illness go to this link: (see barometric pressure). It's quite fascinating. People who have suffered from mold poisoning also find they respond to fluctuations in weather. The theory being that changes in barometric pressure allows mold spores and mycotoxins to be released into the air.

On Weds I decided to go for a drive to the local cemetery. It's very beautiful. Instead of feeling peaceful I began to get filled with anxiety as I navigated an unfamiliar road that seemed to be leading away from the entrance rather than toward it. The cemetery was closing at 5 and I feared I'd get stuck in the back roads. Not that I was very far from the entrance-maybe a couple miles. Far enough so no one would notice if my car broke down. I kept driving-the road was too narrow to navigate turning around and the last thing I wanted to do was damage a gravestone. My anxiety was bordering on panic which made no logical sense. I had my cell phone. I kept driving and suddenly stopped my car. About twenty feet in front of me were 4 deer stopped still in there tracks waiting to see if I was a predator. They were beautiful. I love deer as well as their symbolism. All 5 of us waited for the others to make their move. I sat quietly in my car softly whispering to them that it was safe to continue on their journey. And that's what they did. And I knew everything was going to be okay. It felt like a gift to see all 4 of them standing there.

And where I live there are these beautiful Robins that keep coming by and sitting on the tree outside the window. On the back porch hangs a hummingbird feeder where I can sit outside, read, drink tea, and watch for the hummingbirds.

I spoke with my cfids doctor on Thursday. I thought my appointment was Friday so I was both surprised and unprepared for his phone call. We talked about the available treatment options for me at this point, my lack of money, and what was feasible. He still thinks I need to take Valcyte. He said out of everything out there right now this is the one that might be the "homerun." He said everything else might be a base hit. So I'll start Valcyte on Monday. I'm just going to do it. It's not a guarantee by any means. Trying to treat this illness feels almost like the old gameshow where people would have to make a choice between three doors hoping they don't get the "booby prize." I'll choose Valcyte and hope it doesn't make me worse.

I talked to him about antidepressants and the doctor appointment I had where the doctor wanted to diagnose me with MS or some other slow virus. He was appalled when I described what happened. Unfortunately he didn't have any recommendations for me.

We did have an interesting conversation about death. I wanted to continue it but I was paying by the minute. I told him about Dr. Kliman and that I'd hoped his death wasn't as horrible as it sounds-to die alone in an elevator shaft. Ugh. It makes me so sad. My cfids doctor said he's seen some amazing things. People, when they realize they are going to die, might get fearful for a little while but that is soon replaced with an entry into another world that is beautiful and peaceful. He said he's witnessed this many times. The picture I have on this blog is a woodcut made in the 17th century and is of someone entering another world.

I think it's possible for those of us with chronic illness to enter into this place.

My doctor also said there is a new treatment about to be made available to doctors. It's some sort of stem cell signaling factors. I've been injecting myself with this thing called Cell Therapy for the past 4 months but it hasn't done a whole lot. I'm hoping the new treatment will be helpful. I know Dr. Cheney was working on something like that with pretty good results.

I started on Amantadine which is an antiviral and also a dopamine agonist. Dopamine levels can be low in people with cfids. It's also used to treat fatigue in people with MS. We'll see. Hopefully it will help.

I started the self help course on Monday the 12th. I don't know what to think of it as nothing has happened but introductions. I think I was expecting it to move at least a little bit faster.

I sent my introduction email to the wrong place. I was a bit surprised at finding out where it went. I guess they are used to cognitive slips. I'm sure it didn't help much when I sent another email telling them I also gave them the wrong address so who knows where the book will end up.


  1. Hello,
    Have you looked at the Marshall Protocol. I began it in June 2008 and my CFS resolved by December. I also have other ailments which are still present but are resolving steadily.

  2. Keep us posted re how the antiviral works. Was pleased to hear you're feeling better.

    And Lee, what is the Marshall Protocol? I'll try googling, too.

  3. Hi Pris-

    I'll keep you posted on the antiviral.

    I too am glad to be feeling a little better. Thanks for your well wishes!


  4. Lee-

    I've read a little bit about the Marshall Protocol but will also have to go back and google it.

    I'm glad to hear you had success with it!


  5. Hello,
    The Marshall Protocol is a multiple antibiotic treatment for the so-called autoimmune diseases including CFS. It was created by a Phd molecular biologist named Trevor Marshall who cured himself of Sarcoidosis. The treatment is no joke or fad and sticking to it is not for the faint of heart. His discovery which runs counter to most existing research is that these autoimmune diseases are caused by intracellular bacteria which are near impossible to culture or test for and equally difficult to treat. His discovery states that disregulated vitamin d levels between the inactive form d,25 and the active form d 1,25 levels in a blood test will more times than not reveal evidence of the disease.

    I suggest you read all you can at the website to learn what you can and to determine if you are prepared to make the hard sacrifices necessary to get well. The cure is harder than the disease but I personally was not willing to watch myself on a slow, steady decline to being permanently disabled.


  6. Hi Lee
    Antibiotics make me deathly ill. Literally. That simply isn't an option for me. It's more than a matter of being unwilling to make a sacrifice. Tons of side effects that make daily living a nightmare. I've not declined. In fact, I've been improving over time, so...I think this says more than anything that different things work for different people.

  7. Hi Lee-

    I did some research on the Marshall Protocol and found some very disturbing information. Some people have reported horrible side effects from this protocol. Also, Dr. Cheney advises against it.

    Although all protocols and new treatment carry an element of risk, the amount of people reporting adverse and even life threatening effects from this was too difficult to ignore.

    It isn't a matter of be willing to make a sacrifice in order to try this partcular protocol. I think everyone with this illness has made huge sacrifices in an effort to achieve some improvement.

    I know I have already made huge sacrifices.

    I'm glad the treatment has worked for you.