Wednesday, November 5, 2008

Preparing the Ground

I spoke with my doctor this morning. He was puzzled once again at my test results. He thought for sure the RNase L panel would confirm for him that I have an active viral infection. He said "the test says you don't have an active viral infection but I don't believe it." Great. Then why did I have to pay $445 for it. He said some sort of inflammation is causing the RNase L Protein Quantitation to increase. I asked if mold can do that-he said yes.

I created a grid with my symptoms, lab results, environmental factors to try to figure out how much of my illness is due to lyme, mold, and/or viruses.

Based on the petri dish results he thinks mold is a problem. Since I have the double barreled shotgun of not only a multi susceptible genotype but also a mold genotype, it makes mold toxins a poison. I can't remember if whether I wrote about it or not but I've brought up the possibility of mold toxins the first time I saw my doctor back in April, 08. He dismissed it as a factor because neither one of us was having allergies. Well, I have since learned that mold poisoning and mold allergies are very different. An way, he gave me some petri dishes to put throughout the apartment, a rough experiment to see whether mold is a factor. He explained the directions and said if there are more than 5 colonies in the petri dishes, that indicates a problem.
There were anywhere from 16+ colonies to 45. When my doctor heard that he was shocked.

He said that my body won't be able to heal as long as it's being exposed to mold like this. We don't have the results yet from Mould-Works to see whether the mold in the walls is indeed Stachy (the toxic black mold). Regardless, the toxins need to get out of my body. They are wreaking havoc with my central nervous system. My doctor said his mission is to find out what is causing the inflammation in my body. He also said the weight gain is from inflammation and no matter how much I exercised or how little I ate that this would be a problem.

So the next part of my healing journey is to find another place to live. And quickly. My question is okay so that's the next step. In the meantime my SDI runs out in December and I haven't been approved for SSDI. I also need medical care.

Never in my wildest dreams did I expect to be facing anything like this. I worked hard dedicating myself to be in the service of others. It's where I found my sense of meaning. I ran community mental health programs. I was the director of the North Bay Homeless program, residential program, case management program, and transitional housing program. I worked my butt off for my PhD.

And look what happened. Sometimes I go numb with the shock of it all. It goes to show that there are no guarantees in life. There just aren't.

At bottom though is that my body needs a place where it can do some healing. I've got to get the toxins out of my body. Then we will evaluate for antivirals. I asked my doctor about taking an antiviral now. He basically said it would be pointless as long as my body is exposed to the mold.

In the meantime, my central nervous symptoms continue to progress. My autonomic nervous system is having problems resulting in some symptoms one of which is feeling like I want to faint sometimes after standing up. It doesn't hit me right away. It can hit later. He explained something about blood vessels. I went blank as he was talking. This is something I didn't want to have happen. My illness is progressing. In addition to the autonomic nervous system dysunction (there's a good website called National Dysautonomia Research Foundation) I'm having increasing sound, smell and vibration sensitivity.

Stachybotrys is a greenish black looking mold. This is what I found behind the peeling plaster in the part of the wall (I can't remember what it's called). I just hope it's not Stachy. If it is I'll have to vacate immediately, even if that means living in a tent.

Even though I'm overwhelmed at the though of moving and it's the last thing I want to do the truth is I don't like this apartment. It has never felt right. I remember when we looked at it. We were standing in front of the living room window. Something didn't feel right to me. It's nothing that I could explain logically. I remember saying something to the effect of not wanting to move in but it had everything we were looking for at the time. I think one lesson in this is for me to listen to that small voice that says "not this or not that or yes this." It's that wise part of us. It might be God speaking every so silently in the inner recesses of the soul. I believe that there is a God who wants very much for us to heal and live a full rich life. We just have to get quiet enough with ourselves to listen. Or at least I do. I just didn't want to hear what was being said.

I don't think moving will cure me although if it did I would be ecstatic. I think it will give me back more functioning maybe just 10%. But moving will give my body the necessary healthy soil it needs to start doing some healing.

Last night though was something. Watching Obama get elected was deeply moving. I cried with tears of hope at his election. I still cry when I see it on TV. It's truly amazing. I'm glad I got to witness it. I wanted to hear the words as they were being spoken on TV.


Sue Jackson said...

Wow - new data! Amazing about the mold - I know you've suspected it's a problem for awhile. Moving won't cure Lyme or CFS, but getting away from that mold can only be beneficial to you and maybe help you improve enough that it's easier to cope. Then you can move onto looking into additional treatments and/or a new doctor maybe. Interesting that someone else recommended the Holtorf group the same day I did!

I have new admiration for you and what you're going through. I've been mostly bedridden this past week - so sick I couldn't do anything at all. That kind of debilitation for that long is rare for me these days. I'm seeing my doctor tomorrow to discuss whether we should be doing something more for the Lyme - I've really been blown away by how severe this herx has been, when I thought I'd gotten rid of it completely.

Well, I'm rambling now. Glad to hear you have a new approach to try - good luck finding a great new mold-free apartment quickly!


Renee said...

I am so glad you are getting answers from your doctor concerning the mold and inflammation, etc. and that you are able to work out your own grid to figure things out. You will be in my thoughts for the move you will have to make.
I stayed up late to watch the election results and speeches too. It moved me to tears also to see so many people so excited, so hopeful for our country and what it means to each of us.