Tuesday, December 2, 2008

Wrong Place Wrong Time

I spoke with my doctor today. This was the first conversation we've had since I got the mold report. He's a very laid back doctor who usually isn't very firm about things. Sometimes it has driven me crazy because I want someone to say this is what you need to do now. He's a good doctor though-very kind, intelligent, and listens well. I was expecting the same sort of "it might be a good idea if but maybe not" sort of response. Instead I was surprised when he said "you need to move as soon as possible."

I'd been minimizing my shortness of breath to him. It hasn't been my most pressing symptom and I just considered it something I just had to live with even though at times it's been hard to talk on the phone because of it. Lately I've noticed it's worse when I wake up in the morning. It's now accompanied by some coughing. I told him about it. He thinks it's from the mold. In fact, he thinks my cfids was triggered by the mold exposure.

I'm to do salt, baking soda, and Agrumax nasal rinses twice a day to get rid of any mold growing in my sinuses. I'm trying not to think that there might be mold growing inside me. It sounds like a bad science fiction movie. I also have to start glutathione nebulizing treatments. This will help reduce the inflammation in my lungs. He said the nebulizing treatments will be really helpful for my sob (shortness of breath). But I have to go to Santa Rosa for my first treatment because one out of twenty people have some sort of asthma like reaction and they like people to be in the office if that happens so they can treat immediately if necessary.

He also recommended getting Hepa Air Purifiers (or filters?) to deal with any cross contamination of mold spores. We're doing all the right things though. Washing all clothing. We have to get rid of the bed. He said to stay away from any synthetic mattresses, especially the memory foam ones. The off gassing is way too toxic for my body to handle right now so he's recommending a natural latex mattress or something like that. He also said to "trust your nose." If something smells bad or musty-get rid of it. Also that I will pick up mold odors more than other people right now so don't even question if something smells funny.

I told him that the cholestyramine is helping my cognition. He said "great!" I said " do I still have to take Valcyte?" Slight pause. "Yes, you do." Shoot. I don't want to take that drug but I will. He wants me to start as soon as I can but given that we're moving it's okay to wait a little while longer. The side effects can be really serious so I'll have my blood drawn weekly for the first month and then every other week for the second month. "After that we can relax" says my doctor. Apparently 50-60% of people who take Valcyte have a positive response. It takes 6 months or longer to feel it though. And, of course, you have to feel worse before you get better. By month 3-4 if I'm not feeling worse it means it probably won't work for me. So I guess I have a 50-50 chance of having improvement taking this incredibly toxic drug.

He does think I'll have some improvement upon moving though so I'm looking forward to that. Unfortunately the Valcyte will erase the improvement. Who knows though.

We did decide to ask the landlords for some money for some of the expenses we are incurring. A partial list was provided to them. They responded right away but the guy said he's only 7/8's owner so he can't make the decision but will talk it over with the primary owner. I thought about drafting another letter with the CA mold law attached as well as reminding them that we will get a lawyer if necessary and that the list did not include almost $10,000 in out of pocket medical expenses. Not to mention lost wages. The little amount we are asking for is nothing in comparison. We have a mold report, an MD who has said my illness was triggered by the friggin mold, receipts, and proof of 3 major water leaks. Not to mention the mold found on the boxes of my grandmother's dishes, or the mold found in the baskets in the kitchen. I get pretty angry when I think about it. All this could have been avoided if only... I refuse to live in that place though. It's pointless. The fact is this is what's happening. These are the cards I've been dealt. It's not fair. But then who said life was fair?

I refuse to let this win. I know I'll have down days and will come here to talk about it. But it doesn't mean I still won't have meaning in my life. My life has been devoted to the Soul. That devotion will continue. Even if all I can do is blog about it.

6 comments:

Renee said...

I am so sorry you are having such health problems from the mold. Thank goodness you know now and can get out of there and do more to recover as much of your health as possible.
Wrong place ~ wrong time...
It stinks, doesn't it. That is how I feel sometimes about getting bit by a tick so many years ago..I was not even the outdoor type! I think it came from mowing our yard because Joel was reacting to the poison ivy in our yard.... Lots of ifs come into play, but you are so right ~ acn't dwell on the past...need to live the best we can today...and do what we can to improve while at the same time accept where we are at. A fine line to balance, I used to think. But after reading another bloggers' thoughts on it I have decided that acceptance and hope really walk together. acceptance is a step needed to keep hoping?
I have never heard of a latex mattress before. Learn something new all the time.
Take care
Renee

Anonymous said...

Hi Terri!

The in-laws left yesterday, so I am now getting caught up! Just wanted to offer our "bed and breakfast" again if you need to get out of that moldy place sooner than next week. Your room is ready and waiting for you!!

I am praying that this move will finally be the catalyst that will get you feeling better!

Love you,
Cathy

Anonymous said...

Hello,

I am new to this blogging thing. I am searching for everything and anything related to Valcyte for EBV and HHV6. I am so nervous about taking this thing. Do you know if the EBV can cause the cognition problems or is it just the Lyme? Thanks...

cfswarrior said...

Renee-

Thank you. I so appreciate "getting to know you" via blogging. I really like what you said "acceptance and hope walk together." I think it's true. I'd never heard of a latex mattress before either. I still don't understand them.

Terri

cfswarrior said...

Hi Cathy,

I hope you get a chance to relax this week. I think I'm seeing you this weekend or next? I can't keep up with everything.

cfswarrior said...

Anonymous-

HHV-6 can cause cognitive problems. I think EBV can as well but that is less documented. High levels of viruses in the blood can cause thick blood, poor oxidation, and bad fatigue all which affect the ability of good blood and oxygen flow to the brain. Do you have HHV 6 as well as EBV? If you have EBV only, Valtrex might be a better choice. Feel free to ask more questions.