Friday, September 12, 2008

Two Good Things that Happened

I've been feeling so poorly the past couple days that I haven't had the energy to write.

Tonight, sitting up while eating was a bit challenging I was feeling so dizzy and a bit faint.

I had two really nice things happen. I sell used books on amazon to make a little extra money. It's badly needed. This is an expensive illness to have and I'm paying for all my medical expenses out of pocket because insurance won't cover it.

Anyway, last week the mailman (he is a man) left a large box on the doorstep. It was an amazon box. I was puzzled because I hadn't ordered anything from amazon. Then I became alarmed that someone had stolen my identity again and made a big purchase (this happened in December-someone used my credit card to purchase $500 worth of DJ equipment). I brought the box in and opened it. To my surprise, a friend of Beth's had sent me a box of books! I started crying because I was so moved by this gesture. I loved the books and put a couple aside to read myself. I just love opening a box of books and looking over each book and skimming through it. So it was a wonderful thing to get.

Then Tuesday night the doorbell rang. I thought it was either neighbors or someone selling something. Most days I don't feel well enough talk to people. The doorbell rang again about 10 minutes later. I panicked a little thinking maybe there was a family emergency. When I opened the door there was a boquet of roses and my two friends Sharon and Tommy whom I worked with a few years ago. I love these two people. We worked together in a difficult environment with a crazy boss. We all have a strong bond with each other and even though we don't see eath other much they are never too far from my mind. They stayed for about an hour. It was great. We talked politics, and laughed. They are both great people and I'm lucky to have them as friends. They check in regularly via email to see how I'm doing.

I'm also lucky to have a couple good neighbors. When they found out that Daphne was going to be gone for 5 days they offered to check in on me. It was comforting to know they were around and all I had to do was knock.

My perspective gets skewed when I feel this bad. I read this great quote recently:

Courage doesn't always roar. Sometimes courage is that little voice at the end of the day that says: "I'll try again tomorrow."

Tuesday, September 9, 2008

Do I Dare to Hope?

I had my monthly phone appointment with my doctor yesterday. I spent the afternoon preparing-reviewing my symptoms, going over my labwork, etc...I had a 3 page list of questions. One of them was will I ever be able to return to work. He said yes-that eventually I'll be able to "slowly ease back into work." I jokingly said "I just will never be able to go running again." He said well not now.

I have a bit more understanding of what is happening as well as more of a treatment plan which feels good. I have a lot of inflammation in my body. The MMP-9 (Matrix Metallopeptidase-9) is activated by cytokine effect; cytokine effects are activated by biological toxin activity. Any result over 400 is cause for concern regarding active delivery by MMP9 of inflammatory elements from the blood into tissues including joint, nerve, muscle, and brain. It can flare in a herxeimer reaction. Mine was 739 which is quite high.

There are different lab tests to test for inflammation. MMP-9, C-Reactive Protein, C3a and C4a complementary protein. These all measure different types of inflammation. My C4a was fairly normal.

My doctor said I have a lot of inflammation in my brain still which is creating all sorts of problems. The way to reduce the inflammation is to remove the triggers to the inflammation. Right now we're working on eliminating the infections and addressing all the hormone imbalances.

I asked him why I'm gaining weight even though my appetite hasn't changed much. I actually don't care about the weight gain at all but it seems to be centering all in my tummy and I wanted to make sure it wasn't anything else. I don't eat much other than the fat I have to take with Mepron. He said it has little to do with how much I eat but that my brain isn't working right because of the inflammation. My brain has put my body in emergency response mode so it's telling my body to save all my calories.

Since I have the gene that makes it difficult to get rid of toxins as well as make it difficult to get well I asked what else can I do for getting rid of the toxins. He's going to put me on something called Cell Therapy. It's similar to stem cells except that it's fetal bovine/sheep cells. It's supposed to reactivate certain genes. With chronic illness sometimes the body gets stuck in a certain mode and the genes have to be reactivated. This will help. I'll have to inject it into my thigh for 6 months.

I'll be injecting myself twice a day with methyl B12 and Cell Therapy.

There's also a new therapy called BEEMER. I can't remember what it stands for so I can't find any information on the internet but it has to do with magnetic resonance and getting the blood to flow into brain, heart, lungs. It also helps with detox and is supposed to increase energy. If I don't notice any result in 2-3 weeks then that means it won't work for me. I'll have to pick this up from his office so I won't start on that until my next appointment.

We're also going to try IV mineral/vitamin therapy to see how I respond. It lasts about an hour. This is something I'll do when I go see him in October.

In October I will also be trying a neural trauma therapy. I can't remember what the name is but it involves injections into the sites where I've had surgery. I can't remember why now.

For viral infections he wants me to use Argentyn 23 (a medical grade colloidal silver). It also gets at bacteria including lyme.

Later on we'll test for chlamydia pneumonia and mycoplasma infection.

I'll also be adding progesterone and testosterone to address those low hormone levels.

I'll stay on Mepron/Clarithromycin for at least another month. He might add in a new antibiotic after that-possibly Bicillin which is injected a couple times per week to get at the rest of the lyme.

My adrenal insufficiency is probably causing my blood sugar to drop so he doesn't want me to stop the cortef.

He said he thinks at the end of all this "we'll probably end up with something viral." I don't know what the treatment will be but that's down the road.

I told him I was worried about viral myocarditis. He said that is probably at play here. Immediately my anxiety went up and I asked if that meant I would go into heart failure. He said no and then explained the symptoms of heart failure. He also said that the myocarditis should get better. It explains some the dizziness. I'm a bit more accepting that this is part of what's going on. I just want it to get better. All it really means is that my heart is inflammed. But, that just doesn't sound good.

I'm pulling out all the stops to get well. I think it will happen. I don't know how long it will take but I'm going to do it. My doctor was outraged I didn't get approved for SSDI-that felt kind of good.

My New Treatment:

Mepron 1 teaspoon twice a day
Clarithromycin 500mg twice a day
Argentyn 23-1 tablespoon 3 times a day
Cell Therapy-Injection 1 a day for 6 months
Cortef (hyrdrocortisone) 5mg (adrenals)
Pantotheic Acid (adrenals)
Adrenal Cortex Glandular 1 pill twice daily (adrenals)
Armour Thyroid 45-60mg
Methyl B12 Injection
BEEMER twice daily (starting in October)
IV Vitamins (October)
Neural Trauma Therapy Injections (October)
Continue withe Methylation Protocol (Folapro, Intrinsi B12/Folate, General Vitamin Neurological Health Formula, Phosphatydil Serine Complex)
Doxepin (for sleep)
Klonopin (for sleep and brain inflammation)
Gabapentin (for nerve pain though I don't need this anymore)
Progesterone 1 pill at night
Testosterone (I forgot how much)

I also add in Acetyl-l-Carnitine, whey protein, vitamin b liquid, lots of fiber, lots of water, and 2 grams of vitamin C.

I have discovered that sometimes it takes courage to hope.

Thursday, September 4, 2008


I've been feeling very edgy, anxious, and just plain weird today. It feels biological. I had trouble sleeping the past two nights which is concerning. The doxepin has worked very well for my sleep. I only take 9 drops but I'll increase it tonight. My brain fog has increased as well as the dizziness. It could be from the Mepron.

Yesterday I went to the podiatrist again. He said my toe looks good but to pay attention to the pain. Hopefully I won't have any more incidents with it. I have curvy toenails so it is easy for them to become ingrown. If anything else happens I'll need to have the toenails of my big toe removed. Yikes. That sounds really awful. Weird things go through my mind about it. Things like what if I have to have the toenails removed (just my big toes) and everyone goes fine. Then what if later I get dizzy and look down to see missing toenails and then faint.

The podiatrist injected kenolog, which is a corticosteroid, into the base of my big toe where a 9mm cyst had formed. Steroids are really bad for lyme and cause it to move deeper into the tissues as well as become more disseminated. I needed to do it though because the cyst would keep growing and would eventually interfere with my ability to wear shoes.

I've been on Mepron for 25 days now. I think it is helping though today feels like a setback but could be do to the injection.

I saw another healthcare provider this week who I swear was stoned. I'm sure I smelled pot. Very weird and confusing.

Since starting treatment I think I've had about 20% improvement. It's not a lot given that it's been 4 months now but I'll take it. It means I'm operating now at 45% on a good day. Again, not much but it's better than it was 6 months ago.

I feel stuck on what to do next regarding treatment. I can go see another specialist who is nationally known and get a second opinion or stay with who I'm seeing (though everyone I know who sees this person wants a second opinion for some reason). But it means forking out a lot of money for a consult. I also don't know if I should push for trying to go on an antiviral while also treating babesia.