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.


babybuddhalover said...

Keep hoping and fighting- You are an inspiration Terri!

Daphne said...

You are completely inspirational and a model for keeping up hope in the face of scary stuff. I so admire you and your strength! We are going to beat this damn thing!

John Davis said...
This comment has been removed by a blog administrator.
Hip said...

Interesting that you say you experienced weight gain mainly on the stomach as a result of your CFS.

I caught a nasty virus several years ago which has produced a number of symptoms that fall into the CFS category; this virus also caused precisely this type of abdominal weight gain on me too.

The other symptoms this virus caused include: severe fatigue, sleepiness and sudden powerful urges to sleep, significant memory problems, anhedonia, loss of verbal skills and spelling abilities, weak legs, strange skin wrinkles, sudden onset of periodontal disease, chronic congested nose, constant sore throat, and several other symptoms.

I think this nasty pathogen I have may be a new virus, or possibly a more virulent strain of an existing virus.

For more details, see my blog here: http://chronicsorethroat.wordpress.com/