Thursday, May 22, 2008


I've officially started treatment. I took my first dose of Minocycline about 30 minutes ago. This will treat any lyme issues that may exist. It turns out this antibiotic is also used for rheumatoid arthritis and may help with any mycoplasma issues. I'll start with 100mg one time per day because the medication causes dizziness. By Monday I'll take the full dose of 100mg three times per day. If I have lyme I should start herxing by next week.

It turns out the doctor's office forgot to send the anti babesia herbs. I had a feeling so I called them yesterday. Luckily I don't have to wait for the herbs to start the antibiotics.

By mid-summer I'll know if this is the right course of treatment.

Yesterday I was able to convince my primary care physician to order a bunch of non standard bloodwork, something he has resisted in the past. He's your standard HMO doctor who doesn't like sending one out to do tests because HMO's reward doctor's for saving them money. Anyway, I had to get clever and do some name dropping. I felt guilty because he bought it and it worked. It's the truth what I told him. There may be another clinical trial in the works and I might qualify. And they do need these other tests to be done. There are many things that are important to test for when having this illness. Thyroid, poor adrenal functioning, HHV-6, cytomegalovirus, hormone testing, parvo virus B19, mycoplasma pneumonia, Epstein Barr virus, chlamydia pneumonia, and enterovirus. HHV-6, parvo, CMV, EBV, and others can cause viral myocardititis. My doctor agreed to test me for HHV-6 (retest), CMV, Parvo virus b19, a host of Thyroid tests, all my hormones, and fibrinigen for hypercoagulation issues. I already know I have hypercoagulation issues because my sedimentation rate or ESR is only 2. Hypercoagulation gets treated with heparin. I can't remember what causes the blood to get thick but it's not good to have.

I went and got my blood drawn today. It was only 7 vials of blood.

I also was able to get a referral to physical therapy for my shoulder. It was a bit ridiculous though. Here is what a typical conversation with him (my primary care doc) can be like. I'm telling him my shoulder is worse. I can now barely use my right arm because the movement is so restricted. My doctor SHOULD have referred me for an x-ray to rule out a torn rotator cuff but he didn't. Last time I met with him and told him about the pain and stuff he said something like let's not get all up in arms about it (no pun intended). I definitely under report to doctor's. It's a superstitious thing like if I tell the truth then it will make it real. I remember prior to back surgery when it was clear how bad my back injury was ( so bad the doctor from Kaiser tried to talk me out of defending my dissertation and actually wrote a letter to my committee saying I had a serious back injury). Anyway, I was in physical therapy prior to surgery and the physical therapy asked me to rate how much pain I was in using a scale from 1-10 (10 being the worst). She had me in traction at the time. I thought about it for a moment and then said I think about a 1.5. She started laughing and said I was of the patients who most under reported pain.

So yesterday I'm telling the doctor that my shoulder is worse (I can't even reach across my body to soap my other arm). Here's the conversation:

Me: Oh, my shoulder has gotten worse since the last visit.
Doctor: You didn't go to physical therapy?
Me: No. Um, I didn't get referred.
Doctor: You got turned down by the insurance company or you never followed through?
Me: I never got a referral for it.
Doctor: So you never followed through.
Me: No. I never got the piece of paper to follow through with. I, um, I never got the referral.
Doctor: Sigh. Well, we'll just have to do this AGAIN.

I'm like-actually you told me not to worry about it and now I can barely use my arm.

I'd like him to try and live in my body for 24 hours.

I'll be glad when I'm well enough to travel so I can switch to another doctor.

I have to write down a schedule for taking medications, herbs, supplements.

I have to take the adrenal supplements on an empty stomach. The Minocycline can't be taken within 2-3 hours of magnesium/calcium, dairy or probiotics and will have to be taken 3x daily.

It's been nice to be free from the bad anxiety and other cognitive issues that go along with this. It's also nice to be able to sleep a bit more thanks to the doxepin.

1 comment:

  1. Yay, doxypin! I hope we see some results from the mino soon. It's so exciting to be starting a course of treatment! Keep posting, it's so good to hear it from you, what's going on in your heart and mind through all this. I love you and am so proud of you.