Friday, January 29, 2010

Back to Basics

I'm trying something new with adjusting the settings of my blog to private just to see how it feels.

I'm a bit discouraged because it seems I've been in a decline since October. I keep waiting for a return to my previous baseline functioning but so far it remains as elusive as a butterfly. I haven't been pushing myself because I've spent the past 2 plus months in bed for 20 hours per day. It must be the fact that I've had to severely restrict my diet to avoid the upper right side quadrant pain. In spite of eating about 1000 calories per day (I'm completely sedentary) I'd say I've lost a good 30 plus pounds at this point and still losing. I've added Ensure just to get more calories. It tastes great but doesn't make me feel all that great because it has a lot of sugar in it but also 230 calories and nutrients both of which I need.

My endoscopy is Tuesday at 8:00 a.m. I'm nervous about it and have been going in and out of fear at what might be going on. I haven't a clue. I keep thinking of what Toni said in her comments and it helps.

I'm working on dealing with my ever growing anxiety so I'm back to listening to relaxation exercises, get my body to calm down.

I've stopped all treatments except for Famvir, hydrocortisone, thryroid med, sleep meds, and calcium/magnesium supplements until I find out what's going on.

I'm trying to do some work on my attitude. I feel zero sense of spirituality and it what I most want and need right now. So I downloaded a bunch of guided imagery from itunes in the hopes that it will reawaken a spiritual sense as well as a sense of meaning.

I don't know that I'll post again prior to the endoscopy but I'll keep you all posted on the results if I get them that day....

Peace and Health to All...

Thursday, January 14, 2010


This abdominal stuff has been stressing me out. It's quite strange because when the pain occurs I feel a surge of anxiety along with this feeling that something is really wrong. It doesn't help that my anxiety has been on the increase these past couple weeks.

I refuse to go back and see Dr. Muscle Strain so I contacted my insurance company to see if I needed to have a referral to see a GI doctor. Contrary to what I'd been told over the phone by various doctor's office I was told that I do not need a referral. Thank goodness. So I contacted a very local (exactly 1.7 miles from my house) GI doctor on Tuesday. The RN who answered the phone upon hearing my symptoms told me they wanted to see me sooner than later and made an appointment with a doctor the following day.

I went to the appointment expecting to be brushed off but I was hoping for a referral for a HIDA Scan to see if my gallbladder is working correctly. The doctor I saw was very nice and I really liked him. He was good friends with my doctor who died in October. He asked a bunch of questions then took me to an exam room. I was expecting him to palpate my entire abdomen but he didn't even though he began the exam stating "I'm going to press down in a bunch of places". He started with a spot near the right side of my stomach. He pressed and asked if that hurt. I said "a little not that much.....OH MY GOD THAT HURTS"  as he continued to press harder. He stopped the exam at that point and we went back to his office. He didn't palpate any other part of my abdomen, didn't feel the gallbladder or anything.

He said that he's going to order an endoscopy (although he called it something else). He said he wanted to see what was happening in my upper GI tract. I was surprised and thrown off a bit. He also gave me some medication to take to reduce the stomach acid? It's called Zegerid and is a combination of prilosec and sodium bicarbonate. As he gave me the samples to take he said "I want to get that stomach acid down before your endoscopy." I was totally confused by that point and failed to follow up on why he thought I even had stomach acid because I didn't think I was describing symptoms of a stomach ulcer.

So I sat there for a minute and finally asked him "do you think I have cancer?" and proceeded to tell him about my mom and dad. I've never asked a doctor this question. He said "that's why I'm ordering the endoscopy." Huh. I was hoping for a different answer.

I asked for a HIDA scan although I felt kind of dumb for continuing to pursue the gallbladder issue when he is clearly thinking something else. I didn't even have the presence of mind to ask him what he thought was going on. He said "I'm going to order one test at a time. If the endoscopy comes back normal then I'll order the HIDA scan." I was glad to hear that.

So I left his office feeling good about him because he seemed to be thorough (he ordered liver functioning tests along with amylase and a hepatitis panel) and he seemed to be ruling things out as we were talking. He does not think this is a muscle strain. But I also felt surprised and confused.

I'm wondering if that place where he pressed is responsible for the pain I've been having. It's right near the sternum on the right hand side. I also get pain radiating around the liver area to the back almost like the pain is tracing an outline of my liver.

I stopped the Zywobin Forte because it was causing pain. I'm disappointed because I felt like the enzymes were helping. I also stopped the cholestryamine because that was also causing pain. The fact that both of them caused pain was surprising because neither contains any fat but then the pain has gotten to the point where its not predictable or connected to any particular food. It's not severe pain but enough to be distracting. Sometimes its more of a dull ache.

I put on a pair of jeans to go to the doctor's appointment. I was concerned to see that I was swimming in them so I'm continuing to lose weight. I don't think it shows that much in my face but when I put on clothes its very clear and concerning. These jeans were tight awhile ago.

I am still taking Famvir at the full dose. It's only been 12 days so too early to notice a difference.

Sunday, January 3, 2010

Happy Belated New Year...

I can't believe my last post was on December 19. Time flies....  

I don't think there is much more in the way of affordable treatments left although if I could I would try stem cells.

Low Dose Naltrexone didn't work for me. I may try it again in a couple months. Not sleeping along with the dizziness and increased vertigo-like feeling was a bit too much. It could be that it was just too much of a stressful time. My doctor thinks I had a bad reaction to the LDN which happens but I'm disappointed. I had some hope for this.

Yesterday I started Famvir at half the dose my doctor prescribed. The headache is to die for. I was up in the middle of the night last night trying to find the ketamine and licocaine spray that my doctor had prescribed while I was on Valcyte. I was pleased when I found them and disappointed when I saw they were expired. It can't be die off I'm experiencing since its only been two days so the muscle aches, headache, malaise, fevered feeling/chills all must be from another virus along with side effects.

Out of all the treatments I've tried (and I think I might have tried most things by now) the ones that have been most effective have been the methylation protocol, Vitamin C, antivirals, hydrocortisone, and pacing.

Still no news regarding XMRV. I've been reading patient reports on a message board and it sounds like VIP dx got overwhelmed and things are a bit chaotic there right now.

More later on this week....