I can't believe the last time I posted was in January.
I have some updates both in terms of my treatment as well as the rest of my life. I'll start with treatment updates and those who aren't interested can skip to the other updates or visa versa.
I had a phone appointment with my ME/CFS doctor in December to go over my labs which were pretty whacky-particularly the metabolic panel. He was concerned about them and wanted to run them again to see if the results are the same.
The original plan was for me to focus on detoxing my body for about a year or so and then go back to treating infections but after seeing my labs he switched gears. One of the labs showed clear immune dysfunction which surprised even my doctor. In addition the labs showed a chronic active bacterial infection (chlamydia pneumonia or CPN). He ordered further testing for CPN after seeing that the level for IgG was the highest the lab measures. IGA can show active infection and that was also high so he wanted me to start treating it with a low dose of Minocycline as well as pulsing Zithromax 3 days per week.
But first he wanted to deal with my low Vitamin D levels. I should have posted right after I spoke with him so I could remember what he said about the way my Vitamin D levels showed up. He said something about me being one of the complicated patients. He said that for me to take Vitamin D would mean I would have an increase in symptoms so he wanted me to start really low and once I'd been on Vitamin D for awhile then add in the antibiotics so I did that.
I started with 1/3 of a pill of Minocycline on Monday. The last time I tried Minocycline was within the first year of getting sick. I had horrible anxiety as well as muscle pain etc...so my doctor wanted me to start at 1/4 of a pill and work my way up to one pill so as not to stress my system too much. Even 1/4 of a pill is causing an increase in symptoms. The load of CPN in my body is really high. But I'm glad to be starting treatment because maybe this will give me a big jump in my functioning level.
There is strong research demonstrating the link between chronic CPN, heart attacks and strokes. I'm already at risk with high blood pressure as well as high cholesterol so its worth treating. There is also research demonstrating that people who had a heart attack or stroke had a statistically significant reduced risk of having another one if CPN was treated.
My doctor also said I have active, chronic EBV. The labs indicated that it is still trying to reproduce even though I've been on antivirals for over a year. He said eventually the Valtrex will stop working and when it does he will prescribe Isentress which is an antiretroviral drug used to treat HIV/AIDS patients. He said he's almost ready to prescribe it for me now but he wants to wait a little bit.
Here is a brief article which talks about how Isentress can treat various Herpes Viruses (EBV, CMV, shingles).
He is concerned about the level of inflammation in my body particularly my colon and wants to do some testing to see what other organs are having a hard time. He also ordered more testing for my immune system as well as the CD57 panel.
He said to start taking high doses of D-Ribose, L-Carnitine (which was low), and COQ10 to give my heart a bit of a boost especially as I start treating the CPN.
I'm still doing the best I've ever done since getting sick. I have been taken down a couple notches after starting the Minocycline but its amazing to me how well I've been doing considering. It really makes me wonder how big of a factor mold exposures play in my illness but that's for another post. Because of the intense stress, grief, etc...I should be doing a lot worse (knocking on wood).
As far as surgery is concerned my GI doctor saw improvement in terms of the colon inflammation but surgery is still on the table (no pun intended). I made enough improvement that he decided to postpone a surgery recommendation but not enough warrant a "return to a medical patient status rather than a surgical patient". He prescribed more meds and wants to see me again in April. If I don't have enough improvement then I'll need surgery. He said the surgery is very painful and hopes I won't have to go through it.
I've gained about 5 pounds which is encouraging. I'm also tackling the food angle which is huge for me. I've met twice with someone getting her M.A. in Holistic Nutritional counseling (?) and we'll meet again. She's excellent. I wouldn't hesitate to recommend her to anyone I know. I'll be completely changing how I approach food. I even bought a cookbook. I've been juicing since Christmas and that helps as well.
I'm still looking for a place to live. To say that its a challenge is an understatement. I'm still incredibly sad about everything. It's not as bad as it was the first couple months but the sadness greets me every day. I still cry daily but I've learned to bow to it and lean into it rather than trying to stuff it or avoid it.
A new wrinkle emerged in my housing search a couple weeks ago. Some of you know that we had adopted a very sweet 7 year old golden retriever about 3 months before the break up. Chelsea and I have been inseparable since. I take her almost everywhere with me. It's comforting to be with her.
Starting about 6 weeks ago I noticed she'd been drinking a lot more water. I chalked it up to stress and thought it would stop. I needed to see the vet anyway to renew her heart worm medication and to talk to the vet about the increase in thirst as well as a wound that wasn't healing in spite of multiple rounds of antibiotics. The vet was concerned and said they take the increase in thirst quite seriously as it could mean a problem with her liver, kidneys, or diabetes.
I figured the labs would come back normal or that she would have diabetes. The day after seeing the vet I noticed Chelsea seemed a bit lethargic. She's addicted to food and normally when I go to the kitchen she follows me hoping I'll drop some food. She wasn't doing this on Saturday and that's when I knew something wasn't right. I decided to call the vet to see if the labs were in. When the vet returned my phone call she had that somber tone.
To back up a bit, in January of 2010 Chelsea was in liver failure and almost died as a result. At the time her liver was cirrhotic. She was surrendered to a wonderful rescue organization called Homeward Bound. When the owner of Homeward Bound went to pick her up she was almost unconscous. UC Davis said to let her go so Jody brought her to the vet at the rescue organization. The vet and Jody refused to give up on Chelsea. That she survived surprised everyone involved with her.
The vet told me that Chelsea's liver values were increased. One in particular was incredibly high. It's called a Bile Acid Test and shows how well the liver is functioning (or not). The top of the range is 6. Chelsea's results were 117. She explained that Chelsea's liver is not able to cope and recommended an ultrasound to see if that pointed to any cause or whether or not it's something treatable.
I was a bit slow on the uptake and didn't realize she wanted me to take Chelsea to an animal hospital that day. I asked about waiting until Monday and she said no. She'd already talked to vet at the hospital and had faxed her test results to them. I asked what her prognosis was and she said worst case was days to weeks. Best case would be if they could find out and treat what's causing her liver to fail again. In that case she could have a couple more years.
I took her for the ultrasound (or rather, my youngest sister and her husband took me) which showed her liver was cirrhotic with fibrous changes. The ultrasound also picked up 2 'moderately enlarged mesenteric and sublumbar lymph nodes' which made the vet wonder about lymphoma. If it does turn out that Chelsea has lymphoma, treatment is not an option because her liver wouldn't tolerate it. Lymphomas are common among goldens. It can be aggressive with a majority of dogs dying within 30-60 days of diagnosis without treatment.
There is nothing that can be done about her liver. The vet did say that we could do a biopsy but because her liver is so small they would need to do open abdominal surgery which may or may not reveal the cause.
He wanted me to take her in for a repeat ultrasound in two weeks to see what the lymph nodes are doing. I have an appointment to take her in tomorrow. I'm nervous. I don't want anything to be wrong with her. I want her around for as long as possible. It feels a bit unfair that this is happening right now.
I was able to consult with the vet that originally treated Chelsea's liver failure. She agreed that doing a biopsy at this point would be futile. She was concerned about the Bile Acid Test results. She said there is nothing more that can be done except continue to give her the supplements and hope for the best.
The vet at the hospital said Chelsea could have a few months but it would depend also on whether she has lymphoma.
All the testing including tomorrow, will cost just over $2000. She is on a liver disease diet as well as a new supplement the vet recommended which also happens to cost $100 per month. I emailed my ex to let her know what was going on because she loves her too. She helped a bit with the cost for which I'm very grateful.
I'm hanging in there. The last thing I want to do is abandon Chelsea nor am I giving up on her.
This song seems somewhat fitting: