Thursday, March 22, 2012

Updates 2

I think part of what was going on last Friday is due to die off from the Minocycline. I got some feedback from a cpn message board that said some people get depressed early on in treatment due to die off.

But it only accounts for part of what I'm feeling. It's been a long, hard 4 plus years of being sick. A lot has happened and I think it has all caught up with me.

I am looking into trying Cymbalta. I've had bad results after trying a very low dose of Zoloft and then with Prozac. I can't tolerate SSRI's anymore. I think Cymbalta is an SNRI so hopefully that will be better tolerated.

My level of functioning is starting to decrease. I'm hoping its from the Minocycline rather than starting a relapse. I have that gritty, burning eye thing going on. By evening my eyes feel like I have sand in them and they usually turn a bit red. Has anyone else had this? I'm also sleeping 11-12 hours and waking up with that exhausted I can sleep forever feeling. My brain has been feeling thick the past couple days.

I saw my GI doctor Monday. He said things are looking better. He wants me to start doing a taper next week to slowly go off the hydrocortisone. I had another bad bleeding episode yesterday which is curious since things are improving. The bleeding has to stop because that alone could warrant surgery. I'll do anything to avoid having this surgery.

I've been having symptoms of disc problems in my lower back at the L5-S1 level. A few days ago I stood up after sitting and could barely take one step because the back pain was so bad. I had to wait until the pain subsided before I could walk. Last night after doing my back stretches I tried to get up from the floor when the back of my thigh and calf went into a muscle spasm. I could not walk and could barely straighten my leg out to stand. I'm also having an increase in sciatica symptoms.

I saw a doctor today about my back. I'll have another epidural injection this coming Weds. Hopefully that will work but its only a temporary fix. He said my symptoms are due to the disc being bad.

I'm still taking things one day at a time. It's difficult not being able to find a place to live. The supplements for Chelsea's liver cost $80 per month and she's on a special diet for her liver which is also expensive so I have added expenses to consider. I can't afford it but I can't bear to give Chelsea up especially since its unclear how quickly or slowly things will progress. I have an appointment on the 30th to redo her labs to monitor her liver.

I would like for a few good things to happen soon. I sorta need it.

Updates

I want to write about updates but I'm also feeling pulled to honor Emily Collingridge who died last Sunday at age 30 after suffering with ME for the past 23 years. She wrote a book for people who have severe ME. I have been part of the Facebook group for those with severe ME that Emily started. Even as sick as she was she was able to write a book. Here is a good blog to read more about her story.

And an appeal from Emily in her own words here.

I don't know how many people have to die before the medical community recognizes how serious this disease is.


Friday, March 16, 2012

Going Softly into the Good Night...

I'm not sure what is happening that things continue to be difficult healthwise but today has left my weary body, mind, and soul overwhelmed and wanting to give up.

I've been trying to find meaning in all of this-the breakup, all the losses, health issues having nothing to do with ME, unable to find housing, difficult financial situation, a dog in end stage liver disease (though she's a fighter and doing pretty well right now), etc...

I can't. I can't find meaning in any of it anymore. It's just a bunch of random events that won't let up. I'm  not trying to focus on the negative or create drama. I'm simply dealing with a bunch of life events that suck and are overwhelming.

I have lost all faith in God. I no longer believe there is one. I've lost faith in myself. I have nothing to offer anyone and in fact, feel like mostly what I am is a burden on society. I am considering doing minimal volunteer work so I at least feel like I'm contributing somewhere.

I don't have hope for anything good to occur in my life anymore. After being knocked down again and again its easy to see why I've given up. I no longer have faith in the future.

I'm aware that reading a blog that talks about the dark stuff or isn't all positive can be a drag but try living it-that's even more of a drag. I actually try to not talk about this stuff in my daily life.

My back pain has revved up again. Today I got up from sitting at the kitchen table and had such pain in my back that I could barely lift my left leg. I tried taking 2 steps and had to stop. After a minute I was able to walk with minimal pain. At times both my legs feel weak. The surgeon thought the weakness was neurological but it isn't because I don't have the leg weakness when I'm not having back pain. The spine surgeon has been recommending a spinal fusion since I started seeing him last year. I've been trying to avoid that.

A little while later I had a bad bleeding episode. They are always unnerving because I'm not sure its going to stop. I have an appointment on Monday with my GI doctor. It looks like I'm not able to maintain on a lowered dose of hydrocortisone which means surgery.

A lumbar fusion is an extremely painful surgery. The colon surgery even worse. One person on one forum said its worse than giving birth, or, its the worst pain they've ever experienced. It would be nice if I could have both surgeries at once and then be put in a coma for 3 weeks.

There are times I'm in utter disbelief at what my life has become. Others I'm overwhelmed with grief and sorrow. I keep fighting on but I have to ask myself why fight anymore? What am I even fighting for? A future that holds a life of living in poverty with lousy medical insurance while living in isolation?

Just as I'm having improvements in ME symptoms, other parts of my body are struggling. I've been worried about having any sort of surgery because I don't want to end up bedbound again. I can't do it. I won't do it.

I wish I were stronger but I'm not. I used to consider myself a strong person. I can't turn all of this into a positive.

I've found myself asking the question 'If I could have 2-5 good years and then die would I trade that for another 20 years of suffering with this disease?' I would take the 2-5 good years hands down.

I've downloaded and am filling out my Advanced Healthcare Directive (everyone should have one on file with their MDs'). I used to have one when I was with a large HMO but I need to do another one. I do not want my life to be prolonged in certain instances. I'm also stating that I am a DNR (do not resuscitate) if my heart stops beating or if I'm unable to breath (that also needs an MD's signature).

The only thing left to do is surrender and not fight. I'll see if that shifts anything.

Wednesday, March 14, 2012

C. Pneumonia Treatment Update

I think I mentioned in my last post that I started antibiotics (Minocycline) a week ago Monday. Per my MD's instructions I started at 1/4 of a pill since the bacterial load in my body is so high right now.

Even 1/4 of a pill caused an intensification of symptoms. I increased it on Saturday. By Sunday I found myself in group therapy with Eeyore, Debbie Downer, and Emo. You can imagine what went on in that group. I was experiencing all this negative self talk. My mood was the darkest its been in a long time. I believed that day that there was nothing to look forward to in life anymore-that all there is, is more pending losses and what's the point of it all anyway. I could have cared less if I had a fatal heart attack.

Monday was a weepy day. I turned on the tv and saw Hillary Clinton was speaking. Upon realizing she would not be President I burst into tears. I cried at most commercials especially those involving dogs, and I sobbed at the Bachelor finale (yes-I did watch the Bachelor). I thought I would never be in a relationship again and what a failure I am, etc....

I was concerned at how bad I was feeling so I did some research and discovered that its all herx related. My lymph nodes have been sore and I've been having lots of heart palpitations, some shortness of breath etc.-all consistant with a C. Pneumonia herx. So I was encouraged by that.

I'm tolerating the Minocycline surprisingly well. The dark mood seems to have left thank goodness. I know it will likely return next time I increase the Minocycline.

I'm hopeful about this treatment. I firmly believe that cpn is my primary infection. I also started taking phosphatidylcholine by BodyBio. It helps clear toxins and also slows down the progression of neurodegenerative diseases. It is helping. I feel like I'm on the right track in terms of treating this illness. I just have to figure out how I can make it to my MD's office 2 hours north of where I'm staying.

Chelsea's ultrasound went well. The lymph nodes have decreased in size rather than increased as would occur in lymphoma. She is getting more lethargic (from the cirrhosis) which is heartbreaking. I'm hoping the new diet and liver supplement will give her more time. We'll repeat her labs at the end of the month.

It has been an expensive few months. My savings account has been drained from everything. I've had many unexpected expenses ($2000 for Chelsea testing, food, and supplements; $900 for a new crown, $500 plus for 4 new tires; and so on). In addition I'm paying for Cobra at almost $900 per month. I need the extra coverage right now in case I need surgery. It looks like I'm also going to need another epidural for my back.

I'm trying to stay present in today. The future is overwhelming. I have no idea where I'll be living, how to make friends while battling ME, how to deal with the isolation and stigma this disease brings. I get frightened at what lies ahead so I'm taking things one day at a time.

Thursday, March 8, 2012

Updates

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.

Personal Updates:

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: