Tuesday, August 25, 2009

In Search of Answers

I have a hard time trusting doctors. I didn't have issues with trusting them until my mom got sick and died 44 days after being diagnosed with cancer. The first sign that something was wrong was elevated liver enzymes. I know because I would sit late into the night with all her test results laid out over the table studying them trying to figure out what the hell happened. It was my way of trying to exert some control over a tragic situation. She died August 14-years ago. The first sign that something was wrong was the prior November when she had elevated liver enzymes. I always wonder what would have happened had her doctor run more tests to find out what was wrong. I've learned to stay out away from those thoughts because when I start thinking about it I still get angry. My mom died because she had an inompentant doctor who was more interested in making money by following managed care guidelines then he was in providing proper patient care. They don't know where the primary site of her cancer was but it metastisized to her liver.

Then last year my dad's reoccurence of prostate cancer was misdiagnosed. It spread to his bladder causing his bladder to throw blood clots. He ended up in ER 5 times and was misdiagnosed each time. Luckily for him he switched doctors(and states for that matter) and is responding to treatment.

So I have good reason for not trusting doctors. I must confess this clouds my judgment at times.

This morning I spoke with my local doctor's nurse who told me my liver enzymes were normal. Unbelievable. He even said they could be caused by drinking. I told him I haven't had a drink for 18 years. I said that I've seen the results and they don't seem normal to me. He said he would bring it up with the doctor. Did he ask if my liver hurt or that I've had weight loss? Nope. It also turns out they never sent over the request for the Brain Spect Scan nor had they contacted my insurance company to get prior authorization (thank goodness for the technician I spoke to at the Spect Scan Dept). This doctor is so sure I have a fatal neurodegenerative disease one would think they would have made sure they followed through. I realize doctor's offices are busy and frankly the test is unnecessary because I have ME not ALS or the other things they mentioned. I want to see what's going on in my brain and, these other things have never been ruled out so I think its important to get the test done. I understand why the ALS concern though because they are seeing some of the symptoms (slurred speech, muscle weakness).

In the meantime I received an email from my ME doctor's office saying they wanted to speak to me asap. They called me shortly after I spoke to the nurse at my local doctor's office. My ME doctor said that in their experience with Valcyte they have not had people's liver enzymes go up after 7 monthsh on Valcyte. He wonders if something else is going on with my liver or maybe it was a randome spike (just like my mom). He advised me to restart Valcyte and retest my liver function in one week. If it has gone up then stop Valcyte. Or, if I start feeling nauseaus or have pain in my liver. I interrupted him to say I'm having pain in my liver. Last night it felt like it was throbbing. It was a really weird pain. I'll restart Valcyte and retest in a week. I actually start feeling worse when I'm off Valcyte so I'm fine with going back on.

Even though I'm determined and a fighter there's a part of me that almost doesn't care anymore. So I get cancer and die or I have a heart attack and die. At least I won't have to fight all the time for everything. Or feel the loss of my past and my future. Or feel the friggin exhaustion, the cognitive impairments, the silence of family and friends, the marginalization this illness creates. I won't have to experience the pain I feel when trying to reconnect with people and then tell them about this illness only to never hear from them again. Unfortunately this has been my experience of late with three people, maybe four (I'm hoping the fourth person is just busy). So while I'm fighting hard, at a deeper level I'm getting kind of tired of fighting on my own all the time. I'm actually no longer afraid of death. Sometimes, as I'm laying awake at night unable to sleep I think of what it would be like to be free of this body that no longer works. Sometimes that's what calms my mind down-the thought that I don't have to live this way forever. Really though I don't want to die. But I can't help but thinking about it. After all, my dissertation was about the death experience (both literal and psychological) and its relation to transformation. I went through all of Jung and Freud's writings, took notes on everything they said about death, and analyzed it.

But I digress. I got more test results in the mail. This time it was my C4a and VIP (vasoactive intestinal polypeptide). My C4a was 8232. The high end of the range is 2830. Last year it was in the normal range. My VIP levels were so low they were undetectable (reference range is 23-63). I asked my ME doctor about them and he didn't have much to say. C4a has been used by some ME and LLMD's as a diagnostic indicator for mold or lyme. I would have liked it if my ME doctor would have said "aha, this is what this means" but instead he said "we really don't know what it means but I fully expected this to happen." Well, I didn't! Something is needing to be treated. If lyme is running rampant I'd like to treat that. If it's mold then I need to do something. If its something else...I'd like to figure it out. This is what Dr. Shoemake has to say about it:

Patients with certain HLA genotypes (immunity related genes) may develop inappropriate immune responses which may include antibodies to: myelin basic protein (often from fungal infections), gliadin (wheat-like allergy), and cardiolipins (affects blood clotting). Most devestatingly of all, the complement immune system becomes chronically activated resulting in high levels of C4a.

My level of functioning is getting better in some ways but my neurological functioning is getting worse. My anxiety is skyrocketing again as is sound sensitivity, smell, and my insomnia is really, really bad. I wake up everymorning around 5am with anxiety pounding away (that is if I'm lucky enough to be able to sleep until 5 am.)

So I'm trying to figure it all out. Every ME patient is really on their own to figure this stuff out. Thank God we have each other to talk to, bounce things off of each other, and learn from each other.

More and more I'm coming to the conclusion that ME is primarily a neurological disease that affects the hypothalamus, pituitary gland, frontal lobe, brain stem, and other structures in the brain. Because the brain isn't working right it leads to other problems like low cortisol, low hormones in general, immune system problems which cause infections to reactivate, inflammation to develop, the dysuatonomias, etc...It's just an uneducated guess. But then how does the methylation cyle fit in? I've been doing the simplified protocol for over a year now....with little to show for it. Does the methylation protocol really help anyone? I've heard it does but I'm not seeing it nor are my friends.

In previous entries in my blog I'd write about ME using either ME/CFS or when I'm particularly struggling just simple CFS. From now on I'll be using ME for Myalgic Encephalomyelitis. Because this is what I have. I don't have CFS I have ME.

In the meantime I'm waiting for a packet from Dr. Peterson's office and I'm trying to find contact information for Dr. Kogelnik who was the post doc fellow working with Dr. Montoya. Apparently he has opened his own practice and has started a database to input info from ME patients.

In peace and Wellness,


At Home on the Rock... said...

Terri, I hear and understand your frustration with Drs. I have had similar experiences (with my mom and her care while she was living) as well as my own experiences.

It is too bad we have to fight for anything and everything. Being sick already, we really don't have the extra energy to put into fighting for things. It's too bad we can't use that energy toward helping ourselves get better.

I hope you get answers soon. Thinking of you today. (((hugs)))

Jo said...

It's almost as if your body has become a battleground as well as a test bed. I'm not medically qualified but when I looked up Valcyte before it did mention liver damage as a possible side effect. Not to mention the depression and all the rest. Interestingly, as I write this, my liver is starting to hurt.

Could it be your liver is overwhelmed by both the Valcyte and the immune dysfunction? Also you are dealing with so much grief. It's got to have an effect on your body.

It's a horrible place to be and the whole doctor situation sounds like a nightmare.

Keep writing it out. We'll be here for you.

Joanne said...

Hi I just came across your blog through my Google alerts.

glad to see you have considered Lyme as a possible cause or co contributer. Have you seen a LLMD then and did you try long term antibiotics.
A lot has been happening with recent IDSA review details on my side bar on my blog. My own battle with illness diagnosed as mE/CFS turned out to be lyme and now on long term antibiotics I have my health and life back.
Good luck to you in finding what works for you.

Cusp said...

Really feel for you. I don't trust doctrs either and for very similar reasons coincidnetally. I so agree with Jo that you seem to be in a place now where so much is gong on and you have so many doctors' input and drugs and then there are all the issues of grief you are dealing with just now. You're bound to be anxious and confused --- don't know how you seem to be holding together as well as you are.

Hope you can find a really good doctor soon and find some peace.

Take care

Renee said...

I second what everyone here is saying. You are dealing with so much Terri. Grief, illnesses, side effects of powerful drugs, possible Lyme activity, etc. It takes great courage to keep going and keep advocating for yourself. I also want to say, that writing it out is very helpful for me and often releases the build up of "pressure", of emotions, etc. and that helps me see things more clearly. We are willing to listen, to be a part of your journey. We understand and know how hard you are working to get well.
Gentle hugs and many prayers....

Treya said...

Hey Terri. I can really associate with what you are going true right now. I to am going through that "don't care any more" frame of mind. I'm just so drained from it all... It is sooo tiring trying to do all the fighting alone. I am also with you on the whole friend, family, relationship issue... It's enough to make anyone go mad!!

Hang in there girl. You're not alone. xx

Alex said...

I've been reading your blog for several months and just wanted to say I know exactly how you feel. I've had ME for a long time but the last few years it's gotten much worse. I've been trying desperately to determine what could be causing the down turn and I often feel like my whole life is devoted to research and experimentation with the Drs. contributing not much at all. Three years ago my blood pressure started to rise even though it's been very low all my life. It took my Dr. 3 years and much suffering on my part to determine it was a tumor on my adrenal gland. I had all the classic symptoms but still had to demand a CT scan and then they found it. I'm still feeling bad so I continue to search for answers. Just wanted to let you know how much I empathize with your situation and how deeply I hope for relief for all of us one day

cfswarrior said...

Hi Linda-

It is too bad that we have to fight for everything related to medical care, ssdi, etc. It' so true what you said. I don't like using up my energy on things like this. I'd rather use it for other things.

Thanks for the hugs and your support. I'm glad you made it through the hurricane...

cfswarrior said...

Hi Jo-

You raise a good point about my body being a battleground. It's feeling that way. I had forgotten liver damage was a possible side effect. I'm going to have to do some serious rethinking of this.

The grief-I guess trying to stuff it isn't working very well.

The doctor situation has been quite stressful.

I'm so glad you guys are here. I'm glad we're all here for each other.

Thank you-

cfswarrior said...

Hi Joanne-

I treated lyme and then babesia last year. I was on antibiotics for many months with little improvement.

Right now we're treating the viral infections and then will return to treating lyme.

I'm glad to hear you were able to successfully treat your lyme-that's wonderful.

cfswarrior said...


Thanks for your empathy and compassion. It sounds like you know what this place is like.

Reading everyone's comments has been good food for thought. I am going to slow some things down and just let myself rest.

I had acupuncture today and the acupuncurist said "your body is confused-fighting infections, lots of medications, and the emotional stuff"

You are right on target with your comments.

Thank you-

cfswarrior said...


Thank you for the prayers. I could use them. Your comment is quite helpful and right on the mark.

I think the lyme is back unfortunately. I'm now having joint pain in my wrist. Last year I would have rotating joint pain.

I'm going to do more writing. It does help and I do feel better after writing.

I'm deeply grateful that you guys are part of my journey and that I'm part of your journeys. This sense of community is more helpful than I can say.

Thank you-

cfswarrior said...

Hi Treya-

I'm sorry you're feeling this way too! It kind of sucks doesn't it?

Sometimes I'm okay with the whole friend etc...stuff but then other times it just feels lousy and unfair to watch people back away once they discover that I'm disable by this.

Thank you for your words and support...

cfswarrior said...

Hi Alex-

Thanks for posting a comment. That is awful that it took them 3 years to find the tumor on your adrenal gland. Did you get it removed?

Feel free to email me at cfswarrior@gmail.com if you want some help figuring out what might be going on. I've been through mold, lyme, viral infections although you probably have more knowledge being sick for a long time. It must be frightening and discouraging to get worse.

I too hope and pray they find some answers for all of us soon.

Glad to have you aboard...