Thursday, January 8, 2009

In Search of a Doctor

My search for a new doctor continues. I saw the HIV doctor today for the second visit. I figured I would see if I had a similar experience as the first time.

Most of my medical records had been faxed to him. He wanted to be sure he had my medical records to look over and then decide on treatment and asked me to contact my cfids doctor as well as Dr. Kliman's assistant to stress the urgency of getting the medical records to him. My cfids doctor's office had gotten my medical records to him but he didn't have a chance to look at them so he was quickly flipping through pages during my appointment.

Then he mentions that he's prepared to start Valcyte treatment with me but that he usually prefers IV Valcyte (cytovene) since that crosses the blood brain barrier better. I asked if Valcyte crossed the blood brain barrier (knowing full well that it does after doing research on it). I asked if we could go ahead with the IV (a friend of my dad's has cfids and had IV cidonavir (?) and had good results from it. The doctor ignored my question. I've learned he just ignores most questions I ask.

He decides he wants me to have a functional MRI which is a new, and stronger version of the regular MRI. You do things while in the MRI (for example move a finger) to see how the brain responds. He stressed over and over during the appointment how much he wanted me to have this as this would provide some definitive information as to what is wrong with me. I thought we already knew??? Anyway, I told him I have severe claustrophobia. He ignored me so I tried again with the same outcome.

He was asking his nurse or pa if he should just write a prescription or not for the Valcyte (I guess he was confused because I told him I was approved for patient assistance through Roche for free Valcyte). He didn't bother listening to me as I kept telling him that I already had Valcyte at home. I didn't know how much more specific I could get with him. I HAVE THE VALCYTE AT HOME. I HAVE THE PILLS IN MY CUPBOARD. I HAVE THE PINK PILLS IN MY HOME. It wasn't until his nurse or pa came into the office, heard me and said "you mean you've had EBV levels this high for over one year and you've not started taking the Valcyte you have?" Huh? Did I just walk into the wrong movie? Did you not hear me when I told you my doctor died and I was trying to find a new one? The nurse/pa went on to say "I've never seen as high EBV titers as yours. It means something else is going on. That's why we want you to get the MRI."

Sigh. My cfids doctor has largely ignored my EBV titers and been focused on HHV 6. At one point after I brought up the fact that my titers seemed high he said "oh. You're right! They are really high! How did I miss that?" At least he listened to me.

So this doctor (HIV one) is "convinced" that I have a slow virus. I'd looked that up last week and found scary stuff. This week I asked him what he meant by slow virus. He tried to ignore me but then said MS is like a slow virus. I said I looked up slow virus on the internet and it wasn't good news. They were all fatal. Silence. "Yeah. I guess I shouldn't look at the internet because it kind of scared me." More silence.

I freak out on the way home thinking "what if he is right? What if I have a fatal illness? What if I have MS?" I had to peel myself off the ceiling several times today. Finally I calmed down. I decided to call UCSF which is the only place in the bay area that has the functional MRI machines. They were very helpful. But it's the doctor who has to call their doctor and then set up the appointment. It turns out that it's a closed MRI machine and that it lasts for 90 minutes. There's no way I'll last 90 minutes in a closed MRI machine with my claustrophobia. That would be like telling me to get into an elevator that will malfunction (I've always had a horrible fear of getting stuck in an elevator).

I think I'll move on and find a new doctor. I'd like one who listens to me. Thank goodness I didn't go to this doctor when I first got sick.

This does make the fourth doctor who recommends Valcyte though.

The final straw with me though was when I asked him if there were any side effects or anything to be concerned about when taking Valcyte. He said no-it's a safe drug. Hmm. That would be the safe drug that can shut down bone marrow production? The one that you are supposed to monitor blood count weekly for the first month to make sure you don't develop a low white blood cell count? That safe drug??

I don't get it. He was rude in the way he didn't listen.

I called another doctor's office but have to wait until Monday to find out if I'm accepted or not. The woman sounded really nice and said the doctor is familiar with cfids but doesn't accept that it's a 'real' illness so he does lots of testing to find out what's really wrong.

When did the medical system switch to having to interview to get accepted by a physician's office?

All I want is an internist who is covered by my insurance-who will listen to me, believe me, and just be a good doctor. Like Dr. Kliman was.


Renee said...

I am so sorry you are a going through so much to find a doctor who will listen to you and who is qualified to treat you for CFIDS!!!!!!!!!!!!!!!!!
This doctor you have seen is a poor excuse for a doctor..sorry...but having listened to you speak about him twice now has really given me a loud red flag. You are so need to move on. You deserve a doctor who LISTENS. You deserve a doctor who knows what to do for you and is willing to look at past tests and not always have to have new many CFIDS patients end up with so many unnecessary tests. The MRI would probably show lesions from the CFS or from the Lyme, won't it? That is what I have understood. I went to so many doctors over the past 24 yrs...I quit going for my health because of their unwillingness to believe and their lack of knowledge on CFIDs....finally I did find a good CFIDS/Lyme specialist...I did not know I had lyme till I saw her...she does follow loosly Dr. Jacob Teitelbaum's protocol...he is in CA isn't he? He is well known in CFIDs world.
Enough chatter from me.
Hope you are able to find someone that you can trust and that will help you on this journey.

Kerry said...

Finding doctors CFIDS knowledgable is such a frustrating challenge, especially after losing your great doc. I had a GP who was wonderful to me. He retired early and I have yet to find a local GP who listens and cares as he did. From experience though...if we keep on keepin on,... eventually we find one of those gems of a doc.

I think its wonderful you live in an area that is doing functional MRI's--I hope someday to have one as I think they will provide a lot of information about how CFS, Lyme etc. effect the brain. But, they do not do them where I live yet.

The claustrophobia sure does make it hard though to get inside that tube. I know many doctors are aware and sensitive to patients who have claustrophobia with MRI's and are usually willing to prescribe a does of a relaxant to help. Perhaps when you find a new doc. who will be the listener and CFS/ Lyme knowledgable one, he might work with you to help you through the MRI.

I hope you find the dr. you feel comfortable with soon. I love my CFS doc. who I travel too, but finding a CFS knowledgable GP or Internist in my local area is extremely difficult. I need to start the search again soon and I'm not looking forward to it.

It does help knowing that those of us with CFS, Lyme etc...share this journey and the difficulties that accompany it.

Prof Sherlock said...

I'm sorry you're having to spend so much time finding a good doc. I went through that a few years ago and found a great rheumtologist who spends time, really listens, and knows her stuff inside and out. She was the sixth one I'd been to and all the others spent a grand total of 10 minutes, wrote me a prescription, and that was that.

Good luck. I've just recently started reading your blog and will be looking for your updates. Hope all goes well.
Prof S

Sue Jackson said...

Hi -

I've been kind of out of touch, due to not feeling well and a family funeral, so I'm just catching up on your blog.

You are absolutely right about needing to find a doctor who listens...and one who understands the dangerous side effects of Valcyte! That's just scary. I know how hard it is to find a doctor who understands. I searched for a year when I first got sick and ran into some awful ones. It's all worth it, though, when you find a good one. Hang in there and don't give up! Do you have a Fibro & Fatigue Center near you? I know a few people who've had good luck with those. Also, ask other people with CFS who they use.

I guess you're in your new apartment now and away from the mold? That's something at least.

Oh! And I took the online self-help course a few years ago. It's very good and supportive. The concept of the energy envelope, plus proactive resting (resting completely as you describe BEFORE you feel awful) was very helpful to me. I take a nap - full, eyes-closed, dark-room nap - every single afternoon, no matter how I'm feeling, and it helps a lot. On bad days, I take one in the morning, too.

I hope you get some help and support from the self-help course. Good luck finding a new doctor. There's one out there for you somewhere!


Sue Jackson said...

Hi -

I thought of something else that might help you. Do you know about the Good Doctor List? It's a list of doctors who treat CFS and FM, mostly nominated by patients who've used them. Check it out here:

Just click on your state (there are lots of options in California). Maybe you'll find someone on this list who can help you. Good luck!


Pris said...

Yes, definitely find a doctor who will listen. Jesus, Louise..this man sounds like a numbskull even though he may have 'medical knowledge'.

I hate MRI's , too. The short ones are bad enough. Last time I had one I went to a place where they were slightly larger and fans blew fresh air in so , with my eyes closed, it felt more like I was just lying in a cool breeze than stuffed into a can. Yes, I've learned NOT to use the little mirror but to close my eyes before I go inside.

Doctors throw out statements so blithely, never thinking of the fear they create.

Good luck!

cfswarrior said...


Thanks for your validation! It's good to know you see the same thing that I experienced.

I had no idea how lucky I was with Dr. Kliman. Even though he didn't do anything to treat it he was a nice balance with my cfids doctor.

I'm so glad you found a good CFIDS/Lyme specialist and that you are getting treated for your lyme.

Did you ever do antivirals?


cfswarrior said...

Hi Kerry-

Thanks for your support.

It is great they have the functional MRI here. If my claustrophobia wasn't so severe I'd have it done. I had to have two done for my back and one for my shoulder. After the first closed MRI for my back I decided I could never do it again and will now only do open MRI's.

With the functional MRI's they only allow for slight sedation (makes sense since they are testing brain function).

It really does help to know that others with this illness share this journey. It makes it a little easier to bear.



cfswarrior said...

Prof Sherlock-

Thanks for stopping by my blog! I look forward to any comments you have.

Thanks for your well wishes in finding a doctor. I'm hoping to find one soon. I will see another doctor on 2/4.

I'm glad you were able to find a good one. Listening is such an important skill for a doctor to have.


cfswarrior said...

Hi Sue-

I'm sorry to hear about your family's loss.

Yes-I'm 5 plus weeks out of the old moldy apt. Thank goodness. I'm very grateful to have that whole move behind me.

I'm looking forward to learning about the energy envelope in the course.

Thanks for the link to co-cure. I checked it out. Unfortunately, none of the doctor's on that list are near me. At this point I can't drive myself to anyplace that involves a freeway. I get a little dizzy for some reason which is bizarre since two years ago I used to commute 60 miles to my post doc.

I really appreciate the link and the help in finding a new doctor.

I hope you're feeling a little better.


cfswarrior said...

Hi Pris!

Oh my gosh, I know what you mean about opening your eyes in a closed MRI. I did that once and started having a panic attack.

I laughed at your description of this doctor. Numbskull is a good word for him.

It was quite a bizarre experience to ask questions and be completely and utterly ignored. I couldn't believe he wasn't answering me. I began to feel like an annoying gnat.

If I could have I would have run from his office! :)