Thursday, January 12, 2012

Update/Antidepressant rant

It's been three months since my last post.

Since then I went off the sublingual GcMAF and started MAF 314, which is the GcMAF yogurt.

I took my first dose on Halloween, I don't think I've missed a day. Since then I've felt better, I've felt worse, I've felt better, I've felt worse.

I thought for awhile my skin looked better but now I'm not so sure. I think my tongue looks healthier.

I think my digestion is better. Lately I've even tried eating chicken and fish again. I stopped eating meat regularly then totally a couple years ago because I didn't have enough energy to digest it. Every time I ate meat I'd end up feeling woozy, then quickly falling into a thick, dreamy sleep with my stomach churning, and I'd wake up suddenly two hours later.

I'm hoping if I can eat meat more often I might have a little more energy. I've been eating eggs for protein but I think this will be better.

*

While I was in Ohio for Christmas, I got called for jury duty in California. This happend a few years ago. I went to my old internist, Dr. M, who's office is just a 5 minute drive. He was happy to write my medical excuse even though I hadn't been to his office in a few years. Unfortunately when I asked him this time he said he didn't feel comfortable writing it since he hasn't seen me since. Which is understandable. But also so backward. I haven't been in to see him because it's not worth the effort. There hasn't been a cure for CFS in the last two years. He can't think I'm all better now?

So I called my "new internist", Dr. G. I switched to her because I felt Dr. M didn't really get CFS. On my first visit Dr. G made me feel like she really got it and I remember thinking she didn't say any of the typical wrong things. But on subsequent visits she did. And now going to her is worse than going to Dr. M, just a slightly longer drive.

Dr. M couldn't see me until next month, but Dr. G's office said it was a $25 charge for jury duty forms and I could come in anytime the next day. I considered driving myself but decided pretty quickly I shouldn't try. I thought about asking someone but before I could think too much Jim offered to drive me during his lunch break.

Jim never made it back to work. It took a long time to see the doctor.

She comes in with my chart. "So how are you doing? Are you back at USC?"

"No, I haven't been for years"

"So what are you doing are you working?"

"No"

"So...what are you doing?"

"Nothing"

It's not an easy thing to say, that you are doing nothing, but it's the truth. And I am angry, because even though I haven't seen her in a year, she has my chart, she recognized me in the waiting room, she knows I have CFS, but she still doesn't get how bad it is.

It reminds me of a scene Dorothy Wall wrote about. She went to see her doctor for something, a doctor she'd been to before. She was very sick with CFS. It was a huge effort for her to get to the appointment, to make it through the appointment. She tells the doctor about her symptoms and it seems like she is listening. And then when the appointment is over the doctor recommends some play she saw. "You should see it." And she says "Doctor, I have chronic fatigue syndrome, I don't go to plays."

I loved that line when I first read it. You tell her Dorothy! I like to imagine it made this big impact on the doctor. But I think if it had been me to say it the doctor would just roll her eyes behind my back and think "what a dramatic bitch."

Dr. G says "...and you were seeing some 'famous specialist?'"

I almost didn't know what she meant. But I told her yes, I was still seing Dr. Cheney and that lately I had tried GcMAF, and now was trying GcMAF in yogurt form. She didn't ask what GcMAF was, which was a relief.

She asked if I was on any antidepressants and I said no. I remembered she asked this last time. I told her I didn't have any interest in going on antidepressants.

"But you are so young, it's such a shame you...you should be out doing things..."

This is true, I think. It is a shame. It is a major shame. But please, please don't say it like that. It sounds like you are saying it is my fault. Like this is my choice. And I have tried so much. I've tried almost everything. I hate that she says this.

A neurologist specializing in sleep disorders said something similar to me once. First, she said she couldn't do a test on me because I was sleeping too much during the day and not enough at night and they didn't run the sleep clinic during the day. Then she said "Chronic fatigue is a syndrome, it's not a disease." She said something about how it can be corrected by things like changing your sleeping pattern and when she saw I was geting upset she said "You are a young girl. Pretty girl! Smart! Good Height. There is no need for this." Then I cried some more because I came all this way, she had been recommended so highly, and how could she help me if she thought that this fatigue was just some behavior pattern I'd adopted because I had low self esteem? Also I cried because I was sleep deprived and for me it was like the middle of the night.

Today I tried to sum up again for Dr. G how I have already tried six or seven antidepressants over five years and all that time I just got worse. Some of them made me sleep more. Some of them didn't make me sleep more. Some of them made me a little happier when I was awake. But none of them helped with my real problems, that I was tired all the time and needed to sleep 12-17 hours a day. And that I couldn't concentrate anymore. That I couldn't do math or write papers anymore. No antidepressant ever helped with that.

But she still said I should try the new SNRI's like Cymbalta. I said I just didn't see the point of going through that again. I'd never heard anything about Cymbalta helping with post-exertional malaise or anything.

Oddly enough, I looked up Cymbalta in Wikipedia tonight just before I wrote this and it said

"As of January 11, 2007, Eli Lilly is currently enrolling patients for double blind Phase II and Phase III trials of Cymbalta for the use of chronic fatigue syndrome (CFS) in conjunction with the University of Cincinnati.[28] "

Funny coincidence. Maybe if I were living in Ohio I could be a part of that trial. Make myself useful. But then I'd probably have to go off the MAF 314 or something.

I also found out that Effexor, which I started my first year of college, is an SNRI. It got me through my first semester but one week into the second semester and I couldn't get out of bed. Definitely post-exertional malaise, in hindsight. That's when they took me off Effexor and put me on Adderall. "Just to keep me awake"

But my doctors kept telling me I should keep trying antidepressants until I found the right one. So I did. Before I started my first semester at USC I started Lexapro. (I think it was Lexapro) On Lexapro I was sleeping 17 hours a day. I was missing so much school it looked like I was going to have to drop out (and I did) but I was determined to listen to my doctor and stay on this medicine. My best friend, who was also my roommate then, was mad at me. When I told her I was on Lexapro she said she'd been on it too, it did the same thing to her, and I shouldn't waste time on it, I should just get off it. I should have listened to her, but then what would I tell my doctor? He was telling me to stay on it. He said sometimes it has side effects like this at first but they go away.

I think I stayed on it two or three months before I gave up. As soon as I got off it my sleeping went back to normal. (12 hours a day) But it was too late.

I took a few months off and then I went back on Prozac. I'd taken it for for six months when I was eighteen and I thought it was the one that had worked best. In retrospect, the fact that I felt better at this time probably had nothing to do with which drug I was on. I was already out of school and I stopped taking it before I started working. So I had a lot less stress and I could sleep as long as I needed, and I did. Also, I was younger and healthier and hadn't been sick as long.

When I tried Prozac again four years later it didn't do anything. Same when I combined it with Wellbutrin and Adderall and whatever they threw at me.

I haven't tried anymore since then. And I just don't have any interest.

Other things Dr. G said that annoyed me.

"When you go to the specialist, do you see that all the patients are women?"

"Well he only sees one patient a day so I've never seen..."

"Because most of the people with Chronic Fatigue Syndrome are young women your age."

I wish I had said "Why are you telling me this?" But instead I just said that a lot of the patients I see on the message board were men. I wish I hadn't said "message board" because as soon as I said that she cut me off. I didn't even mean message board like, normal internet message boards, I was actually referring to the Yahoo Group just for Cheney patients but I didn't make that clear.

So I never found out where she was going with that.

When trying to talk me into SNRI's she said "You have to run and jump and dance and..." and I cut her off and said "No, actually, exercise makes me worse" and Jim, who was setting next to me all this time, chimed in to agree.

"Well I just said jump and dance to mean you have to try everything."

I wanted to say "But I have tried everything"

Poor doctors, up late at night, pacing around their offices, thinking "What can you prescribe to the patient who's tried everything?"

And for the record I did try jumping, and dancing. They didn't help and probably made me worse.

In the end though she signed the form and I am excused from jury duty for one year. I asked if she could make it longer since there was no reason to expect I'd be better in a year. But she said that was as long as she could make it for unless the patient is over 80.

I wondered if I could find another local doctor before the next year so I wouldn't have to come back. One who understands and won't put me through this. But I think the chances are really, really small.






14 comments:

  1. So sorry for your experience. Sounds like you need a new doctor ASAP. This one is beyond clueless. I'm so frustrated for you.

    By the way, when people tell me CFS is just a syndrome, I now say "AIDS is a syndrome too. And your point is?" :)

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  2. Thanks for the sympathetic frustration. I really would like a new doctor, but I've been to so many and unless they are a CFS specialist they are all exactly like this. I want to find a new one who is actually knowledgable about CFS but it's like finding a needle in a haystack.

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  3. Am so sorry you are dealing with this nonsense! What does it take for doctors to get that this illness does not just clear up by magic with time?!

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  4. I am fully agree with nmj and Anonymous, you really need a good doctor who have knowledge of the disease.

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  5. Again, Nasim and Fatigue care, thank you for sharing my frustration!

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  6. Ugh. I can totally relate to doctor visits like you described. They haven't a clue and its so frustrating because it takes up energy to go see them. I had one doctor tell me I was so calm I should volunteer to read books to kids. She had no idea the reason I was "so calm" was that I was trying not to pass out.

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  7. I was just thinking today about this therapist I saw when I was really sick and living with my parents. We were talking about music and I said I'd been listening to a lot of Philip Glass lately. And he said "You must have a lot patience!" and I was like...it's more that I just have a lot of time. He was a good one though.

    I actually sometimes get envious when I read your blog and you talk about your doctors because they seem to be knowledgable about CFS. I know you've had some trouble with doctors too though.

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  8. Ugh, Alison, what an awful experience. I differ with some of your answers, most namely what you're doing. You're not doing nothing at all! Your time is taken up with dealing with a very disabling illness. Everything you do or don't do has to be calculated with that in mind. It's not that you're doing nothing, it's that you *can't do anything*!

    Anyway, I'm not scolding you at all, and I know exactly how flustering it can be to get into that little room with the doctor and have them cutting you off and brushing off your answers. I know it makes me confused, because I'm trying to think through what I was going to say at the same time I'm trying to thing of what I'm going to say next. And shame on her for not listening to you.

    Have you tried any of the people on Co-Cures Good Doctor List? Maybe you'd have better luck with a doctor who's already broken in.

    -Jocelyn

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  9. Hi Jocelyn,

    I'm not reading really this week, I need to give my eyes a rest, but I skimmed through your blog and I'm really looking forward to reading it when I'm feeling better. It seems like we have a lot in common.

    Thank you for reminding me I am not "doing nothing" You are so right. I just wish the doctor had seen it that way.

    I've looked over the good doctor list every now and again, but I never called one, I think because I am scared off by the lack of information. Maybe I will call one soon though.

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  10. Hi Alison! I've now read a few of your posts and barely know where to begin! (BTW: I found you through Treya's blog.) I barely know where to begin because each and every paragraph you've written which I've read I want to write a solid page on - I tend to get a bit long-winded!?!?

    I suppose I'm most concerned/upset by the fact that you've had such cruddy local docs. Funny - not ha! Ha! Ha! - but the CFIDS specialists I've seen have been the worst experiences I've had (disclaimer: I've NOT seen Cheney, but...). My GP has been a god-send. He has managed me well (we're a team) whereas the biggies have almost killed me, literally.

    Btw: I've had this for 37 years and am almost completely bedridden. My iPad is what's helping me reestablish my life back with people, hopefully friends, as I come back to a world that understands. 7 weeks ago I had just finally had it and started a blog.
    There I hope to add a chuckle to someone's day, to add a bit of happiness, but also hope I can help others too. Another BTW: I wrote one post where the description of my last CFIDS specialist is described at the following post,which is at http://laughingfrommysickbed.blogspot.com/2012/04/you-never-have-second-chance-to-make.html
    You might "enjoy" that one!!!

    Enough about myself. I really hope you can find a local doctor who can help. One problem I see is that an awful lot of doctors are not accepting patients with pain problems - because they are being "terrorized" by certain agencies, Ohio being one example, incidentally. I happen to have Fibromyalgia, and a bucketload of other "problems" because of my core illness, including severe (unheard of!!!) insomnia, migraines, Human Growth Hormone deficiency,...the list goes on and on. I live in fear that something awful will happen to my GP and THEN what will I do?

    I so wish I could give you advice on how to go about finding a good local doctor who is knowledgeable, or if not knowledgeable, willing to learn. You may want to find one on the younger side and not one about to retire, though an older doctor could recommend a younger one once you've "gotten on." But please know that they are out there. It's awful how many things we need to take into consideration. But if you find one who is willing to learn and work with you, giving you no "attitude," you might find someone who's a real gem.

    Now if I could just find someone who could clean my house - sorry, it's hard at times, to be completely serious! On the other hand, THAT has become a huge concern...it's a "quality of life" issue.

    Best of luck. I hope to read more of your posts. I hope you read the post I mentioned... Hang in there and I hope that through some minor miracle, you're having a terrific day.
    Irene

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  11. Please be very very careful with Cymbalta, that drug nearly killed me and the Drs did nothing. I kept teling them I felt I was being poisoned and all my systems were failing (worse than normal if that could seem possible). I somehow garnered enough strength to request lowering dosage, once I did symps started to abate. After getting off entirely it took a yr to get back to 70%. Be very carful of that drug, its a miracle for some but it is death in a pill for others. Roxie

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  12. GcMAF has indeed many uses and research is trying to explore all its possibilities. This may even help those suffering from Cancer and HIV, although it still needs further study. It is hard when people do not understand the fact the having CFS means. Do not lose hope with your illness and stay strong.

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  13. I'm just reading your blog now and I want to say that as a Lyme patient (who was formerly diagnosed with both Chronic Fatigue Syndrome and Fibromyalgia), I can totally relate to your experience with doctors. Unfortunately, it is the same in the world of Lyme disease. Doctors erroneously believe that Lyme is rare, when, in fact, it's the fastest-growing bacterial disease in the country. The CDC admits that there are 300,000 new cases of Lyme in the U.S. every year but that only a mere 10% of them are properly diagnosed and reported--pretty shocking statistics! Doctors also falsely believe that Lyme doesn't exist in certain areas of the country and that Lyme can be easily cured with a short course of antibiotics, which is only (sometimes) true if it's treated in its acute stage. Once it's disseminated throughout the body, it's much more difficult to get under control.

    I am wondering if anyone has considered that you may in fact be suffering from Lyme disease and/or other tick-borne illnesses. The tests are so inadequate (of the 100 known strains of Lyme disease in the U.S., we test only for ONE) that several states have now passed legislation stating that medical practitioners MUST disclose that Lyme is a clinical diagnosis and that a negative test does NOT mean the patient is negative for Lyme disease. Yes, that is now an actual law in some states. If you do decide to explore this route, I recommend finding a Lyme Literate MD (LLMD) who tests through IGeneX Labs. There's also DNA sequencing testing through Milford, CT (your blood can be drawn at any lab). I also think it may be worthwhile to consider a course of antibiotics, if you haven't already, to see if you herx or have any improvement. Then again, with your gut issues, antibiotics might make things worse, so may be too risky. I myself have gut issues so have been trying to get in remission in ways other than antibiotics (including wanting to try GcMAF, which is how I found your blog. By the way, I DO have the "bad" VDR SNP mutation). My gut is finally improving--bone broth has been a huge help as well as chewing zinc carnosine 20 minutes before eating. It took years to figure out that I have Small Intestine Bacterial Overgrowth and also low stomach acid, which I now supplement with betaine HCL. Though I still have many symptoms overall, I am vastly better than when I first became bedridden 3 years ago. Like you, I have been to many doctors and have tried many things.

    If you've already been down these avenues or find these suggestions annoying, I sincerely apologize. I was bedridden with horrible fatigue for 3 months, so I know what it feels like. I could not even stand at my kitchen sink to wash three dishes (one day I got out of bed determined to accomplish at least washing the dishes but I couldn't even do that). Many days I was too tired and weak to even feed myself. When I dragged myself to the doctor's office, I had to sit down in the elevator and lay down during the appointment. It was awful.

    I hope you find your answers soon. Maybe you already have--I haven't read very far in the blog yet! I hope so! A big hug to you.

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