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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 12 of 12. This is the beginning of the thread.
Posted by kazoo on May 11, 2000, at 0:05:37
I'm in a terrible bind.
In 1990, I was diagnosed with HCV (hepatitis C virus). I kept this from everyone because, at the time,
there wasn't much information about it. The GI specialist at UCONN told me not to worry about this, but
just to keep having my liver checked.In 1998, I was diagnosed with Adult-Onset Diabetes (b/g > 400). I was started on a regimen of Glucophage,
Glyburide and Amaryl, all which wrecks the liver.In November 1999, the BITCH that filled in for my psychiatrist (who went back to Russia, I wonder why?),
announced to me that she was discontinuing my medication because (1) she didn't like the protocol, and
(2) I was "too much of a risk." She basically told me to drop dead. You should also know that I've been
seeing a psychiatrist for over 20 years at this same clinic.A few days ago I saw my GI specialist at UCONN who announced to me that (1) my HCV has become
severe and (2) he couldn't treat me with INFERGEN (Interferon alfacon-I) because:
"WARNING: AS WITH OTHER INTERFERONS, INFERGEN SHOULD NOT BE USED IN PATIENTS WITH A HISTORY OF SEVERE PSYCHIATRIC
DISORDERS AND SHOULD BE DISCONTINUED IN PATIENTS DEVELOPING SEVERE DEPRESSION, SUICIDAL IDEATION, OR OTHER SEVERE
PSYCHIATRIC DISORDERS."So he basically told me to drop dead, too.
I called UCONN's Psychiatric unit and explained the situation, but they refused to help because of this HCV and
diabetes.Since I can't get anywhere with these so-called professionals, does anyone have any advice (besides to drop dead!)
(I'm on the skids) kazoo
Posted by JohnL on May 11, 2000, at 4:57:13
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
> A few days ago I saw my GI specialist at UCONN who announced to me that (1) my HCV has become
> severe and (2) he couldn't treat me with INFERGEN (Interferon alfacon-I) because:
> "WARNING: AS WITH OTHER INTERFERONS, INFERGEN SHOULD NOT BE USED IN PATIENTS WITH A HISTORY OF SEVERE PSYCHIATRIC
> DISORDERS AND SHOULD BE DISCONTINUED IN PATIENTS DEVELOPING SEVERE DEPRESSION, SUICIDAL IDEATION, OR OTHER SEVERE
> PSYCHIATRIC DISORDERS."
>Kazoo,
I'm very sorry to hear of your troubles. The worst trouble of them all seems to me to be the doctors themselves. I mean, they don't seem to be interpretting the words correctly.I'm curious and interested...Is your medical treatment for HCV the cause of your depression? I get the sense from your post that it isn't. I get the impression your depression is a different beast unrelated to other treatments. Is that so? Or not? I mean, this has huge implications. Just because a warning says treatment MAY cause depression doesn't mean it WILL. How often do we see things work backwards? People get more depressed on antidepressants sometimes, right? Some drugs that usually make most people feel pretty bad actually make others feel wonderful. You know what I mean? How the heck can these doctors be so egotistical to think they know in advance these things. They don't. They can't.
I truly believe that your unique chemistry deserves a chance to be healed, regardless of any blanket warning label. Since our chemistries are so unique, there's no way everyone is going to react according to what a warning label suggests. In your case, I think all available options should be tried. If the warning turns out to be true with any particular drug, then discontinue immediately and move to another drug. I'm very disappointed in your doctors.
Here's an off-the-wall idea though that I think is worth considering...SAMe supplements. Why? Well, first of all there are dozens or hundreds of European studies showing it really does work in depression. How does it work? Who cares! Does it matter? As long as it works, right? But the other important thing is that SAMe is also a powerful healing substance for the liver. For you, SAMe would be addressing two problems head-on simultaneously. The advantage...no doctors needed...few if any side effects...results fast. The disadvantage...pricey.
On the subject of hepatic conditions, the herbal supplement Milk Thistle would be an excellent thing to take. The primary ingredient in hepatic prescription medications is the same raw ingredient in milk thistle. One controlled study even showed that participants were protected from liver damage by milk thistle after ingesting poisonous mushrooms. I don't think any of us should underestimate the power of Mother Nature. Maybe with some SAMe and some Milk Thistle, and who knows...St Johnswort with it...those doctors can stuff it.
Is there any way you can seek treatment from other doctors besides the ones you're seeing? I would definitely seek a better doctor, if that option exits. And upon leaving--if that's possible--I would not hesitate at all to share my disappointment with them. These doctors need to hear and ponder criticism if they are to learn from mistakes and improve. Otherwise they'll just continue down their egotistical roads unaware. In the meantime, I would seriously ponder SAMe, Milk Thistle, and SJW if I were in your shoes. God didn't put these powerful plants here for nothing.
JohnL
Posted by Noa on May 11, 2000, at 10:11:25
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
What about calling someone at NIH? You are in a severe bind, with several critical illnesses.
Posted by Abby on May 11, 2000, at 11:27:15
In reply to Re: Terrible bind., posted by Noa on May 11, 2000, at 10:11:25
> What about calling someone at NIH? You are in a severe bind, with several critical illnesses.
I don't think that NIH will do referrals. I don't know what kind of insurance you have, but here are a couple of options.
Start by finding a psychiatrist who is willing to work with you despite your need for interferon. Explain your history and the fact that you're having a hard time getting your illnesses treated, because each specialist is afraid of messing up something. Ask the psychiatrist if s/he would be willing to work as part of a team. Call the gastroenterology people from all the Connecticut and New York places---even if you can't make it to their clinics, they may be able to point you in the right direction. Diabetes is a very serious disease, but you should be able to manage it with a good internist. Make sure that your internist is in communication with the others.(I don't know about the SAMe, but try the milk thistle; it can't hurt.)
Call Yale's department of psychiatry for referrals. Then try Columbia, NYU and Albert Einstein Medical College. You might even try UCLA which has a 1-800 number.Also, you can call Johns Hopkins. Their chair is superb.
Good luck. I know it's hard. My Dad has hepatitis c from a blood transfusion (which he got when he underwent coronary bypass) and diabetes too.
Abby
Posted by medlib on May 11, 2000, at 17:00:58
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
> I'm in a terrible bind.
Kazoo--
I'm so very sorry that you have such a rough situation to deal with; I'm outraged for you that medical fools have rendered a bad situation impossible! It's real obvious that the only protocol which they follow is CYA.If you are inclined to deal with medical doctors any further, I believe that a team approach is your only viable option. In your shoes, I would contact the Mayo Clinic, represent myself as an individual whose "medical condition represents a signicant clinical challenge which *requires* a team approach" and seek their earliest appointment. I'm not familiar with what other excellent clinical teams are available, but you can't afford to settle for less than the best. Your team should be headed by a liver specialist, since hepatitis is your most seriously acute disease.
Hepatitis really sucks! Very many years ago I contracted severe hepatitis from multiple blood transfusions and spent over 6 wks confined to bed in isolation (reading liver textbooks as long as I was able, while my liver function levels soared to usually fatal levels). I will not blather on here about liver disease or AOD2, because I don't know what you already know or want to know; I'll just reiterate that most of what helps diabetes hurts the liver and vice versa. You *must* have experts who will talk to each other and to you!
In the meantime, I'd follow JohnL.'s excellent suggestions and also make sure that I was taking choline, inositol, B + C vitamins and folate for the liver, and chromium (picolinate) for the diabetes. I'd be sure to avoid alcohol, Tylenol, aspartame, and exercise. I'd eat a low-salt, low-fat diet rich in complex carbs.
I'd also seek out a friend or family member whom I could trust to understand my situation and honor my wishes. S/he would be my backup when I could not trust my judgement or emotional reactions and would have my (carefully drawn) Durable Power of Attorney for Health Care.
Finally, I'd actively seek out whatever spiritual resources I felt most comfortable with and build a relationship which helps with stress and strengthens the inner spirit. Humor and hope help.
You'll be in my thoughts, kazoo. Let us know how we can help.--medlib
Posted by shar on May 12, 2000, at 20:32:03
In reply to Re: Terrible bind., posted by medlib on May 11, 2000, at 17:00:58
Kazoo,
The only thing I know about livers is "drink lots of water" and don't subject it to a lot of different foods at once (the latter is a home remedy, obviously).
Mainly I wanted to say I'm so angry on your behalf, at the medical community and how they don't listen.
I'm a gonna be a prayin' fer you, boy, so git ready! Here come mah healin' hands....(I'm from Texas with a fundamentalist granny.)
and
I will visualize you with a non-bozohead dr.
Posted by Chris A. on May 12, 2000, at 22:51:32
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
Dear kazoo,
I feel for you. Most hospitals and medical centers in the US have patient representatives or liasion type officers to help get these types of complex problems addressed. Their goal is patient satisfaction. I suggest you contact this person at UCONN and ask for their assistance. If they can't help you at least they should know who can. I agree with others here that say you need a primary care doc that is willing to be your advocate and be in communication with the other team members - coordinate your care with specialists and make sure you get appropriate care. Everyone needs a personal physician - especially when sick. Now I'll get off my soapbox.
Praying for you (seriously).Chris A.
Posted by Noa on May 13, 2000, at 13:21:35
In reply to Re: Terrible bind., posted by Chris A. on May 12, 2000, at 22:51:32
I like the suggestions of contacting team-oriented big places like Mayo or JH. It seems these "centers of excellence" are there for just this purpose--when people have multiple illness that are complicated and that seem to scare off the ordinary docs.
Take care.
Posted by Elizabeth on May 13, 2000, at 15:17:39
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
I really feel for you. That is terrible to feel like it doesn't matter to any of your doctors that you have several very serious illnesses! As if somehow the illnesses cancelled each other out. :-P
I'll add two more phone numbers you could try (and these are actually sort of close to where you live!):
Massachusetts General Hospital (Boston)
617 726 5800 (physician referral)McLean Hospital (Belmont, Mass. -- about 10 or 15 minutes from Harvard Square)
800 333 0338 (main number)Start by explaining that you have multiple medical conditions as well as depression and that you need a psychiatrist who's familiar with your type of situation and the polypharmacy that is required. Mass. General in particular has the advantage that it's a general hospital with a good psych department, so you can get a psych, a GI, and an internist who can work closely with each other.
I know a guy who has hep C, hemophilia, and depression. He manages it with the appropriate meds and lifestyle changes, and yes, the interferon brought out his depression -- he was able to manage it.
Take care of yourself, and don't give up...nothing is more important than your health.
Posted by medlib on May 13, 2000, at 17:12:56
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
> I'm in a terrible bind.
>-------------------------------------Kazoo--I'd like to piggyback Elizabeth's resources with a couple I found on the web re hepatitis C:
The American Liver Foundation has absolutely gobs of info (including a profile on Infergen which lists side effects by percentages--depression=25%). I found the treatment and links especially useful. One home page on that list includes recommended liver specialists by state.
You might be interested in the liver clinic @Henry Ford: www.medhlp.netusa.net/home.html
Please let us know how things are going for you. We care--medlib
Posted by kazoo on May 14, 2000, at 1:06:15
In reply to Terrible bind., posted by kazoo on May 11, 2000, at 0:05:37
> I'm in a terrible bind.
^^^^^^^^^^^^^^^^^^^^^^^^
Thank you JohnL, Noa, Abby, medlib, Shar, Chris A. and Elizabeth for your
support, ideas, collective concern and kind words. I've gained more insight
from your posts than from all the medicine men I've seen so far.In hindsight, though, I wonder if they can really be faulted for what seemingly appears
to be unconcern and/or indecisiveness. My situation *is* risky and tricky. The
way I see it is one of responsibility and no one wants to be responsible if their
treatment fails and I die. I wouldn't blame them if I did, but at least I want the
chance to determine what the outcome might be, good or bad. I just so tired of being
sick all the time.But would you like to know what the very worst thing about this whole affair is?
It's the hopelessness. This feeling that you're in a pit, buried alive.I've printed out all the posts and will make the necessary contacts. But before doing
so, I'm going to inform the medicine men/women I know and tell them what I plan to do,
out of respect for their profession, and to show them that there are many alternatives
to conventional treatments. I also want to let them read the comments and suggestions
by real people living in a real world.I love you all for guiding me to new hope, with the chance at a new life.
I'll keep you informed about this as time goes by (slowly, I hope).I remain (a damaged),
kazoo
Posted by ChrisK on May 14, 2000, at 6:25:04
In reply to Re: Terrible bind. -Thank you, posted by kazoo on May 14, 2000, at 1:06:15
Kazoo,
Although I am late into this thread I can also reccomend Milkthistle for liver problems. I am alcoholic and almost died three years ago from acute toxicity that swelled my liver to 2.5 times the normal size. It was an extremely painful and trying experience. The hospital I was in had an acupucture specialist who would come in for various reasons. She was the one who reccomended Milkthistle (besides by prescribed meds).
I really belive that it is part of the reason that my liver enzymes are starting to stabilize. I am currently using something called "Liver Support Factors." It is available through www.vitamins.com. Just go there and look under the side bar that says liver problems. You may also want to look in a local GNC for Milkthistle.
I can't say for sure that it is the sole reason for my improvements but I really think it has helped me.
Best of luck with whatever you try,
Chris
This is the end of the thread.
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