Aa
psychological effect on hep c severity!!!!
Today I heard the most bizzare thing from a hepatologist (who's not treating me by the way, just a friend!) he said that many people could live for literally decades with hcv lurking in their bodies and is "in-active", meaning: no serious liver damage going on just because they don't know about it, but once for any reason of pure chance they find out, it starts manifesting itself and from that point onwards liver damage and side effects become more worse and noticeable???????????anybody heard about this before??
Clinical heath care specialists and primary care physicians know lots. However, if you are self aware, and know your physiological history and go to see MANY of them. You will be amazed at there "programming" by the pharmaceutical lobbyist.
My first Gasto handed me a packet, she got fro a parm-rep without looking at my blood work period. she reviewed my biopsy for 60 seconds and put me on the flavor of the week. If HCV were more understood, you would see it advertised on the evening news as much a viagra.
It is up to the client (YOU) to look at your blood work, age, race, genotype, autoimmune history grade, stage and ask the difficult questions these doctor's do not want to hear. I followed like a lamb the first time and l almost lost the farm. with a platelet count of 103 I had a liver biopsy one week and started ribo the next. I knew from my heath care background it was a BIG hazard. I have had a history of low platelet count problems for many years.
It is total creamed corn to listen to advice you know is wrong and feels wrong when you start it. There is a connection between mind and body, stress is a precursor for so many maladies the list is impossible to write. I cannot believe the people who have this most serious disease cannot step back and see that these health care people are rushed and often do not have time to review what they should. somebody look up the statistical facts about medical mistakes and your jaw will drop. you'll look long and hard before you find a professional who says screw the system I will take the time to read the charts, document and follow up and make sure their staff knows a little about dosage and calculation.
proactive live the dream. People can be affected ; from stage 1-4, it depends on the underlying other clinical medical issues they have, not just from the neck up, but also their other organ systems and auto immune issues there life long homeostasis has to be added to the picture including lifestyle. all the items listed above determine how and when and how fast you move from stage to stage, some of us like lightning, some of us years and it all leads back to the bodies we are living with and the toxins and immune maladies we have carried.
those of us here for the most part have NOT cleared this blood born virus, so we are not in a place where maybe we need to reevaluate how we see those who are guiding and directing us. those of us who are just starting need this knowledge too.
Lani
My first Gasto handed me a packet, she got fro a parm-rep without looking at my blood work period. she reviewed my biopsy for 60 seconds and put me on the flavor of the week. If HCV were more understood, you would see it advertised on the evening news as much a viagra.
It is up to the client (YOU) to look at your blood work, age, race, genotype, autoimmune history grade, stage and ask the difficult questions these doctor's do not want to hear. I followed like a lamb the first time and l almost lost the farm. with a platelet count of 103 I had a liver biopsy one week and started ribo the next. I knew from my heath care background it was a BIG hazard. I have had a history of low platelet count problems for many years.
It is total creamed corn to listen to advice you know is wrong and feels wrong when you start it. There is a connection between mind and body, stress is a precursor for so many maladies the list is impossible to write. I cannot believe the people who have this most serious disease cannot step back and see that these health care people are rushed and often do not have time to review what they should. somebody look up the statistical facts about medical mistakes and your jaw will drop. you'll look long and hard before you find a professional who says screw the system I will take the time to read the charts, document and follow up and make sure their staff knows a little about dosage and calculation.
proactive live the dream. People can be affected ; from stage 1-4, it depends on the underlying other clinical medical issues they have, not just from the neck up, but also their other organ systems and auto immune issues there life long homeostasis has to be added to the picture including lifestyle. all the items listed above determine how and when and how fast you move from stage to stage, some of us like lightning, some of us years and it all leads back to the bodies we are living with and the toxins and immune maladies we have carried.
those of us here for the most part have NOT cleared this blood born virus, so we are not in a place where maybe we need to reevaluate how we see those who are guiding and directing us. those of us who are just starting need this knowledge too.
Lani
when I said they "don't know much" I meant that in relative terms...if they truly knew a whole lot about this disease, we'd all be doing something else and not typing at a hep c board...
we're on the same page though - re what you said about taking studies, new protocols, etc...to docs...what I usually do is fax things over before my appt, so maybe they have time to look it over before I even get there...that way they can act like they knew all about it, once I show up lol...
to be fair, my doc does stay on top of many of the newer studies, conferences, etc because he's head of the liver dept at my hospital....that's why I often just talk to one of his underlings, he's gone a lot...but he consults on my case, and I see him when he has time...be well...
we're on the same page though - re what you said about taking studies, new protocols, etc...to docs...what I usually do is fax things over before my appt, so maybe they have time to look it over before I even get there...that way they can act like they knew all about it, once I show up lol...
to be fair, my doc does stay on top of many of the newer studies, conferences, etc because he's head of the liver dept at my hospital....that's why I often just talk to one of his underlings, he's gone a lot...but he consults on my case, and I see him when he has time...be well...
also, what doubledose says is so important. hep c can and does effect other major organ systems in the body at a much higher rate than previously thought. The renal system is at particularly high risk. and what doubledose said about the immune system's attack on the virus and its effect on you feel is so appropriate. I believe that this is probably much of why I feel as lousy as I do right now. But research IS out there. New, good research. And I do believe that its up to patients to educate. Doctors are insanely busy people sometimes. Change in protocols is slow. We are the consumers and consumers can direct change.
foreseegood,
actually - i think the experts know a good bit. the doctors just stop reading the experts right after they leave medical school. At least a good many of them do. If I want a certain protocol, I print out every study I can find and take it with me to my appointment. It is very difficult for any physician, when faced with current studies from prestigious institutions, to look a patient in the face and deny the treatment espoused in a well-done, current study. Unless its still in experimental trials of course. I've found that physicians are very seldom unable to justify doing this and I frequently get my way. Its the same with any other issues. Find the studies, take them with you. Of course, you have to present it in a way that allows the physician to save face and think its his/her idea, but still - this has worked for me many times.
Spreading education, one doctor at a time...
actually - i think the experts know a good bit. the doctors just stop reading the experts right after they leave medical school. At least a good many of them do. If I want a certain protocol, I print out every study I can find and take it with me to my appointment. It is very difficult for any physician, when faced with current studies from prestigious institutions, to look a patient in the face and deny the treatment espoused in a well-done, current study. Unless its still in experimental trials of course. I've found that physicians are very seldom unable to justify doing this and I frequently get my way. Its the same with any other issues. Find the studies, take them with you. Of course, you have to present it in a way that allows the physician to save face and think its his/her idea, but still - this has worked for me many times.
Spreading education, one doctor at a time...
Well I am a believer that stress and worry can make things worse. Sometimes I wish I never found out about this. I find myself thinking about it way to much. Even knowing that the vast Majority of people will live their lives without knowledge or symptoms or problems of any kind.
Ron
Ron
we all know hypochondriac types and this explains most of it in my opinion. of course i agree that the doctors statements are very unbecoming of a learned professional. i personally have known about my hep c for ten years and have been 1000% asymptomatic and known many others with the same situation.
double dose,
thats the best simple explanation for symptoms ive seen yet. it explains everything in one fell swoop. thanks for that little gem of wisdom. also, one hepatologist told me that the hep c can just simply impair liver function long before any obvious damage.
so how you been holding up lately? ive recently discovered a new lifestyle recreational/productive activity that has totally turned around my
attitude. since i cant be very active anymore (at least during treatment), ive turned to working on my music library and simple horn practicing. i can do it for many hours a day and it doesnt take so much energy. i feel as if i could live this way forever if i have to and my misery quotient has all but disappeared. i hope that you can find this success in adapting and adjust to your limited function. by all appearances you have already achieved this goal but i had to mention it because its been difficult for me to accept this new disabled life and the prospect of living with it forever. somehow ive broken the chains of entrapment by creating and emphasizing all the things i can still do effectively. it is a great feeling and i hope all of you will take this message and
find your new life. for me its really just as good as the old one, just different.
march forward brave warriors, our ability to adapt always brings us final victory.
double dose,
thats the best simple explanation for symptoms ive seen yet. it explains everything in one fell swoop. thanks for that little gem of wisdom. also, one hepatologist told me that the hep c can just simply impair liver function long before any obvious damage.
so how you been holding up lately? ive recently discovered a new lifestyle recreational/productive activity that has totally turned around my
attitude. since i cant be very active anymore (at least during treatment), ive turned to working on my music library and simple horn practicing. i can do it for many hours a day and it doesnt take so much energy. i feel as if i could live this way forever if i have to and my misery quotient has all but disappeared. i hope that you can find this success in adapting and adjust to your limited function. by all appearances you have already achieved this goal but i had to mention it because its been difficult for me to accept this new disabled life and the prospect of living with it forever. somehow ive broken the chains of entrapment by creating and emphasizing all the things i can still do effectively. it is a great feeling and i hope all of you will take this message and
find your new life. for me its really just as good as the old one, just different.
march forward brave warriors, our ability to adapt always brings us final victory.
Several comments:
Doctors that claim the symptoms of HCV are psychologically induced by the knowledge that we have the disease are absolutely clueless!!!! The vast numbers of people with HCV who were unaware for years that they has HCV, and went to doctor after doctor trying to find a diagnosis for all their symptoms,... that alone proves these 'la-la land doctors' to be not very bright, and also a little frightening to have for a treating physician. If their logic has not taken them through this landscape with a valid conclusion, then how are they going to figure out how to successfully deal with your disease, your tx, and your post-tx issues???
As far as liver damage severity correlating to HCV symptoms, most research over the years shows little to no correlation at all! The symptoms do not come from the liver damage (until maybe the end stage liver disease develops), but instead come from the overall effect of the virus on the body. One possibility is that the virus causes a vast autoimmune reaction (or immune system reaction) in the CNS, brain, joints, gastric system, salivary and lymphatic glands, etc. thus provoking lots of antigens, immune complexes, etc. which all impact these various organs and systems causing nasty symptoms. They may vary from person to person, and range from imperceptable to absolutely crippling.
The other possibility is that the virus itself is causing direct pathology in these organs and systems, and is slowly degrading and deteriorating the various cell structures that are infected, thus causing a range of progressive symptoms.
And another take might consider that both of the above are taking place. The virus attacks and tries to destroy cells, and the body also attacks with immune system weapons, which also cause their own problems for the individual.
All in all, when I hear doctors talking esoterically about the mind-body garbage, I start thinking of them as 'Shaman" or hypnotists, etc. They lose their scientific credibility entirely when they go off on this tangent. Of course what they are implying is also totally unsupported by any research, and is just a mental stab at providing an explanation....hence ends up being the lazy man's (lazy doctor's) way of explaining things. Meanwhile the HCV researchers are out there applying scientific tools and tests to the task, and discovering all sorts of things that the HCV practitioners have been clueless about. Like persistent HCV after SVR, HCV infecting other organs, the link between HCV and a variety of major diseases, etc.
We are forced to figure out far more about the realities of this virus by constant observation, research, reading, discussion, etc. and just plain looking and listening. This is something that many doctors are not good at. Remember, they already have all the answers! Med School 101.
Your responses are God-like. If you say it...it will be true!
DoubleDose
Doctors that claim the symptoms of HCV are psychologically induced by the knowledge that we have the disease are absolutely clueless!!!! The vast numbers of people with HCV who were unaware for years that they has HCV, and went to doctor after doctor trying to find a diagnosis for all their symptoms,... that alone proves these 'la-la land doctors' to be not very bright, and also a little frightening to have for a treating physician. If their logic has not taken them through this landscape with a valid conclusion, then how are they going to figure out how to successfully deal with your disease, your tx, and your post-tx issues???
As far as liver damage severity correlating to HCV symptoms, most research over the years shows little to no correlation at all! The symptoms do not come from the liver damage (until maybe the end stage liver disease develops), but instead come from the overall effect of the virus on the body. One possibility is that the virus causes a vast autoimmune reaction (or immune system reaction) in the CNS, brain, joints, gastric system, salivary and lymphatic glands, etc. thus provoking lots of antigens, immune complexes, etc. which all impact these various organs and systems causing nasty symptoms. They may vary from person to person, and range from imperceptable to absolutely crippling.
The other possibility is that the virus itself is causing direct pathology in these organs and systems, and is slowly degrading and deteriorating the various cell structures that are infected, thus causing a range of progressive symptoms.
And another take might consider that both of the above are taking place. The virus attacks and tries to destroy cells, and the body also attacks with immune system weapons, which also cause their own problems for the individual.
All in all, when I hear doctors talking esoterically about the mind-body garbage, I start thinking of them as 'Shaman" or hypnotists, etc. They lose their scientific credibility entirely when they go off on this tangent. Of course what they are implying is also totally unsupported by any research, and is just a mental stab at providing an explanation....hence ends up being the lazy man's (lazy doctor's) way of explaining things. Meanwhile the HCV researchers are out there applying scientific tools and tests to the task, and discovering all sorts of things that the HCV practitioners have been clueless about. Like persistent HCV after SVR, HCV infecting other organs, the link between HCV and a variety of major diseases, etc.
We are forced to figure out far more about the realities of this virus by constant observation, research, reading, discussion, etc. and just plain looking and listening. This is something that many doctors are not good at. Remember, they already have all the answers! Med School 101.
Your responses are God-like. If you say it...it will be true!
DoubleDose
good post.
once again, I think everybody's right on some points, and no one is totally wrong...
knowing the little I know now, about disease, mind-body connections, individual chemistries and how we can share similarities, and yet so be so different.....
I just think this disease is a big grab-bag of different issues, that play out differently on everyone...What I don't get, is for any one doctor to disavow symptoms of hep c, because of liver damage severity...that always throws me, and so many docs do this, even though so many of us are complaining of the same symptoms, even before we know we have this....unfortunately, the experts just don't know that much yet....Maybe 10 years from that will change.
once again, I think everybody's right on some points, and no one is totally wrong...
knowing the little I know now, about disease, mind-body connections, individual chemistries and how we can share similarities, and yet so be so different.....
I just think this disease is a big grab-bag of different issues, that play out differently on everyone...What I don't get, is for any one doctor to disavow symptoms of hep c, because of liver damage severity...that always throws me, and so many docs do this, even though so many of us are complaining of the same symptoms, even before we know we have this....unfortunately, the experts just don't know that much yet....Maybe 10 years from that will change.
My hubby "knew" something was wrong with him for a couple of years before he was dxed. He went to the dr complaining of fatigue, aches, etc. Dr just put him on thyroid meds, AD's, vitamins, finally, hubby INSISTED on the HCV test, I still don't know why, I think it was due to some research he'd done on the enormous number of Vietnam vets coming out with HCV and the doc actually fought him on doing the test--said it was ridiculous and a waste of time...long story short, all the symptoms he'd had were due to being HCV+. Actually once he knew he had it he felt better and was better able to cope with the fatigue, etc.
And, alagirl--I am also a "migrainer" and after 9 months of tests and seeing more than 10 drs, the dx for my migraines.....stress. This from 10 separate docs with jst about every test you could throw at me. Stress. And it's pharmecueticals that are taking care of them as the stress ain't goin' anywhere!!
And, alagirl--I am also a "migrainer" and after 9 months of tests and seeing more than 10 drs, the dx for my migraines.....stress. This from 10 separate docs with jst about every test you could throw at me. Stress. And it's pharmecueticals that are taking care of them as the stress ain't goin' anywhere!!
Although I do believe in a strong mind/body connection, I don't whole heartedly believe what your friend says. I went to dozens of doctors for 25 years complaining of ill health before dx 2 years ago. I didn't know I had HCV but I knew something was wrong.
This statement is in the category of doctors saying that HVC doesn't cause fatigue. HCV fatigue is akin to the day before coming down with flu, not your general garden variety tiredness that can be relieved with rest.
Kittyface
This statement is in the category of doctors saying that HVC doesn't cause fatigue. HCV fatigue is akin to the day before coming down with flu, not your general garden variety tiredness that can be relieved with rest.
Kittyface
I think its quackery. But then, I really don't believe much in any superstitious type of mind body connection type things. I believe in good old fashioned science, and pharmaceuticals. They've gotten me this far. I got sick before I tested positive, just didn't know why I was ill. I'm a migraineur too and I haven't noticed any effect that stress plays on making that better or worse either. I get them when I'm not stressed and then I can be under terrible stress and not have them. I think they are tied in more to hormones.
No. What he might mean is some combination of these factors:
1) After diagnosis, people attribute any pain, sensation, or physical difficulty to the hepatitis. Example: My partner and I hike a reasonable amount. She was diagnosed on routine bloodwork (not because of a problem related to HCV). After that, and before beginning treatment, she complained of fatrigue much earlier in a hike.
2) Some people are diagnosed, even by "pure chance," because they go to the doctor because they're not feeling well. This may be a sign that the disease is becoming active, but may not yet be manifesting itself in ways that are clearly related to hepatitis. (This could be an alternative explanation for my partner's fatigue).
3) Once people know they have hepatitis, they are likely to be stressed about it. Stress is both physical and psychological, and is hard on the body in general. For example, stress can make diabetes worse.
1) After diagnosis, people attribute any pain, sensation, or physical difficulty to the hepatitis. Example: My partner and I hike a reasonable amount. She was diagnosed on routine bloodwork (not because of a problem related to HCV). After that, and before beginning treatment, she complained of fatrigue much earlier in a hike.
2) Some people are diagnosed, even by "pure chance," because they go to the doctor because they're not feeling well. This may be a sign that the disease is becoming active, but may not yet be manifesting itself in ways that are clearly related to hepatitis. (This could be an alternative explanation for my partner's fatigue).
3) Once people know they have hepatitis, they are likely to be stressed about it. Stress is both physical and psychological, and is hard on the body in general. For example, stress can make diabetes worse.
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