Aa
Where does one go?
Long story, I'll make it short...I am nearly 63 yrs. old. At 24 went two yrs. very ill. City doctors could not identify my illness. Loaded me with antibiotics. 1972 age 27 one Dr. referred me to Scripps Research Foundation. Was a patient there 2 years. Diagnoses: Unidentified agent of virus and learned city doctors were literally killing me with antibiotics poisoning my liver. Sent home No treatment, Doctor said no medications, eat well and I would begin to get better. Went from 80 pounds to normal 125 at 5ft. 2". Worked and raised one child never feeling long hours of energy but high energy when I slept until my body woke on its own. 1995 I was told I have hepatitis C and that this is the unidentified Virus I have had for years. Earlier there was simply no name for it. Today I do not feel well. My awakening hours are few that I feel real well. My liver enzymes are in the 200's. In the past years I have not been able to see a doctor much because I do not have insurance. Due to no insurance and no money to pay for a doctor to be concerned( Except credit cards I refuse to run up) , most seem un interested in my case here in Texas. Today I often feel as I am dying. Although I have never had the other symptoms that go along with Hep C. Never been jaundice, no blotting etc. The doctors I have been to do not recommend treatment due to my body has fought so long they say it may just make me more ill without final good results. I guess I am writing because it seems there is no where for me to get help. I am on social security disability but I do not have medicare as I must wait 2 yrs to receive which is Oct 2008. Doctors did want to do an ultra sound and MRI but no money for this. My question: Is there anywhere I can go to get help or find a doctor that gives a dam? When I do see a doctor they look at me like: Why am I there? You see, I don't look ill. I look healthy but they do not know what I go through at home. I feel like I am dying. When I say this to a doctor, they say I'm depressed. I am not depressed! Many unseen synptoms I feel inside, so much I have gotten my affairs in order and put my house and bank accounts in Trust to my daughter. I refuse to spend what money I want to leave my daughter, along with my house, for the high cost of a doctor who can't really help me. Does anyone know of groups where one can just group with others with the same situations and Hep C? In my opinion I have come to believe that doctors really know so little about the effects of Hep C on their patients, it is senseless to run up doctor bills. They can't do anything to help you live and I don't want to be an experiment. I just wish I had someone to talk too that understood Hep C.
I meant to comment to you earlier. I agree with you how they are more interested in frogs. I really wish you well and hope you sustain. Have you had HEP C a long period? Like when you were young and un-diagnosed like me? And yes, I do take charge of my own destiny. I know some doctors will fill you with meds that can actually kill you. Some do not even know they are experimenting with you, brainwashed by the medical field. My liver doctor told me that the Hep C treatments do not heal but they hide the synptoms sometimes for 6 months to a few years, and it is not cured. He said it is still there and will come back without an absolute cure. He said if I have survived this long without treatment that he thought I could live out my life just as well and probably with better quality of life without treatment. I tend to believe this knowing so many who have treated, been sick from treatment and never cured. I just won't go through that. I believe the good Lord put every natural thing here on earth to cure all.
Gosh, there are more nice and understanding people on this site than I have met in all my years fighting this thing. To Mary4now: No I do not have medicare yet. It took SS two years to approve my case primarily because my stupid doctors in CA never wrote anything on my medical charts. Not even my tests for Hep C. My chart was blank except for once when I went for an eye infection. And my doctor in CA was supposed to be a liver specialist. I will have medicare in October as that will be the two year waiting period SS requires. I think the only reason my case was approved is because I sent my record from Scripps showing I was disabled for the same thing years earlier, which my doctor wroted I would be disabled for life until the agent or a cure was found.
I have to say I think all you taking medications are very brave, but I understand the hope in getting well. To have HCV at a young age with children I know is devastating to your life. I only had one child to raise as my husband died at a young age. But with two or three children I know it is very hard. Or simply being young and limited with HCV is devastating affects on your daily life.
When I say I get brain fog, it is more a weakness all over my body. I just want to sleep. Oh and by the way, my doctor did take the blood tests showing I had active HCV but her never told me all those things like geno type etc. I simply do not understand all that number talk. I am sure he may of told me the geno type but I can not remember. My doctors here never take a real interest in my case. I think because I don't have insurance.
I no longer get depressed because I HCV. I get depressed over issues out of my control. Like the other day I watched a video someone sent about animal cruelty and it show how the slaughter houses and farmers treat animals. One part they showed how they cage a cow and hold their testicles and just slice them off while the cow is screaming in pain without pain killers. And how they use animals for universities and how mistreated so many wonderful animals are tortured. I sat and sobbed most the day praying for God to help them. There are just so many issues in this world I can not tollerate anymore. No matter how much you give to a cause, it goes on and on. If I were super rich I would buy the slughter houses and end the torture of animals.
I know I must stay alive for my daughter and grandson. But I also know the Lord will not take me before my daughter can handle it. I don't want to leave them, but when the time comes I can no longer be joy in their lives, and perhaps a burden, I would rather go. As it stands now I have a sadness over life issues, that somehow just can not be remedied by the joy of my family. Their are people and animals being tortured by humans that should be stopped. And for some reason, I feel the pain for them, I want to do something about it and I can't. I'm faced with the reality of what goes on in life everyday, and it is just so much that it ripps at my heart. That's probably why I have more dogs at home than the city allows. But no one ever says anything because I take such good care of them.
I have 6 dogs and am getting one more. My dogs have their own room in my house with a stone floor and puppy pads they are trained to go at night, and each have their own bed.. They are all on heartworm meds and flea control meds. They are loved and very well behaved. People are amazed how controlled my dogs are and do not bark and bother neighbors. It is as though they understand my every word. When I say it''s bedtime, they all go running to their room, except my Black Lab who has the run of the house for my protection. The others stay in their room all night til I awake. People are amazed that my home is very clean even thought I have dogs. I installed stone floors throughout especially for my dogs except my room and the guest room where they are not alowed and I vacumm everyday for dog hairs.and mop the floors.
Well I guess I am babbling now. It's just that I love my animals so much. I wish I could recue more. So I do have a lot to live for. But I have made arrangements to my dogs too should something happen to me.
But I may look into the trials you speak of. Perhaps then I could know for sure what is going on with my body. But it's just that I am not open to taking medications/ foreign substances. And the chineese herbs I do not think are hurting me.. I actually ran out of the herbs for a couple months and my enzymes went way up. then when I began to take them again, they went from to 200's to 90. But right now, I am not sure if anything is helping because the last time I went I was back in the 200's. Can someone tell me is the 200's considered high or real bad?
And Trish, I really have to applaud you. Three children? It has to be tough for you. I know how hard it was for me with one. I know you mush have moments where you just pray to raise your children and get well. God will Bless you, I know.
I have to say I think all you taking medications are very brave, but I understand the hope in getting well. To have HCV at a young age with children I know is devastating to your life. I only had one child to raise as my husband died at a young age. But with two or three children I know it is very hard. Or simply being young and limited with HCV is devastating affects on your daily life.
When I say I get brain fog, it is more a weakness all over my body. I just want to sleep. Oh and by the way, my doctor did take the blood tests showing I had active HCV but her never told me all those things like geno type etc. I simply do not understand all that number talk. I am sure he may of told me the geno type but I can not remember. My doctors here never take a real interest in my case. I think because I don't have insurance.
I no longer get depressed because I HCV. I get depressed over issues out of my control. Like the other day I watched a video someone sent about animal cruelty and it show how the slaughter houses and farmers treat animals. One part they showed how they cage a cow and hold their testicles and just slice them off while the cow is screaming in pain without pain killers. And how they use animals for universities and how mistreated so many wonderful animals are tortured. I sat and sobbed most the day praying for God to help them. There are just so many issues in this world I can not tollerate anymore. No matter how much you give to a cause, it goes on and on. If I were super rich I would buy the slughter houses and end the torture of animals.
I know I must stay alive for my daughter and grandson. But I also know the Lord will not take me before my daughter can handle it. I don't want to leave them, but when the time comes I can no longer be joy in their lives, and perhaps a burden, I would rather go. As it stands now I have a sadness over life issues, that somehow just can not be remedied by the joy of my family. Their are people and animals being tortured by humans that should be stopped. And for some reason, I feel the pain for them, I want to do something about it and I can't. I'm faced with the reality of what goes on in life everyday, and it is just so much that it ripps at my heart. That's probably why I have more dogs at home than the city allows. But no one ever says anything because I take such good care of them.
I have 6 dogs and am getting one more. My dogs have their own room in my house with a stone floor and puppy pads they are trained to go at night, and each have their own bed.. They are all on heartworm meds and flea control meds. They are loved and very well behaved. People are amazed how controlled my dogs are and do not bark and bother neighbors. It is as though they understand my every word. When I say it''s bedtime, they all go running to their room, except my Black Lab who has the run of the house for my protection. The others stay in their room all night til I awake. People are amazed that my home is very clean even thought I have dogs. I installed stone floors throughout especially for my dogs except my room and the guest room where they are not alowed and I vacumm everyday for dog hairs.and mop the floors.
Well I guess I am babbling now. It's just that I love my animals so much. I wish I could recue more. So I do have a lot to live for. But I have made arrangements to my dogs too should something happen to me.
But I may look into the trials you speak of. Perhaps then I could know for sure what is going on with my body. But it's just that I am not open to taking medications/ foreign substances. And the chineese herbs I do not think are hurting me.. I actually ran out of the herbs for a couple months and my enzymes went way up. then when I began to take them again, they went from to 200's to 90. But right now, I am not sure if anything is helping because the last time I went I was back in the 200's. Can someone tell me is the 200's considered high or real bad?
And Trish, I really have to applaud you. Three children? It has to be tough for you. I know how hard it was for me with one. I know you mush have moments where you just pray to raise your children and get well. God will Bless you, I know.
"It would just be nice if there were a place one could go to communicate with others like me and give friendship and support. "
You have found that place Suzy. People here really do understand and will support you.
You are in my prayers.
You have found that place Suzy. People here really do understand and will support you.
You are in my prayers.
If you don't know for sure if you have Hep C .. get a PCR done. That will tell you if you have active virus. Then you will know. It's a blood test, that's all it is. It will tell you what Genotype you are ... which, come to think of it, you haven't actually said. The trial I quoted you is for treatment naive Genotype 1's.
I read every word you said and I hear you in that you feel that the treatment will do you harm. However, if the trial doctors don't think so, they'll accept you. And believe me, they won't take you in unless you are a good candidate for the trial.
As for your age, I checked that before I posted to you. :) That trial takes up to 70 years old, so you're still good there.
You sound tired and worn out. I understand that. I am the sole parent for my three young adult kids and being the one and only they turn to for everything is a huge responsibility. You sound like you've done an excellent job and I applaud you for that.
So here's the thing. Your daughter is 38 and your grandson is a wee thing. They will need you til the day the Lord chooses to take you home. I understand this is a very personal decision you are making. I just really really need to say to you ... is this time to dig a little deeper and go at the good fight yet once again? To take a deep breath ... and armed with new information and a support group here to share what we know and help where we can ... to pick up the fighting spirit and try another kick at the can?
I should tell you that I am in a drug trial at the moment. I get excellent care and my drugs are free. If I am not successful, my next round of treatment is covered by the trial. Not all of them are like that but mine is. I went in the trial for the chance at a drug that gives me a higher percentage of cure rate - from 40 - 50% up to closer to 90% at the upper level. My three kids are really hoping for a good outcome here and for their sake .. so am I. Honestly, life has been very hard for me and there are times they are the only thing that has made it worth fighting for and my GOD, they are SO worth it. I have had to fight all through my life to overcome a number of things .. and I'm still at it. :) I get the tired thing. I really do. And that's when I just have to rest for awhile .. and then dig down deep yet again .. and go at it again. Have never regretted that I kept on trying. Not ever.
Nobody has had to live your life but you. And if you decide treatment is simply not for you .. then we'll try to provide what info we know on how to live as healthy as possible.
Regardless of what you decide.....I'm so very much thinking of you.
Trish
I read every word you said and I hear you in that you feel that the treatment will do you harm. However, if the trial doctors don't think so, they'll accept you. And believe me, they won't take you in unless you are a good candidate for the trial.
As for your age, I checked that before I posted to you. :) That trial takes up to 70 years old, so you're still good there.
You sound tired and worn out. I understand that. I am the sole parent for my three young adult kids and being the one and only they turn to for everything is a huge responsibility. You sound like you've done an excellent job and I applaud you for that.
So here's the thing. Your daughter is 38 and your grandson is a wee thing. They will need you til the day the Lord chooses to take you home. I understand this is a very personal decision you are making. I just really really need to say to you ... is this time to dig a little deeper and go at the good fight yet once again? To take a deep breath ... and armed with new information and a support group here to share what we know and help where we can ... to pick up the fighting spirit and try another kick at the can?
I should tell you that I am in a drug trial at the moment. I get excellent care and my drugs are free. If I am not successful, my next round of treatment is covered by the trial. Not all of them are like that but mine is. I went in the trial for the chance at a drug that gives me a higher percentage of cure rate - from 40 - 50% up to closer to 90% at the upper level. My three kids are really hoping for a good outcome here and for their sake .. so am I. Honestly, life has been very hard for me and there are times they are the only thing that has made it worth fighting for and my GOD, they are SO worth it. I have had to fight all through my life to overcome a number of things .. and I'm still at it. :) I get the tired thing. I really do. And that's when I just have to rest for awhile .. and then dig down deep yet again .. and go at it again. Have never regretted that I kept on trying. Not ever.
Nobody has had to live your life but you. And if you decide treatment is simply not for you .. then we'll try to provide what info we know on how to live as healthy as possible.
Regardless of what you decide.....I'm so very much thinking of you.
Trish
Suzy,
Please do not give up on life! Great you’re not afraid of death. (I'm chicken myself). But you have your daughter to live for and other people around you too, I'm sure.
I liked Mike advice. There is help out there even if it is in another country. There are many good caring doctors who will help you. Please try to find them and ask them for their help. I have some excellent docs here in SF. San Francisco has free or very low cost services available. I'm sure somewhere not too far from you there are similar programs.
But you must try to be positive and go out and try to seek help. Don't give up. Please love yourself enough to help yourself. Do it for your daughter if not yourself.
Remember medicine has advance light years since the early 1970s when you were at Scripps. Remember that at that time very little was known about "non-A non-B hep". It was the dark ages as far as HCV was concerned. I know. I was inflected with HCV abd HBV I believe in 1970.
Question: When you say I feel like I'm dying. What do you mean? Do you have a feeling that something inside you is killing you? Eating your insides? Maybe rotting your brain. I had a similar experience when I was in my 20's. Turns out I had major clinic depression. THERE IS NO SHAME IN THAT. I got treated and never knew how happy, healthy and wonderful life could be. I was a lot easier to treat my depression then my HCV.
Anyway... you need a knowledgeable and caring doctor who will find out just what is causing your suffering and then treat you with the best treatments available. You deserve as much. Believe you deserve to be helped. Money is not the value of a person. It's your heart and soul that matters to the people around you.
Never let anyone tell you don't deserve to be treated with respect and dignity!
I think you got a lot of great feedback from others. See people really do care about you!
Hector
Please do not give up on life! Great you’re not afraid of death. (I'm chicken myself). But you have your daughter to live for and other people around you too, I'm sure.
I liked Mike advice. There is help out there even if it is in another country. There are many good caring doctors who will help you. Please try to find them and ask them for their help. I have some excellent docs here in SF. San Francisco has free or very low cost services available. I'm sure somewhere not too far from you there are similar programs.
But you must try to be positive and go out and try to seek help. Don't give up. Please love yourself enough to help yourself. Do it for your daughter if not yourself.
Remember medicine has advance light years since the early 1970s when you were at Scripps. Remember that at that time very little was known about "non-A non-B hep". It was the dark ages as far as HCV was concerned. I know. I was inflected with HCV abd HBV I believe in 1970.
Question: When you say I feel like I'm dying. What do you mean? Do you have a feeling that something inside you is killing you? Eating your insides? Maybe rotting your brain. I had a similar experience when I was in my 20's. Turns out I had major clinic depression. THERE IS NO SHAME IN THAT. I got treated and never knew how happy, healthy and wonderful life could be. I was a lot easier to treat my depression then my HCV.
Anyway... you need a knowledgeable and caring doctor who will find out just what is causing your suffering and then treat you with the best treatments available. You deserve as much. Believe you deserve to be helped. Money is not the value of a person. It's your heart and soul that matters to the people around you.
Never let anyone tell you don't deserve to be treated with respect and dignity!
I think you got a lot of great feedback from others. See people really do care about you!
Hector
Reading all the posts to you, and some of them have very good information. Please don't discount trials. have you checked the website suggested? Many of them are open for patients up to 65 - they put the criteria on the site. Youa re treatment naive and that is a big plus. It may be easier than you think to participate in a trial.
http://tinyurl.com/6mjql2
The other thing is that October 2008 is just around the corner. It sounds like you are taking a pretty healthy regiment of herbs -- although I would nix the chinese herbs (there are forum members -jmjm included -who have really elevated their liver enzymes on those chinese herbs. At any rate, in October when your medicare kicks in, you can go to a hepatologist, get a biopsy and start treatment.
There is one member here who treated at age 65 - andiamo - and, so far has cleared (hopehope hope). I treated at 58/59 and failed treatment. Now I am 60 and am sure I will be treating again, sometime this side of 65. So, there is hope. Are you close to any big cities? The hepatologist I go to in Dallas does trials. There are several centers in Houston that have trials, and I have talked to the center in San Antonio that Trish referred to. Give that a try
frijole, a fellow texan
http://tinyurl.com/6mjql2
The other thing is that October 2008 is just around the corner. It sounds like you are taking a pretty healthy regiment of herbs -- although I would nix the chinese herbs (there are forum members -jmjm included -who have really elevated their liver enzymes on those chinese herbs. At any rate, in October when your medicare kicks in, you can go to a hepatologist, get a biopsy and start treatment.
There is one member here who treated at age 65 - andiamo - and, so far has cleared (hopehope hope). I treated at 58/59 and failed treatment. Now I am 60 and am sure I will be treating again, sometime this side of 65. So, there is hope. Are you close to any big cities? The hepatologist I go to in Dallas does trials. There are several centers in Houston that have trials, and I have talked to the center in San Antonio that Trish referred to. Give that a try
frijole, a fellow texan
I think at this point what you need is a biopsy and the trials sound great for you, that you can receive the biopsy as well. My biopsy cost close to 3K that was total. I dont think the ultrasound is as important although it can show masses relating to cancer. The blood tests are really important and those came to a little over 1K for me. I still have insurance from the job I was fired from, although I pay the FULL price for the next few months then I'm in limbo. But I was able to get all the tests done and have geno 1, stage 1, and am waiting to treat.
I did get to see all the costs for the tests though, it sucks, because the ins. co only allows a certain amount, the provider accepts that, I pay a co pay or %, plus I pay my deductible. But someone w/o insurance has to pay the full amount, even more than what the insurance co. allows.. I dont get it. Why dont they just put a siphon to our bank account then attach it to our bodies and suck us dry. I'm a little disgusted w/ our greedy System. I am sure though that there are those who want to help, we just have to find them... The info you got on the trials sounds very helpful though, makes me feel good. Take care, good luck and find your support. Mary
I did get to see all the costs for the tests though, it sucks, because the ins. co only allows a certain amount, the provider accepts that, I pay a co pay or %, plus I pay my deductible. But someone w/o insurance has to pay the full amount, even more than what the insurance co. allows.. I dont get it. Why dont they just put a siphon to our bank account then attach it to our bodies and suck us dry. I'm a little disgusted w/ our greedy System. I am sure though that there are those who want to help, we just have to find them... The info you got on the trials sounds very helpful though, makes me feel good. Take care, good luck and find your support. Mary
Another thought, It is great just to have you all to communicate with. It's very comforting to write and not get a negative response. Thank you all and God Bless.
Thanks for all the information. I think what has kept me able to work and raise my daughter all these years is, one doctor at Scripps Research Foundation in 1974 had advised me to take herbs and vitamins and no processed foods. . I take a handfull of Herbs everyday....Q-10, Nu-Liver, Milk thistle, Apha Lopic Acid, Folic Acid, Herbal Multiple (no Iron) B-12, and other herbs formulated by a chineese doctor in NYC. They have helped me over the years. My daughter is now 38 years old and I have lived long enough to see my grandson enter his 2nd year of college. You see I have reached some of my major goals concerning my daughter and my precious grandson, helping them in this not so easy world. I am not up to going through tests, traveling anywhere, or making myself sick trying to get well. I am content in my comfortable home and accept what the Lord may have in my path. I know prayer is stronger than any medication. My contentment comes from knowing I can leave some security to my daughter and grandson should I pass. I will not let anything distroy what I have built up all these years. As for the trials, I do not think they would accept me due to my age (63 October), arthritis, osteoporosis, and other conditions. I believe my body has fought this disease so long now, that tollerating any foreign substnces into my body for experiment would not benefit me. When I was at the research center, all the doctors told me that any foriegn substances into the body,(even an aspirin) the body immediately begins to fight off the substance. With me my blood becomes confussed and begins to eat my red cells with medications creating a form of Cytomegalo Virus. My immune system not only devours the foriegn substances but begins to eat my red cells. When my blood is tested, my only negative that ever comes back is high enzymes and they say active Hep C. Test for all other diseases are all negative. I really do not think they really know it is Hep C for sure without a bioptsy or some other form of test. It could be it is still an unidentifiied agent as Scripps said in the beginning. I do know that after having 7 years of being really ill when I was in my twenties and early thirties, I bounced back and worked many hours, rode my horse in shows and was very active. I began to go down hill slowly in my forties. But I have always had to sleep each night and awake on my own for my body to feel well enough to venture through the day. If I am woke before my body is ready to wake, I feel terrible all day, listless and tired. Sometimes brain fog if I do not sleep until I awake on my own. So I have never awoken to an alarm clock, nor have I ever taken a job that required me to be anywhere at a certain time. Luckily, my profession left me able to plan my own days accordingly. But it has always been difficult to explain to others why I can not do something or be somewhere in the early morning hours. People simply do not understand if I was to say I was ill. As I said, I do not look ill and appear the picture of health, which is why many doctors do not believe I am as ill as I often feel. Nowadays, they want to say it's all in the mind, or you're bi-polar etc. Regardless of the Hep C tests that come back, doctors still look at me like...."Oh your not a bad case, Just get your rest." So I have just about given up on doctors. If I could afford it today, I would return to Scripps, but even back then it cost $3000 a day. I had good insurance then and actually lived inside the hospital with a room like a hotel for months at a time over a two year period. They even discussed my case at a doctors siminar and my case has been written up in the reseach books at Scripps without a final diagnoses. I am thinking about contacting them, since they were very interested in my case and wanted to learn more about my condition over the years. But my main doctor there has since retired. So today it would probably cost me to return. And I imagine the cost is much more today. But I will see about the support groups in my area. there must be some, somewhere.
Here I am again. Your situation was on my mind and I came back in to post again and read Jim's post to you all over again.
That is excellent advice and information on his part. That you have doctors that tell you that because you have lived with the Hep C for many years will cause you to get worse if you do treatment is cr@p, based on that reasoning alone. Many who have treated successfully and are treating have potentially had this for 20+ years. Again, I think Jim's post is excellent advice and I'm sorry you've had that sort of care all this time.
There is also the Telaprevir trial to consider and I've said enough on that. :)
Aside from that, what I came back on to post to you .. is that you will notice a few threads going on right now that are talking about "supplemental" things that can be taken. You might want to check those out too. A number have successfully brought down their viral load and improved their blood results. This is NOT a cure .. it is a way of mitigating the amount of ongoing damage.
Good luck to you .. I hope you post back and let us know how you're making out.
Trish
That is excellent advice and information on his part. That you have doctors that tell you that because you have lived with the Hep C for many years will cause you to get worse if you do treatment is cr@p, based on that reasoning alone. Many who have treated successfully and are treating have potentially had this for 20+ years. Again, I think Jim's post is excellent advice and I'm sorry you've had that sort of care all this time.
There is also the Telaprevir trial to consider and I've said enough on that. :)
Aside from that, what I came back on to post to you .. is that you will notice a few threads going on right now that are talking about "supplemental" things that can be taken. You might want to check those out too. A number have successfully brought down their viral load and improved their blood results. This is NOT a cure .. it is a way of mitigating the amount of ongoing damage.
Good luck to you .. I hope you post back and let us know how you're making out.
Trish
Suzy,
Right now in Texas they are recruiting for a particular trial that you have a chance of getting into perhaps. Worth a try? A year of free treatment for the chance at a cure? What happens in a trial when they screen you .. is that they send you for a biopsy and they do your blood tests where you will get your genotype and your viral load. Even if you don't get accepted, it will be more information than you have and it will be free. If you DO get accepted, your drugs and top medical care is free.
Here is a link to clinicaltrials.gov
Click on "Search for clinical trials" then the Advanced Search tab
In the "Search Terms" box, put in HCV
For Recruitment, select "Open Studies"
Enter your State
Check your age group so that children and seniors won't be included.
I want to bring your attention to Trial #19 - at least on the list I brought up. This is for Phase III Telaprevir and the one that you will find that many here are currently excited about and many are being recruited into. Phase III trials are the safest trials as the bulk of the testing bugs have been worked out in the Phase I and Phase II trials that have gone before. The Telaprevir trial has shown great promise so far.
If it doesn't come up as Trial #19, when you search it, this is what it is called:
A Phase 3 Study of Telaprevir in Combination With Pegasys® and Copegus® in Treatment-Naive Subjects With Genotype 1 HCV
You are considered to be "treatment naive" because you've never had treatment before.
Even if you don't understand much of what I've said, here is the contact information for the Telaprevir trial in Texas. Tell them that you have HCV and that you have never had treatment and you'd like to be considered for this trial - IF you are interested in pursuing it:
Alamo Medical Research Recruiting
San Antonio, Texas, United States, 78215
Contact: Eric J Lawitz, MD 210-253-3426
And look for a support group in your area. Someone said to call Public Health. They should know where your support groups are. Anyone in Texas know of any?
Keep talking to us, Suzy. And I wish you the best of luck.
Trish
Right now in Texas they are recruiting for a particular trial that you have a chance of getting into perhaps. Worth a try? A year of free treatment for the chance at a cure? What happens in a trial when they screen you .. is that they send you for a biopsy and they do your blood tests where you will get your genotype and your viral load. Even if you don't get accepted, it will be more information than you have and it will be free. If you DO get accepted, your drugs and top medical care is free.
Here is a link to clinicaltrials.gov
Click on "Search for clinical trials" then the Advanced Search tab
In the "Search Terms" box, put in HCV
For Recruitment, select "Open Studies"
Enter your State
Check your age group so that children and seniors won't be included.
I want to bring your attention to Trial #19 - at least on the list I brought up. This is for Phase III Telaprevir and the one that you will find that many here are currently excited about and many are being recruited into. Phase III trials are the safest trials as the bulk of the testing bugs have been worked out in the Phase I and Phase II trials that have gone before. The Telaprevir trial has shown great promise so far.
If it doesn't come up as Trial #19, when you search it, this is what it is called:
A Phase 3 Study of Telaprevir in Combination With Pegasys® and Copegus® in Treatment-Naive Subjects With Genotype 1 HCV
You are considered to be "treatment naive" because you've never had treatment before.
Even if you don't understand much of what I've said, here is the contact information for the Telaprevir trial in Texas. Tell them that you have HCV and that you have never had treatment and you'd like to be considered for this trial - IF you are interested in pursuing it:
Alamo Medical Research Recruiting
San Antonio, Texas, United States, 78215
Contact: Eric J Lawitz, MD 210-253-3426
And look for a support group in your area. Someone said to call Public Health. They should know where your support groups are. Anyone in Texas know of any?
Keep talking to us, Suzy. And I wish you the best of luck.
Trish
Thank you Mike. That was very interesting information. If I were younger I might think of another place as an option. However, at this point in my life I am really not afraid to die, And I do not want to travel. It would just be nice if there were a place one could go to communicate with others like me and give friendship and support. I so believe in the Lord, and I often feel very tired of dealing with HCV. I don't give up, I simply put my life in the hands of the Lord. My only real concern is to leave everything I have worked my entire life to achieve to my daughter, knowing she will be okay financially when I am gone. I have prepared her for what I feel will occured at some point. I just refuse to rack up bills I can not afford, threatening my assets for a disease that is not cureable. Yes I often suffer, but I know the Lord is with me. No more suffering than I can bare. I still have good days, but the good days get shorter and shorter and less often. I accept this. I see this world as so ugly and full of greed, it's not appealing to me to stay too long. I always help people with my blessings, and if I were rich I would help others so much more from plights occuring in this wealthy country, like homelessness of others. This is so intollerable for me to see, knowing the president spends one million a week just on a limo. Disgusting. Don't get me wrong, I love life, but I am not affraid to die. When my time comes, so be it. There are too many issues I can no longer tollerate to even think about, knowing my voice is deaf to those in charge. I woulld hate to see this world in another 20 years and just pray my loved ones younger than me will be okay with continued faith in the Lord. But thank you much for your information. Just goes to show you this country may not be as free and the best as they tell.
I understand your predicament perfectly, Suzy. In the U.S., medicine is for those who can pay for it, and that goes for insurance, too, which is not free.
All the things the others in the forum have suggested are good ideas and you should try to do them: University teaching hospitals, drug trials, etc.
But if you don't find any solution, there is one final thing to do: Go to a country where there is free or cheap public medical care. I know that sounds drastic, but then your situation sounds drastic.
I'm in almost the same boat as you. I'm a New Yorker, 64 years old, with no medical insurance. I am being treated for hepatitis in a private hospital in Buenos Aires, on their health plan which costs me $1,200 a year. Yes, you read that right.
Let me tell you how I got into this. Four years ago my dentist in New york told me I had to have most of my teeth out and either implants or dentures done, and that it would cost me $120,000 for implants and $40,000 for dentures. I didn't have the money, so I went to Argentina to have the work done. The airfare is around $1,000 round-trip and hotels and food are cheap. I've had implants done there, the best solution. For twelve implants and sixteen crowns, I paid less than $10,000. For what they wanted $120,000 here.
Since I had to be in Buenos Aires for the dental work, I joined a hospital health plan at the Italian Hospital in Buenos Aires, a big hospital with all the modern labs and diagnostic equipment, and a big staff.
Three months ago I went in about some intestinal problemsand was sent right away to see a gastroenterologist, who ordered the whole gamut of blood tests, everything you can think of: hemogram, hepatogram, GGT, creatinine, HIV, HCV, HAV, HBV antibodies, the works. Four pages of results, for over thirty different blood tests. All paid for by the health plan, which, as I say, is costing me $1,200 a year. The results took only five days, and I got a copy of them, because in Argentina the test results belong to the patient.
When the gastro saw I had a positive result for Hepatitis C, she immediately signed me up for an appointment with a hepatologist and ordered a PCR to confirm the HCV antibody test, an HCV genotype test, as well as repeats on all the liver markers.
So far, I've seen three different hepatologists there, including the head of the Hepatology Department (yup, they have a whole Department of Hepatology with over twenty specialists). I am slated for endoscopy and ecodoppler in early May, followed by biopsy and antiviral treatment, all on the plan. I can go in and see one of the hepatologists or gastroenterologists any time I want, just by calling up in the morning. And everyone treats me real nice.
Also, as there are only 1% of Argentines infected with HCV , as compared to around 3% here, there are a lot more transplant organs available. And the Hepatology Department of the Italian Hospital is the leader in liver transplantation in Argentina.
So, if it's a choice between staying in the U.S. and dying of cirrhosis or liver cancer, or going to Argentina or another country where medicine is considered a right and a public service, I'd give it some very serious thought if I were you. You may not be able to join the Italian Hospital for treatment for a pre-exisiting condition, you'd have to check about that. But there are seven public health hospitals in Buenos Aires that you don't need anything to get treated at, just walk in and say you're sick. Three of those also have big Hepatology Departments. And if they charge you for anything, it's basically at their costs. For example, the University Hospital offered to do the blood tests prior to biopsy for me for eight dollars, and the biopsy itself for fifty. Yup, $50. A CAT scan, which can run as much as $5,000 in New York, costs around $300 at the best private lab in Buenos Aires. I know, because I checked it out a month ago, as an alternate diagnostic before antiviral treatment, just before coming back to New York for this visit.
If you're down to your last resort, keep this in mind. It's not the whole world that's trying to get rich off disease. If no one will help you in Texas or anywhere else in the States, don't just sit at home waiting to die. There are places where someone will help you.
Mike
All the things the others in the forum have suggested are good ideas and you should try to do them: University teaching hospitals, drug trials, etc.
But if you don't find any solution, there is one final thing to do: Go to a country where there is free or cheap public medical care. I know that sounds drastic, but then your situation sounds drastic.
I'm in almost the same boat as you. I'm a New Yorker, 64 years old, with no medical insurance. I am being treated for hepatitis in a private hospital in Buenos Aires, on their health plan which costs me $1,200 a year. Yes, you read that right.
Let me tell you how I got into this. Four years ago my dentist in New york told me I had to have most of my teeth out and either implants or dentures done, and that it would cost me $120,000 for implants and $40,000 for dentures. I didn't have the money, so I went to Argentina to have the work done. The airfare is around $1,000 round-trip and hotels and food are cheap. I've had implants done there, the best solution. For twelve implants and sixteen crowns, I paid less than $10,000. For what they wanted $120,000 here.
Since I had to be in Buenos Aires for the dental work, I joined a hospital health plan at the Italian Hospital in Buenos Aires, a big hospital with all the modern labs and diagnostic equipment, and a big staff.
Three months ago I went in about some intestinal problemsand was sent right away to see a gastroenterologist, who ordered the whole gamut of blood tests, everything you can think of: hemogram, hepatogram, GGT, creatinine, HIV, HCV, HAV, HBV antibodies, the works. Four pages of results, for over thirty different blood tests. All paid for by the health plan, which, as I say, is costing me $1,200 a year. The results took only five days, and I got a copy of them, because in Argentina the test results belong to the patient.
When the gastro saw I had a positive result for Hepatitis C, she immediately signed me up for an appointment with a hepatologist and ordered a PCR to confirm the HCV antibody test, an HCV genotype test, as well as repeats on all the liver markers.
So far, I've seen three different hepatologists there, including the head of the Hepatology Department (yup, they have a whole Department of Hepatology with over twenty specialists). I am slated for endoscopy and ecodoppler in early May, followed by biopsy and antiviral treatment, all on the plan. I can go in and see one of the hepatologists or gastroenterologists any time I want, just by calling up in the morning. And everyone treats me real nice.
Also, as there are only 1% of Argentines infected with HCV , as compared to around 3% here, there are a lot more transplant organs available. And the Hepatology Department of the Italian Hospital is the leader in liver transplantation in Argentina.
So, if it's a choice between staying in the U.S. and dying of cirrhosis or liver cancer, or going to Argentina or another country where medicine is considered a right and a public service, I'd give it some very serious thought if I were you. You may not be able to join the Italian Hospital for treatment for a pre-exisiting condition, you'd have to check about that. But there are seven public health hospitals in Buenos Aires that you don't need anything to get treated at, just walk in and say you're sick. Three of those also have big Hepatology Departments. And if they charge you for anything, it's basically at their costs. For example, the University Hospital offered to do the blood tests prior to biopsy for me for eight dollars, and the biopsy itself for fifty. Yup, $50. A CAT scan, which can run as much as $5,000 in New York, costs around $300 at the best private lab in Buenos Aires. I know, because I checked it out a month ago, as an alternate diagnostic before antiviral treatment, just before coming back to New York for this visit.
If you're down to your last resort, keep this in mind. It's not the whole world that's trying to get rich off disease. If no one will help you in Texas or anywhere else in the States, don't just sit at home waiting to die. There are places where someone will help you.
Mike
I have been to several doctors here in Texas just over the past year. Paid out of pocket for blood work. One doctor refused to see me because I was on social security disability, even though I told him I would pay cash. I could only guess he thought he couldn't charge me enough money. The others take test and tell me I have active Hep C and recommend nothing beyond tests, test, test. Each time I did blood work it cost me $500. I have spent $1,500 just on blood work. I can just imagine what it would cost for the MRI , Ultra sound or bioptsy. I can not afford it without racking up credit cards and being in debt for the rest of my life, which the stress alone would probably kill me. I tried to get my own medical insurance but they want each month nearly half the amount I get on SS. Can't afford it. I can't get any other assistance because I own my home free and clear, which is how I want to keep it for my daughter. Good doctors????? Good doctors care about the health of a patient and not the money. The last time I made an appointment with my doctor, they called me the day before and asked why I wanted to see the doctor. I felt like saying: Because I feel terrible and I have Hep C, what do you think I want to see the doctor for? They told me there was nothing they could do for me without insurance unless I wanted to pay for tests. What really makes me mad is I see people on welfare get full medical care.
I'M IN LA. WITH SAME PROBLEM. TOO MANY DRUGS CAN AFFECT THE LIVER. THE UNIVERSITY RUN HOSPITALS CAN USALLY HELP WITH EXPENSE IF YOU DO NOT HAVE INSURANCE.BUT IT IS REALLY HARD TO GET HELP WITH THE GI CLINIC CLOSE TO HOME. I AM END STAGE WITH NOT GOOD EXPECTATIONS BUT HAVE LEARN TO USE STRICT SALT-FREE AND TONS OF WATER TO FLUSH OUT SYSTEM. DOCTORS SEEM TO GIVE YOU A LAX REGEMENT TO FOLLOW. BE VERY STRICT TO YOURSELF BECAUSE IT IS UP TO YOU TO TAKE CHARGE OF THIS. ITS A SHAME THAT WE ARE MORE CONCERNED WITH SAVING ENDANGERED TREE FROGS THAN PEOPLE!! I STILL VOTE!!
I would agree to find a good hepatologist, where are you in Tx. I would think there would be some in Dallas, get all your information in order, pay out of pocket to see the hepatologist and tell her/him that you need to help to get treated and the best way to go about this.
You might also see if there are any hepatitis C support groups anywhere in your area, maybe Houston, Dallas, Austin and see what they can do. Also maybe the local public health department. Let us know how some of these leads work out.
There is a hepatologist in Dallas that another member just went to, didn't sound like they had a long conversation, but she is supposed to be good. Dr. Ghalib
My consult w/ my hepatologist was $95.00 I think.
Good Luck..... this country should be ashamed of not providing health care, but there are other ways in place, go for it...
You might also see if there are any hepatitis C support groups anywhere in your area, maybe Houston, Dallas, Austin and see what they can do. Also maybe the local public health department. Let us know how some of these leads work out.
There is a hepatologist in Dallas that another member just went to, didn't sound like they had a long conversation, but she is supposed to be good. Dr. Ghalib
My consult w/ my hepatologist was $95.00 I think.
Good Luck..... this country should be ashamed of not providing health care, but there are other ways in place, go for it...
Well Said, very well said! Good advice all around. there are so many ways you can get help.
make lists, get your goals together, your questions, Call local teaching hospitals.
best of luck
Deb
make lists, get your goals together, your questions, Call local teaching hospitals.
best of luck
Deb
Suzy: In my opinion I have come to believe that doctors really know so little about the effects of Hep C on their patients...They can't do anything to help you live and I don't want to be an experiment.
----------------------------------
It's unfortunate that you've had such a bad experience with the medical system, but you should know that not only are there good and caring doctors out there, but that advances over the years in Hepatitis C now offer treatments that can "help you live" in In many cases. Sometimes it's just as simple as finding the right doctor, because you seem to have the resources, just understandably wary of spending them for naught.
If in your shoes, the first thing I'd do is collect all my medical records and find a good liver specialist (hepatologist) in your area. Hepatologists can usually be found at your larger, teaching hospitals and are more knowledgeable in all matters Hepatitis C than your average family doctor or gastro.
In terms of diagnostic tests and procedures, you can probably expect them to recommend a battery of blood tests, an ultrasound, and probably a liver biopsy. The purpose of these tests and procedures is to find out the condition of your liver and to help determine whether or not you're a good candidate for treatment either now or in the future.
I would not put this off because given your age and length of exposure, the possiblity exists that you may have significant liver damage that needs to be treated right away. Of course, it may turn out you don't, which also will be very useful in terms of your future options.
Prophesies tend to be self-fufilling, so I'd put aside my previous experiences and start fresh with the right doctor. In that vein, and because most of these doctors have limited time, I'd try and limit my conversation to the matter at hand and not dwell on your grievances with past care. Your goal is to get a proper evaulation which will give you the direction you need in how to proceed forward.
All the best,
-- Jim
----------------------------------
It's unfortunate that you've had such a bad experience with the medical system, but you should know that not only are there good and caring doctors out there, but that advances over the years in Hepatitis C now offer treatments that can "help you live" in In many cases. Sometimes it's just as simple as finding the right doctor, because you seem to have the resources, just understandably wary of spending them for naught.
If in your shoes, the first thing I'd do is collect all my medical records and find a good liver specialist (hepatologist) in your area. Hepatologists can usually be found at your larger, teaching hospitals and are more knowledgeable in all matters Hepatitis C than your average family doctor or gastro.
In terms of diagnostic tests and procedures, you can probably expect them to recommend a battery of blood tests, an ultrasound, and probably a liver biopsy. The purpose of these tests and procedures is to find out the condition of your liver and to help determine whether or not you're a good candidate for treatment either now or in the future.
I would not put this off because given your age and length of exposure, the possiblity exists that you may have significant liver damage that needs to be treated right away. Of course, it may turn out you don't, which also will be very useful in terms of your future options.
Prophesies tend to be self-fufilling, so I'd put aside my previous experiences and start fresh with the right doctor. In that vein, and because most of these doctors have limited time, I'd try and limit my conversation to the matter at hand and not dwell on your grievances with past care. Your goal is to get a proper evaulation which will give you the direction you need in how to proceed forward.
All the best,
-- Jim
If you can find a doctor or a doctor who can refer you to one of the various trials that are out there they will pay for everything for you, 100%. Doctor visits, tests, meds everything.
Otherwise - while I don't know about the doctor part I do know that the drug companies will help you out with their patient assistance programs and give you the medications for free. The cost of the meds is well over 20k alone JUST for the ribavirin and interferon. Unfortunately, you'd still need to pay for the doctor visists and tests and stuff though.
Someone in here must know how to help you find a trial in Texas. That would be a perfect thing for you.
I don't know how but I SURE wish you luck - my heart goes out to you and you are in my prayers.
Otherwise - while I don't know about the doctor part I do know that the drug companies will help you out with their patient assistance programs and give you the medications for free. The cost of the meds is well over 20k alone JUST for the ribavirin and interferon. Unfortunately, you'd still need to pay for the doctor visists and tests and stuff though.
Someone in here must know how to help you find a trial in Texas. That would be a perfect thing for you.
I don't know how but I SURE wish you luck - my heart goes out to you and you are in my prayers.
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