Aa
Two years off treatment and still suffering!
My therapist suggested I start looking for answers on the internet again...
I have been cured and off all meds for two years but still suffering and do not know where to turn.
I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!
At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.
Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.
I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.
frank
At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
I have been cured and off all meds for two years but still suffering and do not know where to turn.
I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!
At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.
Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.
I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.
frank
At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
I thought you said you were already cured, or SVR? Why does your doc state that you have HCV?
DD
DD
Just to be safe, have him add a viral load test (PCR). I'm glad he's doing testosterone and some other stuff. Good luck.
-- Jim
-- Jim
Please dont tell me I might need a new doc as this is my only and best choice. I will stick with him for a couple more months and see how it goes. Yeah, I thought it was kinda strange to run this test as WE should know I have Hep C. I am guessing by conversations with him that he wants to cross every T and dot every I...
Here is the next list of tests he has for me...
Chief Complaint: Estrogen H, adrenopathy, Hep C: CT Scan with contrast of Chest, Abdomen: Liver lymph nodes. Pelvis: lymph nodes.
Diagnosis: Hep C, Cryoglobaliumis, hyperestrogene: Blood Tests: cryoglobaliumis, Hepatitis C viral titter, SPEP immune protein electrophoresis by electrofuatis.
Most of the tests are written in docs handwriting and this is what I can make out, Sorry.
I am pretty sure that he ran a bunch of hormonal etc but not sure. Here is a copy from my post above of last run blood work: Comp. Metabolic Panel, Lipid Panel, Cortisol AM & PM, Estrogen, FSH, Prolactin, Testosterone, T4, TSH, Urinalysis, CBC Automated Differential, Sedimentation Rate, ANA, CRP Inflammatory, Hepatitis ABC, Hep. C Antibody, HIV Antibody, RA.
What should be on the list for next time?
Thanks for the help but please understand that for the most part I have very few choices in docs around here and the few people that I trust in the medical field say this new doc is really excellent. All others just seem to be shills for the pharmaceuticals.
I really do appreciate your suggestions.
frank
Here is the next list of tests he has for me...
Chief Complaint: Estrogen H, adrenopathy, Hep C: CT Scan with contrast of Chest, Abdomen: Liver lymph nodes. Pelvis: lymph nodes.
Diagnosis: Hep C, Cryoglobaliumis, hyperestrogene: Blood Tests: cryoglobaliumis, Hepatitis C viral titter, SPEP immune protein electrophoresis by electrofuatis.
Most of the tests are written in docs handwriting and this is what I can make out, Sorry.
I am pretty sure that he ran a bunch of hormonal etc but not sure. Here is a copy from my post above of last run blood work: Comp. Metabolic Panel, Lipid Panel, Cortisol AM & PM, Estrogen, FSH, Prolactin, Testosterone, T4, TSH, Urinalysis, CBC Automated Differential, Sedimentation Rate, ANA, CRP Inflammatory, Hepatitis ABC, Hep. C Antibody, HIV Antibody, RA.
What should be on the list for next time?
Thanks for the help but please understand that for the most part I have very few choices in docs around here and the few people that I trust in the medical field say this new doc is really excellent. All others just seem to be shills for the pharmaceuticals.
I really do appreciate your suggestions.
frank
Unless you're misinterpreting what your doctor did, I agree with DoubleDose.
At this point, you want a viral load test (commonly called a PCR or TMA test) to determine if you have hepatitis c or not. The test you mentioned (the antibody test) doesn't tell you anything other then the fact that you may or may not have been exposed to the virus in the past.
Is your doctor a liver specialist (hepatologist)? Sounds to me like he's not and its not uncommon that non-specialists get these tests confused.
Meanwhile -- until you see a liver specialist -- you might ask one of your doctors to run a viral load test. The one I would recommend in your case is from Quest Laboratories and called "HCV RNA QUALITATIVE TMA". Have your doctor write those exact words on a prescription form -- along with a diagnosis code -- and you can then bring that form to any Quest location to have your blood drawn. Alternatively, if your doctor has an account with Quest, they can draw blood at his office. If for some reason your insurance doesn't cover Quest, then ask the doctor for a "PCR" viral load test. You can find a local Quest Center here: http://www.questdiagnostics.com/
Good luck!
-- Jim
At this point, you want a viral load test (commonly called a PCR or TMA test) to determine if you have hepatitis c or not. The test you mentioned (the antibody test) doesn't tell you anything other then the fact that you may or may not have been exposed to the virus in the past.
Is your doctor a liver specialist (hepatologist)? Sounds to me like he's not and its not uncommon that non-specialists get these tests confused.
Meanwhile -- until you see a liver specialist -- you might ask one of your doctors to run a viral load test. The one I would recommend in your case is from Quest Laboratories and called "HCV RNA QUALITATIVE TMA". Have your doctor write those exact words on a prescription form -- along with a diagnosis code -- and you can then bring that form to any Quest location to have your blood drawn. Alternatively, if your doctor has an account with Quest, they can draw blood at his office. If for some reason your insurance doesn't cover Quest, then ask the doctor for a "PCR" viral load test. You can find a local Quest Center here: http://www.questdiagnostics.com/
Good luck!
-- Jim
Why the heck did your doc run an antibody test for HCV??? What on earth would that tell anyone. If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Maybe you need a new doctor.
DD
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Maybe you need a new doctor.
DD
Why the heck did your doc run an antibody test for HCV??? What on earth would that tell anyone. If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Maybe you need a new doctor.
DD
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Maybe you need a new doctor.
DD
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