Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Hey Debra-hang in there. They are coming out with new treatments as early as this fall, so don't worry. I know you said that you did real bad on the Interferon, didn't you. I don't remember the particulars, though-brain fog real bad. Bob SimonsSr. CommanderRoyal RangersTucson, Az.bsimons@...http://abbacomputers.homepage.com/bob.htmFor I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jer 29:11 (NIV) Wow is this possible I ffel really sad and am not sure what to make of this. After my interferon fiasco I had the dr retest the PCR numbers and my liver function. My liver function was 43 so that was stable from April or so. Then they called me today (remember we are military and they don't call unless it is bad) and told me that number had went from 100,000 to 1.000,000. That is from probably about July of last year. I told them there must have been a mistake with the extra 0. She recalled the lab and said no it wa not a mistake. Then I had her go back to my other numbers of 144,000, 112,000, and 100,000 to make sure those had 5 zeros not 6. She said there was not a mistake. How could this have gone up so much? I know I have not been feeling as well. The two most noticeable things are the exhaustion and the can't get as many tasks done/and or remembing things that I always have done. I left work and just bawled. I feel really overwhelmed. Debra angel in ALsaka Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Angel, Unfortunately it is not uncommon for viral load to increase to higher than baseline after unsuccessful interferon therapy. It is one of the major problems with Interferon. If you don't kill all these little bugs on your first assault they tend to fight back with a vengeance. Do not be discouraged, there are ways to reduce your viral load herbally and through life style changes. Also, viral load seems to have no real correlation to the course of the disease or outcome, though a lower viral load is indicative of an increased likelihood of successful therapy, though that is not an issue for you now I gather anyway. finally, 1,000,000 is still not a bad number, my guess is you will probably do better with the peg interferon. Syd >From: " angeldh " <angeldh@...> >Reply-Hepatitis Cegroups ><Hepatitis Cegroups> >Subject: Wow is this possible >Date: Mon, 19 Jun 2000 22:07:12 -0800 > >I ffel really sad and am not sure what to make of this. After my >interferon fiasco I had the dr retest the PCR numbers and my liver >function. My liver function was 43 so that was stable from April or so. >Then they called me today (remember we are military and they don't call >unless it is bad) and told me that number had went from 100,000 to >1.000,000. That is from probably about July of last year. I told them >there must have been a mistake with the extra 0. She recalled the lab and >said no it wa not a mistake. Then I had her go back to my other numbers of >144,000, 112,000, and 100,000 to make sure those had 5 zeros not 6. She >said there was not a mistake. How could this have gone up so much? I know >I have not been feeling as well. The two most noticeable things are the >exhaustion and the can't get as many tasks done/and or remembing things >that I always have done. I left work and just bawled. >I feel really overwhelmed. >Debra angel in ALsaka ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Debra.... Someone else will have to answer the tech part of that (and I am sure they will!!!!) I just wanted you to know how much I care and send you some HUGS..... crying is OK.... being sad is OK... we're all here for you.... Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Debra, IFN might not be for you, join the crowd. Hang in there though, there are a number of promising treatments just right around the corner now. You might try some of the things that seem to work besides IFN. You need to harass the HCV and keep it down until a better treatment option comes along. I would start with milk thistle, add anti oxidants like selenium, C, E, ALA, etc, then go on to develop an herbal regimen that seems to make you feel better. Schizandra and dandelion should be on your list although dandelion is a diuretic so watch out. I stopped using dandelion becasue of that but still there are many good herbs. Start choking down raw garlic, chopped on everything you eat, include lots of vinegar in your diet, eliminate the foods that help HCV like suger, and in short, time for you to fight. Put those gloves on kid, and join the fray. Syd >From: " angeldh " <angeldh@...> >Reply-Hepatitis Cegroups ><Hepatitis Cegroups> >Subject: Re: Wow is this possible >Date: Tue, 20 Jun 2000 11:00:04 -0800 > >but would you think after only 2 shots? I don't know if I can do the other >interferon either because of the particular reaction I had. It mad my very >mild asthma get completely out of control till I was on 9 meds to control >that. >Debra > Wow is this possible > > >Date: Mon, 19 Jun 2000 22:07:12 -0800 > > > > > >I ffel really sad and am not sure what to make of this. After my > > >interferon fiasco I had the dr retest the PCR numbers and my liver > > >function. My liver function was 43 so that was stable from April or >so. > > >Then they called me today (remember we are military and they don't call > > >unless it is bad) and told me that number had went from 100,000 to > > >1.000,000. That is from probably about July of last year. I told them > > >there must have been a mistake with the extra 0. She recalled the lab >and > > >said no it wa not a mistake. Then I had her go back to my other >numbers >of > > >144,000, 112,000, and 100,000 to make sure those had 5 zeros not 6. >She > > >said there was not a mistake. How could this have gone up so much? I >know > > >I have not been feeling as well. The two most noticeable things are >the > > >exhaustion and the can't get as many tasks done/and or remembing things > > >that I always have done. I left work and just bawled. > > >I feel really overwhelmed. > > >Debra angel in ALsaka > > > > ________________________________________________________________________ > > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > > > > ------------------------------------------------------------------------ > > Remember four years of good friends, bad clothes, explosive chemistry > > experiments. > > 1/5532/10/_/96144/_/961519439/ > > ------------------------------------------------------------------------ > > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Angel: I think Syd's right about 1 million not being as bad as it could be. To put things into perspective, my husband's is often over 2 million. I have to defer to someone else on the technical aspects too, Merrill. But how he feels doesn't always coincide with the numbers either. I don't understand. Tree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 >Do not be discouraged, there are ways to reduce your viral load herbally and >through life style changes. Also, viral load seems to have no real >correlation to the course of the disease or outcome >finally, 1,000,000 is still not a bad number > >Syd > What Syd said. I know 1,000,000 sounds horrible, but if your lft's are stable it probably is just a reaction to the jolt of interferon you had. When I was scanning around for some sort of benchmark for viral load before my husband's numbers came back, I was reading at Hepatitis neighborhood of people with viral loads of 7, 8 or 9,000,000 without cirrhosis or other extreme symptoms. Like everything else with this * & ^% disease, it depends on the person and you can't assume anything based on the numbers -- big or small. Hang in there -- we're here to listen and include you in our prayers. Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 but would you think after only 2 shots? I don't know if I can do the other interferon either because of the particular reaction I had. It mad my very mild asthma get completely out of control till I was on 9 meds to control that. Debra Wow is this possible > >Date: Mon, 19 Jun 2000 22:07:12 -0800 > > > >I ffel really sad and am not sure what to make of this. After my > >interferon fiasco I had the dr retest the PCR numbers and my liver > >function. My liver function was 43 so that was stable from April or so. > >Then they called me today (remember we are military and they don't call > >unless it is bad) and told me that number had went from 100,000 to > >1.000,000. That is from probably about July of last year. I told them > >there must have been a mistake with the extra 0. She recalled the lab and > >said no it wa not a mistake. Then I had her go back to my other numbers of > >144,000, 112,000, and 100,000 to make sure those had 5 zeros not 6. She > >said there was not a mistake. How could this have gone up so much? I know > >I have not been feeling as well. The two most noticeable things are the > >exhaustion and the can't get as many tasks done/and or remembing things > >that I always have done. I left work and just bawled. > >I feel really overwhelmed. > >Debra angel in ALsaka > > ________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com > > > ------------------------------------------------------------------------ > Remember four years of good friends, bad clothes, explosive chemistry > experiments. > 1/5532/10/_/96144/_/961519439/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Debra, Most herbs are available on line or at your local health foods store. Amounts are usually given milligrams (mg), though some are in micrograms (mc) That confusion your experiencing is what we call brain fog. Mechanism in unknown, there is some speculation HCV does involve the brain, and this also is given as a possible reason for fatigue. It is clear that the fog, also called encephalopathy, is reversable with a successful IFN treatment program. Best get that together now. Bottom line-you are experiencing symptoms now so you are all out of wiggle room. Time to fight. You can do much to improve the way you feel and the outcome of this illness through diet and herbs. The time is now. Syd >From: " angeldh " <angeldh@...> >Reply-Hepatitis Cegroups ><Hepatitis Cegroups> >Subject: Re: Wow is this possible >Date: Tue, 20 Jun 2000 19:40:48 -0800 > >THanks for the advice. I don't know where to look for the amounts of these >different herbals. I am noticing a differnce in the last few months >thoughl >The tiredness has increased tremendously and I am forgetting common stuff I >am just so used to doing. Usually I can talk or listen on the phone and >talk to husband at the same time. No more. tonight the tc was on while we >were eating dinner and the two noises together about sent me through the >ceiling. >Debra > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 Tree..... The only one I had is 666,000. I really think at this point, my problems are the mito, not so much hepC. BTW, everything I see in the lit says the number does not matter..... How is Bob doing with the back??? How was the shower (first one)??? Thinking of you, Merril Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2000 Report Share Posted June 20, 2000 THanks for the advice. I don't know where to look for the amounts of these different herbals. I am noticing a differnce in the last few months thoughl The tiredness has increased tremendously and I am forgetting common stuff I am just so used to doing. Usually I can talk or listen on the phone and talk to husband at the same time. No more. tonight the tc was on while we were eating dinner and the two noises together about sent me through the ceiling. Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 At 04:36 PM 6/20/2000 -0700, you wrote: >Schizandra and dandelion should be on your list although >dandelion is a diuretic so watch out. I stopped using dandelion becasue of >that but still there are many good herbs. >Syd > The leaves are diuretic, the roots are what you want for benefits to your liver. (I'm writing an article about herbal therapies for a hospital magazine, and the herbalist corrected me on this less than 24 hours ago, so I get to sound like I know :-) ) Belinda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Jeannie What did you mean when you said that your husband's condition deteriorated while on Interferon? Are you saying that Interferon made his condition worse? My husband did Rebetron and many times we said he was better off before the treatment (which did not work of course) than he is now. Please explain. Thanks. Ruth >>> quinlyn1@... 06/20/00 09:08PM >>> Debra, You sound pretty scared and I can't say as I blame you. For one thing, it sure doesn't help when you get these kind of test results and they aren't explained to you. Pat's doctors have repeatedly told us that the viral load number is really quite inconsequential in the progression of the disease. They don't even tell us what it is, though I may push it the next time just to know. He has been at stage 4 cirrhosis for close to 3 years, give or take a month or two. (He's not the only one whose memory isn't always the best.) He dropped from barely any sign of it to stage 4 very rapidly then stabilized. Don't get me wrong, he's not a well man, but he hasn't steadily deteriorated at the rate that he did when he was on the interferon. Like Merril said, it's OK for you to cry. You can even scream, rant and rave and feel sorry for yourself for a while, and we will listen and do our best to help in any way we can. Just don't let this drag you down too far. Your mental health is just as important as your physical health, and one has a direct effect on the other. (Believe me, I know!) I hope I don't sound preachy; that sure is not my intent. I just don't want you to get so scared and depressed that you fall into a deep pit that is sooo hard to get out of. You've gotten some great advice from several people; things that might even make you feel a little better. Please know that we all care! Hugs and God Bless, Jeanie --- angeldh <angeldh@...> wrote: > I ffel really sad and am not sure what to make of > this. After my interferon fiasco I had the dr > retest the PCR numbers and my liver function. My > liver function was 43 so that was stable from April > or so. Then they called me today (remember we are > military and they don't call unless it is bad) and > told me that number had went from 100,000 to > 1.000,000. That is from probably about July of last > year. I told them there must have been a mistake > with the extra 0. She recalled the lab and said no > it wa not a mistake. Then I had her go back to my > other numbers of 144,000, 112,000, and 100,000 to > make sure those had 5 zeros not 6. She said there > was not a mistake. How could this have gone up so > much? I know I have not been feeling as well. The > two most noticeable things are the exhaustion and > the can't get as many tasks done/and or remembing > things that I always have done. I left work and > just bawled. > I feel really overwhelmed. > Debra angel in ALsaka > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2000 Report Share Posted June 21, 2000 Oh hi, Merrill. He's doing very well. The first shower was uneventful (ha ha). He has to wear the back brace for 3 to 4 months. I think he's decided to pursue treatment for the Hep C as soon as he gets through this back business. Tree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2000 Report Share Posted June 22, 2000 Ruth, Yes, Pat got much worse while on the interferon, and even worse yet on the combo. The cirhossis got much worse and all of his labs continuously deteriorated. When his red count dropped to below 6 and he was showing no signs of responding to the treatments his doctors finally decided to take him off of it. I guess the drugs just aren't for everybody. Sorry to hear that your hubby isn't responding either. It's so hard to watch them go through all of the side effects for absolutely no gain. Jeanie --- Ruth White <rwhite@...> wrote: > Jeannie > What did you mean when you said that your husband's > condition deteriorated while on Interferon? Are you > saying that Interferon made his condition worse? My > husband did Rebetron and many times we said he was > better off before the treatment (which did not work > of course) than he is now. Please explain. Thanks. > Ruth __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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