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Hemoglobin/Vitamin C/Open thread
I know I have been asking a lot of questions and do not want to be a thread hog. Buuuuuut I go to see my Hep doctor this Thursday for the first time. I believe I am ready thanks to you guys. The only have a couple more questions. I am a little light on my hemoglobin knowledge. I understand what it is and what it does, but what affects it, the Ribivirin? What is the corrective therapy? Also what are within range levels and experiences with tx difficulties with surrounding it? Secondly, Vitamin C. There doesn
Hi all..stopped by to catch up and was quite pleased to see a lot of familiar handles still participating.
For the most part our doctors follow the same protocol for monitoring blood counts at the initiation and duration of treatment. At the onset our docs have us take frequent blood tests in order to catch those individuals who have a rapid, and potentially lifethreatenin, drop in Hb, HCT, platelets, ect. After a few weeks go by the blood testing is less frequent and for a very good reason. The largest majority of patients on INF/riba treatment have their blood levels stabilize by weeks 6-8. Califia's experience is quite typical of the "average" HCV patient on treatment. My own experience is almost exactly the same; an initial rapid drop (10.6) in hemoglobin stabilizing at week 8 at a level of 11.5. These counts remained at this level for the entire 100 weeks I was on treatment.
I think it might be a bit premature to attribute stabilised blood counts on any herbal protocol. In reading Misha Cohen's website and the literature the strongest statement that is made in relation to improved or stabilising blood counts is the following:
"There is very good success with alleviating side effects and apparently helping to improve bone marrow suppression related to both Pegasys and Peg-Intron pegylated interferon therapies"
The use of the wording "Apparently helping" is not very strong evidence or data in support of a increase in the number of patients who have stabilised blood counts using a herbal protocol over those who do nothing. Admittedly I have not read the single article that she helped write/research on herbal treatment of mild to moderate anemia...but I will this week! What concerns me is that there is no published data on treatment of anemia using this or simiar protocol and that one article only mentions mild to moderate anemia. I hope no one gets their hopes up too high about using this protocol to treat their anemia.....the evidence is a bit thin.
I am also concerned that with claims of using these herbals for a period of decade(s) has resulted in no publications of the efficacy of this type of treatment. There are certainly some components of herbal treatments that help a great many people stablise LFT's but so far in my research I have found little to support the notion of increased blood counts.....if anyone has any references they feel I should look at please post the citations.
regards,
BobK
For the most part our doctors follow the same protocol for monitoring blood counts at the initiation and duration of treatment. At the onset our docs have us take frequent blood tests in order to catch those individuals who have a rapid, and potentially lifethreatenin, drop in Hb, HCT, platelets, ect. After a few weeks go by the blood testing is less frequent and for a very good reason. The largest majority of patients on INF/riba treatment have their blood levels stabilize by weeks 6-8. Califia's experience is quite typical of the "average" HCV patient on treatment. My own experience is almost exactly the same; an initial rapid drop (10.6) in hemoglobin stabilizing at week 8 at a level of 11.5. These counts remained at this level for the entire 100 weeks I was on treatment.
I think it might be a bit premature to attribute stabilised blood counts on any herbal protocol. In reading Misha Cohen's website and the literature the strongest statement that is made in relation to improved or stabilising blood counts is the following:
"There is very good success with alleviating side effects and apparently helping to improve bone marrow suppression related to both Pegasys and Peg-Intron pegylated interferon therapies"
The use of the wording "Apparently helping" is not very strong evidence or data in support of a increase in the number of patients who have stabilised blood counts using a herbal protocol over those who do nothing. Admittedly I have not read the single article that she helped write/research on herbal treatment of mild to moderate anemia...but I will this week! What concerns me is that there is no published data on treatment of anemia using this or simiar protocol and that one article only mentions mild to moderate anemia. I hope no one gets their hopes up too high about using this protocol to treat their anemia.....the evidence is a bit thin.
I am also concerned that with claims of using these herbals for a period of decade(s) has resulted in no publications of the efficacy of this type of treatment. There are certainly some components of herbal treatments that help a great many people stablise LFT's but so far in my research I have found little to support the notion of increased blood counts.....if anyone has any references they feel I should look at please post the citations.
regards,
BobK
ck michael,HI and welcome! I have never posted to you! Please don't give up on this forum...as it will quieten down soon! Seems like it has already! YEAHHHHH!!!!!!!
I took about a 3 day brak, during all the hoopla. It aggrivates me sometimes too! But honestly, you have found the right place for the hep virus!!!!
Most of the time everyone here is very loving, caring, helpful, compassionate and knowledgeable!!!! I didn't find this forum,until I was already way into tx.
I treated for 48wks was an early viral responder and undectable thoughout tx! Then BAM! 4 months post tx I relapsed! I will be starting a clinical trial study, because of the way I reacted thoughout tx and then relapsed..it has the doctor's baffled and I will NOT give up!
I did have a very rough time on tx and was so sure w/ all I had gone thru I would surely "clear", but for some unknown reason something went wrong! I do have a New doctor, a heptologist this time. And even tho I did relapse, the tx did some major damage to the virus. My bx in June showed....stage 1 ...grade 0-1...with no scarring!!!
So once again..I will start a new roller coster ride!!!! I never thought I could do tx again, because I had all sx and sometimes all sx @ the same time!
Please hang with us here. Without this forum I don't know how I would have made it!!!! BTW I am a 49 yr old female..geno 1A. I want to wish you the best while you are on tx, but stay with us. We can help you and you can help us!!!
Also were you ever a disc-jocky on a radio station? I knew a c michael...but then I saw you post at the end... michael in kc. The "radio man" I knew was in Charlotte, NC???? Just wondering? Sending much love @ many prayers your way, Cindee
befuddled!!!! Hey you!!! Thank you so much for remembering Betty in your prayers! She is doing okay. (for those of you who don't know..Betty is my 2nd Mother, who is dying from a rare form of cancer...signet ring adenocarcemona @ it's 100% fatal) She took care of me when I was on tx and cooked many meals for hubby @ me.
Befuddled...hospice is starting to come in once a wk right now, and then more as needed. She has been sitting in her recliner the past few times I have visited her. She loves to crochet and is "working" on her last afghan for one of her great-grand childern. She has 5 great-grands and has made them all an afghan!! She looks and smells like an angel!!!!! She wears Wind Song cologne....something I haven't worn in years. Do you remember their...theme song? "I can't seem to forget you...your WIND SONG stays on my mind"? SOOOO TRUE!!! I am soon going to get me some. It smells so "light @ clean". She is also going to make my grand-daughter an afghan...something to always remember her by...it's a secret...my g.daughter has wanted mine, since she made it for me for my b.day in July!!! My g.daughter will be so happy and so surprised!!!!
I want to Thank you all for keeping Betty in your prayers. I tell her how everyone here is "praying" for her and I give her a kiss on the forehead...from anyone who ever mentions her name! So Vicki, tomorrow when I visit her..I will kiss her forehead, and tell her it's from you. When I do that she always smiles...so BIG!!!!! You are so special to me.....and I love you very much. You remain in my prayers always!!! Hope your family and you are doing good. I know you have a lot on your plate right now....and I'm praying extra prayers for YOU! Love, Cindee
unico..you are a wonderful person. You have the greatest "outlook on life". I love to read your posts...sometimes you "crack me up"!!!! And I believe "laughter" is the best medicine we all need right now!!!!! You are a GOD send to this forum! I am so happy to call you my friend!!!! I hope you are feeling good these days! Much love @ Many prayers, Cindee :)
I took about a 3 day brak, during all the hoopla. It aggrivates me sometimes too! But honestly, you have found the right place for the hep virus!!!!
Most of the time everyone here is very loving, caring, helpful, compassionate and knowledgeable!!!! I didn't find this forum,until I was already way into tx.
I treated for 48wks was an early viral responder and undectable thoughout tx! Then BAM! 4 months post tx I relapsed! I will be starting a clinical trial study, because of the way I reacted thoughout tx and then relapsed..it has the doctor's baffled and I will NOT give up!
I did have a very rough time on tx and was so sure w/ all I had gone thru I would surely "clear", but for some unknown reason something went wrong! I do have a New doctor, a heptologist this time. And even tho I did relapse, the tx did some major damage to the virus. My bx in June showed....stage 1 ...grade 0-1...with no scarring!!!
So once again..I will start a new roller coster ride!!!! I never thought I could do tx again, because I had all sx and sometimes all sx @ the same time!
Please hang with us here. Without this forum I don't know how I would have made it!!!! BTW I am a 49 yr old female..geno 1A. I want to wish you the best while you are on tx, but stay with us. We can help you and you can help us!!!
Also were you ever a disc-jocky on a radio station? I knew a c michael...but then I saw you post at the end... michael in kc. The "radio man" I knew was in Charlotte, NC???? Just wondering? Sending much love @ many prayers your way, Cindee
befuddled!!!! Hey you!!! Thank you so much for remembering Betty in your prayers! She is doing okay. (for those of you who don't know..Betty is my 2nd Mother, who is dying from a rare form of cancer...signet ring adenocarcemona @ it's 100% fatal) She took care of me when I was on tx and cooked many meals for hubby @ me.
Befuddled...hospice is starting to come in once a wk right now, and then more as needed. She has been sitting in her recliner the past few times I have visited her. She loves to crochet and is "working" on her last afghan for one of her great-grand childern. She has 5 great-grands and has made them all an afghan!! She looks and smells like an angel!!!!! She wears Wind Song cologne....something I haven't worn in years. Do you remember their...theme song? "I can't seem to forget you...your WIND SONG stays on my mind"? SOOOO TRUE!!! I am soon going to get me some. It smells so "light @ clean". She is also going to make my grand-daughter an afghan...something to always remember her by...it's a secret...my g.daughter has wanted mine, since she made it for me for my b.day in July!!! My g.daughter will be so happy and so surprised!!!!
I want to Thank you all for keeping Betty in your prayers. I tell her how everyone here is "praying" for her and I give her a kiss on the forehead...from anyone who ever mentions her name! So Vicki, tomorrow when I visit her..I will kiss her forehead, and tell her it's from you. When I do that she always smiles...so BIG!!!!! You are so special to me.....and I love you very much. You remain in my prayers always!!! Hope your family and you are doing good. I know you have a lot on your plate right now....and I'm praying extra prayers for YOU! Love, Cindee
unico..you are a wonderful person. You have the greatest "outlook on life". I love to read your posts...sometimes you "crack me up"!!!! And I believe "laughter" is the best medicine we all need right now!!!!! You are a GOD send to this forum! I am so happy to call you my friend!!!! I hope you are feeling good these days! Much love @ Many prayers, Cindee :)
hmmmm.. your description of yourself and philosophy on people, sounds like you are describing me.. I have been told more than oncee, that I am too nice, too trusting.. oh well.... Maybe we were twins in another life????? stranger things have happened.. LOL..
Do I remember right? are you in FL? I was born in StPete..
Saw this on sign on a pickup truck/camper of a guy who just roams around.works as he travels.....I LOVE IT!!
"Be what you be, don't be what you ain't, coz if you be what you ain't, then you ain't what you IS...Be what you BE!!!" :)
Do I remember right? are you in FL? I was born in StPete..
Saw this on sign on a pickup truck/camper of a guy who just roams around.works as he travels.....I LOVE IT!!
"Be what you be, don't be what you ain't, coz if you be what you ain't, then you ain't what you IS...Be what you BE!!!" :)
I noticed also first couple of months being out of breath. Climbing stairs was a real challenge LOL And also my hemoglobin at that time was about 10.4 and now at 30 weeks still running the same but I don't have shortness of breath as in beginning. The only time I ever noticed a drastic change is like I said when dropped to 9! I was so light headed! I think Cuteus had said at time if dr didn't give me procrit soon,,,I would be needing a blood transfusion LOL Anyways,,,I guess it seems to usually take care of itself and onward we go!! No backing out now right?
That site is pretty informing huh?? Has basically every view and approach towards hep c all in one place..I learned alot from it, and I'm still reading, as there is just so damn much!!!
Ameribrit, yeah I'm going to get back into this, can't let you guys have all the fun without me..I have been taking the Effexor's, and they are working, I guess. They haven't made me as tired as Celexa, and no neck pain or anything.That is what the Dr wanted me to wait on.To make sure she could find a AD that worked for me, and it also helps anxiety..Stomach has been alot better, as I have been eating alot of yogurt, and a cultured drink by Dannon.. Haven't had reflux problems in weeks, only alittle when I wake up..
I am alot more aware of the effects of the drugs this time, and hopefully more at ease of what I'm getting myself into.The initial shock should not be as overwhelming, I'm hoping..Thanks for asking, as I make my appointment monday morning for bloodwork, then it should all come into play after that..Taking pegysus or nothing..It is my decision, and if I feel more comfortable with MY decision, Dr should respect that..
As far as RBC counts, and anemia..For some it is inevitable, but for others they stay above the exectable limits throughout tx..I have read some studies that show this is directly effected by condition of blood labs before tx, and patients diet BEFORE and during tx..Foods do have an effect on your CBC, and eating lots of greens and red meat, bring RBC's up..For some, again eating right may not counter act the drop and drug interaction may be the only option..Only trial and error, can determine that..
Most take vitamins with no iron, and if not getting enough natural iron from the intake of iron rich foods, then this would definately contribute to lowering RBC's..The body neeeds Iron to produce RBC's..
Ameribrit, yeah I'm going to get back into this, can't let you guys have all the fun without me..I have been taking the Effexor's, and they are working, I guess. They haven't made me as tired as Celexa, and no neck pain or anything.That is what the Dr wanted me to wait on.To make sure she could find a AD that worked for me, and it also helps anxiety..Stomach has been alot better, as I have been eating alot of yogurt, and a cultured drink by Dannon.. Haven't had reflux problems in weeks, only alittle when I wake up..
I am alot more aware of the effects of the drugs this time, and hopefully more at ease of what I'm getting myself into.The initial shock should not be as overwhelming, I'm hoping..Thanks for asking, as I make my appointment monday morning for bloodwork, then it should all come into play after that..Taking pegysus or nothing..It is my decision, and if I feel more comfortable with MY decision, Dr should respect that..
As far as RBC counts, and anemia..For some it is inevitable, but for others they stay above the exectable limits throughout tx..I have read some studies that show this is directly effected by condition of blood labs before tx, and patients diet BEFORE and during tx..Foods do have an effect on your CBC, and eating lots of greens and red meat, bring RBC's up..For some, again eating right may not counter act the drop and drug interaction may be the only option..Only trial and error, can determine that..
Most take vitamins with no iron, and if not getting enough natural iron from the intake of iron rich foods, then this would definately contribute to lowering RBC's..The body neeeds Iron to produce RBC's..
Hi would you mind sharing your herbal regimen with me? My doc says he doesn't want me to do any herbs, not even milk thistle while on Tx.. but, it is up to me.. so i am interessted in the experience of others who also are interested in natural remedies, an what they use and how it's working for them.. Thanx!!.. if you'd like to email me instead of replying here.. that's fine.. ***@****
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