Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hello everyone! I've been reading all the letters about the frustrations and problems etc. and thought I'd share mine just for general information. I agree that there isn't a " cut & dry " procedure that the Doctors, pharmacists and suppliers follow. I was all geared up to start the peg-intron treatment and also got the run-around of calling for an access number only to be told that there was a 3 month wait, As it turned out, I got the number and Rx within 2 weeks. My Dr. says the manufacturers were pushing to increase production so for those of you still waiting...hang in there!. Some of my experiences once I started...Make sure you " map " out your injection sites and keep a " log " of them. Especially if you you have to start another series of injections of " Procrit " along with the peg-intron. Be sure to call in your refill far in advance because it has taken me up to 7 days to get them re-filled. Be absolutely meticulous when injecting. I work as a volunteer in a local hospital ER so I am forever following sanitary procedures even at home but yet I still managed to get an infection in one of my injection sites. I experience all the regular side effects like, itching, severe insomnia, hair loss, nausea...Just let your Dr. know immediately so that he can treat what he can so that you are not in any more discomfort than you need to be...I never did sign up for that " being in charge " program but from what I've read, it doesn't sound too bad. As I told Terri, another big hassle is traveling with your medications...I travel a lot and also into foreign countries so it might help to have a formal letter from your Dr. listing your prescribed treatments and keep everything in their original boxes etc. including the supplies like alcohol wipes and syringes. It really saves a lot of hassle when going through customs. Like I said earlier, this is just for general info for anyone who cares..I am sure everyone else has something to share..Just hang in there and never give up hope no matter how bad things seem to be. My thoughts and prayers to all! Sincerely, Art in Seattle __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Art, thanks for the information, I have printed it off to go back to when my number comes up on the list. The nurse at Be In Charge told me, too, that if you drink a large glass of water right before you give yourself the injection, and another one right after, that the side effects are less severe. Have you done this? I have so much to learn, and to get prepared for. Prayers for you, too, Art! Marilyn RE:General Info Hello everyone! I've been reading all the lettersabout the frustrations and problems etc. and thoughtI'd share mine just for general information. I agreethat there isn't a "cut & dry" procedure that theDoctors, pharmacists and suppliers follow. I was allgeared up to start the peg-intron treatment and alsogot the run-around of calling for an access numberonly to be told that there was a 3 month wait, As itturned out, I got the number and Rx within 2 weeks. MyDr. says the manufacturers were pushing to increaseproduction so for those of you still waiting...hang inthere!. Some of my experiences once I started...Makesure you "map" out your injection sites and keep a"log" of them. Especially if you you have to startanother series of injections of "Procrit" along withthe peg-intron. Be sure to call in your refill far inadvance because it has taken me up to 7 days to getthem re-filled. Be absolutely meticulous wheninjecting. I work as a volunteer in a local hospitalER so I am forever following sanitary procedures evenat home but yet I still managed to get an infection inone of my injection sites. I experience all theregular side effects like, itching, severe insomnia,hair loss, nausea...Just let your Dr. know immediatelyso that he can treat what he can so that you are notin any more discomfort than you need to be...I neverdid sign up for that "being in charge" program butfrom what I've read, it doesn't sound too bad. As Itold Terri, another big hassle is traveling with yourmedications...I travel a lot and also into foreigncountries so it might help to have a formal letterfrom your Dr. listing your prescribed treatments andkeep everything in their original boxes etc. includingthe supplies like alcohol wipes and syringes. Itreally saves a lot of hassle when going throughcustoms. Like I said earlier, this is just for general info foranyone who cares..I am sure everyone else hassomething to share..Just hang in there and never giveup hope no matter how bad things seem to be.My thoughts and prayers to all!Sincerely,Art in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hi Marilyn! I drink gallons of water every day! It really does help. If I think of anything else that may be usefull, I'll pass it along. Not that I am an expert by any means , but I found out that information you get from support sites such as this one, seems to be more helpful than the professional gibberish fronm the Dr.s office. It really helps to have understanding nurses too. Take Care! Art __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hi Art! Thanks for any input you can give. I think you are absolutely right, the support sites are the best because we get information from people actually going through all of this, rather than people telling us what the textbooks say. I've learned so much in the past 2 - 3 weeks, and I hope in time, I'll be able to share with others and help them, too. Best to you, Marilyn Re: RE:General Info Hi Marilyn! I drink gallons of water every day! Itreally does help. If I think of anything else that maybe usefull, I'll pass it along. Not that I am anexpert by any means , but I found out that informationyou get from support sites such as this one, seems tobe more helpful than the professional gibberish fronmthe Dr.s office. It really helps to have understandingnurses too.Take Care!Art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Hi Marilyn, I was told that you are supposed to drink 1 gallon of water everyday in order for the sides to be bearable. There is another site you should check out www.medhelp.org fantastic people and even a GI PA there to answer questions. She does this on her own time and we are all grateful to her for being there for us. She does not have to. Huggs Pamela Davey -- Re: RE:General Info Art, thanks for the information, I have printed it off to go back to when my number comes up on the list. The nurse at Be In Charge told me, too, that if you drink a large glass of water right before you give yourself the injection, and another one right after, that the side effects are less severe. Have you done this? I have so much to learn, and to get prepared for. Prayers for you, too, Art! Marilyn RE:General Info Hello everyone! I've been reading all the lettersabout the frustrations and problems etc. and thoughtI'd share mine just for general information. I agreethat there isn't a "cut & dry" procedure that theDoctors, pharmacists and suppliers follow. I was allgeared up to start the peg-intron treatment and alsogot the run-around of calling for an access numberonly to be told that there was a 3 month wait, As itturned out, I got the number and Rx within 2 weeks. MyDr. says the manufacturers were pushing to increaseproduction so for those of you still waiting...hang inthere!. Some of my experiences once I started...Makesure you "map" out your injection sites and keep a"log" of them. Especially if you you have to startanother series of injections of "Procrit" along withthe peg-intron. Be sure to call in your refill far inadvance because it has taken me up to 7 days to getthem re-filled. Be absolutely meticulous wheninjecting. I work as a volunteer in a local hospitalER so I am forever following sanitary procedures evenat home but yet I still managed to get an infection inone of my injection sites. I experience all theregular side effects like, itching, severe insomnia,hair loss, nausea...Just let your Dr. know immediatelyso that he can treat what he can so that you are notin any more discomfort than you need to be...I neverdid sign up for that "being in charge" program butfrom what I've read, it doesn't sound too bad. As Itold Terri, another big hassle is traveling with yourmedications...I travel a lot and also into foreigncountries so it might help to have a formal letterfrom your Dr. listing your prescribed treatments andkeep everything in their original boxes etc. includingthe supplies like alcohol wipes and syringes. Itreally saves a lot of hassle when going throughcustoms. Like I said earlier, this is just for general info foranyone who cares..I am sure everyone else hassomething to share..Just hang in there and never giveup hope no matter how bad things seem to be.My thoughts and prayers to all!Sincerely,Art in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Hello again. Well I took my blood work on June 5th and the CD4 count was low at 220. I was doing 24 hour SRG1 electrification on my ankle. ( day and Night) went through batteries like crazy.. Did the 9 Volt sponge front and back of the gut took Oleander also an ozonated water morning and night. 19 days later I went to the Any Lab test place paid $ 600.00 for the absolute CD4 test and the numbers came back as 205. The CD4 dropped even more in that short period. i went to the Dr and will be starting medications to stop HIV from beeing able to lock into the CD4 cells I start on July 14th. By the way when you use the sponges Please BOIL them first to rid them of any bacteria. I had no Herkhizmer effect at all just moving the sponges from front to back for 5 mintutes at a time for a total of 20 minutes each night. I have foregong doing it after June 25th and have not started back Zilling. I was very discouraged. thanks, Jay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Thanks for the report. I am also disappointed this didn't do more for you, seemed unable to stop the slide. I assume the Thymus gland was not exposed to electricity? It was a late addition, an afterthought of mine. One person got no herx on gut, then tried thymus and got severe herx. Not sure it will be same for you, but easy to do it, use same battery just add wires for more sponges on thymus. I hope you have better luck in future. I will file this report, and begin thinking.. bG > > Hello again. Well I took my blood work on June 5th and the CD4 count was low at 220. I was doing 24 hour SRG1 electrification on my ankle. ( day and Night) went through batteries like crazy.. Did the 9 Volt sponge front and back of the gut took Oleander also an ozonated water morning and night. 19 days later I went to the Any Lab test place paid $ 600.00 for the absolute CD4 test and the numbers came back as 205. The CD4 dropped even more in that short period. i went to the Dr and will be starting medications to stop HIV from beeing able to lock into the CD4 cells I start on July 14th. By the way when you use the sponges Please BOIL them first to rid them of any bacteria. I had no Herkhizmer effect at all just moving the sponges from front to back for 5 mintutes at a time for a total of 20 minutes each night. I have foregong doing it after June 25th and have not started back Zilling. I was very discouraged. thanks, Jay > Quote Link to comment Share on other sites More sharing options...
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