Guest guest Posted May 22, 1999 Report Share Posted May 22, 1999 In a message dated 5/22/99 10:44:54 AM Eastern Daylight Time, MHOLMES@... writes: << He said he had received my letter, so I thought it a bit strange that he asked me what he could do for me. >> Mark, Of course, typical typical. He didn't read your letter. They almost never do. I just don't know where they come off being so arrogant. Your letter to him was a total waste of your time. Just like the Protocol I sent on ahead to my Rheumy. She said she never looked at it because she had heard it all before. Ya I'll bet. I am going to a new Dr. next week and if he doesn't do the protocol I will not continue with him either. I am brushing up on it myself. I also want to do the Zithro or preferably the Clindamycin IV or orally. I understand it is very expensive too, but not like Enbrel. I have no Rx insurance. My present Rheumy said she would try to get the Insurance to cover Enbrel if I would go back to Mtx. I said no way, so she just shrugged me off. She says you have to do it together. She would be laughing up her sleeve right now if she knew how bad I was. And I am. Hope you have good luck with the Zithromax. Anita, RA 26 years, Fibro, AP 16 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 I have had this happen when the fluid from my knee moved south to my feet. I think the best thing to do is to elevate your feet above your head whenever possible. When sleeping is a good time. If it is fluid it should eventually be absorbed by your body and discarded. rheumatic advice needed > Hello group, > Good news...my knee is starting to behave a little better, but the bad > news is it has moved into my ankles!!I look like I have two baseballs > sitting on the outsides of them and golfballs on the insides. This is the > first time I have ever had so much swelling and pain! It is almost > impossible to walk. > Does anyone have any hints on how to help this condition? My internist > prescribed compression hose. Has anyone tried these before? All advice is > mucho appreciated! > leslie > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 Hi , I have not posted in awhile. Been terribly busy with other family matters and illnesses, but I know what you are going thru. When we went on vacation this summer, my ankles did the same thing, did not matter if I was on them a lot or alittle or not at all. I elevated them all the time that was possible to do so. I even took the cushions off the couch and stacked them on the bed atnight and put my feet up on them. This lasted for about 3-4 weeks. I can say at this point that has not come back. I had a period of time after that where my knees did the same thing. Right now it is my thumbs and part of my wrists, that are swelled and feel like the skin will burst if I bend them. No danger, because I can't bend them due to the swelling. However today I think it is down a little from what it has been. Good luck, and hang in there. Skippy Original Message ----- From: M Carroll <LCARROLL@...> <rheumaticonelist> Sent: Friday, January 07, 2000 8:48 PM Subject: rheumatic advice needed > Hello group, > Good news...my knee is starting to behave a little better, but the bad > news is it has moved into my ankles!!I look like I have two baseballs > sitting on the outsides of them and golfballs on the insides. This is the > first time I have ever had so much swelling and pain! It is almost > impossible to walk. > Does anyone have any hints on how to help this condition? My internist > prescribed compression hose. Has anyone tried these before? All advice is > mucho appreciated! > leslie > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2000 Report Share Posted January 7, 2000 , Glad the knee is better. I know it was really bothering you. I have never had a lot of serious swelling so I can't offer much advice. I did notice a big difference in the stiffness tho when I went back on my anti inflammatories. If you do take them, maybe a new one would be worth trying. I hope someone gives you some answers. Take care. Bev rheumatic advice needed > Hello group, > Good news...my knee is starting to behave a little better, but the bad > news is it has moved into my ankles!!I look like I have two baseballs > sitting on the outsides of them and golfballs on the insides. This is the > first time I have ever had so much swelling and pain! It is almost > impossible to walk. > Does anyone have any hints on how to help this condition? My internist > prescribed compression hose. Has anyone tried these before? All advice is > mucho appreciated! > leslie > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2000 Report Share Posted January 8, 2000 Manual lymphatic drainage by a registered therapist helps me. rheumatic advice needed >Hello group, > Good news...my knee is starting to behave a little better, but the bad >news is it has moved into my ankles!!I look like I have two baseballs >sitting on the outsides of them and golfballs on the insides. This is the >first time I have ever had so much swelling and pain! It is almost >impossible to walk. > Does anyone have any hints on how to help this condition? My internist >prescribed compression hose. Has anyone tried these before? All advice is >mucho appreciated! >leslie > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2000 Report Share Posted July 1, 2000 Claudine, I've only had my PCR (viral load) done in March '99 (250,000), in Sept. '99 (5 million), and then it was " non-detectable " at 12-weeks into treatment in Jan. 2000, as well as at the end of treatment in early April. My doc said the next PCR test would be 6 months (24 weeks) after ending treatment which would be this coming mid-September. I only had the basic " other " bloodwork done, on my own desire, 12 weeks after ending treatment because I just wanted to see if things like my red blood count and hemoglobin had returned back to normal. I didn't have a PCR test done now because my doc only put in an order for that for the mid-September date. I have read and been told over and over again that the liver enzymes (LFT's) and the viral load (PCR) don't necessarily go up and down together. I'll wait and see what my doc says....hopefully my PCR is still non-detectable, but I am worried about it. Sara In a message dated 07/01/2000 4:14:24 AM Pacific Daylight Time, Hepatitis Cegroups writes: > Date: Fri, 30 Jun 2000 11:19:13 -0700 (PDT) > From: claudine intexas <claudineintexas@...> > Subject: Re: Advice Needed! > > Sara, > Did you have a PCR done? > If you have relapsed that could explain why your > LFT's are rising again. (I sure hated typing that.) I > agree that you should talk to your specialist about > this. Claudine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2000 Report Share Posted July 1, 2000 Claudine, I've only had my PCR (viral load) done in March '99 (250,000), in Sept. '99 (5 million), and then it was " non-detectable " at 12-weeks into treatment in Jan. 2000, as well as at the end of treatment in early April. My doc said the next PCR test would be 6 months (24 weeks) after ending treatment which would be this coming mid-September. I only had the basic " other " bloodwork done, on my own desire, 12 weeks after ending treatment because I just wanted to see if things like my red blood count and hemoglobin had returned back to normal. I didn't have a PCR test done now because my doc only put in an order for that for the mid-September date. I have read and been told over and over again that the liver enzymes (LFT's) and the viral load (PCR) don't necessarily go up and down together. I'll wait and see what my doc says....hopefully my PCR is still non-detectable, but I am worried about it. Sara In a message dated 07/01/2000 4:14:24 AM Pacific Daylight Time, Hepatitis Cegroups writes: > Date: Fri, 30 Jun 2000 11:19:13 -0700 (PDT) > From: claudine intexas <claudineintexas@...> > Subject: Re: Advice Needed! > > Sara, > Did you have a PCR done? > If you have relapsed that could explain why your > LFT's are rising again. (I sure hated typing that.) I > agree that you should talk to your specialist about > this. Claudine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2000 Report Share Posted July 1, 2000 --- srw1954@... wrote: > I have read and been told over and over again that > the liver enzymes (LFT's) > and the viral load (PCR) don't necessarily go up and > down together. Dear Sara, You are absolutely right. They don't, and I hope there is not any correlation this time too. September will be here before you know it. (I can't believe this year is already half-way over!) Take care! ===== Claudine claudinecrews@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2000 Report Share Posted July 3, 2000 Dear Marty, Thanks so much for your wise replies to my concerns. My partner also thinks that it was probably ill-advised to get these tests for " normal blood counts " done before the 6 months after end-of-treatment because it doesn't give me a lot of useful information and more stress than not. My doctor's nurse also said that some things can be a bit wacky for a while as your body readjusts after this intense chemo treatment. I left a voicemail message for my doc too, but I don't expect that he'll call me back until he has some time after the holiday weekend. In your note to Suzy earlier today however, you said that getting the full bloodwork including viral load done at the end of therapy and 6-months after e-o-t, you should also have all of this done at 4 weeks after ending therapy. Well, that's what I did NOT get! I was told that I was supposed to go from having bloodwork done on the day I ended treatment and then have to wait until 6 months later without having ANY bloodwork done in between. Like I said, I wasn't asking for or expecting to have the viral load done in between, but I just wanted to know if my other blood counts, (the ones that were low or high out of normal range) had returned to normal, particularly my rbc's, wbc's, and hemoglobin. Even though I have been feeling pretty good, I still don't feel 100% some of the time and I just wanted to know if perhaps I was still a bit anemic or not. That's why I chose to get the bloodwork done at the midpoint between ending therapy and the 6-month mark. Perhaps I shouldn't have because I got a little stressed from finding out the results I did, but I was also a little stressed not knowing. I'm the kind of person who doesn't feel in control when I don't know and I thought getting these tests would lessen my wonder and worry rather than increase it. Thanks again for taking the time to reply. I respect your opinions and appreciate your responses. Sara In a message dated 07/03/2000 3:13:27 AM Pacific Daylight Time, Hepatitis Cegroups writes: > The normal blood counts, with viral loads are done at the end of > therapy; about 4 weeks after the end of therapy, and then 6 months after > completion of therapy. After that it will probably be yearly. This is > all assuming there are no other abnormalities, or medical problems that > need monitoring. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2000 Report Share Posted July 3, 2000 Dear Marty, Thanks so much for your wise replies to my concerns. My partner also thinks that it was probably ill-advised to get these tests for " normal blood counts " done before the 6 months after end-of-treatment because it doesn't give me a lot of useful information and more stress than not. My doctor's nurse also said that some things can be a bit wacky for a while as your body readjusts after this intense chemo treatment. I left a voicemail message for my doc too, but I don't expect that he'll call me back until he has some time after the holiday weekend. In your note to Suzy earlier today however, you said that getting the full bloodwork including viral load done at the end of therapy and 6-months after e-o-t, you should also have all of this done at 4 weeks after ending therapy. Well, that's what I did NOT get! I was told that I was supposed to go from having bloodwork done on the day I ended treatment and then have to wait until 6 months later without having ANY bloodwork done in between. Like I said, I wasn't asking for or expecting to have the viral load done in between, but I just wanted to know if my other blood counts, (the ones that were low or high out of normal range) had returned to normal, particularly my rbc's, wbc's, and hemoglobin. Even though I have been feeling pretty good, I still don't feel 100% some of the time and I just wanted to know if perhaps I was still a bit anemic or not. That's why I chose to get the bloodwork done at the midpoint between ending therapy and the 6-month mark. Perhaps I shouldn't have because I got a little stressed from finding out the results I did, but I was also a little stressed not knowing. I'm the kind of person who doesn't feel in control when I don't know and I thought getting these tests would lessen my wonder and worry rather than increase it. Thanks again for taking the time to reply. I respect your opinions and appreciate your responses. Sara In a message dated 07/03/2000 3:13:27 AM Pacific Daylight Time, Hepatitis Cegroups writes: > The normal blood counts, with viral loads are done at the end of > therapy; about 4 weeks after the end of therapy, and then 6 months after > completion of therapy. After that it will probably be yearly. This is > all assuming there are no other abnormalities, or medical problems that > need monitoring. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Marty, Again, thanks for your response. I appreciate your concern that I get a clearer understanding of the whole picture, and I appreciate your opinions. To summarize my understanding of your " ramblings " {:>) ...the basic bloodwork (LFT's and other blood counts) do not need to be done in between the last day of treatment and 6 months later because they can be all over the board and don't really give good information you can do much with....the viral load, however, should be done on the last day of treatment, 4 weeks later, and then 5 months after that. You gave a number of reasons you think my doctor might not have ordered the " 4 weeks later " viral load test (as you know, he didn't order any tests to be done in between unless I started to have problems, feeling ill instead of better for instance). You may have hit on some possibilities of " why " , but I guess I'll have to ask him myself. Not that he'll tell me the whole truth, but he's always seemed to be a pretty straight forward " you get what you see " type of guy. He's also seemed to be a pretty aggressive doctor. His name is Gish and he's a leading Hep C and liver transplant specialist in this country and probably the world I think. He put me on the top dosage of Ribaviran, 1200 mg., even though I was borderline on the weight limitations for that dosage. He only reduced me to 1000 mg daily in the last 4 weeks of my 24-weeks because my hemoglobin had dropped to 8.6, even though it had dropped below 10 after the third month, and I had dropped 12-15 pounds by then so my weight was well below the limitations to be on 1200 mg. I believe he really wanted to ensure I was getting as much meds as I could to get the best benefit and effectiveness for my situation. Up to this point, I also believe he has his own protocols and beliefs of what's needed and what works, and that he certainly didn't " forget " to order the " 4-week after ending " viral load test. I also don't believe though that he " knows it all " , however. He probably isn't so much following any HMO or other directives as you suggest, although that may be a possibility, as much as following some sort of scientific research formula that doesn't focus as much on the patient as on the outcome. He has also just written and published a book with a leading hep c acupuncturist and oriental medicine practitioner, Misha Cohen, on treating hep c with both eastern and western approaches. For the past year I have seen a colleague of Misha's for acupuncture and chinese herbs for my hep c and he has had no problem with that or with my taking milk thistle and dandelion (western herbs) at all. So go figure. I feel very fortunate to have him as my doctor, but he's the kind of guy that respects that I research and questions and get information from him and elsewhere and will take the time to answer my questions when I have them, but otherwise he's got his way of doing things and he must be doing something right to get where he's got to in this specialized field. He may or may not call me back this week, since I left him a message on his direct voicemail last Friday (he has sometimes even called me back on a weekend when I've had questions and concerns, and sometimes not called back at all). If he doesn't call back I'll just wait at this point and get my viral load done on 9/18/00 and we'll figure out where I stand at that point. If it's still non-detectable, great. He has previously told me he wouldn't check it again then until two years later. I'll push him for one year later and ask him again, why wait so long in between. If it is detectable, then he said he'd probably try to get me in a trial or study for Peg or something else soon thereafter. Thanks again so much Marty, for reading and responding to my " ramblings. " Take care and my best regards, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2000 Report Share Posted July 5, 2000 Marty, Again, thanks for your response. I appreciate your concern that I get a clearer understanding of the whole picture, and I appreciate your opinions. To summarize my understanding of your " ramblings " {:>) ...the basic bloodwork (LFT's and other blood counts) do not need to be done in between the last day of treatment and 6 months later because they can be all over the board and don't really give good information you can do much with....the viral load, however, should be done on the last day of treatment, 4 weeks later, and then 5 months after that. You gave a number of reasons you think my doctor might not have ordered the " 4 weeks later " viral load test (as you know, he didn't order any tests to be done in between unless I started to have problems, feeling ill instead of better for instance). You may have hit on some possibilities of " why " , but I guess I'll have to ask him myself. Not that he'll tell me the whole truth, but he's always seemed to be a pretty straight forward " you get what you see " type of guy. He's also seemed to be a pretty aggressive doctor. His name is Gish and he's a leading Hep C and liver transplant specialist in this country and probably the world I think. He put me on the top dosage of Ribaviran, 1200 mg., even though I was borderline on the weight limitations for that dosage. He only reduced me to 1000 mg daily in the last 4 weeks of my 24-weeks because my hemoglobin had dropped to 8.6, even though it had dropped below 10 after the third month, and I had dropped 12-15 pounds by then so my weight was well below the limitations to be on 1200 mg. I believe he really wanted to ensure I was getting as much meds as I could to get the best benefit and effectiveness for my situation. Up to this point, I also believe he has his own protocols and beliefs of what's needed and what works, and that he certainly didn't " forget " to order the " 4-week after ending " viral load test. I also don't believe though that he " knows it all " , however. He probably isn't so much following any HMO or other directives as you suggest, although that may be a possibility, as much as following some sort of scientific research formula that doesn't focus as much on the patient as on the outcome. He has also just written and published a book with a leading hep c acupuncturist and oriental medicine practitioner, Misha Cohen, on treating hep c with both eastern and western approaches. For the past year I have seen a colleague of Misha's for acupuncture and chinese herbs for my hep c and he has had no problem with that or with my taking milk thistle and dandelion (western herbs) at all. So go figure. I feel very fortunate to have him as my doctor, but he's the kind of guy that respects that I research and questions and get information from him and elsewhere and will take the time to answer my questions when I have them, but otherwise he's got his way of doing things and he must be doing something right to get where he's got to in this specialized field. He may or may not call me back this week, since I left him a message on his direct voicemail last Friday (he has sometimes even called me back on a weekend when I've had questions and concerns, and sometimes not called back at all). If he doesn't call back I'll just wait at this point and get my viral load done on 9/18/00 and we'll figure out where I stand at that point. If it's still non-detectable, great. He has previously told me he wouldn't check it again then until two years later. I'll push him for one year later and ask him again, why wait so long in between. If it is detectable, then he said he'd probably try to get me in a trial or study for Peg or something else soon thereafter. Thanks again so much Marty, for reading and responding to my " ramblings. " Take care and my best regards, Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Dear , Before I attempt to reply, tell me exactly what is in the chelation formula, including the dosage and how many you are doing a week. Ethel Fain wrote: > > Dear Ethel, I sure could have used you here yesterday. I went for the > fourth or fifth chelation yesterday. Let me preface by saying that I am > very sensitive to drugs and also when I start vomiting or dearrhea, only > phenergren suppositories will finally bring me out of it. But > yesterday, I had the chelation. Last week, I felt a bit weak and faint > afterwards on the way home but it was so fleeting and I did not think > anything about it. Just thought I needed to go eat. So yesterday, I am > doing the chelation and I began to feel really bad. Then I got really > hot - and their office is always so COLD! I started out feeling like I > had a bit of indigestion and then a terrible burning in my upper > intestines. I did not have orange juice with me and they had forgotten > to offer any so I got my apple and water bottle out and began eating and > drinking. By the end of the three hours, I was really sick. I should > have said something but Dr. was so very busy and just did not > want to bother him. When the needle had been removed, it was just too > late and I hit the floor. I was so out that DR. came out and > turned me on my back and put my knees up to my chin to move the blood to > my head. The most humbling experience is that I was so relaxed from > being out that I just had this flood of diarrea. Thank God I was wearing > pants! When I finally came to, I drug myself into the bathroom and had > a long, long bout of diarrea and diziness in there and laid in he > floor for a while. They had already called Bob to come get me. Dr. > felt that I had blown my calcium or blood sugar. I thought I was > okay at that time, although very smelley, and he put me in the car to > drive me home. About half way, the terrible projectile vomiting began. > Dr. had given me a calcium magnesium tablet after the iv when I > came to along with orange juice and obviously, I lost all of this. We > made numerous stops all the way home and all my clothing including coat, > scarf, pants, sweater all had to go in a plastic bag to be dropped off > at the cleaners and poor Bob had to clean out the car. The vomiting > had stopped by 7:00 p.m. but still had nausea. The diarrrea - which > really seemed like bile or chelation - was still going at 9:30 p.m. so I > took a phenergren suppostory and made it through the night. Am okay > today but just eating/drinking broth and very weak and tired with sore > muscles. I had terrible, terrible chllls in the marrow of my bones and > how they ached. > So advice is now needed. I was scheduled to have hydrogen peroxide > iv on Thursday but have cancelled. I know I need to build up after this > episode. Does this sound like calcium or blood sugar and how do I avoid > this? If this happens again, I don't think I will have the courage to > do this after that. deWet is still in New York so can't call him until > next week. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 500 ml sterile water bag 10 cc EDTA 15cc 30 cc vitamin C 1 cc B-5 Dexpanthenol 1 cc. B-complex 100 4 cc. magnesium sulfate 20 cc sodium bicard 5 cc. HCL 1 cc. folate/folic acid 1 cc. selenium 1 cc B-1 1 cc. B6-pyradoxine 200 mg./ml 1 cc. hydroxycobalamine 3000 mg Just so you know, this is Dr. deWet's recipe. In addition, he also adds 12 cc. glutathione 100 mg/ml but Dr. does not put that in there but instead has me do that orally. I do not know for certain that the ingredients are exactly the same. I just gave this recipe to DR. and ASSUMED. I have been doing this every Monday and am schedule again for next Monday but that would be before DeWet gets back and I am afraid. Ethel, you will never know how appreciated you are here with your wisdom and willingness to be there for us. Love, Snooks wrote: > Dear , > > Before I attempt to reply, tell me exactly what is in the chelation > formula, including the dosage and how many you are doing a week. > > Ethel > > Fain wrote: > > > > Dear Ethel, I sure could have used you here yesterday. I went for the > > fourth or fifth chelation yesterday. Let me preface by saying that I am > > very sensitive to drugs and also when I start vomiting or dearrhea, only > > phenergren suppositories will finally bring me out of it. But > > yesterday, I had the chelation. Last week, I felt a bit weak and faint > > afterwards on the way home but it was so fleeting and I did not think > > anything about it. Just thought I needed to go eat. So yesterday, I am > > doing the chelation and I began to feel really bad. Then I got really > > hot - and their office is always so COLD! I started out feeling like I > > had a bit of indigestion and then a terrible burning in my upper > > intestines. I did not have orange juice with me and they had forgotten > > to offer any so I got my apple and water bottle out and began eating and > > drinking. By the end of the three hours, I was really sick. I should > > have said something but Dr. was so very busy and just did not > > want to bother him. When the needle had been removed, it was just too > > late and I hit the floor. I was so out that DR. came out and > > turned me on my back and put my knees up to my chin to move the blood to > > my head. The most humbling experience is that I was so relaxed from > > being out that I just had this flood of diarrea. Thank God I was wearing > > pants! When I finally came to, I drug myself into the bathroom and had > > a long, long bout of diarrea and diziness in there and laid in he > > floor for a while. They had already called Bob to come get me. Dr. > > felt that I had blown my calcium or blood sugar. I thought I was > > okay at that time, although very smelley, and he put me in the car to > > drive me home. About half way, the terrible projectile vomiting began. > > Dr. had given me a calcium magnesium tablet after the iv when I > > came to along with orange juice and obviously, I lost all of this. We > > made numerous stops all the way home and all my clothing including coat, > > scarf, pants, sweater all had to go in a plastic bag to be dropped off > > at the cleaners and poor Bob had to clean out the car. The vomiting > > had stopped by 7:00 p.m. but still had nausea. The diarrrea - which > > really seemed like bile or chelation - was still going at 9:30 p.m. so I > > took a phenergren suppostory and made it through the night. Am okay > > today but just eating/drinking broth and very weak and tired with sore > > muscles. I had terrible, terrible chllls in the marrow of my bones and > > how they ached. > > So advice is now needed. I was scheduled to have hydrogen peroxide > > iv on Thursday but have cancelled. I know I need to build up after this > > episode. Does this sound like calcium or blood sugar and how do I avoid > > this? If this happens again, I don't think I will have the courage to > > do this after that. deWet is still in New York so can't call him until > > next week. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 , I'm not sure just why you experienced the feelings of indigestion and burning. Does Dr. have an explanation? Possibly the EDTA dosage is too high. Aside from mineral imbalance that can occur from chelation, other side effects include fever, nausea, vomiting and diarrhea. EDTA may induce fever or it may be caused by an allergic type response to one of the several ingredients in the formula, a possible stress reaction or maybe even a contaminant in the solution Any of these factors could cause an elevation of body temperature and should disappear in a day or two. Are you coming down with the flu? Bouts of fever may be shortened with vitamin C. One out of twenty people will experience nausea which can be overcome with extra high doses of vitamin B6. B6 is also pulled out of the body by chelation. If nausea persists after increasing B6, you could try taking phenergren before the IV. According to Dr. in his book The Chelation Answer, diarrhea can be overcome with anti-diarrheal medication. This might be a good reference book for you to buy. Other adverse reactions are chills, anemia, various skin eruptions, a feeling of unwellness, weariness, thirst, muscle cramps, back pain, abdominal pain and lack of appetite. All of these symptoms disappear rapidly when the EDTA dosage is cut or treatment discontinued. One can experience excessive fatigue and a feeling of weakness. This is probably due to a lower concentration of potassium, magnesium or zinc ions in the body cells. Potassium and magnesium are pulled out of the blood by chelation and must be replaced. Try eating bananas for the potassium. Joint pains - feeling like you are coming down with the flu. This symptom usually is seen in people receiving two to three chelation IVs a week. If it happens, frequency of treatments is decreased to 1 per week. Also the dose of ingredients may be lowered or rate of infusion lessened. You can experience a drop in blood pressure when standing upright. EDTA can temporarily lower blood pressure causing weakness and dizziness. Rise slowly from sitting position. Also, some people are allergic to the preservative in the B vitamins. I had that problem and had to omit it from the formula. I also ran into a brick wall about the 10th IV and had to reduce the EDTA down to 10 cc and then build back up. I never did get back to 20 cc though. If you started chelation with an empty stomach as you did last week, it can leave you weak and faint, but I've not heard of that causing a person to have indigestion and burning. You should eat before and during chelation. For 4-1/2 months, I spent 7 hours a day in an office where people were getting chelation therapy all through the day and not once did I ever see anyone experience an adverse reaction. The formula you are using is different than the ones I've seen, and it appears to me to be low in mineral replacement. Dr. has anywhere from 8 to 12 chelation patients a day and she has done this for years. Here is her formula - 500 cc lactated ringers - a sterile solution of specified amounts of calcium chloride, potassium chloride, sodium chloride, and sodium lactate in water to replace electrolytes. 10 cc vitamin C 1/2 cc heparin - to prevent thrombophlebitis 1 cc B12 1 cc dexapanthenol EDTA - start with 10cc for first infusion. If well tolerated raise to 15 cc and then 20 cc. 7 cc magnesium chloride 3 to 4 cc potassium chloride 1 cc B complex - only if patient not allergic to it 1 to 2 cc sodium bicarb if sensative. (The formula you are using calls for 20 cc sodium bicarb.) Dr. used this formula for her scleroderma patients - normally giving two chelation IVs a week - providing the kidneys could handle the toxins. If the patient had good veins, she would give one hydrogen peroxide IV to every 4 chelation IVs. Hopefully with the above information you and Dr. can decide what adjustments need to be made for you. Take the rest of the week off and give your body time to recoup. Love, Ethel Fain wrote: > > 500 ml sterile water bag > 10 cc EDTA 15cc > 30 cc vitamin C > 1 cc B-5 Dexpanthenol > 1 cc. B-complex 100 > 4 cc. magnesium sulfate > 20 cc sodium bicard > 5 cc. HCL > 1 cc. folate/folic acid > 1 cc. selenium > 1 cc B-1 > 1 cc. B6-pyradoxine 200 mg./ml > 1 cc. hydroxycobalamine 3000 mg > > Just so you know, this is Dr. deWet's recipe. In addition, he also adds 12 > cc. glutathione 100 mg/ml but Dr. does not put that in there but > instead has me do that orally. I do not know for certain that the ingredients > are exactly the same. I just gave this recipe to DR. and ASSUMED. I > have been doing this every Monday and am schedule again for next Monday but > that would be before DeWet gets back and I am afraid. Ethel, you will never > know how appreciated you are here with your wisdom and willingness to be there > for us. Love, > > Snooks wrote: > > > Dear , > > > > Before I attempt to reply, tell me exactly what is in the chelation > > formula, including the dosage and how many you are doing a week. > > > > Ethel > > > > Fain wrote: > > > > > > Dear Ethel, I sure could have used you here yesterday. I went for the > > > fourth or fifth chelation yesterday. Let me preface by saying that I am > > > very sensitive to drugs and also when I start vomiting or dearrhea, only > > > phenergren suppositories will finally bring me out of it. But > > > yesterday, I had the chelation. Last week, I felt a bit weak and faint > > > afterwards on the way home but it was so fleeting and I did not think > > > anything about it. Just thought I needed to go eat. So yesterday, I am > > > doing the chelation and I began to feel really bad. Then I got really > > > hot - and their office is always so COLD! I started out feeling like I > > > had a bit of indigestion and then a terrible burning in my upper > > > intestines. I did not have orange juice with me and they had forgotten > > > to offer any so I got my apple and water bottle out and began eating and > > > drinking. By the end of the three hours, I was really sick. I should > > > have said something but Dr. was so very busy and just did not > > > want to bother him. When the needle had been removed, it was just too > > > late and I hit the floor. I was so out that DR. came out and > > > turned me on my back and put my knees up to my chin to move the blood to > > > my head. The most humbling experience is that I was so relaxed from > > > being out that I just had this flood of diarrea. Thank God I was wearing > > > pants! When I finally came to, I drug myself into the bathroom and had > > > a long, long bout of diarrea and diziness in there and laid in he > > > floor for a while. They had already called Bob to come get me. Dr. > > > felt that I had blown my calcium or blood sugar. I thought I was > > > okay at that time, although very smelley, and he put me in the car to > > > drive me home. About half way, the terrible projectile vomiting began. > > > Dr. had given me a calcium magnesium tablet after the iv when I > > > came to along with orange juice and obviously, I lost all of this. We > > > made numerous stops all the way home and all my clothing including coat, > > > scarf, pants, sweater all had to go in a plastic bag to be dropped off > > > at the cleaners and poor Bob had to clean out the car. The vomiting > > > had stopped by 7:00 p.m. but still had nausea. The diarrrea - which > > > really seemed like bile or chelation - was still going at 9:30 p.m. so I > > > took a phenergren suppostory and made it through the night. Am okay > > > today but just eating/drinking broth and very weak and tired with sore > > > muscles. I had terrible, terrible chllls in the marrow of my bones and > > > how they ached. > > > So advice is now needed. I was scheduled to have hydrogen peroxide > > > iv on Thursday but have cancelled. I know I need to build up after this > > > episode. Does this sound like calcium or blood sugar and how do I avoid > > > this? If this happens again, I don't think I will have the courage to > > > do this after that. deWet is still in New York so can't call him until > > > next week. Love, > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 No, I was not coming down with the flu. Glad I had that going for me! All of those symptoms could have been describing me. Started with feeling of fullness ad indigestion, then terrible heat, then weakness. I never did stand up. I was going out in the chair so I tossed my pillow off my lap onto the floor and eased down just as I went out. I don't like hitting the floor from far up! Then diarrhea, then nausea. Yesterday was just empty of energy and of course the joint aches from such heaving and diarrhea. No appetite at all, terrible sense of fullness. Nothing sounded good. Still felt terribly full. I forced myself to eat about 1/4 c. phir - a Thai broth and rice noodle soup. Dranks lots of 7-up (I know it has sugar but could not get down water yet) and by evening was on hot tea and water. I know my body has been herxing in a big way even before I had this happen. Herxes in legs, hands, arms, brain. But I figured the herx was from the hydrogen peroxide iv and not the chelation. Guess I as unaware one could herx this much with chelation. If that is it, I can do this as that would be good news. We just need to figure out the magic formula so I don't faint and mess all over myself each time. And I have never gone to chelation with empty stomach. I have always made sure I had a big breakfast prior to. The time before, I just figured I needed to get something in my stomach as after that long, it is lunch time. I will be seeing DR. today, I think, and wiill discuss this. I may put off everything if I don't get to see him until maybe Dr. DeWet can talk to him if he is too busy to talk to me. I am not a coward but don't want to take unnecessary chances and it would be nice to mke this trip as easy as possible. I will order this book today and see if I can get it rushed in. Again, Ethel, apparently you have already been there and done that. What a wonderful source of information you are for us. Love, Snooks wrote: > , I'm not sure just why you experienced the feelings of > indigestion and burning. Does Dr. have an explanation? Possibly > the EDTA dosage is too high. Aside from mineral imbalance that can > occur from chelation, other side effects include fever, nausea, vomiting > and diarrhea. > > EDTA may induce fever or it may be caused by an allergic type response > to one of the several ingredients in the formula, a possible stress > reaction or maybe even a contaminant in the solution Any of these > factors could cause an elevation of body temperature and should > disappear in a day or two. Are you coming down with the flu? Bouts of > fever may be shortened with vitamin C. > > One out of twenty people will experience nausea which can be overcome > with extra high doses of vitamin B6. B6 is also pulled out of the body > by chelation. If nausea persists after increasing B6, you could try > taking phenergren before the IV. > > According to Dr. in his book The Chelation Answer, diarrhea can > be overcome with anti-diarrheal medication. This might be a good > reference book for you to buy. > > Other adverse reactions are chills, anemia, various skin eruptions, a > feeling of unwellness, weariness, thirst, muscle cramps, back pain, > abdominal pain and lack of appetite. All of these symptoms disappear > rapidly when the EDTA dosage is cut or treatment discontinued. > > One can experience excessive fatigue and a feeling of weakness. This is > probably due to a lower concentration of potassium, magnesium or zinc > ions in the body cells. Potassium and magnesium are pulled out of the > blood by chelation and must be replaced. Try eating bananas for the > potassium. > > Joint pains - feeling like you are coming down with the flu. This > symptom usually is seen in people receiving two to three chelation IVs a > week. If it happens, frequency of treatments is decreased to 1 per > week. Also the dose of ingredients may be lowered or rate of infusion > lessened. > > You can experience a drop in blood pressure when standing upright. EDTA > can temporarily lower blood pressure causing weakness and dizziness. > Rise slowly from sitting position. > > Also, some people are allergic to the preservative in the B vitamins. I > had that problem and had to omit it from the formula. I also ran into a > brick wall about the 10th IV and had to reduce the EDTA down to 10 cc > and then build back up. I never did get back to 20 cc though. > > If you started chelation with an empty stomach as you did last week, it > can leave you weak and faint, but I've not heard of that causing a > person to have indigestion and burning. You should eat before and > during chelation. For 4-1/2 months, I spent 7 hours a day in an office > where people were getting chelation therapy all through the day and not > once did I ever see anyone experience an adverse reaction. > > The formula you are using is different than the ones I've seen, and it > appears to me to be low in mineral replacement. > > Dr. has anywhere from 8 to 12 chelation patients a day and > she has done this for years. Here is her formula - > > 500 cc lactated ringers - a sterile solution of specified amounts of > calcium chloride, potassium chloride, sodium chloride, and sodium > lactate in water to replace electrolytes. > 10 cc vitamin C > 1/2 cc heparin - to prevent thrombophlebitis > 1 cc B12 > 1 cc dexapanthenol > EDTA - start with 10cc for first infusion. If well tolerated raise to > 15 cc and then 20 cc. > 7 cc magnesium chloride > 3 to 4 cc potassium chloride > 1 cc B complex - only if patient not allergic to it > 1 to 2 cc sodium bicarb if sensative. (The formula you are using calls > for 20 cc sodium bicarb.) > > Dr. used this formula for her scleroderma patients - normally > giving two chelation IVs a week - providing the kidneys could handle the > toxins. If the patient had good veins, she would give one hydrogen > peroxide IV to every 4 chelation IVs. > > Hopefully with the above information you and Dr. can decide what > adjustments need to be made for you. Take the rest of the week off and > give your body time to recoup. > > Love, > Ethel > > Fain wrote: > > > > 500 ml sterile water bag > > 10 cc EDTA 15cc > > 30 cc vitamin C > > 1 cc B-5 Dexpanthenol > > 1 cc. B-complex 100 > > 4 cc. magnesium sulfate > > 20 cc sodium bicard > > 5 cc. HCL > > 1 cc. folate/folic acid > > 1 cc. selenium > > 1 cc B-1 > > 1 cc. B6-pyradoxine 200 mg./ml > > 1 cc. hydroxycobalamine 3000 mg > > > > Just so you know, this is Dr. deWet's recipe. In addition, he also adds 12 > > cc. glutathione 100 mg/ml but Dr. does not put that in there but > > instead has me do that orally. I do not know for certain that the ingredients > > are exactly the same. I just gave this recipe to DR. and ASSUMED. I > > have been doing this every Monday and am schedule again for next Monday but > > that would be before DeWet gets back and I am afraid. Ethel, you will never > > know how appreciated you are here with your wisdom and willingness to be there > > for us. Love, > > > > Snooks wrote: > > > > > Dear , > > > > > > Before I attempt to reply, tell me exactly what is in the chelation > > > formula, including the dosage and how many you are doing a week. > > > > > > Ethel > > > > > > Fain wrote: > > > > > > > > Dear Ethel, I sure could have used you here yesterday. I went for the > > > > fourth or fifth chelation yesterday. Let me preface by saying that I am > > > > very sensitive to drugs and also when I start vomiting or dearrhea, only > > > > phenergren suppositories will finally bring me out of it. But > > > > yesterday, I had the chelation. Last week, I felt a bit weak and faint > > > > afterwards on the way home but it was so fleeting and I did not think > > > > anything about it. Just thought I needed to go eat. So yesterday, I am > > > > doing the chelation and I began to feel really bad. Then I got really > > > > hot - and their office is always so COLD! I started out feeling like I > > > > had a bit of indigestion and then a terrible burning in my upper > > > > intestines. I did not have orange juice with me and they had forgotten > > > > to offer any so I got my apple and water bottle out and began eating and > > > > drinking. By the end of the three hours, I was really sick. I should > > > > have said something but Dr. was so very busy and just did not > > > > want to bother him. When the needle had been removed, it was just too > > > > late and I hit the floor. I was so out that DR. came out and > > > > turned me on my back and put my knees up to my chin to move the blood to > > > > my head. The most humbling experience is that I was so relaxed from > > > > being out that I just had this flood of diarrea. Thank God I was wearing > > > > pants! When I finally came to, I drug myself into the bathroom and had > > > > a long, long bout of diarrea and diziness in there and laid in he > > > > floor for a while. They had already called Bob to come get me. Dr. > > > > felt that I had blown my calcium or blood sugar. I thought I was > > > > okay at that time, although very smelley, and he put me in the car to > > > > drive me home. About half way, the terrible projectile vomiting began. > > > > Dr. had given me a calcium magnesium tablet after the iv when I > > > > came to along with orange juice and obviously, I lost all of this. We > > > > made numerous stops all the way home and all my clothing including coat, > > > > scarf, pants, sweater all had to go in a plastic bag to be dropped off > > > > at the cleaners and poor Bob had to clean out the car. The vomiting > > > > had stopped by 7:00 p.m. but still had nausea. The diarrrea - which > > > > really seemed like bile or chelation - was still going at 9:30 p.m. so I > > > > took a phenergren suppostory and made it through the night. Am okay > > > > today but just eating/drinking broth and very weak and tired with sore > > > > muscles. I had terrible, terrible chllls in the marrow of my bones and > > > > how they ached. > > > > So advice is now needed. I was scheduled to have hydrogen peroxide > > > > iv on Thursday but have cancelled. I know I need to build up after this > > > > episode. Does this sound like calcium or blood sugar and how do I avoid > > > > this? If this happens again, I don't think I will have the courage to > > > > do this after that. deWet is still in New York so can't call him until > > > > next week. Love, > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2001 Report Share Posted February 28, 2001 , Sounds like you are really having a rough time, I am really sorry and hope that you can find something that will or they could give you something to make the side effects a little easier to deal with.. You will be in my prayers! Peace, Sherry No, I was not coming down with the flu. Glad I had that going for me! All of those symptoms could have been describing me. Started with feeling offullness ad indigestion, then terrible heat, then weakness. I never did stand up.I was going out in the chair so I tossed my pillow off my lap onto the floor andeased down just as I went out. I don't like hitting the floor from far up! Thendiarrhea, then nausea. Yesterday was just empty of energy and of course the jointaches from such heaving and diarrhea. No appetite at all, terrible sense offullness. Nothing sounded good. Still felt terribly full. I forced myself to eatabout 1/4 c. phir - a Thai broth and rice noodle soup. Dranks lots of 7-up (I knowit has sugar but could not get down water yet) and by evening was on hot tea andwater. I know my body has been herxing in a big way even before I had this happen.Herxes in legs, hands, arms, brain. But I figured the herx was from the hydrogenperoxide iv and not the chelation. Guess I as unaware one could herx this much withchelation. If that is it, I can do this as that would be good news. We just need tofigure out the magic formula so I don't faint and mess all over myself each time.And I have never gone to chelation with empty stomach. I have always made sure I hada big breakfast prior to. The time before, I just figured I needed to get somethingin my stomach as after that long, it is lunch time. I will be seeing DR. today, I think, and wiill discuss this. I may put off everything if I don't get tosee him until maybe Dr. DeWet can talk to him if he is too busy to talk to me. I amnot a coward but don't want to take unnecessary chances and it would be nice to mkethis trip as easy as possible. I will order this book today and see if I can get it rushed in. Again, Ethel,apparently you have already been there and done that. What a wonderful source ofinformation you are for us. Love, Snooks wrote:> , I'm not sure just why you experienced the feelings of> indigestion and burning. Does Dr. have an explanation? Possibly> the EDTA dosage is too high. Aside from mineral imbalance that can> occur from chelation, other side effects include fever, nausea, vomiting> and diarrhea.>> EDTA may induce fever or it may be caused by an allergic type response> to one of the several ingredients in the formula, a possible stress> reaction or maybe even a contaminant in the solution Any of these> factors could cause an elevation of body temperature and should> disappear in a day or two. Are you coming down with the flu? Bouts of> fever may be shortened with vitamin C.>> One out of twenty people will experience nausea which can be overcome> with extra high doses of vitamin B6. B6 is also pulled out of the body> by chelation. If nausea persists after increasing B6, you could try> taking phenergren before the IV.>> According to Dr. in his book The Chelation Answer, diarrhea can> be overcome with anti-diarrheal medication. This might be a good> reference book for you to buy.>> Other adverse reactions are chills, anemia, various skin eruptions, a> feeling of unwellness, weariness, thirst, muscle cramps, back pain,> abdominal pain and lack of appetite. All of these symptoms disappear> rapidly when the EDTA dosage is cut or treatment discontinued.>> One can experience excessive fatigue and a feeling of weakness. This is> probably due to a lower concentration of potassium, magnesium or zinc> ions in the body cells. Potassium and magnesium are pulled out of the> blood by chelation and must be replaced. Try eating bananas for the> potassium.>> Joint pains - feeling like you are coming down with the flu. This> symptom usually is seen in people receiving two to three chelation IVs a> week. If it happens, frequency of treatments is decreased to 1 per> week. Also the dose of ingredients may be lowered or rate of infusion> lessened.>> You can experience a drop in blood pressure when standing upright. EDTA> can temporarily lower blood pressure causing weakness and dizziness.> Rise slowly from sitting position.>> Also, some people are allergic to the preservative in the B vitamins. I> had that problem and had to omit it from the formula. I also ran into a> brick wall about the 10th IV and had to reduce the EDTA down to 10 cc> and then build back up. I never did get back to 20 cc though.>> If you started chelation with an empty stomach as you did last week, it> can leave you weak and faint, but I've not heard of that causing a> person to have indigestion and burning. You should eat before and> during chelation. For 4-1/2 months, I spent 7 hours a day in an office> where people were getting chelation therapy all through the day and not> once did I ever see anyone experience an adverse reaction.>> The formula you are using is different than the ones I've seen, and it> appears to me to be low in mineral replacement.>> Dr. has anywhere from 8 to 12 chelation patients a day and> she has done this for years. Here is her formula ->> 500 cc lactated ringers - a sterile solution of specified amounts of> calcium chloride, potassium chloride, sodium chloride, and sodium> lactate in water to replace electrolytes.> 10 cc vitamin C> 1/2 cc heparin - to prevent thrombophlebitis> 1 cc B12> 1 cc dexapanthenol> EDTA - start with 10cc for first infusion. If well tolerated raise to> 15 cc and then 20 cc.> 7 cc magnesium chloride> 3 to 4 cc potassium chloride> 1 cc B complex - only if patient not allergic to it> 1 to 2 cc sodium bicarb if sensative. (The formula you are using calls> for 20 cc sodium bicarb.)>> Dr. used this formula for her scleroderma patients - normally> giving two chelation IVs a week - providing the kidneys could handle the> toxins. If the patient had good veins, she would give one hydrogen> peroxide IV to every 4 chelation IVs.>> Hopefully with the above information you and Dr. can decide what> adjustments need to be made for you. Take the rest of the week off and> give your body time to recoup.>> Love,> Ethel>> Fain wrote:> >> > 500 ml sterile water bag> > 10 cc EDTA 15cc> > 30 cc vitamin C> > 1 cc B-5 Dexpanthenol> > 1 cc. B-complex 100> > 4 cc. magnesium sulfate> > 20 cc sodium bicard> > 5 cc. HCL> > 1 cc. folate/folic acid> > 1 cc. selenium> > 1 cc B-1> > 1 cc. B6-pyradoxine 200 mg./ml> > 1 cc. hydroxycobalamine 3000 mg> >> > Just so you know, this is Dr. deWet's recipe. In addition, he also adds 12> > cc. glutathione 100 mg/ml but Dr. does not put that in there but> > instead has me do that orally. I do not know for certain that the ingredients> > are exactly the same. I just gave this recipe to DR. and ASSUMED. I> > have been doing this every Monday and am schedule again for next Monday but> > that would be before DeWet gets back and I am afraid. Ethel, you will never> > know how appreciated you are here with your wisdom and willingness to be there> > for us. Love, > >> > Snooks wrote:> >> > > Dear ,> > >> > > Before I attempt to reply, tell me exactly what is in the chelation> > > formula, including the dosage and how many you are doing a week.> > >> > > Ethel> > >> > > Fain wrote:> > > >> > > > Dear Ethel, I sure could have used you here yesterday. I went for the> > > > fourth or fifth chelation yesterday. Let me preface by saying that I am> > > > very sensitive to drugs and also when I start vomiting or dearrhea, only> > > > phenergren suppositories will finally bring me out of it. But> > > > yesterday, I had the chelation. Last week, I felt a bit weak and faint> > > > afterwards on the way home but it was so fleeting and I did not think> > > > anything about it. Just thought I needed to go eat. So yesterday, I am> > > > doing the chelation and I began to feel really bad. Then I got really> > > > hot - and their office is always so COLD! I started out feeling like I> > > > had a bit of indigestion and then a terrible burning in my upper> > > > intestines. I did not have orange juice with me and they had forgotten> > > > to offer any so I got my apple and water bottle out and began eating and> > > > drinking. By the end of the three hours, I was really sick. I should> > > > have said something but Dr. was so very busy and just did not> > > > want to bother him. When the needle had been removed, it was just too> > > > late and I hit the floor. I was so out that DR. came out and> > > > turned me on my back and put my knees up to my chin to move the blood to> > > > my head. The most humbling experience is that I was so relaxed from> > > > being out that I just had this flood of diarrea. Thank God I was wearing> > > > pants! When I finally came to, I drug myself into the bathroom and had> > > > a long, long bout of diarrea and diziness in there and laid in he> > > > floor for a while. They had already called Bob to come get me. Dr.> > > > felt that I had blown my calcium or blood sugar. I thought I was> > > > okay at that time, although very smelley, and he put me in the car to> > > > drive me home. About half way, the terrible projectile vomiting began.> > > > Dr. had given me a calcium magnesium tablet after the iv when I> > > > came to along with orange juice and obviously, I lost all of this. We> > > > made numerous stops all the way home and all my clothing including coat,> > > > scarf, pants, sweater all had to go in a plastic bag to be dropped off> > > > at the cleaners and poor Bob had to clean out the car. The vomiting> > > > had stopped by 7:00 p.m. but still had nausea. The diarrrea - which> > > > really seemed like bile or chelation - was still going at 9:30 p.m. so I> > > > took a phenergren suppostory and made it through the night. Am okay> > > > today but just eating/drinking broth and very weak and tired with sore> > > > muscles. I had terrible, terrible chllls in the marrow of my bones and> > > > how they ached.> > > > So advice is now needed. I was scheduled to have hydrogen peroxide> > > > iv on Thursday but have cancelled. I know I need to build up after this> > > > episode. Does this sound like calcium or blood sugar and how do I avoid> > > > this? If this happens again, I don't think I will have the courage to> > > > do this after that. deWet is still in New York so can't call him until> > > > next week. Love, > >> > To unsubscribe, email: rheumatic-unsubscribeegroups> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Welcome to this group . I am Lori C. and I have been in this group for 2 years now. I was diagnosed with Autoimmune hepatitis in July 1996, and was put on the transplant list for a liver in Oct 1996 and recieved my transplant on March 11, 1997. By the time I was diagnosed prednisone would not toch what I had. I already had cirrhosis of the liver and has esophageal varices and had to have them banded before transplant. I was a very sick 30 year old woman who was given 1 year to live if I did not have a transplant. I am so thankful for this list even though I did not find it until after my transplant. Because I still have autoimmune hepatitis despite the transplant. It is just thought to be kept in check by the imunosupressants. In Sept 1999 after 2 1/2 years after transplant i was successfully weaned off prednisone, but it was very difficult. I too was very tired and felt like I had the flu some days. But feeling like you hae the flu is also symptoms of the AIH. In February 2001 I was told that the AIH had reocurred in my new liver, because I was off the prednisone and they had also taken me off the Cellcept in Nov. 2000 and that was enough to let my body attack my new liver. So I was put back on prednisone 30 mgs a day and am now weaned down to 8 mgs a day and every month I will go down 1 mg until I am off of it again. But I will always have to stay on the Cellcept and on Gengraf. It is not all that easy some days, but I take the bad with the good and usually there is more good. I thank God for my donor, and try to live each day to the fullest. I would certainly consider another less stressful job, if I was you. You need your rest so you can fight the AIH which is a chronic autoimmune disease. It will never go away, it can only be managed. Feel free to ask as many questions as you like, there are many smart and wonderful people here. I don't post too often, but I always read all the mail everday. Please take care and keep coming back here. We will listen!! God Bless! Lori Cummins/ Minnesota AIH~ liver tx 3~11~97 Mayo/ Rochester, MN [ ] Advice needed I'm 51 years old and live in Anglesey, North Wales in the UK. I have been diagnosed with autoimmune hepatitis. I beame jaundiced in early March, initial blood tests indicated autoimmune hepatitis and this was confirmed following a liver biopsy. I had a pretty bad experience with the biopsy(ies). They missed the liver with the first one! On the second one with the aid of an ultrasound scan they managed to pierce one of my biliary tracts, it was very painful indeed. I have been on predisnolone for the last 10 weeks. I started off at 30 mg per day for about five weeks, easing down to 10 mg over a month. Last week I moved down to 7.5 mg per day and over the next three months the plan is to move down to 5 mg per day assuming the liver fuction blood tests remain OK (they're OK at the moment). I must admit I haven't been feeling as well since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and sleep for a couple of hours most afternoons. I've been enocuraged to exercise and I'm walking and swimming regularly. I've been off work for 4 months and I'm seriously thinking of giving up my job and possibly taking up a less stressful (part time?) job when I'm feeling a bit better. My present job involves working long hours planning a manufacturing operation to meet deadlines. One of my main frustrations is the lack of a support group locally and finding someone else who's trying to come to terms with this condidtion; hence this e-mail. Any advice would be welcome. regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Welcome , We sure are getting alot of men lately. I think that it is great. My son has a mild case of AIH. I pray that it will stay mild for the rest of his life. There are others here who have a much more serious case of AIH. I'm sorry you had such a difficult time with your biopsy. Didn't they do an ultrasound beforehand? My son had an ultrasound first and they marked where to put the needle. Did they cause any serious injury to your biliary tract? There are alot of great people here. Ask anything, chances are someone has experienced something similar. This is also a great place for info. Debbie (Tommy's Mom) > [Original Message] > From: DWROBERTS <DWROBERTS@...> > < > > Date: 6/27/01 4:30:38 AM > Subject: [ ] Advice needed > > I'm 51 years old and live in Anglesey, North Wales in the UK. I have been diagnosed with autoimmune hepatitis. > > I beame jaundiced in early March, initial blood tests indicated autoimmune hepatitis and this was confirmed following a liver biopsy. I had a pretty bad experience with the biopsy(ies). They missed the liver with the first one! On the second one with the aid of an ultrasound scan they managed to pierce one of my biliary tracts, it was very painful indeed. > > I have been on predisnolone for the last 10 weeks. I started off at 30 mg per day for about five weeks, easing down to 10 mg over a month. Last week I moved down to 7.5 mg per day and over the next three months the plan is to move down to 5 mg per day assuming the liver fuction blood tests remain OK (they're OK at the moment). I must admit I haven't been feeling as well since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and sleep for a couple of hours most afternoons. > > I've been enocuraged to exercise and I'm walking and swimming regularly. > > I've been off work for 4 months and I'm seriously thinking of giving up my job and possibly taking up a less stressful (part time?) job when I'm feeling a bit better. My present job involves working long hours planning a manufacturing operation to meet deadlines. > > One of my main frustrations is the lack of a support group locally and finding someone else who's trying to come to terms with this condidtion; hence this e-mail. Any advice would be welcome. > > > regards > > > > --- Debbie Henry --- debbiehenry@... --- Make every moment count! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Welcome , We sure are getting alot of men lately. I think that it is great. My son has a mild case of AIH. I pray that it will stay mild for the rest of his life. There are others here who have a much more serious case of AIH. I'm sorry you had such a difficult time with your biopsy. Didn't they do an ultrasound beforehand? My son had an ultrasound first and they marked where to put the needle. Did they cause any serious injury to your biliary tract? Regarding your job, reducing stress is always good for your body. You need to rest and take care of yourself. If you can afford it, taking a less stressful job might be a good idea. Do you have a family you can lean on to help you? There are alot of great people here. Ask anything, chances are someone has experienced something similar. This is also a great place for info. Debbie (Tommy's Mom) > [Original Message] > From: DWROBERTS <DWROBERTS@...> > < > > Date: 6/27/01 4:30:38 AM > Subject: [ ] Advice needed > > I'm 51 years old and live in Anglesey, North Wales in the UK. I have been diagnosed with autoimmune hepatitis. > > I beame jaundiced in early March, initial blood tests indicated autoimmune hepatitis and this was confirmed following a liver biopsy. I had a pretty bad experience with the biopsy(ies). They missed the liver with the first one! On the second one with the aid of an ultrasound scan they managed to pierce one of my biliary tracts, it was very painful indeed. > > I have been on predisnolone for the last 10 weeks. I started off at 30 mg per day for about five weeks, easing down to 10 mg over a month. Last week I moved down to 7.5 mg per day and over the next three months the plan is to move down to 5 mg per day assuming the liver fuction blood tests remain OK (they're OK at the moment). I must admit I haven't been feeling as well since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and sleep for a couple of hours most afternoons. > > I've been enocuraged to exercise and I'm walking and swimming regularly. > > I've been off work for 4 months and I'm seriously thinking of giving up my job and possibly taking up a less stressful (part time?) job when I'm feeling a bit better. My present job involves working long hours planning a manufacturing operation to meet deadlines. > > One of my main frustrations is the lack of a support group locally and finding someone else who's trying to come to terms with this condidtion; hence this e-mail. Any advice would be welcome. > > > regards > > > > --- Debbie Henry --- debbiehenry@... --- Make every moment count! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Debbie Thanks very much for your e-mail and I hope your son is doing OK.. Regarding the biopsy, they did the first one blind and missed. Four weeks later they did an ultrasound beforehand to locate the liver but they managed to hit the biliary tract as well. They've checked me out and assured me there is no permanent damage, but I have not felt so good since this incident. As you can imagine I'm not too impressed. I'll be negotiating with work over the next couple of weeks to see if I can leave under circumstances that will provide me with an environment which will enable me to come to terms with this condition. I've been with them for 27 years so this should count for something. [ ] Advice needed > > > > I'm 51 years old and live in Anglesey, North Wales in the UK. I have been > diagnosed with autoimmune hepatitis. > > > > I beame jaundiced in early March, initial blood tests indicated > autoimmune hepatitis and this was confirmed following a liver biopsy. I had > a pretty bad experience with the biopsy(ies). They missed the liver with > the first one! On the second one with the aid of an ultrasound scan they > managed to pierce one of my biliary tracts, it was very painful indeed. > > > > I have been on predisnolone for the last 10 weeks. I started off at 30 mg > per day for about five weeks, easing down to 10 mg over a month. Last week > I moved down to 7.5 mg per day and over the next three months the plan is > to move down to 5 mg per day assuming the liver fuction blood tests remain > OK (they're OK at the moment). I must admit I haven't been feeling as well > since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and > sleep for a couple of hours most afternoons. > > > > I've been enocuraged to exercise and I'm walking and swimming regularly. > > > > I've been off work for 4 months and I'm seriously thinking of giving up > my job and possibly taking up a less stressful (part time?) job when I'm > feeling a bit better. My present job involves working long hours planning a > manufacturing operation to meet deadlines. > > > > One of my main frustrations is the lack of a support group locally and > finding someone else who's trying to come to terms with this condidtion; > hence this e-mail. Any advice would be welcome. > > > > > > regards > > > > > > > > > > > > --- Debbie Henry > --- debbiehenry@... > --- Make every moment count! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Lori, Thank you for your e-mail. It seems to me that you have had a very tough time of it. As I mentioned in my original e-mail, I've only been ill for 4 months. I'm coming to terms with the fact that I've got AIH for life and that it will have to be managed. I'll be talking to my employers over the next couple of weeks to see if I can find a favourable means of exiting the company which will give me the best chance to handle this problem. What are Cellcept and Gengraf? regards [ ] Advice needed I'm 51 years old and live in Anglesey, North Wales in the UK. I have been diagnosed with autoimmune hepatitis. I beame jaundiced in early March, initial blood tests indicated autoimmune hepatitis and this was confirmed following a liver biopsy. I had a pretty bad experience with the biopsy(ies). They missed the liver with the first one! On the second one with the aid of an ultrasound scan they managed to pierce one of my biliary tracts, it was very painful indeed. I have been on predisnolone for the last 10 weeks. I started off at 30 mg per day for about five weeks, easing down to 10 mg over a month. Last week I moved down to 7.5 mg per day and over the next three months the plan is to move down to 5 mg per day assuming the liver fuction blood tests remain OK (they're OK at the moment). I must admit I haven't been feeling as well since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and sleep for a couple of hours most afternoons. I've been enocuraged to exercise and I'm walking and swimming regularly. I've been off work for 4 months and I'm seriously thinking of giving up my job and possibly taking up a less stressful (part time?) job when I'm feeling a bit better. My present job involves working long hours planning a manufacturing operation to meet deadlines. One of my main frustrations is the lack of a support group locally and finding someone else who's trying to come to terms with this condidtion; hence this e-mail. Any advice would be welcome. regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2001 Report Share Posted June 27, 2001 Cellcept and Gengraf are both immunosuppressants(anti~rejection medications). They are both working very well, but they have their side effects as does the prednisone. Take it easy! Lori C. [ ] Advice needed I'm 51 years old and live in Anglesey, North Wales in the UK. I have been diagnosed with autoimmune hepatitis. I beame jaundiced in early March, initial blood tests indicated autoimmune hepatitis and this was confirmed following a liver biopsy. I had a pretty bad experience with the biopsy(ies). They missed the liver with the first one! On the second one with the aid of an ultrasound scan they managed to pierce one of my biliary tracts, it was very painful indeed. I have been on predisnolone for the last 10 weeks. I started off at 30 mg per day for about five weeks, easing down to 10 mg over a month. Last week I moved down to 7.5 mg per day and over the next three months the plan is to move down to 5 mg per day assuming the liver fuction blood tests remain OK (they're OK at the moment). I must admit I haven't been feeling as well since I've been on 10 mg per day (let alone 7.5 mg). I tire very easily and sleep for a couple of hours most afternoons. I've been enocuraged to exercise and I'm walking and swimming regularly. I've been off work for 4 months and I'm seriously thinking of giving up my job and possibly taking up a less stressful (part time?) job when I'm feeling a bit better. My present job involves working long hours planning a manufacturing operation to meet deadlines. One of my main frustrations is the lack of a support group locally and finding someone else who's trying to come to terms with this condidtion; hence this e-mail. Any advice would be welcome. regards Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Hey Gill, I was on Imuran for over a year. I can't remember now if it was tapered off but I sure was glad to get off of it! It is a pretty scary drug and I was afraid of the side effects if I stayed on too long. You will probably feel better when you are off of it. I know I did. It is not like coming down off of a high dose of prednisone. I did, however, have to go on another drug called cyclosporin. This enabled me to taper down to 5mg of prednisone daily. Try to think in positive terms: if you lab work looks good, it's a great sign. Tape a picture of a healthy liver to your mirror and look at it every morning. Start doing little things to get your energy level up like a walk around the block - but listen to your body and rest when you need to. Take care, kate [ ] advice needed > Hi Everyone > > Hope you are all okay today. Im having a tired day > today (again) and have no energy at all. I have my > appointment with the doctor at the end of the month > and he said that at this appointment if all of my labs > were okay he was going to take me off my Imuran (I > dont know if it has to be tapered down like the > prednisolone was) I am dreading it. He said because > of the possible side effects that he would like to try > me off the drug. Im so scared of getting sick again > and would like to hear from anyone who has came off > Imuran whether it be good or bad I need to prepare. > Also I would like to ask about dietry advice, my > doctor has never said anything about this and Id like > information on food/drinks etc. > > Take care all of you, > > Gill > AIH 99 > UK > e-mail furg@... > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2002 Report Share Posted July 1, 2002 Gill, Theoretically your doctor knows you best (or supposed to). In my case, my hepatologist said I have to be on 75mg Imuran probably for the rest of my life. I sought a second opinion - one of Seattle's best hepatogists/GI specialists - and he agreed. When I flared up the first time (when I was first diagnosed), and the second time (when I tapered from 15mg to 10mg prednisone), my liver enzymes climbed very quickly and I was asymptomatic (which was scary in itself) - I dont have symptoms until the enzymes are 1000+(!), so my doctor wants to prevent that from ever happening again. I am off prednisone now....the test is 6 months from now (which is the average time period one is off prednison before relapse...that's the time I guess for the steroid to leave our body completely)....to see if 75mg Imuran alone will prevent a relapse. I have my fingers crossed. This gives you an idea. Hopefully your doctor knows what he's doing...but you could raise your concerns to him as well, and see what he says. Better be safe than sorry. Good Luck! aisha >From: gill jones <furg692001@...> >Reply- > >Subject: [ ] advice needed >Date: Mon, 1 Jul 2002 16:42:38 +0100 (BST) > >Hi Everyone > >Hope you are all okay today. Im having a tired day >today (again) and have no energy at all. I have my >appointment with the doctor at the end of the month >and he said that at this appointment if all of my labs >were okay he was going to take me off my Imuran (I >dont know if it has to be tapered down like the >prednisolone was) I am dreading it. He said because >of the possible side effects that he would like to try >me off the drug. Im so scared of getting sick again >and would like to hear from anyone who has came off >Imuran whether it be good or bad I need to prepare. >Also I would like to ask about dietry advice, my >doctor has never said anything about this and Id like >information on food/drinks etc. > >Take care all of you, > >Gill >AIH 99 >UK >e-mail furg@... > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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