Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 John I feel for you. I am by far not an expert in your ailness. I am a gay mle HIV negative and have lossed a lot of friends what was deemed diagnosed with aids. My first reccomendation is prayer and having confidence in your body. Eat right as possible and drink plenty of water and juices, Whole foods, nuts, berries. Believe in your body. Laugh, think positive thoughts and yes obtain the drugs, just don't take them. that is my advice and I will pray for you even though I do not know you. Pat Patelos in North Carolina Patrick Patelos - john neal Wednesday, June 01, 2005 12:39 PM Cocktails anyone? I have been following these groups off and on for quite some time now, but have not really participated much. Now I have found myself in a bit of dilemma and would appreciate some feedback. To follow is my story. Thanks in advance for your input! Neal. I am HIV positive and currently afflicted with Autoimmune Hemolytic Anemia and Kaposi’s Sarcoma, the KS is also involving my left eye with a possibility of CMV. This has been a worsening situation for eight months and I first sought medical advice only two and a half months ago. This has resulted in a recent diagnosis of AIDS. First diagnosed with HIV in 1993, I completely trusted the medical establishment and followed advice/treatment without question. I was taking antiretroviral drugs from 1996-2000; however, for the past five years I have refused any such treatment after concluding the "Cure was worse than the Disease". After I decided for myself to discontinue HIV treatment I discovered the dissident point of view. By March my condition had progressed to the point where I could no longer continue without medical intervention. As I am uninsured/uninsurable, I had to see a Doctor at one of the local HIV clinics under the Ryan White Care Act. The Doctor stated that I had Kaposi’s Sarcoma and assumed that for this condition to exist I had to have less that 50 T-cells. He prescribed Seprta (a broad spectrum anti-biotic) on an ongoing basis as a prophylactic treatment for pneumocystis pneumonia; a treatment I refused as I had no indication of any respitory ailment and deemed this to be an incredible misuse of this drug. He also insisted I begin antiretroviral therapy immediately. All of this before he had seen any lab results whatsoever! For treatment of the Kaposi’s Sarcoma I was referred to UCSD (University of California at San Diego Medical Center). Lab results revealed that my CD4 count was 330 with a viral load of 480,000 and that I was Anemic. My primary Doctor had determined that I was Iron Deficient. The last time I saw this Doctor I told him my Anemia was worsening; a plea he ignored, instead he persisted prescribing antiretroviral drugs. Dissatisfied with his attitude, inaction, and lack of communication between his clinic and the Oncologist over at UCSD, I decided to find a different Doctor. I choose a new Doctor at UCSD based upon recommendation from a trusted friend. I saw him at the beginning of May and he suggested a fresh start - physical, labs, and medical history. He said he would see me again in a few weeks time. Later that evening he called me at home to tell me I had severe Anemia and return to the hospital the next morning for a blood transfusion. The next day I went for this transfusion and was told that they could not "Cross Type" by blood, as I had "Abnormal Antibodies". It was then decided that I would return on Sunday for a blood transfusion - at this point my hematocritic count was 14.8 (45-50 is normal, 15 is critical, below 5 normally results in cardiac arrest, stroke, coma, or death). On Sunday they still had not been able to find me the right blood and this would be a high risk transfusion, therefore I needed to be admitted as an inpatient. After ten more hours they could still not find blood - pissed off I went home! On Monday still no blood - I told them to call me if and when they found some. On Tuesday they decided to go with the "Least Incompatible Match" and admitted me to the hospital. Upon admission to UCSD my hematocritic count was 3.8 - clinically dead! I spent the next three days in the hospital (two in ICU) and received five blood transfusions. They also performed a surgery to biopsy a lymph node to rule out lymphatic cancer - remember we still have the Oncologist and Kaposi’s Sarcoma in the picture! The hospital stay was quite an adventure! One expects to see a lot of Doctors at UCSD as it is a training facility; however in my case I was seen by well over 70 Doctors the first two days. In fact there were five "Teams" working my case - General Medicine, HIV, Hematology, Oncology and Surgery. They were coming down from the La Jolla facility, the Medical School, and the VA Regional Medical Center- it seems as if everybody had to see, ask, poke, prod, and then scratch their head. They were all amazed by the fact that I walked into the hospital (still smoking cigarettes) with a Hematocrit of 3.8 and wondering how I could have KS with CD4 of 356 - actually up from the previous month’s 330 with a decrease in viral load to 329,000, without any treatment at all. Meanwhile, I’m taking this all in stride and they are all saying I should have been dead! I have my own theory - that I voiced loudly to anyone that was actually listening - of what was really happening, and that is maybe my illness has NOTHING TO DO WIT HIV AT ALL! I am genetically predisposed Spherocytosis - both my father and sister have it and my sister has suffered from Anemia. The genetic origins of Spherocytosis are the same as Kaposi’s Sarcoma, the Eastern Mediterranean - odd as we are of French and Scot decent but the gene got there somehow. Older men in this region live for years with KS without incident. As to the "Abnormal Antibodies" that prevented "Cross Typing" of my blood, I suffered from ITP (Immune Thrombocytopenic Purpura) back in 1997 - another autoimmune disorder that attacks the platelets instead of the red blood cells. This was eventually treated successfully by infusion of IVIG (immunoglobulin). IVIG is a blood product containing antibodies from thousands of donors and I received twelve infusions of this stuff. No real mystery as to the origin of the "Abnormal Antibodies"- THEY PUT THEM THERE! I concluded that none of this HIV related; therefore I DON’T HAVE AIDS! Of course none of the HIV people wanted to hear this and most others ignored it. However, I did turn a few heads and got some puzzled looks. Then one of the Hematologists gave me a slight smile through pursed lips and said with a wink and a smile, "You walk into my hospital with a Hematocritic of 3.8, you can do whatever you want, you’re bullet proof". One of the other Doctors confirmed I was right to refuse to take the Seprta the first Doctor prescribed. Alas, somebody was listening! Meanwhile, with my Anemia stabilized and my Hematocrit at 28 - above the critical 15 and below 30 that the CDC uses to define AIDS - I am back across the street at the Ambulatory Care Center in the clutches of the Oncologist and HIV Specialists. This last week we began treating the KS - and killing red blood cells - with chemotherapy by infusion of Doxil. Now it is time to confront the issue of antiretroviral therapy. Is it time once again to endlessly consume protease inhibitors, nukes, and non-nukes until my liver bursts? Now I am faced with the dilemma of caving into the established thinking and conforming to their protocol or being labeled as "Non- compliant ". The CDC instructions are not to treat "Non-Conforming" patients for non-life threatening ailments - this instruction was downloaded directly from the CDC’s own web site and shown to me by a dissident friend of mine. I am seriously ill and do need medical treatment. I also know that the HIV people truly believe in what they are doing and that they are right. This last hospitalization has bankrupted me - I have had to spend down all by assets to less that $2,000.00 to qualify for Medi-Cal. I am not able to work and have applied for Social Security - thank God I have paid off all my credit cards and have plenty of credit available or I would wind up homeless! I risk losing these benefits also if I am labeled as "Non-Compliant". I do not consider myself a dissident per se, but I do see many valid observations and a rational and logical thought process on their part. I tend to agree with Peter Duesberg’s perspective in that if HIV exists at all it is another harmless retrovirus that plays little or no role in developing AIDS and that this is a "multi-factorial"syndrome. Kary Mullis stated that using PCR to detect viral load is a misapplication of his technology - in fact he called it a viral load of crap - and all along he has been asking only one simple and valid question: "Where is the reference?" We are now in our third decade of AIDS and the virus is still missing! I am not convinced the benefits of antiretoviral therapy are worth the damage and discomfort that it causes, just to achieve some magic lab numbers. Do I risk being labeled "Non-Compliant" or do I take the drugs? Maybe I should just take the drugs from the pharmacy to the nearest garbage can! I have a real major decision to make here and any and all feedback will be very helpful. What do you think? «¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§ - PULSE ON WORLD HEALTH CONSPIRACIES! §Subscribe:......... - To :.... - Any information here in is for educational purpose only, it may be news related, purely speculation or someone's opinion. Always consult with a qualified health practitioner before deciding on any course of treatment, especially for serious or life-threatening illnesses.**COPYRIGHT NOTICE**In accordance with Title 17 U.S.C. Section 107,any copyrighted work in this message is distributed under fair use without profit or payment to those who have expressed a prior interest in receiving the included information for non-profit research and educational purposes only. http://www.law.cornell.edu/uscode/17/107.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Anna in response to your message to John. I understand the horrible effects of pancreatic cancer as it devastated my family with my Dad lost his life to cancer at age 79, Nov. 15, 2002. The doctors drugged him and let him die without Chemo, which the No Chemo was a good thing. My Dad was only sick for 3 weeks that we were aware of. I could go through details of what the doctors put him thru. When his MD sent him to the hospital first, He had ordered his gall bladder be removed and assigned a surgeon and then he left for vacation and could not be reached for 3 days. The surgeon was smart enough to realize the test results were indicating something far more serious than gall bladder removal would cure. He tested until he found the root of the problem and at that point it was to late. Dad had gone to his MD every 6 months for a complete physical and was due for one in just a few weeks. His MD just left it in the hand so of the surgeon and then the cancer specialist and never talked to Dad again. My mom would not let us pursue anything legal against the MD and she still sees him herself. Go figure. Fortunately, she is in perfect health and in great shape at 83 years old. Just thought I'd share that with you and let you know I share your lost as we least the man of steel, the indestructible. Patrick Patelos - " Anna Webb " <electricwind <health_and_healing > Thursday, June 02, 2005 9:50 AM Re: Cocktails anyone? Well then, isn't it amazing how we are " forced " in these times to educate ourselves and take an aggressive role in our own healthcare? Yet, when we do, we are labeled as non-compliant? I certainly feel your frustration. While I have no point of reference regarding many of your conditions, the anemia and cancer treatment is what caught my attention in your post. My Dad had terminal pancreatic cancer 3 years ago - and I bore witness to the methods and drastic treatments that our medical community seems to find satisfactory as the protocol of choice. You sound " on top of it all " so apologies in advance if this is redundant or you are already aware of this, but during chemotherapy, it seems they will allow your blood levels to drop below certain levels to be able to administer Procrit. I'm sure you've seen it advertised on TV - it's $2,500.00 per shot. My Dad had never had problems with anemia until he underwent chemo after which he had several transfusions and several Procrit shots. Also, take care not to eat/drink certain foods as they exacerbate anemia. It's easily searched on the Internet - tea, for example, blocks the cells ability to absorb iron. I think you already know what to do (you already answered your own question, IMO); because if you are labeled as non-compliant, you may as well fly to the beach somewhere and just enjoy your life as long as you can. The current healthcare community will continue to try to force square pegs into round holes because anything otherwise will require some thought, and worse, individuals risking their careers to prove points...and unfortunately all they do right now is whisper about it over cocktails. Again, while your anemia may be stabilized right now, it won't be for long while you are being treated for the cancer. AND, they will likely allow it to bottom out so they can give you Procrit and have the government pay for it. They must earn " brownie points " for using Procrit as treatment - or get really good kick backs. I truly believe that diet can greatly aid both the healing of the cancer AND keep the anemia in " check " while you are being treated. No one ever recommended any dietary changes or nutritional supplements to my Dad and I'm relatively certain they won't for you either. Bright blessings to you and thank you for sharing your circumstances in such an open, honest way. Peace - Anna " And I dreamed I saw the bomber jet planes riding shotgun in the sky, turning into butterflies above our nation. " ~Joni Mitchell - Woodstock Neal wrote: I do not consider myself a dissident per se, but I do see many valid observations and a rational and logical thought process on their part. I tend to agree with Peter Duesberg’s perspective in that if HIV exists at all it is another harmless retrovirus that plays little or no role in developing AIDS and that this is a " multi-factorial " syndrome. Kary Mullis stated that using PCR to detect viral load is a misapplication of his technology - in fact he called it a viral load of crap - and all along he has been asking only one simple and valid question: " Where is the reference? " We are now in our third decade of AIDS and the virus is still missing! I am not convinced the benefits of antiretoviral therapy are worth the damage and discomfort that it causes, just to achieve some magic lab numbers. Do I risk being labeled " Non-Compliant " or do I take the drugs? Maybe I should just take the drugs from the pharmacy to the nearest garbage can! I have a real major decision to make here and any and all feedback will be very helpful. What do you think? ________________________________ «¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤ » § - PULSE ON WORLD HEALTH CONSPIRACIES! § Subscribe:......... - To :.... - Any information here in is for educational purpose only, it may be news related, purely speculation or someone's opinion. Always consult with a qualified health practitioner before deciding on any course of treatment, especially for serious or life-threatening illnesses. **COPYRIGHT NOTICE** In accordance with Title 17 U.S.C. Section 107, any copyrighted work in this message is distributed under fair use without profit or payment to those who have expressed a prior interest in receiving the included information for non-profit research and educational purposes only. http://www.law.cornell.edu/uscode/17/107.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 I have been following these groups off and on for quite some time now, but have not really participated much. Now I have found myself in a bit of dilemma and would appreciate some feedback. To follow is my story. Thanks in advance for your input! Neal. I am HIV positive and currently afflicted with Autoimmune Hemolytic Anemia and Kaposi’s Sarcoma, the KS is also involving my left eye with a possibility of CMV. This has been a worsening situation for eight months and I first sought medical advice only two and a half months ago. This has resulted in a recent diagnosis of AIDS. First diagnosed with HIV in 1993, I completely trusted the medical establishment and followed advice/treatment without question. I was taking antiretroviral drugs from 1996-2000; however, for the past five years I have refused any such treatment after concluding the "Cure was worse than the Disease". After I decided for myself to discontinue HIV treatment I discovered the dissident point of view. By March my condition had progressed to the point where I could no longer continue without medical intervention. As I am uninsured/uninsurable, I had to see a Doctor at one of the local HIV clinics under the Ryan White Care Act. The Doctor stated that I had Kaposi’s Sarcoma and assumed that for this condition to exist I had to have less that 50 T-cells. He prescribed Seprta (a broad spectrum anti-biotic) on an ongoing basis as a prophylactic treatment for pneumocystis pneumonia; a treatment I refused as I had no indication of any respitory ailment and deemed this to be an incredible misuse of this drug. He also insisted I begin antiretroviral therapy immediately. All of this before he had seen any lab results whatsoever! For treatment of the Kaposi’s Sarcoma I was referred to UCSD (University of California at San Diego Medical Center). Lab results revealed that my CD4 count was 330 with a viral load of 480,000 and that I was Anemic. My primary Doctor had determined that I was Iron Deficient. The last time I saw this Doctor I told him my Anemia was worsening; a plea he ignored, instead he persisted prescribing antiretroviral drugs. Dissatisfied with his attitude, inaction, and lack of communication between his clinic and the Oncologist over at UCSD, I decided to find a different Doctor. I choose a new Doctor at UCSD based upon recommendation from a trusted friend. I saw him at the beginning of May and he suggested a fresh start - physical, labs, and medical history. He said he would see me again in a few weeks time. Later that evening he called me at home to tell me I had severe Anemia and return to the hospital the next morning for a blood transfusion. The next day I went for this transfusion and was told that they could not "Cross Type" by blood, as I had "Abnormal Antibodies". It was then decided that I would return on Sunday for a blood transfusion - at this point my hematocritic count was 14.8 (45-50 is normal, 15 is critical, below 5 normally results in cardiac arrest, stroke, coma, or death). On Sunday they still had not been able to find me the right blood and this would be a high risk transfusion, therefore I needed to be admitted as an inpatient. After ten more hours they could still not find blood - pissed off I went home! On Monday still no blood - I told them to call me if and when they found some. On Tuesday they decided to go with the "Least Incompatible Match" and admitted me to the hospital. Upon admission to UCSD my hematocritic count was 3.8 - clinically dead! I spent the next three days in the hospital (two in ICU) and received five blood transfusions. They also performed a surgery to biopsy a lymph node to rule out lymphatic cancer - remember we still have the Oncologist and Kaposi’s Sarcoma in the picture! The hospital stay was quite an adventure! One expects to see a lot of Doctors at UCSD as it is a training facility; however in my case I was seen by well over 70 Doctors the first two days. In fact there were five "Teams" working my case - General Medicine, HIV, Hematology, Oncology and Surgery. They were coming down from the La Jolla facility, the Medical School, and the VA Regional Medical Center- it seems as if everybody had to see, ask, poke, prod, and then scratch their head. They were all amazed by the fact that I walked into the hospital (still smoking cigarettes) with a Hematocrit of 3.8 and wondering how I could have KS with CD4 of 356 - actually up from the previous month’s 330 with a decrease in viral load to 329,000, without any treatment at all. Meanwhile, I’m taking this all in stride and they are all saying I should have been dead! I have my own theory - that I voiced loudly to anyone that was actually listening - of what was really happening, and that is maybe my illness has NOTHING TO DO WIT HIV AT ALL! I am genetically predisposed Spherocytosis - both my father and sister have it and my sister has suffered from Anemia. The genetic origins of Spherocytosis are the same as Kaposi’s Sarcoma, the Eastern Mediterranean - odd as we are of French and Scot decent but the gene got there somehow. Older men in this region live for years with KS without incident. As to the "Abnormal Antibodies" that prevented "Cross Typing" of my blood, I suffered from ITP (Immune Thrombocytopenic Purpura) back in 1997 - another autoimmune disorder that attacks the platelets instead of the red blood cells. This was eventually treated successfully by infusion of IVIG (immunoglobulin). IVIG is a blood product containing antibodies from thousands of donors and I received twelve infusions of this stuff. No real mystery as to the origin of the "Abnormal Antibodies"- THEY PUT THEM THERE! I concluded that none of this HIV related; therefore I DON’T HAVE AIDS! Of course none of the HIV people wanted to hear this and most others ignored it. However, I did turn a few heads and got some puzzled looks. Then one of the Hematologists gave me a slight smile through pursed lips and said with a wink and a smile, "You walk into my hospital with a Hematocritic of 3.8, you can do whatever you want, you’re bullet proof". One of the other Doctors confirmed I was right to refuse to take the Seprta the first Doctor prescribed. Alas, somebody was listening! Meanwhile, with my Anemia stabilized and my Hematocrit at 28 - above the critical 15 and below 30 that the CDC uses to define AIDS - I am back across the street at the Ambulatory Care Center in the clutches of the Oncologist and HIV Specialists. This last week we began treating the KS - and killing red blood cells - with chemotherapy by infusion of Doxil. Now it is time to confront the issue of antiretroviral therapy. Is it time once again to endlessly consume protease inhibitors, nukes, and non-nukes until my liver bursts? Now I am faced with the dilemma of caving into the established thinking and conforming to their protocol or being labeled as "Non- compliant ". The CDC instructions are not to treat "Non-Conforming" patients for non-life threatening ailments - this instruction was downloaded directly from the CDC’s own web site and shown to me by a dissident friend of mine. I am seriously ill and do need medical treatment. I also know that the HIV people truly believe in what they are doing and that they are right. This last hospitalization has bankrupted me - I have had to spend down all by assets to less that $2,000.00 to qualify for Medi-Cal. I am not able to work and have applied for Social Security - thank God I have paid off all my credit cards and have plenty of credit available or I would wind up homeless! I risk losing these benefits also if I am labeled as "Non-Compliant". I do not consider myself a dissident per se, but I do see many valid observations and a rational and logical thought process on their part. I tend to agree with Peter Duesberg’s perspective in that if HIV exists at all it is another harmless retrovirus that plays little or no role in developing AIDS and that this is a "multi-factorial"syndrome. Kary Mullis stated that using PCR to detect viral load is a misapplication of his technology - in fact he called it a viral load of crap - and all along he has been asking only one simple and valid question: "Where is the reference?" We are now in our third decade of AIDS and the virus is still missing! I am not convinced the benefits of antiretoviral therapy are worth the damage and discomfort that it causes, just to achieve some magic lab numbers. Do I risk being labeled "Non-Compliant" or do I take the drugs? Maybe I should just take the drugs from the pharmacy to the nearest garbage can! I have a real major decision to make here and any and all feedback will be very helpful. What do you think? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2005 Report Share Posted June 1, 2005 Your case while sounding hopeless isn't! You must have some good genetics going for you, to be able to keep going like you do. Now if you havn't already heard about this I want to inform you of the lowdosenaltrexone.org site.. I have been using this very inexpensive and highly successful drug for my M.S. for two years now, there are some pretty impressive testimonials coming from people using this treatment and basicaly no side effects.No needles, no problems except finding a Dr. to prescribe it. A side effect of using L.D.N. is an increase in " T " cells........ you may be a good candidate for this. Reg ---- 06/01/05 10:43:14 Cocktails anyone? I have been following these groups off and on for quite some time now, but have not really participated much. Now I have found myself in a bit of dilemma and would appreciate some feedback. To follow is my story. Thanks in advance for your input! Neal. I am HIV positive and currently afflicted with Autoimmune Hemolytic Anemia and Kaposi’s _______________ «¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤» § - PULSE ON WORLD HEALTH CONSPIRACIES! § Subscribe:......... - To :.... - Any information here in is for educational purpose only, it may be news related, purely speculation or someone's opinion. Always consult with a qualified health practitioner before deciding on any course of treatment, especially for serious or life-threatening illnesses. **COPYRIGHT NOTICE** In accordance with Title 17 U.S.C. Section 107, any copyrighted work in this message is distributed under fair use without profit or payment to those who have expressed a prior interest in receiving the included information for non-profit research and educational purposes only. http://www.law.cornell.edu/uscode/17/107.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Here are a few excellent sites for everyone here who has or is dealing with cancer. I would have been lost without these sites when my 21 year old daughter was diagnosed with Hodgkins Lymphoma. I was searching for a cure, not remission! The cure is out there, but hidden by conventional medicine. You see, the Cancer Industry would lose billions if everyone knew how to cure their own cancer! www.beating-cancer-gently.com www.curezone.com www.alternative-medicine-message-boards.info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 Well then, isn't it amazing how we are " forced " in these times to educate ourselves and take an aggressive role in our own healthcare? Yet, when we do, we are labeled as non-compliant? I certainly feel your frustration. While I have no point of reference regarding many of your conditions, the anemia and cancer treatment is what caught my attention in your post. My Dad had terminal pancreatic cancer 3 years ago - and I bore witness to the methods and drastic treatments that our medical community seems to find satisfactory as the protocol of choice. You sound " on top of it all " so apologies in advance if this is redundant or you are already aware of this, but during chemotherapy, it seems they will allow your blood levels to drop below certain levels to be able to administer Procrit. I'm sure you've seen it advertised on TV - it's $2,500.00 per shot. My Dad had never had problems with anemia until he underwent chemo after which he had several transfusions and several Procrit shots. Also, take care not to eat/drink certain foods as they exacerbate anemia. It's easily searched on the Internet - tea, for example, blocks the cells ability to absorb iron. I think you already know what to do (you already answered your own question, IMO); because if you are labeled as non-compliant, you may as well fly to the beach somewhere and just enjoy your life as long as you can. The current healthcare community will continue to try to force square pegs into round holes because anything otherwise will require some thought, and worse, individuals risking their careers to prove points...and unfortunately all they do right now is whisper about it over cocktails. Again, while your anemia may be stabilized right now, it won't be for long while you are being treated for the cancer. AND, they will likely allow it to bottom out so they can give you Procrit and have the government pay for it. They must earn " brownie points " for using Procrit as treatment - or get really good kick backs. I truly believe that diet can greatly aid both the healing of the cancer AND keep the anemia in " check " while you are being treated. No one ever recommended any dietary changes or nutritional supplements to my Dad and I'm relatively certain they won't for you either. Bright blessings to you and thank you for sharing your circumstances in such an open, honest way. Peace - Anna " And I dreamed I saw the bomber jet planes riding shotgun in the sky, turning into butterflies above our nation. " ~Joni Mitchell - Woodstock Neal wrote: I do not consider myself a dissident per se, but I do see many valid observations and a rational and logical thought process on their part. I tend to agree with Peter Duesberg’s perspective in that if HIV exists at all it is another harmless retrovirus that plays little or no role in developing AIDS and that this is a " multi-factorial " syndrome. Kary Mullis stated that using PCR to detect viral load is a misapplication of his technology - in fact he called it a viral load of crap - and all along he has been asking only one simple and valid question: " Where is the reference? " We are now in our third decade of AIDS and the virus is still missing! I am not convinced the benefits of antiretoviral therapy are worth the damage and discomfort that it causes, just to achieve some magic lab numbers. Do I risk being labeled " Non-Compliant " or do I take the drugs? Maybe I should just take the drugs from the pharmacy to the nearest garbage can! I have a real major decision to make here and any and all feedback will be very helpful. What do you think? ________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2005 Report Share Posted June 2, 2005 >Now I have found myself in a bit of dilemma and would appreciate some There is a wonderful healing technique taught at http://www.immunics.org . They claim to have healed AIDS with it. I have used it on lots of things with success. Good luck. Namaste ('The god in me honors the god in you'),Claudiahttp://www.naturalloveliness.com100% pure powdered mineral makeup. http://www.askclaudia.comAccurate Psychic Readings, Emotional Healing, SpiritualCounseling and much more. http://www.bodymindspirithealing.comEnergetic vibrational supplements for the 21st century and beyond. http://www.lightworkersupplies.comThe most beautiful metaphysical jewelry on the market today, Crystals, Fantasy Tees, Psychic Protection Seminar, and more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Greetings Patrick, It's a shame to have to share this particular commonality with someone, but thank you for your post. My Dad too was misdiagnosed with gall bladder issues - he was 69. AND, 6 months prior - was diagnosed with diabetes which did NOT run in his family. In the Summer of 2001, my Dad's blood sugar levels shot up past 400 - normal is between 80 and 120 I believe. The doc diagnosed him with diabetes and tried meds first - then put him on insulin injections. Obviously, the pancreatic tumor was upsetting his blood sugar balances. It NEVER became consistent - either dropping too low after taking the meds - or shooting too high. Then in January 2002, my Mom called from the ER - my Dad was having a gall bladder attack. He was finally diagnosed properly - but like your Dad's situation - it was too late. It had already spread from the pancreas to the liver, etc. The oncologist gave him a choice - do nothing (he implied that this would be alot of suffering) - or do chemo which will enhance the quality of life for his last few months. (WHAT A CROCK OF BULL!) So he chose the latter. The chemo side effects were devastating. I stopped by one day to find him crawling from the living room to the bathroom because his feet were so swollen he couldn't walk - my Mom had gone to the store. Come to think of it - it was the surgeon who also discovered that it was pancreatic cancer and not gall bladder issues. I don't mean to ramble - but in reading your post, I realize that docs are misdiagnosing Pancreatic cancer for both diabetes and gall bladder problems. Hopefully, this information will help others in catching a loved ones' illness early. Such a traumatic way to lose a loved one - I wish it on no one. And, in retrospect, the diabetes diagnoses right out of the blue - that should be an indication to people as diabetes didn't run on his side of the family. Peace to you and yours Patrick - Anna Patrick wrote: Anna in response to your message to John. I understand the horrible effects of pancreatic cancer as it devastated my family with my Dad lost his life to cancer at age 79, Nov. 15, 2002. The doctors drugged him and let him die without Chemo, which the No Chemo was a good thing. My Dad was only sick for 3 weeks that we were aware of. I could go through details of what the doctors put him thru. When his MD sent him to the hospital first, He had ordered his gall bladder be removed and assigned a surgeon and then he left for vacation and could not be reached for 3 days. The surgeon was smart enough to realize the test results were indicating something far more serious than gall bladder removal would cure. He tested until he found the root of the problem and at that point it was to late. Dad had gone to his MD every 6 months for a complete physical and was due for one in just a few weeks. His MD just left it in the hand so of the surgeon and then the cancer specialist and never talked to Dad again. My mom would not let us pursue anything legal against the MD and she still sees him herself. Go figure. Fortunately, she is in perfect health and in great shape at 83 years old. Just thought I'd share that with you and let you know I share your lost as we least the man of steel, the indestructible. Patrick Patelos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2005 Report Share Posted June 3, 2005 Anna, thanks for replying. Your thoughts and info RE: Pancreatic Cancer are appreciated. Fortunately my sister and I work in a family owned business and were both able to be with Dad most of the three weeks before he died and were in the same room with him when he died. I will never forget that. You mentioned your Dad having trouble making it to the bathroom. My Dad had trouble to. He weighed about 230 lbs. and He would roll on a chair with with wheels from a table on the porch. I would push him to the rest room. I vowed that when we could not get him to the bathroom I would call Hospice. I did a day and 1/2 before he died. They were wonderful. At that time he new he was dying. He told my Mom to sell everything and to let the kids live their lives and she is living up to his world. They have a beautiful hhome at Wrightsville Beach overlooking the sound. Mom is still there. My sister and I live near Raleigh and welcome her here when the time comes. My Mom and Dad were married in 1948 and they did everything together including running businesses, truly an amazing couple. The day before my dad died, I remember sitting and timing his breaths as he was breathing heavily. I think there were like 35-40 breathes per minute and the next morning I was clocking breathes again and they started slowing down. 2 minutes before death he breathed in 11 times and 3 times the last minute of his life. I will never forget that moment. Mom sat on the bed on her knees pounding the bed screaming No No! it was horrifying. Hospice said any nearby animals may go crazy. Mom and had had two cats at the time. the one that was his kept sneaking into the bedroom and hiding under the bed. When Dad died, that cat went literally crazy. We have a Gazebo on the pier and the cat ran out the cat door and jumped onto the roof of the gazebo. It was amazing. He really knew what was happening. The cat is still alive andis okay now, but that day as the rest of us, he lost it. Thank you for letting me talk to you. No one understands unless they have been thorugh it. My Dad could be a real a%*hole, but I worked for him from 1981 to 1996 and am very strong today and have been very successful, thaanks to him. I only remember the good times. He was not abusive, but loving and caring and firm with me and I appreciate it so much today. I have never learned more from anyone as much as I learned from him. What he taught you, stuck with you. Although he was well off, he had friends with much more $ than him and they would come to him for financial advice. A truly amazing man, Stanley Nicholas Patelos. Patrick Patrick Patelos - " Anna Webb " <electricwind <health_and_healing > Friday, June 03, 2005 9:57 AM Re: Cocktails anyone? Greetings Patrick, It's a shame to have to share this particular commonality with someone, but thank you for your post. My Dad too was misdiagnosed with gall bladder issues - he was 69. AND, 6 months prior - was diagnosed with diabetes which did NOT run in his family. In the Summer of 2001, my Dad's blood sugar levels shot up past 400 - normal is between 80 and 120 I believe. The doc diagnosed him with diabetes and tried meds first - then put him on insulin injections. Obviously, the pancreatic tumor was upsetting his blood sugar balances. It NEVER became consistent - either dropping too low after taking the meds - or shooting too high. Then in January 2002, my Mom called from the ER - my Dad was having a gall bladder attack. He was finally diagnosed properly - but like your Dad's situation - it was too late. It had already spread from the pancreas to the liver, etc. The oncologist gave him a choice - do nothing (he implied that this would be alot of suffering) - or do chemo which will enhance the quality of life for his last few months. (WHAT A CROCK OF BULL!) So he chose the latter. The chemo side effects were devastating. I stopped by one day to find him crawling from the living room to the bathroom because his feet were so swollen he couldn't walk - my Mom had gone to the store. Come to think of it - it was the surgeon who also discovered that it was pancreatic cancer and not gall bladder issues. I don't mean to ramble - but in reading your post, I realize that docs are misdiagnosing Pancreatic cancer for both diabetes and gall bladder problems. Hopefully, this information will help others in catching a loved ones' illness early. Such a traumatic way to lose a loved one - I wish it on no one. And, in retrospect, the diabetes diagnoses right out of the blue - that should be an indication to people as diabetes didn't run on his side of the family. Peace to you and yours Patrick - Anna Patrick wrote: Anna in response to your message to John. I understand the horrible effects of pancreatic cancer as it devastated my family with my Dad lost his life to cancer at age 79, Nov. 15, 2002. The doctors drugged him and let him die without Chemo, which the No Chemo was a good thing. My Dad was only sick for 3 weeks that we were aware of. I could go through details of what the doctors put him thru. When his MD sent him to the hospital first, He had ordered his gall bladder be removed and assigned a surgeon and then he left for vacation and could not be reached for 3 days. The surgeon was smart enough to realize the test results were indicating something far more serious than gall bladder removal would cure. He tested until he found the root of the problem and at that point it was to late. Dad had gone to his MD every 6 months for a complete physical and was due for one in just a few weeks. His MD just left it in the hand so of the surgeon and then the cancer specialist and never talked to Dad again. My mom would not let us pursue anything legal against the MD and she still sees him herself. Go figure. Fortunately, she is in perfect health and in great shape at 83 years old. Just thought I'd share that with you and let you know I share your lost as we least the man of steel, the indestructible. Patrick Patelos «¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤»§«¤»¥«¤ » § - PULSE ON WORLD HEALTH CONSPIRACIES! § Subscribe:......... - To :.... - Any information here in is for educational purpose only, it may be news related, purely speculation or someone's opinion. Always consult with a qualified health practitioner before deciding on any course of treatment, especially for serious or life-threatening illnesses. **COPYRIGHT NOTICE** In accordance with Title 17 U.S.C. Section 107, any copyrighted work in this message is distributed under fair use without profit or payment to those who have expressed a prior interest in receiving the included information for non-profit research and educational purposes only. http://www.law.cornell.edu/uscode/17/107.shtml Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2005 Report Share Posted June 4, 2005 John I was just reading recently the benifits of B-12 injections. It would be good if you could have a B-12 shot once a week. Also a good Mult B complex vit 1- 2 times a day. You need some good supplements, Good oils, like www.NordicNaturals.com And order the EFA's and take anywhere from 3- 6, 000 mgs a day in divided doses. Probotics' really strong ones, either Primal Defense, or Metagenic brand sells a really good one. High enzymes foods, like paypa, melons, Mango's, pineapple. You may even want to use a good digestive enzymes to ensure your digesting foods well. Have you been tested for yeast? You may need to be on some antifugals. Sorry to cut this short, too tired to write now. But this is a good start. Along with a diet rich in fresh fruits and vegs, lean meats. Get some sunshine in each day too. Blessings, Allie john neal <nealams2003Cocktails anyone?I have been following these groups off and on for quite some time now, but have not really participated much. Now I have found myself in a bit of dilemma and would appreciate some feedback. To follow is my story. Thanks in advance for your input! Neal.I am HIV positive and currently afflicted with Autoimmune Hemolytic Anemia and Kaposi’s Sarcoma, the KS is also involving my left eye with a possibility of CMV. This has been a worsening situation for eight months and I first sought medical advice only two and a half months ago. This has resulted in a recent diagnosis of AIDS.First diagnosed with HIV in 1993, I completely trusted the medical establishment and followed advice/treatment without question. I was taking antiretroviral drugs from 1996-2000; however, for the past five years I have refused any such treatment after concluding the "Cure was worse than the Disease". After I decided for myself to discontinue HIV treatment I discovered the dissident point of view.By March my condition had progressed to the point where I could no longer continue without medical intervention. As I am uninsured/uninsurable, I had to see a Doctor at one of the local HIV clinics under the Ryan White Care Act.The Doctor stated that I had Kaposi’s Sarcoma and assumed that for this condition to exist I had to have less that 50 T-cells. He prescribed Seprta (a broad spectrum anti-biotic) on an ongoing basis as a prophylactic treatment for pneumocystis pneumonia; a treatment I refused as I had no indication of any respitory ailment and deemed this to be an incredible misuse of this drug. He also insisted I begin antiretroviral therapy immediately. All of this before he had seen any lab results whatsoever! For treatment of the Kaposi’s Sarcoma I was referred to UCSD (University of California at San Diego Medical Center). Lab results revealed that my CD4 count was 330 with a viral load of 480,000 and that I was Anemic. My primary Doctor had determined that I was Iron Deficient. The last time I saw this Doctor I told him my Anemia was worsening; a plea he ignored, instead he persisted prescribing antiretroviral drugs. Dissatisfied with his attitude, inaction, and lack of communication between his clinic and the Oncologist over at UCSD, I decided to find a different Doctor.I choose a new Doctor at UCSD based upon recommendation from a trusted friend. I saw him at the beginning of May and he suggested a fresh start - physical, labs, and medical history. He said he would see me again in a few weeks time. Later that evening he called me at home to tell me I had severe Anemia and return to the hospital the next morning for a blood transfusion.The next day I went for this transfusion and was told that they could not "Cross Type" by blood, as I had "Abnormal Antibodies". It was then decided that I would return on Sunday for a blood transfusion - at this point my hematocritic count was 14.8 (45-50 is normal, 15 is critical, below 5 normally results in cardiac arrest, stroke, coma, or death).On Sunday they still had not been able to find me the right blood and this would be a high risk transfusion, therefore I needed to be admitted as an inpatient. After ten more hours they could still not find blood - pissed off I went home! On Monday still no blood - I told them to call me if and when they found some.On Tuesday they decided to go with the "Least Incompatible Match" and admitted me to the hospital. Upon admission to UCSD my hematocritic count was 3.8 - clinically dead! I spent the next three days in the hospital (two in ICU) and received five blood transfusions. They also performed a surgery to biopsy a lymph node to rule out lymphatic cancer - remember we still have the Oncologist and Kaposi’s Sarcoma in the picture!The hospital stay was quite an adventure! One expects to see a lot of Doctors at UCSD as it is a training facility; however in my case I was seen by well over 70 Doctors the first two days. In fact there were five "Teams" working my case - General Medicine, HIV, Hematology, Oncology and Surgery. They were coming down from the La Jolla facility, the Medical School, and the VA Regional Medical Center- it seems as if everybody had to see, ask, poke, prod, and then scratch their head.They were all amazed by the fact that I walked into the hospital (still smoking cigarettes) with a Hematocrit of 3.8 and wondering how I could have KS with CD4 of 356 - actually up from the previous month’s 330 with a decrease in viral load to 329,000, without any treatment at all.Meanwhile, I’m taking this all in stride and they are all saying I should have been dead!I have my own theory - that I voiced loudly to anyone that was actually listening - of what was really happening, and that is maybe my illness has NOTHING TO DO WIT HIV AT ALL! I am genetically predisposed Spherocytosis - both my father and sister have it and my sister has suffered from Anemia. The genetic origins of Spherocytosis are the same as Kaposi’s Sarcoma, the Eastern Mediterranean - odd as we are of French and Scot decent but the gene got there somehow. Older men in this region live for years with KS without incident.As to the "Abnormal Antibodies" that prevented "Cross Typing" of my blood, I suffered from ITP (Immune Thrombocytopenic Purpura) back in 1997 - another autoimmune disorder that attacks the platelets instead of the red blood cells. This was eventually treated successfully by infusion of IVIG (immunoglobulin). IVIG is a blood product containing antibodies from thousands of donors and I received twelve infusions of this stuff. No real mystery as to the origin of the "Abnormal Antibodies"- THEY PUT THEM THERE!I concluded that none of this HIV related; therefore I DON’T HAVE AIDS! Of course none of the HIV people wanted to hear this and most others ignored it. However, I did turn a few heads and got some puzzled looks. Then one of the Hematologists gave me a slight smile through pursed lips and said with a wink and a smile, "You walk into my hospital with a Hematocritic of 3.8, you can do whatever you want, you’re bullet proof". One of the other Doctors confirmed I was right to refuse to take the Seprta the first Doctor prescribed. Alas, somebody was listening!Meanwhile, with my Anemia stabilized and my Hematocrit at 28 - above the critical 15 and below 30 that the CDC uses to define AIDS - I am back across the street at the Ambulatory Care Center in the clutches of the Oncologist and HIV Specialists. This last week we began treating the KS - and killing red blood cells - with chemotherapy by infusion of Doxil. Now it is time to confront the issue of antiretroviral therapy. Is it time once again to endlessly consume protease inhibitors, nukes, and non-nukes until my liver bursts?Now I am faced with the dilemma of caving into the established thinking and conforming to their protocol or being labeled as "Non- compliant ". The CDC instructions are not to treat "Non-Conforming" patients for non-life threatening ailments - this instruction was downloaded directly from the CDC’s own web site and shown to me by a dissident friend of mine.I am seriously ill and do need medical treatment. I also know that the HIV people truly believe in what they are doing and that they are right. This last hospitalization has bankrupted me - I have had to spend down all by assets to less that $2,000.00 to qualify for Medi-Cal. I am not able to work and have applied for Social Security - thank God I have paid off all my credit cards and have plenty of credit available or I would wind up homeless! I risk losing these benefits also if I am labeled as "Non-Compliant".I do not consider myself a dissident per se, but I do see many valid observations and a rational and logical thought process on their part. I tend to agree with Peter Duesberg’s perspective in that if HIV exists at all it is another harmless retrovirus that plays little or no role in developing AIDS and that this is a "multi-factorial"syndrome. Kary Mullis stated that using PCR to detect viral load is a misapplication of his technology - in fact he called it a viral load of crap - and all along he has been asking only one simple and valid question: "Where is the reference?" We are now in our third decade of AIDS and the virus is still missing!I am not convinced the benefits of antiretoviral therapy are worth the damage and discomfort that it causes, just to achieve some magic lab numbers. Do I risk being labeled "Non-Compliant" or do I take the drugs? Maybe I should just take the drugs from the pharmacy to the nearest garbage can! I have a real major decision to make here and any and all feedback will be very helpful.What do you think? Quote Link to comment Share on other sites More sharing options...
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