why CFS/FM patients should not donate blood

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Mar 21, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    The following is a partial list of bloodborne diseases that can be transmitted via blood transfusions. Several of these pathogens are commonly found in CFS/FM patients. I, personally, have three of them, that I know of.

    For CFS/FM patients, giving blood is not a gift of life. You would be putting another person at risk. If the person getting blood is immunocompromised or is an infant, receiving these diseases through a blood transfusion can be fatal.



    from bloodbook.com
    There are many Blood borne, transfusion transmitted and related diseases. In the United States, many are openly and commonly written about in the press, and spoken of on the news..... some are not. Following here is a partial and growing list of the most commonly known Blood transfusion transmitted diseases, but for which no routine cost-effective laboratory testing is available.

    Clerical errors also contribute to transfusion transmission of harmful agents. These types of errors include, among others, the release of unsuitable units of Blood; accidental transfusion of autologous Blood to another recipient (autologous Blood may include infectious disease); and errors in testing.

    Hepatitis B - Hepatitis B virus (HBV) is transmitted through parenteral and sexual exposure. The mean incubation time is 90 days with a range of 30 to 180 days. Donor Blood is routinely tested for HBsAg and HBcAb. There is no routine testing for hepatitis A, because it is said to be rarely transmitted by Blood products in the United States.

    Recipients of Blood products can also be infected with hepatitis delta, which is a defective RNA virus that needs an HBV superinfection to replicate. Persons who have received a hepatitis B vaccination (recommended for all health care workers with patient contact) will have hepatitis B surface antibody present, but not HBsAg or HBcAb. Risk of transmission in the Unites States is said to be 1 in 66,000.

    Hepatitis B Foundation - Mutual support and information network for persons affected by hepatitis B. Includes information on online support groups at their web site. Genix Pharma - Offering pharmaceutical drugs and treatment of Chronic Hepatitis B, AIDS-HIV therapeutic, bacterial infections, analgesics and neutraceuticals.

    Hepatitis C - The hepatitis C virus (HCV) currently affects over four million people in the United States. This disease has reached epidemic proportions. It is the primary reason for liver transplantation in the United States hepatitis C virus (HCV) infection is still the most common transfusion transmitted infection. Persons at highest risk for the virus are those who received blood transfusions prior to 1991 or people with a history of IV drug abuse using shared needles. One attribute of this disease that contributes to the high rate of infection, is that the time from infection with the virus until manifestation of liver disease can be decades.

    The hepatitis C virus subtype varies worldwide. In Europe, types 1, 2 and 3 are the predominant genotypes with types 1a and 3a in the north-western countries and 1b in Hungary, Germany, Russia and Turkey. In North America, types 1a and 1b have been found. In Japan and Taiwan, types 1b, 2a and 2b predominate; type 6a in Hong Kong and Macau. Type 4 is found in Zaire, Central and North Africa; 5a in South Africa. The hepatitis C virus is taken into the body other than through the digestive tract. It must be inherited, transfused or injected in some manner. The sexual transmission rate is lower than once thought. At present, only testing for hepatitis C antibody is available. The antibody to the hepatitis C virus appears 54 to 192 days in a person's Blood after infection.

    If an infected person donates Blood prior to the appearance of this antibody the chance of that Blood being used in a transfusion is said to be one out of 103,000 donations, There are an estimated 15-million Blood transfusions each year. Risk of transmission in the Unites States is said to be 1 in 121,000. USFDA Hepatitis C Page - A new combination therapy is proving effective for some of the four million Americans infected with hepatitis C. Hep C Vets - Support site for veterans afflicted with the hepatitis C virus and their families.

    Hepatitis C Primer - Information about the Hepatitis C Virus. Human Immunodeficiency Virus (HIV) - In 1982 the first cases of AIDS transmitted from Blood or Blood components were reported, but little of the infection was known at that time, and even less was talked about publicly. By 1983 radical changes began to occur in the donor criteria to exclude those at high risk for transmission of HIV. The testing of Blood products for HIV started in 1985. It was a test to detect the presence of the antibody directed against HIV, rather than a direct test for HIV. Testing for HIV p24 antigen was mandated in 1996. Risk of transmission in the Unites States is said to be 1 in 563,000.

    Mayo HIV Clinic - Providing comprehensive services to persons living with Human Immunodeficiency Virus infection. USPHS/IDSA Guidelines - Guidelines for the Prevention of Opportunistic Infections in Persons Infected with HIV. Human Immunodeficiency Virus Infections in the Child Care Setting - From the "The ABC's of Safe and Healthy Child Care" handbook produced by the National Center for Infectious Diseases (NCID). Strategies for Preventing HIV in Women - Full discussion of risk factors and prevention strategies, and more.

    Human T-lymphocytotrophic Virus (HTLV-1) - This is a retrovirus that is endemic in Japan and the Caribbean. It is implicated as causing adult T-cell leukemia/lymphoma and a neurological disorder similar to multiple sclerosis. Blood is routinely screened for antibodies to HTLV-1 utilizing this relatively inexpensive test. Risk of transmission in the United States at this time is said to be 1 in 641,000. Dr. Moen's Research Group - Purification and Activation of Human T-Cell Leukemia Virus Type 1 Protease by Ali Javey. HTLV-1 - from British Columbia Ministry of Health.

    HGV - The Hepatitis G Virus is an RNA virus of the Flaviviridae family. HGV infection was originally associated with fulminant hepatitis, but recent studies have failed to prove a connection between HGV and clinical illness. It is primarily Blood borne and accounts for 0.3% of acute viral hepatitis estimated at 900 to 2000 infections per year in the United States In many countries, 1% to 2% of Blood donors test positive for HGV RNA & the prevalence of HGV infection is up to 10% to 15% in West African children. How this high prevalence is maintained is unknown, but this does suggest that sub-clinical infection is common.

    Therefore, HGV infection is probably much more frequent than studies of the prevalence of HGV RNA suggest. The virus is transmitted by the same routes as HCV and co-infection is common, however, this may represent a common source of infection rather than any clinical similarity between the two viruses. The clinical significance of HGV infection and HGV-HCV co-infection remains to be fully elucidated, but at present does not seem to be a major disease-causing factor. The majority of patients infected with HGV by Blood transfusion do not develop serious chronic hepatitis.

    Hepatitis G - Comprehensive information from Howard J. Worman, M. D. Discovery of Hepatitis G Virus - An article on the history of HGV by Dr. Mohammad Sultan Khuroo. Cryoglobulinemia - Cryoglobulinemia is a term given to a disorder of the Blood and refers to the presence of cryoglobulins in the blood. These are abnormal forms of protein molecules that precipitate (clump together) at cold temperatures and re-dissolve at normal body temperature. Therefore, when a person with cryoglobulinemia is exposed to cold, he or she may experience decreased circulation in the smaller blood vessels. This may lead to color changes in the skin, damage to the extremities, bleeding into the skin (purpura), hives and other problems. The underlying cause of this condition may include diseases of the immune system, such as Waldstrom's macroglobulinemia, or its malignant form, multiple myeloma, and some infectious diseases, such as the hepatitis C virus.

    There are treatments for Cryoglobulinemia, such as cryofiltration, which has proven extremely effective in easing complications of this disease such as organ damage and skin ulcers. Cryoglobulinemia Home Page - This Web site has been created as a central communication hub for people with cryoglobulinemia. It is loaded with quality information and a great starting point. Johns Hopkins Vasculitis Center - A quality illustrated article on the subject from a leader in research and treatment of this disorder. Cryoglobulinemia e-Group - Yahoo e-Group on the topic to support those people and their friends, who are affected by cryoglobulinemia.

    TTV - Transfusion Transmitted Virus is a relatively new virus becoming widely known in 1997 in patients with fulminant hepatitis and chronic liver disease of unknown etiology. TTV is an unenveloped, single stranded DNA virus. Two genetic groups have been identified, differing by 30% in nucleotide sequences. TTV DNA was detected in 47% of patients with fulminant non-A-G hepatitis and 46% of patients with chronic liver diseases of unknown etiology. The result suggests that TTV may be the cause of some cryptogenic liver diseases. In testing, the presence of TTV, was found in approximately 10% of U. S. volunteer Blood donors, 13% of commercial Blood donors, and 17% of intravenous drug abusers. The rate of TTV infection among U. S. non-A, non-B, non-C, non-D, non-E hepatitis patients was only 2%. HIV-Dent - Transfusion Transmitted Virus news Update site. TTV - Exhaustive article from Taipei Medical College; Dr. Jau-Shin WU.

    Cytomegalovirus (CMV) - The prevalence of the CMV antibody ranges from 50% to 80% of the population. Blood contaminated with CMV can cause problems in neonates or immunocompromised patients. Potential problems in selected patient populations can be prevented by transfusing CMV negative Blood or frozen, deglycerolized RBC's. Donor Blood is not routinely tested for CMV. CMV Research - Department of Immunotechnology, Lund University. Extensive Illustrated Article from McMaster University. Creutzfeldt-Jakob Disease (CJD) - A degenerative and fatal nervous system disorder. Affected individuals can remain asymptomatic for decades after infection and then progress rapidly to dementia, severe loss of coordination and death. We are told by the Blood establishment that the risk of CJD being transmitted through Blood products is 'theoretical.' The infectious agent has (yes, has) been found in Blood products.

    Today CJD is, in our opinion, under-researched, under-investigated and extremely under-reported. CJD cases around the world by geographical area show that CJD is more common than generally thought. This disease is feared and avoided by many medical professionals when diagnosed in its advanced stages. It resembles in many ways the infamous Mad Cow Disease or Bovine Spongiform Encephalopathy (BSE). There is also concern about Chronic Wasting Disease (New Mad Cow Disease). As in Mad Cow Disease, scientists believe abnormal brain proteins that have undergone a peculiar shape change can cause other brain proteins to do the same causing CJD. Variants are nCJD, vCJD and nvCJD.

    Transmission of CJD has been proven from human to human by the transplantation of dura mater, the injection of pituitary-derived human growth hormone, and more rarely by the reuse of EEG electrodes and corneal transplantation. Currently, there is no test for the disease, however, all Blood banking organizations in Europe, and now in the United States, prohibit Blood donation by individuals who have symptoms or a family history of symptoms. Blood donors are carefully questioned about family history of CJD and surgeries that involved transplanted dura mater. If they answer affirmatively to any of these questions, they are permanently deferred as a donor. We see here again the potential danger in the 'honor system' of Blood donation in the United States. There is no possibility of contracting CJD by making a normal Blood donation. 1997 CDC CJD article

    Prion Information KS and HHV-8 - While there appears to be association between Kaposi’s sarcoma (KS) and human herpes virus-8 (HHV-8) and), it is said to be unproven whether or not the virus is transfusion transmitted. Also, if it is transfusion transmitted, is it associated with development of KS. Again we see here at this time, in our opinion, another case of under-researching, under-investigating and extremely under-reporting.

    Leishmaniasis - Cases of transfusion-associated Leishmaniasis are growing each year world wide. This increase is increasingly associated with patients who are positive for HIV. Transfusion-associated Leishmaniasis requires that the parasites be present in the peripheral Blood of the donor, survive processing and storage in the Blood bank, and infect the recipient. In endemic areas where the population of potentially infected individuals may be much higher and the screening process for donors less rigorous, transfusion-associated Leishmaniasis is more common.

    Leishmaniasis is now found in over 90 countries. Again here we see the fact of world travel by a diverse population, and the 'honor system' Blood donor screening process, and too expensive testing, all contribute to the increase of transfusion transmitted Leishmaniasis. Lyme Disease - Lyme disease is associated with the bite of the eastern deer tick, and can cause an illness that affects many systems within the body. Donors with a history of Lyme disease can not donate Blood unless they no longer have symptoms whatever, have undergone a full course of antibiotic treatment, and are cleared by a physician. Public health and Blood agencies are closely monitoring this disease.

    Malaria - The popular statement, routinely given is that "malaria is rarely transmitted by Blood products." The number of transfusion associated cases of malaria, however, is at an all-time high. There are no practical laboratory tests available to test donor Blood, so donors travelling to high risk malaria areas are often deferred from donating Blood for six months. This policy, however, is not evenly applied in all areas and, believe it or not, depends on the honor system to work.

    Chagas Disease - Discovered a century ago by Brazilian doctor Carlos Chagas, this disease, properly named Chagas' Disease, is caused by a parasite that infects an estimated 18 million people worldwide, causing death from heart and digestive problems. Up to 20% of infected people never exhibit symptoms. Because of recent shifts in population, individuals from countries where this disease is common (South and Central America) are migrating in large numbers to the United States and other countries.Chagas' Disease - BloodBook Feature Special Fact Sheet

    Babesiosis - An intraerythrocytic parasitic infection caused from the bite of the infected Ixodes tick. The disease closely resembles in some ways Lyme Disease, and in other ways, malaria. This significantly affects the hematological system, causing among other things, hemolytic anemia, thrombocytopenia, and atypical lymphocyte formation. The transmitted parasite only infects red Blood cells by altering the cell membranes that causes decreased conformability and increased red cell adherence, which, in turn, can lead to development of acute respiratory distress syndrome (ARDS) among those severely affected. Babesia parasites invade and survive within erythrocytes. These Blood-borne parasites remain viable under Blood bank conditions. In Europe, Babesiosis is a life-threatening disease and is a significant public health problem in regions of the northeastern United States. Of patients with Babesiosis, 84% are asplenic, and 53% become comatose and die.

    Those individuals with a history of the disease are to be permanently deferred from donating Blood, if they know and admit before Blood donation that they have carried the malady. Toxoplasmosis - A systemic protozoan infection that causes symptoms similar to infectious mononucleosis. In immunocompromised individuals this infection can have serious neurological symptoms and can cause fetal death in pregnant women. Toxoplasmosis is also transmitted by common house cats. From AVMA - What You Should Know about Toxoplasmosis. Bacterial Contamination of Blood Products - This is another less often observed risk disorder directly associated with Blood transfusion. It is increasingly rare but a very serious complication of Blood transfusion. Most commonly associated with contamination during Blood collection or during handling of Blood products, such as preparation of platelet pools, and on occasion, associated with bacterial infection of the donor, it is sometimes recognizable by obvious changes in the appearance of the Blood product. Studies indicate that the rate of contamination of Blood products by bacterial pathogens may be significant.

    Since Blood recipient death continues to occur, in 1997, the CDC entered into an agreement with national Blood collection and distribution agencies to determine the frequency of transfusion reactions associated with bacterial contamination of Blood products. The new study will be a critical step in addressing this issue and will increase clinicians' awareness of bacterial contamination as a cause of transfusion reactions. Currently, the nation's Blood supply is not screened for bacterial contamination. Amazingly, when this contamination issue is raised, Blood donor deferral is merely recommended, and not mandatory



    Even if your illness isn't severe, please think carefully before donating blood. The following is an exerpt from a nursing website:

    How can I tell if something’s infectious?
    You can't! Many people that are infected with bloodborne pathogens don’t even know that they have an infection. Their blood and some body fluids (any human body fluid containing visible blood; semen; vaginal secretions; or fluids surrounding internal organs, the joints, or a fetus) are still infectious even if they don’t feel sick. One of the concepts that you will be taught in training is called “universal precautions”. Practicing universal precautions means that you treat all human blood and some body fluids as if they are contaminated with bloodborne pathogens.

  2. kaiasmom

    kaiasmom New Member

    I have always thought it would be a bad idea for me to donate blood personally, and now I know for sure!

    Thanks for the info.

    Leanne
  3. Shannonsparkles

    Shannonsparkles New Member

    Are there legitimate and effective ways to manage serious medical problems without using blood? Happily, the answer is yes.

    Though most surgeons have claimed that they gave blood only when absolutely necessary, after the AIDS epidemic arose their use of blood dropped rapidly. An editorial in Mayo Clinic Proceedings (September 1988) said that "one of the few benefits of the epidemic" was that it "resulted in various strategies on the part of patients and physicians to avoid blood transfusion."

    A blood-bank official explains: "What has changed is the intensity of the message, the receptivity of clinicians to the message (because of an increased perception of risks), and the demand for consideration of alternatives." —Transfusion Medicine Reviews, October 1989.

    Note, there are alternatives! This becomes understandable when we review why blood is transfused.The hemoglobin in the red cells carries oxygen needed for good health and life. So if a person has lost a lot of blood, it might seem logical just to replace it. Normally you have about 14 or 15 grams of hemoglobin in every 100 cubic centimeters of blood. (Another measure of the concentration is hematocrit, which is commonly about 45 percent.) The accepted "rule" was to transfuse a patient before surgery if his hemoglobin was below 10 (or 30 percent hematocrit).

    The Swiss journal Vox Sanguinis (March 1987) reported that "65% of [anesthesiologists] required patients to have a preoperative hemoglobin of 10 gm/dl for elective surgery."But at a 1988 conference on blood transfusion, Professor Howard L. Zauder asked, "How Did We Get a 'Magic Number'?" He stated clearly: "The etiology of the requirement that a patient have 10 grams of hemoglobin (Hgb) prior to receiving an anesthetic is cloaked in tradition, shrouded in obscurity, and unsubstantiated by clinical or experimental evidence."

    Imagine the many thousands of patients whose transfusions were triggered by an 'obscure, unsubstantiated' requirement!Some might wonder, 'Why is a hemoglobin level of 14 normal if you can get by on much less?' Well, you thus have considerable reserve oxygen-carrying capacity so that you are ready for exercise or heavy work.

    Studies of anemic patients even reveal that "it is difficult to detect a deficit in work capacity with hemoglobin concentrations as low as 7 g/dl. Others have found evidence of only moderately impaired function." —Contemporary Transfusion Practice, 1987.

    While adults accommodate a low hemoglobin level, what of children? Dr. James A. Stockman III says: "With few exceptions, infants born prematurely will experience a decline in hemoglobin in the first one to three months . . . The indications for transfusion in the nursery setting are not well defined. Indeed, many infants seem to tolerate remarkably low levels of hemoglobin concentration with no apparent clinical difficulties." —Pediatric Clinics of North America, February 1986.

    "Some authors have stated that hemoglobin values as low as 2 to 2.5 gm./100ml. may be acceptable. . . . A healthy person may tolerate a 50 percent loss of red blood cell mass and be almost entirely asymptomatic if blood loss occurs over a period of time." —Techniques of Blood Transfusion, 1982.

    Such information does not mean that nothing need be done when a person loses a lot of blood in an accident or during surgery. If the loss is rapid and great, a person's blood pressure drops, and he may go into shock. What is primarily needed is that the bleeding be stopped and the volume in his system be restored. That will serve to prevent shock and keep the remaining red cells and other components in circulation.Volume replacement can be accomplished without using whole blood or blood plasma.*

    Various nonblood fluids are effective volume expanders. The simplest is saline (salt) solution, which is both inexpensive and compatible with our blood. There are also fluids with special properties, such as dextran, Haemaccel, and lactated Ringer's solution. Hetastarch (HES) is a newer volume expander, and "it can be safely recommended for those [burn] patients who object to blood products." (Journal of Burn Care & Rehabilitation, January/February 1989)

    Such fluids have definite advantages. "Crystalloid solutions [such as normal saline and lactated Ringer's solution], Dextran and HES are relatively nontoxic and inexpensive, readily available, can be stored at room temperature, require no compatibility testing and are free of the risk of transfusion-transmitted disease." —Blood Transfusion Therapy —A Physician's Handbook, 1989.

    You may ask, though, 'Why do nonblood replacement fluids work well, since I need red cells to get oxygen throughout my body?' As mentioned, you have oxygen-carrying reserves. If you lose blood, marvelous compensatory mechanisms start up. Your heart pumps more blood with each beat. Since the lost blood was replaced with a suitable fluid, the now diluted blood flows more easily, even in the small vessels.

    As a result of chemical changes, more oxygen is released to the tissues. These adaptations are so effective that if only half of your red cells remain, oxygen delivery may be about 75 percent of normal. A patient at rest uses only 25 percent of the oxygen available in his blood. And most general anesthetics reduce the body's need for oxygen.

    HOW CAN DOCTORS HELP?

    Skilled physicians can help one who has lost blood and so has fewer red cells. Once volume is restored, doctors can administer oxygen at high concentration. This makes more of it available for the body and has often had remarkable results.

    British doctors used this with a woman who had lost so much blood that "her haemoglobin fell to 1.8 g/dlitre. She was successfully treated . . . [with] high inspired oxygen concentrations and transfusions of large volumes of gelatin solution [Haemaccel]." (Anaesthesia, January 1987) The report also says that others with acute blood loss have been successfully treated in hyperbaric oxygen chambers.

    The heart-lung machine has been a great help in heart surgery on patients who do not want blood
    Physicians can also help their patients to form more red cells. How? By giving them iron-containing preparations (into muscles or veins), which can aid the body in making red cells three to four times faster than normal. Recently another help has become available.

    Your kidneys produce a hormone called erythropoietin (EPO), which stimulates bone marrow to form red cells. Now synthetic (recombinant) EPO is available. Doctors may give this to some anemic patients, thus helping them to form replacement red cells very quickly.Even during surgery, skilled and conscientious surgeons and anesthesiologists can help by employing advanced blood-conservation methods.

    Meticulous operative technique, such as electrocautery to minimize bleeding, cannot be overstressed. Sometimes blood flowing into a wound can be aspirated, filtered, and directed back into circulation.#Patients on a heart-lung machine primed with a nonblood fluid may benefit from the resulting hemodilution, fewer red cells being lost.

    "Older concepts about oxygen transport to tissues, wound healing, and 'nutritional value' of blood are being abandoned... Severe anemia is well tolerated." —The Annals of Thoracic Surgery, March 1989.

    And there are other ways to help. Cooling a patient to lessen his oxygen needs during surgery. Hypotensive anesthesia. Therapy to improve coagulation. Desmopressin (DDAVP) to shorten bleeding time. Laser "scalpels." You will see the list grow as physicians and concerned patients seek to avoid blood transfusions.

    We hope that you never lose a great amount of blood. But if you did, it is very likely that skilled doctors could manage your care without using blood transfusions, which have so many risks.

  4. bunnyfluff

    bunnyfluff Member

    I think I got it from the blood I got!!! :(
  5. smiffy79

    smiffy79 New Member

    i thought it not wise for me to give blood due to the meds i take, surely they too will take an effect on the person?

    i pass out just for a blood test lol. i would hate to think i've started the ball rolling for someone to acquire this.
  6. Dolphin_lover

    Dolphin_lover New Member


    I have been told by more than one well-known prominent CFS doctors and researchers that we should not be giving blood.

    I have also been told not be be around babies under six months old, as their immune systems are not fully protecting them.

    Also, as an extra added precaution, I do not let anyone use my eating utensils, as in holding out your fork to let someone "taste" what you are enjoying. And vice versa - do not share anyone elses utensils in this way, or drink from the same cup, etc.

    There is too much we don't know, or are not told, about this DD. I would rather err on the side of caution (to protect someone else's health) than have to live with the thought that someone may have gotten this DD because of me.

    I would be interested to hear about other health precautions that PWC's take. Thanks for this post, it is extremely important for us and our families to know how and what we can do to protect other peoples' health.

    Dolphin
  7. day2day

    day2day Member

    Years ago when a friend of mine was dying of leukemia they had a bone marrow drive for her. Everyone signed up for it.

    I had totally forgotten I had done that it was so long ago.

    Last February I got a call saying I was a potential match for someone. Even with how sick I am, if I could save a life I would have done it in a heart beat.

    I had a screening call and much to my sadness because of having CFS we could not proceed.

    Funny thing is when my son was born, even though knowing I had CFS, they still took his cord blood. I found this strange that his cord blood was fine to take. I still wonder if pregnancy has some properties that is a key to CFS cure, not just the hormones but something else too. It was the one and only time I had relief of this DD since aquiring it. Unfortunately that went out the window after I had my son.


    day2day
  8. Shannonsparkles

    Shannonsparkles New Member

    I too don't share my eating utensils with anyone. When I got mono at age 13, I was told not to, as saliva can spread it - hence, the name "kissing disease." I wonder, as you do, what else we have in us that we can spread so simply through fluids.

    What really set it for me was a case in Dr. Cheney's book, "Osler's Web" about a musical group who nearly all got CFS about the same time as eachother, back when this was a newer disease. Dr. Cheney noted that they had all been sharing eating utensils.