Here is my reply to Twisted Jon's 4/2011 post, asking if Lymites may donate blood plasma. I do NOT think donating plasma is a good idea. Risks to the recipient may not be traced to the donor, but are viable.
From the WILEY Online Library: Lyme disease�another transfusion risk? S. K. Aoki�, P. V. Holland�Article first published online: 5 MAR 2003
"Lyme disease (or Lyme borreliosis) is caused by a spirochetal bacteria, Borrelia burgdorferi.
Increased recognition of the disease and increased exposure to the vector (ticks) capable of spreading B. burgdorferi from animal hosts have resulted in a rise in the number of cases of Lyme borreliosis reported in the United States.
There are three stages of the clinical course of Lyme borreliosis; however, not all those infected will have typical manifestations of each stage, such as the arthritis of the third stage. Routine blood cultures will rarely document bacteremia and serologic testing is not yet reliable.
Early treatment can prevent later stages of Lyme borreliosis. There is evidence that transmission of B. burgdorferi by blood transfusion is possible, but, to date, there has been no documentation of transfusion-associated Lyme borreliosis. Thus, no new recommendations for screening donors to identify possible carriers of B. burgdorferi are suggested at this time.
From TRANSFUSION (ABSTRACT) Volume 29, Issue 7, pages 646�650, September 1989 Survival of Borrelia burgdorferi in blood products (pages 581�583) S. J. Badon, R. D. Fister and R. G. Cable
Article first published online: 5 MAR 2003 | DOI: 10.1046/j.1537-2995.1989.29789369673.x
The incidence of Lyme disease is rapidly increasing in the United States. To assess the potential of transmission of the disease through blood transfusion, we studied the survival of Borrelia burgdorferi in blood products under blood bank storage conditions.
Two units of whole blood, separated into red cells (RBCs), fresh-frozen plasma (FFP), and platelet concentrates (PCs), were inoculated with B. burgdorferi (strain B31) in concentrations of approximately 3000 organisms per mL of RBCs and FFP and 200 organisms per mL of PCs. Products were then stored under blood banking conditions and sampled at several storage times.
The viability of the spirochete in blood components was determined by darkfield microscopic examination of cultures in modified Kelly's medium. The organism was shown to survive in RBCs (4� C) and FFP (below -18� C) for 45 days and in PCs (20�24� C) for 6 days.
The results of this study do not exclude the possibility of transmission of Lyme disease through blood transfusion.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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posted
Note the dates of these studies: 1989 and 2003.
Granted not much has changed in lymeworld since then.
But I'd hate to think that in 2011 people are hesitant to donate their organs.
When you are laying there in a hospital bed dying from liver/heart/kidney failure all you want is a functioning organ. It's TRULY a matter of life or death.
Who gives a $hit if the deceased person had LD or any other disease? If your heart/liver/kidney is functioning you are able to give life to someone.
You all who say you won't donate your organs because you don't want to put someone through the lyme hell you've been through is understandable.
You think you're doing the right thing.
But what you all don't understand is what life is like for those laying in a hospital bed dying a slow death. These people pray for an organ to save their lives knowing full well that means the death of someone else's loved one.
You aren't doing anyone a favor by opting out of donating your organs. Your organs and tissues are the GIFT of life, LD or not.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
You heard from a friend about studies from death from lyme after receipt of organs?
Have you heard about deaths b/c people did not receive transplants???
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
Well kudos to you for giving this issue a lot of thought.
As far as I'm concerned ALL your organs and tissue have the potential to save lives.
Thank you for thinking about this very serious issue.
And thanks in advance to anyone reading who decides to donate their organs.
Since you can't take them to heaven you might as well donate them.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Some really great info and links in this post.
Unfortunately if you give your lyme infested organ, they have no chance of getting a healthy organ and a likely chance of being infected with a very nasty organism.
Organ recepients take immune system suppressants so they don't reject the transplanted organ. I would guess this means that lyme is usually an issue whether it is known as the cause or not.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TerryK
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posted
Not only potentially fatal but one that causes horrific suffering. One that you would be totally unaware of as would your doctors.
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
You are making assumptions. Just as so many here do who think/feel/believe that they should not donate their organs and tissues. The thread you posted unfortunately has a lot of misinformation.
Your "lyme-infested" organ might not be an issue for an organ recipient, believe it or not.
Yes, absolutely organ recipients take immuno-suppressants. But they are weaned off these meds as soon as possible so that the doses are minimized.
You guessing that lyme is an issue in transplant recipients is neither here nor there.
Donate Donate Donate is all I can say.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Alana wrote: You guessing that lyme is an issue in transplant recipients is neither here nor there.
And you are guessing that it isn't.
Please be specific about what misinformation you are referring to.
Thanks, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Onbam I have very particular reasons for saying what I say. Kidney failure for instance sucks. And it's fatal.
Given the option of getting your lyme-infested functioning kidney vs. dying guess what 99.999% of those on the waiting list would chose?
Picture yourself hooked up to a dialysis machine for survival. Maybe you can't imagine that. Who could unless they've been there?
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
My husband and I took care of my father as he went through years of dialysis so I am well aware of exactly what that's all about.
My sister died last year after suffering horribly for 10+ years. Before lyme treatment I was so sick for years that I had wished I was dead and seriously thought about doing something to facilitate it.
Alana wrote: The thread you posted unfortunately has a lot of misinformation.
edited to add: Correct me if I'm wrong but I assume you mean the link that I posted has misinformation?
As requested previously, would you please let us know exactly what you believe is misinformation? The poster did a lot of research and posted very credible sources. I'm sure she would consider modifying her post if indeed there is misinformation in the thread.
If you do not respond, I'll assume you were mistaken about misinformation in the thread.
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I, for one, believe that I may have contracted lyme disease through one of the several transfusions I had 26 years ago. I would not risk giving this disease to anyone by donating blood or organs..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Actually it has been proven. By law most facilities will not accept blood from patients with tick-born infections, in-fact many state that if a patient has "Chronic symptoms" after Lyme Disease, they are not eligible. However, some have conditions regarding the duration of antibiotic therapy and the post-treatment period, upon which they may accept blood sometimes 6-12 or 24 months later. They are constantly changing their positions.
Even worse, if you ever had Babesia, they almost unconditionally will not accept your organs for donation, unless it is for research purposes.
Under no circumstances should any of us who are chronically sick with co-infections and Lyme Disease donate organs or donate blood. The risk to reward ratio does not support the recipients best interests given the available research.
Consider this, you are chronically sick, and many of you don't even know which co-infections or strains you have. Clinically many of you have been diagnosed, and some tested positive for some infections -- but what about the ones that are missed? We're staying sick for a reason, and it's a lack of knowing exactly what we're up against as a community.
If a recipient, say a family member, wants an organ, or you "need" to give it -- then that's a different story and if no other options are available, at least the person can use antibiotics post-surgery. They'll have an idea to "some" extent what some risks are. Even still, it's a dangerous issue.
Read this for further information:
Blood Donation Centers:
American Red Cross:
"Lyme disease - If this is a chronic condition you cannot donate. If you were treated with antibiotics and completely recovered, you can donate 12 months after the last dose of antiobiotics was taken." "Those who have had infections with Chagas Disease or Babesiosis are not eligible to donate." [LYMEINFO NOTE 2009: Their new website no longer contains the first part of this statement.]
UCSF Blood Center "Permanent Deferrals - The following conditions would permanently disqualify an individual as an allogenic or designated blood donor...Brucellosis/Babesiosis...Lyme Disease" [LYMEINFO NOTE 2009: Their new website no longer contains this statement.]
NY Blood Center (pdf file) "Lyme Disease - 1)If no signs of symptoms: Defer until treatment is completed. 2) If signs or symptoms: Defer for six months whether or not treatment was received".
Medical Literature:
Tick-Borne Disease Transmission by Blood Donation Prevalent in Endemic Areas "In a study presented here at the Infectious Diseases Society of America 43rd annual meeting, Megan Nguyen, BS, from the American Red Cross in Rockville, Maryland, presented data from a six-year study that showed the prevalence of B microti transmission via blood transfusion in areas where the tick is commonly found."
Transfusion-transmitted tick-borne infections: a cornucopia of threats "Despite the present unavailability of screening assays, some form of serologic and nucleic acid testing may be justified for the Babesia. Given that interactions between humans and ticks are likely to increase in the future, vigilance is required as new and extant tick-borne agents pose potential threats to transfusion safety."
Risk and prevention of transfusion-transmitted babesiosis and other tick-borne diseases. "The risk of transfusion-transmitted babesiosis is higher than usually appreciated and in endemic areas represents a major threat to the blood supply."
Tick-borne diseases in transfusion medicine "The transmission of tick-borne pathogens via blood transfusion is of global concern."
CDC- Blood Safety and Tick-Borne Illnesses "At least 21 reported cases of babesiosis, mostly caused by Babesia microti but also by the more recently recognized WA1-type Babesia parasite, have been transmitted by transfusion of blood from asymptomatic infected blood donors."
Transfer of Borrelia burgdorferi s.s. infection via blood transfusion in a murine model. "Our results indicate that it is possible to acquire B. burgdoferi infection via transfused blood in a mouse model of Lyme borreliosis."
Emerging infectious diseases that threaten the blood supply. "Many agents have fulfilled the broad definition of emerging blood-transmitted infections, including West Nile virus (WNV), Trypanosoma cruzi, Plasmodium spp., Babesia spp., parvovirus B19, dengue virus, and the prions that cause variant Creutzfeld-Jacob disease (vCJD). Other agents such as human herpes virus-8 (HHV-8-Kaposi's sarcoma virus) and Borellia (Lyme disease) and, perhaps, avian flu virus, are known to have a viremic phase, but have not yet been proved to be transfusion-transmitted."
Transfusion-Associated Babesiosis after Heart Transplant "Our experiences with this patient suggest that babesiosis should be considered in the differential diagnosis of transplant patients who have fever and hemolytic anemia."
Babesiosis acquired through blood transfusion, California, USA "Babesiosis was reported in a California resident who received a transfusion of blood products collected in the disease-endemic northeastern region of the United States. Babesiosis should be considered year-round in the diagnosis of febrile and afebrile patients with abnormal blood cell counts who have received blood products from disease-endemic areas."
Babesiosis and blood transfusion: flying under the radar "Despite the obvious public health issues posed by Babesia spp., options for preventing their transmission by blood transfusion remain limited. However, recognition that the Babesia spp. are indeed an ongoing and expanding blood safety threat will probably prove instrumental in the development of viable interventions to limit transmission of these agents."
Emergence of lyme arthritis after autologous chondrocyte transplantation "The possibility of a dormant borrelial infection should be considered in patients who undergo repair of cartilage defects with autologous chondrocyte transplantation."
Survival of Borrelia burgdorferi in blood products "The results of this study do not exclude the possibility of transmission of Lyme disease through blood transfusion."
Prevalence of Erythema migrans Borreliosis in blood donors "Though further research is required to document a transfusion-transmitted Borrelia infection, infected persons should be treated to avoid serious or late manifestations."
Survival of Borrelia burgdorferi in human blood stored under blood banking conditions "It is concluded that B. burgdorferi may survive storage under blood banking conditions and that transfusion-related Lyme disease is theoretically possible."
Borrelia burgdorferi: survival in experimentally infected human blood processed for transfusion "However, the possibility of survival of B. burgdorferi under blood banking conditions warrants a heightened awareness of this potential problem."
Current concepts on the transmission of bacteria and parasites by blood components "This review deals with the main bacterial (Syphilis, Lyme disease, Gram positive and Gram negative agents), parasite (Chagas disease, malaria, leishmaniasis, toxoplasmosis and babesiosis) and rickettsial diseases that are carried by blood products."
Babesiosis in a renal transplant recipient acquired through blood transfusion "Transplant patients may contract babesiosis after tick exposure and/or via blood transfusion. The diagnosis of babesiosis may be confused with malaria and should be included in the differential diagnosis of posttransplant hemolytic-uremic syndrome in organ transplant patients."
Retrospective study of a borreliosis infected blood donor "In a follow-up of 14 recipients of blood products donated by such a donor, no clinical signs or serologic evidence of a transfusion-transmitted borreliosis could be demonstrated."
Seroprevalence of Rickettsia spp. infection among tick-bitten patients and blood donors in Sweden. "The study shows that infection with Rickettsia spp. as well as coinfection with Lyme borreliosis needs to be considered in the diagnosis of tick-transmitted infections in Sweden."
Prevalence of Borrelia burgdorferi antibodies in Hamburg blood donors "Introduction of B. burgdorferi antibody screening is not regarded an effective means to prevent transfusion-transmitted Lyme disease."
Reference: Information source provided by Lymeinfo.net
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Clin Infect Dis. 2006 Jun 15;42(12):1751-4. Epub 2006 May 5.
Erythema migrans in solid-organ transplant recipients.
Maraspin V, Cimperman J, Lotric-Furlan S, Logar M, Ruzic-Sabljic E, Strle F.
Department of Infectious Diseases, University Medical Centre Ljubljana, Ljubljana, Slovenia.
Six adult solid-organ transplant recipients who had chronic drug-induced immunosuppression and who presented with solitary erythema migrans were treated with antibiotics administered at the same dosage and for the same duration used for the treatment of early, localized Lyme borreliosis in immunocompetent patients. The patients had a smooth course of illness and a favorable outcome but did not develop a measurable borrelial serum antibody response.
1: Transpl Infect Dis. 2007 Mar;9(1):66-72.
Lyme disease followed by human granulocytic anaplasmosis in a kidney transplant recipient.
Assi MA, Yao JD, Walker RC. Division of Infectious Diseases, Department of Internal Medicine, Mayo Clinic College of Medicine, Rochester, Minnesota, USA.
We report the case of a kidney transplant recipient who developed Lyme disease, followed by human granulocytic anaplasmosis (HGA) 3 years later. A review of all previously published cases of Lyme disease (3 cases), HGA (5 cases), and human monocytic ehrlichiosis (HME) (5 cases) in transplant recipients is presented. Manifestations of the cases reviewed were similar to those of non-transplant patients. There appeared to be no obvious correlation between immunosuppression and the occurrence of the illness in the transplant recipients. Serologic testing failed to make a diagnosis in 1 patient with HME in the literature and in our patient with HGA, but molecular tests established the diagnosis in both cases. Tandem infection was observed in 1 patient with two episodes of HME 2 years apart. A high index of suspicion for tick-borne illnesses and appropriate prevention measures are needed for transplant patients with epidemiologic risk factors.
Transpl Int. 2006 Aug;19(8):683-7. Disseminated Bartonella infection following liver transplantation. Bonatti H, Mendez J, Guerrero I, Krishna M, Ananda-Michel J, Yao J, Steers JL, Hellinger W, Dickson RC, Alvarez S. Source Transplant Center, Mayo Clinic, Jacksonville, FL, USA. Abstract Bartonella henselae has not only been identified as the causative agent of cat scratch disease, but it is also associated with other significant infectious syndromes in the immunocompromised population. We describe two cases of B. henselae associated diseases in liver transplant recipients who both had contact with cats. The first recipient developed localized skin manifestation of bacillary angiomatosis in association with granulomatous hepatitis. He tested positive for Immunoglobulin G (IgG) antibodies against B. henselae. The second patient developed axillary lymphadenopathy, with biopsy showing necrotizing granulomatous inflammation and polymerase chain reaction studies were positive for B. henselae DNA. Her serology for bartonellosis showed a fourfold rise in antibody titers during her hospitalization. Both patients responded to treatment with Azithromycin in combination with Doxycycline. These were the only cases within a series of 467 consecutive liver transplants performed in 402 patients performed during a 4-year period. Although bartonellosis is a rare infection in liver transplantation recipients, it should always be included in the differential diagnosis of patients presenting with fever, central nervous system (CNS) symptoms, skin lesions, lymphadenopathy, and hepatitis especially if prior contact with cats is reported. Transplant recipient: her cardiomyopathy caused by a bout with Lyme disease during the mid-1990s ________________________________________ http://www.news-journalonline.com/Ne...AD04120606.htm
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December 06, 2006
Transplant gives 44-year-old mom 'another chance at life'
By SANDRA FREDERICK Staff Writer
JACKSONVILLE -- Branding her youngest son's face into her memory was the only thing Jackie Rouse could think about as a vise-like pressure gripped her chest.
It was the Friday night before Thanksgiving and she knew something was terribly wrong. She would lie in bed only to be forced to stand up to ease the sharp pains that assaulted her. But she was so weak she couldn't remain standing for more than a few moments before she would lie down again, only to repeat the process.
"Something told me I had to remember his little face because I wasn't ever going to see it again," Rouse said Friday as tears streamed down her frail face, four days after undergoing a heart transplant at Mayo Clinic at St. Luke's Hospital in Jacksonville. "I knew I was knocking on death's door at that moment."
Rouse is expected to be released from the transplant center today pending results of a biopsy, where five pinhead-sized snippets of heart tissue were extracted through a tube woven to the organ through a vein in her neck.
If results show none of the heart tissue is dying, she will settle into a private rehabilitation center near the hospital where she will have to get the same procedure performed weekly for several months. The tests will tell her doctor if her body is rejecting the new heart. Rouse also will have to take about $6,000 a month in medications to suppress her immune system so her body won't attack the new organ.
The 44-year-old single mother from New Smyrna Beach is still amazed just how close she came to dying. A week before she was told she had cardiomyopathy -- severe scarring around the heart caused by a bout with Lyme disease during the mid-1990s -- and needed a pacemaker. She was no longer pumping blood and oxygen through her body efficiently.
But what the doctors didn't know was only about 20 percent of her heart was actually working.
"Her blood pressure was really low when she came in," Bert Fish Medical Center cardiologist Dr. Eric Lo said. "Her heart failed suddenly and she couldn't maintain blood pressure. If she hadn't come in when she did, she would have died."
However, the medicine Lo put her on was dangerously strong and could only be taken for a few weeks. The only option was to get her a transplant or get her to Hospice to help her during her final weeks of life.
Thankfully, Rouse had some "miracles" on her side, too. Her other vital organs were still in good shape and hadn't started to shut down. And, Dr. Jeffrey Hosenpud, a cardiologist with Mayo Clinic, said because of her small stature, age and blood type, she was a good candidate for a new heart. She was placed at the top of the transplant list instead of having a Jarvik -- a mechanical heart surgically installed to keep her alive.
The call came only 10 days after her lifesaving trip to Bert Fish in New Smyrna Beach -- a donor heart from Kentucky was available.
"I went from getting a pacemaker to needing a new heart," Rouse said. "It's amazing to feel and hear my new heart pumping. And, for the first time in a long time, my hands and toes are warm."
The nearly seven-hour surgery went well, said transplant surgeon Dr. Laurence McBride, who also harvested the donor heart before transplanting it into Rouse.
"It is very gratifying to take people (like Jackie) with no hope or future and transplant an organ and allow them to live," he said Friday from the hospital.
Rouse, who was going to marry her fiance, Scott Phillips, last week, is thankful for the support of her loved ones, doctors and the hospital. She said she didn't lose 80 percent of her original heart overnight, but she did get a "miracle" in 10 days.
"I am going to take the very best care of this heart," she said as she placed her hand over the middle of her chest. "The decision by the (donor) family allowed me to be here and see my kids grow. I have another chance at life." [email protected]
Friday, March 19, 2010 Grand Hall (Hyatt Regency Atlanta) Meghan B. Brennan, MD , University of Wisconsin School of Medicine and Public Health, Madison, WI Christina L. Klein, MD , Washington University, St Louis, MO Debra M. Thompson, MD , Affiliated Infectious Disease Consultants, Milwaukee, WI James J. Kazmierczak, DVM, MS , Wisconsin Department of Health Services, Madison, WI Rong He, MD , University of Wisconsin School of Medicine and Public Health, Madison, WI Catherine Leith, MD , University of Wisconsin School of Medicine and Public Health, Madison, WI Matthew Oberley, MD, PhD , University of Wisconsin School of Medicine and Public Health, Madison, WI Mitchell D. Wolf, MD , University of Wisconsin School of Medicine and Public Health, Madison, WI Patricia P. Wilkins, PhD , CDC, Division of Parasitic Diseases, Atlanta, GA Barbara L. Herwaldt, MD, MPH , CDC, Division of Parasitic Diseases, Atlanta, GA Gregory M. Gauthier, MD , University of Wisconsin School of Medicine and Public Health, Madison, WI Background: Babesia microti, an intraerythrocytic parasite, is the most common cause of babesiosis in the United States and is endemic in parts of the Northeast and upper Midwest. This zoonotic pathogen is usually acquired through the bite of an Ixodes scapularis tick; however, transmission by blood transfusion has been reported. Objective: We describe two cases of laboratory-confirmed babesiosis in which transmission of B. microti likely occurred at the time of kidney transplantation. To our knowledge, transmission of Babesia by (or during) transplantation has not been reported. Methods: Evaluations for Babesia infection included blood-smear examination, immunofluorescent antibody (IFA) testing of serum/plasma for B. microti antibodies, and polymerase chain reaction (PCR) analysis of blood for B. microti DNA. Results: In late October 2008, two transplant recipients developed hemolytic anemia within eight weeks of receiving cadaveric renal allografts from the same donor. The index case-patient was diagnosed with babesiosis (8% parasitemia) by manual review of a peripheral blood smear during an inpatient evaluation for pancytopenia. The recipient of the other kidney was identified and also found to have babesiosis (1% parasitemia). For both patients, PCR and IFA testing of post-transplant specimens documented that the etiologic agent was B. microti; no B. microti antibodies were detected in archived pretransplant specimens. Neither patient had risk factors for tick exposure or received blood products in the peritransplant period. Both patients were treated for six weeks with atovaquone and azithromycin, which resulted in the resolution of symptoms, hemolytic anemia, and parasitemia. Ten months after completion of therapy, they remain asymptomatic. Conclusions: These two cases highlight the potential for transmission of B. microti at the time of organ transplantation. The diagnosis of babesiosis should be considered in patients who develop unexplained hemolytic anemia after solid organ transplantation.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I'm surprised you're using the very faulty studies to support organ transplantation as those which deny the existence of chronic Lyme Disease and Babesiosis infection. Those studies cite these conditions as being easily treatable, and mundane nuisance even with a brief course of antibiotics(antiparasitics).
Clearly we've proven those studies are wrong and that people here at Lymenet often remain infected just by our own experiences here.
We've had hundreds of people test positive long after treatment for Babesia, Lyme Disease and other co-infections. These same people remain symptomatic with the same symptoms typical of these infectious diseases that these studies claim are a non issue. Even after years of antibiotics, many remain sick. By my observations, something is a-miss
Clearly you have a personal affinity to the subject otherwise you would not feel so strongly -- at least that's what I assume, and if that is the case, I really do understand the desire to want to help people and save lives. I just need to make sure you and I are very clear here about the probabilities of the chronically sick population here at Lymenet donating blood or organs. It is true that perhaps some lives may be saved, but the anonymity of donation of blood products, and the lack of understanding of chronic persistent tick born infection does not bode well for the quality of life of the person who does survive. I suppose if the person is warned in advance by the donor of their suffering from a debilitating chronic disease that may be passed along should the organ be accepted, then that's their prerogative. Yet, how many doctors except our LLMD's really can be qualified to make that determination? They're the ones seeing sick patients whom some of which can be identified as having gotten Lyme Disease or co-infections from transplants.
Ask your own LLMD what they think.
Almost every LLMD I've spoken to or heard speak has made it clear that donation of any kind is unwise.
If you still feel that under emergency conditions extending someone's life with donated products of patients here at Lymenet is reasonable, even with the risks I've laid out -- then I can respect that.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
My husband is alive today because he got a blood transfusion (a major one). His blood was at such levels, very suddenly, that he would not have survived the ER had he not gotten an immediate transfusion.
Consulting with Dr. K. in the ER he suggested that since we know that my husband has a few very silent bugs (Babesia), but would not be able to live without a transfusion, we will manage that too. Watch out for Anemia! Of course, the hospital has no clue about Babesia nor the cause of this anemia.
All I can say, I hope, and I am asking for prayers and thank you.
Take care.
Neil, I know I have your e-mail from earlier correspondence, but can't find it. Would you please mail me - I know you have mine. I want to contact Chris H. and lost his e-mail too - I recently corresponded with him (after his move). If you could, please.
Posts: 9834 | From Washington State | Registered: Oct 2000
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MB, I'm not using any studies in particular. Like I said, it was a quick google.
And guess what--for some people babs IS a mundane treatable infection.
You don't need to preach to the choir. I'm all too familiar with LD/cos. But just b/c many here are sick doesn't preclude them from organ donation.
You said:
"Clearly we've proven those studies are wrong and that people here at Lymenet often remain infected just by our own experiences here.
We've had hundreds of people test positive long after treatment for Babesia, Lyme Disease and other co-infections. These same people remain symptomatic with the same symptoms typical of these infectious diseases that these studies claim are a non issue. Even after years of antibiotics, many remain sick. By my observations, something is a-miss"
I don't disagree. But then again I could call you out on your statements like "we've proven" and "we've had hundreds of people"
Have you visited any patients who are waiting for organs?
Oh yes you are absolutely correct. I most definitely have a "personal affinity" to the subject.
I am glad that you understand the desire I have to help people and save lives.
You and I are very clear.
I am familiar with the sick population here at lymenet. You say "It is true that perhaps some lives may be saved..." and in the transplant world that is golden.
Your "but" the anonymity of donation of blood products, and the lack of understanding of chronic persistent tick born infection does not bode well for the quality of life of the person who does survive. Guess what? Without that organ the person doesn't have a shot at survival.
You say "I suppose if the person is warned in advance by the donor of their suffering from a debilitating chronic disease that may be passed along should the organ be accepted, then that's their prerogative."
Usually the donor is dead and the family is mourning the untimely passing. The family is generous and gracious enough to decide to donate their loved one's organs so that others can live.
SO THAT OTHERS CAN LIVE! LIVE being the key word.
Hey, you all in heart/liver/kidney failure: Raise your hand if you'd decline an organ from someonw sick with TBD.
You ask how docs are qualified to make the determination. You mention LLMDs. But really it's about transplant surgeons and cardiologists and nephrologists and hematologists.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Saying prayers for you and your husband GIGI!
Alana - I agree with Mike.
I can see your point of view. I know you want to help those in need of an organ but in my opinion Lyme is impossible to cure with current knowledge and I'm not alone in that opinion. This is one reason why I believe that anyone with lyme will transfer infection to the organ recipient.
The only hope a transplant patient would have is if they have a strong immune system and taking immune suppression drugs will make that near to impossible.
Alana wrote: You ask how docs are qualified to make the determination. You mention LLMDs. But really it's about transplant surgeons and cardiologists and nephrologists and hematologists.
Exactly! The majority of transplant surgeons, cardiologists, nephrologists and hematologists know nothing about lyme/co-infections or the ramifications of being infected.
Alana wrote: Hey, you all in heart/liver/kidney failure: Raise your hand if you'd decline an organ from someonw sick with TBD.
I called my brother and asked him your question because he is in both liver and kidney failure. He is also sick like I have been with TBI and has been for a number of years. He stated flat out that he would not accept an infected organ knowing what he knows now. I feel the same way.
Quantity of life means nothing when you are deathly ill and can barely get out of bed. Time drags on and the pain is unbearable. You wish it would end but it doesn't. This is precisely why some people sign a DNR (do not resuscitate) order.
That said, as a recipient, if I *knew* that I might get sick and how to deal with it I might make a different decision but unfortunately that is not part of the equation at this time.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I've provided some very serious & realistic options for people on this board who may want to donate organs to living recipients, even if annoymous, some of my solutions may bypass concerns of donating, so please consider it seriously and rethink your position.
quote:Originally posted by AlanaSuzanne: I don't disagree. But then again I could call you out on your statements like "we've proven" and "we've had hundreds of people"
Have you visited any patients who are waiting for organs?
Absolutely. My best friend Mel lost her Kidneys at age 16 to a typical infection: Streptococcal pharyngitis. She received a kidney only recently after waiting quite awhile. Now that she has, she was doing very well for awhile but after a few years she feels sick all the time, even though the kidney is working fine. Her sickness has nothing to do with TBI probably, but I've asked her if she would ever accept a kidney from me (when they were trying to find one), and she said and I quote "Mike that is truly the kindest thing anyone has ever offered, but there is no way in hell I would accept anything from you. You're so sick you don't even have a life -- not a real life. What if I get sick too?" I told her "Well if you don't get any organs you may die soon. She said "And if I got one from you, I may as well be, because you've spent years telling me you'd rather be dead." I told her "But I got better!" And she said "Do you leave home? No." Touche.
So I hope that answers your question. I'm sure there are other people in acute situations who would beg for anything, and I would give anything if asked by someone I love but with conditions about consulting an LLMD afterwards.
quote: Oh yes you are absolutely correct. I most definitely have a "personal affinity" to the subject.
I am glad that you understand the desire I have to help people and save lives.
You and I are very clear.
I figured as much. I understand where you are coming from. I think you'd have to have gone through what you've seen or experienced to feel despair, or the fear of losing a life, especially someone you love.
quote: I am familiar with the sick population here at lymenet. You say "It is true that perhaps some lives may be saved..." and in the transplant world that is golden.
Your "but" the anonymity of donation of blood products, and the lack of understanding of chronic persistent tick born infection does not bode well for the quality of life of the person who does survive. Guess what? Without that organ the person doesn't have a shot at survival.
You're right, they would die.
quote: Usually the donor is dead and the family is mourning the untimely passing. The family is generous and gracious enough to decide to donate their loved one's organs so that others can live.
Yes, I am aware of this, and that's why I was very limiting in my justification for donation. Only under very rigid circumstances would I be willing, which I think is better than nothing considering most here have said "no period." I think you'd agree.
quote: SO THAT OTHERS CAN LIVE! LIVE being the key word.
quote: Hey, you all in heart/liver/kidney failure: Raise your hand if you'd decline an organ from someonw sick with TBD.
I don't know what my emotional decision would be in the face of death. Maybe I'd change my mind, but logically -- in the present moment -- I would choose death. That's assuming though that I knew the organ was infected and that it was likely to pass on the infection, but the reality is, I wouldn't know -- so I would accept any random organ, and sure enough any random organ can have plenty of other infectious diseases present or other ill conditions that "can" be passed if the donor was undiagnosed. It's a risk I'd take, so... I just couldn't do it with my own disease. Knowing. I will make an exception though since I think what you're saying can be sensible under this warning.
Anyone who wants to donate like Suzanna states, please write up a note to put in your wallet so the EMT's can access your little index card as well as your Driving ID with the "heart" on it. This at least gives people a chance! Or please speak directly to family members that should the organ be donated the recipient must know to persue treatment following the donation, and some information about treatment and the disease should be provided. as well as how to find a physician.
This can all be done right now after reading this. So under that condition, I believe people can make an "informed" decision, or at least the family can if the recipient is unconscious.
quote: You ask how docs are qualified to make the determination. You mention LLMDs. But really it's about transplant surgeons and cardiologists and nephrologists and hematologists. [/QB]
You're right about how the transplant is performed, but being literate in the nature of our condition would certainly help in making the determination of whether the organ and patients quality of life would be satisfactory. They'd make a risk to benefit ratio and I do believe, believe it or not -- that if the patient could not wait, they'd probably figure the patient could be treated as though the organ were infected, even if it wasn't and get the transplant.
So, I think everyone should consider my point of view and Suzanne. Perhaps we can come up with a good idea that saves lives while minimizing as much risk as possible and providing informed decision making into the process.
How does that sound to you Suzanne? By the way, if I sounded like I was patronizing you at any point, I absolutely would never do that, but if you felt it, still, I apologize. I take discussions here at Lymenet very seriously and never ever would belittle any opinion. I take our discussions like a "business persona" -- It's just too important for egoism. So, my apology in advance.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
GiGi, prayers to you and your hubby. If the anemia continues, ask the docs about epogen as an alternative to transfusions.
Terry and MB, I am very moved by your personal stories. You both obviously are as passionate about this subject as I am.
Terry, your brother's response was interesting. I think that if someone is younger and "healthier" (relatively speaking) the answer might be different. I will keep him in my prayers as he (and you) are surely going through a hell that no one should have to endure.
The drugs used for transplant do suppress your immune system. However, the doses are adjusted downwards as soon as is practical. There are patients who are even weaned off immunosuppressants entirely.
And not every aspect of the immune system is suppressed. I am not technically savvy in that regard but that is what I have been told by those who know.
I don't know if I agree that Lyme is impossible to cure. I hope that isn't the case. I agree that TBI can be transmitted via organ donation. The literature supports that. But there is also literature that states the infections can be treated successfully.
No doubt that the vast majority of docs are not educated about LD/cos. But remember that the docs who care for transplant patients are a different breed, including the ID docs who care for them.
The second a transplant patient has a fever or any other unusual symptom, those docs are on it like white on rice. And abx and antivirals are used aggressively from the get-go.
I agree with you about the quality of life. But that's one of my points about transplant. So many are deathly ill and unable to get out of bed. And they have no chance of doing so unless they get an organ.
In your brother's situation, he's had a triple whammy: TBI, liver and kidney failure. Good God, how much should one person have to go through? I can certainly understand his decision.
I don't think any one of us knows what we'd do unless/until we were in a particular situation. And in the case of a potential recipient, the patient's doc is called and consulted with first. The potential recipient does not make these decisions him/herself.
MB, I am sorry to hear that your friend isn't feeling well. I hope she gets better soon. She sounds like quite the firecracker!
None of us *know* for sure what we'd do in a situation unless/until we are there. It's the unknown. Organs are screened and rejected for all sorts of conditions (including TBI).
And as we know part of the problem is the testing for TBI is far from accurate. And even if the testing was perfect for TBI, there are a hundred other diseases that could be living in that organ and theoretically passed on to the recipient.
But the question begs to be answered, does an organ infected with as-yet undetectable pathogens automatically mean that a recipient will become ill? I'm not so sure. Any transplant or blood transfusion is risky. But so is crossing the street.
MB, being literate in TBI would certainly be a bonus for any/all docs.
But remember that you could have a 6-antigen match between related people who are both healthy (obviously someone in organ failure isn't healthy, so what I mean by that is there are no other complicating diseases like diabetes for example). And, yet, you could still lose the transplant eventhough all the odds were in your favor. Sometimes it's the luck of the draw.
MB, your suggestion is excellent!! Thank you so much for that. I hope that people reading this do as you suggest.
And PS, no you didn't sound patronizing at all so no need for apologies. I on the other hand think I've been a bit arrogant on this topic as it is very close to my heart. I did not realize it is close to others' hearts as well, so I apologize.
I hope that the powers-that-be in the medical profession are having the kind of dialogue we have here.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Good posts Alana and Mike.
Mike - so sorry to hear about your friend. I hope she starts to feel better soon.
I should clarify - what I mean by cure is complete annihilation of the organism. I think lyme is impossible to cure with todays knowledge but I do think that someday that will be different.
I do know that some of us are prone to chronic lyme and others are not. I have all the genetic markers for someone who will have difficulty. According to my doctor, there are some who are infected who are asymptomatic so it's *possible* that a person could get an infected organ, acquire the infection systemically and not show symptoms until later in life when the immune system doesn't work as well. Maybe some people never get sick later in life even though they are infected. The research on that has never been done.
Yes, a younger person might make a different decision. Say somone in their 20's or 30's as opposed to my brother and I who are in our early 50's.
There is a possibility of a person passing lyme congentially and/or sexually so that is another consideration for the person accepting an infected organ.
It's hard for anyone to fatham just how sick one can get from lyme. Being infected with undiagnosed/untreated lyme for 5 decades has given me the "benefit" of knowing. If I didn't know, I've no doubt that I'd feel differently.
This has been a good discussion.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Yes indeed Terry. This has been a very good discussion.
Sorry that you have the genetic markers. One of my kids has the markers for mold susceptibility which I believe has hampered her recovery.
I do believe that someone could get a "sick" organ and not actually get sick. Like you said, the research on that has never been done.
And you bring up a valid point. There is definitely the possibility of a person passing lyme congenitally and/or sexually.
But that's not a transplant issue per se. And transplant recipients aren't necessarily privvy to the info that we all share on lymenet.
That person waiting for an organ likely has no idea of our discussions/debates here.
I wholeheartedly agree with you. It's hard to fathom how sick one can get from Lyme. And I'm sure you'd agree it's just as hard to fathom how sick one can get from organ failure.
You've been around the block a few times to say the least.
I send my best to you and your brother.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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