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» LymeNet Flash » Questions and Discussion » Medical Questions » Thinking of being a Blood or Organ Donor...

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Author Topic: Thinking of being a Blood or Organ Donor...
Melanie Reber
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THINK again...


Detection of Borrelia burgdorferi in Host Tissues & Fluids

Bladder
Blood
Bone
Brain
Breast milk
Cerebrospinal fluid (CSF)
Ear
Eye
Heart
Kidney
Ligament
Liver
Lung
Lymph nodes
Muscle
Nerve
Ovary/Testis
Plasma
Skin
Spinal cord
Spleen
Synovial (joint) fluid
Synovial (joint) membrane
Urine
Uterus
http://www.lymeinfo.net/LDSymptoms.pdf

[ 02-02-2009, 05:53 PM: Message edited by: Melanie Reber ]

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Melanie Reber
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Curr Opin Hematol. 2003 Nov;10(6):405-11.

Risk and prevention of transfusion-transmitted babesiosis and other tick-borne diseases.
Cable RG, Leiby DA.
American Red Cross, Connecticut Blood Services, Farmington, and University of Connecticut Health Center, Farmington, Connecticut 06032, USA. [email protected]


PURPOSE OF REVIEW: Tick-borne diseases have increasingly been recognized in the United States as public health problems.

The importance of tick-borne diseases has been accelerated by increases in animal populations, as well as increased human recreation in wooded environments that are conducive to tick bites.

Babesiosis, usually caused by the intraerythrocytic parasite, Babesia microti and transmitted by the same tick as Lyme disease, has important transfusion implications.

Although Lyme disease has not been reported from blood transfusion, newly identified tick-borne diseases such as ehrlichiosis raise additional questions about the role of the tick in transfusion-transmitted diseases.

RECENT FINDINGS: The risk of transfusion-transmitted babesiosis is higher than usually appreciated and in endemic areas represents a major threat to the blood supply.

Furthermore, the geographic range of B. microti is expanding, other Babesia spp. have been implicated in transfusion transmission in the western United States, and the movement of blood donors and donated blood components may result in the appearance of transfusion babesiosis in areas less familiar with these parasites.

Consequently, a higher degree of clinical suspicion will allow early recognition and treatment of this important transfusion complication.

SUMMARY: In endemic areas transfusion-transmitted babesiosis is more prevalent than usually believed. The extension of the geographic range of various Babesia spp. and the movement of donors and blood products around the United States has resulted in the risk extending to non-endemic areas.

Clinicians should maintain a high degree of clinical suspicion for transfusion-transmitted babesiosis.

PMID: 14564169 [PubMed - in process]

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C O L O R A D O * S U P P O R T * S Y S T E M
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lifewithlyme
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that's a really good compilation of lyme stuff, Melanie..I'm finally printing it out. Thanks!
Sarah

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Melanie Reber
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Detection of Borrelia burgdorferi Antigen in Urine from Patients with Lyme Borreliosis:
http://www.igenex.com/luatart.htm

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


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Melanie Reber
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``Viable spirochetes were recovered from RBCs inoculated with 10(6) organisms per mL, after
refrigeration for as long as 6 weeks.

It is concluded that B. burgdorferi may survive storage under blood
banking conditions and that transfusion-related Lyme disease is theoretically possible.''

Survival of Borrelia burgdorferi in human blood stored under blood banking conditions.

Nadelman RB; Sherer C; Mack L; Pavia CS; Wormser GP Transfusion, 30(4):298-301. 1990. http://www.lymeinfo.net/LDSupplement.pdf

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C O L O R A D O * S U P P O R T * S Y S T E M
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HaplyCarlessdave
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They didn't want my blood even though I seem to have recovered, because I had had babesiosis.
DS

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Melanie Reber
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Lyme disease "would permanently disqualify an individual as a... blood donor"

UCSF Blood Centers, Donation Guidelines http://pangloss.ucsfmedicalcenter.org/bloodcenters/bcdonationpage.htm

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C O L O R A D O * S U P P O R T * S Y S T E M
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[This message has been edited by Melanie Reber (edited 18 December 2003).]


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Melanie Reber
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Tick-Borne Agents and Transfusion Risk
http://www.cdc.gov/ncidod/eid/vol4no3/chambrln.htm

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C O L O R A D O * S U P P O R T * S Y S T E M
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Beverly
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I am printing it out also, thanks Melanie.


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Melanie Reber
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Because this topic just (don) surfaced again...I am linking it to the newest discussion:

http://flash.lymenet.org/ubb/Forum1/HTML/023490.html

Thanks everyone! (and you are certainly welcome too )

Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
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[This message has been edited by Melanie Reber (edited 01 March 2004).]


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Lymetoo
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And just think about how many undiagnosed people are giving blood as we speak.

I donated blood once about 20 yrs ago. They damaged a nerve in my arm, so I never donated again! Thank goodness, because otherwise I would have given Lyme and babesiosis to more people!

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oops!
Lymetutu


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Rita
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When I had "fibromyalgia", I gave about a gallon and a half over the years. I've read about patients getting MS from transfusions.
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Melanie Reber
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Related new discussion: http://flash.lymenet.org/ubb/Forum1/HTML/026136.html

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


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Melanie Reber
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Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections
http://www.ktvu.com/video/3547022/detail.html

(thanks Kerry )

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C O L O R A D O * S U P P O R T * S Y S T E M
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cbb
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Melanie, thanks for sharing this video.

Excellent info!!


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Melanie Reber
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Transfus Med Rev. 2004 Oct;18(4):293-306.

Transfusion-transmitted tick-borne infections: a cornucopia of threats.

Leiby DA, Gill JE.

Department of Transmissible Diseases, American Red Cross Holland Laboratory, Rockville, MD 20855, USA. [email protected]

Over the past several decades, the frequency of contact between humans and ticks has increased dramatically. Concomitantly, several newly recognized tick-borne pathogens have emerged joining those already known to be transmitted by ticks. Together these factors have led to an enhanced public health awareness of ticks, tick-borne agents, and their associated diseases.

Reports that several of these agents are transmitted by blood transfusion have raised concerns about blood safety. The primary agents of interest are members of the genus Babesia, but Anaplasma phagocytophilum, Rickettsia rickettsii, Colorado tick fever virus, and tick-borne encephalitis virus also have been transmitted by transfusion.

In many cases, these agents and their diseases share common features including vectors, symptoms, and diagnosis. Unfortunately, they also share the common problem of insufficient epidemiologic and transmissibility data necessary for making informed decisions regarding potential blood safety interventions.

Although further surveillance and epidemiologic studies of tick-borne agents are clearly needed, at present only the Babesia warrant consideration for active intervention; because donor management strategies based on risk-factor questions are inadequate, leukoreduction not effective for agents found in red cells and pathogen inactivation remains problematic for red cell products.

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.

PMID: 15497129 [PubMed - in process]

(thanks lou)

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C O L O R A D O * S U P P O R T * S Y S T E M
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bg
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Also, NOT being a tissue or bone marrow donor!

Here is more informative info from me & others on MP board; please read.
http://www.marshallprotocol.com/forum27/1153.html

Betty G., Iowa


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Melanie Reber
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http://www.cdc.gov/ncidod/EID/vol9no1/02-0149.htm

Transfusion-Associated Babesiosis after Heart Transplant

``More than 40 cases of transfusion-transmitted B. microti infection have been reported in the United States''

(thanks Toots )

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C O L O R A D O * S U P P O R T * S Y S T E M
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keylyme
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How Ironic, we can't be treated because we don't have it, but don't dare give blood.

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Melanie Reber
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Neonatal babesiosis: case report and review of the literature.

Fox LM, Wingerter S, Ahmed A, Arnold A, Chou J, Rhein L,
Levy O.

Division of Infectious Diseases, Children's Hospital
Boston, Harvard Medical School, Boston, MA.
[email protected]

A case of transfusion-associated neonatal babesiosis is presented. Jaundice, hepatosplenomegaly, anemia and conjugated hyperbilirubinemia developed in this preterm
infant. The diagnosis was eventually made by blood smear, serology and polymerase chain reaction. The patient was treated with clindamycin and quinine and made a favorable
recovery.

Of neonatal babesiosis reported in the
literature, 9 other cases are reviewed, including 6 that were transfusion-associated, 2 congenital and 2 tick transmitted.


PMID: 16462298 [PubMed - as supplied by publisher]

(thanks Miss Cave [Smile] )

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treepatrol
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up

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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Jellybelly
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My daughter gave birth, if you could call it that to a 26 1/2 week preemie weighing 1 lb 15 oz. It is very important that they get breast milk and so my daughter pumped night and day to feed her little girl. She produced so much milk that she could have feed 20 babies and the nurses were constantly asking her to donate the excess. She refused, even though they just trashed literally gallons of milk.

At the time, we didn't know Lyme was the problem. We were sick, that we knew. Thankfully she didn't contribute the milk and worrying about how many little ones would become sick from the contaminated milk isn't something that she will have to worry about now that we know it is Lyme and whatevr else. Worrying about her own girls is hard enough.

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Melanie Reber
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http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

J Parasitol. 2006 Aug;92(4):869-70.

Transfer of Borrelia burgdorferi s.s. infection via blood transfusion in a murine model.

* Gabitzsch ES,
* Piesman J,
* Dolan MC,
* Sykes CM,
* Zeidner NS.

Centers for Disease Control and Prevention, Division of Vector-Borne Infectious Diseases, Bacterial Zoonoses Branch, Foothills Campus, Fort Collins, Colorado 80522, USA.

Without antibiotic treatment, the Lyme-disease-causing bacterium, Borrelia burgdorferi can be cultured from the peripheral blood of human patients nearly 6 wk post-tick bite.

To determine if Lyme disease spirochetes can be transmitted from a spirochetemic donor mouse to a naive recipient during blood transfusion, blood taken from immunocompetent infected mice was transfused into either immunodeficient
(SCID) mice, inbred immunocompetent animals (C3H/HeJ), or outbred mice.

Nine of 19 (47.7%) immunodeficient mice, 7 of 15 (46.8%) inbred immunocompetent mice, and 6 of 10 (60.0%) outbred mice became infected with B. burgdorferi after transfusion.

Our results indicate that it is possible to acquire B. burgdoferi infection via transfused blood in a mouse model of Lyme borreliosis.

PMID: 16995409 [PubMed - indexed for MEDLINE]


(thanks Cave [Smile] )

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Melanie Reber
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Colorado Tick Fever
http://www.emedicine.com/emerg/topic586.htm

Symptoms begin roughly 4-5 days after the tick bite, although incubation periods of as long as 20 days are reported. For the first 2 weeks of disease, free virus can be isolated from the blood. This is followed by a period during which the virus circulates inside of erythropoietic cells. The virus can live in the red blood cells for the life of the cell, which is roughly 120 days. For this reason, blood donation is prohibited in patients for 6 months following infection.

Cases with prominent hepatic or CNS manifestations have been reported. Transfusion-associated cases from viremic patients have occurred.

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micul
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Now wait a minute here! Why don't we give our organs and blood to those professionals that believe that there is no chronic Lyme Disease! According to these designated recipients, Lyme is gone after 28 days of Tx, So they shouldn't be in any danger from those of us that have already had long term abx Tx right?

Here's a partial list of people that could take our organs:

The IDSA

Gary P. Wormser

Raymond J. Dattwyler

Eugene D. Shapiro

John J. Halperin

Allen C. Steere

Mark S. Klempner

Peter J. Krause

Johan S. Bakken

Franc Strle

Gerold Stanek

Linda Bockenstedt

Durland Fish

J. Stephen Dumler

Robert B. Nadelman

--------------------
You're only a failure when you stop trying.

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2mag
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okay


so what if every lyme victem contacted the CDC and told them that they are going to donate blood ( of course do not donate- for the sake of your fellow man-)flood them with calls and emails

would it cause some commotion and bring it to the news ???????

2mag

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Cobweb
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I have been permantently black balled by Red Cross for donating blood-which is a good thing, BUT my Driver's License still has me designated as a DONOR. [Eek!]
Wonder how I can change it to donate to science rather than transplant?
Carol B

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Michelle M
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This is a really good thread.

I like to think of it as "Ironies of Lyme Disease."

Here's a good example which positively slays me.

The IDSA and the insurance companies assure me there's no such thing as 'chronic lyme' and therefore I must be cured by now. (Yeah, right.)

Then how can it be legal to deny me health insurance as soon as I put 'lyme disease' down on my application?

I mean, how can they have it both ways???

And the blood supply is another thing.

The insurance company tells me 'you get 7 days of Mepron to treat babesia WA-1 and after that, you're all better!'

But Red Cross, knowing better, says, 'Don't ever show up around here with your protozoa-infested blood!'

Again, how can they have it both ways?

Is it any wonder people hate insurance companies? And those in their service? (Micul's list is right on.)

Michelle

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2mag
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cobweb

good point !!
what a site to see ----


hospitals are harvesting lyme and babs infected organs

it would be interesting to bring this up to the organ donation banks

2mag

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Marz
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My MD, not surprisingly, like most MDs believes lyme is curable.

Even though he waited 8 months before putting me on an antibiotic I got better and was therefore "cured."

I asked him once when I was in remission a few years ago if it would be ok to donate blood and he said "sure".

I called the Red Cross and talked to a nurse just to be sure and she said "no thank you."

Wish I would have asked him why the Red Cross would refuse my blood when there's no such thing as chronic lyme!

Marz

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Melanie Reber
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Donating your body/organs to science

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=015463


(I should thank Tincup for this...but it makes me too sad)

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Melanie Reber
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Erythema migrans in solid-organ transplant recipients.

Maraspin V, Cimperman J, Lotric-Furlan S, Logar M, Ruzic-Sabljic E, Strle F.
Clin Infect Dis. 2006 Jun 15;42(12):1751-4. Epub 2006 May 5.

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.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

Courtesy: www.canlyme.com

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Melanie Reber
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Pubmed: Tick-borne disease transmission through blood transfusion

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=051539#000015

(thanks IMA [Smile] )

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Melanie Reber
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Tick-Borne Disease Transmission by Blood Donation Prevalent in Endemic Areas

October 20th, 2005 9:52 am

Medscape Medical News

The need to develop strategies to prevent transmission of tick-borne disease via blood transfusion is increasing as new reports continue to surface. Although not as much in the popular press as Lyme disease, Babesia microti is creating its own quieter havoc.

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.

Examination of 13,573 samples from blood donors from 1999 to 2004 in endemic regions of Connecticut showed that 175 samples (1.3%) tested positive for B microti infection based on indirect fluorescent antibody testing.

Of these 175, 129 donors consented to participate in a three-year follow-up study in which they were tested by IFA for the presence of antibodies to B microti as well as receiving nested polymerase chain reaction (PCR) testing for parasitemia on a regular basis. Overall, 27 donors (21%) were found to have parasitemia as indicated by a positive PCR test, suggesting that some patients have persistent, ongoing infection.

In addition, parasitemia rates decreased from 55% in the first two years of the follow-up study to 3% in the third and final year. Ms. Nguyen said the study did not show a clear reason for this, adding that many factors could account for it.

Ms. Nguyen emphasized that ``anybody who has had B microti is permanently prohibited from donating blood'' and is registered in the blood bank system of the Red Cross nationwide. However, it is important to identify those people infected with B microti prior to blood donation. According to Ms. Nguyen, most of the transfusion-related transmission occurs through people who are infected with the tick-borne disease but who are asymptomatic.

Identifying infected people before they donate blood is therefore an important goal in reducing the risk of transfusion-related B microti transmission, but the best way to do this is not yet clear, she said.

Richard Whitley, MD, a professor of pediatrics at the University of Alabama in Birmingham who moderated the session, told Medscape that prospective blood donors are not currently screened routinely for tick-borne diseases, an issue that needs to be addressed by local blood banks.

However, Ms. Nguyen told Medscape she is hopeful ``that there will be screening'' or a U.S. Food and Drug Administration (FDA) approval for testing before donation. Unfortunately, she added, she does not know of any test under investigation for FDA approval.

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TerryK
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Thanks for posting this Melanie. Wow, that seems like a high percentage. Very frightening. I wonder how many people I infected before I became too ill to give blood?

I often see fibromyalgia groups talking about giving blood and I cringe at the thought because I have no doubt that some of them will be passing on infection.

If I ever need blood I don't know what I'll do. I certainly couldn't get it from my family since almost all are sick and probably infected.

Terry

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canbravelyme
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I apologize for not checking out all the x-references, but I just don't have the brainpower [Smile]

What is the general feeling about organ donation? Is it better to receive a Lyme infected organ than none at all? I'm ambivalent...

Your thoughts?

Best,

CBL.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Melanie Reber
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Good morning Terry,
I too struggle with the moral consequences of giving blood before I knew I was infected. Thank Goodness, I was very bad at it, and the Blood Bank basically told me not to bother again.

As far as receiving blood for a medical emergency...it is always a gamble. But, if you know you are going in for a procedure, you can begin to store up your OWN blood in advance. Not a really great choice is it?

Hey CBL,
You ask a very good question that has been raised here before. It is my personal belief that we should NEVER donate any organs, tissue or blood for use on others. There have been studies where TBDs have been contracted with all of the above into a healthy patient.

Now, having said that...IF I had to make the choice of going without a critical organ, I think I would take my chances and receive an infected one vs. none at all. Then, there could at least be a possibility of treatment working on the infected organ...and the possibility of living vs. not.

This was accomplished with one case report of an infected patient. I don't know if any follow-up was completed...but temporarily, at least, the patient did ``recover from the newly acquired infection''.

It is my fervent hope and intent, down the road, that we will be able to set up proper donation channels for TBD infected patients; either for living transplant, or postmortem research.

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Melanie Reber
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Evidence of Borrelia burgdorferi in a Blood Donor

Presented at the International Conference on Emerging Infectious Diseases 2000 (July ,2000,Atlanta)
Abstract: HCV-Blood Safety - 4
S. J. Badon1, R. G. Cable1, J. Aslanzadeh

1. American Red Cross Connecticut Region, Farmington, CT; 2. UCONN, John Dempsey Hospital, Farmington, CT

It has been demonstrated that Borrelia burgdorferi, the etiologic agent of Lyme disease, can be cultured from blood. The period of spirochetemia appears to be brief. Although Borrelia burgdorferi can survive under blood bank storage conditions transfusion transmission has not been demonstrated. Herein we describe the isolation of Borrelia burgdorferi in a second Connecticut blood donation.

The blood donor was a 41 year old female with a questionable tick exposure. A day after blood donation she noted a bulls eye lesion over her side. She went to her physician and a clinical diagnosis of Lyme disease was made and she was treated with antibiotics. Serologic testing for Lyme disease was not performed. The donor notified the blood center and the donation was quarantined, sent for PCR analysis.

PCR was performed with a primer set for OSP A on the blood donation. The results were positive.

This finding is the second case in Connecticut and further supports the possibility that it may be possible to transmit Borrelia burgdorferi in a blood transfusion. However, since the spirochetemic phase of infection appears to be brief, the likelihood of transmission is low.

Nevertheless, it is expected that transfusion transmitted Lyme disease will be identified in the future.

(thanks Ann OH [Smile] )

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Melanie Reber
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Rocky Mountain Spotted Fever caused by blood transfusion.
Wells GM, Woodward TE, Fiset P, Hornick RB.
JAMA. 1978 Jun 30;239(26):2763-5 PMID: 418193

Transfusion of 500 ml of blood, contributed by a donor three days before the onset of Rocky Mountain spotted fever and refrigerated for nine days, caused this disease in the recipient.

The blood donor died of Rocky Mountain spotted fever after six days; rickettsia were identified in various tissues by immunofluorescence techniques.

The recipient of the blood became mildly ill and recovered fully; specific antibiotic treatment was initiated on the fourth day of illness. Diagnosis of Rocky Mountain spotted fever was confirmed in the recipient by positive serologic reactions and isolation of Rickettsia rickettsii from blood after inoculation in animals and tissue culture.

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Melanie Reber
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Proceedings of a consensus conference: pathogen inactivation-making decisions about new technologies.

Webert KE, Cserti CM, Hannon J, Lin Y, Pavenski K, Pendergrast JM, Blajchman MA.
Medical, Scientific, and Research Affairs, Canadian Blood Services, Hamilton, Edmonton and Toronto, Canada. [email protected]

Significant progress has been made in reducing the risk of pathogen transmission to transfusion recipients. Nonetheless, there remains a continuing risk of transmission of viruses, bacteria, protozoa, and prions to recipients. These include many of the viruses for which specific screening tests exist as well as pathogens for which testing is currently not being done, including various species of bacteria, babesiosis, variant Creutzfeld-Jacob disease, hepatitis A virus, human herpes virus 8, chikungunya virus, Chagas disease, and malaria.

Pathogen inactivation (PI) technologies potentially provide an additional way to protect the blood supply from emerging agents and also provide additional protection against both known and as-yet-unidentified agents. However, the impact of PI on product quality and recipient safety remains to be determined.

The purpose of this consensus conference was to bring together international experts in an effort to consider the following issues with respect to PI: implementation criteria; licensing requirements; blood service and clinical issues; risk management issues; cost-benefit impact; and research requirements. These proceedings are provided to make available to the transfusion medicine community the considerable amount of important information presented at this consensus conference.

PMID: 18063190 [PubMed - in process]


(thanks TC [Smile] )

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Tracy9
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Not only did the Red Cross not ASK my son if he had Lyme or Babs when he very recently donated blood at his high school, when I called their 800 number to tell them he did, NO ONE EVER CALLED ME BACK. I told them it was important, his blood should not be used, but it is just an answering service or something that takes your name and number, and they NEVER called back.

So now someone is walking around with his blood, oh and by the way, we live in CT, kind of an endemic area, I would say.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Melanie Reber
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That is pretty pathetic, Tracy. I hope someone was paying attention, and did something but just didn't call you about it.

(one can hope) [Smile]

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Tracy9
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Well they never even took my son's name or where he had donated; it was a national 800 number; so they couldn't have done anything.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Keebler
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-

Cobweb ,

Yeah, my driver's license has a permanent "donor" mark, too . . . started long before I knew I shouldn't

I asked about that at the DMV for the last renewal and they said that other papers would have to be in place and that family would have to OK donation. As long as family knew it was not longer safe to do so, their should be no problem.

What we have on our emergency/ final instructions is what matters.

-.

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Melanie Reber
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FDA/CDC WARN AGAINST BLOOD DONATIONS BY THOSE POSSIBLY EXPOSED TO TICK-BORNE ILLNESSES


"These establishments need to be informed that these National Guardsmen may have been exposed to tick-borne pathogens which could possibly be transmitted through blood transfusion.

If notified, blood establishments should take immediate steps to retrieve the potentially affected blood and blood components intended for transfusion."

http://archives.foodsafety.ksu.edu/fsnet/1997/7-1997/fs-07-22-97-01.txt


(thanks TC [Smile] )

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Melanie Reber
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http://www.fda.gov/cber/meetings/ttb091208.htm

"We are convening this workshop at the present time because FDA has observed a recent increase in the number of reports of transfusion-transmitted babesiosis..."

"...During the last 40 years, more than 60 cases of transfusion-transmitted babesiosis have been recognized in the United States. In years 2006 and 2007, FDA received a total of five reports of fatal transfusion-transmitted babesiosis (primary or contributory cause of death) in the United States..."


(thanks ldfighter [Smile] )

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Melanie Reber
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Anaplasma phagocytophilum Transmitted Through Blood Transfusion --- Minnesota, 2007

Morbidity and Mortality Weekly Report, October 24, 2008
MMWR 57(42);1145-1148

Anaplasma phagocytophilum, a gram-negative, obligate intracellular bacterium of neutrophils, causes human anaplasmosis, a tickborne rickettsial disease formerly known as human granulocytic ehrlichiosis.

In November 2007, the Minnesota Department of Health was contacted about A. phagocytophilum infection in a hospitalized Minnesota resident who had recently undergone multiple blood transfusions. Subsequent investigation indicated the infection likely was acquired through a transfusion of red blood cells.

This report describes the patient's clinical history and the epidemiologic and laboratory investigations. Although a previous case of transfusion-transmitted anaplasmosis was reported, this is the first published report in which transfusion transmission of A. phagocytophilum was confirmed by testing of the recipient and a donor.

(thanks Rick)

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=3&t=020857

[ 03. November 2008, 04:44 PM: Message edited by: Melanie Reber ]

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madge
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Melanie, God bless you, you are doing such a wonderful job...hope the word gets out all over..if they could report this subject on TV..boy would it get out...thanks

--------------------
madgen

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Melanie Reber
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Thank you Madge, that is very kind of you.
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Melanie Reber
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Title
Bartonella henselae survives after the storage period of red blood cell units: is it transmissible by transfusion?

Author(s)
Magalhes RF, Pitassi LH, Salvadego M, de Moraes AM, Barjas-Castro ML, Velho PE

Institution
Department of Medical Clinic, Dermatology Division.

Source
Transfus Med 2008 Oct; 18(5):287-91.

Abstract
Bartonella henselae is the agent of cat scratch disease and bacillary angiomatosis. Blood donors can be asymptomatic carriers of B. henselae and the risk for transmission by transfusion should be considered.

The objective of this study was to demonstrate that B. henselae remains viable in red blood cell (RBC) units at the end of the storage period. Two RBC units were split into two portions. One portion was inoculated with B. henselae and the other was used as a control. All units were stored at 4 degrees C for 35 days. Aliquots were collected on a weekly basis for culture in a dish with chocolate agar, ideal for the cultivation of this agent.

Samples were collected on days 1 and 35 and taken for culture in Bact/Alert(R) blood culture bottles. Aliquots taken simultaneously were fixed in Karnovsky's medium for subsequent electron microscopy evaluation. Samples from infected bags successfully isolated B. henselae by chocolate agar culture, although Bact/Alert(R) blood culture bottles remained negative. Bartonella spp. structures within erythrocytes were confirmed by electron microscopy. The viability of B. henselae was demonstrated after a storage period of RBC units.

These data reinforce the possibility of infection by transfusion of blood units collected from asymptomatic blood donors.

Language eng
Pub Type(s) Journal Article
PubMed ID 18937735

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cactus
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bump

--------------------
Did you ever stop to think, and forget to start again? - A.A. Milne

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Melanie Reber
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The National Marrow Donor Program

"Other conditions that may prevent registration are having a serious bleeding problem, a serious breathing problem such as chronic obstructive pulmonary disease (COPD), heart disease, hepatitis B or C, serious or chronic kidney problems, Lyme disease, or having active pulmonary tuberculosis (TB) within 2 years of potential registration."


http://www.healthnews.com/disease-illness/healthnews-salutes-the-national-marrow-donor-program-2459.html

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liesandmorelies
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Of course we should not donate blood or organs, unless of course it is for Lyme research etc...

But, I do find it interesting that the mainstream does not think our disease can be chronic once treated with short course of abx, and yet at the same time they tell us that we are not supposed to donate blood! HUH????

Why would we not be able to donate if the IDSA's recommended treatment plan works so well???

I Sure would like to give Steere et' all, some of my blood.

They are full of _ _ _ _!!!!!

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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bettyg
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stop,

i used address label to show NO ORGAN DONOR on my driver's license, and contacted the blood registry, etc. to DELETE MY FORMER REQUEST to donate anything!!


LYMIES, CHECK YOUR DRIVER'S LICENSE TO SEE WHAT IT SAYS ... CHANGE IT TO "NO" DONATIONS. thanks! [group hug]

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Tincup
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NOBODY wants me anymore!


[Eek!]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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mustluvdogs
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Hi. Just wanted to let you know that as soon as I found out I had it I called the Red Cross because they used to call me for my blood all the time.

I told them they had to track down who received my blood and they said they would. I hope they do. I feel awful about that.

I can't give blood for a year.

I would think they need to screen for that too.

Good post

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tickssuck
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Yes, another HUGE problem when we don't get diagnosed, among a laundry list of others.

I still feel horrible as I donated blood at least 6 times while I was acutely sick, but of course, docs couldn't find anything wrong with me. I had no idea I was carrying infected blood etc. I just knew something was terribly wrong with me. Having Lyme, Babesia, Ehrlichia, Bartonella, Mycoplasma....I feel terrible about this and have cried about it more than once. I have called the Red Cross as well to inform them.

When will the medical community ever wake up??? It's just crazy. TS

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Geneal
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You can't donate ever in Louisiana if you've

Ever been diagnosed with babesia either.

For Lyme the stipulation is to be without the disease for 5 years

Prior to donating again.

Ah well. I had Hepatitis A when I was 17.

I never was eligible to donate.

Hugs,

Geneal

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randibear
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mustluvdogs, i think you might want to reconsider and say "you will never be able to donate blood again"...

i'll never do it and would not want to put anyone at risk for this awful disease...

--------------------
do not look back when the only course is forward

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mustluvdogs
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Randibear you are right. I wouldn't want to either.
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Melanie Reber
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Babesiosis Acquired through Blood Transfusion, California, USA
Van Ngo Comments to Author and Rachel Civen
Author affiliation: Los Angeles County Department of Public Health, Los Angeles, CA, USA
CDC Dispatch Volume 15, Number 5-May 2009

Babesiosis was documented in a man with metastatic cancer who resided in an area nonendemic for B. microti. On the basis of laboratory and epidemiologic information, we concluded that the patient acquired the infection via transfusion of infected PRBCs donated in a disease-endemic area thousands of miles away.

The 12-day period from donation to transfusion was within the maximum 35 days that B. microti has been known to remain viable in refrigerated blood (7). The period from time of transfusion exposure until positive smear was ≈6 weeks; incubation periods for transfusion-related cases have ranged from weeks to many months (B. Herwaldt, pers. comm.)

http://www.cdc.gov/eid/content/15/5/785.htm

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pippifern
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Bone Marrow Donation
I went to a bone marrow registration drive the other night. I didn't know if our stem cells would be viable to use for this purpose. The paperwork this organization provided was that it was o.k. to be a donor if you have been successfully treated for Lyme... That's a tricky one, isn't it?? Who's to say what successful means?

--------------------
To our good health,
Pippifern

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KorkerMom
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this makes me so sick.
The backwards thinking of the medical community!

Like so many of you said, they won't treat us or take us seriously, but then they are adament about NOT using our organs or blood!

I used to sell my plasma to pay for college, which would have been after my Lymes. I only know that now, but boy does it make me feel bad.

When I had surgery I got to donate my own blood. It makes me sad that should my children ever need it, I wouldnt be able to help them [Frown]

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TerryK
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just adding an exerpt that mentions TBI's (tick borned infections) from a journal article about infections transmitted from transplants.

http://cid.oxfordjournals.org/content/44/6/857.full
Zoonoses in Solid-Organ and Hematopoietic Stem Cell Transplant Recipients


Systemic and other infections.

There have been numerous reports of ehrlichiosis reported in transplant recipients, including human monocytic ehrlichiosis due to Ehrlichia chaffeensis infection in liver [26,27-28], kidney [29, 30], and lung [31] transplant recipients and several cases of human granulocytic ehrlichiosis due to Anaplasma phagocytophilum infection in kidney [6, 7] and pancreas [8] transplant recipients.

Rickettsia rickettsii infection (Rocky Mountain spotted fever) has been described after heart transplantation [55], and Rickettsia conorii infection has been reported after liver transplantation [56].

Borrelia burgdorferi infection (Lyme disease) has been described in the literature in transplant recipients, including 1 kidney transplant recipient [14], 1 heart transplant recipient (with carditis) [15], and 1 allogeneic hematopoietic stem cell transplant recipient [16].

Bartonella henselae infection has been described after heart [9] and kidney transplantation [10,11,12-13], with variations in the manifestation of infection that include hemophagocytosis [137], closely associated acute allograft rejection [10], peliosis hepatis [138], peliosis hepatitis and hepatorenal syndrome [139], pulmonary nodules [140], and osteomyelitis [141].

Brucella species infection has been reported after kidney transplantation [21, 22] and as a donor-derived infection during HSCT [23], mostly in areas of endemicity. Live, attenuated Brucella animal vaccine has been linked to human disease and has the potential to cause disease in immunocompromised hosts [134]. Listeria monocytogenes infection has been well described in patients who undergo SOT and HSCT [37, 38, 41], including the rare clinical manifestations of tricuspid valve endocarditis with septic pulmonary emboli [39], epididymitis and orchitis [40], and skin infection with cerebritis and hemophagocytosis [42].

A small number of cases of human tuberculosis are due to Mycobacterium bovis infection, also known as zoonotic tuberculosis-an opportunistic infection in immunocompromised hosts [142]; M. bovis infection of the urinary tract has been documented after kidney transplantation [43].

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randibear
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what part of "i have lyme and can't donate forever" don't people understand???

--------------------
do not look back when the only course is forward

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racer
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Here's more evidence against blood supply dangers:

Subject: [MassachusettsLyme] Pathogens in the Blood Supply (Babesia)

Presented by the Emerging Infectious Diseases & Microbiology Discussion Group
Posted May 27, 2011
Overview

According to the American Blood Center, approximately 14 million units of blood are transfused in the United States every year. Current screening protocols routinely test for several pathogens, including the Hepatitis B virus, Hepatitis C virus, Human Immunodeficiency Viruses types 1 and 2, Human T-Lymphotropic virus types 1 and 2, and syphilis. Recent headlines indicate that the blood supply may contain other organisms, such as Xenotropic Murine Leukemia Virus-Related Virus (XMRV), that are not currently being identified in these routine screens. At the Pathogens in the Blood Supply symposium held at the New York Academy of Sciences on March 29, 2011, experts from a range of backgrounds came together to discuss the current problems, reveal recent advances in the testing and screening of the blood supply, and explore future directions for the improvement of screening protocols.
read more here:

http://www.nyas.org/Publications/EBriefings/Detail.aspx?cid=f89d1246-0d45-453a-b51d-ae3dba9d8bd6

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Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive
Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+)

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ukcarry
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Anybody with Lyme thinking of donating blood or organs must really need their head examined [and I usually express myself mildly!]......

..unless, of course, you are motivated by a sadistic desire to harm other people instead of help.

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Lymetoo
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Amen, UK!!

I just read something in our local paper that said a person gave someone else their extreme peanut allergy by donating their lungs!!!!!!! [Eek!]

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--Lymetutu--
Opinions, not medical advice!

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METALLlC BLUE
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We're closer than we've ever been to custom designing organs for people. It'll happen in the next 15 years that commercial availability will take place.

Soon we won't even have to discuss this issue, we'll simply not have to donate anymore. People can get "brand new" parts instead of used parts.

They've already designed working hearts, and lungs and a number of other organs in laboratories, and transplanted some of these "custom" organs into animals after removing their healthy hearts/lungs. The "lab grown replacement parts" worked just as well as the originals and never gave out nor required any immuno suppression therapies since the custom design of the organs were created from the cells of the same animal that the organ was being designed and grown for.

Hope that helps put some people at ease on that issue.

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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.

E-mail: [email protected]

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RDaywillcome
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Tried donating blood years ago, told me that I had a temp and wasn't any good!

Now what? Try again? Let's see?

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Lymetoo
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They won't mind taking your blood, Lyme or not. Please don't do it.

--------------------
--Lymetutu--
Opinions, not medical advice!

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AlanaSuzanne
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Well all I can say is I disagree with you all.

People who are in organ failure don't give a rat's a$$ if you have LD/cos.

You all think you're doing a disservice by donating your "infected" organs. To those laying in bed dying a slow death, you're giving the gift of life. It really is that simple.

If you have a functioning heart, kidney or liver, that's good enough. For all they and you know you could be brewing cancer or any other number of diseases. Such is life.

Keep in mind that organ recipients are given potent abx and antivirals from the get-go along with the immmunosuppressants.

These patients are followed very closely for a very long time. Any issues that arise are treated asap. Transplant centers are very focused on their patients. It is in everyone's best interest that the transplant lasts as long as possible. It is a special gift that no one wants to lose.

I did a very quick google search. Yes, TBI can be transmitted via organ/blood donation. But we all knew that anyway. Does that mean we stop donating? HELL NO! Here are the results of the search:


Erythema migrans in solid-organ transplant recipients.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=pubmed

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

NEWS Print This Page | E-Mail This Article | Subscribe

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.

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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

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METALLlC BLUE
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I posted this in another thread and I hope people will take it's consideration very seriously.

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.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
   

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