Topic: What the heck happened to the "civil duty...give blood" topic?
Truthfinder
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posted
What happened to this topic?
"By the first of the year,we can do are cival duty,and give blood."
We were just talking there yesterday!! There were some good ideas.
I can use a search to find the topic, but when I try to access it, the topic does not exist!
What is going on here?
I noticed that I couldn't access the LymeNet board early this morning. Did that have something to do with it?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Michelle M
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I thought that thread contained some excellent, "out of the box" ideas, as Groovy put it.
I did not see anything illegal suggested.
I am equally mystified.
I am sure our moderators are trying in good faith to protect us.
However, I think we also have a right to peaceful protest and assembly.
LymeNet's servers will be unable to accommodate the sheer numbers of sick people soon to be created by the new IDSA guidelines.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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-------------------- 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.
posted
This is what happened to that topic. See the study posted below from August 2006.
Use your head...such suggestions, to threaten to donate lyme-infected blood, are morally repugnant and possibly illegal and I think the site administrators recognized that.
It probably will not be long before the red cross and the CDC take action on this issue, to insure that lyme infected blood stays out of the nation's blood supply. By the way, people who need blood transfusions are typically already ill with another serious condition. Why would you want to give them such a horrible disease as lyme? And, through a transfusion, there will be no rash, so they will be practically guaranteed to develop a late stage, difficult to treat manifestation which will possibly ruin their lives.
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. August 2006
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.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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quote:It probably will not be long before the red cross and the CDC take action on this issue, to insure that lyme infected blood stays out of the nation's blood supply
That's not going to happen ~ most people with lyme disease don't even know they have it since they are given other diagnosis such as FM, CFS, MS, Lupus, ALS and a host of other so called diseases.
lymie tony z
Frequent Contributor (1K+ posts)
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posted
Gotta agree with Aligondo on this one!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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treepatrol
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posted
Hey thats wierd I just found that topic and posted it I mean I read it it was there and now it takes you to theres no topic page???
I wonder if because of the mess up this morning if it dissapeared because of maybe Tom cleaning out sever???
-------------------- 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.
Michelle M
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Member # 7200
posted
Bruce, no one was talking about donating blood. If you didn't bother to read past the title of the thread, don't go off acting like we're all a bunch of monsters.
The thread was about drawing attention to the inanity of the conflicting positions:
Red Cross: If you're recovered from lyme x 1 year, donate. If you have chronic lyme, do not donate ever.
IDSA: There is no such thing as chronic lyme.
Someone needs to air this out. NOT by giving infected blood, of course. By assembling peacefully at a blood bank with a copy of the IDSA Guidelines, and asking how this can be...? Yeah, maybe.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Greatcod
Unregistered
posted
I posted on General a proposal for getting written positions from the Red Cross on blood donation, using the concept of Post Lyme Syndrome, rather than chronic Lyme, to describe our status. Blood donation brings the Lyme conflict to a head, to my mind.
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kelmo
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They don't want your blood if you are on antibiotics, anyway.
Most of the people that do blood draws at the blood centers wouldn't have a clue about lyme and the potential risk.
Still, if someone should read that thread, it could've been twisted and used as ammunition.
I still think it's a good idea to contact our blood centers and ask their policy on lyme infected donations. That, in itself, should get them to think.
Posts: 2903 | From AZ | Registered: Feb 2006
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Truthfinder
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posted
Boy, it just doesn't pay to try to respond to some people who have no clue about what is really going on........ S.O.B...
Perhaps the original topic had pretty much played itself out, but the fact that it MYSTERIOUSLY DISAPPEARED is really troubling. Surely the Moderators would never make a snap judgment to delete a thread before reading it thoroughly, would they? Does Tom need to use a smaller broom when cleaning out the server?
We NEED to be able to kick these ideas around. A new approach to the problem is desperately needed. We've all tried to cope with the inequities of being stuck with Lyme in a hostile medical environment with the hope that things would slowly improve as more became known.
Obviously, that hasn't worked.
So, I hope we can keep talking about this kind of stuff and throwing out fresh ideas.
I still think some of the ideas posted in this original thread were darned good ones.
My thinking is that letters could be sent to the Red Cross and other ``blood collectors'', plus maybe the administrators of some major hospitals that have large quantities of blood on hand. In my letter, I could just tell them that despite the positive test for Lyme that I have, it does not meet the CDC criteria or the IDSA guidelines for a ``diagnosis of Lyme'' and therefore, I plan to donate blood during the next drive, along with thousands of my Lyme friends who don't have Lyme either, according to the accepted criteria.
In the interest of protecting my own skin and anybody associated with me (including my doctors), I would NOT give my name or my address. I might even make sure it gets postmarked in another town. I've got enough problems.
Let the Red Cross, etc. call the CDC and the IDSA and start asking questions.
Anyway, let's keep thinking and talking........
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
listen, IT DOESN'T MATTER what IDSA has to say on this topic. IDSA is a private association. your gripes with them have NOTHING to do with the safety of the nation's blood supply. The red cross and the CDC are the appropriate authorities for determining what is and isn't safe in the blood supply.
Someone with a holistic understanding of lyme science including and especially research over the past couple of years would understand WHY I strongly advise against donating blood. Studies of relapsing fever {B. hermsii} have indicated that one single spirochete injected into a mouse can be sufficient to cause clinical disease.
What I am saying is, all it takes is ONE VIABLE spirochete to cause disease...and in late chronic lyme caused by sensu stricto strains, regardless of what some idiots at IDSA are saying, there is a risk if you donate blood that a single spirochete {at least} could be passed on.
If you have chronic lyme disease, DO NOT donate blood. period. there are plenty of others without disease who CAN donate blood. why would ANYONE want to risk infecting someone else?
This issue IS NOT about the hypocrisy or fallability of IDSA. It is about protecting the well-being of your fellow citizens in the face the repression. it is about exerting upon others the morality which you yourself expect from IDSA types.
'8man12' you need to realize that there are other perspectives on this disease aside from IDSA. again, IDSA is a PRIVATE organization. Do they manage the blood supply? NO.
There are two basic types of lyme disease caused by s.s. strains. One is that described by steere et. al., ie early stage inflammatory disease. The other is CNS disease which is very difficult to treat. Read the recent reports by CDC...and by sven bergstrom earlier in the year wrt residual RF spirochetal brain infection. the spirochetes are hiding INSIDE live human CNS cells. and, apparently, occasionally they are re-released into the circulation.
rapid changes are taking place. it may not be apparent to the average patient who has experienced years of torment and abuse by "the system" {BTW that includes me}. But the last thing the lyme advocacy movement needs is some insane suggestion that we all threaten to donate blood, or anything of the sort. stay away from that, please.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
The issue is not intentionally donating blood when we know we have Lyme disease. The issue is that many people will unknowing donate contaminated blood due to doctors using the new IDSA guidelines.
That makes the issues connected. Taking action to help make the blood supply safe could also attract attention to the Lyme disease epidemic.
My dad may have donated blood when having Lyme or may have gotten Lyme from a blood transfusion. It also worries me that my mother received 27 units of blood early this year when she had surgeries, etc.
That being said, it is scary that the brain-storming here could be used against us. Some comments are obvious dark humor or scarcasm. It helps me reduce tension sometimes, but others may misinterpt it.
I believe everything should be peaceful, but I wouldn't be above a little peaceful passive resistance though.
Posts: 158 | From Ecuador | Registered: Apr 2006
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Truthfinder
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First, let me be clear: I have no intention of donating blood.
Second, there is probably a way of drawing attention to this problem without resorting to any kind of threat, but WHAT?
It will have to be something pretty significant or the only thing that will change is the wording of the questions you are asked when you donate blood. That isn't good enough.
I think it will take a lot of important people getting very nervous about the safety of the nation's blood supply for anything substantial to be gained from this. So, HOW?
I don't want any negative press for the Lyme movement either. On the other hand, if I put forth some energy on this - something in short supply these days - I want to be pretty darned sure it's on something that has a prayer of making a difference.
``Rapid changes are taking place''? I've been hearing that for 3 years, and I think things are worse now than they were then.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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trails
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quote: Taking action to help make the blood supply safe could also attract attention to the Lyme disease epidemic.
you got it pigwit!
Because (as you said) the supply is NOT safe under the current regs and ESPECIALLY because of the IDSA guidelines.
Direct action and civil disobedience are the tools we have to change the world peacefully. A well coordinated "protest" and action staged at red cross centers across america with press invited in will NOT change much, but it is a BEGINNING!
Never doubt that a small group of thoughtful, committed citizens can change the world. margaret mead
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Some folks just never get how to play poker.....and patriots are always called terrorists in the beginning of any resistance............where the risky, hard decisions are made.........where the timid and shallow minded wring their hands and hide under their beds.
This situation reminds me of a quote from a very smart fellow a long time ago:
"If you love wealth more than liberty, the tranquility of servitude better than the animating contest of freedom, depart from us in peace. We ask not your counsel nor your arms. Crouch down and lick the hand that feeds you. May your chains rest lightly upon you and may posterity forget that you were our countrymen.,.."
Posts: 294 | From nevada | Registered: Sep 2005
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Michelle M
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posted
quote: Originally posted by trails:
Because (as you said) the supply is NOT safe under the current regs and ESPECIALLY because of the IDSA guidelines.
Direct action and civil disobedience are the tools we have to change the world peacefully. A well coordinated "protest" and action staged at red cross centers across america with press invited in will NOT change much, but it is a BEGINNING!
Never doubt that a small group of thoughtful, committed citizens can change the world. margaret mead
'Zackly.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Assuming the thread was deleted, I see the wisdom in doing so... how many times have quotes been taken out of context, reprinted elsewhere and twisted so that the irony and sarcasm are lost? That, truly, is about the last thing we need right now.
The whole point of the original post/thread was pretty clear if you read the whole thing(obviously none of us wants to infect anyone else) -- however, if one does not have the option of reading some things *in context* -- it could make us look reckless, irresponsible, and even less credible than we already do in the mainstream media.
That said, pointing out that the IDSA guidelines and the faulty testing and all the rest really do put the nation's blood supply at risk is neither reckless nor irresponsible -- I say it is quite the opposite. Anyone here remember how long it took for the blood banks to start screening for HIV-risk-factors? This point is made very well in the book "And the Band Played On." Even if the blood banks/Red Cross, etc. were to screen for Bb using the current standards of testing, a lot of infected blood (donated by unsuspecting donors who didn't realize they were ill) could get through....
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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groovy2
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Hi All
I am Surprised the post got deleted--
I can understand why the post started to cause some concern tho--
I had to read it twice before I saw 8mans point--
8man was thinking- Out of the Box -and trying to stir thing up--It worked-- at least here on LN--
Trying to work threw the System dose Not seem to be working- Its going Backwards from what I see--
Hiding in the corner and Hoping things will get better- Never Works -
I have No Idea why the Medical Industry and Insurance Industry want Lyme disease and us to go away -But they Do-- (Most likely Money tho)
Both of these Industrys spend hundreds of millions of dollars to convence people (there customers) that they do a Good Job-( Advertizing )
Now with the internet WE are on somewhat equal ground --
Example--
I have posted some silly videos on a few sites like -YouTube- Google Video-Yahoo Video- ect--
In about 6 weeks my videos have over 250,000 views-(quarter million)--
I entered one of my videos in a political video contest-4 days ago- as of earlier tonight it has 33,000 views-
We (You) have Power that is not being used-
This is a example of how to use power-
I bought a computer flat screen monitor made by Samsung--Nice moniton-looks and works good--
I bought one monitor about one year ago-- Samsung screwed me out of $120 rebate- I was to sick to hassel with them so I just blew it off--
6 months ago I bought a second matching monitor and Samsung is Trying to screw me out of $100 again--
I have copies of All the paper work and the criptic and confusing emails they have sent to me--
I also recorded my phone conversation last week with a Samsung repersenative that basically blew me off
Well this time I am not so sick and I am going to make a Video about what Samsung is trying to do to me again-- (I Hate getting screwed)
Im Sure I can make a good video that people will watch -talk about- and remember--
I am going to post this video on Many video sites(over 30 sites avaiable) and send Samsung managment a link to the videos-
I am also going to Add the video as a Trailer to every video I make(post) for the next year or so-- (I dont forgive easily)
In the next year( maybe) a millon people will see this video --
Will Samsung crumble from within because of my video-No-
Will I get my money? Im perty sure I will-
Example 2-
I had a problem with the State of Texas about 9 yrs ago--
The state was Clearly in the wrong but the state thought they could just blow me off--
I called the state office and asked for a interview about my case to be filmed and shown on local TV--
Of corse I knew that the State would decline to do the interview--
I told them the interview was going to take place wether there repersenitive showed up on not-and the interview was going to be Very One sided with out them--
Within a few days I got a letter from the State saying it was a Oversight and that I was correct --Sorry--
Rocking the Boat -Wisely- is Powerful-
Think Out of the Box --Jay--
Ps-from just me posting this on LN maybe a couple of hundred people Know that Samsumg will try to screw you out of Rebates-
[ 25. October 2006, 04:26 AM: Message edited by: groovy2 ]
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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lymie tony z
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posted
Good point Jaymeister...
so uhhh
.....How is it you have'nt posted a video about lyme disease and IDSA and stuff??
If your waiting for me your backing up!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Truthfinder
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posted
My boyfriend is a prime example of the problem the blood collection centers face.
He has so few Lyme symptoms that even an experienced LLMD would never ``clinically diagnose'' him with Lyme. He appears to be in overall good health (minus the odd little neuro problems he has, and the increasing problems with his joints and muscles - old age creeping in, of course).
He is also one of those few, sought-after ``O negative'' universal blood donors, so the blood banks loved to see him come in.
The trouble is, my boyfriend DOES have Lyme - his Bowen test result was the highest you can get, just like mine. But we don't think he got Lyme from me - we think he has been dragging the Lyme bug around since he had lots of tick bites growing up in New Jersey as a kid.
The kicker is that he gave blood regularly for years when we had a blood collection system here locally. (!!!)
Someone gets a blood transfusion in the U.S. every 10 seconds - scary thought when you consider how many people like my boyfriend may be doing their ``civic duty'' by donating blood.
Where we live, there are no blood collection facilities - the closest is 150 miles away and I've not met any Lymies in that area either. So any kind of ``demonstration'' for us is out of the question.
Our only viable option is to write letters or disseminate information in some other way.
The people who really need to be aware of this are the people receiving donated blood. And yet, even if there was a way to contact those people, I have a real problem with scaring the daylights out of anybody ill enough to need a transfusion in the first place. They don't have any options.
And you what really chaps my fanny? If blood collection facilities would use the Bowen Q-RIBb test as a screening test right at the facility, it only takes 20 minutes to get the results!!! They would know almost immediately whether blood was infected with Bb or not. (And yes, the Q-RIBb test system is in use even in some doctor's offices, so this is a reasonable option.)
Sorry, I guess I'm doing too much thinking out loud here. Just trying to get the brain juices flowing to come up with new ideas.
Incidentally, the Red Cross doesn't service all states, like Colorado and New Mexico. There seem to be 3 basic blood collection entities, listed below, if anyone is interested.
AABB - basic criteria for donation: http://tinyurl.com/yaeh8e (Ha, ha - these people claim ``... There is no risk of contracting AIDS or any other disease through the donation process.'')
America's Blood Centers - not associated with the Red Cross - brief donation criteria: http://www.americasblood.org/go.cfm?do=Page.View&pid=2 (These people claim that ``.... The blood supply is the safest it's ever been...''
Incidentally, there have been no confirmed cases of Lyme being transmitted by transfusion, but there have been 28 confirmed cases of Babesiosis.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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treepatrol
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quote:Originally posted by Truthfinder: Incidentally, there have been no confirmed cases of Lyme being transmitted by transfusion, but there have been 28 confirmed cases of Babesiosis.
Tracy
Whoa They have changed there criteria wonder when exactly they removed no donating blood if you had lyme???
Look heres just a few to remember that they wouldnt except blood from lyme before. I wonder if this has something to do with the new crappy guidlines put out?
Blood collection agencies and centers on blood donation and Lyme disease [Lyme disease: "defer indefinitely"] American Red Cross -- Learn About Blood Donation -- Eligibility Guidelines
[Lyme disease: donate if "undergone a full course of antibiotic treatment and no longer have any symptoms"] American Association of Blood Banks (AABB), All About Blood, Sep 99
[Lyme disease: "defer indefinitely"] The American National Red Cross: Who may give blood, 1999
[Lyme disease "would permanently disqualify an individual as a... blood donor"] UCSF Blood Centers, Donation Guidelines
[Lyme disease: "six months after date of last signs or symptoms/48 hours after treatment and no signs or symptoms"] nybloodcenter.org
[Lyme disease: "six months after symptoms are over"] New York Medodist Hospital, Giving Blood
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Permanent Deferrals The following conditions would permanently disqualify an individual as an allogenic or designated blood donor. For further information, contact the UCSF Blood Center at (415) 353-1809.
AIDS Persons with clinical or laboratory evidence of AIDS infection Men who have had sex with another man, one or more times since 1977 Past or present intravenous drug users Persons with hemophilia who have received clotting factor concentrates Sexual partners of any of the above Angina Arthritis - Gold Therapy Arrhythmias Brucellosis/Babesiosis Cancer - Any type except for cured cancer of the skin, basal, squamous cell, or cervix, insitu Chagas Disease Creutzfeldt-Jakob Disease Heart Disease - Heart failure or coronary artery diseases such as angina pectoris or a heart attack (myocardial infarction) Hemophilia Hepatitis - Yellow jaundice and a history of the disease or a positive lab test for the virus Human Pituitary Growth Hormones Idiopathic Thrombocytopenia Purpura (ITP) IV Drugs Kaposi's Sarcoma Lyme Disease Melanoma Organ Failure - Kidney, lung, heart, liver failure Recreational Drug Use (injection) - Having injected yourself with drugs not prescribed by a physician Stroke Yellow Jaundice - Before age 11 is acceptable. Thereafter, it is not acceptable. Biliary obstruction is acceptable. From: UCSF
:::::::::::::::::::
:::::::::::::::::::
Lyme Disease (Confirmed) 1) If no signs or symptoms: Defer until treatment is completed. 2) If signs or symptoms are present, defer
"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, babesiosis or leishmaniasis are not eligible to donate blood." From:
Survival of Borrelia burgdorferi in human blood stored under blood banking conditions RB Nadelman; C Sherer; L Mack; CS Pavia; GP Wormser Hematogenous dissemination of organisms occurs in many spirochetal diseases, including Lyme disease and syphilis. Although syphilis has been transmitted by transfusion, in the vast majority of cases, only fresh blood products were involved, in part because Treponema pallidum survives poorly when refrigerated in citrated blood. Because of the rising incidence of Lyme disease in certain areas, whether its causative agent, Borrelia burgdorferi, could survive under blood banking conditions was studied. Dilutions of stock cultures of two strains of B. burgdorferi were inoculated into samples of citrated red cells (RBCs). 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.
:::::::::::::: Borrelia burgdorferi: survival in experimentally infected human blood processed for transfusion.
Johnson SE, Swaminathan B, Moore P, Broome CV, Parvin M.
Meningitis and Special Pathogens Branch, Centers for Disease Control, Atlanta, Georgia 30333.
The isolation of Borrelia burgdorferi from blood raises the possibility of bloodborne transmission of Lyme borreliosis through transfusions. To assess this possibility, the ability of B. burgdorferi to survive in human blood processed for transfusion was studied. Human blood was inoculated with B. burgdorferi type strain B-31 (ATCC 35210) at 0.2, 20, or 2000 viable cells/ml, processed by conventional blood banking procedures, stored at 4 degrees C, and cultured for B. burgdorferi at 12, 23, 36, and 48 days of storage. After processing, most B. burgdorferi were found in the packed cell fraction. At inoculum levels of 20 or 2000 viable cells/ml, B. burgdorferi survived in processed blood through 48 days of storage at 4 degrees C. B. burgdorferi was isolated from packed cells after 36 days of storage at 4 degrees C even when the initial inoculum level was as low as 0.2 cells/ml. The data demonstrate that B. burgdorferi can survive the blood processing procedures normally applied to transfused blood in the USA. Since hematogenous spread of the spirochete seems to occur early in the illness, primarily in symptomatic patients, the risk of transfusion-associated Lyme disease may be small. However, the possibility of survival of B. burgdorferi under blood banking conditions warrants a heightened awareness of this potential problem.
What the He LL is wrong with country? devils in the details
-------------------- 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.
-------------------- 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.
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I wonder why the Red Cross doesn't even mention Lyme in thier basic blood donation guidelines?
Perhaps it is a regional thing.... in New Jersey, the guidelines are a lot different than in Montana.
Still, you would think it would be a BASIC concern to them....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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treepatrol
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posted
quote:Originally posted by Truthfinder: I wonder why the Red Cross doesn't even mention Lyme in thier basic blood donation guidelines?
Perhaps it is a regional thing.... in New Jersey, the guidelines are a lot different than in Montana.
Still, you would think it would be a BASIC concern to them....
Tracy
Thats what I posted about they did before.
-------------------- 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.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Tree--I called the red cross donation nurse and she said exactly what your UCSF link said about lyme.
Here is what I wrote on another thread about this: I just called and asked what their policy was on patients wanting to donate who have had lyme diagnosed in the past. She said if you have been treated and you are "cured" and not experiencing any symptoms, you can donate.
I then asked if she was aware that there are new IDSA guidelines that say 28 days of ABX is a cure and that any left over symptoms are NOT to be attributed to lyme. SO what if someone shows up with those guidelines in their hands and says--i was treated and I still have symptoms, but according to these guidelines set by Infectious disease doctors my symptoms have nothing to do with ongoing infection or Lyme disease and I WANT TO DONATE BLOOD. She said according to their OWN guidelines they could not accept the patient.
This seems to me to be a great "teachable moment" for the entire nation. If we miss this one, we have missed a great oportunity for public awareness.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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groovy2
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posted
Hi All
Zman I have not posted a Lyme movie on the net yet because I want to make a Good video that people will watch--
I have tried 3 times to get people to contribute there story to a Lyme video -- not much intrest to make one yet-- I am going to try again tho--
I made a Lyme video that shows on Local TV- about 18 months ago-- it has shown about 300 times locally--
At the time I was so sick I was about 2 days from doing myself in--
I erased the copy that I had because I dont want to see it again--to painful-
Editing the show was the hardest thing I ever done-
Here is one of my silly videos that I posted on the net -Notice it has 143,000 views - 10 thousand more views than when I wrote the above letter at 3am this morning--Jay--
posted
I just wanted to reiterate my point on this...that what matters is not what IDSA says, it is what the red cross and others who directly manage the blood supply state. you have a valid point when you state that since IDSA claims chronic lyme disease does not exist, therefore I am cured and can safely donate blood.
But what you need to understand is that this is a POLITICAL as opposed to a SCIENTIFIC statement coming from IDSA. Read klempner on this subject..he refers to the patients in his infamous 2001 study as post lyme disease...but look, he excluded neuropsychiatric patients. later he referred to "treatment-resistant neuroborreliosis"...as if it were a separate entity from "lyme disease". and, in fact, what we have it is obvious is early inflammatory TLR-2 stimulated C6+ disease, {joint/skin manifestations} and late stage CNS disease which is the result of spirochetes hiding and even reproducing inside human CNS cells {remember, the CNS has a separate immune system, basically} and thus which are difficult to destroy via antibiotics and impossible for your immune system to recognize as non-self because they are HIDING inside your brain cells {which remain alive}. it's similar to a virus. this could be C6- and probably is, because VlsE expression levels are directly related to immune pressure from the adaptive immune system, and hiding inside live brain cells inside the CNS there would be no adaptive pressure, thus no VlsE expression and thus a possibly negative c6 titre over the long haul... a positive c6 seen in late stage disease is due to ongoing infection in other parts of the body...because of the breaching of the blood-brain barrier and overwash, you can even see a + C6 IN csf. BUT YOU CAN ELIMINATE THE INFECTION IN OTHER PARTS OF THE BODY, AND BE LEFT WITH C6- CNS DISEASE, since the abx and immune system are having a very difficult time recognizing and destroying the invader. and what is left in the CNS is not expressing enough {or any} VlsE over time to maintain a diagnostic C6 ELISA.
Now, wrt blood donation, this matters, because it is known from studies of closely related old world relapsing fever borrelia that such a residual brain infection can re-infect the blood stream in some instances. therefore, anyone with chronic lyme who donates blood no matter the abx therapy is endangering the blood supply.
it's disingenuous to refer to them {lyme and neuroborreliosis} as if they are totally separate diseases, however, since typically in infectious disease all manifestations of a disease fall under one overarching umbrella...eg...when we say syphilis, it means ALL STAGES of syphilis including GP. genital syphilis {stage 1} is PRIMARY syphilis.
anyone seriously interested in what is going on wrt US Bb s.s. strains needs to take a look at the old world relapsing fever literature...residual brain infection...maintenance of an infectious cycle in lice {insects} as opposed to ticks...reactivation of certain viruses in symbiosis with old world relapsing fever borrelia...etc.
those hybridization studies, for those who understand molecular biology, are screaming down the pipeline. it came from africa. and it came from europe. they'll try to lie and say something happened in the birds. but what we have here in the US is a combo of european lyme and african relapsing fever. and how did that happen.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
From bruce:
quote: you have a valid point when you state that since IDSA claims chronic lyme disease does not exist, therefore I am cured and cannot donate blood.
Did you mean CAN donate? because that is what the IDSA guidelines combined with the current regs at the red cross indicate. That you COULD donate because you have been "cured" and your symptoms are no longer attributable to lyme.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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quote: you have a valid point when you state that since IDSA claims chronic lyme disease does not exist, therefore I am cured and cannot donate blood.
Did you mean CAN donate? because that is what the IDSA guidelines combined with the current regs at the red cross indicate. That you COULD donate because you have been "cured" and your symptoms are no longer attributable to lyme.
yes, I'm sorry, you're correct...what I meant was "can", not "cannot". I'll try to edit.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
don't be surprised by the statements I made... everyone in the loop already knew that anyway about the old world relapsing fever component to Bb s.s.. I'm just expressing what hundreds of researchers believe but have been afraid to say, in some cases for years.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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posted
Bruce, please break up your 10-25 806 PM post!
There is important info I want to read/work with locally.
I was going to talk to our local Red Cross director and INTL. R.C. volunteer and hopefully the head DR. of our CENTRAL IOWA BLOOD BANK.
Will try to see if I can arrange a meeting with ALL VIPS present that I named, and present them with FACTS from us chronic lyme patients.
So, Bruce, please help me out here so I can organize for a future meeting with those folks who MAKE decisions and communicate with the higher up management folks.
BIG THANKS/appreciation Bruce. Bettyg
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Aligondo Bruce: reactivation of certain viruses in symbiosis with old world relapsing fever borrelia...etc.
those hybridization studies, for those who understand molecular biology, are screaming down the pipeline. it came from africa. and it came from europe. they'll try to lie and say something happened in the birds. but what we have here in the US is a combo of european lyme and african relapsing fever. and how did that happen.
and how did that happen?
You know how dontcha??
-------------------- 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.
quote:Originally posted by treepatrol: [QUOTE]Originally posted by Aligondo Bruce: [qb] reactivation of certain viruses in symbiosis with old world relapsing fever borrelia...etc.
those hybridization studies, for those who understand molecular biology, are screaming down the pipeline. it came from africa. and it came from europe. they'll try to lie and say something happened in the birds. but what we have here in the US is a combo of european lyme and african relapsing fever. and how did that happen.
and how did that happen?
.........................................
what I meant by the reactivation of viruses is that is was known in the 50's that certain old world relapsing fevers could establish a symbiotic relationship with viruses which resulted in re-activation of latent infection in mammals. an example might be re-activation of epstein-barr. I say might because I don't know for certain if that particular one was studied.
borrelia are the weirdest human pathogens known. they are very poorly understood, especially sensu stricto strains which have a wide range of complement resistance and which express a very high level of plasmid-encoded lipoproteins. moreover these plasmids undergo a very high rate of recombination {esp the linear plasmids} which results in novel lipoproteins constantly evolving during the course of an infection. this high expression level of lipoproteins results in greater inflammatory disease {ie, joint disease}, but since the antigens are constantly shifting {example:vlsE} they avoid adaptive immunity. meanwhile, the triacylated lipoproteins causing said inflammation via TLR2 pathways simultaneously are downregulating the TLR5 response to bacterial flagellin, which Bb uses to migrate {disseminate} through your body to its ultimate goal, the interior of human CNS cells. that's the Bb "fraidy hole" and that is exactly what fallon studies.
the fact that Bb s.s. causes a greater degree of arthritis in early disease is exactly reflective of the fact that it also causes a greater degree of late CNS disease. they tried to cover this up by creating chronic fatigue syndrome and fibromyalgia, since late disease is difficult or impossible to treat. on the other hand, if, instead of covering it up, they had spent the past 30 years {a} eradicating deer and {b} investigating novel treatment regimes for late disease, we would now be in a position where human lyme disease was very rare, and those who had late stage disease would obtain easier diagnosis and have access to better treatments.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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bettyg
Unregistered
posted
Bruce, a friendly reminder, are you going to help me out at all by breaking up the SOLID BLOCKS of text you've done in 2-3 posts here?
Remember, I'm trying to help all of us too by gettting a meeting set up; but I won't even try to IF I can't read the important info you ALL have posted here.
Thanks for your/OTHERS consideration. Bettyg
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