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» LymeNet Flash » Questions and Discussion » General Support » people with fibro encouraged to give blood

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Author Topic: people with fibro encouraged to give blood
shannon12
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This is really really bothering me. I belong to a few fibro groups and forums before I found out that I had chronic lyme.

So just today, I found there are members that are saying they are giving blood and encouraging all the members to give when they are feeling OK.

While not every single one has lyme disease, most do that's just the way it is, and even if they don't, they most likely have other infectious components that we may not know is transfered.

A few months ago, I just posted a question asking who here has been tested for infectious diseases , I first mentioned virus like ebv, herpes 6, then pnuemonias and lyme. I got not one response.

Also during my suffering all these years even before I knew I had lyme I would never donate because I felt like death so I was always too sick anyway.

These same people are donation when they have symptoms of air hunger and bruising and babesia is running wild through the blood supply?

But you can't tell them that because they'll be offended. They're offended that you've gone through the exact same thing have the tender points and all , the classic "fibro" symptoms but it turned out to be lyme instead.

And your just trying to help them not progress and offer some of kind of hope with aggressive treatment .

Posts: 229 | From Forty Fort, PA | Registered: Feb 2012  |  IP: Logged | Report this post to a Moderator
map1131
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Wow, scary thought. Yes, let's encourage people with an illness of unknown origin/cause to go out and give blood?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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linky123
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You are right. Common sense would tell us that we shouldn't be passing along whatever is making us sick.

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'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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Lymetoo
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That's horrible!! They should know better!!!

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

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randibear
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I tried to tell somebody on a fibro board about lyme and promptly got told off but good. Said I was scaring people and on and on. I mean they got reAlly angry. I left..

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do not look back when the only course is forward

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Robin123
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If you let us know which fibro groups these are, I would be willing to go there and let them know that my fibro of 25 years turned out to be actually an infectious disease, and so has it been for many others with the fibro diagnosis, including people interviewed in the Under Our Skin film.

Perhaps others who are up for this work could go there too. It's important to keep it personal, as in "my" fibro turned out to be Lyme disease, rather than tell them theirs is. That's where I've gotten flack.

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droid1226
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it doesn't matter. i tried to donate before i knew i had lyme and it got rejected. they were nice enough to send it in a letter that said "THIS IS NOT HIV", but an infection.

there was no trouble with lyme detection when it comes to the red cross.

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Keebler
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-
For anyone new to this issue:

For anyone who has or has ever had lyme, or any other tick-borne infection:

NEVER DONATE BLOOD - for life.

There are many other ways to help out but never, ever give blood or any blood products. Never donate tissue to anyone.

The Red Cross will not accept anyone who has ever had Babesia, but they have not put up similar guidelines for lyme.

So we have to know this because they don't.

And, because we know that lyme, other tick-borne and other chronic stealth infections (mycoplasma, Cpn, etc.) can cause Fibromyalgia, Chronic Fatigue Syndrome, and some cases of MS, ALS, Parkinson's . . .

anyone with such conditions should also NEVER donate any blood or tissue.

Do NOT plan to donate organs. Be sure your family knows this. Firmly.
-

[ 11-30-2012, 08:58 PM: Message edited by: Keebler ]

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lpkayak
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it worries me about donating organs too...when i changes my liscence they suggested strongly i check to donate...i said no-i wouldnt want to give what i have to anyone...she-not a doc-the dmv lady assured me they tested and only used good ones

its good to hear someone got rejected-i never heard of that

and shannon-many of us have many of the things you asked about in the first post...it is very common. plus i think a really high % of population has ebv wheter they have lyme of not

there are a few ppl on ere who know more than others about virus stuff-testing and supps that help-and meds

i did test pos for a virus once for the first time late in life. regular doc said no tx. i took a bunch of anti virals and in 6 months tested neg and i have never been pos again...i check every year

if you use the search button or even start another thread on virus' you might get some discussion...it might have been bad timing last time.

--------------------
Lyme? Its complicated. Educate yourself.

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shannon12
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oh ok I didn't know they were starting to screen for this.

randibear..yes I am leaving all of them too, I always say everything in the nicest way and not too pushy but they just don't respond, I would feel better if they challenged me and started asking questions but like you I'm done.

I wish someone would have mentioned this to me all those years, but no one did, the only mention was when I went to the fibro and fatigue center and the doc there was also an llmd , they tested came back only one band positive and was not treated so I really had no reason to question it.

But I was always on the internet and found different causes of lyme like chronic infections and stuff but none of them ever mentioning lyme.

Robin, yes I can give you the group, I will message you.

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Keebler
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Shannon,

I'm not sure why you attend a FM group at all?

Are you saying that since you just had one positive band on the lyme test that you don't think you have lyme?

Even just one positive band can, in fact, indicate lyme. Even a result with no positive bands cannot rule it out.

That "LLMD" at the Fibro center was no LLMD at all if he did not explain that to you.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease
-

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Lymetoo
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quote:
Originally posted by shannon12:
oh ok I didn't know they were starting to screen for this.

-
That doesn't mean they will find it!!!! Keebler is right. None of us should ever donate blood or organs. PLEASE!!!

ESPECIALLY if you've had babesia!!!

I donated when I was in my 20's and they hit a nerve. I would not let anyone touch that arm with a needle for the next 25 yrs!

So, thankfully, I never donated again. I'm SO GLAD I didn't!! I could have given a lot of people Lyme and babesia.

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

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randibear
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you know my niece got sexual herpes from a guy that never told her.

there are people out there that know they have diseases and still spread them.

personally, they should be charged with a crime. they are destroying lives. killing people and they know it....

harsh, yes, but look how we live and tell me you would donate blood knowing what it would do to people.

who in their right mind would do this?

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do not look back when the only course is forward

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Lymetoo
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They HAVE charged some people with a crime for purposely spreading AIDS. I've heard of the cases.

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

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LymeLearned
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Holy crap! I mentioned this in my "7 lyme facts" video, as it distrubs me greatly. WHY wash our hands and handle food carefully if we don't believe in pathogens? THE moment I started feeling ill, I had a sneaking suspicion it would turn out to be some infectious disease, and just to be safe, I stopped giving blood. BUT...there was the time before I got sick enough to ponder...like those early years when I thought I just must be lazy! God only knows...

--------------------
"SEVEN LYME FACTS THAT COULD HAVE SAVED ME" VISIT ME AT:

http://www.youtube.com/TickedOffLiterally

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Lymetoo
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Shannon.. I hope those people know that tons of us here were once diagnosed with "fibromyalgia."

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

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beaches
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The scariest thing is that there are many asymptomatic people out there who would test + for multiple coinfections. I used to be a member of that club.

So people who are asymptomatic, yet would test + for a tick-borne disease (unbeknownst to them) are still blood and organ donors.

My only hope is that technology becomes available to somehow zap any pathogens in the blood/organ supply. There is such a great need for blood and organ donation.

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Robin123
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Shannon - you are welcome to pm me about the group. And I am inviting anyone else here who would also like to discuss this situation with the fibro group, as these folks are spreading illness in the blood supply -
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hopingandpraying
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Fibromyalgia is NOT an illness, but symptoms from a bacterial/viral infection.

Why on earth would anyone donate their blood?!?!? To reinfect others????? No way!!!

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shannon12
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@Keebler- late to respond,, but I was on fibro groups because that's what I was told I had before I found the lyme two years ago. I was tested for lyme 8 years ago and was positive on band 58 only. I know now that you can be treated with one band only.

What I'm saying is no one told me that at the time. And no he wasn't a very good doc at the least he should have retested and send my labs to igenex and paid attention to my specific symptoms. But he's not the only doc that does not consider this a significant band, my new doc considered a top notch lyme doc also does not consider this band significant.

My new doctor probably would have done this 8 years ago if I had suspected lyme myself I would have been seeing this doc 8 yrs ago. however I was young and had no idea what happened to my body and I was told I had fibro by several docs. I had no reason to question. I never once heard the possiblily of lyme from anyone until he ran the test and told me I didn't have it and that was the end of it.

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shannon12
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And since then i was reinfected almost two years ago and that's when I found out I had lyme. That's when I had the very positive test, almost every band.

I just meant at the time that was the only band I tested positive for and he did not treat me for it or investigate further.

I"m was just trying to go on there and figured if I could help one person not go through this hell I would do it, because in all my time spent on researching fibro nothing about lyme ever came up. But they don't want to hear about it so I'm not on those groups anymore.

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Keebler
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-
Shannon,

thanks for clearing that up and I'm glad you are free of the in the box thinking of the fibro group. Though, so sorry that you've had to go through so much - as many of us have here so that's why we jump on to try to make sure you were not still thinking this was just "fibro"

I know of several folks who just won't leave that diagnosis no matter what. It's so sad to see how much time is wasting and suffering endured because only a few doctors are really learning what they should - and only a few are courageous enough to move foreward.

I also gave blood years ago - wish I had known then. But, hey, new information, better choices.

Good luck.
-

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Robin123
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Hi Shannon - I think a lot of us should go to that site and tell them not to donate blood - am pming you -
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Lymetoo
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Don't feel badly about not knowing. I had "FM" for 20+ yrs before finding out it was Lyme.

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

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susank
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Wait a minute. My thoughts.

Correct me if I am wrong - but donating blood where only the plasma is used - for example to make IVIG would be a good thing.

For IVIG the blood/plasma is cleaned of pathogens/whatever - leaving just the antibodies.

I don't quite understand how IVIG works - but I think I would rather have IVIG that had lots of antibodies as listed above - rather than measles antibodies.

About a year I posted a URL about the antibodies in five IVIG brands. Very interesting.

As in folks that have Herpes 1/2 - that were on IVIG had less outbreaks.

In fact there are hyper-IVIG products - with high antibody levels to things like Rabies - in case someone is bitten.

The URL is tricky - I can give the words to use to do a google search - if someone could do a Tinyurl or screen shots to post here. I don't know how to do that.

It might change minds on donating blood.
I think it might encourage folks to donate plasma.

There is always the threat of IVIG shortages.
More donors always needed.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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susank
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Here are the keywords for the google search:

Krause medicine IVIG transfusion myhealth

If found please note that the top click-on PDF choice does not always go directly to the article to which I refer.

But the article does come up with the "quick view" choice. Not as clear - but at least there.

This article with the info and the tables showing antibodies is the only one of its kind online.
And it is over ten years old. Who knows what the antibody spectrum would be now - with new diseases.

I don't know - would IVIG with high Bb levels help folks that have Lyme? IVIG with high Herpes levels seems to really help folks that have Herpes outbreaks.

I'll try to find more info about plasma donors.
They ask for healthy donors. And recovered/recovering donors.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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droid1226
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Go ahead, donate your blood...eventually lyme will hit action bias when enough people get it and something will be done. Sad that it has to come to that, but otherwise, exposure just doesn't happen. It'll happen naturally when half the country is sick.(My blood got rejected in Ohio, before I knew)

Susan, I can post a pic on here. I followed the link. Not sure what .pdf you are referring to.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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susank
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Droid - there should be a few pages including two tables - one showing viral antibodies - one showing bacterial antibodies.

The keywords should pull up the article.
The PDF choice is the "clearer" one but does not always work. Or try the "quickview" option. *

The article is titled, "In vivo antiviral and antibacterial activity of commercial intravenous...". (I think). Thanks.

*to add - the "file format/adobe acrobat quickview" option

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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droid1226
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http://www.keepandshare.com/doc/view.php?id=5724073&da=y

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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randibear
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i was diagnosed with "myositis" er, i think that's how you spell it, early in the 70's. then later fibro.

it was lyme...

and yes people will cling to that fibro thing with all they have, even to being closed minded.

that one board i left there were several who were downright vicious about it.

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

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shannon12
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another thought, how are they catching all the cases of Babesia when blood tests are not reliable, are they using tests we don't have access to?
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shannon12
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nevermind, lymetoo answered this in a previous post.
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susank
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shannon - good question - and where did lymetoo answer it. ie babs testing.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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