posted
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
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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 Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
You are right. Common sense would tell us that we shouldn't be passing along whatever is making us sick.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
That's horrible!! They should know better!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
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..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
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.
Posts: 13116 | From San Francisco | Registered: May 2006
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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. Posts: 13712 | From new england | Registered: Feb 2004
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posted
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.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
posted
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:
posted
Shannon.. I hope those people know that tons of us here were once diagnosed with "fibromyalgia."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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posted
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 -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
@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.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
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.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi Shannon - I think a lot of us should go to that site and tell them not to donate blood - am pming you -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Don't feel badly about not knowing. I had "FM" for 20+ yrs before finding out it was Lyme.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
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 Posts: 1613 | From Texas | Registered: Aug 2009
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
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.
posted
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?
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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