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» LymeNet Flash » Questions and Discussion » Activism » Need volunteers willing to talk about whether they ever donated blood

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Author Topic: Need volunteers willing to talk about whether they ever donated blood
Sherrig
Junior Member
Member # 22785

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I am a student at Weber State University and doing a research project, trying to get Lyme disease questions put on the National Blood donor registry.

My father has chronic Lyme and has motor function issues among other things.

While he has never donated, he was misdiagnosed for probably 20 years and during that time would have been able to pass it on to others, which in his words, "he wouldn't wish this on his worst enemy".

The medical community outrages me, and while this is not going to change the world, I am hoping for a little acknowledgment for all of those who have had to deal with this terrible disease.

[ 10-12-2009, 09:13 PM: Message edited by: Sherrig ]

Posts: 2 | From Utah | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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welcome sheri [Smile]

many of us have severe NEURO lyme and can not comprehend or read long, continuous text like yours above.

please edit and break it up into SHORT paragraphs and double space between them like i'm doing here.

please use my guidelines below; big thanks [Smile] hugs


Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!

The following is some links that may be helpful to you:

Lyme Disease and Co-Infection Symptoms
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81386


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" http://www.ilads.org/lyme_disease/treatment_guidelines.html


Pages 17-19 discuss Adult and Kids Treatments
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/80440?#000006


Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


``Making the most of your LLMD visit''
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005


New Member Learning links:
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/29917


Link to Turn the Corner Foundation: Good info and contacts for finding a good LLMD. http://turnthecorner.org/lyme-disease-quick-facts.htm


People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

This explains the medical politics around Lyme, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/


You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. www.igenex.com http://www.frylabs.com/; http://www.clongen.com/; http://focusdx.com


Dr C's Western Blot explanation is discussed here:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=042077


ILADS
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases. www.ilads.org

Under Our Skin Lyme Disease documentary www.lymediseasefilm.com

Herxing Reactions: http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=041517

For the Igenex Western blot IgM and IgG blood test drawn on M, T, or W. Check current $$! Oct. 2008 Price List ... info only. Prices have increased on some! Call 1-800.832.3200 for current prices.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/78648?#000003

They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure to download Igenex's required form. MD, DO, ND, AC, DC are all fine** must sign, date, and show diagnosis code on there why he's ordering the test.


Optional tests include: co-infection panel for your area of country and PCR whole blood

Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.

Get copies of all of your special bloodwork.

Overseas instructions for sending to Igenex/Fry Labs (2-23-08)
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=063751


Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.

For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.

You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.

Go to left hand corner and mark box to receive `all replies', and click edit send.

Thank you for posting in a manner that makes it easier for all to read and help others.

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kam
Honored Contributor (10K+ posts)
Member # 3410

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YES> I donated blood when I was well enough to work and before I was dx with lyme and company.

It was something my work places did at least once a year.

Scary.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
lakes592
LymeNet Contributor
Member # 18905

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I say the exact quote as your dad and am so thankful that I have never donated blood. I was all set up and ready to in high school once until I saw a girl turn ghostly white and start convulsing next to me. You couldn't get me outta there fast enough! Good for you that you are speaking out about this huge problem that many of us worry about!

Take Care,
Ann

--------------------
If you keep doing nothing...nothing changes!

www.underourskin.com

Posts: 579 | From NH | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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sherri,

thank you so much for breaking that up so i/others could read.

fyi, i donated for 15-20 years NOT knowing i was misdiagnosed for 35 years by 40-50 drs, and actually had chronic lyme since xmas 1969 !!!


let me give you some brief history i've found out since i was correctly dx 5 yrs. ago.

when i learned i had lyme, i called out local hospital to tell them i have chronic lyme and had donated for 15-20 years thinking they might have some records WHO RECEIVED MY BLOOD all those years of my yearly giving ... nope!

frankly they did NOT care! weren't concerned in the latest.

they also said they go by what our USA defense dept. states ... if you don't have any active symptoms within ONE YEAR I THINK was said, you can donate blood !!

you could call the american red cross to find out the specfic definition.

also when i donated blood for my new hip surgery 2 yrs. ago, no lyme questions on their but MALARIA is covered, and babs/cat disease is on there.

bart/babs i get mixed up all the time so i may have again due to 40 yrs. neuro lyme.

i also felt that fibromyalgia & chronic fatigue pain should also be added to questions.

good luck on your project.

in pj langhoff's book 2 of 3 of IT'S ALL IN YOUR HEAD, is a hospital patients story of how she was in the hospital for OTHER things, got donated blood and got LYME DISEASE FROM IT!


please read all thru this entire post also ...


DONATING BLOOD, ORGANS, TISSUE, EYES, --- THINK AGAIN! NO NO by Melanie Reber 12.03

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=021835

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Tincup
Honored Contributor (10K+ posts)
Member # 5829

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So sorry to hear about your dad and his condition.

Yes, I had donated LOTS of blood (gallons over a few years). I was infected and did not know it. Have multiple tick borne infectious diseases.

Recently, after telling the local blood mobile I couldn't donate and why... I was trying to share Lyme info with them only... they STILL kept pushing me to donate while I was there.

They just don't get it.

Good luck with your project.

And thank you!!!

[Big Grin]

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

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Sherrig
Junior Member
Member # 22785

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Thank you all for your honest stories.

In a few weeks I will be sending out a survey it is only 6 or so questions.

The information from the survey will be gathered and compiled for the research.

I will send it through the private mail, if interested please fill out and send it back.

Thank you all, I pray for a medical community that opens their eyes to all of this.

Posts: 2 | From Utah | Registered: Oct 2009  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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sherri,

i look forward to receiving it.

what is your deadline date?

the reason i'm asking is more folks may come along reading your subject line and wish to particiate.

is it possible to post also your 6 questions here in case they want to PM you back with the results?

food for thought ...

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RDaywillcome
Frequent Contributor (1K+ posts)
Member # 21454

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Many years ago, I went to donate blood...but ended up not, because of a fever, I didn't know I had.
Posts: 1738 | From over the rainbow | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
Robin123
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Thx for doing this, Sherri - it's an extremely important topic - any interest in posting your six questions here? And yes, how long are you collecting some info?

I just recently spoke with someone who donated over the years, not knowing they had Lyme. They said the blood center was not interested in finding out what happened to the blood since they felt they might be opening themselves up to liability.

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Pinelady
Frequent Contributor (5K+ posts)
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Yes, Thank You. Very important topic.

Blood donations should be top of the list of

investigations. I would like to think they have

done this. Babesia is the only

thing Wormser said needed changed in the IDSA

guidelines. Keep up the good work.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
   

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