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.
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
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.
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!
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
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.
Posts: 13069 | From San Francisco | Registered: May 2006
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Frequent Contributor (5K+ posts)
Member # 18524
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
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