Where to donate our bodies for Lyme Research?

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To learn more about how to donate tissues from your body for Lyme research watch this video and email donatebrain@gmail.com.

Jenn Robertson contacted ILADS to find the answer to this question and this is what they responded: 

“Thank you for contacting ILADS.Dr. MacDonald is no longer accepting donations. Dr. Fallon at Columbia accepts slices of brain tissue. Contacting NIH is another possibility.

Additionally, you can contact the following organizations:

Lyme Research Alliance
lymeresearchalliance.org

Body Donation to Science and Medical Research
This company accepts bodies and if you visit their website you will see how to go about donating your body to them.

Thomas Grier says, “Columbia accepts bodies but you have no say in how the body is used. There are numerous brain banks for dementias, MS and Parkinson’s studies to donate to. I am the only ones that get testing results back to the family and use specific stains for borrelia.” So you can contact them on Facebook: Click on Thomas Grier.

 

Other then that, we don’t know. It seems that you pretty much have to pay to have your body shipped after death for research to different research facilities and then you really have no say in what they are researching.





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6 thoughts on “Where to donate our bodies for Lyme Research?”

  1. My husband began getting sick at 38yrs old (16yrs ago) – he’s now just 54 (with the body of a very ill, 80yr old). But nothing presented itself “enough” for docs to know what to do. My husband used to be a golf course supt; he was a perfect candidate for Lyme’s and his symptoms were classic Lyme. He was tested for Lyme in a doc’s office and, of course, it came up negative; and so from then on, Lyme’s was NEVER considered. For 16yrs, they’ve labeled my husband “Common Variable Immuno-deficiency”. Docs have been chasing their tails trying to band-aid the conditions and symptoms, while my husband has been slowly dying and suffering. Four years ago, I DID go to independent Lab for blood and sent to IgeneX in California. Tests came back positive for Lyme. Docs will NOT take me seriously. My husband’s liver is now failing. He’ll most probably be dead in 3yrs. This “illness” has torn our family apart. Their father’s been sick since my daughter’s were 5 and 3. We’d like to donate his body to Lyme research re: undiagnosed and untreated Lyme (and co-infections) in a body. Open him up and research the spirochete’s unchecked journey inside him…to help others by EDUCATING docs on what to look for and know re: early treatment. Any suggestions for a wife/caretaker/mother who is, by now, overwhelmed and exhausted. I’m now making a checklist to keep my head going re: what to do on the day I finally find my husband dead in his bed. I’d like to donate his body to Lyme’s. Thank you.

    1. Hello, I know this is an older post, but if you happen to see this and can send me a note
      cara dot e dot brady at gmail. I would like to understand more, I believe your husband sounds exactly like my father.

  2. There was no mention by Dr. Grier regarding cases of ALS. In the last 20 years I would hope there were ALS patients who donated their brains. Were spirochetes discovered in any of the ALS brains donated? For someone doing this as long as Dr. Grier has been, one would reason to believe there would be all sorts of data… more than just a few slides? My sister has advanced ALS and tested marginally positive for Lyme on Igenix test. She is convinced it is the spirochetes that have eaten away her brain. She’s willing to donate her brain to prove herself right. Can you help?

    1. Hi Greg, I know that Thomas Grier is specifically studying Alzheimers right now. Not sure what info he has on ALS but he is very willing to talk/skype with people to talk about his research if you reach out to him. Here is another video he made on the findings of his autopsies. http://whatislyme.com/be-kind-for-lyme-interview-11-part-1-dr-tom-grier-what-autopsies-tell-us-about-lyme-disease/ Here is a post on how to donate tissues to him for research. http://whatislyme.com/guidelines-for-brain-and-tissue-donations-for-lyme-patients/

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