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Posted (edited)

Wow. Powerful video. Thanks for the post.

 

Our Lyme doc dx my children, my husband and myself just recently.

 

She urgently advised us to NO LONGER DONATE BLOOD and to REMOVE ORGAN DONOR DESIGNATION on our driver's licenses.

She said that the U.S. blood supply is huge factor in the spread of Lyme and other TBI.

Edited by mdmom
Posted

Wow. This is interesting....would that impact IVIG treatments, too. All those PANDAS kids getting IVIG, then finding Lyme???

 

 

She urgently advised us to NO LONGER DONATE BLOOD and to REMOVE ORGAN DONOR DESIGNATION on our driver's licenses.

She said that the U.S. blood supply is huge factor in the spread of Lyme and other TBI.

Posted

Wow. This is interesting....would that impact IVIG treatments, too. All those PANDAS kids getting IVIG, then finding Lyme???

 

 

She urgently advised us to NO LONGER DONATE BLOOD and to REMOVE ORGAN DONOR DESIGNATION on our driver's licenses.

She said that the U.S. blood supply is huge factor in the spread of Lyme and other TBI.

I was told by daughter's llmd (Dr. J) that ivig/pex was ok. The concern is with blood tranfusions. I don't know...scary. There are two adults in the lyme support group I attend receiving ivig to help with neuropathy lyme. My daughter and I are both positive for lyme - I did not have any infusions.

  • 3 weeks later...
Posted

I haven't watched the video yet, but you can buy tick twisters from Amazon. They are pretty inexpensive. There are different kinds, so see which you like the best.

Does anyone know if the tick twister shown in this video is still available? Anyone own one? It looks so easy to use. thx

  • 2 weeks later...
Posted

 

"Seven Lyme Facts That Could Have Saved Me!!!"

 

edit- ending is so sad!

 

 

Hello, Periodically I google my "7 lyme facts" video to see if a google search for "7 lyme facts" still gets people to it, and to see how my video is coming along. When I saw your comment, I was moved. Thank you. And thank you for taking an interest and passing this along. Before I became ill, I was an inpatient psychiatric nurse for children in what I now know is one of the nations TOP HOT SPOTS for Lyme. Now, I wonder how many who came to us with facial tics, OCD, psychosis, etc. could have been helped if we'd explored more possibilities. I saw "Saving Sammy" on the Today show, while researching mental illness and microbes to create my video--and I was floored. I can't even count the number of kids just like him who got absolutely nothing but symptomatic relief (and institutionalization), as the disease progressed. I am eternally grateful for the internet and the good people who come together here.

 

As for my case, over two years since infection, I am STILL in treatment (thank God). Every time my doctor tries to stop, my kidneys begin to fail again. Funny, it is widespread knowledge in veterinary circles that renal failure is a common lyme symptom in dogs, but scarcely publicized in humans. And yet, when science wants to know how something will affect humans, they round up a whole bunch of dogs, put them into cages, and study its affects on them. Other lyme patients have experienced renal failure, but I also wonder how many renal patients have no idea they have lyme.

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