Lyme Disease: Stories From the Front Lines of an Epidemic – Nonfic Insert 1 – Some Lyme Paradoxes – Sam S.

The Red Cross Blood Donation Disconnect

It is confusing as all get out to me that the American Red Cross, bulwark of public safety, and the biggest source of US blood donations, absolutely will not accept blood from patients who have had babesia and in the majority of states will not accept blood from people with Lyme Disease.

Also a bunch of states branches of the Red Cross forbid individuals with those diseases from acting as organ donors.

Most interesting is that the American Red Cross does recognize chronic Lyme…a direct qoute from their blood donations requirements page reads…

Lyme Disease

Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed. Those with chronic Lyme disease are not eligible to donate blood.

Is it not weird then that the Red Cross recognizes this terrible disease and is trying to keep it out of the blood donation pool when many of the hospitals and clinics that receive this blood do not receive Lyme patients at all on the grounds that the disease does not exist?

IV medications are the only cures for some forms of Lyme but only Infectious Disease Doctors can prescribe them and they do not believe in Lyme.

This here mayhaps be the cruelest thing as it guarantees that in most states and most countries people like me with neurolyme can’t get the most effective treatment for our disease and are thus forced to make due with various stop gap measures until we can either travel or move to a location where these treatments are available.

It’s a sad fact that most of us would have to go to Europe in order to get this treatment although there are a few doctors, five or so in the US that offer this treatment to those who can pay for it as no insurance covers it, and a few doctors and NDs in British Columbia will be offering this service soon.

As this is still a very risky thing for US and Canadian doctors I will not be listing any sources for this here. You can try some of the websites in links for private referrals.

Since most of us can’t go to Europe or get insurance, this means a lot of us are just going to die and die crazy.

Now tell me how that ain’t wrong.

Activist/ “terrorist” vs “Touchy feelies”

But the most messed up thing about the Lyme community is that even given all we face, we are an arguing bunch split into several groups. We tend to go one of two ways with a few meandering offshoots.

There are the activists who are in general good solid folks who are very tired of being treated as if they were crazy, lazy, or simply troublesome. These individuals sign petitions, write letters, go to rallies, create art, music, posters, and websites. Their primary goal is to peacefully gain awareness for their disease and thus treatment for it.

Then there are the “terrorists” who are angry activists who feel, perhaps rightly that these rallies are ignored by the bigtime media, that the petitions will never succeed against the big pharma lobbies, and that the government may even have created Lyme as a bioterror weapon and therefore has no interest in ever finding a cure. They create highly angry and sort of dangerous websites, foul mouth and cuss word bomb social media websites and groups, news reporter types, and talk – I hope they just talk – of far crazier stuff.

Then you have the touchy feelie types who while they do not themselves rally or do advocacy work will pass out brochures or donate to various activist causes in some way and offer you prayers or good mojo.

And last, there are the folks who just live their lives with Lyme only sharing their stories if asked.

There are other branches – book writers, story tellers, craft people, self taught biochemists and nutritionists, researchers and so forth but they are not easily to pin down because they mix and match their beliefs with all the other folks.

That Lyme disease suffers should split themselves into factions is both unfortunate and ironic since they already have the whole of Medical Officialdom against them.

There are examples of all these folks in these posts and since this is about them and not the politics I’ll leave the moral judgments up to the readers but I felt that this clarification was needed.

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