Willy Burgdorfer - Died of Parkinsons Complications in 2014

This is purely my own opinion, but I think they only diagnose cause of death to be Lyme if it's related to Lyme carditis - unless you have lots of money to fight them on it. Special autopsies and such are needed. They have to WANT to find the real reason, or they simply won't.

Is it common knowledge that he had Lyme Disease?

This sounds so dark but I was actually thinking about lyme and death. If we sign up to be organ donors can we write to a lyme research facility and ask to be donated for that. I would seriously want my brain (and the rest of me) to be autopsied for Lyme if that helped move things along. Not that I hope this happens any time soon, but wondering how it does happen.

I have thought the same thing! So much blood must be infected. Actually that may be a very good way to get people listening.

Yes, you should NOT be a blood donor or an organ donor any longer - even after you have healed as those that will need those organs/blood are not exactly healthy individuals in most cases which means the bacteria can reactivate and cause them to have Lyme.

Actually, it's not been a good way to get people listening! I've been practically shouting this from the rooftops for the last few years and guess what? No one cares/believes it!!!

The Red Cross does NOT screen for Lyme - they ask on a questionnaire if you have had Lyme - well we don't know until we know! And seeing as how many of us are having to figure this out on our own, or being told by uneducated doctors that it's negative and we have nothing to worry about - or that it's a false positive, you know that there are tons of people donating blood contaminated with these infections.

My husband needed to have blood after a really severe gastro bleed several years ago. We talked about it and he agreed to have the blood and himself tested for everything we could think of before he would take it - at least we would know. Fortunately, he was able to get out of having to take the blood (took time off work to build up his own blood supply instead) and so we dodged that bullet!

I have thought about how many blood/organ donors there are that are diseased and don't know it. Scary, scary stuff. I know I don't do those things any longer.

... and Traveler, you are right that no one care/believes. I get smacked around by friends that are blood donors that ask me if I give and when I say no, they go crazy. I tell them it would be careless and wrong, but they can't figure out that Lyme is a transmittable bacteria. I guess thay think I am making it all up... sigh.

People can be so mean. I am so sorry 3Humped.

I am not a donor any longer, nor do I give blood. And there are many alternative to do beside taking a blood transfusion. I will do blood enhancers first. But, I do have a close huge family and would trust any of them to give me blood.

Heck, I am healed/remission and hubby and I still do not kiss with an exchange of saliva. No unprotected sex and I use a heck of a lot of spoons while I am cooking to taste test and throw into the dishwasher. I won't let him eat off my plate if my fork has touched it either.

When I get restaurant food, I immediately cut it and put it on another plate so I do not contaminate it. That way if we take it home he can eat it.

I am super cautious. I do not want him to go through what I went through.

Agreed. Life is sure different for us, isn't it?

I think I used to be bugged by the comments, but honestly I do what I need to do and I understand they're simply uninformed (or in denial that something like this could be true).

Most people do not care about any disease if they are not effected. people are afraid of the big C disease. Lyme is not in the list of commonly known disease. Heck zika, west nile viruses, mad cow disease and even ebola have gotten more publicity than lyme has got in 30-40 years.
I think it is all how you "market" a disease, because this is how things move about in our world today. Publicizing a disease well is the platform to fundings for research, public awareness....and fear factor has a lot to do with it. Genome testing and breast cancer diagnosis and prevention is an example of how well a anti-cancer campaign can be thought out.

Interestingly enough lyme disease is treated by our society the same way it has harbored inside our bodies....silently and slowly and without us knowing. The disease caused by this malefic bacteria has not being studied long enough for us to demand a "cure" or an effective treatment. Some of us will die hopelessly trying to find a way to make it regress in our bodies. Personally, I think that until lyme disease is treated like a REAL problem we will never get respect as victims from our healthy peers nor hope for ourselves to find a successful treatment.

If someone ask me what I would like to be in my next life....... a spirochete...
SIGH :-( ......unfortunately I do not believe in after life.

A very relevant discussion ---

From "Cure Unknown"
Burgdorfer was dissecting an infected rabbit and accidentally punctured its bladder, which splashed urine in his eye(s), which is how he was infected w/ lyme. Soon he developed an EM rash under his arm and took penicillin, the rash returned so he was placed on tetracycline and the rash didn't return. But then academicians, due to the lyme politics at the time (80s - 90s) who were paranoid about what they saw as paranoia about the lyme epidemic (in New England) decided to revoke his dx. Doctors got involved and dug up his old files and claimed that his "antibodies were too low" for him to have lyme.

IDIOTS.

A few years back word got out that the blood supply isn't being tested for most of these TBD. Not a surprise - it would bankrupt it. At the beginning of the HIV crisis when it was finally understood what it was and several people had been infected through the blood supply, testing was investigated but deemed so expensive it would also bankrupt hospitals who offered to pay for it. I think a little progress has been made on that front but not good enough.

It's now well-known that babesia is prevalent through the blood supply. There is no reason to assume babesia is in the supply, but lyme, rickettsia, bartonella, etc. isn't. The blood supply is already so precarious that the last thing .gov wants to do is start admitting all of the things they're not testing for.

I totally agree with others who have urged TBD patients to NOT donate blood or organs. This is pretty important. MacDonald is a pathologist but like Traveler said - it is almost impossible to have a thorough enough autopsy done to investigate lyme but I think there are some organ repositories out there - but you not only donate your organ, you have to pay them to receive and study your organs. And the likelihood of the pathologist at your County morgue accepting another pathologist's findings is probably remote.

I also personally agree that half of the Parkinson's, Alz, MS dx we see are based on an uncontrolled microbial infection. These are not diseases where cancer cells are easily identified - these diagnoses, just like lyme & co, are based on a group of symptoms and that is how they are dx. It's very much like a clinical dx of lyme & co.

Originally, MS also was stigmatized as psychosomatic in nature until the MRI was developed and white matter on the brain could be seen. Then, all of a sudden, these patients were believed. MS was also originally considered a bacterial infection... but when the autoimmune issues because "popular" and Big Pharma started developing very expensive drugs that suppressed immune function that reduced symptoms... then MS became an autoimmune condition.

No, I don't think any of these associations is a coincidence.

-p