Man Dies From Lyme Disease: 'No One Wants to Talk About It'

New article in Huffington Post

www.huffingtonpost.com/david-michael-conner/man-dies-from-lyme-disease-no-one-wants-to-talk-about-it_b_8895678.html

Exactly - the majority of those that don't live with the possibility of chronic Lyme don't wish to be bothered by the controversy most of the time, so it's easier to believe that they are not as risk in joining our little group of chronic Lyme sufferers.

This is so sad. David leaves behind a wife and twins. Here is an article written a year ago and at the bottom is a great comment by a reader.

www.valleybreeze.com/2014-12-17/cumberland-lincoln-area/geraghtys-doctors-pushed-als-diagnosis-ignored-lyme#.VpE-dVJnF2A

gkamom said...

Sometimes I think it comes down to many doctors think the MD after their name is actually spelled GOD. They don't like to be questioned and don't like to be proven wrong.

Not all MDs are like this. My GP was suspecting there is something more going on. She ordered lots of tests and was going the right direction: Toxoplasma, Listeria, IgM CMV , IgM EBV. She was very close, but somehow Lyme does not ring any bells, and for a good reason. Later after i got my positive WBs and DFM, she told me she has had one single other case of lyme in 33 years of practice.

Of course she has had many other people that were misdiagnosed, i don't doubt that, but since there is no screening of this disease and since the symptoms are so vague, i think we have reached a limit of what a human diagnostician can achieve. Just looking at the Horowitz questionnaire, it's pretty difficult to memorize these things. What we need with lyme is : data science + differential diagnosis + screening of the population. I mean even if they develop a test that is 100% accurate, the GP still has to order it, no? Otherwise it is useless. Basically anyone that comes in with flu like symptoms should be screened for lyme. There is simply no way to tell early, esp with no bulls eye rash.

gkamom said...
Same reason why so many of us have been diagnosed with Fibromyalgia. A diagnosis stops most people from looking further therefore we stop bugging our doctors.

I had to argue with my doc for 3 months just to get him to sign the order. I think he did it just to prove me wrong. It backfired when I came back with a positive test for an active infection. Still didn't like the answer. He actually wrote in my record that a repeat test would only show that at some time previous I had been exposed. Repeat test? I guess somewhere along the way he went from "nothing in your record indicates Lyme" to "an earlier infection wouldn't explain your symptoms". I never said that i had been tested for Lyme. Ever.

Sometimes I think it comes down to many doctors think the MD after their name is actually spelled GOD. They don't like to be questioned and don't like to be proven wrong.

This was my experience as well. I even had a doctor yell at me - at the top of their lungs!!- while I was in his office getting my test results for something that if I didn't start MS treatments that day, I would die very soon. Not something you should tell a mother of 2 young children - and definitely NOT when they are screaming it at you.That's actually what scared me off - his yelling, otherwise I might have been convinced because I didn't know that there was "no known cause" to MS.

I had other doctors tell me that there were "organs in there" when I asked what was there as I pointed to my spleen and said that it really hurts a lot. I turned around and walked out of that appt and office. If that's all they can tell me (or feel I need to know) - I surely am not putting my trust in them!!

After my abx failure - I knew I couldn't come home and say that I had been treated for Lyme without getting laughed out of the office - so I never mentioned Lyme even once. Do you think I could find a doctor? Nope!! They all turned me away being told something like (but most often it was word for word- rehearsed don't you think?) "I'm sorry, but the doctor isn't interested in taking on such complicated cases at this time." I begged - quite literally- a few offices as I figured if I went home and didn't have any medical care at all, I would die - and I almost did. I finally found a doctor that was just opening his private practice and he was in need of patients.

Sad to say, that describes most of my experiences over my lifetime with these infections. I had only one doctor that saw me as I went through my teenage years that actually cared enough to try to understand what was causing sudden narcolepsy, massive knee pain, sudden fevers, passing out, and all the "fun things" we live with. But he never did either.

I must have set records for being the patient that 'slipped through the cracks of the system' the most between my medical and dental issues. It's really no wonder I went for 40 years with these infections. I lived in the wrong time period and on the wrong side of the country. Why of course Lyme diseases isn't on the West coast even yet - right? Ask the wrong doctor and they will agree still.

I think it goes far beyond the issue of not having better tests. Why do we have to have laws passed to tell these doctors that they MUST tell the patient that these tests aren't accurate and that a negative test result doesn't mean the patient doesn't have the infection? Why do we have to force them to tell us these things? Back to them picking a choosing what information is worthy of telling us.

Sorry. Rant over (for now!) Lol.

elanacook, do you have your researched published somewhere about the biowarfare? I'm interested in the pre- and post- lyme disease.

Just found this... Looks like a new non-lyme disease ailment has cropped up. Sourced from Japan:
http://healthland.time.com/2013/07/19/theres-a-new-disease-spread-by-ticks-and-its-not-lyme/