A little perspective

Greg, I recently broke down the number. 300,000 is conservative. More reliable sources say "at least" 300,000.

So I bump up the number to 500k per year. Then over 30 years. That is approximately 6% of the US population, which is 1 in 15 people.

If you go to a crowded public place and count 45 different people, 3 of them have the lyme bacteria whether they know it or not.

If you go to a sold out professional basketball game in an arena that sits 20,000 people, 1200 of them have lyme. If you go to an Ohio state buckeye game, a stadium that sits 100,000 people, 6000 of those fans have lyme.

Perspective.

High profile people form Avril Lavign, to Alec Baldwin, to Ben Stiller, to MJ Fox, to even the former president G.W. Bush have lyme.

I really don't know what more it's gonna take.

I look at a crowd and wonder who has lyme and has been told they have something else. Those are the poor people on the merry-go-round of doctors and tests. This saddens me too.

Also I think the figures are WAY off. You see those 300,000 or 500,000 are CDC positive people. I am not CDC positive and have lyme. What about all of us. We should be counted.

Post Edited (PeteZa) : 5/26/2016 8:16:43 AM (GMT-6)

dacarte3 said...
Well that's why I tried to bump it up to 500k. It's more than 300k but I still wanted be conservative.

Gotcha!
I still think that there are many people out there being treated for fibro, chronic fatigue, ms, etc that may really have lyme.

I think the stats are way off and sad only those with lyme care.

Just wait until infected ticks get dropped on Washington DC by a bunch of birds!

Yes the numbers are higher than 300,000 but I wanted to use what the establishment admits to and they still do nothing about it.
I went back to my GP the other day because I need a letter of medical necessity to get an oral air way device instead using CPAP. The last time I talked to him I hadn't been diagnosed with Lyme. All I knew at the time was that I had crazy IBS issues and that I felt better on certain types of antibiotics. He prescribed different kinds of antibiotics specific for SIBO with no results and was now convinced I suffered from yeast. His subsequent yeast protocol also failed.
Long story short I filled him in with all of my new info, test results, treatment, how I responded positively to treatment etc. His suggestion was to run another western blot through lab corp and if it came up positive he could prescribe another couple weeks of antibiotics. I told him there was no point as it would probably come up negative besides I had remembered having tick bites 15 years earlier with a rash. He then admitted that he didn't know much about Lyme and that it is really hard to treat and he wouldn't be able to help.
He is considered to be one of the more open minded DO's in the area. On one hand at least he is honest about what he does or doesn't know, on the other hand it bugs me that I am giving him the diagnosis and all he has to to is write the prescription but he wont touch it, especially with how common it is.
I don't think having ticks land on Washington will help anything. All of the politicians would be met with the same resistance and ignorance from their medical Dr.s as well.

Yesterday, I read an article that came across my fb feed...and it said 700 cases in Canada - either this year or last year.

Really? That's ridiculous.

Well, the majority aren't even reported...mine isn't. Igenex doesn't count...so the number is totally useless..not even relevant.

Jenny,

I don't believe in a world wide conspiracy theories that the entire main stream medical community are a part of the illuminati and were told to pretend lyme doesn't exist.

BUT, I do believe in a few things:

1. Highly miseducated on the subject (whether this is done on purpose by the powers that be is another conspiracy rabbit hole)

2. Insurance doesn't cover long-term lyme treatment. So what happens is, doctors may believe it exist but they know there's no money in treating it. If insurance covered it the doctors would get paid (rightfully so). If insurance doesn't cover, even if the patient can afford out of pocket expenses, it still wont be anywhere near as much as they would get from insurance. So there's zero monetary incentive to treat chronic lyme.

But they can't just out right say this because it's ethically and maybe even legally wrong. So they become dismissive and play dumb (even if they know it exists). They want to help but can't. They will be going against guidelines they are told to follow, putting their license in possible jeopardy and top of that there's no monetary incentive.

So to make us go away without out right saying the above reasons (though some doctors admit to reason #1, which I respect when they can admit that), the cold shoulder approach is given.

3. if pathogenic infections like lyme and others are acknowledged and treated successfully many of the other illness of such as alzhiemers, parkinsons, dementia, and even cancers are then prevented and there's no money in prevention/cures but tons of money in life long treatments.

PeteZa said...


She said, "you need to talk to your doctor because it sounds like a virus in the way it can lie dormant."

Wow. Just wow. Many bacteria if not the majority of them can lie dormant.

Maybe the term "lie dormant" is causing the misunderstanding. It may not be lying "dormant" but its greatly suppressed and the person is asymptomatic, however the potential for the bacteria to grow to a size it's problematic again is common.

People "get sick" or feel ill multiple times a year and just think well i got "some bug" but it's gone now. No it's a bacteria infection that grew to a size that made you feel bad but after a week your immune system beat it back down and now you feel better. But next year when the conditions are right you will get "sick" again.

People don't understand that you are not "supposed" to get sick at all. But when we humans do it's because the immune system dipped that allowed pathogens, many that are already in us to grow the point it makes us feel ill.

I admit I knew none of these concepts before I got lyme. So can we really blame people for being ignorant on the subject.

Yeah, I think the numbers are way higher.

I have had to go to a vein doctor because I had veins that broke in my wrist and ankle and they keep checking for clots (nothing). The technician told me she had it. I have had friends who have had it. That's just people who felt like sharing with me. How can so many people anecdotally have been actually diagnosed with it around me and yet it's considered some weird and rare disease? These people I have spoken to never recall being bitten by a tick. My friend, another scientist, thinks it came from mosquitoes.

I think it's becoming an epidemic.

I never would have even gotten tested for it unless a friend told me about it. That's how frightening it is. No one even thinks about it. They just think it's rare and won't happen to them. All my regular blood work was normal for a pre-op but yet I felt awful and called my GP and told them to run a Lyme test while I simultaneously went to a rheumatologist. Sure enough, two positives. Out of the blue. No clue about any ticks anywhere any time. Just horrible pain and weird symptoms.

evianangel said...
Every doctor I've mentioned lyme too gets a strange look on their face, half smiling half laughing half holding back a secret.

My elisa results were never given to me, they called and said negative but when I found my blood work online it just said sent to the cdc results to follow.

They won't give me the number. What gives? What are they told in medical school about it is what I want to know. I don't understand why this has to be such a conspiracy. Is it because the science of chronic lyme isn't black and white for their standards? Or is there really some other reason.

Regardless so many are suffering and all we want is to be acknowledged. I hope in my lifetime it will.

Call your local Health Department. It is a law here in Missouri at least, that positive infectious diseases (including the tick borne ones) be reported to the Health Department (who should have notified you in turn) and the CDC.

They have to tell you.

I am beyond late stage with the Lyme. Throw in the positive RMSF results on top a year ago and the age that I am and I'm done in. I pushed for the abx's and the herxing as everyone knows bring you to the brink of death and I have decided this morning I don't have it in me to fight any more. It's coming at me from all parts and I don't have a smidgeon of the resources to deal with it.

On top of that having the only 2 people in my life not even begin to understand that this is shutting my body down beyond my control, I am just going to let it run it's course to whatever end.

I admire everyone of you that have been able to push yourselves to get through this,and prayers for all of you still fighting. It's been 24 years since my first positive test, with a probable 8 years of misdiagnosed infection prior to that, coupled with everything else that may or may not be related, I am beat.

julymorning said...
I am beyond late stage with the Lyme. Throw in the positive RMSF results on top a year ago and the age that I am and I'm done in. I pushed for the abx's and the herxing as everyone knows bring you to the brink of death and I have decided this morning I don't have it in me to fight any more. It's coming at me from all parts and I don't have a smidgeon of the resources to deal with it.

On top of that having the only 2 people in my life not even begin to understand that this is shutting my body down beyond my control, I am just going to let it run it's course to whatever end.

I admire everyone of you that have been able to push yourselves to get through this,and prayers for all of you still fighting. It's been 24 years since my first positive test, with a probable 8 years of misdiagnosed infection prior to that, coupled with everything else that may or may not be related, I am beat.

Please don't give up! I'm far from the only one with a story like mine and have healed!! I was infected for 40 years (age 7), when I was finally diagnosed, the LLMD told me I had every single one of the tick-borne infections and that I would be lucky to heal with 10 - 15 years of treatment. The abx just wasn't the route my body could take though, so the abx made me much, much more ill.

I was bed bound and literally couldn't function. I couldn't read or write, couldn't follow written or oral instructions or follow any patterns, much less spell well enough to be online (not even spellcheckers could help!). I 'set to' though, because I knew I didn't want to live like that at least, and learned how to help my body detox and heal with a great deal of supporting different organs and systems in my body - and I healed!!

I was foolish to not recognize the signs that I was allowing too much stress in my life, so my adrenals came crashing down, taking my thyroid an immune function with it - and then got reinfected, so I'm back in treatment, but healing once more. This time I'll be paying close attention to my stress levels the whole time though!! A hard lesson to learn, but boy did I learn it!

These infections are not a quick way to go, you are much, much better off to fight for your healing. There are so many different ways that people are healing now, all you have to do is keep fighting and keep trying until you find one that works for you! I was the first one to not use a LLMD and use herbs to heal on this forum, and it wasn't easy as there wasn't a lot of support - until they saw that I started healing. To their credit, I then began to get quite a lot of support, even though they didn't have any idea what I was doing! LOL!

You will be able to find that kind of support here too. Many of the members here use something other than abx - many use a combination of abx and other alternative healing methods. It's finding what's right for you that's the hardest.

Hang in there and keep fighting, believe me, it's worth it!!