my deep thought for today...

Recently I was with my husband and we pulled in and parked at a very crowded home depot. It was a very bad day for me...I couldn't think right, I wasn't able to speak, feeling like I was dragging my painful body through life and in that few minutes gathering the strength to drag that body that was failing me through home depot I thought of something.

So as we sat in the car, I turned to my husband and thought out loud. How many of these people going in and out this store have lyme I asked? How many are dragging their very sick bodies around trying to live their life? (I live in pennsylvania in a high endemic area) How many have no idea for years upon years what is wrong with them? This thought just stopped me in my tracks...I couldn't move for the horror of how many people living in my area may be very, very sick...maybe some know they have lyme and some don't have a clue.

I am sorry, this post doesn't have a whole lot to do with anything, or even a question or helpful info for anyone. It just really hit me hard this realization. I think it hit me, to mull this over, here on the forum, when I just read the post about brain fog clearing and if it ever will. Because every one of those comments on brain fog could have been written by me. My strange brain symptoms are shared by so many.

For so many years (before my diagnosis), I thought I was the only one going around not able to figure out change, or follow along with someones conversation. Or getting lost in a familiar place. Not being able to follow directions. From going to reading 3 books a week to not being able to finish a paragraph. I thought I suddenly was incredibly stupid or getting alzheimers in my 40s. I would panic out in a public place if I lost sight of my husband....do others do this too? I thought I was the only one who had debilitating pain in a part of my body everyday for 6 months only for it to disappear and reappear somewhere else?

I see how many people on this forum have the same odd symptoms as me and I am so so sorry to learn of that but relieved that I am not crazy nor am I alone.

But honestly, how many of those faces that I pass by everyday, are suffering so badly with this awful disease?

Lyme brains think alike. Sometimes I'll be sitting in traffic and glance at the driver in the vehicle beside me....And wonder.

My first instinct when someone tells me that they have Chronic Fatigue Syndrome, MS, Fibromyalgia, etc is to automatically ask if they've been tested for Lyme. I think we've just been so traumatized but also made so much more empathetic by this illness that we wouldn't dare want anyone to have to go through the crap that we go through. Especially those of us who went years without a proper diagnosis. No one should have to experience that.

I agree MA10!

We need a 'like' button option, or 'thanks' for the post thing, lol. I'd be clicking them sooo often!

Bluelyme, my heart has been aching at your situation lately. We were all so hopeful the Bee venom was going to get you back 100%.

Hope you don't mind if I send you some (((hugs))).

If anyone ever figures out what the mental block is towards the possibility of Lyme Disease, let me know.

I mean, it's not as if they've been bombarded with anti-lyme propaganda, have they?

I am positive we will all be glad you kept hanging on.

You know, it's been so many years - decades- when I was actually 100%, so I really have never sat down and decided what the percentages would be.

I do know that 100's of times over the years I wondered and asked myself if I was ever going to 'feel' normal again...because of course I didn't know what was wrong with me, I knew they were wrong about Fibro.

It's too late now at my age to shoot for normal. I would like 3 things.

First and foremost I would like to be able to breath freely again, even if I want to walk a couple of miles.
Second, I would like to not have to worry about my bones crumbling to dust if I trip and fall.

And thirds, oddly not THE most important thing for me, I would like to be pain free again, without needing to have to have a half a pain pill anymore.

All 3 of those are too much to ask for, so I don't know what 50% would even mean for me.

I work in nursing home in the rehab department, and work with alot of pts with arthritis, some tell me there stories how suddenly their symptoms came upon them out of know where, and i always question in my head as to whether or not they have lyme. one of my patients had all the lyme symptoms and was diagnosed with with parkinsons, which he also had arthritic symptoms with it. Maybe im just paranoid but it seems to jump out at me alot. I want to say something but they would probably think i was crazy and dont want to stir things up, at my job. Alot of my co workers look at me as they cant believe i got bitten and that it is a rare thing to have lyme disease, pretty sad. but on the flip side i talk to alot of people who have relatives and friends that have it. my supervisor had lyme for 9 mos and is fully recovered, she said she never stop her life and pushed through it, she is an avid runner.

bluelyme said...
94 % of tests sent to dna connexion have a positive result..

Blue lyme. Can you elaborate on your post please? I'm curious to learn more of what this means.

ChickenArise said...

bluelyme said...
I think its 9 out of 10...

I agree. I think 90% of the population is infected and carries Borellia. I believe the body's immune system keeps the count low and people remain symptomatic until some physical or mental stressor triggers and Borellia starts to multiply with ease. Each infection paves the way for another.

That's probably too high of a number to be accurate, however, if this hypothesis is true (or something close to it), it supports my hypothesis that lyme is much more contagious then we currently understand it.

My hypothesis is it's much more transferable, on the level of herpes simplex 1 (which 70%+ of humans eventually get).

dacarte3 said...

bluelyme said...
94 % of tests sent to dna connexion have a positive result..

Blue lyme. Can you elaborate on your post please? I'm curious to learn more of what this means.

my doc talked to the director over there ..and this stat was given directly from the horses mouth..so to speak ..
also it is concurrent with what my microscopist mentor said ,she sees spirochetes in 9 of 10 peoples blood ...
if cattle have it ,mosquitos have it ..and pasturization doesnt kill it then ..also medium rare burger s ..come on just look at the state of affairs ..deep deep doo doo

bluelyme said...

dacarte3 said...

bluelyme said...
94 % of tests sent to dna connexion have a positive result..

Blue lyme. Can you elaborate on your post please? I'm curious to learn more of what this means.

my doc talked to the director over there ..and this stat was given directly from the horses mouth..so to speak ..
also it is concurrent with what my microscopist mentor said ,she sees spirochetes in 9 of 10 peoples blood ...
if cattle have it ,mosquitos have it ..and pasturization doesnt kill it then ..also medium rare burger s ..come on just look at the state of affairs ..deep deep doo doo

Right. So if it can be ingested/consumed, then it can be passed from human to human somewhat easily. Kissing, sharing cups/utensils, bodily fluids on surfaces (like herpes).

Bacteria are actual living organisms. Bacteria can live outside of host as well, not just inside a host.

So, why people think it's ONLY from a vector to host transfer is odd.