ANGER!

I am so angry this morning I don't know what to do with myself. I know that this is grief... the anger stage. I want to lash out, badly!

I've lost so much of myself the last few years.

I was relieved when I finally got the positive WB on Tuesday. Now I just want to hit somebody.

I've had years of deteriorating health. I told every doctor I saw that I thought I had Lyme. NOBODY paid attention. Nobody put it together. The ILADS site says Lyme is a clinical diagnosis. Why could nobody see it?
I went to my area Lyme SPECIALISTS 2 years ago...I told them I thought I had it. They didn't even test me!!! They did an expensive stool test and diagnosed me with adrenal fatigue. And then they sold me a bunch of pricy supplements that did nothing. After 3 visits I didn't return.
I'm angry at myself. Why didn't I insist on testing? I KNEW!

I feel so overwhelmed with the decisions I need to make. All I can do is cry this morning.
I read Lyme stories and so many of them are me...how is it that this is missed over and over and over again???

Thanks for being here. I know I'm heard and understood here.

It took three doctors for me, and I had to DEMAND a Lyme test from the third. It's ridiculous. One doctor even told me "it doesn't sound like an infection".

We feel your pain. This forum is a soft place to land with loads of information. Wishing you the best......

I hear you Kathie! I am frustrated this morning after reading another news story where they talk about the need for better antibiotics because some people do not get well after the initial course of antibiotics. My frustration is that they never talk about the people who have gone UNTREATED for years because doctors do not test us or the testing is not accurate. News articles usually make it seem like it is so easy to identify when you first get Lyme Disease. Yet so many of us (if not most) on here were never treated initially and it took a long time to even identify the cause. I guess if they put it out there like that there may be mass hysteria with MANY people wanting to get tested.

k07 said...
I hear you Kathie! I am frustrated this morning after reading another news story where they talk about the need for better antibiotics because some people do not get well after the initial course of antibiotics. My frustration is that they never talk about the people who have gone UNTREATED for years because doctors do not test us or the testing is not accurate. News articles usually make it seem like it is so easy to identify when you first get Lyme Disease. Yet so many of us (if not most) on here were never treated initially and it took a long time to even identify the cause. I guess if they put it out there like that there may be mass hysteria with MANY people wanting to get tested.

Yes! and then the IDSA says hey, look at this study where these patients don't get better after several months (long term in their view) on 2 abx. Many of these patients have been very sick for years. So in their view, that means "long term" abx absolutely 1000% doesn't ever work! it often takes a massive much longer term effort to treat these patients (holds hand in air, "That's me!" I say). But their study methodologies and designs are meant to reinforce the status quo they've been pushing for years.

And sadly you are right, people realizing the magnitude of the issue would probably overwhelm the system. But that is no reason to deny chronicity when it is being proven in research. So many docs use IDSA info to deny patients and also marginalize us and disrespect us. In the end I'm almost positive our situations will be vindicated by research, i just hope it happens sooner rather than later!

Ok ok sorry I shouldn't go off on these tangents. It makes me angry! and I'm trying to make Kathie feel better! yikes, sorry about that Kathie!!!

we should all be venting to ANY source of media....I call and email journalists,after they write about Lyme and say "you have no idea how bad this is getting" please keep up the good work!

use anger on the condition.....kick that thing in the a@@.

i hope you are feeling better today

I wish we could put out a collective article saying:

"Hey, look at all these people! They have gone a very long time with mysterious medical issues and have discovered it's Lyme Disease & Co-infections. Most did not get a bulls-eye, tell-tale "Lyme" symptoms, or even notice a tick. Let's also mention here that Lyme disease can be passed in utero and possibly sexually! Besides ticks, mosquitos, lice or fleas can transmit the bacteria. This is now a possible infection for EVERYONE.

Most people here have failed the regular Lyme test at the doctors office. This is because it's wrong at least half the time! LISTEN - if you were tested for Lyme Disease and it was negative you STILL have a possibly greater than 50% chance of having it! It took years for some of these people to have an accumulation of symptoms (some have gone 40 yrs!). To get a somewhat accurate test you must pay at least $200 just for the test and find a doctor willing to draw the blood. Good luck with that! The road blocks are at every turn for these suffering souls.

So what medical treatment is appropriate for this group? These are not a case of persister cells leftover from the initial infection. And let's not forget we're not talking about a cut and dry bacterial infection. These people have a whole mixed bag - co-infections, parasites, heavy metals, mold, genetic mutations, thyroid/adrenal issues, psychiatric issues, leaky gut, and the list goes on!

These poor people are denied medical treatment and end up having to research their illness (with brain fog to boot) while often deathly sick! Oh, and they have to pay out of pocket. If that just isn't insult to injury.

This is a darn shame. Our medical system is failing a huge population of people."

Then go on to list all the weird symptoms we talk about on here. Just getting this off my chest feels good (-:

We're here for you Kathy!

Ok. I too am glad you're in touch with your anger. Who wouldn't be so upset with all that you and
many of us have gone through? I always think, if I went into a car mechanic and he or she misdiagnosed my car, and I paid say $300.00 to have the radiator fixed or whatever and it didn't run, wouldn't I go
back and request he make it right or request a refund? That's the most basic kind of 'transaction'.
How can some alternative doctor take your money and tell you you have Wilson's disease and
never test you for Lyme? (Now, you've got me going) I went for some fifteen years
bounced around. After a year, one doctor actually said, I don't know what's wrong with you.
When I was finally diagnosed, I just 'sat there'. I was so numb by this time. (Plus I'd
never heard of Lyme.) I do feel the anger now more and more I'm pleased to say.
Overall, I'm doing better than I was ten years ago when diagnosed.
I also agree, we need our energy to cope with what's in front of us. To start to heal
I hope today is
a better one for you. This is an excellent site to be on. I am sending good wishes to you.

(((Kathie)))

I remember when my LLMD said (while staring at my lab work and in the presence of my husband, who I don't think really thought there was anything wrong with me)

"You are significantly ill".

He said more but those 4 words brought tears to my eyes. I didn't want to face the fact that my lyme had gone chronic but just being validated for the truth of what I'd been living was such a relief.

And now you have that proof that you aren't nuts or faking or (fill in the blank). Now you have a place to start from and (yay!) make decisions about. No more thrashing around looking and that's worth a lot, right?

God Bless you, girl.

I shed tears too..for you and and all the other people who have accepted there diagnosis of description of symptoms rather than root cause..truth is my adrenals and thyroid are affected along with every other system but why is what i kept asking...and then there is the oh snap how do i treat question?...god speed and welcome to the club we dont wanna belong to.