I am waiting for my appointment tomorrow. Thank goodness I have one.
I have been through so much in the last 6 months. No one where I live would even bother to call the LLMD about my test -the one where they looks under the microscope and takes pictures. I just got sicker and sicker.
Members of my family and extended family have proven untrustworthy. The behavior of my alcoholic extended family is practically crazy and they scare me to death.
But when the people I trusted most lied to me, it shattered my sense of reality, which was already being tested with this de-personalization. I won't speak to anyone. I can't. I feel like I don't trust them or even know who they are.
I found out the test results the NP did for heavy metals were skewed to make them appear much higher than they actually are.
I wondered why she instructed me to collect urine for half the amount of time the test said to collect it.
Most of the EDTA is expelled in the first few hours after chelation so that is when the percentage is going to be the highest. The longer you collect the urine, the more deluted it will be.
Then she used a graph that was for unchallenged collection - what you would normally have in your urine. Now I am worried about what kind of EDTA she used.
She promised to call the LLMD I am seeing tomorrow and to do IGENEX testd but ever time I reminded her, she would make excuses. I feel she was just getting a lot of money out of me.
She had me do a very expensive test for environmental toxins and didn't even know what it was that I tested high for.
She said it was from plastic bottles but when I looked it up, it was from herbicides. She should know people with lyme look things up!
Everything feels strange and unreal. I hope this can be explained with the diagnosis of an infection. I would guess bartonella.
What if the LLMD brushes me off to? I think I would collapse in a heap of tears and not be able to make it home.
I feel so let down that people I trusted would not be more sensitive and caring about me. It is so sad I waited so long to get myself here.
.................................................
Breaking this up for easier reading for many here - Robin
[ 01-22-2014, 10:21 PM: Message edited by: Robin123 ]
Posted by momindeep (Member # 7618) on :
What town do you see your NP in? So very sorry about this all.
Posted by GretaM (Member # 40917) on :
Oh Neff! I am SO sorry!
What a letdown about your NP! That is shameful to lie to you. She should have been honest with you.
I am so sorry you are in that bartonella-ish head space. I can completely relate to that feeling of not quite knowing where to step.
I have only heard good things about the LL you are going to see from the folks in my support group.
He received a bit of scorn in the beginning for the Bug, so if anyone can relate to plowing forward without the support of ones peers, he can.
Just take a deep breath. And know that quite a few of us with bart-ish infections are having a real rough time this last week.
I don't know what it is. Maybe the time of year, barometric pressure, I don't know, but anyone with bart-ish symptoms are near rock bottom.
So please, it is NOT you! It is these darn bacteria! You have done everything right in preparing for this appointment.
In fact, I am so proud of you for circumventing the middleman and going right to the source. Good for you!
You booked your flight your hotel your appt. I'm burnt out just thinking of it! And you did all this while jumping through the hoops of an I'd doc.
You are an amazing lady!
An if necessary, if you collapse on the office floor, an Arizona LN friend will pick you up, drive you to (sorry my American friends, my geography is the pits) , California border, where another LN friend will transfer you. We'll basically shuffle you along state by state in the back of our cars until you're home safe in Montana.
Or if you wish to go the other way, we'll shuffle you along state by state until the Mexican border. I will meet you there and we will make a run for the Panama Canal or somewhere else tropical where things are more our speed.
3 toed sloths live in the Panama Canal and I am feeling about that speed today. So quick algae could grow on my back.
You're going to do just wonderful Neff! You've done your best, and regardless of how the appt turns out, please keep us updated. We really care about you. Posted by surprise (Member # 34987) on :
You are in what I like to call a dark day. It's dark and horrid.
The best thing to do is not speak to anyone, if you can (they'll regret it, lol)
Listen, you are going to be okay. All the incredible hard work you've done, for years, is not for naught. It's worthy, you've progressed, it's not all gone.
This, right now, is a dark day. It WILL get better. You WON'T feel like this forever, I promise.
The Dr. you meet tomorrow will respect you, your knowledge, your strength. We all do.
Thinking of you, S
Posted by lax mom (Member # 38743) on :
How horrific of that NP!!!!!
I am so sorry you are dealing with this!
When everything around you is crazy, it can start making you question your own sanity at times...it's NOT you...it's THEM.
You have been such a source of strength for all of us on here.
I know you will have a good appt tomorrow.
Posted by Kudzuslipper (Member # 31915) on :
Hugs! Dark day indeed!
Posted by lax mom (Member # 38743) on :
I have found right before I am about to have a breakthrough, all he// breaks lose to try to get me to give up.
The saying is true....it IS always darkest before the dawn.
Posted by Lymetoo (Member # 743) on :
Wherever you are, it does not sound like fun! I hope and pray that the LLMD visit will be wonderful and you will be so glad you came!!!
That is horrible about your family members. That must be hard to handle. I can't imagine. UGH!
Keep us posted. Tomorrow will be a brighter day.
Posted by CherylSue (Member # 13077) on :
Hang in there. A good LLMD makes all the difference.
Praying for you.
Hugs, CherylSue
Posted by nefferdun (Member # 20157) on :
You guys are the best!
Momindeep, I am in ****. I am praying this LLMD has the answer.
Greta, as i was reading your post I could feel the swelling in my brain begin to subside. By the time I got to your good humor about driving me all over the place (I know Canada about as well as you know the US) the laugh made me breath deeply and let go. You really get how horrible this infection can be.
Surprise, it really is a dark day but all of you are bringing me light. Thanks for making it ok that I am not speaking to anyone. You are very right. They would be sorry!
Laxmom you hit the nail on the head about crazy things around you making you question your own sanity. I have been thinking about a breakthrough, not just in what is going on inside my body that is affecting my mind - but around me as well.
There is a lot of hope for that because I recognize something is wrong. That is the first step - not listening to everyone dismiss the fact that something is very wrong - and doing whatever I have to, to get the help I need.
Lymetoo, thank you for your prayers and understanding. You are always there for everyone.
Thanks everyone. Tomorrow I will let you know what happens. What a relief.
[ 01-23-2014, 05:49 PM: Message edited by: Lymetoo ]
Posted by TNT (Member # 42349) on :
It's a shame the sick ones are so misunderstood and taken advantage of. And physically, I can relate very well to how you are feeling. Things have been flaring for me, too.
Try to get a good night's rest for your big day tomorrow. I hope it goes well.
Posted by MannaMe (Member # 33330) on :
Thinking of you Nefferdun, and praying you get the answers you need tomorrow at your appointment.
I agree with not speaking to those who don't understand - it doesn't help and only makes things worse!
Keep searching ... we WILL find the answers! We WILL beat this disease and come out better than ever!
Posted by lax mom (Member # 38743) on :
I admire your courage. Posted by Robin123 (Member # 9197) on :
That's too bad, how they've mistreated you! I have found that I have to learn who I can trust and who I can't. And when you find people you can trust, those are the people to work with.
Posted by GretaM (Member # 40917) on :
Fingers crossed for you, Neff!
Posted by map1131 (Member # 2022) on :
Go get 'em Neff. You are blessed enough to have your common sense still in tact.
You will not let someone screw you over again. I hope you get an aaaahhhh moments at your appt.
Pam
Posted by nefferdun (Member # 20157) on :
So I am headed out in a couple of minutes. This is the big day, the revealing moment (I hope).
Posted by lpkayak (Member # 5230) on :
Neff. I just saw this and am so sorry. Like others here i know first hand about bad docs and non supportuve friends and family. I hope it goes well today...the thing about bad docs is you really Learn to appreciate the good ones
I really hope it goes well. Either way we will be here for you
Posted by nefferdun (Member # 20157) on :
You won't believe what happened. I am in a state of shock. I am adding a new topic.
Posted by Lymetoo (Member # 743) on :
I hope it was GOOD! Posted by lax mom (Member # 38743) on :
Can't wait to hear the news!
Posted by lyme in Putnam (Member # 11561) on :
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