nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
What town do you see your NP in? So very sorry about this all.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
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.
posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hang in there. A good LLMD makes all the difference.
Praying for you.
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
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.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
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!
Posts: 2258 | From USA | Registered: Aug 2011
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
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.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Fingers crossed for you, Neff!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
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
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
So I am headed out in a couple of minutes. This is the big day, the revealing moment (I hope).
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You won't believe what happened. I am in a state of shock. I am adding a new topic.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[Cool]](cool.gif)
Printer-friendly view of this topic