Now I am ticked off , literaly

So today was my big doctors visit , the doctor office was having a hard time faxing over my paperwork, so we said we will just pick it up.

On the way to the hospital I start going through the paperwork, and I come across , a letter or write up from one of the infectious disease doctors.

He said, in my opinion this patient need a Psychiatric Evaluation, possibly in a facility. Reason being patient has a copy of her Lyme test with her, shows no signs of having lyme, I am not discussed this with the patients. Of course you didn't discuss it because you walked in the hospital room asked me one question and walked out.

I have lost over 50 percent of my ability to walk, but of course he didn't see that because I was in bed at the time of his visit. Also the scary thing is , this doctor has treated Lyme in the past.

So I told my story to the two new doctors, that have treated Lyme in the past, and they said I don't have lyme, but possibly a autoammune Disease like Lupus, took four tubes of blood and told me they would call next week.

They said my western blot was negitive , and my Elisa test was negitive. Now I know these Lyme test are not accurate, and depending on where the test is done , it will show different things. I haven't given up, I am going to see a real LLMD at the end of the month.

I also know I am not crazy, I did not invent what is happening to me, but I will fight like heck to stop it for killing me.

The first thing the LLMD asked me was if I was tested for co-infections, and I said no. She also has a infer sauna in her office, which I have heard positive things about.

The only strain that was positive for me was band 23 reactive for Lyme, all the doctors said I must have two bands. But what I read is that there are people with Lyme that never tested positive for it. So in my mind I have Lyme, and if they label me as being crazy so be it. I don't back down, and I won't give up.

Justme.

I've been there.

One of the neuros. I saw wrote in my chart that it was psychosematic illness and hypervigilence. Of course, he didn't tell me that he put it in my chart and then every Dr. that I saw through the same online medical system saw it and treated me like I was nuts after reading through my records.

Fu***** a-holes. Sorry, but no other way to put it.

Good for you for staying strong and fighting for your life (literally)!

I think many, if not most, Lyme patients have experienced things like this - treated like we're nuts, treated for diseases we don't have, etc.

You poor thing that is so frustrating! I completely understand! My "trusted" family Dr told me out of the blue that I needed a Psyc eval I actually believed him and made the appointment then I thought about it for a while and decided all I needed was a group of Drs saying i'm crazy on my permanent records because they don't believe in Lyme. I cancelled the apt and never went to that Dr again. I found my LLMD and they have saved my life. Let it blow off your shoulders and move on because the extra stress will only make you sicker. You will find the right Dr that will help you. Those ones just weren't it. Good luck with your treatment!

Just me,

I think almost everyone can relate to your story. Over here, people don't even know the name 'Lyme Disease'...

The stand-in for my GP said at a certain moment (I only visited him once - he didn't know my file - I was just asking for IM B12 injections because they made me feel less tired a few years back): 'may I suggest something? I think you're in a depression' - honestly, I had to literally stop myself of not grabbing his collar and punch him in the face (sorry for the language), I paid, got up and told him that a person would in fact get depressed after about 12 years of looking for a dr who just listens to his patients. I will never go to see him again, I prefer the ER

Once, the Dr who's treating me now had an almost-fit about his colleagues: he was turning all red, his voice was high, his vains were coming out... 'You know what a Dr should do? What the purpose of a Dr's visit is? What the meaning of our oath is? To RESEARCH, to FIND, to DISCOVER, not to assume or 'think''. That was the ultimate confirmation for me

Hang on Just me, I hope the apt with your LLMD will be better!

I haven't been able to find a letter that I once saw from a GP about 'Lymies'. In it he admitted that we scare most doc's - we often know more than they do not only about Lyme, but about all the tick-borne infections, the viruses that can come with them, about the different treatments out there for these infections, the doses required for each abx used. Doc's aren't used to such knowledgeable patients!!

He also admitted that we scare them because we aren't a 'quick fix', like so many things are today - give them a 'script and they go home and come back well' - is how he described the ideal situation, which of course, is far from what our cases are like.

None of this excuses the way so many of us are treated though! We must stand our ground and -knowing our bodies like no one else can - we must find a way to get the treatment we need- deserve.

Hang in there Everyone!! Knowledge about these infections and their possible treatments gives us the power to heal!

Justme, your story reminds me so much of mine. I can really relate to everything you're going through. I'm so happy that you were able to find a LLMD 30 minutes away and have an appt. in a few weeks. You are strong and you will get better because you are researching and advocating for yourself and aren't letting Drs. tell you that you are crazy or have some other disease.

opugirl-that's a good suggestion. I have decided that when I get better, there are several Drs. that I will be writing to and filing complaints against. Not as a form of revenge, but I hope that in some way maybe they'll think twice about being so dismissive, rude, and cruel.

I have to chime in for my first post.  I can so relate!  I am sure I have Lyme and am in the process of trying to find a LLMD, etc. 

This all started for me 8+ years ago when I started having huge fatigue, headaches, muscle aches, etc.  It went from one thing another.  Terrible stomach issues too.  I had just moved to a new town and went to see a new dr.  He was nice at first and then after several visits with me getting no better I could tell her was getting frustrated!!! Then he said, "There is nothing that could be causing all these symptoms you say you're feeling. So, I think you need to go on ANTI-PSYCHOTIC medication and see a therapist to help you because there is nothing medically wrong with you!!

I could not believe what I was hearing!  Needless to say, that was my last office visit with him. I kept going from dr to dr and having test after test - MRI, CAT scans bloodwork. Nothing ever pointed to what was accouting for how badly I felt. 

Never once did anyone suggest a test for Lyme until 4 yrs ago when I saw an ND. He ordered the Igenex and it came back with only Band 41 as positive. So, he said I didn't have Lyme and diagnosed me with fibromyalgia because "I can't think of anything to diagnose you with."Don't you just love it?!

Long story short, 4 years pass and here I am ... convinced I do have Lyme and my symptoms are getting worse.  I'm scared and I'm also unwilling to just swallow what I'm told by the medical folks.  I have educated myself on Lyme - but realize I still have tons to learn.

I have to find an LLMD that I can trust and yes, that I can somehow afford.

I'm so sorry any of us have had to endure this kind of shameful, judgmental and cruel treatment.  My heart goes out to you all. 

I'm grateful to find this sight and hope to learn more from everyone here.  Kathleen

Well said, Justme!