I'm new here and hoping for some help to find out what is wrong with me. My doctor thought I might have Lyme. Then when he did the blood test it was negative. He sent me to other doctors who found nothing wrong. Now he doesn't take me seriously.
I feel like I'm going crazy. It feels like I am jumping out of my skin. I can't even describe my breathing. It feels like I can't get air but cardiolygist did tests that showed nothing. I am exhausted ALL the time and ache all over and my head feels like it is exploding. One moment I'm shivering and the next I'm sweating. My skin is rashy. No one understands and the doctors are now acting like it is all in my head. I'm tired of feeling sick and not being taken seriously.
I've been doing some reading. Could I have Babesiosis or a virus? I've been bitten by ticks but never got sick right away.
I can't stand feeling sick and my family needs me to be better. What am I supposed to do when the doctors won't help?
MChase
Posted by seibertneurolyme (Member # 6416) on :
It defintely sounds like Babesia -- but you probably have Lyme as well. Most people have multiple tick-borne infections although it is possible to only have one.
The rash sounds more like Lyme. The rest of the symptoms could be either Lyme or babesia or a different tick-borne infection.
There aren't many viruses that cause a rash -- doubt that you have chickenpox or measles -- surely a doc would have recognized those.
Please post in the seeking a doc section. You just haven't been to the right doc yet. There are a few in Florida -- but you will probably need to travel to find an LLMD -- lyme literate medical doctor.
Unfortunately tests for both Lyme and babesia are bad -- lots of false negative tests. That means you really have the infection but the test missed it.
Don't give up. You can get better with the right doc.
Bea Seibert
Posted by Keebler (Member # 12673) on :
- First, please drop the word "crazy" from your vocabulary. That word will only set you up in the eyes of others (tell any doctor you fell like you are going crazy and that doctor will agree - always).
The term also insults those with mental illness. So, I'm on a campaign to drop all disparaging remarks about ourselves in order to gain respect we deserve.
You are sane. But you are ill, so that affects us in so many ways.
What you describe about the interactions with your doctors and the test is classic here. Now, you may not have lyme. But you may. Lyme tests are not the sole indicator and should never be used to rule out lyme.
You need to be assessed by a real expert, an ILADS-educated LLMD. There is so much to read to understand why. And if you see a LLMD, a really good one will also assess you for other tick-borne infections and, perhaps, also other chronic STEALTH infections. Lyme is not the only thing to consider.
First, your history: Ever any bulls-eye rashes? Any other rashes &/or noted tick bites? Not everyone remembers a tick bite nor has a rash but, if you did, that is key.
Most peole don't get a rash and many do not get sick right away.
You should look for a LLMD(Lyme Literate Medical Doctor) who can help you determine whether or not you have Lyme Disease.
Many times your test will come back negative. Especially if it has been a while since you were bitten.
All my tests came back negative until I insisted that they run a Western Blot test. As soon as I did, it came back Positive.
GET AN LLMD. You are not crazy and don't let any doctor out there convince you that you are. They tried that with me and I knew I wasn't.
Posted by street129 (Member # 23472) on :
sure sounds like how i feel....it could be lyme and company.
you are in the right place, people here will guide you in the right direction... keep the faith.
right now im a little shaky, im going to take xanax..
Posted by Keebler (Member # 12673) on :
- In the meantime, magnesium and fish oil can help calm overstimulation and frayed nerves that accompany lyme (from the toxicity of the infection).
Good food (avoid anything artificial). Avoid MSG. No steroids. No aerobic exercise but gentle movement is very good. Walking, yoga, etc.
Get good sleep. Keep hope. You will be presented with more reading materials soon. -
[ 02-06-2010, 05:30 PM: Message edited by: Keebler ]
Posted by street129 (Member # 23472) on :
keebler...you are the best...
im a female for those that don't know it yet....
keebler...i love you and your wisdom...you are so right on!!...
Posted by Pinelady (Member # 18524) on :
MChase you may find more information if you get copies of blood work performed. Most docs don't
know the Elisa is almost worthless, and the WB test is neg is a lot of people who do not express
antibodies caused from the Lyme. Don't give up.
Posted by MChase (Member # 24372) on :
Thank you for all your replies.
My husband keeps telling me I need to find a better doctor, but right now I'm so aggravated with doctors. I already saw an infectious diseases specialist. I want help but I don't think I could handle anyone else not taking me seriously.
I don't know where my doctor tested me. He just said it was negative. I've seen him a long time and he was very good. I don't understand what happened. Why won't he help me?
It's all the exercise I can handle taking my kids to school and activities. I'm exhausted. I'm taking some supplements they suggested at the health food store but they aren't helping.
Thank you for listening.
Posted by MorningSong (Member # 19989) on :
While trying to find an LLMD (Lyme Literate Medical Doctor), will your primary physician be willing to run a Western Blot test to see if it comes back positive.
I know these tests are not always accurate, but my Western Blot came back positive and it was enough to get medication until I could see an LLMD. Definately find an LLMD right away.
Im sorry you are going through all this.
Posted by LightAtTheEnd (Member # 24065) on :
My first visit to my LLMD was wonderful. He read every page of the 20-page narrative and 10-page form he had requested that I bring.
He asked me a bunch of questions and did a very thorough exam, and believed everything I told him about my symptoms.
He spent a couple of hours with me. He seemed very understanding and compassionate. So different from all those other doctors.
ID doctors will treat you like garbage most of the time, according to all the stories I've read on here of people's experiences.
Regular GPs may be interested in helping you but will scratch their heads and give up because they don't know anything about Lyme.
A good LLMD will take you seriously, and will actually have the knowledge and experience to offer you help.
I can barely afford the trip to see mine, but it's entirely worth it.
Posted by street129 (Member # 23472) on :
LightAtTheEnd... did you do any bloodwork as yet
Posted by WildCondor (Member # 434) on :
Fire that doctor...on to a new one...get a LLMD! Posted by MChase (Member # 24372) on :
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