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
Posts: 4 | From Wilton Manors, FL | Registered: Feb 2010
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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.
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
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.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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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.
Posts: 4 | From Wilton Manors, FL | Registered: Feb 2010
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posted
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.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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