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Old 06-09-2009, 08:53 PM   #1
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should I get a new doctor?

Okay, so I'm not looking for someone to diagnose me, I'm just looking for support and to see if anyone has had any of the same problems.
It all started when I was 14 years old, I started menstruating at that age and they came practically once every 3 to 4 months. They would last for a month at a time and were very heavy for the entire time. The doctor's put me on birth control, which I only was on for a couple of months. Two months after I stopped I started having major problems. I woke up early in the morning and could barely move. It took a couple of hours for me to even get out of bed. I hurt practically everywhere, it was all I could do to walk because of the pain, and I felt weak. I went to the E.R. where I had false positives for lyme disease, and rheumatoid arthritis. I had a positive ANA, and afterwards they told me I had connective tissue disease. I went back later and still had a positive ANA, and my rheumatologist said that he was sure I had lupus. Well he left the hospital, and I was given a new rheumatologist. He basically said he was sure I didn't have lupus, since later on testing I didn't have any more positive ANA. The only thing I did have was an extremely high sed rate, and more false positive testing for lyme disease and R.A..
I'm now 21 and have had so many things for many years. I haven't had a positive ANA since the first two times. Anytime I get tested for lyme disease and R.A. I get false positives, which I have no idea what that's about. Unfortunately I still have a high sed, just not as high as it was when I first had all the problems. Over the years I've felt fairly good (compared to the beginning), until now. I now have more joint pain, I keep having pulling sensation in my chest, feeling fatigued, headaches, short-term memory loss, plus too many other things.
Unfortunately my rheumatologist just tells me he has no idea. I've been tested for HIV, I've had a bone scan for cancer, I've been tested for a blood clotting disorder (since I have a common lacy rash associated with it, and with my first child I had pre-term delivery, and my second I had a miscarriage), and things I can't even think of.
I was wondering if any of the things I've had could be associated with chemical poisoning, possible lead poisoning, or long-term mold exposure.

 
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Old 06-10-2009, 04:50 AM   #2
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Re: should I get a new doctor?

Maybe Fibromyalgia? Your rheumatologist should be able to check pressure points on your body. Google it maybe? I have a clotting disorder but have never had any issues with it EXCEPT when I tried to have a baby. 4 miscarriages & 1 live birth. Hmmmm...Well good luck. The people on here are great, you came to the right place! I was recently diagnosed with CVID and the people here are awesome ;-)

 
Old 06-10-2009, 08:35 AM   #3
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Re: should I get a new doctor?

why do you think -- or were you told---
all those positive tests for lyme were "false positives"?

 
Old 06-10-2009, 10:46 PM   #4
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Re: should I get a new doctor?

I'm sorry I don't really know. I wish I could be more help. Good luck.

 
Old 06-13-2009, 11:00 AM   #5
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Re: should I get a new doctor?

Quote:
Originally Posted by 22dreams View Post
why do you think -- or were you told---
all those positive tests for lyme were "false positives"?

Every time I get tested for lyme disease and Rheumatoid arthritis, it comes back positive, so they test again, then the test is negative. I've had the lyme disease tested numerous times and having the same thing happen. So the doctor's refer to it as a false positive.

 
Old 06-14-2009, 09:20 AM   #6
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Re: should I get a new doctor?

Given your history and symptomology, I very STRONGLY suggest that you pay a visit to the lyme board and request names of lyme-literate physicians in your area.

There is no test in existence that can rule lyme out or in.
Lyme disease can only be clinically diagnosed - by a competent doctor.
Unfortunately, False negatives are far more common than false positives.

Nine Reasons for False Negative Lyme Disease Blood Test Results

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

 
Old 06-26-2009, 12:45 PM   #7
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Re: should I get a new doctor?

I agree with the previous reply - all this is real and all this needs to be taken in consideration by a very good Dr who can put all your records for the last years and finally Dx you with something.

As far as I know lead poisoning comes with hair loss - I mean a lot of it.
Best of luck to you...

 
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