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Old 12-19-2011, 11:20 AM   #1
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Is it Lyme Disease or Could It be Lupus

I'm a 46 yr. old female with a long list of symptoms dating as far back as five to six years or longer. Symptoms include or have included, fever (as high as 103), mild sore throat, swollen lymph nodes in the groin area, rash on hands, feet and arms, swollen ankles and feet to the point that shoes won't fit, joint pain in the knees and arms, muscle pain in the thighs, severe fatigue, mouth sores on inner cheecks, mental foginess, hair loss, etc.

I was diagnosed with Lyme Disease with the test confirmed by three different blood tests. I was also diagnosed with Mono but feel as though not all of my symptoms fit either of these two categories. When referred to an Infectious Disease Dr, I was told that I never had Lyme because your body produces certain antibodies, etc., etc.

The more I read about Lupus, the more I think it fits with the symptoms I've had for years; from a spontaneous phneumothorax to pleuracy, fatigue, etc.

Why would three blood tests confirm the Lyme Disease diagnosis and an Infectious Disease Dr. tells me that's not what I have? Any insight would be much appreciated.

 
Old 12-19-2011, 11:54 AM   #2
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Re: Is it Lyme Disease or Could It be Lupus

If you have had 3 positives on lyme test then you best search out a lyme literate medical doctor. (LLMD) They are specialist in Lyme disease and the co-infections that go along with it.

At the top of this board you will see how to share doctors names and Lyme newbies...

Many of us have been told we had lupus when actually it was Lyme.
You most likely do have chronic Mono also.
You do not have to display all the symptoms to have either.

Majority of I.D. do not specialize in Lyme. I went to a few they phooed the idea of lyme. And I remained untreated.

I hope you find your answers soon!

Jodie

 
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Old 12-20-2011, 10:26 AM   #3
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Re: Is it Lyme Disease or Could It be Lupus

Thanks for the reply Jodie.

I'm not sure what to think anymore. During the initial phase of my illness (about 8 months of sickness prior to diagnosis), I honestly thought I was going to die. My temperature was 100 to 103 for 28 days. Nothing would break it. My feet and hands would stay so swollen, numbness, tingling, severe muscle aches, pain everywhere, dizziness, etc. etc. etc.

My PCP diagnosed the Lyme and treated with Diox for 45 days. Initially, I felt better after taking the meds but did not go through the "getting worse before getting better" phase I've read so much about on these boards. After seeing the Infectious Disease doc, my PCP now believes it was just the Mono that made me so sick. I refuse to believe that. Mono doesn't respond to antibiotics but whatever I had did.

Now, nearly three months after antibiotic treatment, some of my original symptoms are beginning to return. The bottoms of my feet ache so badly, it hurts to walk or stand at times. The fatigue is severe and the brain fog leaves me feeling so inept and frustrated at times.

It is very deflating to think that I may never get past feeling this way and/or know for sure what is truly wrong with me. Going to the doctor right now is not an option. I've depleted my savings, used every bit of sick time and vacation time from work and am playing catch-up to try to pay the medical bills I've already acquired. Not to mention the fact that I am a single-parent.

 
Old 12-20-2011, 11:50 AM   #4
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Re: Is it Lyme Disease or Could It be Lupus

The bottoms of my feet hurt really bad at one point also...I have heard it could be a symptom of Bartonella.

You can also look into the Pure Salt and Vitamin C protocol. It is cheaper than a doctor and helps with many ailments for some it has put their Lyme into remission.

Your symtpoms do not sound any different than many of us. I think positive lyme test, especially 3, means you have Lyme.
Not everyone eperiences the herx reaction to antibiotics.
I do advise you to get on a combination of antibiotics, there are 3 stages to the bacteria, the nymph, the adult and it also creates a cyst around itself for protection. So you need a cyst buster such as flagyl to go with what you are taking. It takes some of us years with different combinations to get better.

I wish you luck on your treatment.

Jodie

Last edited by jojo; 12-20-2011 at 11:50 AM.

 
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