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Do I really have lyme?

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Posted 1/27/2010 1:54 AM (GMT 0)
Hello,

I am a 60 year old woman and  new to this and confused if I really have lyme or not. Three months ago I was bit by a tick which really hurt at the time.  I developed 4 small red blotches on my upper leg which formed a circle.  It bacame quite painful with a hot burning sensation.  One month after the bite I started coming down with pain in my joints upon awaking.  Following a week of this I had a TERRIBLE POUNDING HEADACHE ON THE LEFT SIDE OF MY HEAD.  The next thing I knew I lost my balance and was rushed to er with a stroke.  Iwas  in icu for about 5 days and was told my stroke was caused by atrial fibulation.  My blood showed I was extremely anemic and my rhuenmatoid factor was off the charts.  Also had elevated liver enzymes.  None of the doctors wanted to believe I had lyme as it did not show up on their standard test.  Since then I found a lyme specialist .  He has run tests which were indeterminate, but thinks my symtoms verify it. 

I'm home now and seeing more doctors  (rhuematoid doctor says my ra factor on the blood tests is off the charts!  Does lyme cause ra or just feel like rhuematoid arthritis?

The lyme specialist has me on an antibiotic treatment program and I am feeling a little better.  I AM STILL EXTREMELY TIRED (CONSTANTLY YAWNING) and am feeling cold a lot of the time, which is so unusual for me as I always had really warm hands even while outside on a cold day.  Also have creaks in my neck when I turn it. 

I would appreciate any comments or input.  ... Thanks

 

Posted 1/27/2010 2:10 AM (GMT 0)
I have lyme, but my ra factor is well under control.
ra is autoimmune disease and if ra is off the charts, then your joint pain could be explained by those. question is, is it possible for lyme to cause ra to go off the charts? ask the llmd.

looks like you still have caught the disease relatively early, even if you were to be positive for lyme, (symptoms tie in), no doubt.
my syptoms don't tie in COMPLETELY, but they warrant enough to say I have lyme, as my blood test for lyme is off the charts. so basically lyme is possible with a good blood test and with a negative blood test. really rely on symptoms to do proper diagnosis and if lyme abx are making you herx, chances are you may have lyme.

still the best test (highest predictive value- i think 60%) test for lyme is for testing bb. other co-infections testing has even poor predictive value. just my 2 cents.
Posted 1/27/2010 3:01 AM (GMT 0)
Hi Bella49,
Welcome to Healingwell.
First off Lyme disease is a clinical diagnosis. This means a doctor should look at your history, symptoms, and blood work to make a DX

History....exposure to ticks....yes

symptoms....rashes, joint pain, fatigue, weakness....yes

blood work....indeterminate

Blood testing for Lyme disease and other TBI (tick borne infections) is very inaccurate. Between 30% to 50% of people with TBI will show negative with early blood tests, and go undiagnosed or wrongly diagnosed with other conditions such as RA, MS, fibro, IBS, and many other conditions. A bull's eye rash, or "circular rash" is a sure sign of Lyme disease.

Would it be possible to have RA, and Lyme.....sure
But I would have to ask, did you have joint pain prior to your tick exposure?? With Lyme disease you really have to be your own advocate. What is your heart telling you?

Best wishes
Posted 1/27/2010 5:06 AM (GMT 0)
Just found this on Google...seems you can test positive for RA when what you really have is Lyme.

"Lyme also will show a high RA factor, which is why it is often misdiagnosed. ... Lyme Disease imitates just about every autoimmune disorder there is!"

This is why we have to be pro-active where our health is concerned.
Posted 1/27/2010 6:08 AM (GMT 0)
Can someone explain how to get an accurate test to determine if I have Lymes disease? It seems the blood work I have had done so far might not show any indications, even though I am highly suspicious I may have it.
Thanks
Palden
Posted 1/27/2010 6:18 AM (GMT 0)
Hi Palden,

Welcome to the forum!

The first thing you need to do is find a Lyme Literate Medical Doctor. I'm not sure if a regular MD will send your blood off to IgeneX where they use a Western blot test. You can ask though. Even though the test is not that accurate, it may pick up Lyme specific bands that indicate you having the bacteria in your body. this is what Lyme Doctors look at, along with your symtoms to make a diagnosis.
Posted 1/27/2010 8:05 PM (GMT 0)
Thanks for the input.  I forgot to mention the lyme doc also suspects babecia also transmitted by ticks.  MY blood work was sent to Igenex and showed two positive bands on antigens.  I am currently taking

biaxin 500 mg twice a day

nystatin 2 a day

mepron 1 tsp. to kill babecia  

I am just a little confused because of the recent stroke and its symptoms could explain my aches and tiredness.  My gut tells me I do have lyme and I was researching  the possibility before the stroke since I knew I was bitten by a tick in eastern Oregon at a horse auction.

I got a rash right away and it felt like it was on fire.

 

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