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» LymeNet Flash » Questions and Discussion » Medical Questions » Should I get the test?

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Author Topic: Should I get the test?
NUTBOBUTT
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Member # 7242

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I'll try to keep this as short as possible. I started with muscle cramping between shoulder blades on November 2. The pain throughout the month radiated to my R shoulder and and then to R ankle and hips.

Couldn't figure it out til I awoke in the middle of the night end of Nov. and remembered that late summer I had a bullseye. 2 of my family members also remember me making a comment about it but did not think anything of lymes.

Went to PCP and he ordered many blood tests. All were negative (including ELISA) except sed rate(which shows inflammation).
He did put me on 20 days of Doxy(don't remember the dose).This was now December. I did not get better at all in fact I felt worse.

After more blood tests in late Dec. with sed rate being in the 80's. I was put on a heavy dose of Prednisone and was given a referral to see rheumatologist. Went to see him and he was "puzzled" as to what could be wrong with me.(He also did an Elisa test early Jan. =Negative)

To make this as short as I can I basically have good and bad days. My mornings are especially tough. I am 36 and feel like I am 80 often needing help getting out of bed and getting dressed. I had written off lymes after second Negative test until just recently when I went to the U of M and saw a rheumie. I left there feeling like I probably had cancer because I "puzzled" him also.

On the 19th of April when I saw my rheumie I convinced him to run a Western blot (which was done at Mayo) and it was =Negative. Needless to say he started me on Minocycline and I am currently taking Prednisone (15mg per day and weaning down each week). My sed rate has been as high as 110 so I have had some major inflammation going on. Negative bone scan done too.

And finally my ? My PCP ok'd western blot through Igenex Should I go through with it or because of steroid will it be neg.?


Posts: 109 | From MN | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by NUTBOBUTT:
And finally my ? My PCP ok'd western blot through Igenex Should I go through with it or because of steroid will it be neg.?

These "doctors" who are PUZZLED by a man with a history of an EM rash, pain, high sed rate, etc, floor me. We call them "ducks" around here....as in quack, quack.

OK....Do the WB, knowing it may come back negative. STAY AWAY from the prednisone in the future!

Also keep in mind that this rheumie will NOT know how to read the WB....so please ask for a copy of it so we can interpret it for you. I'm serious.

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html


http://www.anapsid.org/lyme/matthewgoss/index.html

BTW, anyone with an EM has Lyme. So it really doesn't matter what the test says. Next order of business is finding a doctor who will treat you long term, because you're going to need long term treatment.

Many people in MN travel to MO to see this dr. He's the best. http://flash.lymenet.org/ubb/Forum3/HTML/004140.html http://www.drcharlescrist.com

------------------
oops!
Lymetutu


Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
HEATHERKISS
Frequent Contributor (1K+ posts)
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yes, I tested positive from Igenex even though I had been given Steriods in the past.

Go for it!

It's a clinical diagosis anyway. So it's nice to have a positive but you need to be treated no matter what.


Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
NUTBOBUTT
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Thanks! I think I will. It's just a lot of money. But if it does come back positive I will be happy just to have a diagnosis.
Posts: 109 | From MN | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
HEATHERKISS
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MDL LABS specializing in Lyme testing also and they take all insurance (cheaper) http://mdlab.com/html/home.html
Get a kit from them.

I don't know about Bowen (pricing?)


Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Go with Igenex.
Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Nancy-OH
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Geez, your story mirrors mine in so many ways!

Lyme tests are only 50% accurate, ya know.

I wouldn't waste my money. I would find a good LLMD and tell him your story.

Lyme is a clinical diagnosis.

I don't usually give advice, but you need to get off the prednisone. It will make the Lyme worse.

The bullseye rash is indicative of Lyme and nothing else.

Time is critical to treatment so please don't delay.

Best wishes,
Nancy


Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003  |  IP: Logged | Report this post to a Moderator
   

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