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» LymeNet Flash » Questions and Discussion » Medical Questions » Please advise

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Author Topic: Please advise
Roughfisher
Junior Member
Member # 13739

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Hi, I'm Corey, 35, previously healthy male living in Minnesota.

I'm a hunter, trapper, and fisherman and I get many tick bites every year. In 2004 I had a deer tick bite which caused a rash. I started having some shoulder pain. Since other people in my family have had Lyme's disease multiple times, and been treated for it, I got tested and the results were negative. I continued to experience pain, but it was tolerable.

In 2006, I developed another rash, presumably from a tick bite. Over the next year I developed severe joint pain and muscle aches, so I went to the doctor who diagnosed tendonitis, basically saying that I had hurt myself. I insisted on a Lyme's test since I had the same symptoms my father had during his two bouts with Lyme's disease. Test came back normal, doctor referred me to an orthopedist and prescribed anti-inflammatory drugs.

Since then, I've gotten significantly worse. I have severe neck stiffness and pain, headaches, severe and constant joint and muscle pain (shoulders, hips, knees, fingers), muscle spasms, insomnia, exhaustion, numbness in my hands, ringing in my ears, and cracking and popping when I move my neck. Over the last few days my jaw has begun hurting a great deal. In the morning I can hardly walk or drive and I fear that since it seems to be getting worse very quickly, I will soon be completely debilitated. It' making me very depressed.

I don't know what test was done on me, the test result simply said "LYME NORMAL". Besides going in for these two blood tests in 2004 and 2007, I have only been to a doctor twice in the last ten years, both times to have simple cysts removed.

I fear that going back to my doctor will be fruitless. She has insisted I see an orthopedist (I can't get an appointment for several weeks) and even though I don't believe that an orthopedist can help me, but until I do that I'm not going to be given the time of day. On the other hand, my symptoms have become much worse since I last saw my doctor, and symptoms which I had previously believed to be unrelated phenomena are probably worth mentioning, now that I am aware of their possible connection to Lyme's (specifically, the muscle spasms, numbness, ringing, neck cracking, and sleep issues - I went in for severe joint pain mainly in my shoulders). Also after reading about Lyme's online, I called the clinic to inquire about the accuracy of the Lyme's test that was performed on me, and was told it is 100% accurate and that if the test was normal, I simply do not have Lyme's.

What are my options? Could I have it, and could I have had it for years without it showing up? I'm not a pushy person and I avoid going to the doctor whenever possible. I live in the Twin Cities area.

Posts: 3 | From Fridley, MN | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
Cobweb
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You didn't said what lab did the testing???

NO lab can claim 100% accuracy for testing for lyme-so whatever lab-it probably was not a reliable one.

LYME NORMAL??never heard that term before either. Usually it is either Lyme positive or negative.

So my advice would be to get retested by a lab such as Igenex-there are others , just not sure what they are.

But also go to doctor knowledgable about Lyme, because it can be clinically diagnosed even if labs are negative.

Cobby

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DesperationIn
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You may have gotten the ELISA test from your doctor and not the western blot test. ELISAS are notorious for producing false negatives and a western blot test is considered to be a much better test for lyme disease.

With your symptoms, you should definitely make an appointment with and see an LLMD- a lyme literate madical doctor. The best chance of getting an accurate lyme test is testing from a lyme specialty lab like Igenex- at least a western blot test.

You can post on the seeking a doctor forum and people will message you with the name of a good lyme doctor in your area. This doctor will run all the correct tests.

If it takes a long time to get in to see the LLMD, see another regular doc who will be more open minded and may prescribe you an antibiotic like doxycycline for a month to see how you respond to it. You can also get a test kit from the Igenex lab and send your blood to get tested so you already have a key test done when you see the lyme doctor.

Given your father's and family's experience with lyme, you know this is serious and not something to ignore. Please get yourself to an LLMD!

-Despin

Posts: 163 | From Cleveland, OH | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
Truthfinder
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Hi, Rough - Welcome to LymeNet!

I think ordering your own test kit(s) from Igenex is a very good idea if you have trouble finding a good Lyme doc right away. The test kits are free and there is no obligation to use the test kits once you have them.

In addition to the Lyme kit, you may wish to consider ordering a kit to test for common co-infections of Lyme: Babesia, Bartonella, and Ehrlichia. These co-infections can be very important when it comes to treatment. Although there can still be false-negative results, a positive result can be very helpful to your doc.

Are you still on anti-inflammatories?

The reason I ask is that before I came to LymeNet, I read that you have to be off anti-inflammatories for 6 weeks before you get tested to insure best results.

Perhaps someone else can address this who is more familiar with the Igenex testing. Or perhaps Igenex can advise you about this if you call them.

Here is a link to the Igenex test kit page:
http://www.igenex.com/formset4.htm

[Smile] I think you will find you have come to a good place to find answers.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

Posts: 2966 | From Colorado | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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I am simply shocked that the lab claimed 100% accuracy!!! Lyme is a clinical diagnosis, even according to the CDC.

I would see a Lyme Literate physician (LLMD). You can post under the seeking doctors section and someone will send you information on one near you.

Most doctors are not well-versed in Lyme diagnosis or treatment.

Go to www.ilads.org for more info on Lyme diagnosis and treatment.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Michelle M
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Good morning Corey. You've gotten some great advice above!!

I like your name. I really love fishing myself, and try to sneak off and flyfish every chance I get. I live in trout central here in northern California!

Did you ever photograph one of your rashes or show them to one of your doctors? Because actually, the rash itself is diagnostic for lyme!! No further testing required!!

Doctors are supposed to know this, but sadly, most doctors are extremely biased against the very mention of the word "lyme" and will work very hard to prove you DON'T have it. It's very curious behaviour.

Not only that, but as mentioned above, lyme is a CLINICAL DIAGNOSIS. What that actually means, in real life, is that the doctor is supposed to take a history from you, evaluate you and your symptoms, and be able to tell whether you have lyme just based on that plus his judgment and expertise, without even relying on some test. That's because the tests are SO ROTTEN!!! It's amazing anyone would tell you different! Even the CDC on its website will tell you that!!

This is just one of the reasons (and there's about a zillion) why it's imperative to get an LLMD.

Because even if you somehow convince your regular doc that you have lyme (assuming you do), do you actually think he's gonna know how to treat you? WAY unlikely!! He'll give you way too low a dose of antibiotic, and for not nearly long enough.

He'll be guaranteed to not know SQUAT about co-infections such as babesia and bartonella, which by the way you're HIGHLY likely to have contracted along with lyme.

Please post in "Seeking a Doctor" and find someone who knows what they're doing. We want you to keep learning, but trust me -- you're going to feel a LOT better when you find a doctor who knows more than you do about lyme.

Good luck, and keep us posted!!!

[group hug]

Michelle

P.S. Here's some
California fish!!

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Roughfisher
Junior Member
Member # 13739

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Thank you all for the replies; I've been away from computers for a couple of days and unable to reply.

I apologize for the onerously long paragraphs; I was almost pouring my heart out about this here and proper composition and grammar were not attended to.

To clarify about the tests: I did not receive my actual lab test result. What I got was the clinic's summary of the test results; there were a number of tests done, and the lab(s) that did them was/were not specified. It said "LUPUS NORMAL, R ARTH NORMAL(?), LYME NORMAL".

The LAB did not claim the test was 100% accurate, it was the staff at the clinic.

I had no idea that test kits were available - I would like to do this if at all possible. If I understand correctly these test can be performed yourself? I will also post in the seeking doctor forum.

There have been four Lyme cases in my extended family, two in my immediate family, with people who have the same kind of lifestyle as me. In every case no treatment was applied until a blood test came back positive, and the test was not performed without either a bullseye rash or much cajoling.

I didn't photograph the rashes. Had no idea it would be important.

PS - Michelle - your fish pics are astounding! I'm jealous. I had to fly in to Alaska to find fishing like that. Here's my Alaska pics (I'm the one with the bigger beard, which I grew just for the trip):
Roughfisher in Alaska

Posts: 3 | From Fridley, MN | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
lymednva
Frequent Contributor (1K+ posts)
Member # 9098

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I believe that having a rash is enough to get you a Lyme diagnosis, especially with a known tick bite.

You should not need a test with those two together, like you mentioned in your first post.

A LLMD would still probably want a Western Blot by Igenex to give more information, but you can find that out when you get in contact with the office.

You can get the kit on your own, but you will need a doctor's office or lab that is willing to do the blood draw.

Please go to Seeking a Doctor Forum and post your state and that you are looking for a LLMD.

Unfortunately there are not as many of them as we need, but someone will be able to help you find your way to a good one.

Good luck!

--------------------
Lymednva

Posts: 2407 | From over the river and through the woods | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
CaliforniaLyme
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Everything Michelle said*)!*)*!)!!!!!!!
(Now those are FISH!!!!!!!!!!!!!!!!!!)

Lyme IS a clinical diagnosis.
That is the way Lyme is supposed to be diagnosed- the tests suck!!!

Best wishes,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

Posts: 5639 | From Aptos CA USA | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200

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Outstanding trip photos Roughfisher!! Whoa! Trip of a lifetime! Glad to see you are a fly fisherman!! Do post for an LLMD and don't just settle for a family doctor. You will not get the right type of care, you won't get checked for co-infections, and you won't be treated long enough or strong enough.

Trust me -- been there, done that!! It cost me a couple fishing season!! Not that there's any such thing as a "season" for us die-hards!! [Big Grin]

Michelle

Posts: 3193 | From Northern California | Registered: Apr 2005  |  IP: Logged | Report this post to a Moderator
   

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