LymeNet Flash: Now I'm a bit confused.........

This is topic Now I'm a bit confused......... in forum Medical Questions at LymeNet Flash.

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Posted by smcadwell (Member # 7331) on :

First off, let me say Thank you for the warm welcome to this supportive chat.

Now on to my dilema. Please bear with me if I mispell or don't say this right because I'm still getting used to all of the lingo.

I called the doctor yesterday to get her to explain to me my test results and this is what she told me:
The test that was done was the ELISA or Western Blot test, and that was negative (She told that the first test was positive though..could have been the screening test?)because there has to be 5 bands that show up confirming Lyme Disease or else you don't have Lyme Disease....something about a IGg band? She tested for Ehrlichia and that came back negative, but is still waiting on the results from the other test for Babesia.

Other than that, she now doesn't feel it's hormonal, and that I must simply have some virus that will run it's course. I'm to wait 4 weeks and then see how I feel. In the mean time she gave me a perscription for Motrin 800mg and said that should take care of the bodyaches and headaches.

Okay..now I know that I'm not crazy, nor am I making these symptoms up.
I've asked for a copy of my tests results, but I won't be able to get them for two weeks.

Posted by cigi (Member # 6600) on :

Do you know what lab was used for testing? Whatever results you get, post here - explanation will follow with what banns are important enough to consider positive, you don't have to have CDC banns to be positive.

cigi

Posted by smcadwell (Member # 7331) on :

Thanks cigi....when I get the results I will definitely post them here. In my area, they are done by the local hospital lab. One other thing I was told, the other tests they don't like to do because they are more time consuming and cost alot more. Hmmmmm...

quote:
Originally posted by cigi:
Do you know what lab was used for testing? Whatever results you get, post here - explanation will follow with what banns are important enough to consider positive, you don't have to have CDC banns to be positive.
cigi

[This message has been edited by smcadwell (edited 19 May 2005).]

Posted by Monica (Member # 224) on :

Sounds like you are on the duck (doctor ignorant of Lyme disease) carousel. Please get off before you are the victim of medical neglect and ignorance!!!

Yes, post your results here. There are only two labs in the country that know how to properly test and they are Igenex and Bowen. (If I am wrong and there are others, I'm sure someone will correct me.)

Please get an LLMD in your area as quickly as possible.

You can get help, but unfortunately, sometimes the fight for care is long and draining.

You must be tested for co-infections by them as well.

Posted by robi (Member # 5547) on :

Your doctor is literally playing with your life. Precious time is being wasted. If you get proper treatment NOW you can save years of pain. If you give the bug 4 weeks to dive deep in your tissues and reproduce we wil be seeing you around here for a long time.

You have the chance we all wish we had. Please do everything you can to not let it pass. It is not that your Dr. is knowingly harming you, it is that they are given the wrong information.

Your doctor has changed her mind several times already.

Read this: http://www.lymemed.nl/discussie/point&counterpoint.pdf

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by robi:
Your doctor is literally playing with your life. Precious time is being wasted.
------------------------------------
Your doctor has changed her mind several times already.

The ELISA and Western Blot are two DIFFERENT tests, not one test as you have indicated that she told you.

Why is it going to take her two weeks to get the test results to you?

Get help now....and keep reading!

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

Posted by Bill ATL (Member # 7817) on :

My first round of testing was like yours. Positive Lyme Screen (Elisa Test) mine was (1.57), but then the Western Blot was negative with no bands showing anything. My doctor ALSO said I was negative as yours has.

I was able to get 3 weeks worth of Doxycycline and that made me feel 100% better than I was. I still had neuro symptoms, and happen to go to an infectious disease Dr., who tested me again for Lyme (about 1 month later). This time I had band 23 of the western blot come back positive! This is one of the "big three" bands that the CDC considers you positive for Lyme (have to have 2 of the 3). But my LLMD considers you positive with just 1 of them.

Finally my LLMD tested me (IgeneX Labs) and they found all three plus some others to be positive. Labs are different. The IgeneX labs test for several strains of Lyme and co-infections.

My point is that your tests can change, especially if you are on some sort of antibiotic treatment.

Your next step, if you feel that you are not getting better, is to find an LLMD. Regular docs just don't know the complicated details of this disease. Don't waste anymore of your time and $ on regular docs.

My best advice is to "Trust and believe in yourself, use your intuition, and be determined to get rid of this!"

This forum, and your own determination will be your best resources in this battle.

Good Luck my friend...we'll be here for you!

Don't forget that this CAN be beat.

Bill

Posted by smcadwell (Member # 7331) on :

Thank you Monica....someone did email me with the name of a doctor in my area that might be willing to help me so I'll be taking that step tomorrow.

quote:
Originally posted by Monica:
Sounds like you are on the duck (doctor ignorant of Lyme disease) carousel. Please get off before you are the victim of medical neglect and ignorance!!!
Yes, post your results here. There are only two labs in the country that know how to properly test and they are Igenex and Bowen. (If I am wrong and there are others, I'm sure someone will correct me.)
Please get an LLMD in your area as quickly as possible.
You can get help, but unfortunately, sometimes the fight for care is long and draining.
You must be tested for co-infections by them as well.

Posted by smcadwell (Member # 7331) on :

Hi Robi,
I agree with you that I need to get proper treatment now. Thank you for the link to that article. I read it and am going to try and print it out and give it to my doctor tomorrow. Thank you again. ~ Sue

quote:
Originally posted by robi:
Your doctor is literally playing with your life. Precious time is being wasted. If you get proper treatment NOW you can save years of pain. If you give the bug 4 weeks to dive deep in your tissues and reproduce we wil be seeing you around here for a long time.

You have the chance we all wish we had. Please do everything you can to not let it pass. It is not that your Dr. is knowingly harming you, it is that they are given the wrong information.
Your doctor has changed her mind several times already.
Read this: http://www.lymemed.nl/discussie/point&counterpoint.pdf

Posted by smcadwell (Member # 7331) on :

Hi Lymetoo,

Thank you for the info, the way she said it sounded like the ELISA and the WB were one and the same. It's possible that she's not aware of that as well. I was told that I would have to go to Medical records at the hospital and fill out a form to get the test results. I still think that I can go to her office tomorrow and request a copy of whatever paperwork the lab sent her; wouldn't you think? They are my test results after all.

quote:
Originally posted by Lymetoo:
[QUOTE]Originally posted by robi:
[b]Your doctor is literally playing with your life. Precious time is being wasted.

Posted by smcadwell (Member # 7331) on :

Hi Bill ATL,

Thank you so much for sharing your info with me. Something in my gut is telling me there is more to this than what those test results showed. Why else would I still be having these symptoms? I certainly don't want to wait 4 weeks to "see how I'll feel". I am determined to get the treatment that I need and to beat this through antibiotics and whatever other resources I can find that might help. I have to be on top of my game because I have a 9 year old little girl who has spina bifida that needs me.

quote:
Originally posted by Bill ATL:
My first round of testing was like yours. Positive Lyme Screen (Elisa Test) mine was (1.57), but then the Western Blot was negative with no bands showing anything. My doctor ALSO said I was negative as yours has.
I was able to get 3 weeks worth of Doxycycline and that made me feel 100% better than I was. I still had neuro symptoms, and happen to go to an infectious disease Dr., who tested me again for Lyme (about 1 month later). This time I had band 23 of the western blot come back positive! This is one of the "big three" bands that the CDC considers you positive for Lyme (have to have 2 of the 3). But my LLMD considers you positive with just 1 of them.
Finally my LLMD tested me (IgeneX Labs) and they found all three plus some others to be positive. Labs are different. The IgeneX labs test for several strains of Lyme and co-infections.
My point is that your tests can change, especially if you are on some sort of antibiotic treatment.
Your next step, if you feel that you are not getting better, is to find an LLMD. Regular docs just don't know the complicated details of this disease. Don't waste anymore of your time and $ on regular docs.
My best advice is to "Trust and believe in yourself, use your intuition, and be determined to get rid of this!"
This forum, and your own determination will be your best resources in this battle.
Good Luck my friend...we'll be here for you!
Don't forget that this CAN be beat.
Bill

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by smcadwell:

I still think that I can go to her office tomorrow and request a copy of whatever paperwork the lab sent her; wouldn't you think? They are my test results after all.

You got it!!! They belong to YOU and you shouldn't have to wait for 2 weeks!

Yes, your dr probably thinks they are the same test. Oh boy.

sm......You can reply by clicking on "Post Reply" ...unless you like quoting everyone one.

You're doing a good job, my friend!!

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

Posted by Lymetoo (Member # 743) on :

bringing this up for sm.......

when you can't find your "thread", just go to the bottom of the Medical Questions page and click on the number "2"....you will see page two of topics.

Things get pushed back when other topics receive more replies than the one you are looking for.

Hope that makes sense!

Posted by Kara Tyson (Member # 939) on :

You have to have 5 bands to be in CDC STATISTICS, but not to be diagnosed. This is a common misconception.

Posted by DolphinLady (Member # 6275) on :

SMC,

You have the right attitude, you need proper treatment now. And yes, you have to stay strong for your little one.

See a lyme specialist for this. It's the only way because lyme and co-infections are very tricky to treat.

The sooner you get on the right treatment, the easier, faster and cheaper this will be.

Best wishes.