Saw my GP tonight and she is sending me to have a Western Blot Test

[drsdonthelp]

Hi everyone. I had gone to see my family doc. tonight because my kids and I have sinus infections.. while I was there I mentioned to her about my concern of Lyme Disease, and reminded her of my cat scratch fever from years ago. I told her how worried I was for my children, and she totally agreed. She also mentioned a LLMD in Albany, Ny where she sends her lyme patients to. I thought she was going to think that I was a nut, but she was actually impressed and happy that I am in control of my health and my children's health. I am so grateful for having her as my fam. doc. She said she will test me with the Western Blot test.. I have no idea what that consists of but she said that if I test pos. then she wants to test the children as well......... Thank God, I pray for some answers.

Can anyone tell me what this test consists of , is it just bloodwork,?
Thanks,
Pam

[wonko]

Lyme disease is a clinical diagnosis---No test can rule it in or out conclusively. This fact is stated on the International Lyme And Associated Diseases Society website under "basic information" about Lyme.  They also report that of patients with culture-proven Lyme disease, 20-30% remain seronegative on western blot.  Yet many doctors will dismiss the possibility of Lyme based on test results.  This is why it is critical to seek out a so-called LLMD to get evaluated for Lyme and tick-borne co-infections.

[drsdonthelp]

hi Carrie, it was called western blot. Had it done in Feb. and just couple weeks ago. Nothing showing or indicating lyme.

Pam

[carrie235]

Hi Drsdonthelp:

Did you get a regular lab test or did you get tested through Igenex?  I tested negative on regular lab test, but postive through Igenex.

[JackieCalifornia]

I think by law they have to give you copies of your records, or at least the test results.  You paid for them, they're yours.  I'm glad you have a doc who is concerned and caring -- those can be hard to find.  Take care

[drsdonthelp]

Thanks Jackie. I will ask for my copies, I'm sure my doc. will be fine with that, she is very concerned for me.

[JackieCalifornia]

Did you get copies of the test results?  Different docs read them different ways.  The tests don't scream YES or NO -- they are subject to intepretation for a whole lot of reasons.

If you did not get copies, the doc should send them on request or at least leave them at the desk so you can pick them up.

If you want to post the detailed results here, we can weigh in with what we've read.  

[drsdonthelp]

Lyme test and all other infectious and inflammatory blood tests all negative. Square one here I come.

[drsdonthelp]

Jackie,

You are right, and I shouldnt get my hopes up, because everytime I think I am going to get answers, I don't.

I noticed that whenever I do that it fails, if I dont expect answers thats when it will happen.

So crazy!!!  LOL

I will try to stay positive for a result that will help me, but I will not put all of my eggs in one basket.
Thanks again,
Pam :)

[JackieCalifornia]

As a mild caution, try not to get your hopes up toooooo high for a truly absolute, 100% conclusion about what ails you, because there is much controversy about diagnosing Lyme, not to mention about treating it.

I don't want to bring you down, but want to caution moderation as you proceed.  Two things:  

(1)  neurologists are not known for 'believing' in Lyme, so I would take a huge grain of salt with any negative reaction you get from the neuro about the possibility of Lyme (or for that matter, the possibility of something like MS, because when neuros don't allow themselves the option of a Lyme diagnosis, it often leads them the next choice, which can be MS.)

(2)  your Lyme tests may not come back screamingly positive for Lyme, even if you are screamingly ill with Lyme.  This is for several reasons:  the tests are not magic and don't give slam dunk answers; when you've been sick for a while, your immune system may be suppressing the infection to a level that keeps the test from being very positive; you may have coinfections that are not measurable on Lyme tests, but that are making you ill; and the tests are not the final answer, instead your doc's understanding of the subtleties of the disease are what is most important, and the test results are just one factor in that judgment.  

As a society, we have become used to binary results:  yes/no; up/down; black/white; and nothing in between, when the universe is more comfy with 'maybe', 'middling', and 'grey'.  Good for you for pursuing this, and I would also pursue finding out what is up, but want you to keep your expectations at a level that won't leave you devastated if the answers are not absolutely clear.  It's a journey, and the good news is that you are on the road.

[drsdonthelp]

Just an update!! Today, I got the script from my GP, and then did my bloodwork. I also called the neurologist in Rochester and have my Evoked Potential and EEG test set up for May 5th. Maybe this can be the end of my lllllloooooonnnnngggggg searching of what is wrong with me and get treated properly.

Thanks for always being so helpful to me,
Pam

[JackieCalifornia]

Your doc will make your follow up appointment for a date by which the test results are back.  I imagine the processing time varies a bit depending on workload.  I think my initial follow up appointment was 2-3 weeks.  

I got the blood drawn the next day after I got the test order from the doc, to be *sure* the results were back by the next appointment.

[drsdonthelp]

Hi Jackie,

How long does a test like that take to get results back? And yes, I am very lucky to have a doc. like her, she is the best!!

I think I will be able to get the blood done this week. I just got a letter from the neurologist in Rochester, they are waiting for me to get the evoked potential test done also.. Maybe with one of these tests, I may get an answer.

Thank you for being so helpful,
Hugs,
Pam

[JackieCalifornia]

Hi

Yes, it's just a blood draw from your arm.

This is very good news that your family doc is so tuned in!  That can be a big problem for many of us who have to struggle to find someone understanding and well read on the topic.

Best --