Have you been properly tested for Lyme poll?

[Sushi]

@roxie60

Doesn't your insurance pay for Igenex tests? Medicare pays for them.

Also, the strain of Bartonella that some doctors are finding most often in ME/CFS patients isn't bartonella henselae, but another strain of bartonella that Igenex doesn't test for. Galaxy lab seems to have the most comprehensive bartonella testing.

Yes, it is very frustrating and confusing!

Sushi

 

[vamah]

@vitamink I did not know they allowed separate tests, thx!. I'm thinking low chance of babesia but greater chance of bartonella just based on places I have visited. Gotta get the first results beofre spend anymore money and see if they reflect what the CD57 seems to indicate.

I will be relieved to finally get n answer if I do have Lyme but also fearful of antibiotics cause I have hd bad reactions in the past

If you want to test for bartonella, the best lab is probably galaxy labs in North Carolina. The doctor who developed that test is one of the leading experts on bartonella, I can't remember his name right now. If I recall, it is pretty expensive, but igenex tests are expensive too. If the cost is about the same, I would go with the galaxy one.

I understand your frustration with doctors' glacial pace in treating people. Do you at least have a doc who believes that chronic lyme is a real thing and will treat you for it if your test comes back positive?

 

[roxie60]

I would love to be able to hike again
Here is a couple of video I thought did a great job covering Lyme and its issues (kind of dated but you will get an idea of how far we have come....or not)

Part I

Part II

 

[JT1024]

I could not vote since the options listed did not represent my experience. When I was tested for Lyme, I was initially tested for Lyme only by Igenex. Given the results, I had additional testing for co-infections. Those results were positive for Anaplasmosis and Babesia.

This is not surprising since my dog (my avatar) tested positive for Anaplasmosis and we were out walking in tick infested areas frequently.

 

[vitamink]

If you want to test for bartonella, the best lab is probably galaxy labs in North Carolina. The doctor who developed that test is one of the leading experts on bartonella, I can't remember his name right now.

edward breitschwerdt. here's one article by him: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546763/
and another good article on bartonella and lyme: http://archneur.jamanetwork.com/article.aspx?articleid=780359

 

[vamah]

edward breitschwerdt. here's one article by him: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2546763/
and another good article on bartonella and lyme: http://archneur.jamanetwork.com/article.aspx?articleid=780359

That's him. Thanks.

 

[Creekee]

Anyone else laugh each time they read the title of this thread? What the heck is "proper" Lyme testing???

 

[roxie60]

@Creekee just saw your haplotype - I am U5a1a1 ..... got to think there is some close relation? I mean compared to all the haplotypes.... cousins under the skin???

 

[Creekee]

@Creekee just saw your haplotype - I am U5a1a1 ..... got to think there is some close relation? I mean compared to all the haplotypes.... cousins under the skin???

Roxie...CUZ! How cool is that? I've so rarely come across any of our type. Is U5a1a1 your maternal haplo?

I'll be here celebrating new family!

 

[roxie60]

Yes, maternal

 

[vamah]

Anyone else laugh each time they read the title of this thread? What the heck is "proper" Lyme testing???

It is lyme testing that has very good manners and is always dressed impeccibly.

 

[roxie60]

It is lyme testing that has very good manners and is always dressed impeccibly.

good to see you haven't lost your sense of humor!!!

 

[Creekee]

It is lyme testing that has very good manners and is always dressed impeccibly.

LOL! Thanks, @vamah. Now I'm gonna laugh TWICE each time!

 

[roxie60]

I've now added my vote. Taken basic IGenex test and it was negative

 

[vitamink]

I've now added my vote. Taken basic IGenex test and it was negative

so you didn't have any bands present?

 

[filfla4]

Can't take the poll. I was tested by PCR (positive), confirmed by DNA sequencing. I never took a basic test.

 

[roxie60]

so you didn't have any bands present?

Dont know, nurse was suppose to put in mail to me this past Tuesday. I called today and she may have forgot so putting in mail again. Wondering if I should just drive there tomorrow if feel up to it and get copy. So I cant comment on bands yet. Nurse/doctor said it was negative.

 

[Sushi]

Dont know, nurse was suppose to put in mail to me this past Tuesday. I called today and she may have forgot so putting in mail again. Wondering if I should just drive there tomorrow if feel up to it and get copy. So I cant comment on bands yet. Nurse/doctor said it was negative.

Maybe she could fax it or scan it and email and you would get it faster and save the drive?

Best,
Sushi

 

[roxie60]

doctor doesnt allow email (might be a hospital rule, dont know). I will see how I am tomorrow and may goto the office cause at this point I still may not get it until Saturday if she put it in the mail plus no delivery Monday. And I dont have FAX setup.

 

[taniaaust1]

I went throu one of the better lyme testing places (no way would I get the standard test so I paid for a better one which does find a lot of lyme in Australia where ther is supposed to be none) but had a negative result (the lyme dr still thou thought I have lyme but I wont treat lyme without some kind of positive result)