Assistance with Igenex testing 2017

I have been reading Lyme material for months. I been suspecting Lyme since last year however my Western Blot came out negative even though it said I was positive for strain 23. Then I had a major fever on 2/22 and on 3/7 I had Bell’s palsy. They did a second Western Blot and I came out positive for strain 23 and 41.
I have found LD Specialist and she wants me to do the igenex tests. I know they are expensive but I want to be smart so, she believes I might have Babesia and would like me to get the babesia microti and babesia duncani test. Also the bartonella henselae and bartonella Quintana.
My infections disease Specialist, tested me for bartonella and it was definitely negative. However the babesia is suspicious meaning my MD says is negative but the test itself says “After repeat anyalysis, non-amplification of the internal control suggests the presence of PCR inhibitors in the patient’s sample. An additional sample would be submitted for testing if clinically warranted”. My MD said some skin cells got in the sample somehow.
I call the lab (Quest) and they would not give me information and would not do a retest.
So I want to do the igenex and invest in my health but I have to be smart because I can’t do too much at once financially.
So my confusion is that I ordered the kit (I’ve call igenex many times and I have not been able to get through so I just ordered this through the website). With the kit they sent me the newest price list as of 12/20/2016 and the prices are crazy and confusing. They have panels and they have individual tests. I would like the most comprehensive tests but they might not have what I want (both babesia microti and duncani or bartonella henselae and Quintana). So, should I just to the individual tests. Cause I don’t want to go back do individual test if the “comprehensive” is not detailed enough.
Please help!

Bell's Girl, you will need to go with your gut feeling on this. I can tell you what I would do, but you have to decide what is best for you. I am sure you will hear many different opinions.

If you read the New To Lyme thread at the top of the page, you will go down many posts and see that band 23 is lyme specific. Nothing else can make that band appear. Only lyme.

As for the infectious disease doc wanting testing for co-infections, please ask him what is the reliability of the test and what will he do if you are found positive. What is his treatment for each one he is searching for? I don't have much faith in infectious disease doctors or neurologists. I had bad experiences with them and lyme. So ask tons of questions if you go that route because maybe my docs were just crappy.

My opinion is to start detoxing, eating a good healthy as organic diet as you can afford and take some good supplements for overall health. Then it is time to start treatment.

You have many options for treatment. Each and everyone of us here have done something different than the other because all of our bodies and symptoms are different.

Anyway, this is my opinion and I am sure you will get differing opinions.

Hang in there and keep asking questions. We all had to ask questions when we first got lyme. None of us knew about lyme much at all until we got here.

Welcome Bell's Girl,

Igenix is one of the better labs for testing.

Please remember that Lyme is a clinical diagnosis. You can have all negative testing results for Lyme and coinfections, and still have one or more of these diseases.

You could also ask your doctor to treat you on symptoms since you've already had testing and have a fairly good idea of where you stand. Do the testing you can afford now , you can always do additional tests later.

That is a lot of money and if you can afford that, and it will ease your mind, I say go for it.

But, remember that regular old lyme symptoms overlap with a lot of the co-infection symptoms. So when you just treat lyme only a lot of your co-infection symptoms may be cured.

We have a moderator, CD, that got Bell's palsy with her lyme.

If you get a positive for all of those co-infections, what will be the treatment? Will the treatment be the same as if you just had lyme? Make sure you ask these questions.

Oh and again, I question the reliability of the co-infection tests. Research that. I have not found those tests to be reliable.

And on the bottom of the western blot test for lyme Igenex has this blurb:

Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history.


See they do not guarantee 100% on their test either.

I feel your pain BG (sorry for the pun). I have a limited income and my health insurance company must thing Lyme Disease doesn't exist because they won't cover anything connected with it, excepting meds.
I took the financial hit and got all the igenex tests I could afford because I reasoned that I couldn't get better until I found out just what I had. My Lyme Dr. says that lab gives the best and most reliable results.

I hope that helps and I hope you feel better soon.

The thing is that these tests just are not sensitive enough, so many of us will not test for everything we suspect (lots of LLMD's will do clinical diagnoses!), and to save the money for treatments.

The tests rely on either immune response or detecting the bacteria directly. The main reason they are not sensitive enough has to do with us having Lyme, which lowers our immune response, so not enough antibodies are being produced to get a fully positive test for many of these infections, not just Lyme.

As for the direct measuring of the bacteria (PCR), it only takes a very small amount of bacteria to cause a serious infection, so if the blood drawn doesn't happen to have the bacteria in it, you will have a negative test, even though you still have the infection.

As for your diet, this is one resource that may be of help:
www.glutenfreeandmore.com/

I don't follow a gluten free diet specifically because a soy allergy keeps me in line pretty much - but there are plenty of others that will be along to help point you in the right direction. If not, please do start another thread - plus, don't forget to use the search function here to find more ideas of gluten free diets!

Thank you so much all.
As I read your posts, I noted that my Lyme specialists did not list the PCR in my labs. That makes my decision so much better.
I think I will do the co-infections just because she diagnosed it at our first meeting and I kind of need concrete evidence.
Best of luck to you all with your journey! I am about to start mine. I'll see you around in other posts ;)
Bell's Girl

"I think I will do the co-infections just because she diagnosed it at our first meeting and I kind of need concrete evidence. "

Please do realize that co-infection testing is less reliable than testing for Lyme - mostly because Lyme bacteria lower the immune function, so less antibodies can be produced.