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Is getting labs via Igenex necessary?

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Posted 2/2/2015 5:58 AM (GMT 0)
I had my first follow up with my LLMD on Friday. All went well considering. We changed some supplements and herbs around, antibiotics stayed the same (Biaxin 500mg daily, twice a day, Ceftin 500mg daily, twice a day and Tinidazole 500mg pulse two consecutive days a week, twice a day) and we discussed lab tests that were done at my previous appointment on 12/31. All of my Lyme and confections came back negative this time. The only thing that was abnormal was my CD57 count. Mine is 12 and the normal range is 60-360. Those labs were via LabCorp. Main concerns at the appointment were about keeping my immune system supported and functioning, my weight loss of 12 pounds in 4 weeks being worrisome, and how to manage my worse symptoms a little better. I never thought how important my daily symptom log would be... you can really see a pattern when you look at the big picture!

Anyway, My LLMD said that she doesn't think the Igenex labs are necessary for treatment to continue. I've had positive band 23, and Lyme & co symptoms for 4 years. She said she feels perfectly comfortable moving forward without it, but would have no problem ordering it for me if I wanted it. It's $260 (I think that's what she said), and being out of work and paying out of pocket for treatment, I'm trying to save every penny I can. I'm getting married in August... this was the worst time to start treatment, but it is what it is!

So, my question to you lovely people, would you spend the money and get the Igenex labs drawn, or just move forward as I already am? I'm a Registered Nurse, so for me I like to see tangible evidence, but when it come to Lyme I know sometimes that is hard to come by. I am also worried about insurance denying treatment coverage if there is not a recent positive test result. has anybody had any trouble with that issue?

Hope the weekend treated you well. Sending good, healing lyme vibes to everyone!
Posted 2/2/2015 11:27 AM (GMT 0)
Save your money! Most people get the Igenex testing because they have come up negative on the standard tests and are being refused treatment. You are already getting treatment so it really isn't necessary.

If you find your treatment isn't progressing well over time you might want to have co-infection testing done through Igenex. But even that needs to be taken with a grain of salt. For example, I was negative for co-infections with the standard lab tests, but turned up positive for Ehrlichia through Igenex but my main problem, Babesia, never came up on any tests.

The insurance issue is totally different, however. You almost don't want to call them for fear of having them "notice" you! If they are paying so far, you should be all right. You could get the Igenex testing later if they deny your claims.

It's great that you have such an informed and capable LLMD!
Posted 2/2/2015 4:54 PM (GMT 0)
No, IMO

It can be negative because you might have 1 of the 300 strands Igenix doesn't test.

It can be positive because you recently had a cold.

How can you trust it? Go by your symptoms and listen to your body.
Posted 2/2/2015 4:58 PM (GMT 0)
itsnotjustlyme.com

Question: Are you actually saying that a Lyme Disease test can show POSITIVE (positive, Lyme-specific bands) because of a common cold? I have to say, that sounds odd, and not correct.

Anyone else on this comment?
Posted 2/3/2015 5:18 AM (GMT 0)
Thanks every body! This makes me feel much better about not getting it done. I trust my LLMD completely and she is treating me for Lyme & co based mainly on symptoms and that first positive 23 band. Just wanted to get some opinions and see what every body else thought and have/have not done!
Insurance is covering everything so far, so I'm going to lay low until they aren't I'm an Oncology RN so I have a first hand look at how these insurance companies behave. It would shock you!
Posted 2/3/2015 5:32 AM (GMT 0)
Like you I had WB band 23+, cd57 15, c4a 77,000. My LLND started treating me based on symptoms and these numbers. Ins has never questioned it (yet). I'd save your $200 and put it towards your wedding!
Posted 2/3/2015 6:55 PM (GMT 0)
^ LymeDisease1, that's the way our doctors often do it. Please stop spreading misinformation.
Posted 2/3/2015 7:44 PM (GMT 0)
I don't think the testing is necessary - but I really wanted to have a test...and I was Igenex positive. I think it was a gamble, though, because if it had been negative...I would have been questioning it (I still do now and then) - which wouldn't be a good thing.

Ultimately it's up to you - whether you want to try for a positive test. But, what will you do if it's negative? Will that play on your mind during your treatment?
Posted 2/3/2015 10:15 PM (GMT 0)

lymedisease1 said...
I wouldnt want any doctors treat an infectious disease, just based on symptoms.

I too have to disagree with this - I was on very strong abx for a full 12 months before I had a positive Western Blot - good thing most really good LLMD's are willing to diagnose clinically.

And many doctors diagnose clinically (by symptoms only). Ever gone to a doc and they said, well it looks like tonsillitis (or whatever)? They write out a 'script and off you go - without any blood tests being done? It actually happens all the time.
Posted 2/4/2015 3:21 AM (GMT 0)
Good point Girlie. I definitely think it would mess with my mind a little, and I need it to stay as positive and worry free as possible!

Lymedisease1 - I have no doubt that I have Lyme & Co. I've had a positive test in the past. I was just wondering what everybody thought about Igenex testing because of the cost. I am paying so much for treatment, health insurance and other every day bills, while also planning a wedding and honeymoon for August and not working at the moment. So, to say the least, money is tight. I didn't want to spend the extra money right now if I don't need to. I will definitely get the test in the future.

Also, Sarahm and Traveler... I'm definitely on your side. I know doctors treat based on symptoms all the time (i'm an oncology RN), they do even more so when it comes to Lyme. With our immune systems not functioning properly, it makes complete sense why the western blot can come back negative at times throughout treatment. Thanks for sticking up for us! :)
Posted 2/4/2015 3:30 AM (GMT 0)
kk:

I would not spend the money if I could get treated without having to spend it for igenex. Some people test negative even with igenex for lyme and or/co-infections. Then what? A positive test will not cure you. You need the treatment. So if I were you, I would invest my money in the treatment, not the tests, unless you THINK you have a co-infection and your dr. does not treat you without a + test.
Posted 2/4/2015 5:08 PM (GMT 0)
Simela1- Sounds like a plan to me. Luckily my dr will treat me for Lyme and the co-infections she thinks I have based on symptoms, so move forward with treatment we will.
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