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Which Tests Should I Ask For?

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Posted 6/22/2015 1:42 AM (GMT 0)
I am seeing a new doctor tomorrow and have been told good things about her. I am going to ask for testing for Lyme disease and bring up other concerns as well (possibly adrenal fatigue, hiatal hernia, food intolerances) From what I've read, Igenex is the best. Is that correct? What tests should I verify that I am getting so I don't waste time and money? Thank you for the help!!
Posted 6/22/2015 3:54 AM (GMT 0)
Sorry, I am really tired, but

Salivary adrenals,
thyroid,
kidney, and liver, i.e. full panel
Potassium, magnesium, calcium, B12
C3, c4, etc.

You might check for co infections, depending on your symptoms.

The most common are Babesia, Bartonella, Erlichia, and Mycoplasma Pneumoniae.

Igenex is one of the best.

Margaret
Posted 6/22/2015 4:00 AM (GMT 0)
The Igenex Western Blot IgM and IgG are the ones you should start with. They cost $210 for both plus the Fedex fee.


It depends on how much you want to spend. If you're willing to pay for more, you could get the full panel for lyme (I can't remember - I think it is $600.00)

The co-infections (bart and babesia) are even more unreliable than the lyme tests.
Posted 6/22/2015 5:10 AM (GMT 0)
The Igenix test is now $275
The complete coinfection panel is $695.
Posted 6/22/2015 5:29 AM (GMT 0)
Cardinal - so the WB IgM and IgG is now $275 for both? They were $105 each - so now they're $137.50 each?
That must be recent - as we paid $210 in March.

Do you know what the full Lyme panel costs now?
Posted 6/22/2015 4:13 PM (GMT 0)
So if I have Lyme, there is a good chance that the WB IgM and IgG will find it then.? Do I need the full panel to detect Lyme or does the full panel just include co-infections? Just trying to clarify.
Posted 6/22/2015 5:37 PM (GMT 0)
There is a full lyme panel, and then there are other tests for co-infections.

I only did the WB IgM and IgG. That is the "best bang for you buck". If money is tight, I would do that one.
That may be all you need. Your LLMD may want additional testing, though.
You're seeing him today, right? He may want certain tests done.
Posted 6/22/2015 5:55 PM (GMT 0)
I would highly recommend the IGENEX Western Blot. You can always test for co-infections later.

See what other tests your doctor recommends for non-Lyme issues. Make sure you give a complete list of symptoms so that he/she orders all the appropriate tests.

It's a bummer that they raised the price! I might test for Babesia. It is likely that they raised the price of all the tests. :((
Posted 6/23/2015 1:36 AM (GMT 0)
Well I seen my new doctor today. She is not listed as an LLMD. Was there for 5 hours! I showed her my symptoms list and the first thing she said after reading it was " I am pretty sure that you have Lyme Disease or MS". Drew blood and is using the Western Blot to test for Lyme antibodies. It is going to a lab in Washington state-cannot remember the name. If his comes back negative, I will find an LLMD and test through Igenix. It is looking like I probably have Lyme. She is also sending me for brain and spinal MRI and also a barium swallow for stomach issues I've been having. Also she said she can hear a strong mitral valve murmur. I've been having PVCs for 7 years now. I am hoping to have a definitive answer for my symptoms so I can start treatment. Keep me in your thoughts and prayers!
Posted 6/23/2015 1:46 AM (GMT 0)
Well, it's good that she is testing you, even if she's not LL.

I know you started a thread to look for an ILADS trained LLMD - did you have any luck finding one?

It takes several weeks, to months to get an appointment with a LLMD, so you will want to look into that.
You will want to bring your test results to that appointment.
Posted 6/23/2015 2:24 AM (GMT 0)
Yes. I found one about 4 hours from me. I'll look into making an appt if things don't pan out with my current dr.
Posted 6/23/2015 3:20 AM (GMT 0)
Margaret,

I have my yearly exam with my primary on the 1st and blood work on Friday. I was going to call an make sure to add some things.

We always do B12 and D because I am chronically short on both, but I seem to keep up with supplements.

Potassium is another because with BP meds Potassium is an issue.

I thought serum Calcium was never very accurate? You mentioned magnesium, so is serum magnesium accurate enough? Will Magnesium be affected by Epsom salt foot baths? I guess I'm asking won't it go up and down depending on what you did for foot baths the day before?

You suggested a Kidney panel and a Liver panel, do you know what these test for an what they tell you? I'm curious because I have lots of kidney stones and recall that one time someone mentioned an enlarged liver just from a exam.

C3, C4? Are there multiple versions of C?

Anyone have any ideas where to read up on this stuff?

I find the question about PVCs interesting because years ago my primary saw them but the Cardiologist wasn't worried. Of course, that was years ago. I'm way overdue for a visit to the cardiologist. Last time I talked to her I was with my Mom (who's hard of hearing), and she reminded my I'm over due. Caro problems run in my Dad's side of the family. I've ignored it for a while. Chronic pain tends to get so absorbing you let everything go.

I am awaiting the results from Igenex. I had the full Lyme panel and the Babesia/Bartonella panel. I know they are not as accurate but given my symptoms, I figured I would try it. If either comes up positive and Lyme is borderline, I figure that makes the argument for Lyme better.

So what do all of you think are good tests for a primary to run at the yearly, at least as preliminary tests?

Sorry, don't mean to take over the thread and can start another if you guys think that would be better.

Thanks, Kim
Posted 6/23/2015 5:19 AM (GMT 0)
Will do SickGirl.

You can also search for Lyme Literate doctors up to 3 times a month on the Lyme Disease Association's web site.

http://module.lymediseaseassociation.org/referral/LogIn.php?setcookie=yes

Or you can request a referral from ILADS. You want a doctor who is ILADS trained.

http://ilads.org/ilads_media/physician-referral/

Please keep us posted. :)
Posted 6/23/2015 5:30 AM (GMT 0)
Kim~
You probably should put your questions in a separate post for Teragram. She might not see it otherwise.

A lot of us Lymies have regular liver and kidney tests since we are on lots of meds that can affect their function. Dr. H says different co-infections can affect organ function too. It might give you a clue as to which co-infections you might have. Maybe not. My blood work is essentially normal. Thank goodness.
Posted 7/24/2015 9:11 PM (GMT 0)
My Lyme western blot came back negative. Turns out I have an H. Pylori infection, intestinal parasites (worms and flukes) , and beginning stages of rhuematoid arthritis. She thinks the inflammation could be caused by the parasites. And says the parasites could be causing all my symptoms. I would have never thought. I thought k was dying. Started Flagyl, doing some enemas, and am feeling better already.
Posted 7/24/2015 9:50 PM (GMT 0)
That's great that you're already feeling better, sickgirl!

What prompted the Igenex test - symptoms alone...or did you have a tick bite/rash?

Can all symptoms you have be explained by H. Pylori and intestinal parasites?

Did you have any positive bands on the WB test?
Posted 7/24/2015 9:59 PM (GMT 0)
sickgirl—

There are numerous reasons why your negative test results could be inaccurate, or "falsely negative". First, IGeneX offers the most sensitive test (it's possible she didn't test w/ a WB and tested with an ELISA first, which is notoriously inaccurate for Bb infection.

Also, the lab is as important and using the IGeneX test as the labs in Palo Alto (CA) or Stonybrook (in NY) are the only ones in the country that test for more strains. So the other labs often miss because they aren't testing broadly enough.

So, if you are having "lyme like" symptoms, please have the IGeneX done, as well.

I'm sorry about the H. Pylori and the parasites! No fun… however, it's common with lyme to have many, many other issues because of how the lyme attacks the immune system, which allows it to succumb to other invaders. So, your diagnosis still doesn't rule out lyme. RA sx can often be misinterpreted, when they are actually caused by the lyme… Many of us here have problems with our joints and significant inflammation.

However, even if you do have lyme, it is a very good idea to get the parasites and H. pylori addressed first. Once you have made some progress on that front, your sx should be much clearer to help clarify the lyme diagnosis. But even more importantly, 70% of your immune system lies within your gut, so to have the infection and the parasites burdening your gut, your immune system is overwhelmed. Once you rebuild your gut health, your immune function will follow, which will provide significant support for lyme treatment, if you find that necessary…

-p
Posted 7/24/2015 10:05 PM (GMT 0)
Also, down the road, if you do decide to take the IGeneX test (and remember to have the labs sent to either the CA or the NY lab I mention), you might consider provoking a more accurate immune response by taking Olive Leaf Extract for a good 4-5 wks before the test (to cover the lifecycle of the lyme). The WB tests are serology tests and rely on a fully-functioning immune system. Obviously, with everything going on in your gut and your infections, your immune system is struggling. So, it's logically going to have a problem producing the volume of antibodies required by these really weak tests. Even the IGeneX test can produce false results if you have a weak immune response (which most of us do, because the lyme infection attacks the immune system).

The Olive leaf is antimicrobial among other things and helps boosts your immune system. Kind of like adding more horse power to your car engine. Several of us here have had good results with that.

Olive Leaf Extract is OTC and can be found at most health foods stores or on Amazon.com. Gaia is a good brand.

-p
Posted 7/24/2015 10:09 PM (GMT 0)
So, you didn't have the Igenex WB done yet, sickgirl?

I agree with P. - you should have that one done.
Posted 7/24/2015 11:15 PM (GMT 0)
Girlie-I had many of the symptoms for Lyme Disease. Been really sick for the past few years...gradually getting worse. I didn't have a rash. A lot of neurological things, flashing lights in vision, joint pain, brain fog, extreme fatigue, heart pics, gut issues....barely able to function. I had a Western Blot but it was sent to Quest Labs in Washington state. I'm not sure if I had any positive bands. I didn't ask her. I will have to do that. My doctor did say that parasites can mimic a lot of diseases and could explain a lot of my symptoms, especially if I've had them a long time. I've been sick about 8 years.

I've heard about false negatives and I still want to do the Igenix test. My insurance covered this test through my dr so I went ahead and did it just was curious. With all the parasite in my gut, I wouldn't doubt I could still possibly have Lyme. I hope not, but it's so prevalant, it's definitely a possibility.
Posted 7/24/2015 11:19 PM (GMT 0)
Pirouette- thank you for the response and all the information! You are right. I plan on doing the Igenix test as soon as I have the money too. Thank you for the advice. I will definitely look into the Olive Leaf Extract.
Posted 7/24/2015 11:30 PM (GMT 0)
Pirouette has given you some excellent suggestions - re: treating the H. Pylori and parasites.

By the time you see a LLMD - you may have a better picture ie - what symptoms are leftover that need LD treatment.
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