Confusing test results

Hi there,
This is my first time posting, but I've been reading threads here for about a month. So many wonderful people here! Thanks in advance, for any help given.
I received my results from Igenix today, and sadly I'm more confused than ever! My IgG results are negative. My serum levels are 40( Equivocal). My IgM results are indeterminate. Here's what they say:
30+31+ 39indetermimate 41+++ and 83-93 are indeterminate.
So....Igenix recommends test 488 for confirmation.
I haven't talked to my dr., but she emailed me saying that she recommends getting tested again in 4-6 weeks.
This would make sense to me, if I thought I'd recently contracted Lyme, but if I do have it, I've had it for 30 plus years, because this is when my symptoms began. Yet the only positive on my IgG test is band 41.
I read that when you've had an infection for a really long time, your body may stop producing certain antibodies.??
Anyway, not sure if I want to spend more money on another test right now, so any insight would be greatly appreciated!

Welcome to the forum. I'm so sorry that you are here, but I'm glad you found us. We ask new members to read our first thread New To Lyme?... Start Here! It is full of great information, symptom lists, helpful links, etc. You will find a list of possible detoxing methods here: www.tiredoflyme.com/detox-methods.html

So if I'm understanding correctly, the 30, 31, and 39 were IND and the only positive band was 41. From the way you wrote it above, it looks like you were stating, 30 and 31 as positives +. Most people on this forum would say you have Lyme based on your results. And yes, that is what the literature says, the longer your body has been immune compromised, it may not be able to produce a response, thus no antibodies detected. This is not true of all persons. Our immune systems are sooooooo different.

It's unfortunate that testing isn't more accurate. It can actually be rather confusing. Some people would say, save the money and start treating, others really want to see positive as a result. With so many IND's, and symptoms, I would start treatment and then assess how you feel.

What are your symptoms?

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Lyme Moderator

Quest/labcorp test =negative (reactivated viruses and myco p, Igenex test=negative, Krimpet symptom test=highly probable

December words of encouragement: "Put yourself in a state of mind where you say to yourself, ‘Here is an opportunity for me to celebrate like never before, my own power, my own ability to get myself to do whatever is necessary’.” ~ Dr. Martin Luther King

Welcome to the community Lolap.

Here is a list of what all of the bands translate into from this source.

/sites.google.com/site/newjerseylyme/lab-tests/tests-explained
"9 cross-reactive for Borrellia

12 specific for Bb (Lyme)

18 flagellin fragment (Lyme)

20 may be cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb. Can be an early band.

28 OspD. Specific for Bb (Lyme).

[23-28] Potential for Central Nervous System (CNS) involvement.

30 OspA- substrate binding protein- common in European and
one California strain. Check for mycoplasma.

31 OspA, specific for Bb (Lyme).

34 outer surface protein B (OspB); specific for Bb (Lyme).

35 specific for Bb

37 FlaA gene product- specific for Bb (Lyme).

38 cross-reactive for Bb

39 BmpA- a major protein of Bb flagellin; specific for Bb- Sometimes found in those with joint involvement. It is the most specific antibody for borreliosis of all bands.

41 flagellin protein of all spirochetes. This is usually the first to appear after a Bb infection and is specific for all Borrellia. Can be positive due to relapsing fever, oral spirochetes and syphilis. Flagella or tail protein. Flagella is used to move Borrelia burgdorferi from point to point. Many bacteria have flagella. This is the most common borreliosis antibody.

45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis). Heat shock protein. This helps the bacteria survive fever. The only bacteria that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein- Check for viral infections

60 cross reactive for all Borrellia

66 Oms66- cross-reactive for all Borrelia, common in all bacteria- Check for E-coli

83 high molecular mass protein. Specific antigen for the Lyme bacterium. This is the DNA or genetic material of Borrelia burgdorferi. It is the same as 93, based on medical literature. Laboratories vary in assigning significance to the 83 versus the 93 band.

93 an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Possibly the same protein as in band 83, just migrates differently in some patients.

NOTES:

When reporting bands, the reporting laboratory marks bands with the following indicators of intensity:

- Not present
+ Low
++ Medium
+++ High
+/- Equivocal = indeterminate (present, but not as intense as the "Low" reading)

Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.

Some patients might have an IgM response at the time of the EM rash. The IgG response tends to start several weeks after infection and peak months to years later. In some patients, the IgM response can remain elevated- in others it might decline, regardless of whether or not treatment is successful.

Many Lyme disease experts believe it is a mistake to exclude 31 and 34 kDa antibody proteins from the list of significant bands.

Lyme disease patients may not test positive for exposure to B. burgdorferi because their antibodies to the organism are bound up in immune complexes.

An indeterminate number of patients with late or chronic Lyme disease are simply seronegative for unknown reasons."

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Lyme Forum Moderator: IGEN-X IGM ++ band 41, ind band 31 IGg, ind band 41. Clinical diagnosis of lyme by CMD and Naturopath. Used Herbal protocol: Buhner, Chinese herbs, Zhang herbs, support from this community. Symptoms 90% reduced with flare-ups. Targeted in this order: lyme, bart, babesia, cysts/bio-films, candida & fungus, back to lyme and bart

and... here is my welcome to the community! I'd highly recommend doing Horowitz's screen tool below. This convinced me.

Welcome to the community.

You are finding this place just as I discovered it in January of 2016, when I thought I was dying. My primary means of support for figuring this journey out has been here, and I am 85-90% better going a mostly all herbal route without the means to afford an LLMD.

Here is a nutshell of what I've learned and hope you find it helpful. In my view, a KEY thing is to check in with regard to what pops for you, or resonates, or peaks your interest. Make a note of it somewhere you can find easily to look into further. I am not a Dr., this is anecdotal and passing on what I have learned via experience.

COLLATED INFO
Here is a GREAT collated bit of info that was compiled by this community. You'll find it the top thread in this lyme forum.
www.healingwell.com/community/default.aspx?f=30&m=1606610

SCREENING TOOL
For me, one screening tool I found, developed by a Dr. who has treated thousands of patients, convinced me to pursue a probable lyme and co-infections scenario. My blood work was initially negative, but it turns out I had symptoms galore as well as "exposure." I'd recommend taking this test if you are question whether what brought you here is due to a tick borne infection.
www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

If you score over 45, then Dr. Horowtiz suggests discussing the results with your Doctor. Mine was something like 100. Now it is down to 38.

CLINICAL DIAGNOSIS - BLOOD WORK
For blood work, it isn't reliable, lyme is a clinical diagnosis based on exposure and symptoms. Blood work is used to support the diagnosis. Not all blood work is the same. If you DO do blood work - using a lyme lab is recommended - IGEN-X is often recommended. It requires a Dr.'s signature. If you DON'T have a Dr. who will sign a form for IGEN-X, there is a firm you can order through that I used, best investment I made! I used True Health Labs. It is around $350. I ordered the Basic Lyme Panel.

LYME LITERATE DR. - LLMD
If you are on a tight budget, and can't afford a lyme literate Dr. (initial consults start at $600 on up into the thousands with not all covered by insurance) it is possible to figure it out with an herbal approach, if your body responds well. You can hire a consult with a professional herbalist for $200, in my experience. So, this route is the cheapest route to take.

TAKE RIGHT ACTION
As soon as you suspect it, I'd take right action! It can take a coons egg to get diagnosed and finding a lyme literate Dr. also takes time. There are simple steps you can begin NOW. My path, I started with nutrition, then herbs, then paid out of pocket for consults and blood work to confirm my suspicions. Here are three simple steps you can take now.

ONE: nutrition - NO SUGAR, NO ALCOHOL, NO processed foods, many benefit also from no caffeine, no dairy, no gluten. If it is a bacterial infection you want to create an environment they don't like. I began with a loose paleo diet, then began to do an anti-inflammatory diet, and then, tried GAPS for a bit. Here is a link about the Wahl's Paleo realfoodrebel.com/wahls-paleo-diet-for-lyme-disease/. Choose what works for you! I also benefited from Dr. Weil's anti-inflammatory nutrition pyramid. www.drweil.com/diet-nutrition/anti-inflammatory-diet-pyramid/

TWO: consider herbs to start with is what someone advised me - Stephen Buhner, love his approach. An infamous moderator Traveler uses chronic tonic. I liked Buhner because it was the least costly and I could begin simple and work my way into the complexity. The herbs to start with I used were Cats Claw (which I got at a health food store) and I ordered Japanese Knotweed from Buhner's suggested source.
greendragonbotanicals.com/products/medicines/japanese-knotweed.html

Free Buhner info here: I eventually bought his books.
Website with info:
buhnerhealinglyme.com/the-protocols/
Some great collated notes:
www.betterhealthguy.com/images/stories/PDF/BUHNER%20CONF%20NOTES.pdf

THREE: If it is lyme and co-infections, detoxing will become a familiar term as will "herx" reactions.
Favorite Detox link
www.tiredoflyme.com/detox-methods.html
Description of a "herx"
/chronicillnessrecovery.org/index.php?option=com_content&view=article&id=161

My favorite detox methods.
Sauna at the gym (I was too sick to go the gym at first)
Lemon in my water
1 tablespoon of Bragg's Apple Cider Vinegar in my Water
Charcoal tabs taken 2 hours before I eat something, and don't eat for 2 hours after
dry brushing
Epsom salt bath: 1 cup epsom salt, 1 cup of sea salt, 1 cup of aloe vera juice, 1 cup of baking soda
You can do foot soaks as well! and use just straight epsom salts
Massage (can't afford it often)

IDD: Infections Disease Dr.'s
Don't waste your time with an infectious disease Dr., in my view. They stand on the side of uninformed and mis-information when it comes to this concept of "lyme wars." Others warned me about this but I had to experience it before I understood. It was a horrible experience. It has to do with the "lyme wars" This link explains it well.
www.chelseagreen.com/blogs/welcome-lyme-wars/

BOOK
Books I would recommend - you may be able to get it at your library
Stephen Buhner's - Healing Lyme [urlhttp://www.gaianstudies.org/Bookstore.html
Richard Horowtiz - has a new book coming out - How Can I Get Better http://www.cangetbetter.com
I bought the first addition - got a lot out of it. Why Can't I Get Better?

FREE instant info I found useful about treating lyme.
www.lymenet.org/BurrGuide200810.pdf

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Lyme Forum Moderator: IGEN-X IGM ++ band 41, ind band 31 IGg, ind band 41. Clinical diagnosis of lyme by CMD and Naturopath. Used Herbal protocol: Buhner, Chinese herbs, Zhang herbs, support from this community. Symptoms 90% reduced with flare-ups. Targeted in this order: lyme, bart, babesia, cysts/bio-films, candida & fungus, back to lyme and bart

Don't worry about the IgM vs IgG.

In Lyme, often the IgM doesn't seroconvert to IgG until years later.

We can be IgM positive even with chronic lyme.

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Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14; added biaxin Sept. 26/14 Disc. amox,added Ceftin Nov. 20th.; Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin); Abx/herb break Apr-July/15; July-mino; Aug. added Rif; Nov. switched mino to

Hi Lolap,
Welcome to our community officially!! I'm so glad you found us.

You have Lyme.

Here is the site that I use to help interpret them:www.oocities.org/hotsprings/oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

Your Lyme specific bands are (and remember, it doesn't take a fully positive band to be reactive, showing that you have those antibodies being produced): 31, 39 and 83 - 93.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

I only tested positive for band 41 until I had a full year of abx treatments. This is not all that unusual, as these tests are based on the ability of the body to produce antibodies. The problem with this is that it's a well known fact that Lyme lowers the immune function, making it less likely to be able to produce said antibodies. Chronic Lyme patients are in a catch 22 with testing - we often can't test positive, so it can be harder to get appropriate treatments. This is why we see LLMD's - they understand this and diagnose clinically if need be, which is actually what the CDC says.

"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods."
/www.cdc.gov/lyme/ - of course, that's about all they get right though.

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Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)