HealingWell
Search Close Search
☰

My IGeneX test is back - Equivocal.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/30/2017 1:09 AM (GMT 0)
So what does that mean? I haven't talked to the doctor about it. They just faxed me the results.

IGM
Band 41 +
Band 45 +
Band 58 +
All others negative

IGG
Band 41 ++
Band 58 ++
All others negative

My symptoms:
(I have all of these symptoms daily, except the headache, which is more like twice a week.)

Aching joints and muscles (migrating)
Chronic headaches
Neck pain
Tingling and numbness in arms and feet
Constant muscle twitching
Tremor
Palpitations
Tinnitus
Gastrointestinal issues
Fatigue
Muscle weakness
Chest pain
Blurry vision


My symptoms are so much like Lyme that if I don't have it, I must have its evil twin. Wish I just knew one way or the other so I could start treatment. This is so frustrating. 3 years of this, endless doctors and tests and still don't know what's wrong with me. sad

Any insight into these results would be appreciated.

Post Edited (Manzanita2) : 6/29/2017 10:43:55 PM (GMT-6)

Posted 6/30/2017 1:44 AM (GMT 0)
Manzanita2 - Band 41 is the flagella (tail) of the bacteria - not lyme specific (cross reacts with dental spirochetes and Syphillis ...and a few others) but many (most?) of us test positive for it.

Band 58 - may be a European strain of Lyme.

Remember: Lyme disease should be a clinical diagnosis... so I encourage you to seek out a LLMD if you haven't already done so.
Posted 6/30/2017 2:39 AM (GMT 0)
Thanks, Girlie.

So Band 41 might or might not be Lyme? Is that why it's equivocal instead of negative?

I haven't spent much time in Europe. Are there European strains in the US?

Yes, I'm seeing an LLMD. I got her name from a list of LLMDs I requested from ILADS. I've only seen her assistant so far though. I'll see her in a few weeks so she'll go over all of this with me.
Posted 6/30/2017 3:00 AM (GMT 0)
I am in California and I got a positive 41 and 58 and have not been to Europe. Mine was IgG also.

I had lyme.

Look at the bottom of your test and you will see this blurb:

Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjunction with clinical symptoms and patient history.
Posted 6/30/2017 4:17 AM (GMT 0)
Hi PeteZa. I'm in California too.

Yes, it's my understanding that they don't base diagnosis on the tests but a positive test would have put the question to rest. I guess I just have to be patient (not easy for me, smile) until my next visit to the LLMD, which is in about three weeks. Most of my other tests should be back by then too. (Bartonella, Babesia, CD57, Nutri-Eval, and a few other things.)

They've already told me I have high titers for EBV, mycoplasma pneumonia, cytomegalovirus, Herpes 6 and a MARCoNs sinus infection. But I hear many people have some of these so I'm not convinced they're the sole cause of my symptoms.

Post Edited (Manzanita2) : 6/29/2017 10:42:28 PM (GMT-6)

Posted 6/30/2017 5:26 AM (GMT 0)

Manzanita2 said...
Thanks, Girlie.

So Band 41 might or might not be Lyme?

I cant answer for Girlie, but I think this should be an easy one to answer. Do you have syphillis? No. Ok, do you have an oral infection? Probably not. Then it must be Lyme. At least thats how I looked at myself when my IGeneX came back with band 41 only. It has to be Lyme or theres some other mystery bacterium thats yet to be discovered.
Posted 6/30/2017 6:57 AM (GMT 0)

trader758 said...

Manzanita2 said...
Thanks, Girlie.

So Band 41 might or might not be Lyme?

I cant answer for Girlie, but I think this should be an easy one to answer. Do you have syphillis? No. Ok, do you have an oral infection? Probably not. Then it must be Lyme. At least thats how I looked at myself when my IGeneX came back with band 41 only. It has to be Lyme or theres some other mystery bacterium thats yet to be discovered.

I agree, Trader. And the symptoms line up with LD
Posted 6/30/2017 8:23 AM (GMT 0)
Be your own advocate here.

What ever the doctor says, keep researching and go with the answers you are comfortable with.

We will help you along the way.
Posted 6/30/2017 2:05 PM (GMT 0)
Thanks all for your input.

No, I'm pretty sure I don't have, nor have ever had syphillis. I don't have any dental infections that I know of and I've just been in for my checkup and cleaning and got a clean bill of health there.

I know it seems like I want to have Lyme. I don't. It sounds like a horribly hard infection to deal with. (My heart goes out to all of you!) But I definitely have something that's no fun either. I just want to know what it is and start treatment for it. It's been a long three years.
Posted 6/30/2017 2:14 PM (GMT 0)
We've all been in your shoes at one point in time. No one wants it. We want answers. But when everything is pointing to Lyme and/or co infections, it most likely is. Whether any doc agrees with you or not, its best to start treating in one form or another. If you respond to treatment, well then you know. If not, its still possible youre on the right track with a treatment plan that isnt hitting what it needs. Youre on a search and destroy mission, sometimes you get it right, other times not so much. One things for certain, waiting for a test to tell you HEY ITS LYME isnt going to happen. Tests suck unfortunately. You have enough info to get the ball rolling. Good luck whichever way you decide to attack it, or not.
Posted 6/30/2017 2:28 PM (GMT 0)
Agreeing with the others - and especially with Trader.

Band 41 is the tail of the bacteria as the others have said - and only a select few bacteria have that tail.

Band 45 may indicate Ehrlichia

Band 58 (as Girlie said) may indicate a European strain (Borrelia afzelii) of Lyme.

As the others have said, don't wait any longer - get into treatment yourself if you have to. There are herbs you can start on until you find a LLMD that will recognize that you have Lyme, and possible co-infections.
Posted 6/30/2017 4:13 PM (GMT 0)
Manzanita, it's probably lyme.

The good news is your LLMD will finally give you a DX and you can start treatment! many of us here had similar experiences. I probably had lyme for well over a decade and finally DX'd myself even after 2 doctors said I didn't have lyme (due to false negative Elysa tests)..

I actually felt good and very happy when I finally got DX'd. years of searching for a reason was not fun.

you may face a long battle against Lyme and it's friends, but don't feel discouraged. you also have us here to help along the way smile

Caramba!
Posted 6/30/2017 4:32 PM (GMT 0)
I actually did start on some herbs a few weeks ago. It's a powder called Samsara Lyme with the Buhner herbs, Cat Claw, etc. I've had to stop all supplements though for two weeks for the Nutri Eval and a test called GI Effects. When I was on the herbs I felt horrible around the third day and am guessing it was a herx. I stopped and started them a few times because of that with the same thing happening: increased symptoms several days after starting.

1000Daisies, I would like to get my daughter tested too. She had a tick bite on the same hike that I got my bite although she has nowhere near the symptoms I do. What symptoms she has might just be typical teenager stuff but I worry. She has bouts of depression and anxiety attacks, says she sometimes aches and "hears her heart beating" at night. She also has tinnitus (tho she does listen to loud music a lot). I may look into some of the testing options you mentioned. Thanks!!
Posted 6/30/2017 4:35 PM (GMT 0)
That does sound like herxing. Are you detoxing? If so, what all are you doing for detox, we may have some suggestions that could be of help!

Hearing your heart beating at night may or may not be a symptom of these infections - but if it makes her feel like her bed is shaking, that's typical of Lyme.

The tinnitus is not a typical issue for a teen to have though - that could be Lyme or Bartonella.

And , while teens can and do experience some anxiety and depression, if it's sustained, I would consider it a possible symptom of these infections.
Posted 6/30/2017 5:24 PM (GMT 0)
Traveler, yes I was detoxing with everything I could think of (much that I read here, thanks!) I drank lots of lemon water, took milk thistle, NAC, epsom salt baths, AlkaSeltzer Gold, etc. I think when I start back on the herbs I'll stay at a lower dose for awhile until I see what the LLMD says.

I will get my daughter tested too. I sure don't want her to start having all of these symptoms.
Posted 6/30/2017 8:59 PM (GMT 0)
Caramba, I pretty much diagnosed myself too. (We'll see if LLMD agrees.) I probably would have figured it out a lot sooner if I had known more about the tests being inaccurate. My Elisa was negative three years ago. I kept getting diagnosed with weird stuff like GERD, gastritis, arthritis, fibromyalgia, anxiety and so on. I would think "Ok, that explains some of my symptoms but what about the rest?" When I finally read detailed symptoms of late stage Lyme I nearly fell out of my chair! All of my symptoms right there listed. All of them can be attributed to Lyme disease. Sigh.

I'm so sorry to hear you had to go a whole decade for a diagnosis. Hope you're better or improving now.
✚ New Topic ✚ Reply