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Newbie needs help w/labs and further testing.

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Lyme Disease
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Posted 7/13/2016 3:19 PM (GMT 0)
I just got the results through Quest labs and the following came back positive and still waiting on C4a:
-23 IgG band reactive
-Mycoplasma Pneumoniae AB IgG - high
-TGFB-1 - high (range of 344-2382 pg/mL / mine was 8920)

My doc said that I don't meet the CDC guidelines for a Lyme dx, but that band 23 is very Lyme specific. He said the high TGFB-1 indicates a lot of inflammation, and that the mycoplasma could be elevated from a bout of walking pneumonia within the last year (I was very sick in September, but never dx with walking pneumonia.). No other co-infections were positive. (He tested bartonella, ehrlichia, babesia, and chlamydophila.)

He said that most patients who follow-up with testing from Igenex typically have more positive bands than with Quest labs, but since they are expensive, he was ready to treat me for Lyme. Before taking antibiotics, I wanted to confirm that I really need them, so I asked for further testing. I can't decide if I should go with Igenex, or go with MDL (Medical Diagnostic Laboratories) who takes insurance. He was only going to repeat the Western Blot.

Can anyone tell me if my current results confirm Lyme or should I repeat the Western Blot with another lab? If so, would MDL be accurate enough or is it best to use Igenex? Thanks for any advice!
Posted 7/13/2016 3:31 PM (GMT 0)
Hi Luv2Travel!
Welcome to our community! I'm so glad you found us.

Quest is one of the worst for testing for these infections, but since you have a doctor that's willing to treat you on a clinical diagnosis, I'd just be careful to make sure that they are following the right guidelines so that you heal. ILADS (2014) Treatment guidelines:
www.lymenet.org/BurrGuide200810.pdf

Igenex is the lab that most people here use, although Stony Brook Labs is another one with a good reputation for doing these tests as well. I'm not sure about MDL, others may have experience with them though.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

Keep asking questions! The learning curve with Lyme can be quite steep and we can be of help with that.
Posted 7/13/2016 4:07 PM (GMT 0)
Thanks Traveler! I read through some of the "new to Lyme" and will read more later...lots of good information.
Posted 7/13/2016 4:11 PM (GMT 0)
You better act fast don't hang around figuring out what to do and why.... get on antibiotics as soon as possible and look for a LLMD.
Posted 7/13/2016 4:15 PM (GMT 0)
Yes, I would absolutely treat. Dr Horowitz's lyme bingo is always helpful: https://s-media-cache-ak0.pinimg.com/736x/b1/00/53/b100536dec4b222440f41f2b3dfc48db.jpg

If you have are positive for any of those specific bands you have been exposed to burgdorferi.

Personally I would not retest but go ahead and start treatments.
Posted 8/30/2016 1:28 AM (GMT 0)
I know this post is a little old, but I did opt to start treatment right after I had blood drawn to retest through MDL. My result was CDC negative, but labeled equivocal per MDL's guidelines. I had no igM positives, and had only IgG band 23 positive again. They measure the intensity of the bands and mark only those with an intensity > 60% of the cut-off control band as positive, and here's where mine measured:
Band 41 - 56%
Band 34 - 34%
Band 30 - 31%
Band 23 - 193%
Band 18 - 50%

Does this look like enough evidence to confirm that starting Lyme treatment was appropriate? My PCP is not the one treating my Lyme and I'm afraid she will disagree with my choice since I'm not CDC positive even though I'm symptomatic. I also had a very high level of C4a.
Posted 8/30/2016 1:51 AM (GMT 0)
Yes, it's enough evidence to confirm that treating lyme is appropriate.

Your first test was enough...and this is confirmation.

Diagnosis should be clinical - and your Dr. was right band 23 is lyme specific.


How is treatment going so far?
Posted 8/30/2016 2:20 AM (GMT 0)
Thanks, Girlie! Going ok so far. Taking minocycline 5 days, tindamax 2 days, and fluconozal 1 day, plus NAC every day to help with detox. I'm supposed to do Epsom salt soaks with lavender oil, but it's been so hot where I live I can't bring myself to hop in a hot tub. I've had some exacerbation of symptoms and a few bouts of dizziness and some periods of extreme fatigue. But, I've also had days where I have had more energy. I guess it will be a back and forth sort of thing.
Posted 8/30/2016 3:18 PM (GMT 0)
Luv2Travel skip the epsom salt baths for now. There are a many other alternatives to detoxing. The easy ones are dry brushing, many glass of water a day with a couple of them having lemon in them. Maybe one of those glasses having apple cider vinegar in it. Cruciferous vegetables daily. A little walk.

All easy to do and so very important.

Do not start doing them all at once. Take on one and add to your daily routine little by little each new one. This will save you from a lot of pain in the long run.
Posted 8/30/2016 5:20 PM (GMT 0)
Actually, you do NOT want a HOT bath. You actually need to start off with it only warm enough to dissolve the Epsom salts, as if it's warmer than that, you could set off a herx.

You can also choose to soak your feet only in the Epsom salts and peroxide. This is something that I do instead of the full baths because no matter what temp the water is, it sets off a herx for me because it mobilizes too many toxins for my body to effectively move out fast enough. You can do foot soaks twice a day.
Posted 8/30/2016 6:02 PM (GMT 0)
My favorite detoxing is the epsom salt baths....they usually provide the quickest relief for me when I'm herxing.

But, as Traveler said...warm....not HOT. and...perhaps start with soaking feet only.
Posted 8/31/2016 2:26 AM (GMT 0)
Thanks so much for the helpful hints! My doc said I should make the bath hot enough so that I sweat. Glad you warned me it could set off a bad herx. I like the suggestion of trying a foot soak. That would be much easier, too. Does anyone know about the safety and effectiveness of turmeric? I was thinking of adding it to help with inflammation.
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