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Recent CDC negative WB test - with 41 reactive band...?

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Posted 4/29/2014 5:52 PM (GMT 0)
So since I'm new to the S. FL area I've been to a couple of different primary care docs now, the most recent one I saw was kind enough to call me and actually discuss the Lyme test results... Though it was IgG & IgM negative, he was aware of my concerns and called to tell me. I did, however, have one reactive band and that was 41 IgG.
I've since seen an LLMD, started abx, and I'm awaiting my Igenex results, but I thought in the meantime I'd ask you guys what you think about the 41 band being reactive on the CDC WB...? Based on my symptoms (very long list: tooth pain, headaches, face pain, insomnia, twitches, muscle pain, joint pain, burning, tingling/numbness, shingles, symptoms moving around/coming and going) etc. and this positive band, and the LLMD's clinical diagnose - do you guys think it could be lyme? What else could it be with 41 being positive?
I guess a better question...Has anyone else had a similar experience? Just 41 IGG showing positive on the CDC WB and still had lyme?
Thanks for any help.
Posted 4/30/2014 12:19 PM (GMT 0)
Hello, Delmar,

I haven't had just 41 showing, but with all your symptoms, well, sounds very much like LD. I am of the thought that these tests that show hits but come up 'neg' are like saying the person tested a 'little pregnant' but 'isn't'. And, we all know that isn't a reality. Someone either is or isn't.

A hit on line 41 means the following:

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia.

I got that info from the "New to Lyme.... Start Here" post. Lots of great info on there if you haven't read it yet.

Hang in there. Don't give up. Talk to us here. This is a great support group. Many here have been through all of this, so they know.

I'm glad you're already on abx, and that you have the IGeneX test. We'll want to here how that turns out for you. First and most importantly is that you are not imagining all this stuff, it's really happening, and you can get better. I don't know what that means for you and your path, but even though the road might be bumpy, hang in there.

Hope to hear good news, and that you are getting quality care.
Posted 4/30/2014 12:22 PM (GMT 0)
I have seen several people here on this forum who have had similar experiences as yours. The clinical diagnosis is what really counts.

Band 41 shows the presence of flagella tails. That means Borrelia bacteria, or syphilis, or the bacteria that causes periodontal disease (you'd have to have one rocking case of gum disease for those to show up like that, however).

The real proof will be how you react to treatment. If you get better or if you have a sudden increase in symptoms and then get better(Herxheimer reaction), that means you are on the right track.

It's great you have a good, knowledgeable LLMD. Happy healing!
Posted 4/30/2014 12:55 PM (GMT 0)
Thanks for the replies. I have dentist appt this morning for a regular cleaning and just to check my teeth b/c I've been having the pain in my teeth/occasional shooting pains (mainly in my front teeth), but my gums look fine and I've only had one cavity ever in my lifetime. I have very healthy teeth/gums, but I guess I'll find out for sure today. Assuming I don't have periodontal disease or syphilis (I've had many STD tests and had one rbefore I had my boy about 2 years ago... i think theu would have tested for syphilis...) then I can assume I have lyme, am I understanding 41 correctly? No periodontal or syphilis = Lyme
Posted 4/30/2014 4:00 PM (GMT 0)
The dentist said my mouth is "boring", no issues what-so-ever. He laughed at me when I asked about periodontal disease.
But he couldn't explain my tooth pain...
Posted 4/30/2014 4:27 PM (GMT 0)
Wow, great news to hear that your mouth is fine!!! Sad to hear the Dr has no idea what's going on. It's more than likely LD/co. As long as the teeth aren't falling out, like mine have, and the gums are good, you shouldn't worry, except the pain is awful, I'm sure.

Just don't give up. Hang in there.
Posted 4/30/2014 5:05 PM (GMT 0)
Thanks for the response. I'm so sorry to hear about your teeth. How did it start? Did your dentist diagnose you with periodontal disease right away? I am very sorry. It seems LD can cause some very serious problems.
I was concerned b/c the pain gets so bad, and at times my teeth feel very fragile/weak, almost like they're loose. And then, just like every symptom I've had, I wake up one day and its gone and something else hurts/feels weak/have weird sensations etc.
I've read that LD can cause periodontal disease so I suppose I'm not 100% in the clear, but I'm glad I have a baseline with a dentist near by, so if things change they'll know in a hurry.
Posted 5/1/2014 12:45 AM (GMT 0)
Hi had had a lot of dental pain and tooth problems. My son did also. He tested posted on band 41 only nad had many issues. Numerous people on the board here came back band 41 positive only.
Posted 5/1/2014 1:03 AM (GMT 0)
so may I ask everyone - you can come back with only IGG band 41 (not IGM) and have symptoms? This is the one mystery I haven't been able to figure out. Most of the "books" say IGM is a current infection and IGG represents a past infection, but on the igenex website, it says the IGG can represent a past OR a current infection - so I just wanted to clarify this, thanks!!
Posted 5/1/2014 2:30 AM (GMT 0)
41 was the only band positive on my lab corp WB when I first saw my doctor d/t symptoms. She told me that I did not have lyme. Well, 4 months, 1 rheumatologist, 1 neurologist, 1 neurosurgeon, 1infectious disease doctor, 10+ doctor appointments, 3 X-rays, 1bone scan, 1 MRI, 1 EMG, 10+lab draws, and 3 rounds of steroids, muscle relaxers & antiinflammatories later, my IgeneX showed 6 bands positive.
Posted 5/1/2014 4:12 AM (GMT 0)
Shelly, I just need to say that is crazy to hear the long road you
have taken just for an accurate Lyme test. There should be a law
against being told "No you don't have LD!" Maybe in the future things will change with the healthcare system.

Good luck with your treatment.
Posted 5/1/2014 12:59 PM (GMT 0)
It really is ridiculous that people have to go through this. Igenex should be the standard for LD testing... People shouldn't have to pay thousands out of pocket for appropriate testing and care when they've worked hard and pay for insurance. I've never realized how corrupt our medical system is... Something has to change here.

Shelly, I'm in about the same boat. I've had to push my way through the medical system. Since October I've seen 13 doctors. 3 neuros, 1 rheumy, 1 surgeon, 5 primary's, 1 obgyn, 1 dentist & last, & MOST important my new LLMD. I've have tons of blood work and urine tests, a CT scan of my neck/chest/ab/pelvis (thanks for all that radiation...:(), spine and brain MRIs, 3 X-rays, EKG, and an echocardiogram.
Its just unacceptable.
Posted 5/1/2014 1:06 PM (GMT 0)
More research really needs to be done on this disease. It seems this is a MUCH bigger problem than given credit.
I'm SO so happy I stumbled onto the fibromyalgia forum and someone told another person there about LD and the failures of current CDC testing, finding an LLMD, and testing through igenex. Without reading that bit of info, I probably would've accepted a fibro diagnoses, started treating those symptoms, and tried to move on with life the best I could...
Posted 5/1/2014 9:32 PM (GMT 0)
Hi Delmar,

41+ is the Lyme flagella, it is a tail of any kind of spirochete infection. There IS however one other thing that could possibly be detected by 41 + and this was reported by another doctor, that is antibodies to EBV (epstein barr virus) or mononucleosis. If this is the case almost everyone would test positive for 41 since so many people carry this virus! I was just watching a Lyme talk on youtube and a Doctor said this 41 can be from viruses. Another Lyme Doctor said 41 is the first protein to turn positive but maybe he just thought that when he was looking at all his patients results because they all consistently had 41 already positive from the EBV. But he thought it was the first protein to go positve. Maybe we don't know for sure on this 41 band.
Posted 5/2/2014 1:30 AM (GMT 0)
I have read that the first band to produce positive for infection is band 41. There have been numerous members on here who tested positive band 41 and were very ill with lyme symptoms.

Use the search function on this board and search for band 41.

Also I am beginning to wonder about the mode of transmission. There are way too many people falling ill.
I think there is documentation of sexual transmission and the blood supply being contaminated. They dont even have accurate tests to detect the disease so how can they screen blood ? I have also reading about how beef cattle are commonly infected. And with some of these infectious diseases, even though the cattle receive antibiotics, the infected cattle remain carrier reservoirs for the rest of their life even after treatment. The only way to maintain the herd is to remove the carrier from the rest of the herd.

Post Edited (BarnGurl) : 5/1/2014 7:41:32 PM (GMT-6)

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