Is 1 band of lyme enough?

Hello, there, first post here as i want to ask other lyme sufferers this question.

3 years ago i got encephalitis and it triggered M.E. Since then i have been a moderate to severe M.E. sufferer with most of my symptoms being in my brain- ex, severe 24/7 dissociation, inability to feel any emotions, inability to feel time passage, bouts of psychosis, dementia and delerium, memory loss, amnesia and plenty of physical symptoms, too.

Ive been tested for lyme probably a dozen times throughout this but the only thing that has come back surely positive is bartonella and c. pneumonia. However, about a year ago a quest test came back positive for bands IGG 39 and 41. This prompted my doc to investigate further so i did a LabCorp test as well as Stoneybrook. Both came back positive for band 41 IGG only. I was then sent to an LLMD who tested me again, Western Blot, ELISA and C6 peptide and again, all negative except band 41 on WB. I also had a spinal tap on this journey and that showed negative for lyme, too.

I know a lot of my symptoms can be assocoated to Bartonella but the original band 39 and subsequent 41's make me raise an eyebrow. My llmd seems pretty sure i don't have lyme but i want to ask those who have been through it.

Thank you for any help.

Welcome Aerose91!

Sorry for the reason you're here but glad you found us.

Girlie already explained your test results and I, too, wonder about your LLMD.

Although, it seems even some ILADS LLMD's are now wanting positive test results before entertaining a diagnosis...maybe due to the persecution LLMD's face?

At this point, it might be a good idea to pursue treatment for Bartonella because some of the antibiotics used for that can also help with Lyme.

In the meantime, please read through the "New to Lyme" thread at the top of the forum. There's lots of useful information in there.

That's a good idea to start detoxing before you start your antibiotics.

Yes minocycline is a good antibiotic for Lyme...I was recently on it for 4 months - and after a month added Rfampin to it to treat Bartnella.
I had requested it because of its ability to penetrate the blood/bran barrier.
After 9 1/2 months of other antibiotics, I still had the feeling of pressure in my head behind my eyes and was off balance. After taking the minocycline for a couple of months, those symptoms resolved.

I started with mino at half dose (100mg once daily)for a week...and then went to 100 mg twice daily. After a month of mino, I added Rifampin at half dose 300mg once daily and then after a few weeks increased Rifampin to full dose - 300 mg twice daily.

The mino caused dizziness at first.

Regarding false positive test - no, more like the subsequent test was a false negative.

I've also read that if you have band 41, then you definitely have Lyme. Bartonella suppresses antibody production so it's hard to get a positive for Lyme when you have Bart. I tested positive for Bart also and clinically for Lyme and Babesia. I've never tested positive for Lyme or Babesia but have had 1-3 different bands come up when I get tested every 3 months. I have classic signs of all 3 infections.

Inspiredby3 said...
I've also read that if you have band 41, then you definitely have Lyme.

This is not true. 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.

A "Lyme specific band" (like Band 39) means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. 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.

And you may need to take care of your mold issue before you can heal from Lyme - at least that's what the majority of those that we talk with have discovered.