Further testing for Lyme

[AlyMom]

We have an appointment with an LLMD next week and I want to be as prepared as possible. Please can you share what tests helped you confirm or rule out Lyme?

 

My 4 year old son did Igenex Lyme and Coinfection panel in January with overall negative results

IGM Negative 41 IND

IGG Negative 23-25 IND, 39 IND, 41+++

 

We are getting mixed opinions. Pediatrician and couple of specialists are saying these results are clearly negative. If there was Lyme, the treatment my son has had would have cleared Lyme long ago (2 months on Zith, 2.5 on combination antibiotics). Other doctor disagrees and wants to continue treating my son for Lyme with multiple antibiotics long term due to INDs on specific bands.

 

Can the INDs on IGG mean past infection i.e. if he was exposed his body will always produce something even after the infection has cleared? Can bands 23 and 39 cross react with other infections? Are there tests that can directly confirm the presence of the antigen, not antibody? Has anyone done Igenex urine test with provocation, Muscle testing, Immune Complex testing, or Lyme Culture with success? I am desperate to get a clear diagnosis and open to taking my son off antibiotics for 4 weeks if needed.

 

PS: no known history of tick bite. He is 99% back to baseline since onset in December. Happy and thriving at school and home. We know he is PANS as he flares with a cold and we nip it quickly with Ibuprofen. Only lingering symptom is joint pain at the back of his knees while walking but he is able to run, play and ride his scooter.

 

So confused. Would love to hear what tests helped you.

Edited April 9, 2016 by AlyMom

[lw47]

I think you may want to consider proceeding with more Lyme treatment. My daughter has PANDAS, and she had IVIG a few years ago that didn't help. She had testing results similar to your child, so we had her treated for 2 years with a LLMD. She did better, but then PANS still persisted so she had IVIG again last fall. Her compulsions went away for 3 months, then came back. So I think the IVIG worked for a bit becuase Lyme and Bartonella were treated. At this point it is the autoimmune part, not Lyme or a recent strep infection, causing her remaining symptoms. If we hadn't treated her for Lyme, I don't think she would be as high functioning as she is. She had INDs at 39 and positive 41 like yours, I believe. She was getting fatigued and had sound and light sensory issues and back pain. I agree, it is confusing, and treatment results are not always 100 percent, but you have to follow your gut and listen. 4.5 months of abx would not really treat undiagnosed Lyme. Good luck.

[mama2alex]

Hi AlyMom, Welcome to the forum! I can weigh in on a few of the tests you asked about. Both my son and I have Lyme and co-infections (his is congenital) and we've done a lot of different tests between us.

 

Igenex - We had similar results to your son, with very few reactive bands, and then only IND. I believe 23-25 and 39 are both Borrelia Burgdorferi specific, so they should not be dismissed.

 

Culture - We both went on to do the Advanced Labs culture about 3 years ago, because I really wanted proof positive. We were both positive on the culture. By the way, our doctor wanted us off abx for at least 8 weeks, and my son did the test toward the end of a six month break form abx. This test doesn't really yield false negative, as far as I know, but it is not species specific.

 

Urine provocation - I had a very bad experience with this, and I still haven't fully recovered. I was having low level symptoms and the doctors thought I had Lyme, but we really wanted a definitive test result. I was given several abx to take for five days, but developed debilitating flu-like symptoms and only made it three days. After that, I developed severe roving joint pain, more severe fatigue, more neck and back pain, and brain fog. I've been trying to dig my way out of this for 3 1/2 years. So personally, I view this approach as risky.

 

Muscle testing - We've done variations of this over the years, and I think it can yield important information, but my experience is that it isn't always 100% reliable.

 

Co-infection testing - You didn't mention this, but it's extremely important to know which, if any, coinfections you're dealing with, as they require different medications to treat. Bartonella in particular seems to be a common culprit in these kids with PANS, but the tests for this aren't always reliable. A good LLMD can usually pinpoint co-infections through clinical diagnosis and/or provocation with herbals.

 

Regarding "no known history of tick bite," some families on this forum have discovered they're dealing with congenital Lyme. If you have any health problems or symptoms whatsoever - even if they don't seem Lyme-like to you - I would explore this. Of course, many people with Lyme never see a tick or a rash, so the absence of these doesn't mean much.

 

One last thought - you mentioned he's 99% back to baseline, so you might consider working with an LLMD who will just use herbals to treat infections and focus on building up the immune system, healing the gut, etc. I think when you're very sick, abx make sense, but otherwise I think it's better to be conservative. Some on this forum have done herbal protocols for Lyme and co-infections with great success, so there is a wealth of info in old threads.