Lyme test negative. Dare I rejoice?

[momofadult]

My PANS son's lyme IgM test came back negative!! I am thrilled! I think. Ds had his first lyme test done in September and had 4 positive IgG bands and was negative on IgM through Quest lab's Western Blot testing. Co-infection testing was negative. The big question then was did he or did he not have a chronic lyme infection? After a two week course of augmentin (for posssible lyme) and a round of HD IVIG (for PANS) he had repeat IgM lyme testing through Igenex. The lab was drawn approx 4 weeks after the Augmentin and IVIG when it was most likely that any sequestered lyme would become activated in the serum. These results were negative. (There were IND's at 39 & 41) If this means he does not have lyme I am extremely happy because his case has been so complicated already and lyme would have only made it more so. Haven't heard from the doctor, but can I rejoice?

[pr40]

well, yes, because lyme is so hard to treat!

but there is that other thing, what is the infection behind pandas? did you test strep, myco, etc?

you want to know this because you want to know, first, if there is an ongoing source of infection. then, second, because long term effects of these infections are a bit different.

[momofadult]

The culprit may only be strep- as far as we know- since his anti-dnase levels rose with exacerbations. The positive values for HHV6, parvovirus, and mycoplasma are IgG-based suggesting past infections. His Cunningham panel was "PANS Likely" but I and his doctors are perplexed as to why he has not improved with HD IVIG and multiple PEXs and only temporarily with prednisone. He has remained chronically symptomatic the past 3 1/2 with movement symptoms that also include his eye movements (blepharospasm), gait problems, anxiety, and OCD. His local neurologist said he doesn't know what else to do to help him. What's left? Immunosuppressants/immunomodulators?

[sf_mom]

I think your lack of improvement is telling.

 

If I remember correctly you are in the Bay Area. Since he had slight improvement from prednisone there is obviously an inflammation issue. Have you ever seen Dr. Raj Patel? He is really versed at testing inflammation markers and potential underlying cause. He is also skilled at treating Lyme and has many PANS children. He can help decipher if Lyme is still an issue or if its the inflammation from some other source.

 

The degree IgG titers are elevated and directional movement (hopefully down) when treated is critical when determining past or current infection. For example my mycoplasma IgGs are 2.75 but have dropped since treating for Lyme. I am hopeful they will eventually fall within a normal range.

[mama2alex]

I know this isn't what you want to hear, but these antibody tests are not reliable enough to be the sole basis of a diagnosis. You need to have him evaluated by someone experienced in dealing with Lyme and other chronic infections.

 

I agree with SF Mom - Dr. Patel would be able to help you. My son and I both see him and he's given me my life back over the past year. Feel free to PM me if you have questions.

[momofadult]

Thank you. We saw a lyme specialist, Dr. Sugden, at Pacific Frontier Medical, but will look into Dr. Patel too. Dr. Sugden did not call to discuss the results with me, but signed off on them and had them faxed to us at our request. We weren't asked to schedule a follow-up appt., thus my optimistic understanding was that she did not believe lyme was an issue for him. I hoped the negative lyme results would put the lyme issue to rest and allow us to spend our energies looking at other causes and treatments for his movement symptoms. Lyme symptoms overlap with so many other conditions. As I write this, it makes me realize that I should call Dr. S. and get her definitive opinion on his lyme status.

 

My ds' neurology office called today and is going to schedule a consult with another neurologist in late February since his own neurologist is out of ideas. His current neurologist is so anti-"chronic lyme" that I can't discuss the issue with him. In the meantime, ds continues to shuffle when he walks, pauses intermittently during movements, has constant eye spasms, and tries to manage life with high anxiety and OCD-- all things that weren't an issue until he woke up one day 3 1/2 year ago with a sudden onset of these and other symptoms.

[mama2alex]

Dr. Patel is in the same office space as Pacific Frontier Med, but has a separate practice. You would call the same number to make an appointment with him and they can easily pass the medical records to him with your permission. Again, I would highly recommend you see him for a comprehensive look at your son's medical issues.

[momofadult]

Thank you! I will pursue this.