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The recent Lyme thread here on the PANDAS board, has been circulating around in my mind. I am curious about the immunological results that parents have gotten on their PANDAS kids. If my memory is correct, the parents on the PANDAS board who are pretty sure their children actually have PANDAS, and not Lyme...most of them have reported normal immunological workups (IgA, IgG, IgM, titers in response to previous vaccines...you know the stuff that the docs are using to get IVIG covered by insurance) However, those whose children who have had abnormal workups...seem to be more Lyme cases.

 

I keep reading on the forums that Lyme screws up your immune system so much that it is hard to eradicate bacterial infections...I'm not disputing this. What I am trying to get at is perhaps a possible difference between Lyme and PANDAS. So could those of you who have had immunological workups chime in and tell us if your child has had normal or abnormal immunological workups, and how confident (perhaps a subjective %) you are that your child is only dealing with PANDAS, dealing with PANDAS/PITANDS, only dealing with PITANDS, only dealing with Lyme, or may be dealing with any combination.

 

So, I'll start.

 

My PANDAS daughter's immune workup was normal. I am 100% sure that right now we are only dealing with PANDAS. Also, when this all began, we did have elevated strep titers.

Edited by Kayanne
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Normal, actually excellent, immuno numbers. No history of repeated infections, robust physical health. I am currently thinking we are dealing with Pandas, w/o Lyme.

 

Would like to have another workup- can't bear to put kids through it since they are well and happy right now.

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Can you be more specific about what you mean by normal immuno work up?

 

I thought no rise in titers post strep infection is NOT a normal immuno response, right?

I am talking about IgA, IgG, IgM, Titers in response to previous vaccines...you know the stuff that the docs are using to get IVIG covered by insurance.

 

Truthfully, I wasn't even considering strep titers...they have been so far removed from my thinking about PANDAS...because they don't tell a doctor anything more than that you had a previous infection.

 

I have had it in my mind that strep titers have been an assumption of the medical community, and that they really have not been studied comprehensively enough to say if a titer rise post infection is normal or not...please someone correct me if I am wrong. However, if you want to add in strep titer information, that is okay. I'll edit my original post to include our info on strep titers.

Edited by Kayanne
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DS1: PANDAS... now Congenital Lyme: Normal IGG Subclasses, Strep Pneumo Titers Deficiencies

 

DS2: Thought to have PANDAS (thought to have OCD behavior at 2, rages, etc), CAM Kinase 148, Deficient in IGG 1 & 3, Strep Pneumo Titers Deficiencies (some increasing over time) current Lupus like symptoms, now Congenital Lyme

 

DD: CAM Kinase 159, Severely deficient in IGG 1 & 3, Strep Pneumo Titers (decreasing over time) current Lupus like symptoms. Never displayed OCD, had mild eye tic with last fever and full body rash, current Lupus like symptoms, now Congenital Lyme

Edited by SF Mom
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Can you be more specific about what you mean by normal immuno work up?

 

I thought no rise in titers post strep infection is NOT a normal immuno response, right?

 

Our blood workup was done after months of abx, and a couple months after that last strep infection. My understanding, as was explained by our pediatrician and Dr. Murphy is that strep titers basically tell you that there was a strep infection present (which we already knew b/c of positive cultures) and that abx treatment can affect them. They both concurred that they are not indicitive of PANDAS or not.

 

I should also mention, that our entire medical team agreed (including our neuro) that my son's titers may not be reliable either because of his age - pre-schoolers tend to not test reliably in that area.

 

I'm not an expert - I know others on here know much more than I about this issue - but thought I'd pass along what I knew.

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I do like trying to figure out which pandas kids have differing symptoms from Lyme. I did informal discussion on Cam K scores on Lyme board to see if possible higher Cam K's in general than pandas (like SC) seems to be a possibility (but only Dr C would know that for sure.

 

We don't know if ds could have lyme. He has very minor overall Igg def. (not nearly as def. as need to get covered by insurance) and minor subclass 1 (or was it 3) def. He failed almost all of the pnemoniae titers. We didn't do the challenge re-vax, so don't know what that could mean as far as how much of the general population fails this test as well - it seems like alot do, since they were telling me about the re-vax testing before they even did the initial blood draw for it.

 

I was surprised that DS had these def. at all. He's relatively heathy (except for the pandas) he did have pnemonia when he was 6 years old. No history of frequent ear infections, asthma, allergies.

 

another thing to ask about might be - vit d levels and ferritin (or iron ) levels. My son was a bit lower than he should be in these areas (not low enough to be out of range, but low enough for Dr to say he should get some iron supplement) and recently read something on some lyme board saying this common trait for lyme patients?

 

So, my data probably won't hep you bcs, we don't know if ds has lyme, but I will be following the thread to see if we can find some commonalities.

As for the strep titers: I'm not sure titers considered when considering normal immune function. Many people in the "normal" community do not have titer rises when they have strep, and it can be for different lengths of time, and I know that at least ASO(or was id the anti Dnase B?) does not rise in cases of certain kind of strep (impitego, peri - anal)..so...that is a tough questions. So, maybe not from an imune response stand point - but having a known strep link, vs having a questionable strep trigger that might help. We have a questioable strep trigger (now think son had mild peri-anal strep 2 months before first symtoms..by the time titers drawn - 9 mos later - they were normal (and one doesn't rise for this type of strep, so, relying on one titer) . No history of strep throat.

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My daughter is immune deficient. Low IGG levels, Failed subclass 1 and 2. Failed Pneumo titers, were revaxed, made a response to the revax. She scored 174 on Cunningham, just found out her other parts were normal except for anti-tubulin was 3x normal. Does anyone know what that means?

 

We saw Dr. L. last year, got our diagnosis, but later in fall also got bitten by a tick. Currently, I think she is positive also for lyme. I think we started as a clear pandas case, but she gets everything she is ever exposed to. I think because her immune system is so poor, she doesn't really have a fighting chance.

 

She was positive on Labcorp for a band very specific only to lyme (I don't have it in front of me maybe 23). We saw Dr. B last month because we can't keep ignoring the growing immune issues, she is always sick. He ordered more tests and the igenex. We go back Monday to look further at her immune system to get more results. I think the igenex tests will confirm Lyme. From my limited experience reading about how to interpret the results, igm 41 and 83-93 indeterminate. Igg 30, and 39 single +; 41 +++. I think 39 is the critical band here.

 

It is my understanding that we just happen to have an immune deficiency and pandas (and now Lyme) it is not necessarily related. Am I correct? I think we are going to be diagnosed with cvid for the ivig, and that will help with both conditions. For those with immune issues, has it helped with the getting sick? My daughter is now homeschooled because she was getting too sick at school. How do they do the ivig dosage since it is higher for pandas and lower for cvid?

 

That is our story in a nutshell.

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My dd, who I believe is strictly pandas (still awaiting igenex test results but not expecting positive based on symptoms and benefits of hdivig) failed all 12 of the pneumococcal antibody panel. She had elevated C3d and normal aso and anti-dnase b titers.

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My dd, who I believe is strictly pandas (still awaiting igenex test results but not expecting positive based on symptoms and benefits of hdivig) failed all 12 of the pneumococcal antibody panel. She had elevated C3d and normal aso and anti-dnase b titers.

So then, her IgA, IgG, IgM and other titers (ones she was vaccinated for) were all okay?

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