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I was looking over some of DD's lab work from our first visit with Dr. B. I never realized that some things looked suspicious to me until recently, because they were in the "normal" range. Anyone have some insight for me for these:?

 

Her Vitmamin D was at 32. Sufficient is 30-100. Insufficient it 10-30. So, I would call this borderline insufficient and not sufficient. I just feel like the normalness is too low... I mentioned this to Dr. B today and he said I didn't need to supplemet. It's still in normal range.

 

Her TSH was "highly sensitive" at 4.02. Range is 0.27- 4.20. Again I would call this normalness "borderline high". Like hypothyroidism. Again, Dr. B wasn't worried.

 

Her IgG subclass serum was 729. Reference range is 592-1723. Hers seems a little low. Her LLMD mentioned to me that he thought it shouldbe over 1,000. I mentioned this today and he said not to worry, she is young (5), and as they get older, the numbers rise.

 

Her IgG 1 was 431. Reference range is 308-945. Hers again seems low.

 

Her IgG 4 seems really low to me at 9.4. Reference range is 2-112.

 

Am I just being overly concerned here?

I just do not understand IgG's and what the subclasses mean. I tried to research, but I find I make myself more confused.

 

She also has low granulocytes and high lymphocytes, which meand some kind of disease/ disorder.... Could this be from her IgG or ehrlichiosis or just her body fighting PANDAS?

Edited by colleendonny
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The thing that jumps out at me is the TSH. Some labs still use that old range, but the new range is .3 -3. Personnally, at 4.61 I felt like death. In a funny sort of way thyroid problems are like PANDAS -- I mean some docs say 4.2 is not high enough and other would definitely treat. I would request a full thyroid panel which includes TSH, T3 and T4 tests. My TSH was "subclinical" according to my regular doc, but when I found a "thyroid" doc and he ran the full panel we found out that my T3 was almost nonexistant -- T3 gives you energy. No wonder I felt so awful:) You can google symptoms -- I reccomend Mary Shomon's site. Mary's site also has a list of "thyroid" docs -- that's how I found mine.

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My son also had a tsh of 4 or five i think which is a little high but his other thyroid antibodies were in normal range,so the doctor just had us check it in a month. When we checked it a month later it was back into normal ranges. For some reason I think pandas affects this test when they are in a flare.

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Has the LLMD seen all these test results? I think Aidan's vitamin D is around the same level as your DD and our LLMD is having us give vitamin D3 drops to supplement. You can buy these over the counter.

 

Just recently Aidan had low T3 and T4 was low end of normal. Not exactly your situation but our LLMD said that this is common in Lyme patients- wondered if that applied to any thyroid inbalance such as your high TSH level. I also wonder if this was equally common in PANDAS. Our LLMD suggested low dose armour thyroid which is a prescription.

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It's interesting to me that these IgG ranges are different fOr all of these kids. My sons total IgG was 705, based on the range you were given it would have been normal - low end but still normal. However, our range was like 842-2000 - - so he is pretty low! Different ranges for age or something I wonder?

 

We also had low vit D, his was 17.

 

Is this common amongst Lyme patients? I am trying to decipher what is pandas, what might by Lyme and what might be on the "I don't have a clue" list?

 

Colleen, I don't think you are overly concerned. With kids as sick as ours, we can't leave any stone unturned. Follow your gut, I say

Edited by fightingmom
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I'm not going to say "don't worry" but if it were me, I wouldn't chase down additional specialists looking for cause until you give the lyme/ehrlichiosis treatment sufficient time and then re-test. IG levels, lymphocytes and thyroid could all be effected by chronic illness. So you may already be on your way to addressing these issues and seeing additional doctors may only cloud the picture because they likely won't factor in how your known infections are part of the equation.

 

I get how this is distressing, but knowing the road ahead of you (having been on the same road), I'd personally stay on that path and see how labs change over time rather than adding additional docs and/or treatments into the picture at this point. JMO.

 

Re: the Vit D - our LLMD and my naturopath both feel that everyone in New England should supplement year round with D3, except maybe for July/August provided you're out in the sun and not holed up in an office. Many people with chronic infection are going to be low on D and most New Englanders will be too. So if you're in both categories, it's pretty much a given.

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The only thing our LLMD about these results was that he expected her IgG serum to be higher, like over 1,000.

He or Dr. B didn't mention her vitamin D, but I think I will supplement.

Dr. B said that since DD is at 90-95% right now, then I can discontinue her Azithromycin. I did contact LLMD and her IgG ehrlichiosis is still the same as it was in December. I mentioned Dr. B said to discontinue it and he said it was ok.

I'm nervous to do so, but they both have given the ok and said if symptoms come back, we can add it again.

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In my experience, drs do not get worked up over results until they are waaay out of range.

 

Is this the right was idk.

 

 

My sons tsh is 5.25. No one was concerned because his t3-t4 were normal. Pedi said they wouldnt do anything but watch it. I did get it double checked.

 

So my gut would say to you, dont go to childrens. Let our pedi know. He was open to following it.

 

 

My dd vit d was 27. I was also told no.big deal, will go up in summer. I give her 4k units a couple of timed a week.

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Vitamin D--- While mainstream medicine is still saying 30 is normal range, many many medical professionals would say 50 is a more appropriate minimum. Our DAN doctor supplements with D3 if under 50. And it takes a LOT of D a day to get the numbers up (we take 7000 per day, but you need to have it tested before you take this much D. Please have it checked before supplementing above the recommended dose, and use D3 only.)

 

Low IgG--my daughter's is in the 400 range, and the DAN doctor believes it is too low. He does not like the idea of doing IVIG to get this number up, but is treating her immune system as a whole.

 

TSH--My daughter's TSH was in the borderline "normal" range as well. Mainstream endocrinologist did nothing at that point. My daughter was gaining weight at an incredibly rapid rate and had all symptoms of an underactive thyroid--dry skin, extremely low body temp, in addition to the weight gain. Our DAN doctor did additional testing and found that, although daughter's body was making enough thyroid hormone, her body was not converting the thyroid hormone properly. He addressed it with supplements, and it corrected. All of the symptoms corrected, and she returned to a healthy weight.

 

Many PANDAS kids have severe immune issues that affect many parts of their bodies, in addition to their brains. My daughter and son are extreme cases, with severe chronic health problems. The immune systems and methylation pathways of these kinds of kids are typically a mess.

 

Dr. B is very knowledgeable about PANDAS, and very kind (we have seen him also, and my daughter did IVIG there. He was not the physician we needed,though, as my kids have had PANDAS too long, and their PANDAS is too complex (both were teens when diagnosed.) Dr. B was very helpful to us though, in that he detected daughter's mycoplasma infection, low IgG, and positive ANA, which no other doctors had found. Antibiotics and IVIG made my daughter's PANDAS worse, however. (I do believe IVIG can be helpful if the PANDAS is diagnosed early and young.) We now see a DAN doctor exclusively for the PANDAS issues, and he has been the most help of any physician we have seen.

 

Pam

(I am NOT a medical professional, and this is NOT medical advice. Always check with a trusted doctor before you try new things. And yes, finding a doctor you can trust is the tricky bit.)

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