Liver tests and others back

[JAG10]

My dd11 had some lab work done last week in response to super elevated AST and ALT results. On June 2, day two of her 4th IVIG, we learned her liver enzymes were way out of wack.

 

AST- 336 (range 12-32)

ALT- 729 (range 8-24)

 

ALL medications were stopped; Zith, bactrim, ibuprofen, fish oil, vitamins, we didn't do the usual post ivig prednisone; NADA. We waited two weeks and repeated labs on June 15.

 

AST- 53

ALT- 68

 

Still high, but much, much better!

 

Now.......for the rest of it.

 

Hepatitis:

They ran a hepatitis panel which I don't think is helpful for Hep A. Her total Hep A was reactive, but this could be from vaccine; the only way you know is to run Hep A IgM. Hep B was reactive for vaccine all others negative.

 

EBV:

She had an EBV VCA panel done in Feb 2010 which was IgM negative indicating at that point in time she had not been exposed to EBV.

This time, she was IgM negative, but EBV VCA IgG was 4.29 H. Soooo, sometime between 2/10 and now she had EBV, but not within the past 8 weeks which I'm thinking likely means not the cause of her liver woes? Does anybody think she could have EBV IgG from the IVIG because otherwise my girl is not only asymptomatic of strep, but EBV too.

 

White Blood Cells:

This is probably the part that I understand the least, thus concerned about the most. I'm going to list past measurements, current and range.

 

White blood cell count: Dec 09= 6.9, Nov 2010=6.2, June 2011=3.5, Range=4.5-13.5

Absolute Neutrophils: Dec 09=2519, Nov 2010=1538, June 2011=931 Range=1500-8000

 

So, her white blood cells that are responsible for fighting bacterial infections are depressed. This too can happen from a virus or be part of an autoimmune disorder. Am I the only one who feels the answers are becoming way too predictable?

 

I received these results in the mail, so I haven't gone over them with Dr. B., thus my confusion and anxiety runs wild. We see him a week from Thursday unless I get to speak with someone in his office prior to that.

 

Does anybody see the big picture with all of this?

 

Jill

Edited June 20, 2011 by JAG10

[kimballot]

Jill -

 

I am sorry about this. It does sound scary and I can only imagine where your mind is going (probably in many directions at a mile a minute!).

 

You might want to PM tpotter - she has dealt with highly elevated liver enzymes recently. Also - I am trying to remember if your daughter has lyme. I recall that doing something with white blood cell counts...

 

Please keep us posted. I have been hearing so much about liver enzymes lately I feel like it is a foreshadowing as my son will have blood drawn tomorrow for liver funcitons.

 

Best wishes to you and your DD -

[JAG10]

Hi Kim- I'm actually encouraged her AST and ALT decreased so significantly in such a short period of time. I'm guessing the Bactrim really disagreed with her body although symptomatically she showed no reaction to it whatsoever. The body's white blood cell count can decrease from medication also, but I'm not sure that is what is going on with her since it has been trending downward over the last 18 months. We'll see what the doc says.

 

I guess the middle of the night post is indicative of my anxiety, huh?

[kimballot]

I guess the middle of the night post is indicative of my anxiety, huh?

 

LOL- That was the first thing I thought when I saw the time on your post! Then I realized that I was SLEEPING at that time... which means things are either a bit better for us or I ran out of internet web sites to search for answers!

 

Hoping you get some answers soon!

[tpotter]

[i was just going to respond, and then I saw kimballot saying to contact me. So, here's my take.

 

Another forum member (I don't remember who...sorry), PM'd me after everything that was going on:

 

The symptoms of low WBC, increased liver enzymes, and spleen enlargement (I know your DD didn't have that, but maybe it hasn't been found, either...my DS did have it suddenly), are all symptoms of Babesia (did I spell that right?)

 

Also, my DS turned out to be positive (very slightly) for Ehrlichiosis, and when I looked at those symptoms, he very, very definitely had them. There are other co-infections, too.

 

We had elevated ASO (IgM) and elevated MycoP (IgG.)

 

Dr. B. agreed with us that there was definitely infectionn present that wasn't going away.

 

We also stopped all oral abx (because of the elevated liver enzymes, which we thought were just coming from the oral abx,) but within 1 day, he was extremely ill. That's when we found everything else...got blood work, ended up at the ER. They didn't seem at all concerned about the enlarged spleen, which blew my mind, because he had also had pancreatitis in November.

 

Alll that being said, we are having AMAZING results with IV abx. Within 2 days, his stretch marks (that LLMD thought was bartonella, but wasn't responding to oral abx) started to go away. He was only supposed to get them for 1 week (we have also had good results to date with IVIG, and I do think that was necessary, at least at first), but with the results we have gotten, I spoke with the LLMD (because of the stretch marks), and he said to continue the abx for another week. That turned into another month, and we just added a 2nd IV med, and will be doing it for at least another month. Chronic nausea is gone, stomachaches are gone, headaches are way down (symptoms of erlich), stretch marks are WAY better, memory is greatly improved, liver enzymes are back to where your DD's are (they came down within 1 day), spleen is back to normal, WBC is back to normal, etc.

 

I don't know if you ever got checked for lyme, and I don't want to start everything all over again, but there's now no question in my mind that we are dealing with strep, autoimmune issues, lyme and co-infections, and goodness knows what else (probably because the immune system was so messed up.) IV abx has been an amazing option for us (thank goodness I fought so hard to get someone to do it...it's not needed for everyone, but certainly is for my DS.)

 

Forgot to mention that he only tested positive on 1 IgG band on Quest Western Blot, and the Igx that we did AFTER all the symptoms started last month, came back with Erlich only slightly positive. One of the members of the lyme forum posted that bartonella can stifle the test results for all these infections.

 

PM me if you want more information.

Edited June 21, 2011 by tpotter

[JAG10]

The symptoms of low WBC, increased liver enzymes, and spleen enlargement (I know your DD didn't have that, but maybe it hasn't been found, either...my DS did have it suddenly), are all symptoms of Babesia

 

Hey Trudy~ You obviously had much more than low WBC and high liver enzymes that convinced you Lyme was in play because any bacterial infection can result in low WBC and high liver enzymes...but as high as my dd's were, Dr. B was most suspicious of Hepatitis A, or EBV and most obviously the abx which based on her dramatic improvement is the likely culprit. I suspect the Bactrim put her over the edge and resulted in NO behavioral changes or rashes. We have exhausted the lyme route to our satisfaction and as my dd's case proves....all these abx to trial despite 3 negative WB does not come without a price.

 

That being said, I'm very happy for you that Lyme treatment is yielding positive results. I'm not "anti-Lyme", it's just not the cause of every ailment.

[JAG10]

This is an interesting article on IVIG and passive immunity.

 

http://cmr.asm.org/cgi/content/full/13/4/602#SEC2_1

[tpotter]

All I'm saying is that hep A and hep b were also suspect in my DS, as were the abx he was taking. And, in fact, the abx were causing problems, but in his case it was that the oral abx, as a whole, stopped working for him, and were now causing additional problems, in addition to now what appears, clinically to also be lyme.

 

I'm not saying that everyone has it, I'm just saying that, although I really wasn't expecting it to be lyme, or even wanting one more battle to deal with, plus the WB came back negative, I couldn't ignore what I was seeing clinically. Perhaps it's not even lyme, but just responding to the IV abx. But, there's also no question that we're also dealing with PANDAS, strep (his ASO was elevated, too.,) and that PEX and IVIG have definitely helped both my kids (personally, I think PEX more than IVIG, but that's another discussion, and not an option, either.)

 

Again, I don't want this to turn into a battle, and I'll back out of this one.

 

I'm really glad all her numbers came down so quickly.

[P_Mom]

Hi Jill!

 

I have been waiting to hear about your daughter. YEAH! Good to see her numbers dropping (liver enzymes). Anyway.....I bet the farm that the next time you get everything checked...her enzymes will be even lower and her white blood cells will have recovered completely or be really close. (given she stay off meds) My opinion is that the problems are strictly medication caused....and now she will recover now that she is off. The same thing happened to me ...my white blood cells decreased significantly when on my "lyme" meds....came off meds and they recovered. Also, I would not consider a downward trend in her WBC counts from 6.9 to 6.2 anything measurable...it is such a minute difference that it can't be counted as significant.....just typical lab/cell fluctuation. Your real drop in WBC's came in June. (neutrophils can very widely .....depending on exposures)......anyway....you are a smart cookie......you'll figure it out and she will be fine!

 

geez....good thing I proofread.......I left out the o in counted!

 

 

p.s.

I do thnk the reason some kids are getting strep/infections while on multiple, high dose antibiotics is because of this very reason.....at times these meds can lower your body's natural ability to fight infections......you just get more susceptible. I am an advocate for the lowest, MOST EFFECTIVE dose possible to control PANDAS/strep.

 

Happy recovery!

[mdmom]

tpotter....I PM'd you. I'm interested in IV abx for Lyme.

 

amy

[JAG10]

geez....good thing I proofread.......I left out the o in counted!

 

Kelly, you made me spit out my iced coffee!!!!

 

Trudy- I honestly do not mean to sound abrasive. Here is the bottom line in my head; symptoms or lab results typically reported here by parents are usually the result of bacterial or viral infections, medications or autoimmune process. All our collective efforts to nail down symptoms or biomarkers to differentiate devil A from devil B have not yielded much that can be agreed upon. If the parents are convinced their child has an infection, but cannot tolerate oral abx, then IV abx sounds like a logical alternative.

 

I think Kelly is right in my dd's case.

[PhillyPA]

I did spit out my coffee! That was to funny P.Mom.

 

For what is it worth, when my son was treated for Lyme disease with IV antibiotics I got a warning from his Lyme doctor. He told me that IV antibiotics effect something in the brain (can't remember the exact part so I will leave it out and not guess) that improves cognition and focus and a whole lot of other good things. He said even if my son did not have Lyme disease he wanted me to know about these possible effects. He said that the positive effects on gluta-something part of the brain could last 6 months to a year. He warned me about this because it turned out that we did 6 weeks of IV antibiotics and my son turned out not to have Lyme disease.