Some questions about strep levels...

[l_kelly]

Hi there.

I'm trying to do some research about my daughter and I've found that you folks are very knowledgeable and helpful. So, I'm hoping maybe you can help me out. My daughter (age 7) had a bite on her back that looked suspicious to me (bullseye rash). Her ped. didn't want to do anything about it so I took her to a well-known Lyme doc in my area to make sure we took care of it properly. They started treating her for Lyme and ran some bloodwork.

 

While running the bloodwork they discovered that she had abnormally high levels of strep. She occasionally complains about stomach aches so they did a stool sample and also found strep in her gut. The doc there is pretty concerned about these levels and has mentioned that it could potentially cause reactive arthritis, PANDAS, etc. She wants to treat it pretty agressively with antibiotics in an attempt to debulk the infection.

 

I am feeling a little bit torn because my daughter doesn't really have a negative symptoms. So, it's hard to treat her agressively. Here are the results of the blood work that she has had once a month through the summer:

 

Date....Strep..ASO..DNaseB

5/10:...400....686...1360

6/10:...400....675...1360

7/10:...400....625...1360

8/10:...400....480...1360

9/10:...200....???...1920

11/10:..200....343....??

 

From 5/10 to 9/10 she was on Ceftin. They wanted us to start Vancomycin but at that point I was starting to question whether we were doing the right thing. They suggested my daughter have her tonsils removed and recommended an ENT. That ENT said her tonsils really don't look like they should be removed and suggested I talk to an Infectious Disease doc about her blood levels. The Infectious Disease doc said her levels are indicative of a past strep infection and we should stop putting antibiotics in my daughter.

 

So, now I feel stuck. The lyme doc says she understands our hesitation but feels we have an opportunity to prevent some pretty serious problems that she has seen kids get down the road.

 

Do you guys have any experience or advice to offer? Do these levels in her bloodwork look way out of wack to you?

 

Thanks so much for your time and insight.

Lisa

Edited December 3, 2010 by l_kelly

[Fixit]

JMHO...they look out of wack to me.

 

so she is not experiencing any problems other than the wacky numbers and chronic stomach ache???...how long have the stomach aches been happening???....

 

i do understand concern over long term abx...that can cause other problems down the line....

make sure you give enough quality probiotics....

 

the numbers do look like they are going down....you could wait another month or 2 and see what happens, if they continue to decline and her stomach improves...i would keep a close eye on those....

 

imo...i would definitely consider removing tonsils...many here includeing my own ds...had ent say they look fine, just to find them pitted, schriveled.etc.....and so would harbor other infections....again maybe wait to see how she fairs in the short term....and you don't want any of the numberous problems step can cause.

 

any results from the lyme tests?

[l_kelly]

Thanks for the speedy response. Ella has had stomach aches on and off for a while. For a bit we thought they were from riding in the car, then we thought they were due to her diet (she's not a very good eater). She tends to be dramatic and does have some nasty tantrums. But we always chalked that up to just being her.

 

The lyme doc said she could detect the slightest bit of inflammation in her joints and Ella has recently started "cracking" her ankles (which the lyme doc said is how children often respond to an achy feeling).

 

All lyme tests at this point have been negative (which doesn't actually mean a lot). But the doc said with our early response to the bite we should be in good shape. We just need to keep our eyes open for any future symptoms.

 

The lyme doc also said something about the anti-Dnase numbers typically going up before going down with treatment. Haven't seen anyone else say that.

 

Thanks again for your help.

[Fixit]

Maybe you did catch it quick..that would be good...

literlly just got off phone with friend who found out she had lymes one week before being diagnosed with cancer...(this was years ago).

they treat it with 3 months of abx...but i think with the chemo reducing immune system, she still has lymes...

trying to convince her to get rechecked...(now that i know so much in my own mind )

Maybe someone more versed than myself will give you some thoughts....but it sounds like you have it under control!!

[EAMom]

were all the strep titers run at the same lab?

[l_kelly]

were all the strep titers run at the same lab?

 

 

Hmmm. The first 4 were from Quest and the last 2 were from Labcorp. Can that make a big difference?

[JAG10]

I would think it makes a difference because Quest's "tilt" measure is 1360, so they reported the results as >1360 and you don't really know how much over the tilt measure it was. Therefore, it technically looks like the aDNAse B titers rose, but actually they may be falling just like the ASO. Either way, they are very elevated for over a 6 month period of time. Some folks will say how high the titers are makes no difference, but in my experience of seeing 4 PANDAS experts, they all said titers that high are significant.

[mom love]

Well, it is good that you went right to a llmd. It seems many pandas people on here end up there after years and years. So, those strep numbers were high, and are still high although obviously responding to the abx. So is your child not on ceftin now? on anything? Did the lyme doctor put your child on ceftin for the lyme or the strep? Why do they want to use vanco now? To target what? Drama and tantrums and moodiness can definitely be pandas. I think you were very lucky to have found this sort of by accident. Now you have to decide if you want to at least to prophylactic abx or nothing and continue checking titers right? Do you have other children?

 

By the way, has her eating improved any since May?

 

Can I assume the lyme doctor checked for mycoplasma pneumonia as well?

Edited December 6, 2010 by mom love

[l_kelly]

Well, that is interesting info about the different labs. I had wondered why the lab said ">1360"...that makes perfect sense.

 

Ella is not on any antibiotics now. She was on ceftin to cover both the strep and the lyme. The doc wants to just do vanco now instead of ceftin to target the strep in her gut...that's where they think it is hiding.

 

Yes, I am beginning to think we are lucky as well. I'm just trying to figure out if we are truly lucky or just borrowing trouble.

 

I do have other children (one older and one younger: 9 and 4). Ella's eating really hasn't improved at all. She is a very picky eater. We don't make special meals for her...we are just waiting for her eating habits to mature as she grows older.

 

What is mycoplasma pneumonia? I'm not familiar with that.

 

Thank you so much! It is so helpful to "speak" to folks so knowledgeable. Other people I've talked to have no idea what I'm talking about.

[mom love]

mycoplasma p is aka walking pneumonia and it has been shown to be a factor/trigger in PITANDS (infection triggered autoimmune)among many on this forum. It is treated with a different antibiotic, usually zithromax. My guess is that the llmd did check for it. If you find stephanie2 on this forum she may be able to lend insight to the strep in the gut and using vanco. She now uses olive leaf extract for strep in her kids. You may want to research that and give it a try if you are debating using any more antibiotics.

 

Have your other children had strep issues? Have they been tested lately for strep or had their titers drawn?

[l_kelly]

My oldest had walking pnuemonia last year but not Ella. My other children haven't had any problems with strep. I actually have had some problems with it and have cryptic tonsils (tonsil stones, etc.).

 

I think we are going to go along with the llmd's plan of vanco (plus some other homeopathic remedies) to debulk the infection and then retest blood levels and eventually the gut too. After hearing what folks here have to say it seems like a prudent course. I don't want to ignore things now and regret it later on.

[colleenrn]

Have you had a throat culture or strep titers on you? My experience is that if you have cryptic tonsils, the tonsils are most likely harboring strep and you could be a carrier. It is extremely hard for a lot of antibiotics to erradicate strep in cryptic tonsils. When did you have strep last and what antibiotic were you on?

 

Based onthe strep titers and Lyme, if it were one of my children, i would most likely go with the LLMD and start vanco. OR have you tried zithromax?

 

Colleen