High Myco titres ..... What does this mean?

[Teri]

Hello folks,

 

Dd 6 has really been struggling the past 8 weeks or so. We have been running labs every 4-6 weeks. She has PANDAS/LYME/Bartonella and takes : Azithromycin, Cefnidir, Rifampin, and generic Lamisil daily along with Florastor. Over the past 8 weeks we have seen tics return, hyperactivity return in the evenings, OCD has returned. Over the past week she has begun to not eat and is able to tell us that her Pandas is bothering her. She says "her jumpies are back (tics) and her brain is telling her "don't eat".

She is also now tapping herself and is just so restless - cannot be still. I would say this almost the worst it has been since her initial onset.

 

Her labs just came back and her Myco Igg has gone from 138 to 598. AntiDnase B strep is elevated -89 and ASO titres are finally normal - 96.6. Candida #s are all normal but Vitamin D levels are low.

 

My ASO and Myco titres came up high. So I am just starting 30 days of Keflex. We thought she was flaring because of my strep numbers or perhaps a big yeast issue! Neither of these seem to be the issue.

 

My question is how could her Myco Igg number elevat so much??? What does low Vitamin D levels indicate? I have not been giving Vitamins because frankly it is all we can do to get her to take her meds!

 

We don't see Dr. B until June 12th and things seem to be going downhill fast? HELP! Thought getting on Abx for myself would help things but now I don't know!?

 

So frustrated ..... We've been at this for 20 months now and thought we would see more forward progress. Seems like we are just trying to hold back the tide.

 

Any feedback would be appreciated!

 

Teri

[pr40]

I hope someone else will respond to you soon. I can say only a few things. IGG is a measure of body's reaction to Myco. So, the levels tell you what happened in the past. We had low Vit D and it is really hard to get it to go up. I suspect that a roundabout way of dealing with methylation is necessary.

your dd is already taking so many things and I am reluctant to suggest even more. Perhaps you may want to start not doing certain things, like going gluten or dairy free -- depending of what kind of sensitivities run in your family.

good luck

[Teri]

Thx for your reply pr40! I realize that Igg means past infection but I am wondering why It would jump so drastically since last month - over 400+. Not sure about methylation .... As far as sensitivities go - Dd is adopted but she already has food allergies (tree nut , peanut among other things). Not sure what is going on but waiting until 6/12 is going to be tough!

[pr40]

i guess, with myco question will be if they jump again.

In our experience, drs are helpful if you know what can be done next. Are you hoping for IVIG?

In my understanding, pANDAS/PANS is reflects a disturbance of the entire system. If she has food sensitivities, you can suspect others. gluten, eggs, dairy are the usual ones.

our kids responsed really well to methylcobalamin b12 (1000 mcg) and did so right away. I mean within hours. you may want to try that.

[mommybee]

Hi Terri-

 

Dr. B is wonderful. He'll get to the bottom of it, if anyone can. I'm not sure what you mean by anti dnase being elevated -89. Normal is under 376 if the test was run by quest or Mayo. Was the recent blood work run through the same lab as before? Sometimes the values from lab to lab can differ. Has your daughter been been sick recently? Typically strep and or myco p titers rise after an acute illness.

 

I'm also a little confused about the PANDAS/Lyme/Bartonella dx because Azithromycin and Cefnidir don't provide the same coverage as Augmentin. Dr. J and Dr. B usually favor the combination of Azrithromycin and Bactrim for Bartonella. Is your daughter allergic to penicillin or sulfa drugs?

 

Low vitamin D levels are to be expected in kids who live in New England. It's been a snowy winter. Kids who test positive for Lyme almost always have low D. This is easy to supplement. Just put a few drops of liquid vitamin D into her milk or juice and she'll drink it right down ( http://www.amazon.com/Source-Naturals-Vitamin-Liquid-Fluid/dp/B002R3OBDU/ref=sr_1_4?ie=UTF8&qid=1369539877&sr=8-4&keywords=liquid+vitamin+d ). Dr. Jones typically

recommends 2000 ius or one drop.

 

Why are you starting Keflex? Azrithromycin woudl be protocol against mycoplasma pneumoniae and is effective against strep. Keflex isn't typically used to treat either.

 

My heart goes out to you and your daughter and I'd like to help, I just am having difficulty making sense the treatment plan. I am familiar with your doctors and have been treated for high strep and Myco P titers too.

[Teri]

Thx for your reply Mommybee!

 

Dr.B is great we have been seeing him since March 2012. My Dd's blood work was run down here in PA - we live in NJ but our closest Labcorp is in PA. We have run her labs down here because it is easier as she is having them done every 4-6 weeks so Dr.B can keep an eye on her liver function. She has not been sick lately - some recent asthma & allergy flares but not sick. Her strep titres are still slowly coming down from her initial onset in Sept. of 2011. In April her myco Igg was slightly elevated but it has jumped 400 + points in the last 5 weeks.?

 

As for the treatment plan Dd is allergic to amoxicillin and Bactrim. She was on a combo of Azithromycin & Cipro for about 7 months. Dr. B switched the Cipro to Cefnidir and Dr.J added Rifampin in March.

 

With regards to my treatment, I tested positive to Strep (800) and my Myco was also above normal. I also tested positive a year ago for strep (400) and took 21 days of Amoxicillin. PA at Dr. B's office said that I needed something stronger than Amoxicillin and to take it for longer - 30 days. They mail me the bloodwork results and then I have to take it my PCP and convince them to treat. My PCP selected Keflex because it is stronger than Amoxicillin.

 

Dd has never had her Vit. D levels checked so that is new for me. We live in central NJ and have not experienced the snowy weather this winter. I think Dd only donned her snow suit once this year . Glad to hear the supplement is easy to get into her! I will check that out. I did wonder if The low Vit. D level is related to Lyme.?

 

What have you been prescribed for high titres? Last year I couldn't tolerate Augmenting which is why the Dr. switched to Amoxicillin.

 

Thanks again for your feed back and good thoughts!