12 yr old son just tested positive, new to this

Hello. My son has been having joint and muscle pains.. jaw pains.. chronic ear ringing (mainly at night).. night sweats and bladder pains and yet no one could explain why. We tried allergy meds and all but with no help. He also has Tourette Syndrome and ocd as well as sensory processing disorders. Our doctor sent him for blood work and when we came in to see her, she said our son tested positive for Lyme Disease. He starts Zythromax today for 6 weeks. Here is what his labs look like - can someone maybe jump in and let me know if this sounds like Lyme? Not that I don't trust my doctor bc I do but I also know the test are tricky.

LYME SCR

LYME IgG/IgM AB 0.91 (equivocal)

LYME AB IgM QT .86 (High)

LYME IgG P41 AB Present (positive)

LYME IgM P23 Present (positive)

The others on the LYME IgG and IgM were absent

The tourettes and ocd could also be Bartonealla, coinfection. My son was neg. in blood work last June, but in Feb. clinically diag. with it in addition to lyme. He was 11 when infected, had a knee swell and at 14/15 became all psych. symptoms, rage and all incl. ocd, odd, ticks, and they finally diag. him as bipolar. I figured it out, no one would listen. Finally saw psychiatrist/lyme specialist this time last year and a lyme dr. in June.

My email is enabled if you have any questions or want more info... I have many posts up on this site as well under things like teen or psych issues, etc.

Def. find a lyme dr. The protocol they are telling you will not be enough and it can and may recur.

It sounds like your son is having a PANS reaction to lyme or perhaps one or more coinfections. Did your doctor test for the common ones - bartonella, babesia, mycoplasma, anaplasma, ehrlichia?

http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispans/

Our daughter's PANS was caused by bartonella. As she healed from the infection, the brain inflammation which was responsible for the PANS symptoms resolved, and now she is symptom free. Her original infection was likely congenital, and exacerbated by vaccinations (which can impact immune response) and the bite in Aug 2008.

Here is her timeline:

Born 2001 with light/sound/touch sensitivity. Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination.

2004 - Dx ADHD, sensory processing disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia.

2008 - MMR booster and insect bite (bruise-like rash) - motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections.

2010 - Dx ADHD, Tourettes, Aspergers, motor delay, probable PANDAS.

Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremeties, chills and hot flashes, extreme fatigue, nightly fever.

June 2011 - Igenex PCR positive bartonella, Negative ELISA, Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal, homeopathic treatment with LLMD.

Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16.

April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, Terry Wahls/PerfectHealthDiet gf/cf/sf diet. Minimizing EMF exposure.

Sept 2013 - CD57 45.

Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols.

Nov 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment.

Dec 2013 - ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student.

Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture.

Sept 2014 to Present - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture and diatomaceous earth. 99.9% improvement with no relapsing.

The ACN PANS/PANDAS/Lyme forum might be a good place to look:

http://latitudes.org/forums/index.php?showforum=17

I post there as rowingmom as well.

Just curious if you have been tested for lyme and coinfections, with your diagnosis of lupus?

If I am correct, it seems like most kids on the PANS/PANDAS forum with ticcing eventually end up testing positive for bartonella. Unfortunately Zithromax alone may not reduce his bartonella load enough to allow his immune system to take over. LLMD's are more knowledgable about arthropod-borne disease and will treat until the infection clears, usually with a rifampin combination. The ISDA will only treat for a few weeks and relapse may result.

Remember, bartonella, lyme and babesia are all very immune suppressive. It is this suppression, I feel, that allows other infections (strep etc.) free reign. It is also the cause for many negative antibody test results. As K"s symptoms improved (and I assume her immune response improved as well), her Lyme WB actually showed more bands. The LLMD said this was because her immune system was responding in a more normal fashion.

No mainstream medical doctor knows what causes TS. During the years K was being treated, I associated an increase in motor/vocal ticcing with increased toxin load (ie, endotoxins released by lysed bacteria). It was very obvious that killing bartonella released substances that caused her neurological setbacks. Diminished motor planning, executive function and increased ticcing and inflammation.

Methylation defects are very likely during chronic illness, whether or not they are genetic, and can be compensated for by using methylated versions of B vitamins. A propensity for decreased ability to detoxify may be one cause for familial TS.