PANS Lyme with only neurological symptoms?

[FLmom]

I have a 13 year old son who I strongly believe has PANS or Pandas. His major onset was last August following a family vacation during which he had a sore throat most of the trip. The day after we arrived home he began having anxiety attacks and major OCD. The OCD has only exacerbated over the past year. Last fall, recognizing that this must be Pandas, I took him to a practice that was recommended by several with lyme. The PA ran lots of bloodwork on my son. His Anti-Strep O titer was only 10 (with a <150 as normal). But one band of lyme (41) came back reactive. He also had an elevated C4A. The PA concluded that strep wasn't an issue, but that the lyme was causing his OCD and prescribed amoxicillin. He took that for 6 weeks with no improvement.

 

Last month I scheduled another appointment to ask if he could go on stronger antibiotics. The PA said that until he has passed through puberty (around 16) there was nothing stronger he could give him. ??? So I was left with just to hang on until then.

 

A few weeks ago I started re researching Pandas since I couldn't get out of my mind his sudden onset following a sore throat. It was then that I came across all the other symptoms, besides OCD, that goes along with Pandas. My son has about all of them, other than tics. His decline in math has been a huge issue that has baffled me. He is working about 2 years below his class, and is still not doing well. He told me last week he can't add or subtract anymore. He also has had major sound sensitivities since he was about 8. He can't tolerate the sounds of crayons coloring or pencils without freaking out.

 

The following Monday morning I called Dr. Murphy's office, but was told she had no openings until April. Later that week I called Dr. K's office in Chicago and I have a phone consultation set up for Monday.

 

So that I have some more knowledge before I talk with him, I am wondering if others has seen these symptoms with just the one Lyme band reactive. My son has no physical symptoms of lyme. We live in Florida, which is not a high risk place, but he did spend a week the two previous summers in NY and VT. We have no recollection of any tic bite.

 

His Vit D was also low and he had low Absolute Lymphocytes. He was positive for a past infection of Herpes 6, which I was told means he had Roseola at one point. And he was positive for two copies of the MTHFR mutation.

 

At first I was so excited to attribute this to Pandas--I thought get him the IvIg and get my son back. But after reading these forums I am realizing it is not so easy.

 

If anyone has had any similar bloodwork, I'd love to hear their experiences.

 

Ginger

[nicklemama]

The PA you saw does not appear to me to have much knowledge of Lyme or of antibiotics, in general. HHV6 can trigger PANS. HHV6 is known to have molecular mimicry with strep. Keep your appointment with Dr Murphy. Have you visited pandasnetwork to see what other doctors may be in your area? I'd go elsewhere. You may have to travel. Dr K is not a Lyme expert. He is a PANDAS expert. See what he has to say and what he recommends. Consider traveling. I think there may be a few doctors to consult with in Georgia.

 

My son has never had a known tick bite. We do not live in a Lyme endemic area or so they say. My son has two tick borne infections that he is being treated for. He is not quite 10 and he's been on augmentin and biaxin for 8 months. He's doing really well. He is also a patient of Dr K and had IVIG twice in Chicago.

[3bmom]

What were your Herpes 6 titers? Our Dr is older and was taught you treat any titers over 4 x higher than normal. We take Valcyclovir at 1g/3x/day. He was 110 lbs and 11 yrs old. In two days we had so much improvement. If the ER had done blood work it would of kept him out of the hospital. He went from almost 16x higher than normal to normal in less than 6 months. The behavior changes for us were dramatic.

 

My college age son who was an easy A student dropped out because he was so tired and couldn't concentrate. His Dr. told me the titers don't mean anything and he is just depressed and gave him an anti- depressant at 20 yr. old. I had blood work drawn and his herpes 6 titers are 20x higher then normal! He also now has scoliosis after being an amazing athlete in high school. Just found out from a massage therapist that scoliosis can be from a virus.... Hmmm

 

 

If you log on to Radio PANDAS this weeks interview is with DRs from the conference who will give you their views on IVIG and treatments.

 

I also feel if you remove the layers of inflammation before puberty you will have an easier but not impossible chance of healing because your immune system is maturing then. I am just a mom but that is my goal for my DS.

[FLmom]

This blood was drawn a year ago and his Herpes6 IGG was 1:160 with a reference of 1:10. His Herpes6 IGM was <1:20 which was normal.

 

Does anyone know if Dr. K is familiar with this particular virus? I don't mind traveling if that is what it takes.

@3bmom--is your older son being treated and how is it going for him?

[rowingmom]

DD had a very low reaction on the WB for lyme, but did have positive bartonella titers on the Igenex PCR bart test. Bartonella is one of the common coinfections found along with lyme. Others include babesia, ehrlichia, RMSF and mycoplasma.

 

 

DD's PANS reactions, which included Tourette's-like motor/vocal ticcing, some OCD and loss of math ability and spatial skills, were caused by bartonella (see my signature for more comprehensive list). Her neurological PANS symptoms showed up 2 years before the bartonella pain symptoms started.

She also had low vit D. Lymph counts were also low, but not out of range for normal.

 

Glad to hear you will be seeing a specialist.

[sf_mom]

I am also concerned that your son's elevated C4As could indicate he has had mold exposure and inability to detox it. I would have an LLMD run a full Shoemaker Panel as those with mold issues often do not make much headway on antibiotics. If your LLMD has not heard of the Shoemaker Panel, I would look for another Dr. that does.

 

Is there a possibility he was bit before the age of 8, sound sensitivity is a symptom and indication he has been dealing with this for a while.

[FLmom]

He could have been bit--he was very outdoorsy. We just aren't in an area that is supposed to have lyme. But I've been told that doesn't matter.

[pr40]

i may not be understanding this well, one bend does not indicate lyme. I would look elsewhere as well. try to indetify the cause of infection and may want to approach treatment as an autoimmune conditon while you search for the cause.

[FLmom]

What would be 'approaching from an autoimmune standpoint'? Dr. K also said one band did not indicate lyme, but the practice that did the work up on my son last year are known for treating lyme(this is not my son's regular ped who refused to give the trial augmentin). And the PA felt that it was enough...so I'm not sure. I will ask about the Shoemaker Panel.

[rowingmom]

Band 41 is cross-reactive for any bacteria possessing a flagella, so does not necessarily prove the presence of lyme.

 

Please have them test for coinfections through Igenex before you totally give up on lyme and co.