Thoughts on Lyme and OCD

[Debbie1]

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[smartyjones]

my son had the western blot, never the ELISA. i think b/c we live in md and i asked for it and the dr. was surprised that we hadn't done that when we did his titers so he went right for the western blot.

 

i don't really think he has lyme, i think it's more classic pandas with confirmation of high titers and + throat culture. however, i have a knowledgable friend on lyme who is planting seeds in my head and i don't want to be ignorant. i do think it is true that if you have lyme, your system is open to other infections.

 

i wonder how much i can trust a neg test.

[P_Mom]

Debbie...let me guess...positive on the IGG portion of the Western blot for band 41.....positive on the IGM for 41 and 23??? Am I right? Those are the most common bands...41 is not specific to Lyme...many people yield a reactive to band 41....41 represents the "flagella"..tail like whip...of bacteria...NOT Lyme specific. Band 23 is more Lyme specific but, not the most specific reactive band you should have. Reactive on band 23 on IGM can be cross reactive and not Lyme specific. Having specific IGG bands are much more telling.

 

But, you are right.....the treatment would be antibiotics (specific ones...Zith is one)..so, if she would have happened to have been exposed, you are covered.

 

Being on Proph. amox in the summer, if this is when you suspect the infection to have occured, would have prevented Lyme pretty much almost guaranteed. Lyme literate docs say Lyme is the easiest bacteria to eradicate IF CAUGHT EARLY!! The first line of treatment for an early Lyme infection is Amox.....I think for 21 days...maybe even 10...can't remember.

 

 

Smartyjones....

If he had no reactive bands on the western blot(and he was off antibiotics)...and no ticks, rashes, etc....I would be pretty confident he does not have Lyme.

[Charlotte Mom]

Dr. B. is treating both. We see Dr. T. as well, but have not seen him since the recent lyme result - we have a follow up with him next week.

 

who is Dr B? I will be curious to see what Dr T says about Lyme. Did you see his write up that he posted for us? He talks about Lyme and PANDs. Buster did a chart on it. There is something to this Lyme and PANDs for the kids who are not slam dunks to 'fix" I think... whether it's causal or a co-morbidity...

[coco]

who is Dr B?

 

 

Dr. Bouboulis, Immunologist in Darien/Stamford CT. Treats many pandas kids, has consulted with Dr. K, Dr. T, and Dr. Cunningham, recommended by Dr. James Leckman at Yale.

[lyme_mom]

Charlotte Mom,

 

My answer is sort of long... but I think relevant to your question. My son has TS and no OCD symptoms at this time.

 

My 7 yo son is currently being treated by Dr. Charles Ray Jones a Lyme Literate MD in New Haven, CT. He is amazing! My son, Chris, started taking 250 mg of Azith in the am and 150 mg of Rifampin 2x a day back in August 2009 to treat Lyme disease. Long story short, we stopped the Rifampin as it makes Chris' motor tics a lot worse (noticeable 20 to 30 minutes after taking it). We stopped the azith for a month as well. Chris has restarted the azith (we're on day 5) and he's tic free. It's early to say if it's the azith as this could be the natural waxing and waning of TS. I do not know if the Rifampin/Azith is protocol for Lyme.

 

After reading "Saving Sammy, the Boy Who Caught OCD," I went through Chris' medical history. Chris had rapid onset motor tics begin in 10/2007. Five months later he developed a strange rash that our MD (not Charles Ray Jones) didn't diagnose. I'm wondering if the rash was scarlet fever or rheumatic fever. Six months after onset of symptoms, Chris was treated with augmentin for a strep infection based on ASO. While on augmentin he was tic-free. I should mention that we get strep a lot (I'm currently taking abx for it) and each time on augmentin, Chris has been tic-free.

 

I wonder if my son has Lyme and strep. We're going to see a neurologist on 2/9 who understands and treats PANDAS.

 

I think I'll know in a week or two whether or not the Lyme treatment (now only azith 250 mg 1x per day), is actually stopping the motor/vocal tics.

 

Hope this convoluted response helps...

 

-sarah

 

Dr. Jones is one of our lyme doctors and he is pretty amazing. Its great you are going to see him. He probably gave your son Rifampin with the Azithromycin b/c he thought he might have Bartonella, a tick borne illness (aka cat scratch disease) that often accompanies lyme disease which can cause OCD symptoms. Rifampin is used to treat Bartonella. Dr. Jones thought my son had Bartonella but over the 18 months he has been treated for lyme he has tested negative for Bartonella over four times. Last week he finally got a rash that looked like scratches from a cat and it was the first proof that he has Bartonella. The doctors interpret this as an effect of the die off of Bartonella. My son doesn't have PANDAS but I asked Dr. Jones about my cousin's child who has OCD/PANDAS and whether lyme could cause OCD. He said Bartonella can cause OCD but not lyme. Nobody knows what lyme and the other tick illnesses look like in children like Dr. Jones. You are in excellent hands with him.

[lyme_mom]

p.mom - you seem rather literate about lyme. would you share what you know/think about the lyme tests.

 

my son had a lyme test - the results show igG and igM - all nonreactive. he was 12 days off keflex at the time of the test.

 

my understanding was the trouble with the test was that people show some reaction to a few bands but are considered to not be having a problem with lyme when they really are.

 

do you know if you can be sure of ruling out lyme with the blood tests?

 

thanks.

 

There are no blood tests which can "rule out" Lyme Disease because it is a clinical diagnosis. The tests only test for lyme antibodies and not everyone produces antibodies to lyme, especially since lyme can disable one's immune system. Also if you test too early you will get a false negative. The ELISA test is a screening test designed for reporting, not diagnosis. It is wrong 40 percent of the time. The lyme experts say that there are very few false positive lyme results but many false negatives. The best tests lyme tests are Western blot tests done by Igenex Labs in California and Clongen in Gaithersburg, MD. They are not covered by insurance and run approx 200 dollars for both IGG and IGM. These two labs test for bands 31 and 34, which are highly specific to lyme and which the insurance-covered tests do not test for. Makes no sense to not test for these antibodies but it has something to do with the old failed lyme vaccine that was based on band 31. Any child with lyme-specific antibodies (not necessarily a positive test) and lyme symptoms might benefit from a trial of antibiotics to see if it helps the symptoms or makes them worse. A lyme literate doctor would know. During the lyme die-off toxins are released that exacerbate symptoms temporarily. If you suspect lyme and want to rule it out you need to see an ilads-trained doctor (ilads.org) who treats this everyday. There are tests for other tick illnesses related to lyme like BArtonella and Babesia too and most docs have no idea how to spot it. The antibiotics should not affect the results of the lyme test unless your child has been on them for a really long time.