A question from another Forum

[Megs_Mom]

This is a question from a mom that regularly posts elsewhere. I can't put a website there, so I offered to post her details her & see what you all think:

 

I have a child(age 8) that was recently diagnosed with Chronic

late stage lyme disease.He had the sudden onset of bad thought ocd and now also

has Tourettes. We have also questioned PANDAS in the past. Well, I just had a

series of extensive bloodwork done on my son. The lab showed he has a

streptozyme titer of 1:600, and it said he was positive for strep. My son has

had no sore throat for months.It also showed a DNase -B Antibody titer of 960.

Would you think he has both Lyme and PANDAS.???? Does anyone know about these

tests?

 

He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor on top

of it all.

The last time his pediatrician did a strep test it was negative. His behavior is

no better on the antibiotics this time around.

 

Here are a few more details:

 

My son has actually only been diagnosed by one doctor with Tourettes. The other

ones he has seen are saying he has transient tics from his ocd.They are not sure

about a dx of full blown tourettes.

My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he does not feel he has PANDAS because with these antibiotics his ocd symptoms have actually worsened rather than gotten better and he has been on these now for almost a month. He has seperation anxiety, sensory issues,and has started bed wetting again a few months back. His sudden onset of bad thoughts started at age 4.11, and his tics started in

April of last year. I wouldn't mind if you posted this on another forum. I have been researching

these lab results for weeks and not getting very far.

 

Another mom posted that you cannot use Steroids for Lyme (makes it worse) and this mom posted that he had this 3x already for Poison Ivy, and it did make it worse.

 

She also posted I was told with the lyme, my son would get Herx reactions where he will get

worse before better. I didn't realize this meant his OCD and ADHD would also.

 

I don't know a thing about Lyme, excpet that it can cause OCD (but I don't know about other PANDAS like symptoms), so I am bringing this back to the wisdom of the Latitudes parents. Let me know what you think. Thanks!

[P_Mom]

What were her sons Lyme test results??? The Elisa AND the Western blot...both IGG and IGM? What other symptoms of Lyme does he have? He should have others...not just neurological/psychological.....tick bite? Rash? Where do they live?

 

It sure looks/sounds like PANDAS, A LOT!!!!!.....but, I would be very curious to know these test results.

 

He could have a strain of strep resistant to Zith....and Zith is also not the best antibiotic for Lyme...especially late stage.

 

Perhaps a high dose of Augmentin is worth a shot.

 

I have a family member diagnosed with Lyme, so, being my obsessive self, I have researched Lyme AND PANDAS to no end!

 

Oh...ANY kid can get worse on steroids...it is listed on the adverse reactions.....it does not mean your child does/does not have PANDAS and /or Lyme.

 

Kelly

[thereishope]

She said that the antibiotics did not improve the OCD this time around. So has it improved it before?

 

If steroids are out, can she try Ibruprofen?

 

 

The last time his pediatrician did a strep test it was negative. His behavior is

no better on the antibiotics this time around.[/i]

[Char]

How do they test for Lyme, a blood test?

[P_Mom]

They will first run a "screening" test...called the Elisa. If it is positive...they will run another test called the Western Blot......they will check for IGM antibodies (present in early infections) and IGG antibodies (present later on in infection.) Yes, these are blood tests.

There are several "problems" with the tests, and, unfortunately are not 100% reliable....kinda like PANDAS and the strep titers.

 

The Elisa is run first because it is most SENSITIVE....the Western Blot is run second because it is most SPECIFIC.

[momto2pandas]

I don't know where they live, but I'm guessing the East Coast. I would suggest a consult with Brian Fallon, MD, at Columbia (New York): http://asp.cumc.columbia.edu/facdb/profile...ffil=Psychiatry. He is an expert on anxiety disorder manifestations of Lyme Disease and also has some knowledge about autoimmune OCD's. He's also a super nice guy. You could probably just call him for advice (if you want to pursue it and don't feel comfortable doing it out of the blue, I could connect you). It sounds to me like his symptoms could be explained completely by the Lyme without invoking a PANDAS diagnosis, or they could co-exist. Lyme reactions aren't limited to OCD - it can cause the full spectrum of anxiety disorders, depression, even bipolar. Since most of these things, in children, are associated with separation anxiety, eneurisis (bed-wetting), etc., it would not surprise me at all if it could all be explained by the Lyme.

 

 

 

This is a question from a mom that regularly posts elsewhere. I can't put a website there, so I offered to post her details her & see what you all think:

 

I have a child(age 8) that was recently diagnosed with Chronic

late stage lyme disease.He had the sudden onset of bad thought ocd and now also

has Tourettes. We have also questioned PANDAS in the past. Well, I just had a

series of extensive bloodwork done on my son. The lab showed he has a

streptozyme titer of 1:600, and it said he was positive for strep. My son has

had no sore throat for months.It also showed a DNase -B Antibody titer of 960.

Would you think he has both Lyme and PANDAS.???? Does anyone know about these

tests?

 

He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor on top

of it all.

The last time his pediatrician did a strep test it was negative. His behavior is

no better on the antibiotics this time around.

 

Here are a few more details:

 

My son has actually only been diagnosed by one doctor with Tourettes. The other

ones he has seen are saying he has transient tics from his ocd.They are not sure

about a dx of full blown tourettes.

My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he does not feel he has PANDAS because with these antibiotics his ocd symptoms have actually worsened rather than gotten better and he has been on these now for almost a month. He has seperation anxiety, sensory issues,and has started bed wetting again a few months back. His sudden onset of bad thoughts started at age 4.11, and his tics started in

April of last year. I wouldn't mind if you posted this on another forum. I have been researching

these lab results for weeks and not getting very far.

 

Another mom posted that you cannot use Steroids for Lyme (makes it worse) and this mom posted that he had this 3x already for Poison Ivy, and it did make it worse.

 

She also posted I was told with the lyme, my son would get Herx reactions where he will get

worse before better. I didn't realize this meant his OCD and ADHD would also.

 

I don't know a thing about Lyme, excpet that it can cause OCD (but I don't know about other PANDAS like symptoms), so I am bringing this back to the wisdom of the Latitudes parents. Let me know what you think. Thanks!

[Megs_Mom]

Thank you all so much - I sent these notes back to her. I'll let you know if I hear more.

 

So, I am curious - since you all seem knowledgeable about this - we tested for Lyme, Lupus, Thyroid & PANDAS before finally deciding on PANDAS. I am very comfortable that we ruled out Thyroid & Lupus for now. For Lyme, since steroids are counterindicated, and the testing is vague - how did you all decide - Lyme or PANDAS? We are in tic country in NC, so we could not rule out - no obvious signs, but we pull them off everyone all the time (we usually think they have not bitten, except poor dog). Our rheumo did a test, but the line item just says "Lyme" and then negative. So we ruled that out ourselves. Is that too preliminary? Not sure that we'd go back that direction, but I am very curious as to your thoughts on this, since it seems so similar to PANDAS, but with a different treatment.

[mama2alex]

The first doctor I called (beside our pediatrician who was treating him for pneumonia at the time) when our son had sudden onset OCD was our DAN doctor. He was immediately convinced it was Lyme and ran an initial test, which came up negative. We live in California, son's never had a tick on him, or a bullseye rash. For us, pursuing PANDAS just made more sense, especially since our Cunningham test came back in the PANDAS range, and he had elevated Anti-DNase B, and Zithromax and Prednisone helped some. If PANDAS treatments are not effective, we may pursue the Lyme diagnosis more seriously at some point.

 

It is definitely confusing!

 

Thank you all so much - I sent these notes back to her. I'll let you know if I hear more.

 

So, I am curious - since you all seem knowledgeable about this - we tested for Lyme, Lupus, Thyroid & PANDAS before finally deciding on PANDAS. I am very comfortable that we ruled out Thyroid & Lupus for now. For Lyme, since steroids are counterindicated, and the testing is vague - how did you all decide - Lyme or PANDAS? We are in tic country in NC, so we could not rule out - no obvious signs, but we pull them off everyone all the time (we usually think they have not bitten, except poor dog). Our rheumo did a test, but the line item just says "Lyme" and then negative. So we ruled that out ourselves. Is that too preliminary? Not sure that we'd go back that direction, but I am very curious as to your thoughts on this, since it seems so similar to PANDAS, but with a different treatment.

[peglem]

Lyme has never been suggested or tested for us, although, I have privately wondered about it.

[Ellen]

Dr. Fallon was a big help to us when were trying to figure out whether our son had lyme or PANDAS or both. Before seeing him we had seen a Lyme Literate MD who felt that he had lyme and probably not PANDAS, but the test results for lyme were equivocal and the lyme treatments were not working, and all of the other doctors we had seen including Dr. Leckman felt it was much more likely to be PANDAS than lyme. Leckman suggested seeing Dr. Fallon, whom he respects very much, to get his opinion. Dr. Fallon did some blood work including a C6 Elisa, which he considers to be a pretty good lyme test, and that turned out to be negative for lyme. Based on my son's clinical history and slightly elevated ASO, he concluded that it was much more likely to be PANDAS than lyme. I agree that Fallon is a very nice doctor, and he would be a good person to consult. After seeing him, I was relieved that we could finally put the lyme theory to rest and treat this as PANDAS.

 

Ellen

 

I don't know where they live, but I'm guessing the East Coast. I would suggest a consult with Brian Fallon, MD, at Columbia (New York): http://asp.cumc.columbia.edu/facdb/profile...ffil=Psychiatry. He is an expert on anxiety disorder manifestations of Lyme Disease and also has some knowledge about autoimmune OCD's. He's also a super nice guy. You could probably just call him for advice (if you want to pursue it and don't feel comfortable doing it out of the blue, I could connect you). It sounds to me like his symptoms could be explained completely by the Lyme without invoking a PANDAS diagnosis, or they could co-exist. Lyme reactions aren't limited to OCD - it can cause the full spectrum of anxiety disorders, depression, even bipolar. Since most of these things, in children, are associated with separation anxiety, eneurisis (bed-wetting), etc., it would not surprise me at all if it could all be explained by the Lyme.

 

 

 

This is a question from a mom that regularly posts elsewhere. I can't put a website there, so I offered to post her details her & see what you all think:

 

I have a child(age 8) that was recently diagnosed with Chronic

late stage lyme disease.He had the sudden onset of bad thought ocd and now also

has Tourettes. We have also questioned PANDAS in the past. Well, I just had a

series of extensive bloodwork done on my son. The lab showed he has a

streptozyme titer of 1:600, and it said he was positive for strep. My son has

had no sore throat for months.It also showed a DNase -B Antibody titer of 960.

Would you think he has both Lyme and PANDAS.???? Does anyone know about these

tests?

 

He sees a LLMD and his pediatrician, but I cannot afford a PANDAS doctor on top

of it all.

The last time his pediatrician did a strep test it was negative. His behavior is

no better on the antibiotics this time around.

 

Here are a few more details:

 

My son has actually only been diagnosed by one doctor with Tourettes. The other

ones he has seen are saying he has transient tics from his ocd.They are not sure

about a dx of full blown tourettes.

My son is on Zithromax 500mg a day and Rifampin 300mg a day.The LLMD says he does not feel he has PANDAS because with these antibiotics his ocd symptoms have actually worsened rather than gotten better and he has been on these now for almost a month. He has seperation anxiety, sensory issues,and has started bed wetting again a few months back. His sudden onset of bad thoughts started at age 4.11, and his tics started in

April of last year. I wouldn't mind if you posted this on another forum. I have been researching

these lab results for weeks and not getting very far.

 

Another mom posted that you cannot use Steroids for Lyme (makes it worse) and this mom posted that he had this 3x already for Poison Ivy, and it did make it worse.

 

She also posted I was told with the lyme, my son would get Herx reactions where he will get

worse before better. I didn't realize this meant his OCD and ADHD would also.

 

I don't know a thing about Lyme, excpet that it can cause OCD (but I don't know about other PANDAS like symptoms), so I am bringing this back to the wisdom of the Latitudes parents. Let me know what you think. Thanks!

[thereishope]

With us, sudden onset of behaviors came first, then we did a strep test because the ped had read about PANDAS once. The culture was +. So, I don't think they saw a reason to ever test for Lyme. For us (I guess you can say) the connection was very much there. He also began to see slight improvements with antibiotics. We live in OH.

[EAMom]

Is Lyme dz more likely to have fatigue/arthritis/joint pain than PANDAS? Does this boy have any of these symptoms?

[P_Mom]

The fact that this boy has positive strep titers is very indicative of a strep problem. The strep titers (in this case) are a fool proof test....if elevated...you know your child had strep. Of course, if negative, you can't be sure.

 

So, this child definitely has a strep problem, elevated ASO and AntiDNAase titers....no typical symptoms of strep.................I still wonder what his Lyme test results are and what are his other symptoms.

 

I don't believe Lyme would produce a sudden onset of things.....the Lyme bacteria grow very slowly and a person will manifest with a variety of symptoms before the late stage neurological manifestations take place.....I don't know of sudden onset of these things with Lyme.

[matis_mom]

We found our current doctor through friends of friends, and we have been emailing back and forth to check on each other. Her daughter's diagnosis was clearly Lymes/Babesiosis, with OCD and other severe behavioral problems. She had seen great improvement in the last year, but now was going down hill. My friend mentioned another child in the family having GI issues and RA, I asked her if they had ever checked for strep. Both our kids experienced flare-ups a couple of weeks ago, and then again over the weekend. Without knowing it, we both took our younger daughters (not the PANDAS/LYMES kids) to the dr. today. When I got back I had an email from her saying her daughter tested positive for strep! And so did mine! We have no contact with each other (except through e-mail), but we do live in the same town and strep is going around like crazy.

 

My point in all of this is even if you have a clear diagnosis for Lymes, PANDAS could also be contributing. I would suggest this mom gets other family members tested. Her son's titers are definitely VERY high (they are actually higher than my PANDAS ds!). If throat comes back negative, check the gut.

 

Even though we have a clear PANDAS diagnosis and the Western Blot came back completely negative, our doctor is still checking every now and then to see if anything comes up. Her theory is that the system is so overwhelmed by strep, it's not dealing with the Lymes at this point, but once we get that under control, other things may surface. So this girl could be experiencing the other side of the coin... now they are getting the upper hand on the Lymes, and strep is rearing it's ugly head....

 

Also, Lymes often comes along with other co-infectious diseases. Babesiosis is one of those (I read somewhere up to 20% of people infected with Lymes in the North East have Babesiosis as well) It is known to cause sudden onset OCD, even in adults. I wonder if they have tested/are treating for that as well.

 

Isabel

[P_Mom]

It is very interesting to me that the child with a Lyme diagnosis had another child in the family with RA. This is one of the conditions that causes a false positive Lyme test. There are several reports in literature of children testing positive for Lyme disease, then, later to be found to have RA. The antibodies cross-react creating a false positive Lyme result. Other conditions that cause a false positive Lyme result are...Epstein Barr virus (mono-virus), syphillis (clearly not what is the problem), and several rheumatic conditions (RA, Lupus, and several other connective tissue diseases). It is just interesting....now this child is showing PANDAS symptoms.......??? What was it about this childs diagnosis of Lyme/Babesiosis that was absolute? What was this childs treatment plan and what happened/changed that they started to go down hill?

 

Was there a visually seen tick, bulls eye rash that was then followed by flu-like symptoms? Other than those few things....there is no way to get a 100% clear Lyme diagnosis....the tests are just not reliable or accurate enough. Lyme is called "The Great Imitator" because it resembles and gets confused with so many other conditions.

 

If the child is seeing a LLMD, they should have checked for co-infections automatically. Doxycycline is given first many times because it wipes out these co-infections (babesiosis, etc) fairly quickly.

 

Just something to think about......