A question from another Forum

[Megs_Mom]

Hi all - I just got her email address, so I sent her this thread. Hopefully, she will come post here, as you all have great ideas. I did ask, and the child has responded well to anti-biotics in the past, but they are not changing the behavioral patterns this time. Here is some additional info:

 

I forgot to mention he had a positive ELISA test from his pediatrician(local lab), but when sent to lab for further testing the western blot showed 4 bands instead of 5, so they said negative by the CDC.

We took my son to DR. Charles Ray Jones, who redid the western blot, IGG and IGM through IGENEX lab and it came out positive for past and present exposure.

 

My son used to seem okay when he had antibiotics previously( 10 day supply) but this time around he is wicked hyper!!!!!!! This may explain his "alphabet soup " diagnosis also. He has been diagnosed with bipolar also , by certain docs. but his main psychiatric issues , right now, would be , his anxiety, hyperness, and bad thoughts.They change constantly, and he never seems to have a good response to any psychiatric meds.

My son has always had leg pains also(as long as I can remember) and he would get pumping headaches( that is what he calls them) unexplained fevers, and he has been bitten by ticks at least 5-6 times each season( that we have pulled off of him that have been imbedded) lots of sporatic rashes,eczema sinc he was an infant, whiny, always sick looking and tired.Dark circles under his eyes, etc, etc

[thereishope]

Since antibiotics have worked in the past to stabilize him, I think she should explore PANDAS. Perhaps he does have PANDAS and lyme. And the lyme is aggravating his PANDAS.

[Worried_Dad]

Our DAN doc originally suspected Lyme for our son, but the Lyme blood test was indeterminate. Then the ASO titer came back off the scale and he diagnosed ARF / SC (and later changed that to PANDAS). From what I read back in the beginning, there are a lot of common symptoms between Lyme and SC / PANDAS and they are frequently misdiagnosed one for the other.

[momto2pandas]

I wonder, also, has the antibiotic regime remained completely stable this whole time? Someone else mentioned that doxycycline is frequently given for Lyme. I am a grown-up PANDAS (does that make me an "ANDAS"?) and I just wanted to mention that, in my younger days, I had autoimmune neuropsychiatric reactions to both doxycycline and minocycline. Actually, I got a whole lupus-like sydrome with rashes, joint pains, etc. also, but the neuropsych sx were most prominent and pretty much looked exactly like my infection-triggered symptoms. So, if he has done well on antibiotics before but has now switched the antibiotic he's taken or tried to at some point - it is possible that he may be reacting to the antibiotic itself at this point.

 

Probably not the case, but it took several months to figure it out when my antibiotics actually starting causing the problems rather than fixing them, so I thought I would pass this on as something to be aware of....

 

 

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!

[matis_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......

I don't have all the particulars of the initial diagnosis, but I know for sure she tested positive for Babesia. Her mom was telling me about flare ups, and my first thought was, is there someone sick in the house? And sure enough, another child tested+ for strep. Fortunately our doctor is very open-minded and tries to follow the symptoms rather than get stuck on a diagnosis. They were having a phone consult today, I haven't heard how it went...

 

Isabel

[peglem]

I am a grown-up PANDAS (does that make me an "ANDAS"?)

HeeHee! I think it makes you an AANDAS!