Lyme

[sf_mom]

In our case they used a cyst busting medication 'Alinia' and Azithromycin to provoke Lyme die-off. We collected urine on day 3, 5, 7 and then they checked for the die-off DNA. I think the test itself was only $125.00 but you need a Dr. that understands how to provoke the die-off. I know for another little boy Omnicef, Azithromycin, Alinia was used.

 

Dr. Ann Corson talked about it a little in her discussion today. She stated Lyme loves the bladder and its easy to provoke.... same thing our Dr. told us about the testing.

 

-Wendy

Edited October 15, 2010 by SF Mom

[kimw]

The one psychiatric distinction that I can think of is just that I hear of more frequent & more intense cognitive fog/impairment in Lyme than in P.A.N.D.A.S., which isn't even really a distinction, haha. I think that disorders with mechanisms as broad & uninhibited as "bacteria inhabiting the nervous system" (Neuroborreliosis) & "antibodies attacking the brain" (P.A.N.D.A.S.) are bound to end up with the same "catch-all" symptoms. As has been said before, the physical symptoms are the main differentiator, as the only physical I symptom I really hear P.A.N.D.A.S. kids dealing with are the gastrointestinal issues every now & then.

 

Unfortunately, Dr. E, it's even more complicated than that to distinguish Lyme from PANDAS. Our son's symptoms started with physical symptoms often associated with Lyme: joint pain that moved from joint to joint (migratory polyarthritis), muscle weakness, difficulty walking. Six weeks later the "seizure-like episodes" of chorea began. I believe these are common physical Lyme symptoms... but they're also classic symptoms of acute rheumatic fever with Sydenham's chorea, post-strep autoimmune disorders that are considered part of the same "spectrum" as PANDAS by many experts.

 

So even the physical symptoms overlap considerably. No wonder there's so much diagnostic confusion... and why us paranoid parents don't get much sleep!

[kimw]

Sorry I just saw this & I realize now why I'm confused. I posted a topic post-strep syndrome & was trying to get feedback about our experience with my ds. We thought he had PANDAS but then he was admitted into the hospital with rheumatic fever but then discharged as post-strep syndrome. Then we thought it was Sydenhams chorea that turned into rheumatic fever but his chorea wasn't typical of Sydenhams so again we thought PANDAS. Someone mentioned lymes & test came back normal. But we didn't do the western blot So now my ds was tested for that today. I'm at my end wits trying to figure all of this out & reading all of this makes sense why I'm disheartened bc it can be anything & it's difficult to pin point my ds real issue.

[T_Mom]

KimW -- We can all understand your discouragement and how that feels, certainly, and I am sorry. (Have felt that acutely myself in the last few weeks--)

 

We do the best we can with what we know NOW. I greatly value the wealth of experience and advice we have received from this online community, it has been a life saver (literally!) I am also wary of those who present themselves as having all the answers...as I know too well that my "OWN" answers are so experienced based, in OUR experience, that they may not truly match someone else.

 

Let's face it, we work with the knowledge we know -- glean from each other "what worked for us" and hopefully solve the "what is wrong" question...or at least the "what can I try" one.

 

Sudden onset OCD (perhaps with ticcing) has been a hallmark of PANDAS, and IF it is PANDAS many of us have been able to treat it--that is hopeful.

Edited October 16, 2010 by T.Mom

[mom love]

PhillyPA, checking this forum over and over is a symptom of overwhelming love for your child syndrome. And a symptom of smart and determined parent syndrome.

 

ok, our doctor ordered lots of bloodwork for us,and said the lyme western blot was a spinal fluid test. I said I was told it was a blood test. She ordered the lyme elisa and the lyme western blot igg and igm for blood work. I did not get a report back with bands. It just said Lyme ab negative. Is the lyme western blot a blood test?

[EmersonAilidh]

PhillyPA, checking this forum over and over is a symptom of overwhelming love for your child syndrome. And a symptom of smart and determined parent syndrome.

 

ok, our doctor ordered lots of bloodwork for us,and said the lyme western blot was a spinal fluid test. I said I was told it was a blood test. She ordered the lyme elisa and the lyme western blot igg and igm for blood work. I did not get a report back with bands. It just said Lyme ab negative. Is the lyme western blot a blood test?

 

"Lyme AB Negative" is the first test, the precursor one. Still doesn't mean that Lyme isn't at play though. My Western Blot was a blood test but I have heard of spinal fluid tests, too. Sorry I can't help more, that's all I got. :/