Thoughts on Lyme and OCD

[Charlotte Mom]

I think it's possible that OCD is a symptom not a diagnosis. Thus PANDAS is when strep antibodies attack your brain and causes you to have OCD symptoms OR when Lyme antibodies attack your brain and you have OCD symptoms OR when pnemonia antibodies attack your brain and cause OCD symtoms. All are an overreaction of your immune system - but caused by different infections. Thus why some antibiotics work for some kids and not others. Those who have PANDAS specifically due to strep are able to benefit from the (little) reserach that has been done to date. But those who have PANDAS due to other infections are still struggling. Thus we need protocols for clearing up these various infections that cause an overreaction of the immune system for those kids/people who are genetically prone to have immune systems overreact to infections.

 

Each probably needs it's own protocol (how to get rid of lyme infection and how to get rid of strepinfection). I think it's even possible that the Lyme treatment protocol (since it is so extensive)can likely clear up strep. Have you ever heard of this?

 

Has anyone's kid had Lyme? been treated for Lyme instead of Strep and had the POCD symptoms subside... the PANDAS go away?

[dcmom]

What is the lyme treatment protocol?

 

I think it is entirely possible, that even if strep is the intitial trigger of pandas and clears up (does it only have to be strep though- or is that just something that is imposed for research procedures), that if a child is fighting any other underlying infection (like lyme), their immune system is constantly engaged, and therefore they are constantly having an autoimmune reaction.

[Fixit]

What is the lyme treatment protocol?

 

I think it is entirely possible, that even if strep is the intitial trigger of pandas and clears up (does it only have to be strep though- or is that just something that is imposed for research procedures), that if a child is fighting any other underlying infection (like lyme), their immune system is constantly engaged, and therefore they are constantly having an autoimmune reaction.

 

 

AGREE!!!

[szcasey]

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

[Charlotte 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

 

My daughter is pretty much the same story as your son - including the rash. We are going to MD to see Dr Beals and Dr Jones. My cousin sees these two docs and says they are great. It is interesting that your sone received 250mg Azithrimycn 1x/day for Lyme - - that is what my daughter is receiving now for PANDAS post-IVIG. It has been five weeks and we have seen quite a saw-tooth recovery - with a lot of teeth! How long did he take the Azith and Ripramin before you stopped it? Sounds like he was off them for quite awhile. I have heard that when treating lyme you can get a whole lot sicker initially and that is how you know the treatment is working -its killing the infection- - called die-off. What neuroligist are you seeing? Does this person work with Dr Latimer? Maybe while we are up there we should see him to?!

[PANDAS_Denmark]

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

 

Hi -

 

Just wanted to add, that my son has (had and still has) this scarlatini form rash prior to every PANDAS exercabation, including the first one !

[szcasey]

Hi Charlotte Mom,

 

Chris' original treatment for Lyme was 150 mg Rifampin 2x day and 250 azith in the am. Chris did have a Herxheimer reaction for the first month (plus) while on the two abx for Lyme. But after awhile Chris was just so miserable, we figured something else was going on. We gradually stopped the Rifampin; first took the morning Rifampin every other day... then dropped morning Rifampin completely. While taking the Rifampin in the evening only, it was obvious that it wasn't working for Chris. After talking to Dr. Jones' office, we dropped the PM Rifampin (early November). We continued the 250 azith and saw huge improvements. By mid-December, we no longer had refills for the azith and didn't have insurance (while hubby changed jobs). Now we have insurance again, saw Dr. Jones on Monday and have our azith refills. So it's 4 days on azith (not 5 as I stated in my original post).

 

The pediatric neurologist who diagnosed Chris with TS is Steven Wolf at Beth Israel Hospital, NYC... the neurologist we're going to see (who treats PANDAS) on 2.9 is Dr. Murray Engel, Stamford, CT (203.359.1790). I do not know if Dr. Engel works with Dr. Latimer... I'm new to PANDAS. I found this neurologist by emailing Beth Maloney, the author of "Saving Sammy, the Boy Who Caught OCD." Additionally, her FB page (a public profile) has a listing of MDs/alternative docs by state who treat PANDAS.

 

You are going to LOVE Dr. Jones. He is absolutely wonderful. He's so thoughtful, brilliant and great with kids!

[Megs_Mom]

I AGREE!!!! OCD IS A SYMPTOM!!! Yes!

 

Ok, now that I have calmed down OCD is a fairly common neurological indicator of auto-immune illnesses - I would guess that tics are as well, although most of my time is spent in the OCD research world. I really think if Sudden Onset OCD occurs, there will always be a medical reason - you just might have to search for it. While we were strugging to figure out if Meg had PANDAS, I obsessively (wonder where she gets it!) researched autoimmune illnesses because this felt so medical. Anxiety disorders are one of the top symptoms of autoimmune illness. Parents and practioners should be looking at Lyme, Lupus, Thyroid, Celiac, Wilson's, etc. We only fully accepted PANDAS after everything else had been ruled out as possible additional issues. And even with a PANDAS diagnosis, we are all (docs, parents) concerned that this was an early wake up call for possible Lupus due to high ANA levels. We are not freaking out - but we will test this marker every year to be sure we are not missing anything.

 

What is frightening to me, is that not a single doctor, for years, despite clear medical records, ever used sudden onset OCD as a indicator that simple medical tests should be run. We had to figure that out on our own - and then one clue finally sent us to a good Neurologist. Someday, I hope that sudden onset OCD is like a bad rash - a sign that doctors will then explore for cause.

[momto2pandas]

Absolutely agree. I believe this is the case with pretty much all psychiatric disorders. They are all descriptions of symptoms, not diseases with known pathologies. To me, having worked for years in psychiatry, it has always very strange that they are even all considered separate disorders/diseases, despite the fact that it is very hard to find a patient who meets criteria for only one diagnosis. Almost everyone has some combination of depression, anxiety, OCD, panic, hypomania, eating issues, etc. at least over the course of their lifetimes. Granted they might not be severe enough in any one of these to meet official criteria for each diagnosis, but the symptoms are there at some level, at some times, just with different emphasis in different people and at different times. I've always wondered if a lot of the differences are partly a matter of how the disease plays out against people's own personalities. Expansive personalities might get a little more manic, shy personalities a little more anxiety stuff, etc. Seems to me that there must be an interplay there between "normal" differences in people's emotions/personality and "abnormal" stuff that overlays it.

 

I also don't think that these exacerbations are always caused my infections in all PANDAS folk. At least in our family, we have seen stuff clearly caused by allergic reactions (even bee-stings!). The behavior reaction might be brief, but it is still unmistakable. I had a broken bone a while back that got very inflamed, and I had a reaction to that. So I actually think that at least in some people a lot of symptoms are more a matter of inflammation (often caused by infection but not necessarily) than of infection per se.

 

I think it's possible that OCD is a symptom not a diagnosis. Thus PANDAS is when strep antibodies attack your brain and causes you to have OCD symptoms OR when Lyme antibodies attack your brain and you have OCD symptoms OR when pnemonia antibodies attack your brain and cause OCD symtoms. All are an overreaction of your immune system - but caused by different infections. Thus why some antibiotics work for some kids and not others. Those who have PANDAS specifically due to strep are able to benefit from the (little) reserach that has been done to date. But those who have PANDAS due to other infections are still struggling. Thus we need protocols for clearing up these various infections that cause an overreaction of the immune system for those kids/people who are genetically prone to have immune systems overreact to infections.

 

Each probably needs it's own protocol (how to get rid of lyme infection and how to get rid of strepinfection). I think it's even possible that the Lyme treatment protocol (since it is so extensive)can likely clear up strep. Have you ever heard of this?

 

Has anyone's kid had Lyme? been treated for Lyme instead of Strep and had the POCD symptoms subside... the PANDAS go away?

[Debbie1]

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[Charlotte Mom]

I think it's possible that OCD is a symptom not a diagnosis. Thus PANDAS is when strep antibodies attack your brain and causes you to have OCD symptoms OR when Lyme antibodies attack your brain and you have OCD symptoms OR when pnemonia antibodies attack your brain and cause OCD symtoms. All are an overreaction of your immune system - but caused by different infections. Thus why some antibiotics work for some kids and not others. Those who have PANDAS specifically due to strep are able to benefit from the (little) reserach that has been done to date. But those who have PANDAS due to other infections are still struggling. Thus we need protocols for clearing up these various infections that cause an overreaction of the immune system for those kids/people who are genetically prone to have immune systems overreact to infections.

 

Each probably needs it's own protocol (how to get rid of lyme infection and how to get rid of strepinfection). I think it's even possible that the Lyme treatment protocol (since it is so extensive)can likely clear up strep. Have you ever heard of this?

 

Has anyone's kid had Lyme? been treated for Lyme instead of Strep and had the POCD symptoms subside... the PANDAS go away?

 

My dd12 recently had a positive lyme test. We believe she has PANDAS and lyme since her lyme results indicate a recent infection, but she has had tics on and off for several years, many positive throat cultures, elevated titers, and exacerbations which have correlated with strep exposure. It would explain why, though, she has been unable to get over her most recent exacerbation which began in June 2009.

 

She was given 6 weeks of zithromax with initial improvement, but then a backslide with a cold. She was recently switched to Omnicef. If that doesn't help, I've been told IV antibiotics may be in her not so distant future as well as IVIG (although insurance doesn't cover for lyme either).

 

Who is your doctor who is helping you with the Lyme and the PANDAS - is it the same doc?

[P_Mom]

Debbie..the lyme test you are speaking of...can you go further into detail.? I see you said it indicates early infection...that would mean she is having an IGM response...not an IGG, which shows up in later infection. Did she just have the Elisa? Or, did they do a Western Blot? Lyme tests are NOT all that reliable. Did she have a tick bite? A rash?

 

If a person only shows an IGM response in the lyme tests... and not an IGG response, the likelihood of a false positive is very likely....even with IGG...false positives happen all the time with Lyme....as well as false negatives. Epstein Barr virus antibodies (which basically everyone has) is known to cross-react with the Lyme test...as well as several RHEUMATIC conditions....rheumatic conditions are often the culprit in a positive Lyme test, IGM only (early infection) where a person has be ill for longer than 4 months.

 

Be careful about the Lyme diagnosis based on that result alone(if that is even the case)...not saying it can't be..just be careful

[smartyjones]

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.

[P_Mom]

can you tell me if he had the Elisa (they usually do this first, as a screening..if positive, they move on to the Western Blot)....or the Western Blot? The elisa is more sensitive, but, the Western blot is more specific.

[Debbie1]

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