What made you think Lyme?

[ziva]

My DS7 son was diagnosed PANDAS earlier this year.

 

He had a tick in his scalp last (for about 12-15 hrs) last fall.

 

During my visit with Dr.K I asked about getting my son tested for Lyme, and he asked if there was a rash at the bite spot. There was not, but it was on his scalp.....so I'm not sure if I would've even seen it.

 

My thought was why not rule that out since we had to go in for a blood work up anyway. But Dr.K said no need.

 

Do you think I should push for the test?

 

How would I know if there's any Lyme involment if we don't test?

[laure]

ABSOLUTELY TEST!! If you look at posts on the lyme forum, you'll see that most if not all started out as PANDAS. I never suspected lyme at all since it isn't prevalent where we live, but after 5 months of unsuccessfully treating aggressively for PANDAS, our PANDAS doc suggested Igenex testing. We had done the standard Western blot with our original Quest blood work, and lyme was negative, but the Igenex test found my dd positive on many bands. We did not make real progress until we began treating for lyme. And you saw a tick - a no-brainer in my opinion.

[laure]

Also wanted to add that 80% of lyme bites show no rash at the site. Most ticks (can't remember the exact percentage) carry multiple infections, (lyme, bartonella, babesia, ehrlichiosis).

[aidansmom]

I would have to agree. I would find a way to test for Lyme and/or go see a LLMD. If Dr. K won't do it find someone who will.

 

We started out as PANDAS but we got a positive Lyme test so we are pursuing that. Lyme can cause similar symptoms to PANDAS. Or, Lyme and PANDAS can go hand in hand since they both can be a part of a dysfunctional immune state.

[lyme_mom]

The PANDAS doctors do not appreciate how many kids w pandas have Lyme and other infections. I would go to a Lyme doctor before I would go to a pandas doctor because wouldn't it be better to avoid ivig and pex if it isn't necessary?

I also have heard that Lyme often attacks whatever is closest to the bite .my son had a bug bite behind his ear and then developed bells palsy on that side.

[mama2alex]

We didn't believe it was Lyme for a long time. There's such a lack of information about it and misinformation as well, that we had a very hard time believing our DAN doctor when he said he thought it was Lyme. Our son's test was negative, but he tested positive for Bartonella - this was done a few weeks after his sudden onset of PANDAS. Still, we ignored what the DAN doc said and pursued all the recommended PANDAS treatments for over a year before seeing a Lyme-literate doctor. We finally decided to see a Lyme doctor after two IVIG's and over a year of different antibiotics. Our son wasn't much better and a friend from this forum was urging us to get a second opinion on the Lyme/Bartonella. The LLMD started treating the Bartonella at our first appointment, since we had a positive test. We saw dramatic improvements in 12 weeks. They are now also treating for Lyme based on symptoms, family history and the fact that he has Bartonella. Our Lyme doctor also determined that our son was harboring strep in his nasal passages and he lost all his moodiness after treating it with an antibiotic nasal spray. So they don't just look at Lyme/co-infections. He's now making slow, steady progress.

 

I believe any child with PANDAS should not only be tested, but see a Lyme-literate (ILADS-trained) doctor for a clinical diagnosis, because the tests aren't all that reliable. They will look at all possible causes of the PANDAS onset, including Lyme, co-infections, viruses, heavy metals, strep, food allergies, etc.

 

In your case, since you saw a tick, you should see an LLMD right away. You can ask on the Lyme forum here for recommendations. I think Dr. K is not that familiar with Lyme or he would know that lack of a rash doesn't rule it out.

Edited April 14, 2011 by mama2alex

[Guest pandas16]

I have PANDAS, I tested positive for several Lyme bands. I completely ignored the test and am getting steadily better with an immunomodulatory treatment. I'll also add that when I was originally diagnosed with PANDAS in 1998 it took several immune related treatments to get me well. If my parents had stopped at 1. I certainly wouldn't have been functional. Whatever you chose, just know it takes time. My personal opinion on this would be to not test. Don't waste the time or the money. My understanding is that the bacteria isn't the problem, the problem is the abnormal immune response to a specific pathogen no matter what it is. I was treated at New York Presbyterian Hospital by some truly amazing pediatric rheumatologists in 1998 when PANDAS barely existed. I am now receiving treatment in New York again and the underlying philosophy has not changed. The question is " why is the immune system attacking itself in response to this bacteria?" not what is the bacteria. I'm not a doctor but I had severe PANDAS. I've been to a lot of well respected doctors. I've had the disease for 14 years. I never tested for Lyme or coinfections in 98 and managed just fine for 11 years. Now I'm ignoring Lyme and getting well just the same. I'd listen to Dr. K.

 

Don't get me wrong, I have no doubt that Lyme exists and that there are genuinely people suffering from it. I just don't personally think it's the root problem in PANDAS if your child truly has a strep/flare strep/flare history. It's just an opinion so please no Lyme people beat me up for it. Furthermore in response to all of the positive results people are seeing from Lyme treatment you should know that any tetracycline drug (one of the drugs used to treat Lyme) acts as an anti-inflammatory and also reduces glutamate. Inflammation is problematic in all autoimmune diseases and there have been several articles published recently on glutamate immune related OCD. Therefore its possible that in some cases the positive results could be a result of reducing both inflammation and reducing the hyper activity of glutamate in the brain.(Especially those who have noticed a dramatic improvement in OCD) Also, in some cases Lyme treatment closely resembles the Marshal Protocal which may be effective in killing the L form of strep- hence a slow reduction of autoantibodies. If you do decide to pursue Lyme treatment, you should know that a p41 antibody is not necessarily a sign of Lyme. There are many different flagella type bacteria. Also IgMs that don't turn into IgGs over time are more likely to be cross reactivity.

Edited April 14, 2011 by pandas16

[sf_mom]

I politely disagree.

 

We have all kinds of children NOT getting well with PANDAs treatment that had PEX, numerous hdIVIGs (sometimes five or more) and several years of suffering that are now trending better due to Lyme protocol. I know those parents wished they had 'known to check or checked' for Lyme in advance of aggressive and expensive treatments that often require travel to another city and Dr. Because the presentation can be identical inclusive of sudden-on set from strep there is no way to tell if its PANDAS or Lyme without testing.

 

-Wendy

[sf_mom]

We looked into Lyme when our son starting having intestinal issues post PANDAS treatment. It turned out to be a unresolved parasite due to chronic Lyme. Our son's diagnoses lead us to check our younger twins... which potentially saved them from sudden-on set and autism diagnoses. All three children have congenital Lyme with positive Lyme/Bartonella/Babesia results.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[Guest pandas16]

SF Mom, I understand that you naturally disagree because Lyme treatment has helped your child tremendously. However, from what I said medically what do you disagree with?

 

The glutamate immune part

The Tetracycline reduces glutamate part

The Tetracycline reducing inflammation part

The P41 antibody part

The immune system being the root cause and not the bacteria part

The IgM IgG cross reactivity part

 

I just would like to understand which part you disagree with and why for my own education. We can all learn so much from each other.

I can find medical literature to back up every single thing that I wrote if you would be interested in seeing it.

Edited April 14, 2011 by pandas16

[sf_mom]

I got the impression from your post that testing for Lyme was not necessary with PANDAS children. Unfortunately, many have found the complete opposite out the hard way after years of trying to get their kids well.

 

I also take issue with the following two points.

 

The immune system being the root cause and not the bacteria part...I believe the complete opposite and so does our Dr. My children are not biologically related to me but were carried in-utero by me. How is that all three could have similar auto-immune issues if there wasn't a common trigger?

 

The IgM Igg part There is plenty of information on this issue on the internet... don't even care to debate the topic

 

BUT, I am all for whatever works to get these children well. Many on the forum stumbled on the Lyme issue a year ago when these kids weren't getting well from PANDAS treatment. Some parents were even told their kids were just mentally ill when PANDAS treatment didn't work. Thankfully, thankfully people like Lyme Mom, Pacific Mom and Elizabeth kept insisting people check for Lyme. Elizabeth was kind enough to get on the phone with my girlfriend who's son wasn't doing well with PANDAs treatment and with each hdIVIG he was getting worse. If you only knew how sick this little boy was and where he is today. It was vitally important that Lyme was treated appropriately. You can head over to the Lyme forum and read some of the newer posts from just today...... Its very sad but for some those treatments are not working.

 

-Wendy

Edited April 14, 2011 by SF Mom

[EAMom]

Hi Ziva,

 

where do you live?

 

where were you when your son got the tick?

 

where else in the US have you lived/vacationed (possible tick expsoure)?

[Guest pandas16]

I think PANDAS was finally becoming a little more well known and now everyone going to Lyme is just muddying the waters and making things more difficult in the long run. How can it possibly be the bacteria when millions of children get strep and probably lyme too without getting severe ocd and tics? If it was the bacteria itself then everyone who got strep or lyme or whatever would have neurological issues. I suppose that's where the disagreement between PANDAS and Lyme really lies then. I believe its the immune system. Scientists hypothesize that 90% of cells in the body are microbes,so naturally there will always be an "intracellular infection" in the body even if you get rid of Lyme. I also was COMPLETELY incapacitated as a child for a long time, I stuck with PANDAS treatment and got well. It took 2 years. Just because something doesn't work in 6 months doesn't mean you automatically have Lyme disease. With all due respect I don't know that little boys story but you don't know mine. I went through ###### and back. I was diagnosed with PANDAS before your kids were even born and before you knew the disease existed. Do you have ANY idea how hard it was to get PANDAS treatment in 1998????? I was 8 different SSRIS and anti seizure medications as a child. I was diagnosed with 7 different diseases before PANDAS. I stuck with PANDAS treatment and GOT WELL. I started high school with a 4th grade reading and math level and just got accepted into NYU for my masters. I stuck with the immune system. I suppose we can respectfully agree to disagree.

Edited April 14, 2011 by pandas16

[Christianmom]

pandas16 --

 

This is very interesting to me because though my son seems to be over his strep infection, he is much healthier, but not better (severe OCD). Perhaps he still has infection, or perhaps his immune system is just "stuck" and he needs IVIG or PEX. Prednisone is the only (temporary) relief he has gotten which tells me inflammation is still there.

 

I think it would be fair to argue both sides of the issue: kids that get PANDAS have an autoimmune problem of some kind or they would not have PANDAS, yet the autoimmune issue seems to have at least been triggered by infection (theoretically if our kids had never been exposed to strep they would not have PANDAS now). So, though the immune system is the problem, infection is a problem as well? It seems that kids have had IVIG/PEX/HD steroids (i.e., fixed the autoimmune problem) yet have to go on prophylactic antibiotics to keep them from getting strep. If they don't, they end up right back where they started if exposed to strep again. So wouldn't this mean infection does matter even if the immune problem is fixed?

 

This is a side note, but someone mentioned to me that they were pursuing lyme, not because they thought their PANDAS child had lyme, but because their child was not 100% after IVIG. The thought with pursuing lyme was that the lyme antibiotics treat lots of infections, not just lyme. So perhaps her child has an underlying infection that the lyme treatment would inadvertently get rid of. If I were to pursue lyme, I would do it for that reason. I don't think my son has lyme--no lyme symptoms at all, no known tic bite.

 

Could I ask what immunomodulating therapy your doctor is using?