Lyme

[Johnsmom]

Everytime I open up the forum I see posts about Lyme. Just what is it that makes it so pandas like? Can someone tell me what the symptoms are, the red flags to look for, etc..

 

Thank you-

 

Johnsmom

[jayjay]

This article was posted on the Lyme forum...

 

http://www.publichealthalert.org/pdf/2009_10.pdf

 

After reading it I was amazed that the symptoms of lyme are in some ways identical to PANDAS. My son is yet another case of PANDAS that tests positive for lyme and bartonella. There were two reasons I checked out the possibility of lyme...

 

1. after multiple antibiotics(since January)and one IVIG in May of this year, he would improve initially, but he could not sustain an remission.

 

2. He had trouble walking when he woke up in the morning. The soles of his feet and knees hurt. Sometimes he even had trouble opening a water bottle or getting into the car. A 10 year old that seriously acted like he was 80.

 

He had been tested for lyme through the lab at Yale 3 times and all three times it was negative. I wasn't convinced that he didn't have lyme,(we live 3 towns away from Lyme, CT) So I took him to see a LLMD. We will be starting his Lyme treatment today.

 

In my opinion, it is just another infection that needs to be ruled out when your child has PANDAS.

[dcmom]

So, my question is: Do the kids with Lyme, also have pandas? Or was it a misdiagnosis?

 

Does anyone know the mechanism for how Lyme causes neuropsychiatric symptoms?

 

Thanks!

[NancyD]

Johnsmom, I would encourage you to check out the Lyme side of this forum. There are links to some great articles posted by other parents, like SF Mom, Momofgirls, PacificMama, and Philamom. It certainly opened my eyes and made me realize how similar so many of the symptoms are and how likely it may be that many of our children have co-infections.

 

I owe so much gratitude to SF Mom (Wendy) for urging me to get my DD14 tested for Lyme and other co-infections thru IGX. As many of you know, we have been on this journey for over 12 years and multiple diagnoses (i.e., ASD, colitis, bipolar, ADHD, PANDAS). I could not figure out why my daughter kept getting infected after so many IVIg infusions and why (when her tics and violent rages were finally gone) her anxiety and OCD was getting worse.

 

Our IGX tests just came back yesterday and it looks like she is considered IgM positive for Lyme Disease and positive for a co-infection of Mycoplasma. That would explain so much to me. I know I too must get tested, although I have had no symptoms other than walking pneumonia 30 years ago and chronic bronchitis for many years after. In fact, I was sick with an URI when I delivered DD.

 

So I join Wendy in urging parents to please rule out possible Lyme, Bartonella, Babesia, Mycoplasma, etc.

 

There is no doubt my daughter had/has PANDAS since she was 2. She consistently carried very high titers (up to 2740), and she responded well to abx and IVIg. Now I must get to the bottom layers and treat what I find so I can (once and for all) heal the PANDAS.

[Chemar]

from my understanding, by definition, Lyme Disease falls into the PITANDs category, while PANDAS is only used for strep induced symptoms

 

ie a child with PANDAS is also PITANDs, but not all PITANDs is PANDAS

[dcmom]

For a lot of us, pandas unfortunately becomes pitands (my girls included). In these cases, I can certainly see that lyme would/ could cause a pandas episode.

 

Neuropsychiatric lyme seems to have a very similar symptom list to pandas (and pitand).

 

So, I guess what I am asking is,

 

Most neuropsychiatric lyme cases are not pandas (and I am thinking not pitands), right? I am wondering/thinking that it is a different mechanism that causes the neuropsychiatric symptoms? Possibly, some children on the forum who were originally diagnosed with pandas, did not respond to treatment, and then got a lyme diagnosis were misdiagnosed from the beginning?

 

In pandas (in a nutshell), the immune system creates autoantibodies that attack the basal ganglia. Is there a different mechanism in neuropsychiatric lyme? AND do those with neuropsychiatric lyme typically have other areas affected (CNS, joints, etc).

 

I know this post is sort of lyme-y, but I think it is crucial for pandas and lyme parents to understand the mechanism behind the symptoms, and really how to differentiate the two. It has been stated so many times by parents that their pandas kids are now diagnosed with lyme- and frankly, it can be confusing to all. I have learned a lot about pandas (unfortunately) over the last two years, and thankfully my girls have responded beautifully to pandas treatment. This leaves me, for the moment, confident in our diagnosis, and not overly concerned with lyme. BUT- it would certainly help me to be armed with some scientific data- rather than just the daily readings that another child on the forum has lyme- which always gives me pause.

 

I have tried to research the mechanism of neuropsychiatric lyme- but there is SO much out there, and I just don't have the energy to do it- so I am hoping someone else already has

[Megs_Mom]

We have an LLMD for my husband. I find this question fascinating, but don't think you'll get an absolute answer - so much research is ongoing. Our LLMD thinks that "something" needs to cause the immune system to be vulnerable to PANDAS. This could be an underlying immune deficiency, Lyme, etc. So she thinks we are seeing an illness that is like an onion - once we peel off an outer layer, we may find the underlying challenge beneath also needs to be healed. If we don't find the inner layer, our kids may continue to be susceptible to PANDAS exacerbations.

 

I tend to think this is a good possibility, although I remain open to other answers!

[PacificMama]

I will try to offer a short reply here. But, for anyone interested in more information, please post on the Lyme board as well.

 

The mechanism in lyme or other similar infections that causes neruopsych behavior is 1. active infection itself residing in neuro system; and/or 2. That original active infection has created autoimmune dysfunction that can cause this same behavior. Most often, abx treatment will resolve these symptoms. When the infection clears, the autoimmunity fixes itself. However, sometimes it may be residual autoimmunity after infection clears. Research will continue in this area to better understand this.

 

Neuropsych lyme is IDENTICAL to what you all know as PANDAS symptoms. But yes, a person infected with lyme may have additional physical symptoms. However, it is completely possible for it to be only neuro symptoms.

 

"Lyme" is the term used most commonly, but what this really means is any number of infections: borrelia, babesia, bartonella, mycloplasma, anaplasma, erlichia, rocky mountain spotted fever to name the more common ones. They are often found in combinations, as tics and other vectors harbor collections of them. They are much more common than you would imagine.

 

What people here have found, is that the underlying cause of their immune dysfunction is one or more of these infections. When the immune system is compromised, strep and other infections can take hold. So yes, even with active strep infections, it may well be that there are other infections at the root that need to be addressed. You may well see a strep trigger to neuropsych issues, but still it may be that other infections need to be addressed.

 

Also not uncommon, these infections can be passed unknowingly from mother to child during pregnancy.

 

Dr. Cunningham has confirmed that high CamK can also be a result of lyme infection. There is nothing in the Cunningham test for CamK or antineuronal antibodies that is specific to strep. The test is to simply measure that a particular process is occuring, not which infection is driving that process.

 

FOR MORE INFORMATION, please see the articles on the lyme board posted under "evaluating your child for lyme", and "Outline by Dr. Corson".

Also, there is a post regarding the ILADS Conference beginning Friday. They will be streaming live video of the presentations. Please click the link to see the schedule Friday. There are some presentations on pediatric lyme, and neuropsych manifestations of lyme/other.

 

Hope that helps.

Mary

Edited October 13, 2010 by PacificMama

[PhillyPA]

DC Mom I think that you ask some very interesting questions. The Lyme post give me pause as well. Do you know why? Because they induce panic. I was on the Lyme forum the other day and I read Ann Corson's article about the symptoms of Lyme. The symptoms of Lyme seem to be everything under the sun. If your big toe hurts, you probably have Lyme. (This, of course, is an exaggeration). This is no way is meant to diminish the importance of getting your child tested for Lyme. As I mentioned in previous posts, when my child was 5 years old, he became sick overnight. It was drastic and alarming. No one knew what happened, yadda yadda yadda, we had him tested for Lyme. Three times as a matter of fact. We took him to an international known Lyme expert who didn't want to wait for the Lyme results because my son's situation was so serious. (And he was right to do this!) He was on IV antibiotics for 5 weeks. He did not have Lyme. Another doctor in this department said that she had seen an older child become completely autistic and then completely cured with IV antibiotics. That child tested positive for Lyme. (That child was cured quickly. It did not take months or years).

 

I question the chance of getting PANDAS, Lyme, mycoplasma and a host of other co-existing infections in one shot. That is like getting struck by lightening 10 times over. What are the chances? How can one have a healthy child one day and the next day have a slew of co-infections causing the disorder. It just doesn't make sense to me. We are all struggling to get our children well. In most cases we are desperate. Why does no one question the labs that test our children? If five labs say negative and one says positive - does that mean Lyme? Or does that mean false positive? Or does that mean the lab tech doing the test got a cup of coffee, got distracted,made a mistake. Please don't yell at me for these statements. These are just my logical thoughts.

 

I also question Lyme doctors who put children on a lengthy list of medicines. I read some of the lists of what medicines children were taken and my God it seems so overwhelming I would have a nervous breakdown having to maintain that schedule of medicines. Such little bodies getting so many medicines both herbal and pharmaceutical. For me, my system gets out of whack taking just one antibiotic. I took a fish oil a few months ago for a week and it made me feel so sick all day. It just seems like so much medicine. I can't wrap my head around giving that much medicine to a developing and growing little person. Again, not that my thought are the right thoughts - these are just MY thoughts.

 

Again, back to panic. What can be more frightening to have a disease that hides? It gives everyone pause. What if it is hiding and I need to give my child 10 plus medicines a day? I say go ahead. Get you child tested at another lab. You WILL find a doctor that will tell you your child will test positive for some tic borne illness if you look hard enough. Treat the child but if the child isn't drastically better in 6 months, I would be hard pressed to believe that it is Lyme. It is not that easy for parents with kids with PANDAS. You will be hard pressed to find a doctor that thinks your child has PANDAS.

 

Let's be nice here folks. My words are not meant to be angry. I'm just a parent trying to make sense of all the information I get on this site and combine it with the information I get from doctors.

[ajcire]

PhillyPa, I think you are only saying what a lot of us are feeling regarding all of this.

[KeithandElizabeth]

PhillyPA

 

I completely understand your point of view. I was aghast when lymemom was posting about the possibility of lyme as a possible PANDAS trigger. We live in Colorado and I felt that there was no way we could be dealing with lyme and I felt that my son had EVERY PANDAS symptoms and initially did well with HdIVIG. Eventually he began to deteriorate after 6 IVIG's and I panicked!!

 

I tested for lyme and coinfections searching for ways to save my son. He had almost stopped speaking to us and he was "checked out" To me, if your child is not healing, you keep fighting and keep searching. What else can you do....

 

Lyme treatment is sooo very complicated. It can take months to see improvements. And the coinfections are even more complicated and easy to miss.

 

For us, the lyme treatment has taken 7 months so far and my kids are on multiple antibiotics and herbs and detox formulas. But, they are both at least 90% better after 7 months of treatment. The difference is just incredible! I feel like we have our son back! I am SO thankful to have found the reason as to why the typical PANDAS treatment was not a complete cure.

 

So, I guess that I empathize with your thoughts because I felt the way you do once. But after seeing the difference in both of my children, I do encourage everyone starting this journey to test for ALL possible infections, including lyme via IGENEX and mycoplasma and strep, etc.....

 

Elizabeth

[KeithandElizabeth]

ajcire:

 

Again, I understand how you may feel this way, but it really feels "hurtful" to have all of this doubt towards the families who are dealing with lyme.

 

You have probably experienced this with your own family, friends, and doctors when dealing with "PANDAS."

 

As a mom who has seen dramatic improvement with treating my children for lyme and then dramatic improvement again when treating them for the cyst form of lyme and then again improvement when treating for babesia, I am now a believer. I feel as though these various treatments have literally saved my children and our family.

 

We all don't need to agree about everything on this forum, and debates are very helpful. But let us support each other because we are all already dealing with so little support in the world and we have all dealt with so much pain.

 

Elizabeth

Edited October 13, 2010 by KeithandElizabeth

[ajcire]

Elizabeth, I respect the parents who have the struggle of sorting out lyme. I do however think that it is important for people to know that they are not the only ones who are questioning some of this. I think that it is important to remember that with everything if you believe in it you will feel strongly about it but it just doesn't make things all fact so it makes sense to question it. Totally an off topic example.... I remember with my oldest being nervous about one of the vaccinations and questioning my pediatrician. He responded with that he could show me piles and piles of research saying it's safe. I responded with that I could show him piles and piles of research saying it's not. Which one of our piles was right? I have no idea. I question both our piles.

Edited October 13, 2010 by ajcire

[PacificMama]

No one has ever set out to induce panic by suggesting that there may be other infections at play. Any more than any person who suggests to an OCD parent that their child may have strep induced OCD.

 

Just because it seems implausible to some of you here, the situation with tick borne diseases, does not mean the world of science thinks it's implausible. Really, there is a whole big medical and scientific world out there that study these diseases every day, and know their complexity. As they have for years. This week there is a special hearing in Washington DC at the Institute of Medicine. Please take a look at some of the speakers there, which are just a small fraction of the people who work in this field.

http://www.iom.edu/~/media/Files/Activity%20Files/Disease/TickBorne/AGENDA-10082010.pdf

 

The abundance of data on this topic abolutely dwarfs by a thousand fold what is being put out about PANDAS. Please scan the medical journals.

 

Let people watch this weekend's conference and see what they think afterward.

 

And for what it's worth, it seems that most of the parents here who do end up going down the road of tick-borne infection report back vast improvement not seen previously.

 

Finally, I can assure you that all the lyme doctors, and all of us lyme parents HATE the use of antibiotics. But for now, it's the best treatment available. This was a topic at yesterday's hearing -- really, there are real scientists and medical professionals that work everyday to come up with better treatment alternatives to abx.

Edited October 13, 2010 by PacificMama

[dcmom]

okay, I want to slow and calm things down, because I feel this is an important discussion, and that Johnsmom's original question is getting lost.

 

So- I think all/most of us on the board can agree that a chronic and/or neuropsychiatric lyme is real. We have ALL been through heck with our kids, and REALLY want them better. We are ALL tired of having to be the medical researcher and decision makers, with lots of docs and others not standing by our sides. This is what PANDAS and LYME have in common. I think the question of what else they have in common, is what we should be discussing productively. There is really NO room on this forum to discuss the validity of either disease. But- there is room to discuss diagnostic criteria and treatment options- and that can be really helpful to ALL.

 

So- I will say I am a pretty level headed person, even throughout pandas. But- yes- the many posts on pandas kids being diagnosed and treated for lyme, does cause some mild panic inside. I am not saying the posters caused the panic, but the nature of being a pandas mom- many things can bring up a little panic.

 

So- for example- my kids (so far) are "classic pandas"- really healthy, overnight onset, total remission with pandas treatment- yet it is now an autoimmune condition for them- where if they have an immune challenge, they have a flare of ocd. Otherwise, they are robustly healthy and energetic. So, while they were only tested for lyme with one standard test and it was negative- I think they don't have lyme. However- we live in deer country- so I worry everyday that we will get it

 

So- I think maybe Johnsmom is looking for the same info as I: how does lyme differ from pandas? and are many of the kids now diagnosed with lyme, actually not pandas? So in other words- if you had initially treated for the lyme (with antibiotic cocktail)- would things be good, and would there be no need for pandas treatment?

 

Lets try to keep it supportive- and full of scientific fact, or immediate personal experience- please