Lyme

[Kayanne]

DCMom, you are right...we need to keep trying to determine what are the differences between Lyme and PANDAS...not to divide and segregate, but to have a better road map for us when treating our kids.

 

To read all the Lyme statements made...Lyme and PANDAS symptoms are identical. There really has not been a lot offered up to try to help us parents distinguish the two, other than a "clinical diagnosis." Which, I feel pretty confident that if I looked hard enough, I would find an LLMD to treat my daughter.

 

Perhaps we should start polling or something.

 

Although, just to clarify--it is just strep in my daughter's case.

[sf_mom]

DCMom, I'll be bold enough to say our initial diagnoses was wrong but not necessarily.

 

I did do some additional on-line investigating as to why children with LD might be thrown into a tail spin when exposed to strep... and the only answer I could find was that strep and lyme bind to the same protein 'Factor H'. I did have brief e-mail correspondence with Madeleine Cunningham and she promised to read the attached study but no further explanation was provided.

 

http://www.jimmunol.org/cgi/content/full/169/7/3847

 

As for Dr.'s in the Lyme world... I think even they are in disagreement if auto-immunity exists in absence of underlying chronic infection. Some will say... if symptoms persist the chronic infection is still there, some hedge and think auto-immunity while other Dr.'s completely diverge and feel its solely the remaining toxin's from the bacterial infection that was present in the body that is still causing continued chronic symptoms/auto-immunity. Our Dr. happens to believe that when the chronic infection is gone auto-immunity stops. His biggest concern is can the bacteria be fully eradicated? Given that you may not be able to fully eradicate, he tries 'fix' the immune system enough so the body can contend with remaining bacterial load.

 

As for testing. As we have all learned its important to fully investigate strep, mycoplasma, Lyme Disease and all of its potential co-infections. I'm now a little shell shocked from our experience thinking 'what have we still missed'... scary thought. Again, we could test, test, test, test..... but the bigger question I think is the treatment providing success? If not, maybe further investigation is warranted.

 

As for the Lyme testing you really have to understand why specific tests are better than others and why the CDC standardized testing has proven to have a high rate of false negative. All the information, is provide in the following links.

 

Explaining Western Blot tests: http://flash.lymenet...TML/022767.html

 

WB for Lyme: http://www.anapsid.org/lyme/wb.html

 

Understanding the WB: http://www.lymenet.d...sts/brenner.htm

 

If you are concerned there are false positive results with antibody testing for Lyme cross reacting with other infections/viruses, do follow-up testing via PCR and DNA testing.

Edited October 13, 2010 by SF Mom

[PacificMama]

DCMom, you are right...we need to keep trying to determine what are the differences between Lyme and PANDAS...not to divide and segregate, but to have a better road map for us when treating our kids.

 

To read all the Lyme statements made...Lyme and PANDAS symptoms are identical. There really has not been a lot offered up to try to help us parents distinguish the two, other than a "clinical diagnosis." Which, I feel pretty confident that if I looked hard enough, I would find an LLMD to treat my daughter.

 

Perhaps we should start polling or something.

 

Although, just to clarify--it is just strep in my daughter's case.

 

I have never meant to imply that lyme and pandas are identical. If I have, then I've done a bad job with my writing/posting! To clarify, there are many, many differences between the two. However, it is entirely possible for a person infected with lyme or other similar infection to present in a manner that would look nearly identical to what you understand to be PANDAS. That is, the same presentation, the same symptom set. Sometimes people with lyme/other only have the neuro symptoms, not the other possible physical symptoms.

 

BUT having said that, an experienced lyme doctor, conducting a very thorough examination, would likely be able to distinguish the difference in someone who has strep only and someone who has an infectious pathogen present in their body. There is obviously lab work to consider. But there are physical clues, some very subtle, that tell a doctor that one of these infections might be present.

 

There is LOTS of information out there. I don't know if you saw my suggestion to read a couple of the articles posted on the lyme board -- evaluating a child for lyme, and Outline from Dr. Corson.

 

ALSO, I strongly suggest that people here watch this Friday's ILADS conference presentations that will be streaming live video. There are several of interest, including neuropsych manifestations of lyme. There is a whole track at this conference dedicated to neuropsych issues and these infections. Even if you are certain you only have strep, it would seem there would be material of interest. See the link on ILADS conference.

 

Mary

[matis_mom]

I don't want to add to the confusion, or steer anyone in the wrong direction, but I have to share our story.

Originally saw an LLMD, she was convinced DS had PANDAS with underlying LYME. Tests never supported this and I did not know any better. They also highly suspected Babesia, again, all labs negative. They started treating him and we saw physical improvement but OCD/anxiety still high. We saw Dr. Latimer and had great results with steroid taper, but about every four weeks symptoms would flare. We tried a couple more rounds without great results. We consulted with Dr. Bouboulis for a second opinion before proceeding with plasmapheresis (which was Dr. L's recommendation since ds did not mantain gains, even though he was on high dose Augmentin, he would still "react anytime there was strep in the household"). Much to our surprise, when we did Dr. Bs initial workup, which includes testing for Lyme via a Western Blot, ds showed 4 bands positive after a year on high dose antibiotics!

 

Now I am seeing that our original Dr. was right. I am not saying Dr. Latimer was wrong, all I am saying is yes, he keeps reacting to strep, but I firmly believe Lyme disease (and/or one of the coinfections) is what is causing his immune system to go haywire. Researching this over and over, I have learned that

a] Babesia is known to cause neuropsychiatric symptoms very similar to PANDAS

b] Bartonella is known to mess up your immune system, to the point where if there is Bartonella most likely all other test will come back negative until the Bartonella is treated.

c] Borrelia (Lyme disease) can cause most of the same symptoms as PANDAS, and it seems to "flare" on a monthly basis

d] Strep and Lyme seem to go hand in hand...

 

So, with all this added to the fact that we see deer around all the time, my husband has had it, I have it, and two of my other kids (coincidentally the ones that kept getting strep/impetigo on a monthly basis!) will be getting tested soon for Lyme and coinfections, I owe it to all other PANDAS parents out there to tell our story.

Please, before you proceed with any more aggresive procedures (IVIG/PEX), make sure you have ruled out Lyme Disease and co-infections.

 

I am waiting to get the CamK result for my dd10, whom I am very worried about because she is quickly deteriorating into depression/worries/anxiety. The pediatrician is treating her with doxcycline for 30 days, suspecting Lyme. Now she is having severe headaches with pain over/around/behind the eye (this could be a symptom of Babesia). So, we have an appointment lined up with an LLMD, who is also familiar with PANDAS.

 

Sorry to go on and on. Each case is different but there are enough PANDAS kids testing positive for Lyme to make it, in my opinion, "standard procedure" to rule out Lyme first. It should be taken into account too that a negative test DOES NOT RULE OUT LYME. My son was tested repeateadly over a year ago when he was having PANDAS symptoms plus joint pains, fatigue, etc, and nothing showed. You really need to see an LLMD to be sure.

 

Am I sorry that we took this PANDAS "detour"? No. Dr. Latimer gave him his brains back, she got him back to a point where he is very functional and we know he can get back to 100%. I don't even know if we would have ever found the Lyme any other way (or rather, believed in the original diagnosis by the first LLMD we saw.) But for my second PANDAS/Lymie child, I am choosing to treat Lyme and co-infections first, and see if that takes care of the neuro-psychiatric part.

 

God bless everyone who has shared their stories and resources!

 

My prayer is that in each child the true underlying infection will be promptly found and treated.

 

Isabel

Edited October 14, 2010 by mati's mom

[P_Mom]

 

Nancy....a child CAN have Lyme and PANDAS.....I just don't believe it is as common as presented on here.....

 

P.Mom, I am glad you clarified that as you had earlier said

First, I do not believe that PANDAS and Lyme ultimately co-exist. They are two distinct conditions.......

 

I am not sure why there has to be an "either, or..." approach, when any person at any time can be infected with more than one microbe, with each having it's own resultant symptoms, as well as likely compounding those of each other.

 

Maybe I am misunderstanding the sentiments here, but I am not sure why there has to be this divide? when the final objective is to identify what is making a child ill, and then treat as comprehensively as possible to try to heal them.

 

 

Cheri,

 

Sorry about the confusing statements. As you know, it is hard to express exactly what we are feeling/thinking down in writing.

 

When I said that I do not believe that Lyme and PANDAS co-exist, I was referring to the notion that many of us have gotten that Lyme is at the root of PANDAS, and that "most PANDAS kids have Lyme." This, I believe, is just not the case. BUT, can a child with PANDAS contract Lyme and therefore have two distint conditions feeding off one another, yes. I hope I am making sense.

 

As for the need to make a distinction/divide....I personally believe it is crucial! PANDAS kids can be helped tremendously, even put into complete remission, with the use of steroids. Steroids are extremely dangerous for use in children who have Lyme disease. I know you know the dangers of the wrong meds!!!....this is why the difference is very important. Also, children with Lyme won't benefit as much as a PANDAS child from costly IVIG.(if not covered) It would be a shame for someone to spend 10K on a treatment that really won't work or last, or take the risks that the procedures involve unnecessarily.....same goes for PEX. So, the divide comes down to treatment. If antibiotics work....you are in "the clear" be it PANDAS or Lyme, (in a nutshell)...but, if you need further, more aggressive treatments...the wrong meds can be devastating. My LLMD said that steroids can make Lyme "impossible to eradicate." I had to make a pledge to him on my first visit that unless my life or eyesight was in immediate danger....I would not allow anyone to prescribe me steroids.

 

See, it is important, outside of the antibiotics, the treatments differ. Kinda like it is important to know the difference between TS and PANDAS......very different treatments.

Edited October 14, 2010 by P.Mom

[PhillyPA]

Do children with Lyme disease get Sydenham chorea?

[P_Mom]

I have never heard of it....but, I am sure the answer is yes. I wonder if any child that has been diagnosed with Lyme of late has had the bull's eye rash? I am pretty sure Lyme Mom's child had it...her story is the most clear-cut Lyme case I have heard. (maybe PacificMama's child had it too, don't recall)

 

Does anyone know if any of the other children came down with the bull's eye rash?? I know it is not required for a Lyme diagnosis, and, not all Lyme cases will present with the rash. I have heard all kind of statistics...from 30% show a rash...to as much as 80-90% show a rash.......I haven't heard of many, if any, save the ones I mentioned...that had the bull's eye rash. Correct me if I am wrong....

[sf_mom]

My friend's son in 2007 had 8 of 9 markers for RF.... They spent 8 months trying to eradicate the strep with antibiotics. They were finally able to say the strep was gone when they pulled his adenoids but his PANDAS symptoms persisted. After his first hdIVIG all strep titers resolved along with TICs. He would start to worsen between 8 to 12 weeks post each hdIVIG with anxiety, rage, panic attacks, ocd. Finally he was tested for LD and he had co-infections of bartonella and Ehrlichiosis. Currently, being treated for Lyme and all symptoms but mood liability have resolved in 18 weeks post his last hdIVIG.

 

I know RF is not SC but its similar. I just wanted to share how difficult a time he was having eradicating step when the underlying infection of Lyme was present.

[Chemar]

yup, I sure do understand about the struggle to find the right words sometimes P. Mom! happens to me all the time

 

just so I am not misundersood here either ...I am not for one moment suggesting that PANDAS and Lyme disease are the same, nor that they should be treated the same way!

My comments were that I did not understand why there should be a divide between members here in terms of arguing as to whether the two illnesses might occur simultaneously in some kids, as it seems pretty clear that they can, or to argue over which may have come first, as that is often impossible to determine.

 

Nancy....a child CAN have Lyme and PANDAS.....I just don't believe it is as common as presented on here.....

 

P.Mom, I am glad you clarified that as you had earlier said

First, I do not believe that PANDAS and Lyme ultimately co-exist. They are two distinct conditions.......

 

I am not sure why there has to be an "either, or..." approach, when any person at any time can be infected with more than one microbe, with each having it's own resultant symptoms, as well as likely compounding those of each other.

 

Maybe I am misunderstanding the sentiments here, but I am not sure why there has to be this divide? when the final objective is to identify what is making a child ill, and then treat as comprehensively as possible to try to heal them.

 

 

Cheri,

 

Sorry about the confusing statements. As you know, it is hard to express exactly what we are feeling/thinking down in writing.

 

When I said that I do not believe that Lyme and PANDAS co-exist, I was referring to the notion that many of us have gotten that Lyme is at the root of PANDAS, and that "most PANDAS kids have Lyme." This, I believe, is just not the case. BUT, can a child with PANDAS contract Lyme and therefore have two distint conditions feeding off one another, yes. I hope I am making sense.

 

As for the need to make a distinction/divide....I personally believe it is crucial! PANDAS kids can be helped tremendously, even put into complete remission, with the use of steroids. Steroids are extremely dangerous for use in children who have Lyme disease. I know you know the dangers of the wrong meds!!!....this is why the difference is very important. Also, children with Lyme won't benefit as much as a PANDAS child from costly IVIG.(if not covered) It would be a shame for someone to spend 10K on a treatment that really won't work or last, or take the risks that the procedures involve unnecessarily.....same goes for PEX. So, the divide comes down to treatment. If antibiotics work....you are in "the clear" be it PANDAS or Lyme, (in a nutshell)...but, if you need further, more aggressive treatments...the wrong meds can be devastating. My LLMD said that steroids can make Lyme "impossible to eradicate." I had to make a pledge to him on my first visit that unless my life or eyesight was in immediate danger....I would not allow anyone to prescribe me steroids.

 

See, it is important, outside of the antibiotics, the treatments differ. Kinda like it is important to know the difference between TS and PANDAS......very different treatments.

[Megs_Mom]

I am never sure why the argument either. Ultimately, all we each care about is bringing joy back to the lives of our own child - and for most of us, then to help others find that same place. But honestly, I don't care if there are 20 different diseases that cause the same sorts of illness. And I won't be surprised if many of them co-exist or cause others to be more severe in presentation. I just care that we identify each of them, learn to test for them and how to treat in the least invasive, most effective ways.

 

I also tend to think that the most severe or resistant cases hand around longer on the boards. So it seems natural that those with classic pandas have moved on - and those remaining are finding additional causes to their children's issues.

 

We tend to be pretty systematic in our approach. We try not to over-react when things are good, and to try anything reasonable when things are bad. Honestly, I am thrilled to learn of the possiblity of Lyme involvement. I really don't think that is our case (I also wonder about the overnight part of it - if it arrives in one day - can that be Lyme?) - but if it is, the Azith is taking care of it at this point. If we go south again, you can bet that Lyme tests will be at the top of our darn list. On the flip side, learning about Lyme has been an interesting part of trying to heal my husband - we are still on that path, and I can speak first hand, that it is as confusing and complicated as our search for PANDAS was. Only time will tell me of the right answers for our entire family. But we want to hear and learn as much as we can on all issues that cause neuropsychiatric issues.

 

I think I tend to listen & absorb - but not to take anything as something to panic about - I have been here for awhile, and remember so many issues that have arisen, taken over the boards for a while, and then calmed down and become simply a part of the conversation. Strep, titer, myco, lyme, immune deficiencies, etc. We are living in a strange time, and it is so hard for us, as parents, to manage our lives that are often torn apart, and to juggle being part time researchers and part time case managers. A little panic seems like the sanest response to what is demanded from us!

 

My strategy is to print anything that makes me perk up and take notice. And then to take some time to think about it.

 

I have a giant (huge!!!) binder with all the ideas I have gathered over time - so many from this site. Then I make a list at the front, of tests or major concepts that I might need to explore at some point. This helps me stay calm and makes me feel like I have options to explore if times get rough again. I wish I'd had all these ideas when she was so sick that I would have tested her for anything! That would have been better than the H&*^ of having no options but accepting a child that changed overnight into a seriously ill, terrified little soul.

 

I have been many "moms" already - that of a normal child, of a child with OCD, of a child with unexplained co-morbid symptoms, of a child with special needs, of a child with PANDAS, and back to the mom of a normal child. I have no idea what the future will bring, but have faith that the work and determination of so many here, will contribute to all our children having answers in the near future.

[PacificMama]

Do children with Lyme disease get Sydenham chorea?

 

Regarding chorea, I just want to say that my daughter dealt with chorea type motor movements. (she is definitive lyme… cdc positive (7 bands) by different means and different labs). At one point after we thought she was “cured” we took her off abx. Some time months later she started presenting again with subtle neuro problems, and then literally woke up one day and was doing what I later found a description to be of the St. Vitus Dance. Which you probably know is what they called the affliction long ago for people who had suffered from rheumatic fever. She would hunch over at the waist, hippity hop several times with her legs – her hands were in a bear claw, and she was doing a repetitive facial grimace. I was floored! We did do immediate strep titer testing (all of it), but negative. She has never had strep in her life, and has always tested neg for titers.

 

So back to the llmd. He has seen the chorea movements before, many times. A nurse who had a child with lyme told me that she did the exact same thing. If you search lymenet, you will again see lots of folks with movement disorder. Or google lyme and chorea.

 

So my daughter went back on a combination of abx. The worst of the chorea resolved in days/couple of weeks. The more subtle symptoms, like facial grimaces, took longer.

 

My daughter was very young when she contracted lyme, and went for a long time untreated. She was then too young to take the cyst busting abx. This bacteria just burrowed in, went dormant, only to rear it’s ugly head down the road. Only neuro symptoms came back – the rest of the physical problems she had were long gone.

 

It gets confusing to me, when distinctions are made (by docs/researchers) to separate SC as it's own "diease" -- if that makes sense. I think of it as just part of the spectrum of neuro disorder (I guess specifically basal ganglia disorder) usually caused by bacterial infection. Most often associated with strep, but obviously other infections as well. What I mean is, the chorea movments are simply an extreme form of the same symptom set that most people here are dealing with.

[PhillyPA]

What about fear of choking and spitting out your food? That is a big PANDAS symptom. Does Lyme disease have this symptom? I am trying to find a difference in symptoms...

[P_Mom]

What about fear of choking and spitting out your food? That is a big PANDAS symptom. Does Lyme disease have this symptom? I am trying to find a difference in symptoms...

 

 

PhillyPA,

 

You are not going to find a difference in symptoms, no matter how hard you look. Lyme can involve ANY symptom you can think of! PANDAS symptoms are also kinda of broad but nowhere near as broad as Lyme symptoms.

However, there are big PANDAS symptoms, and, big Lyme symptoms...

 

The biggies for PANDAS (as you know) are sudden onset OCD (broad manifestations), tics, ADHD behavior, anorexia, rage, anxiety, handwriting and math deterioration.

 

 

Lyme biggies are a tick bite, bull's eye rash followed by a flu-like illness, then slowly evolving and eventually showing up as meningitis, cranial nerve problems (bell's palsy, etc), heart block, Lyme arthritis, headaches. But, like I said, check Lyme symptoms and you will find everything there. These are just some of the most diagnostic that I could think of off the top of my head.

[PacificMama]

What about fear of choking and spitting out your food? That is a big PANDAS symptom. Does Lyme disease have this symptom? I am trying to find a difference in symptoms...

 

Yes, found in lyme. I guess simplest way to put it would be to say that every PANDAS symtom is also a lyme symptom. BUT not every lyme symptom is a PANDAS symptom. General difference would be the physical manifestations of lyme or other related pathogen. Tick borne diseases can be multi-systemic -- not something found in strep.

 

Again, it's important to clarify that a person infected with lyme may only present with the neuro problems (no physical). And so that person could look very much like what you would call the typical PANDAS patient.

 

An experienced lyme doctor, using lab work and very thorough examination, would be able to help distinguish the difference. And ultimately, if deemed appropriate, a trial course of properly prescribed combination of abx would provide further evidence of these infections. That is to say, a person with active pathogenic infection will respond very differently than a person who is dealing with only strep. These responses provide additional diagnostic evidence, and help to further refine the diagnosis.

[PhillyPA]

What about checking this forums over and over again throughout the day? What is that a symptom of?

 

I am making myself crazy. I am getting off this computer and going to fold the mounds of laundry piling up on my kitchen table.