PacificMama

PhillyPA, I did not previously realize that one of your children was given an autism diagnosis. I have written some things in another post today that may be of interest to you. But mostly I just wanted to say that I wish you the best in finding the answers for your child. Mary

These are all very good questions. But probably none of us “lyme parents” here can do justice in giving you information (on making some sort of differential diagnosis between lyme/other and pandas). However, there are excellent doctors who can, and do, provide this information. And a multitude of published information. At the risk of saying this again, as so many others have done, but yesterday’s ILADS presentations (that streamed video live) were made by doctors teaching other doctors in the audience how to do a clinical evaluation of a suspected lyme (or other pathogen) patient, and how they perform the differential diagnosis for these diseases using history, lab work and physical exam. They went into excruciating detail about symptoms, lab work, subtle signs and big signs. They are the best of the best, and they are not pulling diagnoses out of thin air. They provided a monumental amount of information about these infections. And key to the treatment is specific and tailored combination of abx, based uniquely on each patient's situation. But the big takeaway is this: nearly every single doctor talked of the multi-infectious patient. They said over and over things like “cascade of illness”, “domino effect of disease”. They were nearly all preaching that rarely do these infectious patients exist with only one bacterial or viral infection. Many of them talked about strep and Pandas. They talked about the mycoplasmas! All of them – the myco p’s, the myco fermentens. They talked of opportunistic viruses taking hold like the herpes viruses and Chlamydia, ebv. There are fungal infections. Yeast. Allergies. Lots of talk about autoimmunity!!! Infectious triggered autism came up several times. Nobody talked about lyme in a bubble. Let’s forget the labels for a moment. Chronic infectious disease – bacterial or viral – is going to give a UNIQUE DISEASE EXPERIENCE to every single person. You need a doctor who is going to approach you with this understanding. It truly is an onion to be peeled away. Some people’s onion only has a layer or two. And some people’s onion has many, many more. Dr. Corson has been used as an example here because, in my opinion, she gave as a**-kicking presentation on these infectious diseases in children – with lots of compassion and understanding. And for all you Pennsylvania people (where she practices), she had lots of specific information about the presentation of these infections in PA (and bordering states). Which as most of you know, is ranked right up there at the top of the list for cdc reporting of tick borne diseases. She took CHOP to task several times (although not by name!). She did talk about strep and pandas. For anyone who did not watch these presentations, I would strongly urge you to. NOT because I’m telling anyone they have lyme! But because these doctors go into such amazing detail about evaluating for many, many diseases that might play a role in your child’s illness. If your child is not making the progress you think he/she should with your current treatments, please consider that more infections/viruses may be involved. Here is a link to order, the two I would most recommend would be Dr. Corson and Dr. Horowitz (as his was quite comprehensive on many bacterial and viral infections, and was especially of interest to anyone on the east coast as he gave lots of detail). http://www.tfaforms.com/180790

I've got to take off, so I won't be able to see the last presentation today. But I do plan on getting dvd. I loved Dr. Corson. and was really impressed with Dr. Harris and Dr. Horowitz presentations also. I'm always amazed at the complexity of these diseases... especially when found in combination. Glad there are doctors out there who understand them! Look forward to hearing what you all thought. Mary

I think this is where I'd have to absolutely defer to a lyme doctor to give you that answer. It is frustrating, but infectious disease illness is a unique experience for each person. How long one person may tolerate steroids would be quite different from another. I keep saying this, but soooooooooo many individual factors come in to play. Sorry I can't be more helpful. Mary

I just want to add that while I appreciate that there might be a lot of diagnostic confusion that goes on amongs us here, I just have to put in the word that most of these lyme doctors are very, very skilled and have the training, expertise and clinical experience to diagnose people infected with lyme and other infectious pathogens.

Not true. Herx not necessary. Not true. Not true. Lyme is often dramatic and sudden onset. It can also slowly creep. I think the most important thing to understand is that these infectious diseases produce unique disease experience for each individual. Sooooooooooo many factors come into play.

Karen, Not sure if you got a chance to read this thread on lyme and steroids: http://www.latitudes.org/forums/index.php?showtopic=10368 The idea is that yes, some lyme positive people can see some immediate improvement with steroids -- because it is likely addressing inflammation that is present. (and some lyme people who take steroids with see no benefit, or will see terrible reaction... just so individual). HOWEVER, in the long run steroids are most definitely harmful in that they supress the immune system and allow any pathogen to get the upper hand, so to speak. hope that helps Mary

Never IVIG for my daughter.

For anyone interested, here is the link to today's ILADS confernece streaming video link. *there are some sessions regarding neuropsych dysfunction, and other neuro or pediatric sessions that people may find helpful. http://ilads.org/lym...tml#page=page-1 Just a reminder... this conference is for medical professionals to share and learn more about tick borne diseases -- research, testing, treatment. Here is today's televised schedule. There will be more this weekend. This is not the complete presentation... just what they are broadcasting live. You would be able to purchase a dvd afterward of the complete conference. Also as a reminder, this year they are doing a dedicated track to neuropsych/brain dysfunction and tbd's. Introduction to the Lyme & Associated Diseases Society Annual Conference5:00 AM - 5:30 AM [8:00 AM - 8:30 AM eastern] Welcome: Introduction to "The Decade of the Microbe" by Robert C. Bransfield, MD, Welcome: Is Chronic Lyme Really MCIDS? Future directions in education with ILADS by Richard I. Horowitz, MD, Welcome: Lyme Parity by 2012 by David C. Martz, MD Brief History of Lyme disease by Joseph J. Burrascano, Jr. MD5:30 AM - 6:30 AM [8:30 AM - 9:30 AM eastern]This session will discuss a brief history of Lyme disease, clinical presentations of Lyme disease, clinical syndromes impacting the heart, dermatology, CNS, joints, eyes. Corresponding appropriate studies on persistence will be discussed along with transmission. There will be discussion of the thirty eight question questionnaire in clinical practice, issue with diet, vitamins and probiotics Treatment Options by Steven Harris, MD6:15 AM - 7:15 AM [9:15 AM - 10:15 AM eastern]This session will discuss a variety of treatment options including rotation of antibiotics, including IM, IV, PO with names and side effects, medication for symptom relief when antibiotics do not work. Dr. Harris will discuss the role of alternative therapies and endocrine abnormalities seen with Lyme. Basic Psychiatric Lyme by Robert C. Bransfield, MD7:30 AM - 8:30 AM [10:30 AM - 11:30 AM eastern]This session will discuss psychiatric manifestations of Lyme. This includes pathophysiology, differential diagnosis and treatment. Also Dr. Bransfield will address practical suggestions for practitioners regarding psychiatric drugs for depression, anxiety, sleep, memory and wakefulness among others Neuro I by Kenneth Liegner, MD8:15 AM - 8:45 AM [11:15 AM - 11:45 AM eastern]General considerations in assessment of persons with possible Lyme borreliosis (and other borrelioses) and other transmissible co-infections which may involve the nervous system. Neuro II by David Martz, MD8:40 AM - 9:40 AM [11:40 AM - 12:40 PM eastern]This session will discuss specific syndromes like ALS, MS, Parkinsons Disease, Dementia, Peripheral Neuropathy, and potential treatment regimens Co-Infections by Richard I. Horowitz, MD10:30 AM - 11:30 AM [1:30 PM - 2:30 PM eastern]Chronic Lyme Disease: Issues with lab testing, treatment protocols, and differential diagnosis will be discussed in the chronic resistant patient. Rheumatology by Andrea Gaito, MD11:15 AM - 12:15 PM [2:15 PM - 3:15 PM eastern] This session will discuss rheumatology issues in the Lyme patient with an emphasis on ordering tests, interpretation, treatment, and issue of autoimmunity Pediatric Lyme by Ann F. Corson, MD12:30 PM - 1:30 PM [3:30PM - 4:30 PM eastern]This session will discuss how clinical syndromes differ in children. It will offer common antibiotic regimens in children Treatment Trials by Elizabeth Maloney, MD1:15 PM - 2:15 PM [4:15 PM - 5:15 PM eastern]This program will review early and late Lyme treatment trials. 0

Here is the link to today's ILADS confernece streaming video link. http://ilads.org/lyme_programs/lyme_events_video.html#page=page-1 Just a reminder... this conference is for medical professionals to share and learn more about tick borne diseases -- research, testing, treatment. Here is today's televised schedule. There will be more this weekend. This is not the complete presentation... just what they are broadcasting live. You would be able to purchase a dvd afterward of the complete conference. Also as a reminder, this year they are doing a dedicated track to neuropsych/brain dysfunction and tbd's. Introduction to the Lyme & Associated Diseases Society Annual Conference5:00 AM - 5:30 AM [8:00 AM - 8:30 AM eastern] Welcome: Introduction to "The Decade of the Microbe" by Robert C. Bransfield, MD, Welcome: Is Chronic Lyme Really MCIDS? Future directions in education with ILADS by Richard I. Horowitz, MD, Welcome: Lyme Parity by 2012 by David C. Martz, MD Brief History of Lyme disease by Joseph J. Burrascano, Jr. MD5:30 AM - 6:30 AM [8:30 AM - 9:30 AM eastern] This session will discuss a brief history of Lyme disease, clinical presentations of Lyme disease, clinical syndromes impacting the heart, dermatology, CNS, joints, eyes. Corresponding appropriate studies on persistence will be discussed along with transmission. There will be discussion of the thirty eight question questionnaire in clinical practice, issue with diet, vitamins and probiotics Treatment Options by Steven Harris, MD6:15 AM - 7:15 AM [9:15 AM - 10:15 AM eastern] This session will discuss a variety of treatment options including rotation of antibiotics, including IM, IV, PO with names and side effects, medication for symptom relief when antibiotics do not work. Dr. Harris will discuss the role of alternative therapies and endocrine abnormalities seen with Lyme. Basic Psychiatric Lyme by Robert C. Bransfield, MD7:30 AM - 8:30 AM [10:30 AM - 11:30 AM eastern] This session will discuss psychiatric manifestations of Lyme. This includes pathophysiology, differential diagnosis and treatment. Also Dr. Bransfield will address practical suggestions for practitioners regarding psychiatric drugs for depression, anxiety, sleep, memory and wakefulness among others Neuro I by Kenneth Liegner, MD8:15 AM - 8:45 AM [11:15 AM - 11:45 AM eastern] General considerations in assessment of persons with possible Lyme borreliosis (and other borrelioses) and other transmissible co-infections which may involve the nervous system. Neuro II by David Martz, MD8:40 AM - 9:40 AM [11:40 AM - 12:40 PM eastern] This session will discuss specific syndromes like ALS, MS, Parkinsons Disease, Dementia, Peripheral Neuropathy, and potential treatment regimens Co-Infections by Richard I. Horowitz, MD10:30 AM - 11:30 AM [1:30 PM - 2:30 PM eastern] Chronic Lyme Disease: Issues with lab testing, treatment protocols, and differential diagnosis will be discussed in the chronic resistant patient. Rheumatology by Andrea Gaito, MD11:15 AM - 12:15 PM [2:15 PM - 3:15 PM eastern] This session will discuss rheumatology issues in the Lyme patient with an emphasis on ordering tests, interpretation, treatment, and issue of autoimmunity Pediatric Lyme by Ann F. Corson, MD12:30 PM - 1:30 PM [3:30PM - 4:30 PM eastern] This session will discuss how clinical syndromes differ in children. It will offer common antibiotic regimens in children Treatment Trials by Elizabeth Maloney, MD1:15 PM - 2:15 PM [4:15 PM - 5:15 PM eastern] This program will review early and late Lyme treatment trials.

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.

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.

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

Sounds like your gut is telling you that you are on a path that is providing results. If Dr. Fallon has run labs for, and evaluated for, all the possibilites concerning your son -- then perhaps you feel like you can set these possibilities aside. I do not know the particulars, but it sounds like he is telling you that none of these infections might play a role (again, I'm just assuming that they were all tested and evaluated for). The great thing for all of us is, we can always re-evaluate and adjust in the future based on new research, new symptoms, new knowledge, etc. There are not too many here who have traveled a straight and narrow path in healing our children. Sincerely wish your family the best. Mary

Mary, Can you help me understand this? I thought the word from the NIMH meeting was that different infectious triggers to OCD/Tics/ADHD were acknowledged. It sounds to me like you are saying Lyme is synonymous with PITAND?? Myco-p is a bacterial infection like strep, but not from a tick. Haven't most been infected by myco-p before they get out of childhood? Reading all these info is so confusing. It sounds like ALL kids have had the "infections associated with Lyme/PITAND" but most children's bodies can process the infection and others (OUR KIDS) develop neuro-psychiatric symptoms. So doesn't that come back to the auto-immune issue rather than the X, Y, Z infection antecedent? First, I'll clarify that I was referring to Mycloplasma Fermentens (not myco P). There are various types of mycoplasmas... Fermentens is one that can be vector borne and often found in patients infected with borrelia. I know lots of folks here talk about myco p -- it seems that it is yet another infection found amongst people here. But no, it is not vector borne that I know of. Yes, it is confusing. And much more research needs to, and will be done. But yes, I would agree that there seems to be something about our kids that makes them susceptible to the effects of these infections. Autoimmunity plays a role, and lots of research is going on in that area. It was discussed yesterday in the DC forum. I can only clarify that with lyme, the actual bacteria itself -- harbored in the CNS -- will cause the neuropsych symptoms. But it is confusing, because lyme can also create autoimmune reactions. Again, this has been and continues to be researched to better understand. Usually, a cleared infection clears the symptoms and any autoimmunity. Mary

Hi, I kind of have a question here.I'm thinking if the lyme test was negative, and you are saying that if your child's symptoms are not resolving, to ask opinion again....why would you assume it is lyme? I am guessing this parent has a child initially diagnosed with Pandas, or at least tourettes or something else? I'm just wondering why you would think it must be lyme, no matter what the results of testing is. Faith, please. Nowhere in my answer did I assume PhillyPA's son had lyme. Dr. Fallon is with Columbia University, and is a renowned physician researching and treating infectious-disease based neuropsych problems. He is incredibly knowledgeable about all the various infectious diseases that can create these problems. Since PhillyPA has seen him in the past, I simply said if it were me, I'd go back with an update on my son's condition and ask for his updated opinion. Period. I don't know how long it's been, or if her son's symptoms have evolved since she last saw Dr. Fallon. This information is relevant. If he still gave the same opinion, I think she can rest assured it's not infectious disease based. But speaking generally, as per the CDC, lyme is a clinical diagnosis. Because the current testing is flawed in that it does not have the sensitivity to pick up the presence of lyme bacteria in all cases, a patient must always be evaluated based on symptoms. Testing is great, and it oftentimes helps, but a "negative" lyme test doesn't mean you don't have it. Again, see my post on the gathering of scientists and researchers from across the country who are meeting in DC this week to discuss the state of tick borne diseases. I assure you, they would all like to come up with reliable testing just as much as the rest of us.

Since Dr. Fallon is one of the most respected lyme experts, of course the instinct is to tell you to trust his judgement. I don't know how long ago your son was evaluated, and if all possible infections were tested for. But if it were me, and my son was still not resolving his symptoms, I would get a hold of Dr. Fallon again and essentially ask him to confirm whether this would still be his opinion. I don't know if your son's symptoms have evolved since his last visit with Dr. Fallon. Mary

Classic Panadas presentation can be the same as lyme/other presentation. But lyme is very complex, and can also present differently. I am going to assume that by pandas, you mean strep and only strep present. Lyme can look the same as pandas. But lyme/other is incredibly complex pathogen, and can present with a much more varied symptom list. It can then essentially disable an immune system allowing other non-tick borne diseases to take hold. I personally never say "lyme AND pandas". At it's core, it is lyme/other infection that is the root. Once it is cleared, or if it was initially cleared, the symptoms you know as pandas would go away. Lyme doctors usually don't refer to PANDAS. They just refer to these neuropsych symptoms as just that, another symptom. On that note, I want to add that if you go to the lyme boards, you see tons and tons of people who talk about their neruopsych symptoms. They are clueless to the term PANDAS. All they know is that they have one or more of these tick borne infections and they cause the neuro symptoms. Hope that helps! Mary

Yes, it can be a symptom -- just part of the whole spectrum of neuro symptoms. I think anybody here who has had definitive exposure to lyme endemic areas should most certainly test for these infections. Mary

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.

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

Wendy, Thanks for the update. It's good that they know about the bartonella. I remember reading something by one of the more prominent lyme researchers that he feels it's more common than borrelia. Could be because there are more confirmed modes of transmission (animal scratches, bites, fleas, head lice in addition to ticks). Hope they continue to find progress in their journey. Mary

Thanks for posting... this is an excellent 101 for people.

Nancy, Agree with all that has been posted by others. Glad to hear that you are beginning to find some answers. I did want to add that some of these more prominent lyme docs have very long wait times for initial new appointment visits, so you will want to start calling around as soon as possible. Some of them are more expensive than others. It may seem alarming at first, but people need to consider what you will gain with that initial 2-3 hour consultation. They are incredibly thorough evaluations, and it's amazing the care and attention that is paid to your child. It's not cheap, but it can save you years and years of heartache, pain, and money spent in the wrong direction. You are fortunate to at least have your appointment with Dr. B this week to get started on something hopefully. And as has been posted, you can actually watch streaming video of the ILADS conference this Friday thru Sunday -- which should be very helpful. See the other link for ILADS Conference. Also, if you do get confirmation for lyme/other, please remember to report back to Dr. Cunningham. Best wishes. Mary

thanks for the link. I just watched Pamela Weintraub's presentation... it was great. For anyone who'd like to view it, you can click on the above link -- she begins just after the 43:00 mark.