PacificMama

Hi Jodie, OK, that's good that Dr. J knows all of the meds your son is taking... just wanted to confirm that. I agree with lyme mom in that I don't have any recollection of the fatigue "test", in differentiating between herx and reaction. I would say my daughter had some fatigue during herxes, but never so much that it was greatly noticeable. I could just tell that she needed a bit more sleep on those days, and we kept our schedule as stress free as possible. (But we did try and keep up with some physical activity too... it's important to keep things circulating). Herxes are tough, and we gave lots of extra TLC during this time, and let a lot of things go too. The symptoms sound like a herx, in that you are saying it's an exacerbation of symptoms, with some possible new similar symptoms? Also, mood liability and anxiety during a herx is very common. It seems to me that a reaction would be quite different. However, I absolutely am not able to make any sort of judgement about this for you -- which is why it is imperative that you keep in the loop with Dr. Jones. Here is how I always handled my contact with the office when I had questions. I would compose a fax, memo style (to, from, phone contact, date, subject). I would keep it as short, clear and simple as possible. First summarizing things (such as diagnosis, when treatment began, etc). Then list current meds. Then clearly list out your question, and what you are trying to have answered. They will put this in front of Dr. Jones and it makes it easy for him to answer -- and nothing is misinterpreted. They will then call you back. This also leaves me with a record of contact and issues that have come up. I can always look back over my fax copies to see what's come up in the past. Regarding red dye, has this been an issue in the past in that you've seen an obvious, immediate effect? I would first clarify with Dr. Jones what he wants you to do, via fax where you list all the meds and situation, etc. He really has a great deal of experience with this, so I do trust his judgement. For our own situation, he has always been correct when telling us to start or stop something (and there were definitely times where I went on faith in following his instructions as I was scared too. but it always worked out). However, you are the mom... trust your intuition. If after Dr. Jones comments, maybe you still feel the need to consult Dr. B. Maybe the two docs could consult too. keep us posted.

Jodie, Do you just have one doctor who is doing the prescribing for all three abx? (Just trying to clarify because your post sounds like one doctor has diagnosed pandas and prescribed augmentin, and then there are the bart meds from another?).

Yes, it's significant to know both results. The IGM result is an early response to the infection. The IGG response comes later. As to Michael's comments, he's correct in that it is best for you to have any result interpreted by a lyme expert, as it will be viewed in conjunction with symptoms. Which is really the most important thing. In my opinion, I would not make hard and fast treatment decisions until this time. Can't remember, are you already lined up waiting for an appointment with llmd?

Pandas, Just to clarify, you would have been given 2 sets of results: one for IGG and one for IGM. They appear on two different pages (or that's how ours come). Did you get these same results for both igg and igm?

Smartyjones, I agree with everything you have written... well said. (and especially agree with some sort of protocol for testing/considering that there may be many possible infections that lead to these symptoms. I would personally like to see when a newcomer arrives to the board, that they are alerted to this fact right off the bat).

I think you make a very important point here, EAMom, and it really resonates with me. I agree... that is possible. However, I would still offer that a doctor experienced in treating lyme -- and other similar infections -- would be able to ascertain when another infection is involved (as opposed to strep alone). These doctors are pretty skilled in picking up on other symptoms that would not be caused by strep.

All these infections/labels don't go so neatly into their own little box. What most people here have in common is the idea that some sort of infectious agent or agents are causing neurological symptoms. And for some, it is the active infection causing the symptoms. And for others, the original infectious agent created an autoimmune problem. (and for some, it's both!) It might only be strep induced. OR, as many are finding out, there are other underlying infections at play (lyme, myco, bart, etc). We're talking about immune dysfunction. It doesn't always fit to draw a hard line around a particular trigger. EVERYONE, the docs and researchers too, are still learning. What makes these kids so susceptible? Genetic predisposition? Environmental exposures? The introduction of infectious agents, that they can not process (when the healthy immune systems of others can)? All coming together to create neuro dysfunction in very individualized and unique presentations for each person.

Hi Philamom, I've got a 3rd grade girl too, who has sadly had to battle lyme as well. Here is a link to articles/brochures from Lyme Disease Association regarding lyme in schools. I think the ABC's of lyme is meant to educate teachers, etc. http://www.lymediseaseassociation.org/index.php?option=com_content&view=category&id=12&Itemid=502 Here is a link discussing a new (2010) book: The National Association of School Psychologists joins the growing number of professionals who recognize the devastating and far reaching impact of Lyme Disease in the nation's children. In the 2010 publication Pediatric Disorders; Current Topics for Interventions and Educators, authors Paul McCabe and Steven Shaw have devoted an entire chapter to this critical topic. Chapter 10, entitled Lyme Disease and Tick-Borne Infection; Causes and Physical and Neuropsychological Effects in Children by Ron Hamlen and Deborah Kliman, indicates the important and often missed link between behavioral/cognitive changes and Tick-Born Infection. And here is a link specific to PA, but has good links for everyone with kids: Lyme in PA 101: Knowledge is power. Where can teachers and parents learn about Lyme Disease? http://www.examiner.com/early-childhood-education-in-scranton/lyme-pa-101-knowledge-is-power-where-can-teachers-and-parents-learn-about-lyme-disease Hope that helps! Mary

Emerson, What did the Texas lyme association advise you to do as far as finding a doctor?

I'm going to suggest that you widen your circle of consideration, and get your son(s) evaluated for other infectious diseases that may be playing a role here -- such as mycoplasma, lyme, and other similar infections. Leg pain, and migrating pain, are hallmark symptoms of lyme. So I would advise that it at least needs to be considered and tested for (by a knowledgeable doctor). By the way, increased markers for inflamation are not necessary for lyme to be present. If you want more information -- you could post over on the lyme section of the Latitudes board. Mary

Hi Justine, I hate for you to go off the abx unless your doctor tells you to, or you really feel it's too much for your son. It unfortunately is just something that has to be gone through. But yes, still call your doctor. My daughter would have some low-grade fever at times. I normally don't treat fever (as it's body's appropriate reaction), but certainly give some motrin or something to make him more comfortable. It can help a lot. (I never give tylenol -- I think it's worthless). NewBeginnings advice re detox is good. My caution is to go mild and short duration for epson bath, until you see your son's reaction. Epson baths tended to draw out my daughters symptoms and made it worse. Perhaps just try an epson foot bath. Also, good old fashioned movement! This is usually easy for kids. I get my daughter as much exercise as possible (of course what I mean is exercise that would be normal kid stuff). I know it's harder when they don't feel well, but anything is better than nothing. Keep us posted. Mary

Hi Jodie, I posted to your message last night... but don't see it today. I just wanted to say that's great news that you have found some answers and are on the path to recovery with your son. Dr Jones does such a thorough exam, and can find the most nuanced symptoms (of course he knows what he is looking for). Best of luck, and keep us posted. Mary

As others have said, researchers have definitely cultured borrelia bacteria/spirochetes in other vectors such as fleas and mosquitos. The question is, are they actually able to transmit the bacteria to humans? Not proven yet. It sure seems likely to me, since they transmit so much other disease. And it would sure explain a lot. The two llmd's that I have asked this question gave a resounding "yes!". They just believe that it has progressed to the point where this is happening.

I don't think we've ever received advice re dental cleaning. However, severe dental pain was one of the earliest, and most prominent symptoms my daughter had. I subsequently found out that this is a very common lyme symptom. I also believe that the spirochetes can really take hold in the mouth cavity. I have read assorted things about this, but can't remember them all right now. There was a dentist who used to post (still does?) on lymenet as he himself had lyme. And so he had all sorts of dental related research to add to the "conversation". Maybe call your doc and ask?

Not sure if you mean that this abx protocol is new (but he has been on other abx in the past?). There is a good chance this is herxing. But I always tell people to call their doctor and report symptoms, and let them give the opinion (as there are sometimes allergic reactions too... but these usually happen quite quickly). We have always stayed the course through a herx, which is usually what they want you to do. There was an occassion or two where we'd stop the abx for 3 days to see what would happen (per doctor's orders), and then get back on if symptoms backed off (they knew it was herx). Herxes aren't usually too bad for too long... I would hope you would see some relief next week. There was only one time, when we started Tindamax (a cyst buster), that we had to completely stop for a few months. It just was too tough for my daughter. The cyst busters can be wicked. Anyway, we started back up 3 months later and while she had herxing, it was manageable. Also, herxes can cycle. But they are less painful each time. But please, call you doctor just to keep them in the loop.

My dd (now 8) positive for lyme at age 3 via Igenex (7 bands total), labcorp, and another lab (MDL I think). Indeterminate to mildly positive for Bartonella, but was always treated as if she had it (had some symptoms for it as well). I'm awaiting test results for my younger (5) dd as well. Needing to rule it out, as she is mildly symptomatic of something.

My first answer would be "yes" and "no", in hallmarks that may differentiate. For some with only neuro symptoms, the symptoms can be identical, and can appear to be triggered (and actually are) by strep or some other illness. For most others, there is clearly other symptoms that are not seen with PANDAS. But I would say mostly yes, an experienced clinician would be able to differentiate the symptoms with a good thorough history taking, lab work, exam, etc. An extensive lyme symptom list is here: http://www.canlyme.com/patsymptoms.html Two quick points: In lyme, symptoms are most often due to active infection, but sometimes there also is an autoimmune component that is triggered (similar to the autoimmune component triggered by strep). That is why high camK, and auotanibodies positive of the Cunningham test can be due to infections other than strep. While some may say us lyme folks have told peole they are dealing with lyme, I'm fairly certain I've never done that. And I'm certainly not going to do it here. All I believe any of us have tried to do is suggest that a whole lot of us are probably dealing with multi-infectious agents. Borrelia (lyme), myco, and other similar pathogens are a large and growing problem. I will always suggest going to see a LLMD (lyme literate doctor). Not because they only "do" lyme, but because THEY ARE VERY SKILLED AT DEALING WITH MULTI-INFECTOIUS PATIENTS. They will run the labs. They will do the thorough history. They will do the 2-3 hour initial exam. They will not think you are crazy. They will respect you. And if you need it, they will prescribe the care you need (be it abx, or whatever). These people are just doctors. Even though they specialize in lyme, many do treat other medical problems as well. I say if your child is clearly responsive to abx (with a herx and/or significant improvement), then it is worth considering that you may be dealing with an actual active infectious agent. And so in that regard, you might want to consider seeing a doctor experienced in this area. You might think that would be an infectious disease doctor, but as most lyme/co folks will tell you, they are surpisingly unreceptive to your symptoms. And so that is why a llmd is recommended (which may indeed by an ID doc, or just a GP or a ped... but they have the llmd training). Also, and I'm sorry if I've got this wrong, but have you also mentioned that at some time your daughter was given an autism diagnosis? Again, I apologize if that's not correct. If so, you may want to check out the organization Lyme Induced Autism. NOT because I'm saying it's lyme. But because it is a group of parents, docs, etc. that believe that infectious agents are at the heart of many autism diagnosis. They put on an amazing conference each year. If it's of interest to read up on symptoms and stories, here is the link. Many parents have seen wonderful healing of autistic symptoms by treating underlying infections. http://www.lymeinducedautism.com/home.html Best of luck. Mary

P. Mom and Faith, Seriously, you’re all atwitter about what? Read my post again. My whole point is “why is P. Mom degrading a doctor she knows nothing about, and has no experience with?” Why research a doctor you have no intention of seeing? Why put him down on this forum? How strange and sad. That’s like me coming on here and trashing Dr. L, when I have absolutely no experience with her whatsoever. And as for why you are bringing up Igenix test resuts and all the rest, I have not a clue -- as none of it was mentioned in my post. Let’s review: it was a post about an incredibly dedicated and caring doctor, who spends nearly every waking moment dedicated to helping kids. After all you have witnessed from parents here, I’m just still confounded about the need to denigrate him. I hope for all your sakes, that when the medical boards get wind of Pandas doctors prescribing long term antibiotics, the doctors will have half the courage of Dr. Jones (and other dedicated llmd’s) to stand them down in the face of threats to pull their medical license. Because the majority of doctors cave under pressure.

P mom, Why are you only posting on lyme topics? Why are you researching Dr. Jones? Really – why do you feel the need to denigrate a doctor who has devoted his life to helping kids? Quite frankly, with all your research you apparently know next to nothing when it comes to Dr. Jones. (I guess there's no nurses and medical assistants and office staff to pay, no rent to cough up, no insurance premiums to fork over, and on and on). It'd be sweet for you to take a little train trip up to see Dr. Jones in CT… you might be surprised at the humble (and that's being kind) medical office he occupies. And you might be even more surprised to find him living with his daughter and grandson in a very modest apartment above his medical practice. But most surprising, perhaps, are the people you might meet in his waiting room. I can assure you, they are anything but wealthy. He works 6 full days a week seeing patients, and spends nearly a full seventh day catching up on files and doing phone consults. Do you know how many kids he helps for FREE or reduced fee?! Do you have a clue what it takes to run a medical practice these days – let alone a lyme practice where the medical board is breathing down these doctors neck every second? Dr. Jones staff is AMAZING! They are there for us day or night. They will always return my phone calls and faxes, and have helped us though untold emergencies immediately. He deals with the sickest of sick kids. Every day, in addition to his visiting patients, he is called upon repeatedly to consult with other physicians attending to lyme patients – many times in very critical scenarios. Patients (lots of them!) are calling constantly, with all sorts of problems or emergencies, and he or his staff reply to or handle all of the calls! And one of his staff ends up spending a huge portion of her time just helping parents by writing them letters, and walking them through the process, so they can get the IEP's they need for school. Parents call all day long, BEGGING for help, and they get it. Money is tight for us too, but the fees I have paid to Dr. Jones' practice are the best bargain I've ever laid out for. We would be in a world of pain and despair without his (and his staff's) care for our daughter – REPEATEDLY coming to our aid every time we needed it (no charge!).

This is not correct. I'm not sure exactly what the first appointment fee is, as we have only been paying follow up fees for some time. But it can't be anywhere near this amount. Perhaps someone who has scheduled a first appointment recently can verify what they have paid. Maybe you said $1500 because you are including the cost of lab work? I can tell you that the two hours he spends with you for initial visit are the most thorough two hours you will ever have with a doctor. Dr. Jones has always done phone consults. Of course, you have to be a patient of his first before he will consult over the phone.

Emerson, Please contact the Texas Lyme Disease Association: http://www.txlda.org/index.htm They will help you sort through this, and help you find a doctor who can appropriately test and examine you. fyi... There are support organizations in nearly every state... simply google the name of your state, along with "lyme disease association". Good luck. Mary

P Mom, Let's agree to call it a day. Sounds like you have a vacation to look forward to, and I'm sure there are many folks here who are ready for a cease fire. I'm sorry for your troubles with your own health. The truth is, it gets very convoluted once the body in under attack by microbes -- bacteria and viruses are found so often in multiples. And then there is the chicken and egg... which came first? The lyme boards are full of people dealing with multiple infections and viruses. I have read what you have posted in this thread about your experience. (although I am still unclear if you have had igenex done on yourself?). I hope you have a good doc to help you sort it out. Since you had the positive test, it's possible you did indeed have the lyme, coupled with EBV, and potentially other co-infections which leave you with unresolved symptoms. Or, maybe it's just EBV all alone. I think, if you were interested, that Igenex could explain how your EBV might factor in if you are going ahead with the test. I believe they also have some way of cross-confirming this or something. Have you ever tested for the common co-infections? All I've tried to say on this board is to use tests, and good docs, to rule in or out multiple infections... as they are so prevalent. NOT TRYING TO STEER YOU DOWN THE PATH OF LYME... just saying that it can get very confusing and complicated. Best. Mary

This is completely wrong on so many levels, and incredibly reckless of you to say. My goodness, nearly any lyme doctor or lab could set the record straight. There can be no false positives if only Borrelia burgdorferi genus specific antibodies are considered on the Western Blot – those are bands 18 23 30 31 34 37 39 83 and 93. Only ONE of these is needed to confirm presence of borrelia bacteria. Additionally, there are five nonspecific cross-reacting antibodies in the Western Blot : 28 41 45 58 and 66. CDC, for reporting purposes only, says you must have 5 bands positive. In the unlikely event you happen to have the 5 non-specific bands only turn positive, then you MAY indeed have a false positive. A Lyme educated doctor may consider that only ONE of the borrelia specific bands, combined with a clinical picture of symptoms, to be a positive – as THESE ANTIBODIES ARE SPECIFIC ONLY TO BORRELIA BACTERIA. The problem is sadly not false positives, but that there are so many barriers to accurately detect the presence of the bacteria in the first place. But if it is indeed detected by a borrelia specific band, then there is no question that it is borrelia and nothing else. Sorry I don’t remember ever seeing the question of pandas creating false positives in one of your posts, but of course just because someone on this board didn’t give you a response doesn’t mean that there isn’t a response. I mean it’s just silly for you to say that you don’t know what antibodies are involved in PANDAS, but yet say that they may cross react on the lyme western blot – for which the bacterial composition has been mapped extensively. No, quite frankly, it doesn’t seem coincidental that these kids are turning up with lyme. Lyme is incredibly prevalent, with an estimated new 100,000 cases each year. Why would it be strange that people with symptoms of lyme actually turn out to have lyme? Lyme can present with bullseye rash, and without. Sudden onslaught overnight, or slow-creeping symptoms -- or any combination of both. There are many strains of the bacteria, meeting up with unique immune systems – which equals a highly individualized case for each individual. ( and Both the llmd's I spoke with last week feel positive it is transmitted not just by ticks, but by fleas and mosquitos as well. And to address your earlier post, congenital lyme being passed to unborn children is a sad and documented reality. Sexual transmission is suspected. Does it mean it always happens? No, of course not. I really do not know why you are so defensive and hostile to the lyme posting here. It almost borders on being cruel. But if it bothers you so much, wouldn’t it be better if you just skipped over it?

Could you please state what specific PANDAS antibodies cross react with lyme testing? And the source for this. thanks.