PacificMama

Like Wendy, most people here are well intentioned parents who only hope to help their children, and maybe along the way help other parents do the same. A public flogging seems a little harsh. I admire Wendy's honesty in saying: I'm constantly learning... it's an evolution. I'm sorry that some people are sick of the lyme postings. All any of the lyme parents wanted to say was "consider there may be other infections involved, so please take the time to rule them out, or rule them in". Wendy, regardless of how things play out for your family, know that you have helped many people here. Mary

I guess Sheila or someone would have to clarify what the intent of the new lyme forum is. Since latitudes is a source of information for neuro dysfunction of a certain type, I'm assuming that she is limiting the topic to that area. If so, then I don't understand why lyme would have to be set aside in a separate forum, as I was under the impression that the PANDAS/PITAND forum was for people who were dealing with neuro dysfunction that was infectious triggered -- whatever the infection. I would not imagine it would be a general lyme forum, as many many good ones already exist. If people here have lyme questions that are not neuro related, they could PM offline, or go to one of the many lyme boards that exist. There are many people here that have found out they are ultimately dealing with lyme, who NEVER would have guessed it. If lyme was set aside separately, they would likely continue to disregard it. As to the question of whether there are other lyme parents who are familiar with PANDAS/PITAND, I would say absolutely they are because many of them are dealing with this neuro dysfunction every day. However, I doubt that more than a few of them would have heard of the term PITAND or PANDAS. I have to bang my head on the table a bit about the term "PANDAS" symptoms. As these types of neuro problems have long been identified as possibilities with lyme. And so, if they are getting lyme treatment from a qualified doctor, they would just know them as typical lyme symptoms. And yes, some of them are dealing with strep infections on top of lyme -- but again, they would not be separating these things out as separate things. It is not PANDAS and lyme, but just lyme plus other infections.

Of course it's possible that strep is the only infection that triggers neuro symptoms. Not sure what you mean by "PANDAS treatments" in your case... but PANDAS/strep and lyme are both treated with abx and ivig. (with the exception of steroids). As has been posted over and over, a person can be postive for strep, and be reactive with symptoms to strep, AND STILL HAVE UNDERLYING LYME and not know it. I'm not saying it's true in your case, just that it is often true as testified in this forum from several people. I believe you CAN discount lyme if your child has a definite history of strep infections causing symptoms, and responds 100% to PANDAS treatments. That is where my family is at, and pursing lyme in my daughter's case is unwarranted.

Yes, it came up -- but it's not prominent in my mind what specifically was said. However, P.Mom recently posted of her visit to Dr. Cunningham that Dr. C stated that definitely lyme could cause high CamK.

Sheila, You are very kind to add another forum section in hopes of helping people deal with neuro dysfunction symptoms. I'm not sure how/why the idea of separating lyme aside came about, but I'll offer my opinion that I would not like to see that happen. The fact is that we are talking about ONE BIG UMBRELLA of infectious disease causing neuro dysfunction symptoms of OCD, tics, behavioral, etc. The forum has been recently changed to reflect this in adding PITAND to the title. While I would not call myself a board regular, I would hope that when a newcomer comes to this board that they are suggested to consider that there are several possible bacterial infections to consider (even if they have a strep trigger). And to consider getting tested for a variety of things by a qualified doctor. I think separating out all of the possible infectious triggers makes it difficult for people to get help. There are other boards that exist to help people with lyme. I think of LATITUDES as the place that they will get help specifically as it relates to the symptoms of neuro dysfunction. Curious how other people see this. Again, thank you Sheila for all you do!

I just returned from my daughters checkup with our LLMD, and I thought Id pass along some information I learned while there as it relates to lyme disease and the Cunningham study. We see one of the better known LLMDs, but Im just going to refer to him here as Dr. X. Another LLMD was also present Ill refer to him as Dr. Z. * Note: Ill list out some of the more prominent notes: (and while Im not on the board regularly, I do realize that people here are in regular contact with Dr. Cunningham and have posted some of this information. Im absolutely not claiming to know details of the Cunningham study Im only relaying information as told to me by LLMDs). 1. Previously, Dr. X has been working with one of the PANDAS docs on cases where it has been determined that lyme is a factor. 2. Dr. X then began contact with Dr. Cunningham (not sure who initiated). As has been posted here, Dr. Cunningham is well aware that lyme disease can create positive results in her test for the presence of anti-neuronal antibodies. 3. Dr. X and Dr. Z both reiterated the above: that there are various possible infectious agents that will cause a positive on the Cunningham test. The testing is for 4 anti-neuronal antibodies. Whether a person tests positive for one or more, in any combination, there is no way to know which infectious agent causes the autoimmune dysfunction. Only that the dysfunction has been caused. 4. Dr. X has now been having (past couple of months) the Cunningham test done on his lyme patients that most closely resemble the profile being studied by Cunningham: Neuro dysfunction with symptoms of movement disorders, OCD, behavioral symptoms, etc. Of these patients, over half have turned up positive to the presence of one or more anti-neuronal antibodies. Dr. Z is also going to start running the test for his patients. 5. LLMDs have long been aware of the potential for lyme creating autoimmune dysfunction in patients. This can include such things as chrons, autoimmune thyroid, etc. When the underlying bacterial infection is cleared, many times the autoimmune dysfunction resolves itself. Sometimes not. 6. Dr. X&Z: You can have active lyme bacterial infection causing neuro symptoms (and NO autoimmune component). You can also have active lyme bacterial infections causing neuro symptoms, and also have an autoimmune component. 7. Dr. X&Z: You ABSOLUTELY have to properly treat the underlying bacterial infection to completion. If you have unresolved autoimmune component, perhaps IVIG is warranted. 8. Dr. X &Z: Without a doubt, many of the patients who believe they are only dealing with strep, are actually dealing with underlying lyme/related infections. 9. These LLMDs are hopeful that if a patient gets a positive Cunningham test, then they will have better chance for insurance company to cover IVIG. (IVIG has long been used in lyme treatment when warranted). 10. That infectious agents may cause autoimmune neuro dysfunction is not new to LLMDs. However, the Cunningham study is of interest in that it is a test for actual, identified, anti-neuronal antibodies. 11. But also note, lyme bacteria alone without an autoimmune component can cause the identical neuro symptoms of movement disorder, OCD, behavioral, etc. I just want to add my own reiteration that there is no typical PANDAS presentation that is any different from how the lyme bacteria (as opposed to the strep bacteria alone) brings on these symptoms. Additionally, you can test positive for strep, and be reactive to strep, and STILL HAVE UNDERLYING LYME INFECTION. ***Unless youve had IGENEX testing done, and were examined by knowledgeable LLMD, you really cant discount lyme. I do not know to what extent the prominent docs studying neuro dysfunction --caused by strep and lyme and other share information. (otherwise known at this point as PANDAS docs and LLMDs). I hope it continues to grow. Both Dr. X&Z mentioned, for instance, that Swedo has for some time acknowledged lyme in this equation. IT NEEDS TO BE UNDER ONE UMBRELLA! The study of how an infectious agent results in neuro disorders (both caused by active infection and/or autoimmune component). *I will post under the New Lyme board topic heading, but I really would hate to see the board divided up by which infectious agent causes the dysfunction. In many cases, people are carrying around multiple infections.

It's very important to supplement with magnesium if one is dealing with lyme (and likely helpful even if w/o lyme). Google "lyme magnesium" and you will see the connection. If you are giving abx 2x daily, simply give the magnesium in the middle of the day and do not worry about interference with abx. This issue has come up before on the lyme boards. I usually followed the dosage as recommended by Kids Calm directions. As I said, it was almost miraculous how quickly the restless legs/pain issue resolved. I would count magnesium as one of the single most important things we gave/give our daughter (and now we all take it!). Mary

Sounds like you did the draw for Igenex -- so hopefully you will have some answers soon regarding lyme. Leg pain -- and chest pain -- are indicative of lyme infection. My daughter -- who had lyme -- suffered greatly from a sort of a restless leg syndrome pain. It was really terrible, and caused a great deal of distress at night. As soon as I started supplementing with magnesium, this went away completely and never returned. Lyme can deplete magnesium stores, and so it is important to do some supplementing. I used Kids Calm mag, and it helped almost immediately. But also generally, lots of kids and adults are deficient in magnesium, and would benefit greatly by supplementing. It's wonderful for calming down the neuro-system.

Yes, I absolutely believe that vaccines can trigger onset of symptoms. And I agree with what Elizabeth wroter about the idea that lyme may not be fully erradicated, but that a healthy immune system keeps it in check. My daughter -- from ages 2 to 4 -- was treated with abx for positive lyme. She became symptom free and we took her off abx and she was great for nearly a year. When she had her 5yo immunizations, it brought back the neuro-lyme. She was too young initially to use a cyst-buster abx, and so I believe that the lyme went dormant in cyst form, and re-emerged with immunizations. (she was then treated again with cyst-buster, along with other abx). Also, many people will surely test positive for lyme exposure, but are symptom-free. Their immune system from the start is keeping it in check. However, an illness or stressful event down the road can trigger the onset of symptoms.

SF Mom, Thanks for posting info on your appointment. I'm sure you were glad to finally have some of your questions aswered. Sounds like you are in good hands, and that further testing of your family, and trial of cyst buster will provide further information. (you'll have to let us know what cyst buster you are using -- Dr. J always used Tindamax with my daughter). Be prepared -- it can really stir things up! I hope that one of the important things people learn from your post, it that how experienced LLMD's are in considering, and treating, people with multi-infectious issues. They are NOT solely focused on lyme, but are skilled at determining various possibilities. They will run ALL the tests, use their best clinical experience, and help you sort through things. AND most importantly, an LLMD will treat you/your child until your symptoms resolve -- even if it takes years! You will not be left high and dry. Best of Luck. Mary

ColleenRN, You have been posting for a while about the possibility of lyme in your kids. Yes, PLEASE get the Igenex testing done! Why? You live in a very endemic area You have history of tick bites on your kids You have neighbors with lyme disease Your kids symptoms are in line with lyme There are some good lyme doctors in your area... please pursue an evaluation with one of them so you can get the proper treatment if indeed lyme is the culprit. Remember, your kids can still test positive and be reactive to strep -- and still have lyme as the root cause of dysfunction. Regards, Mary

By the time people go ahead with Igenex test, it's because they have reached a place where they are highly suspicious of lyme -- and thus the positive test. Including lots of posters on this board. Of course there are negative igenex test results out there -- but again you are not likely to find them on this board because the people who do go ahead and test probably are dealing with lyme. Regarding conspiracy, I don't think Igenex has anything to gain by handing out false-positives -- it's not like they are selling the drugs that cure lyme. I know you are mostly kidding, but I don't want anyone to discount the accuracy of these tests -- as they are the most sensitive testing out there. At the end of the day, it's a clinical diagnosis. And what matter MOST is that after a person begins lyme treatment is DO THEY FEEL BETTER AND FIND SYMPTOM RESOLUTION? I'm sure that you will find the vast majority of "positives" would say "YES!" Regarding Dr. Jones and Band 41, I'm not sure that "no significance" would accurately portray his opinion. Of course, he is quite skilled at making the clinical diagnosis in conjunction with the lab results.

Just wanting to clarify... are you trying to incorporate both PITAND and strep/PANDAS? There are many people here who have confirmed/are confirming that other bacterial infections are at the root of these neruopsych symptoms (lyme, myco, etc). Even if they do indeed still test positive and are triggered by strep. I realize that you are trying to keep your survey focused. But my point in hammering the lyme/other infection testing here is that so many people end up realizing that they are dealing with multiple infecions -- not just strep. Thanks for all your hard work.

WRONG info here on the bullseye rash! This type of rash is seen in maybe as few as 30% of patients -- which leads to lyme being dismissed in way too many cases. There can be NO Rash ever, or a rash of a very different sort than a bullseye. Also, there are many, many more than 11 species of borrelia -- which again leads to testing problems.

Emuls, You've stated that your daughter has lyme disease... is this the daughter you are referring to? Is she currently in treatment? If she does have lyme disease, then this would be underlying cause of her symptoms (even if she does test positive for strep). I think you wrote that she is seeing a LLMD -- what does this doctor say about her condition? (not sure what is leading you to Cunningham test??)

Good question. I'm not here all the time, but I don't remember anyone posting that their Igenex (specifically Igenex) was negative. Just perhaps a post or two on confusion over only band 41 positive. It's worth asking, though. My wish would be that Dr. Cunningham would include the Igenex panel in her workup... that would be incredibly valuable data.

I just want to say that I am so glad to see posts from people who have gone ahead and tested for lyme. For those of you that have confirmed diagnosis, I'm certainly sorry to hear that your child is dealing with lyme. But at the same time, I hope there is some relief in knowing what is at the root of the problem. I wish you all the best. Mary

Hi Dave, As others have already said, welcome to the forum. Your daughter's story touched my heart, and I wish you all the best on your journey to heal her. While you have received a PANDAS diagnosis in the past, it is possible that there are other infectious agents your daughter is struggling with in addition to strep. Because you live in a very lyme endemic area, please consider that she is indeed dealing with lyme, and possibly other infections. Lyme tests are hugely innacurate, and so the negative result you received may quite possibly be a false negative. Your daughter's symptoms are very much in line with the symptoms of lyme and other co-infections that go along with lyme. The only way you can know for sure is to have the lyme western blot done through Igenex labs, and see a specialized lyme doctor in your area. There are some good lyme doctors in your area that will test for many, many different infections -- not just lyme -- and help you get to the bottom of things. Once the doctor has a handle on the infections involoved, they will adequately treat your daughter with antibitotics and not cut her off until she is healed. Please read the recent lyme posts on this board. And please contact www.ilads.org for a lyme doctor located near you. I'm not sure if Dr. L will run a lyme test through Igenex labs... but I would strongly urge you to only use the Igenex lab test as it is the most accurate. www.igenex.com

Please, don’t let the “L” word stop you from reading on. Like others here who have discovered lyme is at the root of their PANDAS issues, I’m hoping to help connect the dots for some of you posters… Just some random thoughts referencing postings on various recent threads… 1. A Lyme/Borrelia infection creates a UNIQUE disease presentation in every individual that contracts it. There is NO standard presentation of symptoms. (which is why unknowledgeable doctors dismiss it too easily). It is multisystemic – so you may have many symptoms across many areas of the body. OR, you may have ONLY central nervous system involvement – with your only symptoms being neuropsych in nature (such as tics, ocd, anxiety, behavioral etc). It can present in the exact way you know to be the classic PANDAS presentation. ( Research: “lyme encephalopathy”, “neuroborreliosis”, “neurological lyme”, “neuropsychiatric lyme”. Quite a lot of medical literature exists on this topic. Extensive symptom list: http://www.canlyme.com/patsymptoms.html 2. You do NOT have to have joint aches and body pain to consider lyme. However, anybody here who has had joint pain / body aches, especially migratory ones, should ABSOLUTELY be thinking lyme as #1 underlying infection. 3. Western Blot testing is HUGELY INNACURATE. Consequently, CDC says lyme MUST be a clinical diagnosis. Forget all the lyme testing you’ve had, and get the Western Blot from Igenex done. It is the most accurate test out there. I know you’ve spent a ton of money and time on testing already, but the $200-$400 you will spend on the initial tests will save you years of heartache and pain, and potentially thousands of dollars in ineffective treatments. 4. Regarding Strep: You can be positive for strep. You can be reactive to strep. You can see clear flares in symptoms when exposed to strep. You can have high Cam K. BUT !!! Underneath it all, it can still be the lyme/borrelia bacteria that is driving the whole dysfunction of the immune system. 5. Herxing (an increase of existing or new symptoms) IS VERY INDICATIVE OF LYME and/or COINFECTIONS. There is a lot of discussion here regarding herxes, and what infections can cause them. Everything I have ever known, read or been told by lyme doctors is that only certain classes of organisms can cause the toxic die-off reaction that creates a herx. And strep isn’t one of them. *SF MOM, I hope Dr. Harris clarifies some of this when you talk with him. Or how IVIG treatments might factor into symptom flares?? I will re-verify w/our llmd at next appt. 6. Common antibiotics used to treat lyme include those that many of you are using: Azith; Augmentin; Amox; Omnicef; Flagyl and others. In lyme / Co treatment, flagyl and tindamax are used as “cyst busters” (lyme/borrelia bacteria can morph into 3 different forms, included a dormant-like cyst form.). Flagyl and Tindamax may produce particularly difficult herxing symptoms (followed by improvement). 7. LLMD’s (lyme literate medical doctors) are SKILLED AT TREATING THE MULTI-INFECTIOUS PATIENT. They know how to use combinations of antibiotics, and rotations of antibiotics, to attack one or multiple infections. They deal all the time with patients who have lyme, coinfections, mycoplasma, strep, ebv, and on and on. They strip away at the layers of infection. 8. LLMD’s won’t stop helping you until you are healed and symptom-free! 9. PANDAS doctors (and I mean no disrespect) are not well-versed in lyme. 10. Over 25,000 COMFIRMED new cases of lyme are reported each year. This number is vastly underreported and thought to be only 10% of the actual new cases each year. You do not have to live in wooded area to consider lyme. Lyme is found in EVERY STATE. Lyme can be transferred to the fetus during pregnancy. 11. Get the IGENEX testing done! http://igenex.com/Website/ 12. Contact ILADS for Lyme doctor near you: Book your appointment now… there are long wait times. http://ilads.org/

My rambling probably made things even more confusing Yes, of course it is absolutely critical to be able to get the diagnosis of lyme so you can treat. It's valuable for insurance purposes, and valuable for school issues. And it's much easier to deal with ins, school, etc with a lyme diagnosis than with a PANDAS diagnosis. Not right, but that's the way it is right now. What I was more speaking to was the idea when it is lyme + additional infections. The labels get confusing... is it lyme, is it pandas, is it pitand? In those cases, once you get the lyme and/or Coinfection diagnosis, i say forget sorting out the labels and get going on the appropriate antibiotic treatment under the care of an experienced lyme doctor (llmd). He/she is skilled at treating the potentially multi-infectious person. It sounds like you had lyme yourself at one time? Are you symptomatic? This is a pretty extensive symptom list: http://www.canlyme.com/patsymptoms.html I think the most important thing is for you to do as advised by ignenex and run the western blot on your son. But today, get the doctor referral names for your area (that I linked to before) and get an appointment scheduled (there are long wait times!). Ask the doctor's office if they will order up the tests for you for your future appointment. You hopefully should have test reults back by the time of the appointment. At the appointment I would ask him/her as to coinfections and testing of yourself.

It is possible to pick up lyme or similar infection in any state -- but certainly more prevalent in certain places. I think for any serious neuro-psych symptoms, Igenex testing should absolutely be done. I don't know your sons symptoms, but if your son primarily has tics, with no other symptoms or illnesses, have you considered that it may be due to allergies -- food or environmental triggers?

I’m not familiar with the story of how your son came to be diagnosed with PANDAS. I think sometimes it can get a bit convoluted trying to pull it all apart… PANDAS or PITAND? Strep? Lyme? Myco? Other? And quite honestly, I’m not sure how much lyme is on the radar screen of the different PANDAS doctors. What we are talking about is an infectious agent as the cause of a collection of symptoms. What infectious agent(s) will then determine treatment. In the end, the label doesn’t matter. What matters is whether your son is responsive to the correct antibiotic treatment. (and possibly IVIG when warranted). Regarding lyme or similar co-infection (and these are simply called co-infections because they are often contracted along with lyme, but can certainly be contracted individually): You can have lyme alone. You can have lyme and a coinfection. You can have lyme, and strep. You can have lyme, and myco. You can have lyme and [fill in the blank for untold others] You can have a co-infection alone You can have a co-infection and strep And on and on and on – layer upon layer – possibility upon possibility If you do indeed have lyme, THEN LYME IS THE UNDERLYING PROBLEM AND MUST BE ADDRESSED . It weakens an immune system so that other infections that come along (like strep) can take hold. You may indeed test positive for strep. You may see exacerbations when exposed to strep. But if you have lyme then that is your most urgent problem. Nothing will be fixed until you fix that. And yes, you can test with high CamK, and still have lyme as your issue. I think Michael/Tampa has posted that this was the case for him. The fact is, the Cunningham test doesn’t test/account for lyme. One more thing, lyme alone (or co) will give you every single PANDAS symptom you may be familiar with. Lyme alone will give a person mild neuro-psych symptoms such as anxiety, tics, ocd. Or lyme alone will send a person into rages and full-blown psychosis resulting in institutionalization. THERE IS A LOT OF LITERATURE about the neuro-psych manifestations of lyme. Google “neuropsychiatric lyme” and see what pops up. (I’m sorry, I don’t know your sons symptoms… I’m only saying that so people understand that lyme alone will do this). I've rambled on... sorry. Hope that helps explains things!

Please call Igenex and ask for their advice. They will make test suggestions based on where you live, or where you think your exposure may have been. Yes, it's possible to be positive for one of the other coinfections, but not for lyme. However, lyme testing is usually a good place to start. Do as much testing out of the gate as you are able to afford. It's always a pain to go back for more blood draws and multi-week wait times on results. Looks like you are in New England, so you are in an area where you can see a lyme literate doctor. Contact ILADS.org and ask for referral. Or, go to http://flash.lymenet.org/scripts/ultimatebb.cgi and post under "seeking a doctor" for your state, and people will reply. Make an appointment today! There are sometimes long wait times. Seriously, the right lyme doctor will get you going on the correct antibiotic protocol -- usually a combo -- that could make all the difference in the world. Do the testing in the meantime. PLEASE: Any of you in any New England State; mid/south east state; Maryland, Virginia, Pennsylvania, OH, MI, WI, MN and any Pacific region should be seriously considering that this is what you are dealing with. But lyme and/or any of the coinfections are found in every state in the U.S. I CAN'T SAY IT ENOUGH TIMES: these are the doctors that are very well versed in antibiotics, and their use in erradicating persistent infections.

Worried Dad; Mary M; Tenacity; Others… The symptoms you are describing in your children mirror the classic presentation of lyme disease: A flu-like illness, followed by (immediately, or months or years later) a cascade of symptoms. And the symptom list is long and wide-ranging. Those of you whose children suffer/suffered from body aches and pains should particularly consider lyme or similar infection. (but body aches need not be present to be considered for lyme. Sometimes it is only neurological symptoms). Unless you were seen by a lyme specialist, and tested from Igenex labs, I would discount any “negative” for lyme you have been told. PLEASE, PLEASE, PLEASE get the proper testing and the advice of a knowledgeable doctor. If you have seen positive results from antibiotics only, this is also a possible indication of lyme or similar infection. But it is imperative to be under the treatment of a lyme specialist – they are experts in providing a combined antibiotic protocol, at the correct dosing schedule, that will enable your child to move into recovery. Contact ILADS for doctor referral: http://ilads.org/ Or post here under “seeking a doctor” for your specific state, and people will give you doctor referrals: (LLMD stands for Lyme Literate MD) http://flash.lymenet.org/ubb/ultimatebb.php

SF Mom, Wow… your post gave me a lump in my throat. I am always sad to hear about any child dealing with lyme or coinfection, but happy to hear that you and your friends are finding further pieces to the puzzle of your children’s illness. I’m not sure if you were previously aware just how endemic N. California is for lyme and other similar infections, but I imagine you all are now. So glad you are seeing improvement on new antibiotic protocol. Yes, it is the COMBINATION and proper dosages that are key to kicking these infections. That’s why it is imperative for people to be under the care of a doctor who understands this. At the end of the day, people can put any label they want on the symptoms found on this forum, but what matters is that the infectious agent(s) are kicked into submission. You are fortunate to be in the care of Dr. Harris – one of the best lyme doctors in the country. After your appointment I hope that you will post back your thoughts on how you see all the pieces of the puzzle coming together for your children. I am curious as to what Dr. Harris’ thoughts are on strep as it relates to people who are positive for lyme/co’s. I think that in many cases lyme/co is the underlying infection, and another infection/stressful event comes along and triggers the onset of symptoms (it’s what happened to my daughter). So it can be deceptive. I have asked Dr. Jones about this on various occasions, and would love to hear Dr. Harris’ thoughts. You know I have come and gone on various occasions to this forum beating the lyme/co’s drum, but it’s just that I see it in so many people’s stories. I wish that all PANDAS docs, and Dr. Cunningham, would make the Igenex testing a standard part of the workup – the information would be so valuable. I don’t want to highjack this thread – so I will check back periodically to see if you have posted an update. I sincerely wish you all the best in figuring everything out. Mary