lyme_mom

The lyme spirochetes attack the CNS directly. The spirochete is a stealth pathogen that hides in the body and changes shapes to evade detection. This is why you need multiple antibiotics to corner it and kill it. In addition, when the spirochetes are killed by the antibiotics they release bio-toxins that can cause symptoms. This is why it is so important to know if lyme or other tick-borne illnesses like Bartonella and Babesia are triggering the PANDAS symptoms.

Igm would indicate an active infection. It is crazy that you can't get good lyme test covered by insurance. You might be better off getting the cd57 test yourself and this is covered by insurance. It will give you an idea of whether you still have a problem with lyme. ( A low score is interpreted as a sign of an active infection. Igenex' test will only tell you if you have antibodies to lyme (and it would not be surprising that you do considering you have had it before). The only other thing the igenex would tell you is if you have igm antibodies to lyme, which would be a sign of an active infection. If I were you I'd just do it for your son to be sure lyme is not a factor in his symptoms.

Was it igm or igg? You usually have band 41 if you have lyme disease but it is not in and of itself proof of lyme disease. If you could do the igenex test you could find out if your son has antibodies to bands 31 and 34 also. The Labcorp Western blot does not test for these important antibodies to Lyme Disease so it is like having half a lyme test. If your son has symptoms I would definitely get the igenex lyme test (test #s 188 and 189) and/or have an evaluation by an ilads doctor. Until they develop a better test, lyme will remain a a clinical diagnosis. Even the CDC says lyme is a clinical diagnosis and their two tiered testing is designed for reporting cases of lyme, not diagnosing it. PacificMama posted a very interesting explanation of band 41 in a discussion with Dr. T about his observation that 80% of his patients with PANDAS are positive for band 41. http://www.latitudes.org/forums/index.php?...art=#entry56240. Lyme Mom

Yes. If you have lyme and experience increased or new symptoms on antibiotics it can be a die off reaction or herx, including joint/,muscle pain and rashes. I think augmentin is effective against some co-infections but I can't remember which ones. Igenex is the best lyme test. The basic igg and igm western blot (188 and 189) cost 200. A more complete panel of tests for lyme is available for 400 but I would start with the Western blot by Igenex. I don't think the Quest Western blot is considered very good. Labcorp's Western blot is better I believe. That's always an option-running the Labcorp test first and then resorting to the Igenex test. Some people get a positive result on the Labcorp test and do not need to do the Igenex test.

Would anyone know or comment on wether the Lyme connection comes with all the comorbid issues, or is it just tics? Is tics the only symptom, or is it more likely that there would be other things going on as well? Like when my pediatrician saw the blood work up that our DAN doc orderd for my son (really at my request or suggestion) and the lyme, erlechia, babesia, .... he was really puzzled and felt that it was really strange to order all that, and that my son would be 'really sick' if he had any of that stuff..... I guess he felt there would be so many other signs of having something than just tics? (all the tests re lyme were negative, btw).... Lyme or other tick-borne illnesses like Bartonella or Babesia can cause someone to have symptoms that look like PANDAS. The symptoms of Lyme (also called Borellia) and the coinfections of Bartonella and Babesia can also be quite subtle, especially in the beginning. You really need to be alert to these symptoms to pick up on them. As for being "really sick", you don't want to wait until it is obvious that the child is ill b/c this means the infection would be quite far along and harder to treat. When my oldest was diagnosed with lyme we tested the whole family with igenex. I just wanted to know what we were dealing with. To my surprise and horror my other two kids tested positive. They would not have tested positive on the standard western blot because the standard test does not test for bands 31 and 34, two of the most important markers for lyme which they antibodies for. Once we knew my other two kids were positive we watched them and when their symptoms started we treated them. If it had not been for our oldest son's case of lyme we probably would not have picked up on our other two kids' lyme disease because they didn't have a lot of symptoms. I think we nipped it in the bud fortunately. All the tests are unreliable but some are better than others. If I were wondering whether to spend the money on a particular test like the Igenex Western blots (which cost 200) OR a visit to an ilads doctor, I would choose the latter. Lyme/Babesia/Bartonella are diagnosed based on symptoms, not test results. I cannot emphasize this enough. The reason it is important to consider tick-borne illnesses is b/c lyme is the fastest growing infectious disease, ten times more common than AIDs. It should be the first infection to consider when a child has a mystery illness, not the last.

Yes you can do the lyme testing while on antibiotics. I believe that if a child has been on antibiotics a long time it can affect the test by stopping the body from producing anti-bodies to lyme. As Elizabeth mentions in this thread, you can also test for lyme and other infections through kinesiology or muscle testing. If you have not seen this done before it is really strange but it works. It is based on the same principles of a lie detector test where the body produces measurable reactions when exposed to certain things that are a problem for the person. This can be done by pressing on a person's arm while they try and hold it straight or by using a machine that measures the body's response via the palm of the hand. I would definitely do all the blood work you can including the igenex testing but this might shed additional light on what is going on with your child. My kids and I were muscle-tested for lyme/bartonella/babesia several times during our lyme treatment and the results pretty much mirrored what our LLMD thought was going on, ie. one person had just lyme, another had lyme/babesia/bartonella, etc. Any intuition can be helpful when you are trying to get a child well and you are not sure what is going on. The practitioner can also test to see if the combination of medications a person is taking agree with him or her. With my son we learned that the antibiotics were helping him but the combination of antibiotics and the homeopathic remedy samento were not good for him; so we stopped the samento. Some meds stress a person and they can fix this if a particular medication is stressing a person. They use principles of acupuncture to calm the body's response to the particular item.

Susan, When you get your lyme results back PM me and I can help you interpret whether you had a good test. Hopefully they gave you a lyme test that is a full western blot. Also, it would be good to know if any bands were present even if the test is "negative". Lyme Mom

An Ilads-trained doctor is a doctor who is a member of the International Lyme and Associated Diseases Society. These doctors train under doctors who have expert knowledge of how to treat lyme. They also go to conferences every year where they share information on what works and what doesn't work. Some of these doctors have a lot of experience with PANDAS as well as Lyme (as my two ilads doctors do). My big concern, and the reason I contribute to this forum on the subject of lyme, is that these PANDAS specialists might be missing a lot of lyme if they are relying on standard tests and not treating the symptoms they see. Parents need to be educated about lyme so they can be sure their child has been properly evaluated. I would not use a doctor to treat my family for lyme who is not an ilads doctor, period. I want to get rid of it and I want someone who has a lot of experience doing this day in and day out. There is no cookie cutter approach to treating lyme-its a speciality unto itself and every case is a little different. Lyme is a persistent and stealth pathogen, very hard to get rid of. A short course of antibiotics is almost never enough. If someone has had lyme a long time or if co-infections are involved it is a real challenge to treat. You can email Barbara at Ilads at this address contact@ilads.org and she will give you the name of a doctor near you. Lyme Mom

Jennifer, Your son's history sounds very suspicious b/c of the exposure to the woods prior to the onset of symptoms. It certainly would be worth checking out thoroughly b/c it could lead to a resolution of symptoms if lyme is involved. The testing for all of these things is not reliable so it is best to visit an ilads-trained doctor for an evaluation. Of course it is also wise to get the Igenex test done (igg and igm for lyme) b/c all other standard tests are not very good. Even a negative igenex test does not mean a child does not have lyme. It just means that the child's body is not making antibodies to lyme. This can happen when a person is so sick with lyme disease. This is why the symptoms are so important. In any event, if lyme or bartonella or babesia are suspected, what do you have to lose by treating it? These kids are on long term antibiotics anyway, there is no harm in trying the right combination of antibiotics that could kill a suspected lyme/babesia or bartonella infection. The treatment for lyme should kill mycoplasma too. You can get lyme disease from ticks but they also believe mosquitos, biting flies and fleas can give you Lyme. In Europe they did studies where they found spirochetes in the guts of these biting insects. You do not need to see the tick and most people do not. Also, most people don't get a bullseye either. We didn't see a tick or get bull-eyes in our family but we had lyme. I wish I had known what the symptoms of lyme are when my son first started showing some signs. We think he had it several years before he was diagnosed but I didn't know anything about Lyme. Apparently my pediatrician didn't either :-(. Also an infected mother can pass it to her child in vitro or through breastmilk. This has been well-documented. Yes Lyme can cause all of the symptoms of PANDAS. I have posted that my LLMD says that 60% of the kids with PANDAS that he sees have lyme. He treats these kids for strept AND the lyme infections and he says he has a lot of success. They often use bicillin shots for the strept and the lyme antibiotics on top of this. This is why it is critical to make sure that lyme/babesia/bartonella are not the cause of the symptoms especially before steroid treatments. Also, if a child has a lyme illness you would get more out of IVIG if you do it once the infection is under control. Ideally you wouldn't need to do it all with the right lyme treatment. One expert told me that doing IVIG on a child with lyme "is like throwing a glass of water into the ocean." I posted some good links on the Cure Unknown thread. You can go to these links to get more info on the symptoms of lyme in children. Lyme Mom

That's a typical response unfortunately. Not everyone has joint issues. All you need is one symptom to have Lyme and it could be just neurological or just psychological. See this link for a good brochure about Lyme Disease. http://www.lymediseaseassociation.org/ABCsLYME.pdf There is a blurb about Pediatric Lyme in this brochure that was written by Dr. Charles Ray Jones. For a complete list of possible symptoms of Lyme (and other tick-borne diseases) go to the ilads.org website and click on Treatment Guidelines by Joseph Burrascano or click on this link: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. On page 9 there is a long list of symptoms. The California Lyme Disease Association has a good article about Lyme in Children too. http://www.lymedisease.org/resources/children.html. After reading a few lists you will get the idea of how diverse the symptoms can be. You will understand why doctors are so quick to dismiss Lyme after reading Pamela Weintraub's book. Lyme Mom

i have not yet read the book but know of it. i just wanted to add -- i had believed my son does hit the mark completely for pandas - fit dr t's type 1 completely with behaviors, high titers, positive culture, CT scan showing infected sinuses, 100% remission with first abx. he had a western blot last june that was completely non-reactive. when i've looked up lyme symptoms, he doesn't have any that are not also pandas symptoms. he had an exacerbation in the fall with a flu and in january, i thought although he's not in crisis, he's not healthy either. he seemed to just have a collection of good and bad days. i spoke to our dr about lyme and he referred us to another dr. 2 weeks ago we saw him and he said based on what he's hearing, he would think he has lyme. based on the testing he does, he tested positive for lyme and toxoplasma gondii (there's some lyme-parasite connection that i don't understand). we'll see where this ends up and if he seems to become healthier with the lyme treatment. i was really surprised b/c he fit for strep so completely and i was putting faith the western blot, b/c it was totally non-reactive. now could the lyme be the overriding root cause, making it possible for the strep to be so troubling also? i'm not sure how it all fits with the antibodies and brain interaction -- but no one else seems to be sure either. we do live in an lyme epidemic area - maryland - and the dr. said he believes "1/2 of the people in front of you have lyme whether they know it or not." thanks, llm, for reminding me that i've got to get that book! The Western blots are not reliable. The best ones come from Igenex or Clongen Labs and you have to pay out of pocket for them. Lyme is a clinical diagnosis. My Lyme literate doctor in Maryland says that 60% of his patients with PANDAS symptoms have lyme or lyme co-infections. Another LLMD we use told me that Bartonella can cause PANDAS symptoms. Lyme Mom

Every case of lyme is different so that was not good advice you got. It can take years for lyme to progress-I mean ten, twenty years in some cases. It depends on how much lyme the child has, what strain of lyme they have, what other infections the child has and how strong their immune system is. Which bands were positive? If your child had even one lyme-specific antibody and symptoms that could be lyme he should be treated. You have nothing to lose and everything to gain. I know who Dr. Crist is and he is supposed to be good. He is expensive though. My lyme doc doesn't take insurance but only charges 250 for the first appointment and 125 for followups. He is outside DC though. With a cheap flight on SW into BWI you would end up paying at least 450 to see my doc. I looked into lyme docs in St Louis for a relative there and there are some others outside St. Louis, although none right in St. Louis. Either way it is several hours drive. You can contact Ilads at contact@ilads.org and ask for a name. I think a holistic lyme MD would be great b/c that is what we have and he does other things that regular docs do not do to build up the immune system. I found the info on docs in Missouri and will PM them to you. Lyme Mom

I would make very sure it isn't a tick-borne illness at the root of your child's problems b/c the PANDAS treatment will not eradicate lyme or other tick borne illnesses, although it could help to be on an antibiotic. (hence some kids get better or herx but then relapse). Lyme is commonly a problem with children with PANDAS but most doctors, even PANDAS doctors, are not good at diagnosing it (unless they happen to also be tick-borne disease experts and members of ILADS). A doctor should not rely on the test results but diagnose lyme clinically especially if a child has a lot of symptoms that could be related to lyme. The tests are totally unreliable and are used to support a clinical diagnosis. You don't need a bulls eye rash to have lyme either. I would want an evaluation by an ilads doctor (ilads.org) to be sure I wasn't missing something significant. These ilads doctors know how to get rid of these complex tick-borne illnesses because this is what they treat day in and day out. You need specific combinations of antibiotics (cyst killers, broad spectrum, etc.) and possibly antimicrobials to treat lyme and the coinfections. Your family doctor, your average Infectious disease doctor, or your neurologist would not be the right doctor to determine whether lyme is a factor. Hard to believe but its true. You should read Cure Unknown by Pamela Weintraub if you want to learn more. You will realize why it is so critical to be sure lyme (and bartonella, babesia) are not factors involved in your child's health situation.

You should have your child evaluated by a lyme literate doctor so you don't miss the chance to treat this as soon as possible if it is lyme. A PANDAS doctor is not the doctor to evaluate a child for lyme unless that doctor is also an ilads-trained expert on tick borne disease. Lyme patients often have lots of infections like EBV and Mycoplasma just as Michael Tampa posted. Lyme Mom

Melanie, What are your son's other symptoms? Has he been evaluated for Lyme, Bartonella and Babesia? Any of these can cause neurological symptoms. If they are at the root of the problem, IVIG will not be enough.

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia . You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms. Lyme Mom I just got the labs on Friday afternoon. The first lyme antibodies test was 'positive presumptive". Then it says the confirmatory EIA test was negative. They cancelled the Western Blot. Now which result am I supposed to believe?? So confused! Given his symptoms you really need a doctor who will put him on lyme antibiotics while you get a good lyme test done. I would not take no for an answer. If this is lyme you do not want to wait another month. You need to know which antibody bands your son tested positive for and only a western blot will tell you this. I'd just insist on antibiotics while you wait for an igenex test to be run. If your doctor won't do this you need to find another doctor. The consequences of not treating lyme are extremely serious. It sounds like he is already pretty sick. Keep in mind that about 40% of the lyme patients who the top lyme pediatrician in world, Dr. Jones, has treated for lyme had negative ELISA tests for lyme. If your son actually got a positive result the chances are very good that he has lyme (given his symptoms). The sooner you treat lyme the better the results. The longer you have it the harder it is to get rid of and the more drastic steps you have to take to get better (like long term antibiotics and/or a picc line). If you want to PM feel free to.

If he has a positive ELISA he needs to be on antibiotics immediately for Lyme! The Elisa is very insensitive so if he gets a positive on that this test is most likely is sick with lyme. The fatigue is a lyme symptom but there are a number of different diseases that are lyme-related that can cause fatigue (not just Borellia . You need to see a doctor who is an ilads trained lyme specialist so that you get him on the right dose of antibiotics asap. Amoxicillin and Doxycyclene are the two most common choices for Borellia, depending on the child's age. Sometimes other antibiotics are used in addition depending on the symptom picture (ie., does he have strept or does he have symptoms of babesia, bartonella, mycoplasma, etc.). Babesia causes fatigue too. Does he have night sweats or leg cramps? Rib soreness or trouble getting enough air? Waiting for a confirmatory Western blot is unsafe. While you wait the lyme can multiply in his body. I am certain that no lyme specialist would wait to treat given his test results and symptoms. Lyme Mom

Hopefully the filling did not contain mercury b/c mercury can make it easier for lyme (if there is lyme) to hide in the body and evade antibiotics. Many lyme literate doctors detox heavy metals when they are treating lyme b/c of this. Of course mercury can cause horrible symptoms in and of itself and that is why DAN! doctors also detox heavy metals. Any silver filling has mercury in it. The white ones shouldn't have mercury. Root canals are also notorious for causing illness in the body b/c they provide a good hiding place for bacteria in the miles of canals in the tooth. Also, when you have teeth pulled it often leaves a cavitation in the gum that you cannot see but which also provides a place for bacteria to grow. If you go to a biological dentist you can have all of these issues dealt with in a way that minimizes exposure to these toxins.

The important thing they check is the liver to make sure the antibiotics are not elevating the liver enzymes. I forgot the three character code for this test. It starts with an A.

That's awful but I am not surprised. You will love that book. Pamela Weintraub has some expression like being in the "lyme lands" which is very apt. When you mention lyme some practitioners would rather diagnose the plague than test for or treat lyme. Makes no sense at all. This reliance on the screening test is crazy b/c you want to nip it in the bud, not wait until the Lyme Disease is in full bloom in the body. The screening tests were designed for reporting cases of lyme to the cdc, not diagnosis of patients.

Its a new book so I bought it on Amazon for $35. The charge for Igenex tests 188 and 189 is 200 but you may have to pay a doctor a blood draw fee in addition to this so it ends up costing close to 300. You would think it would help but I really don't know.

Its a new book so I bought it on Amazon for $35. The charge for Igenex tests 188 and 189 is 200 but you may have to pay a doctor a blood draw fee in addition to this so it ends up costing close to 300.

Dr. T, You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme. As I'm reading more deeply into Lyme literature I can appreciate a huge political component. Connecticut (the state where Lyme was born) just passed a law (66-0, I might add!) approving use of chronic antibiotics in Lyme disease. I wasn't aware of this until recently http://www.canlyme.com/Connecticut_Lyme_law.html I wonder if there will ever be laws ensuring treatment of PANDAS patients - I fear the cost-cutting measures of "evidence based medicine" are going to make treating PANDAS difficult in the future. Dr. T Dr. T, That's right. If you go to Under Our Skin.com you can see a trailer for the movie. The movie is $35 is you want to buy it. Its worth it. Its an outrage what the ISDA is doing to lyme patients everywhere who need more than 3 weeks of antibiotics. We have had some outrageous experiences with doctors who do not understand and do not believe in lyme disease. A pediatric neurologist at Children's Hospital told me that 1. my son would never have his Bells Palsy improve (which it did btw), 2) that he had never heard of Bartonella (even tho it causes neurological symptoms!) and 3) there is no way a tick can give you two diseases (laughable). Also we had trouble getting my son a picc line at our local hospital even with a doctor's order. They wanted proof he had CNS involvement which should not have been necessary. We finally went to another hospital in another state and had no problem having our doctor's order filled for the picc line. It felt like we were in the former Soviet Union at times. Luckily I read Cure Unknown early on and I was forewarned regarding the controversy. Its a must read for anyone interested in LD. lyme mom

Dr. T, You need to read Cure Unknown for a good overview of the Lyme problem. Pamela Weintraub explains that the ticks that carry lyme can be found from coast to coast. There are sometimes regional characteristics but you can get the same lyme disease in NY that you get in California b/c the ticks are all over the country now. The midwest has a huge lyme problem but many do not know this. Likewise there is a huge problem in the South (NC and SC) but they do not know this. In fact the NC and SC Medical Boards have made it impossible for doctors to treat lyme in those states. They have found Lyme Disease in every state now. The CDC data on this is a gross underestimate of what is really going on. Another good book is Insights into Lyme Disease Treatment by Connie Strasheim. 13 LL practitioners share their approach to treating lyme.

We never had to do that and most people I know didn't either. We just got the Igenex tests and we had antibodies. I think people do the provocation tests can be helpful when lyme is suspected but the patient tests negative. With lyme and the coinfections the tests can turn positive with treatment b/c the body is able to mount an immune response with the help of the anti-biotics. lyme mom I came across something in a new lyme book I am reading that may interest many of you. Children who were born with Lyme Disease can take up to a year to turn positive (after treatment has begun). She discusses provocation testing. The book is Insights into Lyme Disease Treatment by Connie Strasheim. I just started the book and it looks like a great resource. It contains information from 13 lyme literate practitioners about how they treat lyme. The lyme literate practitioner who says that it can take a year for kids to turn positive is Susan Marra of Seattle who worked under Dr. Charles Ray Jones, the pediatric lyme expert we have discussed on this forum. This is something to keep in mind when you get your test results back. All the more reason to be evaluated by a lyme literate doctor b/c the tests are so unreliable.