lyme_mom

I have never heard of asking the labs to report bands 31 and 34. I do not think that any lab but Igenex or Clongen tests for 31 or 34. The lyme doctors prefer to use the Igenex and Clongen lyme tests. If you happen to get a positive result from a lesser lab, then you are very positive b/c they are not very sensitive.

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

Good for you! I am sorry that your son has Lyme but at least you know what needs to be treated. Dr. Charles Ray Jones told me that all kids recover from Lyme with the right treatment eventually so hang in there. You should see huge improvements within months of beginning the lyme treatment. If you can find a lyme literate doctor who understands yeast issues (like an integrative physician) that would be great. There is a new book about lyme I just started to read that you may want to get. It is called "Insights into Lyme Disease Treatment" by Connie Strasheim. lyme mom lyme mom

Karen, This is a good question. It is considered a direct effect of the spirochetes on the brain. I have seen many references to Lyme being an auto-immune problem on this board and, while a lyme patient can have an auto-immune problem, having lyme does not mean necessarily that you have an auto-immune problem. These patients get better and many get rid of all their symptoms with the right treatment. The lyme doctors believe that anyone who still has lyme symptoms is not ready to stop treatment (and this includes neuropsychiatric symptoms for sure). There is a lot of conflicting info on the internet about lyme disease. Your "traditional" sources of info are often wrong. At the heart of the controversy over the diagnosis and treatment of lyme disease is a small group of infectious disease doctors who are in charge of the Infectious Disease Society of America. Connecticut Attorney General Blumenthal sued the ISDA in May of 2008 and charged them with flawed guidelines for the diagnosis and treatment of Lyme Disease and charged that 9 out of 12 have financial conflicts of interest related to Lyme Disease. They created a new panel to review the ISDA guidelines and last week it was reported that this panel was already violating their agreement with Blumenthal in an attempt to bypass a full vote by the new panel regarding the guidelines. They want to keep the old guidelines in place at any cost. Its an outrage that these doctors are standing in the way of patients who need treatment for Lyme. The book Cure Unknown tells the whole history. There are several personalities who have dominated the lyme discussion for the last 40 years to the detriment of patients with lyme everywhere. You can see them in the movie Under Our Skin and judge for yourself. These doctors say that any patient who presents with symptoms of lyme after antibiotic treatment has their immune system to blame, not a persistent lyme infection. Guess what? There is no treatment necessary if this is the case and some of these doctors routinely testify on behalf of insurance companies, which is a huge conflict. As a mother with a very sick child with lyme I knew who I wanted to treat my family. Thanks for responding. There may be a little confusion on some people's part about neuropsych symptoms of lyme being autoimmune. I had no idea what the prevailing thoughts about lyme infection's effects on the brain are--that's why I asked. I guess it is easy for some people to just assume (at least on this forum) that a lyme infection is triggering an autoimmune response because with PANDAS there is a lot of evidence and research that says this is autoantibodies messing with transmitters in the Basal Ganglia. Most of the time, our children respond to immune therapies. Autoimmunity or direct infection? I do think that one or the other calls for different treatments--and long term prevention. It is important for parents to understand the difference. That being said...lyme may CERTAINLY be a factor in some or many of the "chronic" PANDAS cases...and having the correct information on the disease is essential because a parent may choose an to do IVIG or plasmapheresis for PANDAS, but if a bacterial infection associated with lyme is present...then I don't think they will have a good outcome....but I'm not a doctor! ~Karen Karen, Exactly! Some treatments for PANDAS could be helpful for lyme but not enough to kill lyme (or Babesia, Bartonella, Mycoplasma, etc). Other treatments for PANDAS could really make any infection worse. The challenge is getting to a doctor who can figure out what is really going on b/c most of the lyme and coinfection tests are not reliable!

Karen, This is a good question. It is considered a direct effect of the spirochetes on the brain. I have seen many references to Lyme being an auto-immune problem on this board and, while a lyme patient can have an auto-immune problem, having lyme does not mean necessarily that you have an auto-immune problem. These patients get better and many get rid of all their symptoms with the right treatment. The lyme doctors believe that anyone who still has lyme symptoms is not ready to stop treatment (and this includes neuropsychiatric symptoms for sure). There is a lot of conflicting info on the internet about lyme disease. Your "traditional" sources of info are often wrong. At the heart of the controversy over the diagnosis and treatment of lyme disease is a small group of infectious disease doctors who are in charge of the Infectious Disease Society of America. Connecticut Attorney General Blumenthal sued the ISDA in May of 2008 and charged them with flawed guidelines for the diagnosis and treatment of Lyme Disease and charged that 9 out of 12 have financial conflicts of interest related to Lyme Disease. They created a new panel to review the ISDA guidelines and last week it was reported that this panel was already violating their agreement with Blumenthal in an attempt to bypass a full vote by the new panel regarding the guidelines. They want to keep the old guidelines in place at any cost. Its an outrage that these doctors are standing in the way of patients who need treatment for Lyme. The book Cure Unknown tells the whole history. There are several personalities who have dominated the lyme discussion for the last 40 years to the detriment of patients with lyme everywhere. You can see them in the movie Under Our Skin and judge for yourself. These doctors say that any patient who presents with symptoms of lyme after antibiotic treatment has their immune system to blame, not a persistent lyme infection. Guess what? There is no treatment necessary if this is the case and some of these doctors routinely testify on behalf of insurance companies, which is a huge conflict. As a mother with a very sick child with lyme I knew who I wanted to treat my family.

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also? No, I literally began finding this over the past few weeks. If you just ask for "Lyme titers", you will come up empty as Western blot done only as a reflex if titer exceeds a pre-defined threshold (<0.91 in my geographic area). Now I routinely ask for LYME WITH WESTERN BLOT, and we find the p41 IgG and IgM bands in almost all "PANDAS" patioents (LabCorp testing in most patients). There is so much BS about lime out there I have to follow my gut instincts (no pun intended) You bet these patients need thorough Igenex testing for p31 and p34 at least. Would you also recommend the Igenex co-infection panel? Also, can you send me any contact information on Dr. Charles Ray Jones? (you can reach me best at trifmd@gmail.com) I'm going to start to screen for common flagellated enterics as well. Dr. T That is interesting. I told my lyme doctor about this today. Your observation dovetails with my lyme doctor's comment that 60 to 70 percent of the kids he treats with PANDAS are also infected with lyme or a co-infection of lyme. The lyme specialists we use are more than wiling to share their knowledge with other doctors. Both my doctors allow other doctors to come shadow them to learn about treating lyme. I will email you contact info for Dr. Jones and my local holistic lyme MD. Dr. Jones does a lot of testing for lyme and the co-infections every time we see him. He repeats the tests after antibiotic treatment b/c sometimes a negative test turns positive with treatment. Apparently the co-infection tests are highly unreliable too-you can have it but not test positive. Tomorrow I will pull out my kids' tests and note which tests he runs and email you. Lyme Mom Dr. T, These are the tests that my lyme specialist doctors ran on my kids: Igenex Western blots (igg and igm) and Specialty Labs Bartonella Henselae Igg and igm abs. Also Dr. Jones tested for other coinfections with babesia fish (rna) and babesia duncani antibody panel from igenex. He also tested for mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, E chaffeenis-hme (monocytic) igg and igm and mono and epstein barr and strep tests from labcorp. One note of caution-these co-infection tests are unreliable b/c there are so many strains of these co-infections. For example, there are 13 known strains of Babesia and they can only test for two. My son tested negative for Bartonella at least 4 times and yet he clearly has it b/c he didn't get better until rifampin was added to his antibiotic regime. Dr. Jones would check him for a Bartonella rash at every visit (cat scratch marks on the torso). One day 18 months into his lyme treatment it finally showed up, an unmistakable Bartonella rash on his chest. His doctors think it was part of a herx or die-off. lyme mom Do you know if insurance will cover Igenex testing? A few parents have asked about this. Dr. T I think it depends on your insurance. I have not submitted ours and I should have. I had assumed that they do not cover it b/c Igenex does not handle insurance. I think you can submit it to your insurance company and they may pay for it. Someone told me that our insurance provider, United Healthcare, actually owns Igenex, which is very interesting. Many of the tests that Dr. Jones ordered were covered such as the Specialty Labs test for Bartonella. They can give you advice about which ones are usually covered.

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also? No, I literally began finding this over the past few weeks. If you just ask for "Lyme titers", you will come up empty as Western blot done only as a reflex if titer exceeds a pre-defined threshold (<0.91 in my geographic area). Now I routinely ask for LYME WITH WESTERN BLOT, and we find the p41 IgG and IgM bands in almost all "PANDAS" patioents (LabCorp testing in most patients). There is so much BS about lime out there I have to follow my gut instincts (no pun intended) You bet these patients need thorough Igenex testing for p31 and p34 at least. Would you also recommend the Igenex co-infection panel? Also, can you send me any contact information on Dr. Charles Ray Jones? (you can reach me best at trifmd@gmail.com) I'm going to start to screen for common flagellated enterics as well. Dr. T That is interesting. I told my lyme doctor about this today. Your observation dovetails with my lyme doctor's comment that 60 to 70 percent of the kids he treats with PANDAS are also infected with lyme or a co-infection of lyme. The lyme specialists we use are more than wiling to share their knowledge with other doctors. Both my doctors allow other doctors to come shadow them to learn about treating lyme. I will email you contact info for Dr. Jones and my local holistic lyme MD. Dr. Jones does a lot of testing for lyme and the co-infections every time we see him. He repeats the tests after antibiotic treatment b/c sometimes a negative test turns positive with treatment. Apparently the co-infection tests are highly unreliable too-you can have it but not test positive. Tomorrow I will pull out my kids' tests and note which tests he runs and email you. Lyme Mom Dr. T, These are the tests that my lyme specialist doctors ran on my kids: Igenex Western blots (igg and igm) and Specialty Labs Bartonella Henselae Igg and igm abs. Also Dr. Jones tested for other coinfections with babesia fish (rna) and babesia duncani antibody panel from igenex. He also tested for mycoplasma Pneumoniae igg and igm, Human Granulocytic Ehrlichia HGE, E chaffeenis-hme (monocytic) igg and igm and mono and epstein barr and strep tests from labcorp. One note of caution-these co-infection tests are unreliable b/c there are so many strains of these co-infections. For example, there are 13 known strains of Babesia and they can only test for two. My son tested negative for Bartonella at least 4 times and yet he clearly has it b/c he didn't get better until rifampin was added to his antibiotic regime. Dr. Jones would check him for a Bartonella rash at every visit (cat scratch marks on the torso). One day 18 months into his lyme treatment it finally showed up, an unmistakable Bartonella rash on his chest. His doctors think it was part of a herx or die-off. lyme mom

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also? No, I literally began finding this over the past few weeks. If you just ask for "Lyme titers", you will come up empty as Western blot done only as a reflex if titer exceeds a pre-defined threshold (<0.91 in my geographic area). Now I routinely ask for LYME WITH WESTERN BLOT, and we find the p41 IgG and IgM bands in almost all "PANDAS" patioents (LabCorp testing in most patients). There is so much BS about lime out there I have to follow my gut instincts (no pun intended) You bet these patients need thorough Igenex testing for p31 and p34 at least. Would you also recommend the Igenex co-infection panel? Also, can you send me any contact information on Dr. Charles Ray Jones? (you can reach me best at trifmd@gmail.com) I'm going to start to screen for common flagellated enterics as well. Dr. T That is interesting. I told my lyme doctor about this today. Your observation dovetails with my lyme doctor's comment that 60 to 70 percent of the kids he treats with PANDAS are also infected with lyme or a co-infection of lyme. The lyme specialists we use are more than wiling to share their knowledge with other doctors. Both my doctors allow other doctors to come shadow them to learn about treating lyme. I will email you contact info for Dr. Jones and my local holistic lyme MD. Dr. Jones does a lot of testing for lyme and the co-infections every time we see him. He repeats the tests after antibiotic treatment b/c sometimes a negative test turns positive with treatment. Apparently the co-infection tests are highly unreliable too-you can have it but not test positive. Tomorrow I will pull out my kids' tests and note which tests he runs and email you. Lyme Mom

The recent experience on the OCD board was an unpleasant one. It was surprising in a way because in general, the OCD community has been more accepting of PAND than the TS community (among doctors AND patients). It makes me feel like PANDAS is "coming into its own" as the community starts to find kindred spirits among the other autoimmune communities (tho I sure wish you guys had a happier ending in sight - I must say your continuing uphill battles doesn't make a good recruiting poster). I'm curious, as I don't know anything about the lyme community - do you deal with the same kinds of fractures that exist in the autism communities or are you generally more united? I worry as PANDAS matures that we will split over treatment debates, disagreements about where any (yet to be found) funding should go, etc. Right now, we're all survivors of a ship wreak sharing a few life preservers. Put us all in a boat with a little less desperation and I worry about how well we will or won't get along... Goes back to my "married to our ideas" post earlier this week. I too hope we all remember to be open to possibilities and that there may be no "one" answer. In fairness (and I know you don't mean otherwise, but for those that were not there), it was definitely more of a moderator issue than a OCD community issue. I think in general everyone is still quite united within Infection-triggers Neuropsychiatric Issues (although we are rather passionate at times!!) and within the OCD community - whatever helps our kids is on the radar. That the moderators kind of stressed out was odd, and I think was indicative of some concerns about information that they are not yet well versed on, and partially due to personal stresses and over-reaction. I just got caught in the cross hairs for a few days. Generally, I just go eat chocolate when I am yelled at, which thus far in my life, has been a great coping strategy. As I tend to walk the edge a lot . A great quote from this week, was a doctors visit with my husband (RA or something, sudden onset), where I just wanted abx for him. I was pretty mad when we left, but I said to dh "well, at least we got abx". He said "I think he would have given me crack if it would have gotten you out of his office". Made me laugh in the midst of a rage. Yeah you should have told him that you will fly into a lyme rage :-) if you don't get the antibiotics!

Dr. T., Have you ever tested your patients who are band 41 positive with the Igenex test to see if they have bands 31 and 34 also?

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also. I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19) We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both. I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc? she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday. so thanks this seems timely for us, information to we can use. kay Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician. I hear you and have a list of lyme doctors as well (you and I have pm before on this, got the book, reading it) thanks again for all your info. Great! I have talked to so many people that I cannot remember. Let me know what you think of the book. I couldn't put it down.

Yes, if this is true -- about the CamK being indicative of autoimmune caused neuro-psych symptoms. Not just strep, but ANY bacterial infection. I wonder what Dr. Cunningham's thoughts are on this. A concern is certainly that a person gets "confirmation" though these CamK numbers and assumes it is solely strep related, when indeed it could be other bacterial infections are there instead of, or in addition to, strep. I wonder if people understand this? The key is obviously getting the right type of treatment for the underlying infection(s). Thanks for your thoughts. Mary Thanks for these post, I was wondering the same thing about the CamK if that was just strep. wondered if you had lyme would those numbers reflect also. I am on the fence between pandas and lyme disease right now...so many of my daughters symptoms point towards Pandas but also the lyme. The sudden onset though of separation anxiety after being exposed to strep (she did not present with strep) but 3 or so weeks later severe separation anxiety developed (age 19) We live in well known tick area and have pulled ticks, always tick check and seem to catch them right away but you never now...but I never remember early symptoms, unexplained fever, flulike, joint issues etc, always marked the calendar when ticks were removed (it has not been that many) and watched for symptoms. Only now the symptoms of the anxiety issues seems to fit both. I have the kit for the cunninghams haven't done it yet just received it, have an appointment with dr. b on tuesday and asking about lyme disease when we go. anyone know if he treats that as well? what lab he uses to test etc? she had a 28 day dose of augmetin 875 2x a day back in January and did well on it, back slid after going off, was then put on a 500mg 2x a day augmentin, had anxiety attacks with each dose (2 hours after taking dose) and then it would stop and she would be find till next dose. (this makes me wonder about lyme) Went off since anxiety attacks were bad had a meltdown about 5 days after. Tried the augmentin 875 again, no anxiety with it but it was really hard on her stomach. She is off everything right now waiting for tuesday. so thanks this seems timely for us, information to we can use. kay Most people never see the tick that gives them lyme. I have never pulled a tick off myself or my kids and yet we all have or have had lyme. (half of us are done with treatment and so far so good) I also do not remember the initial flu like symptoms in my kids. I don't know when they got it either. If you have symptoms of lyme and you live in an endemic area AND you pull ticks off yourself all the time, your chances are very good that you are dealing with lyme. If it is lyme you need to get on it quickly. Lyme is not an autoimmune problem as others have posted. It is an infection that will continue to grow in the body and cause multi system illness unless it is killed. It is an insidious pathogen like syphilis. It may be harder for someone who has autoimmune issues but you need to kill the spirochetes to get well. Some of the more lyme unaware doctors will say that there is no such thing as chronic lyme and anyone with lingering symptoms after a short course of antibiotics has "post lyme syndrome." This is not true b/c long term antibiotics get people well again. Many infectious diseases take a long time to kill so it should not be surprising that lyme is hard to treat. I don't know Dr. B, but unless he is an ilads-trained physician I really doubt he will be up on this. I know this is hard to believe but trust me, its true. Just read Cure Unknown by Pamela Weintraub and you will not rest until you get your child evaluated by a lyme literate physician.

Thanks. Those of us who have been through Lyme are eager to help others get the right diagnosis and treatment. If anyone wants the name of my doctor who is a lyme expert and holistic MD who also understands PANDAS, let me know. He is in the Washington, DC area and I highly recommend him. Just PM me.

I don't know what the c6lpe is but the best of the worst tests for lyme is the Labcorp Western blot but it is not reliable. Given your situation I would wonder if you ever got rid of lyme and whether your child could have been born with it having gotten it invitro. You should get the Igenex test for your child and get the CD57 test for yourself. The cd57 test will tell you how high your cd57 killer cells are and a score under 100 indicates an active lyme infection. The CDC criteria is designed for reporting cases of lyme and it is very stringent. Even the CDC says that lyme is a clinical diagnosis yet doctors foolishly rely on these antibody tests as patients get sicker. Many believe that the actual number of persons sick with lyme in this country is ten times the CDC number so that tells you something about their criteria. Do you have any symptoms that could be lyme?

Yes it should but you need to go to an ilads-trained doctor who will know the latest tricks to killing lyme and co-infections. In general infectious disease doctors are not up on lyme and in fact many of them do not even believe in chronic lyme disease. It could take you a long time to get well but your symptoms should go away unless some permanent damage has been done. All my joint pain went away but I was on antibiotics for over a year. Never felt better. Lyme specialists treat until the symptoms go away for over two months.

Happens all the time. Doctors do not want to diagnose lyme because medical boards give lyme specialists a hard time. Its really scary. I have a relative who was hosptialized with depression for ten days and they never paid attention to her knuckle pain, nightsweats, leg cramps, sensitivity to light, sensitivity to sound, brain fog, etc. Nope they just treated the symptom with psychotropic meds and guess what? She got worse and worse. I told her to ask her doctor to run a Western blot and her doctor refused b/c her screening test for lyme was negative. Told her that her problems were "emotional." She told me she felt like she was 110 years old. Finally we brought her to our doctor and had her tested and she has a serious case of lyme. Now she has an even longer road to recovery because of the ignorance of her doctors. She lives in the NE where lyme rates are through the roof.

Yes, yes, yes!! Those are lyme symptoms. There is this crazy controversy over lyme that is keeping people sick. As doctors argue over how many bands you need to have, lyme patients get sicker and sicker. If your son has even one lyme-specific band and those symptoms he almost definitely has lyme and needs to be treated asap. The key is getting treatment as early as possible. You need to see an ilads trained lyme specialist. Go to ilads.org and email them for the name of a doctor and ask your doctor to get your son on antibiotics in the meantime.

As I said in another post, I wouldn't wait for test results to get on antibiotics if your child has lyme symptoms. A lyme doctor would prescribe antibiotics while you wait for test results. It just kills me that it is not standard practice to give every child with PANDAS symptoms an Igenex lyme panel. The PANDAS doctors need to hook up with the lyme experts and makes sure they know how to spot lyme.

I agree. I was happy to see that Dr. T was quoting a lyme expert and clearly interested in pursuing these connections, however it is a mistake to call this "lyme-like". There are lyme experts all over the country who understand this and who know how to treat this with the right combination of antibiotics and/or anti-microbials. Its not some new phenomenon that needs to be studied. The info is out there.

If your daughter tested high then there is something there. The test you did does not test for band 31 and band 34 so your child could be positive right now if only she had the Igenex test. Dr. Jones, the world expert on treatment of lyme in children, considers even one lyme specific band justification to treat if a child he/she has lyme symptoms. 41 is not lyme specific but it is lyme suspicious, coupled with the high score on the screening test, it looks possible that she would be positive on a better test and AGAIN THE TEST DOESN'T MATTER IF YOU HAVE LYME SYMPTOMS. Its a clinical diagnosis and you need a lyme literate doctor to make that call. Lyme doctors would prescribe antibiotics immediately and would run the Igenex test. If this is lyme you do not want to give it a month to do any more damage. My son was misdiagnosed repeatedly by my former pediatrician and we are still paying the price almost two years later. Anybody in your family with these symptoms should be tested by Igenex. Feel free to pm me with any questions. lyme mom

Dr. T., I am so glad to hear you say this!! Dr. Crist was trained by a famous lyme specialist, Dr. Masters, who discovered a version of lyme carried by the Southern Stari tick. His research is very interesting. It would not surprise any lyme doctor though because they know that the testing is really unreliable for a number of reasons. I really think a lot of these kids with PANDAS symptoms could have lyme, Babesia or Bartonella but they are not showing up on the tests for one reason or another. Ilads-trained Lyme specialists do not rely soley on the antibody testing because they are notoriously unreliable unless you use a lab like Igenex. Lyme specialists do not even bother with the ELISA test b/c it is wrong 40% of the time. Igenex tests for two strains of lyme (there are 200 known strains of lyme) and all known antibodies for lyme (including 31 and 34, the ones they were going to base the lyme vaccine on). In addition, a very sick person, such as possibly a child with PANDAS symptoms, may not always produce antibodies because their immune systems are not functioning properly. Lyme doctors have found that in many cases someone who is suspected to have lyme will turn positive after antibiotic treatment because the immune system can finally mount a response. In addition, the other problem with the regular lyme tests is that the regular labs do not test for antibody bands 31 and 34 so a patient who is positive for band 41 who has not had an Igenex test could have two other positive bands that are lyme-specific and not know it. I think you should call Dr. Charles Ray Jones in New Haven and talk to him about your observations with band 41. He would be delighted to talk to you and he freely shares his knowledge with other doctors. (203-772-1123) He around 80 years old and has been treating lyme since it first exploded in Lyme, CN forty years ago. He has treated over 15,000 children with lyme from all over the world including my kids. He has also spoken at the Lyme-Autism conferences. I am also pasting a link to a paper you may want to read regarding the diagnosis and treatment of lyme which was written by Dr. Joseph Burrascano, a well respected lyme expert: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf This is considered a bible for lyme doctors. You could be the first PANDAS doctor to join ilads! This would make a lot of sense. Keep digging.. you're on to something here. Lyme Mom

Or these children had these infections all along and were handling them until hormonal change brought them to the surface. Lyme Disease infections often surface during periods of hormonal change (puberty, menopause, etc.). Lyme Mom

You are absolutely right about this.

So true!

Also there are probiotic pearls that are slow release that can be taken when you take antibiotics. I get them from my lyme doctor and they do not sell them in Whole foods or other stores. We take four a day and we have not had any issues with the gut in two years of antibiotics so they definitely work. The brand is therapeutics.