lyme_mom

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria. Hi everybody, I have gotten so many inquiries on-line and off-line about Lyme Disease that I am pasting some important information below about the symptoms of Lyme Disease. The first blurb is from Dr. Jones, the top Lyme Pediatrician in the world who treated the first children who developed Lyme in Lyme, CN. Next I have pasted the symptoms from the Ilads.org website and lastly I have listed the tests that need to be run for lyme and associated diseases. There is a link at the bottom which will bring you to a very complete overview of Lyme and how to treat it by a top Lyme doctor. Lyme Mom Pediatric Overview: The Children of Lyme Disease Charles Ray Jones, MD Pediatrician, Private Practice, New Haven, CT Current research indicates that the Lyme disease bacteria, Borrelia burgdorferi, can be transmitted within hours after an infected tick attachment. Failure of parents and teachers to recognize Lyme disease early in its course can result in a child developing a chronic difficult to treat infection in the brain, eyes, joints, heart and elsewhere in the body. In my experience treating 5,000+ children birth to18 with Lyme disease, 50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school. They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child’s life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material. Although Lyme is usually transmitted by Ixodes scapularis (deer) and Lyme-like STARI (Southern tick-associated rash illness) by Amblyomma americanum (lone star) ticks, it can also be transmitted in utero and through breast milk. These children, frequently floppy with poor muscle tone, are irritable and ill early in their lives with frequent fevers, increased incidence of ear and throat infections, pneumonia, joint and body pain. They have gastroesophageal reflux, small windpipes (tracheomalacia), cataracts and other eye problems, developmental delay, learning disabilities, and psychiatric problems. All respond to months or years of continuous antibiotic therapy. When Lyme disease is a possible diagnosis, the children should be evaluated by a Lyme knowledgeable physician who will continue antibiotic therapy until all Lyme symptoms resolve. In most circumstances, Ixodes scapularis tick attachment should be treated with one month of antibiotic therapy. Lyme Symptom Checklist from Ilads.org: Persistent swollen glands Sore throat Fevers Sore soles, esp. in the AM Joint pain Fingers, toes Ankles, wrists Knees, elbows Hips, shoulders Joint swelling Fingers, toes Ankles, wrists Knees, elbows Hips, shoulders Unexplained back pain Stiffness of the joints or back Muscle pain or cramps Obvious muscle weakness Twitching of the face or other muscles Confusion, difficulty thinking Difficulty with concentration, reading, problem absorbing new information Word search, name block Forgetfulness, poor short term memory, poor attention Disorientation: getting lost, going to wrong places Speech errors- wrong word, misspeaking Mood swings, irritability, depression Anxiety, panic attacks Psychosis (hallucinations, delusions, paranoia, bipolar) Tremor Seizures Headache Light sensitivity Sound sensitivity Vision: double, blurry, floaters Ear pain Hearing: buzzing, ringing, decreased hearing Increased motion sickness, vertigo, spinning Off balance, “tippy” feeling Lightheadedness, wooziness, unavoidable need to sit or lie Tingling, numbness, burning or stabbing sensations, shooting pains, skin hypersensitivity Facial paralysis-Bell's Palsy Dental pain Neck creaks and cracks, stiffness, neck pain Fatigue, tired, poor stamina Insomnia, fractionated sleep, early awakening Excessive night time sleep Napping during the day Unexplained weight gain Unexplained weight loss Unexplained hair loss Pain in genital area Unexplained menstrual irregularity Unexplained milk production; breast pain Irritable bladder or bladder dysfunction Erectile dysfunction Loss of libido Queasy stomach or nausea Heartburn, stomach pain Constipation Diarrhea Low abdominal pain, cramps Heart murmur or valve prolapse? Heart palpitations or skips “Heart block” on EKG Chest wall pain or ribs sore Head congestion Breathlessness, “air hunger”, unexplained chronic cough Night sweats Exaggerated symptoms or worse hangover from alcohol Testing for Lyme and Coinfections The best test for lyme that is covered by insurance is the Labcorp Serum Western blot. The best tests for lyme are done by Igenex Labs in CA or Clongen Labs in Gaithersburg, MD. The igg and igm Western blots cost about $200. Neither Igenex nor Clongen take insurance. Other tests that lyme specialists run are for Babesia Duncani, Babesia Microti, Bartonella Henselae, Mycoplasma P., and Erlichia. None of these tests are completely reliable so diagnosis is based on symptoms. For more info go to http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf. This is a link to a comprehensive paper about Lyme and how to treat it by one of the leading lyme physicians in the country, Dr. Joseph Burrascano.

My holistic md (who is also a lyme specialist) uses the once monthly bicillin shots for PANDAS patients and he said they are having a lot of success. Next time I see him I will ask him how it works. We have been on antibiotics for 18 months for lyme and no problems. We take four probiotic pearls a day (kids too) and I buy the kind my doctor sells that can be taken at the same time as antibiotics. They are coated or something so they are not killed by the antibiotics. It is much more convenient to have my son pop all his pills at once. He is not too keen on taking them in the first place so its just easier to deal with it twice a day, rather than three or four times a day. The kind my doctor uses is "Integrative Therapeutics Probiotic Pearls." They are tiny and young kids could easily swallow them. My docs also check liver enzymes (aso) to make sure it isn't causing any problems. That aso number is high. Did your doctor tell you to do anything to help the liver? My doctor prescribed milk thistle and vitamin b complex when one of us had slightly elevated aso (120). My doctor is also a nutritionist. The fish oil, vitamin d and salt baths are great for him! lyme mom

Michael, My doctor told me the same thing about mold and high emfs. I have not noticed that wireless bothers my son but I am in the process of changing the way we use the internet so I can turn off my wireless router. We have cat 5 wiring we can use to go online. I am mainly concerned with having all this stuff off at night when he is sleeping. I also turned off our wireless phone at home and got a 900 megahurz model that is apparently much safer. I figured its worth a try b/c my son seems to be doing so much better sleeping in a lower emf location. Have you tested your bed where you sleep? I was told Radio Shack has a multi meter (811-32) that can be used to test emfs. I spoke to a consultant based in the midwest who will come analyze your house for this type of invisible pollution. Headaches, inability to focus and remember and sensitivity to fluorescent lights can be lyme symptoms too. The lights really bothered me too when I was sick with lyme. Its possible that you are getting those symptoms around high emfs b/c the lyme spirochetes are multiplying. I read that a large subset of lyme patients have mycoplasma P too. Several of my kids were IGG positive for it. I think the lyme drugs kill mycoplasma p. Have you never been tested for lyme? Lyme should be at the top of every doctor's list when these kind of symptoms arise. It is just so widespread these days. You could have your doctor run a cd57 test (by labcorp) too b/c you are an adult. If your score is depressed it indicates an active lyme infection. Insurance covers this test. If you want to get a lyme test that is covered by insurance the best one (instead of using a lab like igenex, which is the best test) is the Labcorp Serum Western blot according to my doctor. I know people who got positive results using that test and did not need to pay to get the igenex test. Do not get an Elisa alone or a Western blot reflux. They are wrong about 40 percent of the time. Good luck! lyme mom

Yes it can. It varies from person to person. Lyme moves in the body very slowly-everywhere from every few weeks to years later. I met a child who is so sick and she is 11. She wasn't properly treated when she was 4 and over the years she developed all sorts of medical issues. The doctors told her mother it couldn't be lyme. They told her she was depressed, ocd, add, etc. Now she knows she has lyme and she is SO sick. It will take years to get her well. You have to kill it while it is multiplying/moving apparently, thus the long term antibiotics. They say that illness or stress can cause it to come out if it is not properly treated. Puberty, menopause can be times when it rears its ugly head they say. Worried Dad, I really don't want to scare anyone but make you aware of how hard it is to know if your child has lyme/coinfections. Did you have to pay out of pocket about 200 dollars for the test? It really sounds like he might be referring to the cd57 test by labcorp, which is covered by insurance. It is the only test I know of for which a low score is indicative of an active lyme infection. It would be good if you could find the test. A depressed cd57 count is an indication of an active lyme infection and it is used quite often to determine if someone is done with their lyme treatment. However, Dr. Jones, the pediatric lyme specialist, told me it doesn't work with kids and he does not use it. Our first lyme doc used it for my kids but even he told me it can be off by up to 50 points either way, for what that is worth. Neither lyme expert we use now uses cd57s for my kids. My son had a really high cd57 result (400) but he is still sick with lyme so I guess it doesn't mean anything. There is no set timeframe for how slowly or quickly lyme can manifest itself. It depends on so many factors. The patients health, where they were bitten (on the head can go to brain faster), what the spirochetal load is in the body, what strain of lyme it is (there are 200 known strains) and whether any other infections are present all factor in. Vitamin D levels are often low too and getting them up is important. My son was probably bitten behind the ear and that is why he developed Bells Palsy so fast. It went right to the facial nerve and he already had a low level of lyme in his body for at least six months we think. He had a small mark behind his ear and that was where he swelled up five days before the Bells Palsy. I brought him to the pediatrician for the swelling and AGAIN they blew it off. They didn't look for a bite or ask if he had been camping. It was also in the month of June which is the peak month for lyme diagnosis. I later learned that boys ages 8 to 15 are statistically more likely to get lyme (I guess because they spend so much time outdoors). I have read that lyme will attack the weakest link in the body sometimes. If you have an injury to your knee or your shoulder you may get joint pain there. If someone has a susceptibility to depression they can become depressed with lyme. There is so much they do not yet understand about lyme. What is ARF? If I had a child with what I thought was PANDAS I would do every test recommended by the lyme doctors and have my child evaluated by a lyme literate doctor and member of ilads. If they tell you there is no sign of lyme then you have done all you can do vis a vis lyme. However, I think a lyme specialist would do a trial treatment for lyme with a child with numerous lyme symptoms to see if you get a herx reaction, even if test results are negative. The strep drugs may not be the right ones-You need to have an ilads doctor give your child the right combo of antibiotics that will kill it for good. You want to get rid of the micro-organism, not just cause it to hide out in your tissues until you go off the antibiotics. Thats what lyme does when you go on antibiotics. It changes into a cyst and hides out in the tissues where certain antibiotics can't reach it, only to reemerge after cessation of the antibiotics. Azithro and ceftin kill lyme in the tissues and work synergistically with amoxicillin or doxy that kill lyme in the blood. These are the tests that my 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. It could be the key to getting him well so don't be stressed.

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

Yes it can. It varies from person to person. Lyme moves in the body very slowly-everywhere from every few weeks to years later. I met a child who is so sick and she is 11. She wasn't properly treated when she was 4 and over the years she developed all sorts of medical issues. The doctors told her mother it couldn't be lyme. They told her she was depressed, ocd, add, etc. Now she knows she has lyme and she is SO sick. It will take years to get her well. You have to kill it while it is multiplying/moving apparently, thus the long term antibiotics. They say that illness or stress can cause it to come out if it is not properly treated. Puberty, menopause can be times when it rears its ugly head they say.

Susan, It would be important to test for lyme if any of your kids have symptoms because they could still have lyme and require treatment. There are very specific antibiotics used for lyme and it is hard to kill. Ilads.org or the Lyme Disease Association has a list of the many different symptoms that could be a sign of lyme. You should read the list and see what you think. The most helpful thing I read was the book Cure Unknown b/c you hear about all these families who had multiple children sick and what their symptoms were. It helped me understand what it looks like b/c I had to watch my kids for symptoms. You also need at least two antibiotics to kill lyme: one like amoxicillin (for younger children) or doxycyclene PLUS a broad spectrum antibiotic like azithromycin to kill lyme when it tries to hide in your tissues. They work together to corner the spirochete and keep it from hiding out in the body. In the case of CNS involvement sometimes IV antibiotics are necessary to kill the bacteria, as was the case for my son. Lyme actually changes its shape in the body to evade detection and treatment. This is why so many people cannot get rid of lyme. This coupled with the fact that most doctors do not know how to diagnose or treat it (much less the numerous possible coinfections) it is no wonder so many never get well. Many lyme patients don't get a high enough or long enough dose of antibiotics and the lyme just comes out after they go off the drugs. Keep in mind that the symptoms can be very subtle but over time they will get worse. Lyme cycles-symptoms come and go so it makes you think there is nothing really wrong. One last thing, if you have a coinfection like bartonella or Babesia you cannot get rid of lyme without also treating the coinfection.

Faith, Lyme Disease is the fastest growing infectious disease next to AIDS. Once thought to be limited to the Northeastern United States, Lyme and related tick illnesses are now coast to coast and it is expected to continually increase. There are few predators that eat the ticks and more and more ticks are infected with these microbes. Lyme is a spirochete like syphilis and it can cause multi-system illness, including the full range of psychiatric problems. Testing is not reliable and is only based on antibodies. Problem is lyme sometimes disables the immune system so you don't produce antibodies (but you still can have lyme). Also, there are like 200 strains of lyme and the test only tests for one or maybe two strains. For some crazy reason the tests that are covered by insurance (ELISA and Western blots) do not test for band 31 or 34, two of the most important markers for lyme. They wanted to create a vaccine based on these antibodies and figured everyone would be exposed to them through the vaccine. However, they pulled the vaccine off the market in 2001 but they never added bands 31 and 34 back to the test. This means you could be positive for lyme and get a negative result. In order to test for all known lyme antibodies you need to pay out of pocket for a test from Igenex Labs in CA or Clongen Labs in Gaithersburg. If you have any lyme-specific antibodies and you have lyme symptoms you might want to get treated for lyme. To further complicate the situation there are all kinds of other diseases that you can get from a tick that make lyme much harder to treat such as Bartonella, Babesia, Erlichia, Mycoplasma P. and others. The testing for these diseases is also not reliable. Igenex and Specialty Labs (Los Angeles, CA) offer a number of tests for co-infections. I didn't know anything about Lyme before my son was diagnosed with it. He developed Bells Palsy (the right side of his face was paralyzed) on Father's 2008. As I learned about lyme I couldn't believe that I was not aware of how to protect my kids from it and how to spot the symptoms. I also realized that my son had had lyme five months earlier when I brought him to the doctor complaining of headaches, sensitivity to noise and irritability. My pediatrician dismissed the headaches saying "don't worry about them unless they are incapacitating." I know that sounds really stupid now but at the time I figured he knew better. I got great advice from a naturopath the week my son got Bells Palsy. She said "get the whole family tested, find a lyme specialist and get the longest, highest dose of antibiotics you can get to kill it." I knew it was bad when a naturopath tells you to get all the drugs you can get! Within weeks we learned that we all had antibodies through the Igenex Western blot test (igg and igm). Now having antibodies doesn't mean you are sick but when my daughter started complaining that her ankles and her knees hurt, we knew it was lyme. Then I started getting migrating or surfing pain that went from one joint to the next. I watched my other son like a hawk and when he complained that his hip hurt and he acted a little tired the doctor started treating him too, just to be safe. You do not need to see the tick or have a tell tale bulls eye rash to have Lyme Disease. Thats a myth. None of us had either. To make a long story shorter several of us had to be treated for other infections too along the way (Babesia and Bartonella). This was based on the symptoms, not the test results. My oldest had to be on a picc line all summer so he could get IV doses of antibiotics which cross the blood brain barrier. It was kind of a nightmare. We consulted the top lyme pediatrician in the world and we have an excellent lyme MD who is an integrative physician locally. Everyone is better except for my son who had the Bells Palsy. He still has some symptoms and is still on the medication, after 18 months. Last week he developed a rash across his chest that looked like scratches and it was the first definitive proof that he has Bartonella (aka Cat Scratch Disease) in spite of the fact that his bartonella tests were negative repeatedly. The lyme doctors interpret this as a good sign that the Bartonella is finally being killed. He has had some herxheimer reactions (exacerbated symptoms due to the toxins released during the die off). Other than that he is doing pretty well and it doesn't interfere with school or other activities. Lyme is the great imitator and is often mistaken for other illnesses (MS, ALS, etc.). Knowing what I know about how hard it is to know if you have one of these illnesses, it seems to me that any parent of a child with PANDAS needs to know how to get their child fully evaluated for these illnesses. All children recover from lyme with the proper treatment, according to Dr. Charles Ray Jones, (New Haven, CN) the top lyme pediatrician in the world. He has been treating lyme in kids for about 40 years and he has had over 15,000 patients. The best doctors for diagnosing and treating tick-borne illnesses are members of ilads.org (International Lyme and Associated Diseases Society based in Bethesda, MD). Cure Unknown by Pamela Weintraub is an excellent and gripping book about lyme. Under our Skin is a documentary about lyme that is up for an Academy Award. You can google both. Also, Dr. Kenneth Boch has a book that talks a lot about PANDAS. Its called Healing the Epidemic of Childhood Disorders: Autism, ADHD, Allergy and Asthma. He and his brother, Dr. Stephen Bock, are really knowledgeable about all these things that can affect the brain (viruses, bacteria, yeast, etc.). Dr. Stephen Bock is a lyme specialist and member of ilads. They work together at the Rhinebeck Health Center in NY. So, it is common for people to have lyme and other tick illnesses for years and not know it. If I only my doctor or I knew that my son's symptoms could have been lyme, my so would have been spared this long drawn out treatment!

There are other infections that can cause these symptoms besides strep and most non lyme specialist doctors do not know how to test for them. See my other posts about lyme and related illnesses. The treatment for lyme is antibiotics and it is common for multiple children to have lyme b/c they play in the same place and can be bitten by the same lyme infected ticks. Here is an article about the other infections that can cause pandas: http://www.psychiatrictimes.com/display/article/10168/55056

You should read this entire article b/c it discusses PANDAS and different types of infections (including lyme related ones) that can cause symptoms. http://www.psychiatrictimes.com/display/article/10168/55056 I am pasting a relevant excerpt: Numerous studies document that infections, such as pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, syphilis, hepatitis C, and zoonotic (animal) diseases, can cause mental illness.9-13 The same syndrome may be caused by different infections in different individuals, and the same infection can cause different syndromes in different individuals. For example, obsessive-compulsive disorder has been caused by infection with Streptococcus, B burgdorferi, Japanese B encephalitis virus, herpes simplex virus 1, Borna disease virus, Epstein-Barr virus, and Mycoplasma, as well as by thepandemic influenza of 191814-16; I have also observed cases caused by Hong Kong influenza and coxsackievirus infection. Of course, many of these infections have also been shown to cause other psychiatric and somatic symptoms. Some infections result in residual injury even after the infection itself no longer persists, while other infections may persist in a chronic relapsing and remitting state. Chronic infections are most commonly viral, venereal, and vector-borne zoonotic.8 Tick-borne diseases and chronic infectious diseases B burgdorferi, the principal organism associated with Lyme borreliosis, is one of the most complex bacteria known to man. In addition, a tick bite can presumably transmit more than 1 disease-causing organism. Thus, 2 major clinical hurdles in diagnosis and management are the absence of a clear therapeutic end point in treating Lyme borreliosis and the potential presence of tick-borne coinfections that may complicate the course of the illness.3 The more common interactive coinfections may be caused by M fermentans, Mycoplasma pneumoniae, B microti, Ba- besia WA-1, Chlamydia pneumoniae, Ehrlichia, Anaplasma, and B henselae, and multiple viruses and fungi.2,3,17 When multiple microbes grow together, they can promote immunosuppressive effects and cause marked symbiotic changes that alter their functioning.18

It really depends on what the rash looks like. My son's rash looked like a cat had scratched him (7 red lines running diagonally on his chest). You can find them on the back and hips too. Any rash plus PANDAS symptoms would make me suspicious for lyme or bartonella, especially if it appears while taking azithro. The azithro could be killing Bartonella or it could be killing lyme. It would be better to have azithro AND rifampin if Bartonella is suspected. I believe that some PANDAS patients could actually have an undiagnosed Bartonella infection mistaken for PANDAS. The difference is that Bartonella is an active infection that will get worse without antibiotics, not necessarily an overactive immune system. Do you have a picture of the rash to show your doctor? What did it look like? The Lyme Disease Association has pictures of rashes. They come in all shapes and sizes. Dr. Jones in CN uses Igenex for the Lyme Western blot (both igg and igm-costs 200) and specialty laboratories in CA (800-421-7110.) My bill says it costs 135 but insurance paid for most of it. He and the other lyme mds (ilads) do not rely on the test results but the symptoms. For a full list of symptoms of lyme and coinfections go to ilads.org. You may see your son's symptoms in a different light if you read through that list. It is very hard to treat Bartonella. We r 18 months into my son's treatment and we probably have another six months to go. The treat for two months past the last symptom to be sure it is gone.

In another post I mentioned that Bartonella can cause symptoms that look like PANDAS. The top lyme pediatrician in the country told me this. You need multiple antibiotics to kill Bartonella and/or lyme. THere is no one treatment b/c it depends on the symptoms that the patient has. Our lyme docs used rifampin and azithro initially for lyme and bartonella but now my son is on doryx (slow release doxy) and azithro and a homeopathic remedy called sprio (that kills lyme and coinfections). You need a qualified lyme specialist to go over all his symptoms and I personally would never see an infectious disease doctor for lyme given the legal battle between ISDA and the CN Attorney General over the Infectious Disease Society's financial conflicts of interest vis a vis lyme protocols. (google Attorney General Blumenthal and Lyme Disease). I would go to an ilads trained doctor asap. (ilads.org) b/c these docs meet each year to go over lyme treatments (what works, what doesn't, what the symptoms of each infection look like, etc.) They know the latest thinking on how to attack these bugs. I read something about them not using levaquin anymore for lyme so you really want to seek an opinion from an ilads doc so you don't get the wrong or outdated treatment.

Because unfortunately my husband and I, armed with our business degrees, are making all the decisions, because there isn't one doctor who seems to understand all of this. As I'm sure many here have, we've gotten a lot of conflicting advice. My son had positive strep titers and high Cam Kinase, so we wanted to pursue that. The DAN doc said we'd have to go off the Azith and do the other antibiotic for several months. Also, he was saying he didn't think Alex has PANDAS, but actually has Lyme Disease, which didn't seem right. I think P.Mom is right, Bartonella is treated with Doxycycline, although I'd have to check my notes. At this point, given the lack of success with Azith, we may do this next. Bartonella is usually treated with Rifampin and another antibiotic like doxy or azithro but it varies, depending on what symptoms the patient has. Bactrim may also kill Bartonella.

Bartonella is a serious tick borne illness (AKA cat scratch disease) and it can make you very ill. It can cause OCD and other neurological problems according the world's top lyme pediatrician, Dr. Charles Ray Jones (New Haven,CN). He may still have lyme in spite of the negative test. Igenex Labs in Calif offers the best lyme western blot but there are many fals negatives. I would get him treated asap by a knowledgeable lyme physician who is ilads-trained (ilads.org). My son has lyme and Bartonella and he had Bells Palsy. We are seeing Dr. Jones and Dr. Beals who works in DC and in MD. WHen you treat Bartonella or lyme you can get exacerbated symptoms from the toxins that are released when you kill the bacteria. My son is going through this now (headaches, leg pain, chest pain, etc.) He finally got a Bartonella rash last week, 18 months into his lyme treatment! This can happen when you are killing the bacteria.

There are no blood tests which can "rule out" Lyme Disease because it is a clinical diagnosis. The tests only test for lyme antibodies and not everyone produces antibodies to lyme, especially since lyme can disable one's immune system. Also if you test too early you will get a false negative. The ELISA test is a screening test designed for reporting, not diagnosis. It is wrong 40 percent of the time. The lyme experts say that there are very few false positive lyme results but many false negatives. The best tests lyme tests are Western blot tests done by Igenex Labs in California and Clongen in Gaithersburg, MD. They are not covered by insurance and run approx 200 dollars for both IGG and IGM. These two labs test for bands 31 and 34, which are highly specific to lyme and which the insurance-covered tests do not test for. Makes no sense to not test for these antibodies but it has something to do with the old failed lyme vaccine that was based on band 31. Any child with lyme-specific antibodies (not necessarily a positive test) and lyme symptoms might benefit from a trial of antibiotics to see if it helps the symptoms or makes them worse. A lyme literate doctor would know. During the lyme die-off toxins are released that exacerbate symptoms temporarily. If you suspect lyme and want to rule it out you need to see an ilads-trained doctor (ilads.org) who treats this everyday. There are tests for other tick illnesses related to lyme like BArtonella and Babesia too and most docs have no idea how to spot it. The antibiotics should not affect the results of the lyme test unless your child has been on them for a really long time.

Dr. Jones is one of our lyme doctors and he is pretty amazing. Its great you are going to see him. He probably gave your son Rifampin with the Azithromycin b/c he thought he might have Bartonella, a tick borne illness (aka cat scratch disease) that often accompanies lyme disease which can cause OCD symptoms. Rifampin is used to treat Bartonella. Dr. Jones thought my son had Bartonella but over the 18 months he has been treated for lyme he has tested negative for Bartonella over four times. Last week he finally got a rash that looked like scratches from a cat and it was the first proof that he has Bartonella. The doctors interpret this as an effect of the die off of Bartonella. My son doesn't have PANDAS but I asked Dr. Jones about my cousin's child who has OCD/PANDAS and whether lyme could cause OCD. He said Bartonella can cause OCD but not lyme. Nobody knows what lyme and the other tick illnesses look like in children like Dr. Jones. You are in excellent hands with him.