mama2alex

Here's a link to some pictures of Lyme rashes - as you can see they don't all look the same: http://www.lyme.org/gallery/rashes.html Also,this is from the ILADS web site regarding rashes: "Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy."

Also, this is from the ILADS web site, Top Ten Tips to Prevent Chronic Lyme: "Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. As a result, the CDC relies on physicians to make a clinical diagnosis based on a patient's symptoms, health history, and exposure risks. Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are present, even without a positive test, in an effort to prevent the development of chronic Lyme disease." http://www.ilads.org/lyme_disease/lyme_tips.html

I would believe the LLMD, as these are the doctors who are actually treating Lyme and getting people well. The IDSA docs seem to be in collective denial. Lyme can be passed in utero, so you should definitely have your kids checked out. I'm another one who's had symptoms of chronic fatigue and fibromyalgia. All my labs are completely negative, but my son is positive for Bartonella and they believe he has Lyme. He's doing much better with treatment for Bartonella/Lyme. So I'm moving forward with my own treatment without positive test results. A good book to read to understand what's going on in the medical community regarding Lyme is "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub.

Hi Ziva, I'm really sorry you are dealing with all this - it is overwhelming, I know. The soreness is a real red flag for Lyme, so that warrants some follow-up for sure. The fact that they respond well to abx indicates there is a bacterial infection, but you don't know exactly what it is - it may be just strep or there may be other bacterias in play. I think running the Igenex test on your ds7 makes a lot of sense. Did Dr. T in NJ give you a copy of the Western Blot results? You might want to request that and post the results here for feedback. I believe he uses the CDC criteria, so you can have several bands positive and they deem it a negative. If you're doing Igenex, I would also do the testing for co-infections, especially Bartonella, which has very similar symptoms to PANDAS. And I do believe its worth the time, money and effort of travel to see an LLMD because they can look at symptoms as well as test results, and will run tests on other infections that could be contributing to the psychiatric symptoms. And if I were you I would wait to do IVIG until you've figured out whether they have Lyme. Lyme is a clinical diagnosis, so I think your money would be best spent on the LLMD right now. If you find out that neither of your kids have Lyme, then IVIG might make sense.

Be aware that Dr. T uses the CDC criteria to rule out Lyme, and believes it is very rare in PANDAS kids. Since so many kids from this forum have tested positive and/or been clinically diagnosed with Lyme, I'm not sure he's right about that. You can read his opinion on Lyme and PANDAS as stated on the PANDAS Network website under "Diagnostic Tests," "Immunological Workup," then click on "Lyme Testing Remarks." Lyme is a clinical diagnosis, just like PANDAS, so I don't really understand using the CDC's surveillance criteria to diagnose it in kids who have many of the symptoms. If you want to understand the history and politics behind the CDC's testing criteria, a good book is Pamela Winetraub's "Cure Unknown: Inside the Lyme Epidemic."

Once you find someone to run the tests, I would recommend testing for Lyme and coinfections as well. Many parents on this forum have discovered their kids (and often the moms too) have Lyme. This is a clinical diagnosis, like PANDAS, but testing is a good start. A Lyme doctor can and will run all kinds of tests, including strep, Lyme, coinfections, viruses, molds, etc, so this may be a good place to start. Many Lyme docs have experience with PANDAS - strep is often a problem in Lyme patients, so they know how to look for it and deal with it. I believe there is a good Lyme doctor in CO (not sure exactly where) that several on this forum have gone to. Our son has Lyme, Bartonella and PANDAS, and is doing MUCH better under the care of a Lyme doctor.

Our ds10 has been on Rifampin since Sept '10 and we are rotating to Septra (same as Bactrim) in a month. He is also currently on Cipro and Ceftin (just rotated to Ceftin from Zithromax), as well as BEG spray in the nose. We see Dr. H in CA. We are doing a CMP and CBC every 6 to 8 weeks - no problems so far.

I thought many on this forum might be interested in this. They don't mention PANDAS, (although they do mention OCD, Tourettes, ADHD, allergies, etc) and it seems they could benefit from the participation of PANDAS parents. This is in its infancy, and all they're asking for now is to sign up to be on their mailing list. Here's the link: http://canaryparty.org/ Here's a synopsis: We are a group of citizens who are disturbed by the increasingly failing health of those in our society. Among us are those who have been injured by the medical industry, those with children or loved ones who have been harmed and killed by the medical industry, medical professionals who are upset with what is happening in their field and those who endeavor to preserve human health in spite of increasingly corrupt and failing medical establishment. In 2010, a group of parents of children who were suffering from neurological and autoimmune disorders, and who had been active for years in their efforts to get mainstream medicine to address the causes of, and find treatments for, their children's poor health, faced the realization that while they had been earnest in their engagement of both the private medical industry and government public health officials, the medical establishment was not working in good faith with them. They decided that if anything was to be done about the epidemic levels of childhood chronic illness in the US, it would have to be a result of real political pressure to clean up the corruption in the medical establishment that was allowing bad pharmaceuticals, bad medical practices and bad public health policy to assault human health on such a wide scale. They began talking with those injured by medicine in other ways, those concerned with parental rights, with lack of choices in health care options, with environmental pollution, with nutrition, and with the encroachment of the medical industrial complex on the basic rights of the individual to practice informed consent in medical care. In the spring of 2011, it became clear that waiting to do something was no longer an option. It was time to launch The Canary Party, because the medical establishment is not paying attention to the sick canaries in our society that are telling us that there are serious problems that need to be addressed, and that if they are not, we must expect that society will begin to suffer greater and greater collapse as more and more people succumb to the diseases and disorders rampant today. It was time to stop asking the medical establishment to pay attention to the epidemic of illness, and demand that they do, or replace them with their betters who would. And so The Canary Party was born.

I thought many on this forum might be interested in this. They don't mention Lyme Disease, (although they do mention OCD, Tourettes, ADHD, allergies, etc) and it seems they could benefit from the participation of Lyme parents and patients. This is in its infancy, and all they're asking for now is to sign up to be on their mailing list. Here's the link: http://canaryparty.org/ Here's a synopsis: We are a group of citizens who are disturbed by the increasingly failing health of those in our society. Among us are those who have been injured by the medical industry, those with children or loved ones who have been harmed and killed by the medical industry, medical professionals who are upset with what is happening in their field and those who endeavor to preserve human health in spite of increasingly corrupt and failing medical establishment. In 2010, a group of parents of children who were suffering from neurological and autoimmune disorders, and who had been active for years in their efforts to get mainstream medicine to address the causes of, and find treatments for, their children's poor health, faced the realization that while they had been earnest in their engagement of both the private medical industry and government public health officials, the medical establishment was not working in good faith with them. They decided that if anything was to be done about the epidemic levels of childhood chronic illness in the US, it would have to be a result of real political pressure to clean up the corruption in the medical establishment that was allowing bad pharmaceuticals, bad medical practices and bad public health policy to assault human health on such a wide scale. They began talking with those injured by medicine in other ways, those concerned with parental rights, with lack of choices in health care options, with environmental pollution, with nutrition, and with the encroachment of the medical industrial complex on the basic rights of the individual to practice informed consent in medical care. In the spring of 2011, it became clear that waiting to do something was no longer an option. It was time to launch The Canary Party, because the medical establishment is not paying attention to the sick canaries in our society that are telling us that there are serious problems that need to be addressed, and that if they are not, we must expect that society will begin to suffer greater and greater collapse as more and more people succumb to the diseases and disorders rampant today. It was time to stop asking the medical establishment to pay attention to the epidemic of illness, and demand that they do, or replace them with their betters who would. And so The Canary Party was born.

Hi Norcal Mom, I'm not sure if you're aware, but CA allows a "philosophical" exemption. We used this when my son entered kindergarten and it was really easy. I just had to fill out a form at the school office (and endure the stares of the school secretary ). The NVIC website indicates that CA still allows this exemption, so you shouldn't need a doctor's note. Is your school telling you something else?

I'm so sorry you're having to deal with this! You might try calling the National Vaccine Information Center at 703-938-0342. I've called them before and they are very helpful and supportive in situations like this. Also, I pulled a list of NJ-relevant links from their website: NJ Alliance for Informed Choice in Vaccination: http://www.njaicv.org, email@njaicv.org Specific to exemptions: http://www.njaicv.org/law.htm New Jersey Coalition for Vaccination Choice: www.njvaccinationchoice.org Maybe one of these first two groups can help you or refer you to someone who can help you. The State of New Jersey website: www.state.nj.us/health/cd/chap14.htm State of New Jersey Immunization Program: http://www.state.nj.us/health/cd/vpdphome.htm State of New Jersey Immunization Requirements for Higher Education: http://www.state.nj.us/health/cd/college.htm State of New Jersey Immunization Requirements for Public/Private Schools and Child Care: http://www.state.nj.us/health/cd/chap14.pdf

This film made my blood boil! We've gone from health care being about getting people well to it being all about profit. I know these drugs do help some people, but doctors have become so casual about handing them out and pharmaceutical companies are pushing, pushing, pushing them. I saw a drug rep in our LLMD's office a few months ago when we were there late. Of course the rep was a pretty young woman, very vivacious, and she brought chocolate and other goodies for the office staff. I think I saw Seroquel in her bag - some kind of psych med. Anyway, it made me sick. I know our doctor is very careful in prescribing these things, only doing it when its absolutely necessary to hold things together while treating the underlying infection, but I don't think the vast majority of doctors take that approach. They just throw psych meds at kids and consider that a solution, without warning the parents about what could happen. Anyway, pardon my rant. Thanks for sharing this.

We used Igenex to test for Lyme and co-infections. You can find more info on this over on the Lyme forum.

Hi Wilma, We did IVIG twice after our son tested positive for Bartonella. We didn't understand the seriousness of a Bartonella infection at the time, and were having a hard time believing our son could have Lyme, given his negative test and no history of tick bite that we knew of. The first IVIG helped temporarily, but we had to go through several very rough weeks first. The good effects lasted for about 3 months, and then he got a virus and we lost all gains. We're not sure if the 2nd one helped, as we started Bartonella/Lyme treatment a month after the IVIG, and never saw a change either way in those weeks between IVIG and starting Bartonella/Lyme treatment. Also, just because a child has Bartonella, doesn't mean steroids won't temporarily ease their PANDAS symptoms. It is possible to have a Bartonella infection AND have an autoimmune response to illness (PANDAS/PITAND) at the same time, as our son does. Our son was helped temporarily by steroids on two occasions. Steroids are not recommended for Lyme patients because they suppress the immune system (this is how they reduce inflammation), and can therefore interfere with ridding the body of Lyme/co-infections.

I looked all over the web site and couldn't find this. Can you post a link? Thanks!

My son tested positive for Bartonella, but negative for Lyme. Our LLMD said it would be rare for him to have the Bartonella without Lyme and it would look different (in terms of symptoms/behaviors). So its likely she has Lyme. Our son has had issues since birth as well (although more subtle until the onset of PANDAS), and we suspect I had Lyme/Bartonella before he was born. I never saw a tick on myself, but had a mysterious rash a few years before my son was born. Right after he was born, I started getting sick and after two years had chronic fatigue, lots of pain in various places, severe insomnia, memory loss, and frequent severe illnesses. Lyme/Bartonella and PANDAS are not mutually exclusive. Its not one or the other, but if she has Bartonella, and possibly Lyme, you need to take her to a very good LLMD. They can also treat the strep issues and any other infections that are simmering. None of the PANDAS docs, to my knowledge, are fully versed in Lyme/coinfections. Our son had a Cam Kinase of 152 - this does not rule out Lyme or any other chronic infection. I believe you already saw a Lyme doc, but he wasn't that helpful? Is that right? If so, just find another one, and make sure he/she is ILADS-trained and get opinions from those on this forum before going to see them.

DS10 had a severe asthma flare this past week due to combination of a cold and exposure to a cat (long story - we do know better). Exposure was Sunday, his oxygen was 93 by Monday, 30mg oral steroids given Monday night, oxygen down to 86 Tues afternoon, hospitalized Tuesday evening when they couldn't get the oxygen up much with 4 back to back nebulizer treatments. He's been on 30mg of prednisone twice a day since Wednesday. Today we're reducing it to 15mg twice a day for max of 5 more days. I'm keeping him on it for now, as he's still wheezing quite a bit, although his oxygen is up to 96. He was developing a fever Monday, so we thought he was developing his 7th pneumonia, but I think we averted that with abx. Of course my concern now is that this will set back his Lyme/Bartonella treatment, but haven't had a chance to discuss this with a doctor yet, as all the mainstream docs at the pediatrician's office and hospital look sideways at me when I mention Lyme/Bartonella. Maybe his immune system is so shot already that we're relying primarily on the abx to kill the Lyme/Bartonella, so the steroids won't make much of a difference? We'll see our LLMD later this week if we can get in, but wondered if anyone here had experience with this. I am fried from worry and lack of sleep (breathing tx round the clock and of course no sleep at all for 2 nights at the hospital), so I could use some encouragement and/or information on personal experiences with steroid tx during Lyme/coinfections treatment.

There's definitely a possibility that Lyme would show up on a test 3 years later, depending on her immune system. I think its also worth running co-infections at the same time - my ds tested positive for Bartonella while testing negative for Lyme. As for talking to Nick Harris, he runs the lab and is knowledgeable about Lyme, but he's not a treating physician and he's never seen your daughter. Like PANDAS, Lyme/co-infections has to be a clinical diagnosis because the tests so often miss the mark. I would consult with an ILADS-trained LLMD once you have the test results back - whether they look positive or negative to you. We had the positive Bartonella test in our hands for over a year before we went to an LLMD. We didn't really believe it could be Lyme. I've come to realize that the politics of this disease have interfered with the public learning much about it. I would really educate yourself about it, including reading "Cure Unknown" by Pamela Winetraub, before dismissing it as a possibility.

Fish oil causes my son to chew on his clothes incessantly. We don't give it to him. I don't know if its inflammation, per se, an allergy - just not sure what the mechanism is.

Fantastic news! I loved the artcle, by the way. Nice job!!

Hi Wilma, I'm really sorry you are going through this ordeal. I don't know what medications she's taking other than the steroid, but is it possible to just take her off all medications for a bit to see where she settles out? Or just take her off the steroids and see if that helps? We did a 5 day steroid burst and that helped our son tremendously for a short while, BUT he got worse while on the steroids and didn't start getting better until he'd been off them for a couple of days. I disagree with some others who suggested keeping her on the steroid for 30 days when she is on the verge of being put in a psychiatric hospital (possibly because of the steroid). Obviously you'd need to speak to your PANDAS doctor about this first, but it could be good just to check in with where she is without the medication(s), so you know if they are doing this to her or something else is. YOu can always put her back on anything that seems to actually be helping her. Just a thought. You're in my prayers.

ouch...per disease? Not per tick? How do you know which diseases (in addition to lyme) to test for? Yes it was $65 per disease, so $325 total, but well worth it for the peace of mind. We could have tested for just borrelia (Lyme Disease), or for that and one or two other co-infections, but we didn't feel comfortable not knowing exactly what diseases it was carrying. Now we know my husband has been exposed to borrelia and not bartonella, erlichiosis, babesia, etc, so we can treat and watch for symptoms accordingly. This was a real eye-opener for him, as he was walking on a paved path and assumed he was safe from ticks. And he was completely shocked at the test results - I guess deep down he still had trouble believing that Lyme really exists in Northern CA, despite what we've gone through with our son. He's planning to share his experience with our cub scout leadership, so that hopefully the boys can start learning about Lyme Disease prevention. This has been glaringly absent in the preparations for the upcoming camping trip. I think most people around here just don't know that its a real risk.

I called the LLMD when we started Rifampin because I was concerned about the orange color of his urine first thing in the a.m (he takes it at night). They said its "common" but did not say anything about it being a good sign or something that you necessarily need to see to know its being absorbed. This doesn't definitively answer your question, but just wanted to let you know.

He just plucked it off his leg with his fingers, but I don't think this is the recommended technique. I think you're supposed to use tweezers. He had a little plastic container in his car, so he stuck it in that and sealed it with masking tape when he got home. The next day I drove it down to the Igenex lab, which is in Palo Alto. They will test a tick for borrelia, bartonella, babesia, erlichia, and one other disease I can't remember. It takes 7 - 10 business days. It was expensive - $65 per disease tested - but we're glad we did it. The peace of mind is worth it, since he's taking abx to fight borellia and now we know he doesn't need to be treated for coinfections.

My husband was bitten by a tick two weeks ago while walking on Sawyer Camp Trail (a paved running/biking trail) in San Mateo. We had the tick tested and it came back positive for borrelia (Lyme Disease). Thankfully, it was not infected with other diseases such as Bartonella, Babesia, etc. For those in Northern CA who might be skeptical that Lyme is a possibility in CA, as we were a year ago, I wanted to post these results. Lyme is definitely here. The Lyme doc put my husband on doxycycline 3 days after he was bitten, just to be safe, and now we're so thankful we took that precaution.