msimon3

You may want to consider limiting your intake of manganese. New research suggests Borrelia use it to survive: http://www.whoi.edu/oceanus/feature/scientists-find-surprising-lyme-disease-bacteria-has-quirky-needs

Lyme at any age can be a challenge, but at age 3 there is the additional challenge of choosing the right antibiotic for someone so young. Each antibiotic has a recommended age range for proper use, and there a fewer antibiotics available for a 3 year old than a teen or adult. Moreover, many doctors select antibiotics with a balance of safety, cost, and effectiveness, and then introduce new antibiotics if the prior antibiotic does not seem to work. Augmentin is a common antibiotic used for many infections, primarily because of its safety, cost, and effectiveness. I think it might be a stretch to claim that it is not a good Lyme drug in general but it may not be effective for everyone. Here is an interesting study showing the in vitro effectiveness of a set of commonly used antibiotics for Lyme disease treatment: http://www.dovepress.com/evaluation-of-in-vitro-antibiotic-susceptibility-of-different-morpholo-peer-reviewed-article-IDR Ultimately, your friend should see a good LLMD with pediatric experience. You could poll this forum for recommendations in a certain area (e.g. NY, CT). Dr. Jones in CT would not be too far from the doctors you mentioned, and he has a history of working with children and Lyme disease.

Really interesting. Hopefully Claritin will be useful in curbing Borrelia. I wonder if the Borrelia will merely morph into cysts when denied Manganese: http://www.ncbi.nlm.nih.gov/pubmed/14961976

You may want to consider seeing a doctor who will order a blood test to look at immunological activity, and will repeat that test over time to look for a pattern of chronic infection. For example, we found the level of neutrophils and lymphocytes to be abnormal over time, which helped confirm we were dealing with an infectious process rather than a neurochemical process. Also note when your son has any clinical symptoms, such as a low grade fever, joint pain, numbness, or anything out of the ordinary. Too often a doctor will focus only on data or symptoms that relate to their field of expertise and fail to seek a comprehensive assessment of health. Keeping a log of those symptoms will not only aid you and your doctor when looking at the clinical history.

Great video, thank you so much for posting. I really liked Dr. Bransfield's presentation and I think that the neurological effects of Lyme are not well understood.

We tried both. The 5-day burst seemed inconclusive, so we then followed up with a taper. We saw symptoms go to nearly zero by the end of the taper, and then bounce back aggressively once the taper was over. That process was key in confirming the symptoms we saw were immune related.

So happy for you! Thank you for sharing your update. It is great and inspirational to see a success story like this.

Agree with all of the above. Doxycycline or Minocycline may also be used for neurological Lyme at late stages of the disease since they are effective in crossing into the brain and nervous tissue. Both drugs are good at killing Borrelia but they also can trigger the bacteria to morph into cyst form. For this reason, Lyme doctors often prescribe a cyst busting antibiotic as well, something like Tindamax or Flagyl. Regarding congenital Lyme, the traditional viewpoint is that it cannot be transmitted from mother to fetus. This viewpoint is based on the fact that nobody has proved it to be transmitted from mother to fetus. However, Borrelia has been positively identified in stillborn fetuses and breastmilk by some researchers. These days the CDC agrees that it can "infect the placenta" but stops short of saying it could infect the fetus. There are many diseases that cross the placenta, including Syphilis which is caused by a spirochete bacteria similar to Borrelia. Regarding the problem with doctors and insurance, I think many here have struggled with this same problem. There is not agreement on Lyme disease in the medical community, and each of us as consumers needs to ask ourselves "is this doctor qualified to counsel me on this? why?" Many of us conveniently see local doctors who are covered by our health insurance, but to cure this disease you need to go to a good doctor, period. Location and insurance coverage are sometimes barriers to seeing a good doctors and getting good treatment. Many here have had to go to a good doctor who is not local, who doesn't take their insurance, and who prescribes drugs which are not covered by insurance, in order to get well.

You have two strong indications of Lyme disease. The first is the positive culture from Advanced Labs , and the second is the Quest positive IgG band (kDa) 23 which is an antibody associated with outer surface protein C of the Borrelia bacteria that cause Lyme disease. See http://www.columbia-lyme.org/patients/ld_lab_test.html for more info on these types of tests, and be aware of the CDC 5/2 band diagnostic criteria that are heavily contested by progressive doctors and scientists. Look for an LLMD here: http://ilads.org/ilads_media/physician-referral/ And review some treatment guidelines here: http://www.ilads.org/lyme/treatment-guideline.php I would look for a treatment protocol that uses three antibiotics concurrently, one for each form of Borrelia (spriochete, cell wall deficient, and cyst) and likely one of these antibiotics will also be helpful in combating what appears to be an active Myco P infection.

Nightshades, tics, Lyme disease here. Found the nightshades allergy after an elimination diet, then confirmed it with challenge diets. Seems to primarily cause eczema in our case, and exacerbates the tics. Elimination of tomato, pepper, eggplant, potato did not eliminate the tics but did clear up the eczema. Cooked foods seem to be better tolerated than raw, however even cooked potatoes cause a reaction for us. Potato, like corn, was difficult to eliminate since it is put into many processed foods and sometimes labeled in vague ways like "modified food starch".

If you have a positive lab culture for Borrelia from Advanced Laboratory Services, then you have very compelling evidence to be treating for Lyme. Seek the help of a LLMD, and ask the board here for recommendations if you need them. People here are generally happy to help and will PM you with their guidance. Since your DS may have been struggling with Lyme for 6+ years, you should expect it will take some time to fight the infection and it will take diligence by you and your doctor(s). I would avoid any doctor who thinks a short course of antibiotics will cure Lyme. Rather, we have benefited from a therapy that uses a combination of antibiotics concurrently. There are three forms of Borrelia that are typically targeted during treatment, the spirochete, cell-wall deficient, and cyst forms. Each antibiotic should address treatment one of these forms. Each antibiotic may have a demonstrated effectiveness on killing Borrelia, so the type of antibiotic used is important. The antibiotics may or may not be cycled over time depending on the various treatment approaches for each doctor. Keeping good notes during treatment cycles may help gauge effectiveness of the treatment. Good luck with your next steps, you have a good support network here.

We see the same thing. It is very interesting. Symptoms invariably decrease when ill and not just with a cold. No idea why but it is very consistent for us.

If what we are looking at is a Western Blot test from Igenex, then yes these IgM results would be characterized as positive by Igenex due to two starred bands being positive (31 and 41).

Each LLMD will have their own protocol they prefer to use, but generally an -azole like Tinidazole or Metronidazole is used to destroy the cysts.

100% agree with Rowingmom. A LLMD will put together a protocol that attempts to kill the three known forms of Borrelia and avoid monotherapy which may lead to chronic infection / relapses. Eva Sapi has a nice study here on Doxy's performance: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/

We worked with a PA briefly and initially on the thorough intake process. Now we primarily see a pediatric CPNP and Dr J. We had similar concerns initially since we are a 10 hr drive from DC. I recall we either called or emailed them to get a good feel for their expertise before we made the trip. Once there in DC, we were pleased we made the trip. They were the first providers who sat down and went through a complete medical history from start to finish to get a "big picture" view -- all other providers in comparison seemed to focus only on areas related to their specialty.

flmom, if you are thinking about visiting Dr J in DC, it will be worth the trip. They are aware of PANS and neurological symptoms caused by Lyme. We've been happy working with them. I would pursue the antibiotics and work with a doctor who understands which antibiotics to use -- some are more effective than others when dealing with neurological infection.

I also recommend the Igenex Western Blot test -- it is more sensitive and it tests for two variants (297,B31) of B. burgdorferi and more bands for each variant. I would also get the coinfections panel done -- more expensive but well worth the time it may save you in the long run.

Have not used permethrin, but regularly use Picardin-based sprays. Lasts 8-10 hours, no smell, does not affect plastic (like DEET does). Ticks / mosquitos supposedly hate it.

Pik, many of the generic Lyme antibody tests are simply the Elisa test, which tests for antibodies to a synethetic protein modeled after a single variant of B. burgdorferi. This test has a broadly contested false negative rate. There are other tests that you can take, including Western Blot, as sf_mom indicated, and a nice list of the available types of tests can be found here: http://www.columbia-lyme.org/patients/ld_lab_test.html Overall, you might want to keep in mind that testing for Lyme is difficult, and there is no single test, or set of tests, that is both highly specific and highly sensitive, and therefore Lyme diagnosis remains a clinical diagnosis. You might also have an infection that is not Lyme, but has encephalitic or meningitic symptoms.

I hope the doctor who told you "tics are a form of anxiety" will admit that tics and OCD can have numerous causes and not just anxiety. While anxiety could definitely be a factor for your child, too often doctors suggest that anxiety is THE factor so they can write you a prescription and send you on your way. Of course I don't know your situation all that well, but I think it is worthy to consider that immediate onset of tics is also likely caused by active infection or a post-infection immune process or some other cause. In our child, we also notice a decrease in tics and OCD during illness. We haven't found an explanation for it, but since we believe the tics are a symptom of immune function we think that the wax and wane of tics over time or during events like illnesses is directly related to the state of the immune system at that point in time. While it might seem counter-intuitive to think that the tics go down, instead of up, during times of illness, at this point perhaps to most important observation to note is that the tics change during periods of illness. For some people, tics do not change during illness, nor are they caused by or related to immune function.

The Western Blot measures antibodies that stick to certain proteins denoted by the bands. These bands were standardized by breaking up and sorting the proteins of the Borrelia burgdorferi bacteria. For most commerical labs (e.g. Labcorp, Quest) the bacteria used was strain B31, while other labs like Igenex also use strain 297 to make a more comprehensive test. Band (kDa) 41 is flagellin, and will be positive for any bacteria that have flagella. Band 39 is flagellin for Borrelia, but many species and not just B. burgdorferi. Most LLMD's will recognize that the WB test is a tool to help with the diagnosis, but is not THE tool to determine diagnosis. The WB will be negative if your immune system is not making antibodies to strains B31 and 297 of B. burgdorferi, which might mean you do not have Lyme or it might also mean that you do and you are not making antibodies. Or it might also mean that you are infected with a different strain or species of Borrelia which we technical do not call Lyme disease even though it makes you ill (e.g. B. miyamotoi). The clinical symptoms you list certainly fit with Lyme disease. I would expect that your LLMD would focus on those symptoms rather than the WB test results, and try various treatment protocols to see if the symptoms get better or worse. The protocol needs to address variation of the physical forms of the Borrelia, specifically its spirochete, cell wall deficient, and cyst forms. Treatment for only one form may yield only temporary benefits and cause risk for continued infection and symptoms. And, of course, you could have strep *and* Lyme. But treating for both can be done with a single protocol.

I enjoy posing the following question to vaccine advocates and those on the fence: "How many recommended vaccines would you take before you stopped? 20? 100? 1,000? 10,000? At what point does taking all recommended vaccines seem dangerous to you?" Everyone I ask pauses and squirms at this question, because it reveals that 1) we know vaccines can help us build "herd immunity" but also 2) there is a cost for everything, and more of a good thing is not always good. While it is not generally accepted or proven that vaccines cause autism, there have been studies that indicate links between vaccines and various illnesses. Here is one that suggests that the use of adjuvants (the stuff they put in vaccines to amplify the immune response) correlates to a higher incidence of autism: http://www.ncbi.nlm.nih.gov/pubmed/22099159

Have you tested for other possible tick-borne infections, such as Babesia, Bartonella, or Ehrlichia? Excessive sweating is a typical clinical presentation of Babesia.

Based on your story, I would have thought that the symptoms would initially worsen as well. Two major things that stand out to me in your statement above: - The motor/vocal tics and anxiety began two years ago - These tics are getting worse after taking Metronidazole for 10 days It is plausible to consider your son's symptoms as caused by infection. Worsening symptoms may be due to the increase die off of bacteria from the antibiotic use, and the increase of immunological activity as a result. If the worsening of symptoms correlates to the use of antibiotics, then the cause might be a process called the Herxheimer reaction or "herx". Ironically, these worsening symptoms are actually helpful, as they can be used to help understand and confirm what causes the tics in the first place. Are any other symptoms worsening, for example any GI / diarrhea, or it is just the tics? I am also curious about the exclusion of PANS by means of fecal analysis -- there may be some validity there, but it seems as if most people are looking at antibodies in the blood to assess the possibility of PANS. What were the "bad bugs"? Metronidazole is a pretty strong and broad spectrum antibiotic. You see it used for C. diff. or anaerobic infections. It is frequently used for Lyme disease, because it is effective at destroying the cyst forms of the bacteria.