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Everything posted by msimon3

  1. 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
  2. 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
  3. 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
  4. 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 exp
  5. 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.
  6. 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.
  7. So happy for you! Thank you for sharing your update. It is great and inspirational to see a success story like this.
  8. 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 b
  9. 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 gui
  10. 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".
  11. 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 b
  12. 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.
  13. 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).
  14. 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.
  15. 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/
  16. 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.
  17. 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.
  18. 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.
  19. 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.
  20. 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 an
  21. 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 i
  22. 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 he
  23. 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 betwee
  24. Have you tested for other possible tick-borne infections, such as Babesia, Bartonella, or Ehrlichia? Excessive sweating is a typical clinical presentation of Babesia.
  25. 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
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