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msimon3

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  1. Our pediatrician told us something similar-- don't worry about the tics, they will go away. That was bad advice for us. The tics didn't go away, and many years later, and more symptoms later like fevers, rashes, numbness, joint pain, chronically elevated white blood cells, we learned it was Lyme disease. The tics were a symptom of the infection, and they resolved when the infection was treated. However, since tics could be caused by many things, it is prudent to consider possible causes and then rule them in or out. For that reason, perhaps consider adding immunology / neurological
  2. Hi Dawn, does your son have any other symptoms ? Sometimes tics are one of many symptoms experienced, and sometimes tics are the sole symptom. Symptoms may help you focus on which next steps will be most beneficial for you. I would recommend seeing an immunologist to rule-in or rule-out any infectious disease with some detailed blood work on red and white blood cells.
  3. Zanzarah, thank you for writing and you will find a good information and people here on this site. Your symptoms are very similar to my experience with Lyme disease, specifically: tics dizzyness moodiness poor handwriting sensitive gut problems headaches and neck pain / meningitis You mention you had a tick bite at age 14, then you had night sweats. Your naturopath said you cannot process meat protein. Do you feel bad after eating meat now? If so, you may indeed have a meat allergy called Alpha-gal which caused by a tick bite: https://ww
  4. Aaron, many of the symptoms you describe are typical of Lyme disease. My advice is to discontinue the homeopathy, and instead find a doctor who will treat Lyme disease with antibiotics. Doxycycline and Metronidazole have been shown to be very effective at treating Borrelia infections, and those antibiotics were the most effective in my experience. Here is a relevant study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132871/
  5. Edsonr, reading your post felt like reading my own memories. I have read many stories on this board over the years, but none as similar as yours is to mine. So I respond here with hope and urgency, as I wish I had received more information and better guidance ten years ago when our child first exhibited tics. Unfortunately, we were initially guided by two pediatricians to follow the approach of "do nothing, it will go away" which we did for two years. That guidance was bad, and following it was a critical mistake. Over time, the original symptoms of motor tics slowly grew into a v
  6. Dr J = Dr Jemsek in DC?
  7. If your doctor is not familiar with Igenex then perhaps consider finding a LLMD. Regardless of which doctor you use, Igenex will characterize results and indicate positive or negative status which we found helpful. If you suspect a tick bite, the Igenex Tick-Borne Disease panel will test a variety of infections likely from a tick bite. Keep in mind that ticks can transmit a variety of diseases, and testing for diseases other than B. burgdorferi might be helpful in confirming a tick bite if you get positive results. Igenex should be able to tell you the specificity and sensitivity for
  8. If the antibiotic schedule is a treatment for Lyme Disease, then minocycline or doxycycline are effective at reducing bacteria counts however they also create a significant amount of round-body forms or "persisters". The medical community splits here with the IDSA camp saying these persisters are not a risk, and the ILADS camp saying these persisters are the cause of ongoing disease. You will need to make a decision and choose a side. If you think the persisters are a risk, ask your doctor about using a therapy that incorporates antibiotics known to eliminate round-body forms of borrelia, s
  9. I recently observed a similar reduction in tics when lying flat. It's very curious.
  10. Low neutrophils is called neutropenia, and it may have several causes: https://en.wikipedia.org/wiki/Neutropenia For years we observed perpetually low neutrophils and high lymphocytes that coincided with clinical symptoms. Initially we suspected PANDAS but instead we found infection with Borrelia (Lyme disease) and Ehrlichia. After treatment, the clinical symptoms were greatly reduced and the neutrophils and lymphocytes returned to normal values. We used neutrophils and lymphocytes as one measure to determine the level of infection and efficacy of treatment.
  11. Numbness is a symptom of Lyme that we experienced as well. We didn't noticed hot/cold however the skin has different sensory receptors for hot and cold than it does for touch and pressure. http://www.columbia-lyme.org/patients/ld_lyme_symptoms.html
  12. p66 (kDa) is inspecific to Borrelia, meaning it could be an antibody to other bacteria. Regarding why you would use Igenex for a Western Blot test, the short answer is that it will give better positive results that a CDC-based test that Labcorp or Quest offer. The Igenex test looks at two strains of Borrelia instead of one and it tests for more bands (segments of protein to which an antibody will 'stick') -- in particular bands 31 and 34 which are specific to Borrelia. The link above from ILADS is a good one. Here are some other helpful links: http://www.columbia-lyme.org/patients
  13. I am sorry to hear about your experience, and it must have been incredibly disappointing to be treated in that manner. Sadly, I count myself among many parents here who go through similar experiences as we try to locate a doctor who is credible, knowledgeable, and helpful. Once you find a good doctor, one who listens, things will get better. I have used sites like vitals.com and healthgrades.com to research doctor ratings. Those sites might be worth a look for leaving feedback about your experience. Regarding your daughter, have you considered seeing an immunologist or infectious di
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