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msimon3 last won the day on November 12 2017

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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 infection to the list of potential causes. Good luck and stay vigilant.
  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://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608 I suspect that your other symptoms may be due to a tick bite when you were 3 years old. Tick-borne disease is certainly possible in Germany: https://www.ncbi.nlm.nih.gov/pubmed/12141751 Have you seen a doctor who specializes in Lyme disease and immunology? You can attempt to locate a doctor here: https://www.ilads.org I wonder if you would be able to travel to the U.S. I have a very good doctor in Washington D.C. who specializes in tick-borne disease, neurology, and immunology. I will message you with his contact information.
  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 variety of symptoms, which included loose stool, odd rashes, slight recurring fevers, joint pain, numbness, lethargy, and moodiness. Symptoms that oddly waxed and waned. Symptoms that seemed to get better ironically during common colds. Seeking answers, we saw several doctors who took us down paths that led nowhere. Maybe it was diet. Maybe it was allergies. Maybe it was anxiety. Maybe it was an environmental trigger. Maybe it was Autism. Maybe it was Tourette's. Time spent with all those doctors did not help us, and meanwhile the illness advanced. Faced with no good options, my wife and I continued to research and seek doctors who might help. Taking what felt like a big chance, we met with a PANDAS/PANS doctor in NJ who confirmed the immune system was involved and showed sustained signs of infection. This doctor also recommended we consider Lyme disease, and ordered a tick-borne disease panel from Igenex. The results from that panel indicated immune markers for two tick-borne diseases. We quickly moved on to a Lyme-literate MD in Washington, D.C., who confirmed the our child's symptoms indicated Lyme disease. After several rounds of antibiotic therapy, our child gradually became better to the point of being symptom free. Nine years had elapsed since we saw the first motor tic. So is your situation the same as ours? I don't know. The are many potential causes of tics, and finding the true cause is a challenge. We started in a similar place as you are now. We saw similar symptoms and we were given similar advice. Ultimately every doctor (except the last two) failed to consider the set of all symptoms and correctly identify the disease. I hope you can find the cause of your child's tics soon. I would be happy to provide you any additional information about our history, and can do so over private message. Some useful links about Lyme and other tick-borne diseases: http://www.ilads.org/ https://www.columbia-lyme.org/lyme-disease
  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 each test to help you understand the potential for false positive results and false negative results respectively.
  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, such as Flagyl. Here are some links that may be helpful: http://columbia-lyme.org/patients/ld_chronic.html https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/
  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/ld_lab_test.html http://www.columbia-lyme.org/patients/controversies.html http://lymediseasechallenge.org/testing/ http://www.igenex.com/innovations3.pdf Keep in mind that a negative Lyme test (Elisa or WB) doesn't mean much. It means only that an antibody to a single protein on the Elisa was not found, or the right combination of antibodies were not found on the WB. A PCR (DNA) test is also very specific if positive, but also suffers from false negatives when no Borrelia is found in the sample even if Borrelia does reside in the body. The only reliable diagnosis of Lyme disease is a clinical diagnosis done by a competent and credible doctor.
  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 disease specialist? It may be helpful to run some blood panels and look for signs of chronic infection. We did just that in the past, and we used those results as validation that an active chronic infection existed. Regarding the comments the doctor made about autism, he doesn't seem credible on the subject.
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