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msimon3

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msimon3 last won the day on November 12 2017

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About msimon3

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  1. 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/
  2. msimon3

    My Sons tics, sharing our story

    kathyw I will private message you
  3. msimon3

    My Sons tics, sharing our story

    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
  4. msimon3

    Jemsek Clinic?

    Dr J = Dr Jemsek in DC?
  5. msimon3

    Lyme tests?

    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.
  6. 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/
  7. I recently observed a similar reduction in tics when lying flat. It's very curious.
  8. msimon3

    Absolute Neutrophils low

    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.
  9. msimon3

    Skin Numbness

    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
  10. 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.
  11. 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.
  12. I use this site often: http://www.ncbi.nlm.nih.gov/pubmed Some Lyme-related links I like: http://www.columbia-lyme.org/ http://www.ilads.org/lyme/about-lyme.php http://jemsekspecialty.com/lyme_detail/ A prudent course of action might be to record your health symptoms and pair a clinical assessment of those symptoms with any testing that might confirm a diagnosis or rule it out. For example, you cited OCD and rashes, but you also mentioned you are "tired out all the time" and have occasional loss of appetite. If you start with the basis that you are a health normal person, then any symptoms you have may be helpful in identifying a possible infection. Keep a journal of your health symptoms and note the frequency and severity of the symptoms. When you see a doctor, a doctor worthy of your cause will be interested in the journal. You could also seek some inexpensive blood analysis to look for any indication of disease or infection. In my case, a simple white blood cell test repeated over time suggested a systemic and chronic infection process. Pursuing a cure with or without health insurance is indeed possible, and you are already on the right path by recognizing your health symptoms and asking questions and looking for answers. Keep doing so until you are healthy. As others here will tell you, finding a cure can take a lot of time, money, and effort. Stay vigilant and good luck!
  13. You may want consider Lyme disease and possibly another tick-borne infectious disease like Ehrlichia or Bartonella. In some cases, Lyme disease produces a ring shaped rash called Erythema Migrans. Ehrlichia and Bartonella also can produce rashes in people however the appearance of these rashes will differ from Lyme disease. I mention these three diseases because they are common co-infections for a tick bite, and you cited your rashes appear different (rings then smaller with no shape). There is a lot of information about Lyme disease on this board for you to consider, including neurological symptoms of infection. A Lyme co-infection panel from Igenex labs is what I would pursue with your doctor, and it would show any antibodies your body is making to the three diseases I mentioned. If it was ringworm, the rash would likely become itchy and scaly, and spread until treated. A dermatologist can easily diagnose ringworm and can also perform a skin scrape to confirm.
  14. msimon3

    negative lyme and strep test

    Do you recall which bands were positive and which lab you used? If you were positive on Lyme, you might want to focus your efforts there. Here is a list of common coinfections: https://www.lymedisease.org/lyme-basics/co-infections/about-co-infections/ There are tests for these coinfections and some of these tests have specificity (false positive) or sensitivity (false negative) percentages that should be considered with any result. One line of testing that was very helpful for us was to run monthly red and white blood cell panels. We saw a trend in those test that indicated a sustained infection, and we eventually hit on a treatment that reduced the symptoms and also indicated resolution of infection on the white blood cell panel.
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