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Everything posted by msimon3

  1. The idea of PANDAS/PANS is that neuropsychiatric problems manifest after infection, and are caused by immune processes like inflammation. I don't think PANS is mature enough where doctors can pinpoint what is occurring in the body, when, and where, and there is much research trying to answer those questions. Generally it is suggested that the Basal Ganglia in the brain is involved in immune processes, and those processes cause neurological dysfunction. I agree with Airial95. If your doctor doesn't believe brain inflammation is involved with PANS, then they know little to nothing about
  2. The -cyclines are sometimes not tolerated well, although we have not tried them. We have tried Bactrim/Rifabutin/Cefdinir and tolerated it well.
  3. I second Hopeny's recommendation. I would seek out a LLMD in your area, one with a background in immunology or infectious disease, to help you navigate your medical history. It could be Lyme, or a coinfection, or something else. I can send you a message with the name of a doctor in the DC area if you are interested.
  4. For us, vocal and motor tics were the rapid onset symptom and very obvious. Soon after we noticed mild OCD, anxiety, and emotional mood swings that correlated with the severity of the tics. Over months and years we also noticed some IBS, recurring low fevers, frequent unexplained rashes, periodic joint pain in hips/feet/arms, periodic fatigue, and periodic numbness in hands and head. Sadly, our first line of doctors (pediatrician x 2, neurologist, allergist) all said tics are common, they usually go away, don't do anything for them. Only after we pursued many other doctors and started
  5. We had the same concerns with Strep and probiotics, but we found probiotics to be helpful during antibiotic treatments. We currently use Primal Defense for Kids which has no Streptococcus and tolerate it well: http://www.gardenoflife.com/Products-for-Life/Digestive-Health/Primal-Defense-Kids.aspx When you say 2.5 years of antibiotics, I assume you mean treatment full strength antibiotics rather than a prophylactic dose. We were in a similar position in the past, and currently work with a doctor who cycles treatments to avoid immune system suppression from long-term antibiotic use. So
  6. Yes, in our case the rapid onset of tics suggested that something other than food sensitivities were the cause. Based on some collateral IBS symptoms and the guidance of well meaning doctors we did embark on testing for allergies and eliminating diary/gluten/corn as potential causes. We thought we saw patterns between some foods and tic frequency/severity, but eliminating these foods did not lessen tics to a lasting or significant way. Since that time, we have learned that we are dealing with Lyme and Ehrlichia, and that the tics are likely a result of infection and inflammation. T
  7. We were told the same thing by pediatricians initially, just wait and they will go away. They didn't, they got much worse, and five years later we learned it was Lyme disease and we are now facing difficult and lengthy treatment. I would see an infectious disease specialist and start ruling out the possibility that the tics are neuropathy caused by infection.
  8. We tried eliminating gluten, dairy, and corn, and none made any lasting or significant change.
  9. Tics are frustrating since they could be caused by a number of factors, and you are right to perceive that many doctors will simply want to treat the symptom with neuroleptic drugs. In our situation, the waxing and waning of tics are a helpful indicator in "seeing" the current activity of the immunological process, and therefore the absolute last thing we would want to do is take drugs that would suppress tics. You might want to try to rule out infection and immunology as the source of your tics. If you are seeing Dr T in NJ, keep seeing him, he has a great mind and can help navigate t
  10. I don't disagree with Chemar on the risks of a steroid burst. As with any treatment, there is risk involved that you must consider with your doctor. A steroid burst is immunosuppressive and should be used with antibiotic treatment to avoid allowing infection to spread. Also consider that TS is a clinical diagnosis whose definition has changed over time, which makes it difficult to be certain what is 'true' Tourette's and what is not. There is no test for TS. What causes a tic is also not definitive: is it brain histamine? it is elevated dopamine? is it autoimmunity? it is microgl
  11. Lyme can cause neuropsychiatric symptoms often associated with PANDAS/PANS. It is doubtful that the symptoms could arise in one day as you mentioned, but instead is much more likely that an infection occurred earlier than Thanksgiving 2012 and went unnoticed. You should talk to a LLMD about your bands. If we are looking at Igenex results, IND means not strong enough to be positive, while +/++/+++ are increasing measures of positive results. Bands with ** are considered significant by Igenex based on their studies. See http://www.igenex.com/labtest.htm These bands are proteins tha
  12. You may want to consider the possibility of tics being a symptom of an active neurological infection or an effect of an autoimmune process: http://www.ncbi.nlm.nih.gov/pubmed/23230453 Many diseases could either infect your nervous tissue directly, like Lyme disease, or cause autoimmune reactions to nervous tissue due to cross-reactivity of the antigen, like M. Pneumoniae / PANDAS / PANS. I would stay away from CBT and neuroleptic drugs, and instead use the tics as a diagnostic measure of your health. Seek out the counsel of a good doctor who: - has a background in infectious disease
  13. Yes, we have experienced this as well, same range too: 99.2 - 100. For us, the fevers tends to run several days, then stop for a day, then recur.
  14. We did the full coinfection panel, and we were glad we did. Our rationale was that Lyme testing is not perfect, and more tests correlating to a positive result or a negative result would be good to have. Statistically speaking, more data would be better than less data, especially when confronting false positives or false negatives. Also, since Lyme is one of many tick-borne diseases then there is a good chance that we would see one or more coinfections, which we did. We also paired the Igenex test with a Western Blot from a standard lab (Labcorp) to look for any correlation on WB bands
  15. Shaunms, I agree with others here who say these are tics. Specifically, it looks like a complex motor tic involving the eyebrows and eyes, and shaking of the head. Your son would not be the first 6 year old boy to absolutely love Star Wars and Lego and want to talk about it all the time. It might be an OCD symptom if he is frequently unable to speak about other subjects without introducing Star Wars and Lego. These other symptoms you cited are also experienced by kids with PANDAS/PANS or Lyme Disease or some other infectious/immune pathology, with arguably less frequency amo
  16. It is good that you are second-guessing the diagnosis. You should get an Igenex Western Blot to verify your results. The CDC Lyme criteria is considered flawed and too narrow based on the opinion of many enlightened LLMDs. There is a rich history on how this happened, please read Cure Unknown or see Under Our Skin for a primer. C6 is an ELISA test for an antibody matches a single synthetic peptide derived from a protein from Borrelia. The Western Blot is a test that measures antibody stickiness to a range of proteins from Borrelia (e.g. OspA, OspB, OspC). On the Western Blot,
  17. Regarding IVIG, using donor blood products and risk of anaphylactic shock are risks you should consider even though it is generally considered to be safe. While you had a positive test for strep and Myco P, you should also rule out tick-borne disease (Lyme disease and its coinfections) as it can have neurological symptoms such as tics and OCD as well.
  18. Aside from IVIG, what is your treatment protocol? We are seeing big improvements in two months using a pulsed antibiotic regimen prescribed by our LLMD. Advocates of antibiotic pulsing say that sustained treatment doses of antibiotics can have an immunosuppressive effect, are stressful on the body, and can lead to bacterial resistance. Pulsing keeps the immune system engaged, is less stressful, and reduces risk of bacterial resistance. Time will tell. We are not free from symptoms yet, but this protocol has been noticeably effective compared to past protocols. Since IVIG is i
  19. Have you considered a Lyme test? If not, I would pursue an Igenex Western Blot at a minimum, and ideally go for a Lyme plus Coinfections test. My DS sounds much like yours, mostly motor tics that wax and wane and are not usually too much trouble. After five years of various suspicions and diagnoses (transient tic disorder, autism, tourettes, allergies, PANDAS) we finally found antibodies for Lyme (Borrelia), Myco Pneumoniae, and Erlichia. Determining the infection was half of the battle, treating it is the other half...
  20. Mirror UK created a documentary on the Le Roy, NY girls. See if you can spot a cameo from a certain doc from NJ... http://www.mirror.co.uk/tv/tv-previews/the-town-that-caught-tourettes-watch-video-1399314
  21. I agree with the guidance from philamom. You can get tics from neurological infections, and you need to rule out those infections. Lyme and Mycoplasma Pneumoniae need to be ruled out as well as strep. Also pay attention to any other symptoms (mood swings, lethargy, numbness, aches/pains, fevers, rashes, etc) that may indicate infection.
  22. Yes, it appears it can. Here is a case: http://www.tourette-gesellschaft.de/rbk2/012b_bts_lymediseasepresenting.htm Lyme can infect any area of the body, and create symptoms that very based on the site of infection or the person infected. For this reason, it is known as the "great imitator" and doctors often misdiagnose. Look into getting an Igenex test, at least the Western Blot. Igenex WB uses two variants of Borrelia and includes IgG and IgM bands that many labs exclude based on CDC-1994 Dearborn criteria. There is a large controversy regarding Lyme and the CDC that I won't
  23. Perhaps it is anxiety about eating the foods offered, or anxiety about the normal mealtime ritual? One idea that you could try is to take any possible pressure off the ritual -- leave food out in a non-mealtime area like a coffee table or playroom and see if he is eating it when you aren't around. Have you tried any kind of food, even junky snack foods, to discern between anxiety and pickiness?
  24. Lyme can vacillate between IgM and IgG perpetually. How the bacteria do this is unknown, but some think the bacteria goes into "cyst mode", evades the immune system, then re-emerges and triggers IgM again. http://cid.oxfordjournals.org/content/33/6/780.full http://www.jemsekspecialty.com/lyme_detail.php?sid=9
  25. khen: We consulted with Dr. Freij in the past for his expertise in infectious disease and PANDAS. Our impression was that he was patient and helpful, however his views on diagnosing and treating PANDAS/PANS may be more conservative than others. He spent a solid hour with us listening to our history and ultimately thought our timeline and symptoms and lack of positive titers ruled out PANDAS. Unlike some doctors we consulted, he was not outright dismissive but explained clearly the basis for his opinion. He also discussed with us his experience with IVIG, which is important to unde
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