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Found 15 results

  1. I am hoping to get some help making sense of our current flare. My son got PANS when he was three, but he really fell off a cliff two summers ago at age 7. It wasn't until last summer that we began treating it as PANS with Dr. P, and by October had determined mycoplasma and HHV-6 as triggers. Two steroid tapers and 6 months on azithromycin and his infection numbers were down to nothing and he was doing well (making new friends, laughing, his personality back). However, his IgG numbers, which were very low in October, continued to drop. We planned on doing IVIG this summer. In early June he had a tick bite with a bulls-eye rash and began treatment that day for Lyme. Unfortunately, he has been declining as the summer has gone on. He did two weeks on doxy, a week and a half off before we realized he was still being affected then two weeks on Ceftin. Last week he became very aggressive which had not happened since two years ago so we started a prednisolone taper. We were also just denied IVIG coverage by our insurance and are planning on paying for it ourselves. He just switched from Ceftin to Rifampin three days ago in case he has bartonella. On top of all that, he was stung four times by wasps last week (can that cause flaring?) which has restarted a major bee/hornet phobia and has him scared of being outside. He also just started saying he hates the feel of water which takes away our only activity this summer of swimming. He is scared of everything, says he "doesn't feel right" and has started saying he wants to "go home" which in the past has meant heaven. His sister also has an open sore on her bottom which could be staph (we are having it looked at today). Can this be causing the flare? I am a wreck trying to trouble shoot and keep my own mental health strong. I am anxious to do IVIG as soon as possible to alleviate his suffering and give him time at home before school starts, but I wonder if we have all the possible infections covered. Any thoughts? I would also love advice about preparing for IVIG. Did it help? How did you keep your child calm? Do they need other medications at the same time to make it more effective? Any questions I should be asking of his doctor? Thank you for your advice!
  2. I've recently undergone some diagnostic testing for Pans/Pandas, prompted by a strong clinical history and recurrent URI's including chronic sinusitis and petrous apex effusion. The only problem is with the exception of MRI findings, I don't have a single grain of physical evidence! All tests are coming back negative for ASO, ANA, and Mycoplamsa Pneumonia IgM antibodies. I'm finding this whole process very disheartening, especially in the light of my worsening condition and making progress in finding a resolvable cause and explanation. Has anyone else had a similar experience? Does this rule out the possibility of a diagnosis of PANDAS? As I'm not directly under the care of a Pandas friendly physician in my country, all testing has been initiated privately on my behalf from first principle. But I feel like for such a strong clinical history, I'm making no progress in pursuing an effective diagnosis. Any advise is always appreciated. many thanks
  3. Hi all, I have approval from Dr T to try minocycline, but was then told by his staff I'd have to visit him in person before they'd call the rx in. So, in the meantime I'm wondering if anyone knows anything about ordering minocycline online? I found many sites, and from the one below it seems to be the same rx, but for animals. The price is good - but I'm wondering if anyone has done this before? Am I crazy for considering this? Here's the site I'm looking at: http://www.allivet.com Also, here's a patent that was submitted for treating anxiety/ocd with minocycline - interesting! Has anyone tried it for their OCD/PANS? Treatment of anxiety disorders with minocycline: http://www.google.com/patents/WO2008104734A1?cl=en
  4. This was just published 2/12/16 about a 14 yo girl who came down with OCD and showed high myco p titers. I don't have access to read beyond the first page, where I believe they were going to start discussing treatment. Very interesting to see publications that address PANS and attribute its cause beyond that of strep to include viruses such as Mycoplasma pneumonia. Does anyone have access to this full article? Would love to read it in its entirety. http://online.liebertpub.com/doi/abs/10.1089/cap.2015.0080?journalCode=cap
  5. We finally have DS16's Cunningham Panel, IgeneX, and other lab results. Given the elevated CaMKII, there is definitely an autoimmune reaction, but it's not clear to me how intense, and whether any of the pathogens he tests positive to are likely to be the culprits, or if we need to look further. Cunningham panel: test = value (normal range; mean) DRD1 IgG = 500 (500-2,000; 1,056) DRD2L IgG = 4,000 (2,000-8,000; 6,000) LYSO-GM1 = 80 ( 80-320; 147) anti-Tubulin = 1,000 ( 250-1,000; 609) CaMKII = 184 ( 53-130; 95) The Ca++/Calmoudin-dependent protein kinase (CAM KII) activation seems high. But how high is it? Moleculera Lab writes that they now have a database of over 1000 patients, but their attached 2006 paper by Kirvan, Swedo, Snider, Cunningham only shows data on their first 16 PANDAS patients. DS's levels are higher than all but two of those reference kids with acute PANDAS, and almost as high as that in kids with Sydenham's chorea, but is that high enough to impress someone like Swedo or Dr. K? And more importantly, insurance companies to approve IVIG? I'm also fuzzy on how CAMKII activation would acount for the extreme anxiety, multisensory integration, choreiform movements, pessimistic thinking and other symptoms. Causative agents: MDL / IgeneX, stool pathology, etc: The good news is that there's no sign of Lyme or coinfections by ELISA or Western blot. He does have elevated antibodies to some pathogens (EBV, HHV-6, west nile virus, Mycoplasma) but PCR is negative. Does that mean those area all past infections, or simply dormant at the moment? For example, here's Epstein-Barr virus, tested in 11/2011 and 2016 Also tested now through MDL, which give unit-less index values, plus they test for virus fragments by PCR. MDL index 2011 2016 normal (neg <= 0.89, pos >=1.10) EBV EA IgM 0.52 EBV EA IgG 39 41 <100 u/mL 0.48 EBV VCA IgM 4 18 <100 0.09 EBV VCA IgG 1030 H 971 H <100 4.88 EBV EBNA IgM 0.21 EBV EBNA IgG 444 H 510 H < 100 1.83 EBV RT PCR negative OK, how to interpret this? I thought IgM disappears after a few months, not that there are low residual levels. And that IgG ought to drop with increasing years since an infection unless there are reactivations. So: Does a +15% in EBNA and quadrupling in IgM simply show uncertainty in lab results, or that there have been some reactivations since? Since EBV RT PCR is negative, does that mean we need not worry about EBV as a causative agent for his PANS, or simply that there's not been a reactivation the last month? How can there be such a difference between the two labs? I'd assumed the index is simply an absolute value / normal level, which fits the EA IgG, but not the VCA or EBNA values. Similarly, Mycoplasma pneumoniae: 2016 normal MDL index: IgM EIA 78 <770 0.38 IgG EIA 1.21 <0.90 1.43 PCR negative Does this indicate a distant infection? I read that IgM can last up to a few months, so I'm surprised to see any level of IgM. Unless it too can establish a latent intracellular infection, as theorized. Still, there are no smoking guns here. Ditto for HHV-6, West Nile Virus. The only other things that fournd were MARCONS in Dec, and 4+Mucoid Escnarchia coli and 3+ Citrobacter freundi complex in stool parastiology. Where do we go from here?
  6. Despite 15 months worth of antibiotics (mostly doxy and biaxin) our 12 year old dd has had high myco numbers for well over a year now. She is being treated with the assumption that she has an autoimmune encepalopathy (our doc does not seem to like using the term PANS.) After being out of school for all of 2014-15 she actually made it through full days in September and October of 2015 before things began to get worse again. She is now back on home bound instruction and while not as intense many of the original behavioral symptoms have returned. Though she has tested positive for Strep, Lyme, Coxsackie, and HHV6 these have mostly resolved. The constant through the last 18 months has been the persistently elevated myco titres. Interestingly though she also had a Myco PCR test done in Nov 2015 that came back negative. Can anyone explain how her IgM titres (indicative of a current infection) can be so high yet there be a negative PCR result? Rather than an actual infection is this "simply" immune dysregulation? She also has elevated IgE titres (785, negative is <200) despite being thoroughly tested for allergies and parasites, all of which came back negative. Myco p Results: Ref Range IgM >769 U/ml positive, IgG >320 U/ml positive 9/24/14 IgM 1632 U/ml (pos), IgG 817 U/ml (pos) 12/29/14 IgM 1310 U/ml (pos), IgG 810 U/ml (pos) 3/24/15 IgM 1586 U/ml (pos), IgG 1167 U/ml (pos) 6/23/15 IgM 1385 U/ml (pos), IgG 682 U/ml (pos) 9/17/15 IgM 1901 U/ml (pos), IgG 1399 U/ml (pos) 12/11/15 IgM 1652 U/ml (pos), IgG 1378 U/ml (pos) In July 2015 she had IVIG that did seem to alleviate many of the emotional issues, at least for a few months. As this was out of pocket it's not likely that we can afford to do this again. She has been under Dr Bs (NY) care and he has been great but it feels like we are at a dead end. We recently went to an infectious disease doc to look at this from a different perspective. To our surprise he did not dismiss our concerns but said that after speaking with several doctors plus a director at LabCorp (I guess to assess the veracity of the results) he suggested that we see a pediatric ID doc at a regional hospital...ie, he didn't know what to make of it. Watching her fall apart all over again has been tough enough on my wife and me but it is just crushing our daughter's spirit. If anyone has further treatment suggestions or doctors that have a handle on this we would appreciate your input.
  7. Hi all, I have very high titers of coxsackie a/b, mycoplasma p, EBV, HHV-6, and was rx'd Valtrex by Dr T. I started it last week for a few days (took half dose for 2 days, then full dose for 1 or 2 days?) and then stopped due to what I thought might be side effects. In general I was noticing an increase in anxiety and emotional lability. It's certainly possible this was coincidental and not related to Valtrex - I don't know. I really want to give it a try though and see if it helps me - Dr T wants me to too (we're hoping by reducing titers my anxiety/OCD sx will improve). Anyone out there with good, bad, or indifferent experiences?? How long did you take it and when did you notice improvement? Thank you all so much...
  8. I'm hoping some of you can weigh in on this. Our 11 year old dd was first diagnosed in Oct 2014 following sudden and severe onset of separation anxiety and mild ticing. She has been on home tutoring the entire school year as we wait for her symptoms to improve. Initially the only positive test was for mycoplasma but as we visited additional docs and had more testing other issues emerged. Dr Ts testing revealed high Coxsakie B IgG titres and high IgE titres. Follow up testing revealed no allergies or parasites, the typical cause of elevated IgE. After 2 months of Zithromax, 1 month of Biaxin, and 2 weeks of Levaquin along with a large variety of supplements we saw no improvement and decided to get another perspective...though Dr T was great and we will likely seek his opinion again in the future. In the meantime we are now seeing Dr B in the Hudson Valley who is much closer to home and has been fantastic. Thinking we should have seen some progress he ordered up even more tests. Despite previous negative Lyme tests (Elisa and Labcorp) she is positive on the Igenex test and also came back positive for Anti-DNase B Strep antibodies and high HHV 6 antibodies. Dr B changed her to minocycline for the Mycoplasma and added Ceftin for the Lyme. What is especially confounding is that she is essentially physically asymptomatic with just occasional mild headaches and mild lethargy. Meanwhile her psychiatric symptoms have been pretty severe. She seems to have an immune system that is just not functioning properly. If anyone has dealt with PANS/PANDAS with multifaceted triggers I'd love to hear about your experience, your doctors theories, and treatment options....thanks!
  9. Hi all, I received some results back today that I think might shed some light on the severe anxiety / OCD I've been dealing with for...years. Anyone out there with similar results and/or experiences?? Coxsackie A IgG/IgM Antibody Coxsackie A7 IgG 1:800 High titer Neg:<1:100 Coxsackie A9 IgG 1:1600 High titer Neg:<1:100 Coxsackie A16 IgG 1:1600 High titer Neg:<1:100 Coxsackie A24 IgG 1:1600 High titer Neg:<1:100 Coxsackie B Virus Antibodies Coxsackie B Virus, Type 1 1:320 High <1:10 Coxsackie B Virus, Type 2 1:80 High <1:10 Coxsackie B Virus, Type 3 1:160 High <1:10 Coxsackie B Virus, Type 5 1:160 High <1:10 Coxsackie B Virus, Type 6 1:80 High <1:10 Immunoglobulin G, Qn, Serum 764 mg/dL 700 - 1600 IgG, Subclass 1 408 Low mg/dL 422 - 1292 M pneumoniae IgG Abs 549 High U/mL 0 - 99 Negative: <100 Indeterminate: 100 - 320 Positive: >320 Immunoglobulin E Total 3 (LOW END) IU/mL 0 - 100
  10. Does anyone have experience with PANS caused strictly by a mycoplasma infection? Our previously confident, athletic, outgoing 11 yr old daughter is now more like a shy, emotionally volatile 5 year old. We first saw this change when she went to a short, 5 night sleep-away camp in July of this year. Without any hint that there would be a problem we received many desperate calls from the camp staff and were forced to come get her after 3 nights. Looking back she had missed a week of school back in late April with a cough that was so severe she literally couldn't go 10 seconds without coughing. Strep culture was negative so we never received a satisfactory diagnosis at the time. Needless to say but we did not see any connection at that time. Chalking it up to a bad case of home sickness my wife and I thought little more about it until several weeks later when she was set to end the summer with several short soccer and dance day camps. Even though she had attended these in past years and had great experiences she cried for hours, even while at camp. Her separation anxiety became even more pronounced when middle school began. Despite trying everything from dragging her to school, staying in the office while she attempted to attend class, shortening her day...nothing worked. Rather than taking the school social workers advise and seeking psychiatric help we took her to the pediatrician for a physical evaluation and blood work. He kindly called us on a Sunday, said she was physically fine, gave his diagnosis of "school phobia" and concurred that it was time to seek therapy as she had by then missed 2 weeks of school. At this point the school guidance counselor mentioned the word PANDAS to us for the first time. Curiosity piqued, and KNOWING this behavior was just not my kid I asked for a copy of the blood test results (I always do this now) which showed a high ELISA Lyme test. Armed with this we went to a Lyme Literate pediatrician who said it was very suspicious and performed a load of other blood work which revealed a high mycoplasma titre (IgM of 1632 and IgG of 817) though now a negative Lyme ELISA and negative Western Blot. It was at this point, in early October that the new pediatrician said she thought this was PANS. After a month of Zithromax IgM has dropped to 1317 and IgG to 762 both of which are still high. Her separation anxiety is now so severe she can't even attend soccer practice let alone school. Even home tutoring has been difficult with huge mood swings and such emotional sensitivity that the slightest, most gentle critique is met with running to her room and up to an hour of crying. We are now near Thanksgiving break with no sign that she will be able to attend school anytime soon. Outside of what I would describe as some deep, quick blinking when upset there are no tics nor are there any obvious OCD behaviors unless what we are witnessing is an expression of OCD. In addition to the antibiotic she is taking fish oil, reishi, glutathione, vitamin D, and probiotics. We also tried 500 mg of ibuprofen for 10 days without result. If anyone has words of wisdom, treatment ideas, has experience with a timeline to healing we would greatly appreciate hearing from you.
  11. This was posted on another forum and I thought it relevant to our story, and perhaps to those of others here. DD's major downturns have both coincided with MMR vaccinations. http://sanevax.org/gardasil-decision-will-always-regret/ Thanks "surprise"!
  12. I have been looking at the Gluten Free diet. I would like to know what symptoms it seems to help. I would love to hear any, success stories. I read the one on Jessica on the other forum with Safe Plate Diet. If you did this diet, how long to it take to see any relief with symptoms. Symptoms such as headaches, scalp pain, vocal tics, tremors, fatigue and low energy levels. What were the benefits of going GF? My son has no food allergies and has been tested with tissue sensitive gluten test and it was negative. I'm just wondering if putting my son on this diet would be worth the trouble. Rachel
  13. I have not received my Buhner Book on Lyme and coinfections yet through the mail. This question might be answered in there but I really need to know what band might specifically indicate mycoplasma infection from Lyme. I will be seeing the cardiologist tomorrow and want to approach him about running some more test. I am reading more on Lyme and its coinfections. I am wondering if my son's mycoplasma P antibody levels are from a tick bite or from the virus itself. There must be a way to tell the difference. Any help would be appreciated. I think these test can be run through IGNEX or Stoneybrook Labs.
  14. Hi All, I am new to this forum and have 3 children diagnosed with PANDAS/PANS-- DS15, DD10, and newly diagnosed DD6. Of the three, only DD10 has seen improvement with antibiotics. DS15 has been struggling since Jan. 2012, head and neck tics are indescribable, panic attacks, and OCD. Makes going to school very challenging. DD6 was diagnosed this past year, and we thought we were managing tics with antibiotics, as they were subtle and infrequent. She has ongoing severe separation anxiety. A few weeks ago, however, she too developed awful head and neck rolling tics. We see a direct correlation between gluten and dairy and DD6's tics, and have changed her diet. Lately, however, she is still ticcing shortly after eating even processed "gluten free" foods, so I am confused (unless they are cross-contaminated, as she has a peanut and flax allergy as well). Problem with all of my kids seems to be Mycoplasma. We cannot eradicate it from my house. I am beginning to wonder if my dog might even have it:)! Does anyone else have multiple children with PANS/PANDAS, rooted in Mycoplasma? If so, do your children have similar tics? And have you had any success in treating it? Many thanks for any responses. And best wishes to all here for speedy recovery.
  15. I am very new at all of this so please bear with me. After years of trying to figure out what was going on with my daughter, she recently tested positive for mycoplasm, bartonella, HHV6, and some bands of lyme(though inconclusive). Mycoplasm showed current activation and past (IgG and IgM). Our current struggles started in December with a severe bout of Influenza B that dragged on and on resulting in severe depression, rage, mild ocd, intrusive thoughts, and ultimately she stopped eating. Completely. Hospital stay was pretty useless and nobody would even remotely consider PANS/PANDAS (I begged). Local doc listened and ordered panels. Bingo...looks like mycoplasma is a BIG trigger for her. We started her on azithromycin but my daughter got so much worse on azithromycin that we had to stop after a couple of days (She tested resistant to amoxicillin). 12 days ago, she started doxycycline (100mg am and 100mg pm) to see if she tolerated it better. The first 4 days were an absolute nightmare with all the worst behaviors surfacing. Just when I was about to stop the doxycycline, everything changed.....my daughter came back. More like the new and improved version. She is the best we have seen her in, well, I can't even remember seeing her like this. Even she says that she feels different and she feels happy. I am trying to remain positive and enjoy this turnaround but I find myself waiting for the other shoe to drop. Is it possible that the doxycycline has hit the mycoplasma? I know it's not the first choice for treatment, but there is no other explanation that we know of and it seems to be helping. I still want to get her into a PANS specialist. This will take a long time and I don't know how long she should stay on the doxycycline. Has anyone gone this route before? Thank you all so much! QueenMother
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