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Found 206 results

  1. Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it
  2. My dd12 is doing great so I wanted to give a positive update to you guys. After starting to see a lyme doc in DC in May and getting her on a good protocol and getting her MTHFR diagnosed, she has changed dramatically at long last! Brief history..... first strep age 11 months old chronic infections throughout childhood (strep, sinus, chest, ear) sensory processing disorder (age 5) gluten intolerance (age 6) PANDAS (age 7) Lyme (age 9) separation anxiety, unusual fears, OCD, emotional outbursts, unreasonable, etc. MTHFR mutation (age 11) She still reacts to strep but she recovers more quickly. She sleeps in her room by herself now and I was able to move into the downstairs master bedroom for the first time ever. She gets herself ready for school in the morning. Takes showers, brushes teeth, puts her dishes in the sink, cleans her room. Things are so close to what I think is normal. We still have a ways to go on lyme treatment and I don't know what to expect with the strep reactions. Right now, hoping we can get through the year with no strep infections. She's on Tindimax, Alinia, Diflucan, Thorne Methyl - Guard Plus, probiotics, Yucca Root, and Dandelion Root and a couple other things I can't remember now. She will probably get an abx protocol change in a month or so. Might stir some things up.
  3. The events I will tell you about occurred only 3 weeks ago. Suddenly and without warning I fell into a deep and dangerous depression. My mother was frightened at my state so she called the police and they found me huddled in a corner crying, not good. I explained to them that it is physical and I do not want to see another psychiatrist, I already see the best one in the state of florida. I showed them all my medical records. I showed them everything I was diagnosed with. I told the cops that I spend almost all day lying in bed with unspeakable and death-like fatigue and on top of it I have OCD. I AM DEPRESSED B/C I AM MISERABLE AND SICK. Once they hear "depression" and "ocd". I am baker acted but they promise to take me to the ER to get "fresh new eyes to look at my medical problems" b/c the cop is SOOO understanding since he has chrohn's. Insert "eye roll". I was taken to the ER and locked in a room for 8 hours, nobody came to bring me any food and water even though I told them I have TERRIBLE dysautonomia (hyperadrenergic pots) and need hydration as well as medication in the afternoon for tachycardia. They didn't bring me anything and it turns out they just forgot about me. None of the douchey doctors had heard of PANDAS. I told them I have movement disorder stuff. Fast forward to 10 pm, I have never felt so fatigued in all MY LIFE. A security guard takes me to the psych ward. I then have to do a 2 hour interview intake with a psych nurse, who in his defense was very caring and compassionate. By this point, I had periods where I thought I would pass out, I would drift in and out when finally in my bed. The psychiatrist who came in was my first doctor ever, THANK GOD, she had treated me for 4 years starting at age 18. She knew all the physical stuff and once she looked at my chart and saw that I'd tried almost every psychotropic medication, she let me go home. Sadly, they had NO recommendations for my depression which has not changed since that week. I share this experience to tell you don't go to the ER. The male psych nurse told me that right when they hear: "depression" "ocd" "insomnia" - to the psych ward you will be shipped. The ER doctors are in residency, arrogant, and don't know anything about complexity or rarity. The ER is way too busy and I was overlooked. This would be very detrimental to my health. That week I developed c-diff, worsening of tonsil and throat infection, UTI, and vag. yeast infection. I did not have any infections at the time I went into the hospital. I am still taking abx weeks later to treat them. I think the trip was far too hard on my body. I expected to be seen by a neurologist, someone, anyone, who was willing to help. AVOID THE ER.
  4. My son was diagnosed with Pandas in April and I recently got tested. My ASO is 276 (ref range 0-330) and my Dnase is 405 (ref range 0-120). What does this mean? Do I need abx treatment?
  5. For those who may be interested... http://myemail.constantcontact.com/Count-Yourself-In--Be-Part-of-the-PANDAS-PANS-Movement-.html?soid=1103470649803&aid=7V3cVvGYVeA
  6. Today, we met with two physicians at the Clinic at Boys Town Hospital. We met with a neurologist and an ENT. We were not rushed, encouraged to tell our LOONG story, and supported in the diagnosis of PANDAS/PANS. I think for anyone in the Midwest states of Iowa, Missouri, Kansas, or Nebraska; this would be a wonderful resource.
  7. My 10 y/o son was recently diagnosed with Lyme Disease. He also has Pandas. For the most part he hasn't had any classic lyme symptoms but we tested him because of the Pandas. We recently consulted with a naturopath that treats Lyme Disease and these are the medications recommended to start with. I'm looking for any information about these different abx, experiences people have had with them, side effects experienced, etc. He has taken azith for the Pandas but has never taken Cefdinir or Metronidazole. With school around the corner, I'm worried about starting him on this protocol and having him experience a lot of unpleasant side effects. Thanks! Cefdinir (treats spirochete) – 300 mg per day with breakfast Azithromycin (treats intracellular form of Borrelia and H. Pylori) – 250 mg per day with supper Metronidazole (treats cyst form of Borrelia and H. Pylori) – 250 mg with breakfast on Saturdays and Sundays only.
  8. Today's PANDAS Network.org newsletter provides information on the NE PANS/PANDAS Conference, including speaker list, cost, and how to register! http://myemail.constantcontact.com/Registration-Now-Open-for-NE-PANS-PANDAS-Conference-.html?soid=1103470649803&aid=Qvh9RP1aZkA
  9. My 10 y/o son was diagnosed with Pandas in May. His symptoms have greatly improved with antibiotic treatment. We recently tested for Lyme (no symptoms yet) and received his results yesterday. I don't talk with his Dr until next week so I was wondering if anyone can give me a heads up as to what the results mean and what sort of treatment I can expect? IgM results **23-25 kDa = Ind **31 kDa = ++ **34 kDa= Ind **39 kDa= Ind **41 kDa=+ **83-93 kDa= + All non-double starred bands were negative. IgG results **41 kDa=+ All other bands were negative. As I think back over the sequence of events, I'm wondering if he could have had Lyme/Strep at the same time. He was in a wooded area the day before Thanksgiving 2012. The next day (Thursday) he got sick...said his whole body ached, hard to walk, stomach ache, headache, etc. He was diagnosed with strep on Saturday. If he had been bitten by a tick would the symptoms have hit him overnight or does it take some time? He missed a week of school but after a round of zithromax he was fine. He wasn't diagnosed with Pandas until May. If he had Lyme could that have suppressed/messed up his immune system so that the strep then caused Pandas? I realize I may be stretching for an explanation here but I'm trying to make sense of everything. I don't remember any other time in which he was bitten by a tick or had a rash. Thanks for your help!
  10. My 10yo daughter is currently in-patient at Nichols Cottage in White Plains and not getting much help at all with her OCD. Does anyone know of a good CBT treatment nearby either in-patient or extensive (maybe an outpatient day program?)? Thanks, Valerie
  11. Hi all, Just hoping for some suggestions here: Recap: DS (23) diagnosed Dec. 09 with lyme, all bands positive and RMSF (was regular kid w/job/car/friends)....starting treating with 1st LLMD....DS very angry/let hair and beard grow (looked like mountain man), started listening to RAP music (which he never liked) all within 1st 6 months....started see Dr. B in Red Bank also. then switched LLMDs, all those symptoms went away and then starting being paranoid, calling police to confess car accident that he had had year earlier, washing hands, going in bathroom for long periods of time...at some point was slamming doors badly (broke molding off the doors)...then all that went away, stayed with that LLMD for 1 1/2 years...son still getting worse mentally. By this time on all kinds of abx, IV doxy for 9 months, shots..too many to lists DS started laughing daily, uncontrollably for long periods of time...still does to this day. Took a few months between LLMDs at this point and took DS to local doc who does treat lyme and wanted to test for metals / parasites....no parasite, metals fine....they found babesia. Starting treating that too. Fast forward to now...with new LLMD (8 months now) still seeing Dr. B who has prescribed numerous meds to try and "connect" and stop the everyday laughing, which is not only hard to listen to ALL day but it can get VERY loud, it must be hard on his body. He also "talks" to himself or someone (scary) because he'll talk during his laughing so its hard to make out what he says. Also will repeat a lot, either something from the TV or something we (his parents) are saying. If he's quiet, I can see his lips moving sometimes. FYI: He doesn't "talk" to us...sometimes 1 word answers but that's it. Sometimes the answers aren't correct for the question so we can't always count on that. The only thing that seems to work "maybe" is seroquel. I hate giving it to him but I figure he needs a break. It does quiet him down some but not always. Currently on Rifampin/Mino/pulse Tindamax (for possible Bart), and Malarone/Zhang's Artemesia (Babesia) and a lot of supplements. Positive for A1298c (?) mutation, positive myco, ASO AB high, and a few other things.....don't really want to list it all, too much. Also getting appt. with Dr. O in CT soon (hoping they can help shed light on why he's never gotten better). Didn't know about PANDAS back then, no one mentioned it...now thinking he had it also. Anyway, my question: Is there something you all give your children to help with psych symptoms or do you all just give abx / supps and hope/pray they just get better, these type of symptoms go away? Seeing Dr. B today and was hoping to suggest something...I research this ALL the time and come up empty. FYI: tried Neudexta and it didn't work. Still trying after 3+ years....all this is just horrible. His Mom
  12. My 10 y/o son had strep Nov 2012 and was diagnosed with Pandas in April 2013 after severe mood swings, depression, irritability and aggression started. He also has anxiety and Aspergers. Waiting for Lyme testing results. We treated with zith and penicillin for the pandas and also did a course of Flagyl for clostridia. Titers were at 1140...trending down but only at 1080 now. All of his symptoms are much better. The only tic he has is a vocal humming he makes when he watches tv or plays on the computer. Is that normal to have a tic only at a certain time? Dr suggested we try Augmentin but not sure I want to give him another antibiotic. Also, dr started him on Diflucan since he's been on so many antibiotics. Can the Diflucan cause diarrhea?
  13. Hi everyone: This is my first post and I've been searching and reading a ton of the older posts, especially regarding the Cunningham Panel test that's finally been released as a diagnostic tool. Looks like a lot of you were able to participate in the original studies too! We just got our Cunningham test back for my son and it says "likely" but I'm curious about one particular piece because we had a higher result. D1: 2000 (normal range 500-2000/mean 1056) D2: 2000 (normal range 2000-8000/mean 6000) Lyso: 80 (normal range 80-320/mean 147) Tub: 4000 (normal range 250-1000/mean 609) CaM: 151 (normal 53-130/mean 95) He was on azith for about 3 weeks when they did the blood draw - at about two weeks though, he lost the vocal tics and some major OCD issues (need for symmetry, repetitive behaviors, fingers/toes biting/picking). He still has some sensory issues (light and sounds) and anxiety. He was also tested for Lyme and it came back IGX and CDC positive on the IgM Western Blot. I'm seeing Tubulin linked to sydenham chorea but his number seems really high. Does anyone have any additional info? http://www.ncbi.nlm.nih.gov/pubmed/17513792 Thanks for any info/thoughts - Not sure that it really matters but you know how moms can be! ;-)
  14. Hi, Just received blood test back... ASO AB 375...3 months ago it was 368 DNASE-B AB 189...normal Streptozyme Screen....Positive A We've been treating lyme for 2 years then found Babesia, treating this for 1 year when I thought possibly he could also have PANDAS..only came across the ASO AB test after I had him tested because I had strep. My DS (23) doesn't speak, mentally disabled by all this, was "normal" before this all started. His babesia level is now 1:64, 3 months ago it as 1:1024 (normal is under 1:256) so I guess were doing much better as far as that's concerned...numbers going down. Now treating Bart (suspected). Last test was negative. So does this mean my DS does not have PANDAS? Within the 1st year this all started he did exhibit some PANDAS symptoms (looking back) OCD, rage. Both have "gone away". Didn't know about PANDAS back then. any thoughts?
  15. Hi We are battling a sons tics - getting all sorts of tests done - looking at Lyme, coxsackie, myco etc. While we will do everything in our power, I just need some assurance that this has worked for some people - that there are others who have put their children through all kinds of ABX medications, anti vitals etc and achieved success. I realize only folks who are still struggling stay on in the forums but I am hoping you have heard of success and that there are some of you who have achieved it. Just need to hear of some happy endings!
  16. Hi, My DS (23) has high levels of ammonia via blood test and high levels of lead (34) via urine provoked test. For ammonia, he was on Lactrolose for 30 days, 2 tablespoons once daily, and then we rechecked the levels and they actually went up...now doc wants him on it 2x day but because of everything else he takes we can't fit it in. Does anyone know of something else I can use besides Lactrolose. If so, for how long and how much? Also just received his urine results and it says high levels of Lead. How he could have gotten this I don't know. He was on 6 months of chelation pills (chemet) stopped in March. Should we go back on them or do IV chelation? Is there another way to deal with this? any thoughts are appreciated His Mom
  17. For those who have had genetic testing on their children, has anyone found a gene mutation for PNKD? This gene causes a form of dyskinesia. If your child is positive for this mutation, are you doing anything to address this concern? Do you find that it relates to their behavior during a PANDAS / PANS flare? What are the behaviors your child displays during a PANDAS / PANS flare? Looking for similarities since I know PANDAS / PANS presents differently in different children. Thanks for any input!!!
  18. Hi, Was just wondering if maybe it wouldn't be a good idea to have a running list of what people think of the certain antibiotics that worked best for certain diagnosis; PANDAS/lyme/bartonella/babesia/Myco P and some combos as well. I believe you need an intracellular and extracelluar drug along with cysts buster. Any drug not good on its own? Some that work better together? How long to stay on abx / combo to see if working before switching; 1 month..2 months? Rifampin? Zithromax? Minocycline? Omnicef (Cefindir)? Doxycycline? Plaquenil? Flagyl? Tindamax? Just thought for people just beginning to deal with this or not sure, they can maybe refer back to this for help.
  19. Hi, Did already posted that I had my 1st appt. with Dr. T in one month but now I'm wondering if Dr. B would be better. I only ask because of all the blood work that's going to be needed and also the money for the appt. I think Dr. B takes insurance, yes? I can only afford one of them, where do you think I should put my money? FYI: son been seeing LLMD (currently on #3) since 2009, only worse. His Mom
  20. Hi, I just made my 1st appt. with Dr. T in 1 month. No sure if my son (22) has PANDAS but everything fits. He's been treating w/a lyme doc for 3+ years and still not better. All mental, nothing physical. Got some blood work back today: ASO 372...down from 402 back in Oct. 2012 Ammonia levels higher...71....was 58 on last test Positive for Streptozyme scrren and streptozyme titer Copper low, 0.50 M. Pneumoniae AB (IGG), EIA...3.17 high, normal is <=90 IL-4 still high at 6.03....normal 0.0 - 4.1 Cystine...low 13.4 Hydoxproline..high 52.4 alpha-aminoadipate..high 2.6 Beta-alanine...high 19.3 A couple of others are high also. I told the office I'd bring these tests results with me but they said the Doctor would probably want us to take more test (his own blood work) Is there anything I should ask specifically? Bring with us? thank for any help His Mom
  21. Hi to all parents who have children with PANDAS. I'm new here and I joined this forum to share the success we had in treating Pandas with homeopathic remedy. We first encountered this syndrome when my youngest daughter turned 5. It was such a sudden change that I had to do a lot of research and experimenting. We have tried a lot of medicines from antibiotic to herbal supplements. There was a time my daughter was taking abt 6 to 8 supplements a day just so we can cure this horrible illness. This went on for abt 5 months then I found an interesting article abt homeopathy and made an appt to an homeopathic doctor the next day. She started treatment consisting of Ignatia, traumeel and spongia. A few days later, we saw remarkable results. My daughter was less hyperactive and more attentive. The Ocd completely stopped. However, there were still some goofy and jumpy moments. We tried these remedies for abt 3 months and her doctor tried anothe remedy which are carcinosin and echinacea. This I must say were much better than Ignatia. She is more behaved and attentive. Goofy movements were a lot less. We are on this remedy for a month now and I must say we are truly on the road to recovery.
  22. Hi, Been treating with an LLMD for 3+ years and just recently starting thinking this can be PANDAS also since my son isn't getting better. Anyway, brought it up to my LLMD and am starting my son on Aurgmention (?) and Biaxin. Just about the only 2 he hasn't tried. Can I ask what LLMD 's people are seeing. I have a list of PANDAS docs, thanks to this forum. I am now seeing an excellent LLMD (past 6 months), was just wondering. Always good to have a list Also, if someone PM's me, where is my inbox/mailbox...can't find it. thanks
  23. Hi, Was just wondering if there is a supplement or herb or anything that you give your child to help them when they are having an increase of symptoms, whether that's tics or behavior. Something to calm them (symptoms) down. thanks
  24. hi, my son, now 22, diagnosed with lyme and rocky mountain spotted fever in Dec. 09. Been treating every since but he has only gotten worse, all neurological, nothing physical. Recently positive for babesia in 2012. Again, still treating. I've been trying to research anything that might explain why his neurological symptoms are getting worse and now I think just maybe PANDAS is it. I had a strep infection a couple of months ago so they checked him out. Our family doc put him on amoxicillin for 10 days because she said his throat looked red (his culture came back negative). When I mentioned this to his LLMD, she did blood work and his ASO titers (strep infection, yes?) is very high so she put him on Moxatag for the month. In looking back thru years of blood work, I notice his ASO numbers have always been high. My son did have episodes of OCD about 6 months after being diagnosed with lyme. He's even worse now.....his main symptom is uncontrollable laughing, been doing it since 1st diagnosed but its gotten worse over the years...now its constant all day and into the night. None of his docs can ever figure out this symptom or seem to give us anything that's helps. Now getting to sleep is terrible, every night its a challenge. Some docs we've taken him to have said schizophrenia but others, including an "expect" in this field said no. He's so "lost and confused" that we can't ask him any questions, he can't answer us...he only says 1 word phrases and even those usually aren't the appropriate response to our question. I don't know much about PANDAS...is there hope? cure? can he get better? or is this like lyme, treat and pray? ANY help would be greatly appreciated, we just don't know what to do anymore thank you His Mom
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