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Hi, Just had appt. with new doc and one thing they gave me was Deplin (15 mg.) for my DS (23) to try...supposed to split the pill in 2. I've been reading however that your supposed to also take B12 and B6 yet the doc didn't mention either of those two. Should I call and inquire before giving this? thanks

Hi, Was just given this to try....Haven't found too much info on it, has anyone had any experience with this? thanks

Hi, My DS (23) lately has been very touchy..meaning touching/playing with EVERYTHING...sees the garlic on the counter and starts peeling it...takes the salt shaker or pepper and puts it in whatever is around like iced tea...just basically playing with everything, can't seem to sit still. If we go somewhere he will pick up whatever is around and play with it. Is this considered ticcing? OCD?....If so then I guess he does have pandas as well as lyme. thanks for any thoughts his mom

Hi all, I thinking of taking my DS (23) off all abx to treat yeast...He's been laughing for years and i think its yeast. I've tried periodically to treat with difflucan among other things and yet still laughing uncontrollably. Gave him a 30 day course but didn't seem to do much. Of course while trying to treat yeast he's still been on abx so maybe you can't treat both at the same time. I have him on Candicid Forte at the moment, anyone have any experience with this? If I take him off abx will he regress so bad its not worth it? How long to treat?...could take months then of course back on abx. I keep reading that you have to heal the gut to get better. I'm sure his gut is shot. He's been on abx for over 4 years. any thoughts? frakfrak

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.

Hi, Thinking of going to see Dr. S in Wilton CT. She works with Dr. O. She sees adults, my DS is 23 and I think might have some PANDAS going on in addition to lyme/babeisa. Already have a lyme doc and looking for someone for "everything else": meth issues / supplements to take, etc. I have read a lot about Dr. O but can't find anything on Dr. S. Has anyone here any experience with her? The appt. is very expensive and I want to make sure its worth it. thank you frikfrak

My 11 y/o son is homozygous for COMT V158M and H62H, MAO-A and MTRR. He is heterozygous for MTHFR C677T, A1298C, AHCY-01, 19 and CBS C699T/A360A. He is having tons of problems with depression, mood, anxiety, etc. He refused to go to school 4 days last week. He also has Lyme and Pandas. We are working with a functional medicine dr and put him on Prozac last week but now I'm reading that an SSRI with his COMT mutations may not be the right way to go….that maybe an SNRI is a better option. After 3 days on the Prozac he seems more irritable than before. Can anyone help?

Have any of you been fortunate to find a Specialist that will communicate with you by email or a nurse line. The specialist I took my son to last December will do 30 minutes phone conferences for $175. I tried to ask a simple questions about a reaction to a medication and the staff said that I would need to set up a conference call. Is this how most specialist in the area of PANS/PANDAS and Lyme treat patients. I have insurance and they will not pay on conference calls like this. I have a cardiologist that works with us weekly by email and calls my house at least once a month. This doctor is willing to collabotate with other doctors since this condition is affecting DS blood pressure and heart rate. I guess the other question, I need to ask is Will your specialist collaborate with your main doctor? Hope I am not confusing you. I live in Oklahoma and our insurance will allow us to go see other specialist but treatment with IV has to stay within our state. Rachel

Hi, Need some advice....freaking out abit. Had appt. yesterday with neurologist at NYU....told him everything about my DS 23. Been treating lyme for 4 years and babesia for the last 2 as well. All other coinfections negative. Basically my son is mentally disabled, doesn't speak except for 1 word answers but the answers don't coincide with the questions. Very confused, just sits in chair. He has taken MANY abx and herbals, nothings worked. Always declined. Current test come back negative from igenix for babesia and bartonella. Negative lyme (all bands non reactive) thru Quest. Doc from NYU said brain spec from 2010 was bad, memory areas showing no activity. He says my sons immune system is working over time....producing antibodies to the infections but doesn't think he really has these infections anymore so doing the IVIG will surpress and help calm down his overactive immune system. currently seeing LLMD and will of course see what he thinks about all this before we do anything, also going to see immunologist. So NYU doc wants to have another brain spec done, then put DS in hospital for 5 days where he'll get another EEG of brain and spinal tap done as well as do IVIG for 5 days. Then he'll come home and if all went well with the IVIG in hospital, then he'll schedule IVIG for once every 2 weeks at home anywhere from 3 months for up to a year. In reading old post I thought people only did 1 IVIG then not another one for many months later? I don't know what to do....can this set him back? As bad as he is we are very thankful he's as good as he is. Should we just continue as we are? Basically just trying one thing after another, praying something will work? Should we take this chance? Please, any and all opinions are welcomed. Terry

I apologize ahead of time for the long post. I have been a long time reader/researcher on this great forum, but this is my first post.It's so hard to be both the 3-ring circus leader and Sherlock Holmes at the same time, and I am feeling lost and worried- so I could use some of your guidance. I will try to give you brief history up to this point. I had a very long road to discovery of PANDAS/PANS with DS8. Though he was a healthy and happy baby, at around 18mos he would have repetitive strep- he also seemed to speak less or lose speech. The big culminating episode that is forever etched in my memory was when he was 21/2 and i got call from daycare he was stumbling! Took him straight to dr., walked like a drunken sailor, and sure enough, strep again. Flying the next day on vacation I asked for shot of antibiotics. From the moment we got on plane,and for two days after, he was "out of his head", screaming, inconsolable, irritable, but with little words. I was about to take him to Standford ER when he passed out. The next day he seemed better, but from that point fw I feel he was and continued to forever change. When trying to get tonsillectomy done, we didn't pass pre-certification at first, they couldn't figure out why his PT, PTTs and I think neutrophils were so off. Tested for leukemia, lymphoma, von wildebrands etc. I was worried that he'd have leukemia or hemophilia. Finally, they gave us the approval and said that sometimes repeated infections can cause Autonomic System Irregularities. Post surgery he was better for a time and then things started to fall apart. Preschool teacher said just fall off the chair sometimes, really out of it and spacey sometimes, know things one day, and then not the next. I took him to Neurologist, who tested for Fragile X and some other rare syndromes, also ordered EEG. All tests were normal. He continued to catch every virus and bug. Next couple years, he was extremely fatigued, falling asleep mid day, always sleeping so hard he'd wake up wet. He complained about his legs and arms hurting him occasionally. HIs eyes started to not track together and occasionally not focus on you. He started to walk on his toes. I took him to orthopedist. Still had trouble with cognitive processes, but progressing very slightly. Next year he started with eye blinking here and there and started to become "adhd" like. He became overly sensitive to even the slightest light, smells of things he used to eat all the time, now bothered him, and sounds too. I then noticed a hacking cough, but not all the time, and he would sweat up the bed like crazy. I thought maybe he had apnea or tonsils had come back? Did overnight sleep study that was all clear too. Though changes were physical in the first couple years, in the last few they have been more mental. For a while his smile seemed more like a growl. His once easy going, happy disposition became one that was irritable, easily upset, and extremely emotional. We had to watch on Tippee toes when he joined the little sports teams. He seemed to get really agitated when he exerted himself. I found his pupils to always seem dilated. He was going off a cliff and I could not figure what was going on! I ALWAYS thought that strep, stumbling, and out of head episode had something to do with everything. I looked and researched. Finally found PANDAS. I watched the next time he was really "off"-- the obsessing over batman, the personality change, the throwing his body around, nighttime wetting, and waking up with a sore throat…took him to dr…STREP! I don't even remember if I asked my regular pediatrician about pandas- but waited 5 months for Dr. B. He agreed with pandas- took blood, and put him on antibiotic and prednisone. DS did not do well on steroids…crazier behavior, extreme melt downs, crying then hysterical laughing. When we saw for followup- I told him how awfully he did with prednisone- reiterated his symptoms of low grade fever, night sweats, fatigue and hacking - and he said sounds like Lyme and Babesia. Ordered Igenix lyme test and he was IGG positive through Igenix, not CDC, and Lyme IGM negative by both standards. He was positive for Babesia, both IGM and FISH. Started with antibiotics and got an apt with DR J. I thought he would be put on IV antibiotics, given his sensory and nuero symptoms and likelihood of having this for while. We continued to see both Dr, with seeing Dr. J more and Dr. B not so often. DS definitely made gradual improvement a couple months after starting treatment. But I would say he is only to 50%. Dr. J says DS has immuno-encephalopathy, but not offering any treatment. Dr. B ran more tests (mostly strep based i think) to see if anything else was coming up. DS continued to have episodes, and trouble with psycho-social issues. Some days would seem better, but he would fluctuate so much. In September, just back to school for week or so, he was again in exacerbation. He was really off his head. I called my ped and asked to have Cunningham test asap. Numbers came back sky high for Dop1, Dop2, and Tubulin, with the other 2 in range. Results were at far end of PANDAS LIKELY. We actually had our DR. J visit that same week and I knew he was still a bit off..after treating lyme for whole year, and only having positive IGG results, it NOW said IGM positive both IGENIX and CDC! What does that mean? I did call the office, but they really didn't have much to say. We have another visit scheduled for the end of January. THEN in November, DS started had for the first time ever - physical tics, almost like spasms, almost a cough with his whole body jumping. This ramped up for day, double checked on his strep- he was negative, but I took his sister and she was positive. The tic slowly went away. Since then though he has had them again, really really hard blinking and a CONSTANT coughing, inhaling tic. He also had a couple nights where he was really sweating it out. He is having super anxiety separation, panic attacks, and intrusive thoughts that go haywire. We were out again in SF visiting family. We went to Alcatraz and he could not stop worrying that the boat would leave us on island, and then worrying that he was going to have surgery there, and crying, even as we waited to get back on ferry. No amount of reassurance would help. I went to neurologist in NYC who has pandas listed as interest- she agreed that it's likely auto-immune, but not really where to go with it, other than get a LP. She also drew blood. She called saying nothing came back in blood, even lyme tests were all clear, strep etc... SOOO…I feel at a loss. He is having symptoms he's never had before, the motor and verbal ticks, crazy separation anxiety and panic attacks. If the lyme came back IGM positive after a year of treatment ...what does that mean? Is it the lyme or pandas? I feel it's getting worse or there's something more going on that needs addressing. Dr. J was ok, but he didn't seem to guide in any other kinds of ways. Thanks to this forum, I had him tested for MTHFR- he is compound hetero, but yet I got no guidance as what to do for that from either doctor. I did do the 23 and me and he has5 homozygous mutations and 6 hetero. But again I really don't know what to do with all of it. Should he be on IV antibiotics if lyme is still the culprit? Should I go about trying to get IVIG? I don't know how to swing it if not covered by insurance. What else can I do? We see neurologist on Friday- I think I want to have LP done, but should I wait for exacerbation? Should I be looking for another doctor?

Hi, We just got our results back from Igenix, 1st igenix test we took. Came back negative for babesia, bartonella, Ehrlichiosis and Anaplasma. Doc forgot to check the box to check for lyme so ordering that now. My DS 23 was positive when this all started back in 2009 for lyme and RMSF through Quest, all bands positive. Then is 2012 tested positive for babesia, again thru Quest. We've been treating for both since, Always negative for bartonella and other co-infections. So does this mean he now longer has any of this? We've actually gotten rid of it? If so then why is he no better? The things that are better is his laughing and sleeping. Been giving Japanese Knotweed which I believe did it. He's currently on Alinia, Minocycline, Nystatin, Malarone and Cipro. Of course on multiple supps. including Neem and Core. Did a stool test and it came back very high in Lactoferrin...90.7....normal is <7.3. Doc rx'd the Cipro for this...only taking for 14 days. His Lactoferrin back in July 2012 was only 19.2....so it went way up in a year. See LLMD on the 19th to discuss all this and see what they think. Also have appt. with neurologist (Dr. Chong) in Jan. and making appt. with immunologist. Any thoughts? thanks Terry

Hi, Called Dr. B but they said they do not take my insurance and even if I come in they are not doing IVIG right now and if they did my ins. wouldn't pay for it. They said they will put me on a waiting list if I want, supposed to call back. Can someone please give me another immunologists or another doc that does IVIG. LLMD thinks IVIG would be good for my DS. Nothing else has worked. thanks His Mom

Just an FYI Wednesday October. 9, Kati Couric will have a show about lyme disease. Dr. H will be on it

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.

I posted this on the Members Introduction page, and Chemar suggested reposting it here... Interesting forum, as you specify Lyme and PANDAS. Per repeated blood work over the last decade I have both from childhood. I'm a 45 year old man, permanently disabled (so they say for 14 years), and have been on a hard-core course for Lyme for the last year. Things are looking up. First, PANDAS: (Pediatric?) Diagosed with PANDAS (along with TLD, chronic encephalitis unknown type, Asperger's, CFIDS, and many merely-descriptive diagnoses - over the course of a year at about age 30). Ask my psychiatrist, he'll tell you I have all of them. Ask another doctor, he'll say he only knows about Lyme. Ask another, I have hormone imbalances, and acknowlege auto-immune problems. Ask many other doctors, they'll say there's nothing wrong with me at all and to go see a psychiatrist - which of course is the first doctor that will tell you I have all of those conditions. Second, Lyme: First tested, and came out positive in 2010. It took until last fall to get a doctor to do anything about it. The "University Doctors" at the same university that did studies that show significant residual effects after Lyme, didn't acknowledge residual effects as being valid until confirmed by the CDC. Ironically that was only about a month after their researchers published findings on mice, a couple years ago. It was suggested elsewhere that I probably have "post-Lyme" and was actually infected when I was a child - which is extremely likely considering where I was living, which also has additional tick-borne infections, only other one I show is that I had (thus IgG not IgM) Ehrlichia Chaffeensis, tested a year apart. So, if I'm so messed up, how is it that I'm writing this (seems to me) lucid message? How was I an honors student in college? Symptomatically, I have a hard time expressing myself here. Severe anxiety and sleep issues, which only after more than a decade was I allowed to switch to diazepam. I had asthma all my life, which suddenly disappeared at the exact same time as a severely dibilitating bout which left me bedridden for months, only later learning that my thyroid blew out (called Hashimoto's) and my hormones (thyroid, androgenic, increased estrogen) went completely out of whack and a lump grew at my left elbow. All that cannot be coincidence, but no doctor seems willing to put them together. Epileptic response to light (flashing, certain patterns, sudden changes) that merely render me useless (called Temporal Lobe Dysrhythmia) for quite some time. Visual disturbances after originally having 20/20 sight. Glasses can reduce eyestrain (especially prescription dark sunglasses) but the adjustment they make is very slight, yet I need reading glasses to follow text on paper, especially high contrast paper (laser printed black text on high quality white paper is impossible to even look at, there have been times where I must read such a document so copy it to low quality (and lower contrast) paper or directly to my LCD computer screen, which I have adjusted to low brightness, with soft colors. High functioning Asperger's? Absolutely. Meet me on the street and I'll seem quite normal, or rude (If you try to get me to engage me because I won't), but polite and cordial conducting regular business. Meet me a second time, I will have no idea we met the first time unless there's context or you have something unusual about you (they call that face-blindness). Those few 'friends' I have are long time acquaintances that accept me as I am, know I'm 100% trustworthy, and am as helpful as I can be. Yet I will not necessarily recognize them either. Show me a famous face from the 1980's or earlier and I'll tell you immediately who they are - not that I understand that. Physically, I've had times where I was truly athletic, others where I've wasted away, and for longer than I can remember easily worn out. Energy comes in bursts, easily forget to eat, sometimes force myself to eat and it comes back up. Blood Work: (I can't possibly list all of the out-of-range results here) Anti-DNase B: at a lab where the reference was a titer of 85: 480 in year 2000 240 confirmed two months later 340 confirmed in 2001 554 at the beginning of this month, with reference of 301U/mL Anti-Glomular Basement Membrane (something about determining Chronic Glomularnephritis due to the above) 21.2 titer (barely positive) in 2002 retest by another lab in 2010 "Neg" with no further information (a few months after severe change) Lyme: (too complicated to elaborate here) 2/2010 - "neg" at one lab 5/2010 - Western Blot "Pos" IgM, with "neg" IgG (fine print says could be false positive with EBV - which I have), and positive for Borrelia Burgdorferi Plasmid (no other tests showed positive) 7/2011 - convervative lab: "Neg" near simultaneous tests at two labs: one shows Babesia Microti previous infection, other shows "neg" A doctor decided to treat my results and symptoms as a new infection of Lyme since last October (he's not allowed to treat "post-Lyme" or "chronic Lyme" because they don't exist per CDC, so I've been on a severe course of antibiotics, antimicrobials, anti-whatever for a full year at a cost of $10K so far [covered by insurance] and shockingly, my body is improving significantly. At first I thought this was due to the simultaneous treatment with Testosterone, as mine was marginally low, and I've verified his treatment all along with a highly renouned Urologist. Here's where it gets bizarre: after a few months, my testosterone has increased near 1200 (very high) so I keep lowering my dose slowly to less than half, and my level keeps staying up there. The Urologist says this is impossible. He says it is unprecedented. He concludes the only reasonable explanation is that some systemic disease is resolving. CFIDS (Chronic Fatigue Immune Deficiency Syndrome) HHV4 (commonly called Epstein Bar) tested strongly positive in 2001, 2009, 2010 HHV6 tested off the charts high for IgG in 2001, and 4x reference in 2010, but IgM neg when only test was done in 2001 Symptomatically: thoroughly and completely consistent with this Syndrome, which many will say is not actually a diagnosis, but a description of symptoms; grouping together similar patients. A couple bouts of Fibromyalgia in over a decade, but gladly not long lasting. Tested for just about everything possible, ruling out all the obvious, and ~2001 learned that old records get destroyed, so went back and acquired every result that still existed, and keep every new result, and have them summarized. This prevents retesting the same old things every five years, as happened all my life. After relatively successful time through my 20's, I "crashed" starting in 1998, was put on the first 'band-aid' psychotropics which made things worse, cold-turkey switched to another set (major error and they would know better) which made me bonkers, switched and added and messed with my brain for about a year, then found my present psychiatrist which halted all that, tried several more but conservatively, and finding that they all made things worse, continued with testing and treatment of symptoms and I slowly went through stronger benzodiazepines, ending up stable on diazepam - not to suggest that's any cure, but at least I take absolutely no other psychotropics and do better than when I was on them. Permanent brain damage likely due to the 'bad science' in early 1999. Applied for disability in summer 1999. Have been mostly housebound since, with periods of reasonably good mental and physical health. I realize this is entirely improbable - but it is factual. I'm continuing the Lyme treatment which I guess I'll list (though may be incomplete) which will continue, possibly for a couple more years. Suggestions on protocol changes are welcome, as future stages will include anti-parasytics, maybe anti-malarials, and who knows what else. Thing is: I don't know that Lyme is really what he's treating. It is my suspicion that some systemic infection(s) are being treated, even if they are not even being identified: 1 year on Zithromax, concurrent to the following, some switched, others overlapped depending on how they might interact or affect the liver: Mepron for four months Ceferoxime Axetil Clindamycin (I think I'm forgetting some) concurrent to (not for Lyme) Testosterone injections (now tapering off) anastazole (now tapering off) Armour thyroid (now tapering off) diazepam (went up due to effects of others, may taper off) I have basically seven times a day that I take medication per protocol - makes it hard to leave home. Is this typical? Is it even like anyone else? Is it quackery that I'm allowing myself to be subjected to? (I'm terrible at proof-reading, and don't doubt some words or sentences are a bit out of whack) Lyme Green Panda (with TLD and CFIDS, too)

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.

I just had my phone consult with Dr. J. Now I nothing bad to say about the man, he is very sweet and incredibly brilliant. I did feel that we did not get a straight answer from the first visit. I finally pestered the office and he called me back. He said he feels Ian is dealing with Lyme. He said to stay on the combo of Augmentin and Azythromiacin, and wants to add in a cysts buster (I forget the name). Now I have a few questions from those with more experience here because between Dr. J's speaker phone and the fact that he tends to mumble a little, I may not have heard everything. Ian had 3 rounds of Igenex testing, the first round was the whole 9 yards, 2.5 years ago. I posted the results here and was told it looked very Lyme-ie. I did not explore it at the time because it wasn't positive according to CDC standards, and we had not tried IVIG at the time. We made the decision to try IVIG as it was covered totally with our insurance. After 4 rounds of that and no results, we tested again, the western blot. He has less markers that time, but still some questionable results. Dr. B said lets try HG IVIG for 4 rounds since Ian had also gotten a vaccine before I realized he shouldn't. SO we did that, and still saw no improvement. One appointment Dr. B looked back at the initial Igenex tests and said, if he knew all he know then about Lyme, he would have called it a positive and highly encouraged me to call Dr. J. So I did. We saw him and did the WB again. Dr. J said he clearly was exposed to Lyme bacteria, but never did call with the test results. The third time he had less markers, but still one positive on a relevant lyme band. I had to call the office for the results. He said to stay on Dr. B's combo for the time being. I finally called back again because I didn't feel I had proper follow up from them, and they scheduled a phone consult for me. He called right back at the time appointed so I was very happy with that. He was very thorough and informative for the most part. He did say he feels it is Lyme, so lets add in the cyst buster. Now Ian has been on the combo of augmentin and azyth for 6 weeks. During this time (I should not have done two med changes at once, I am learning that) I also decided lets wean off prozac. Ian flared. Yeah, no kidding. lol So He has now been off prozac for 4 weeks. Last week he was NOT good. This week he is better, but he also has a nasty head cold. SO, here we go. Some of y questions. Is augmentin and azyth a good combo for Lyme? Maybe when I thought he was flaring, was it perhaps some die off or herxing? I attributed it to the prozac weaning and the OCD flaring up, but maybe not? This week he is a bit better, OCD is down a bit, but still there much worse than on Prozac. He was just SO bad this week I notice any little improvement. So at this point I don't want to put him back on the prozac because we are introducing a new med combo and I want to see what is going on with that first. Another question I have is if he tests almost positive the very first time (he was literally one + off, if I recall, what does it mean if with each of two more tests, he is less towards positive every time? I thought Dr. J said something the first appointment how they can stop making antibodies towards the Lyme long term if not treated? I did not ask this time, and so much info was tossed at me during the first visit, I admit I can't recall it all. But is that possible? I could dig out the tests and be more specific but I have to run to Lowes to get a piece to fix my kitchen sink (doing it myself since I am so poor from all this kid's dr.s visit, LOL). I think my last question or two, what is the best combo for lyme? and if it is working, how long does it take to see real improvement? Sometimes I think I should just move to CT. lol I am trying to keep a sense of humor, and it is easier this week since Ian isn't quite as volatile. Oh, one more. If he starts to herx, is there anything I can do to ease the symptoms since Dr. J did not really address detox..... Thanks so much for humoring me. I am hoping FINALLY we are on the right path! Lisa

After three months of IV claforan, DS's PICC line is being taken out tomorrow. As scared as I was to put that thing in, I'm thrilled and scared to take it out! He is physically doing so much better; he is working out to the extent that he can with a PICC line. He has lost maybe five pounds and looks much more fit. I'm scared because of the thought of a relapse, but he will still be on orals for maybe six more months. Plus, the wonderful Dr. J and his staff are still in our corner and I feel we are supported in his treatment. I was thinking of some of the interventions that have been done to and for our son and the list is long... 1) Lazy-eye surgery (big difference, not 100%, but probably 95% better) 2) Podiatrist consult, orthotics for shoes (made a huge difference) along with tendon loosening exercises 3) Three months of IV abx 4) One steroid burst 5) Two steroid tapers (awesome) 6) Six months of Bicillin shots in his rump (horrible) 7) Two plus years of oral medications (never would have been enough) 8) Allergy shots 9) Four HD IVIg (very helpful) 10) GFCF diet, not helpful, but also not restarted after Lyme diagnosis. He would never have complied, so we just tried to eat as naturally and healthfully as possible. With all that being said, we are not at 100% yet. He still talks to himself while he is on the computer and he still wants to spend too much time on the computer or game; but part of that may be learned behavior. He still needs to rebuild his stamina. I still feel that there is some autoimmune component going on, but until I can talk to Dr. J. and Dr. B, that is just my suspicion. We still have some more bloodwork to run. For the next few weeks, we are going to enjoy what is left of the summer with swimming, bowling, amusement parks, and whatever else comes to mind.

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!

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

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?

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! ;-)

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!

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?

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