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Hi, Great News...it just so happens I have an appt. in Jan. for my DS with Dr. C....now I'm really excited.

hi, I too am on the "list". Is there another doc to see, instead of Dr. B?

Hi, thank you...FYI: he has been taking nystatin for years I think your right, I'm going to wait on the test and discuss on next appt.

Hi, Been reading posts about mold and someone mentioned even if the test comes back normal you may still have mold. We had our house tested and everything came back fine. Can my DS23 still have mold? Our LLMD gave us a test to do: Total Mycotoxin Panel from Realtime Labs. its expensive and I'm not sure if insurance will cover it. Does anyone know if this test is worth it? or has done it? thanks

Hi, My DS tested positive for Candida glabrata...doc said difflucan doesn't hit that very well (did 30 days of it). According to test, GSE, Berberine, Uva Ursi and Plant Tannins hit it...haven't used any of these so can't tell you how it went. Doc also prescribed Bactrim DS, said it hits it very well. Haven't started it yet. Waiting to do bloodwork in 3 wks first. Also said to use Intestinal Support drink, 1 scoop 2x day...ramp up slow starting with 1/4 scoop for gut. good luck

They said having a hard time getting it covered by insurance.

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

Hi, My DS (23) has been on it for a year, 4.5 mg., haven't seen any improvements. Sorry. But I have heard where people find it helpful, just not us.

LLM - was your son also taking other supplements when you started Core? namely zinc already? How did you know what the correct dose was? Did your LLMD suggest Core? At what dosage to start? Sorry for all the questions. Just went to an ART doc who said my son tested positive for KPU but didn't put us on anything for it. He only suggested a detox protocol. Thinking of trying this for my DS. Rowingmom - You stated you always used Japanese Knotweed, do you think this helped? I recently started my DS on it as well....up to 2 pills 3x a day, we use the pills from Green Dragon Botanicals. Would you mind telling me which brand you use? pills or powder? how much? thank you His Mom

Hi, Dr. Horowitz, an LLMD NY doc will be on the show Oct. 9. http://katiecouric.com/2013/10/09/daniel-radcliffe-lyme-disease/

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

Hi, I am actually going to buy this also: (Enzymedica, ViraStop, Immune Function) along with Enzymedica Candidase...I believe my DS has a yeast infection, possibly for a couple of years even though the LLMD doesn't think so only because no white on tongue. The reviews look promising, so I too, would like to know if anyone has ever used this. Sorry, didn't mean to hijack thread thanks

thank you....yes, i'm going to switch probiotics and see if that makes a difference....I will buy both and see how it goes.

Hi, I'm now convinced my DS (23) constant loud laughing is caused by yeast and want to do everything possible to get rid of it but being on abx its nearly impossible. I've been researching and have found other Mom's talking about this with their kids, albeit, much younger, on different forums: one being an autism site. I read on this site not to give any probiotic containing Streptococcus? I have been giving my DS (23) VSL#3, 2 packets daily (900 total) that does contains this and his strep titers are very high even though no symptoms so I've been looking for something else that doesn't contain Streptococcus, yes? Also read about a product called Enzymedica Candidase that is supposed to help with the die off symptoms, anyone know about this? Did test positive in 2012 for Candida but it was IGg. Asked doc but he's just not sure so we are not really addressing it. Again, DS doesn't talk so can't ask how he's feeling. No white on tongue and not really sure what to look for in BM's. Doc did give 10 days of Difflucan and no change in DS so they figure no yeast. But I read that 10 days might not be long enough if bad case of yeast....was going to ask for 30 days and then see if any change, any thoughts? Also any suggestions are extremely welcomed. thanks His mom

Hi RowingMom, thanks...yes, the pulsing does seem to work better, maybe we'll go down to 4 on/3 off and see if that is even better. I had already bought the Green Botanicals Japanese Knotweed in capsules...I believe the dosage is 3 pills/3x day...is that enough you think? Those are for inflammation, yes? Read it was really good for the brain.

Hi, He was on IV rocephin back in 2010 but his WBC was too low so had to go off. Then a year later was put on IV Doxy for 9 months but other than that all orals. I gave him 3 advils a couple of hours ago and I can't believe it...he's quiet, no laughing. I'll give it to him tomorrow 3 - 3x day and see how he is. I do have Japanese Knotweed that I 've been wanting to try so I'm going to add it to his protocol and see what happens. Just came back from appt. with LLMD and will keep on current abx: malarone/art for Babesia (numbers coming down nicely - finally). But he also started 3 weeks ago on rifampin/mino/ pulse tindamax for possible bart, will keep on this for a couple of more weeks but then they want us to stop that put on parasite protocol for 7 days to see if any change. The reason: i've been stopping the rifampin/mino/pulse tindamax on weekends to give DS a break and he actually seems alittle better, more with it, doing more on own so LLMD thinks maybe tindamax hitting parasites. Once we start back up on Mondays he's back to self. Keeping my fingers crossed that this might be it, will help. Does anyone know if 7 days is long enough to see a change? I'll let you all know how it goes. thanks for all the help His Mom oh...yes..was tested for toxo and others, negative

Hi, D'sMom: thanks...I did give him 2 once and it did nothing, I'm going to try that dose and see if it helps for a couple of days.

Hi, DeDee: I did buy the book, haven't read it yet though, will start....did any of the herbals help? If so, which ones? thanks CobbieMommy: I thought you can't give steroids if you have lyme and coinfections? D'sMom: ibuprofen. Dr. T Rx'd 3 doses of 750 mg a day....that's 3 Advils 3x day, yes? Instructions say no more then 6 a day. Does he have lyme or coinfections? thank you all for your help His Mom

Hi, thanks.....funny you mention itching...my DS always itches his nose, constantly. We were thinking possible yeast but he just finished a 10 day difflucan a couple of weeks ago "just in case" he has yeast. Not sure if he does, can't ask him anything. I'll try the ibuprofen (Advil, yes). See how he does., thanks. Have your tried seroquel? I give my DS 75-100 mg. on bad days. Does seem to help some.

Hi, thank you for the suggestion. Just to clarify...my DS is no longer angry, stopped that within 6 months...quite the opposite...he is very calm, nice, polite - easy to be with. Doesn't do any of the OCD or angry stuff anymore, which is why not sure if its PANDAS or just the lyme/babesia/bart/myco stuff. Can laughing be a tic? Was just wondering if there was something I could give him for the laughing. thank you

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

Hi My DS (23) didn't sleep for a few nights, I think because started new ABX...Rifampin/Minocycline/Tindamax...what have you tried to give her? I finally gave my son a couple of things and it worked...slept last 3 nights...also decided to stop the ABX, just gave the others he was on (malarone/arteminisia) and stop all supps just for the weekend to give him a break and he now slept last 3 nights. Going to start back up everything on Monday.

whoops, sorry, didn't answer your question. A few months ago I had strep so I had him tested just to be safe, again he can't/doesn't tell us when anything is wrong. We never know if something is hurting him or not. He did not have symptoms but I told my doc to swab him just in case. The swab came back negative but his ASO titers were very high so she put him on Augmentin XR (?) for 30 days, didn't help. That's when I searched for Strep/Lyme and found the PANDAS forum.

Hi, thank you and yes, he was normal until 3 1/2 years ago (Dec. 09) when this whole nightmare started. Started acting strange literally overnight (first didn't sleep for 3 days and then wouldn't get out of bed for 3 days and actually wet the bed...we were completely stunned, he was 19 at that time)...brought to regular doc who first said he's depressed and gave Paxil (we knew that we BS but figured give it a try for a bit), after a couple of weeks we brought him back and said to test for everything and blood work came back positive for lyme, all bands positive and rocky mountain spotted fever. Doc gave usual 30 days doxy...kept declining in symptoms, forgetfulness, memory...doc added amoxicillin and another 30 days doxy after begging...still declining. Brought to LLMD, had additional test, confections (babesia/bartonella) negative. Clamydia Pne. positive. Stayed with that LLMD for 6 months, DS still declining. Was extremely aggitated, mad, hitting walls, slamming doors. Now looking back would have stayed with that LLMD but at the time we didn't know what we were dealing with. Didn't know lyme could get like this. Switched LLMD's (stayed with this one for 1 1/2 years) during that time started with OCD (washing hands/going into bathroom and sitting for long periods of time without going) got so bad we had to shut water off in house. Also had the need to confess things that happened over a year ago...actually called the police to confess an minor car accident he had the previous year when he was normal. Didn't know about PANDAS then and LLMD never mentioned it. These behaviors "went away" gradually. Again declining, not speaking, laughing on/off daily uncontrollably, completely lost. Then switched to another LLMD but for only a few months before we could get into the LLMD we currently have. Also had metals tested and that's when blood test for Babesia came back positive. Started treating that, by this time DS kind of leveled off like he is now. Doesn't/can't answer questions, his main symptom is the laughing which is very bad, lost, no reaction to anything good or bad, just sits or walks around house laughing. Actually didn't sleep one wink last night because of it. He's mentally disabled now, cannot be left alone-goes to adult daycare, just does what we say or ask...needs guidance with everything. Sleeping is a crap shoot. Now starting to treat Bartonella (suspected) with Rifampin/Minocycline and pulse Tindamax...still on Malarone/Art. He's been on multiple meds (too many to list), Doxy IV for 9 months, takes tons of supps, probiotoics. Actually starting IV chelation this week because lead came back 34 (normal is 2). Is there another way to rid of lead besides IV? Basically at our wits end....never any better except some random days, he might have a good one...by that I mean no laughing, might actually answer a question correctly. Been seeing same psych doc (Dr. Bransfield) since this whole thing started. Nothing he prescribes works/helps. Is on Seroquel randomly, it does sometimes calm him from laughing. Sorry so long...Just found this PANDAS forum a few months ago and after reading many posts (old and new) PANDAS symptoms seem to fit....lyme is a lot of physical pain and my son never had any, still doesn't, physically he seems fine....its all mental. Brought up PANDAS at my last appt. with LLMD and they agree, could be PANDAS as well. Was going to go to Dr. T but from what I gather, same meds treat both (lyme/babesia/PANDAS) so I canceled appt. Money is getting very tight, trying to spend it only where needed. I have learned more from this forum then from anywhere else. Any insight or help is always greatly appreciated. His Mom

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?