HopeinHIM

Started with Malarone for just 2 days then removed bc so sick to stomach then moved to low dose of Artimisinine 3 more days. BUT he had active strep at the time we began this bc blood work came back telling us so. I think we should have waited to change up his anti b's a bit get rid of strep and then when healthy again maybe start Babs treatment. Dr B just ordered the yellow liquid med (?) for Babs treatment but I am going to wait until he calms down here. Dr B also withdrew Omnicef thinking that might be making his legs so weak. He can not seem to handle any BABS treatment. He get's mentally unstable immediately . 2 days not walking but this afternoon he is again. This disease very well may put me in a institution. If he looses ability to walk again I will take him to the hospital and have him looked at.

Our Ds 10 w Lymes/Babasia/Bart last evening lost ability to walk. A day after starting Babs treatment he complained of sore legs. Not uncommon bc his legs hurt often. But now when he takes a few steps he falls. We had to take him from the couch to the bathroom throughout day. He is scared and so are we. Trying to act like it's just another part of the healing Meds for 5 months. On the decline for the past month. Every time we tried to treat Babasia he herxes (Neuro like Bipolar ). The crazy neuro symptoms have calmed a bit today but now he can't walk. Doc says he wants to see him but it's NEXT WEEK!! What constitutes an emergency in the Lyme world? Have any of you had this with your children? Does it stop and go away??

Hi I am still searching desperately for alternate "successful Bart/ Babs/ Pans treatment for my son. He is not thriving on the four anti b and many supplements. I have two of the best Docs and they are great and doing their best. The meds make him throw up almost daily. His stomach is a wreck. He looks like c#&%p and while the first few months there was great changes he took a turn and has been sliding fast for well over a month now. The nuero stuff is unbearable to watch and the physical symptoms are making him lose hope WE just think maybe???? he will do better the all natural route. Julie is supposed to be very knowledgeable but I will need some moral support along the way with this because its very foreign to us. I have been reading for the past 6 months on Lyme's and co infections and have concluded that not one thing works for everyone. We have been using natural AND meds so far with little success! I want an herbalist with a heart that can help walk us along in the healing. Share if you can! Please know that I am not judging anybody else's form of treatment choice here. Just trying to find out what's best for this child. Thank you!

rowingmom, I am very close to going all herbs or something other than anti. Our DS10 has been on the decline for the entire month of Oct. He was doing Ok (slowly improving) and then just fell ill. Low grade fever in morning and evening and most days stays in bed or home bc he is tired and weak. Active Strep showed up on last weeks lab work so Dr B changed his augmenton to Omnicef. Ok a day or two and now back in bed. Watched tv or plays video games and says he feels horrible. Last month he had soccer and tutor a few days with karate. NO way this entire month decline. Now the strep shows up and he is on zith/aug/bact. Ok maybe growing immune to one of those so strep got thru but I am on Omnicef now for 5 days and he started this morning feeling worse again. I am crying and falling apart . I tried Malrone as I mentioned above for two days but such sick stomach so switched to artimisine for two days. He just seems to be on the decline and even looks sick now. I am so worried, Dr B and Dr Tom way too far to be supportive. Today I had to practically carry him to bathroom bc he is so dizzy. He might spark up a bit here and there and even go out a bit but not well. I put an email out to Judy G for herb help and no response yet. That was last week. Nightmare!

Our DS 10 has been suffering for several months now with flare after flare. I have received so much helpful responses along the way but this one is different. Caretakers (mostly moms I assume) know what I am talking about when I speak of the odd mental/neurological behaviors that follow the Lyme's/Bart /Babs children. There r weeks that just getting dressed and teeth brushed with supplements and meds down has been considered a success. He is good for a few weeks and going to his tutor and then weeks where he can hardly sit for a 5 minute lesson. There are times he plays hours of video games with perfect clarity and then in the evenings he falls apart before bedtime with "i am sad" and baby talk. Please! My partner has such a difficult time not seeing that this is typical behavior. He believes that the child is manipulating because he plays with his friends for a while but stays in bed complaining from pain or whatever really. Our DS can be ok for a few hours and then very fragile the next minute. I spend so much time defending our sick child that I feel it drain's me more than the Illness itself. Our child is bright and other than being a strong willed boy he was always a good boy. My husband is a mess because many of the household rules are not working because our son is not well and not always able to follow them. (cleaning up after himself and not going to bed before midnight)My husband feels that if he can play complex video games then he should be able to go to school at least half days. Heck I am happy if he brushes his teeth. He doesn't get it I!!!!!t. He also doesn't want him in our room every night because he want his bed back but our DS is frightened to sleep alone. He is a loving father but this is such out of the ordinary behavior so it's a huge stretch for him. I try and explain that this is temporary and the child (these children need love and great compassion not critism) Share please if you see similar dynamics as well in your home or set me straight and tell me I am enabling!!! Does this disease wreak havoc on families or what?? My husband and I are constantly at odds . Thank you all and God bless. I hope to share some of your stories with my husband!!

Hi, DS being treated for Bart and in treatment for four months. He is Still on again off again every two weeks and cognitive has not returned. We visited Dr B this week and he feels it might also be Babesia. Lab showed nothing but symptoms all the way around. Months ago, we tried artimisinine for a few weeks and as we slowly titrated up he had the most horrific emotional herxing that lasted for ten days. He did seem clearer on the low dose I must say. Now dr B wants him on Malarone but our naturopath says we can instead go with artimisinine alone or even a combo. He says they work the same!!! Is this true??How do children handle these and is one better for children than the other for treating Babesia???. Is one stronger? I know one is more natural but they both seem to have some pretty tuff side effects. Just don't know which one to choose for him. Both our Docs say either but not sure! Thanks again to all!

Ds 10 diagnosed 5 months ago with PANS/ bart. Major nuero symptoms. He herxes every two weeks and in between we are OK. Last herx was a major whopper and we were advised to stop all meds for 7 days and increase detoxers. We did. About two weeks after reintroducing meds again he started fevering and started up with Pans stuff along with Lymey. Headaches, belly ache and emotionally a mess. Had blood drawn last week and had our long awaited apt with dr B. Dr B thinks maybe Babasia so we are starting that med as well but on my way out the door I asked to see recent bloodwork and it showed "active" strep (795). The nurse confirmed that to be true and so the entire family returned to the office for bloodwork to see if we are carriers. My question??? how did he get strep if he has been on anti B's for months (zithro/ Aug/Bact) Yes a few times stop for herxing but right back on. And then wouldn't meds have treated the strep once on. Dr B had an emergency so had to leave and we didn't get a chance to address. Also.....Dr B didn't look at blood work while we were there. Thank you all!!

I am so sorry for the pain! We all can relate. We sold our home and now live in a rental because I am now homeschooling and we are spending big $ on out of pocket docs. You will find that most (not all ) PANS doc do not participate in insurance. Once they start really researching your child and find the actual infection or infections that are causing his issues then different docs may need to be seen. In our case we moved from a PANS friendly neurologist (out of network) to a Lymes specialist and naturopath. Both Out of network! Expect to pay. The supplement's that many of us are on are expensive but all of this is necessary of you expect the child to heal. Many of us see a few specialists at a time because no one doctor knows it all. It's a complicated puzzle to solve. Most of the blood work (not all) however IS covered so that's good news!!!

Hi SSS We had a CBC in august. Left many messages with doc team and no return call yet. They are so busy!! I have been requesting blood work for several weeks. I guess August is not that long ago so they are not concerned? I am just assuming will all this "stuff" I am pouring down his little throat eventually some bodies say "stop"!! I know much is helpful but it still has to be processed and I can only intuitively assume that he could possibly be overloaded. Heck....I guess I just don't know. Going next Tues to Doc B so I m sure He will do blood work. I did restart anti b cocktail today out of desperation. He was off for a week and Doc Tom said wait a bit and restart so I chose today after stopping 6 DAYS. Still nuero symptoms, head feels funny seeing things, feels like he cant talk at times, smell and taste distorted and loses time thru outt day and so on. I am concerned. Might request an MRI.

There are day we don't leave the house. Shower and teeth brush are big success days for us. Then there are times that he is relatively sticking to a routine . But No school!!! I can not believe that so many children make it to school. Even our best days could not pull that off. My Ds plays video games plays with friends a bit and goes to Karate when not too tired and for school we watch educational videos as well with oral testing after. Last year he was an advanced straight A student at a private school. We last a few weeks with a schedule and then he starts to fall apart again. Picks up bad behavior and habits and it all begins again!!! We cant seem to get too long of a run without falling off the cliff. Lymes/Bart treatment!

Thanks to both of you! Well Dr T (NJ) diagnosed PANS back in May 2014. He was not sure what exactly from blood work but treated for two months coxsocci (Valtrex). He had high tiders there as well as strep. Had him on Amox. He was 60% improvement. Dr B said Bart(igenx inconclusive) when we took him But the anti B cocktail he chose was like stopping of the floodgates. He has so many Bart symptoms!!! From then on I was treating just the Bart until a few weeks ago the crash followed by low fever and all mental deregulations return except (THANK GOd) the raging. I am going to try a lymphatic drainage massage therapist but even slightly fearful there bc of his seemingly inability to handle toxins. YES this is all finding a needle in a hay stack. Poor kid in bed and watching days of TV. UUHHGG

Thanks for the prompt response. This is my theory as well. My fear (I have many) is that I restart anti b and he becomes more toxic. We are very mentally fragile at this point. Can I get the name of your amazing Pandas specialist? I read you said great person as well as doc and that is so important.

Hi All, My Ds (10 yr old) has been on anti biotics for Bartinella/PANS for 4 months under Dr B. We saw great improvement for three months. Over one month ago we tried a few weeks of artimisinine and increased glutithione. Had major herx so we stopped all and slowly worked up to Anti B again.(removed her b and introduced slow gental detoxer from Beyond Balance) He has not returned to baseline and actually his cognitive skills and memory are progressivley getting worse. He can't remember words many time or get's word confusion often.I am very concerned that he is getting worse from the spiroketes but confused becasue it was really making positive changes in other areas. He is also claiming he feel "high" often and emotionally fragile again as he was many month prior to anti B's. WHY???? We are still giving him glutithione/chlorella and 2x a day motrin. Could this still be the fall of the toxins from the biofilm buster a month ago?? of is he declining from progressive bartinella even though we have been on anti B's. ?? OR PERHAPS the LS glutithione is not good for him? Thanks you all of you!!

Now what? DS 10 has PANS and Bartinella. We were first treating the Pans only with Dr T and then went to Dr B and he believed it was more Bartinella. He is on Bactrim/amox/zith for 4 months. We did many test and found some Methyl issues we are giving him many supplements as per our DO naturopath Dr Tom Moorescroft. When we finally started the bartinella protocol he stopped raging and became functioning again. Dr Tom added artimisinine for Biofilms and he became even better on those in low dosages. WOW we thought this is it!!!! He can maybe go back to school and function normally again. (Our son has been home with very little schooling since last march) Eyes hurt/ head hurts/ reading and math affected. So really how much can you get done with these children??? BUT in September as I upped the herb he went toxic on me or he herxed really bad. We have been attempting to get him back to base line ever since. Past few weeks he seemed mentally getting less fragile but cognitive skills and memory seemed to be declining actually!!!! Dr Tom pulled all meds and Upped Glutathione and Tox ease (Beyond Balance). Reintroduced anti b's slowly and he was OK but nowhere near where he was when we in July. Then became sad and very fragile again sooooo Dr Tom again removed all meds and started Motrin 3x aday 600mg. That seems to help but he has also had mild fever for the past 8 days even on this high dosages Ibiprobin.. Perhaps all of this is PANS flare???? Overall he says he feels terrible inside and nervous and angry and sad. Looks like he could start raging anytime soon. Just giving him ibiporbin with probiotics and lots of lemon water. Says his head hurts and feels like he is going to blow up. Head ach with all that Motrin I don't get it.??? Trouble times are mornings and nites but during the day he watches TV and can play with a friend as well. NOOOO school!! 4 months of faithful protocol and $$$$$ and sliding back fast!! Today looking for lymphatic massage therapist to work on him for a few months. I am In NJ and yet to find someone. Dr Tom starting new product by Beyond Balance called MC-BFMP. Says it works wonders. I don't know anymore! Thank you all for your amazing knowledge and concern on this site. It is a blessing to many of us!

Hi, I am looking for info on the "Desert Biologicals Homeopathy treatment for Lyme's". Peter Allen talks about it very highly on his blog. I have read that it is powerful and needs to be utilized with professionals. However, I found on line where u can order direct. I have a 10 yr old and I can't stand these anti biotics in his little system much longer. I have read amazing things on this product . Some people are praising and a few negative as well. Thank you for any info you might have. This is the most informative Forum out there and it has been a true of blessing in this wretched storm Lyme's !!

Hi, My DS is 10 and first diagnosed with PANDAS but dr B now treating for Bartonella. He reacted immediately to meds. It was a miracle. Now we started to also go to an ND bc I would like to have some help w detox and cyst busters. Too much out there for me to tackle alone. Dr Tom Moorescroft put child on Artimisinine. As I increase slowly I started seeing Lymey symptoms come back. I don't know if its just the anti B's or the herb but its stinks. Today home and crying. Sooo tired and emotional. If you asked me last week I would say I felt we were almost free from this horrible infection. Aside from his cognitive skills way lagging, all other symptoms left for several weeks!! Is this what to expect? Should we slow down on all stuff for a few days and then move forward. Doc say try and push thru or go with your gut. My gut is in knots!!

Hi, I was so happy to read your update. My son is in 5th grade and nuero Bartonella. On azith/amox /Bactrim. 2months. Since we started we saw dramatic improvement. Very similar symptom's as your daughter. Once we began Artisiminine a month ago he was completely back to self!! (except cognitively) We started homeschooling and had a great first week. Felt like we were moving in great direction. I am supposed to increase this herb up to four a day as the weeks go by. I am at three a day and bam.. He cant get out of bed and crying with over the edge fatigue. I am not sure it's even that. I move so slowly on any increase. I usually take dbl time to increase anything with him. We are seeing dr Bouboulus and Dr tom Moorecroft in Connecticut. One is ND other Immunologist. My question....Is this herxing and should I stop all meds and supplement for a few days? Doctor B says go with your instinct. Push thru if you can. I am not sure!! I plan on a few more months on anti B and then going to herbalist as well.

Hi, Sorry for any confusion. Still waiting on Igenx ordered by Dr B. I was surprised that in all the blood work I had from Dr T previosly (who I love also) Lyme's all came back neg. Why does he NOT use Igenx also if it's the only accurate one out there? Anyway....Dr B started us on the trio Lymes protocol before Igenx results are even back. I will get copies of all. Great advice! Thanks again!

Thanks so much for taking the time to answer me!! Soooo its NOT just one month of three anti biotics? He get's so emotional on anti biotics after awhile I am not looking forward to years of this. When people say they are in treatment they mean anti b or something else? I was so encourages to here about your son. What about homeopathic? No real good LLMD here in NJ that I have heard of yet without controversy. I will store this story in my mind for future encouragement. Something tells me I am going to need it.

Thanks so much! Testosterone??? First I heard but definitely will check bc my Ds is so hyper sexual suddenly we are beside ourselves. I am just concerned about his gut and all these anti B's. much thanks!'

Our Son (10) diagnosed with PANDAS/PANS thru lab work and symptoms by Dr T in NJ. Three months on anti b's and 50% better. WE went off to see Dr Bouboulis in Connecticut and he says Ds has Lyme's and is primary from what he feels. We Did Igenx test and waiting on results but starting three different anti B for Lyme's. No Lyme's came up on any of Dr T last 3 lab work tests!!!. I am confused!! I have been submerged in the PANDAS world for three months and hopeful that he would cure.... but now Lyme's??? and Dr B seems to think he has had it for awhile. Dr B was positive and seems to feel all personality , mental fog and such will clear with this Lyme's cocktail as he referred to it. Dr B says he may have strep too but it's the Lyme's that is causing most problems. Didn't really examine him just asked us questions. Oh no! does this mean permanent damage!?? He has been improving on Dr T protocol but not more than 50 to 60% plus low low low( 1.2 ML liquid) dose of Lithium have been added bc the only thing to stop the rages. He had tick bite four years ago. He fit a lot of the PANDAS symptoms. But Dr B says his feet ach and calves and brain fog with rages and mood swings lead him in this direction. I know I AM RAMBLING. SO PATHETIC! sorry. Thank you all for such great support and info and pardon my anxiety!

I am sorry and feel it too. Every time you talk to the docs their bills are sent in the mail that very moment. Our docs are Good and caring but overwhelmed and expensive. I am not a scientist like so many of the parents seem to be. I don't trust myself either in that arena. I journal al his symptoms and keep myself educated and on sites daily !!! the rest I must leave up to God! It seems like time must pass for the healing and that is the biggest trial of all. Waiting!!

Dr T ordered the Courtagen on both my boys. I didn't see it being that useful and it was $450 for him to read them for me over the phone. I assume it helped the Dr. cancel out any theories he had or conclude some new! The TEST showed in Both boys " Pandas profiles" w the youngest very susceptible to nuero disorders. This is what we are seeing too. Older son had OCD and Tics w Pandas but NO behavior issues the youngest (Courtagen showed Nuero sensitivities) is the one who rages and as behavioral issues with his PANS. I guess helpful. Does the 23andMe offer something new and is it $100 with the results (also who reads them for you)?

Yes, we did the Christmas list as well. That caused more anxiety bc it was too far away and he couldn't handle that .His Obsessions become so out of control that he can rage for hours over a pair of Labron James sneakers. He can pick up the next day where he left off. After several days of it, we buy the darn sneakers bc he is a mess and we are as well. I realize that is not the way to handle it but we need to function and it buys us a few days of peace. No ssri's work they only make him worse. He never raged before until we tried Prozac. Now its his new normal (3 times a week). This has subsided a bit on the suprax abx but not completely. We tried Abilify and it just added agitation! I have him on some relaxing herbs and they seem to help between rages. In between, he is a friendly boy and loves to be around people and laugh. But......say "NO"and he will frantically follow me around the house screaming for his object of OCD. OR write lists and lists of the object almost psychotic. This scares me more than any debt I go into over buying!! When he is calm , he will say he hates OCD and Pandas bc its going to make mom and dad broke!! So it's rages and OCD symptoms that are the most troubling with PANDAS. He shows no lymes . Coxsocci HHV6 and Pnummo cocci. Plus low IgG and IgA. You are all a great help. God Bless! I hang on to the LORD every moment bc I have nowhere else to go!!! Seeing Dr B July 8 and shooting for IvIg. His office is crazy busy now bc he has no partner. I can hardly ask his staff a question so I hope he is worth the trip!!