Tamistwins

Thank you so much for reaching out and sharing your story. I don't believe your daughter will or can be jinxed by stating she is doing better. I'm happy she finally got a better place. WHen my son began banging his head against hard objects I thought I would die. It was so heartbreaking to watch. Well that stopped after he went on antibiotic to treat a current strep infection, that's how bad strep is. It takes a normal healthy child and makes them do uncontrolable things that they wouldn't normally do. Well that improved and I should be insanely pleased but then we have all this other ###### surrounding our life that I forgot how bad some of the other things really were that have improved with meds and or IVIG. I am not familiar with ART. Where do you live? Can you tell me which LLMD you saw after Dr. J, is this your current LLMD?I wish your daughter only continued healing and don't ever be afraid to say she is doing well and to share your journey. It is encouraging for all of us who do not see the light at the end of the tunnel.

I am so sorry for what you are going through your son sounds just like mine. It is heartbreaking that they can't allow themselves or anyone else to be happy. My son is clinically being treated for bartonella also has clear cut pandas symptoms. I don't know what's the best treatment plan but I just wanted to let you know that after numerous antibiotics and ivig I stil did not see improvement behaviorally. I wonder if pex will help. All the best, Tami

I am so sorry for what you are going through your son sounds just like mine. It is heartbreaking that they can't allow themselves or anyone else to be happy. My son is clinically being treated for bartonella also has clear cut pandas symptoms. I don't know what's the best treatment plan but I just wanted to let you know that after numerous antibiotics and ivig I stil did not see improvement behaviorally. I wonder if pex will help. All the best, Tami

Hi, I completely understood your previous post I know your point wasn't to tell me how well your daughter's are doing yet I am truly happy that they are doing better I do question my path all the time because I have not seen a positive lyme/bartonella on my sons labs. Yet I do understand how it hides and it is a clinical diagnosis. I know my son used to be such a sweet empathetic loving child. I know I didn't raise him to be this nasty and uncaring and unkind. So it is so hurtful for me, I am embarassed to go places with my kids I feel like a total failure of a parent. Like one of those parents who never disciplined their kids, never taught them right from wrong, never wanted to be a parent. I put my heart and every moment into them (twins) I was so happy when I had them and they were so adorable and sweet. It is crazy how they are nothing like I thought they would have been. I know it's not them so where do I turn Pandas and lyme treatment is pretty much the same only lyme is multi antibiotics. what antibiotics were your daughters on some may be resistant to strep. What doctors do you see? I do live in NJ you can pm me your info if you like. Thanks, Tami

I'm thinking she's better off without it. I'll let you know in a few days if it's just coincidence. Biaxin really helped my son fight off his mycoplasma infection I can't say that it helped with behavior. We are treating bartonella with cipro and rifampin after azith and rifampin didn't seem to do much. Cipro has completely gotten rid of my daughters tics. Behavior still sucks:(

Oh I love your optimism, I am such a pessimist and I hate how I feel so weak and crumbling to pieces. I am so sad at how sick they are and I know they have no contol but then I get slapped in my face and a knife in my stomach knowing how disrespectful and unappreciative of me they are. Then I go back to being angry at myself cause I know it is the sickness. But please tell me how does he keep it together at school or camp why can't he talk to me in a pleasant manner too (just rhetorical question) lol boo hoo. For us it was definately strep first before the age of 2 all three kids got strep and then again and again and it kept going on...low strep titers. All classic symptoms of PANDAS: seperation anxiety, urinary frequency, bed wetting, rages, sensitivity to touch, hot, cold, tags, seams oh the list goes on. I never suspected lyme I only looked into it because IVIG didn't help. antibiotics helped to an extent but never with behavior. It helped with certain tics or compulsions. But then other things replaced them but was still better. SO my daughter was positive for lyme exposure she was the better of the two behaviorally. Today it's another story, she's impossible. My son never tested positive for lyme or tic borne illness but yet he is being treated clinically for bartonella. My youngest got put on antibiotics at 15 months when I started seeing similar behaviors, seperation anxiety and demanding I do things certain way. It is heartbreaking, They all tested positve on cunningham tests. I just don't know what to do anymore I feel helpless. If I go back to read some of my earlier posts I see at times there was a big improvement because we were in such a dark place at times. We have come back to those dark times, so now I wait for some improvement but when will this all end already! Thank you for your encouraging words I will cry some more and then be strong..thank you and I hope your child continues to do well!

Thank you for sharing your story with me. I'm glad your daughters seem to be doing better. I am always thinking that it's PEX that we need to do too. I am glad that your daughters are happy. Unfortunately our situation isn't the same. OCD is destroying our lives. My son is always unhappy no matter what we do. He can not allow himself to just enjoy, he is always whining, tantruming about something else. I am a wreck because I am a part of this craziness and at times I really can not handle the stress. It is so sad that I can't even leave the house to visit my sick aunt in the hospital without them screaming and crying and a million kisses and goodbyes and a million "oks" and saying i love you too just right. It's a miracle I haven't had a heart attack yet.They got strep- it was terrible, yes- but the world did not end...for me it's as if the world did end. My son used to bang his head on hard objects due to strep, now bangs his teeth on things and puts everything in his mouth. Bends down to touch the ground even when crossing the street. If I try to tell him not to do something such as stop in middle of crossing, he has to do it again. He refuses to listen to me completely oppositional. Until we had him on antibiotics he would just keep getting recurrent strep infections. I can't imagine taking him off. you spoke of prophylactic dose and getting strep, we are not on a prophylactictic dose because we never got to the point of being well enough to lower the dose. OCD is annoying but if ti's just washing hands or doing things repetitively for yourself, I think its liveable as long as you can be happy and have a life. But, when OCD destroys your life, everyday is ###### and children lose out on their childhood and innocence then it's just so damn hard. I m really happy your daughters are doing well I pray for all our children to do well!

Wow Denise thanks for the offer but I think you have your hands full too! HEres praying that we will all find some relief soon with our children healthy and well!

So sorry for your situation with 3 children! Ds13 just had some of Dr. S tests done and these looks like them. You can go to his website and look them up on 'Rosetta Stone Table' but they are difficult to read-son's dr. had to do a phone consult with Dr. S to figure them out. Here is what it looks like based on my result readings (so could be way off): DRB1*4: multisusceptible (?)/dinoflagellates (do not know what this means...) DRB1*01: Low MSH (this can indicate mold and/or mico - and not sure what else) Best wishes for your children. It looks like you are on the right track which is great! Just getting to the bottom of the problem(s) is 1/2 the battle and recoup time the other 1/2. See if you can possibly get some alone-time to sort it all out (easier said than done!). Take care and keep posting. Thank you Julia! I wish your child a speedy recovery as well!

We take the tindamax 2 days of the week 1/2 pill in am and 1/2 pill in pm. But, we took a break these past two weeks. Actually I stopped all meds for 48 hours and then administered 1/2 dose for several days but I don't see the benefit he is worse than ever.

Hi thank you for taking your time out to give me a lengthy and informative response. If you can send me a pm with the NJ doctors name again I would appreciate it. I believe at the time I called he was not accepting new patients. I would also love to speak to the mother who saw both doctors. I no longer see a DAN doc to be honest I could not afford it with all our other expenses. I don't think we have a mold issue we had done construction a few years back and we have hard wood floors and a built in humidifier, I don't think it's an issue. With regards to viral infections lol everytime we went to pediatrician they brushed us off saying it's viral. So... I'm sure that can be an issue who treats with antiviral meds? We do seem to be getting more immunodeficient as time goes on. sigh...i'm wiped out and don't know how to proceed without winning the lottery.

Roughly 25% of the population has a genetic predisposition to having problems with handling the toxic load that comes with lyme. This is why the lyme vaccine was only on the market for 2 yrs in 2000-2001. So many people had adverse reactions and actually developed arthritis and other complications from the vaccine because they had the genetic marker of HLA-DR4. Other people have other variants of this gene that makes it difficult for them to handle mold toxins. So they can be in a building with a little mold and struggle when others seem to have no problem. This explains it best: http://www.survivingmold.com/diagnosis/the-biotoxin-pathway then go to lab results this has the same info but I like the way it's presented: http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html Thank you so much for those informative links. I got this explanation from Dr. Jones office yet I haven't received any specific info to our case. HLA patterning is done on any child diagnosed with tick-borne illness because HLA DR2 and HLA DR4 are associated with an increased tendency to have a Lyme induced autoimmune reaction especially if bands 31 and 34 are present. The results of the HLA patterning can help a lyme dr determine treatment protocol. HLA DR2 and HLA DR4 are each of the thousands of markers(antigens) found on the surface of our cells to denote "self" in immune system recognition. These markers are found in 15% of the population and have no pathological significance unless one has Lyme or other tic borne illness. HLA DR2 and HLA DR4 together with the Lyme Borrelia burgdorferi spirochete 31 or 34 antibodies are associated with the development of an auto-immune process which persists until the Lyme bacterium Borrelia burgdorferi is eradicated. This Lyme induced auto-immune process is rendered less intense by Plaquenil (hydroxychloroquine), an antimalarial antibiotic which also kills spirochetes. In addition, the presence of HLA DR2 and HLA DR4 predisposes a person with LYME disease to have an auto-immune reaction, which explains the possibility of having a high C3d immune complex. A high immune complex indicates one to be making antibodies to their own tissues. A high immune complex indicates one to be making antibodies to their own tissues. A high immune complex result can decrease while Lyme is resolving or has resolved.

Can anyone explain to me what hladr4 is and it's relation with Lyme? Thank you!

Can anyone explain to me what hladr4 is and it's relation with Lyme? Thank you!

I am hoping someone can offer some reassurance that I am on the right path. I feel so helpless and can't see any hope anymore. I am trying to hold back the tears as I type this. So I have 3 children who have pandas diagnosis. We definately have recurrent strep infections prior to staying on antibiotics. My 8 yr old son has tried numerous antibiotics and I have seen improvements in certain things but never to a good enough improvement. He has had ivig 3 times and I have seen worsening but never got to place of improvement. Now he has been treated clinically for Lyme/bartonella. We switched antibiotics and since beginning of June he us taking cipro in addition to rifampin and tindanax and probiotic. He is doing so much worse. Nasty, like a bully and demanding OCD just right phrases need to be repeated to him in particular way and things he didn't do for so long are back and things he never did like blinking eyes are extreme at the moment. So what does this mean? Every time there's worsening I am told it's herxing but I never get to a better place after the herx. I'm babbling and so frustrated because I am giving so much antibiotics and not certain that it's bartonella. Worsening is supposed to be hood sign but when will I see improvements? I also got copy of some labs Can you explain to ne what the the Drb1*04:jufr is dr jones wrote a positive near it. The following alleles were found:drb1*04:01, and jufr. What dies this all mean? Ty, Tami

For those of you already detoxing, what can I expect to see. What changes should I keep an eye on, will behavior improve ? We were already on rifampin too when we added in cipro because azith/rifampin didn't do anything. How long did u use cipro I worry about long term use. Thnx

Activated charcoal absorbs toxins need to make sure taken away from antibiotic cause will absorb that too. Dr j said we should use saccgaromyces boulardi with bifidus. I searched all over Internet and finally found one product that has both in it. It is called primal defense kids by garden of life it is a powder with natural banana flavor.

How old r your children and how much do they weigh? That sounds like a big amount if activated charcoal for an 8 yr old. Im nervous I wish dr jones offered advice on detixing

Hi all, I'm looking from suggestions from nurses, doctors or anyone with young children that are using supplements to detox for Lyme/bartonella. We see dr jones and he hasn't suggested to take anything. My children are 8 one is about 67 pounds and the other about 43. I don't know where to start and I don't want to give too much of anything which also can be harmful. My kids have been on antibiotics for so long. After switching to cipro/rifampin I see herxing. Any suggestions welcomed. Thnx, Tami

I think dr b will sign paperwork he won't prescribe unless u become a patient.

'Hi, Where do you live? Regular doctors don't believe the titers will show evidence of anything except a past infection. My son had elevated mycoplasma titers and an infectious doctor said it means nothing, he looks fine Oh really!!!!! Anyway is it possible for you to get a script for blood draw from one of the PANDAS specialists. They could do a phone consult if too far. I'm sure people on the board could offer suggestions to you through private P.m. Your doctor isn't willing to do a trial of antibiotics to see if symptoms improve? I know how closed minded so many are. I'm sorry I know this must be stressful and frustrating for you. Fortunately you have found this forum and there are many caring people that you can confide in and who will not dismiss your fears. Good luck!

Hi Dave, I'm sure others will chime in but I would test mycoplasma pnemonia igg and igm ,streptozyme, anti dnase b, ebv, Lyme western blot, pneumococcal titers, igg subclass, Ige level, igg, iga, igm levels. All the best, Tami

Hi I didn't read any of the other responses but I just wanted to share our experience with you. My children also see Dr. B and Dr. J. Dr. J is treating or lyme and suspected bartonella. We were treating with azith, omnicef and in February Dr. J added rifampin and tindamax. We saw no herxing and no added benefit to taking all these meds. In May my son got very sickly looking and had terrible cough so we stopped all meds and went on cipro which treats mycoplasma and good for bartonella and probably strep too. He seemed to improve his cough and we had ivig so not sure what did it. Anyway after 10 days went back to all the previous meds which did nothing. So now after my recent appointment with Dr. J we are on a higher amount of cipro in combination with rifampin and I am definately seeing worsening of symptoms. All things that weregone are now back. I haven't yet added tindamax to the mix. I pray this worsening is the start of improvement for us. So perhaps the typical meds aren't working and you need something stronger. Cipro worked for those 10 days on getting rid of some tics my daughter had too. good luck!

My children were taking rifampin, omnicef and azith to treat bartonella and strep. I wasn't seeing any benefit at all. We recently switched to rifampin and cipro. I am seeing herxing, alot of OCD things that were gone are now back. It's so hard to deal with... Im not dealing too well but I hope it's a good sign.