JGsmom

I have a front loader and I leave the door open after every wash, wipe the door with a rag aand leave it to air dry. Reduces the odor that front loaders get. You also can leave the door of a top loader open to help air out.

I will be attending all three days. If someone has a question they would like me to pose to the experts on the "Ask the Experts" forum, I will try. For example I will be asking about the role of IVIG in treatment and how often is indicated. I cannot ask about specific patients or cases, but a general question for info I would be glad to try to ask and report back. Terry

I recently opened up a credit card specifically for all our medical expenses out of pocket and marked it 'medical' on the front. This way I have a paper trail of all our medical expenses and an easy way to track them all as the receipts get a little bit much. Of course I retain the receipts as well. Don't forget the miles to travel to the pharmacy to drop off and pick up your Rx's. I didn't think of the food we eat when we travel..... I'll have to start putting that on the medical credit card as well.

I agree-I know the Dr. you have called, and recently I had problems with call back. I just called and stressed to the servive that I hadn't been called and could the office mgr. please call me. I rec'd a call back within 2 hours. try again.

Hi--we see Dr. Jones, but recently someone suggested someone closer to home, Susan Neuber, NP. We would still see Dr. J but since he doesn't feel children need detox and I would like to seek out alternative treatments, I was wondering if anyone was familiar with her and/or had been treated by her. She is in the same town as my pediatrician and neurologist, so it would be very convenient. www.lymecenterne.com thanks, Terry

Tami--how far are you from new Haven? Dr. Jones is excellent.

sptcmom, I appreciate your input and you have given me some things to think about, but I am not quite clear on what you are trying to convey. I personally do not think that there is a true 'cure' for any auto-immune disease to my knowledge. I agree that PANDAS does not live alone, witness the huge numbers of children with PANDAS/Lyme and PANDAS/ ASD and PANDAS/Lyme/ASD. My understanding is that borrelia also suppresses the immune system. Borrelia potentially is not eradicated from the body, though WB may be normal and pt. is asymptomatic. Animal studies show attenuated spirochete in the brain, knee joints and myocardium on post-mortem, though asymptomatic and blood work normal. Many other auto-immune diseases are helped, not cured with IVIG, ie--rheumatoid arthritis (RA), lupus, even MS. It does not cure these conditions but helps pts. manage symptoms and live a somewhat 'normal' life. My mom suffered w/ RA for 20 years becoming a twisted, deformed mass of pain before she died. I think she would have liked the 'band-aid' of IVIG, it would have improved the quality of her life. She lived on methotrexate, a chemotherapy drug, and prednisone to manage her symptoms. IVIG, in combination with the right abx, has improved the quality of my son's life and we are nowhere near any type of cure. IVIG in and of itself is not anti-inflammatory, but the inflammation in the brains of our PANDAS kids is theoretically from auto antibodies attacking the brain stem. This is our normal immune system gone haywire. Theoretically, IVIG is used to calm down that haywire anbormality, and as such, decrease inflammation. No one knows how long it will last. I do not know what an epiphany moment is or how it applies to Lyme, but I am happy for kids whose immune system can recover for them to fight the Lyme. My understanding is that Bb suppresses the immune system so that it can not fight the spirochete and IVIG helps it to stay strong and fight the bacteria. If IVIG's 'borrowed immunity' helps my child's immune system fight off Bb and bartonella, then I'm all for it. We have not found it to be so horribly invasive. A true Jarish-herxheimer reaction only occurs with syphillis and Lyme, to call the healing reaction to IVIG for PANDAS a herx is a misnomer. How do we know how the brain heals? To equate symptoms of brain healing with other organ healing symptoms is too simplistic, in my opinion. I feel that many adverse 'peeling back' reactions are due to undiagnosed Lyme and/ or co-infections. My son only had bad reactions to IVIG when his bartonella was undiagnosed and he did not have an abx cocktail for his Lyme. He was only on one abx as we thought he was asymptomatic for lyme. Well, I am grateful for the IVIG because it brought to light the underlying infections. Many integrative docs are using LDN, or low dose naltrexone, as an immune booster, using the body's opiate receptors to boost endorphins and increase immunity. It is used for other auto-immune disorders such as MS and IBD. It also is not a cure, but the idea is to help healing, manage symptoms and allow for a more normal life. I have not yet explored the things you mention, glutamate, etc., but I am open to learning about them and picking and choosing what might work for our family and for DS. I agree that stress, nutrition, excercise play a big role in healing and managing symptoms. I believe that genetics and environment play a big role in illness. My personal feeling is there may not be a cure for my son's PANDAS and lyme. But I will take the management of those symptoms and anything that allows him to lead a full life. There are not many docs who can agree on what is proper treatment and what needs to be addressed first. I think we are all learning and there is much to explore and try. I will be going to the ILADS conference in October to try to learn more. There is a presentation on PANDAS and I will be happy to report back what I may find out. You said the key is knowing what to treat first and there after and peeling back the layers. I honestly don't think anyone has that key yet. I wish they did. Terry

Thanks, Wendy. I am going to discuss all this with Dr. Jones and Dr. Bouboulis when we go to CT next week for IVIG. He has not done any S. pneumoniae titers since a year ago. I would be curious to see what is going on with that as you said. Actually, I did not think that the IVIG suppressed a normal immune response, I thought it helped decrease the hyper or auto immune response by letting the body know it had enough antibodies and calming down the auto antibodies. In any case, he has been slowly improving and I am sooo tired of packing up every 8 weeks and sending his twin to his dad's and doing the drive. Recently his father has given me a hard time about the cost of all the treatment. It's hard to let go of the IVIG when you see all the improvement. I do see him improve even more with the IVIG now that he is on the right abx mix. Thanks for the support. Glad your DS is improving, I know you have your hands full. Terry

My ds 12.5 has PANDAS and neurologic Lyme and Bartonella. We started IVIG a year ago August for just PANDAS, before we knew about the Lyme. At that time, we thought it would be a 3 time thing. However, we have done IVIG every 8 weeks ( with some every 6 week doses during the summer) now for over a year with abx cocktail including tindamax on weekends. He has improved greatly; he no longer has the incessant cough/sneeze tic he used to have, he has hardly any tics that I can see now. He had a movement disorder, myoclonus which saw him falling over from involuntary muscle jerks, which we see only mild occasional twitches now. Unfortunately he has lost his math abilities and has ADHD which we are trying to treat with non stimulant meds in order for him to function at school. I am happy to see the improvement, though I feel he still has a ways to go. My question is, is anyone else or has anyone else done IVIG for this long? It is becoming financially and emotionally wearing and a burden. I have to take time out of work every 8 weeks and recently a 500 dollar facility fee was added on to the office where we go to get IVIG, each time we get IVIG. Since we travel 3 hours, there are hotel costs and food and gasoline. My son loses 3 days of school every 8 weeks and make-up is difficult. Do we need to go every 8 weeks or will he get benefit every 10 weeks? Any opinions or insights would be appreciated. Terry

Wendy-- You have such strength--3 children with congenital TBD, etc. And I was feeling sorry for myself when the second one got dx'd. I have been very upset and worried about both, but DS-G with the horrible post-prandial pain and gas and morning stomach aches has me very upset. Dr, J does suspect bartonella for DS-G since DS-J has it. I have a phone consult set up w Dr. J for tomorrow as this is perhaps longer than a herx should last? Hopefully we will come up with something for DS-G. I didn't post here for quite a while as I have been taking DS-J to IVIG 3 hours away at Dr. B every 6-8 weeks and I bought the business where I have been working for 23 years and became a business owner--great, but very stressful to manage with 2 sick kids, as I'm sure every parent on this board knows. So it left no time for writing. I came back because I needed some advise from you all about my second little man. It's great to reconnect. Terry

Laura- thanks for the info. DS-G won't eat a morsel when he gets up. But I can try to give the glutatione with abx--he refuses to take anything new that he doesn't have to. Funny enough, the last 2 nights when he felt badly, he asked for ice cream, which he said made him feel better?? So, I told him he could have ice cream every night if he thinks that will make him feel better. Needless to say I saw a smile for the first time in a few days. if that's what it takes.... We are taking plain theralac daily, but I think I will drop it down to once a day instead of twice a day. Enjoy your vacation--thanks for writing. Terry

tpotter, thanks for the heads-up. DS has been checked for H.Pylori and just recently started his abx ( 2 weeks ago) and had probiotics from the beginning, so c-diff would be unlikely. However, he has not been tested gor Giardia and that's a very good idea, thank you. I will not start him on anything new yet as we are still struggling with the abx regimen. Again, tonight, I decided to not give him his tindamax, as he did get one full day of it and to give him a break as he is white as a ghost, huffing and puffing as he walks from room to room and has no stamina on the abx. Thank you so much for your input.

Hi Wendy-- Thanks for the info--yes, we did PM and you thought I was related to somebody b/c I'm in RI. You have a good memory! I do have 12.5 yr old twin boys, fraternal. They are keeping me hopping! I did not realize you have twins as well. I know if it tastes icky, he won't take it--capsules may be better. He has no other bowel issues, no blood, no distention, no diarrhea or constipation, just the unrelenting GERD. So, we will take it one step at a time. I'm happy to reconnect with you--I always wanted to let you know that you were right and we needed to be in Lyme tx. That son w/ PANDAS and Lyme also has Bartonella--I found the rash which my ped-doc said was stretch marks and Dr. J confirmed bartonella. No blood confirmation of bartonella until the 3rd blood test finally with Specialty labs. This son with the GI Lyme tests neg. for Bartonella but Dr. J suspects he does have it and will re-test again. The so w/ GI Lyme is not a PANDAS kid, thank goodness. Thanks again, Terry

Thank you, I will look into the pearls and Detox as well. I appreciate the input greatly. Terry

Hi Wendy- thanks for replying.You and I had some conversations re: my other son about a year ago with PANDAS and 2 positive bands that everyone said wasn't lyme and you said go to an LLMD and we had to as after his 2nd IVIG he started with seizure looking myoclonus that indicated neurologic lyme. Anyway DS-G with GI Lyme actually is on many GERD meds, Prevacid increased to twice daily, and Zantac once to twice daily as needed. He was chugging liquid antacid as well--TUMs are no longer effective. He also takes 6 GAS-X at a time as this dose seems to help him. He has been taking some of these meds since '09 but not in these high doses. It was b/c all these meds didn't work that I suspected the GI Lyme. I do agree that S. Boulardii can increase gas and stomach upset--he does seem to tolerated the Culturelle well. I was also worried about the Theralac as it does have bifidus in it that can upset the bowel. So I am only giving one S. Boulardii twice per day ( to prevent yeast) and one Theralac twice per day. I also make my own home made SCD yogurt which I may start him on and decrease some of the other probiotics. How do you give the bentonite clay? And where do you find it? Old Kaopectate used to be bentonite Clay but the formulation has changed to that of Pepto-Bismol and can't find the clay. thanks for your valued input, Wendy. Terry

I would RUN, not walk to get your IgG kids treated. Positive on IgG is evidence of older infection, not necessarily 'past' as in 'done'. They are still infected and it needs eradication, if at all possible. treated pts can return a negative WB eventually. Untreated Lyme only gets worse and harder to treat with time. The insidious nature of lyme symptoms means that your children will get worse with time--it happened to us. Please take them for treatment and don't wait.

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is. Thanks. Terry, So sorry that you are going through this. You are in great hands w Dr J....have you told them about your son's lack of eating while taking the medicine? One thing they advised me to do during treatment when i was in a similar position worrying if my son was herxing or just getting worse while on tindamax was to stop the medication for two days to see if he feels better. Then you know it's a herx. (granted we were 18 months into treatment, not two weeks) It was a herx for my son and I can tell you Tindamax really causes some huge die offs and bad symptoms. My son felt like he was dying after the 2 nd day of tindamax. I believe the Tindamax helped him get rid of Lyme though. I remember how hard it was to get my son to eat and take his pills before running out the door for school. If you don't eat with the pills it can really bother your gut although azithromycin is not hard on the gut like doxy. He often didn't want to take it and I would find pills under the couch, on the floor, etc. I had to watch it go in his mouth to know he had taken it.we tried bribes, threats (if u dont take your meds u cant go here or there...)you name it. Is he taking enough probiotics? Our other llmd (not dr j) had us all take 4 probiotics pearls a day w antibiotics and this helped a lot. The pearls are slow release and do not get killed by the drugs. Also are u using anything to detox gut like bentonite? We did that too per a nutritionist that sfmom and elizabeth use. I think it was helpful. When my son got Lyme at ten years old we had no computer games but we ended up getting some to give him something to do while he had his Picc line. U can't swim and play sports w a Picc. We got wii and rock band and this entertained and bribed him when he was sick. He did not get addicted to the games either and once he was well he never touched them again. I guess he associated them w being sick. That is fine w me because he does more creative stuff with his free time now. Hang in there! Thanks lyme mom-- he is taking probiotics separated form the abx--what are the pearls you are taking and where can I find them, please? I let him watch his netflix favorites as he says it distracts him and I know he has an X-box at his dad's--but he does get sicker ther--poor food and anxiety as his Dad has little compassion. I love dr. J as he is treating my other son now for quite awhile. As I said--he takes the pills but refuses the food in the morning. Anything he wants to eat I will make him. He craves junk when he feels well and I have explained that we need to support his immune system with god nutrition. His attitude in general is not good. Dr. J says detox is not necess for kids but i would like to do something. I don't know where to find the clay or how to dose it or arrange it with the other meds so it doesn't interfere with the absorption of his meds. Thanks for the support. Terry

Thanks, mich--anxiety does make it worse for him and he does have some Xanax for those times, but I do not feel the stomach aches are from anxiety in general.

Thanks--how much and how often? Can you give it with the probiotics? Thanks, Terry

DS 12.5 newlt dx'd w/ GI Lyme ( strong possibility) having stomach pain and general ill feeling on his 3 new abx started all at once: Zith 250 twice daily, omnicef 300mg once daily and Tindamax 125mg twice daily on w/e. He is only getting the zith once per day as he can not tolerate twice. He also gets one Theralac twice daily, one S. Boulardii twice daily and 3 Culturelle twice daily. That's it--any suggesions? Dr. J feels that detox for kids is unnecessary--but I feel my child needs help. Thank you. Terry

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is. Thanks.

Hi, I'm a mom with a PANDAS/OCD child with neurologic Lyme and I happen to be a general dentist. Dentists deal with very anxious people on a daily basis and our training includes how to reassure and rationalize and treat anxious people. Kids are high on the anxiety thermometer. Until I had an OCD kid, I probably would have reassured an OCD kid up the wazoo. A suggestion would be rather than trying to explain PANDAS to the ortho, etc. would be to tell them he is a very anxious kid with excessive compulsive habits that are based on anxiety that we don't want to feed by excessive reassuring and lingering on excessive hygiene habits. I would remind all auxilliary personnel and ask that it be placed in the chart that excessive reassurance and talking FEEDS his anxiety. They will get it or you will find another dentist that does. For example, my DS is congenitally missing a permanent tooth under the existing baby tooth. I have pulled aside his orthodontist,my colleague, and asked him not to mention this missing developing tooth as it will cause DS great anxiety and I will have to answer many questions over and over again that do not need to be addressed at this time. I have had to remind his assistants as well as my hygienist not to mention it, every time he has an appointment. I asked for it to be noted in the chart. I know it can be tiring to remind health personnel things about your PANDAS kid, but it is a wonderful opportunity to educate people about OCD , which is misunderstood, and PANDAS, which is not very well known. You might very well unknowingly help another child get diagnosed properly.

My 12.5 DS (G), is being treated for strong possibility of GI lyme. His LLMD ( Dr. J) started him out on zithromax 250mg twice a day, Omnicef 300mg once perday and Tindamax 125mg twice a day on weekends only. DS's symptoms have been severe GERD stomach aches mostly at night, but the abx have made him much worse--so much so that I had to back off and only give him one dose of zith daily for the last week and a half ( we've only started tx approx 2 weeks ago) and the taste of the half tablet of the Tinda 250 made him gag, want to puke, so I put the half tab in a charcoal capsule that I had emptied out, which worked. I also only gave him one day of Tinda per our LLMD. He had severe GERD and polyarthralgia in December of '09 with serological evidence of Lyme by Lifespan ( Quest) Labs which was treated fairly successfully with one month of Amoxacillin at that time ( we were not Lyme literate then) He was fine for one year and then the GERD symptoms started creeping slowly back in over this past year. In the meantime, his fraternal twin, (DS-J), had been dx'd with PANDAS by Dr. B who tested him for Lyme and subsequently neurologic Lyme symptoms appeared and we became more Lyme literate, so that when DS- G became very bad and did not fully recuperate from what appeared to be a 24 hour stomach virus, I asked the ped -doc to test for Lyme at IgeneX. Came back indeterminate, but I brought him to our LLMD. LLMD feels DS-G is having a herx--I am not convinced. DS-G refuses to eat, he says food makes him worse. He is already a skinny kid--80 lbs. It is hard to watch him in so much pain and I try to get him to take the abx with food, but he refuses. He takes the meds, but won't eat. He begs me everyday to take him off the abx. Every day is different, so it is hard to say if he is improving, or if it is a herx,or, is he just not able to tolerate the zithromax. I am afraid to add in the extra dose of zith in the a.m. as he won't eat in the morning at all until around 11 am. On weekends, that's OK but during the week he is at camp and that's a problem. The zith seems to bother him much more than the omnicef. I was wondering if anyone else has a child with GI Lyme or anyone has the same problem or does anyone have any suggestions that would be greatly appreciated. Terry

Kara, Was your son tested for Lyme disease by Dr. B? Sometimes the abx provoke a response in an otherwise asymptomatic child. It is worth getting tested.

I don't have OCD or PANDAS and none in my side of the family. I never had strep throat and don't remeber being ill that much. My sibs used to get strep and tonsillitis together at the same time, I remember twice as a kid. My mom diagnosed with RA in her fifties ( autoimmune) and I was dx'd with mild Ulcerative colitis ( also thought to have an auto-immune component) in my late 40's. Currently in remission without any meds. DS with PANDAS ( and Lyme, Bartonella) is a fraternal twin. His twin doesn't have PANDAS. Their father has OCD which became more apparent after their birth, which he finally took meds for, but has since come off his meds in the last year or two .