Hopeny

Thanks everyone, I will pass these along. we see Dr. B. but at this stage they do not want/do not realize they may need to travel. It seems like there are some good qualified practicioners close by.

My sister is trying to help someone whose suspects PANDAS, they are just getting started and at this stage do not really want to travel. I know I have seen warnings about CHOP where they were thinking about going. Please PM me or post. Thank you!

Thank you!

My DD has Lyme/Pans and is being seen in NY/CT. My niece is 12 and has a LONG history of what was thought to be PANDAS, tics, behavioral issues, textbook OCD rituals etc. She was on Zith for 1-2 years and literally as soon as abx were stopped, tics came back. She got bad leg pain on augmentin and had to stop. Now she is on Cefdinir. I have been asking about Lyme as a possible reason as to why she was not recovering. I just got a copy of her stonybrook test which has band 93 IND which our LLMD told us 100% convinces him of Lyme, he said he does not need to see anything else with that result. (gave me a paper on this topic too) To complicate matters they live very far outside the US, and my SIL is very concerned about the prolonged use of Abx. It is going to take me a huge amount of convincing to get them to bring her here for treatment. Due to the severity of her case which has gone on for years, and my SIL's views and prefernce for naturals, I was thinking that maybe I could try to convince them to see Dr. K. If you have seen him please pm me what yor experiences have been, does he use abx and naturals, is he open to PANDAS if you know etc. Any suggestions are welcome. Just as an aside, this makes a niece with Lyme, a nephew (differet sib) who got Lyme and recovered, my DD with chronic Lyme and my 3 yo who got a bullseye this summer. There has got to be some genetic predisposition here! Many thanks,

I was torn too and put it off. DD tested negative for Bart by Igenex and Quest, had no stretch marks, and was never off abx long enough to do the other lab I can't recall but everyone says is the best for bart, but she had foot pain, psych symptoms, and some anger. Her pain got better but then came back, so I decided to try Rifampin before taking another good look at IV. About 5-6 days after starting, I notice a bunch of stretch marks have shown up in middle of her arm. Wow, validation. Thank goodness we decided to try it. Good luck with what you decide. That is good to hear! I'm torn. Don't ever know how these kids will react. And if finals are coming i don't know if i want to chance him getting worse and having to deal with that. On the other hand, i want to keep moving forward.

Glad you have found a Lyme doc. You may want to consider dropping the cod liver oil and multivitamin until you get some guidance from integrative, CLO is from an organ, I can't recall the specifics which would be more compellling but i read an article on not giving this to children, it was long ago but whatever it said convinced me never to use it. Also with the vitamins, a multi made my DD worse. Some vitamins actually feed the Lyme spirochete and help it multiply. Regarding knee pain, this is a a Lyme flag as well, with or without swelling. My daughter has had all of her extremely severe joint pain without swelling, her knee only swelled once. It is just different for everyone.

dsnow hugs to you, your daughter will recover. I seriously feel your pain. My DD was IGm 23 and 41+ which is CDC POSITIVE for Lyme, no questions asked. I saw this with a big hallelujah because had she not been CDC positive my DD would possibly have been in a psych ward by now. I am not saying we don't have bumps, bad days and regression but thanksfully she is a fairly happy 3rd grader now recovering and in aggressive treatment. So I say thank your lucky stars you got this result so you know what to treat. I don't want to overwhelm you but pardon my french your ped has no *&^% idea of what they are talking about. There is a great book called Cure Unknown i would recommend to you when things settle, which will explain why your ped is misinformed but at present I would say don't waste a minute on the ped and move onto doctors who will help. You need a Lyme doctor - where are you located? My DD did not have vocal tics but others have, you need a team to help you sort all this out. Bartonella, a Lyme co-infection, can cause some of the symptoms you mention. Also how old is your DD? Sorry if you have answered all this before. In my daughetr's case, Amoxicillin helped first and then sent her off the deep end, not kidding she told me she was afraid her clothes were going to hurt her. We switched to Augmentin/Biaxin combo and it worked well. Is Dr T open to trying this combo? It could hold you till you can get to a Lyme doctor. I echo what Christianmom wrote, and it goes for all the wonderful PANDAS docs, they are not Lyme experts. These illnesses are complex and you need a team. Our team we have a PANDAS doc, a Lyme doc, an integrative MD and a moderately Lyme Literate infectious disease doc. We all work with each other. I have finally crossing fingers also found a helpful ped. Also are you using probiotics?

Not sure if your son is on any antibiotics, but my daughter completely lost her appetite when she was on Biaxin and Augmentin. It was not an anorexia thing, she just had no appetite at all. We have switched antibiotics for other reasons and her appetite has completely come back. My husband has used those GNC gainer milkshakes for bodybuilding and they helped him gain weight, he would also mix ice cream in them for extra calories.

Fixit I was worried about the Herx too. We had the same amount of herx we usually have when DD switches meds, one really bad night of crying. She has not said her pain is worse. I have seen a few angry moments worse than normal, but that's about it. We are into week 2 so I may not be the best source of information, but just to let you know in our case was not as bad as I expected. I now for others it has been very bad so I hope you have the same experience we did. Good luck.

Sorry Surfmom not to complicate matters but the regular Lyme tests are not accurate, you need to send to a special lab. My daughter fortunately tested positive with Quest but most people send to either Igenex or Stonybrook. The reason is that Quest/Labcorp tests for something like 20 strains of Lyme while the others test for 30. In any case it may be helpful, there's lots of info on the Lyme board but if doctor says test is negative just make sure you get a copy. You would really need to see an LLMD (lyme literate medical doctor) to rule Lyme in or out. The bedwetting is another sign of PANDAS, my DD wet the bed several times when she had the major exacerbation, she had not done that since she was maybe 5. It will be helpful for you to gague exacerbations now that you know this is a symptom. By the way have you checked the Saving Sammy Facebook page? Beth Maloney keeps a list of PANDAS friendly doctors across the U.S. In our case the neurologist we saw was very kind but not a long term solution. You really have to find the right type of neurologist or you will be wasting your time and $400. You may want to post all the results when you get them to get feedback, doctors not well versed in the tests may not be entirely sure how to read them. Thankfully you have a bridge doctor who can get you there. Personally if an abx was making my DD worse I would drop it and switch.

SurfMom remind me please have you tested for Myco and Lyme? Where are you located? If your ped willing to try a combo like augmentin/biaxin? My guess is that your DD was tested for TB during the adoption process, it is required for immigration. If she had the TB vaccine as a child she likely will have a skin reaction which can result in a very unpleasant course of treatment. My husband had the vaccine and also we later found out has a severe bacitracin allergy, which we did not know at the time, which is found in the TB test. He had a huge skin reaction (same as he had when he got skin tested for allergies to bacitracin) and even with a negative chest x-ray they put him on isoniazid for 10 months which is a scary drug and turned out he was on needlessly. If she is not symptomatic of TB I would leave that one alone personally. Do you know the birth parents history? alcoholism etc? At this stage my guess is that anything from her early years should have shown up by now. However that said maybe worth a consult with one of those MD's who specializes in Russian adoptions, just to cover all of your bases. I looked into Russian adoption once so I recall there were MD's with this specialty.

My DD8 is on 200MG Zith and Rifampin. We switched off Biaxin and Augmentin. Rifampin as I understand is always used in combo with another med, for Lyme/Bart they prefer Doxy with Rifampin but my DD HATES liquid Doxy and I told our LLMD I just cannot face the battle everyday. If I knew it would work though of course I would. You can do go drugs.com and check interactions. Personally i would keep to one abx + rifampin. Rifampin is a big gun. A number of moms on this board said their DC's are also on Rifampin/Zith with good results.

I feel like mean mom for yelling at my kids to stay off leaves, but reading your post I know I am right for doing so!

rsuggs you may wish to reach out to the parents of EW via private message at the Free Elizabeth Wray facebook page, or private message to Beth Maloney on the Saving Sammy Facebook page. The story that has been posted about her is that she had Lyme/Mycoplasma PANS triggered anorexia, her parents took her to Boston Children's Hospital who essentially denied PANS, took her off abx, had the state take away her parents rights and gave the hospital temporary custody virtually imprisoning her in a psych ward. It sounds like a horror movie, if there is guidance you can offer this is definitely a case that could use it.

Red are you sure about the refridgeration? The pharmacy that compunded it for my 8 y.o. gave it to me warm and did not tell me to refridegrate it! ugh.... Wow sorry it is so painful for you, that must be awful. My daughter had a crying/sad herx one night and that was it. I see some marks that have come out on her arm, they are not bright purple but they look like stretch marks. That's it and she's been on for 10 days.

I am pming you a name. He is a pediatric infectious disease doc who is fairly Lyme Literate (most are not) and I know he sees quite a number of pts withs Lyme patients. The cons with this approach are they will have an average time visit with doctor (10 minutes probably) and I am not sure if he would be a great long term solution, I do not know his stance on long term antibiotics because I have gone on to non insurance docs, but at least he could get them started. He is an excellent diagnostician and diagnosed things in both my children that have been extremely helpful, we would have gone in circles for I don't know how long without him, he does not treat PANDAS as he referred us to Dr B for that. Dr. B. takes insurance and is familar with treatment for Lyme/Bart, but is not focused on Lyme,. Long wait list but maybe can get in to see PA, with us that is what we did and then alternate appointments with him. I would highly recommend posting on the find a doctor Flash Forum of Lymenet.org along with emailing TBDA alliance for names, TBDS maintains a list. Good luck to your friend.

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LLM just curious how much methylfolate are you giving? My DD8 has one mutation and Dr O started her on a half capsule of 5-MTHF daily - each capsule is 10 mg so she is taking ~5 MG. You wrote below 200MG so was just wondering. Also how long did it take to see real results. Thanks

We are starting Zith and Rifampin for suspected Bart. DD did not test positive and I was torn about rifampin but her pain continues and she has all the symptoms described, plus foot sole pain and psych symptoms. She is starting Rifampin tomorrow. I am hoping like with everyone this will help. I suspect that Motrin does take the edge off but in her 8 year old mind its still there so nothing is helping. Does everyone give Rifampin with food or on an empty stomach like the instructions say? We had it compounded. I tried a dose last night to see how it was and it made me nauseous later, though fortunately the syrup tastes quite good so at last that won't be a battle.

Thank you, It's mostly joint pain, foot sole pain, and some muscle pain, I can look into the glucosamine. The Physcial therapist told us to use cold, but the heating pad sounds good. I was using those instant heat pads becfore but stopped when the PT said cold. maybe we should go back to hot. She says nothing helps...We saw integrative Dr today who gave her some things for inflammation, essential fatty acids , Qucertin. Starting Rifampin on Wednesday, I hope that helps....

Megan my DD8 has blurred and other vision problems from Lyme. I recently got her whole medical file and saw I note I had written to doctor when Lyme first showed up, this was one of her original symptoms. As I understand the spirochete attackes the nerves, and so this Lyme symptom results from weakened optic nerves. My DD s vision issues have improved with treatment, but not gone.My ophthamologist gave me an rx for Pataday, its an antihistamine, it seems to help a but but I don't use it everyday. only when its bad. Also I read other accounts of Lyme affecting hearing but have not experienced personally

DD8s pain had gotten better, now after six months of heavy abx its back we are starting nex rx for suspected bartonella. Last night she said "mommy please help me" and there was nothing I could do. I had given her an epsom salt bath yesterday. maybe I am not using enough, it did nothing. she won't take motrin, says it doesn't help. hateful anti-lyme rheumatologist we first consulted told me "we can give her something for the pain". I said no way but now I am rethinking taking her to a rheumatologist to get some type of pain relief. I took her to my orthopedist hoping she could use Voltaren which I have used for a foot problemand is awesome but he looked it up and it said not for under 12 and he did not think a good idea. she is getting accupressure, I am not sure if it helps or not. moms/dads - what can I do to help her? just want to add thankfully PANDAS stuff is almost all gone/staying away despite the fact she still has >ASO and Myco levels.

My mother has same ASO and Myco levels as my DD! Dr B suggested 30 days of Bactrim from her GP. So disapointing after 5 months of abx taht we tested DD who has the same level Myco and ASO. (also has Lyme & Co so we are treating for all). Dr B said is either my mom passing to her, my husband who we are testing now or possible resistant. I am going to re-test too. When I was a kid I remember my ped telling me I was one of those people who always had strep in my thorat, I always swabbed +, but my ASO is normal now. It's good to test everyone, we didn't test my husband originally because he didn't go to the appointment and now I wonder if he is a carrier.

The possibility is definitely there that Lyme can masquerade as other illnesses, come and go, and cause various flares. Many people, including my older daughter's case, never saw a tick or bullseye rash. By the way we never camped, she got it in our suburban NYC neighborhood. A tick nymph can be the size of the head of a pin. Consider that they frequently burrow in hair, or for example behind the knees, it is extremely easy to miss which is why so many get sick. 30-50% of people with Lyme disease do not recall a tick bite or bullseye rash. In my daughter's case we were told she had a virus after the first presentation of symptoms, leg pain, headache, lethargy. Then she got better. Then that summer she had massive respitory issues which were diagnosed as croup, then asthma, then a sinus infection. Then she got better. She had some episodes of sudden onset of what seemed to be depression. Etc. Then she got better. This went on for 2 years. She started to have persistent leg pain, and finally got tested, fortunately she tested positive as many do not for various reasons. In playing Monday morning quarterback I figured out she had gone undiagnosed for 2 years. I am waving the Lyme flag because when I am reading your post about leg pain, lethargy and dark circles, it reminds me of my daughter's case, especially that steroids made it worse. Lyme is an extremely complex and little understood illness, causing many types of symptoms, which can include tics. ILADS.ORG has lots of good information about Lyme. It may or may not be relevant for your son, but if it is, it is important to diagnose and get treatment ASAP, and especially not to give any more steroids. I hope this is helpful to you, the cause of your son's leg pain, Lyme or something else is a symptom that needs exploration.

momma2 sorry if you have posted already but I am wondering if your son was evaluated by a Lyme Literate doctor for Lyme & Co-infections, which are also PANS triggers? the reason I am asking this is because you mention leg pain, lethargy and eye circles which are all fairly common symptoms of Lyme. Steroids will actually make Lyme worse. Unfortunately my DD8 was given oral steriods for a serious of misdiagnosed ailments that turned out to be Lyme. I will give the quick history and symptoms she had as this might be helpful to you. My DD has Lyme & Co, elevated ASO titer and Myco P, MTHFR mutation 677T one copy. She was undiagnosed for 2+ years with Lyme, she never had a bullseye rash but did have patches of rashes. She also had a number of + strep cultures, with no sore throat, at the original presentation of Lyme symptoms and in the massive flare that led us to seek and finally find answers. She had/has sudden onset of arthritis like leg pain/joint pain (shoulders, hips etc), visual disturnances, stomach pain, headaches, dizziness/falling, suicidality, extreme mono like fatigue/lethargy, obsessive/repetative thoughts, compulsive skip picking - no tics. Initially amoxiciilin helped the symptoms abate, but then they came back with a venegance after the 28 days. We then tried high dose amoxicillin, she got worse and seemed to be developing psychosis, we gave her 5 days of Doxycycline that was incredibly helpful and then alternating courses of Augmentin/Biaxin and Doxy which have been incredibly helpful. She is much much much better. I found the Biaxin seems to be very helpful in combo with the augmentin. It is very complicated with Lyme as typically when you begin treatment there is a worsening of symptoms called a Herx as the spirochetes die off. However, it seems in your son's case it has gone on too long IMO to be a Herx, that there is something else at work here. My DD has an infectious disease doc, PANDAS immunologist and LLMD that we see, along with a new integrative doc we are seeing in two weeks, in addition to our ped. My approach has been a medical team because of the complexity of the illnesses, need for expertise, and my reluctance to rely on any one doctor. Please be aware that Lyme testing is at best "directionally informational", which is why I am asking if your DS has had an evaluation by a Lyme expert. If you have any further questions please PM me, I am happy to give you more info,.