Dedee

This is awesome news! So happpy to hear. Thanks for sharing. Dedee

What does the lyme test say exactly? Many physicians who are not trained in lyme will read a test as negative that is really positive. You need a lyme specialist to read a lyme test. Dr. T is wonderful but he is not a lyme specialist. You need to educate yourself in this area as it can be a trigger for PANS. Not saying this is definately it, but should be ruled out by something other than a "negative" on the test results. JMHO. Dedee

Your post says it's best to just start with your son's tics. Is there anything else going on? This is important. Are there other symptoms? Anxiety, Frequent urination, Seperation anxiety, unusually clingy, very irritable, moody, explosive, signs of OCD, any other behavior changes? If there is something else associated with the tics you can most likely rule out TS. That leads more in the direction of an infectious trigger. You would want to look into finding a doctor who has experience treating PANS. You may find that things would clear pretty rapidly with antibiotics. Many PANS kids will only experience tics and the behavior changes come later. It is absolutely worth looking into. JMHO. Dedee

We are currently working on the cytokine cascade with the help of our LLMD. She suggested Buhner's book and wanted us to address this with our daughter. The first thing we have introduced is by Dr. Amy Yasko and is called "Cytokine Balance Inflammatory Pathway RNA". It is a little expensive but it goes a long way. We have been using it only about a 4 days but it does seem to be helping to calm our daughter. You have to start slowly so we can still increase. Right now we are giving 3 drops in water 3 times daily. The good thing about this for us is that it is tasteless, which is huge with our dd because she won't take liquids with a taste. I have ordered Japanese Knotweed, which was suggested by our LLMD as was Cordyceps and Chinese Skullcaps. We will wait a few more days before starting the Knotweed. I have heard good things about the Japanese Knotweed but I'm not sure how it plays out in strep. I have heard that many of the cytokines released with lyme are the same as with strep, thus similiar symptoms. I can't say that I know this with 100% certainity. I do think you are on the right track trying to address symptoms through cytokine control though. Keep us updated on any progress. Dedee

So it does seem that he is developing some type of OCD or at least Anxiety Disorder at this point. Did he say why he didn't want to go to the store? You have gotten good advice from the other posts. I would encourage you to make an appointment with a PANS specialist as soon as possible. You need to get lab work to check strep titers, Mycoplasma titers and check for other viruses. Unless the Neurologist you are seeing specializes in PANS then you are most likely wasting your time. You can get some good information from the pandasnetwork.org website. Also, you might try some ibuprofen to help with symptoms until you can get in to see a specialist. Dedee

If it were me I would still go. Your doctor will be drawing blood to look for infection, and looking for immune issues. These things will not change even if your daughter is having a good day. I doubt that this issue has resolved. Most likely you are just getting a reprieve. Your doctor may think this is Tourette's but remember that Tourette's does not come with OCD symptoms, moodiness, behavior changes, etc.... These are all symptoms of PANS. Many kids have issues with having their blood drawn. My dd is terrible. However, this is a very important part of the puzzle so I would recommend getting through it any way you can. Make sure she is laying down, etc.. It's good you found someone four hours away. That's not too bad. Our LLMD is four hours away, but our PANS doctor we used to see was 11 hours away. It will be well worth your trip. Keep us updated on how things go. Best of luck on your trip. Dedee

I can say that we are pretty much in the same place with my 17 y.o. son. He is a strep only responder and has had PANDAS since age 6. Got his tonsils removed at age 11 and was then on antibiotics from age 11 till 16. Been 95% since age 11 but titers have always been just slightly above normal. We have used all sorts of antibiotics to try to get them in the normal range. Prior to having his tonsils out his AntiDNase B was 2,740. Dr. M says that considering what it ran during those times we are considering this a victory. He has absolutely no signs of infection anywhere and the slight bit of eating issues left over is believed to be "stuck" OCD from the early years when he really wasn't getting the appropriate treatment. Dedee

You should see an LLMD for treatment options. Your average physician and even a good PANS physician will not know the best treatment for lyme and co infections. You need a lyme doctor. Dedee

Your pediatrician should be able to order strep titers and Mycoplasma P titers at a minimum to get started. In the mean time go ahead and do a throat swab and have them run both a rapid strep and culture it also. Make sure they get a very good swab. You should not wait months to get started on antibiotics. You can get some good information off of the Pandasnetwork.org website for your pediatrician. If your pediatrician isn't helpful you need to be insistant or change doctors. This is not a time to play nice. JMHO. Dedee

When my daughter regressed after IVIG we used benadryl and motrin to get through. It really helped. Dedee

Oops sorry double post.

Please remember that a negative lyme test does not mean she doesn't have lyme. Her tests should be read by an LLMD not someone who isn't educated in Lyme and Co Infections. Bartonella is a lyme co-infection and causes rages and many other symptoms you are describing. It causes severe neurologic symptoms. She should be evaluated by a top LLMD. Dedee

I have ordered the Japanese Knotweed, and Cordyceps. They havent come in yet so we havent started. I am concerned about some of the tinctures that Bruhner recommends because of the taste. My daughter absolutely will not take any liquids that have a taste, not even mixed in with a drink. She will take capsules so I am limited on what I can use. Rowingmom, what has been your experience with the taste on some of the tincture? So glad to hear about your experience. Dedee

Have you checked for a recent infection? Maybe you should consider a throat swab or titers to see if he has been exposed to anything lately. Anytime my son starts his bathroom trips it usually means he has strep. Just a thought. Dedee

Try reading the book Lyme Co infections by Bruhner. It talks about addressing the Cytokine cascade which in turn helps with the neuro symptoms. There are various herbal remedies that our LLMD recommended to us to stop the neurologic effects of lyme and it's co-infections. Once you can halt cytokine release you can get a better grip on treating the bacteria. Dedee

If you go to the pandasnetwork.org website and look under "resources" you will find a provider list by state. That may help you.

Does anyone know if there is a website or a list somewhere that gives the names of physicians who offer this type of care by state? I think it would be good if we had that available for those who are interested because even if you decide to persue this it is so hard to know which physicians are really helpful and credible in this field and which ones are bogus. Dedee

You may have to start with small steps until the big steps of getting him out of the house. Maybe you can do phone consults with Dr. T and get him started on antibiotics and possibly steroids and then when you get some improvement you may be able to get him out of state to a doctor for a more thorough exam. We had to start with antibiotic cream because my daughter would not swallow any sort of medications. It wasn't wonderful, but we got a compounding pharmacy to give zithromax in a compound cream that we used. It gave just enough help that she started to swallow small capsules and we started zith by mouth and then very gradually worked up. It was extremely slow but better than nothing. This has been going on a long time so reversal may take a while also. The good news is that we now have doctor's who will be able to help your son. There is hope. You just have to be stubborn and patient. Keep us updated on your progress. Dedee

I know this must be such an awful time for you. I'm just going to give you my opinion based on what I went through with my son several years back. Please understand, we were not experiencing anything to the extent you are going through. My oldest has denial as his primary source of coping. When I decided it was time to get counceling help for him he was very angry and wouldn't talk about it and said he wouldn't go. He was 15 at the time. We had to be very firm and tell him this is a parent decision not a decision that will be made by the child. We explained that God gave him parents so that when he was too young or too sick to be able to make the right choices for his life or his health we would be there to step in and make them for him. We told him no one loves him more than us and we would always make the best choices for him and whether he agreed or not he just had to trust our decision. No discussion. I would throw in that if doesn't come willingly that you would call an ambulance and have him taken to the hospital because again, this is the best thing for his health and his life. Keep emphasizing that there are times in your life that you are too sick to know what is best and that is why he has parents who love him and always want what is best for him. But very firmly and without waver, let him know that you intend to do your job as a parent which is to get him the help he needs. I would not offer this as an option and I would tell him what the date is you intend to go and make sure he understands that an ambulance ride is always an option. You are doing the right thing here. I know that you know that. Even if you do have to force him to go, you could very well be saving his life. You should not feel guilty about that. My son tried very hard to play my emotions. He didn't speak to me for a week. I kept very cool, almost detached, but I did keep saying that everything I do is because I love him and that nobody loves him as much as his parents or knows more about whats best for him. Our counselor said it was very important that teenagers understand that they are not in control of the decision and that actually makes it easier for them sometime. They can however decide how they will get there (by force or amicable). I truly hope things go well for you and that this treatment is helpful. I feel so bad for what your family is going through. Please keep us updated on your progress. Dedee

Welcome to the forum. You are in the right place. You need to come and join us in the PANS/PANDAS forum. Many of the folks there have kids with lyme and Mycoplasma. My daughter did not have the traditional acute onset. She is being treated for Mycoplasma / Lyme / Bartonella. She has been symptomatic since she was a toddler but it got extremely bad two years ago. That was when we got testing and started treatment. Biaxin will help but the best thing you can do is to find an LLMD (Lymd literate MD). These physicians are the only ones who truly know how to treat Lyme and the co-infections. My daughter did not start to improve until we started combination antibiotic therapy with the help of an LLMD. Most physicians really do not understand the complexities of Lyme and it's co-infections. If you come to the board many can offer you help and suggestions based on what area you live in for a physician. It is a wonderful, supportive group. This is a very hard road for families. Another suggestion is to get the book "Lyme Co Infections" by Bruhner. Our LLMD suggested we read it. It talks all about Mycoplasma and Bartonella. It is a wonderful book. We are using some of the supplements mentioned in the book and it has really helped. Hope to see you on the other board soon. Dedee

Do not listen to those doctor's. If the anti-DNASE is that high there is strep and most likely this is the problem. I can not believe they will not even give you an antibiotic to see if this will help your child. How crazy is that. PANDAS / PANS is a well researched, evidence based disease recognized my the NIMH and many other highly valued institutions. It is only the very closed minded that refuse to update themselves with the research. They would rather medicate children with psychotropic medications than try antibiotics. This is a ridiculous idea. You need to immediately find another doctor who will truly try to help you with this issue. The longer your child goes without antibiotics the more difficult it can be for him to get better. What area do you live in? You can get more information from the Pandasnetwork.org site. Please join us on the PANS / PANDAS group below. It is a great group of folks who support each other. You will learn so much. Best of luck with your son. Dedee

Funny! My dd told me once I was selfish and only cared about myself! Really????

Our LLMD. She is wonderful and fully understands antibiotics and how they work in combination for Mycoplasma and other infections.

My daughter used to run low grade fevers when her PANS flared the first time. She looked horrible back then. She was pale with dark circles under her eyes. She would run fever at various times of the day. Since she has been on antibiotics, she doesn't do that anymore. Also, her dark circles are gone. Dedee

Where is Dr. N located?