AmbersMommy

Hi, I have encountered a chiropractor who says that chiropractic adjustments help with treating Lyme. Has anyone ever heard of that before?

We see Dr. B. as well. My dd just had her 4th IVIG this past week. Each time she has had it there has been a little different response. The first time she really regressed to close to her worst state which was OCD behaviours, and basically acting autistic along with not sleeping by herself, not sleeping with her light out, not sleeping at all basically, and also not going to the bathroom by herself. Then about 6 weeks later she was better than she was prior to the IVIG. Each time she gets the IVIG at about 6 weeks she seems better than she was before she got it. It has been a really slow process. We did have one glitch. The time before this when she got IVIG she was doing fantastic 6 weeks afterwards. She was better than I have EVER seen her. Then, she was taken off of one of her antibiotics. Within 4 days she was regressing again. She also has Lyme and the doctor that was treating her Lyme took her off of the antibiotic. It was devastating. She never did make it back to where she was before she was taken off of the antibiotic. Now things are looking up though. She is having a worsening of her facial tick right now, and she showed some anxiety today about going to the bathroom by herself. However, she woke up at 4:00 AM because the birds were too loud and she went back to sleep!!! She almost never is able to go back to sleep once she wakes up no matter what time of night it is! I am so excited! She is also communicating better, and her short term memory seems better. Anyway, good luck to you!!!!! I hope this helps!

Chronic neurological lyme here as well.

Hi. My dd7 has PANDAS and Lyme. We have had three rounds of IVIG. Right after the IVIG her symptoms definintely increased. Actually after the last one we had new symptoms. The thing is that after about 5-6 weeks post IVIG each time she was better than she was initially. I am not saying that these gains were huge all at once. However, all the changes taken together have improved her life greatly!!! She just started back to school...only an hour a day, but it is progress as she hasn't been in since last May. We did and still do have a detox regemin in place. We added to this regemin several weeks ago and I noticed a positive difference in her. She is calmer. At one point on this forum someone posted that if the Lyme was being treated somewhat affectively then the IVIG is more effective. I don't know if that is true or not. Oh...FYI my daughter is on Azithromycin and Bactrim. When we added the Bactrim after she had been on Azith for several months she had a bad herx reaction, but after that cleared we could tell that the Bactrim was helping. My daughter was on low-dose steroids for 2 days pre-IVIG and 3 days post-IVIG. We also gave her Ibuprofen and Benadryl post IVIG for several days. After one IVIG I thought I would stop the benadryl and Ibuprofen a day early. Bad move....she got what I think was a migraine and threw up. The next time she had IVIG I kept on with the benadryl and Ibuprofen and she had no problem. Oh, here is a tid-bit of information. My neice had IVIG for an autoimmune response not related to PANDAS. She had no negative reaction whatsoever to it other than fixing the problem. Wouldn't that be nice? Good luck!!!!! I think if you do go ahead and have IVIG have a detox plan in place. Call the LLMD you are going to see and explain what is going on. Have them point you in the direction of appropriate detox. It seems that these things are supplements and not medications, so really he/she technically probably doesn't have to see you first like with a medication. Again...GOOD LUCK!

Contact Facebook!!! I know that they can remove videos that are deemed, "inappropriate". I'm not saying the video is inappropriate, what I am saying is that facebook has the capability of removing a video. It can't hurt to try. I am sorry this happened.

I know that it has a lot of antioxidants in it. Is theanin an antioxident? I also use decaf.

Just hold on! Tuesday isn't that far off!!!! A lot of people swear that giving Ibuprofen to their kids alleviates some of the symptoms of a flare-up. It probably wouldn't hurt to try it if you haven't already! I'm rooting for you!!! You are paving the way for our children who may have flare-ups as adults, so getting through this and telling all of us here how you did it will help a TON of people. Thank you!!!

I would bet it was a herx. My dd7 was diagnosed with PANDAS last July. She was then diagnosed with Lyme in August. She had been put on Azithromycin for the PANDAS. It helped somewhat with her symptoms, but it didn't make them go away completely. We went to a LLMD whose name I got off of the International Lyme Disease Assocation's website. He put her on Bactrim. All heck then broke loose!! The symptoms that had gone away came back full force. It was awful. The doctor assured me it was a herx. The fact that she was reacting like that meant that the medication was working and the Lyme was dying. It took at least 2 weeks...seems now it was almost a month before she was better..and she was better than she was before starting the Bactrim. If she has Lyme she has neurotoxins in her system. My dd's LLMD is having her take Glutathione as well as PEKANA Detox drops. to help clear out her system. I noticed a positive difference in her after a couple of days of taking each of the two which I started at different times. I also noticed that giving her a lot of green tea seems to help. She asks for it on her own now. I think she can tell it makes her feel better. She will drink 4 or more cups of it a day with honey in it. Ibuprofen lessens my daughter's symptoms as well!!! Ibuprofen was actually the first thing I found that helped her anxiety. It didn't fix it, but it did make a noticable difference and it helped her fall asleep. Good luck getting through the weekend!!!! Lisa

Her doctor took her off of the Bactrim because her WBC, leucocyte, and nutrophil counts were really low. He said that Bactrim was most likely the cause. Then he consulted with Dr. Jones and put her back on. Unfortunately she had been off of it for 2 weeks. There wasn't another antibiotic put in its place.

Hi, My dd was diagnosed with Lyme last August. She is on Bactrim and Azithromycin (for PANDAS). She was 5 weeks post IVIG and was a completely different child. It was wonderful. She had stamina. She didn't get confused when she spoke. She called things by their correct names. Then...bloodwork came back and the doctor treating her for Lyme said we had to take her off of the Bactrim. We did and within 4 days she was gone again. It has been a month now and she isn't back to where she was before. Has anyone ever had this experience?

Hi, My DD6 was on a GF diet and it helped her with her reflux. It also seemed to calm her down a bit so that she was able to stay on task a bit better. I noticed that whenever she would have ANY kind of starch including corn, rice, potato, etc. her stomach would bother her. I finally put her on something called the specific carbohydrate diet. Pretty much no complex carbs. With that not only did her reflux clear up pretty much altogether, but I noticed that her autistic like symptoms which I associate with PANDAS lessened dramatically. Anyway, thought I would mention this diet. It is rather extreme, but has been worth it.

Thank you!!!

Hi, It's about 9:20 AM. I got the link to work. I think in a nut-shell they are saying that strep doesn't cause exacerbations of tic/OC symptoms in children diagnosed with PANDAS. I hope I am wrong, but this is a very curious result if I have interpreted the abstract correctly. The full-text version costs $12.00. I may spring for a copy. If anyone else reads the full article or has a different interpretation of the results please post!! Thanks.

Vickie, My daughter doesn't complain about being at home. As a matter of fact she doesn't want to go out a lot of times. I have a 3 year old little girl as well and they have just begun to play together really nicely. My dd6 who has PANDAS has literally just started interacting with her over the past month. It is a wonderful thing to see. You are right about getting her out though. I need to make more of an effort. A drive sounds rather nice to me too. We did walk around the block before it started to get too cold out. Thanks for the input!

Hi, I feel like I am talking to a brick wall when I talk to my dd's teachers sometimes. It is very frustrating. Currently she is getting a tutor at home, but I plan on having her go back to school part time in January. They keep trying to get me to send her to school for an hour or so a day. I just absolutely do not want to send her right now. She is in kindergarten. I just want to have a nice Christmas. She is doing so very well right now and I want her and the rest of our family to enjoy it before she backslides. I am assuming that once she is exposed to strep, a virus, bacteria whatever that she will no doubt backslide. I have been basically keeping the poor kid a prisoner in the house most of the time. We did go to the movies, and she did go to one Daisy Scout Meeting last month. Her teachers are worried because she writes the letter e backwards. That just seems so absolutely trivial to me right now. I could care less if she can count, or read, or any of that stuff. There will be time for all of that. Right now I just want my little girl to be...as close to a normal little girl as possible for as long as I can keep her that way. I have a doctor's note to keep her out of school until January. I wish they would just stop pushing the issue. Sorry if I seem melancholy. This is all just so very hard.

Thank you to everyone on this forum. I don't know if my family could have survived without your comments and advice!!!

You know you are a PANDAS parent when a root canal is a break!

I think my daughter had Lyme before she had PANDAS. She was diagnosed with Lyme on August 20th of this year. The blood was drawn in July. The results of one of the tests indicated that she has had Lyme for over a year. We are seeing Dr. Moorecroft, a LLMD who is a member of the International Lyme And Associated Diseases Society...I think that is what they call it. Our first PANDAS exacerbation happened around Mother's Day 2010. She started hallucinating, auditory and visual, OCD behaviors, etc. She also had been diagnosed one week prior with Strep!!!! I really think that if she did not have Lyme, she would not have gotten PANDAS. I do, however believe in BOTH diagnoses!!! I think they are related in some way. What if Lyme completely wears down the immune system and then Strep, or a similar bacteria causes some type of horrid auto-immune response? I'm not saying that every child with PANDAS necessarily has Lyme. I can imagine there are many diseases that could infect our children and wear down their immune system to the point that a bacteria would push it over the edge. Just my thoughts. Very curious about what everyone else thinks.

My DD6 had night sweats for a few years when she was between 2 and 4 years old. She was diagnosed with PANDAS earlier this past summer. She was also diagnosed with LYME at the end of August. The testing indicated that she had Lyme for over a year. We brought her to a LLMD whose name I got from the International Lyme Disease Association. NIGHT SWEATS ARE A SYMPTOM OF LYME or one of the co-infections!!!! Get him tested ASAP because the earlier you catch it, the easier it will be to get rid of. The tests ordered from Quest often give you a false negative, 20% false negative according to my daughter's immunologist. Igenix labs is the lab that was recommended by my daugter's immunologist. Good Luck!!!

Hi, I want to try my daughter on valerian as well as the melatonin she is on because she keeps waking up at midnight and is up all night. She is 6 years old and about 48 lbs. Thanks to anyone that can help!

Hi, my daughter had OT, PT, and speech, and it really did very little if anything to help her as far as I could see. She has been getting all these since she was 3. She is 6 now. She has speech, and motor delays. We are treating her for PANDAS and Lyme right now. On a positive note, I don't think OT, PT, or speech therapy actually hurt her.

Muffins!!! I know this might take a little work on your part, but they are AWESOME!!!!!!! My whole family eats them! I can pack them for trips, and they are great snacks! Here is a recipe. 2 1/2 cups ground nuts (Almonds in a food processor) 1/4 cup melted butter or you can use a small amount of fruit juice or pure apple butter - add this last 1/2 cup honey 1/2 tsp baking soda 1/8 tsp salt 3 eggs Preheat oven to 375. Make sure you use cupcake liners! Bake for 15-20 minutes or until muffins spring back when pressed. These muffins get really dark when you cook them..probably because of the nuts. You can add 1/3 cup raisins before you cook. What I like best is to replace 1/2 cup of the nut flour with dried unsweetened coconut! I've also used 3/4 cup blueberries. If you want something you don't haveto cook or anything try Fruit Leather!! There are other brands. They are like fruit roll-ups, but they are completely natural/organic. I have found them in the organic section. You could throw a bunch of them in your locker at school.

Hi! I did the gluten free diet with my daughter for a year, and it helped her with some GI issues. Then, overnight she started hallucinating and was diagnosed with PANDAS shortly after that. Now we know she has Lyme as well. I changed her diet from the gluten free diet to the specific carbohydrate diet. I am not sure if the diet is what is helping her, or the antibiotics she is on, but I have a hunch it is both. I think anything that won't hurt is worth trying. My daughter gave me absolultely no trouble in putting her on the diet. I have an awesome recipe for raisin bread if you would like it!! We finish off a loaf in 2-3 days!!! Oh, I went on the specific carbohydrate diet with my daughter because I thought it would make it easier on her. My other daughter and my husband aren't strictly on it.

Wow, what a wealth of information you have now!!! You do realize that you are well on your way to getting appropriate treatment!!! I understand how angry you are. My dd had the same test for seizures, had EKGs, had all sorts of testing...and nobody was able to come up with a diagnosis until her symptoms went whammo and she started hallucinating. Then I got lucky and just happened to get an ER doctor who had heard of PANDAS... Then got to Dr. B. who knew that even though the first Lyme test was negative we needed to get a better test which turned out to be positive. Get MAD, then get even by getting better and then let all the health professionals you saw what the problem was really...educate them so that maybe they will be able to recognize the symptoms and associate them with Lyme and/or PANDAS the next time some poor kid comes into their office with them. I am going to write letters to the ER doctors that saw my daughter as well as any other specialist that she saw once I get further resolution of her symptoms. Kudos for your perseverance! Ever thought of becoming a doctor? You keep fighting for yourself!!!!! You are doing a wonderful job!!!!!!!!

Thank you everyone. The first thing I did this morning after feeding my kids and giving the diabetic cat her shot was to log on and read this forum. I was so hoping there would be at least one reply. Thank you, thank you, thank you. I really needed and still need the support. I have a little more steam thanks to you all! Now I have to try and track down some results from Quest on the possible co-infections to Lyme. We haven't started to see a LLMD yet. I am going to start with her pediatrician and see how much experience she has with treating Lyme. The Azithromycin has helped some of the Lyme symptoms...I think. Can't really sort out what is a Lyme symptom and what is a PANDAS symptom. The antibiotics are helping though. My daughter's weird walking thing is that she stomps sometimes, and sometimes she just walks one way, turns around walks back and continues doing that for a little while. I have thought about postponing the IVIG because my husband is going to be out of town. I am still thinking about it. It seems like a heavy decision to make because the physicians don't even know how it works, so consequently who knows what postponing will do to her prognosis..help it?, hurt it?. I am going to call my mom and see if we can fly her in for the week. It should have dawned on me before to try and do this, but my brain is a little addled. Thanks for clearing up my brain a bit!!! Good luck to all of you, and thank you again for all of your support! It is soooo very much appreciated. We should have a get together sometime in the future...perhaps when this is all more of a memory than a terrible struggle. Vegas anyone???