momaine

My dd had a facial motor tic that emerged when we first discovered PANDAS and came back when we started Lyme/Bart treatment, but is not gone again. It never came back as strongly as it was initially before we started antibiotics for PANDAS, but it was definitely appearing now and then during herxes. Motor and vocal tics were definitely second to OCD as far as symptoms went.

My dd who has PANDAS (or maybe Pitand) also has Lyme and Bartonella. I too, have found out I have Lyme and Bartonella. Before treatment both my dd and I were more fatigued than the typical person, but since starting Lyme treatment, we are both MUCH MORE fatigued. It's horrible really. Slept 9 hours last night. Got up and made Lasagna and took my dd to the orthodontist. (had to wake her up ten minuted before so she slept 12 hours) When we got home, we both slept on the couch, on and off most of the rest of the day, till the middle of the afternoon when she went to the barn to much stalls with her friend. The only time I left the couch today was to visit with someone who came over for a swim in our pool and to put the lasagna in the over for supper. We both slept several more hours on the couch today and I am still fagitued despite all that sleep. Just telling you this story so that if you haven't ruled out Lyme, you might want to think about it.

Hi, My dd is a bit of a complicated case with PANDAS and Lyme/Bartonella infections. But when she had her first ivig (we didn't know about the lyme/bart then), she showed improvement overnight with mood and attention level but it took a couple of weeks to see an improvement in OCD. Then after two weeks and moving forward, she continued to improve in that 8 week period. (gets complicated after that but that should be enough infor for now) Best of luck to you. My dd was never on Penecillian and she did not do well when she went off Zithromax and Augmentin. Now we know that was probably due to lyme. Our immunologist's nurse recently said something that made me thing a large percentage of her pandas kids are showing up positive for lyme.

Try to remember that most people are just trying to help even if it doesn't come across that way. I would just tell them that you are researching many leads and trying to figure out where it would be best to spend your money. That said, I'd go to someone who has treated someone with PANDAS before. Not worth the waste of time nor money to have to teach them as you go. Been there, done that.

Karen, I was overwhelmed when I fianlly figured out my dd also had Lyme/Bart in addition to PANDAS. I had spent the previous year and a half learning all I could about PANDAS and finding the right doctors and making difficult decisions.(antibiotics, prednisone, ivig, etc) I just didn't want to learn anything else! and there is a lot to learn with Lyme and Bart. It's another field that is controversial and navigating treatment options can be challenging. That said, I do feel like we are finally on the right path. I feel like I have two great doctors who both want my child to be back to 100% as much as I do. I feel like they both have the experience and knowledge to keep her moving forward and I feel like they are both open minded enough that if something is not working, they will change tactics and figure out something else. I haven't posted much for updates on my dd because I still don't know how this will all end, but I'm finally feeling more hopeful again. My dd started Lyme/Bart treatment at the beginning of February. Unfortunately for her, the initial bout of herxing after the first month of improvement, lasted till week 16. (she just had her third ivig since starting lyme treatment but it was her 7th overall) Her improvement followed two weeks after her second ivig after starting lyme treatment. We do a lot of stuff for detox in addition to the lyme/bart treatment. The first thing to resolve happened in the first month and that was that her constant sinus drainage stopped. She had struggled with this since the PANDAS diagnosis and even with allergy meds, 2 sinus rinses per day, and daily Musinex, she had constant drainage down her throat. That has not returned since one month into treatment. She still takes allergy meds, (haven't wanted to make that change yet) but doesn't need Musinex or sinus rinses. Weeks 4-16 were very difficult wrt OCD. (her worst symptom) It was definitely taking a step backward for her, though she had been going backwards for several weeks before starting Lyme treatment anyway. She had periods of motor tics again in the first few weeks of treatment too. (not a big deal to us compared to the OCD) In the last 9 weeks, she improved moderately. She's still WAY better than she was when we started this journey, but never as good as she was after 2nd IVIG when we thought she had only PANDAS. Our doctors have told us that with Lyme/bart/pandas, its more of a slow steady recovery, rather than an overnight change. She is quite functional and moderately happy most of the day. Difficulties arise in the last few hours before sleep and she is T-I-R-E-D of struggling with OCD. In this last 6-7 weeks, she has been able shower and dress daily independently for the first time in almost 2 years. Sometimes I'm as frustrated as ever and can't see the forest for the trees, but when I can take a step back and take my emotions out of her daily struggles, I can see that she has made solid gains since starting lyme treatment after stalling out treating only for PANDAS. It was not without a very difficult start and it is not without bumps in the road, but it is definitely forward progress. Hang in there. You will get there too. (knocking on wood, in the hopes of not jinxing us)

<<<momaine- Isn't it the opposite--Doxy is stronger than Minocycline (Minocin)?>>> That isn't my understanding. I'm not sure what to google to research that. Not feeling very well tonight....in a hotel in CT.

My dd is on Minocycline 50mg for Lyme/Bart. She has had no problems with it other than herxing. I tried it for my Bart/Lyme (400mg) and I was sick to my stomach two or three days after starting it. I also had many other herx symptoms, like increased joint and nerve pain, fatigue. My dr. thought it was a reaction to the Minocycline and put me back on Doxy, but since I've had the exact same herx symptoms from Flagyl, I'm thinking it was all a herx, including the stomach ache. (nausea is a symtpoms of herxes listed on Drjoneskids.com) I think it is stronger than the Doxy and that is why I herxed more on Minocycline. I hope to try to switch back to it after my next dr. visit in August. I'll talk to her about starting on it more slowly.

It sounds normal for a herx. Have you started Lyme treatment yet Wilma?

I think I have read that, but I'm not sure. I took it for two days and on the day following my last dose, I got a stomach ache that lasted several days. I also had extremem fatigue and lots of nerve pain. Not sure if the stomach ache was part of a herx (not typical, I'm told) or what. I ended up having to go off all meds for 24 hours to get my stomach right again. Now I'm adding the drugs back in one at a time again. I hate this....argggg..

Thinking of you Wilma and wishing you and your dd the best of luck.

My test results were negative but I'm being treated based on symtoms and exposure. I know we are on the right track based on how I felt after starting each antibiotic. After starting Doxy, my heels and ankles felt much better. After starting Rifampin, MUCH worse again. Adding in Flagyl, they are better again. It wouldn't be so obvious a change when starting the different antibiotics if it had nothing to do with Lyme and Bartonella. My brain was the first thing to clear up. I can think straight again and my head doesn't feel all foggy all the time.

Wilma, I think you said Dr. Jones said he feels your child doesn't have PANDAS, right? I'm not sure if she would be a candidate for IVIG if there is nothing autoimmune going on. Does she have an elevated C3d or anything else that makes you think there is an autoimmune reaction going on? My dd has had a total of 6 high dose IVIG with Dr. B. It wasn't until after the 4th one that we realized she also had LYme/bartonella. Both Dr. J and Dr. B feel that in my dd's case that IVIG is beneficial. (as do I from how it has affected her) I really think each case is individual and you have to put some trust in the doctors you have chosen. I still double check everything and read all I can about everyone else's kids and ask questions and make suggestions, if I feel they are needed, but I have to trust them on some level or I'd go crazy. Have you seen a LLMD for yourself yet?

My ankles and heels are the worst, but my elbows, hands, and sometimes knees bother me.

My dd with PANDAS/Lyme/Bartonella twitches constantly at night. It was on the list of Lyme symptoms. I think its neurological.

lucky you! I have ankle pain from bartonella and it is no fun at all. Some days are better than others.

Wilma, My dd is being treated for Lyme and Bartonella too. The first month of treatment she showed improvements. (enjoy them while you can) I hate to make you worry more, but I want you to be prepared for possible worsenning. One month into treatment my dd worsened considerably. I believe it has to do with the cylcic nature of the disease and her inability to detoxify quickly enough. (we upped detox at that time) It felt like a never ending herx and there was no remitting until two weeks after her second IVIG after beginning Lyme treatment. It was 16 weeks after beginning Lyme treatment that we saw additional improvement. We also upped psych meds in that time frame, but not until after I saw some improvements. I feel that for my daughter, the psych meds help (Celexa) but I also feel like she is improving, FINALLY! When you have had LYme/Bart for a long time, it takes a long time to get well. Obviously, some kids improve more quickly than others and I pray that your dd is one of the lucky ones. You just have to know you are in great hands with Dr. J and he will do all he can to get your dd well.

Wilma, I'm no expert but I think an elevated C3d shows that an autoimmune process may be going on. I know my dd had other test too that the doctor thought indicated autoimmunity (well, the cunningham test too, I think) as well, but I'm not sure off the top of my head what they were.

Interestingly, my PANDAS/LYME/BARTONELLA diagnosed dd also struggled with plantar warts for several years around the time of her initial infection with these diseases. Nothing we tried helped but eventually they went away on their own. Last time I looked she had what appeared to be regular warts on her legs. I'd guess its because of immune disfunction that she can't seem to get rid of them. Hmmm....

I'm on Doxycycline for positive Mycoplasma, as well as Lyme. Two birds with one stone. Not sure kids can take it though.

But sometimes it seems like it last forever, so be prepared! You are in good hands with Dr. J. Does your dd have autoimmune markers that are elevated?

You need a probiotic as well to restore the good flora to your gut. This just helps with yeast in the gut, from what I understand. It also does not prevent vaginal yeast. Diflucan does, if you need it. Sugar feeds yeast, so you want to avoid it if you can. Neither my LLMD or my dd's LLMD or our pharmacist mentioned that you could not take it with antibiotics, so I think its fine. I hope so because I take it with mine.

I'm an adult and I'm pretty sure my dose is 300mg twice per day.

We are also in Central Maine. I have really felt like we were the only one in the area that has ever dealt with this! It's nice to know my son is not the only one in the Bangor area. If I knew how to private message on this forum I would send you a message. LOL Thanks for all the helpful advice everyone. I started journaling my son's history and realized there is a good chance that he has had this for over a year as he was showing the same signs last year except for the severe head tic. We lasted a couple of weeks without any symptoms and this past Friday he has started a facial tic, throat clearing, and oh my extremely moody/obsessive and pacing. Looks like we might have to head back to the doctor on Monday. I have started making calls to find a doctor for him for the PANDAS. I realize that this is going to be a long process, but I would like to get it atleast moving now. Has anyone read the "Saving Sammy" book? If you click on someone's name, I think it brings you to a page with the option to send a private message. Yes, I've read Saving Sammy. It was that book that made me feel sure, at the time, that we were dealing with PANDAS because our stories were so much alike.(but it may have been PITANDS (lyme/bart) all along or at least began with Lyme/Bartonella and progressed to PANDAS- there is definitely an autoimmune aspect to it) Unfortunately for us, antibiotics weren't the miracle they were for Sammy. They helped for a time but then stopped helping. Likely because we were not treating the Lyme correctly. We do IVIG every 8 weeks and now she is on Lyme/Bartonella treatment as well. We're hoping this is the last piece of the puzzle. I'm less willing to state publically that we've figured it all out because its been a very long road and my perspective has changed a time or two already. Best of luck to you. It's not an easy road. Get him back on antibiotics as soon as you can and try to keep him on them as long as possible. (beg, steal, or borrow, if the help him)

Hi from another Maine mom. We see Dr. B in CT for my dd who has PANDAS. It's about a six hour drive for us from central Maine. A year or more after her PANDAS diganosis, we figured out she has Chronic Lyme Disease and I would VERY STRONGLY recommend you see a Lyme Literate MD to rule out Lyme Disease as a cause of all of your sons symptoms. Esp. before you ever do a steroid burst. My dd sees Dr. J for Lyme who is also in CT and who works with Dr. B. I also have a lyme diagnosis and I see a dr. in MA who I like very much and who is much closer. I'd be happy to send you more information if you want to write to me privately.

My dd is also on Minocin and has not had any problems with IVIG other than typical side effects, which are usually minimal.