momaine

I had wanted to wait until all my dd's labs were back but I'm tired of waiting and so I'll update again when those come in. Despite negative Igenex testing (but one positive and a couple IND on some lyme specific bands)Dr. J felt that their was significant evidence based on symptoms and exposure that my dd has lyme and bartonella. He ordered a host of tests to try to corroborate that and the results are not yet back. Before we began lyme treatement, my dd was back sliding after 4 HD IVIG. (she had HUGE improvement after the first one, more improvement after second one, and third and fourth, not so much) Every time we tried to take her off Augmentin, she would get worse in about two weeks time. Since beginning Lyme/co-infection treatment (added Minocyline and Tindamax to her Augmentin and Azith) she has begun improving again, fairly significantly. One week after beginning treatment, she broke out in a lyme rash that only lasted about ten minutes. Dr. J's office said it was from die off. We got photos of it and sent it to his office. Her symtpoms definitely wax and wane based on when she takes the Tindamax during the week. (two consecutive days per week) but the trend is very positive and I am so pleased. Dr. J felt that it was likely that the lyme came first and wreaked havoc on her immune system and the PADNAS came as a result of the lyme not being treated. The same year that dd symptoms began her pony became so lame that we eventually had him euthanized. (vet did not test for lyme despite my suggestion) and since then our other two horses and our dog have had lyme disease, so it is not a far stretch to think that we too are infected. Dd has had multiple negative Lyme Western blots but we did not test until she had had symptoms for several years. She is also one of those kids who does not make enough antibodies to fight off strep. Anyway, the plan at this point is to continue with lyme treatment and IVIG and see how it goes. Both of her dr's believe the treatments are complimentary. So glad I spent the money to see Dr. J. It was some of the best money I've ever spent. It feels so good to have someone on board who has seen it all. Love both of our docs! Really believe they are doing their best to get my dd back to 100%.

I just want to mention that if Dr. J feels confident that your child has lyme/co-infections based on symptoms and exposure, that he will treat despite the labs that you bring in. He will also do about a million more labs to try to confirm his diagnosis. I am so happy we went to him. I'm going to write and update on my dd now. I'd been waiting for labs to come back but I'm tired of waiting so I'll do another update when those come in.

My dd, PANDAS and now diagnosed with Lyme/Bartonella is on Azith, Augmentin, and now Minocycline, and Tindamax (week-ends only) She is also on Diflucan to prevent yeast. And a few other things..... So that is four antibiotics. As long as she has her probiotics and the Diflucan, she does okay, so far. It's only been a week (tomorrow) on the Minocycline and Tindamax.

Dr. Lee Fitzgibbons in Windham is fantstic.

Dr. B was fine with us seeing Dr. J. I called to tell them I was rethinking lyme and he suggested seeing Dr. J. I too, believe that he just wants to see our kids get well. When dd had her second ivig I asked him to guess how many she would need based on how she was doing and he said one or two more. Well, she had two more and was not where we hoped she would be so I think seeing Dr. J was the next logical step.

We saw a Lyme dr. today. If I understood him correctly, he believes (at least in our case) that the untreated Lyme infection likely lead to the start of the autoimmune disorder. We're waiting for more labs but he believes there is enough evidence to indicate that my dd has lyme/bartonella. I'll update more when I know more.

YAY! I got one night like that after IVIG number one. It wasn't until number 2 that she was able to sleep alone most nights. Best of luck for continued healing.

We did lyme and all co-infections. Lyme is a clinical diagnosis though and I'm not ruling it out until we've talked with Dr. J. Our 3 horses and our dog have been diagnosed with lyme and now that I'm learning more about lyme symptoms, I realize my dd has had a good sized handful of the symptoms, esp. just before the time that all this pandas crap started. (just not joint pain) Best of luck and I'll update the forum when I know more.

Michael Tampa, I have followed your story on the pandas forum for quite some time. I am so happy that you have found the cause of all your symptoms. Best wishes for your continued health!

Lyme mom, Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me. Thank you!!! I am learning a lot from this forum as members post about their Lyme treatment so we all get a lot out of this. Even though our lyme treatment is over i am still trying to improve the health of my kids so this does not come back. I learned about the probiotics and the detox liquid that we use from Wendy (sf mom) and elizabeth. My son was diagnosed with Lyme in June of 08 after developing bells palsy (half his face was paralyzed). An emergency room doctor diagnosed him with Lyme and his elisa test came back very positive (over 4) so there was no doubt. Apparently bells palsy in a child is almost always Lyme. He had Lyme for at least a year before this because he had complained of headaches, was sensitive to noise in the car and was more irritable than normal but my pediatrician dismissed my concerns that somethng was wrong. By the time he was diagnosed he was very ill and he needed a picc line for 5 weeks ( would have been longer but he accidentally pulled it out while sleeping). He also had bartonella although he never had a positive test for it. He responded to rifampin. He was on almost every combo of antibiotic over two years and two months. He was really doing poorly last April so dr jones introduced tindamax for the first time. It caused horrible herxing but it might be why he is now well. He stopped all antibiotics in sept and now takes tons of probiotics (at least ten 50 billion custom probiotic brand capsules) and half a cup of bentonite liquid a day (vitacost.com) plus low dose naltrexone. We haven't been that good about making him take the LdN either and he is still doing really well. He is playing in a rock band and playing basketball. The first month Off antibiotics i was very worried -as you can imagine-afraid he would relapse off the antibiotics but now I believe he is finally well. It has been almost four months off the drugs.I am so thankful that he is better.I am thankful to the two wonderful llmds who gave us our lives back. I will never take health for granted again. My son was never diagnosed with PANDAS although my relative was and that got me on this forum. My son's neurological symptoms were the palsy, some irritability and some cognitive problems doing school work math and Spanish. In answer to your question about how fast he saw significant improvement, he was doing great after six months and he was gluten free and dairy free. He slowly got worse after we reintroduced gluten and dairy but it was so hard to do that diet with a teenager. We tried so many things along the way-energetic testing, desensitizing him to gluten and dairy,etc. I could write a short book :-)! Dr jones told me in the beginning that he was very sick and that it would take about two years and he was right. If he had taken high doses of probiotics and done lots of detox he might have had a shorter treatment but we will never know. He took 4 billion strong probiotics a day and now he takes at least 500 billion. I think of the Lyme treatment as a wheel and each spoke is a different aspect of health that you need to check out and eventually you will get well. For my son the high emfs in his bed likely prolongued his treatment. Had I known about testing for emfs I would have done that from the beginning. When your child is so sick you need to try anything that might help and won't hurt. My other two kids had Lyme too as did I and we all are done with the treatment. In addition to what we are doing to heal our guts I have taken two of my kids for testing/treatment with a biofeedback machine called ondamed that can detect Lyme and other bugs. They also tried HBOT. I wanted to see if there was any lyme left and it looks like there isn't so I am hopeful. Feel free to pm me with any questions. It was a lot of work doling out meds for two years and traveling to new haven and seeing all the other practitioners we tried but it was worth it. I hate the name chronic Lyme becaus eitvsuggests you can't get rid of it and I don't believe that is true. Pamela Weintraub told me that she is well and this gave me hope during our long treatment. After what she went through with Lyme this was very encouraging to hear. Good luck! Thank you!

My dd is a patient of Dr. B. He does everything in his power to minimize those side effects, so I cannot believe that he would think they are beneficial in any way.

This is a great idea. I'll ask my pharmacy.

edited

Lyme mom, Thank you for hanging around this forum and helping those following a similar path. I am grateful for your input. what do you use for detox? (is this charcoal and where do you get it and does brand matter?) Do you consider your son completely healed, at this point? How long was he on antibiotics once he began lyme treatment and how long before he was considerably improved? HOw long did he suffer before diagnosis and was he diagnosed with PANDAS first? I've read here so long I should probably know, but I tend to skim stuff unless it seems like it pertains to me. Thank you!!!

I'm pretty sure I just recently read that people with Lyme disease can develope Autoimmune disease. I would think that Lyme Disease could be the underlying cause of many PANDAS kids immune disfunction. ??? Who knows, but it sure seems plausible to me.

Wonderful!

Does anyone have a hotel suggestion, reasonably priced, not too skanky.

You guys are great and have given me great confidence in my choice. I will keep you informed and take all the things you said into consideration. I have to call the hospital and have labs sent to him as well as call Dr. B's and have the Igenex sent to him as well as her files. Then I need to sit down and update my own files her. Thanks so much,.

I spent yesterday reading and trying to decide which lyme doctor to bring my dd to. She has PANDAS and has had 4 HD IVIG and while she has made GREAT strides and I am so very grateful for that, her healing seems to have stalled out. She probably improved 70% after the first one but we've struggled to maintain that improvement. It's been one thing or another...another sinus infection, the flu, and who knows. We had lyme testing done with Igenex in Oct. It says negative but there are lyme specific bands that are positive or IND. (I recently learned) So now, I'm investigating lyme. The year our pony came down with lyme (in hindsight, we had him put down) was the year that my dd's symptoms began. Since then, our other two horses and our dog have been diagnosed with Lyme disease. It's not a far stretch to think dd's problems could be a complication of chronic lyme. She is exhausted all the time and sleeps 15 hours a night frequently. (then I wake her up) She still reacts to every virus that goes around and just being exposed to strep sends her over the edge. I feel like we're missing a piece of the puzzle. In the end, I decided to take her to Dr. Jones. I pray it is the right decision. I'll take any thoughts or advice of what to bring. I'll get a copy of all her labs and bring those. I'll have Dr. B's office send her file.

Happy New Year right back at you! Thank you for being a valuable part of this forum and I pray that 2011 is the year of healing for us all!

Personally, I'd stick with the high dose Augmentin till 100% recovery.

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks. We use the same PANDAS doctor. In July, after my daughter's 3rd ivig, we received a positive Igenex western blot. She was placed on zith 250mg for the lyme. In Sept, we took her to Dr. J in Ct and he added Amox daily and Tindamax on the weekends. After some minor herxing (compared to many here) and some reactions to illness, she was doing pretty good by Halloween. Then we did another ivig and lost much of the improvement we've seen. After 4 weeks, things began to settle, until I took my daughter for a dental cleaning...by the time we got home she was flaired again. 19 days ago, we added Minocin to her daily regime and are now once again seeing improvements. So yes, we are working with both doctors. At this time, we are going to postpone further ivig's until later into treatment (if needed). Only, because, in our case it caused too much of a herx with her last infusion. Some are doing better treating with abx and ivig, some are not. Thanks so much. Its a difficult journey no matter how you look at it. Best of luck to you all.

Can each of you tell me who you see for a doctor and what drugs your children are on? Philamom, how long has your dd been being treated for lyme and who is your pandas doc. Are you all working with multiple doctors? How do I even begin to start this journey? I guess I'll call and talk to her pandas doc and see what he thinks.

Thank you both for your responses. I will certainly investigate this avenue and I suspect as usual, we'll be traveling to CT to find a doctor. Who would you recommend? I do know the other mom from Maine and I'll be waiting anxiously to hear what the doctor tells her. Although her son has more Undetermined bands than my daughter, their results are similar. Angela

Can you help me read these results. My dd's Igenex results read as follows: Lyme IGg Western Blot **31 kda IND **41 kda ++ 58 kda + IGm western Blot **39 IND **41 IND Now a bit of history. She has been being treated for PANDAS for one year. She has had 4 HDivig. She does well after ivig but twice has had subsequent sinus infections while on Azith. If she stays on Azith as well as Augmentin, she seems to continue to improve, but we're just figuring this out and don't know long term. She still reacts with PANDAS symptoms when she has a virus and even when she was on both antibiotics but was around someone (who was also on an antibiotic) who had a current sinus infection even though she did not get a sinus infection that time. (sent her into a downward spiral but she recovered after a week and another IVIG) The IGENex tests say negative but from what I'm reading that may not be the case??? Thanks for your help.