lw47

Hi, my daughter has also struggled with PANS/ PANDAS and her mycoplasma titers have been elevated this year as well. She never tested positive for Lyme until she had a recent test through our LLMD, who has treated her in the past even though she just had indeterminate test results. She has also been treated effectively a few years ago with IVIG from a PANDAS specialist. It helped, but symptoms came back, and she was showing more fatigue and aching muscles the past year. My hunch was this is Lyme. So she saw the Lyme doctor again recently and she recommended this time that she get a urine Lyme test through DNA connections. It came back positive for Lyme, Bartonella , and Erlichia. I am so glad she had that test, and we could stop wondering whether Lyme was a factor or not. I’m frustrated that past diagnostic tests for Lyme weren’t positive and thus she continued to suffer. She is currently being treated for Lyme again, and Bartonella and Mycoplasma. There are new regimens the LLMDs are using for persistent/ chronic Lyme, including Disuliram, which is still experimental but showing promise, and a combination of Dapsone along with other antibiotics such as minocycline and rifampin. None of these approaches are easy, but they are reports of people getting better after 3 months with Disulfiram, and a few months or more of Dapsone protocols. I STRONGLY recommend you get the Lyme panel DNA Connexions test. It is not cheap- 650 dollars, but you don’t need a doctor’s order- you go online and pay and they will mail you the kit. There are too many people walking around with Lyme that are undiagnosed. Lyme can manifest as predominantly neuropsychiatric symptoms in children as well. I don’t work for the company I’m just a mom that has dealt with this was for too long, and now I think there may be hope for kids and adults with Lyme Your doctor- even some PANDAS docs and most PCPS- won’t even be aware of this test Good luck!

Can you tell me the name of the immunologist please? I have a friend that has a daughter that may need plasmapheresis. Thanks!

http://www.iflscience.com/brain/brain-receptor-responsible-ocd-identified/

Dr. K in Chicago would be the best person close to your location.

I am right there with you. This feels like it is never going to end. My daughter is 11. She's had problems since age 4. Her second IVIG was last year, and we had 3 good months where the compulsions went away, though still some obsessive thoughts, but much better. Then it all came back. She does well in school, and doesn't have any tics or tantrums, but OCD is present despite treatment. I am holding out hope that puberty/ age will help lessen this, and eventually it will all be gone. I wonder if your child has Bartonella, and that's why things worsened when the Bactrim was stopped? Mine used to take that- had Lyme and Bart, along with strep causing PANS/PANDAS. I keep reading things about how many grow out of this when older, as long as you've done the appropriate treatments, which we have. My thoughts are with you!

Dr. Tanya Murphy

I think you may want to consider proceeding with more Lyme treatment. My daughter has PANDAS, and she had IVIG a few years ago that didn't help. She had testing results similar to your child, so we had her treated for 2 years with a LLMD. She did better, but then PANS still persisted so she had IVIG again last fall. Her compulsions went away for 3 months, then came back. So I think the IVIG worked for a bit becuase Lyme and Bartonella were treated. At this point it is the autoimmune part, not Lyme or a recent strep infection, causing her remaining symptoms. If we hadn't treated her for Lyme, I don't think she would be as high functioning as she is. She had INDs at 39 and positive 41 like yours, I believe. She was getting fatigued and had sound and light sensory issues and back pain. I agree, it is confusing, and treatment results are not always 100 percent, but you have to follow your gut and listen. 4.5 months of abx would not really treat undiagnosed Lyme. Good luck.

This is a very bad study. 12 weeks of antibiotics does not constitute long term treatment for someone with Lyme disease for years. I had Lyme disease undiagnosed for 9 years, and was treated by a LLMD for 4 years with excellent improvement. I am off antibiotics now and doing well. 12 weeks of antibiotics is nothing for someone with chronic Lyme. Infectious disease doctors are some of the worst for posting studies nay saying treatment of chronic Lyme. There is hope. I am proof of it.

My daughter had IVIG TWICE- the first time insurance didn't pay, but the second time her IgG levels were low, so she had CVID- immunodeficiency- so insurance approved treatment. She was good for 3 months, then it all came back.

Maybe- I would to to pediatrician first and get strep test, plus ASO Titers. If positive find a pandas specialist. If negative, would still consider a consult with pandas specialist, as sounds suspicious.

I'm in TN and there are no LLMD's here. My daughter and I both had Lyme. There is Dr. Lentz in Indy, and Dr. Crist in MO. They are the closest. Dr. Jemsek is in D.C. They are all good Lyme docs.

At this point, you most likely need to see a PANDAS expert for potentially long term antibiotics and IVIG. Dr. L in D.C. or Dr.K in Chicago. Just google those and PANDAS and it will pop up. They both do IVIG. The more episodes, the harder to treat with just antibiotics. Same thing happened with my daughter, who is now 10. She just had second IVIG. Good luck.

I am not in your area, but Marty Ross is good.

I am convinced your daughter has PANDAS. She has some of the same symptoms as mine - especially the thoughts and washing, and anxiety. She needs to be on antibiotics to prevent strep, and you need to get her in to see a PANDAS specialist. My daughter used to respond to antibiotics, but stopped and needed IVIG recently. Go see Dr. K in Chicago, or Dr.L in DC. Dr. K does phone consults first if you're out of town. Do not waste your time with naysayers. She needs a specialist. Good luck! It can get better with treatment.

I think you should go see Dr. L in D.C. - she is a PANDAS dr and pediatric neurologist

It sounds suspicious for PANDAS with symptoms getting worse after Strep infection. You may want to consider consulting with Dr. K in Chicago for PANDAS, or some people see Dr. L in D.C. Also, your son probably needs a minimum of at least an antibiotic right now until appt, to see if he gets better - they like Augmentin or sometimes Azithromycin.

She was treated for bartonella and Babesia also. She has been seeing the Lyme specialist for almost 3 years. I think at this point, it's the autoimmune problem, and she's not moving on the antibiotics any more. Of course, she is still on them for strep prevention at this point. I am hoping she will respond to IVIG this time. Other infections have been checked for too, and those labs are negative.

My daughter is 10 and has PANDAS/PANS. She was treated by a Lyme specialist, though labs weren't completely positive, as I had Lyme undiagnosed when I delivered her. She has also had elevated ASO titers, so we believe she has both. She didn't respond to the steroid burst, however. The Lyme doc feels Lyme is treated, and her OCD issues are strep related at this point, so we are with a PANDAS specialist. Anyone ever had IVIG work even thought their child didn't respond to steroid burst??? Doc says it's 50-50 at best that it will work.