Suzan

dd9 has her igenex test back already that I have posted about (Band 41+ and IND bands 31 and 34 seeing LLMD next month) and now we are anxiously awaiting my result and my dd8's result. Hopefully it will come back this week. I am getting sicker and sicker as the month goes on and if it's not lyme I don't know what it could be. The symptoms are overwhelmingly suspicious of lyme. dd8, who has had an easier time with PANDAS than dd9 (emotionally anyway), her symptoms are hoarding, age regression and food restriction (for the most part) has all of a sudden started getting arm pain, leg and rib pain, heel pain, headaches and "green squares blocking her eyesight". Her staring seizures are back after being gone for a year (seeing her neurologist at the end of the month and I see seizure meds in our future again ). One thing that I have always noticed about her that I have not had an explanation for is that she can't get the time of day straight (breakfast, lunch, dinner, morning, evening, today, tomorrow, yesterday). I started wondering if this could be lyme after I realized that I can't remember what day it is anymore, pretty much ever. Why am I posting all this? I don't know, just anxious for our tests to come back and to get th the LLMD. I think I've been as patient as I can be and I'm starting to unravel. Susan

I was told to wait 4 weeks after an IVIG to get the Igenex test. My daughter showed positive to band 41 and IND to bands 31 and 34. Waiting to see the LLMD next month to hear how that all plays out. Susan

and conversely, I believe that if you were born with LD as I suspect my dd's were, you will be susceptible to get PANDAS for the same reason. Susan

Sure, I will email him and PM you when he responds! Probably the same questions I would have once I got closer to trying. This was his top pick book. Susan

My brother's friend (lyme patient) swears by this book - Healing Lyme - which outlines the core herbal treatment and treatments for co-infections. If I find out we have lyme, I'm going to try it out as support to abx. Susan

Wow, my dd's are being evaluated for lyme. My youngest dd has hemangiomia birthmarks. I am amazed that this is indicating that this could be a sign of lyme. I had never heard that before. Thank you for sharing. Susan

She works in the same office as Dr. Coribier. I'd say Dr. C is the more experienced doc but he is very busy and hard to get in to see. I would say she would also be a good resource especially if you are a knowledgable PANDAS parent and know what questions to ask and I'm sure she is learning quickly as there are a lot of pandas patients around here! Susan

My dd9 had a horrible case of them on her inner thigh. We did not do any treatment to get rid of them except steroid cream. I will say that when she went gluten free and started abx for undiagnosed strep, they went away completely within a month although she had bad marks from them for a long time. I always wondered if the doc was right and maybe it was not really molluscum but the dermatologist insisted on 2 occasions that this is what they were. She developed eczema at the same time. Her poor skin was a mess. Later my dd7 got it and she had a very mild case, only gets 1-2 at a time. I am so sorry your son is going through this! Susan

Very interesting product for more than one reason!

My dd7 has this too when her pandas acts up. She drinks lots of Ensure or Boost type products because she can still drink and usually scrambled eggs. Antibiotics normally will allow her to eat again. HUGS! Susan

Can you see one of the PANDAS docs to possibly get a longer term antibiotic prescription? Would you feel comfortable ordering abx from Canada on your own? HUGS and I am glad you have some meds and can see your son get better, it's a confirmation you are on the right path but just need the support!!! Susan

Hi, if I'm understanding correctly, lyme can also cause high CamK result. My dd9 has pandas and I'm pretty sure she's got lyme too. We see the LLMD in November. My dd gets low dose IVIG's and they only seem to last a month. She gets worsening leg pain after her IVIG and then her pandas symptoms are a lot better for about 3 weeks. I will ask all these questions about lyme and IVIG when we get to the lyme doc too. Susan

Thanks, that is a wonderful memory and good for me to know. My younger dd used to sit there so calmly and move her face from side to side. If I asked her what she was doing, she said if she moved that way she could feel God touching her face. I freaked me out but she really enjoyed it. I can't even imagine what she was experiencing. Now she does not remember it. I hope she does when she gets older. She used to talk about reincarnation and wanted to know all the details about how long it took to come back into your next life and how it all worked and was confused that I did not know the answers. I felt like she had a window into the after life. She used to have seizures and I always thought it was from that but maybe from the pandas too. My other daughter always wants to know why is she here and also wishes desperately she could know what it feels like to be someone else, a person, a dog, a bird. Thoughts that I feel happen to older people, not young kids. susan

Yes! My daughter talked about feeling like she was in a movie and that none of it was real. Also that maybe someone else was just dreaming all this up. My younger dd would cry about it sometimes. Susan

This is great, I'm really glad you had a good appt. I hope the treatment works wonders and not a lot of herxing. I look forward to hearing your progress and I feel we will be there in 1-2 months after we get in to the LLMD. Susan

No, it does not mean no pandas. There are many kids who do not mount high titers, even with documented strep. My two girls are two of them! Hang in there and if you believe that it looks like pandas, keep searching. Find another doctor, get the Cunningham test, whatever you can do. The whole titer thing really does make it complicated! Susan

I was just wondering the same thing about dd9 this week. She has PE 3 days a week now and they run too. Her gym teacher is really a high pressure kind of guy. I have decided to let it go for now but if I see that she is really struggling I will probably discuss with her doctor. Susan

No, we have not run this one yet. Shoot! I guess I'll wait to get to the lyme doc and see what she says and maybe we can get all the next tests run all at one time. Thanks,

dd9's Igenex test came back. Igenex considers it a negative test. I feel like of sick but I'm not sure why. IgG results, bands 31 and 34 were indeterminant. Band 41 was positive. IgM results - band 41 indeterminant She had an IVIG 25 days before the blood draw and she seems to be a low antibody responder. She has been on zithromax for about a year. What do you all think? I'm sending the results today to the LLMD doc and then we can get an appt. Susan

I don't know the answers but wanted to say I am so sorry this has happened with your son. Are you getting IVIG from Dr. C or Dr. O and what dosage? We are over due for an appt with Dr. O and are not on her schedule! susan

I am so sorry! I can't imagine not being close to my children to be able to help them but then again my girls are still little. Is she very far from you? I am glad to hear that over all she is doing well and having fun at college. I hope this illness is short lived and you guys get it undercontrol quickly. Susan

I just read that 5-htp reduces dopamine and it is calming too. Susan

Hi, My almost 8 yr old dd was (is) very much like this too. It was much worse in years past. She just could not keep her hands or feet to herself and she was always hanging on someone, touching them, holding hands, hugging very roughly, etc. She didn't have a close friend or any friends really who would come over until last year in the first grade she finally made 2 friends. She still has all these problems but they are better than they used to be and now in the 2nd grade she still has these 2 friends and they are very close. Going gluten free helped a lot with the impuslive behavior. Getting rid of her strep helped a lot too. I can always tell when she does not feel well, all these actions get worse. She has trouble keeping her mouth shut in class and I put this in the same category of not being able to control herself and not really being aware of what may be totally annoying to others. Your dd just may need more time to heal and get used to her new treatment, etc. I think it's good that you are watching the yeast because that probably plays a role in it all as well. I put it all in the pandas category for us and overall immune related symptoms. We see a Dan! doctor who has helpful things for us regarding diet and supplements so that could be a good way to go. I don't really know though, or have any good advice except to say that I know what you are going through when you see this happening with your daughter! Edit... in response to what peglem said too, my dd8 seems very immature for her age and has all along. She seems to be finally catching up though with her classmates and sister but still slowly.

Hmmmm, regarding the dopamine, I don't know if my dd has abnormal dopamine levels. It does make me wonder though if the l-theanine is causing her to be hyper aware of her surroundings like noise and weather and feeling anxiety and paranoia. Something to think about for sure. I'll do a trial and cut it out and see if it helps. It does calm her over all though so I don't know how that would fit in. I was attributing her symptoms to her overall issues that needed to be calmed rather than being caused by the thing I was using to calm. Susan