Robinhubb

My 15 year old daughter has all of this. She was given 6 rounds of Ivig with no improvement. She is also being tested for myco plasma phenomena and lymes. We are on a wheat free gluten free dairy free diet and she still is suffering so much with her thoughts. Any help would be appreciated. thanks

So it’s been a while since I have been on. In February after coming home from my daughters Ivig treatment in San Antonio, I had been intermittent fasting , but also had my first appt with the neurologist there whom told me I was dealing with pans pandas too and Lyme just like my daughter and son. First I started feeling dizzy went to er and they did a cat scan of neck and brain but all clear. Blood work normal. So when we got home I had been fighting a cold drinking tons of cistus tea. I noticed a little bump under arm and it’s all went downhill from there. Some of the issues I have from pans pandas is having anxiety related to thinking something is wrong. So I immiedialty went to doctor 2 days later in which the bump was gone as I had already thought I had lymphoma. My OB sent me for mammogram and ultrasound in which ultrasound of lymphnodes were normal but my mammogram was not . So a biopsy and blood work showed benigh tissue and normal blood work. Then I get even more paranoid thinking I need to see an ent. So seeing her they discovered I have 3 nodules on my enlarged thyroid but numbers looked fine. I also asked for ct of chest because I had started having these weird night sweats in which they occur more often during my cycle. Ct was clear. I ended up in er yesterday with stomach pain and ultrasound showed normal. I am all over the place some days feeling dizzy, tired, night sweats that come and go, weight gain. I haven’t been treated yet as I can only afford top priority first. Maybe it’s the rental we are staying in that has mold in windows as we finally will close on house Friday. My reg doctor says I’m fine, I am so scared I have cancer, or something else is wrong. I hate what pans pandas does to the mind. also does anyone know if pans pandas in adults causes any night sweats, fatigue, weight gain, dizziness?? I workout everyday hardcore lift weights, I’m just lost!!

So we have had a long road and rough road. if you go back to our stories, my daughter has gone through doctors and finally been stable with her doctor for almost 6 months. IVIG for 4 months. Her dr paid for my daughters Lyme test and it came back positive. her intrusive thoughts are worse than ever. We have an appt with a holistic lymes dr but all of this is non affordable. My son also has this and so so I. Any advice? I have been looking Into the buhner method and I’m just all over the place! I pray for all of you out there struggling and thanks for all prayers for us as well❤️

My daughter 15 is getting the monthly 3 day course of IVIG and she just left 3rd treatment. I hear how kids feel immediate results, but she is still struggling and sometimes after symptoms are worse. I have been told it may take literally 6 treatments before I know if it’s working but doctor is doing lymes test next. so confused and discouraged

My daughter 15 is getting the monthly 3 day course of IVIG and she just left 3rd treatment. I hear how kids feel immediate results, but she is still struggling and sometimes after symptoms are worse. I have been told it may take literally 6 treatments before I know if it’s working but doctor is doing lymes test next. so confused and discouraged

Had house tested bad Theron had moisture. Cleaned it up, and the ac vents tested positive for aspergillosis. So we had all new duct work and a halo put in. It’s basically an ozone mold and bacteria killer. Still dealing with this.

I’m just seeing this. I’m a night owl most nights too as my kids harm thoughts keep me up. So I’m in the Houston area. Frustrated to say the least. Cholestramine hasn’t done much. Now homeschooling and even I myself am having bad dreams of her hurting herself .. because it’s what I fear. I’m mad because bobs keeps denying IVIG. Any help would be great.

We are a I’ll in the midst of finding the issue. Nothing visible but def something hiding. I’m pissed. Want to leave our house all together. We are broke and tired!!!! Thanks for the help

So I just got a whole bunch of labs back and my kids and I all have might myco p and our levels of tons of molds were tested as well and the worst one which is Stachybotrys chart arum im frustrated!! Glad we have answers but do we move? What do we do? We can’t afford to move or be sick.. any advice

I need some help. Some direction. So after seeing the new doctor in October and trying azithromycin, which didn’t bring mycoplasma levels down even a smidge after 3 weeks, he switched her to a antibacterial and augmentin. She took it for 21 days and I had her doing Epson baths, probiotics, vit c and watching diet and it only seems like it’s worse. The doctor did put in a order for IVIG and tonight the company called us to let us know bcbs denied it.. I’m so upset the biggest concerns are her hyperactivity because she is scared, her intrusive thoughts, and her ocd in general. Brushing teeth takes about 10 min. She also gets scared about thoughts and throws up a lot any advice on what to tell the dr or ask?

Do u know what probiotic they used? My doc has us on bactrim...and after reading Dr. Garth nicholson's treatment looks like that is not a good treatment and the past 14 days have been worse since on bactrim

Since DD has been diag myco p pans, they started her on bactrim 2x a day for 14 days then 14 off and so on ... she is just upset that it is not going away. I have a strict schedule for medicines so o follow protocal to a T!! Im thinking too, that she should have had more testing for strep side and other stuff. Just to be in the clear but she wasnt.. The doctor mostly tested lyme and myco p. Then the day before scheduled treatment, my daughter got another virus. This is all too much if i could take her thoughts away i would.

Good morning I hope all my pans/pandas peeps are ok... Finally got my girl seen by a doctor who initially thought lymes but when getting blood work back it was neg for lyme but showed mycoplasma igg over 5 and igm over 4100. Doctor wants her on bactrim but making her get on tons of probiotics first. I think more testing should be done because she didnt look deep into other blood work..but i am relieved to finally see something thats actually there not just a crazy kid. Any insight would be great. She starts school monday and she wanted to start antibiotics already but doctor wants her body prepared for the long haul

How did you find a new doctor that would listen and did they want Cunningham panel everytime?