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Everything posted by Robinhubb

  1. 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
  2. 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!!
  3. 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❤️
  4. 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
  5. 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
  6. 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.
  7. 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.
  8. 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
  9. 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
  10. 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?
  11. 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
  12. 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.
  13. 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
  14. Hey,

     I saw your posts on the blog and i have some questions.. 

    We moved into an old house, had to fix a lot of things a lot. But about a year and a half into living hear, new carpet, paint ect, i started having panic attacks at work, followed by ocd-intrusive thoughts, and anxiety . It gor so out of hand i had numerous mri scans of brain quit my job and lost myself . My husband has put up with it all but i have become mean and just not in tune. Fast forward, the beggining of this summer my 13 y o daughter after being sick said she has nightmares and harm thoughts and after finding a journal in her room, has had them since around the time i developed them. She said she didnt want to say anything. We did find mold in thier bathroom in which we cleaned. Litterally no mold in wall but was in a closet that couldn't breathe when the bathroom steamed up. Does this sound like enviromental? Im so scared. Everyone says im ancious but for both of us to go through this it doesnt sit right with me.

    1. wisdom_seeker


      Especially as this began at a similar time for both you and your daughter, it sure sounds like your triggers are mold.  Well....ok....I'm only 99.9% sure.   Don't liisten to naysayers -- the anxiety is almost certainly the result, not the cause.

  15. How did you find a new doctor that would listen and did they want Cunningham panel everytime?
  16. Im really struggling. We saw a dr who is referring us to a rheumatologist. However we have been waiting forever form an appt. This is the longest wait ever. I asked my daughter if she noticed a diff on aleve, nac, and oregano. She said not much but i could tell a huge diff with aleve only. I took her off Nac because she got moody. Tonight she was like mom, i feel like im getting bad thoughts from the right side of my head. She said she shakes her head because she just wants it out. Said she wants her brain back. She also says she forgets things she is going to say and she gets so upset. She is nervous and figdety and gets mood swings like crazy. She wants to tell me everything bad or good and some of the harm thoughts make me cringe. What is this?
  17. What strength and brand of cbd oil? I used cbd isolate with no diff..sending back for broad spectrum.
  18. I have looked online and looked through the posts but dont see many. The one near me makes you write a letter then based on thst he decides if you are a good candidate. First appt 1200+... im trying to find an integrated dr..i found neurologist but he wants a referral but how do you get a referral if no doctor believes you. Im in tears everyday. This is rough. I have a ppo why would he need a referral?
  19. I wish i could trevel to see that dr. We are in texas. Paying 6000 in braces tomorrow for her.
  20. Not bombarded here just can use anything i can. Please any info is good info at this time. Dont know what doctor to go to next.
  21. Yes we just used a doctor thst didnt use my insurance...he just ran strep teiter thats it. Called my kid crazy and left. Im not totally against phych drugs but thats what drs immediately put her on because they dont know whats wrong. Frustrating!!!!! Ty so much. I know we will get thru but being in the storm is always rough
  22. After doctors appts, phych, and counselors I thought i had found a great pandas doctor. However when i called they told me I had to get a referral from the main doctor. However when i contacted the main doctor he said no. He said her teiters were normal and basically she has a mental problem in which he prescribed prozac. He said mental disorders are common in young girls. Says it was just a coincidence that she has been sick the same times the thoughts come and that since she doesnt have strep anymore that the thoughts should be gone. True she doesnt have strep, but she still has a nasty cough. There are several things thst I know have screwed her up, she had a flu vaxx last year in october, and she always gets strep. Im wondering now, is she just mental?? He asked her and her phyciatrist asked if she was abused, i just lost it. My husband and i are strict but never abused. Im trying to trust God in all of this but how does a young kid just become mental. Im so tired and scared. Sadly sometimes I hate hearing her thoughts and push her away. She has become very moody as well. I dont know what to do. I refuse to put her on prozac. Currently we are trying milk thistle, cbd oil, oregano oil, motrin and probiotics. What am o doing wrong? Advice needed!!
  23. So with my daughter. She has been taking oregano oil, and probiotic We got cbd oil today and since im having such a hard time finding a doc in houston, i have 10 days worth of penicillin. Should i try that as well. Im adding cbd oil and milk thistle tonight. Sorry for being so annoying. I know most of these threads are old and many people dont look at these anymore. Wish us luck! Shes becomming very clingy to me and her thoughts are brutal. Im doing everything known to man besides putting her on phyc drugs. I cant do that to my baby!!
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