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Posts posted by Robinhubb

  1. On 3/31/2020 at 7:54 AM, C_deangelis said:

    Hi there! I’m 25 now but was diagnosed at 7. I had intrusive sexual thoughts, thoughts of hurting others (these were rare and mainly about the people who took my blood because I was entered into a testing program since PANDAS was new-ish), intrusive thoughts about my parents dying (I think this is where a lot of the separation anxiety comes from for PANDAS kids because I was afraid

    to say the stuff out-loud in case it came true, I didn’t want them to get hurt I was afraid of losing them every moment of everyday), intrusive thoughts about really bad things happening to my dog (I remember fighting an OCD urge to make a symmetrical mark on my

    paper in first grade and suddenly I heard a yelp (I had hallucinations as well) and my brain kept telling me she was dead, intrusive thoughts about people coming to hurt

    me or take me away in the night. 

    If you have any other questions I’d be happy to answer any of them. And if it helps at all, I’m a functioning adult (I work in an OR and i’m pursuing being a physicians assistant). I know it’s terrifying but I promise you, you and your kiddo are strong and will make it through this ❤️

    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.



  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. On 1/19/2020 at 12:46 AM, wisdom_seeker said:

    Oh do I understand the stuck and pissed, and $$$ stressed and tired.
    If you want to talk over what you've already done and seen, and brainstorm, give me a call.  I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources.  And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway"  and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps".

    So if I can help with the detective work, I will.
    Where are you located?

    PS. I'm a night owl on PST, in the SF Bay Area.

    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. 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

  9. 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?

  10. 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. 

  11. 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

  12. 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? 

  13. 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?

  14. 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

  15. 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!!

  16. 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!!

  17. 26 minutes ago, ejh said:

    Bloodwork being normal is not unusual as far as I know. And does not mean that it is not an immune problem. Have you talked to a PANS/PANDAS specialist?

    There is only 1 near me, he wants you to write him a reccomendation letter on why he should take you and 1st appt is over 1000 if he thinks your a good candidate.  Im waiting to here froma nuerologist in katy . Dr doan. 

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