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lw47

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    lw47 got a reaction from Robinhubb in Mycoplasma results   
    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!
     
  2. Like
    lw47 reacted to daymerelf in Physician Recommendations in/near Southeast MI (PLEASE)   
    My son is 5. He has been having a combination of tics and OCD-like behaviors escalating since April. He has recently been having a lot of emotional lability and has been very needy to the point of wanting help with most activities of daily living. I am no stranger to autoimmune diseases, as I have Multiple Sclerosis. Red flags are going off, making me think we might be dealing with PANDAS/PANS. My husband and I are trying so hard to be compassionate and understanding with my son, but sometimes his current behavior is very disruptive. It is hard not to feel angry sometimes...Watching him go through this sudden change in personality and behavior is breaking my heart. I am a physician, but no longer practice, due to my MS. I have never seen anything like what is happening to my son. I feel roadblocked, as it is clear that there are not a lot of docs with expertise in this illness. Please PM me, if you are in Southeast MI and have the name of a good provider to help rule this in or out and possibly initiate treatment. Thank you so much.
  3. Like
    lw47 got a reaction from BeeRae22 in Flaring again...thought I was done here   
    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!
  4. Like
    lw47 reacted to MomWithOCDSon in Flaring again...thought I was done here   
    Yes, Beerae, it WILL be over, one day. It truly will. Never fast enough, or solidly enough for any of us, but it will. And then it'll take you a while to realize . . . to BELIEVE . . . that it actually is over at that point!
     
    I don't know if it's because our kids' bodies, minds and immune systems are still maturing, I don't know if it's because they're constantly subject to new assaults by various microbes, allergens, etc., or if hormones tied to impending or full-scale puberty are a factor, but I do believe your DD will come out the other side of this. Unfortunately, for us, ages 12 - 13 were particularly rough, and then, slowly but surely, each year thereafter got better and better with respect to DS's ability to weather the storms, bounce back after a fresh strep exposure, etc. By 16, he was pretty much 100% on the other (good) side, but even then, PTSD had us walking on eggshells at times.
     
    Hang in there, and hang onto the knowledge that you're doing all the right things, and you'll make it through. Our kids are more resilient than we give them credit for, sometimes . . . if only us more "mature" folks can hold on and share in some of that!
     
    Take care!
  5. Like
    lw47 reacted to BeeRae22 in Flaring again...thought I was done here   
    I haven't been on this forum in a very long time, but there are some who may remember me. October 2013 my dd "caught pans" and we were on a horrific long road to recovery.
     
    The past year has been good. Ups and downs, a few rough patches, but all in all pretty good. In fact, for several months (maybe 4 or 5) dd(now 10) was 99.9% back to baseline. Even had the flu and a fever for the first time since onset and made it through with NO issues.
     
    So, about 4 1/2 weeks ago we stopped Bactrim. Still on zith, s acetal glutathione and probiotics. Somewhere around this time dd, ds and I all got a cold.... Se was first, then ds, then me. She is fine now, ds and I still have a cough. Anyway, around the 1-1 1/2 week mark off Bactrim, dd started showing signs of increased anxiety, more frequent hand washing, more worries about getting sick, etc. these behaviors became worse and worse.... Complaining of not feeling well, stomach ache and headache. Missed most of the last week of school because her stomach hurt.... Stupid me, I thought she may have had a stomach bug or something- until she had a complete anxiety attack, including some aggression which she hasn't had in a long time, on her last day of school. I then realized that there wasn't anything wrong with her stomach, she's full-on flaring
     
    We've had difficulty taking her off of Bactrim before-- can't figure out why. She's been on zith the whole time too-- 2 1/2 years now. Just out her back on yesterday..... Here's hoping it works.
     
    Another panic/anxiety attack this morning- missed yet another fun event because she "doesn't feel well". Started pharma GABA drops yesterday-- I thought they were helping last night, but apparently not doing anything this morning dosing her with Motrin as well- doesnt seem to be helping.
     
    I am so VERY tired of all of this..... She was completely back to herself, and here we are again with anxiety, OCD, aggression, etc. I just can't even believe it.
     
    This is never going to be over, is it?
  6. Like
    lw47 got a reaction from rowingmom in FYI: abx lyme study   
    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.
  7. Like
    lw47 got a reaction from pr40 in FYI: abx lyme study   
    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.
  8. Like
    lw47 reacted to wisdom_seeker in Help please: insurance med. necessity / efficacy of IVIG for PANS / autoimmune encephalitis)   
    Hi folks,
     
    My son has PANS with very high Cam-KII, but no anti-strep antibodies. It's now been over 7 months now since his symptom onset, and he's no better; a brilliant HS Junior unable to attend school. We've exhausted non-IVIG medical management, so we've been recommended high-dose IVIG+prednisone.
     
    How does a doctor (or I) persuade an insurance company that this is a rational, effective treatment, when all the (few) studies are on PANDAS, which he does not have?
    I'd love any
    advice on how to file a successful application and/or appeal! And, clarification on what is my optimal role? The MDs aren't jumping up to apply to the insurance, perhaps having been refused before. How can I help the MDs write a successful letter, given that it's not easy/pleasant for MDs either.
     
    Given DS16's high Cam-KII activation levels, autoimmune encephalitis seems a completely rational Dx, though his brain MRI was essentially negative, and
    (a) I don't even know if the Cunningham Panel test is accepted as evidence for autoimmune encephalitis, much less if it would be sufficient for Anthem BCBS to accept the Dx, ( we don't know the specific anti-neuronal antibody that causes his Cam-KII activation,
    and © there's still the matter of showing that IVIG is a necessary and rational treatment, even as a 3rd line Tx.  
    I can easily search PubMed, read the journal articles, but so far I haven't found any trials or even case series of IVIG for PANS or (nonspecific) autoimmune encephalitis. Have I missed even prospective or retrospective case series of IVIG / plasmaphresis for (nonspecific) autoimmune encephalitis. (The only studies I've found were for the potentially fatal NMDAR-encephalitis, or things like Guillain-Barre syndrome.)
     
    Still, many of you seem to have persuaded the insurance companies effectively.
     
    How?
     
    Thanks!
     
    wisdom_seeker
     
     
     
     
     
  9. Like
    lw47 got a reaction from reikiriki in New here, still trying to figure out my son   
    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.
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