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mommakath

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About mommakath

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    Georgia
  1. To finish info above, the bendryl and /or zyrtec seem to make it worse. He said they feel dry and like there is something in them. We have seen eye doctor several times and she is perplexed. This also leads me to think tic. Any other meds that can cause this sort of thing?
  2. My PANS son started an eye rolling movement with a neck jerk after being on asthma inhaler for 3 months. He also gets weekly sub Q IG (did ivig monthly previously thru IV) and a host of other PANS meds, but the only change had been this inhaler. Stop inhsaler, eye rolling almost stops. Start a different inhaler two months later, starts back up within two days. Stop all inhalers. Would rather live with cough, shortness of breathe when exercising. Now, it is back. Have wondered in my mind ixf this isthe beginnings of a tic. He has said he wants to have his eyes removed. It feels like someth
  3. We use MINI MINERALS 99.99% Pure Angstrom Element (liquid) produced and distributed by WHM Alpine, CA......www.worldhealthmall.com Also use Calcium and one drop of Lithium. Pure Elements so 98% absorption rate. They do not require digestion or enzyme activity and will not interfere with prescription meds. Told to take with Calcium and 30 minutes before or after anything else as pure elements.
  4. Our doc explained that GABA levels drop right before and during puberty. She uses it to get the moods regulated in the puberty years. We have noticed positive changes. But, had to find right dose. Different for each of my kids.
  5. It has really helped us and after 1.5 years of ivig and 2.5 years of lyme, bart, myco treatments, along with lots of gut healing, DD14 is finally getting a healthy immune system that is showing signs of working as it should. But, it's not been any one thing.....it's been the combo. I think I've read that low IgA means certain types on ivig only? May be wrong on this but was wondering if that may have been part of the bad reaction. I will say that we changed brands and went from every other month to monthly. Monthly made a huge difference in their reactions. Plus, we tweaked pre and post meds u
  6. We have been dealing with rising IgG and IgM titers for over 2 years. Just this last month, after 2 years of ivig and increasing biaxin dose have we seen response. It was explained to me that since her IgG is still rising but her IgM has started declining that the body i finally reacting as it should and we are seeing response. Google Garth Nicholson and he has written and researched MycoP extensively. And, with all exposures, symptoms can disappear after 10 days while the bacteria remains active. MycoP symptoms overlap with Pans and Lyme quite a bit. Best Wishes!
  7. Okay, DD14 been getting IVIG for almost 2 years. The last few months, she has been having issues with equilibrium afterwards, lasting about 10 days. Six months ago it would manifest as severe motion sickness only in the car. The last three months it has changed to being more of it appearing as though the floor is moving. It is worse in smaller rooms. Docs have been perplexed. Ears have been checked out by pediatrician. He is referring us to an ENT but mentioned us talking with IVIG doc about it and see if her body is being sensitive to the IVIG which would mean possible discontinuation, in his
  8. Okay, DD14 been getting IVIG for almost 2 years. The last few months, she has been having issues with equilibrium afterwards, lasting about 10 days. Six months ago it would manifest as severe motion sickness only in the car. The last three months it has changed to being more of it appearing as though the floor is moving. It is worse in smaller rooms. Docs have been perplexed. Ears have been checked out by pediatrician. He is referring us to an ENT but mentioned us talking with IVIG doc about it and see if her body is being sensitive to the IVIG which would mean possible discontinuation, in his
  9. Stand Firm! You are a great Mom and one thing I know about us PANS/Lyme Moms, we do not quit! Keep on, day by day, working through this. IT WILL GET BETTER! There isn't a single person on this board that has been stuck forever - some days up, some months down, but we are not stuck forever. She will get better! You will know when to do what. I have two kids and they both have done intensive CBT/ERP with Storch and group. One was very successful as her thoughts traveled with her. The other, was not as his thoughts didn't travel and they couldn't replicate them there. Both are PANS and Lyme.
  10. Believe checking VEGF is part tof Shoemaker neurotoxin testing.
  11. Thanks ladies......I had read the infection induce trigger and actually found some posts on the pandas forum about crossover between the two. I am meeting with her today and my gut has been to tell her to rule out "infection induced pans" and lyme. Regardless of what it really is, I think she should have him try the treatments for each. So, I will send her to LLMD and PANS doc who also happens to be functional medicine as well. So sad to hear how it has affected their lives. Grateful for the input!!
  12. Have a dear friend with husband diagnosed with KLS about 7 years ago. After speaking with her today, I am wondering if it would be advisable for her to seek of LLMD and invastigate if this would be Lyme related or biotoxin pathway induced (thinking alonf the lines of Shoemaker)? Anyone have any experience with KLS and/or know if it is frequently misdiagnosed and is really lyme? Just curious......trying to help her as it is devastating illness. Very rare and very few "experts" to help navigate it.
  13. My son would tell me that it's not that he liked watching TV, it just kept his mind occupied so his thoughts were not so bad. With my daughter, she tries to always stay active and keep her hands busy to keep her mind quiet. It might just be coping mechanism.
  14. My son had such a bad flare once we started trating cyst form lyme that we were truly desperate. We went for IVIG and it was a miracle for settling the flare. We didn't do any steroids first treatment and had severe headache and nauseau for few days. He felt rotten. We then used the steroids, meldrol push, and benadryl and motrin. Our LLMD said this short term use of steroids was fine - just don't want long term, month long, steroid tapers. Know this is greatly debated but steroids made the IVIG tolerable. Having said that, we missed IVIG for 2 months and when we went back for it, still had ba
  15. It's been suggested to us to run Shoemaker testing on son. Anyone run the C3, C4, and HLRA testing he proposes? Done the treatment? Just curious before we go down that trail.
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