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tpotter

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Everything posted by tpotter

  1. Babesia is treated with anti-malarial medication. I agree, that you should go see an LLMD. If you need names, PM me.
  2. Jodie is a mom on our forum! Way to go Jodie!
  3. Agreed. And herxing is a sign of lyme, as is air hunger (I had that after being on azith for 1 month straight...it was horrible, but eventually cleared. And detoxing is quite important. If you aren't already, I would also make sure you are taking plenty of probiotics, including sacchromyces, since you brought up the issue of candida. You certainly want to avoid that.
  4. Dry coughs can be a symptom of mycoP. Sounds like everything is coming together. I am so happy for you.
  5. She has a very, very long waiting list (they told me I had to wait about 6 months for them to call me to even make an appointment. I couldn't wait that long, so I found someone else (very please with him.) But, I've heard she's excellent.
  6. I get very tanned through my car window (luckily didn't get burned, but that's because I put tons of sunscreen on every morning (even now that I'm no longer on doxy.) But, I got way darker than I got in the past. You might want to ask the doc about minocycline. It's similar to doxy, but the sun is not as much an issue. DH had to do that.
  7. I actually know of some people who are helped by the chlorine in their own pools.
  8. Bacterial influenza. Just because it's not specifically PANDAS doesn't mean it didn't cause his symptoms. It would describe PITANDs (Infection triggered), and the overall umbrella of PANS. Good luck getting PEX.
  9. Did you tell Dr. L. that LLMD says IVIG is fine? Maybe have LLMD write a note directly to her. Dr. L. likes to have coordination with other docs, so a personal note from the other doc (fax should probably work) may do the trick. It's worth a try.
  10. Jeannie, You may want to try DAN dr or holistic chiropractor (or ART...they're very similar), and see if you can get some more answers.
  11. I was also going to suggest xbox live.
  12. Just showed it to DS, who we know has gut issues, recurring c-diff, and now as a college student, is overloading himself with sugary drinks (aargh!) We've had multiple discussions (well..mostly me doing the discussing,) and I showed him this yesterday. He had actually stopped drinking the stuff for about 2 weeks while we ruled out candida, and is now back to drinking it all again. Clear difference in behavior on and off the stuff. Last night, he couldn't look me in the eye for 5 seconds, he's super loud, and he's barely eating again.
  13. I would definitely test for c-diff, giardia, and h-pylori. Sounds like there's a lot of gut issues. BTW, PANS stands for: Pediatric Acute Onset Neuropsychiatric Syndromes, and it is an umbrella for PANDAS and PITANDs. It includes infection and environmental triggers, which may explain your child's symptoms. I would also check for lyme. DS has terrible nausea every time he gets sick.
  14. Here's what I would do: 1) start now to gather your information 2) Get a printout from the insurance company as to what they require to approve IVIG for CVID, and then really, really read it carefully. 3) Follow every single step it says to do, e.g. if they say to prove that the CVID has been making your child sick, then get dr. records from the past year to show how many times your child has been treated for bacterial infections during that time (in our case, it was 8 - 9 times in 1/2 a year per child...that's very significant.) I then followed up by telling them that I didn't want my child to have to be on abx forever, because he would build up a resistance. I also showed how many days of school my children had missed each of several years (up to 32 days for one of them, alone), to help prove that the child was getting sick all the time. 4) Any other requirements...make absolutely certain that you and the dr. both address them completely. 5) If you have to go to a 2nd level review (if the peer to peer is still denied, for instance,) that you have your information together that you need. But, the bottom line is that you have stick to the insurance company's requirements, and you can only do that if you know for sure what they require. Good luck!
  15. I did find a doc in St. Louis that will treat, but want to stick with Dr. B through the first few treatments. I am not happy with docs at Children's Mercy in KC, so trying to avoid that place. I totally get it :-) How often is she going to need it, and is it going to be HD or LD, given that it's a primary ID?
  16. We have slowed down the infusion rate one time when headache started, and we always do it over a 2 day period. We did benedryl and ibuprofen every 6 hours (prescribed by doc based on weight), and continued with the ibuprofen for about 3 days. We do not do steroids, because of lyme (not recommended for lyme,) although one time during the infusion, things got so bad, they did infuse with steroids through the IV (that was our backup plan.) The headache will be there anyway, but drink lots and lots of water starting about 2 days before infusion, make sure your child is drinking water (not sugary drinks) constantly throughout the infusion, and then continue afterwards.) This should help minimize the headache. I question the lasix, because it will remove water, and you want to hydrate not dehydrate. Good luck.
  17. This is beautiful. Thank you for sharing.
  18. YEAHHHHH! If it's a primary immune deficiency, can't you get something closer to home from a local immunologist? I would think that would be readily acceptable as a dx for them to treat? Is this something you're going to consider in the future (you might even be able to do it through home care?
  19. Azithromycin is one of the drugs used to treat some lyme and co-infections (DS took it for bartonella and lyme until he had a major allergic reaction.) She may be herxing, which may be further indication that she has lyme, and again lyme can cause tachycardia. I don't want to be-labor the point, but many parents have found that their children had other infections, such as strep/staph, etc, plus turned out to have lyme, which is a clinical dx (not always lab, because the lab tests are quite inaccurate.) DS is a good case in point. The only reason we decided to test him and the whole family for lyme (we were positive it was only strep), was because we were have a battle for IVIG with insurance, and I had to do SOMETHING while we waited. So, we went to an LLMD. Everyone turned out to have it, and DS even had the bartonella stretch mark rash that we didn't know was anything more than stretch marks. He only had 1 IgG band positive on the WB. After about 6 months of tx, he was not getting better, and I had almost decided that it was not lyme after-all, until all of a sudden his spleen enlarged, liver enzymes jumped, and ASO jumped. He was put on IV abx, and the stretch marks suddenly started fading dramatically! That's when we knew there was no question. I would definitely ask your dr about the azith, but please keep an open mind to the possibility of lyme. More and more parents on this forum are finding that their children are turning out to also have lyme, which definitely affects the immune system, the nervous system, etc, and so their children have lyme, strep, staph, viruses, etc., etc. And, until all infections are identified and treated, these children will not be able to get better. Again, she may be herxing if the azith is actually treating lyme, and that could be causing the tachycardia.
  20. Many PANDAS/Lyme kids have low-ish IgA, but it is not considered a huge problem unless it is around <10 (that's what we were told by 2 different immunologists). Both my children have low IgA, but in the 30's, and we were told it was fine for IVIG. Also, as I recall, one of the IVIG's is ok to give, but there's a difference as to what it is given with. There was a thread about 2 years ago on this subject (under PANDAS forum.) Sorry, but I can't remember more on this.
  21. Lyme can cause tachycardia. DS16 has had it repeatedly, and as we treat the lyme (in addition to the strep and everything else), the episodes of tachycardia are getting less often.
  22. The email address is usually just for IVIG. I would have the pharmacy call his office, and ask for the refill. They can ask for a fax number if necessary.
  23. I totally agree with you getting to a PANDAS specialist ASAP. Realize that you may convince your dr otherwise, but s/he is also under pressure from the AAP to NOT prescribe abx. That being said, I would suggest that you print out copies of the Columbia (2010) mouse study, and the Tel Aviv (2012) rat study. Both show that strep antibodies (not just the strep itself) causes OCD and tics. The Tel Aviv study demonstrates behavioral, pharmacological and immunological abnormalities to strep. Finally, you can also give tell him that Dr. Murphy is starting an abx trial (using azith specifically), and that there is an ongoing IVIg study with the NIMH/Yale. He may not admit to you that he "gets it", but the fact that he treated your child this long is really quite a big deal, because it took us 4 years to even get a dx (despite suspecting something of the sort was going on), and then DS only got abx sporadically for the next year from a supposed PANDAS specialist until we finally got to several great docs. I agree that it is quite absurd that these top medical places around the country just refuse to accept, but now it's time to just move on.
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