LNN Posted September 30, 2011 Report Posted September 30, 2011 CandK - join the crowd - very confused here too. Maybe it's a good thing your LLMD appt was postponed. We see a different LLMD in CT who helped us find the KPU trail. But I have so much more to learn about it. Just be aware that as we all learn about this, it may be the forum disease du jour. Take our discoveries with a grain of salt. I don't think any of us have it all figured out. But it sounds like you sure have enough reason to learn more. I hope it proves fruitful!
CandKRich Posted September 30, 2011 Report Posted September 30, 2011 (edited) . Edited August 12, 2013 by CandKRich
sf_mom Posted September 30, 2011 Report Posted September 30, 2011 (edited) Unraveling KPU for our son was only one piece of the puzzle. Treatment has definitely helped but it hasn't fully resolved symptoms either. If there are obvious signs of KPU then I'd definitely run the test, treat depending on results and see if you can't get some improvement. Its not an either/or type of situation with the Lyme/Bartonella/KPU and whatever else will crops up for your son throughout treatment process. It will all need to be addressed. For us, testing/treating for viruses was as significant as treating for KPU. There are a few that work with both Integrative or Naturopaths along side their LLMDs and LLMDs that provide an integrative perspective. If you feel appropriate, definitely check out in advance of LLMD visit in Dec. About the cracked lips... often the lips are cracked in the corners of the mouth. Our son had only chapped lips 'not cracked corners'. I also remember thinking my son will be better when those chapped lips are resolved!!!!! I have definitely noticed chapped lips coming and going with Herx responses but over time they have improved a great deal. Edit: Just read your recent post and I'm sure you'll get some good perspective on different Dr.'s philosophies in your area. -Wendy Edited September 30, 2011 by SF Mom
cfamily Posted October 2, 2011 Report Posted October 2, 2011 Hi All, We have not been on the forum this summer, but have aggressively been treating lyme with antibiotic rotation. I have been wondering what to do about my daughters hair that has gotten thin, chapped lips, dark circles. This sounds like something for us to look into. We are also stalled in our progress 9 mos into lyme treatment, we still have lingering ocd and rage. Where can I order the tests or do I have to have our llmd/ped do them. Thanks for your help.
Suzan Posted October 2, 2011 Report Posted October 2, 2011 Hi All, We have not been on the forum this summer, but have aggressively been treating lyme with antibiotic rotation. I have been wondering what to do about my daughters hair that has gotten thin, chapped lips, dark circles. This sounds like something for us to look into. We are also stalled in our progress 9 mos into lyme treatment, we still have lingering ocd and rage. Where can I order the tests or do I have to have our llmd/ped do them. Thanks for your help. We are treating even in the absence of a positive test since these tests are not always reliable. This is not the lab I used (I had trouble finding this one for some reason) so I wonder if the lab I used was as good. I think this is the one that is recommended to use. http://www.integrativepsychiatry.net/cart/view_products.php?SubCat=120 You do need a doctor to sign the order to process the test. Good luck! Susan
LNN Posted October 3, 2011 Report Posted October 3, 2011 We used Vitamin Diagnostics http://vitamindiagnostics.com/ They too require a doctor's signature. You need to be off supplements - those that contain any vitamins or minerals - for 5-7 days prior to the test. It's a 24 hr urine catch.
Christianmom Posted October 5, 2011 Report Posted October 5, 2011 We used Vitamin Diagnostics' KPU test as well.
Christianmom Posted October 21, 2011 Report Posted October 21, 2011 Glutathione (GSH) test. Many labs, including Great Plains, do this test. Does not have to go to a specialty lab. I believe most hospitals do glutathione testing. It's a simple blood test to check glutathione levels. But very important! Does not have to go to a specialty lab. What is the test and which lab? Do you know if Quest of LabCorp offer this test? I can't seem to find it on their test menus?
trggirl Posted October 26, 2011 Report Posted October 26, 2011 Hi, I was also wondering if Labcorp or Quest tested Glutathione. Does anyone know? Thanks.
LNN Posted October 26, 2011 Report Posted October 26, 2011 Hi, I was also wondering if Labcorp or Quest tested Glutathione. Does anyone know? Thanks. Our LLMD was looking for a lab to test glutathione yesterday. He struck out. Not even Genova. Just pre-cursor tests. But he knows some of his patients have had it tested. So if anyone knows how/who tests- please post.
SSS Posted October 26, 2011 Report Posted October 26, 2011 Hi. Here is a glutathione blood test from Great Plains Laboratory (whom I've used in the past, and like as a company) http://www.greatplainslaboratory.com/home/eng/glutathione.asp DD and I have not had the Glutathione test done, however, given our immune system status (not good!) we are both taking RediSorb Liposomal Glutathione it is a liquid, unpleasant tasting, but we each take 1 tsp. every morning, mixed in a little strong juice. HTH.
CandKRich Posted October 29, 2011 Report Posted October 29, 2011 (edited) . Edited August 12, 2013 by CandKRich
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