Wilma Jenks Posted January 27, 2011 Report Posted January 27, 2011 my daughter shows possitive band 41 for lymes on blood work. doctor said he always sees that with PANDAS kids. meanwhile my child gets violent with every med/supp. we try. nothing helps or makes things worse. she is in very bad shape. someone said they would look further into lymes, but does it really make a difference if its pandas or lymes, since there both treated the same way?
sf_mom Posted January 27, 2011 Report Posted January 27, 2011 Actually, they are not treated the same. Pandas is considered and auto-immune disorder in absence of infection where Lyme is considered a chronic infection. With Lyme, combo antibiotics are used to attack both the outer cell wall and inner cell structure while using some antibiotics that actually cross BB to kill infection. Yes, the infection is in the brain. Auto-immunity occurs due to chronic infections not in absence of infection. Most LLMDs believe once the infection/s are resolved auto-immunity stops. Two of our children were band 41 positive only via Igenex. We did not discover Lyme until we did provocation and DNA testing via the urine. Our third child who was not tested originally was positive of Bartonell/Babesia. The Lyme protocol has been an affective treatment for all three of our children who got if from me congenitally.
philamom Posted January 27, 2011 Report Posted January 27, 2011 Wilma- I think the addition of a cyst buster antibiotic (not used for PANDAS) is what helped us the most. Not to your extent, but my daughter also reacts to every med, supplement, vitamin, exc..we try. I have an entire cupboard of products that I usually give up on. How old is your daughter? There is someone that could help in NJ...not sure if he only treats adults...i will check into it and get back to you!
mama2alex Posted January 27, 2011 Report Posted January 27, 2011 Wilma, I really feel for you! I've read your past posts and feel strongly that you should consult with an LLMD. If your daughter is reacting to so many things, including vitamins, medicines, and probiotics, you have a complicated situation and you'll need an LLMD who understands and can work with supplements and potentially some alternative therapies. You don't have to have a positive Lyme test to work with a Lyme doctor. They will be able to look at any potential infections/toxins/other illnesses that may be causing her symptoms and sort them out. The PANDAS doctors are focused on the autoimmune response for the most part and some won't even consider the possibility of a current/chronic infection or infections. Considering how severe your daughter's case is, I think its essential that all potential infections be looked into, not just dismissed because of one negative test. My son has tested pos for Bartonella, but always negative for Lyme, but I don't consider that definitive. The tests just aren't good enough to base a diagnosis on them alone. Jennifer
Wilma Jenks Posted January 27, 2011 Author Report Posted January 27, 2011 she is 11, and we have been to dozens of doctors. traditional and alternative. no luck. what is an LLMD?
Wilma Jenks Posted January 27, 2011 Author Report Posted January 27, 2011 isn't pandas a cronic infection? just like lyme's disease?
cobbiemommy Posted January 27, 2011 Report Posted January 27, 2011 LLMD stands for Lyme Literate Medical Doctor. These docs usually have extensive training in chronic disease and Lyme in particular. Pandas is a chronic autoimmune reaction (the immune system perceiving a threat and attacking different parts of the body) whereas LYme and coinfections are a bacterial infection that can actually penetrate the blood brain barrier. Please tell us where you are and maybe we can guide you towards a good LLMD. Cobbie
mama2alex Posted January 27, 2011 Report Posted January 27, 2011 Cobbie, I think she's looking for someone in New Jersey (saw it in another post). We are on the west coast, so I can't help refer to a doctor. LLMD stands for Lyme Literate Medical Doctor. These docs usually have extensive training in chronic disease and Lyme in particular. Pandas is a chronic autoimmune reaction (the immune system perceiving a threat and attacking different parts of the body) whereas LYme and coinfections are a bacterial infection that can actually penetrate the blood brain barrier. Please tell us where you are and maybe we can guide you towards a good LLMD. Cobbie
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