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PacificMama

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  1. Hi, I just wanted to add that for my daughter, who was successfully treated for lyme by one of the top docs, Omnicef was one of her primary abx. Mary
  2. Nancy and LLM, FWIW, my older daughter did this exact same thing. She would later refer to it as doing "statues" (she was about 6-7 at the time). She has been successfully treated for lyme, and these symptoms resolved with treatment. I was never sure if this was some sort of neuro glitch, or just OCD. It seemed uncontrollable to her. I remember bringing it up to her LLMD, but now can't recall what exactly he said about it. This started happening right before she relapsed into only neuro symptoms (ocd; chorea movements; hippity-hops; etc).
  3. Hi Patty, We have relatives who took their teenage son for evaluation at Columbia. I'm not sure if it fell under the "2nd opinion" designation or what. And I can't tell you what exactly was evaluated, except that it was pretty thorough. Their hope was to get the "diagnosis" from somewhere official and respected so that they could get the proper abx treatment back in their home state. I know they felt like it was a good experience, and of course liked Dr. Fallon very much. I do think it was fairly expensive. I haven't checked the Columbia site, but I know from time to time they have tri
  4. Davros, I will pm you the name of a doctor who practices outside of Chicago. He treats patients with lyme and related infections, and also PANDAS. He has a relationship with Dr. K, and refers his IVIG patients to him. This doctor could most certainly help you to consider and test for infectious possibilities. Best wishes. Mary
  5. Hi Fixit, Sounds like not the greatest... and maybe you would be better served elsewhere. But perhaps useful for some things. The Marshall Protocol would throw up a caution flag for me. We had a thread going here a while back if you want to look at that. I would just urge great caution before going down that path. Look forward to hearing your thoughts after your Dr. B appointment... I suspect you will see a great contrast. And yes, if you want to PM me, I'd like to hear about your experiences with parasite cleanse when you get a chance. thanks. Mary
  6. WD, So glad your appointment went well, and you've found another doc for your team. One great thing about most LLMD's, regardless of the infection causing problems, is that they are on your side from the moment you walk through the door. No need to plead and convince. It's a nice feeling. I'm not sure what "local" is to you, but if you feel comfortable, could you please pm me the contact info for the llmd -- we have a relative looking and it sounds like you like this doctor enough to recommend him. Best of luck going forward. Mary
  7. Hi Jodie, While the details may still be confusing, the big picture is the same: You are dealing with tick borne infections. And your son's diagnosis is perhaps another confirming clue. And the history you have described for yourself. I don't think it's imperative to have it all nailed down right now. Treatment will reveal more clues, and dictate direction. I posted this in another thread, but it's worth repeating that LLMD's will refer to TBI's as "borrelia-like infection"; "bartonella-like infection." Too many strains; too many still unclassified pathogens. But they do respond to tr
  8. Cobbie, You've gotten lots of good advice from others here. It is simply just a sad fact that there are people who can't imagine how a physical illness might make a person (especially a child!) behave "worse" than they might otherwise. I don't know why... because pretty much everyone has at least had a headache and been snappy. As lymemom said, lyme is "invisible", and so people can't see the disability. I have to say, I would have always thought of myself as a caring / sympathetic person. But having the experience of having a sick child who sometimes just behaved badly in public -- th
  9. Thank you so much to everyone for your replies! The information is very helpful. I should have mentioned that I do give probiotics and various supps to my daughter. We just switched from Theralac to Custom Probiotics (I do think theralac is great, but with with the bulk powder of Custom we can regulate dosages easier for our whole family). I am going very slowly to increase dosages on things for her -- she is so sensitive. Over the past couple of years I have tried several times to introduce probiotics to her (before we knew lyme or yeast, etc), and she literally would herx with symptoms a
  10. Hi all, I’m looking for input on potential testing / lab work / consideration for things that go along with lyme and coinfections. (we are pretty well covered in considering lyme, and all the major coinfections that go along with lyme). Mostly, I am looking for feedback on things that may affect the gut. This is for my youngest daughter, and we have a llmd appointment next week. She does have positive Igenex. (as a reminder, my older daughter has successfully been treated for her lyme – but was such a different case than this younger daughter). My younger daughter’s (6) major problem h
  11. Thanks for posting this -- the symptoms you posted are often found in lyme. I know different kids/people who had the difficulty swallowing/gag reflux. When my older daughter first became symptomatic -- she was not yet 3 -- her most defining symptom was great pain in her facial/jaw area. She would say a million times a day how much she hurt. It was unbearable, and we were in a panic running her all around to every specialist imaginable. My mother-in-law (in denial of her own lyme) had been diagnosed with Trigeminal Neuralgia -- which is dysfunction of the 5th cranial nerve. It is an excruci
  12. Most labs running the western blot will follow the CDC reporting criteria for determining a positive, which is a positive of at least 5 of 10 possible bands. Often misunderstood by many physicians, this criteria was originally set up by CDC for reporting purposes only -- and they do not intend for it to be diagnostic. Also, due to a short-lived vaccine years ago, the CDC excludes the 2 most specific bands for borrelia -- and so most labs do not test for these. The Igenex western blot is considered superior because 1) it does test for these 2 very specific borrelia bands, 2) it includes mor
  13. OK... I just wanted to post again because I wonder if I gave an incorrect impression. A person can certainly have lyme, and show up with only Band 41 positive. I more meant to say that Band 41 is fairly specific to lyme, but not completely specific because there are other spirochetal bacteria. Not many, but some. I see on your other post that you are getting lists of bacteria with flagella -- but just to clarify, it is the flagella of Spirochetal bacteria. Also worth noting, is that usually band 41 comes with the note that it is typically the first band to show positive for IGM. But no mat
  14. LLM, I always see Band 41 explained as the flagella of specifically a spirochetal bacterial -- and the only three spirochetal bacteria that are ever listed are borrelia; syphilis; and dental spirochetes. Band 41 is specific enough to be included by the CDC and Igenex, but is not one the bands that is considered specific to only borrelia. I see people have posted other possibilities, but I do think it is identified with spirochetes only. As to strep, Dr. T (pandas doc) stated on this forum some time back that "It is NOT found in streptococci or mycoplasma, so infection with those ca
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