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Everything posted by socalmom

  1. Thanks. I have Neuro issues as I was misdiagnosed for over 10 yrs. I signed up to a yahoo group but it meets so far from me. (i am in Southern CA) I'll PM for name of your group.
  2. Thanks guys, I would of asked to swab it but this was told over the phone, and she seemed to be so sure, I have nasal staph so this may be why. If I see it again I will ask to swab it. I didn't know this was an option, makes sense though.
  3. Thanks for the feedback. I have started my son on them per our LLMD.
  4. I don't have personal experience with this lab, but I thought to mention there is info on it, at the better health guy website, he gives feedback on various labs and their profile. I think Clongon is fairly new.
  5. I wasn't sure where to post this, hope here is ok. I was told my son has Staph as his bottom is bright red (no bumps) around his anus and hurts. My LLMD said it's Staph and put him on Beg spray and Bactraban ointment. ) I looked at pics of Peri anal Strep online and read up on it and now i question if it is staph? Whats the difference?? How does one know? I trust my LLMD, just wonder if it's an honest mistake as she never saw it she had me describe it.
  6. I am sorry you are having such a rough time. I can relate, as I have had in the short span of 3 months my son (5) dx'd with PANS, lyme and now me with lyme and my house has mold and I have to get out ASAP. I wish I knew where to go to a lyme meeting, I don't even think they exist where i live? Xanex is my friend right now. -Carma
  7. Anyone ever use these herbs? I am just starting DS on them, just thought to ask if anyone had personal experience with them? http://www.beyondbalanceinc.com/docs/productsheet.pdf'>http://www.beyondbalanceinc.com/docs/productsheet.pdf http://www.beyondbalanceinc.com/
  8. Your kit has 36 species which is the same as ours so it could be the same one (although yours says '5 day' so not sure what the difference between 5-day and 1-day is - maybe quicker turnaround?). On our test the chemist pointed out an Aspergillus # that he said to be concerned about. After researching it found out it is the most toxic and can cause damage to vital organs & cancer! Had no idea that mold could cause these things! Mycometrics is the lab that Dr. S recommends in his book, but that was written 2 years ago. Keep us posted on the results. Interesting: A study was done on mold growth with and without EMF's and the one with the EMF's grew much faster than the one without (cell towers/cordless phones etc.). Why no stachybotrys? This one showed "ND" on our test which I believe means 'not enough to measure'. All of this is overwhelming, I agree, felt the same way when we looked into it. But now with my Dh test's high (TGF beta-1) too we are glad that we know about it and are hoping that it is remedied. We figure we may be healthy in our old age now but broke! Have you done the HLA genetic testing yet? When I cleaned home top-to-bottom I got rid of everything that I could but kept things that could be washed and/or dried for 30 min. or more. Furniture was vacuumed although when I replace it will get leather instead. So it really depends on your susceptability to mold illness. No, no genetic testing yet, just switched LLMD's as mine was not experienced and didn't explain anything to me! Is HLA genetic testing the one where you do the test for foods, antibiotics, additives, etc? I think I have a test order for this, haven't filled it yet.
  9. *Hi. No, mold is not an issue for all Lyme patients. If I was starting to question whether mold is an issue for my family, I would order the ERMI test (google) it is a simple kit you buy online, they send out, collect either vacuum or floor samples, send back to lab, and you get a detailed report and graph/rating system for particular molds that may be in your home. If the report comes back unhealthy high, next step would be a mold inspection. 'Shoemaker' (google and mold) seems to be taken as the genius of mold, and if you want to get way into it, he has books and website. Thanks, I do have mould in my house, Aspergillus, got an ERMI kit and now trying to make sure I don't have toxic black mold" stachys, as I did an air sample and I was told only ERMI can tell if I have stachybotrys.
  10. I bought it at EMSL it was 165.00 and it says ERMI mold test kit. My first test was an air sample that showed Aspergillus http://www.emsl.com/ProductCatalogDetails.aspx?Name=Mold-Test-Kit-with-ERMI-5-Day-TAT-*Non-Refundable*&ProductID=MTK-ERMI-5D I assume it is the same as mycometrics, as I think the Dr. is looking for an ERMI " NUMBER' as you pointed out. I am trying to get a reading to see if we also need to " ditch" our belongings or if we can take them to a new place. We need an ERMI that shows no stachybotrys. I know my son and I have staph infections from mold and we are being treated. Thanks for your help, I am truly running to try and keep up with all that has been revealed to me, and mold is such a serious issue.
  11. sptcmom, wow, you really have a handle on this! I am so new to all of it I hope I can learn this as I go, sometimes I feel like I am " cramming for finals" Thank you for sharing your son's story/info. I am encouraged by your replies to my post. -Carma
  12. I think someone on here said Lifeway Kefir is strep thermophilus free, you could always call Lifeway.
  13. Hi S&S. I am pursuing mold issues, anything you could share that might help me? Is this a issue with all Lyme patients?
  14. I mean the LLMD uses it for all children and adults as his routine protocol not just for the severe ones like some do. Very different physiology and toxicity levels in adults and children. In adults its already in deeper in today's world plus if not, adult cell membranes can tolerate repeated permeability adjustments much better than pediatric tissues can. Adult detox pathways can also handle changing influx of chemicals better than compromised pediatric detox channels can. In gestational lyme the mom might be holding on pretty well but the affected child has to deal with her downloaded toxins and their own acquired ones. Its very different dealing with a child's patho physiology in chronic degenerative disease. Adults have much higher levels of epigenetic and environmental exposure, years of toxins, bad food choices, stress, life style issues, misdiagnosis etc- long list. Most I see have been travelling the MS and CFS route for years and finally stumble upon lyme. In children its preventable if caught early enough and treated from all angles. What I've learned is pulsing teaches the microbes to change forms faster and burrow in deeper to resist. The surface proteins change faster and there is a higher risk of increasing already existing autoimmunity or inducing autoimmunity thru molecular mimicry of these changing surface proteins. One of the emerging theories of IVIG resistance in somIce kids. IVIG shuts down the adaptive immunity naturally since the body senses an influx of donor antibodies. The innate system will never accept donors as self easily. The adaptive is shut down. The microbes panic at the new arsenal and defend themselves by rapidly changing form and/or surface proteins causing a major stirring up of stuff, increase in molecular mimicry scenarios for several weeks. This is for lyme and PANDAS kids or Lyme only that are getting IVIG to build up their immune systems they have been told by their docs. Many I see are doing very poorly after IVIGs every 8 weeks. Herbally and allopathically treating as many coinfections together as possible is the key and ofcourse as you already know, in the right order of elimination. Steady dosing creates a sustained blood level of the desired herbs/abx and is gentler on pediatric tissues. Again, my experience and learning. This has been my learning and experience so far. Always happy to learn more. How do you know the right order of elimination?
  15. HI Julia, I bought an ERMI test but NOT from mycometrics, is this still the same test, and will the dr. still be able to interpret it??
  16. For us, we had a PANDAS doc, LLMD, neurologist, Dan! doc and an allergist/immunologist. But, our natural doctor (chiropractor/wellness doctor) has helped possibly as much or more than the LLMD. I can't say our time on abx and other lyme meds was not worth it, it was. So maybe it was the progression of things. We needed the medical lyme meds first and then the naturals is working on the rest. Things overall are going very well. I highly recommend seeing someone who does muscle testing and uses alternative methods in addition to the other docs you have. Supporting the whole body has really helped us. I resisted this a lot due to the cost but it has been worth the $$$. The psychiatrist we saw was not all that helpful but I took my dd and not myself, maybe that was our trouble Susan thanks, thats what I am trying to do now, is get Dr's I like and feel confident about and proceed from there. Naturals/integrative is important to me. Sometimes i think the kids are far more resilient than we are!
  17. - their immune system steps out of the way..... and their little bodies accumulate these additional toxins. This is the genetic plus epigenetic issues we see in our kids with gestational Lyme and post lyme acquired PANs. PANS in my DS's case and many cases gets recognized first due to its dramatic onset and progress. So it's not just the " faulty" genes they are born with but what these " faulty" genes cause in the process that is a problem?
  18. sptcmom, What a thorough and well written response to my question. Thank you. I wish my brain worked better as all the str ess/illness in the last 3 months has taken a toll on my brain and body.
  19. This is what I've learned from my mentors and my own study- Kids with Gestational Lyme are born with immune system errors. Their bodies donot recognize Lyme, coinfections and anything else transferred thru mom as foreign. As a result the endotoxins /biotoxins produced by these microbes which also contain the signature oscillations (DNA) of the microbes themselves is also not recognized as foreign.Breastfeeding /nursing is also a similar mechanism of transfer of material. Now what happens is when these kids come in contact with other toxins- strep, pesticides, oxalates etc that are very similar in molecular structure to the microbes already welcome in their bodies, --- their immune system steps out of the way..... and their little bodies accumulate these additional toxins. This is the genetic plus epigenetic issues we see in our kids with gestational Lyme and post lyme acquired PANs. PANS in my DS's case and many cases gets recognized first due to its dramatic onset and progress. On top of that gestational Lyme and Co kids can have several genetic polymorphisms or defects for Liver and other detox pathways. This is because if the mom's detox pathways are compromised due to lyme and Co, so will the childs from that half of the genetic material. Many moms pass the infection to dads as an STD (still controversial and being researched). So if dad's detox mechanisms are compromised too then the child is getting a real bad deal. I have seen this to be true for myself (I have gestational lyme, PANs) and for my DS and my DH. Also for many families in my practice. Kids without gestational Lyme and a tick bite later on in life , if no other diagnosis is present, they fare better. Kids with existing neuro/psych diagnosis like ASD etc are another story. So it depends on the clinical presentation. Hope this helps to explain the differences.
  20. I see hyperbarics mentioned everywhere from Autism to Lyme. One TV reporter with Lyme said it was integral in her healing from lyme. I think it makes sense, it's just expensive and rarely covered by insurance i think. Jenny McCarthy went on some talk show and talked about how she liked it so much she bought one for her house.
  21. Dr. T says to steer clear of these as well. I trust his judgement, the man knows his stuff. Better safe than sorry I say. Our Dr. who did IVIG did not know this and I brought it to his attention, due to the fact his nurse was handing out a paper after IVIG with foods high in Vit C and Tryptophan and raw cheese and yoghurt was on this list.
  22. This was the first " tic" my son showed. Of course we didn't realize it was a "tic" and were driven mad by it! I even have it documented on a visit to the Dr when he had strep throat and the Dr. wrote this down.
  23. I had it done through LAB CORP it was covered by ins. and my son is very low. It's a controversial test to some but for me i think it's reflective of just how sick my son is. I think it's also re checked before any LLMD considers stopping treatment for Lyme as It's numbers are thought to be able to tell wether you will relapse I read somewhere. hope this helps.
  24. Thanks you for your helpful info. Is this muscle testing "ART" testing? I haven't done ERMI test yet, looking for a guy to do this in LOS Angeles, but the results we got so far aren't good. What does ERMI consist of? Is it the one where they punch a small hole in wall? My Dr asked us to do ERMI test.
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