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Everything posted by mdmom

  1. We've been using Milk Thistle (300 mg twice daily) for liver support during Lyme treatment. Have had success (normal liver levels despite high doses of abx, antifungals) for 9 months. Thinking of switching to NAC for liver support, as I have also read it might help with OCD and anxiety. The capsules I am looking to use are 600 mg. NAC. Is anyone using this? If so, how much are you using?
  2. Lactose is the sugar found in dairy products. Casein is the protein found in dairy products. Lactose-free products only have the sugar removed (like Lactaid milk and ice cream). In order to remove dairy completely from a diet, you must also remove casein, which means avoiding anything containing a milk ingredient. We have been casein (and gluten) free for 3 years. It has really benefitted my family, particularly my PANS/Lyme son.
  3. http://www.mdlab.com/pdf/lyme_disease_testing.pdf Looks like they test for Bb and 2 strains of European Lyme. If you see my earlier post, I am looking for alternatives to Igenex.
  4. My DD12 has been clinically dx with Lyme, Babesia and Bartonella. She is serologically positive for Babesia (WA1), serologically negative for Bartonella (but has the 100% diagnostic "stretch mark" rash), and serologically negative for for Lyme (only Band 58 positive on CDC Western Blot). We used Neuroscience Labs for Lyme testing, which looks for Bb cytokine response and Bb inflammation response. It is not an antibody test like the Western Blot. With the Neuroscience test, she was negative for cytokines but positive for inflammation to Bb. The doctor said this suggests that she is not
  5. I was thinking the same thing. How could they possibly figure out if the spraying is controlling the spread of TBI? I am going to research the pesticide and if it seems safe, I probably will have them spray my yard, as I happen to live in one of the zip codes they are studying. Although I wonder if we may be disqualified because we are already being treated for TBI. Nonetheless, with the way our luck has been going, I wouldn't be surprised if we got the placebo spray....
  6. Our LLMD treats Bartonella with a pulsing therapy of 21 days of Rifampin Mon-Fri, Azithromycin Sat-Sun. then we break from this and do 7 days of Flagyl. And repeat the whole thing for I'm not sure how many months, as we are into month 4.
  7. My DS14 is starting week 5 of IV abx. This week he will start Rocephin. I hear a lot about Rocephin causing gallbladder issues. Anyone have this experience?
  8. DD12 had an OAT test recently which showed the presence of C-diff. How is this treated? She is about to start back on Babesia treatment (Mepron, Azith, Bactrim) and we'll add in Minocycline for Lyme in a few weeks.
  9. We started treating Lyme and Co-infections last May for DS14 and DD12. We started with Babesia treatment - 5 months of Mepron, Azithromycin, Tindamax (and began treatment with Alinia). My daughter tested positive at the time for WA1. Then we moved onto Bartonella treatment (Rifampin, Flagyl) at which my daughter started to really decline. Her symptoms are so debilitating that she no longer is attending school. Just found out from the doc today that it seems Babesia has reared its head and must be treated again - this time for 8 months. Seems Bactrim along with Mepron and Azith needs
  10. I live in MD and here it is called Home and Hospital Teaching. As long as a doctor writes a letter of medical necessity, our school system has to honor the reqeust. Both my DS14 and DD12, both being treated for Lyme, are getting tutoring at home right now. Getting them well, for us, has been more important than worrying about them being in school. Also, I think it is helping to keep the infection exposure to a minimum right now. Certainly being at home helps this.
  11. Have you considered parasitic worms? Sorry to gross you out. We currently have our (non-PANDAS) daughter on a 6-week parasitic protocol ordered by our LLMD. She was itching like crazy, usually at night when parasites are most active.
  12. OK, at the risk of sounding really stupid, I have to tell you I don't know exactly why my children are taking Methyl Guard other than the fact that my doctor tells me to give it to them (and they both have MTHFR mutations - see my earlier post). I am on overload and don't always ask the doc specifics about her recommended supps. Nor do I know if it helps since we have added so many things in simultaneously in the last 9 months of treatment.
  13. Both my DS14 and DD12 take Thorne's Methyl-Guard 1x/day. They took it 3x/day for the first month of usage.
  14. My DS14 and I test compound heterozygous for mutations C677T and A129C on the MTHFR gene. I cannot explain it well, but it puts us at much higher risk for developing cardiac disease (among other issues) because we do not "methylate" well. I know some others will chime in with much better explanations of methylation issues. LLM always explains things concisely on this topic. My son and I take Methyl B12 supplements 3x/week (I take injectable, he takes compounded sublingual liquid).
  15. Sounds like she could be reacting to illness around her. We started calling my DS14 "the Canary" because he seems to detect illness in someone before they do. He will come home from a friend's house and say that someone must have been sick in the house because his "brain feels puffy." Amazing.
  16. Have you ruled out Lyme and co-infections? Babesia often causes low WBC counts. My son's WBC is usually around 2.9. LLMD says its from the Babesia.
  17. My DS14 (PANDAS, Lyme and Co-infections) and DD12 (Lyme and co-infections) have been taking LDN for 5 months now. I have not seen any side-effects. I cannot report on whether or not it is helping, but I have no bad side effects to report.
  18. We have known for 1.5 yrs. that my DS14 has an immune issue, as he was dx with PANDAS and then Lyme, Babesia, Bartonella. But 1 yr. ago his IGG levels weren't "out of range," although they were still low-normal. Now they are low out of range. Can Lyme treatment (we're 8 mos. in) suppress immune system even more and cause a Primary Immune Deficiency? Here are his results: IGG, Serum 757mg/dl (range 842-2013) IGG1 491mg/dl (range 315-855) IGG2 130 mg/dl (range 64-495) IGG3* 18 mg/dl (range 23-198) IGG4 47.3 mg/dl (range 11.0 - 157.0) IGG TOTAL 803 mg/dl (ran
  19. My DD12 is interested in raising some money to benefit this program. Is anyone familiar with the program?
  20. I don't think it sounds too aggressive as long as you are supporting the body in other ways to keep the toxicity down. Milk Thistle for liver support; probiotics for gut support. I'm sure others can chime in on other helpful supplements. My son takes quite a cocktail each day. This week a typical day's meds include Minocycline, Valtrex (anti-viral), Rifampin, Diflucan, Nystatin, Mycelex (for yeast in mouth), Low-Dose Naltrexone (for immune boost), Paxil (for anxiety). It seems like a lot to me, but he has been on this protocol for many months and has shown no signs of overload. Our LL
  21. We call Tindamax the "Angry Pill," as it causes my daughter to be very mean and irrational, which is unusual for her. I was glad to read the posts and know that others have had similar experiences.
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