Jump to content
ACN Latitudes Forums


  • Content Count

  • Joined

  • Last visited

  • Days Won


Everything posted by SSS

  1. I know my dd9 won't eat fermented vegetables, and I don't give yogurt with the strep strain probiotic (is cultured yogurt like fermented? Obviously I've never cultured yogurt.) But, glutamate is an issue here. If I supplement Gaba, bad effects. My dd9 is back in treatment, therefore I almost have her off Risperadone (tiny, tiny dose left), but recently I tried Lamictal, because frankly I was scared to go off a mood stabilizer all together, AND, lamictal modulates glutamate. Long story short, I decided not to go with Lamictal, but the small introduction I did with it, I really saw a difference with glutamate being modulated/ down graded. Now, recently had amino acid test results, it says glutamate is fine. I don't get it. I have an appt. w/ a PANS specialist in a few days, going to bring this up, but the other thing for glutamate blocking is an Alzheimer's drug, I don't want that either. *sigh* so I ordered PharmaNac again, since need detox anyway, and it's also a cyst buster according to Buhner, and we are back in Lyme tx. And it stopped skin picking before. Sorry so long. Anyone out there, need glutamate info too!
  2. ** sorry, I missed this earlier. Some thoughts: The Lyme and co- infections are eradicated enough so that the immune system can take over/ keep them in check. Complete lifestyle change probably necessary: reduced/ low stress, very clean healthy diet, w/ no inflammatory triggers, no alcohol, exercise consistently, 8-9 hours sleep at night, rest when needed, perhaps meditation. Dr. Horowitz's book 'Why Can't I Get Better' talks about all the bodies systems, like thyroid, gut, those need to be working. That's the idea. So, you get there, cruising along, and say you decide to take a longer prescription of steroids for some reason, the immune system shuts down, a sleeping spirochetes wake up. Or you go into major surgery, same thing. Could relapse. Is it really possible to kill every single tiny one? I have read a well known Lyme Dr. saying 3 years remission, home free. Personally, as an infected adult who had this going on for untold years, did heavy treatment, I will always, always have to take my health seriously, put time and effort into it daily. I'm still on some herbs, special diet, etc.
  3. Thank you for sharing that Deedee, I understand. It was our LLMD when we went back last month (after a very long break in treatment for dd) who asked we see a specific PANS specialist, hence our appt. next week. Filling out the PANDAS/ PANS packet/questionnaire for the upcoming appt., and looking again at a written history I put together, was enlightening. My dd also continues to 'ramp up' when exposed to illness, saw it this Spring when her little non-PANS sister kept getting different illnesses from school. But, she wasn't on any prophylactic or treatment antibiotics, etc. I find one of the most stressful and difficult things about this illness is just how much serious decision making is left on the Mother (and some Dads who guide the treatment decisions.)
  4. Dedee, if I can ask, since you've treated Lyme, and done 2 IVIG's- what kind of treatments are you looking for from Duke? More IVIG's? We went back to LLMD, back on antibx with improvements, but have a new PANS Dr. consult next week, not sure what they can suggest to us. Not interested in more IVIG's, since they were hit and miss, and we have underlying infections, which may never be fully eradicated. I wonder about glutamate blocking drug, but honestly, am too afraid to give my dd who is only 9 another heavy drug. Just curious about your thoughts-
  5. ktdommer, I thought about this thread today as we got the results back from ION test from Metamatrix/ Genova (the companies merged.) What a comprehensive test w/ all kinds of info., and insurance picked up a huge part of the cost. What I found very revealing was the amino acids part- we had tested dd through neuroscience for amino acids about 3 years ago, and I was not impressed- felt a bit like they were pushing their own product line, and the way the results lined up for us didn't really phase me, but today's results through Metamatrix/ Genova were very interesting- and, the test included a snapshot of yeast and gut bacteria (okay!), fatty acids, minerals, B vits./ MTHFR, metals if in blood, etc. We were in line on everything except 3-4 amino acids very low which I am finding extremely interesting, as they can affect neurotransmitters. Furthermore, d- lactate was sky high, I had no idea- major probiotic switch needed ASAP. I am too old in this now to think there is a magic bullet pill, but, hoping correcting new found deficiencies will help.
  6. It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive. To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office- we all need to make sure we have copies, and look them over, too.
  7. I can't write a lot, but I want to say 1 important thing: Trust Dr. B. You can have both PANS and Lyme disease. Underlying infections create PANDAS/PANS.
  8. I'm so sorry---- heartbreaking. One day at a time, but it's time to move and fight for her- you can do it. The good news IS that you know what is happening, and it's early. Early is HUGE. I think you are going to have to go down the PANS list to stop it: is it Myco P, the staph never cleared, different antibiotics to treat, short steroid burst, possible Lyme and co- infections, make sure her guts okay from recent antibx treatment. Sending good thoughts-------
  9. First ingredient Maltodextrin, so I say no. Here's something I copied: 'maltodextrin is just as bad, sometimes worse, as having sugar. Easily absorbed carbs like maltodextrin and sugar get into your bloodstream fast. If there is nothing for all that blood sugar to do (i.e. repair muscle-tissue, give energy), it will get stored as fat. Contrast that with real complex carbs from whole grains, which are broken down and absorbed slowly, and maltodextrin looks more and more like sugar.' There is also some info. about Maltodextrin and glutamate, don't really get that part tho. Now, if there is a feeding issue and someone can only drink, different. But as a good meal replacement, no. I'd rather feed a meal, give a vitamin if necessary.
  10. What about a high dose IVIG? With all the doctors your daughter has seen, no-one has suggested this yet?
  11. Hey I'm not saying it'll take weeks, just giving you the party line ;-). (technically) Yeah, it's hard I imagine at that age/ peer pressure/ you're not there- maybe he can pack fun snacks to take with him he doesn't normally get (Udi's muffins, GF/CF pretzels) and say he has allergies / gets sick if he doesn't stick to it? We are attempting a long day trip out tomorrow on a boat that serves food- I dread all the food take along packing. One thing that keeps me strict about it 100% the cost! Hey, I'm shelling out big time on my grocery bill, not worth blowing it.
  12. Dairy takes 3 days to leave the system, gluten is said to take a lot longer....weeks.
  13. ** I would not treat. Congratulations to you and rowingmom on your DS's graduations! I am happy to hear how well they are doing :-)
  14. How old is your son? Honestly, that's a super hard question to me. My youngest is 7, and is 'healthy and normal', as you say. After what I've been through with dd9, I don't want to rock dd7's boat to save my life. I don't know, I think it would kill me. But, at 7, she has hit every milestone with flying colors, successful at school and social situations, etc. Our LLMD's have said: no symptoms, no treatment.
  15. (copied) there are three known ways that lyme disease can be transmitted- via a tick bite, gestational, or through breast milk. in an infected mother, the borrelia burgdorferi spirochete can cross the placental barrier, infecting the fetus with lyme. jones reports that the transmission is simliar to that seen in gestational syphilis cases. in a case study of 102 children with gestational lyme, where the mother was either untreated or partially treated for lyme, 66% reported a difficult pregnancy. 41% breast fed and all the children in the study improved with appropriate antibiotics. some of the most common symptoms of gestational lyme include: hypotonia (floppy baby), irritability (accompanied by impulsivity), cognitive problems including learning disabilities and mood swings, fatigue and lack of stamina, pain, low grade fevers, pallor, sickly, and dark circles under the eyes, arthritis or painful joints, unspecified rashes, GERD and vomiting with coughing, frequent URI and otitis, noise, light and skin sensitivity, eye problems, developmental delays including language and speech problems, and more. about 10% of cases presented with symptoms consistent with the autism spectrum. in one study, pregnant women with lyme who were treated with 2 different antibiotics throughout the duration of their pregnancy had no reported presence of lyme in their babies. 25% of those treated with only 1 antibiotic had children born with lyme and 50% of mothers who were taking no antibiotics had children born with lyme. in a different study, in a mother being treated for her active lyme, 85% of newborns were normal. in those not receiving antibiotics, 33% of neonates were born normal. however, there were many adverse events including miscarriage, stillbirths, perinatal death, congenital anomalies, sepsis or chronic progressive infection. women who also had babesia need to take mepron to help prevent transmission of babesiosis. if born with congenital lyme, children need to be treated immediately to give the best chance of eliminating the infection and reducing the potential for long-term damage. jones states that kids fare best with agressive treatments that last for a sufficient duration. live spirochetes have been isolated from breast milk and nursing women with active lyme need to be treated with appropriate antibiotics in order to prevent disease transmission. many mothers infected with lyme are unaware of their status, and subsequently do not know to seek adequate treatments. lyme symptoms in babies are often misdiagnosed or overlooked, leading to late diagnosis and treatment. the longer the child goes without being appropriately diagnosed, the more severe and complicated the clinical course.
  16. NancyD there is a recent post on Lymenet under medical about an 18 year old congenital Lyme/ PANS who recently had a complete turn around with IV antibiotics.
  17. I read 'The Nurtured Heart Approach', too, probably from an old recommendation from qannie47. It did open my eyes to a few things, and I am now aware to speak more to my dd, draw her out and notice and compliment her when things are smooth. I'm not explaining it right, but it's a salient point about helping their low self esteem, build them up on 'good' attention, every day things.
  18. Oh Ktdommer, sending good thoughts and prayers--- hang in there---- I just wanted to add something to Original Poster: My dd's OCD is also a changing idea on what she 'must have'- there is no way in heck I am buying or purchasing her the item she is currently obsessing on, no matter how crazy she is making me. When it was bad at one point, I said: Ask Santa Claus! Put it on your Christmas list! Well guess what, we've had stacks of compulsive Christmas lists written up (in July.) No, I'm not mailing them! I tell her. The law is you can't send until November. I think she refuses to acknowledge who Santa really is because she wants to keep her imaginary sugar daddy idea alive. Anyway, stop buying him things. You'll need your money for PANS treatment.
  19. YES, PANDAS/ PANS kids are that obstinate. Yes, they will rule the house. Yes, when mother tries to point out correction (or common sense?!) in the midst of child's anger will get yelled at with 'you think I'm stupid' 'you hate me' By the way, my girl is an angel at school. Yep, wins awards for good behavior. I can't really give advice, except the book: 'The Explosive Child' I will say, if I may, you may have to follow through with this child and stand up. Oh, it's brutal. And I'm a non confrontational introvert. But by golly, I have pulled out my ugly face laid it down, rage be darned- I have a few rules that will NOT be allowed (hitting, hurting). I could go on- it's very difficult. You very well may need further PANDAS treatment- with different infection medications, IVIG.
  20. We had the neurotransmitter testing (through Neuroscience, I think, it was a urine test.) It left me more confused, as it came back dopamine AND serotonin high, and we didn't get any clear feedback on what to do. I guess it did explain why every time I tried an expensive 5- HTP supplement, or Kavinace, dd had an immediate NO reaction. We also in the past had a separate amino acid test. In her particular case, it wasn't that revealing, everything mid- range-ish or not too dramatic, except taurine a bit high, as I used to give that particular one to her as a supplement.
  21. I agree with Q, I don't see any gut testing. The Metametrix (now Genova, they've merged) (the OAT test is from Great Plains) is very similar to Metametrix Organix profile, both being urine tests that measure yeast/ fungi, and bad bacteria in the gut, digestion, gluten sensitivity, etc. However, upon our most recent visit to Dr., there is a new test called Metamatrix ION test, that is first morning urine and blood draw before eating, and by golly it covers everything, yeast, bacteria, mitochondria, every vitamin and mineral, heavy metals (if showing in blood) amino acids, and more http://www.gdx.net/product/ion-profile-with-40-amino-acids-nutritional-test-blood
  22. Full dose Omnicef cleared up Impetigo for dd last Fall.
  23. That can happen after a high dose IVIG- so to stave it off, often a little steriod is given after the procedure, and hydrate, hydrate, hydrate days before and after-
  24. Congratulations on your son's high school graduation! Wow!
  • Create New...