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Everything posted by SSS

  1. ALL the meds the PANDAS/ PANS kids get a trial/ protocol are serious business: antibiotics, anti-psychotics like Risperadone/Abilify which take over neurotransmitters in the brain, antidepressants especially under 18 yrs. old, IVIG's with pools of thousands of blood donors, The Alzheimer disease drugs, steroids which can shut down immune system and adrenal glands, etc. etc. We know that. It's a serious condition. I was going to suggest instead of Mepron for babesia (malaria like disease) Malarone (prescription, but tolerated better, I think) or Cryptoleptis herb tincture from Woo
  2. I am curious if they gave you a relapse percentage when going off/ completed? It's not a protocol I can get behind, having fought off parasites already *shudder* I know there are avenues we've taken that aren't popular with everybody, either, totally not judging. Last time I heard, it was pretty expensive, too. But I am thrilled for your progress! Gosh this PANS journey has a lot of twists and turns, and is not a poor man's disease :-(
  3. If I can add one thing, it is that our vivid personal experience has been: when you are 'trending down on the psych meds' (and by your description, I am assuming you mean Risperadone/ Abilify) you must go very, very, very SLOWLY to taper off. We almost have my dd9 off Risperadone (and YES, I loathe the side effects of this drug). We are treating Lyme/PANS again with substantial improvements, but we have had to go extremely slow weaning off risperadone at the same time. Almost off of it, but frankly, (and I have emotional scars from the time we went too fast, it was soooo awful
  4. Rachel, is that it for antibiotics/ all he's been on since Myco/ Strep/ PANDAS? Just to give you an idea, when I was being treated for Lyme, I was taking 2 ml of Bicillin injections 2-3 times a WEEK, and I weigh 100 pounds. (plus I was taking an oral cyst buster 2 weeks on/ 2 weeks off) My point: doesn't sound like enough antibiotics to kill high Myco P infection or rampant strep. Just my opinion from the bleachers out here.
  5. Continuing treatment is based on symptoms. It would be lovely to have better Lyme, Bartonella, Babesia testing, and by better I mean: 100% it's there, 100% it's gone, like they do for cancer, they can get remission claimed with certainty. We don't have that kind of testing with Lyme disease- which is why it's so important to be treated by a Lyme literate medical Dr. or Natural Practitioner. I'll go further to say it's equally as important for the Lyme patient and/ or caregiver to become educated themselves about the disease, and with that knowledge, listen to their own intuition about t
  6. Hi Rachel, The Igenex WB does need a Dr. signature. IVIG antibodies stay in the system for 6-8 weeks, so testing would not be ideal at this time. Low dose IVIG is not the PANDAS/ PANS IVIG- reports are for some the low dose can make 'it' worse, but I understand for immune deficiencies low dose is what is prescribed. Have you had the Myco titers re-drawn (away from IVIG) to see if those titers are going down? I am sure you've read here all the experiences of difficultly ridding high Myco often needs combo antibx, and often Lyme is found as well. Sorry if blunt, it's how I write- also,
  7. Yeah, it's like you can't be 'a little bit pregnant' However, some may carry Lyme with little or no symptoms, their healthy, unencumbered (no other infections pulling it down) immune systems handling it and keeping it in check. But it's scary to carry, IMO, because a stressful event could cause a crash :-(
  8. kt, not sure when this blood test was taken, but IVIG makes all testing rather null and void until it's completely out of the system (the donor antibodies) which I believe is a full 8 weeks...
  9. Rachel, which Lyme tests do you have copies of? Igenex Labs is considered the best, and what to look for are which bands are positive (marked by *) and which bands are IND (which means detected) I believe a Igenex Western Blot test is $200. I am not talking about co- infections here, just the Lyme.
  10. Well, I'm not a Dr. (of course) but when I presented PANDAS to our then DAN/MAPS Dr. (I had pages of written summary with our history about why I thought my dd, then 4-5 yrs. old, had PANDAS. Basically, she had all the symptoms, except overnight transformation, but yes waxing and waning.) I used this web page for symptom list: http://webpediatrics.com/pandas.html Anyway, that Dr. did know about PANDAS (and really, any DAN/MAPS Dr. should) and we did a trial of 1 month Azithromycin (full dose 6 days a week) and daily ibuprofen, with me taking copious notes, report back in 4 weeks. Abso
  11. I can relate to a lot of what you wrote. I can't write a lot, just a few things- Has your child ever been on an antibiotic trial for PANDAS/PANS? Please make sure he gets some before/ after Tons. surgery. I 2nd the suggestion you need to find a PANDAS specialist, or a Dr. who has at least treated it. You may also want to do the Cunningham test from Moleculera Labs http://www.moleculera.com
  12. *Thanks-- we are in dry northern CA, and dd9 has no seasonal allergies. Are you saying your child is in a flare, and asking what is typically done when that happens? If your child is on prophylactic antibiotics as a precaution, but then is exposed and starts a flare, usually full dose antibiotics are then administered, or child is throat swabbed and checked, perhaps given another antibiotic. Ibuprofen is used for inflammation, or another anti- inflammatory. Our case is a bit more complex, as we are dealing with tick borne infections- Lyme disease. We had a long break off antibiotics and
  13. I will say watch out for constipation, as it is a binder. FWIW, dd9 and I did not herx at all with Cholestyramine.
  14. Thanks Nancy, excellent points. I guess the good news is it doesn't last too long now (we've had ALL day before) and I can get her out of it fairly shortly if I'm on top of my game. It's just SO intense when it comes on for her, and I'm tired. My DH thinks it's from holding it together all week from the guests being with us (same with after school time, holds it together there.) As far as a guest carrying infections, I'd bet a high dose IVIG that YES, on that one. One particular person, who went on all the same camping trips and hikes as me in my youth, plus 100's more after, infected cat
  15. Okay, we've been holding steady on antibx protocol targeting Lyme, detox, etc. and the 'have to do/get this NOW, make it happen anger OCD' had left. It also includes kicking furniture and doors. Suddenly, it came back yesterday, and this morning. No protocol changes. We did just have guests leave after a week visit (thank God). She held it together quite nicely for them. Any ideas? Bartonella coming out? Or just the fun PANS ride of just when you think you can relax....bam! Seeing a new PANS specialist next week, too. Thanks.
  16. We pay for our healthcare in this country (US). My husband works for the largest US company, we pay a large chunk out of his check every month for PPO coverage, start every year with a new $2,500 cash deductible, which is usually paid by mid-February since everything including prescriptions is full price until $2,500 is paid, AND THEN, we only get 80% of every insurance approved Dr. appointment/hospital stay covered. 80%! Last year it was 90%, now 80%. Took dd9 to a leading neurologist in March, who I spoke to for no more than 15 minutes, who said: She has PANDAS. I can't he
  17. Flmom, Lyme is one of the most difficult bacteria's, as it has/ converts to 3 life forms, and different antibiotics target different forms. This link/ guideline is very helpful in explaining: http://www.lymenet.org/BurrGuide200810.pdf
  18. My PANS dd9 went back on antibiotics about 6 weeks ago (Biaxin, Ceftin, nystatin) after a very long break in treatment. Here's what is happening: improved intelligence, clarity, can sit and concentrate, calmer, OCD greatly, greatly diminished, dare I say nearly gone. We have brief eruptions of vocal tics/ sounds- maybe 2-3 times a day- I say it's die off. I'd try antibiotics for Lyme, with a test like that, and no previous treatment. You need a lot of detox measures in place, probiotics, clean diet to support.
  19. There is also a scientific study linking the infection Toxoplasmosis to schizophrenia.
  20. **I had put (almond or coconut) for almond or coconut based yogurts, which are casein free. Not the casein, the strep strain. I could swear by it, happens every time. We've been GF/CF for 5 years with 2 trials off GF/CF, which did not go well.
  21. A very high IgG does not necessarily mean past infection, the prescribing Dr. probably explained this to you- glad you are seeing improvement, go with it.
  22. It HAS been an issue for my dd, and I've kept trying various yogurts (coconut or almond ones) because dd is casein free, loves yogurts, and I wanted another source of calcium. Every single bloody time I see a reaction, as hard as it is to believe. Lifeway brand kefir is the only one I know without strep strain (but has higher sugar content.)
  23. Or, it could be against your religion, or, you could get titers pulled to see if he still has immunity. Congratulations on his health and off to college! All your hard work paid off, wonderful to hear-
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