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Everything posted by searching_for_help

  1. How much and how often are you dosing? We have an adult dd, but she is severely underweight. We're willing to try anything.
  2. msmom, Sadly, my dd was unable to do the IV ozone. We drove nearly 2 hours to do it, but when they saw her labs they were concerned she was not healthy enough to do it. (Of course, we weren't warned of there being any glitches about that... ugh.) DD is almost 27, and has had this since she was 9 years old. She was crushed, as we don't have much left to try. I had to hold onto her hand while I drove home, she was so distraught over it, that she was hopeless and wanting to die. My fear was she would try and jump out of van. It was a horrible day. There have sadly been too many of those days
  3. Interesting... I have no idea about the titers, but my dd gets VERY spectrum acting when feeling her worst. We even paid for an evaluation to rule out Asperger's. The diagnosis from the psychologist was "PANS", but whenever we discussed her behaviors, the woman would repeatedly say "That sounds just like autism". I think there was one test my dd took that made her think more PANS, but she clearly thought there were some overlap in spectrum behaviors. Dd developed normally also. Then she would hit these rough patches where OCD and anxiety would rage their ugly heads. So now I think I
  4. Thanks so much for your response. Did he have IV ozone, or another kind? Did you have to pay out-of-pocket for ozone? It's interesting - I've heard several people mention the HD IVIG not being effective, but the more frequent ones being helpful. Glad to hear your son is having good success!
  5. Curious if anyone has tried IV Ozone, and if so, did you see any benefit? PANS dd has so many different issues it's like whack-a-mole, and nothing seems to help for long, if at all. (Bartonella, Marcons, Mold toxicity/Ochratoxin A, parasites, especially high in Blasto, etc, etc) Wondered if the ozone might clear out several problems at once.
  6. This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F1179573519832014
  7. My daughter has some similar experiences, so I think I have an idea of how you feel. I'm just glad you are feeling a bit better, and hope this all calms down and you can feel less anxious, soon.
  8. I'm not sure this would be a side effect of Ibuprofen, but I agree with the posting above - 4 to 6 hours. Husband mentioned that activated charcoal might help, if it's really a reaction to Ibuprofen.
  9. Please ask your pediatrician to go to the Pandas Physicians Network. (www.pandasppn.org) It's a site for and by physicians. Your ped can also contact Susan Swedo at the NIMH. They are there to help physicians know how to treat. I feel for your situation. Been there, done that. We had terrible experiences with psych wards, but sometimes that's all you can do until you can find help. Please demand that they run some kind of test to see if there is brain encephalopathy. Sadly, they probably won't, so you'll need to get some docs in place willing to look at the PANDAS/PANS info or contact Swe
  10. When we are away from home, it never happens. I'll be calling for another radon test today. Any functional or integrative medicine doc will say YES to EMF sensitivity. If you get on Pubmed, research shows different things, but since I spend every spare minute researching health issues, the one thing I can tell you is research outcomes are determined by whoever funds the study! That being said, my son, who is probably autistic, doesn't say much, NEVER complains, we have a terrible time knowing if he is uncomfortable, etc.,... when we moved here and he would go into the room with the
  11. Our adult PANS dd is having auditory and visual hallucinations, ONLY at night, and ONLY in her lower level bedroom. These did not occur in our previous home. Our current home had very high levels of radon when we purchased it, but a mitigation system was installed. We are in the process of having it checked to see if it is working properly. So, I know hallucinations can be a part of PANDAS/PANS, but her's are ONLY at night, and have only been in this home and only in the lower level. Has anyone else had something similar going on? We've ruled out her sleep meds, as it occurs with differen
  12. Here are some links: http://drjaydavidson.com/removing-parasites-fix-lyme/ https://www.amymyersmd.com/2017/05/10-signs-you-may-have-a-parasite/ https://shop.microbeformulas.com/collections/frontpage/products/microbe-formulas-mimosa-pud Concerning the urinary frequency: You might also ask your doc about a trial of Desmopressin (prescription) and/or ask their opinion on sodium chloride tabs (salt tabs, over the counter). They don't always work for my dd, but but she finds them to be helpful some of the time.
  13. So sorry. My dd has dealt with sleep issues for 15 years. But things are somewhat better now. We've tried lots of both herbals and meds over the years. Her doc recently prescribed her Trazodone 50mg. She started with 1/2 a dose and worked up. More than that can cause headaches in some people. This med will not help my dd GET to sleep, but once she is asleep, she is resting more deeply than she has in all these years. (But she still has to get up multiple times due to urinary frequency, but is able to fall back to sleep.) So in that sense, this med has been wonderful. She is still hav
  14. I am unable to open the links! I remember reading somewhere that the amount of mercury in the vaccine was much higher when I got it, back in the early 90's. Does anyone know more about this? Also, when I received my first Rhogam shot, I spoke with a hospital employee who mentioned she had got the shot as well. Many years later, I heard her son had committed suicide, and this was right around the time my dd started having major issues. The shot connection has always been in the back of my mind... More research needs to be done. Thanks so much to whoever worked on this. We need
  15. Getting frustrated. Got a bill from GPL for OAT test. When we had it done through previous doc, it costs $300. (Still does, I called.) We have a new doc, and now GPL is charging over $600. GPL claims it's the doctor's office that sets the price, but the doctor's office says that GPL sets the price! (Which makes sense, as the money will go to GPL...) I contacted GPL via e-mail and they want to know who the prescribing doc is ??? I'm getting very frustrated and won't pay this bill until I can find out what's going on! It seems to me that it wouldn't be very ethical or make any sense for do
  16. If nitrous oxide was used during her dental work, that could be the problem. For anyone with low B12 levels, it's downright dangerous. I think (but don't have time to look much up right now), that those with MTHFR mutations don't tolerate the nitrous oxide well either, and many ASD and Pandas people have the snp. If your doc is unaware of the B12 and nitrous oxide issue, there are plenty of reliable resources that show this. Also, low B12 causes psychological as well as physiological problems. http://www.b12-vitamin.com/anesthesia/ Personally, after reading some of the links, I thi
  17. Hope these are helpful: Mood disorder with mixed, psychotic features due to vitamin b12 deficiency in an adolescent: case reporthttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC3404901/ Vitamin B12 Deficiency and Brain Healthhttp://kellybroganmd.com/b12-deficiency-brain-health/
  18. I have tested positive for Lyme. A doc thought I had Bartonella a few months before I became pregnant with dd (the one with PANS). I had gotten a cat scratch and my lymph node in that arm was enlarged. Due to dd's anxiety and Pandas/PANS issues, I had wondered if it could have been transmitted to her at birth, and about a year ago (but she's now 23) she broke out in the straie Bartonella rash - looked like dark reddish purple streaks on her, and they would last a few days and appear in another part of her body. Regular docs had no clue (and didn't seem to care), but after I suggested it might
  19. You mentioned an air filter in his room possibly helping. Any chance at all there might be mold in your house? Or at his school? We, and others on here, have had our kids react to mold. My daughter (dd) and I have the HLA genes where we don't detox molds and it makes us sick. I get more of the regular symptoms, but dd gets more of the psychiatric - more anxiety, OCD, etc. We react differently to different kinds of mold. Mold is tricky because it can be in your walls from a leak and not always visibly seen. (Our worst place is behind a shower that leaked - I discovered black growth in the c
  20. I think our insurance covered most of those tests. You'll have to check and see. I don't really know if I'm explaining things correctly and am hoping someone else will chime in, but the C3/C4 test I referred to is a "complement" test. Here is some basic info I copied: "The complement system is a part of the immune system that enhances (complements) the ability of antibodies and phagocytic cells to clear pathogens from an organism." (Our dd's C3 was low, C4 high.) "Complement tests, most commonly C3 and C4, are used to determine whether deficiencies or abnormalities in the complement
  21. My dd was diagnosed PANDAS/PANS by 2 top docs. Her CRP is always low, as well as ANA and other tests. That always confused me, and I couldn't figure out why all of those inflammatory marker tests were normal or low. Now her doc has been doing other testing for biotoxin illness (mold, staph, Lyme, etc.) such as TGF-b1, VEGF, MSH, CD-57, C3/C4, and dd's test results are very indicative of that being the issue. (We know she has Bartonella, probable Lyme, and has the HLA "dreaded" gene...) My husband tried to explain this to me, but the testing is showing inflammation in a different part
  22. I have acetyl l-carnitine here. Does the "acetyl" kind work the same way?
  23. Thanks so much for sharing your experience. Our doc wanted the pure form of cholestyramine, without all the food dyes and additives. She said that had to be compounded, but something about they have to order in such a large amount that it makes the price terrible. My husband is in the basement cleaning as I type. As soon as I came home my nose and head started hurting - I need to be the one going through junk down there, but I have 2 of the HLA genes for mold myself, but dd has the "dreaded" multisusceptible one, and rotten methylation snps. I'm not positive it is mold affecting her - her
  24. OK, dd's doc suggested Cholestyramine in pure form, but due to the difficulties of getting that (has to be compounded and can be very expensive), we settled on a product called BIND by Systemic Formulas. She is supposed to take 2 pills at night. Soooo, she took 2 pills Saturday night and again Sunday night, and today she spent all day throwing up. Her whole body aches and she is miserable. For those who know our case, she has an eating disorder, so the LAST thing we need is a day throwing up. It also ramps the "eating disordered thoughts", which makes it hard to get her to eat again. M
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