searching_for_help

How much and how often are you dosing? We have an adult dd, but she is severely underweight. We're willing to try anything.

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 for her. The most worrisome lab for that doc was her low sodium. It's been running between 120 - 126. She eats and drink LOTS of salt, plus plenty of the healthy Real Salt, and even takes sodium tabs to help with her urinary frequency. Makes no difference at all. Her weight is dangerously low, and I monitor her caloric intake. Her anxiety seems to be causing her to literally waste away. It's so hard to get anything done with her health like this. The ozone doc DID say that ozone would not be any cure-all, but it could help somewhat. We'll take any help we can get, but she's just not in a good enough place to get it done now. Please let me know if your son has it done, and how he responds. I hope this is something that can be helpful for him. (Note: he'll have to have his G6PD tested before they'll do it.)

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'll have her mumps and measles titers checked out of curiosity. Aside from the fact that Merck is being sued for the vaccines not being as effective as they claim, so it would be a good idea to know that, also.

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!

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.

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

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.

How are you today? I've been worried and hope things are better.

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.

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 Swedo. I wish you the best.

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 Comcast router/modem, he would come out and say he didn't know why, but his head hurt. I was shocked, as he NEVER mentions any ills unless I quiz the heck out of him! Our doctor is a general practitioner, but her adult kids are on the spectrum, and her son had the same issues, and he uses something to sheild it and it works for him. You might want to try mercola.com, I'm sure he has some info on dangers of wifi. Plus we already know too much cell phone use causes brain cancer, and of course no one believed that when the idea first came out... As far as avoidance, there are lots of docs posting how to avoid it. Some people put their router on a timer and shut it down for the night for a break. You should never have a tablet, phone or computer, or even your alarm clock next to your bed. Some people that get sick from it go so far as hardwiring everything, instead of wifi, like in the "good ol days"! Yes, the canary in the coal mine is definitely real. Such as our mold issue. About 25% of people have the genetics where they don't clear the mycotoxins, so you can have a room full of people, and only a few will get sick from it. Thankfully, with epigenetic studies, these people aren't labelled "hypochondriacs". Actually, I'm the the one that made the connection with our dd. She didn't know why she would get sick, but she finally realized after years of getting sick that mold was the trigger. There are many sites on how to protect yourself from EMF. Hard to know which ones are legit... you might want to try a European site, they seem to be much further ahead of us when it comes health issues.

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 different kinds, and usually the hallucinations don't happen until early morning. She's the "canary in a coalmine"...she has the dreaded HLA genes, so I'm wondering about other toxins. We're pretty sure there is no mold down there, as mold usually causes her migraines and vomiting, for days, and this is not occurring. Anyone else dealing with PANDAS/PANS in a high radon area?

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.

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 having issues falling asleep, but sometimes the over-the-counter Kroger Nighttime Sleep-Aid is helpful. (Doxylamine Succinate tablets, 25mg.) She has to time it just right for this to work. She's tried all the other stuff, melatonin, GABA, magnesium, valerian, etc. and sadly, those have never worked. I hate using meds, but we've had no choice. Another thought, parasites. They are active at night. Testing isn't reliable. Both my kids were tested - negative. But I listened to a Parasite Summit and decided to try a product they mentioned and we've ALL been passing disgusting things! I know parasites can also depress the immune system and steal important nutrients, which affect everything! Anyhoo, sorry for the disgusting topic, but the supplement we are using is called Mimosa Pudica through Microbe Formulas. We also started slow using l-ornithine to clear ammonia, as parasites are known for excreting ammonia, which can screw up the brain. And you have to keep the bowels moving. DD and I have always been severely constipated, but OxyPowder (it's a form of magnesium) works fantastic.) I hope you and your son are able to find some relief soon. We certainly know how horrible this can be.

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 to find answers.

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 doctor's offices to charge what they want, and the check end up with GPL anyway. Anyone else run into this problem? I feel like I'm missing something.

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 think it's downright criminal to give anasthesia without checking B12 levels first! I hope this helps in some way. MethylB12 infections are easy to give, and you can get them from some compounding pharmacies. Please keep us updated.

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/

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 be Bart they looked it up and agreed. Her holistic nurse practitioner thought it was Bartonella, and she has had some Lyme and coinfection training. Sooo, I (mom) did test positive for Lyme, but had Bartonella also before dd was born. I really don't know if I had Lyme then or not - we hike a lot and have deer in our yard, so the Lyme itself could have been a later thing.

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 closet wall directly behind that shower. Ugh... it's awful. But yes, Lyme, coinfections, strep, mycoplasma and on and on can affect our kids. Even food allergies and nutrient deficiencies, yeast in the gut. I'm sorry, because I know how overwhelming this can be and how our medical community isn't very helpful. Our dd had LOTS of strep as a kid, has probable Lyme and definitely Bartonella. We know her gut is a mess from all the antibiotics (abx) she had as a kid. Personally, I'm thinking all the antibiotics (destroys good gut bacteria) and Tylenol (wipes out your major antioxidant, glutathione), she had as a kid weakened her immune system (gut), and also Bartonella suppresses the immune system, plus throw in all her nasty gene snps that keep her from ridding her body of toxins from things like Lyme, mold, environmental toxins, etc, and you end up with this storm, this awful storm. Our dd does not have tics, but it seems to me that many do well to get rid of gluten. (I'm sure others will chime in here.) I'd also look into treating yeast overgrowth in the gut. Also, it would save you time and years of if you just break down and find a PANDAS friendly doctor, even if it means driving a long way. Seriously, unless you're very lucky, you'll get no where with a regular doc and it's just not worth it. Our dd has lost over 10 years of her childhood to this horrible disorder, and she is now 23 and we are STILL not through it. But we spent years trying to find local docs to test and help us. They would send us to specialists that were no help. If there isn't a pill or procedure for it, they seem clueless. Hopefully you will get some opinions from others. I know some of the top PANDAS docs want to go straight to IVIG or PEX. It's good to find someone who is willing to look for what exactly is going on, as the IVIG and PEX don't always work or last. I'm not saying not to do them if you have insurance coverage, but just be aware that if it is something else, you need to have a doc willing to look into it. I prefer a functional medicine doc, but that is my preference. Once again, the air filter makes me think mold might be a contributing issue... Good luck, I feel for your situation and hope you find help for you child soon. And major hugs to all the moms going through this.

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 system are causing, or contributing to, a person's disease or condition." "It is thought that the complement system might play a role in many diseases with an immune component, as well as diseases of the central nervous system." You could always print out the page from the link below from Shoemaker's site (surviving mold) and take it to your doctor to see what she thinks. It describes the tests he looks at. We had some done through Labcorp and some through Quest. If your doc is interested there is more info on his site. Here is a brief description of each test: https://www.survivingmold.com/diagnosis/lab-tests He isn't saying that all these test indicate mold - there are other issues that can cause these tests to be out-of-range. I hope this is helpful. I know how frustrating and time-consuming all this can be!

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 of our system. (Sorry, maybe someone else will jump on and explain.) Regular docs don't seem to be up on this, and are very limited in understanding what tests should be run.

I have acetyl l-carnitine here. Does the "acetyl" kind work the same way?

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 urine mold test was negative, but her other tests indicate some kind of biotoxin issue. Everything down there has whitish spots...mildew or mold? I have know idea how to deal with this. Just curious, did the symptoms start after a couple of days of starting it? She is VERY moody, on top of the throwing up. Her eating disordered thinking is definitely back, and I wish I had someone to take over while I run off for a while... Twelve years of this is enough for all of us...

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. My question is, for those who have done the binding agents for mold/biotoxins - is it normal to have flu-like symptoms like a herx a day or 2 after starting, or does she actually have the flu? I'm not sure what to think, but I'm NOT giving her another dose until things calm down.