searching_for_help

I think those mentioning nitrous oxide and the affects after for some is the right direction to look. I think that is the MTHFR c677t. I believe it can now be tested for by itself without having to do the 23andme. I'm pretty sure my gynecologist had just that snp run to see if I might be susceptible to high histamine. Regular docs aren't up on much of this, and B12 tests are very unreliable. MTHFR and nitrous oxide can also cause low folate levels - but don't add more "folic acid". It's not found in nature and you would need "methylfolate". I've read that MMA tests are better for B12 testing, but the results are different in that if the MMA results are high, the B12 is actually low. I remember posting a case where a teenager began to have all kinds of psych symptoms (OCD, anxiety, etc.) and even problems with his gait, and it was all due to B12 deficiency caused by an H. pylori infection in his gut. Sadly, most of these people just end up with prescriptions for psych meds that will NEVER treat their underlying illness. BTW, this boy was completely cured after H. pylori treatment and I think they gave him B12 infections, also. (Point being, low B12 and other nutrients can cause all sorts of behavioral changes...) PUBMED has lots of articles for Nitrous Oxide and MTHFR. You could print one out and take it to your doctor. If he/she doesn't look into it, I'd look into getting another doctor. This is a good link about MTHFR: https://www.psychologytoday.com/blog/the-integrationist/201409/genetic-mutation-can-affect-mental-physical-health

Ditto - I went ahead and bought it. Excellent speakers, although I wish they had been a bit more careful with the video - One of the docs mentioned PANDAS and then the video/audio went blank... Ugh! But there is certainly a lot of good info. Dr. Thomas gave some really good info on vaccines - which ones he thinks are safe and which ones to avoid. His website is wonderful.

sf_mom - wow, you wouldn't normally consider a tree falling on your house "good luck"! So happy your health and that of your family is improving. Dd's mold urine test was normal, and C4a high. It's strange that your C4a levels weren't high. I just wish testing was more accurate. It's frustrating not to know what we are dealing with, and dd is 23 years old and getting very tired of having her life put on hold due to all the psych manifestations of this. She's the one that got the great scholarship she can't use, while her friends have all graduated and moved on with their lives.

Thanks, llm. DD has been worried about the nasal swab, although we're not sure she'll be having it done. BTW - they just e-mailed me the actual test result for C4a. It's high, 4041, ref. range 0-2830 So has anyone done the RealTime urine test for mold?

Thanks, mama! Yes, she did other testing as well, although I assumed the mold urine test would be a big factor in determining treatment. It was done through RealTime Labs, which I thought was Shoemaker, and it was called the Mycotoxin Panel. It was all negative. She has not done the nasal staph swab. (Just curious, is it painful?) Strangely, the VCS test was "pass" for one eye and "fail" for the other! (I failed both..., I've got Lyme) I e-mailed Shoemaker about why her eye test would show those kinds of results, but never heard back from anyone. Here are some other things tested: % CD8/CD57+Lymphs: Result: 0.5 LOW (ref: 2.0-17.0) Abs. CD8-CD57+Lymphs: Result: 13 LOW (ref: 60-360) MMP-9: Result: normal TGF-b1: Result: 7920 HIGH (ref: 344-2382) MSH: Result:11 (Shoemaker says under 30-35 is LOW) (Ref: 0-40) VEGF: Result: <31 LOW (Ref: 31-86) Leptin: Result: 2.7 LOW (Ref: 4.7-23.7) Interleukin 1 Beta: normal C3a: normal (I don't have numbers) C4a: high (I don't have numbers, but am trying to find out.) 11-3-52B multi-susceptible 13-6-52B mold susceptible She's been diagnosed PANDAS by Dr. K and Dr. L, and has Bartonella, and possible Lyme. She's been treated with a lot of antibiotics, but none in a combo that I would consider helpful for the Bartonella. I'm just putting this out there to see what suggestions/thoughts, etc. you all might have.

Our doc wants dd to start either cholestyramine or Bind, due to C4a results being high. (C3a was normal). My concern is dd's urine mold results were negative, and from what I'm reading, elevated levels of C4a can be due to other things such as Bartonella (which she did have the rash this past spring). I realize it could also be due to nasal staph, but she has not been tested. I get a bit tired of docs like Shoemaker making EVERYTHING about the topic they are studying, (in his case, mold), when the test results can indicate lots of other things. Is it worth going through the time and expense of the binding agents if mold isn't the issue? Is the mold urine test definitive - I think we spent around $700 out-of-pocket for that test a year or so ago! I just wonder if the binding agents are worth going through if mold isn't the issue...

Yes, Dr. L's appointments are very expensive. I hope someone from that area can chime in with other ideas. We have a nurse practitioner who doesn't specialize in PANDAS, but is open to learning and she accepts insurance which helps greatly, but we are in the Midwest. I can have my daughter contact you when she gets a chance - just check near the top of the page for the envelope - when you get messages there will be a number by it. I know she corresponds with another PANDAS young man from the east coast, also.

Most doctors are clueless - but PANDAS doesn't just go away when you hit a certain age! My 23 year old is still struggling, and we know several other adults with the same problem. It's a shame the "P" in PANDAS stands for pediatric - because some of the top docs know it doesn't just go away. If you want to share the general area you live in, someone on here can direct you to a doc that can help. It IS harder to get help after 18 - this has been quite a struggle for us. But there is help, if you find the right doc. Also, finding what is triggering your symptoms is important - it's not always strep. Our dd has Bartonella and probable Lyme, but it was strep and viruses that really triggered her for a while. I'm so sorry you are going through all of this. If you need another young person to share your struggles with, my dd would be glad to talk with you, and she has a couple of other young adults with the same problems that she messages. Her depression and anxiety was so horribly severe she couldn't talk with anyone about it until recently, but she is relieved to have others to talk to about this disorder.

I think I've mentioned this link before. It's a continuing education course, and with this info out there, I don't understand why our kids don't get better care. Not so much that PANDAS is talked about, but that MANY "mental illnesses" are really caused by deficiencies, illnesses, etc. I thought it was fascinating. http://www.continuingedcourses.net/active/courses/course067.php

Dr. L and Dr. K diagnosed our dd with PANDAS (but technically, she is actually PANS - they seem to use PANDAS as the catch-all.) She has had the restrictive eating part for over 10 years. (She's 23). OCD, extreme anxiety, insomnia, urinary frequency, etc., etc, ugh... We did IVIG with dr. K. several years ago. It did nothing, but I do realize all kids are different. She almost died in January (one hospital suggested hospice - they don't believe in "forcing" adults to eat...) but ACUTE in Denver saved her. Strangely, her intrusive thoughts calmed down after a few days there, and we weren't sure if it was due to the plasma exchange she had had 2 months previous, or the low dose Clomipramine (Anafranil) they put her on. We're beginning to wonder if it was the plasma exchange that helped then, as she is once again going down the rabbit hole, and she is still taking the Anafranil. Her immune system just isn't working right - she had shingles about a month ago, and she was having drenching night sweats a few days before she started having the intrusive thoughts, food refusal, etc. It has taken 9 months to get about 50 pounds on her, and I can't believe this is happening again. We know she has Bartonella, too, (the rashes showed up about 3 months after the plasma exchange), but she was scratched a few weeks ago by a stray cat - and I'm wondering if that cat had babesia. (I'm not sure what else would cause drenching sweats.) The problem with plasma exchange is it usually doesn't work immediately, if it works at all, and often doesn't last. You are at an advantage in that your child is young and ED treatment centers will take him, but honestly, non of them are very good, except ACUTE, but that is only for the extreme cases. None of the places we've checked into believe in PANDAS. It's maddening. It's a totally different ballgame with an unwilling adult. (EVEN if you pay the money for guardianship - we found out it didn't mean much of anything. They still have to go WILLINGLY, which will NEVER happen in our case.) You mentioned his symptoms ramped up after a mild virus. Personally, I'd suggest adding Valacyclovir (an antiviral) to the mix to see if it might help. ANYTHING to stop the progression. Your child sounds clearly like a PANS situation to me, so you have to get someone to help you find what infectious process is causing the problem. In our case the Bartonella is probably hampering her immune system. We're working on it, but after years of this, we are all getting worn out. Another thought - IVIG, from my understanding, is not screened for things like Lyme, Bart, etc. Many PANDAS kids have Lyme and coinfections already, but since the IVIG wasn't affective for our dd, I kind of wish we hadn't possibly exposed her to other things. (Remember that Hep C and other things didn't used to be tested for in blood either...) But if I'm correct (someone correct me if I'm wrong), plasma exchange is not the same (plasma instead of blood cells) so would be safer. My heart goes out to you - it's so difficult to watch your child suffer, but hopefully with more knowledge about this problem out now, your child won't have to suffer as many years as our has.

Just a note: 2 top PANDAS docs that work with Susan Swedo diagnosed our dd - she had all symptoms of PANS but one, and her history follows, too. That being said, she had a NORMAL MRI. So don't assume an MRI will show anything. Personally, if we had access, I'd go with a PET or SPECT scan. I can't find any SPECT scans around us (Midwest), but I know the Amen Clinics have them. I think they show a lot, but I'm sure someone there could tell you about it.

I'm not sure that spinal taps always show the problem. Our dd had a spinal tap when she had a chest port put in for IV abx. The spinal tap was normal, but no one ever told us what they were even testing for. We KNOW our dd has Bartonella, as the streak like rash showed up a couple of months later, but this did NOT show up on the spinal tap. The same thing with urine catches - they only test for a certain number of things. They don't test for all that could be in the urine. Even mycoplasma testing - there are lots of different mycoplasma species - they usually only test for m. pneumonia. My point being our kids CAN have something wrong, but the testing leads us to believe there's nothing there, and the docs aren't trained to know what else to look for. In our case the spinal tap was NOT useful. Do not beat yourself up, this is NOT YOUR fault. Sadly, our medical establishment is in too much of a rush to brush us off and send us to the psychiatrist...

We did the urine test twice. Got totally different results, with child showing no change in symptoms. Her neurologist said the urine testing is not accurate, but I know mainstream med docs are against anything they haven't been taught, so I didn't take much stock in what she said either. She didn't suggest any other kind of testing. The gut affects the neurotransmitters. Has she had much gut testing, such as stool test or OAT test? My dd's gut is a mess, but with her eating disorder, I can't get her to change her diet much, and she LOVES sugar, pasta and cheese. I'm more concerned with her getting her weight on at this point. That said, we resorted to pharmaceutical meds back in February. We THINK they helped, but not positive due to her doing IV abx for Lyme and PEX a few short months before. But a day or two after starting very low dose Anafranil (Clomipramine) her intrusive thoughts and some of her panic subsided and she was able to eat more. She still has eating disorder and exercise compulsion thoughts, but the excessive intrusive thoughts, that were so distressing that she would literally grab her head and fall to the floor begging, "Make them stop, make the thoughts stop" have completely subsided. Also a bonus, this med helped her to sleep and increases appetite. (At least for our dd...) She was in TERRIBLE shape before starting this drug, and one ED center suggest calling in hospice. (She had a BMI of 11 at that point...) Honestly, I don't even want to think about this, so... MOVING ON... - we aren't POSITIVE it was the Anafranil/Clomipramine, but it is an older drug for OCD and I can't believe no doc mentioned this one in the over 10 years she's been sick. I HATE having her on these meds, but I'm terrified to take her off, because even though she isn't 100 %, she has gained most of her weight back and is taking a class and working a bit.

Just an update. DD's shingles rash didn't progress to the vesicule stage. It just began fading away, I'm assuming due to the antivirals. She had a couple of days of some pretty intense pains, but that has subsided substantially as well.

kim, The first couple of days were pretty painful. We got her on antivirals 2 days after she started having symptoms, and I'm giving her some l-lysine in addition to the Valtrex. Today would be about her 3rd day on abx, and this morning she became very emotional - Bart/Pandas style out of control. I'm guessing it's partly due to herxing - she had been on antivirals about a year ago and herxed on day 3 and 4. Her rash has not progressed to the oozy stage. It is still red, but a bit less so this afternoon. I'm wondering if we caught it early enough that it won't form the oozy, scabby stuff. Hoping... Yes, I'm reading the same thing about shingles increasing due to the vaccine. But now they just push the shingles vaccine! And the shingles vaccine only stops the shingles in a little over half the cases, but I do think it helps some with the post-pain stuff. (Like 67%, I believe.) Ugh... I'm reading a continuing education course on The Hidden Medical Causes of Mental Disorders by William Matteson, Ph.D. Wow, REALLY interesting read. He is talking about the brain, and says this: "The blood-brain barrier, which restricts the penetration of toxins to the brain, is not fully developed in humans until about one year of age. It is not known when the barrier becomes fully functional." (He is NOT talking about vaccines, but just discussing cortical growth). But that got me thinking - should we be giving vaccines to children BEFORE the blood brain barrier has developed? And should breast fed babies be given vaccines before they are done breastfeeding? There are so many questions that we aren't allowed to ask without being called ANTI-VAXXERS. Ugh! What an affective strategy to shut people up...

I know this is an old thread, but our 23 year old was just diagnosed with shingles. She got the CP vaccine when young, and ended up getting a mild case of the chicken pox anyway. She has had Bartonella streak-like rashes in the past, so when she broke out with the current rash (which is NOT streak-like) I wondered if it had something to do with Bartonella. But the pain associated with it was a dead giveaway to the dermatologist she saw that it was shingles. Does the fun ever end?

Our dd swabbed positive several times for strep while on 3-4 different antibiotics. (Penicillin was the first.) I personally think there is antibiotic resistant, but the doctors don't report it. We had 2 docs that swabbed her that said THEY DIDN'T BELIEVE IT, they were so shocked. So we took her to an infectious disease doc who wouldn't even look at her records because he said that was impossible. Thus, because they had been TAUGHT it was impossible, they couldn't/wouldn't believe the test results in front of them. I'm positive none of them reported it.

Our dd is older. (23) So she did it herself. It wasn't any problem for her to hold it that long, which was a shocker for me. Sadly, it made no difference for her, but I have read in multiple places it is affective for some. One thing I had never thought of that he mentions in the book (and the cost of YEARS of expensive probiotics makes me sick...), but if you take probiotics with tap water, the tap water has chlorine in it. Chlorine is there to kill the bugs. It won't differentiate between good and bad. Ugh. I bought spring water for the kids to take their probiotics with now. I can't believe that never dawned on me! I'll have to reread his book. (We own it.) We just found out yesterday that our son (who has suspected PANDAS/autistic spectrum like symptoms) has severe insensitivities to wheat, rice, corn, several nuts, etc. (And our grass, which he does the mowing!) among other things. He NEVER has a runny nose or headache or any typical "allergy" symptoms. But his confusion and brain fog are really bad, and now I'm wondering if this is all connected. eamom - like you, I felt the book had some great info, but I didn't agree with everything in it. But still worth the read, and helpful in many ways. Don't let my dd's experience with the enema discourage anyone. Really, she's one of those kids that NOTHING seems to help.

Really sounds like gut issues. Our dd has extreme anxiety at times, and she has had yeast overgrowth and when her stool was tested she had NO bifido bacteria. She also had a form of c.diff, but not the diarrhea kind - she has always been constipated. I'm not sure if the abx started the gut issues, or the gut issues screw up the immune system which ends up causing our kids to be on abx (chicken or egg), but research is showing the gut microbiome being screwed up is a major player in our mental and physical health. Yes, when the gut bacteria is off, you can get some major sugar and carb cravings, as these feed the yeast and bad bacteria. I'd really do some stool testing. Regular docs will roll their eyes, but there is plenty of research to back this up.

I'm sorry I only had time to skim your post. YES, some of this is what we saw with our dd. The urinary frequency and occasional incontinence was HORRIBLE. Absolutely changed our lives for years. We had to buy a port-a-pot so we could travel even short distances. Our dd is 23 now, and no one had heard of PANDAS then, so she went from urologist to kidney specialist - so many docs - and they had no clue, as nothing seemed physically wrong. So, as docs often do, they claimed it was from stress, gave her psych meds, and told us she might grow out of it. She has since (years later, and other issues cropping up) been diagnosed by Dr. K in Chicago and Dr. L at Georgetown with PANDAS - she actually has had all the symptoms of PANS except one. Her brother has not seen a doc (as we spend all our time and energy with dd's issues), but both of those docs said he probably has it too. Our kids are very different, but even my son gets the wiping continuously and using a roll of toilet paper when he gets stressed. He also does this throat clearing tic when he brushed his teeth, and has some OCD behaviors. I urge you to go to a PANDAS knowledgeable doc and not let this continue any longer than it has to. Our dd has lost over half her life to this disorder, and is still struggling with an eating disorder, which has been devastating. She did have a lot of strep when she was young, but it turns out she has Bartonella also. Honestly, the worst she ever was was after a mono like infection, so I don't think it is just ONE trigger - I think it's just the immune system all screwed up, maybe due to the gut problems after all those abx as a kid. We do probiotics, but her yeast overgrowth and gut issues have never gotten better. She rarely gets physically ill from sickness, so we don't realize what's going on unless there is an uptick in mental issues. I actually don't have time to finish! Ugh! I'll try and write later today.

sf_mom, Thanks so much! Interesting read, and very informative.

There was just a PANDAS conference in St. Louis, so I know there are professionals in that area. There is a PANDAS group in that area: http://www.midwestpandas.com/ They should be able to help you out with doctors. Good luck! (and if you find someone phenomenal, message me, as we used to be from that area and would be willing to drive!)

Funny, I'm reading about SIBO (small intestinal bacterial overgrowth) on another page right now, and read that some use low dose naltrexone for that when they don't have success with abx or botanicals. The interesting thing is the connection to inflammation and autoimmune disease: "SIBO has been shown to negatively affect both the structure and function of the small bowel. It may significantly interfere with digestion of food and absorption of nutrients, primarily by damaging the cells lining the small bowel (the mucosa). Additionally, this damage to the small bowel mucosa can lead to leaky gut (when the intestinal barrier becomes permeable, allowing large protein molecules to escape into the bloodstream), which is known to have a number of potential complications including immune reactions that cause food allergies or sensitivities, generalized inflammation, and autoimmune diseases (2)." http://chriskresser.com/sibo-what-causes-it-and-why-its-so-hard-to-treat/ Many say the answer is the gut - more and more of what I'm reading seems to point to that as well. Fixing the gut to help the immune system. Sorry that I can't contribute to the use of Naltrexone, but I was literally reading that article and asking my hubby what Naltrexone is usually used for when I saw your post!

I got the shots in 1992. I don't know about this shot, but I've read that when they pulled the Thimerosal from some of the other childhood vaccines, that they still used up the lots containing Thimerosal - they didn't get rid of them. And I'm a bit confused about all this anyway... I'm always hearing there is no concern now as Thimerosal has been pulled from childhood vaccines, but don't mother and baby STILL get flu shots with Thimerosal? Kim, I'll check out your link. Thanks.

I know this is an old thread, but I've been wondering about this myself. I'm Rh- and had the Rhogam shot. One child positively diagnosed with PANS, one with probable PANDAS.