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Fascinating. My kids have very similar test results, except my kids test high in B12 due to supplementation. From what I've been reading, if lithium levels are low, the B12 can't make it into the cells, and both my kids were zip/zilch/nada in lithium on a hair analysis. The only Pure Encapsulations liquid lithium I can find is Lithium Citrate. (I went to the Pure Encapsulations site.) Did you mean New Beginnings liquid lithium orotate, or Pure Encapsulations liquid lithium citrate? Thanks!

My dd had a similar situation. She had symptoms of PANS for a long time, but no one knew what it was. Dr. K diagnosed her, we went through IVIG (didn't help), lots of abx, etc. Strange thing, about a month or 2 after plasma exchange and a round of IV rocephin for suspected Lyme, she broke out in a Bartonella rash. They looked like purplish-red scratches or streaks on her arms, legs and torso. I had been to the doctor with cat scratch fever right before I got pregnant with her, and have always wondered if she could have been born with it. But how odd that we didn't see a rash until she was 22 years old! Most of the docs that saw her rash had no idea what it was, but when I told them it was probably bartonella, they looked it up and agreed. Although she hasn't been getting the rash lately, her mood is still unstable. She has an eating disorder, anxiety, obsessive, can't handle any change, etc. But she is much better than she was 6 months ago - when she was horribly depressed, suicidal, extreme anxiety, couldn't eat at all, etc. It was beyond a nightmare. Still no picnic, but more manageable now. I hope someone will get on here and answer some of your questions. We aren't sure what started bringing dd out of her worst place, as she had had several things going on in a short period of time. (Plasma exchange, then IV rocephin, then they started her on Anafranil/Clomipramine in the ED center.) I keep her on A Bart drops, but I really don't know if they are helping or not.

TinyTreasures, I noticed you added zinc and B6. Is there a chance your child has pyrolluria? B6 and zinc is the treatment for that, and I believe others on here have seen positive affects from treating for this. So happy you are seeing positive results!

My dd would get nauseus when she got strep, but the abx would clear it up right away. I did want to mention, with all those stomach aches, that I would have him tested for h.pylori. Helicobacter pylori is an infection in the stomach, and can cause malabsorption of nutrients from our food, thus causing all kinds of issues, both mental and physical. There doesn't seem to be any agreement on what test is the best - I think there are 3 ways to test for it, one being a breath test.

eamom, you are probably already aware of this, but just in case, thought I'd give you the link. It's "An Open Letter to Legislators Currently considering Vaccine Legislation from Tetyana Obukhanhch, PhD, Immunology:" http://kellybroganmd.com/article/immunologists-letter-legislators/?utm_source=Kelly+Brogan+MD+Newsletter&utm_campaign=d1c4c1220d-Join+me+for+The+Hashimoto%27s+Summit&utm_medium=email&utm_term=0_d0f977a8c5-d1c4c1220d-114730985 I am not anti-vaccine per se, but now that the government has made it where the vaccine makers are not liable for anything, I am very worried about what is going on. In my opinion, when the "pro" position on ANY issue has to resort to hate and calling people ignorant, there is usually something they are hiding. And all of our media are bought off due to pharmaceutical ads. This is not a safe situation. Here's a link to recent baby deaths in Mexico. Vaccines were stopped. It was kept very quiet hear in the U.S. media, and sounds like it is getting swept under the rug now. I don't think we should stop all vaccinations, I do believe some have saved lives, but the early schedule and the number is getting ridiculous, and the "pro" side tell us they are safe for everyone, and that is simply a lie. Let's be honest and let the real science and statistics be told. http://mexiconewsdaily.com/news/two-infants-dead-after-receiving-vaccinations/

Yes, I thought Rifampin was the drug of choice for Bart, too. She is a wonderful NP, but like many other "functional medicine" type professionals, is completely swamped and it is really hard to get in contact with her. (She isn't local, so appointments aren't that easy, either.) But none of the local docs believe in Lyme, Bart, PANDAS, etc., and an Infectious Disease specialist even told me there was no Lyme in Indiana. (Which both the state government AND the CDC say there is!) Good grief, I can't figure out how docs can actually specialize in something and be so clueless. He even argued that my dd couldn't have tested positive for strep after being on 3-4 different abx for it, even though Mayo says that can happen with mono. (And he wouldn't contact the doc office to check the records that she had!) I'm getting really tired of having to do the research for these people, when I'm not making a dime... and some of them are living large. We stopped the IV yesterday to give her body a break, and will start her on a lower dose. The 4 grams was just too much for her right now, and we can't mess around with any more weight loss. BTW - just in case the other meds aren't hitting the Bart, I have started giving her the A Bart drops. Going to try them, and when we are out of those, try the Buehner herbs rowingmom mentioned.

Thanks for the responses! I apologize for not checking and getting back. Our dd's rash started with streaks and an underlying rash on the left outside area of her breast. (Kinda freaked me out, my mom died of an aggressive form of breast cancer at 51, and her mother-my grandmother- had breast cancer, too.) The other ones have been on her arms or legs, and look very much like scratches (some 2-3 inches long) that are made up of tiny reddish purple dots. They last several days and go away. Her's don't look as much like stretch marks, as the lines aren't running in the directions you would expect, and they aren't on places you would expect. She was inpatient (eating disorder) when they started, but none of the docs there knew what it was, so they ignored it! Ugh! I told dd to mention Bartonella, and one of the docs went ahead and looked into it, and came back and told her that was probably what it was, but did not suggest treating it. Once you are in an eating disorder facility, "talk" therapies are all you are going to get. And I'm sad to say I think of LOT of those patients are PANS - many have fears of vomiting or choking, etc. But the docs there aren't trained to look for physical causes - it's all "mental" in their mind. Very aggravating. They look at you like you have a second head if you say your dd's eating disorder started due to PANS. But that's ANOTHER rant for another day! Dd's rash has been gone since starting treatment, but NP has increased her to 2 grams, 2x a day of IV rocephin, plus GSE and 2 oral Doxy, 2x a day. We are having to back off because she has been puking since 4 am this morning, with a horrible headache. (Throwing up is horrible for her, as we still have more weight to get on her...)

Honestly, I'd skip the therapy during the flare and get him on antibiotics. (I'm assuming you don't have him on them yet?) When our dd was young, she went for months terrified of bathrooms that had any chip, crack, or tear in them. (Basically, every bathroom!) It was horrible, but after a few months it just "went away", as suddenly as it came on. We did NOT know about PANDAS at the time, but she always had lots of strep and we would put her on abx. Of course, we never made the connection between the two at the time, but after years of this ****, now we know what was going on. So, if you can avoid the exposure therapy, (knowing that will initially cause more anxiety), and treat the infection - it would sure be a lot easier on your son. The only hitch would be IF you can find the correct antibiotic treatment. That's always the tricky part. Also, it might help to feed him watermelon and foods with high liquid content. And a natural vegetable laxative can be helpful for the constipation. I think one brand is called Senna-X. It's one of the few things that has helped our dd. So sorry you and your family are having to go through this again.

OK, after over 10 years of "PANDAS/PANS" symptoms, our dd ended up getting the reddish-purple Bartonella rash streaks. Out of the blue. I always wondered about Bartonella for her, as I had "cat scratch fever" right before I got pregnant with her, and she has always been highly anxious, panicky, OCD, etc. But she has never had the physical signs until now. Don't know if the plasma exchange somehow brought the rash out (she had that about 2-3 months before the rashes started), or the IV Rocephin she did for Lyme (about a month before the rashes showed up.) So her NP has agreed to treat the Lyme/Bartonella more aggressively (she never tried a combo before, always one at a time), but I'm worried this might not be the correct treatment. She has her on high dose IV Rocephin (she has a chest port), oral Doxycycline and grape seed extract. Here's my concern: She's got the rashes for Bart, but the only abx I see being used regularly for Bart is Rifampin, and that is not one the NP has ordered. I hate for dd to go through all this treatment and not be using the correct abx. I'd love to hear what some of you think, as I actually suggested Rifampin as part of the combo, but the NP decided against it. Any of you experienced in Bartonella treatment - I'd love for you to chime in. This NP has gone above and beyond, but my dd has suffered with this forever (she's almost 23 now), and I'd like to make sure we're treating correctly. Ugh!

No matter what your take is on vaccines, I think this video is important for all. I am not "pro-vaccine", and not necessarily "anti-vaccine." My friends and family on Facebook seem to think you have to be either for or against. Personally, I have made some people very angry at the mere mention some vaccines MIGHT not be safe! I do believe some vaccines have saved lives, and others are dangerous. I also know that "anti-vaccers" are being blamed for breakouts that are really due to some of the vaccines not being affective, and the CDC knows this but doesn't correct the situation. This video brings up some of my concerns that are rarely discussed, and it's not so much the thimerosol (although that is important), but the way the vaccine manufacturers are making a fortune off these vaccines and our government has made it where they can't be sued. These companies get sued for billions of dollars for their shenanigans with their other drugs, why would we expect them to be honest about research with the vaccines, when they know they can't be sued? This video is of Bill Maher and Robert Kennedy, Jr. Kennedy points out the CDC can't be trusted, which I agree they have been bought off. Revolving door with lucrative paying jobs between the CDC and the vaccine manufacturers. He even mentioned Dr. Offit, his patents and the money he made off the deal. He also points out that REAL science is not always in agreement with the safety the CDC claims, but everyone blindly follows the CDC recommendations. (I don't think he pointed out that the pro-vaccine movement will immediately ruin anyone's reputation if they suggest ALL vaccines and the schedules aren't perfectly safe, but I see this all the time.) And my favorite is one of Bill Maher's comments. It has to do with what I consider my more "educated" friends, who on Facebook will literally call anyone who questions vaccines "idiots" and "dangerous". They completely trust the "industry", and although I think it's pretty clear Maher is for vaccines and doesn't know much about the discrepancy, he thinks it odd they put so much trust into for-profit companies that can buy off people. So do I. Here's the link, and I apologize if someone has already posted this one. http://www.boughtmovie.com/robert-f-kennedy-jr-real-time-with-bill-maher/

Oh, beerae22, I feel your frustration! As our dd rapidly lost more and more weight, and she had physical symptoms as well, I took her to several docs, telling them of her PANDAS, and all they would do is say, "It's probably just a virus", and ask if we wanted to try another psych drug. Down to an 11 BMI, she ended up in ACUTE eating disorder center in Denver. Strangely, after only being there a few days, (not enough to get any weight on), she started feeling better mentally and physically. We can't help but wonder if the plasma exchange or the IV abx for Lyme had finally kicked in, but something had quickly made a difference in her mental condition. She isn't 100%, but is making big improvements, and ERC was pretty angry with us for pulling her out. But they won't acknowledge the PANDAS, and being isolated in an eating disorder place was really taking a toll on her mentally. The WORST experience was the ED/psych unit in our state that we took her to initially. They decided in less than 24 hours to call an ethics meeting - to let us know they felt she was competent as an adult of 22 that she could make the decision to die, and they would NOT resuscitate! We were HORRIFIED. We told the whole group in the ethics meeting of her PANDAS diagnosis by 2 top docs. We also mentioned that someone with an 11 BMI could not make rational decisions (as her blood sugar had dropped and she was not herself at all.) I finally convinced dd to eat while there and I would bring her home, but then one of the staff members told her is she couldn't control her exercise on her own she could consider hospice, that it was a peaceful way to die. So dd decides she is to tired to go on, and decides to stop eating. That's when we pulled her out, Against Medical Advice. The whole thing was surreal. Fortunately, ACUTE in Denver knew someone at that BMI could not make a rational decision, and told us they would do everything possible to save our dd. Not that they believed/treated for PANDAS per se, but kept her eating and monitored her medically. I am on an eating disorder site called "Around the Dinner Table". It breaks my heart the parents that write in about their little kids and their "eating disorders". These are young kids who are fearful of vomiting and the like, and I just KNOW this is more of a PANDAS thing, and often they mention it will start after an illness. But when I suggest they go to the doc about PANDAS, they don't usually get anywhere, and one mother whose dd is surely PANDAS, was told by her doc that since her strep test was negative, her dd CAN'T have PANDAS. Sadly, this mom believes the doc. Thought it interesting that her other child is on the autism spectrum, which we see so often. Sorry, got a bit off topic, but I so understand your frustration. NO ONE should ever have to go through the we have all been through with the medical community. So glad some change is being made to educate the medical community.

I don't know if it is PANDAS related or not, but my dd, (whose PAN morphed into an eating disorder) dumps salt over everything. The "rule" is she can't salt her own food, it's so bad. And she's almost 23 years old, but she simply can't taste her food very well. Anorexics often are low in zinc, which can cause you not to be able to taste well, but we have done the zinc test with drops in water, and she can taste it. I'm going to be having her blood levels of zinc done soon, to double check on that. So, maybe you should check zinc levels. Be careful of just supplementing with zinc, though, as the zinc/copper ratio in the body is very important. Too much zinc can mess up that balance. Strangely, my dd is also very low in copper on hair analysis, and OK in zinc, so we are not sure what is going on. I personally don't worry about salt per se, but when it is poured on in large amounts I'm concerned about what it's doing to other levels in the body. Our dd will really retain a lot of water after one of her salty meals. Not sure that's a good thing.

I got this in my e-mail today, but haven't had a chance to watch it yet. Our PANS dd had the first shot, and got the chicken pox also, but her case was mild. http://jeffhaysfilms.com/bought-movie-bonus-short-chickenpox/

Ophelia - my dd and I are so excited to hear that you've finally found a doc that knows what to test for. We know how much you have suffered, but it sounds like you may soon be getting some treatment. Hang in there, it sounds like you are in good hands with Dr. N. Please keep us updated!

I think this is a good link. Our dd had the overnight urinary frequency, anxiety, bouts of OCD etc. Morphed into anorexia nervosa, and then no one wanted to consider anything BUT the anorexia - which means psych med after psych med, therapists trying to find out the "root" cause of her anorexia. Not the MEDICAL root cause. Years and years wasted. And still, the eating disorder places roll their eyes at the mention of PANDAS. And I am the bad parent when I don't just go along with the "experts". I'm so very sick of this. We've had Dr. K (Chicago) and Dr. L (Georgetown) both diagnose her with PANDAS, yet we don't feel we can have team support with the current eating disorder team. Anyhoo, I just wish we had more psychiatrists that think like this: https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find

Our dd tested positive rapid test on 3 different abx. The only reason the 4th was negative was that the nurse barely hit the back of her throat with the swab! But they were thrilled it was negative, as they said it was impossible for the antibiotics NOT to clear the infection. They were wrong. Turns out, dd actually had EBV (mono) with the positive strep tests. According to Mayo, that is not unheard of, no matter how many docs or infectious disease docs tell you different! http://www.mayoclinic.org/diseases-conditions/mononucleosis/basics/symptoms/con-20021164 Notice under symptoms of mono: "Sore throat, perhaps a strep throat that doesn't get better with antibiotic use"

I totally agree with beerae22. OCD can morph into anything, and there is a direct connection with a certain amount of weight loss and developing anorexia nervosa. This happened to my dd. I would have NEVER expected my bright, extremely rational and mature child to develop an eating disorder. Now that it's happened, I realize that most people with ED's actually are extremely bright, but their minds are taken over with distorted thoughts - and I personally believe it is all connected to OCD. When she started dieting very sensibly, as she was quite a bit overweight, we discussed eating disorders and she honestly couldn't understand how anyone could think that way. But after a few months of not losing, she didn't actually fast, but cut her calories way back for a day or so, and her weight finally started to come off. BUT, the BEAST of ED took over her in full force. Literally had a different child. Exercise compulsion took over, ED thoughts overtook her, and life has never been the same. She had anxiety and urinary frequency from PANDAS before this, but this was a whole new beast. I lurk on some eating disorder boards, and many of the mom's there say there kids didn't have body image issues before the eating disorder. Some of them started eating healthy due to school programs, and then things went out of control. To me, this shows the child either had OCD or something like PANDAS/PANS, where it became more of an uncontrollable obsession. Honestly, I wouldn't be the least bit surprised to find that most eating disorders are caused by something like PANDAS/PANS. But for now, the Pharm companies are making too much money off the drugs, and what in the world will all these therapists do if people are cured of an infectious disease.

Has anyone tried or had success with IV Rocephin?

Need suggestions for Lyme/Bart treatments that you found effective.

Our dd did therapy with different therapists for YEARS. Never helped. Actually dredging everything up made her feel worse, and it was obvious to her that none of them understood what she was going through - some even seemed baffled by it. Lots of money, time wasted. It actually made her feel like she must be a "hopeless case". I know some on here have had success with therapy, but I personally don't feel a PANDAS/PANS person can be helped much during a flare. When things calm down for them, I'm sure some could benefit, but there was never a time it was affective for our dd.

megmo, I had a positive Lyme test, and I've never had the bullseye rash, or remember pulling a tic off myself. We are in the Midwest, where an infectious disease doc said there is no Lyme in our state, but he's an idiot, as the CDC says different. (Sorry - I had a bad experience with this doc!) The confusing thing for me, is why everyone acts like it's so rare or difficult to get a tick bite. Good grief - we were all covered with ticks in the spring just walking across our yard to get to the garden! We don't live in the woods - we have neighbors on all sides. We do have deer that come through, though. Do remember that Lyme is often misdiagnosed with MS. Also, I don't have time to look it up right now, but there is a guy, I think his name is Bruce Fallon, and I found a paper he wrote about Lyme causing neuropsych issues including anorexia. If you can't find it, I'll try and search for it later. If you have Lyme, a regular doc will probably NOT help you. You'll need a lyme literate doc.

powpow, Do you mind sharing what kinds of improvement you saw after a month? I'm afraid we won't see any improvement since she got so sick right after PEX.

I believe it was 5% human albumin.

We feel totally lost here. dd finished up plasma exchange last Monday, and she has been much worse mentally. She's also been completely exhausted, depressed, suicidal and is having terrible chills. Some of it we attributed to the Prozac they prescribed. But the exhaustion and chills are not going away, and I am beginning to suspect mono. She had mono a year and a half ago. We thought it was strep, as she tested positive several times while ON different abx. BUT, I also suspected mono due to the symptoms of complete and utter exhaustion for 3 weeks. I just checked the mayo site, and couldn't believe it, but what I read under symptoms of mono said, "Sore throat, perhaps a strep throat that doesn't get better with antibiotic use". AND ALL THOSE DOCS said she COULDN'T test positive for strep while on those abx, even though they were holding the positive results in their hands! Ugh! Infectious disease docs say that can't happen. Soooo, now that I've found out that you actually CAN get mono twice, I'm wondering if somehow the plasma pheresis could cause a reoccurrence. Can't get to doc until Monday to check EBV titers. Do any of you have a clue what could be going on? It's almost impossible to keep her out of a behaviorial unit, her condition is so bad, but I know they can't help her either. We are at a loss and exhausted. We get totally differing stories from docs and nurses as to how plasma pheresis even works. Her doc said she should have been better DURING the pex. The nurses say it's a gradual thing. I haven't heard back from Dr. L, but got the impression it would be a gradual thing, like IVIG. If she has mono, was the PEX all for nothing? She also supposedly has Lyme. We can't take much more and no one seems to understand what is happening. Please help.

Thinking of you today. Hope the IVIG is effective in reducing some of your symptoms. Dd is still wanting to write you, but has had a very bad reaction to Prozac. Might be a bit before she feels well enough to write. Please keep us updated on how you are doing.