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I'm in the middle of a book "Answers to Anorexia" by Dr James Greenblatt, who's an integrative psychiatrist. he has his own practice and is also an Asst Clinical Professor at Tufts Univ. His argument is that anorexia is a type of OCD that has food as the obsession and restrictive eating as the compulsion. He feels that AN starts with malorexia - a malnutrition of key nutrients that then alter the way the brain functions, triggering the psychiatric behaviors of AN. So the deficiency comes first, then the behavior. Then the behavior leads to further malnutrition, spiraling into this endless cycle. His answer is to test and correct zinc deficiency (which can change the way food tastes and is essential to the immune system and the brain), then test for elevated levels of urinary peptides (which indicate a deficiency of a digestive peptide called dipeptidyl peptidase IV leading to incomplete gluten and casein digestion). Then check for celiac's. He suggests that treating nutitional imbalances can lead to full recovery. However, he doesn't dismiss the usefulness of psychiatric meds to get thru a crisis. It's a fairly balanced approach, IMO. I found it interesting that things like pasta can inhibit the absorption of zinc and my DD with the food issues is heavy on pasta and is also zinc deficient. She's been on a zinc/B6 supplement for 6 months and this alone didn't change her eating habits. But I added a garlic pill to our regimen last week and her appetite is improving. She ate breakfast twice last week - a first since last summer. Garlic apparently increases bile production, aiding digestion.

You know how you're supposed to "name" the OCD? My DD names each type of anxiety as a different sort of fairy. She has the "sad for no reason fairy", the "what if" fairy, the "nobody loves me" fairy...When a fairy shows up, we tell the fairy to give us evidence. "Ok "nobody loves me" fairy, today mom snuggled with me, gave me a hug when I skinned my knee, made a craft with me and read a book with me. That's evidence she loves me. What's your evidence that she doesn't? (silence). "See fairy. You got nuthin. You're a big fat liar who just wants my attention. We've had this discussion before, fairy. And there's no reason to waste any more time letting you have your way and giving you my energy. So go away. I have better things to do". For the "what if" fairy, I tell her there's no winning an argument with this fairy and I'm not going to get sucked into some game. I have better things to do and so does my DD. Then I walk away from it. For confessions, your DS could "catch" his "fairy" and tell him "no, I'm not going to give you my energy and attention. You have no evidence that my friend was hurt. He didn't go to the nurse, didn't cry, didn't need a sling...You're just trying to take me away from the things I love and I'm not going to give you your way." Or, if he absolutely must confess, you tell him he's allowed 15 minutes when he gets home from school. He can write down all his confessions and put it into a box. Then after that, any time he feels the need to confess, you tell him he must hold it until tomorrow when he can write again. Over time, they of course can't remember all the things they needed to confess and supposedly the list gets shorter and the need less intense. Read John March's "Talking Back To OCD" - it has some excellent examples on this topic. Tryptophan has helped my DD a lot. But I wouldn't add that if you're going to add an SSRI. FWIW - when my son (9) went thru a bad spell last year, he too was becoming aware of sex and it factored into his behaviors. But it also effected his friends' behaviors and they don't have OCD. So some of it is "just" part of growing up, only greatly exaggerated by OCD.

LLMD stands for Lyme Literate MD. In our case, he's a Doctor of Osteopathy, with a naturopath philosophy. While my kids have/had lyme, I don't. So I see a naturopath to help me with my own needs. And then my "hobby" is doing research on all this stuff. So it's a combo.

We only used Thorne methylfolate, not methylguard. Both kids and I used it for a time. Never saw any changes.

Not sure I understand the thinking that pulsing will drive the infection deeper in pediatrics but not adults. DS had already been on single abx for Pandas for 2+ yrs, unsuccessful IVIG. Not sure how anything could drive things much deeper after all that. He's been on combo abx, incl. 5 wkends of tindamax, over the past 18 months. I'm feeling like we've gotten most of it but want to try pulsing just to make sure. LLMD started using pulsing last summer after adopting a number of patients from another LLMD who closed his practice and they were all on pulsing, so he continued and has been impressed with the effectiveness. He didn't specify if it was adults only but we have spoken about it terms of my 9 yo. using combo abx for 3 wks, then off of all abx for 3 weeks... I have heard that from another mom on the west coast but there the LLMD used it as part of regular pediatric lyme abx schedule. Confused by this. How can it be a regular abx schedule but also pulsing? I don't think I'm following you.

Fixit - you need to take the washing machine apart to look for mold. If it's a top loader, go to youtube and search for a video to see how to take apart your brand. Usually, there are 2 screws that attach the outer body cover to the electrical panel and knobs. Take off the body cover and you'll see the metal drum set inside a larger plastic drum. The mold on my machine was covering the plastic drum. If you have a front loader, the mold problem is generally at the seal of the door. I understand it's harder to access for a good cleaning but you can use a cleaner specifically made to clean the drum and fight mold. Jodie - re: pulsing of abx - my LLMD has been using pulsing with great success. 3 weeks on/3 off. He says the initial 2 cycles are rough, but patients see big results after a few go-rounds.

This might not be a tic. There are many things that can trigger throat clearing, in my experience - mold, milk allergy, low level virus or infection (just b/c she doesn't look sick doesn't mean there isn't some sort of post-nasal drip). It's hard, when you have a disease, to sort thru what's a symptom and what's something unrelated. One thing that might help is a mucus thinner, like mucinex, or an antihistamine/anti-inflammatory, like quercetin. If there's a physical cause for the cough, these things may help. If they don't help, you'll be ruling things out.

I do think 5 months isn't long in terms of lyme treatment, especially since you've only been doing a combo abx approach since Dec/Jan. It's a long haul 18-24 months? I agree with Julia - mold came to mind, esp. with the allergies being such a big factor. At the suggestion of another member, I took apart my washing machine and found mold all over the plastic drum of my washing machine. Mold can be anywhere and can really contribute to inflammation and histamine issues. Survingmold.com has a great list of labs to run. Definitely helped me zero in on a few things that weren't "the" source of our problems but certainly contributed. The other thing that jumped out was the topic of methylation. Since you've been away for awhile, you might've missed the big exploration this past winter on the Pandas forum. Think of methylation like metabolism. It's about how well or inefficient your body is at performing many essential chemical reactions. Under-methylation is a big factor in allergies. You might want to look up MommaKath - she's working with a DAN in your are who's helped her DS immensely. - Could also be important for your 4 yo Agree with Kara to be wary of Singulair. It has caused issues for others. It also has side effects for the general population. A natural supplement you can look into is quercetin. The down side is the pills are bigger and only last about 4 hrs but no side effects. The final thing to consider is deficiencies in vitamin/mineral/essential amino acids. Fxcfer and I have both seen dramatic improvements by going down this path. My DS has a genetic deficiency called pyroluria. Supplementing with a product that contains zinc/B6 made a huge difference for him. You might also find magnesium helps alot for tics and brain fog. Garlic is helping my kids with gut issues. I think there are many ideas you'll have to look into - and each may help move things forward. For us, some things helped in a big way, some helped in small ways. But it was a combo of approaches that worked best. I'd spend some time searching old posts on the lyme forum: KPU, detox, mold, methylation. Also read back issues of www.betterhealthguy.com - he explores a lot of these issues.

I don't know if it's urban myth, but my LLMD will not use doxy on kids until all of their adult teeth have come in. I only read the first paragraph of the study but the two things that struck me were: 1. these kids only had 2-3 courses of presumably 10 day abx courses. So 20-30 days? Our kids are put on much longer courses. 2. my understanding isn't that doxy stains the teeth that are in the mouth at the time of administration but that it stains the developing adult teeth that are still below the gum line. That's why people who have all their adult teeth can take it. The staining is thought to effect developing teeth, not emerged teeth.

I am in the minority but my DS did not respond well to IVIG. Had 10 weeks of horrible increase in symptoms with no benefits. I kicked myself because I always had reservations about IVIG for my son. Something inside made me very cautious and we avoided it for a long time. The one upside was that his poor response led us to a lyme/bartonella diagnosis and subsequent treatment. This eventually gave him a 5+ month complete remission. He caught what was likely strep last month (didn't get him tested) and he did have a Pandas flair, but it was a 2-3 vs. previous episodes of 9-10. He is now 99%. So my only point is that every kid is different and unfortunately, no one's response will let you know what sort of response you may see in your own child. If you feel it's worth trying, there are many stories to support that decision. If you have reservations, there are other ways to get to health. I think you have to listen to that voice inside and trust your instincts.

Since KPU results in a deficiency of zinc and B6, I would hesitate to take a B supplement prior to the test. I don't know about GP's test. We used European Labs (aka Vitamin Diagnostics) http://vitamindiagnostics.com/ Go to the tab that says Labs/Specific Tests/Kryptopyrrol in urine then at the bottom of this tab, in the left, click on "forms". European Labs says to be off of supplements - especially vitamin and mineral supplements for 5-7 days prior to the test. We stayed on abx and probiotics but stopped everything else. It showed us that the stuff DS takes does make a difference, as he didn't feel nearly as well by the time Day 5 w/o supps arrived. He was very happy to resume supplements after the test. European Labs instructions say to do a 6 hr urine catch. Dr K recommends you do a 24 hr catch, as your levels of pyroles fluctuates thru the day. So he feels a 24 hr average gives a better picture. You need to have a urine container that measures the total volume collected- I don't believe it comes with the kit. You can get one at CVS or Walmart. Also get a small corrugated cardboard box to put the collection bottle into before you put the whole thing into the Fed ex Bio bag. Our original kit didn't include a box and Fed Ex returned my sample because of that. So we had to re-do the test and get a box the next day. The Lab swore no one has ever had a sample rejected because of this, but DS was not happy about having to do a second day of peeing into a bottle. So better safe than sorry. If you want the specific instructions we used or a sample of the completed form, PM me your email and I'll send you copies of what we used.

You can also look into "naturals" - inositol, 5HTP, tryptophan...I am not opposed to SSRIs, but I wanted to give naturals a chance first. My DD's diet is very restricted (very picky eater). So it's very likely she doesn't get enough "raw ingredients" to make enough seratonin. My son had good results with inositol a few years ago, but it didn't help DD much when we tried it for her this winter. So we moved to tryptophan a few weeks ago and this has helped her a great deal. What I like about the tryptophan is that there isn't the long build up to see results or the long taper off to stop. It doesn't seem to be effecting her drive and she has joy again. Here's a site someone else posted that helped me a lot: http://www.thewayup.com/ click in the yellow image of the book "The Way Up From Down" and you can download the entire book for free. Again, not dis'ing SSRIs. Just offering other options, FWIW.

My limited understanding is that yes, myco can be very hard to beat. Here's an article by "the" myco guy - Garth Nicholson http://www.morgellons-uk.net/?p=467 But if a chronic infection is the reason for stalled progress, and continued IVIGs have not aided in recovery, can you help me understand the reasoning behind continued IVIGs? I know some with lyme are also following this protocol and one explanation I heard was that it strengthens the overall immune system, but that doesn't seem to be what you're experiencing in your labs. I mean no disrespect. I'm just confused.

Everything my kids are on is reviewed at every bi-monthly LLMD appointment. Initially, specific supplements were suggested by the doctor. Some have worked well and my kids remain on them. Others didn't pan out and we tried other supplements that treated the same issue - e.g. we initially tried alpha lipoic acid for oxidative stress, then tried liposomal glutathione, and are now using resveratrol instead. A few are things I read about on the forum or through research and then asked our doctor about adding them (e.g. milk thistle for the liver - a good thing for those on long term abx and/or ibuprofen). So it's been a combo approach but even if it's something I decide to try on my own (e.g. garlic for yeast), I'll run it by the doctor in a few weeks when we see him. That's one of the things I love about using an integrative doctor. The conventional doctors we once used just shrugged when I asked about supplements, so I felt very alone and worried. Now, we see a doctor who's well versed in supplements and can discuss pros and cons with me. It gives me that safety net. Like S&S - I too now take many of the same things my kids do. It just makes me feel better. I can tell a difference - especially if I stop for a few days.

The Analogy Queen strikes again!!! God loves you, Laura. Winter sweat pants yielding to shorts = treadmill and diet. Guess I have food on the brain

My kids' initial episodes were by far the worst. Truly horrific. Now that we know more, it is far easier to manage and keep things from getting out of hand. But you do need to address underlying issues in order to get to 100%, IMO. That may include treating chronic infections, vitamin/mineral/amino acid deficiencies, food allergies, mold, metals, yeast... Every kid has a unique profile. My best advice is to neither panic nor "wait and see". Take it seriously, get with the right doctor(s), treat promptly, and stay balanced. Your DH and other children have needs too, as do you as a person. It's like preparing Thanksgiving dinner. The bird can't get all the attention. It's about balance and turning your attention to a full array of needs of everyone in the family. Yes, your DD needs treatment as quickly as possible. But if that means waiting a few weeks, she isn't going to be permanently damaged. Try not to go to that dark panic place. In addition to medical treatment, I highly recommend both cognitive behavior therapy and family therapy. For many, this disease is much more than just infection=>neuropsych behavior and abx/immune suppression=>full remission. Treatment needs to cover a full range of issues, in my experience. It's the combo of professional therapy, daily home therapy, lots of communication, supplements/diet plus medical treatment that has helped us avoid explosions as bad as the first one.

An even dozen in my house: 2 abx, Core + primrose oil ( for pyroluria), resveratrol (oxidative stress/inflammation), multi-vitamin, milk thistle (liver support for abx), garlic (yeast), magnesium (brain), psyillium husk (lower GI), combo probiotics (upper GI), plus DS takes copper a few times a week (due to high zinc in Core) and DD takes tryptophan (for everyone's sanity). This blend changes every few months. We just dropped D3 as the sun started coming out and just added garlic. You do get pill fatigue, but these have made such a difference. When DS got what may have been strep last month, he went thru a flair that was maybe a 2-3 compared to the 9-10 crises of days gone by. For him, the Core and primrose oil for pyroluria are key and he will probably be on that for life. Probably the magnesium too - it really helps his brain. The other stuff is good general health stuff. The reality is the kids have health issues and they don't get what they need from their diets. They both would rather feel good than go back the the old days.

Abbe - just a personal opinion...but if I had to chose between a huge battle of getting my child do drink something I personally wouldn't drink (drink garlic juice? ewww!), I'd rather let him take a pill that would be partially absorbed. There are bigger battles I'd pick.

I don't have any concrete advice, but I think you need to look at this from an ehrlichiosis perspective and not strictly a Pandas perspective. I would not be comfortable leaving the ehrlichiosis untreated. If you look at the CDC website http://www.cdc.gov/ehrlichiosis/symptoms/ The symptoms you describe sound an awful lot like an ehrlichiosis issue and may not be a simple stomach bug or negative reaction to abx. Since you have a positive test for erhlichiosis, I'd be calling the LLMD and seeing if you can get in sooner than next month. Tell them/remind them that you have a positive test for erhlichiosis, you're seeing symptoms and need to get in asap. I'd email him as well. The call will be handled by the front desk. The email will go to the nurse. Between the two, your message might get more attention. In the meantime, I'd do more research on erhlichiosis beyond the CDC. You may also want to post in the lyme board. I think this is a more pressing issue than Pandas for your DD. JMHO.

Not sure if this is the exact link you had in mind, but here's the story. http://wnyt.com/article/stories/s2530227.shtml?cat=300 CorinthDad or LeRoyMom, if you know Lori, please suggest that she really educate herself about lyme. I have respect for Dr T when it comes to Pandas but there are other doctors who have more experience in treating lyme. Lori makes reference to treatment in terms of months. But she suspects she may have had this for years. If that's the case, treatment could extend well beyond a few months. As this whole story illustrates, you really need to be with the right doctor for the right illness - in her case, an experienced LLMD who has knowledge of neurological lyme.

This guy expressed what was rumbling around in my own brain. What's really interesting is that I was looking into yeast issues and garlic is recommended as an anti-fungal for yeast. So it could kill 2 birds with one stone. Anyone ever try garlic capsules for their kids? Anyone have experience with thiamin? Thanks Nancy!

Maybe this is just my ignorance of narcolepsy, but what I read in your post is extreme fatigue, but I don't see symptoms of falling asleep suddenly, like a light switch, or sleep paralysis. Is it possible the extreme fatigue is being caused by viral - e.g. epstein-barr, mononucleosis, etc - infection? Or possibly an underlying viral infection that's then being exacerbated by intermittent bacterial infections like strep? In other words, could it be a chronic virus plus Pandas? Have you tested for EBV (epstein-barr) CMV (ctyomeglovirus) and the herpes family of viruses (HHV's)? A non-believing doctor will tell you that 50% of kids will test positive for these infections and 95% of the adult population showing previous exposure. Most people don't even know they've had it - it feels like the flu and 2 weeks later, you're better. But some people can't seem to shake it and the fatigue gets worse and worse. You can also look into Stephen Fry and FL1953 - a virus he feels plays a role in chronic fatigue. Here's an interview: http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/3337189-drfrye-interview-bug-protozoal-infection-112011 I'm not trying to dissuade you from Pandas at all. But if there's a viral component, then treatment would be different, or at least have an anti-viral piece. My DD7 was sidelined by epstein-barr for 4 months. She ended up unable to attend school for more than 4 hrs. and would then come home and lay on the couch, exhausted. We tried a few different things but ultimately what helped was l-lysine, an amino acid found in legumes but can also be found in health food stores in the U.S. Within days, we saw dramatic improvement. The only down side is that l-lysine can lower seratonin levels and increase anxiety. So we had to also add tryptophan to keep her from getting moody and depressed. But for her, it gave her her life back. She is now back in school full time, a month after starting treatment. Might be worth tackling this from multiple angles.

Also interesting was an article this week that said they've discovered specific antibodies in Alzheimer's - suggesting perhaps that there's an infectious element?? BTW - I recall Yasko discussing the BBB and she mentioned something about lipids being necessary to keep it strong. I was a bit glazed over by that point in the DVD - do you recall what she suggested to strengthen the BBB?

Many, many people who have lyme don't recall a bite and it's said that the number of people who develop and EM rash could be as low as 40%. Here's an overview from ILADS: http://www.ilads.org/lyme_research/lyme_articles6.html Remember that a deer tick is most likely to transmit lyme in the nymph stage, when it's the size of a poppy seed. Unless it's fully engorged, a deer tick is way smaller than a dog tick. Very very hard to see sometimes. And if your son were bitten on the scalp, it's possible you wouldn't see a rash if there were one. You can drive yourself crazy second guessing, looking backward. I rejected the idea of lyme for my son for a good 6 months or more. But the best way to rule this in or out is to test for it. A standard western blot done thru a regular lab (quest, labcorp) is fairly unreliable. These labs use CDC criteria and intentionally do not look for certain bands of antibodies that are lyme-specific. (long story). So there are two labs the people here have generally used - Igenex, which looks for antibodies like the CDC western blot does, but it includes the specific bands that the CDC guidelines omit. The other lab - Advanced Labs - has recently launched a test that looks for the actual spirochete bacteria in a culture, much like a strep test cultures strep. http://www.researchednutritionals.com/information.cfm?id=255 The Igenex test is @ $200 and although you have to pay them out of pocket, they give you the paperwork to submit your own claim for insurance and many of us have gotten reimbursed @ 60-80% of the cost. As I understand it, Advanced Labs is @$600 and is not covered by insurance. But...there's no debate about the result if they find spirochetes. Both labs require a doctor's signature on the req. form.

Best of luck, Deedee. Maybe pack some melatonin and/or tryptophan...hope the week brings your whole family much needed relief!