mama2alex

What is a "prelim result" from Advanced Labs? When was the sample drawn and how long had your son been off abx prior to the blood draw? Advanced Labs can have false negatives, although its less likely than with a test based on an immune response. I think the false neg rate is 6%. But prior antibiotic use can affect the results. We waited until my son had been off abx for 4 months before doing the Advanced Labs test (waiting for results now), and I had been off abx for about 7 months and tested positive. Our son was in the PANDAS range on the Cunningham test and it turned out he had Lyme, probably from birth. The Cunningham test does not tell you whether your child has current infections or what they are. Also, IMHO, everyone with a PANS/PANDAS child should look at methylation at some point.

There are several excellent LLMD's on the SF Peninsula, if she can travel that far. It's about a 2 1/2 hour drive. PM me if you'd like the names/contact info.

If he is exhibiting PANS/PANDAS symptoms, you need to have him evaluated for Lyme Disease and co-infections as well. Any good Lyme-literate doctor who treats children will be familiar with the symptoms you're describing. And they can/will check for all possible infections - strep, viruses, mycoplasma, etc - not just Lyme. If you post what state you're in, someone here will probably be able to give you a recommendation. Many families here are dealing with Lyme. As for the feeling that you're falling apart, I remember it well. It is awful to see this happen to your child. I remember losing my appetite at first. The only other time that happened was when my mother was dying. It's that difficult. Hang in there. It takes time, but you will get help.

ILADS can give her names of the trained LLMD's closest to her. She can email them through their web site and they are very responsive. For now, she could print out the IDSA guidelines on treating Lyme and take them back to that doctor or to another doctor. They specifically say to treat the EM rash with 100mg doxy twice per day for 10-21 days, and give other drug options. Not that I love the idea of spreading the IDSA's misguided guidelines around, but in this case it's better than what her doctor was saying. This would protect her until she can get to an LLMD and then they can test for co-infections and make decisions about how long to continue treatment. Here's the paper: http://cid.oxfordjournals.org/content/43/9/1089.full See the section called "Early Lyme Disease, Erythema Migrans."

Primal Defense by Garden of Life is a tablet. It's dark brown - not sure if that makes a difference. I think we got it at Whole Foods. Our doctor recommended it, so I think it's good quality.

Oh my God, Momcap. I'm so sorry. You are in my prayers.

Our ds talked about suicide and picked up a few knives when he was at his worst. Its extremely scary. I would first safety-proof the house - all knives and other sharp tools put away where she can't reach; take the blinds down or cut off the cords. If she's a runner (our ds would try to run out into the street) you can get an inside latch that you put up too high to reach so she can't open the front door. If there's a lock on her bedroom door, I would remove it. In terms of treating, what's her status? Is she still being treated for Lyme and Bartonella? If you've stopped, they could be making a comeback. Our son has both and once we started treating for these, the suicidal stuff calmed way down and eventually disappeared. Can your pediatrician swab her and check strep titers, since she seems to know about PANDAS? I don't think a psych ward or the ER are the way to go. At 7, I think you can keep her safe until you get this flare calmed down. I think being alone in a psych ward would just add stress and you would lose control of treatment. You know this beast, you just need to figure out your next step. Sounds like she's been off regular IVIG's for a couple of years? Were they helping? Would it make sense to try them again? Also, I saw you posted about Clonidine. Are you still giving her this? Could this be causing the thoughts? Just asking, as I don't know anything about this med.

In the case of Lyme and autism, it is believed to be congenital Lyme. If the mother has Lyme and isn't aware of it, she can pass it to her baby in utero. This is what we believed happened with my ds. If she's not on antibiotics, you can run a Lyme culture through Advanced Labs and co-infection tests through Igenex Lab. Also, for anyone who suspects Lyme, having seen a tick or a rash is not a criteria. Many people never see either. Ticks are extremely small and if they embed in your scalp, behind an ear or knee or on your back or neck, they're easy to miss. Many people never develop the rash at all. If you want to look into this more, post on the PANDAS/PANS (Lyme Included) forum - many folks on there know a lot about Lyme and co-infections and some are dealing with autism. Also, here's a good website: http://www.lymeinducedautism.com/

Regarding sleep, have you checked her neurotransmitter levels? I believe its a blood test or urine test - can't remember. Some of these play a role in sleep and there are supplements that can help correct the levels.

Thanks for the update LLM! I think we are going to move forward with an evaluation. I just need to look at the doctors in our area and try to figure out who's best.

We are considering working with her instead of Dr. Rahman, just because it would be covered by insurance. Does anyone have any experience working with her? You can PM me your comments if you'd rather not share publicly. Thanks!

So I spoke to Dr. Rahman and he is no longer in network with Aetna. He said Dr. Jacob is covered by Aetna and has worked with some PANDAS kids. Has anyone worked with her? Any feedback? We are in such a tough spot with school, I am inclined to stay with Dr. Rahman and just suck up the cost. I think we'll get partial reimbursement for out-of-network expense. But I'm waiting to see if anyone here has worked with Dr. Jacob and whether they think she's really good. The good news is he moved us up to July 29th, so ds won't miss any school!

I emailed Dr. Rahman after I spoke with them, but haven't heard back yet. The woman who handles insurance is going to call me Monday, but I'd like to know sooner. This is really upsetting and I don't want to spend the weekend worrying about it.

You had mentioned that you're working with one of the top LLMD's. Just curious what he/she's given her so far to treat the Lyme and Bartonella, as well as the other issues you've mentioned. Maybe if you give a more comprehensive overview of what you and the doctor have done to date, someone might be able to help you brainstorm on what might be missing in her treatment plan. Also, how's the constipation at this point? I don't really think they can heal if their gut is such a mess that they can't poop. We've used magnesium for constipation and it works like a charm!

I just called to confirm our appointment in August for 3 weeks of intensive treatment at Rothman and the woman informed me that some of their doctors are no longer going to be in-network with Aetna as of July 1. She couldn't tell me whether Dr. Rahman will still take Aetna - does anyone know? I'm freaking out a bit, because this will take the cost of the therapy from about $300 to somewhere between $2,250 and $3,300. That's before airplane tix and housing. I think our insurance will cover some at out-of-network rates, but this is never more than 50%.

Who makes it? I take A-Bart by Byron White, but have never heard of Bart-A.

I feel for you. DS missed at least half the school year due to Mono and school anxiety, and refused to go at all the last 6 weeks. He was taken off abx in January and it's been a slow, but steady trip downhill ever since. We're hoping to have him back on abx by the end of summer after treating for mold and viruses. I have no idea how he'll be doing in the Fall and no idea if Rothman will help (going in August). I am trying to hold on to hope and you need to do the same. One mom who's taken her child to Rothman suggested I take pictures of school, classmates, teachers, anything that will serve as an exposure to school. I am also going to email the doctor and ask if he has any recommendations on what to bring or do to prepare. Just an idea. What's happening with your health? If you have any suspicion of Lyme at all, please don't ignore it. I did this for a long time (aided by negative western blots) and ended up very ill this winter. It made it extremely difficult to help ds and advocate for him. I tested positive on Advanced Labs this spring and am now being treated for Lyme in addition to mold, and feeling much better.

First of all, HPV is not required for school. There have been reports of many reports of major, long-lasting, devastating "side-effects" from this vaccine, not to mention about 25 deaths. From your description of this doctor though, I imagine he will dismiss these reports as anecdotal and push for it anyway. Your son does not need this vaccine. It is to prevent cancer his future girlfriends and wife many years down the road and their are many questions as to its effectiveness anyway. Tetanus - would that be the TDaP? That's actually 3 vaccines coming out of one needle. Hep A - That isn't required for school in CA. Is it actually required in your state? Meningitis - Also not required in CA. So if he's talking about the TDaP, that's 6 vaccines he wants to inject into your son in one visit. That's a lot, even for a healthy kid. He is obviously in denial about your son's illness, so he doesn't even recognize that he will be injecting a sick kid with 6 vaccines at once - something the package inserts even warn against. I wouldn't do it, and I agree with others - dump him. He's not listening to you, not helping you, and is pushing you to do something very risky for your child. There are many pediatricians out there who will respect your decision and even pediatricians (though they are more likely to be out-of-network) who take a more holistic approach and understand that vaccines harm some kids. Good websites re the vaccines are: www.nvic.org (National Vaccine Information Center) and www.sanevax.org (talks a lot about HPV/Gardisil vaccine). I would educate yourself on the vaccines and then make your own decision.

Sounds like you are definitely moving in the right direction! Bentonite clay is an alternative to charcoal, but it's a yucky drink (tastes like liquid chalk), so it may not go over any better with your daughter. Charcoal can be taken as pills, so its easier. They are black though, so this will start a conversation... Maybe try telling her what they are for, rather than what they ARE. Our integrative doc, who's treating us for Lyme and mold toxicity, also says to drink plenty of water with fresh organic lemon throughout the day, exercise at least once a day, and do epsom salts baths for detox. Since your son has been off abx for 5 weeks, he can do the Advanced Labs test in another 1-3 weeks. I would push for that, as the Igenex tests rely on the immune system to react, which is not a good strategy for people who's immune systems have been ravaged by Lyme. I have never tested positive to repeated Igenex tests over the last 8 years, but tested positive via Advanced Labs this Spring. And when Lyme researcher Eva Sapi tested CDC positive blood samples with Advanced Labs' culture test, there were no false positives. There was a 4-6% false negative rate, which is far, far better than the western blot. Its $600, but well worth the cost. I've spent several times that on western blots over the years. Are you and your husband symptomatic? I wish you the best in pursuing this. Reading Cure Unknown will help immensely in clarifying all of this for you.

You can tell her with confidence that her symptoms are commone symptoms of Lyme and she is CDC and Igenex positive for Lyme - so no question there. Maybe shifting the conversation away from "PANS" and toward a well known disease will help. I agree - have her read Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. The author soft-pedals the psychiatric symptoms of Lyme to some extent, but she does mention them here and there. And she states unequivocally that Dr. Charles Ray Jones was seeing sudden-onset OCD in children with Lyme as far back as the 80's. This is not new or unknown. If her symptoms have been around for years, she's most likely had Lyme for years. The IgM positive could indicate recent reinfection, not sure. If I were you I would take her straight to a good LLMD and make sure you are treating any/all coinfections and treat until her symptoms are GONE. Most, if not all LLMDs, have seen these symptoms in the children they treat, so they will understand what they are seeing. Also, if you live in MA, it's very possible your son is dealing with Lyme too. Did he test negative? The tests are, for the most part, unreliable and many with Lyme test negative. If he's not on antibiotics, you could do the Lyme culture through Avanced Labs. I believe their false negative rate is something like 4 or 6%. The study I read showed zero false positives. Mycoplasma can be carried by ticks, so that's also a red flag for him. The nastiness is mostl likely a herx. Is she on an aggressive detox regimen?

Hopeny, Our doctor recommends the ERMI test from Mycometrics above all others. Our house tested high in mold via ERMI, and negative via air testing and dust testing for live mold. Afterward, we found a patch of mold growing in our closet, as well as a couple of other possible spots, so we know the air/dust tests were inaccurate. Mycometrics is in Monmouth Jct, NJ, so you might be able to get a kit pretty quickly and then pay extra for a quick turnaround. I believe it's about $300 per room for two rooms tested separately, or $300 to combine the samples from two rooms and test then together. I'm sure you could ask them about testing the basement only and see if they can give you a discount. They give you a vacuum attachment in the kit and instructions on what area to vacuum and for how long. Then you mail them the dust sample and they analyze it. Their phone number is (732) 355-9018. If there's a way you can make sure the seller's realtor doesn't scrub the place down right before you test, that would help ensure accurate testing. The problem is that many realtors (all?) will try to increase the chances of a negative test by cleaning right before you test. An alternative would be to order the kit from Mycometrics that includes a cloth (instead of the vacuum attachment) and wipe the dust off the top of an armoire, kitchen cabinet, refrigerator or bookshelf that likely hasn't been dusted in a long time. If you decide to ERMI test, let me know asap and I'll see if I can pick up a copy of the sheet my doctor used to interpret the test results. I had it, but we left it behind when we moved out of our house a few months ago. I agree it's very important to test for mold before you move in. It's well worth the cost. Good luck!

Those two Western Blot bands would be considered positive for Lyme by Igenex. See this explanation of the bands: http://www.anapsid.org/lyme/wb.html You'd mentioned in a previous post that you've been bitten by ticks in the past, so odds are high that this is at least one of the things you are dealing with. Have you ever been tested for coinfections such as Babesia, Bartonella, Erlichia? Low NK cells is also common with Lyme, but can be due to other issues as well. Beyond that, its obvious your body is dealing with a lot of different infections. You might try working with an integrative LLMD who would know the best order in which to address all of these infections AND know how to suport your body through the process. I can't remember, have you cleaned up your diet - gluten-free, dairy-free, sugar-free, caffeine-free, soy-free, alcohol-free? Any or all of these changes can help. I was having headaches 24 hours a day some years back and eliminating gluten and dairy got rid of my headaches. Every time I "cheated" on my diet, the headaches came back. One other thought - could the "downers" be causing fatigue and hurting more than they are helping? Maybe you could try something more natural for sleep like Melatonin or magnesium? Maybe you've already tried everything else, but I just wanted to mention it. As an adult who's dealt with severe illness at times and been relatively well at other times, I really feel for you and am praying for you to get well.

Please PM me. I'm no guru, but we have been through this (still going through mold treatment). I'll help you figure this out if I can.

I added coconut oil to my diet a few months ago. I cook with it and combine it with fresh lemon juice for a great salad dressing. I'm feeling much better with Lyme treatment, mold illness treatment, and a fairly strict diet (GF, CF, SF, no alcohol, lots of veggies). I'm not sure how much benefit I get from the coconut oil itself, but its part of my overall healthy eating plan. DS hates it and knows immediately if I try to sneak a little in, so we haven't added it to his diet at this point. At some point we will.

Jim, There are many kids on this forum whose PANS is caused by Lyme and other infections. It's not just strep you need to rule out to determine if your son's symptoms are PANDAS/PANS related. So you should have your son tested for Lyme and coinfections (Bartonella, Babesia, Erlichia, Mycoplasma) regardless. Since you know he was recently bitten, you should contact the Internation Lyme and Associated Diseases Society (ILADS.org) and ask for an ILADS-trained doctor in your area. Or you could start a separate thread on this forum asking for recommendations in your area. If you contact an ILADS doctor and tell them he was just bitten, perhaps they can get him in right away. He needs a full evaluation by a Lyme-literate doctor because testing is not that reliable. Also, most Lyme-literate doctors have treated kids with PANDAS/PANS, PANDAS/PANS-like symptoms and kids with tics, because these all share symptoms with Lyme Disease. I definitely agree with others - treat the bite. My husband was bitten 2 years ago and we thought it had been attached less than 24 hours. We saved the tick and took it to Igenex, a Lyme testing lab (we live 1/2 hour away) and had it tested for Lyme and coinfections. It came back positive for Lyme only. While waiting for test results to come back, my dh started Doxycyclene and ended up being treated for 8 weeks. He never got sick.