mama2alex

My son loved the "Secrets of Droon" series. Other good ones were "The Mouse and the Motorcycle," "The Cricket in Times Square," "Chronicles of Narnia." However, avoidance may not be the best route long term. I'm no expert on CBT/ERP, but they explained to us at Rothman this summer that avoidance (giving in to the fears) only makes things worse. As you are seeing with the reading fear, when you go the avoidance route, their world slowly gets smaller and smaller and they find more and more things they feel they need to avoid. I don't know where you are with medical treatment, but once he's fairly stable and capable of working on these things, I would highly recommend finding a good therapist to help you work on ERP.

"Warrior/worrier" - that's my son! They did get back to me and explain that back when we ran the test in 2007 the SNP's on the second page were so new they hadn't been updated with results. She sent me a letter explaining how to determine whether there is a mutation for each. The COMT I mentioned was P199P - I already had results for the others, and sure enough, he is hetero for 3 out of 4. Looks like we are also dealing with MTHFR, MAO and VDR. I think our doctor probably has a handle on these in terms of supplementation, but I'm looking forward to understanding it all and being 100% sure we are on the right track. Also, he didn't tell us to make any diet changes for methylation, so I want to make sure we're eating the right things.

We have and continue to cover a lot of ground over the last 4+ years of dealing with PANS. We're treating viruses, Lyme still, yeast, using probiotics, and we've treated mold (but have more of that protocol to do). Many things have improved significantly, and for a while I counted his mood among them - but not any more. The main reason I'm zeroing in on methylation right now is that the period when we started ramping up on the methylation supps and his mood started heading south seem to correlate. Unfortunately, between his basically dropping out of school at the end of 6th grade, switching doctors, going to Rothman for 3 weeks and my own health issues, I did not carefully document. So now I'm left to retrace our steps and try to figure out what happened. It could easily be a herx, but the methylation thing has been nagging at the back of my mind for a while and I will feel a lot more comfortable once I have a handle on it and can double check the doctor's recommendations. If I had a compliant child, I would have tried GF/CF long ago. I am sensitive to both gluten and dairy, so it's likely he is too. We've had him "sugar-free" since age 3, but he has a history of "cheating," and I suspect he's eating sugar on a regular basis now that he's in middle school (when I'm not around). He seems addicted to sweets, quite frankly. So those are possible culprits too. I hope to get him in a better place in terms of compliance (and maturity) and then see if he will do a trial of GF/CF/SugarFree (without cheating) at some point. What is Oregon Grape, and what does it treat?

LLM - Thanks!! I realize you've given these instructions a number of time to various forum members, but I really appreciate you repeating yourself for my benefit! Now that I'm sorting through the Heartfixer document and trying to decide what to delete, I've hit on another question. On my son's Yasko report, some genes, such as BHMT, COMT, MTRR and ACAT list the result as "To Be Determined" and there is a column labeled "Call" under which there is either a letter (C, A, G, or T) or the word "Hetero." Any idea what this all means? I've sent an email to the person who emailed me the report also.

We did Yasko's genetic testing on my ds several years ago, did the methylation support for a while, then stopped because the number of supps was overwhelming. Recently the doctor has put him back on methylation supps, but I have a nagging feeling that he's on the wrong ones, wrong dose or we're missing something. He has been very moody and defiant, and often downright mean lately - after being very sweet for some months. It could be something else, but I'm suspicious of the methylation supplements and want to be 100% sure we're doing the right thing in that area. I am just starting to read recommended articles and try to figure this all out for myself. I'm wondering if I can use Genetic Genie or something similar with Yasko results, or whether we need to run 23andme on my son. Any help would be much appreciated! I am still dealing with some brain fog, but it's better than this past winter when I could barely think at all, so I am (hopefully) ready to tackle this!

This just showed up on my Facebook page. The focus is on Lyme, but seems like a lot of it will be applicable to other types of chronic illness. http://lymelesslivemore.com/ "Lyme Less Live More" September 18 - 20 Day 1 - Physical Day 2 - Mindset Day 3 - Energetics The speakers include Dr. Klinghardt, Connie Strasheim, Andy Abrahms (produced the film, Under Our Skin), and Dana Walsh (featured in Under Our Skin).

A rash that looks like stretch marks is a common symptom of Bartonella, a tick-borne infection that often comes with Lyme. It can also be transmitted separately and by other things than ticks. Glad you are going to be evaluated by an LLMD!

Thanks for posting! I'm going to make sure our doctor knows about this.

Welcome to the forum. I'm sorry you are dealing with so many health issues. It's sounds like Lyme is a likely suspect in your case. I agree, you should find an LLMD right away and be fully tested and evaluated for Lyme and coinfections such as Babesia, Bartonella, Erlichia, and Mycoplasma. I wouldn't go the steroid route until you've ruled Lyme out. I recently read a great book called "The Lyme Diet" by Dr. Nicola McFadzean. You might want to check it out while you are waiting to see the LLMD. I think the diet changes she recommends can be helpful for anyone with this kind of multi-systemic health issue - whether it's due to Lyme, viruses, mold, autoimmune issues, or something else. It's a way of eating that supports the gut, immune system, and helps lower inflammation. Also, if you are not currently taking anti-biotics and haven't for the last couple of months, I would push for the Advanced Labs culture for Lyme. It doesn't rely on the immune system like many other Lyme tests, so you have a better chance of getting a true answer.

I'm so sorry you are facing this. I understand your fears. I'm not sure I can give any solid advice as I found the timeline a little hard to follow. When were the two months of Lyme treatment? Did the doctor say she was done with that or is the Bactrim and Azith another phase of that? My first instinct is that it's a herx if the lying and extreme behavior started soon after the abx change. Also, you said charcoal has helped for an hour or two - that also points to herxing. Have you tried getting her on a more regular and intensive detox regimen with the antibiotics?

Jonny, I would encourage you to keep reading and posting here. There is a lot of collective wisdom here and people really care. I agree with the posts above, except I do think it's possible one thing you are dealing with is PANDAS. Your Anti-D Nase B is high, so I would talk to a PaNDAS doc about that. Did you have a throat culture? Some people are carriers - they have no physical symptoms, but some do test positive on the culture anyway. Also, has anyone tested you for heavy metals? Do you have amalgam (silver) fillings or have you eaten a lot of fish at any point? Your age group was still getting lots of mercury in vaccines, so I'm sure you got exposure there. I ask because your body can be "dealing" with heavy metals for a long time and then you have a triggering event which starts a cascade of problems leading to a further build-up of heavy metals because the body stops excreting it efficiently. This happened to me after my son was born. In my case it was from amalgam fillings, which are 49% mercury. In your case the triggering event would have been 6 months of abx which probably wiped out the good flora in your gut. With regard to food, have you tried an elimination diet? This is where you eliminate pretty much any food that can cause a reaction/inflammation, then you add foods back in one at a time to see if you react. In your case you'd be looking for a decrease in obsessive thoughts when all suspect foods are eliminated. If you do see a decrease, then you start adding foods one at a time to see if the thoughts come back/increase. Good luck to you. I hope you find an answer soon.

How many days have you been giving the charcoal? Does it coincide with the start of the headaches and vomiting?

I'm so sorry she's not doing well. Have you put anything for detox in place? If so, what are you doing?

Glad to hear you are getting help there! I grew up in Omaha. Boys Town has been around for a long time and has always had an excellent reputation.

We have a doctor in N. California who's been working with patients on methylation for at least 6 years. Let me know if you'd like his contact info.

It seems that some of what I was originally responding to has been edited/deleted, so I'd like to amend my post to say this: With regards to Lyme being fatal in some cases - absolutely. As mentioned above, Lyme has been implicated in heart disease, Alzheimer's, and MS, not to mention ALS and cancer. In addition, it's not uncommon for chronic Lyme patients to take their own lives after years of unsuccessfully battling this disease, either due to depression or no longer being able to go on living so disabled and in so much pain - or a combination of the two. Regarding the CDC press release, it's so good to see the CDC starting to acknowledge what ILADS has been saying for years. Hopefully, this is a sign of policy, testing, and treatment guideline changes to come.

Other good detoxers include bentonite clay, activated charcoal, epsom salts baths and exercise. I agree with nicklemama, Burbur is great and we too drink lots of water with fresh lemon and use glutathione, but in transdermal form.

Is the meanness a new symptom? Can you trace the start of it to any change you made in her regimen? What does her doctor say about this? Just off the top of my head, I noticed you aren't giving anything for detox, so it could be a build-up of toxins. Also, could it be yeast? Have you had her tested for this?

Because she has a history of fatigue and other issues, plus the recent mysterious bite, I really would see an LLMD. A Lyme rash won't always be the classic bullseye and the tests are unreliable. I recently cultured pos for Lyme after a long history of health issues. I had a rash, but not a bullseye, and always tested negative on repeated Igenex western blots.

Glad to hear this! I think this company and its products are a serious problem. That's why I keep bumping this thread for new people. So good to know the FDA is asleep at the switch... or worse.

My ds and I went through mold treatment this winter (me) and spring (ds). According to our doctor, there are 11 steps to the entire course of treatment. The first steps were to move out of our moldy house and then 4 weeks of taking cholestyramine 4 times per day. Our doctor feels, as does Shoemaker I believe, that cholestyramine/Questran is the only medicine that will adequately pull out the mold toxins. So I don't think the clay (do you mean bentonite?) is enough. I know another one of the steps will be to treat MARCONs/Staph in our nasal passages - a common problem with mold toxicity. Did your doctor test for this - it's done with a nasal swab. Before he will treat for the MARCONs, the doctor is focusing on Lyme and co-infections and viruses. I don't know what the other treatment steps are yet (I didn't ask b/c I'm on overload at this point). It's good you've ordered the ERMI test. I would say that if your ds was exposed to mold at a younger age and has the genetic susceptibility, it probably makes sense to treat it anyway. But knowing the current status of your house needs to come first because if there are still mold toxins in your home, you need to move or remediate before you start treatment. Your C4A results are a bit confusing, as our doc says that his Lyme patients are almost always high, but in general below 10,000. His Lyme AND mold patients are almost always above 10,000. My C4A started at 25,000 and my son's was 17,000 before the 4 weeks of cholestyramine. Do you know what your son's actual number was? Did she test any other markers for mold? Our doctor tested several because he felt it was important to get a baseline, then treat, then check the numbers again when we thought we were nearing the end of treatment to make sure they had all gone back to normal. Otherwise, how can your doctor know when she's finished treating the mold? I'd say it wouldn't be a bad idea to get a second opinion from someone who has a lot of experience testing for and treating mold toxicity. Not sure where you live, but we have a couple of good docs for this in northern CA (one of them is our doctor). The reason I say this is that 1) your ND recommended treating with clay, 2) seems to have only run one of the tests for mold toxicity (C4A), and 3) sounds like she didn't test for MARCONs. It's great that she brought up mold, as I think it is a common but hidden roadblock to successful Lyme treatment, but I think you want to work with someone who really knows this area well. Feel free to PM me if you want to talk more about this. We've learned a lot in the last year, but it's hard to communicate it in writing. It's very complicated.

Bumping for new members and anyone else who might not have see this. This company makes generic antibiotics as well as a generic for Valtrex. There is a link to a list of their drugs in the article.

Just wanted to check, given the problems you mentioned above - she's not on the generic for Valtrex, is she? There was a post a few months back about a generic drug company (forget the name right now) that had been investigated by the FDA for falsifying test data and distributing impure/faulty generics. Valtrex is one of the drugs they make a generic for. I'll bump the post in case you or anyone else didn't see it. Also, when you tested for Lyme, did you see an LLMD and get a full evaluation, including testing for all possible co-infections?

Jean, Have you had her evaluated for Lyme and co-infections yet? If she isn't getting well, I would look into this next. I think you mentioned at some point that you have a bipolar diagnosis? If you have health problems, that can be a clue to what's going on with her, and I would suggest that you have yourself tested for Lyme and co-infections as well. Bipolar can absolutely be a presentation of Lyme - I met someone recently who'd lost her bipolar diagnosis after Lyme and mold treatment. In your daughter's case, the early joint pain, allergies, problems with antibiotics, and inability to gain weight, in addition to the psychiatric symptoms are all red flags for Lyme. The tests for it are unreliable, so it's important to find someone who knows how to identify and treat it and have them do a full evaluation. If she's been off antibiotics for over a month, I would recommend the Advanced Labs Culture, which doesn't rely on the immune system response to detect Lyme, but looks for the actual bacteria in culture. Hang in there and keep looking. You will find the answer.

I fully agree with mdmom - this is a very imortant point. There is a hidden war going on against doctors who diagnose and treat outside the AMA/IDSA/insurance company box. PANDAS, Lyme, and integrative doctors all fit in that category. Please protect your doctors and only use initials/locations. One of our Lyme doctors has the state health department after him now, and he is a responsible doctor who has saved many lives. This is REAL.