mama2alex

We are going out there the first 3 weeks of April, unless we see some kind of miracle on the school refusal front. We are also scheduled with Dr. Rahman. We are just going for CBT, not medical treatment. That has to be requested and scheduled separately, so if you need that, I would call asap and see if they can fit you in during your visit. We have good medical doctors here, but have not found a great therapist who can help us get over this mountain. There are a number of past threads about Rothman with good detailed info - have you looked at those?

Also, what is his IgG titer for Epstein Barr virus? If its high, this could indicate chronic infection, according to our doctor. My son had all the symptoms of Mono this Fall, but his IgM was normal. IgG had more than doubled since 4 months previous, when we just happened to test for it. Not sure if the chronic form can cause enlarged spleen, but worth looking into, in addition to Babesia. Our LLMD gave us herbals to fight the EBV, so there are ways to push it back. On the strep issue, are his titers elevated? Has the whole family been tested? I'm sorry you are having to deal with this.

Hi Christianmom, Yes, I had IV-DMPS about 9 years ago. I was very ill, and a urine challenge showed off the charts mercury. It took many treatments, but I did get well. I don't remember all the details of the treatment, but here are a couple of important things to know. If your son has ANY amalgam (silver) fillings, he should not be doing any form of chelation. If this is the case, PLEASE stop treatment for now and have his fillings replaced with a non-metal alternative. You can PM for info about that. Also, IV-DMPS or any chelation can feed yeast and cause a flair. I ate a no-sugar diet during my treatment and this helped prevent yeast. It sounds like he is doing well, so in all likelihood you have nothing to worry about. There are some scary things written about chelation, but if your doctor is experienced and careful, its safe. Have you read "Children with Starving Brains" by Jaquelyn McCandless? It goes into a lot of details about heavy metal poisoning and what it does to the body - I found it very helpful when I was going through chelation.

Thanks John. We are only relying on ERMI testing as a general guideline as to whether a given residence is safe for me. We are working with a company, but they are waiting for us to move out and start our remodel. We are going to open enough walls anyway that it makes sense to piggyback the search for hidden mold on the remodel. We also have visible mold that we uncovered just before Christmas, as well as major ventilation problems we've identified since starting to look for mold.

Michael, Sorry I didn't see your post earlier. Our doctor said that the Thieves "neutralizes" the mold toxins temporarily. I don't know the details of how that's supposed to work. We tried it and our ERMI score went down enough that he was willing to start treating me while we're transitioning out of our house. We diffused it - using on of Essential Living's diffusers - for 3 days straight. We covered our piano and tv/speakers, but didn't find any info telling us whether we needed to do this or not. We stayed somewhere else during the process - the essential oil smells a lot like cinnamon, and its a nice smell, but it gets overwhelming quickly and our son has asthma, so we didn't risk it. Doc said once you do the initial treatment, you should diffuse for 8 hours once every 3 weeks. I didn't find any residue afterward. Here's the link: http://www.youngliving.com/en_US/thieves I don't consider this any kind of permanent solution, but more of a helper to allow me to be in the house and help with the move. Also, I'm planning to use it in the apartment where we'll stay during our remodel/remediation, just as extra insurance. Here's another site my dh found today. I found it interesting and plan to read more on it later: http://blacktoxicmolds.com/ Good luck with your remediation. Would love to see updates!

Why did you leave your house to "run from mold?" Did you find some in your house? Have you done mold-specific blood tests such as HLA-DR, MSH, VEGF, C4A, etc to try to determine whether she has mold toxicity? Even if you've left a moldy building, you still have to pull out the mold toxins, if this is an issue. I agree with others - you should take a good look at this. Especially since you've mentioned that she has pretty severe memory issues - this is a classic symptom of mold toxicity. I doubt its her only problem, but if its part of the problem, you could get her toxic load way down fairly quickly and probably see some improvement from that. My doctor won't treat the Lyme until he's addressed mold toxicity. Also, have you had her nose swabbed for Staph? I'm really sorry things are so tough again. Please let me know if you need some guidance on the mold. I am in the middle of it right now, so I've learned some things and know how tricky and difficult it is.

Hi and welcome. I'm so sorry your daughter is going through this. It is beyond heartbreaking. So much of her story sounds like my son. He also had "something" going on for years - possibly since birth - before he had his sudden severe onset of PANS/PANDAS just before he turned 9. He also suffered with severe separation anxiety and was homebound at two different times. No history of strep or scarlet fever, but he had 5 bouts with pneumonia. His sudden onset came with the 5th. I wanted to let you know that many kids on this forum have Lyme, and although your doctor checked for it a couple of years ago, you should not assume she doesn't have Lyme. The standard test, which your doctor most likely used, doesn't look at some of the proteins most specific to Lyme. And I assume she didn't check for any coinfections. And its a test based on immune response, so its flawed. Some people's immune systems don't mount a response that shows up on the test, and/or the Lyme can hide from the immune system. Our son didn't really start on the road to recovery until we got a second opinion from a Lyme doctor and started treating him for Lyme and coinfections. This is not the case for everyone, but enough that I thought it was worth pointing out, especially given where you live. There are other issues that can contribute, including heavy metals, mold toxicity, methylation issues, KPU, immune deficiency, vaccine reactions and probably other things I can't think of right now. I don't want to overwhelm you, but I think its better to know up front that this is not a simple illness. Read as much as you can and you will figure it all out and get her better.

Wow! Good for you for figuring this out!

I was going to mention heavy metals too. When I had mercury poisoning some years ago, I dropped a lot of weight and couldn't gain it back even when I worked with a nutritionist. Once I went through chelation I naturally popped back up to my normal weight. It was, as SF Mom mentioned, an absorbtion problem caused by the mercury.

I agree, a urine test is best. Heavy metals don't hang out in the blood and hair is unreliable. If your kids aren't good excreters and/or have problems with their methylation cycle, the metals may not show up in the urine without a chelator, so keep that in mind. Also, if your kids have any amalgam fillings, they should not take any chelator, such as DMSA, DMPS or EDTA, until the fillings have been safely removed. Amalgams are 49% mercury and the chelators will leach mercury from the fillings if they're left in. If at all possible, I'd go to a DAN doctor for this. It's not straight-forward, and it's better to figure it out with a doctor who has experience in this area. (Sorry, I know that's probably not what you wanted to hear.) A good book that talks about heavy metals and chelation is Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder by Jaquelyn McCandless. When I was diagnosed with mercury poisoning in 2003, this is the only decent book I could find on the topic. It was heavy reading at the time, but very good. She has a 2009 edition out now.

Thanks for sharing this! I couldn't get it to work very well on my computer, but will try to view it on dh's computer when he's back in town. I saw enough to get the gist though. I had a moment like this the other day when I met with the orthodontist about Alex's braces. I mentioned Lyme Disease and he told me they had a 17 year old patient who went on a father-son trip with his dad to Costa Rica and got a tick bite. He became extremely ill and died 3 weeks later. It reminded me that at least I still have my son, and have the opportunity to help him get well and live a full life.

My ds12, 80lbs takes 2 Florastor before bed. We've been doing this for at least 2 years. I used to give him Caprylic Acid to fight yeast, but have switched to Yeast-Cleanse by Solaray. It contains Grapefruit Seed Extract, so it wouldn't be an option for you right now, but I like it because it contains a variety -caprylic acid, Pau D'Arco, Grapefruit Seed, Garlic, Licorice and Tea tree Oil. There might be a product like that without the GFS extract, not sure. I think its a good idea to switch it up periodically - I know I don't do this enough. Thanks for sharing your story. I'm glad she's doing so well!

Glad you are seeing a little progress and you like your doctor. It worried me a little, though, when I read that you'd stopped probiotics. The immune suppression of the steroids plus the antibiotics in there killing off the good bacteria, sets up a perfect environment for yeast to flourish. Have you tried different probiotics to see if any of them don't cause tics?

Good tips! We have a front loader - is it similar?

I wanted to ammend my first post on this. I just saw my doctor again and I'm about to start on full-dose cholestyramine. He is now saying to take it 3 hours or more after eating and then wait at least an hour before eating and then wait another 1/2 hour before taking supplements. Not sure why he changed his recommendation - maybe because I had been on a small dose twice a day and will not be on full dose 4 times a day.

I also just went through this. I've gotten rid of the kids' mattresses, and still have to get rid of my antique furniture (I really should do it sooner than later, but I've been trying to figure out a way around it, and we are still dealing with insurance.) I also still have to replace my own mattress. I wish I could do this all at once, but we already spent over $20K, and most of it out of pocket! Do not use bleach. It kills the mold, but even dead mold can be toxic. We washed all our clothes in the washer on hot water with soap, then dried it in the dryer. Spent a week doing all of it. We then put it straight into plastic bins that we had just purchased, and washed out really well. We drycleand whatever needed dry cleaning, but did it with organic cleaning. I agree with throwing out whatever cannot be completely washed down. To kill mold, you can use thyme oil...I can't give the name of the product, but it is available online. BUT...keep in mind not to use too much, AND, some people get burning in their lungs from it. We did, and it was a problem. The information we were told, and what is published online is that it can't hurt you. It can, but it also kills mold. On the other hand, personally I think that just washing down non-porous objects with soap and water, and doing it repeatedly will get it off. That's what I did with my personal items. Yes, this is why his suggestion to use bleach didn't really make sense to me. Because we are worried about the toxins, not just the mold itself. Not to mention the fumes from bleach would probably make me sicker. We are using Thieves Blend from Young Living and diffusing it in the house every few weeks until we are completely out of here. Thanks for your suggestions!

Thanks! I did and she is giving me a lot of help.

Thanks for all the suggestions LLM. I'll definitely check the washing machine. Someone else suggested washing clothes at a laundra-mat before moving them to the new place, but I don't know. There's always the chance that building is moldy, or their washers are moldy, or people could be coming in from moldy homes and bringing the mold toxins, so I'm not sure its worth the extra work. We have already diffused our house with Thieves Blend b/c our doctor said it "neutralizes" the mold toxins temporarily. We did it for 3 days straight and will now do 8 hours every 3 weeks until we are completely out. I don't know exactly what that means, but it did pull our ERMI score way down, so it does have some effect on the mold. And you do NOT sound like a paranoid nut! Read one of Shoemaker's books and you will realize any and all paranoia around mold is completely warranted. I've read Shoemaker's web site, but great idea to email Scott! I hadn't thought of that.

We are getting ready to move out of our house. We take possesion of an apartment tomorrow and will ERMI test it before moving in. My doctor says we can take hard furniture, clothes, dishes, cookware - anything that can be washed. He said to wash with bleach, but I've read not to use bleach on mold, so I want to be sure we're doing this right. Its hard enough (and expensive enough) to do this once - I don't want to have to do it a second time. Not to mention I'm very sick, and want to get well as quickly as possible! I'm wondering if others have experience with this and what you used to wash clothes, furniture, etc. We will just run our dishes, utensils and pans through the dishwasher, per Dr. Shoemaker's website. But I haven't found a lot written about how to best wash other things so you don't contaminate the new home. Any tips, experiences and/or resources would be much appreciated. I'm also posting on the Lyme forum.

We are getting ready to move out of our house. We take possesion of an apartment tomorrow and will ERMI test it before moving in. My doctor says we can take hard furniture, clothes, dishes, cookware - anything that can be washed. He said to wash with bleach, but I've read not to use bleach on mold, so I want to be sure we're doing this right. Its hard enough (and expensive enough) to do this once - I don't want to have to do it a second time. Not to mention I'm very sick, and want to get well as quickly as possible! I'm wondering if others have experience with this and what you used to wash clothes, furniture, etc. We will just run our dishes, utensils and pans through the dishwasher, per Dr. Shoemaker's website. But I haven't found a lot written about how to best wash other things so you don't contaminate the new home. Any tips, experiences and/or resources would be much appreciated. I'm also posting on the PANDAS forum.

I am on a low dose of Cholestyramine (CSM) for mold toxicity, but will be going on the full dose as soon as we move out of our house, so I'll tell you what I know so far. My doctor has me take it on an empty stomach, at least 3 hours after eating, then eat a meal with a fair amount of fat in it - eggs, oils, meat, yogurt, avocado, nuts, etc - 1/2 an hour after taking the CSM. I can take supplements 15 minutes after eating. Full dose for an adult is 1 scoop 4 times a day. I believe children are dosed 3 times a day according to weight (read this in Shoemaker's first book). CSM can cause constipation or reflux, so watch for those. It can cause a herx in certain individuals, but I'm not sure what factors affect this - maybe having Lyme, not sure. If your dd (possibly) had that severe of a reaction to mold exposure, I would consider testing to see if she is genetically susceptible and whether she is showing markers for biotoxin illness. The HLA genetic testing shows whether a person is genetically susceptible to mold, Lyme or both. For example, I am susceptible to mold, but not Lyme, and my ds is susceptible to both. This means that my body can detox Lyme toxins, but not mold toxins. His body can't naturally detox either one. This is important because it means you can kill the Lyme, but the toxins will circulate in the body indefinitely causing inflammation and illness. For mold, it means you can leave the moldy environment, but the mold toxins will continue to make you sick until you pull them out with CSM. Markers for actual biotoxin illness include MSH, ACTH, MMP-9, VEGF, VIP, C4A, etc. These are described on the Surviving Mold website: http://www.survivingmold.com/diagnosis/lab-tests Also, if anyone in the family with the moldy bathroom is having health problems, you should point them toward this information. The toxins given off by the mold will not leave the house just because they remediated the bathroom. They should do an ERMI test on their house to be sure its all gone. Here's a good starter video on mold/biotoxin illness by Dr. Neil Nathan in Santa Rosa, CA: http://archive.org/details/4863-1-mcdhWellnesslecturemoldtoxicitydrnathan1 I am reading Mold Warriors, Dr. Shoemaker's first book on mold/biotoxin illness, and although he's not the best writer, it has a lot of great information that I'm finding is relevant to both mold and Lyme illness. One more thing - if they find any plaques on her brain, this can be caused by biotoxin/mold illness, so it wouldn't rule it out.

My doctor is submitting me for this study. His office said we have to tell Advanced Labs when I was last on abx and what I took. I assume my doc will also give them a summary of my history. They said Advanced Labs is going to pick only 20 patients for the study, so its competitive to get the free test!

Not sure if this is what you're looking for, but here are a couple of blog posts by Dr. Jerry Kartzinel about the GF/CF diet and autism: http://www.generationrescue.org/dr-jerry-s-blog/biomedical-intervention/let-s-talk-about-dairy-and-going-gluten-and-casein-free-part-1/ http://www.generationrescue.org/dr-jerry-s-blog/biomedical-intervention/let-s-talk-about-gluten-and-going-gluten-and-casein-free-part-2/

Hopeny, Wikipedia says this about the urine NOT turning orange on Rifampin, so you might want to check in with your doctor: "Taking rifampicin can cause certain bodily fluids, such as urine and tears, to become orange-red in color, a benign side effect which can be frightening if it is not expected and prepared for. This effect may also be used to monitor effective absorption of the drug (if drug color is not seen in the urine, the patient may wish to move the drug dose farther in time from food or milk intake)."

GSK's H5N1 vaccine containing the same adjuvant (AS03) that is implicated in the narcolepsy cases, was just approved for use in adults in the U.S. From this article: http://www.cidrap.umn.edu/cidrap/content/influenza/panflu/news/nov1512vrbpac.html "On two unanimous votes, the Food and Drug Administration's (FDA's) Vaccines and Related Biological Products Advisory Committee (VRBPAC) said the immunogenicity and safety data on GlaxoSmithKline's (GSK's) H5N1 vaccine are adequate to support its licensure for use in adults. The aim is to strengthen the US stockpile for the threat of an H5N1 pandemic." This happened two months ago. "Adult" is defined as 18 years and up. Also very interesting: From the Reuters article on the Narcolepsy cases, "Research has found that some people are born with a variant in a gene known as HLA that means they have low hypocretin, making them more susceptible to narcolepsy. Around 25 percent of Europeans are thought to have this genetic vulnerability." From Better Health Guy's article on Lyme and mold toxicity: "There are specific genotypes associated with specific susceptibility to biotoxins. For patients with Lyme disease or mold exposure, approximately 25% of the population has a genetic predisposition which results in an inability to clear biotoxins naturally. Understanding whether or not one is in this population can provide key insight into the cause of illness. Though the result may suggest a genetic make-up which cannot itself be corrected, once known, specific interventions can be put into play that may significantly improve the outcome. The test is called HLA DR and it is commonly known as a test which provides insight into possible organ rejection after a transplant operation. Human Leukocyte Antigen (HLA) is a grouping of genes that lie on chromosome 6. In the case of biotoxins, HLA codes for whether or not a person is capable of clearing biotoxic substances following an exposure. For these people that are genetically incapable of clearing these toxic substances, biotoxins will continue to circulate within the body indefinitely and may reduce one’s chances of recovery." From the Stanford Center for Narcolepsy: "HLA genes are very important systems to keep the immune system in check." and "How is HLA involved in narcolepsy? No one knows for sure. A large number of other diseases (>80) like Multiple sclerosis or Juvenile Onset (type I) Insulin Dependent Diabetes Mellitus are also associated with specific HLA subtypes. Most of these diseases are autoimmune disorders." Made me wonder if there's some connection via HLA...