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NancyD

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  1. Like
    NancyD got a reaction from MomWithOCDSon in Autoimmune Breakthrough - British Study   
    LDI is still relatively new - only about 3 years. Low-Dose Allergy (LDA) Immunotherapy has been around for many years. I don't know of any PANDAS/PANS only doctors doing LDI. There are many integrative doctors who treat PANDAS/PANS children who are doing LDI. Quite a few PANDAS/PANS children are having great success with a combination of LDI strep and LDI Lyme once they hit their core dose. Treatment (either subcutaneous injection or sublingual drops) are every 7 weeks and the cost is very minimal - ~$25-$50/dose depending upon the doctor. Insurance does not cover. The trick is to start at a very diluted dose and go slow. If you have no reaction at all in about 7-14 days you can go to a lower number (less diluted dose) until you find your core dose. If the dose is not diluted enough and you flare you must wait 7 weeks for your immune system to reset itself and administer at a more diluted dose. Once you reach your core dose you administer every 7 weeks but you can give a booster (1/2 dose more diluted) in between doses. You can also administer other LDI or LDA antigens in between. There is also LDI autologous where they take your sinus drainings or stool or urine samples and mix very tiny miniscule amount with beta glucuronidase to create your own personalized antigen. We don't know how long you have to take this since it's only been around for a few years but theoretically you should be able to wean off this slowly once your immune system is balanced - perhaps do a treatment annually. Many people are having great success with LDI.
  2. Like
    NancyD got a reaction from MomWithOCDSon in Autoimmune Breakthrough - British Study   
    No, not donor antibodies. LDI is a form of immune desensitization that combines an enzyme called beta glucuronidase with minuscule amounts of antigens relevant to your medical condition. The enzyme makes T-cells pay attention to the antigen, down-regulating the immune response to that allergen. The Lyme mix contains over 70 strains of pathogens - dead antigens mixed together with sterile water and combined with beta-glucuronidase prior to administration. They are in highly diluted concentrations - different concentrations are given depending on the sensitivity of the patient. A dilution of 6C would be a 1,000,000,000,000 dilution of the antigen. The higher the number, the more diluted the concentration.
     
    LDI is also used for strep, yeast, mold, mycoplasma, foods, chemicals, and environmental allergens.
  3. Like
    NancyD reacted to Cleopatra in Would IVIG skew Anti-Strep O & Anti-DNase B titers?   
    Any MD will tell you that it takes 3-6 months post IVIg for titers to be accurate. The IVIg definitely skews the results. It's supposed to.
  4. Like
    NancyD got a reaction from PAmama in Memory problems   
    Has she been tested for Lyme and other TBIs? This is a hallmark symptom.
  5. Like
    NancyD got a reaction from Pbmom in Cannaboid OIl-RESULTS!   
    Thank you for sharing your experience with CBD Hemp Oil, t_anna. I have been considering it for some time for DD's anxiety/OCD while we treat Bart/Babesia. It was just the push I needed to order some from Bluebird Botanicals. Just received ours today and will give first dose tonight. Is there any reason I can't put the drops in a teaspoon of cranberry juice and have her hold it under her tongue for 60 seconds? Will this dilute it too much? Our doctor suggested we start with 5 drops BID, then increase to 10 BID, then 15 BID.
  6. Like
    NancyD got a reaction from EAMom in New interview with Dr. Wakefield   
    Excellent interview. Thank you for sharing, eamom!
  7. Like
    NancyD reacted to putting together the piece in Low Dose Immunotherapy on East coast?   
    Sent you a pm.
  8. Like
    NancyD got a reaction from Hrosenkrantz in 5 months of ivig, hasn't helped.   
    I am SO SORRY to hear you are getting no help from IVIG! My DD18's OCD got worse with each infusion. The more treatments we tried the sicker she got until she had to leave school in her junior year. She has been home in bed for 18 mos. I have seen her experience so many of the things you write about and it breaks my heart. No one should have to go through this! My DD was recently dx with mold toxicity and the main focus has been on clearing her detox pathways. Last month she had a PICC line inserted for IV abx and recently she started the PK protocol - mentioned above in SF Mom's post. WOW, for the first time in 18 years of trying one treatment after another, we saw an overnight difference in DD when we switched from the more generic Phosphatidyl Choline to Essentiale N that Patricia Kane recommends. For DD, I'm hoping this will be key to getting her well.
     
    Like you, we have seen one doctor after another. We have traveled all over the country looking for answers. We finally found a practice in CA that does not seem daunted by my DD's complex health issues. After the initial visit in person we do all follow-up visits by Skype every 3-4 weeks. When I need an urgent response I get an immediate email or phone call back. I'm not left waiting days or weeks to hear back. The doctor is compassionate, responsive, thorough, and very creative in her thinking. Moreover, she doesn't focus on just one piece -- she addresses EVERYTHING and very methodically. I have searched years for a doctor like this! If you would like to know the name of this doctor or practice, please PM me.
     
    My heart goes out to you!
  9. Like
    NancyD got a reaction from sf_mom in 5 months of ivig, hasn't helped.   
    I am SO SORRY to hear you are getting no help from IVIG! My DD18's OCD got worse with each infusion. The more treatments we tried the sicker she got until she had to leave school in her junior year. She has been home in bed for 18 mos. I have seen her experience so many of the things you write about and it breaks my heart. No one should have to go through this! My DD was recently dx with mold toxicity and the main focus has been on clearing her detox pathways. Last month she had a PICC line inserted for IV abx and recently she started the PK protocol - mentioned above in SF Mom's post. WOW, for the first time in 18 years of trying one treatment after another, we saw an overnight difference in DD when we switched from the more generic Phosphatidyl Choline to Essentiale N that Patricia Kane recommends. For DD, I'm hoping this will be key to getting her well.
     
    Like you, we have seen one doctor after another. We have traveled all over the country looking for answers. We finally found a practice in CA that does not seem daunted by my DD's complex health issues. After the initial visit in person we do all follow-up visits by Skype every 3-4 weeks. When I need an urgent response I get an immediate email or phone call back. I'm not left waiting days or weeks to hear back. The doctor is compassionate, responsive, thorough, and very creative in her thinking. Moreover, she doesn't focus on just one piece -- she addresses EVERYTHING and very methodically. I have searched years for a doctor like this! If you would like to know the name of this doctor or practice, please PM me.
     
    My heart goes out to you!
  10. Like
    NancyD got a reaction from tu4four in Supplements that INCREASE dopamine levels   
    I started researching ways to decrease DD's dopamine levels, which are exceedingly high, and I was surprised to find that the following increases dopamine: vitamins D, B6, B12. Also Omega 3 in high doses, l-thiamine, ginkgo biloba, fava beans, pine bark, and grape seed. That explains why D3 causes my DD to rage. And when we doubled her Omega 3 dose a few years ago she became more dysregulated. B12 injections were problemsome. She also takes B6 and Methyl-B12 sublingual for MTHFR 677++, so now I must figure out whether they are adding to her regulatory issues. Then, if I eliminate them, will it affect her methylation cycle??
     
    Has anyone else researched this? I know there are some parents who have commented that their children cannot take D3. Do they have high dopamine levels too?
     
    Thought I would start an exploratory discussion on this topic.
  11. Like
    NancyD reacted to JoyBop in How is ART form of muscle testing done?   
    We had muscle testing done on my son several years ago after exhausting every other possible avenue to dx my sons bizarre and severe GI problems. I had several friends that swore this doc was incredible at diagnosing. But I hVe to say, it was a total waste of to r and money. He basically took a full history then put my son through a series of "tests" and made some guesses based on the history I told him. I suppose there could be legit practitioners out there but our experience was not helpful, laughable in fact
  12. Like
    NancyD reacted to LNN in Helpful Threads & Links for PANDAS   
    Using 23andMe data to get guidance on your child's methylation issues.
     
    This info may change as new apps or knowledge evolves but at the moment, this is what I'd suggest if you're just getting started with methylation... Hopefully others will share additional sites and articles and then we can pin this to the top of the forum.
     
    For background info, I've found the following articles helpful:
    http://autismnti.com...o_Education.pdf - a good "methylation for dummies" resource
    http://forums.phoeni...arts-1-7.11488/ - the writings of Rich Van Konynenburg, who died in 2012 but did a lot of research to help the Chronic Fatigue community by taking Yasko's ideas and applying them to those with CFS who needed a practical approach and may not have a local doctor's support
     
    Once you get your 23andMe data, do the following:
    1. Log into 23andMe and go to the tab that allows you to download raw data. Download onto your hard drive. (this will be a zipped file)
    (suggestion - also copy this zipped file onto a flash drive and store it in a safe deposit box or in a second location so you'll always have access to it - helpful as knowledge evolves and a decade from now, you want to explore the data in a new way. But realize it contains highly personal info and guard it appropriately).
     
    2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but I support the author's request for a $10 donation. The labor she's saving you is immense and I personally think she deserves the modest compensation. There are two profiles you can run - the methylation profile and the detox profile. I'd run both but I personally use the methylation profile more often.
     
    3. Print the reports. Before you leave the screen that shows your results, hit "ctrl + print screen" or "ctrl + a" then "ctrl +c" to capture the data. Then go into a new Word document and hit ""ctrl + v" to copy this data into a Word document you can save. That way, if you lose the paper report, you have it electronically.
     
    3.b. There are other apps that provide similar info plus additional analysis. One is found on http://www.mthfr.net and another can be found on www.mthfrsupport.com, which has developed an app called Livewello that has additional capabilities. Always make sure you understand how your data is handled and what you're agreeing to when you use an app like these. I've only used apps that say they delete your data immediately after running your report. No way to verify this of course, but do use these apps with an understanding of the privacy issues.
     
    4. To interpret your report, I'd use this doument - http://www.heartfixe...trigenomics.htm It's a bit old - written in 2008. So the understanding of these genes may have evolved. But it's the best layman's practical guide I've found so far. It's worth reading all the way through and then, for simplicity, I've taken the document and copied it into Word. Then I deleted those sections that didn't apply to my results. I also deleted the extra things like recipes. I was left with a report that only addressed the genes where I had issues. Then I re-read this shortened document and highlighted specific author recommendations, such as "those with this gene mutatin should avoid x, y, z and supplement with a. b. c." This gave me a customized roadmap.
     
    Applying the information in this heartfixer document can take some time and require some trial and error - and additional research. It takes awhile to look at the big picture of your unique gene combos to determine if you need a lot of methyl donors or only a few. Many of these methylation genes effect one another and either magnify or counteract each other's effects. You also need to research the supplements that are suggested. For example, Yasko and Roberts (the author) both suggest Yucca for those with a CBS mutation. yet Yucca is estrogenic, meaning it acts like an estrogen supplement. So I'd be personally uncomfortable using this supplement, especially without a doctor's guidance. While I resepct the knowledge of these experts and am forever grateful for their ideas, you still need to do your own research and understand the full range of effects any supplement can have. At the present time, Yasko is revising her views on the CBS gene and backing away from the role it may play in ammonia. So always check that the things suggested here are still the current thinking on the subject. It's a rapidly evolving field.
     
    5. You now have an outline of what things to supplement and what to avoid. It's currently suggested that you start by addressing CBS and SUOX mutations, as these effect detox and you don't want to re-start sluggish cycles upstream without having a clear detox pathway. A good overview of the steps to take, in what order and why, is in Yasko's book http://www.dramyyask...pdf_02_file.pdf I've used this as an outline but confess that I had to read it in small doses. Aside from addressing CBS first, my personal experience is that it's been best to address the remaining mutations as a group, rather than supplementing for one mutation at a time. For example, rather than supplementing only for MTHFR and then moving on to MAO-A, I added small doses of various supplements for each, to try to find balance.
     
    Always, always start at ridiculously small doses and always introduce only one supplement and wait a few weeks before adding in another. Otherwise, you'll have no idea what's causing a negative response and you'll need to start from scratch. To put things in perspective in terms of dosing, you may read that an adult typically uses 800mcg of methylfolate if they have MTHFT issues. But I know one child who does best on 67mcg every other day and one who needs 10mg every day. It can be very trial and error in terms of dosing. As a very general rule of thumb, I've been able to tell if something's having an effect within a few days to a few weeks. When I've crossed the line and dosed too high, I've seen an increase in the same symptoms I was trying to eliminate and I've stopped or lowered the dose for a few days/a week and then seen things calm down again. It's great if you can work with a doctor when developing your regime but make sure that doctor is well versed. I've seen some doctors mean well but give some really uninformed advice. There's a list of practitioners who do consults on www.mthfrsupport.com and some of these practioners participate on the mthfrsupport facebook page. But do realize they are not all MDs. Some have other degrees that allow them to call themelves doctors, such as a chiropractor. But verify their credentials and make sure you're comfortable with their training.
     
    Here are some other good sites I refer to often:
    http://mthfr.net/ - on this site is a good article explaining the different forms of folate http://mthfr.net/l-m...thf/2012/04/05/ and suggestions on what to do if you "overdose" on methylfolate while trying to dial in on what's right for you http://mthfr.net/ove...udy/2012/06/27/
     
    A good comparison of 23andMe vs. the testing Yasko does http://www.mthfrsupp...nel-or-23andme/
     
    A good article on why MTHFR isn't the end of the story http://www.mthfrsupp...of-methylation/
     
    the impact of mold on methylation http://www.mthfrsupp...xins-and-mthfr/
     
    MTHFR and thyroid http://mthfr.net/mth...ers/2013/07/18/
     
    Source to create a custom vitamin/supplement: http://www.vitaganic.com/
  13. Like
    NancyD reacted to PowPow in Can someone proof read a letter to Dr. N. at NYU for me?   
    Trinity,
    Have you looked up rett syndrome?
    Or forme fruste rett syndrome?
    are you getting the EEG soon?
    Can she read, is she intellectually normal? Growth normal?
  14. Like
    NancyD got a reaction from PowPow in Rubella titers   
    Had DD's rubella titers tested many years ago along with measles titers and they were both very high so we were exempt from MMR boosters. I also tested my own at the time (just out of curiosity) and they were equally as high.
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