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searching_for_help

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  1. Sorry about the above paragraph with no breaks! I always put space between my paragraphs, but for some reason my posts will not post correctly on this forum.
  2. We had one doc tell us high B12 levels on testing can be unreliable. Also, the doc in the book, "Could it be B12?" (by Jeffrey J Stuart and Sally M. Pacholok) says that patients with intestinal bacterial overgrowth often have falsely elevated serum B12 levels. Of course there are other factors, but this would be a big one with most of our kids. He also states repeatedly that the lower limit for this test is far too low. Pg. 218 "At this time, because the lower limit for the serum B12 test is too low, we recommend two options for clinicians: 1) clinical exam and use of the serum B12 (treating symptomatic patients in the gray zone - B12 <450pg/ml); or 2) clinical exam and use of both the serum B12 and urinary MMA (Methylmalonic Acid) for patients who present with symptoms consistent with B12 deficiency. If either test is abnormal (or the serum B12 is in the gray zone), treatment needs to be initiated." They also believe normal serum B12 levels should be greater than 550 pg/ml. "Elevated levels of MMA indicate B12 deficiency." (They prefer the urinary MMA over the serum...) The urinary MMA is on the Organic Acids Test (OATS). We had ours done through The Great Plains Laboratory.
  3. I really don't know about mold affecting the CD 57, but PANDAS kids are notorious for reacting to anything! I've read on forums that, when treating for Lyme, the CD57 numbers usually go down before they go up, but 3 years seems like a long time to me. I don't think the medical community really knows what all affects the CD57 numbers. It's supposedly things bacterial (viral infections often RAISE CD57). I've heard Lyme, mycoP and HIV can affect the CD57 numbers. This pdf is really informative. "Leading Experts Gather to Decode the Mystery of Chronic Illness". http://www.publichealthalert.org/uploads/2013_1.pdf pg. 6 "CD57 is often a useful screening test, but is not always useful in tracking progress as it stays low until the very end and then rapidly rises." "When CD57 is below 20, this suggests multiple coinfections." (So maybe there is more going on...) Hope someone else can jump on and help out. Our dd CD 57 is very low, also. We're just now starting treatment for mycoP. BTW, she did test positive for mold allergies, as well.
  4. I know that mycoP is hard to irradicate, but has anyone seen any improvements in behaviors very soon after starting treatment, or do we have to wait, wait, wait for any relief of these symptoms? She's on Doxy for mycoP and Nystatin for gut stuff. (Also some herbals for viral issues.) Being PANDAS, I'm sure there is more lurking in there, but this is what we're working on now. Just curious if anyone saw some relief from anxiety, intrusive thoughts or OCD quickly after beginning treatment. We need a little hope here!
  5. We use the All-in-One from holistheal.com. It's Amy Yasko's line. In the multi - she uses the better (bioavailable) forms. I know I've seen another one recently that also had the better bioavailable forms, but I can't remember what company it was. Next time I'm out shopping, I'll try and track that one back down. (It was a specialty store, not a regular department store.) http://www.holisticheal.com/all-in-one-multi-vitamin-mineral-120-capsules.html She doesn't use the cheap B12 or B6 - many of the vitamins listed are in the more bioavailable forms.
  6. The HPV is one vaccine that I would not consider. My daughter actually researched this one herself for a college class, and she shared the info with my husband (who is pro-vaccine, and actually gives flu shots) - and after he read about it, he was against her having it. This is highly unusual for him! Suzy Cohen is a pharmacist of 22 years, and she has a good article on why she wouldn't have her girls get it: http://www.dearpharmacist.com/2009/03/31/gardasil-vaccination-big-decision-for-your-little-girl/
  7. Would some of you please let me know what you've used that's affective in minimizing herx reactions? We just started some new abx, and expecting things might get a bit rough in the next few days. Thanks so much!
  8. Would some of you please let me know what you've used that's affective in minimizing herx reactions? We just started some new abx, and expecting things might get a bit rough in the next few days. Thanks so much!
  9. Thanks for sharing this info. My daughter's gut is a mess, I'm assuming it started early on when she was young and having lots of strep issues. I find this all so difficult to figure out, because my daughter has all the symptoms of very low serotonin, so she was put on a low dose of Luvox (fluvoxamine), yet when we had her neurotransmitters tested, she is off the charts HIGH in serotonin! (Dangerously so...) It's like she's unable to utilize it properly,(maybe not enough receptors to use it all?) so we are backing off of her dose slowly, and going to eliminate the SSRI entirely. It was quite a shock, and certainly none of her results have been what we've expected, so sadly been treating incorrectly. Everyone is different (that's what makes all of this so difficult!). The answer to all of this is getting the gut back in shape so it can do it's job with the neurotransmitters and absorb our nutrients properly. (I know B12 plays a role in serotonin...) Sadly, getting the gut back working properly is the HARD part! But SSRI's might be a handy bandage for some, until they can get their gut health back in shape - I just wanted to point out that it isn't for all. Source Naturals makes a Coenzymate B Complex that is sublingusl that goes directly into the bloodstream (bypassing the bad gut), and a deficiency in B vitamins (especially B12) is associated with mood disorders. This is a good (short)article about B12, omega 3's and SSRI's. Sounds like taking a B supplement (sublingual in my opinion) can even help the SSRI do it's job more affectively, for people that want to go that route. http://www.livestrong.com/article/528436-vitamin-b12-ssris/
  10. Our daughter has had anorexia and OCD/anxiety/intrusive thoughts for 10 years. She has been diagnosed with PANDAS. I'd like to say that we are in a good place, but we're not, YET. We just got back lots of test results, and it's clear that her gut is a big problem. She had strep all the time when all of this first started. But it looks like MycoP might be one of the things we are dealing with. And clostridia in the gut. (But she does have a bit of strep in the gut that no one has seemed concerned about... Hmmm...) The testing shows majorly screwed up neurotransmitters (doc said it looks like "Brain of fire"), low amino acids, high cortisol, adrenal fatigue, problems with pancreas, low in important vitamins and nutrients, etc. Basically, the more I read it sounds like infection/inflammation can screw up all of these things, and if the gut is not working properly (leaky gut), and hers isn't - you can't utilize properly what your body needs. This can directly influence your neurotransmitters, which play a huge role in how they feel and deal with things. (Yep, you vegan/vegetarians out there - you DO need to supplement with B12 or your serotonin availability will be a problem...) So, our next step is to treat the infections (clostridia in gut and mycoP with doxy), and I'm supplementing with unreal amounts of stuff to keep her as healthy as I can until her gut is working properly. (I buy sublingual when I can, to bypass the gut, but this is also difficult as she has to know the calories in EVERY SINGLE PILL... urgh!) She is compound hetero for some MTHFR mutations, she has all the snps for screwed up BH4, hetero for some CBS and COMT snps, and also is homo for MAO A, so we supplement for those, and strangely, we just found out she is high in zinc and low in copper. I thought that was weird, usually anorexics are low in zinc... so I have to get that straightened out. She seems low in lots of things that mycoP scavenges, so this is really a challenge. But I believe that if we can get rid of the myco and heal the gut she'll be in a much better place. And she so desperately needs to be after all these years. We're all exhausted and she truly believes she'll never get over this nightmare. Queenmother, glad you mentioned the strep in the gut. Think I'll add more zylitol, just in case...
  11. http://www.ncbi.nlm.nih.gov/pubmed/20508824 "The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution..." I know there are plenty of sites out there to the contrary, but this info from PubMed might be helpful to take in to docs who won't consider chronic lyme.
  12. Dr. Jess Armine will be doing a blogtalkradio program on PANDAS tonight, 8 p.m Eastern. http://www.blogtalkradio.com/drjessarmine/2014/01/07/pandaspans-a-root-cause-for-psychosis-ocd-etc-in-children
  13. I know a lot of us have had problems with doctors not being open to the idea of PANDAS, Chronic Lyme, or anything else they're not aquainted with, and it's amazing the hostility some of them have toward the topics. Then when we find a LLMD, PANDAS or Intregrative Medicine doc willing to dig deep for the root cause, some mainstream allopathic docs sometimes refer to them as "quacks". For anyone interested, the link below I think is helpful in understanding what's going on in healthcare. We need to be aware that those running the show might not have our children's best interests at heart. http://www.nybooks.com/articles/archives/2009/jan/15/drug-companies-doctorsa-story-of-corruption/?page=1
  14. Just realized this was an older post. But I will pm you, mimimomma.
  15. I can pm you with the name of a nurse practitioner who tests for Lyme in the northern part of Indy. She's the only one who's been willing to do any testing for us.
  16. Also, I know it's hard, but you will have to make her eat. (Trust me, I totally understand it seems impossible...) Do everything you can to get calories in her. Once their weight spins out of control, you'll have no choice but to admit, and even though a regular hospital room with docs checking for infection and tubing if necessary would be ideal - that is NOT what happens, in our experience. Once they hear that anything mental is going on, they send them to a psych hospital or Eating Disorder clinic - neither which believe in infection driven PANDAS - in our experience. If you don't have access to a PANDAS doc (we don't), then maybe an LLMD or Integrative Doc in your area would help.
  17. I agree with dcmom. DON'T take her to the hospital. Our experience is they put them in psych ward and won't make them eat. So they sit through group therapy all day "talking" about their problems, that unbeknownst to the "professionals", is infection driven. These experiences make PANDAS kids worse - they often have separation anxiety to begin with, and you will usually get NO WHERE talking with the staff about PANDAS. You really need to find a PANDAS doc or someone willing to do some testing, ASAP. So sorry you and your family are going through this.
  18. I agree so much with you all! This topic frustrates me so much. I actually call it "pseudo-psychiatry". There is plenty of research and info out there to show that infection/inflammation and nutrient deficiencies can cause mental problems, and other chronic conditions that they throw labels at. I can find all this info EASILY, but for some reason the "professionals" have no clue. Makes me wonder if they are really interested in helping people, or if there is some kind of financial incentive from the pharmaceutical companies for them NOT to consider other options. My husband and I were just discussing this. I was talking about how much of the research I'm reading about mental illness points directly to infection, and asked why there isn't more research into creating new and better antibiotics. My husband commented that there is a lot more money for the companies if they can treat lifelong for symptoms - if they actually HEAL people there is not as much money for them! They do the same thing with other illnesses... treat the symptoms with a drug that causes deficiencies so you have MORE symptoms that they can treat with a drug that causes more side affects... (like statins.) "America's Favorite Pharmacist" Suzy Cohen has a book out on how many pharmaceutical drugs "mug" or rob you of essential vitamins and nutrients, causing a host of other problems. (She's not anti-med - she's a pharmacist, but wants people to be aware of the problems that can arise from them.) My hubby compared the pharmaceutical companies to the tobacco companies - the marketing strategy is to create lifelong customers. Sadly, they are the ones with the billions and billions for research, and they don't seem to be interested in healing anyone. A good book written by a doctor about this problem is "Overdosed America" by John Abramson, M.D. We have to somehow DEMAND change, but I'm not sure how to go about doing that!
  19. I have often wondered about this as well. (The abx aspect...) Abx, but also acetaminophen/Tylenol. Yeah, I get that the infection could be the culprit, but PANDAS and autism and all these problems that are becoming more prevalent seem to be a more recent occurrence. There have always been infections around, but the numbers of these problems have grown tremendously.(Throw in allergies and asthma!) I get the inflammation connection, but something is causing their bodies not to deal with the inflammation correctly. I'm not saying there haven't been these types of problems in the past, but it does seem like it has snowballed since the 80's. Abx kill the good gut bugs, so I certainly see the concern there. But I have to wonder also about how many of our kids got Tylenol/acetaminophen when they were young? (Mine did - for discomfort and fever from vaccines, and after having tubes put in the ears. There is quite a bit of info out there on the possible link between acetaminophen and autism, and many feel autism is another autoimmune problem. After reading about it, I will never take, or give my kids Tylenol again. (My husband is a pharmacist, and he agrees there is enough info to be concerned.) Who knows? Maybe it's the combo of abx and Tylenol when they were young - they are often taken together. Just more to ponder! http://www.greatplainslaboratory.com/home/eng/articles/Evidence-that-increased-Acetaminophen-use.pdf
  20. It's just under your profile information - top right. Right above the "View New Content". (It took me forever to figure out how to post!)
  21. Your son certainly does seem to be reacting very much like Sammy did. For these symptoms to come on after an illness really sounds like PANDAS/PANS. (These kids react to more than just strep.) You are in the right place. The parents on here have been more helpful than anything else I've come across. I'm sure more will chime in to encourage and guide you. The hardest part of this all is finding a doc willing to help. It's taken us YEARS - but we finally found a nurse practitioner at least willing to run some tests. Dr. K in Chicago got the ball rolling with abx (which quickly took away our dd's extreme depression), but the IVIG did not help her. He didn't test for much else, but did treat her for mycoP for a short time. She still has extreme anxiety, OCD/intrusive thoughts, and eating disorder and exercise compulsion. We are awaiting results from a neurotransmitter test, Lyme test, some kind of viral test, and I also requested a NutrEval test to see if she is deficient in certain vitamins, nutrients, etc. After years of this nightmare, we just need to know what's going on. It's been so hard finding a doc willing to look into this. It's so very frustrating when all they want to do is give them psych meds, which don't treat the root cause. Hugs to you all - there is hope. I hope you live close enough to some of the good PANDAS docs or an LLMD who can help you and save you years of searching! If I had to do it all over again, I would just make the appt. and hop on a plane...
  22. If I remember correctly, there is another Dr. K (same last spelling and all, I remember thinking how strange that was!),but the one you are referring to in Chicago is the doc we used, and he is definitely NOT alternative! I think they may have mistaken him for the other doc, who I think may have even been female. The doc you are referring to has the first name of Miroslav - so maybe if you give your ped the correct first name this will all be straightened out.
  23. Awesome! So glad more docs are hearing about this disorder, and willing to be more open minded. Thanks for sharing some good news!
  24. I'm so happy for you! It's wonderful to have others close by that understand the struggles and trials of this disorder.
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