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Everything posted by coco

  1. When we first did ivig with dr k in Chicago three years ago he urged us to wait to do another so quickly. He and other wise moms before me coached me and said it can take A YEAR for the brain to heal. Not what I wanted to hear. In the absence of a stair step recovery and flares of unbearable behavior I pushed for more ivig. In hindsight I cannot say that was the answer. It was only until we did our last one 15 months ago that I see holding improvements. For us, TIME was our friend. And back then I was convinced it was my enemy and it was a very tough road indeed. There's nothing worse than when your child is spiraling and you are grasping for more help. Sometimes more is not better, and continuing to support their immune systems, gut healing, detoxing, etc can further contribute to their healing. I know each situation is different, but when you're inthe eye of the storm it is never clear what to do next. Best wishes.
  2. White plains/westchester ny is the closest and easiest by far, but not every carrier offers service. Worth a check.
  3. As I was getting dressed this morning I heard a snippet on the news about vaccines...something like, "new information reveals that childhood vaccines are not doing what they intended...". Didn't catch the piece. If anyone else did, I am anxious to hear (probably what we have already hypothesized!) but maybe it's the start of something.
  4. LLM and MomOCD, Soooooo well written and mirrors my sentiments exactly. I have yet to speak to ANY doctor with regards to Pandas, Lyme, co-infections, vaccinations, supplementation, viruses, etc., who have got it all figured out for each and every patient. And these are good people. The nuances and complexities of these children's journey of healing is individual, and it does take a tremendous amount of research, thesis-style, to try to spin the straw into gold. And although we are patient enough to be safe, we are fully aware of the ticking clock of childhood and of some aperture closing...so we are bold, because we feel we have no other choice.
  5. Crying for you!! Tears of happiness! LOVE IT!!👯👯👯👯👯 happy dance!
  6. Dr Adam Pearl in Trumbull. He is excellent. Does not know pandas, but open, eager, smart and great bedside manner..
  7. Laura, I appreciate this research, as we are in the same wet boat. I keep thinking that once she is clear of underlying infection this will clear up as well, but the lazy comfort factor surely must be a player in this. So many things have improved for our dd, I am encouraged this will as well. But I think I gotta nudge this along more. When she was first put on biaxin for mycop she was dry 9 out of ten nights for a stretch, but that was short-lived. We are still pursing lexafloxicin once Dr T gives the high sign. Right now I am in wait and push mode with him. Thanks again for sharing this.
  8. Thanks for posting this. I thought I was past this one. Eesh. Had dd tested and dr b said, "she's fine.". But this post forced me to relook and she is heterozygous A1298C only. I found the below link on an MTHFR website for any of those who have kids like mine. I have been giving her methyl folate, titrating very slowly over 3 weeks. We are at about 400mcg as of Saturday. Coincidentially, she has had 2 dry nights in the last two days, and she has also struggled with this her since early childhood. I think she seems less anxious, but it could be all the other stuff we are doing as well. Would those who know more think I should continue supplementing w Methy folate? She also takes sublingual b12. ---------------------------- There is little known about the A1298C MTHFR mutation. Or so it seems. Research seems to ignore it almost completely while the C677T MTHFR mutation gets all the attention and glory. For those who have the A1298C MTHFR mutation, this is frustrating. Symptoms exist and doctors are saying there is no correlation between the MTHFR A1298C mutation and your symptoms – right? I’d like to prove them wrong – at least for the symptoms which do correlate with the A1298C MTHFR mutation. Lets’ get started. The MTHFR A1298C mutation can be serious – especially if you are either: Homozygous A1298C MTHFR mutation Compound heterozgous A1298C + C677T MTHFR mutation My current stance on the heterozygous MTHFR A1298C mutation is that it is very common and does not seem to pose too much concern unless there are other methylation or cytochrome mutations present. Obviously, if one leads a lifestyle which is unhealthy (smoking, high stress, toxic exposures) and consumes an unhealthy diet (refined carbs, processed meats, saturated fats), then having a heterozygous A1298C mutation may contribute to symptoms of cardiovascular disease, depression, fibromyalgia and others. Ever hear this?: Your homocysteine levels are fine. You’ve nothing to worry about. I know many doctors evaluate homocysteine only when it comes to MTHFR mutations. This is absolutely incorrect. Those with A1298C MTHFR mutations do not display elevated homocysteine unless they are combined with C677T. Even when combined with C677T MTHFR mutations, the A1298C types still do not tend to have very elevated homocysteine. Why is this? The MTHFR enzyme appears to contribute function in both two major pathways: BH4 and Methylation. The area which the A1298C MTHFR mutation works appears to disrupt function in the BH4 cycle. The BH4 cycle is absolutely critical for these various functions: assists the breakdown of phenylalanine helps form these neurotransmitters: Serotonin Melatonin Dopamine Norepinephrine (noradrenaline) Epinephrine (adrenaline) cofactor to produce Nitric Oxide (NO) assists breakdown of ammonia If your BH4 cycle is not working properly due to an A1298C MTHFR mutation, you are definitely going to be expressing some symptoms either mentally, emotionally or physically – or – all together. Once you understand the biochemical effects the A1298C MTHFR mutation causes, it becomes easy to identify possible problems. I am going to list possible symptoms, signs and conditions associated with A1298C MTHFR mutations. Keep in mind this is not a comprehensive list. I will add to it as I think of more (or you inform me of ones that I have omitted). Possible symptoms associated with A1298C MTHFR mutations: hypertension delayed speech muscle pain insomnia irritable bowel syndrome fibromyalgia chronic fatigue syndrome hand tremor memory loss headaches brain fog Possible signs associated with A1298C MTHFR Mutations: elevated ammonia levels decreased dopamine decrease serotonin decreased epinephrine and norepinephrine decreased nitric oxide elevated blood pressure muscle tenderness ulcers pre-eclampsia Possible conditions associated with A1298C MTHFR mutations: fibromyalgia chronic fatigue syndrome autism depression insomnia ADD/ADHD irritable bowel syndrome inflammatory bowel syndrome erectile dysfunction migraine Raynaud’s cancer Alzheimer’s Parkinson’s recurrent miscarriages There are certain dietary, lifestyle and supplemental recommendations that help reduce the effects of the A1298C MTHFR mutation. That is well beyond the scope of this article. There are a few nuances making it difficult to simply give flat recommendations for all who live with the A1298C MTHFR mutation. Remember, if you are homozygous A1298C or compound heterozygous MTHFR, the likelihood of your family members also having MTHFR mutations is very high. Get them tested! For now, I hope this is useful for you and has shed some light into your situation. Please do post questions, thoughts and comments below – and share this with your friends and family. Please Help Spread the Word!
  9. I asked both dr b and dr t about amentadine, dr b did not offer too much, but dr t said it was used quite often in brain injury, and thought positively about it. Our conversation moved onto other things and I forgot to close the loop on that one. Next time I talk to him I will revisit.
  10. Pyroluriatesting.com. By direct access health. It's a green backgrounded website. Go to the menu on the left, find pyroluria test, then kryptarole test. It is $80 and they will send you a urine collection test kit. Complete it and mail it back (I believe it can be mailed mon-wed for specimen purposes) all easy instructions are included. Within a week you will get labs emailed to you along with ranges, results, and there is a clinician available to speak to if you have questiions. You do not need any doctor's signature for this
  11. Dr T ran: Complete CBC Vit D Ferritin Total IGG/IGA Thyroid free t3 and t4 Streptoenzyme ASO DNAS Mycoplasma IGG/IGM Amino acids ANA Histamine Parvo EBV HSV 1 Lyme panel Lyme coinfections I have a kit for some genetic testing that we are considering. Also going to to NMDA receptor encephalitis which is a separate blood draw and mailing to Spain through univ of PA. Might as well rule it out. I think that's it. I just took her this morning and am going from memory. We did do pyroluria and MTHFR and that was negative.
  12. We had our appt today with neuro and I presented the abstract and discussed the various options for treating mycop. After presenting daughters IGG/IGM history, he concurred that we were dealing with chronic mycop. Asymptomatic other than neurological/pandas. This can be due to a dysregulated immune system and/or the mycop in an of itself. 10% of all mycop affects the brain. I told him we have been on augmentin, zithro, biaxin, minocin without lasting conditions. He then suggested cipro. I wasnt against cipro, but how about we try exactly what Was done in the study? I am so done with "maybe try this and see first" and think I'd like to follow the EXACT recipe. Doctor was enthusiastic 😊 about this research paper and he went to purchase and download the entire report then and there. I believe he knew one of the doctors and was impressed with the reputation of the group doing this research. As far as I can tell, there is no other research on this. In brief, 5 children with mycop were treated in ER with macrolides. All failed to respond within several days. The prevailing thought seemed to be if you don't see marked improvement in the first several days, you are not going to see more improvement in subsequent days. EEGs showed slow frontal lobe activity among other symptoms. Macrolides were stopped and IV levofloxacin was administered at 25g per kilo for 2 weeks. All symptoms abated and normal EEGs returned. There is no research to determine if levofloxacin can irradicate long term chronic mycop, but there is no reason to believe it can't. Whether or not normal neuro functioning can occur is the million dollar question, especially for those kids who have missed developmental milestones and permanent neurological damage results. I am personally a big believer in neuroplasticity, but that's another thread...hope has brought me this far! In summary, levofloxacin has a good safety record. There was a concern that it caused muscle/tendon lesions and was not recommended for growing children, but that was 15 years ago and is thought to be quite safe today. I would recommend you read the research. We are running additional labs and the doctor will review the research in detail, but as of today he is on board with giving it a shot. I am sorry the link I posted does not work. I purchased the article from my iPhone (don't even open the laptop anymore) and only had 24-hour access. It wouldn't allow me to do some functions from the iPhone and I ran out of time to play with it anymore. However, I have the hard copy full article today and my husband has scanned it into his computer, so I will be able to email it to anyone who would like it. Just pm me. I hope this becomes an answer for so many of us.
  13. So wonderful! I can see your proud smile!! Enjoy this honor with your family!!🌟
  14. Melanie, scroll down a bit to the original chronic mycoplasmas IGG Post, there you will find my complete post and link to full research article you can read, print and take to your doctor. Hope it helps. Pm me if you can't print it out for some reason.
  15. There's another place that i used for my dds pyroluria test and you don't need a doctors order. They mail you a test collection kit, you complete and mail back and they mail you results online. It was either 60 or 80 dollars. Let me know if you would like that info and I'll dig it up.
  16. Hi bees knees -- scroll down a bit as there's a fresh thread on chronically evelated IGG titers.
  17. Yes, there is a definite connection. Abx can change the mucous makeup which causes a brownish/yellowish staining, or crud, as you put it. My dd had this and we ended up taking her for quarterly professional cleanings rather than 6-month cleanings. To reassure you, it is not decay, just an unsightly buildup.
  18. Here is the full article I purchased for all who are interested. I have not digested it yet but welcome your thoughts! http://ac.els-cdn.com/S0924857911000574/1-s2.0-S0924857911000574-main.pdf?_tid=29a250da8c622ea6a6dae1d67362da3a&acdnat=1336066634_a002a18c585415f9f539398e6f64d102
  19. This is an abbreviated abstract of the keynote address at the may autism one conference in Chicago. Talks about abx treatment for autism, which I had never heard about before. Sounds an awful lot like the origin of Pandas/Pitands to me. THE MICROBIAL TRACK Dr luc Montagnier There is in the blood of most autistic children-but not in healthy children-DNA sequences that emit, in certain conditions, electromagnetic waves. A therapy first started by a group of independent clinicians and now performed in conjunction with laboratory observations reinforces the idea that systemic bacterial infections play a role in the genesis of symptoms of autism. Our GPs have observed that a long-term therapy consisting of successive antibiotic treatments with accompanying medications induced in 60% of cases a significant improvement-sometimes even a complete resolution of symptoms. Our working hypothesis is that immune dysfunction associated with inflammation of the intestinal mucosa leads to the introduction of bacterial components, including neurotoxins,
into the bloodstream, creating oxidative stress as well as microvascularities, especially affecting meningeal vessels and finally specific neuronal damage.

  20. Levofloxacin for the treatment of Mycoplasma pneumoniae-associated meningoencephalitis in childhood Susanna Esposito, Claudia Tagliabue, Samantha Bosis, Nicola Principi Department of Maternal and Pediatric Sciences, Università degli Studi di Milano, Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico, Via Commenda 9, 20122 Milan, Italy Received 13 December 2010; accepted 12 January 2011. published online 07 March 2011. Abstract Full Text PDF References Abstract It has long been postulated that Mycoplasma pneumoniae plays a causative role in the development of neurological syndromes and this has recently been confirmed by highly sensitive and specific molecular diagnostic techniques for identifying infection due to this pathogen. Encephalitis and meningoencephalitis are the most frequent M. pneumoniae-associated neurological manifestations. Macrolides are considered the antibiotics of choice for treatment of paediatric M. pneumoniae infection, but the increase in macrolide minimal inhibitory concentrations of a substantial percentage of M. pneumoniae strains and the poor penetration of macrolides into cerebrospinal fluid suggest that drugs other than macrolides should be evaluated. Here we describe five paediatric cases of M. pneumoniae-associated meningoencephalitis in which 14 days of intravenous (i.v.) administration of levofloxacin (25mg/kg/day in two divided doses) led to the disappearance of neurological signs and symptoms, with a good safety profile. Although further studies are needed to demonstrate whether or not M. pneumoniae-associated meningoencephalitis should always be treated with antimicrobials, what the drug of choice is, how long therapy should be administered and whether supportive therapy is useful, these findings suggest that i.v. levofloxacin should be considered for the treatment of paediatric M. pneumoniae-associated meningoencephalitis. I have copied this abstract for us in my ongoing quest to figure out chronic high mycop IGG numbers for my dd over the course of more than 2 years. Biaxin and minocycline did not show sustainable gains after multiple high-dose courses over said time. I presented this research to our dr this morning along with a one-pager of bullet-point mycop IGG data month to month to show this titer rising--slightly falling--rising cycle. Asymptomatic other than neurological. He was willing to go with cipro, but my gut tells me levofloxacin may hold the answer. No "years" of pulsed macrolides, gut death, etc. I am going to purchase the complete study which follows the treatment of 5 children and will keep you posted. Sometimes these docs are resistant to try if unfamiliar with treatment protocol, but I will go so far as to contact the authors of this research and set up a call if possible.
  21. I started taking zinc a week ago when I started my son on it. I normally take a raw b complex but ran out a week or two ago and need to order more. Thanks for that reminder. I'm typically not a very anxious person, in times when my son is refusing to go to the doctor before we need to leave, or he's screaming outside my door...yeah...lol, but otherwise, I'm pretty laid back. The researching actually calms me, I have to know the ins and outs of things and the "Why?" behind everything. I 've always been very interested in science and despite being plagued by it all, I find every bit of this stuff fascinating. I have an appt with LLMD on May 11th. Had some more labs done this morning for that. That's the best I can do right now, but damn, I'm worn out. Just plain worn out. Tomorrow is a week of peace in the house though. Not sure if it's the zinc, niacin, vitamin D or zithromax...but I've got my kid back this week. Woo hoo! I am so sorry you are feeling like crap! We are all there with you, sista! One the that really helped me to my amazement was/is acupuncture. Battling Lyme is h--l, and fighting for your child's health on top of regular life is a challenge under the best of circumstances. I find acupuncture to be very restorative and the solace and quiet time just for me a necessity to recharge. Try some adrenal support products and I bet your amino acids are low. Those sups helped me out of the hole.😉 good luck at your appt.
  22. I am so happy with your results!! May I ask about ibf? Did you do liver testing as you went? I always thought you could only do 5-14 days of it periodically. My daughter, too, gets great benefit from it but I am afraid to use it longer. Again, so glad for you!
  23. How Much Methylfolate Should I Take? Find Out by Dr Ben on March 22, 2012 in MTHFR Mutations When one is diagnosed with a MTHFR mutation, the first thing typically prescribed is methylfolate – or, incorrectly, folic acid in high amounts. There is no standard of care prescribing methylfolate for MTHFR mutations. Thus, the variation in prescriptions is vast – anywhere from nothing done upwards to Deplin 15 mg or Folic Acid 4 mg. There are a few issues here: Doctors are guessing how much methylfolate to give you Doctors are giving high doses of methylfolate Doctors should not prescribe high dose folic acid Diet is commonly not evaluated Supplements are commonly not evaluated Even with all these issues, doctors – and you – can know how much methylfolate you should take. There is a lab test which evaluates blood levels of: unmetabolized folic acid methylfolate If doctors order this lab test, methylfolate dosing will be more accurate. There are a couple potential issues with the lab test. Is methylfolate stable or does it readily break down thus making the lab results inaccurate? Where did the lab get the normal ranges for methylfolate? Since the general population has a 50% to 60% chance of having one MTHFR mutation, the potential for methylfolate ‘normal’ ranges being off exists. These are two questions that need to be asked – and will be followed up here. In the meantime, for those wanting to evaluate their unmetabolized folic acid levels and methylfolate levels, I do recommend ordering the Unmetabolized Folic Acid Test by Metametrix. Who should order this test? Those with MTHFR defects Those who have any signs of MTHFR mutations Where do I send my doctor to order this test for me? You send them to Metametrix. What if my doctor won’t order this test for me? You may order this test directly from Seeking Health. Please note that insurance is not accepted. Stop guessing and identify if your methylfolate levels are where they should be. Be sure to tell your doctor about this test! Don’t Want to Pay for a Lab Test? Rather experiment to see how much Methylfolate you need? If you have been diagnosed with a MTHFR defect, and you want to try taking some methylfolate, what I recommend trying to do is this: Take small amounts of methylfolate along with methylcobalalmin and work up. Consider taking 1/2 tablet of Active B12 with Methylfolate. This amount is typically well-tolerated by many. Increase to a full tablet after 1 week. Continue to increase the amount taken by 1/2 tablet every 7 days until you feel really good. If you feel side effects from taking Active B12 with Methylfolate, take 1/10th tablet of Niacin. Work with your doctor on this and inform them what you are doing.
  24. We do epsom salt baths nightly, activated charcoal every several days, Metamucil to suck up and flush out those toxins. Juice of one lemon, altho I have read that dr Garth Nicholson uses 2 entire lemons, blended, a cup of water and I believe half cup of olive oil. Blend all together, strain, drink remainder. Have not tried that one yet! Additionally I feel it's important to rebuild along with detoxing, it has helped us. We use goat kefir daily, which is an excellent source of magnesium, vit k, probiotics and tryptophan. We use a product from apex energetics that our naturopath recommends called glutathione recycler. It is not enough to merely add glutathione, even liposomal is hard to absorb, and this keeps the existing and supplemented glutathione at a constant level. We also take a product called nitric balance, which is an amino acid supplement containing ATP, NAC and alpha-GPC. Also using selenium, vit d3, b's, inisotol, vit c, garlic (she loves roasted!😜) flaxseed and coconut oil. This has made a big difference for my daughter.
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