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Found 114 results

  1. Hello all! This particular topic is worrying me and I would welcome any thoughts, ideas, experiences you may have. My ND feels strongly that DS10 should have his tonsils out (although that is probably a very slim possibility as we do not have an MD or an ENT on board). She believes his tonsils are harboring a lot of infection and this is preventing him from progressing in treatment. DS is positive for lyme, tested negative for co-infections, exhibits severe motor and vocal tics, slight OCD, no "typical" lyme symptoms like joint pain, brain fog, etc. A quick background - DS has never had strep throat. After tic onset in September 2013, he was positive on a throat swab for strep in October 2013, but no other symptoms. He was put on amoxicillin for 6 months. He had flares of symptoms over the winter, subsequent throat swabs were always negative. He did have the ASO and antiDNAse tested but I don't know the numbers. Because he didn't test positive for strep again, PANDAS was ruled out by the neurologist. Instead, he was diagnosed with a 'movement disorder' - i.e. tourettes or something. In May 2013 he tested positive for Lyme. Put on Augmentin for 6 weeks, no real changes in symptoms. Then clarithromycin was added, great improvement for a week, then back to previous levels. Did that combo for Sept/Oct/Nov 2014 (+ nystatin in Nov). Dec 2014 started azithromycin (in place of the clarithromycin), very slow improvement over 3 weeks. Tried tiny dose of grapefruit seed extract for yeast over the holidays - immense exacerbation and we stopped everything. He developed a horrendous screaming/swearing vocal tic and became hypersensitive to everything, panic attacks, aversions/phobias. He's better now, still some sensitivities (tics triggered by his sister's noises) and motor/vocal tics (screaming, a little bit of swearing) still there. Have been treating for yeast with nystatin and we are on a half dose of azith while we start the Cowden protocol for Lyme. Now if you've read this far, does it sound like we should consider tonsillectomy? His tonsils appear fine, but I know they can look okay but still not be. What could explain his lack of progress? Yeast? wrong abx? maybe abx don't work for him? (Don't get me wrong, I really like our ND, she's very experienced in treating Lyme and has studied with Dr. J. She's basing some of her recommendation on Dr Klinghardt's treatment of PANDAS. I'm just worried things may not go well with it for DS, but also worried that we're missing something by not doing it....) Thanks for reading
  2. http://www.infectioncontroltoday.com/news/2015/02/common-allergy-medication-may-be-effective-at-killing-the-bacteria-that-causes-lyme-disease.aspx A new study funded by the Bay Area Lyme Foundation and conducted by Stanford School of Medicine researchers shows that loratadine, which is a common antihistamine frequently taken to treat allergy symptoms, may be able to help kill Borrelia burgdorferi, the bacteria associated with Lyme disease. Lyme disease is a potentially debilitating condition with 300,000 new cases in the US each year. The study was published in the open access publication Drug Design, Development and Therapy. "Our results bring us closer to the possibility of discovering the first targeted therapy to treat Lyme disease," says Jayakumar Rajadas, PhD, director of the Biomaterials and Advanced Drug Delivery Lab (BioADD) at Stanford School of Medicine, and lead author of the study. "It's exciting to see first-hand that our insights into the metabolic activity of this elusive bacteria may give us the ability to actually kill it." The results of this new laboratory study show that loratadine (trade name Claritin®) and specifically its metabolite, desloratadine, are able to prevent manganese (Mn) from entering the cell wall of the bacteria that causes Lyme disease, starving the bacteria and causing it to die in test tubes. The antihistamine accomplishes this by inhibiting the bacteria's transport system, BmtA (Borrelia metal transporter A). Manganese is required for certain metabolic processes of Borrelia burgdorferi and also plays an important role in numerous biological processes in the human body. Previous research shows that in general, bacteria scavenge the body for trace metals that circulate in the blood and have developed special adaptations on their cell walls to internalize these metals. These adaptations are called transport proteins, and BmtA is the specialized transport protein for Borrelia burgdorferi. BmtA binds with manganese to bring it into the bacteria, and studies have shown that BmtA and manganese are required to make the bacteria harmful to the human body.(1) "Because current treatments do not work for everyone and the bacteria that causes Lyme disease offers many treatment challenges, this study offers encouraging insights for researchers, and hope for the 80 million Americans at risk of getting Lyme disease," says Bonnie Crater, founder and science committee chairperson of the Bay Area Lyme Foundation, the leading private funder of innovative Lyme disease research in the US. "We are grateful to the BioADD team for their commitment to finding solutions to this difficult disease." Currently, patients with Lyme disease are typically prescribed a two- to four-week week course of antibiotics, but approximately 10 percent to 20 percent of patients treated with this regimen will have lingering symptoms of fatigue, pain, or joint and muscle aches.(2) Increasing in threat due to rising prevalence across the US, Lyme disease is a potentially debilitating infection caused by bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. There are about 300,000 new cases of Lyme disease each year, 10 times more than previously reported, according to statistics released in 2013 by the CDC. As a result of the difficulty in diagnosing and treating Lyme disease, as many as one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates. Source: Bay Area Lyme Foundation References 1. Ouyang Z et al: A manganese transporter, BB0219 (BmtA), is required for virulence by the Lyme disease spirochete, Borrelia burgdorferi. Proc Natl Acad Sci U S A. 2009 Mar 3;106(9):3449-54.. http://www.ncbi.nlm.nih.gov/pubmed/192184602. Wormser GP, et al.: Duration of antibiotic therapy for early Lyme disease. A randomized, double-blind, placebo-controlled trial. Ann Intern Med 2003 May 6;138(9):697-704. and http://www.cdc.gov/lyme/postLDS/
  3. Hi, We just finished a bottle of Researched Nutritionals Arteminisin and have to order more but been reading up on Hopkinton Arteminisin. Would definitely like to try this. Does anyone have any info on it....helping? where to purchase? how much to take? thanks for any help frikfrak
  4. I read a post a while ago about Stephen Buhner's book and protocol, "Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma". I downloaded the book and it is extremely informative. I am trying to schedule a consult with his referral (Julie) for 2 weeks from now. I am curious if others have tried this approach to kill mycoplasma and if it was successful. If so, how long did it take and do you have any suggestions. Thank you. Heidi
  5. A good introduction for those new to tick borne disease: Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms https://www.youtube.com/watch?v=7kG7BHlByeQ&app=desktop About half way through the video he discusses patients with intrusive thoughts.
  6. Hello friends, This is going to be an unusual thread. I am new to this whole disorder. My child is 7 and I will get my child's lab results on Monday. We are testing for PANDAS and other potential viruses. My question is this... has anyone ever used the Hippocrates Institute in Florida to treat this illness? I have been into the natural medicine/ alternative therapies world for my own autoimmune illness since 2009 and I am very familiar with this retreat/resort, etc. (There are hundreds of youtube videos if you want to research it). I never would have spent the money for me, but since it's my child, it's a whole different ball game. Their testimonials are fantastic!!!! I am entertaining this treatment along with many other options. My concern is his... this would be hard on a 7 year old ... boring and long (3 weeks in a hotel environment, wheatgrass, living foods, educational classes, etc). If I decide to do it, I would have my child bring a DVD player with headset to entertain him while he sits next to me throughout the classes. If any other mom's are considering this treatment, it would be nice to have a child for my son to play with. I have spoken to Brian Clement (the founder) and they will treat children. Anyway.... this is all in the air. I have not even spoken to my husband about it. But just wanted to see if any other families have tried this approach. If we try this, it will be soon. Maybe in the next month or two. I am looking forward to hearing back from you.
  7. We are testing for Strep today. My son is starting to hate needles. Is there anything else I should test him for (like Lyme) at the same time to eliminate the need to come back and draw blood again. He throws a temper tantrum which is not good for all his tics and stress levels. I am new to this. I am reading "Childhood Interrupted". It has been eye-opening. I just realized what the possible situation was last night and I am overwhelmed to say the least. Any referrals or advice is appreciated. Thanks. Heidi
  8. DS is currently taking 500mg a day of NAC for liver support and detox help, as it is a precursor to glutathione. I'm wondering if we should try glutathione (liposomal? suppositories?) instead as he needs detox help. Anyone using either and finding it makes a difference? positive or negative What brand of glutathione is best? thanks!
  9. Hi, Can anyone help with how to take Zeolite. I purchased the powder form and it states "Does not mix well in water" They suggest putting it in yogurt but we are dairy free. Can I mix in applesauce? or something else. My DS is great with taking anything. I'm sure if I did put in water he would just down it, how much water, full glass? Also do you detox everyday or maybe just on weekends? I'm assuming you need a 4 hour window just like activated charcoal so at best I can only do this once a day.....good enough? For how long, weeks, months? thanks for any help frifrak
  10. I'm not sure how to deal with this situation. For the past few months, DS has had a flare up every month or so. Whether it's related to the Lyme life cycle or parasites, I don't know, maybe it's both? He flares around the full moon, and so people have brought up the possibility of parasites. His tics get more frequent and more 'severe' - i.e. the sequence lasts longer and produces a much larger, full body movement. It lasts about a week. Then he goes back down to regular ticcing (it hasn't yet gone away). He is currently taking augmentin and clarithromycin, and some herbals Biocidin and MC Bab 1, which are partly anti-parasitic but he's only on one drop a day. We do lots of detox. And probiotics, sacc B. I've upped his detox this week but it doesn't seem to have any effect. So if it's parasites growing/reproducing, detox wouldn't help? Should I increase the herbals to two drops? I also don't exactly understand how parasites would cause a flare? Can someone explain to me? I realize with a dysfunctional immune system, the parasites have more of a effect than on a healthy immune system.
  11. Hi, I know that alot of people use magnesium for their children to help them sleep. My DS (24) sleep has gotten worse, to the point that only seroquel works. I would prefer not to give this and want to try magnesium. My question: His magnesium levels are fine so is it still ok to give magnesium. Also he has constant diarrhea which we are trying to fix so I read to give Magnesium Glynicate because it doesn't create diarrhea, yes? There is also a newer form out now...Magnesium Threonate, supposedly gets into the brain better, has anyone used this? Also what dosage....500 mg. before bed? thanks for any help frifrak
  12. I'm not sure how things are going with us.... it's hard to tell if we're making progress or not. Could someone please look over what we're doing and based on your experiences, if it's a good plan? should I just be more patient? Thank you so much! I'll start with when DS was dx'ed with Lyme in May. He was not on any abx, tics were very bad - screaming tic, large movements (punching, kicking), biting himself and things. Did some herbals (Biocidin) but caused a big herx. In mid-July, we started Augmentin (1250mg/day) and things settled down slightly and plateaued - no more screaming but still some biting, and still large movements. In mid-August we added 500mg Biaxin/day. After 10 days, the tics decreased and the first week of September, the tics were 85-90% gone - so good! We were hopeful but the first weekend (Sept 6-7), he woke up one morning and all the tics were back. DD had a cold/cough and soon DS came down with it too. After a week of flaring, things settled down slightly again but he was back to like he was before he started the Biaxin. So mid-Sept, the Biaxin was increased to 1000mg/day because he had a positive reaction to it. However we seemed to have plateaued again, with some flaring this week (full moon?). My understanding is that with treatment, flares start to become less severe. I also hear from some that after adding this or that, all the tics were pretty much gone. I don't know if we're heading in the right direction? We do lots of detox, enzymes for biofilm, arabinogalactan and probiotics for gut, boswellia complex for inflammation. We're waiting on the results from Igenex for the co-infections panel. What am I missing? This is so frustrating! Thanks for any input.
  13. Hi, Has anyone used Metabolic Maintenance REM Maintenance for sleep? Was just recommended this by our doc. Does it work? Hate to spend more money if it doesn't work. My DS (24) will only sleep if given seroquel. thanks frikfrak
  14. I want to do the Igenex co-infections panel on DS, who tested positive for Lyme a few months ago, but he is on two abx currently (plus some natural antimicrobials and a host of supplements). I don't want to risk taking him off abx because he is doing well on them right now, but if he is taking them, will that mess up the results of the testing? He is on Augmentin and Biaxin which I do not believe are used to treat babesia or bart. What about the other co-infections? I can't find any info on the Igenex website about how abx affect the test results. Help please?
  15. We've only knowingly been treating for Lyme since mid-July, and added a 2nd abx (biaxin) and a biofilm dissolver in mid-Aug so I know we have a long ways to go. Ten days after adding that 2nd abx, tics started to decrease. So after an amazing first week of school where tics were quite low, DS picks up a cold and now he's worse again. Pretty much back to the beginning when he was only on one abx. Cold is gone, but tics are up. So I'm just wondering if the flares will lessen over time, as he remains on treatment. Or because the tics are autoimmune caused, and the treatment is addressing the Lyme/co, I need to do something else.
  16. Hi, Can someone explain the difference between GABA and Ashwaganda to me. Is it basically the same? Doc has us starting GABA 500mg. 2x daily...possible getting up to 1000mg in AM and 2000 in PM if needed. I also suggested the Ashwaganda for sleep so she said to take 500 mg. 2x day. Said it has alot of other good properties which I did read about. I'm confused though, if i want it mainly for sleep shouldn't I just give at night? Although I've read where some people find it energizes them and some said it makes them sleepy. I did give 1 pill last night and I don't think it did anything yet I do think the GABA help calm him during the day. Also can I give both at the same time? Did get his Cunningham test back, the results: Dopamine D1: 8,000 Diopamine D2: results not back yet Lysoganglioside: 640 Tublin: 4000 CaM Kinase II: 98 So high in everything except the CaM Kinase.....does this mean he's Pandas? thanks for any info frikfrak
  17. Anyone had this Biofilm test done on blood for Lyme??? Any feedback one way or the other???
  18. I'm learning about this after reading about a success story on one of my many Facebook PANDAS groups, and went searching for information. There are others that have been helped by it, although I'm still trying to understand it. My ND's office has a chiropractor who uses it for Lyme patients, but he is not that familiar with PANS. I know it reduces inflammation and increases blood flow and helps facilitate healing, but does it kill bacteria? I don't know whether or not to try it. Has anyone had any experience with this?
  19. This was posted on another forum and I thought it relevant to our story, and perhaps to those of others here. DD's major downturns have both coincided with MMR vaccinations. http://sanevax.org/gardasil-decision-will-always-regret/ Thanks "surprise"!
  20. Just got off the phone with one of my NDs and talking about immune modulation and how we can redirect the immune system into fighting bacteria and viruses instead of DS' brain. She said she uses larch arabinogalactan with a lot of kids - I've been doing a lot of reading and this is the first I've heard of it. Anyone else use it? She also recommended olive leaf extract. What is a good brand to use? And dosage?
  21. I've noticed this happening over the winter and it's happening now too. DS seems to flare after he is sick, but not during. For example, this past Monday he seemed to have some slight improvements which continued on through the week, but on Wednesday he developed a stuffy nose/cough in the evening. The worst of it was Thursday and Friday, but his tics were still improving. However, by Saturday he had gotten over the worst of it (and passed it to me and DH), but his tics really flared up that night. And Sunday, and until now. I find it curious and wonder what is happening with his immune system - when he is sick, is his immune system "busy" with the virus? then he gets better, and his immune system can go back to attacking himself? Also, he kicked a hole in the drywall while ticcing this morning - anyone know how to fix it?
  22. So I noticed that DS' breath last night had a weird fermented smell. Kind of like he had a couple beers. I smelled him this morning and it is not so bad. Smelled his skin too but he smells normal ("mommy!! what are you doing?!?!") . I started thinking about yeast overgrowth; he's been on abx for 3 weeks and does take 50 billion units of probiotics. He's also on Sacc. B., which is a yeast, so I'm wondering if I should cut back on the Sacc.B for a bit. He takes his last abx around dinner, and his probiotics right before bed (as per the ND's advice). He hasn't had any tummy issues. Has this happened to anyone else? What should I do?
  23. I have went back and looked at many post on Lyme disease. So maybe I missed something and you guys can help me out. I went back and looked at all of my son's test results since he was sick in December 2010. He has been checked several times for Lyme and coinfections at different labs. After his main illness began, he was tested at 2 months, 6 months, and 9 months later for lyme and coinfections. All testing was negative and was done by different labs. I know that Lyme testing is not the most accurate from any lab even from Ignex. Is there a Lab that runs an accurate test to check for late stage lyme? I'm talking 4-5 years late. Or is this an impossible test to find?
  24. DD is showing improvements (overcoming some OCD behaviors and doing some online school work), but liver enzymes are elevated. Could it be (wishing) that the antibiotics and antifungals have done their job and she just needs time to learn to be "normal"? I want to give her a break from the meds, but don't want to interfere with necessary treatment. I also don't want to do harm by continuing meds that might be damaging her liver... Have gotten no reply yet from the provider...
  25. Ugh. Need to vent. DS' new tic these past three days is screaming at the top of his lungs. Makes driving with him a rather harrowing experience. I'm hoping this doesn't last long. I thought the loud whistling was bad but I'll take whistling any day over this.
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