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Everything posted by rowingmom

  1. http://vaccinepapers.org/al-adjuvant-causes-brain-inflammation-behavioral-disorders/ "...the study found that the lowest dose (200 mcg/Kg) was the most toxic! For many outcomes, the 400 and 800 mcg/Kg dosages had no observable adverse effects, but the 200 mcg/Kg dose did. Crepeaux (paper): Non-linear dose-response of aluminium hydroxide adjuvant particles: Selective low dose neurotoxicity The low toxicity of the higher dosages appears to be a consequence of dosage-dependent inflammation at the injection site. The high dosages caused intense inflammation at the injection site, forming “granulomas”. The 200 mcg/Kg dosage did not produce granulomas. Granulomas are hard nodules in tissue produced in response to injury, infection or foreign substances. Its a way the body “walls off” injured tissue and prevents the spread of infection or toxins. The granuloma appears to provide protection from Al adjuvant toxicity. The granulomas prevented the Al adjuvant particles from leaving the injection site. This explains why the 200 mcg/Kg dosage affected the brain and behavior, while the higher dosages did not. This suggests that it is more dangerous and harmful to administer numerous small injections of Al adjuvant, compared to a large single injection capable of inducing a granuloma." "According to the US vaccination schedule recommended by the CDC, infants are urged to receive the following (maximum) dosages of Al adjuvant: Birth: 74 mcg/kg (250 mcg for 3.4 kg infant) (Hep B only) 2 month: 245 mcg/kg (1225 mcg for 5 kg infant) (Hep B, DTaP, HiB, pneumococcal, polio) 4 month: 150 mcg/kg (975 mcg for 6.5 kg infant) (DTaP, HiB, and pneumococcal) 6 month: 153 mcg/kg (1225 mcg for 8 kg infant) (Hep B, DTaP, HiB, pneumococcal, polio) Since each Al-containing vaccine is not given in exactly the same location (and are often given on different limbs), each vaccine may provide a “low” dose that does not form a granuloma and hence deposits transportable Al adjuvant. Human infants are likely receiving Al adjuvant in numerous small doses that can be transported to the brain."
  2. I am suggesting you follow up on bartonella specifically.
  3. Yes, remission is possible. DD15 has now been asymptomatic for 2 years, but we had to treat the proper infections to get there. Partial treatment was ineffective.
  4. I would also suggest that you follow up on your lyme diagnosis. Because of lyme's tendance to suppress immune function, coinfections (bartonella, babesia etc.) are very, very frequently involved. Bartonella especially will produce neuropsychiatric symptoms: Psychoimmunology of Tick borne Diseases and its Association with Neuropsychiatric Symptoms https://www.youtube.com/watch?v=7kG7BHlByeQ
  5. Very interesting reading from AoA Contributing Editor Teresa Conrick: http://www.ageofautism.com/2016/12/cdc-denying-harmful-human-vaccine-consequences.html "A particularly notable finding in our study is the 900% increase in noninvasive pediatric vaccine-related isolates that was associated with serotypes 19A...serotype 19A frequently recovered from middle ear fluid specimens. ● It is noteworthy that serotype 19A—the original multidrug-resistant serotype reported from South Africa in 1978 [41]—emerged in the United States after the introduction of PCV7 in 2000, and many of these isolates are multidrug resistant." "Vaccination with PCV-7 resulted in a shift in bacterial community composition and structure, with an increase in presence or abundance of several anaerobes, such as Veillonella, Prevotella, Fusobacterium, and Leptotrichia species; gram-positive bacteria, such as Actinomyces and Rothia species, and nonpneumococcal streptococci; and gram-negative Neisseria species…. Together with S. pneumoniae nonvaccine serotype replacement, these effects may further jeopardize the net health benefit of vaccinations with PCV.” http://www.ageofautism.com/2014/06/the-human-microbiome-evolution-of-vaccine-exposure.html Vaccination is likely to have important consequences for the NP microbiome. Current pneumococcal vaccines are directed against multiple serotypes thus potentially eliminating these from the microbiome. Based on observations on this and other vaccines, new organisms are expected to move into the empty niches created by vaccine elimination of organisms. Thus the structure of the microbiome is altered by vaccines. The unintended consequences of this alteration remain to be seen. It seems very possible that if the microbiome takes a hit, like mercury exposure or immune manipulation via vaccination, the more we may see the immune system diseases rapidly rise. Autism and PANDAS/PANS and other immune-damaged diseases deserve huge concern and true research." http://www.ageofautism.com/2014/04/autism-does-mercury-modulate-the-microbiome.html#more "... here are studies showing how it is the microbiome, not genes, that will lead the way in helping so many stricken with these symptoms: • That veil is only very recently being lifted with respect to a potential role for autoimmunity in neuropsychiatric disorders. This shift has occurred as evidence accumulates to support the idea that dysregulated cross-talk between the brain and the immune system is an important contributor to the pathogenesis of conditions as diverse as schizophrenia, mood disorders, autism spectrum disorders (ASDs), obsessive-compulsive disorder (OCD), Tourette syndrome and other tic disorders, attention-deficit hyperactivity disorder (ADHD), anorexia nervosa, narcolepsy, posttraumatic stress disorder and myalgic encephalomyelitis/chronic fatigue syndrome (CFS).[4,5] In addition, intriguing new evidence lends support to the possibility that not only the microbes associated with infectious episodes but also the bacteria of the gut microbiome can foster the production of brain-reactive autoantibodies, and that these microbe-induced antibodies provide the critical link between infection and neuropsychiatric disorders. • ….Eventually, as more pathogens are incorporated into the microbiome and levels of dysbiosis increase, people begin to present with symptoms characteristic of an autoimmune or inflammatory diagnosis......There is increasing evidence that autoimmune diseases run in families due to the sharing of common microbes.... The microbiome a child develops is a direct reflection of those harbored by the mother and close relatives. Microbes are introduced by a multitude of sources including the placenta, sperm,egg, breast milk, and vaginal canal.[37] …. Autoimmune diseases are more likely passed in families due to inheritance of the familial microbiome than inheritance of Mendelian genetic abnormalities.” "Note that the above study refers to "regressive-type" autism as a disease. I have watched my own daughter suffer for years -- infections, pain, neuropsychiatric symptoms related to PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and an autoimmune diagnosis shown by antinuclear antibodies. Since 1938, those with the symptoms called “autism” have been put on a spectrum, from low functioning to high functioning. It is very possible that their functioning had everything to do with a dysfunctional microbiome." Here is a good video by Stephanie Seneff on the association between glyphosate, vaccine constituents, gut bacteria and autism: https://www.youtube.com/watch?v=o3P6wVUH0pc
  6. Stephen Buhner recommends both Japanese knotweed and kudzu for brain inflammation. I have found that both work very well.
  7. LLM is very experienced and will give you important information. Please take the time to search her archives to see what she has accomplished with her children. MTHFR deletions were an important factor in DD15's illness. Inability to detoxify will result in metal and toxin (from infections, but also from pesticides in food/water and vaccinations) overload which compromises immune function. In our case, bartonella was responsible for DD's PANS reactions. And very much like you, her symptoms increased with antibiotic treatment that addressed that infection. If you have been diagnosed with lyme, coinfections are almost certain. Our LLMD told me on our first visit that bartonella was responsible for DD's PANS reactions and that once we had treated that infection properly they would resolve; they did. With herx symptoms including raging and OCD, please consider bartonella as a probable cause. Here is DD's complete timeline: Born Sept 2001 – born with light / sound / touch sensitivity. Nursed and slept well, appeared healthy, accomplished first year milestones but with low percentile height and weight. All vaccinations received on schedule. 2002 - Loss of speech/fine motor ability 2 weeks after 15 month MMR vaccination. Self weaned at that time. 2004 – Diagnosed with ADHD, Sensory Processing Disorder (light, sound, touch), motor delay (with toe-walking), hypotonia, oral apraxia. Private speech therapy recovered speech by 2007 using the PROMPT method. 2005 - Private OT to improve fine motor control. 2006 – Enters school system with IEP. Kindergarten accommodations include OT, PT, weighted vest, ear muffs. 2008 - MMR / DPT boosters (told by GP that the original regression was a coincidence) and insect bite (bruise-like rash). New symptoms include: motor/vocal tics, emotional lability (including rage), age regressive behaviour, low level OCD, urinary frequency, diminished fine motor ability, insomnia, loss of executive function. Waxed and waned with strep/viral infections. 2009 - School IEP re-evaluated to include removal from classroom for tests with EA available to redirect to task, seating behind a screen for in-class work to reduce sensory overload, more time allowed for testing, decreased work and test load, removal to remedial class for lunch with EA available to redirect to eating. Accompanied by EA to the washroom to prevent wandering. 2010 – Diagnosed with ADHD, Tourette’s, Asperger’s, motor delay, probable PANDAS. Jan 2011 - shin/forearm pain, cyclic IBS, foot (sole) pain, dizziness, palpitations, chest pain, anxiety/panic attacks, pick-like skull pain, pain and stiffness at base of skull, tingling in extremities, chills and hot flashes, extreme fatigue, nightly fever. June 2011 - Negative Canadian ELISA, Igenex PCR positive Bartonella henselae, Negative Babesia microti. Negative lyme (IND IgM kDa 41; IND IgG kDa 39, 34. kDa 41++). CD57 18. Positive ANA (speckled type), heterozygous A1298C MTHFR. Multiple Abx, methyl B12, methylfolate, P-5-P, herbal homeopathic and supplement treatment by LLMD. 2012 – Vaccine exemptions acquired. Jan 2013 - Bartonella IgG titers declined from 160 (Jun 2011) to 80. CD57 16. April 2013 - Weaned from abx treatment at 80% improvement. Continued with Full Buhner bartonella herbal protocol, GF/CF/SF, organic, pastured, Terry Wahls / PerfectHealthDiet . Minimize EMF exposure. Sept 2013 - CD57 45. Oct 2013 - All symptoms (PANS and pain/fatigue) 95% resolved. No flares with viral or other infections. Herxing remains with changes in herbal protocols. Dec 2013 - Clinical babesia diagnosis. Improvement to 98% with addition of Buhner herbal protozoan treatment. ANA titers negative. PANS symptoms resolved. Regular classroom requiring no accommodations. B+/A student. Mar 2014 - Continued improvement in cognitive/executive function with increased dosages of cryptolepis/sida/alchornea (CSA) tincture. Sept 2014 - Continued improvement with the addition of red root. Resolution of EMF sensitivities with low dose cilantro tincture, diatomaceous earth and psyllium husk. Dec 2015 – To present. Symptom improvement to100% with removal of PUFA supplements (Cod Liver Oil, organic hemp oil). B+/A student in Grade 9, active in Celtic Dancing, curling, cycling, church Youth Group. Remains 1 year or so behind peers in ability to socially interact.
  8. Yes, the video is a good one. I feel better about our choices to eat organically and exempt from vaccinations every time I see it.
  9. DD14 was negative for lyme through Igenex, but she did have an IND result on one of the lyme-specific bands. She was positive for bartonella and negative for babesia microti. We treated bartonella with abx but didn't get to full remission. Her lyme WB (Igenex) started reacting more fully (more lyme bands popping up) as her immune response improved with bartonella treatment. It wasn't until we moved to herbal treatment with Buhner's full bartonella protocol plus the addition of some antimicrobial protozoan/babesia herbs that she became asymptomatic.
  10. Although in this article they mention improved socialization, even DD herself noticed a decrease in ticcing and other PANS symptoms during a fever. http://www.ageofautism.com/2016/07/immune-system-autism.html#more The researchers found that without interferon gamma, signals in a brain region called the prefrontal cortex run rampant, and mice tend to be asocial. The prefrontal cortex is involved in social behavior, and is thought to be overactive in some people with autism. “We show that an immune molecule directly controls brain circuits through neurons,” Kipnis says. ...This suggests that interferon gamma normally dampens brain signals in this region — and that it affects social behavior. Replenishing the spinal fluid of the mice with interferon gamma is enough to restore social behavior in the mice...The findings may explain the observation that some children with autism seem to become more sociable when they have a fever, Kipnis says. Elevated levels of molecules such as interferon gamma accompany fevers. In that same article, I posted two studies that seemed related to each other, and to my daughter. The first one showed "EtHg [THIMEROSAL] decreases IFN-gamma release". Further reading showed that IFN-gamma has antiviral activity and also important immunoregulatory functions. It is a potent activator of macrophages, has antiproliferative effects on transformed cells and it can potentiate the antiviral and antitumor effects of the type I interferons." Another study I have since discovered from the same year Megan was born, 1993, details this same phenomenon: "mercury interferes with T cell IFN-gamma production by affecting the intracellular availability of GSH." A comment below the article written by "Tim" is interesting: There are a number of herbs that increase IFN-gamma, such as guduci (which curiously enough was highly recommended by a commenter here to heal ADD). Stephen Buhner recommends using adaptogens instead of just trying to increase INF-gamma, because chronically high IFN-gamma causes its own problems. So his suggestion (in his book Healing Lyme) is to use Withania Somnifera (Ashwaghanda), Rhodiola, Licorice, Scutellaria Baicalensis (Chinese skullcap), and Astragalus. These all raise low levels and lower high levels. Give Ashwaghanda at night; Licorice in the morning; the others 3 or 4 times per day. Licorice should only be used short-term, the others can be used indefinitely. We use astragalus 500 mg 3x weekly.
  11. DD14 was ANA positive (speckled type) indicating connective tissue involvement. No other indicators of lupus though. She tested positively for bartonella and lyme, and was later clinically diagnosed with babesia although testing negatively for it (all through Igenex). As her infections were treated, her ANA returned to normal. It wasn't a reach to assume that lyme was likely responsible for the observed connective tissue destruction. She remains in remission.
  12. Why folic acid supplementation/food fortification (energy bars, cereal etc.) can be problematic if we have MTHFR deletions. /www.youtube.com/watch?v=cWFPRI6X7P4&inf_contact_key=30aab23c6df2132c1a540c189895646f33499b9de8e26120377f0d2028093332 DD has an MTHFR deletion, and I was supplemented with high prescribed doses of folic acid when I was carrying her. She was born with a bruise at the base of her spine which has only faded in the last couple of years. I think we are lucky that she didn't acquire spina bifida from my supplementation; which was prescribed to decrease just that risk.
  13. Our LLMD originally used biaxin/rifampin to treat DD's bartonella infection. It produced herxing (die-off) symptoms which included increased fatigue, shin pain, emotional lability and headache. We were on vacation during the herx and we ended up having to get a wheel chair to get her from place to place (or around museums etc.). Be aware of the possibility of an increase in symptoms or the development of new ones, which might be an indication of other underlying infections.
  14. I was going to ask about coinfections as well. DD14's PANS symptoms were caused by bartonella infection which is notorious for causing psychiatric issues. For DD is caused motor/vocal ticcing, ADHD, the gamet of PANS symptoms.
  15. Thank you! I'm glad this information is making it to the mainstream - everyone needs to be aware.
  16. In my opinion you need to do better than non-GMO. Pesticides, especially glyphosate, act as antibiotics destroying beneficial gut bacteria which are essential for proper immune response. Pathogenic gut bacteria = improper immune response. GMOs which are made to be resistant to glyphosate (RoundUp) will be sprayed before planting and during growth, so will contain a large amount of the chemical. However, many non GM plants, especially grains (gluten and non-gluten containing) and legumes are actually desiccated (dried down) with glyphosate or other chemicals, allowing farmers more control over time of harvest. These grains/legumes and the foods made from them will also contain significant amounts of pesticide. There has been a lot of work done by Seneff/Sensel on this topic: Stephanie Seneff's homepage: http://people.csail.mit.edu/seneff/ As for BBB, I saw this article yesterday which discusses the effects of metal adjuvants: Big Pharma’s Dirty Little Secret: Vaccine-Induced Autoimmune Injury http://www.greenmedinfo.com/blog/pharma-s-dirty-little-secret-do-bleeding-calves-narcolepsy-and-infertility-have-sa http://www.nvic.org/Doctors-Corner/Aluminum-and-Vaccine-Ingredients.aspx
  17. Depending on which bands are IND on your WB, you will be diagnosed by many LLMDs as having lyme. An IND result is an indication of weak reactivity, not non-presence of antibodies. Here is a site with a chart listing which kDa bands are lyme-specific. Just because a test gives you an overall negative result according to Igenex or the CDC, doesn't mean that you aren't infected. http://www.anapsid.org/lyme/wb.html Because of the immune suppressive nature of lyme and the common coinfections bartonella and babesia, a strong antibody response would not be expected if you have a high infection load. Bartonella can be a significant cause of psychiatric symptoms. Please consider that you may have this infection, either in conjunction with lyme or alone. I have had my own experience with depression, anxiety/panic and derealisation which resolved with bartonella treatment (in my case with the same herbs and dosages I was using to treat DD14's infection). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2100128/ For more information please google "bartonella psychiatric disorders". Muscle pain, especially in the larger muscle groups (ie the thigh area) and crushing fatigue are both common symptoms of babesia infection. Babesia infects RBC and decreases mitochondrial function, often lysing the cells. Anemia is also a symptom.
  18. 1. Lyme follow up- saw a LLMD in NY area- he was not very open to mold (forgot to put mold exposure in signature line ) or herbals and Im not sure how much he is considering bartonella. Considering the number of vectors that can and do transmit these veterinary diseases, I would not dismiss either bartonella or babesia infections in yourself or your children. http://www.ncbi.nlm.nih.gov/pubmed/24936029 http://ilarjournal.oxfordjournals.org/content/55/1/46.full https://parasitesandvectors.biomedcentral.com/articles/10.1186/1756-3305-3-36 Our experience has been that both of these infections can be treated with the herbal protocols recommended in Stephen Buhner's books. ….he thought mold was not as much an issue unless Lyme was causing one to become super sensitive to it….whatever- I know I will keep it in MY differential as far as causing neurotoxins….and plan on addressing it in the future if Lyme treatment isn't complete…. Good. Don't dismiss mold, especially if you have the genetic deletions that decrease your ability to detoxify. herbals- he said he doesn't do herbals but is fine with me doing them. Also good. If I had to do this over again, I would attempt the herbal protocols before resorting to antibiotic treatment (I found it to be more effective), or at least add in lowish doses of herbs to the existing antibiotic treatment. Our LLMD dismissed DD14 after 2 years of (don't be shocked - biaxin, rifampin, plaquinel, azithromycin, minocycline, tindamax and malarone) at 80% improvement saying that she could do no better. I didn't concur and continued adding herbs from first the entire bartonella protocol (which maintained DD at 80% for 7 months), and then the babesia protocol (even though DD was completely asymptomatic and negative testing for babesia through Igenex) which brought her to her now 100% improvement (no identifiable symptoms remaining). To make these gains I never used Buhner's recommended dosages. 1/4 of the recommended worked well for both of us (I treated myself along with DD, same herbs, same dosages). So my husband (we are both MD's) I don't even like saying that because despite having that title after my name I feel like I have been enrolled in the most intense medical class and have learned MORE from people on this forum than most ALL the M.D.'s I have talked with. I also don't want to be held accountable for medical advice…..I really don't have that much to offer anyways!! My only benefit I suppose is that other physicians have to give me some attn and not say Im insane (at least not too my face)??!!! But I digress- my point is my husband is a doctor too and this makes decisions quite sticky. I completely understand. My husband is a PhD biologist and was completely against the idea of lyme as a chronic infection that could cause psych symptoms. Treating was tricky and very contentious for the first year or so until DD started showing observable improvements. DH is completely on board now, even with herbals, which makes life much more enjoyable. Use your intuition, you will be surprised at how well it works. Let me tell you my "Spidy-sense" was tingling when our GP told me that all DD needed was Ritalin and a good spanking. I left and have never gone back. He was at one point the President of the Ontario College of Physicians and Surgeons, so never before had I second guessed him. At that time I just "knew" in the pit of my stomach that he was wrong. DD's ELISA was negative and even though she had every symptom of bartonella he refused to test for it. When her Igenex results came back positive for bartonella he still refused. I am open to herbals, I feel that mold is a factor, I am learning a TON about methylation and he is on board really only now with that Lyme is a real diagnosis (that took over a year but he IS on board and for that I am grateful). He likes this doc in NY- Im underwhelmed. He put my DD- on just doxy…..didnt mention biofilms or cysts. she is very sensitive to abx so maybe he will do more and just wanted to see how she would tolerate this to be safe so maybe I need to be patient…? tell me this is a marathon and not to be frustrated? I have added serropeptase (I feel I am misspelling that) and am considering adding grapefruit seed for a cyst buster for kicks…maybe…..I need to make sure she is detoxing well first. DD reacted very badly to GSE. The LLMD recommended it because of plaque buildup on her teeth from the antibiotics she was taking. Her ticcing became terrible. Blinking and head jerking so much she couldn't read and vocals so bad she could barely talk. The LLMD said yeast die-off. Buhner's associate said cytochrome P450 (CYP) 3A4 enzyme inhibitor. I don't know, but we have never used it again. Eventually it all calmed down after discontinuation and increased dosages of curcumin (Meriva) and Japanese knotweed - both anti-inflammatories. She is miraculously doing ok on doxy- should that concern me she is not herxing more- mild MILD at most… but I think her supplements are helping? and again doxy is metabolized mainly through the gut not kidney/liver….I just keep thinking - are these things all hanging out in cyst form now?? agh... Yup. -thoughts on doxy solo Mono therapy will not treat lyme or any of the coinfections. Please don't assume coinfections are not involved because you haven't tested for them. The body is not aseptic, and the fact that lyme (as well as bartonella and babesia) are immune suppressive will allow for reactivation of previous viral infections, as well as the body's inability to clear newer bacterial infections (strep for instance, or bartonella, or babesia etc.). - what do you do for detox- I have looked into burbur and pinella- does that really help? We tried burbur and pinella, as well as several homeopathic liver and kidney remedies which, as far as I could tell, didn't do a thing. Milk thistle (500 mg QD at bedtime) decreased ALT and AST back to normal when it started to rise during biaxin/rifampin treatment. I would love for it to help her short term memory issues…. By far the best treatment for DD's cognitive issues was CSA - Buhner's combination herbal tincture of cryptolepis, sida acuta, and alchornea. So much so that DD's teacher called to ask what I had done. I found myself that CSA helped my brain fog a lot, but that red root (which decreases the rouleaux of RBC across inflamed endothelial tissue (caused by both babs and bart), increasing microcirculation, was the real kicker. we do lemon water, vit. c and many toxic mopping supplements, probiotics, digestive enzymes…..I guess I wonder about liver and kidney detox specifically. We continue with milk thistle as well as lemon water, vit c, Epsom salt baths, magnesium citrate (150mg 8am, 150mg 3pm, 300mg 8pm), l-glutamine and NAC 3x weekly to help the body produce endogenous glutathione (while undergoing abx treatment DD used liposomal glutathione), probiotics, psyllium husk (to keep the bowel moving), and diatomaceous earth/organic cilantro tincture/orthosilicic acid as a natural chealtor of metals . 2. I am concerned about how she got this- maybe from our 16 acre farm running in the tall tall grass barefoot….OH MY WORD what were we thinking???? or from me???? so I have been really fatigued for a long time- thought it was concern about DD's issues or/ and having 3 kids back to back. Had a miscarriage 2 years ago in second trimester and recently with darn muscle aches and joint pains- what??!! tinging in feet, lightheaded, a need to lie down….agh but it all comes and goes and is worse when I slip up and eat gluten and around my period…..so I got the lyme test and I think my sweet and really supportive despite his hesitancy on LYME is going to croak It really doesn't matter now. Our LLMD's opinion is that DD acquired her infections congenitally because of her sensory issues at birth and her adverse reactions to her 15 month MMR caused perhaps by an improper immune response. My bartonella symptoms began approx. 4 years after DD's birth. In my opinion your children carry your infections, and vice versa. Your husband may well carry them too because spirochetes (at the least) have been shown to be transmitted through saliva and other body fluids. If his immune system is functioning normally (not as much stress, not as many vaccinations) he will remain asymptomatic until such time as his function decreases. My husband and 19 yo son are asymptomatic. But if they ever begin showing symptoms, I will know what it is. Here are my results and tell me what you think??? I have 2 other boys and see things now that makes me wonder for them- 6 year old- more tired, groin pains and occ stomachaches but other wise does BRILLIANTLY in school. 4 year old- some irritability but NOTHING like the daughter and processing well. thoughts? Muscle/tendon pain without injury should be considered. One of DD's major symptoms was stomach pain which would drop her to the floor several times a day. Cyclic IBS symptoms 2-3x monthly as well. Absolutely nothing I could pin down with allergic reaction/dietary restriction. These both cleared immediately with biaxin/rifampin (usually prescribed for bartonella). My test: (I did not do confections to save money…will reconsider) IGENEX IFA- neg IgM-Igenex and CDC neg 18 + 23-25- IND 39 IND 41+++ 83-93+ IgG- Igenex and CDC neg 41++ 45+ -Thoughts on it? kDa 39 is lyme specific. No other infection can illicit this response. Any reaction on this band indicates infection, even a weak one. Remember that lyme/co are immune suppressive and will result in an under-reactive result. Generally the healthier the immune response, the more reactive the result. http://www.anapsid.org/lyme/wb.html - would it be worth repeating after abx if you EVEN thought it was suspicious?? If you want to, but I would spend my money on coinfection testing, keeping in mind that there are many more species of these bacteria than are currently tested for. - I will not hold anyone accountable but I do value GREATLY your input. 3. I want to add herbals to DD and possibly(likely) start myself- looking into Buhner- reallllly like what he has to offer but he says to do tinctures for kids…. Start with the anti-inflammatories (JK) and the immune supportive herbs (cordyceps), and systemically supportive herbs, hawthorne, milk thistle. I used JK tincture pretty much throughout DD's antibiotic treatment. If these appear to help at all, then consider the antimicrobial ones (making sure detox and probiotics are in place - herbs can be very antimicrobial, especially cryptolepis ). Start slow. Make sure there is no adverse reaction. If you get to a point of herxing (die-off which can not be detoxed sufficiently by the body), decrease to the last dose that didn't cause a herx and stay there for a month or so before increasing dosages again. DD has corn/wheat allergy….rowing mom I think (if you want to give input PLEASE DO!!!) you made teas out of the powder on some? I am a retard so can you tell me HOW you did that? Like boil water, steep for x amount of time….did you add it to a chamomile tea or did the kids or you just chug it down?? You are not a retard, you are a doctor, I am a mere fisheries biologist who wanted to help her child. You were trained to think and solve problems - you can do this. Read Buhner's books thoroughly. The infusions are made by adding the herbs to boiled (not boiling) water and letting them sit until they reach room temperature (for each degree of temperature change different constituents are extracted). I usually do this in the evening for the next day. Boil water and measure 1/2 cup into a Pyrex measuring cup. Add all of the next day's herbs. ie, if you are dosing 1/3 tsp 3x daily, add 1 tsp. Add all the powdered herbs you will be using into that cup. For instance we are now using 1 tsp houttuynia, 1 tsp Japanese knotweed, 1/2 tsp cordyceps, 1/2 tsp lion's mane, 1/4 tsp reishi daily. This all goes into the Pyrex cup with boiled water. Cover (I use plastic wrap) and let sit until cool. Put into the refrigerator. If you are dosing 3x daily, stir and measure 1 and 1/4 oz of the infusion into a shot glass (herbs and all) and then pour this into a larger glass with some water in it. Add the tinctures that you need (ie I add rhodiola, ginger, turmeric, cilantro, red root and CSA tinctures at this point) and then drink it down. Follow immediately with a shot glass of pomegranate juice which Buhner recommends and will cut the taste of the herbs. You get used to it after a while. The next dose will be 1 and 1/4 oz, the final dose will be the remaining infusion. I think the main reason I haven't done herbals is because its taken a ton of time to wrap my head around it AND the method of intake,……I may consult an herbalist but would love your input….really wish the LLMD we saw would just DO the decisions for me (I lie) ….I guess to have dialogue about what to do would be great (I think I will always have my hand in this somehow…. At one point I wished this as well, and I was happy to find our LLMD whom I thought would solve all the problems for me. But she couldn't get DD to 100% and wasn't versed in herbals so I had to head out on my own. The dialogue will be between what you read in Buhner's books and what you intuitively think needs to be done. You can of course consult with Julie or the other herbalists he recommends on his facebook page, but please know that they work a lot by intuition as well. This is not an exact science but a trial and observation kind of thing. - herbals- method of taking for kids….. - which herbals are best for Lyme- would you do ALL the suggested or just knotweed and cats claw?? Or add according to her main symptoms- neurocognitive…… Neurocognitive/neuropsych - I would treat bartonella. All the herbs, starting with low doses of everything before increasing anything. The protocols are synergistic. Together the herbs are more effective than apart. would you add bartonella to the mix or do Lyme first/bartonella second…if I mix it seems like a ton of herbs??? again I prob should get a consult…. There are lots of herbs, you are correct. I used an Excel chart to daily chart/graph symptoms vs protocol. I did this for 5 years. It helps to be able to go back and visually assess the herxes and the improvements. LLM was good enough to give me a template and it made all the difference. If you would like me to give you one, just ask. We never treated lyme per say. Only bartonella and babesia. During bartonella treatment DD's lyme WB began showing more and more banding patterns. The LLMD said this was because her immune response was improving. Most of DD's symptoms were bartonella and PANS. ok thats it for now- I am indebted to this forum and moms that never give up. Never.
  19. Could you PM me the name of the doctor on Ontario too please? There was no one 5 years ago. Thanks.
  20. Unfortunately, I think you are out of luck on Ontario. Before investigating Lyme/coinfections, our pediatric psychologist told me that IVIG for PANDAS was not available to anyone unless they were incapacitated. DD14 didn't qualify. The psych told me she would refer me to the Tourette's clinic at Sick Kids in TO, but we never went. The LLMD we saw in Buffalo told me that DD14's PANS was caused by a bartonella infection (DD was negative on the Canadian ELISA test so she couldn't be treated here. Our GP didn't test for coinfections). We treated for 2 years with abx and then weaned to Buhner's herbal protocol for bartonella and then babesia as well. DD14 is now asymptomatic. Sorry, I know this is no help whatsoever.
  21. @ MyLighthouse and @ Johnsmom. I totally agree with LLM and momma2alex. I would investigate bartonella infection if psychiatric issues are involved.
  22. In DD14's case bartonella/babesia were the cause of her PANS symptoms. All have resolved. Keep investigating infections; you have seen her symptoms resolve with treatment. You will find the answer.
  23. These were many of DD14's symptoms exactly. Every single one of them resolved with treatment for the lyme coinfections bartonella (with antibiotics) and babesia (with herbs only), speech therapy, OT and PT. Her long term memory remains exceptional. In our case each of these symptoms were medical issues associated with her infections. None were "psychiatric" or related to "autism", although she did have a diagnosis of Asperger's at one point. DD's anxiety and panic attacks were caused by bartonella, and resolved pretty much immediately with antibiotics specific for that infection. Her oral apraxia and motor delays started with her 15 month MMR and required several years of speech therapy (PROMPT method which retrains muscle awareness), PT and OT (for hand writing and other fine motor skills) to overcome. Loss of motor function is one of the symptoms of PANS/PANDAS and DD lost obvious writing/drawing skills with flares of her infections. Her inability to follow simple instructions (let alone multistep ones) was due to brain inflammation which produced her symptoms of encephalitis (light, sound, touch sensitivities, ADHD, stiff neck, headaches). Treatment for bartonella helped here, but it wasn't until we included babesia herbs that her executive function blatantly improved. Because of her ADHD symptoms she was highly distractible by any and everything, and problem solving and especially math was an issue. Every night I sat with her and we would review the next days math - that way I could introduce new concepts and if she was too distracted in class to comprehend, at least she would remember some of it from the night before. She had an IEP with accommodations for extra time, fewer test questions, removal from class with supervision to keep her on task. She sat behind a screen so that she wouldn't be visually distracted and wore ear buds to decrease sound distractions. From JK - Grade 1 she wore a weighted vest. She was extremely disorganised. I had to go to school every day (Grades 2-5) to clean up her desk and collect homework, find out what was on the agenda for the next day as well so I could introduce new concepts to her. I had to dress her and brush her teeth daily because she was too distracted to do so herself. No amount of reminding would work. She had no concept of time and would need someone to take her to the bathroom at school and remind her to go back to class. She had to eat lunch with the remedial class because she would forget to eat. It was a hard, hard time and I know exactly what you are going though. I am not the same person I used to be and I continually worry that she will relapse although she has been asymptomatic for a couple of years now. I spend entirely too much time on the computer reading alternative medical sites and have little time/patience for frivolities any more. Take care. Louise
  24. You can't allow your children to eat pesticide laden crap and expect their gut microbiome (and thus immune response) to function. Environmental toxins (and that includes vaccinations) are slowly killing our children and producing improper immune response. We all need to WAKE UP to this fact. http://people.csail.mit.edu/seneff/ We need to detoxify them (see Gerson in the video) and support proper immune response using nutritionally dense diet (see Terry Wahls). The problem is not the infections. Thanks for the video sf_mom. I have been contemplating prophylactic Sota for a while, even though DD14 is now totally asymptomatic.
  25. For that reason it would be best to figure out which infections you are dealing with. As you say, viruses will not respond to abx, nor will every bacterial infection respond to the abx regularly given for strep-induced PANDAS. If you feel that viral infection is the trigger, treat the virus. I would try finding something other than an antibiotic to function as an anti-inflammatory. It's just not worth destroying your gut microbiome when there are other options.
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