rowingmom

I would suggest taking her off of Naproxen to see what happens and then add it in again to see what happens. This is the only way to find if Naproxen is actually a trigger for her. For encephalitis/brain inflammation I found Japanese knotweed to be very good. If you are interested you can purchase the tincture here: http://www.woodlandessence.com/herbal.htm I used 1/4 tsp of this tincture 3x daily along with the powdered form (from 1stChineseHerbs) in infusion (tea) at 1/4 tsp 3x daily. You can use more during acute flares. DD was 90 lbs at the time Stephen Buhner also recommends kudzu for brain inflammation, although we have never tried that one. I would take her opinion on symptom activation seriously. She might be young, but she is the only one feeling the results of protocol change.

OK. You asked for it. My suggestion is that because lyme is so immunosuppressive, there is no such thing as having no co-infections. If ticcing and OCD are involved I would retest for bartonella. If you are hesitant to use antibiotics, find a LLND or naturopath who will help you with herbal protocols. We didn't find babesia until we trialled babesia herbs and got a babesia-specific herx: air hunger, chest pressure, sighing, dry cough, thigh pain; all symptoms she had never had before. DD had previously tested negative for both babesias through Igenex. It was only by treating the negative-testing babesia that her bartonella symptoms finally fully resolved. Perhaps your son is in the same boat, with an underlying coinfection that is holding him back. For DD, ticcing was entirely associated with bartonella die-off toxins, never with babesia treatment. If by increasing his supplements you are also improving his immune response, then yes, you could be producing a die-off of some kind. He may also be having problems detoxifying so you need to investigate possible MTHFR deletions and address those. We have never used ibuprofen for brain inflammation; preferring to go a more natural route I chose Buhner's recommendation of Japanese knotweed and found it to be very helpful. DD used Japanese knotweed pretty much throughout her antibiotic treatment and we continue to use it now. Buhner also recommends kudzu as a good anti-inflammatory for any type of encephalitis.

For DD13 (now in remission for 2 years), ticcing started overnight, about 1 month after her 7 year MMR booster (with tDap at the same time) and 2 weeks or so after an insect bite with atypical non-EM rash. Some of her other PANS symptoms had been going for a while. As we have gone through the process of treatment for lyme/bartonella/babesia I have kept a daily chart/bar graph of protocol change vs symptom level. By looking back at these charts throughout treatment it was obvious to me that DD's ticcing was associated with bartonella die-off toxins - ie part of a herxheimer reaction. It has never been associated with babesia die-off, but declined with babesia treatment as her body became healthier and more capable of detoxing. I would research detoxification and especially the possibility of MTHFR deletions. Search the forum for LLM's archives on this topic.

DD13 had the same initial reaction to strep abx that you are seeing in your son. The first round of PenVK resolved ticcing and other PANDAS symptoms within 3 days. She remained asymptomatic for the next 7 days while still on abx. Within 4 days of discontinuing treatment her ticcing returned. The next round of PenVK worked immediately, but after 5 or so days of the 10 day course, ticcing started to return - even while on abx. Whether the infections (that I now know to be bartonella and babesia) were not being addressed by PenVK, or whether she was having a herx at the end of the second round, I don't know. Perhaps her initial improvement was due to some anti-inflammatory action of the antibiotic. Anyway, if you are not using the proper antibiotic for whichever infection is present, you can expect backsliding.

I forget - have you tested for coinfections, especially bartonella which is notorious for causing psych symptoms? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2100128/ https://www.youtube.com/watch?v=7kG7BHlByeQ

This was just posted on another lyme forum. https://www.youtube.com/watch?v=uYEHsRRxrQw Leading Bartonella researchers and clinicians, Dr Ed Breitschwerdt DVM and Dr. Bob Mozayeni MD present the latest scientific findings and clinical observations in support of a more accurate and timely diagnosis of #‎Bartonella infection, plus treatment considerations

T&A - tonsils and adenoids. Please test for lyme and the coinfections as well. These can include bartonella, babesia, ehrlichina, anaplasma, mycoplasma, the rickettsias. It does end, but only if you find the offending infection.

Rowingmom- silly question, but do you rotate your probiotics during the day or on different days? I was thinking of adding another one to the mix - maybe align. thx We rotate through the day and on different days as well. Mon, Wed, Fri - Align at 10:00 am, Tues, Thurs, Sat - Culturelle at 10:00 am. Then at 5:00 pm we use one of either ReNew Life Ultimate Flora, AOR Probiotic-3, or Prescript-Assist, rotating daily. Sundays are off. We also eat fermented vegetables (inoculated with both ReNew Life Ultimate Flora and AOR Probiotic-3) at night after tooth brushing to help colonize the mouth and sinuses while sleeping.

Ascorbic acid (Vitamin C) to bowel tolerance?

Please read this thread posted only a few days ago: http://latitudes.org/forums/index.php?showtopic=23961 MOM2AMAZ2BOYS is seeing Dr T as well and we try to answer some of her questions.

DD13's PANS was caused by bartonella infection, and one of her earlier symptoms was recurrent strep infection. PANS/PANDAS doctors are not very cognizant of the effects of lyme and the coinfections. If you are not seeing a good response with one of these doctors, I would look for an ILADS LLMD or LLND in your area. Unless Dr T has run a lot of immune function testing, I don't think he can say that your DS's immune system is fine. The coinfections effect different components of immune response which I believe can not be assessed through Pneumoccoccal vaccine serotyping. Antibiotics are making his symptoms worse because they are causing die-off of gram negative bacteria and release of their endotoxins. These endotoxins (and the inflammatory cytokines that are produced by the body in response to them) are the cause of his primary symptoms. Antibiotics just produce more die-off and toxin release than his immune system was capable of. You have to use probiotics. Culturelle is a good one, but the gut contains thousands of species, and replacing 1 species won't help much. A main portion of the immune system is housed in the gut and is the result of a properly functioning beneficial microbiota. We rotate Align, Culturelle and ReNew Life Ultimate flora. As well as consuming fermented vegetables on an almost daily basis.

DD's treatment started in June 2011, by Nov she was still dealing with these symptoms (levels from 1-10, 10 being worse). When we began treatment, each symptom was at a level of 4 or 5. Shin/forearm pain 5; Headache (pick-like) 3; Stomach pain/nausea 1; Motor/vocal tics 5; Sore throat 1; Emotional lability 4; Sound sensitivity 4; Concentration (poor) 4; Foot (sole) pain 2; Tingling extremeties 0; Joint pain 0; Fatigue 4; Hot flashes/chills 0; Light sensitivity 3; Night sweats 0; Neck pain (base of skull) 0; Palpitations 0; Dizziness 0; Panic attacks 0; Night waking 0; Incontinence 0. Any increase in symptoms you see is likely due to herxing. Fortunately OCD wasn't one of DD's problems, other than she would draw the same picture over and over and over, in school while she was supposed to be working, in school when she was supposed to be eating lunch, at home when she was supposed to be doing homework, etc. Because her symptoms started pretty much at birth, she was already accommodated (IEP) with redirection and a smaller work load at school. Also, in 2011, she was in grade 5 so not as much was expected. Nothing that I couldn't teach her at home beforehand so she would know what to expect the next day at school. She even had to be redirected to eat lunch; had to go the remedial class, or she would draw and forget to eat. Seriously, I spent so much time at school, talking to the teacher, cleaning out her desk etc. because she was totally incapable. She spent most of her spare time by herself and didn't bother interacting with other children. After the 2 years it took her to improve to a point where no one could notice that she still had symptoms, we put her in a different school and they accepted her there. It was a bit brutal, but you do what you have to do. Know that if you keep at it, you will find the answer. I'm glad you have found a responsive Dr who understands that you can't push too hard. Now you know not to try that again.

So yesterday you increased rifampin and today introduced flagyl? The cyst busters flagyl and tindamax both cause significant die-off, as can rifampin. Poor kid, I'm sorry. If I was you I would do one for a while before introducing the next. There is always an initial die-off when increasing dosages or starting new abx. You need to wait until her body has processed the first load of toxins before adding a second. Don't push so hard killing bacteria. It's easier on kids if you go slow.

Lyme, bartonella and babesia can all cause immune suppression. As can eating pesticides (especially glyphosate) which decimates beneficial gut bacteria (and thus immune function), and having a burden of metal adjuvants from vaccinations. Bartonella and babesia were both responsible for DD's PANS symptoms. Bartonella was responsible for most of them; treating babesia helped most with cognitive/executive function. Treating for lyme would not necessarily treat any existing coinfections.

DD13 had diagnoses of ADHD, SPD, Tourette's and Asperger's. All of which have been rescinded since completion of treatment for bartonella and babesia. Her ASD was not severe, however she was functioning 2-3 years below NT in behaviour and executive function. She has also seen vast improvements in her spatial and math abilities. No one was more surprised than our Pediatric Psychologist. DD recovered from oral apraxia after several years (ages 3 to 6) of intense private speech therapy using the PROMPT method which retrains muscle movement of the cheeks, jaw and tongue. Her loss of speech was concomitant with her loss of other gross and fine motor control which began within days of her 15 month MMR vaccination. Our LLMD says her immune and detoxification systems were likely compromised by lyme/bart/babs at the time. As you mention, I also realized that there was a more functional and intelligent child trapped and waiting to be released. All a mother needs is motivation! You can not feel guilty about passing infections to your child (this happened in our case as well). Mothers of all species pass infections to their newborns. The current mainstream medical paradigm that both adults and babies are aseptic until symptoms manifest is completely incorrect. It is only the proper balance of a functioning immune system with bacteria/viral load that allows health to flourish. If the immune system is not functioning properly, even beneficial bacteria can become pathogenic when they are not kept in check. The problem starts when either the mother's immune system is compromised (and she passes along a high load that the baby's system can't handle), or the child's system becomes more compromised and infection is allowed to proliferate. Please take time to look though these papers written by MIT scientist Stephanie Seneff. There are quite a number of them, but they point toward the pesticides that we ingest (especially glyphosate) and the metal adjuvants in vaccinations (especially aluminum) as causes of immune suppression and autoimmune response. http://people.csail.mit.edu/seneff/ Here is the paradigm change. This site is more alternative, but gives cause to think. http://www.naturalhealth365.com/vaccines-aluminum-neurotoxicity-1536.html

You are right about the flour. 100% natural means nothing other than it comes from the earth. The fact that it is desiccated with pesticides is obvious in the omission of the "organic" label. Don't be fooled into complacency. We vote for or against organic foods with our pocket books. Mother Earth products - dried vegetable soup: About the Product Non GMO and gluten free Can store up to 25 years in proper conditions Snack out of the bag or use with meals or camping Great source of essential vitamins and minerals; One full quart in plastic jar Look for all our other great product's; Dried veggies, freeze dried fruits and veggies, true dehydrated beans and TVP Textured vegetable protein: http://www.livestrong.com/article/495664-harmful-effects-of-textured-vegetable-protein/ Textured vegetable protein, TVP, is also known as isolated soy protein. It is a protein derived from soybeans, but the processing of soybeans into TVP includes chemical alterations. The makers of TVP first mix soybeans, with the oil removed, in an alkali solution, wash them in acid and then neutralize them in a different alkali bath. They then spray-dry the resulting soy curds using high temperatures that turn the curds into powder. More high temperature and pressure applied to the powder results in textured vegetable proteins that can be shaped into strips, chunks or granules for use in foods as meat substitutes. The processing adds flavor enhancers, artificial colorings, emulsifiers and thickening agents, including nitrosamine, which is a carcinogen -- a substance known or is suspected to cause cancer. Textured vegetable protein may not be harmful for everyone, but it contains a hidden ingredient that causes reactions in some people. Textured vegetable protein, has MSG, or monosodium glutamate, a common flavor enhancer. If you are MSG-intolerant, you may experience unpleasant reactions to eating foods with textured vegetable protein. People with soy allergens may also experience discomfort and problems from eating textured vegetable protein

Can't help thinking that this is another reason I'm glad I'm vegetarian Less to worry about! OK, so plants are sprayed too, but I'd imagine that with meat you might get tissue accumulation - like the way DDT accumulated in the bodies of birds that ate contaminated insects, and then in the bodies of birds that ate those birds, so that it got more and more concentrated the further up the food chain it went. They desiccate conventional crops (non-GMO) with pesticides in Canada as well. pulse.ab.ca/images/uploads/page.../July_2015_MRL_Chart_Update.pdf I'm not sure about the UK. Good for the UK for taking a stand.

That is correct. However food that is simply labelled "non-GMO" can still contain glyphosate. It won't be used so much before planting because the non-GMO plants can't handle it, but it will be sprayed before harvest for desiccation and ease of combining. We then get to eat it. Pretty much all conventional dried grains (wheat, oats, psyllium, barley, corn etc.) and legumes (dried/canned beans, lentils) will have been sprayed with desiccant. CAFO (feed lot) animals are fed these GMO and/or desiccated grains and the pesticides are incorporated into their tissues. We are dosed when we eat it. So when you see "grain fed" labels on your meat, it's best to run the other way. Essentially, anything not labelled "organic" contains either pesticides and/or GMOs. In my opinion this is just one of the reasons why so many people today are dealing with immune dysfunction, autoimmune disease and cancer.

These chemicals destroy our intestinal probiotic bacteria, rendering our immune systems incompetent. http://people.csail.mit.edu/seneff/ http://www.naturalnews.com/050830_chemical_violence_GMOs_glyphosate.html The U.S. Department of Agriculture's recent approval of genetically modified organisms (GMOs) resistant to new herbicides will soon unleash a flood of new toxic chemicals across the nation's agricultural heartland, observers have warned. Previously, nearly all GMO crops approved for planting were engineered for resistance to a single herbicide: Monsanto's blockbuster product Roundup (glyphosate). The widespread adoption of these crops led to an explosion in Roundup use, which in turn spurred the evolution of Roundup resistance in agricultural weeds. In response to the proliferation of Roundup-resistant "superweeds," GMO companies have turned to engineering multi-herbicide resistance into their crops. Specifically, GMO crops are now available resistant to both Roundup and the Dow herbicide 2,4-D, or Roundup and another herbicide, Dicamba. But as critics of biotechnology have repeatedly noted, the adoption of these new GMOs will merely exacerbate the problem - encouraging still more herbicide use and the evolution of ever-tougher superweeds. In a recent article, Dr. Jonathan Latham of the Bioscience Resource Project referred to the process as "a vicious cycle that threatens both our environment and our food supply." Learn more: http://www.naturalnews.com/050830_chemical_violence_GMOs_glyphosate.html#ixzz3jCxPFuNi

I have come to rely on intuition. I know it sounds silly, but in my heart I just know what is really right or really wrong. Don't completely dismiss these feelings.

Wonderful to hear that you have found some "real" help. I can't imagine that they found both bartonella and mercury at Sick Kids. Be aware that they will not treat her bartonella properly, but your integrative doctor has probably already told you this. Our family doctor, who was at one point the President of the Ontario College of Physicians and Surgeons, refused to do his own bartonella testing even after I had run Igenex and it had come back positive. All of DD's symptoms were blatant bartonella as well. He insisted I give her Ritalin and clonopin, otherwise he would not work with me. I left and will never go back. Several walkin clinics refused to work with me also. At least you have help near home. I hope you find the source of contamination.

We have never tested DD13 for metals, but she was quite electrosensitive with a significant increase of symptoms especially ticcing and shin pain/headache when exposed to EMFs in malls, library, museums, school etc. It makes sense to me that tissue metal burden would increase electrosensitivity. I too was nervous about IV chelation, and apparently our LLMD was as well because she never did suggest it for DD. I saw others in her office undergoing the procedure, but none were children. When a bit of motor ticcing was the last symptom to resolve after undertaking Buhner's bart/babs protocols, I decided to try a more natural chelation. We use 4 drops of organic cilantro tincture (Flower Fairy Herbs) 3x daily (8am, 3pm, 9pm). 2 hours after the first 2 doses (at 10am and 5pm), I dose DD with 1/2 tbsp. diatomaceous earth. She also takes psyllium with the second dose of DE (to keep everything moving along). The original protocol I found used pascalite clay. But being concerned about the potential amount of aluminum in the pascalite and not knowing the state of DD's intestinal lining (leaky gut) I opted for DE. http://www.drdavidwilliams.com/cilantro-clay-for-detoxification/ The decline in DD's motor ticcing was noticeable within 2 days. We have kept up the regimen and a mouth stretching tic only temporarily returned for a month after dental extractions. They have resolved again since her teeth have shifted. DD's electrosensitibity has also significantly resolved, as has my own ( I am dosing myself as well). She can no longer tell when she is an area with WIFI, although we try hard to keep exposure at a minimum at home (wired computers and phones, cell phones on airplane mode most of the time, circuits off in bedrooms at night). One caution. Thinking that more would be better, I initially increased cilantro dosage to 10 drops 3x daily. Yeast infection was the almost immediate result. Apparently the body will allow yeast to bloom in the gut if there is a large release of metal into the intestines. The yeast helps to sequester the metal and keeps it from being reabsorbed. More is not better here.

Our daughter's tics, raging, social regression and emotional lability were caused by toxins produced by bartonella die-off. Her executive/cognitive function issues were caused by a babesia/protozon infection. I would suggest you test for both bartonella and the babesias.

Because you are using some of Buhner's herbs for babesia/bartonella, I think you would be well served by reading his 2 coinfecion books. You will learn plenty from them. Buhner uses both artemesia and CSA for babesia, but CSA was one of the herbs that really helped resolve DD's remaining bartonella symptoms - she did have an asymptomatic, negatively testing (through Igenex) strain of babesia which showed up as a herx when I introduced CSA. Buhner says not to use artemesia over the long term. You will know if it is working (it might not depending on your daughter's strain of infection) and if it is, 30 days should be sufficient. It sounds like you are hitting a lot of really good bases with her protocol, but a couple more I would suggest: A good multistrain probiotic at least twice daily, the last preferably right before bed so it has the night time to colonize. We also eat homemade probiotic inoculated sauerkraut daily. Detox protocols including plenty of magnesium (to bowel tolerance) throughout the day, Epsom salt baths if she isn't sensitive to sulphate, fresh lemon juice with water and stevia a couple of times daily. Her psychiatric issues (ADD, raging, frustration etc.) and fine motor difficulties will improve with bartonella treatment, but be aware that herxing will cause these symptoms to flare until her body is able to detoxify from die-off. DD had been dealing with ADHD and SPD until a bite with a rash as you described (not to mention her 7yo MMR booster 2 weeks before which may have been responsible for compromising immune function). Bruise-like colour with a reddish ring around the periphery. At that point Tourette's began along with the other PANS symptoms. At this point our pediatric psychologist has rescinded DD's diagnoses of Tourette's, ADHD, SPD and motor delay and she no long requires IEP accommodations in school. The turnaround has been amazing. Your daughter will heal just fine. Keep up the good work.

Make sure you are taking enough magnesium. It helps with both detoxification and relaxation. We take 150 mg mag citrate powder 2x daily (8am and 3pm) and then another 300 mg before bed along with 4-5 drops of melatonin. We both sleep like logs.