rowingmom

We went paleo first, and after all I have read about the GMO grains that they use in GF products, I plan to stay that way. I researched it a lot when I thought DD's IBS issues were food based (it actually cleared up when she started bartonella treatment). We tried so many elimination diets, it was crazy, but I came upon paleo and it made sense, so I went with it. We simply do not eat bread. Hamburgers are eaten with a knife and fork. Spagetti sauce is eaten over spagetti squash noodles. Full paleo is hard. We only managed for several months. It is pretty low carb, and the carbs they allow tend to be high oxalate (sweet potatoes), so we have ended up going more with the PerfectHealthDiet. This is a great site with lots of research to back up the Jaminet's recommendations. We eat more vegetables than the Jaminet's recommend, leaning more toward Terry Wahl's prescription. We eat potatoes and white rice (almost always cut 1/2 and 1/2 with mashed cauliflower), both cooked and cooled to produce resistant starch. 3 mornings a week we have cooked soaked/fermented oatmeal. That's my only concession to grains. Hopefully the fermentation eliminates the lectins and phytates that can cause gut damage/leaky gut. We eat a fairly large amount of fat (coconut, grassfed ghee, red palm oil, olive oil) and this helps with hunger. I haven't been entirely successful in changing my husband's eating. I buy him 1 loaf of organic bread per week so he doesn't feel too put out, but the rest of us don't touch it. He eats the breakfasts, lunches and dinners I make, but I know he heads off to Tim Horton's for a treat. That's up to him. He's not my kid. I guess the diet just kind of evolved. I started giving the kids dinner leftovers for their lunches so that eliminated sandwiches. Then I started substituting every other breakfast with wilted arugula/kale, some beets, maybe an egg (just the yolk for DD) with some bacon/ghee/seasalt on top. Then if they don't have greens for breakfast, I make them some when they get home from school. At this point they are starved and will eat anything. I don't keep any snacks in the house. If DD and I make macaroons, they are gone in a flash, but it's fun. We do this every couple of weeks. I make pancakes from fermented oats, almond flour and coconut flour with banana for sweetener, and muffins from pretty much the same recipe. We do some dark chocolate, but again it makes DS break out, so I can't use that in baking. We make smoothies with coconut milk, whey powder and frozen berries.

Our family had no choice in the matter. If they did not want to eat the gf food I cooked, they went hungry. Fortunately, along the way our acne-prone 15 year old, now 17, found that by eating gf/paleo, his acne cleared up. It was only then that he realized that our new diet was perhaps healthier than the old one. He is also one of the few kids on his hockey/lacrosse/rowing teams that has no abdominal fat issues. The kid can eat a truck load of meat/veg/some fruit/resistant starch and gain only muscle. He's pretty proud of his physique. They will come around, but you have to use some propaganda too. Have them read Mark's Daily Apple. Mark is an easy to understand paleo proponent that tells things like it is. Our bodies evolved eating certain kinds of foods and we are naturally more healthy when we eat them. It's probably easier to get the older teenagers on board as they are more concerned with appearance.

The permanent stain of unerupted adult teeth with tetracycline is different from the stain you are seeing. DD's teeth were unsightly while she was on abx treatment. I think this has to do with interruption of proper probitic flora of the mouth (even with large doses of probiotics to help the gut). There was nothing we could really do except brush well 3x daily, and even this didn't clear up the problem completely. Our hygenist understood and we increased DD's cleanings from once every 9 months to once every 6. Xylitol tooth paste (we use Spry) seemed to work the best for this, I think because of it's anti-biofilm/plaque properties. The silica it contains is a good scrubber, as salt can be too. One year away from abx and with lots of fermented vegetables and probiotics, her teeth are beautiful again. This problem is not permanent, just do the best you can.

Good for you for finding this mdmom. There seem to be so many bacteria capable of causing encephalitis in people with compromised immune systems. Who thought to test for this? Not the mainstream docs, I would guess. Brucellosis can apparently be tick-borne, which means it is probably carried by other arthropods as well. http://www.drsusanmarra.com/services/brucellosis Symptoms of Brucellosis include: fever, night sweats with a strange odor, chills, weakness, malaise, insomnia, anorexia, headache, joint pain, constipation, nervousness, depression and impotence. Many organ systems can be affected by Brucella infection including the: brain (encephalitis), heart (endocarditis), joints (arthritis), testes (orchitis), and prostate gland (prostatitis).

We originally sought help from an LLMD for DD's pain symptoms. When I asked about DD's PANS symptoms the LLMD just smiled and said that those too would resolve with bartonella treatment. She was right, infections other than strep can cause these types of neurological symptoms. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

Just to give you an idea of DD's symptoms that were similar to your daughter's, I will edit your post, bolding past symptoms. All of these symptoms started resolving (after some herx reactions) with abx treatment for bartonella. She is now free of all of them except cutting with scissors, which is still messy for her age. I hope this is helpful. For our daughter, all of these symptom's were the result of a bartonella (and other unknown, possibly protozoan), infection.

If you read our DD's symptom time line in my signature, you will see that she developed oral apraxia at 15 months, after her first MMR vaccination. She lost all speech, which at that time included 2-3 word sentences. At the same time she also lost fine motor ability and started toe-walking and raging as well. She was dx with oral apraxia at age 3.5 and was helped immensely by a Speech Language Pathologist using the PROMPT method along with lots of practice. PROMPT worked like a charm - she said her first word in 2 years after the first session. PROMPT is an acronym for Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a tactile-kinesthetic approach that uses touch cues to a patient’s articulators (jaw, tongue, lips) to manually guide them through a targeted word, phrase or sentence. The technique develops motor control and the development of proper oral muscular movements, while eliminating unnecessary muscle movements, such as jaw sliding and inadequate lip rounding. http://promptinstitute.com/index.php?page=what-is-prompt3 I'm not sure if this method is available in your area, but it would be worth investigating. DD has always had difficulties with motor delay, and doesn't pick up new movements easily. I had to push her on her tricycle for years because she couldn't make both feet peddle at the same time and in the same direction. One foot would always be applying the break. But I find that when she finally grasps a movement, she will then be good at reproducing it. She rides a bike like a fiend now! With DD, I have had to literally teach her every fine hand/finger movement (writing/colouring, throwing/catching, scissor work, using a ruler etc - this took some intense OT), every foot/leg movement, and every facial/mouth/tongue movement. She couldn't blow out a candle until she was 10, nor could she spit. PROMPT helped with this too. With PANS flares she would frequently lose handwriting, and sometimes the ability to even hold a pencil but she never again lost speech. She now talks my ear off , and has essentially lost all of her diagnoses, including Aspergers, Tourette's and ADHD.

There was a connection for us. "Part of Gram-negative bacteria's danger lies in certain disease-causing components in the bacteria's outer wall. The most significant, say the researchers, is lipopolysaccharide (LPS). LPS fragments from damaged bits of the bacterial walls are released locally, triggering an immune response. When they come in contact with specialised TLR4 receptors at the surface of 'sentinel' immune cells, chemicals are released that recruit other immune cells, inducing swelling, tissue injury and eventual lyses and clearance of the bacteria" (My bolding). .....Hopefully, and only if the immune system is competent. Otherwise I think we end up with continuing recruitment of incompetent (unable to properly lyse bacteria) immune cells, and continuing stimulation of the immune system (ie, TLR4) because the bacteria are not being lysed; increasing pain and inflammation. Steroids decrease pain/inflammation but the underlying cause (in our case gram negative bacteria/LPS) will remain if the infection is not properly addressed. DD's PANS symptoms were caused by the gram negative bacteria Bartonella hensalae. Her pain and inflammation eventually decreased with bartonella treatment. Heightened inflammation and pain produced by LPS resulting from from introduction or change in abx protocols (aka - herx) and can be expected with gram negative bacterial infection; and this certainly was true for us. We also found exacerbation with strep infections, but only in symptoms associated with bartonella die-off. My feeling is that strep probably served to further tie up DD's immune system, allowing bartonella to florish and the inflammation cascade to intensify. Gram positive strep infections would not cause similar LPS reactions in TLR4, although the article does mention: "TRPA1 proteins are already known to be a detector of multiple harmful compounds contained in smoke, mustard, wasabi and tobacco". So are perhaps sensitive to the exotoxins produced by strep bacteria as well.

If lyme is negative or IND, please don't assume that the coinfections (mycoplasma, bartonella, babesia, ehrlichia, RMSF) are not involved.

DD was unable to tolerate bactrim either. Her initial symptoms were those of a large herx, but then several days later she developed urticaria (so allergic reaction) . She had to switch to biaxin.

Now and then doesn't work well for detox. It needs to be done daily. Epsom salt baths are important as well. You really need to make sure that your son is either having plenty of BM's to eliminate the toxins that his body is dumping into his intestines before they can be reabsorbed, or take something that will bind the toxins and keep them in the colon (ie charcol). We went the route of soluble fiber - psyllium/metamucil. This also needs to be taken apart from other supplements so they aren't bound in the soluble fiber matrix. We saw the symptom escalation that you are describing only with tindamax, but it wasn't a gradual escalation. DD herxed and was unable to detox from it, and for this reason our LLMD suggested pulsing. For us, this worked. With other abx, DD's herxing would began within a day or two and then resolve within the week. I would concentrate on detoxing and perhaps investigate whether compromised methylation (MTHFR testing) is an issue. You may also be dealing with an abx intolerance.

Oh my gosh, that must be a horrible flare! DD was unable to properly set an analogue clock or tell time using one until last year, several months after she ended abx treatment in April. This school year has been better. She is actually able to grasp geometry now and has no trouble calculating areas of parallelograms and triangles. She used to have HUGE trouble with spatial ability.

Our PANS daughter also suffered from multiple chronic infections. Her first motor ticcing episodes were triggered by the MMR vaccine, undiagnosed insect bite and strep at the age of 7. Her decline was not sudden however, and did take about a month to fully develop.

Krill oil is supposed to be more bioavailable. Unfortunately I have found out that, after increasing fish oil recently from 3x weekly cod liver oil to a 1x daily fish oil, that it makes DD's motor tics worse!

Buhner's take on this is that these infections have always been present, and that if a person's immune system is functioning adequately the infections will remain benign. It is when the immune system is compromised in some way that the infections can come to the forefront. Many of these bacteria can be readily passed between members of families or people who come into close contact or exchange bodily fluid. Borrelia is a spirochete, similar to syphilus and can be passed to partners and through milk from an infected mother. He says that these bacteria act parasitically, producing the cytokine cascades they do in order to destroy tissue and release the nutrients they require. That the symptoms caused by infection are either bacterial endotoxins produced by die-off or the nutritional deficiencies that the infections produce. He believes that by addressing the various cytokine cascades with the proper antibacterial/anti-inflammatory herbs will decrease tissue damage thereby decreasing pain, while also making nutrients less available to the parasites. Immune systems can be compromised in many ways. Metals used as adjuvents and preservatives in vaccinations. When I was growing up I had 8. Children are now routinely receiving >40. Pesticides and GMOs target not only the guts of insect pests, but also similar metabolic systems in our own probiotic gut bacteria. Good gut bacteria are reduced in number, gut pathogens are allowed to grow and the immune system (a large part of which resides in the gut), and the proper functioning of our gut bacteria is destroyed. Nutritional deficiencies are rampant. Grains to the extent we are told to eat them these days, we never available to our ancestors. They ate omega 3 replete fats from grazed livestock, we eat those fed with GMO high inflammatory omega 6 corn and soy beans. Most people only eat a couple of servings of vegetables a day. Terry Wahls is a medical doctor who cured herself from many of the symptoms of MS, which by some is believed to be an autoimmune condition, with proper organic ancestral diet. https://www.facebook.com/Dr.Terry.Wahls Others have recovered from autoimmune symptoms addressing the issue of pathogenic gut bacteria and small intestine bacteria/fungus overgrowth. http://drbganimalpharm.blogspot.ca/

If allopathic medicine has failed, I would suggest taking things into your own hands; reading Buhners books: Herbal Antivirals Herbal Antibiotics Healing Lyme Coinfections: Bartonella and Mycoplasma and perhaps consulting with his associate (Julie McIntyre - PlanetThrive). You seem educated enough to come up with a protocol that will help clear the infections you have tested positive for. With help from Buhner's books and input from his associate, this should be entirely doable for you. That is what I did because our LLMD was not versed in herbal medicine. She was great with abx, though. After reading Buhner's books, I made a list of herbals that would address bartonella, lyme and perhaps babesia. I ran them past McIntyre and she OKed the whole thing (and suggested a couple more things besides). Many of the herbals he recommends cover not just a single strain of bacteria, but many, with coverage for virals/protozoa as well. His protocols are synergistic. They address immune supression and multiple infections at the same time. They contain efflux pump inhibitors which result in an inability of the bacteria to develop resistance. Here is another example of a good synergistic protocol that has been used by several on a different lyme/morgellans forum to resolve morgellons: http://archive.feedblitz.com/426882/~4641978#0 Several of these herbs are used in Buhner's protocols as well. The books are well worth the read.

Just found an article that perhaps explains the reasoning behind the use of lemon juice (citric acid) for detox: http://www.ncbi.nlm.nih.gov/pubmed/24433072 The administration of citric acid (1-2 g/kg) attenuated LPS-induced elevations in brain MDA, nitrite, TNF-α, GPx, and PON1 activity. In the liver, nitrite was decreased by 1 g/kg citric acid. GPx activity was increased, while PON1 activity was decreased by citric acid. The LPS-induced liver injury, DNA fragmentation, serum transaminase elevations, caspase-3, and inducible nitric oxide synthase expression were attenuated by 1-2 g/kg citric acid....Thus in this model of systemic inflammation, citric acid (1-2 g/kg) decreased brain lipid peroxidation and inflammation, liver damage, and DNA fragmentation.

Thanks. I second sss. Horrific!

Probiotics at least 2 hours after antibiotic.

Unfortunately this doesn't mean they are pesticide free. They are now using non-GMO corn starch for a binder and non-GMO sugar. The oats were never GMO and are still treated conventionally with pesticide. Non-GMO doesn't mean organic.

sf_mom - Did you have as much luck with nebulized hydrogen peroxide as you did with oxone insufflation? Wonderful alternative care suggestions on the site you suggested. Thank you. http://healyourselfathome.com/HOW/THERAPIES/H2O2/H2O2_MAIN.aspx

Fish oil - Tourette Syndrome and Tics http://latitudes.org/forums/index.php?showtopic=17427 "It is related to dopamine/genetics/ liver if I recall correctly Someone once posted a research article here explaining it" I haven't found the article, but will post when I do.

Well, because of all the mention of omega 3, which I usually give as 3 doses weekly of cod liver oil, I thought I would add some krill oil which is supposed to be less contaminated and more bioavailable. We started on Monday morning. DD complained of ticcing Monday during school, although I didn't notice it much by the time she had gotten home. I asked how her ticcing was in the afternoon and she said "fine". Yesterday I picked her up from school for an appointment at 10:00 am and she was ticcing after 1 krill oil capsule with her morning supplements. Again by the afternoon it had resolved. No krill oil this morning so we will see how her ticcing is today. I checked the package and it doesn't record ALA as being one of the ingredients. This was disconcerting because until the yeast infection a couple of weeks ago (which we now have a handle on with probiotics and herbs) she hadn't ticced since last April when abx were discontinued. I couldn't figure out why she was still reporting ticcing. Perhaps this is the answer.

There is a lot of information on this blog: http://drbganimalpharm.blogspot.ca/ about recovering the gut using resistant starch, soluble fiber and various probiotics. The idea seems to be "weed" using antimicrobial herbals, "seed" using SBOs and "feed" using resistant starch/soluble fiber (psyllium) and high ORAC foods. I know your daughter has had trouble with some probiotics so be careful with them. The SBOs (soil based organisms) that are mentioned in the blog are bacteria derived from soil, that not so long ago, most of us would have been exposed to daily. SBOs are generally cystic forms that colonize the gut, just like C. diff does, but are supposed to be good symbiotic species (unlike C. diff). There have been a couple of posts on recovery of autoimmune disease posted here, but no hard studies done. Elsewhere I have seen concern about introducing any microbe in cyst form into the gut for fear that there could be trouble erradicating it if you needed to do so. You would have to make an informed decision before jumping into this. We have started these protocols, but I have been using the SBOs only on myself. I have been using Align and Culturelle with DD.

Are you talking about alpha lipoic acid or alpha linoleic acid or alpha linolenic acid? Alpha lipoic acid can mobilize mercury in the body and if not chelated and removed properly can cause mercury redistribution, especially in the brain. The Cutler protocol uses alpha lipoic acid with chelators to decrease metal toxicity. http://recoveringnicholas.com/2009/04/29/andy-cutlers-chelation-protocol/ linolenic acid is a metabolite of linolenic acid, and arachodonic acid can be a metabolite of both. Arachodonic acid can be inflammatory. http://en.wikipedia.org/wiki/Linoleic_acid.