rowingmom

I purchase our tinctures from WoodLandEssence (sida, red root, bidens, CSA, Japanese knotweed) and source our powdered herbs (houttuynia, cordyceps, Japanese knotweed) from 1stChineseHerbs. Other herbal tinctures I use (ginger, hawthorne, milk thistle, curcumin) I source from OrangeNaturals, a Canadian company. I infuse the powdered herbs instead of encapsulating them. Infusing them through different temperatures extracts more constituents than simply using an acid extraction (stomach acid). Then when the herb is mixed and suspended in the tea before drinking, further acid extraction is allowed in the stomach. It's just easier to slug down a shot of tea with a pomegranate juice chaser than to take lots of capsules. I started the bartonella protocol on my own using the mycoplasma/bartonella coinfections book. I had read up on the subject a couple of months before DD was weaned from abx. The LLMD said I would be OK to start with herbs - so I did! I contacted Julie after several months and she said we were doing fine. She gave me a couple more suggestions (mostly for detox) that I initiated. Then after trialing CSA which produced a babesia herx (and a new clinical diagnosis of babesia-like-organism from the LLMD), I contacted Julie again for input on the babesia protocol which is not in print yet. I didn't feel the website contained enough information for me to go in. Please be careful of where you source your herbs. They may be organic, but if they are grown in a highly polluted area you may still be getting unwanted toxins. For this reason I stick with Buhner's recommendations. Others include: Elk Mountain Herbs 1stChineseHerbs Healing Spirits Herb Farm Horizon Herbs Mountain Rose Herbs Pacific Botanicals Sage Woman Herbs WoodLand Essence Zack Woods Herb Farm Desert Tortoise Botanicals When starting methylated vitamins, go slow. If you cause a backup in one of the pathways you will be in a mess. Our LLMD wanted DD to take methylB12 shots with relatively huge amounts of B12 and folate. I said no way - we started orally at low dose and didn't have a noticeable problem. Just be aware that overmethylation can be as damaging as undermethylation, which is why we now only supplement every other day. @Mayzoo - you must be a pharmacist if you can get those capsule machine thingy's to work!

We didn't do 23andme, but our testing through LabCorp showed DD to be heterozygous for A1298C MTHFR. She has no trouble with sulphate so I am assuming no CBS mutations. We supplement low doses of methylated B's (Swanson Ultra Activated B complex) and sublingual methyl B12 every other day and stay away from artificially fortified food. Following a Terry Wahls/PerfectHealthDiet (mainly organic); I hope she is getting everything else she needs from that. Funny Mayzoo - Buhner's Herbal Antibiotics (2nd edition) and Herbal Antivirals are the only books for which I have both the real and digital versions of as well. That way people can't tell what I'm reading at the beach! I tell them it's Fifty Shades.... LLM has written a huge amount of information in the archives about methylation and 23andme. She is/was our resident methylation guru.

We had very good results with Buhner's bartonella protocol, but have not treated mycoplasma other than initiating Buhner's diet suggestions. With the addition of herbs for babesia, DD13 has been sitting at 99% for a year now. No flares, no regression, just a great, healthy, energetic, bright kid. I would suggest that anyone planning on consulting with Julie purchase and read the book(s) beforehand. The Herbal Antibiotics for resistant bacterial infections (edition 2) covers the herbs used in the babesia protocol. The new Ehrlichia, anaplasma, babesia coinfection book is due out later this spring. I can't wait to get my hands on it. Julie is getting pretty busy these days. On his facebook page Buhner does recommend others that can be consulted for his protocols: 2) Tommy Priester in Lincoln, MA (tommy@hmithpy.com); Gordon Medical Associates in Santa Rosa, CA ((707) 575-5180); and Tim Scott in Brattleboro, VT (Toll free: 877.591.1874 In VT: 802.246.1090)

Our 13 year old Dear Daughter (DD13) regressed with her initial MMR as well. We found her PANS trigger to be lyme/bartonella/babesia infection, which our LLMD (Lyme Literate Medical Doctor) assumed to be congenital.

I would consider adding something for babesia to the mix. DD was totally asymptomatic for it and tested negative for both duncani and microti, but I saw total resolution of her lingering bart symptoms when I added the combo tincture CSA (which Buhner uses for babesia/protozon infections). This was after 2 years of combo abx for bart and another 8 months of bart herbs, with improvement lingering at 80%.

The table cumulatively lists all "spontaneous reports" of serious reactions from the clinical trials from 2000 to 2011. These incidents are tabulated from pages 591 - 645. These are not the results of scientific testing - which doesn't occur anyway. All we have are reports.

GlaxoSmithKline Confidential to Regulatory Authorities Biological Clinical Safety and Pharmacovigilance Belgium Combined DTaP, HepB, Polio, HiB Infanrix Hexa Report Dec 2011 The list of nervous system disorders caused by the vaccine during the trial period starts in the table listing on page 625. Autism is specifically recorded on page 626. http://autismoevaccini.files.wordpress.com/2012/12/vaccin-dc3a9cc3a8s.pdf

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.

At least one parent here has found PANS exacerbations with mycoplasma infection. There were underlying difficulties with lyme and coinfections as well. Check hopeny's archived posts for more information.

I completely agree with mama2alex's comment. It will be hard at this point to even imagine the lyme and the coinfections (babesia, bartonella, EBV, anaplasmosis, ehrlichia, RMSF) could possibly be responsible for the symptoms you are seeing in your child. After all, according to the CDC (and most likely your doctor), it is rare and easily treated. Perhaps the easily treated part applies to people with properly functioning immune systems, but for whatever reason (environmental toxins, pesticides, metal adjuvants in vaccinations etc), our children don't seem to fall into that category. PANS caused by bartonella and babesia infections were the cause of our DD13's symptoms as well. If you don't find resolution treating using PANDAS protocols, please don't dismiss the possibility of other infections.

Low 1/4 dosages of herbs from Buhner's full bartonella and babesia protocols, excluding bidens and l-arginine. DD was never treated for lyme.

I also turn the electric circuits to DD's bedroom (and my own) off at night. This seems to help with night waking .

1000 mg BID. I would stay away from the licorice. Spacestar and I have both seen increased ticcing with this herb as well.

This happened to DD about 1/2 way through bart abx treatment. The LLMD suggested GSE drops on her toothbrush to counteract the yellow film developing on her teeth, no doubt caused by upset gut/oral microflora. She immediately reacted with increased ticcing the day after we started this protocol. And even with my Excel chart I didn't figure it out for about 1 week. So I just ramped from 1 drop to about 3 drops 2x daily. By the time I twigged on what was happening DD was an absolute mess. She couldn't read - her eyes were rolling in her head, and she couldn't speak more than about 3 words without vocals interrupting (and she had an oral presentation at school that week). GSE also brought out many of DD's previously resolved PANS symptoms: emotional lability, social regression, urinary frequency, diminished motor ability/handwriting. It was horrible - it was all coming back. Her teacher called me crying she felt so bad for DD and the obvious struggle she was having. I assumed yeast die-off and so did the LLMD. Buhner's associate, Julie, suggested that the chemical composition of GSE would be similar to that of grapefruit juice and may therefore act as an inhibitor of the P450 CYP3A4 enzyme essential for detoxification in the liver. Because I associate DD's ticcing with toxin buildup, this made sense to me. Of course the toxins may have been produced by yeast also. Larger doses of liposomal curcumin (we use the Meriva version) resolved much of the problem within a week or so. The teacher noticed this as well and suggested that I was a miracle worker. I have never trialled GSE with DD again.

The amount of magnesium you are using is probably insufficient. I would try at least 300 mg 2x daily instead of 100 mg. If taken right before bed it puts us out like a light. I even have my 80 yo mother using it at bedtime. She was having insomnia problems and the doctor wanted to give her a prescription but she tried magnesium citrate powder first (mix in water, it's kind of fizzy) and it worked perfectly. This is what we use: http://www.naturalfactors.com/caen/products/detail/4862/magnesium-citrate-300-mg Magnesium is essential for detox: http://www.westonaprice.org/health-topics/abcs-of-nutrition/magnificent-magnesium/ http://gotmag.org/a-magnesium-primer-part-3/

DD was 9 when she started treatment for lyme/bart. She knew exactly what was going on - that we were getting her help for an infection, not a "disease", and that most infections could be treated properly with the antibiotics we were giving her. We were fortunate (or perhaps not) that her infection had progressed to a point where she was having physical as well as mental/psychological difficulties, so I just clung to the promise that our LLMD had given me; that treatment for the infection causing the physical symptoms would alleviate the psych ones as well, and it did. One thing I never told her was that I was unsure of the outcome. I told her that her doctor would find the answer, and that neither the doctor or I would stop before she was better. She realizes now that her mental problems were the result of her infection - hallucinations, inability to properly socialize with peers, inability to concentrate, and that they were just as real as the physical ones - light sensitivity, bone pain, headache. She has learned something that few medical doctors or psychiatrists understand. That psychological problems can be caused by infection.

500 mg BID

You can go as high as bowel tolerance will allow (any higher will cause diarrhea). DD13 gets 300 mg in the am before school and 300 mg at night before bed. Other forms of magnesium may not have bowel tolerance issues, ie magnesium glycinate, magnesium malate or magnesium taurate, but I'm not sure as we have never used higher doses of any of them. Our LLMD had DD on mag taurate (in addition to taurine) for a long time, but I found it cheaper to use mag citrate and taurine. She said that taurine is essential for children/people with neurological problems. http://www.lef.org/magazine/2013/6/The-Forgotten-Longevity-Benefits-of-Taurine/Page-01Taurine: One of the Most Essential Substances in the Body! It increases the action of insulin, improving glucose tolerance, and acting as an antioxidant.67 It is vital for the proper function of the minerals potassium, calcium, magnesium, and sodium.68 Taurine regulates heart rhythm, cardiac contraction, blood pressure, and platelet aggregation,69,70 and regulates the excitability of neurons.69 It detoxifies liver cells of various toxins.71-74 It helps form bile acids and maintains cell membrane stability.9 It reduces the synthesis of lipids and cholesterol that are associated with atherosclerosis.75 Magnesium chloride can also be purchased as a liquid/gel that is applied topically, negating bowel tolerance difficulties.

Agreed, and why not. Metals have to act as intercellular antenna for concentrating signals. Both DD and myself have noticed a big decrease in electrosensitivity by detoxing metals with cilantro/diatomaceous earth daily. I can actually go into a mall or coffee shop without developing palpitations now, and we are much more successful at sleeping in wireless areas (ie hotels with free wifi) than we used to be. DD used to be very electrosensitive, with significant symptoms of fatigue, headache, bone pain and ticcing. She used to hate going shopping because it always meant suffering. Now she's good to go!

If you live in an area of California where the soil is dry, perhaps ground current isn't an issue for you, and you won't get conduction from the ground back through the device. It sounds like the grounding pads are working for you - that's great! The ground where we live contains a fair amount of clay (which retains moisture) and we are snow covered for about 5 months of the year. I will try the discharge method first, but at this time of year when it is dry in the house, we pretty much discharge every time we touch a door knob.

Please don't discount infection as the cause of your physical and neurological symptoms. Our daughter was a mess when I finally broke down and found a LLMD. She has recovered. I imagine she would still be suffering at age 23 if we hadn't found the culprit - lyme, bartonella and babesia.

Thanks for the link sfmom, I have been pondering this for a while. I was chasing it down this morning, but found this instead: http://oneradionetwork.com/health/dave-stetzer-the-difference-between-grounding-the-body-and-discharging-energy-they-are-not-the-same-december-17-2013/ Apparently these devices work differently in different climates, and depending on the amount of ground current in your area. Earthing devices used in areas with damp soil will conduct current back through the device, which I guess would not be helpful.

You will need to look at MTHFR issues as well. I really don't think our kids need to test positive for any of these mutations to suffer the ill effects of improper methylation and therefore detox issues. If your son in is struggling with infections, his methylation pathways, detox ability and mitochondrial function (energy production) will be impacted. "At the beginning of this lyme stuff, last winter and even into spring, I was wishful thinking and naive, that my son would be the one with no co-infections, and who didn't have "layers" to an onion to peel off". I am pretty sure that every one of the parents here who have come, either earlier or later, to the conclusion that lyme/coinfections are involved in their children's physical and neurological problems, have wished this in their hearts as well. I did. But when you see that the present treatment isn't providing the healing you want, when you don't think you are seeing your child's real potential, you simply keep searching. As a parent you have to. And you will.

I would say that if you are not seeing any pain/psych symptoms indicating lyme/bartonella/babesia, that you may be dealing with yeast/mold/emfs. But then again, DD's motor ticcing began years before her pain symptoms. For us it was bartonella die-off toxins that caused most of her ticcing issues, especially the complex motor tics. Die-off can be produced by the immune system, which is what produces many of the presenting symptoms in the first place, and is not necessarily dependent on antimicrobial treatment. Symptoms will re-emerge pretty quickly if the proper infection hasn't been addressed.

I have to agree with several posts here. Bartonella is notorious for causing behavioural problems, especially raging. Clindamycin alone will not completely address bartonella infection. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf Fortunately for us, DD13's rages were never directed at us, but it is still upsetting to see your child attacking herself and her surroundings. Her rages subsided with treatment for bartonella. The addition of herbs for babesia (which would also address any other unrecognized protozoan infections) improved her outlook as well. Happy, helpful, patient, rarely frustrated, diligent worker at school. If you had told me 3 years ago that bacterial infections were so utterly responsible for DD's psychiatric issues I would never have believed.