rowingmom

Herxing can also involve the development of new symptoms. DD13 displayed your son's symptoms before treatment, as well as symptoms of low frustration tolerance and raging. Although her rages were mostly directed toward herself she would sometimes lash out at others. Threats of harming others or harming herself happened more than once. Your son's new symptom seems to be on that spectrum of rage/frustration common in people with bartonella, which would make me think that your son is experiencing die-off of that specific bacteria. Rifampin is commonly used to treat bartonella infection. If you find that herxing is becoming unbearable, please consult your doctor about decreasing dosages for a while. Your son's body needs to be able to process the high levels of endotoxins being produced by antibiotic-induced lysis. Try to increase detoxification protocols. According to Stephen Buhner it is these bacteria-specific endotoxins which initiate the inflammatory cascades specific for each infection. http://textbookofbacteriology.net/endotoxin.html http://www.biostrategics.com/kpmgendo.pdf http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf Often the lymph and methylation (detoxification) systems become backed up because of the increased amount of material they are being forced to deal with. If your son has any MTHFR deletions his methylation system will not be working at par and he may experience relatively more die-off symptoms. If antibiotic dosage is decreased for a while the detox systems will be able to catch up. Hang in there. A couple of suggestions: Add lemon juice and stevia to water a couple of times daily and have your son drink this "lemon aid". Increase magnesium supplementation (we use mag citrate powder 300mg BID (2x daily) am and before bed. Try Epsom salt baths several times a week. If your son doesn't have problems with sulfate (CBS mutation) they may be helpful.

Done. Thank you for your interest wembles.

Milk thistle is in the same family as ragweed. Apparently if you are allergic to ragweed you may have trouble with supplementing milk thistle. This is not the case for me however. I have significant ragweed allergies but am fine with milk thistle.

Your doctor should not be using rifampin monotherapy; doing so will lead quickly to bacterial resistance. It needs to be taken with another antibiotic, in our case biaxin - because DD13 is allergic to bactrim which is often used in combination with rifampin in the treatment of bartonella. http://en.wikipedia.org/wiki/Rifampicin In my opinion your DS is being undertreated and will continue to manifest psych symptoms until the infections are resolved. Rifampin does not treat babesia.

DD13's stomach pain was all from bartonella. Hers was not constant either, but every couple of days she would be doubled over for several minutes with pain. She also had intermittent (once every 2 weeks or so) IBS symptoms, especially diarrhea, that I could never pin on any specific food she had eaten. Both of these symptoms cleared up immediately (within 1 week) with bartonella abx treatment and have never returned. She didn't even have stomach issues on multiple abx - but she was taking hefty doses of probiotics at that time as well. DD did have a bit of ankle joint pain, but not much. Most of her pain was in her long bones (shins and forearms) and skull. Funny about your DS's and my DD's coincidental ticcing. Hers started resolving a couple of months after I discontinued the detox herbs (with licorice), but remained fairly constant at a 2/10 level until January when they suddenly disappeared. This did seem to coincide with the condensation on the windows completely freezing. We changed nothing in the Buhner bart/babs herbal protocol. This has me wondering about mold. It's finally thawing here, so we will see. Nice your LLMD will allow herbs without definitive positive test results. If we had not trialled the babesia herbs I would have never known that DD was dealing with a babesia of some sort. Her tests for both microti and duncani were negative.

It certainly doesn't seem like the typical bartonella/lyme frustration/rage reaction. For DD13 this was ongoing before treatment; you could observe it building, and knew what was coming. There was no calmness about it. And it just wasn't a scream; it was a whole spectrum of behaviours - hitting, stamping, etc., with the outburst always directed at someone or something; often herself. You're right about tics happening frequently too. I have never seen a tic that only happens a couple of times a week. But there seems to be that component of "having to do" the tic before the feeling (tingling, tickling, buzzing) subsides. You could ask him if he is having premonitory sensations, although 5 is a little young perhaps to understand just what he is feeling. Good suggestion by jan251. Screaming would definitely result in increased air intake, although for DD her symptoms were dry cough and sighing. I suppose you could ask him if sighing helps or lessens the feeling of having to scream. I have been wondering how your son was faring. Glad to hear he is free of most of his symptoms.

My husband wasn't on board either - through the whole 2 years of abx treatment. Do what you have to do. Your children are important.

We have no genetic predispositions to TS in our family that I have ever observed or heard of. I have seen some discussion on the metal adjuvants in vaccinations causing an increased incidence of motor ticcing and neurodevelopmental disorders in children. I would think that would be a more likely cause than a genetic predisposition in her case. http://www.greenmedinfo.com/toxic-ingredient/vaccine-adjuvants

Our daughter's tics seemed to be associated with toxin buildup, especially bartonella endotoxins, but she is somewhat sensitive to mold as well. Her PANS symptoms were caused by a bartonella infection (Igenex lyme WB came back with a couple of IND lyme-specific bands), and with treatment they resolved (after a fair bit of herxing while addressing the bart infection). Her bartonella pain symptoms took longer to resolve because of an underlying, asymptomatic babesia infection for which she had tested negative through Igenex. Treatment for babesia resolved the remaining bartonella symptoms. She is continuing on low doses of Buhner's bartonella and babesia herbal protocols and is doing extremely well. She has a little residual ticcing (a mouth tic level 1-2/10), which is a great improvement from the motor/vocal levels of 7-8 that she experienced before and during treatment which caused problems with both her ability to read and to communicate.

You treated bartonella right? Unexplained anger sounds like bart. Treating bart and babesia got rid of DD13's defiance, OCD (though it was not at a high level to begin with), ADHD and Asperger's tendencies.

As this seemed the place to do it, I am posting a link to "200 evidence based reasons not to vaccinate" from GreenMedInfo. "...over 300 pages of study abstracts culled directly from the National Library of Medicine's pubmed.gov bibliographic database on the wide-ranging adverse health effects linked to vaccines in today's schedule (over 200 distinct adverse effects, including death), as well as numerous studies related to vaccine contamination, and vaccine failure in highly vaccine compliant populations." http://www.greenmedinfo.com/blog/200-evidence-based-reasons-not-vaccinate-free-research-pdf-download http://www.greenmedinfo.com/sites/default/files/gpub_58635_anti_therapeutic_action_vaccination_all.pdf

You can be mad, but it won't help. You will not change the current state of affairs in mainstream medicine with your anger; what is, is. You need to save your energy and focus it towards healing your son. Perhaps what you learn and share with others will be important. If your son has positive or IND lyme-specific bands, he has been exposed to the infection. Lyme doesn't travel on it's own, coinfections are frequently involved. I am glad you have a doctor who is open to the possibility of tick borne infections causing PANS reactions. These infections are very immune suppressive and need to be addressed. Our daughter's PANS was caused by bartonella. Treatment, first with abx, and now with antimicrobial herbs, has brought her to remission.

Why go high on anything? Your daughter has bartonella/lyme. Have you tried low doses of antimicrobial/anti-inflammatory herbs for her infections? Herbs are not as potent as antibiotics, and you can dose them carefully to avoid too much herxing. Our daughter is now asymptomatic for the bartonella/lyme/PANS symptoms she once had; and has been so for more than a year now. She has had the flu (and even a fever!) and a couple other viruses with no relapse. She reached remission with the addition of babesia herbs to Buhner's bartonella protocol. We had no idea babesia was involved because she had tested negative for both strains and showed no babesia symptoms.

Childhood vaccinations, flu vaccine, contamination of food especially seafood. The metal adjuvants in vaccinations are different from most in that they are engineered to remain in the body, increasing intensity and length of time of the antibody response.

Thank you surfmom for this advice. There are plenty of newer faces on the forum these days and an overview from a mother who has been through it all is invaluable. DD's reactivity to her infections has changed my life. I am not the same person I was before we started this journey. I have had to be stronger than I ever thought I could be, have had to stand up against medical authority, spouse and family because I knew in my heart that they were wrong about the reasons for her behaviours. Our treatment path has diverged from yours, but DD13 has also found healing. It seems like we all need to find our own way; that not one of our children has an illness with the same underlying cause (infections, genetic variations, autoimmune responses) and that each child requires individualized treatment that can only be established through trial and error. Thanks for the update.

An initial worsening of symptoms can be indicative of gram negative bacterial infection. As bacteria lyse and die they release more of the endotoxins responsible for pain and inflammation. This is called a herxheimer reaction and is a common response to treatment of lyme and bartonella.

There are other herbs that can be used to keep babesia in check while treating bart. Low doses of CSA have worked for us.

We haven't used artemisinin, but because it is specific for protozoan infections I will be interested in your outcomes. Buhner says only to use artemesia for short term treatment, no more than 30 days at a time. He says that if it's going to work you will experience improvement relatively quickly. And that if you haven't seen improvement after using it for 30 days, it's probably not going to work for your specific infection. Hopkinton is apparently liposomal, so probably works at lower doses than you have been using. Start slow and work up. Tell us how it goes.

DD didn't have an nausea or vomiting associated with malarone, just an immediate improvement (within 8 hours) in cognitive/executive function and decrease in ADHD. I didn't treat it any differently from the other abx and dosed it away from probiotics. Frankly I have seen more improvement with CSA (WoodLandEssence combination tincture of cryptolepis, sida acuta, alchornea) than I did with malarone.

I would recommend a metal binder. As metals are released from where they have been sequestered, they will enter circulation and hopefully be shunted to the intestine. Taking a metal binder (we use food grade diatomaceous earth) will ensure that they are not reabsorbed again through the intestinal lining. Others use bentonite or zeolite.

Our LLMD prescribed malarone which, when looking back at my charts, produced significant reduction in ADHD and improvement in cognitive/executive ability. It, however did nothing to improve the remaining bartonella pain symptoms that she was still experiencing. Because DD didn't herx with malarone, we had no indication that babesia was involved, other than observing the cognitive improvements when on the drug.

DD13 was negative for both duncani and microti through Igenex and was asymptomatic for babesia throughout bartonella treatment - all symptoms were indicative of bartonella, but the LLMD couldn't get her past 80% improvement with bart abx. It wasn't until I trialled some of the herbs from Buhner's babesia protocol, specifically CSA (combo tincture of cryptolepis, sida acuta, alchornea) that she developed classic babesia symptoms from the herx reaction, and was then clinically diagnosed with babesia by our LLMD. Her herx symptoms included chest pressure, dry cough (pretty continuous - I initially thought it was a tic), air hunger and plenty of sighing. She also experienced pain in the large muscles of her legs (especially the thighs) while walking. After treating babesia the rest of her bartonella and PANS symptoms pretty much resolved. She still has some residual (1-2/10) motor ticcing, mostly mouth movements, which may be associated with the ortho work she is having done - extraction, wires, etc. Over the course of the year she has had the flu, the stomach flu and a couple of fevers, with no flare of either PANS symptoms or bart/babs symptoms. Hopefully babesia treatment will bring your daughter some resolution as well.

DD13 uses Protocol OrthoFlora Yeast Support. It was recommended by our LLMD, and we have used it pretty much since day 1. She takes 1 per day with 8am supplements. We use lots of probiotics as well. Either Culturelle or Align once daily at 11am (alternating days) and 1 of either RenewLife Ultimate Flora, PrescriptAssist or AOR Probiotic-3, also alternating days at 5pm. Afternoon antimicrobial supplements are taken at 3pm, dinner at 6pm, evening antimicrobials at 8pm.

The Capsule Machine - that's the one I mess up.

Ha - I knew it. On my first go round I only had 5 good capsules out of 25. What a mess! No wonder I am forced to make tea. It's hard to go wrong boiling water. I am a fisheries biologist. Maybe that's where the water thing comes from.