rowingmom

For how long has she been taking GSE? That was the only supplement that DD13 could not tolerate. Even the 2 drops 2x daily that the LLMD recommended be put on her toothbrush to address yellowing teeth because of plaque (improper oral bacteria) buildup. After 5 days or so her ticcing became horrible, she redeveloped night time enuresis and obvious behavioural regression - you are right about the 3 year old thing. It was that bad and she was 11 too. I assumed yeast die-off and so did the LLMD however she had never acted like that with diflucan. In talking to Julie McIntyre, she thought that as with the grapefruit juice/statins interaction, the GSE was inhibiting the P450 detox pathway producing toxin build up. This made sense to me because I have always associated DD's ticcing with toxins. After discontinuing it took a couple of weeks of 3x daily Meriva curcumin, double doses of Japanese knotweed and lots of other detoxing (lemon juice, Epsom salt baths) to relieve those symptoms. DD was actually ticcing so badly that she could neither speak or read with the combination of vocals and head jerking/eye rolling. I remember her grade 6 teacher calling me in tears because she felt so sorry for DD. Sorry I can't be of more help, but the discontinuation of GSE made a huge difference in behavioural regression symptoms as well.

DD didn't herx on Japanese knotweed (unlike all the other antimicrobial herbs), higher doses simply worked better to quell inflammation. But I would always suggest starting at low doses for anything new, especially if your child is sensitive. Buhner also recommends Kudzu for brain inflammation.

DD (then 10) originally did well on PenVK for strep, all symptoms resolved. But on the second round they started coming back. We subsequently found out that her underlying infection (bartonella) was supressing her immune response and allowing other infections full rein. PenVK wasn't sufficient to treat bartonella. Treatment of bartonella/babesia (both tick-borne infections) has brought her to excellent recovery.

So wonderful to hear of your DS's improvement and how right you are! Many LLMDs are starting to realize that the infections are not the basic problem. These infections are everywhere and most people have the immune capacity to fight them off. But lately with the increasing number of required vaccinations and the amount of pesticides now sprayed on food, it's small wonder our little ones' bodies can't cope. The microbe is nothing; the terrain is everything. Improving the body's terrain is as important as killing bacteria.

DD13 was treated with various abx for 2 years for bartonella. She weaned from abx in Apr 2013 at 80% improvement. At that point I introduced Buhner's full bartonella protocol (minus l-arginine) which kept her at 80%. Our LLMD didn't specifically treat her IND lyme, but WB bands increased during treatment - the LLMD says that is because her immune system was starting to properly recognize the infection. Bartonella treatment resolved rage issues as well as Tourette's, ADHD and SPD. When I started DD on herbs I started treating myself also with the same protocol/same dosages and found that I was herxing along with her. Our LLMD had previously clinically diagnosed me with the same infections so I thought I would give it a try. My symptoms improved significantly and DD maintained her 80% improvement for 8 months. At that point I decided to switch up a little and added CSA (for babesia - for which DD was asymptomatic and tested negatively through Igenex). She immediately responded with babesia herx symptoms and was then clinically diagnosed with babesia. Treating her asymptomatic, negative-testing babesia brought her to 98% with significant improvement in cognitive/executive function. The addition of a natural chelating protocol suggested by Julie McIntyre (cilantro and binding clay - we use DE) improved her to 99%. If you are going to use Buhner, you need to use the whole protocol starting 1 herb at a time and at VERY LOW DOSAGES. Do not use the dosages recommended in the book, especially if your son is sensitive. We are doing wonderfully now with the FULL bartonella protocol (minus l-arginine which can exacerbate viral infections) with CSA and redroot from the babesia protocol. I have also added in turmeric, ginger, rhodiola, phosphatidylcholine, taurine, zinc, selenium, potassium, low dose astragalus (500mg 3x weekly), probiotics and fermented vegetables. Every one of Buhner's herbs are included in his protocols for a reason. If you start picking and choosing the protocol will not be as effective. If you haven't, please read his two coinfection books; bartonella and mycoplasma, and babesia and anaplasma.

DD13 took biaxin/rifampin (along with other things) for a year during her treatment for bartonella. There were some herx symptoms (bone pain, headache, motor ticcing) as bartonella bacteria were lysed and released endotoxins. If your child, by chance has this infection, she could experience some of these symptoms as well.

If you have never been tested for lyme coinfections, you might want to give that a go first. The antibiotics you mention will not treat either bartonella or babesia (the 2 I am familiar with), especially not as monotherapy. There are others - ehrlichia, anaplasma, mycoplasma, viruses. If underlying infections have not been properly treated, plasmapheresis will not get rid of them as they tend to sequester in bone marrow and spleen. When people think of Lyme they think of Borrelia burgdorferi, but "Lyme" infection almost always includes one or more coinfections. Whether they were acquired along with lyme doesn't matter. The immune suppression caused by Borrelia will allow many different bacteria the chance to proliferate.

One of the problems is the actual term "Lyme" itself. Many people believe that if they test for "Lyme" and the result is negative, that they have investigated the issue and can move on. They don't realize that Lyme disease isn't caused by a single bacteria, but a whole host of possible coinfections (bartonella, the babesias, ehrlichia, anaplasma, RMSF, mycoplasma and viruses) as well. In all of my years on lyme boards I have found not one single instance of someone only infected with lyme (Borrelia burgdorferi). I can spot the Newbies because they are trying to discuss "Lyme" and only "Lyme", ignoring others suggestions that they have proper testing for coinfections. Even the well known LLMD's, Horowitz and Klinghardt say that lyme (Borrelia burgdorferi ) is not the issue in the more serious cases. It's the other coinfections that are causing the significant problems. In my opinion there needs to be a new name given to the multitude of infections that are the true cause of this disease. Singling out one infection and calling the constellation of symptoms by that name "Lyme" is insufficient.

Please don't dissuade others from considering coinfections if they have only ever tested for lyme. These can be stand-alone infections even if lyme is not an issue. Treatment is not similar or even vaguely the same. Babesia is a protozoa and will not respond to the antibiotics given for strep. It needs to be treated with antimalarial drugs or herbs. Bartonella is becoming resistant to many monotherapies and rifampin is often needed. I'm not saying that food sensitivities aren't involved. Our foods, especially conventional sugar, meat/eggs, dairy and grains are highly contaminated with gut/immune system destroying pesticides and is associated with neurological pathologies. It acts like a chelator, attaching to important minerals and rendering them unavailable to the body. http://surgicalneurologyint.com/surgicalint_articles/glyphosate-pathways-to-modern-diseases-iii-manganese-neurological-diseases-and-associated-pathologies/ Manganese (Mn) is an often overlooked but important nutrient, required in small amounts for multiple essential functions in the body. A recent study on cows fed genetically modified Roundup®-Ready feed revealed a severe depletion of serum Mn. Glyphosate, the active ingredient in Roundup®, has also been shown to severely deplete Mn levels in plants. Here, we investigate the impact of Mn on physiology, and its association with gut dysbiosis as well as neuropathologies such as autism, Alzheimer's disease (AD), depression, anxiety syndrome, Parkinson's disease (PD), and prion diseases. Glutamate overexpression in the brain in association with autism, AD, and other neurological diseases can be explained by Mn deficiency. Mn superoxide dismutase protects mitochondria from oxidative damage, and mitochondrial dysfunction is a key feature of autism and Alzheimer’s. Chondroitin sulfate synthesis depends on Mn, and its deficiency leads to osteoporosis and osteomalacia. Lactobacillus, depleted in autism, depend critically on Mn for antioxidant protection. Lactobacillus probiotics can treat anxiety, which is a comorbidity of autism and chronic fatigue syndrome. Reduced gut Lactobacillus leads to overgrowth of the pathogen, Salmonella, which is resistant to glyphosate toxicity, and Mn plays a role here as well. Sperm motility depends on Mn, and this may partially explain increased rates of infertility and birth defects. We further reason that, under conditions of adequate Mn in the diet, glyphosate, through its disruption of bile acid homeostasis, ironically promotes toxic accumulation of Mn in the brainstem, leading to conditions such as PD and prion diseases. We supplement minerals and methylated B vitamins and eat as organically as possible - no wheat, no dairy (except a bit of kefir), no sugar. You are right that diet and supplementation are important, but they may not be the complete answer.

When DD13 was 9 she had an almost complete resolution of symptoms (ticcing, raging, urinary frequency etc. etc.) during an initial 10 days of PenVK for strep. But within 4 days of discontinuing the abx she relapsed completely, sore throat and everything PANDAS. I went to the PCP for another rx, which he wrote but told me not to use it until the culture came back. Being the good compliant mother I am, I immediately started her back on abx and once again her symptoms resolved. But this time only for the first 5 days. After that, and while still on the abx, her symptoms started returning. The culture was negative. So either she was herxing or the PenVK wasn't covering the infections I now know she had. Hard to tell. But that is what sent me on the path of investigating infection. Our ped psychologist suggested PANDAS to me, but then in the second breath she told me that IVIG would not be available to us, and being Canadian (southern Ontario) we had no alternative. My next best option was to consult with the LLMD in Buffalo who immediately told me about PANS, clinically diagnosed DD with bartonella, and we were on our way to recovery.

I agree with dasu. If treating PANDAS is not working, you need to investigate PANS triggers. Bartonella, babesia, and with seizures, ehrlichia. Aggression and raging is often caused by bartonella infection. Please don't give up. Your child will improve when you target the proper infections. Check for methylation defects, which can be caused either by genetic deletion or simply result from the methylation cycles being overwhelmed by toxins (produced either by bacterial die-off or by pesticides/metal adjuvants in vaccinations). Try to eat as organically as possible. Glyphosate acts as both an antibiotic (will kill beneficial gut bacteria which is a significant part of the immune system) and a mineral chelator (will tie up essential minerals found in both plant and animal food, rendering it unavailable for absorption). http://www.mdpi.com/...-4300/15/4/1416 http://articles.merc...th-effects.aspx http://people.csail.mit.edu/seneff/ Be aware than almost all conventional legumes and grains are sprayed with glyphosate (RoundUp) before harvest to help to uniformly dry the plants. If wheat, beans etc. don't say "organic", they are likely sprayed. GMO's get a double whammy. Most GMO's are grown to feed CFAO animals. Glyphosate is stored in their tissues and we eat it when we eat conventionally raised meat. Try for grass fed.

Lyme can not be ruled out if you were testing for antibodies. Both the ELISA and WB do this. If your son's immune system is compromised he will not be producing antibodies in sufficient quantities to register. DD was ELISA negative and both CDC and Igenex WB negative for lyme, if you simply count numbers of bands. She did have 1 IND (indeterminate - weak) lyme specific band (no cross-reactivity was possible), so the LLMD said lyme. As we treated DD actually started producing more reactive WB bands, even though her symptoms were improving. The LLMD said this was because her immune system was beginning to function normally and producing the needed antibodies. Generally, the sicker you are with lyme and coinfections, the less reactive your WB will be. Lyme, bartonella and babesia are all very immune suppressive. DD's predominant infection, and the one that caused most of her PANS symptoms, was bartonella; and now we have found babesia too. You can't rule out either of those 2 infections using a lyme test. They are usually found as coinfections as well as mycoplasma and many viruses because the immune system is not functioning at full capacity), but can be stand alone infections as well. Sorry to say, but the PANDAS doctors seem to stick mostly to treating strep and don't have much experience with arthropod-borne infections. Please keep this in mind as you search for help for your son. Check for methylation defects, which can be caused either by genetic deletion or simply result from the methylation cycles being overwhelmed by toxins (produced either by bacterial die-off or by pesticides/metal adjuvants in vaccinations). I found that DD's ticcing was significantly correlated to toxin load from die-off. Try to eat as organically as possible. Glyphosate acts as both an antibiotic (will kill beneficial gut bacteria which is a significant part of the immune system) and a mineral chelator (will tie up essential minerals found in both plant and animal food, rendering it unavailable for absorption). http://www.mdpi.com/1099-4300/15/4/1416 http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx http://people.csail.mit.edu/seneff/ Be aware than almost all conventional legumes and grains are sprayed with glyphosate (RoundUp) before harvest to help to uniformly dry the plants. If wheat, beans etc. don't say "organic", they are likely sprayed. GMO's get a double whammy. Most GMO's are grown to feed CFAO animals. Glyphosate is stored in their tissues and we eat it when we eat conventionally raised meat. Try for grass fed.

Stephen Buhner recommends Japanese knotweed or kudzu for brain inflammation. We used knotweed thoughout abx treatment, at double dosage sometimes if raging/herxing became too bad. I have actually seen 2 ml of Japanese knotweed tincture (WoodLandEssence) change DD (then 11) from a raging defiant nasty kid into a smiling helpful one within 20 minutes. Amazing stuff.

We have never tested for mercury or metals, but before starting a natural chelation protocol recommended by Julie McIntyre (Buhner's associate), DD13 and myself were quite electrosensitive, which I think is an indication of metal burden. I experienced palpitations, jitteriness and some brain fog, while DD showed increased motor ticcing, headache and fatigue. I wasn't willing to do chelation through our LLMD, however we did start supplementing with organic cilantro tincture (5 drops 3x daily) (Flower Fairy Herbal Healer) and diatomaceous earth (1 tsp 2x daily), which is a more natural long-term chelation. Within 2 weeks we were no longer electrosensitive. Hopefully that means our burden of metals has declined. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654245/ http://naturalsociety.com/6-foods-natural-heavy-metal-chelation/ http://www.drdavidwilliams.com/cilantro-clay-for-detoxification/ The above author suggests pascalite clay, but being concerned with the amount of aluminum it might contain, I opt for Diatomaceous earth for our binder. Then of course I figured that if a little was good then more would be better, so I started dosing at a rate of 10 drops 3x daily, and within a few days DD developed a whopper of a yeast infection (and she doesn't often get those). I have read that the body will allow proliferation of yeast if there is a large release of metals into the intestine. The yeast keeps the metal sequestered there to decrease reabsorption through the intestinal wall. http://www.yeastinfectionadvisor.com/mercurypoisoning.html It was interesting that as soon as I decreased cilantro dosage, the yeast infection cleared up. http://drsircus.com/medicine/essentials-natural-chelation Mercury can also be bound to sulfhydryl groups in garlic or to sulfur in the form of organic sulfur (MSM). We also supplement 1/4 tsp MSM 2x daily.

If you find your daughter negatively testing for strep, please consider conferring with a ILADS LLMD (Lyme Literate Medical Doctor). They understand that lyme and/or coinfections (bartonella, babesia, mycoplasma) can be responsible for PANS reactions. Ours did, and told me that once DD's infections were under control her PANS symptoms would resolve along with the brain inflammation caused by them. They have.

Are you seeing an ILADS recommended LLMD or LLND for your daughter's infection(s)? The reason I ask is because the infection is not called "Lymes". If your doctor is referring to it as such, you should be looking for another. You also need to investigate coinfections because lyme rarely, if ever, travels alone. The presence of coinfections (bartonella, babesia, mycoplasma, ehrlichia etc.) result in a more symptomatic and hard to treat infection. You may treat lyme for years only to discover underlying coinfections. If you haven't tested for them or been clinically diagnosed by a proper LLMD, you can not assume your daughter doesn't have these arthropod borne infections.

Yes.

Yes, you can use the tinctures you mentioned. Also fresh lemon juice in water sweetened with stevia a couple of times a day. Magnesium citrate and vitamin C powders mixed in water as well. Magnesium is an important part of detoxing and can be taken to bowel tolerance. You can also try Epsom salt baths (magnesium sulphate) which are helpful if you child can tolerate sulphate (which is important as well).

A herx response to an antibiotic indicates bacterial infection. Tick borne infections produce immune dysregulation and suppression, resulting in poor antibody response to other infections (viral and bacterial) and allowing opportunistic infections of all sort to flourish. This suppression also results in the negative antibody titers often observed in tests. I agree with sf_mom. Keep looking for infection.

Good. I would get the IEP underway. DD13 has had one since her various diagnoses (which were actually PANS related, but the ped psych and school didn't know that), but for the past 2 years the school hasn't had to use it and she has been unaccommodated. We kept it in place though, in case of relapse. Her accommodations were for quantity, not quality as well, with additional time allowed for assignments and testing. If the teacher was confident that she understood the concepts that was sufficient. She wore ear plugs and was seated behind a screen for class work/testing to help with noise/visual distractions. For math, I found it helpful to get the next day's work from the teacher and go over it with DD the night before, sitting beside her, helping and refocusing her attention. By doing this, even if she was distracted from listening during the lesson, she would still understand the concepts and be able to complete some of the classroom work the next day. This did wonders for her ego; that she was able to answer the questions along with the other children. DD has never been incapable of doing the work, she was just incapable of concentration while her brain was inflammed. I'm not sure if the IEP will travel with her to high school this fall. She hasn't relapsed since treating for babesia and her bartonella remains under control. Every summer we work with the grade-appropriate MathSmart workbooks, a couple of pages a day just to keep current and not lose everything from the previous school year. They are pretty fun; not heavy duty like the workbooks used in class.

DD13 lost obvious speech and motor ability with her first MMR (15 months), likely associated either with an exacerbation of what the LLMD says was the congenital lyme/bart infections that she was carrying or an improper immune response to the vaccine caused by the infections. Oral apraxia is a loss of muscle control in the face and tongue which coincided perfectly with the loss of her other fine/gross motor abilities. She didn't loose cognitive ability at this time and was still obviously capable of reading at 2 years of age as she was able to point to words on a page when queried. This was all highly frustrating for her as the only way she was now able to communicate was to point at something she wanted and either scream or cry. With pretty intensive speech therapy (Prompt Method) which targeted muscle strength and control in the face/tongue, she regained her speech at age 4. Because of this I was hesitant to vaccine in 2008 when she was 7 years old. I had our doctor draw titers, and even though 2 of them were good (I don't remember which), 1 was low. Unfortunately the three vaccines are not even manufactured separately any more. If you need only one you still have to inject 3. It was 1 month after her second MMR vaccination in 2008 (and also an insect bite with a non-EM rash) that she developed Tourette's. Her ADHD and SPD had been pretty much present since birth. Because of the bite I am unable to say that the second vaccine was the cause of her downswing, but intuitively I feel that it was a major component. I have now taken out vaccine exemptions for both of our children (Canadian), although both were pretty much up to date at ages 10 and 14.

A pioneer. Very unfortunate.

At the time DD13 weaned in 2013 she was taking azithromycin, minocycline, malarone, tindamax and plaquinel. We stopped them one at a time, one per week. So it took 5 weeks. I started introducing the first antimicrobial herb at that point. They were introduced, one at a time with several weeks between introductions. Yes, she and I are both on maintenance dosages of babesia/bartonella herbs, as well as probiotics and immune supporting herbs and will likely continue for at least another couple of years. It's too much fun to be asymptomatic and I am not ready to rock the boat yet.

Our daughter's PANS symptoms were caused by a bartonella infection. Bartonella is described as being one of the lyme coinfections, but can be a stand-alone as well. It is also known as cat-scratch fever. The ticks that transmit lyme/co may be as small as the period at the end of this sentence. A significant number of people do not produce an EM rash upon infection. You can not assume she isn't infected just because you haven't seen a rash. Even if you assume your daughter has never had a tick bite, please realize that many of these bacteria (bartonella, babesia, mycoplasma, ehrlichia, anaplasma, rickettsia), can be transmitted by arthropods other than ticks (deer flies, horse flies, bed bugs, fleas, lice, perhaps mosquitoes) as well as congenitally.

Bartonella/asymptomatic negative testing babesia was our DD13's PANS trigger. After 2 years of multiple combo abx (biaxin, rifampin, plaquinel, azithromycin, minocycline, malarone, tindamax) she improved to 80% (which was actually 100% as far as I was concerned because she had been struggling all of her life with various symptoms). She was weaned to the full Buhner bartonella protocol (at low 1/4 of recommended dosages) in April of 2013 and remained at 80% until Nov of 2013 when on a whim I added herbs from the babesia protocol. Her recovery, especially of cognitive/executive function at that point was dramatic. Within a week her teacher called asking what I had done. She was now capable of complex math that before had been problematic. She was grasping math concepts that her peers couldn't fathom. At that point her remaining bartonella symptoms (motor ticcing, shin pain and headache) started resolving as well. They took a while longer to disappear, but disappear they have. Weaning and switching to herbs was the best thing I have ever done. The herbal protocols seem to be more broadly antimicrobial/antiviral and likely addressed infections we never realized she had. Because of this ongoing probiotic supplementation (supplements, kefir, naturally fermented vegetables) is required. Before the herx from babesia herbs we had no indication that babesia was holding back her recovery from bartonella. If I was now in your shoes I would take her to an ILADS trained/recommended LLMD that is open to using herbs along with abx. I know it seems overwhelming to now be dealing with lyme/co after so many years of PANDAS treatment but 16 is still young. If she is better within 2 years she will have a whole good life ahead of her. At least you have found the underlying cause of the problem.