rowingmom

Did you try to increase zinc gradually? We only dose every other day; if it is causing some kind of die-off due to improved immune function you don't want the herx to get too bad. Smaller amounts over a longer period with keep die-off to a dull roar.

Yes. DD takes 1 capsule of ProtoCol YeastSupport and 3mg of allicin with her 8 am supplements. Either Culturelle or Align (alternating days) at noon, 500 mg green black walnut with her 3 pm supplements and 1 Ultimate Flora at 5 pm, 1/2 hour before dinner. If you find improvement treating viruses, perhaps you should consider using some of Buhner's antiviral herbs (with your LLMD's approval of course). Buhner says they can be used as an adjunct therapy and can be used along with other pharmaceuticals. Mayzoo's signature mentions that her DD is using them as well. The book is here if you are interested in reading it: Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections Keep in mind that we are using only 1/8 to 1/4 of the recommended dosages of the herbs suggested by Buhner. Anything more causes herx difficulties.

So nice to hear! Thank you! I hope you eventually reach the point of the total remission of symptoms that we have. Buhner's herbal protocols have been nothing short of a miracle for us. I am amazed that they actually work better than abx did. DD had celtic dancing tonight and as usual, reported no pain. I didn't think this would ever be possible - the bartonella pain is gone. Babesia was hindering healing, but no longer. But now the darn school has implemented the use of wireless; and although much less electrosensitive than before, DD is complaining of some fatigue/headache by the end of the school day. It has resolved by the time she gets home, but I hate to think of her being effected by EMF's now after all she has been through. At least she isn't ticcing and collapsing from fatigue as she used to in wifi areas. So, so glad to hear of your DD's improvements! Keep up the good work, and if something new seems intuitively good - it just may be. Louise

Our LLMD recommended ProtoCol OrthoFlora Yeast Support (per capsule): Caprylic Acid 250mg Pau D'Arco 150mg Black Walnut 150mg Oregano Oil powder 100 mg Biotin 1000mcg DD takes 1 in the morning with 3mg allicin and then another 500mg green black walnut hulls (Nature'sWay) in the afternoon. For probiotics we use either 1 Culturelle or 1 Align (alternating days) at noon and 1 RenewLife UltimateFlora before dinner. How's your DD doing? Are you seeing any improvement? Thinking of her and you.

Exactly. Only we don't have the time for that. People need to know what is going on. And our governments, the big pharmaceutical and agricultural firms aren't going to be the ones to do it.

We use NaturalFactors magnesium citrate powder - 300 mg at bedtime. Our LLMD also recommends magnesium taurate.

These scientists have no idea of the implications of their tinkering: http://www.i-sis.org.uk/Beware_the_New_Breakthrough_Transgenic_Mosquitoes.php http://www.i-sis.org.uk/New_GM_nightmares_with_RNA.php

We use magnesium citrate with no problem, although I find citric acid to be a bit of an energiser myself. Our LLMD always recommended we use magnesium taurate, although now we supplement both mag citrate and taurine.

I know this might be a far stretch, but was he exposed to pesticides? http://www.ageofautism.com/2014/02/polio-like-cluster-in-california-has-eerie-echoes.html#more http://www.ageofautism.com/2011/09/the-age-of-polio-how-an-old-virus-and-new-toxins-triggered-a-man-made-epidemic-1.html

Julie is an herbalist and Stephen Buhner's consulting associate. http://www.gaianstudies.org/herbal_consult.html Sorry about the taste aversion, but most of the protocol is tinctures and infusions (teas). I suppose you could put the powdered herbs into capsules instead of infusing them, and the tinctures into liquid resistant capsules, but that sounds like a lot of work.... I am so fortunate DD will gag down anything I ask her to .

The trouble with doxy as monotherapy (and I believe this applies to monotherapy for many other infections as well) is that the spirochetes (or whatever bacteria) are able to avoid its effects by encysting, morphing to an acellular (intercellular) form or by producing biofilms. If you are using other abx or antimicrobial herbs in combination, especially those that are able address the different forms all at the same time, there is less ability on the part of the bacteria to be able to evade impact of the antimicrobial. Buhner uses herbs specifically for this reason because, unlike single constituent antibiotics, herbs are comprised of many different constituents, each functioning synergistically (the sum is more effective than the parts). Some herbs contain efflux inhibitors which stop the bacteria's ability to pump abx back out after they have penetrated the cell wall, along with their antimicrobial actions. Some herbs address biofilms along with their antimicrobial actions. Some herbal antimicrobials address more than one form of the bacteria. If combinations of these different herbs are used (with or without pharmaceutical abx - Buhner says his herbs can be used along with abx, just be careful because the herbs are powerful in their own right) the result will be a more complete assault on the infection. Of course, any antimicrobial therapy will be unable to completely eradicate bacteria in the body/gut, and we really don't want that anyway. The immune system has to be supported, which means the gut needs to be properly populated (because it houses a majority of the immune system) allowing the body to naturally take care of any remaining infection. I believe an important part of this gut/immune system support includes a diet without pesticides. Glyphosate in particular acts as an antibiotic, decreasing the amount of beneficial gut bacteria, and a chelator, binding needed minerals in food and making it unavailable for assimilation. http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx First, glyphosate preferentially kills beneficial bacteria in the gut, which allows pathogens such as C. difficile to overgrow. Not only does this lead to leaky gut syndrome, but C. difficile produces something called p-Cresol, a phenolic compound that is toxic to other microbes via its ability to interfere with metabolism. (C. difficile is one of only a few bacteria able to ferment tyrosine into p-Cresol.) As it happens, p-Cresol also promotes aluminum uptake by cells. P-Cresol is a known biomarker for autism and is also an important factor in kidney failure,which leads to aluminum retention in tissues and eventually to dementia. Glyphosate also serves to increase aluminum toxicity by "caging" aluminum to promote its entry into the body. Glyphosate promotes calcium uptakeby voltage-activated channels, which allow aluminum to gain entry as a calcium mimetic. Aluminum then promotes calcium loss from bones, contributing to pineal gland calcification. Bringing melatonin back into the discussion, glyphosate interferes with what is known as the shikimate pathway. Although humans do not have the shikimate pathway, our gut flora do, and we depend on our gut flora to supply us with essential amino acids and many other things. Disruption of the shikimate pathway in our gut results in depletion of tryptophan, which is the sole precursor to melatonin. Besides needing melatonin to transport sulfate into the brain, we also need melatonin to reduce heavy metal toxicity. Where supplies of melatonin are adequate, melatonin will bind to aluminum, cadmium, copper, iron, and lead, and reduce their toxicity. Where melatonin is low, a lot of damage can result. http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf http://www.i-sis.org.uk/How_Roundup_Poisoned_My_Nature_Reserve.php ....Monsanto has a total of four patents filed on the chemical. They bought it as a chelator of heavy metals (used for cleaning boilers by ‘grabbing’ minerals) [10] and then marketed it as herbicide [11]. In addition they filed a patent on it as an antibiotic in 2002 [12] and as an antiprotozoal against malaria in 2003 [13]. For me, the above explanation can be the only reason I have seen continual improvement in DD with every herb we have added. We are treating only with low doses, but the addition of herbs that address protozoan (intercellular) infections has given DD great gains. Gains that we didn't have using bartonella herbs (or bartonella abx - biaxin, rifampin, azithromycin, plaquinel, tindamax, malarone, minocycline in various combinations) alone. I'm not saying that you need to use herbs, but I think monotherapy will not be productive in the long run.

And unfortunately lyme doesn't travel alone. He should be tested for the coinfections common in your area. Everything I have heard from the lyme community recently says that doxy simply forces the spirochetes into a cyst form. This will result in a decrease in symptoms, but the cysts open when abx treatment stops..... I am so sorry.

Again, I think if I just saw ticcing and no recurrence of other symptoms, I would assume I was looking at a toxin build-up of some sort. A relapse would probably include the whole constellation of symptoms. Using a chart to record symptoms vs protocol can be very helpful as you look back at the effectiveness of different protocols. Having said that though, DD's bartonella herxing did include some bartonella symptoms, but they were not of the magnitude of the original ones. She would often have shin pain, pick-like headache and some emotional lability along with ticcing, They would ramp up over a few days and then slowly decline (more slowly than they ramped up). We really saw this with tindamax. DD wasn't able to detox from this abx without withdrawing it altogether. So our LLMD prescribed a pulsed protocol (4 days on 3 days off). We would see the initial herx within 8 hours, but by the end of the 3rd day on, her symptoms would have already started to resolve. By the end of the 3 days off she would be back to baseline or better. If you want a copy of the Excel chart I use as a template for your own, just ask.

How long has it been since since you started the combo abx? Sometimes the buildup of toxins to herx threshold takes a while, perhaps 3-5 days. On the herbs we are using now, and increase of 1 drop 1x daily can take as long as a week to 10 days to show up. For us, ticcing was always an indication of toxin build-up of some sort. Usually bartonella die-off, but yeast die-off and mold exposure will do it too. We had a relapse of symptoms with monotherapy PenVK, but once DD started combos, all of the reactions were herxes and would wane if dosage was decreased or discontinued, or we waited 7-10 days for detoxing to help clear it from her system.

When we lived in Louisiana our hunting retriever had lyme. I saw the EM rash, but did nothing about it. That was years before kids and all we have gone through with DD. He eventually developed prostatitis and had to have ACL ligaments replaced in both back legs, but that was the extent of it. No other symptoms. The dog lived to be 16 and died of a twisted bowel.

How RoundUp Poisoned my Nature Reserve, Rosemary Mason MB ChB FRCA, New South Wales. http://www.i-sis.org.uk/How_Roundup_Poisoned_My_Nature_Reserve.php Following the recommendations by Monsanto, farmers had been using glyphosate as herbicide throughout the crop growth cycle; and at the end they were also desiccating (drying) or ripening crops with glyphosate sprayed about 7-10 days before harvest [7]. So, some of us in Europe are receiving glyphosate residues in all our non-organic staple foods, such as bread, cereals, potatoes, pasta, pulses, rice, sugar, beer, whisky, etc.[6] and many foods from the US made from corn or soya (mostly GM). Not only that, a collusion between UK’s PRiF, European Food Safety Authority (EFSA) and Germany as Rapporteur Nation for European Union with Monsanto led to a 100-fold increase in the permitted glyphosate levels in lentils “In order to accommodate the authorized desiccation use of glyphosate on lentils in the United States and Canada” without consultation with European Parliament or the public (see Box 2). When humans ingest glyphosate residues in staple foods, or animals get them in GM feed, beneficial bacteria are continually being destroyed causing failure of absorption of nutrients and minerals. Worse yet, the toxic bacteria on the other hand can thrive. We learned later from colleagues in the US that Monsanto has a total of four patents filed on the chemical. They bought it as a chelator of heavy metals (used for cleaning boilers by ‘grabbing’ minerals) [10] and then marketed it as herbicide [11]. In addition they filed a patent on it as an antibiotic in 2002 [12] and as an antiprotozoal against malaria in 2003 [13]. Samsel & Seneff subsequently published another paper on the chemical: Glyphosate, pathways to modern diseases II: celiac sprue and gluten intolerance [14]. Analysis in local tap water in August 2014 revealed a 10-fold increase since August 2013; from 30 ppt to 300 ppt. If Roundup® continues to be sprayed in the same quantities (whatever they are), this area of South Wales will become a biological desert. At the same time, Glyphosate-resistant Japanese knotweed has appeared in August 2014, regrown after spraying early in 2014. On 9 July 2014, ISIS circulated Scandal of Glyphosate Re-assessment in Europe (SiS 63) [31], revealing that the German Rapporteur Member State’s Federal Institute of Risk Assessment (BfR) and its federal agency partners did not actually review the published toxicology studies, but relied on a summary provided to them by the Glyphosate Task Force (GTF), a consortium consisting of Monsanto and chemical companies all over Europe, including Syngenta UK and Dow Italy, with an odd one from Taiwan. GTF describes itself as [32] “a consortium of companies joining resources and efforts in order to renew the European glyphosate registration with a joint submission.” Hence Monsanto and other companies who stood to gain from selling glyphosate herbicides were given free rein to pronounce glyphosate effectively even safer than before [33], hence the increase in Acceptable Daily Intake (ADI) recommended in the RAR. Removing these chemicals from our children's food can only help. Removing them from the water may be problematic.

Sorry, I can't help with the taste aversion. Our DD will take pretty much anything. I used to joke with her that it was "frog juice", and that one day she might turn into a frog! But we didn't deal with much OCD or opposition, mostly ticcing and raging over frustration (involving her inabilities to accomplish things involving fine motor control, cognitive ability, attention etc.). I am taking the herbal infusions and tinctures along with her, and have done so for the last 2 years, so that may help as well. The herbs don't taste bad to me, because I realize the healing they are bringing, but they do taste different - not something a child would be used to. DD however is used to eating different things. For instance she eats beets, wilted greens and sweet potatoes for breakfast. Not something your average kid would eat; I just didn't give her the option. She got used to it. Julie McIntyre is available for phone consults and then will reply to questions via e-mail for approx. 2 weeks after the initial call. http://www.gaianstudies.org/herbal_consult.html Does your daughter have any diagnoses other than lyme? Lyme doesn't often travel by itself; usually bartonella, the babesias, mycoplasma, ehrlichia, RMSF can also involved although they may initially test negative. DD was positive for bartonella, but it is only now, after 2 years of abx treatment and 6 months of herbal treatment that we have found that an unidentified protozoa (or babesia-like-organism) was hindering improvement.

Chubbermommy - we only did the initial Igenex testing for duncani and microti, both of which returned negative. DD was completely asymptomatic for babesia. Our LLMD knew that something was holding DD13 back from full recovery from her bartonella and PANS symptoms even after aggressive bartonella treatment. She had improved over the 1.5 years, but not completely. Because of this the LLMD prescribed the 6 month trial of malarone which brought the cognitive/executive function improvement I mentioned. The cognitive improvement happened almost immediately, but with no improvement in bart/PANS symptoms, and no herxing to indicate babesia. Since weaning from abx I have taken on responsibility for the herbal protocols, under consultation with Buhner's associate. Our LLMD supports our choice, and we have been back a couple of times to talk with her and to run CBC/CMP panels, although she is no longer prescribing. She felt she wasn't informed enough in using herbal treatments to continue treating DD (like I am, or something!), but I wasn't willing to let DD relapse because she obviously still wasn't 100%. Because of DD's babesia herx response to the tincture Buhner uses for protozoa/babesia infections (CSA - cryptolepis, sida acuta, alchornea), our LLMD has clinically diagnosed babesia as well, although we have not retested to try and figure out which one. The herx symptoms were so obvious (air hunger, sighing, dry cough, feeling of chest pressure) it was like being hit over the head: this child has a babesia-like-organism. I don't think hunting to find the organism responsible would add any more information at this point. We have a clinically diagnosed BLO infection and it is responding to herbal treatment.

DD13 also didn't see complete improvement with bartonella treatment, so although testing had initially returned negative for the babesias (and we have never retested) our LLMD decided to trial malarone. Malarone didn't improve the remaining bart symptoms, but did significantly improve cognitive/executive function. She continued on malarone (along with plaquinel, pulsed tindamax, azithromycin and minocycline) for the final 6 months of abx treatment and maintained the cognitive/executive improvements, but when we weaned (April 2013) DD was still only at approx. 80% improvement for PANS and bartonella pain symptoms. The afore mentioned antibiotics were not enough to resolve whatever her infection was/is. She continued at this level (80%) throughout the next 8 months of herbal treatment for bartonella. It wasn't until we added herbs from Buhner's babesia protocol in Nov 2013 (we still don't know what kind of babesia or protozoan we are dealing with) that we saw all PANS and bart pain symptoms start to resolve along with unprecedented cognitive improvements. This was a gradual resolution, and I wouldn't have expected anything faster because we are only using low 1/4 dosages. Herxes were significant at higher dosages. With the addition of every new herb from Buhner's babesia protocol I have seen continuing improvement. I can confidently say she is now performing beyond anything I have ever hoped for. Only a suggestible motor tic (only visible if suggested), is keeping me from reporting 120%.

This is a good blog on gut / microbiome health and remediation: http://drbganimalpharm.blogspot.ca/

Our daughter's infections were suspected to be congenital, but we will never know. Her treatment was no different from treatment used for chronic infection. She was treated for 2 years with multiple combination abx with a pediatric LLMD in Buffalo (who also treats adults) and recovered to approx. 80%. I have continued with Buhner's bartonella and babesia protocols in consultation with Stephen Buhner's associate Julie McIntyre. We are both recovering well with herbal treatment. I have never been treated with abx.

I believe this homeopath is in the UK. I found his link on Amy Lansky's blog. I see he appears to be getting results with children with PANDAS as well as autism. http://alanfreestone.com/blog/ The only homeopathy we have really used was through our ND; a remedy for brain trauma/concussion, when DD was hit in the head with a dodge ball. It appeared to work well, but we didn't get to using the remedy for about a week, so perhaps it was time for the inflammation to resolve anyway. As a biologist, I can't really wrap my head around homeopathy, but that doesn't mean it isn't useful. We have not used this homeopath.

If you are increasing dosages it is probably a herx to whatever you are increasing (sounds like artemisinin). Often now, as DD's infection load decreases, we are not seeing herx reactions for a week or more after a change in dosage. It is very important to modify only one herb/supplement/abx at a time. I wouldn't push through. I would drop back to a lower dosage that wasn't creating a problem and just stay there. According to Buhner's associate, even low doses are helpful, if they are used continuously over a long period. If they are used in a multi-herb/abx protocol, there should be little likelihood of the development of bacterial resistance. If he has been doing well with the other meds and supplements and is only reacting to the increase in the herb, I would keep the meds and other supplements going at your current dosages. They are obviously working. When we began Buhner's protocols, I thought it was important to get to recommended dosages for all the herbs, but we weren't able to get to recommended dosages on anything other than Japanese knotweed. Anything over 1/4 of Buhner's suggestions wreaked havoc and wasn't worth it. We continue at 1/4 dosage of all the various bartonella/babesia antimicrobial herbs - we are well into our second year of bartonella herbal treatment, and our 10th month of herbal babesia treatment - and are now completely asymptomatic. I also mentioned on your other post that Buhner recommends artemesia/artemesinin only be used for short periods. Cryptolepis or the combination tincture CSA (cryptolepis/sida/alchornea) may be another option for longer term treatment. If you would like a copy of DD's Excel symptom charts to see how she has reacted to the various herbal protocols, I will send them your way.

I would decrease artemesia to a very low dose (to a point where herxing stops) and hold there for at least a couple of weeks. This will decrease bacterial load to a point where your DS will be able to handle another small incremental increase in dosage. Do not rush. Bartonella die-off can produce significant psychological symptoms: http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf Stephen Buhner uses artemesia/artemisinin for protozoan infections. If your son is having herx reactions to this herb, you might consider the presence of babesia as well. Please take a look at Buhner's website on the use of this herb. He recommends it for short term use only. We thought we were only dealing with bartonella as well, but we didn't see the great leap in cognitive/executive function improvement that DD is now maintaining until we treated for protozoa. We saw the first improvements with malarone, but because DD had tested negative for both babesias, neither the LLMD or myself thought she had it. We saw babesia herxes (sighing, dry cough, chest pressure, air hunger) with higher doses of CSA (cryptolepis/sida/alchornea), so the LLMD revised her diagnosis to include babesia-like-organisms along with the previous bartonella and IND lyme diagnosis.

Good for you Trinity ( ). Sometimes the answers can't be found through testing. Results gleaned from trial and error can be just as significant. Keep up the great work!