rowingmom

Here is a good review of berberine. Stephen Buhner does spend some time discussing it in his Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria, but doesn't use it in either the bartonella or babesia protocols which is what we are using at the moment. http://joeylott.com/berberine-herbs/ Yet it is important to understand what the berberine plants do and what they do not do when used as medicine for their antibiotic qualities. They work almost exclusively on the digestive system. They do NOT work on systemic infections. What this means is that berberine plants are wonderful for infections or overgrowth in the digestive system – things such as small intestinal bacterial overgrowth (SIBO) or cholera..

Nicely done!

If it didn't contain mono antibodies and the mono virus was remaining in her system, she will have to produce more of her own before she can overcome the infection. From Wikipedia: Serum albumin, often referred to simply as blood albumin, is a globular protein that in humans is encoded by the ALB gene.[1][2][3] Serum albumin is produced by the liver, occurs dissolved in blood plasma and is the most abundant blood protein in mammals. Albumin is essential for maintaining the oncotic pressure needed for proper distribution of body fluids between blood vessels and body tissues; without albumin, the high pressure in the blood vessels would force more fluids out into the tissues. It also acts as a plasma carrier by non-specifically binding several hydrophobic steroid hormones and as a transport protein for hemin and fatty acids. Too much or too little circulating serum albumin may be harmful. Function[edit] Albumin functions primarily as a carrier protein for steroids, fatty acids, and thyroid hormones in the blood and plays a major role in stabilizing extracellular fluid volume by contributing to oncotic pressure (known also as colloid osmotic pressure) of plasma. Not sure if albumin contains any immunoglobulins.

If PEX removed mono antibodies and mono is still present in her system; now with nothing to challenge it, I imagine a reoccurrence would be possible. Did she receive donor plasma, albumin or saline?

That was our LLMD's take on DD's bartonella infection from the get go. That bartonella was the cause of DD's PANDAS symptoms and that by treating the infection properly the PANDAS symptoms would resolve (even though DD always exacerbated with strep infections). Our pediatric psychologist was the first to suggest PANDAS to me, however PANDAS treatment is not an option in Canada. With our government funded healthcare system, treating outside the system was impossible and out-of-pocket costs in the US were unmanageable. At first I was frustrated by our inability to treat with IVIG or PEX, but this roadblock was a blessing in disguise. It saved us years of searching down the wrong path. When I first came to this forum PITANDS (PANS) was barely being discussed, and those that brought up the possibility of lyme or other infections as the causal entity in the PANDAS forum were pretty much ignored or asked to leave. This was when the Lyme and PANDAS forums were separate. I noticed that many of the lyme children were suffering PANDAS symptoms along with physical symptoms that did not seem to fall into the strep infection category. Some of DD's pain symptoms were similar to those of another child suffering from lyme/co, so I took what I thought was the second-best route. Off to the LLMD in the US. I was surprised (and fortunate) that our LLMD (a pediatrician who treats lyme/co in children and adults) had such a grasp on PANS/PANDAS. She was the first to indicate to me that the complex of symptoms that is PANDAS did not indeed have to be caused by strep, but could also be caused by lyme, bartonella or other infections. And that it wasn’t an autoimmune response, but an inflammatory response to infection. She also believed that autism is the result of underlying infections and methylation blockages (and thus an inability to detoxify) – I bring this up because DD has (had) an Asperger’s diagnosis as well. This has indeed been the case for us. Antibiotic treatment for bartonella resolved several of DD’s bartonella pain symptoms right away (so I knew we were on the right track in that respect), but it wasn’t until perhaps a year or so into multiple/combo abx that PANS symptoms started resolving as well. Initially DD’s PANS symptoms flared immediately with abx induced die-off or with other infections (mostly viral). During a viral infection (and fever) PANS symptoms would decline during the fever only to re-immerge when the fever dissipated. But after that year and a half of treatment DD stopped responding in that way. She never has flares in PANS symptoms now. Rages, urinary incontinence, behavioural regression etc. are all things of the past. The fact that die-off (caused either by fever or abx) caused a flare in PANS symptoms indicated to me (just thinking out loud now) that it was brain inflammation induced by endotoxin release that was causing DD’s PANS symptoms. Not autoimmune antibodies circulating in the system as per the PANDAS/Swedo hypothesis. The fact that DD’s herx-induced flares started within minutes/hours of dosing or that removing the antimicrobial lead to an almost immediate decline in symptoms indicated to me that autoimmune antibodies were not likely involved in our case. Perhaps there are two causes for the PANS/PANDAS responses we see in our children; the autoimmune and the direct inflammation. I think in ours it was direct inflammation caused by endo/exo toxins and released cytokines . In DD’s case resolution of most of her PANS symptoms was a direct result of bartonella treatment. The only remaining one was essentially some cognitive/executive function difficulties which have resolved with babesia treatment. Buhner postulates that autoimmune reactions are misunderstood and that they are actually caused by our immune systems attacking undiagnosed intercellular infection. I personally think that the autoimmune hypothesis has lost the forest for the trees. I think Stephanie Seneff's description of the causal factors of autism also apply to the reasons for the long-term chronic infections that our children are experiencing: http://www.autismone.org/content/defining-autism-dr-stephanie-seneff-0 It is the body's terrain, the ultimate inability of the immune system to properly deal with infection and the inability of the body's detoxification systems, not the infections themselves, that are causing many of the chronic problems we see in today's children.

That all sounds pretty complex to be a tic, especially if he hasn't experienced them before. A tic is more subconscious, a response to a sensation (a tickling or tingling) that doesn't stop until the tic is performed - a shrug, a blink, an eye roll, a jaw stretch, a tongue protrusion, an arm crank, etc. You could ask if he feels a tingling that won't stop until he drums, but it sounds like more of a compulsion or OCD thing to me.

Please don't neglect to test for coinfections. Lyme rarely travels alone.

I first saw these videos posted by Ruby and her mom when we were beginning our PANS/PANDAS journey. A while afterward we realized that DD's PANS symptoms were caused by infection. I have often wondered how Ruby is doing, and hoped that perhaps her mom considered infection other than strep as a cause.

You haven't found any zinc:copper ratio disruptions with this amount of daily zinc? You are treating pyroluria? We have never tested for kryptopyrroles. http://chriskresser.com/rhr-could-copper-zinc-imbalance-be-making-you-sick So, the ideal ratio between these two, if copper is in the numerator and zinc is in the denominator, would be 0.7 to 1, which means anywhere from 70% as much copper as zinc to even amounts of each. And one of the ways that you can recognize this or when you might suspect this, and this will tie into a future question that we’re gonna talk about a little bit later in the show, is that copper and zinc are not only minerals, but they’re also regarded as neurotransmitters in the brain. They have some of the functions of a neurotransmitter, so an imbalance in copper and zinc will lead to things like hyperactivity, ADHD, other kinds of behavioral disorders, and depression; and in fact, a lot of people who are labeled with autism and even paranoid schizophrenia, when they test their copper levels, they find out that they’re elevated. Then high copper can cause severe PMS. That’s another red flag for me where I’ll consider it. It can cause estrogen intolerance, and it can cause skin issues, so people with excess copper have a high incidence of acne or eczema, psoriasis, just sensitive skin in general, sunburn, people who are really apt to get sunburned even if they’re only out for a short period of time, headaches, poor immune function. Another characteristic sign is white spots under the fingernails, excess copper and deficient zinc, that can happen. And then elevated copper is a special problem for people with low blood histamine levels and overmethylators, and that can lead to anxiety and even panic disorders and paranoia and, in severe cases, hallucinations. So, as you can see, most of the effects are nervous system related, nervous and endocrine system, I would say, with particular impact on the brain and behavioral health. So, those are the things to look for when you’re considering copper-zinc imbalance as a potential issue.

Is that oral or transdermal?

So how many mg of magnesium citrate daily do you find effective? We are just resolving a ticcing flare caused by (as far as spacestar and I can tell because her son is having similar responses to the herb) licorice in a combo detox remedy. DD is taking 300 mg mag citrate at night and another 400 or so during the day. Perhaps it helped, but I haven't changed her magnesium dosing for a while so don't know if ticcing would have been worse without it.

I would give another whole day off. It won't hurt anything and may give you clues as to what is going on. If you would like a copy of DD's Excel charts to use as a template, message me with your e-mail address. I can't take responsibility for developing the chart. That all goes to LLM. Not sure where we would be without it. This all gets easier after a while. You just need to realize that every change you make to protocol has the potential to cause die-off (or perhaps allergic reaction). Introductions need to be made slowly, changes need to be made one at a time with ample time between changes to note whether or not a difference has been observed, and you have to be very conscious of reactions. Charting makes it all very visual.

Your practitioner is talking about antibodies, I'm talking about the pathogens themselves, not the antibodies they elicit from the immune system. Bartonella is notorious for residing in endothelial tissue and bone marrow, lyme in cartilage and other connective tissues. These would not be effected by PEX, nor would pathogens residing in the intestine, sinuses etc. If the load in the plasma/blood is decreased to an extent which renders the immune system more capable of handling the infection then you may see healing.

I'd skip tonight, which will give her body some time to work through any buildup and start again at half dose tomorrow. You may find the same reaction to half dose only it might take longer to build, in which case, try decreasing again. If you find a dose that she can consistently handle stay there for a couple of weeks before increasing or adding anything new (ie folate). Are you charting so you can show all of this visually to your doctor?

I would think that PEX would remove any plasma-borne pathogens which may improve symptoms for some period of time. However, any pathogens sequestered in tissue would not be affected and would still remain viable, to re-emerge if the immune system isn't capable of keeping them in check.

As long as she is not acting adversely to the S-Acetyl Glutathione version of glutathione for some reason (as opposed to the regular liposomal glutathione), I would think that your DD is experiencing a herx. If your DD has had issues with folate (were they high doses?) she is obviously having trouble with part of the methylation cycle (which is also involved with detoxification) as well. From anything I have read the S-Acetyl Glutathione form is readily absorbed, so perhaps she is just taking in more than her backed up pathways can handle.

Are you using cannabis to modulate your son's immune system, or as a temporary anti-inflammatory/pain reliever? Are you finding specific improvement from the immune modulation or is cannabis just helping him to cope with symptoms? As you can see from the above posts, for several mom's here we have found the type of pain to be related to species of infective organism. For our children, anti-inflammatories only help so much. Addressing the infection and decreasing bacterial loads has brought healing of both physical and psychological symptoms.

@ sf_mom - thanks for the link to Anderson's list of babesia-like-organism symptoms. He is right on the money about cognitive function and memory. DD and I are so much better in that respect since treating with babesia/protozoa herbs. Words flow easier for both of us now. Also thigh pain. DD never actually experienced large muscle pain until we started using the babesia herbs. Her presenting pain symptoms were all bartonella and mostly associated with long bones, skull and feet. Anderson's bartonella-like-organism list doesn't include marrow infiltration and inflammation though, which should have been included. DD's RBC counts were always on the low end, but never out of normal range.

I am speaking with Julie M Dec 8th for myself and Older son also to see if it will be too overwhelming for me to do with 10DS.Older son tested Poss for Babs but no real symptoms except tired often. I guess I just don't know anymore if younger boy has Bart or Babs bc th igenx and all other lab work came back negative and Dr T thinks Lymes and Pans overlap with symptom's!!!. Dr T says he wouldn't even treat BABs with lab proof. I think I will have Julie M just treat overall immune system which is what I am leaning toward these days for all of us.. I bought the books you recommended and wow way in depth. I hope she isn't too busy to be accessible somewhat. DS responds psychiatrically so often it's scary. Little things send him off. Thanks for all your great answers. I'm glad to hear you are speaking with Julie, although it sounds as though you may lose one of your main doctors (Dr T) by doing so if he doesn't agree with babesia treatment. Herbal treatment isn't accepted by the mainstream and although Dr T is accepting of PANS/PANDAS diagnoses that doesn't exactly put him in the realm of alternative medicine. Can you vet out Dr T and see if he would be willing to keep you on if you were using herbal protocols? He is one of the best in the field; still unaccepting, obviously, that PANS can be caused by infections other than strep or perhaps lyme, but that doesn't mean he should necessarily be dismissed. You did well to make it to him in the first place. Our LLMD told me in the beginning that bartonella caused PANS reactions. Not that the PANS and bartonella symptoms overlapped. This is from a pediatrician who understands lyme and coinfections. Dr T is a good PANS/PANDAS physician but is not knowledgeable in lyme/coinfections. I believe our LLMD was right because as we treated bartonella with abx, the die-off resulted in increased PANS symptoms, and when we had finished treating bartonella the PANS symptoms were not longer obvious. Of course we may have been treating other unknown infections that were causing PANS symptoms with the bartonella treatment. We will never really know. Are you ready yourself to take the leap from antibiotics to herbals? Julie will guide you, but you must understand pretty much everything in the books (resistant virals, resistant bacterials, coinfections mycoplasma and bartonella; and get the new one out next spring on babesia and anaplasma) and be prepared to question her about anything you don't agree with. If your children have tested positive for these infections, I would not dismiss using low doses of antimicrobial herbs to decrease load, allowing immune response to recover. The babesia, bartonella and lyme infections are all immune suppressive and your DSs' bodies may not be able to reach balance using immune modulation alone. There are several immune regulating herbs, but also many antimicrobial herbs which work very well against bartonella and babesia. With herbs, there is a synergism. Together they work more effectively than only a select one or two alone. The bacteria simply can't survive the many, many different constituents present in the herbal combinations. With your son's reactivity to "little things", please, please do not start at any dosage recommended by either Buhner in his books or by Julie during your consult. Start with extremely low doses of only one herb and remain there for a week or so. If you see a herx, decrease dosage to a point where it resolves and stay there for another week. Only then introduce a second herb at very low dose (keeping the first constant) and manipulating it as you did the first until you come to a good dose that doesn't cause a herx before adding the next and so on. Keep all detox protocols in place. Have you tested for MTHFR anomalies? Many of our children can not methylate properly, which is essential to the body's ability to detoxify. They require methylated versions of the spectrum of B vitamins, although not at large doses (we supplement every other day for this with http://www.swansonvitamins.com/swanson-ultra-activated-b-complex-high-bioavailability-60-veg-caps, and 1000mcg sublingual methylB12), to help rectify the problem. Herxing is not necessary. You can regulate dosages so that die-off occurs but not to the point where it causes severe symptoms. Investigate what Julie has to say, but I would hesitate to drop Dr T until you are confident in what you are doing.

I so agree. It pains me to see so many homeless people assumed to be mentally ill, when in reality they are most likely suffering from infection.

It did for DD13. Emotional lability, crying, sadness, raging, frustration, social withdrawl, behavioural regression. Her PANS symptoms and most of her physical pain symptoms resolved with bartonella treatment, but her emotional instability, cognitive and executive function showed the most improvement with babesia treatment. We are addressing both together now in a combination of herbal bartonella and babesia protocols. The low doses we use seem easier on her than abx did, and she is progressing better than with abx. She just seems healthier now. Please read my signature for more specifics on DD's symptoms.

The overall negative outcome of the WB is unimportant. What is import is the number of reported lyme-specific bands. Do you have that information? http://www.anapsid.org/lyme/wb.html

http://www.npr.org/blogs/thesalt/2012/11/21/165633003/rare-meat-allergy-caused-by-tick-bites-may-be-on-the-rise http://www.cnn.com/2012/06/20/health/meat-tick-bite-allergy/

We supplemented liposomal glutathione throughout abx treatment, but after DD started doing better overall and holding her own with herbals, Buhner's associate suggested we switch to the precursors: NAC, L-glutamine and glycine (from GreatLakesGelatin).. As with most normally endogenously produced substances, once you start supplementing the body assumes there is plenty available and slows natural production. Probably why your ND wants to help your DS produce more and not simply supplement. Assuming your DS is capable of natural production of glutathione, I would follow your ND's recommendation and go that route first. http://mthfrliving.com/health-conditions/glutathione/ Some PANS/PANDAS children have trouble with NAC supplementation.

Maybe you could dose zeolite at the day center at 9:00 am or so. WoodLandEssence carries a tincture: http://www.woodlandessence.com/herbal.htm Which may be easier to dose when starting out with lower amounts. The PlumFlower brand is available, however we generally order the NuHerbs brand so I can't comment on that. Were you able to contact them to see when the NuHerbs would be available? Often it doesn't take long for them to restock. This site carries capsules: https://www.drrons.com/chinese-herbs/zhang-hh-capsules.htm and double strength capsules: https://www.drrons.com/chinese-herbs/zhang-hh2-capsules.htm Herxing on houttuynia was significant for DD. Ticcing, anxiety attacks, palpitations, shin pain. Be careful not to start with too much, or not to ramp too quickly. We are holding at 1/4 tsp infused powder TID. No way could we (myself included) get to Buhner's recommended doses.