rowingmom

A link for the free full-test of Seneff's paper Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseases is here: http://www.mdpi.com/...-4300/15/4/1416

Thanks for the link, sounds interesting but I can't really afford to buy the presentations. A link for the free full-test of Seneff's paper Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseasesis here: http://www.mdpi.com/1099-4300/15/4/1416

We usually saw herxing within 2-3 days with good bartonella abx. With abx that weren't so good, within 14 days (penicillin), with A-Bart (homeopathic bartonella herbal) we have seen herxing within 20 minutes.

DD12's PANS symptoms were caused by bartonella. Whether or not this was tic-borne, we aren't sure. Approx. 1 month after a nonEM rash, and also an MMR booster, she developed motor ticcing which gradually developed a vocal component. She didn't develop the pain symptoms and IBS associated with bartonella for another 2 years, and it wasn't until then that I twigged that her problems might be infection based and started looking for the reason. She didn't begin treatment for approx. 2.5 years after ticcing started (she doesn't have much in the way of OCD, but lots of ADD). Treatment included multiple, combination abx protocols prescribed by our LLMD (lyme literate medical doctor), and included biaxin, rifampin, plaquinel, minocycline, azithromycin, tindamax and malarone. Antibiotic treatment often caused flares of her Tourette's symptoms, which I now realize (that for DD anyway) were caused by toxins released by bacterial die-off. Gram negative bacteria like syphilis (bartonella and lyme are both gram negative) can produce herxheimer reactions. As the toxins were allowed to leave her body through detoxing, the ticcing would resolve. After 2 years of fairly heavy antibiotic treatment, addressing MTHFR deletions with methylated B vitamins and making sure detoxing was helped along with epsom salt baths, magnesium supplementation, lemon juice sweetened with stivia daily, and psyllium husk to help daily bowel evacuation, her Tourette's symptoms are at an all-time low. Our LLMD suggested stopping treatment but I wasn't comfortable with that option, so we continue on Stephen Buhner's full bartonella herbal protocol, and DD continues to improve. Please see my signature for more specific information. Welcome to the forum!

I think we all do to some extent .

Often lyme tests will seroconvert to positive after some period of abx treatment. The reason being that the immune system, once suppressed by infection, is allowed to respond properly when the bacterial load is decreased. This is what happened with DD's lyme tests. Her Igenex lyme bands are starting to show more reactivity, even though she is less symptomatic. We were lucky that her bartonella PCR was positive. Not many people can take the leap of faith the LLMDs do when they clinically diagnose. I certainly didn't have that faith when we started out 2 years ago.

It will help immensly to chart ticcing and other symptoms against treatment (both abx and natural). I do it daily and got the idea (and template) from this forum . It doesn't actually really help in the beginning because you tend to think that everything is a relapse (isn't PTSD a wonderful thing?), but in the long run you learn what increases ticcing (for us it was definately die-off) and how long it takes to resolve (for us it was a matter of being allowed to detox). If you would like a template just PM me.

Are you on a protocol that your lyme specialist thinks will address ALL the coinfections? Is your lyme specialist affiliated with ILADS? Does your DD have any clinical symptoms of a specific coinfection? DD didn't develop the physical pain symptoms of bartonella infection until 2.5 years after her bite. The autoimmune symptoms started within a month of the bite and MMR booster (same month, Aug 2008). Both lyme and bartonella can be very immune suppressive resulting in low Ig response to the antibody tests. PCR tests look for the presence of DNA and can be more reliable. Although even Igenex doesn't have the capability to test for all the existing species of coinfections they do test for the more prevalent ones. I would run the coinfection tests anyway. Our LLMD clinically diagnosed bartonella, the test came back positive and we treated for that. Toward the end of treatment we found that additional abx for babesia resulted in further improvement. I had not considered a protozoan component before DD's improvement with malarone and now lately, cryptolepis. We continue to retest yearly. Bartonella titers are declining and lyme-specific bands are becoming more reactive as DD's immune system improves.

Thank you all very much, VERY helpful! We are going to pursue vitamin therapy either with Mensah or someone else. Still looking into it. He was only tested for Lyme...we are in AZ and he's never been anywhere besides AZ and CA so I think Lyme was a slim chance and his Neurologist didn't even want to test for it, but we pushed for it. I was also tested for it and it came back negative. I know it can be really tough to find though... Mensah seems very knowledgeable on methylation, but they do look at a lot of things including metals and organic acids. I think at first they focus on the B and D vitamins, and specifically copper, zinc, and histamine results. Also Pyrrole which he tested negative for. Just because lyme results are negative or weak doesn't necessarily mean that the coinfections are not involved. DD was also negative for lyme, but highly positive for bartonella.

We didn't have access to IVIG so didn't use it. But here's my 2 cents worth: IVIG will be helpful for PANS/PANDAS symptoms if there is no ongoing infection. If the infection has been delt with (either by the immune system or abx treatment) and there are no remaining bacteria to elicit further antibody production, IVIG will help mitigate autoimmune symptoms. If infection remains (and this doesn't necessarily have to be strep, but can be other bacteria that haven't been tested for or even considered) IVIG will produce short term results only. Just 2 cents.

Some LLMDs think that by starving bacteria of the nutrients (minerals/fats/protein) they require, they can weaken the infection. Stephen Buhner thinks it's important to supplement minerals/nutrients that the infections are parasitising in order to support the proper function of the body. That a body strong body will be more capable of dealing properly with infection and that a body weakened by nutrient deficiencies (and it's symptoms) will eventually just succomb to that weakness. I happen to think Buhner is right. Parasites don't care about the condition of the body and will keep removing nutrients until there is nothing left to remove. At this point the patient will no longer be functioning. We supplement magnesium (magnesium citrate) and find it helpful. Mg is also important for the methylation cycle. http://gotmag.org/mg-deficiency-affects-mthfr-really/

Are you seeing one of the PANS specialists and receiving treatment? Are you sure you are only dealing with mycoplasma? Mycoplasma infections are often associated with lyme and the other coinfections, bartonella, babesia, ehrlichia, anaplasma. I would suggest finding an ILADS-associated LLMD and at least do some lyme/coinfection testing. I found that DD's tics were associated with toxin buildup from die-off, produced either by her immune system (ie, after and infection we would see ramping) or by abx treatment (increased ticcing with changing/increasing abx protocols). I suppose you could assume this would apply to the build-up of untolerated ingredients in food as well. We only have one effected child (DD12). Our 17 yo son doesn't have PANS, so I can't comment on multiple siblings.

DD took rifampin/biaxin for 1 year before we started adding other abx to the mix, including tindamax. I think in this way we were able to bring down the total load before adding the cyst buster. When we added tindamax DD was unable to detox all the die-off with a continuous protocol so we had to pulse to get through tindamax treatment. Before she was switched to a pulsed protocol herxing just got worse and worse. It was horrible. With the pulses, the herx was bad for a day or so (3 days on 4 days off), but would then taper and she would be good for the rest of the week. The herxes got progressively smaller until she wasn't herxing to tindamax at all. At this point we weaned from abx. I wouldn't be averse to switching to a more local LLMD, especially if he/she is involved with ILADS and attends the conferences. DD's best progress was made with malarone, even though she didn't test positive for babesia. It was like a switch was flipped. Calm, easy-going, and helpful. No frustration/raging. And we are now have a similar response to cryptolepis (herb for protozoan infections). Our LLMD decided to add malarone to the mix when DD wasn't progressing as expected. Sometimes you just have to throw different combos at it until you find results. An LLMD who knows how to do this will be an asset.

Gee, I must have been the only parent from this forum who didn't attend. Good for all you who did!

we believe myself and my son have bartonella, but he is not handling any treatments at all, makes his rages psychotic, just single drop of an herb makes him crazy, wondering if you could share your LLMD with me and if anyone has heard of someone going psychotic on the slightest bug killer? Yes, bartonella treatment can cause extreme raging herxes and did for us until we managed to get her bacterial load down. Our daughter is still herxing with changes in her herbal protocols, but they consist only of minor bone pain now. If you post a new topic requesting an LLMD in your area someone will get back to you.

Once you have lyme, I don't think you can erradicate it. The different forms sequester in cartilage and other less vascularized tissues that are hard for both the immune system and abx to reach. I think the best we can hope for is to bring the immune system to a place where it can keep the infection from re emerging. Like chicken pox in children - if the immune system is suppressed in adulthood a shingles infection appears. Only in the lyme case, you would have a relapse. I think you can expect to have IgG antibodies to most infections if the immune system is working properly. If IgG is very high or rising and not declining, or if IgM is positive you may have an active infection. But it sounds as though your son's immune system is handling his infections properly; that he has reached a place of balance. He is showing no autoimmune response and is not symptomatic. This is how the body is supposed to handle infection. My suggestion would be to continue on the supplements and homeopathics you are using, they are obviously working, and stay alert for symptoms of relapse. Gee Whizz. You are at the place where we all hope to be . A kid with a body that reacts properly to infection. Not a kid with no infection, that is an impossibility.

Thank you so much. I took a look at her slide presentation. There was a good overview of lyme and coinfections in general, but no real mention of any association with PANS reactions. I look forward to hearing the talk if/when it is released.

Sorry. Babesia, ehrlichia and bartonella were specifically addressed? I am looking through the PowerPoint presentations at the moment, but haven't gotten that far I guess.

Here is an archived topic on vaccine exemption that might give you some ideas: http://www.latitudes.org/forums/index.php?showtopic=17499&hl=%2Bvaccine+%2Bexemption

It's too bad they didn't ask specifically about lyme coinfections. Especially bartonella.

Hi and welcome. It sounds like your son may be relapsing or perhaps showing symptoms of a coinfection (bartonella, babesia, ehrlichia) that wasn't addressed with doxy/amoxicillin. Sorry I'm not of any help with suggestions for a LLMD - perhaps start a new post stating LLMD in Wisconsin and others may help. You could try contacting ILADS for a referral, but they seem to be slow in responding. Worth a try though.

Thank you, I have sent this along to our PANDAS-friendly but unable to treat (Canadian practice) pediatric psychologist.

"Treatment with antibiotics resolved symptoms in a short period of time." Well, at least he gave them the PandasNetwork.org site.

The dosages for all adult and children's protocols can be found on Buhner's website, as well as suggested retailers: http://buhnerhealinglyme.com/ See the left side of the main page for the coinfections protocol that you need. All of his books contain this information as well. The herbal antibiotic book contains a formulary including instructions on making decoctions, tinctures, ointments, glycerites etc: His site used to be interactive, with people posting questions and Stephen answering, but I think he has gotten too busy for that now. Anyway, there is lots of information. He has an associate who can be contacted for consults as well. For DD (80 lbs) I use 1/4 tsp japanese knotweed tincture TID and 1/4 tsp japanese knotweed decoction TID. In addition she is using sida actua, cryptolepis/sida/alcornea, teasel and A-Bart tinctures, powdered houttuynia and cordyceps, low dose astragalus and some other supplements. I purchase the knotweed tincture from here: http://www.woodlandessence.com/herbal.htm The tincture is $40 for 4 oz. And the organic powdered knotweed herb from here: http://www.1stchineseherbs.com/hu_zhang.html The organic powdered rhizome is $15/lb which lasts more than 6 months. Buhner recommends both of these retailers. I am using Buhner's full bartonella protocol (minus l-arginine, plus cryptolepis/sida/alcornea (also from WoodlandEssence,)) for myself as well and have found it to be immensely helpful.

Welcome. Please come and join us on the PANS/PANDAS (and Lyme) forum. Sorry to say I don't think too many of us check the Member Introductions forum. We are too busy yacking about PANS/PANDAS . In the mean time, here are some posts from a topic started April 2013: http://www.latitudes.org/forums/index.php?showtopic=20404&hl=%2Bflu+%2Bvaccine If you would like to do a search of any topic, look at the top right hand portion of the screen, just under your member name. You will see a light grey "Search..." indicator. Type your topic and pick the forum you would like to search the answers for.