rowingmom

If his symptoms are caused by infections other than strep - our daughter's was caused by bartonella - then 1 antibiotic is not going to be effective. We saw the same initial waning, but then waxing with 2 initial rounds of PenVK for strep. The first 10 day course made a huge difference in ticcing and behaviour symptoms, but during the second course it all came back.

I respect Dr L but the test she uses for lyme is the standard western blot, which is unreliable. I have no idea if your son has lyme or not. But you can't rule it out using the standard WB. Under the pinned threads at the top of the forum page, you'll see "helpful discussions for lyme" - under that heading you'll find articles explaining the various tests. And you can't rule out coinfections (bartonella, babesia, ehrlichia, mycoplasma, RMSF) even if lyme is negative. Buhner believes that autoimmune reactions are not the immune system mistakenly attacking the body, but the immune system attacking undiagnosed intracellular infections and the resulting concomitant fire.

In our journey through PANS-induced Tourette's (in my daughter's case a bartonella infection caused her PANS symptoms) and daily charting (stacked Excel bar chart) of symptom level (1-10) against protocol change, I have come to the realization that for our daughter at least, ticcing is associated with toxin buildup. She probably has some trouble detoxing because of her MTHFR deletion, but the extent to which this has impacted her methylation pathways is unknown. Gut health is very important, so leaky gut (caused by lectins in grains/legumes, or from yeast overgrowth) may be a significant contributor to toxin levels as well. In our daughter's case toxins may have come from any number of places - metal in vaccinations, pesticide burden, yeast and bacterial die-off (resulting either from her own immune system addressing infection or the result of die-off from multiple abx protocols), flouride in water which binds iodine receptor sites in the thyroid. EMFs which cause improper electrical stimulation of cells (our cells and nerves function using the exchange of small electrical charges). Stuff is everywhere these days. I do know that by eliminating most pesticide laden food and GMOs (which impact the gut by killing friendly probiotic bacteria), healing the gut by using a mostly Paleo diet (no grains other than fermented organic oats and California grown organic white rice), addressing bartonella infection using abx and now herbals, parallel treatment with probiotics to replace bacteria killed by abx, we have seen a huge improvement in ticcing. Before bartonella treatment we were seeing complex motor ticcing (spinning, jumping, hand sniffing) as well as other vocal/motor ticcing which included mouth stretching, eye blinking, eye rolling, neck stretching, arm pumping, leg stamping, hair flipping, head nodding, tongue protrusion...the list went on, no complex vocals though, just single vocalizations. During treatment we saw an increase in these behaviours with protocol change, I assume because more or different bacteria were dieing off with each increase/change in antibiotic. With detox (epsom salt, lemon water, psyllium husk) these herxes would resolve within a week leaving her with less ticcing each time than the time before. Her ticcing has been at a low level now since April. At a 1/10 (which for me means her ticcing only happens when I question her about it for daily charting information) her Tourette's is in remission. This would make sense in the light of other's observations that changing to a GF/ CF/non-GMO/organic diet (which would essentially eliminate any number of toxins) could have positive results. Her ped psychologist is quite impressed that we have discovered that, for our daughter anyway, Tourette's seems to be a toxin overload reaction.

I'm not sure about GSE. DD12 had a huge downturn with 5 drops, taken over the course of a week. And I mean HUGE. Motor/vocal ticcing ramped from 3/10 to 9/10 (this was while she was on pulsed tindamax as well). She couldn't even get a sentence out for all the vocals and neck snapping. Loss of math ability, increased urinary frequency, age regressive behaviour (she was 10 but acted about 4). A real mess. Her teacher actually called me crying she felt so bad for DD. At first I assumed yeast die-off and our LLMD agreed with this, so we started curcumin and OrthoFlora yeast support, continued with allicin and raw garlic (which we have always used) did lots of detoxing (Epsom salt baths, lemon water, psyllium husk, increased japanese knotweed). The ticcing eventually resolved along with her other PANS symptoms and resumed the flare with tindamax pulse we had been previously observing. Because our LLMD is in NY candida testing was not available to us. Buhner's associate's take on the GSE reaction was that it had decreased DD's ability to detox by inhibiting cytochrome P450 (ie reason for the statin/grapefruit juice contraindication). This made sense to me because I had always associated an increase in ticcing with a toxin buildup. Ticcing for DD was always exacerbated by changes or increases in abx protocols. But in the last couple of weeks I have seen an increase in ticcing associated with yeast infection, and have also seen it resolve with single dose diflucan. Perhaps ticcing was associated with yeast. Perhaps it was associated with buildup of yeast toxins. Perhaps it was associated with DD's inability to detox those toxins in a timely manner. I don't know. Just our experience.

Nice list. Thanks mayzoo! I have often thought of making kefir from grains, but went the fermented vegetable route instead as that seemed easier. Have you had better luck gut-wise with kefir made with grains as opposed to store-bought or kefir made with starter? I tried to look up the probiotic ingredients in Bravo, but didn't have much luck. They mentioned lactobacillius sp on their website, and then of course the bacterial/yeast species found in the kefir to which lacto starter is added.

Here is number 1/7 videos produced by Loren Cordain (Paleo Diet) describing the connection between diet and the autoimmune disease MS. He talks about leaky gut, lectins, adjuvants and inflammation in this series: http://www.youtube.com/watch?v=_3RvWGx0AJE

DD has never had allergy issues and both she and I seem to have 1/2 high histamine and 1/2 low histamine symptoms. So not sure which catagory she would fall into. She does develop very dark circles under her eyes with treatment herxes and yeast infections. Reposting this from quannie47's post on "Interesting Article": I found this thread on Phoenix Rising which lists several links pertaining to species of probiotic bacteria which either degrade or produce histamine: http://forums.phoeni...obiotics.24643/ From BulletProofExec with lots of self promotion at the end of the article (which is why I sometimes have trouble taking this guy completely seriously): Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods). Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents) Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum, and some soil-based organisms. From TheLowHistamineChef: http://thelowhistami...han-raising-it/ The probiotic Lactobacillus rhamnosus (and a few others) down-regulate the IgE and Histamine 4 receptor while also up-regulating anti-inflammatory agents like (IL)-8. In English (to quote a group friend): the probiotic turns down the dial on two important allergy/mast cell cell/histamine receptors, while enhancing the activity of anti-inflammatory agents. From Chris Kresser: this study apparently looked at various microbial strains and broke them into three categories: one category that’s histamine producing; another category, which seems to be sort of neither histamine producing, nor histamine degrading; and then the third category would be histamine degrading. And so obviously you have histamine intolerance, you’d want to focus on the ones that are histamine degrading, and you’d want to avoid the ones that are histamine producing. And the histamine-producing category is Lactobacillus casei, Lactobacillus reuteri, Lactobacillus plantarum, and Lactococcus lactis, Enterococcus faecalis, and various types of E. coli. And then the ones that seem to degrade histamine and be beneficial are lots of bifidobacteria species, but particularly Bifidobacterium infantis and then Lactobacillus rhamnosus and salivarius and sporogenes and Lactobacillus gasseri. This is the tip of the iceberg because there are a lot more species, obviously, of probiotics out there, and I personally wonder about soil-based organisms. I just anecdotally in my practice have observed that soil-based organisms are much better tolerated by people with histamine intolerance and people with SIBO, so my suspicion is that those are not histamine builders and may even be histamine degraders, but I don’t have any evidence to back that up. I tried to find the original paper for this but had no luck. Just my thoughts: If our children's gut bacteria have been compromised with abx use or a diet containing pesticides (which also effects survival of beneficial microflora) the proper histamine regulating bacteria may be under or over-represented which could produce symptoms of histamine disregulation. This is perhaps why some children do better on acidophilus while some can't tolerate it, and why others do well with some bifido species but not acidophilus.

Google "pictures of yeast in throat". Is this what you are seeing? I have just found out that yeast overgrowth causes DD12 to tic (but not as badly as bartonella did).

Gluten, among other things (yeast overgrowth/gut dysbiosis, pesticides and GMOs which kill healthy gut bacteria), can alter the function of bacterial symbionts, the mucosal barrier and the tight junctions of the gut leading to inflammation throughoutt the body (and in the brain as well), even if allergic reactions are not involved: A De Santis, G Addolorato, A Romito, S Caputo, A Giordano, G Gambassi, C Taranto, R Manna, G Gasbarrini. Schizophrenic symptoms and SPECT abnormalities in a coeliac patient: regression after a gluten-free diet. J Intern Med. 1997 Nov ;242(5):421-3. PMID: 9408073 A gluten free diet is just one aspect of an overall anti-inflammatory dietary approach which allows gut healing.

I found this thread on Phoenix Rising which lists several links pertaining to species of probiotic bacteria which either degrade or produce histamine: http://forums.phoenixrising.me/index.php?threads/rethinking-probiotics.24643/ From BulletProofExec with lots of self promotion at the end of the article (which is why I sometimes have trouble taking this guy completely seriously): Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods). Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents) Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum, and some soil-based organisms. From TheLowHistamineChef: http://thelowhistaminechef.com/these-probiotic-strains-lower-histamine-rather-than-raising-it/ The probiotic Lactobacillus rhamnosus (and a few others) down-regulate the IgE and Histamine 4 receptor while also up-regulating anti-inflammatory agents like (IL)-8. In English (to quote a group friend): the probiotic turns down the dial on two important allergy/mast cell cell/histamine receptors, while enhancing the activity of anti-inflammatory agents. From Chris Kresser: this study apparently looked at various microbial strains and broke them into three categories: one category that’s histamine producing; another category, which seems to be sort of neither histamine producing, nor histamine degrading; and then the third category would be histamine degrading. And so obviously you have histamine intolerance, you’d want to focus on the ones that are histamine degrading, and you’d want to avoid the ones that are histamine producing. And the histamine-producing category is Lactobacillus casei, Lactobacillus reuteri, Lactobacillus plantarum, and Lactococcus lactis, Enterococcus faecalis, and various types of E. coli. And then the ones that seem to degrade histamine and be beneficial are lots of bifidobacteria species, but particularly Bifidobacterium infantis and then Lactobacillus rhamnosus and salivarius and sporogenes and Lactobacillus gasseri. This is the tip of the iceberg because there are a lot more species, obviously, of probiotics out there, and I personally wonder about soil-based organisms. I just anecdotally in my practice have observed that soil-based organisms are much better tolerated by people with histamine intolerance and people with SIBO, so my suspicion is that those are not histamine builders and may even be histamine degraders, but I don’t have any evidence to back that up. I tried to find the original paper for this but had no luck.

I believe they have been treating with Dr J for some time with little improvement. Recently trinity posted that there had been some positive bowel response to Align (B infantis) and black walnut hull which leads me to think that gut dysbiosis might be involved. Some good information on SIBO in this blog: http://drbganimalpharm.blogspot.ca/ And more specifically on how to help fix the problem here: http://drbganimalpharm.blogspot.ca/2013/11/how-to-cure-sibo-small-intestinal-bowel.html Gut dysbiosis has been linked with autism and cytokine dysregulation and may cause behavioural problems: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0037932 http://physio.ucsf.edu/GEMS/courses/Immunology/materials/fa12_essential_immunology/august_29/kuchroo_nature_medicine_jclub.pdf http://drbganimalpharm.blogspot.ca/2014/01/two-case-studies-diarrhea-ibs-and.html Gut function impacts the function of the immune system. In the last few weeks our DD had been developing more dark circles under her eyes as well as some return of motor ticcing (a level of 3/10, up from 1/10 suggestible only) which we hadn’t seen since April. All of a sudden she developed a symptomatic yeast infection. After one 500 mg capsule of diflucan all symptoms resolved, under her eyes cleared up right away, but then started coming back after about 10 days. It was then I realized that the herbal protocol she is on may be stonger than I thought. In a quest to eliminate some of the supplements she was taking I had stopped supplementing with curcumin, OrthoFlora yeast support (oregano oil, black walnut, caprylic acid) and encapsulated probiotics, using only sauerkraut for inoculation of gut bacteria. Upon reinstating the full probiotic protocol we used during abx treatment and restarting the yeast supplements all of her symptoms have cleared. Healthy gut bacteria are impacted by glyphosate (thanks 3bmom): http://www.mdpi.com/1099-4300/15/4/1416 http://articles.mercola.com/sites/articles/archive/2013/06/09/monsanto-roundup-herbicide.aspx so obviously immune function will be impacted as well. Another good blog on gut/immune interaction: http://gutness-gracious-me.blogspot.ca/

Yes, summer's all good except for those nasty, biting arthropods.

DD was taking both A-Bart and A-L for 1.5 years of her 2 year abx treatment. Initial herxing included increased motor/vocal ticcing, pick-like headache, shin pain, foot pain, increased emotional lability. Herxing appeared within 20 minutes of increased dosages. And this was after a previous 6 months of treatment with biaxin/rifampin. She was still suffering from significant decline in executive function at this point, but I don't recall it becoming worse. DD never did have much in the way of problems with memory/anxiety or OCD; just a clinginess to me. DD made it up to dosages of 30 drops BID of both A-Bart and A-L which we were able to maintain for about 8 months while still on abx. At this point we saw the waxing/waning of ticcing etc with pulsed tindamax, but not in between pulses, so she was obviously not reacting to the continuous A-Bart with symptoms. When we weaned abx and started Buhner last April I discontinued A-Bart/A-L as well so as to not mess with the new protocol. After 6 months of the bart protocol I added A-Bart back into the mix (per LLMD) and saw an immediate and similar herx to the previous ones at 2 drops BID. DD has not been able to make it past 4 drops BID. I would think that if A-Bart was going to produce healing, 8 months of 30 drops BID should have done it, but it didn't. DD continues on 1 drop TID, for what it's worth. We have seen much more improvement with Buhner's bartonella/mycoplasma/babesia protocols than with ByronWhite. Just to be fair though we never used the BW detox remedies. Our LLMD recommended homeopathic ones that she said she liked better. Can't say I see any difference on or off of those.

Wonderful! I just found this article with lots of links to research being done on the effect of the gut microbiome on inflammation, mental health and behaviour. http://www.greenmedinfo.com/blog/psychobiotics-bacteria-your-brain

We have been using Buhner's full bartonella protocol since Apr 2013 after discontinuing 2 years of abx treatment for bartonella. Here is a link to the protocol, but I really would suggest buying his book on the Mycoplasma and Bartonella coinfections: http://buhnerhealinglyme.com/ BARTONELLA Research is ongoing, this is the most up to date protocol: • Sida acuta tincture (from Woodland Essence or julie@gaianstudies.org) ¼ tsp 3x day for 30 days • Hawthorn tincture, same • Japanese knotweed, (tincture, same dose (from same sources as Sida acuta, above), or capsules from Green Dragon Botanicals 2 capsules 3x daily) • EGCG 400mg +- daily • Houttuynia (Yu Xing Cao – 1st Chinese Herbs, powder – use “LYME” code at checkout for 10% off) 1 tbl daily • L-arginine 5000 mg daily in divided doses • Milk Thistle seed, standardized, 1200 mg daily All for 30 days. PLEASE NOTE: If you have active herpes, chicken pox, or shingles DO NOT USE L-arginine. see also: bartonella We are not using l-arginine, as I think many of our kids are also dealing with viral infections. After 7 months of this I added the combination tincture cryptolepis/sida/alchornea from WoodLandEssence. This produced a significant babesia herx which included chest pressure/air hunger and sighing. So now I know we are also dealing with a babesia-like-organism (protozoa) as well. The doses DD is taking are lower than those outlined in the above protocol, but Buhner's associate said that as long as DD remains on the protocol for 1-2 years she will eventually eliminate the infections. The effects of these herbs is real. They differ from antibiotics in that they contain multiple constituents, not single ones like abx (which the bacteria are quick to become resistant to). DD is maintaining 98% improvement with no flares (just the odd herx from changing herb dosages) and has for the last 9 months.

Thanks. I have sent this on to our ped psych in Niagara Falls and the clinical coordinator for the Center for Applied Disability Studies at Brock.

I thought of your daughter when I saw this link yesterday. http://blog.listentoyourgut.com/doctors-say-no-probiotics-for-ibd-patients/ The suggestion for those that can't tolerate probiotics well is to start replenishing the gut with B infantis (the probiotic first passed to infants from the mother) and then work up adding other probiotic strains from there. I know your daughter has gut troubles, so perhaps starting gently reintroducing the proper flora might be the way to go. in March 2005, Gastroenterology journal published results of a human trial on 75 people with IBS, supplementing with 10 billion cfu of B. infantis, once per day in a malted milk drink. Now, Bifidobacterium infantis is, as the title suggests, a strain typically used for infants. But as Dr. Quigley and his colleagues note in their paper, the symptom relief achieved with B. infantis in the trial was comparable to that seen with Zelnorm (tegaserod) and Lotronex (alosetron) – two drugs used in the treatment of Irritable Bowel Syndrome.(14) B. Infantis is the predominant bacteria found in the bowel of healthy breastfed infants. As the infant begins to eat solid foods, the more ‘adult’ strains like B. bifidum come to dominate. However, what if you never had a healthy bacterial flora as an infant? Then maybe it would be best for you to start with what was missing from the very beginning and work up from there?

Our daughter's Asperger's dx , motor/vocal tic disorder, SPD dx have all resolved with treatment for a bartonella infection. All of her symptoms were caused by either the infection itself or by inflammation caused by release of bacterial endotoxins. We found that her body had trouble ridding itself of these endotoxins because of a MTHFR genetic deletion. Antibiotic treatment and supplements addressing her MTHFR deletion have given her back her life. Urinary frequency was also one of her symptoms. She was tested several times for UTI and always returned negative.

We had/have good luck using japanese knotweed as an anti-inflammatory. We used it during 2 years of abx treatment and are still using it with the herbal protocols DD is continuing on. It really does a good job of decreasing herx-produced brain inflammation. Are you familiar with the lyme herbalist Stephen Buhner? It's worth a look at his website. If your LLMD is rxing deplin he probably feels that MTHFR deletions are part of your detox problems. Deplin is often rx'ed at higher doses than are needed throwing the remaining MTHFR cycle out of whack. This could be contributing to your depression. I know our LLMD wanted DD to take large doses of l-methylfolate, P-5-P and methylB12, but I don't think she understood that overmethylation can be as bad as undermethylation. DD does well on smaller doses every other day. Lots of information to be found on MTHFR here on the forum. Try the search engine. Also, is your LLMD treating for any coinfections? Just curious because lyme doesn't often travel alone. Bartonella can be a major cause of depression.

We noticed this with DD as well. Things she had been able to do she no longer even attempted. The most obvious one to me was when she weaned herself at 16 months of age. Before her MMR at 15 months she was an avid nurser and had good use of many single words. At approx. 16 months she climbed in my lap to nurse, tried but was unsuccessful at latching on (I assume because of her loss of motor control), shook her head NO, and never attempted to nurse again. After this she also lost the single words she had been using consistently. I never understood this sudden weaning until I realized it was probably associated with her global loss of fine motor control.

You are right. It's hard to think about, but you have found the problem and are working on a solution. You will eventually give your son back his life. What really makes me sad is all the children who will never have a diagnosis, who will be dismissed by doctors, who will never get help because their parents don't have the chutzpa to keep inquiring. All of this takes time and heartache, but it has been a lesson to every one of us.

Glad you found something that works. It worked for DD's first 10 day round for strep, but then stopped working 1/2 way through the second 10 day round. All symptoms came roaring back. Of course this could have been a herx reaction I suppose, but throughout treatment she didn't do well with monotherapy. We had to use multiple abx to get any kind of improvement.

DD lost speech gradually after her 15 month MMR. Her speech wasn't highly developed, but she lost everything - for years - until we began speech therapy at age 3. Along with the loss of speech we also saw loss of fine motor control, spatial ability, and the development of toe-walking. Our SLP dx'ed oral apraxia, which is caused by a loss of motor control over facial muscles, so losing fine muscle control of the face seemed to go along with the loss of her ability to manipulate objects with her hands. DD was dx with Aspergers in Dec 2010 because of social/behavioural delays, sensory disorder and ADHD. Baby-talk was a dead giveaway for flares for her as well. Lying on her back on the ground, kicking arms and legs, and baby-talking to the dogs used to drive me nuts. On the up side, with treatment for her infections she has regained motor ability and lost her ADHD/motor delay/tic disorder/Aspergers diagnoses. She is still a little quirky about not interpreting sarcasm properly sometimes, but other than that is functioning normally.

Please consider purchasing Stephen Buhner's book on the mycoplasma and bartonella coinfections, especially because you know you are dealing with mycoplasma. Buhner's premise is that these bacteria act as parasites, removing nutrients that they need through tissue inflammation; and that the resulting destruction and nutritional deficiencies cause the symptoms our children are suffering. http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083 It's relatively cheap and gives a good overview of the effects of these infections. His suggestions on diet and herbal treatment are tremendous and can be used in conjunction with abx therapy.

Try and hang in there. You are a great Mom!