rowingmom

Our daughter's bone pain and PANS symptoms (including Tourette's-like motor/vocal ticcing and Asperger's-like behaviours) were the direct result of her Bartonella hensalae infection. Bartonella has an affinity for endothelial tissue and bone marrow. Infectious Disease doctors will treat by CDC guidelines. No more than approx. 1 month of probably a single antibiotic. Not at all useful for these types of infections. When the child is not cured by the short dosage they will claim that the problem is psychosomatic. They are so wrong. We had the same good response with a 10 day dosage of PenVK for strep throat. All symptoms, including bone pain, IBS, and Tourette's resolved, only to return within 4 days of abx withdrawl. A second prescription of PenVK was only effective for the first 5 days, after that symptoms returned even though DD was still taking the antibiotic.

Ah Ha. Varsity sports. Which ones? Our DS is also 18. Just graduated (yesterday - Yay!) with honours who plays/played significant amounts of sports, especially ones with pads (hockey, lacrosse). I have found that if he is slashed or hit on an area of his body where the pads/guards are in close contact (kidney pads, shoulder pads), that he will develop skin striations that look much like "stretch marks". When I first saw these I was in a total panic because, although positive for bartonella, DD has never had a stretch mark so I had nothing to compare with. I still don't. But after a while DS's marks fade and show up elsewhere - always associated with sports impact.

No. It's the same treatment, although having lived with this all of her life (chronically and not just acutely), DD's immune system may be more impacted than it would have otherwise been. The longer these children are sick, the longer their methylation/detox systems are compromised and the more toxins they build up in their bodies. The longer they are sick, the sicker they get.

"Stretch marks" are symptoms though... If the child was totally asymptomatic I would say don't treat and let the immune system function as it should. But the stretch marks are a sign of skin/endothelial involvement that the immune system is unable to resolve.

Our LLMD thinks DD's infections are congenital. She was born with light/sound/touch sensitivities and reacted to her 15 month MMR by developing apraxia and losing fine motor function. She had hypotonia and developed febrile seizues at 6 months. To me all of these symptoms point to an immune system and brain function that are under stress, as would be expected if she was dealing with the immune suppression caused by both lyme and bartonella.

With the improvements we have seen using Buhner's protocols I would suggest starting your DS on the bartonella herbs. The combination Buhner uses is synergistic and broadly antibacterial, but specific enough to target a bartonella infection. DD's remaining physical and mental bartonella symptoms (after 2 years of abx treatment) have resolved completely after 1 year on very low dosages (lower than those suggested below) of these herbs. 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 His book: Healing Lyme Disease Coinfections: Mycoplasma and Bartonella is very in depth and should be read by anyone dealing with bartonella.

You can't tell which coinfections are present from the Western Blot. The WB tests specifically for the presence of Borrelia antibodies. Your son is positive for kDa 39, 83-93 which are specific for lyme, indicating that he has been exposed to the Borrelia bacteria. You are right to investigate coinfections as lyme rarely travels alone. You should test for any of the coinfections that are common in your area. In the St Lawrence area I would at least test for bartonella and both babesias. Our LLMD tested for lyme, B microti, B duncani, ehrlichiosis, B henselae. We live in Niagara. Our veterinarian has a map showing the movement of RMSF into the St Lawrence area as well. This is not a link to the map (I couldn't find it) but does indicate that vets in the Kingston area are finding transmission of RMSF in animals. http://www.stlawrencevetservices.com/heartworm.htm DD returned very positive for B henselae, but negative for the babesias. Her best improvements in cognitive/executive function however, have been gained with antimalarial/antiprotozoan abx and herbal treatments. Just because our babesia tests returned negatively doesn't rule out infection by other untested protozoan parasites.

Bartonella and babesia are two infections usually associated with lyme and are often transmitted by ticks, so they are called coinfections. There are others; Rocky Mountain Spotted Fever, ehrlichia, anaplasmosis, tick relapsing fever, Q fever, Powassan encephalitis, tularemia. Most of these infections are transmitted by ticks, but some of them, including bartonella and babesia, do not require a tick bite for transmission. Exposure to cat saliva, and especially that of wild kittens who's immune systems have not matured sufficiently to deal with infection can cause transmission of bartonella. http://www.kentuckyindianalymesupport.org/2013/07/01/a-bartonella-guru-speaks-out/ http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf http://pediatrics.aappublications.org/content/121/5/e1413.long Babesia is a protozoan parasite that acts much like malaria. Transmission is generally stated to occur with tick bites, but many LLMDs feel that it can also be transferred during blood meals of other biting arthropods like mosquitoes, and the biting flies, which makes sense to me because the protozoan parasite malaria is transmitted in that fashion as well. It can also be transmitted through the blood supply. http://www.aldf.com/Babesiosis.shtml The presence of an EM rash (for lyme) or a bartonella rash is not necessarily a component of these infections. Our daughter tested positive for Bartonella hensalae but has never had an EM (lyme rash) or a typical bartonella rash. Where she got her infections from we don't know. Lyme, bartonella and babesia are all immune suppressive, opening the gate way to other bacteria or viruses that would normally not be problematic. DD was born with light/sound/touch sensitivities and things just went downhill from there. She reacted poorly to her MMR vaccinations, becoming apraxic and losing motor/executive function, which may have been the result of an improperly functioning immune system caused by her infections, which our LLMD feels are probably congenital. Her PANS symptoms (ticcing, urinary frequency, raging, loss of fine motor function, insomnia, social regression etc.) started in 2008, but her bartonella pain symptoms didn't start until 2 years later. DD's PANS symptoms resolved initially with bartonella abx treatment and are now resolving further with bartonella/babesia herbal treatment. Where her infections were acquired I may never know. I am treating myself with the same herbal protocols and recovering from my own symptoms indicative of bartonella. I have never been tested.

We are Canadian.

Your daughter's long list of symptoms are extremely similar to DD's. Her's have completely resolved with treatment. Every one of them. Please do not dismiss the possibility that her infections may have been acquired before the tick bite.

I have taken exemptions for both of our children. DD is fully vaccinated to grade 5, DS to grade 7, although for him I declined the meningococcal vax. Thank goodness the HPV vaccine wasn't included in DS's grade 7 shots as it was for DD's grade 7 class this year. Because the B strain is not included in any of the available meningitis vaccinations, I think an optimally functioning immune system would be imperative to avoid complications with that particular strain. Multiple vaccinations are not going to help DD's already compromised situation.

DD didn't herx too badly with biaxin/rifampin, even though bart was her major symptomatic infection. Tindamax was much worse.

I feel for you and your daughter. Three years ago we were just where you are now; not knowing where to turn for help. I think you have come to the right place. I am not a doctor so these are just my interpretations: lymph node involvement, night sweats and dizziness are symptoms of babesia, a streaky rash may be indicative of bartonella. Google bartonella rash to see if that is the one you are referring to. Both of these are common co-infections of lyme (ticks can carry many parasites and other bacteria), but may be stand-alone infections as well. These infections can be transmitted by biting arthropods including ticks, deer/sand/horse flies, mosquitoes, fleas and bedbugs. The babesias are protozoan parasites similar to malaria and the bartonellas are gram negative bacteria responsible for "cat scratch fever" and "trench fever". Both of these bacteria can cause significant veterinary disease as well. Our daughter had every symptom you list, including loss of fine (writing) and gross (walking, speech) motor skills. All this despite mostly "normal" blood test results. Her only positive test before treatment was for ANA (speckled type) which has since returned to normal. The rest of your daughter's symptoms are very specific for PANS/PANDAS. Her positive response to antibiotics, to me, seems to indicate infection. Our DD had the same positive reaction to PenVK for strep. ALL SYMPTOMS cleared while on it, only to return within 3 days of discontinuation. This was before I had ever heard of bartonella and babesia. I would suggest you look for a Lyme Literate Medical Doctor (LLMD) or Lyme Literate Naturopathic Doctor (LLND), preferably affiliated with ILADS (International Lyme and Associated Diseases Society). These doctors will treat based on clinical symptoms, realizing that present day testing is not infallible and doesn't necessarily test for the many subspecies of these bacteria that can be responsible for infection. They are also cognisant of the fact that proper immune function is required to resolve these infections, and that improper immune response can lead to chronic illness. They understand Tick Borne Diseases, unlike the IDSA (Infectious Disease Society of America). Hang in there.

Oh, there's more supplements. Those are just the herbals! I don't think any one herb is responsible for appetite suppression. Both DD and I are still taking all of them and our appetites have returned. I think it's probably linked to pre treatment infection and early treatment die-off.

I am treating myself with the same herbs that we are using for DD. Buhner's full bartonella protocol: Sida acuta, houttuynia, Japanese knotweed, hawthorne, milk thistle, cordyceps, drinking green tea several times daily for ECGC. We have omitted l-arginine because I can't rule out viruses. We added the CSA combination tincture in Nov and are now also using very low dose (2 drops TID) cilantro tincture along with tinctures of ginger and turmeric - and don't forget the probiotics 2 hours removed from the antimicrobials! Buhner's associate wants us to start red root (for lymph drainage) and bidens (another broadly acting antimicrobial), which are part of his babesia protocol.

Before and during probably the first 6-8 months of treatment for bartonella, DD didn't eat much. I put it down to her ADHD - that something would distract her from eating and in following the distraction she would forget to eat. Lunches would frequently come back uneaten from school. While she was in the earlier grades I tried to make sure that her teachers would redirect her back to eating, and in the later grades (when there wasn't as much supervision during lunch periods) she was placed in a remedial class and prompted to eat by the EAs there. OCD was not an issue, she never had problems with texture or taste. She simply couldn't be bothered to eat, but also never complained of hunger. For a couple of years she wore the same clothes and didn't really outgrow anything. Now she is still a little behind her peers, but has really grown significantly. When we weaned DD from abx, I began treating myself with the same bartonella herbal protocol and I noticed that my appetite waned for approx. 12 months. Now has come roaring back . Rats.

Our LLMD prescribed lumbrokinase (Bolouke) throughout DD's abx treatment. Since switching to herbals we now use serrapeptase. Both of these were dosed in the am. 45 minutes before her other supplements/abx/herbs and breakfast.

Isn't it crazy how inflammation and infection can mess with our children's brains? I am so glad that you have found some respite and healing!.

Stephen Buhner suggests that almost everyone has been exposed to mycoplasma pneumonia, and that it passes through the general population every few years.

Our daughter's ASD diagnosis has also been withdrawn after 2 years of abx treatment for bartonella and now herbal treatment for bartonella/babesia-like-organisms (she tested negative for both B microti and B duncani). The impact of infection on brain function is completely under-estimated by mainstream medicine. Our doctor was an ILADS trained LLMD. She informed me of the association of bartonella infection with PANS reactions and assured me that DD's PANS symptoms would resolve with treatment for infections. They have.

DD had a similar response to Bactrim. It was making her very uncomfortable. Several days later she developed an allergic urticaria (hives) and had to be switched to biaxin. Keep an eye out for allergic reaction.

DD's OCD symptoms were thankfully very mild. They consisted only of drawings of stick-figure girls with their hands held in awkward positions (Egyptian hieroglyphics-like). These pictures would cover her school work, school agenda, homework and any other plain piece of paper lying around the house. Before abx and during the first year of bartonella treatment her handwriting was very primitive and these pictures covered everything. She knew she should be working on assignments, but was forced to draw these pictures every chance she got. I did notice the amount of drawing increased during herxes resulting from changes and increased dosages of bartonella abx. By the time abx treatment was discontinued, the pictures were few and far between, and the handwriting much improved. The only time I have seen the pictures show up since beginning herbal protocols was during a yeast infection resulting from a lack of probiotics. With one 500mg tablet of diflucan and an increased probiotic regimen the OCD has resolved again along with the yeast.

Here is a link to another discussion about methylfolate / deplin: http://latitudes.org/forums/index.php?showtopic=21862&hl=deplin

The herbal anti-microbials we are using are broad-spectrum enough that I am no longer compelled to test. You find out what you are treating by the reactions to the herbs, and let that be your guide.

If you are taking any kind of abx you need to be restoring good gut bacteria. They help to crowd out the pathogenic ones. These days everyone needs to be replenishing their gut bacteria with probiotics and/or fermented vegetables. The reason: RoundUp negatively impacts your healthy gut bacteria. Glyphosate’s Suppression of Cytochrome P450 Enzymes and Amino Acid Biosynthesis by the Gut Microbiome: Pathways to Modern Diseases http://www.mdpi.com/1099-4300/15/4/1416 Glyphosate, pathways to modern diseases II: Celiac sprue and gluten intolerance http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf From Moms Across America http://www.momsacrossamerica.com/blog : Glyphosate is a patented ANTIBIOTIC. It destroys gut bacteria, where 70% of our immune system lies. We submit that this directly correlates with Crohn's disease (damaged gut)which has increased 79% in the past ten years alone in children admitted to hospitals. Colitis (stomach ulcers) has tripled during this time as well. Allergies, autism, auto immune and asthma now impacts 1 out of 3 of our children. It is an acknowledged endocrine disruptor, causing birth defects, infertility and sterility. The USA is currently #1 in the industrialzed world for infant death on day one. We have 50% more infants die on their first day of life than all of the industrialzed world combined. This directly correlates with pigs who ate GMO/Glyphosate sprayed feed and lost 30% of their young. Those sows with levels of glyphosate 3 X LOWER than our mom's levels in their breast milk, had 5 X HIGHER birth defects, miscarriages and loss of young. Glyphosate BREAKS DOWN THE BLOOD BRAN BARRIER: allowing toxins into the brain. Someone dies of Alzheimer's every 67 seconds in America today. In 20 years from now, 1 out of 2 of our children will have autism if we continue at this rate. Glyphosate is a CHELATOR: It holds or "makes unavailable" the vital nutrients of any living thing. Vitamin deficiency is consistent in cancer patients. Cancer is now the number on killer of American children today. More children die every year of cancer than all the casualties of 9/11. 1 out of 2 males and 1 out of 3 females are expected to get cancer in America. Over 117 million Americans have cancer. If you check their website they have references for all of this information.