rowingmom

Do you think the anorexia was a herx or an adverse reaction to Bactrim? DD13 developed an allergy to Bactrim 1 week into treatment with it, and we had to switch to Biaxin. DD never had problems with anorexia. I'm glad you found the cause for that specific problem. Hang in there, you are doing a good job, Mom!

I just came across this article on the use of the ubiquinol vs the ubiquinone version of CoQ10 on heart failure. http://www.lef.org/magazine/mag2008/feb2008_Conventional-CoQ10-Fails-Severe-Heart-Disease-Patients_01.htm

Beautiful!

Cat's claw is an immune stimulant and if you are dealing with lyme, overstimulation of the immune system can cause an increase in symptoms. I tried cat's claw myself several years ago, when lyme had just entered my radar and I hadn't yet used any antimicrobial herbs to decrease load. The results were not good. After several days I developed arthritic-like pains in my elbows and knees, and my skin became very sensitive to touch (felt like I was being flicked with an elastic band and the sensation would linger). On his website and in his more up to date books, Stephen Buhner recommends Japanese knotweed first and foremost as an anti-inflammatory and anti-spirochetal agent. It's a very good herb and we have been using it for several years now at the dosage of 1/4 tsp of powdered herb (1stChineseHerbs) infused as tea 3x daily, along with 1/4 tsp tincture (WoodLandEssence) 3x daily. We used this herb throughout abx treatment for lyme/bart. To more gently support the immune system Buhner recommends cordyceps powder (1stChineseHerbs). We use 1/3 tsp of this infused in tea (the same cup with the knotweed) 3x daily.

Just my 2 cents, from what I have gathered while I have been here: If the prophylactic abx is sufficient to address whatever infection is causing PANS/PANDAS, then you will see resolution. If there is multiple infection involvement then 1 abx may not be sufficient, especially if the infections are of different types (intracellular, extracellular, or cyst formers) and more comprehensive treatment will be required. A couple years back, quite a few people in the lyme community jumped on the IVIG wagon and seemed to find some short term resolution of symptoms. However improvement was often not lasting. I would imagine because any remaining infection would continue to produce the problematic antibody response.

My suggestion is that if your son is positive for lyme (have you tested for coinfections?), that your daughter be tested as well. DD13's leg pain (actually the shins and the long bones in her arms as well) and stomach pain (often severe enough to cause her to sit down) and PANS symptoms were caused by a bartonella hensalae infection. Pain in the large muscles of the legs can be indicative of babesia infection.

DD's ticcing morphed frequently, but one generally lasted for several weeks before gradually giving over to another. When ticcing was bad we would commonly see more than one at a time and at this point vocals would often develop. DD's motor ticcing has included: shoulder shrugging, eye blinking, eye rolling, elbow pumping, hair flipping, neck stretching, mouth stretching, hand smelling, tongue protrusion. DD's vocal ticcing has included: tongue clicking, throat clearing, squeeling, nose blowing, coughing. I tell you this not to scare you, but to show you that all of this is very common and symptomatic of PANS/PANDAS. When you properly address the infection and it's related inflammation the ticcing will improve. For us, ticcing means there is a buildup of toxins in the body. Any type of antibiotic treatment that killed off DD's bartonella infection resulted in increased ticcing and other physical symptoms of a herxheimer reaction. She also tics when exposed to mold toxins or has a yeast infection.

If she just started antibiotics for bartonella she could be having a die-off reaction. Bartonella and it's endotoxins can cause significant psych/neuro disorders. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf I would try decreasing/stopping the abx, increasing anti-inflammatories (Japanese knotweed tincture, curcumin) and increasing detox protocols (lemon juice/stevia in water to drink, magnesium citrate supplementation, vit c supplementation, psyllium husk, Epsom salt baths if she can stand sulfate)

DD13 is doing wonderfully! Three years ago I would not have believed that she could improve to the extent she has. She has lost all cognitive/executive impairments and her Tourette's is only suggestible (if I ask if she needs to tic she will have to - motor only, no vocals), and not otherwise visible. Going back to school has not resulted in any sort of relapse. We were at the cottage this weekend and without me asking she got out her homework (Grade 8) and reviewed (reworked) 30 math questions for a test that she has today. She packed the homework herself, got it up to the cottage and took full responsibility for studying. She worked for at least 3 hours. Neat and tidy writing, organized work area. At dinner time she admitted that she was having trouble with one question, but that she felt after dinner when she had had a break that she would figure it out - and she did. No screaming or crying. No throwing things or raging. Absolutely no frustration; just confidence. It was truly amazing! This was a child that 3 years ago (Grade 5) I had to physically dress, brush teeth, tie shoes, pack backpack, pick up homework from school and work through unfinished school work/homework one on one because of ADD. She had an IEP and the help of the classroom EA. She sat behind a screen and wore ear plugs to decrease distraction. She was removed from the classroom for testing and had an EA sit with her to redirect her attention. She had an EA or another student go to the bathroom with her because she would become distracted and forget to go back to class. She had to eat lunch in the special needs classroom so the teacher there could redirect her to eating; otherwise her lunch would return uneaten. Her printing was huge and messy and her books covered with doodled pictures (the same one over and over - her OCD). She raged, she screamed, she hit, she was socially withdrawn and regressed. She was so fatigued, dizzy and in so much pain that she had to sit out of gym class, or sit on the curb watching the neighbourhood children play. She had Tourette's so badly at times that she couldn't read because of head snapping/bobbing/eye rolling, and often couldn't give presentations in class because her vocals were so bad. A couple of times her Grade 6 teacher would recount this to me and cry, she felt so sorry for our daughter. Her improvement has been nothing short of a miracle. We are maintaining low doses of Buhner's bartonella protocol (minus l-arginine), I am still messing about with the babesia herbs. Both DD and I are reacting very strongly to bidens (1 drop 3x daily) (which Buhner says is not supposed to be as potent as cryptolepis), with brain herxes (dizziness, brain fog), but with the help of Julie McIntyre we are still seeing improvement. One thing that I found to be a surprise was Julie's recommendation of cilantro/zeolite for detox. I put off using cilantro for about 8 months. One because I thought it was baloney (you'd think I'd know better by now), and two because I couldn't find an organic source. Well I found an organic tincture source, and as soon as I started using it (1 drop 3x daily) our daughter's remaining symptoms declined noticeably (that is, even my husband noticed). I messed about and ended up being too enthusiastic (10 drops 3x daily) which resulted in a yeast infection (googling revealed that the gut may overgrow yeast to protect the body from too many metals being dumped into the intestine at once). Instead of using zeolite we are using Diatomaceous Earth; we may switch to zeolite (which Julie swears by, and she hasn't led us astray yet - except for dosages which are very tricky for us (we find 1/4 of recommended dosage to be best). The amazing thing is that during a recent trip which entailed a week's stay in a "free wireless" hotel (meaning wireless is EVERYWHERE) both our daughter and I were unaffected by the EMF's. We are usually quite electrosensitive. Previous trips to wireless available buildings (museums, hotels, restaurants, malls etc.) generally resulted in an increase in symptoms for our daughter (especially ticcing, fatigue and headache to the point of having to sit down and rest) and palpitations/anxiety for me. I was not looking forward to staying in the hotel, and neither was our daughter, but after our first night there we realized that we weren't being impacted to the extent that we had been. We actually slept like logs! Cilantro and clays are used in many natural metal detox remedies; and it would make sense that removing metal burden from the body would decrease reaction to electromagnetic frequencies. No child should have to suffer the pain, fatigue and cognitive dysfunction that DD has had to endure, but I have learned so much from this journey: That mainstream medicine may not be the be-all, end-all. That bacteria are not the only problem, that compromised immune/detoxification systems are responsible for symptoms as well. That our children are being poisoned by the pesticides in their food (big agriculture) and by the metals/adjuvants in the 70 (!) vaccines now recommended by experts (mainstream medicine / big pharmaceutical companies). No large corporations/conglomerations are ever again going to tell me what is best for me or my family. Although in the past I would have considered myself nuts to even suggest this to anyone else (let alone believe it myself), I now read several alternative health sites: http://www.thehealthyhomeeconomist.com/ http://www.mercola.com/ http://www.greenmedinfo.com/gmi-blogs http://www.chrisbeatcancer.com/ http://www.i-sis.org.uk/index.php http://www.ageofautism.com/ http://www.momsacrossamerica.com/blog

Please test for bartonella, the babesias and other common coinfections first.

I would think that if you are dealing with chronic infection / yeast / mold, no amount of removing children from external sources will help. It may cut down on flares, but the underlying problem will still exist.

No car sickness here, but before malarone/cryptolepis DD could not stop moving. She craved motion and would swing, jump, hang up-side-down constantly. The first time I saw it all stop was the day after she started malarone. She was just sitting quietly looking out the window. It was so different from her usual behaviour I was amazed. She has never described her thoughts as racing though. Just her body had to keep moving.

DD didn't manifest physical symptoms of bartonella until 2.5 years after her PANS symptoms started, and that included the motor/vocal ticcing. Bradstreet is up on mold. He has to be. We didn't do 23andMe, just tested for the regular MTHFR things through Lab Corp, and we didn't supplement great amounts of methylated B's either. Just low doses every other day or so (except for B12 which was every day), and make sure you are not getting the unmethylated synthetic versions in prepared foods, poor multivitamins etc.. These can cause problems as well. You can get just as messed up over-methylating as under-methylating; check out LLM's posts on over- supplementation.

You have tested for bartonella and mold, correct? For DD, ticcing is highly associated with bartonella die-off and the presence of mold (externally) and yeast (internally).

We have a success story: In our case, our 13 year old daughter's lyme/bartonella infections were the cause of her PANS/PANDAS symptoms. The Tourette's and minor OCD symptoms were mostly the result of die-off toxins produced by bartonella, and we saw flares in these symptoms with abx treatment. For her, toxin build-up (especially bartonella toxins and yeast/mold toxins) lead to motor/vocal ticcing. Detoxing (oral magnesium citrate, Epsom salt baths, frequent lemon juice/stevia in water, soluble fiber supplementation, vitamin c to bowel tolerance), and the use of anti-inflammatories (Japanese knotweed, curcumin) decreased the flares. We have found most of the improvement in her Asperger's symptoms (behavioural regression, cognitive/executive function impairment) resulted from herbal treatment for protozoan infection, although she tested negative for the babesias through Igenex. I initially observed a good response to malarone, but the response to Buhner’s herbal combination for babesia (cryptolepis/sida/alchornea) has been far more impressive. Our pediatric psychologist had initially diagnosed our daughter with Tourette's, Aspergers, ADHD, motor delay and then PANDAS (Pediatric Autoimmune Neurological Disease Associated with Strep) because her symptoms would escalate during strep infections, while our LLMD diagnosed her with PANS (Pediatric Autoimmune Neurological Syndrome) which is essentially the same symptomology but is caused by other types of infection, in our case bartonella. There is a long list of symptoms associated with PANS/PANDAS and our daughter had every one of them. More information can be found here: http://pandasnetwork.org/pans/ We never did do the PEX (plasma exchange) or IVIG (intravenous immunoglobulin) treatments suggested on the above site. We are Canadian and IVIG is not available here except for severely compromised individuals, and our daughter was still functioning well enough to attend school (although with an IEP and EA and many considerations). We did not have the money to attempt treatment out-of-pocket in the US (other than with abx prescribed by a LLMD). Fortunately our LLMD was a good one who assured me that the PANS symptoms would resolve with treatment and they have. They have actually improved considerably more with herbal treatments then they did with abx. A recent trip back to the pediatric psychologist was a great one. She was flabbergasted that her previous diagnoses of Asperger's, Tourette's and motor delay were no longer applicable. We remain on the low-dose herbal protocols for bartonella and babesia and I am still trying to increase herbal dosages to address protozoa. Bartonella is a very common cause of neurological/psychological symptoms, and although most doctors don't realize this fact many veterinarians do. http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf After everything we have been though I feel that symptomatic disease has little to do with the presence of infective organisms and much more to do with the competence of the immune system which is impacted greatly by toxin load (pesticides, heavy metal vaccination adjuvants), and the body's ability to excrete those toxins. http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx http://www.ageofautism.com/2014/04/pesticides-and-the-age-of-polio.html http://www.mdpi.com/1099-4300/15/4/1416 http://nhrighttoknowgmo.org/BreakingNews/Glyphosate_II_Samsel-Seneff.pdf We are being poisoned by pesticides and the ever increasing amounts of glyphosate poured onto GMO foods. Pesticides preferentially destroy good gut bacteria resulting in overgrowth of pathogenic species and the development of leaky gut. This allows foreign proteins to escape into the blood stream, resulting in autoimmune and allergic conditions. Our children are being impacted by the adjuvants in the 70+ vaccinations now required. Something has to give and it is our immune competence and our health. We try to eat non-GMO and organic as much as possible (conventional grains and legumes are sprayed both during growth to address pests and before harvest to facilitate desiccation - if it doesn't say ORGANIC it isn't), and I have taken out vaccination exemptions for both of our children (our 18 year old is neurotypical and asymptomatic). We use wired phones and computers to further decrease electrical stressors; after all, our nervous systems and hearts function through changes in electrical potential. DD's timeline and more specific symptomology is listed in my signature.

We take all antimicrobial herbs at least 2 hours away from bacterial probiotics. You may not have to do this with the yeast probiotics (saccharomyces sp.) though. Thanks for the links Mayzoo. I hadn't come across them and just separated herbs from probiotics because I thought I should. I see in the one link that cryptolepis might be the exception to the rule that herbs are generally easier on gut microflora - and it is. After a couple months using 5 drops BID of cryptolepis and only replenishing good bacteria with fermented vegetables we ended up having to go back to the full dosages of probiotics that we had been using with abx because of yeast overgrowth. We hadn't had a yeast problem for the whole year before that while the protocol didn't include cryptolepis. @ teamtyrion - Buhner says that using antimicrobial herbs along with abx can actually help. While abx only address infection via one biological route because they are composed of a single constituent (monotherapy), antimicrobial herbs have multiple constituents, attacking infection via different routes which can be more efficacious. Just be careful to only use low doses of herbs while taking abx. The antimicrobial herbs can act synergistically resulting in greater die-off than could be expected using either abx or herbs alone. This applies to the use of multiple herbs as well, but not as much for the anti-inflammatory herbs (Japanese knotweed, turmeric etc).

Rage, terror and a low threshold for frustration is a problem for many of the children here. I would rather not rehash those days, but if you search the archives you will find many examples and some good references to help you and your child cope. Rage can be a major symptom for many with bartonellosis. Bartonella was the cause of our child's PANS reactions - all of them listed in my signiture.

If you PM me with your e-mail address, I can give you a copy of our daughter's Excel chart to use as a template.

Our PCP had the same reaction, even after I showed him the Igenex results (positive for bartonella and IND for lyme). He said that DD's pain symptoms - which I now know are highly specific for bartonella - were the result of a child who did not want to attend school and was just making it all up. That she had fooled me into thinking she was sick. That she should be spanked, given klonopin and ritalin and sent to school. When I refused the drugs he had prescribed he sat me down and told me that I was a bad mother. That our daughter would not be able to function without them and that I was depriving her of the opportunity to succeed. This doctor was the President of the Ontario College of Physicians and Surgeons and has been our family doctor for over 30 years. He offered to send me to an ID doctor, but I declined. I thought I would find only more of the same if I continued to seek help through the mainstream medical community. I knew in my heart that if I searched long enough I would find the cause of DD's symptoms and a way to help her. It is scary to take responsibility for your child's health, but I was the only one willing to do so. What a trip it has been!

A link to an article discussing Seneff's findings on the interaction of metals used as adjuvants in vaccines, glyphosate (RoundUp) and low sulphate intake: http://articles.mercola.com/sites/articles/archive/2014/05/08/heavy-metals-glyphosate-health-effects.aspx Glyphosate and aluminum can be viewed as "partners in crime," working synergistically with one another. This partnership plays out in several ways: 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. Roundup® is the number one herbicide in use in the US and, increasingly, around the world. Unfortunately, its use has increased further in lockstep with "Roundup-Ready" genetically engineered crops, including genetically modified (GM) mainstay crops such as soy and corn. Taken together, the body of evidence elegantly assembled by Dr. Seneff supports her hypothesis that the epidemic levels of autism (and other diseases such as Alzheimer's disease) currently seen in the Western world are caused by a severe deficiency in sulfate supplies to the brain. Under optimal circumstances, the pineal gland can synthesize sulfate stimulated by sunlight and deliver it via melatonin sulfate to the brain. However, aluminum, mercury, and glyphosate are working synergistically to derail this process, and sunlight deficiency (exacerbated by the misguided use of sunscreens containing aluminum nanoparticles) is further contributing to the pathology.

The treatment you are referring to is pretty alternative, and wouldn't be on my radar except for the fact that many who try years of abx treatment finally find healing with the more alternative protocols (ie herbal ). I have purchased a near-infrared sauna for DD (the wavelengths are similar to those used in cold laser therapy) because of the NASA research concluding that these wavelengths are beneficial to mitochondrial function. We will start using it this winter as DD is now well into puberty and can now probably handle the increased body temperatures. Often the cold laser protocols use homeopathic remedies as well, transferring the energy imprint from the remedy directly into the bloodstream, travelling on the wavelength of the laser. Not sure I can wrap my head around that one, but a positive response would be interesting. Could you message me with the name/address of your chiropractor? I would be interested in following up with him/her.

DD12 has suffered from bartonella foot pain and it is not the same thing you are describing, although it does sound very much like the planters fasciitis that I suffered from myself a couple of years ago. Bartonella pain covers the whole bottom of the foot and is very distinctive for DD. We did a lot of walking (6 hours the day before yesterday) in the hills of Quebec City and toward the end of the day DD was complaining of foot pain, although she said it was on the balls of her feet and wasn't the bart pain she had been used to - she has never complained of heel pain. I would imagine lyme and its associated tendon/cartilaginous tissue deterioration may be one cause for planter fasciitis. DD12 had NO SHIN PAIN. If we had done this last summer or definitely the summer before I would have been carrying her or would have been pushing her in a wheel chair. Planters fasciitis is usually mid-heel and a bit to the outside, where the Achilles tendon attaches to the bone. I found Achilles stretches (and calf raises which strengthen the tendon and need to be done daily after the pain has subsided) helped, but I still wasn't able to do distance walking with our dogs without an insert in my sneakers. Most good sports stores sell the inserts and I was fit for mine at one. After 6 months or so of using the insert and doing the calf strengthening exercises a couple of times a week, the inserts were no longer needed. I sympathise with your daughter. The pain can be excruciating.

This was posted on another forum and I thought it relevant to our story, and perhaps to those of others here. DD's major downturns have both coincided with MMR vaccinations. http://sanevax.org/gardasil-decision-will-always-regret/ Thanks "surprise"!

It's so traumatic the things our kids go through. I am glad he's feeling better. DD got so used to being in pain that now she actually marvels at what she can do without it. She kept up with me cycling today at 16-18 mph and said she feels super strong. I have waited a long time to hear those words.

I'm so sorry. Often with die-off you will find the lymph nodes swelling because toxins/dead bacteria can't be flushed through fast enough. There are a lot of lymph nodes in the groin area. Only my guess. I'm glad you have taken him to the hospital. I hope he is OK.