rowingmom

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.

Getting vaccinated is a personal choice and it needs to be based on what you think is best for your own child; obviously a parent is going to prioritize her/his own child above the potential future welfare of other people.
 
I'm sure Thundersweet chose to include that information about vaccinations in order to get informed responses, not to be judged.
 
Thundersweet, we use Ultimate Flora (50 billion) but a word of caution: start slowly! Sprinkle just a bit in his drink/smoothie and then add a bit more everyday. Look for rashes on the body, which may be a good thing (herxing from bad bacteria die-off). Try giving epsom salt baths to help with detox too. Another word of caution: start with small amount of epsom salt and work up. Some kids have a sulfur intolerance and epsom salt baths are really magnesium sulfate (hence contain sulfur).
 
Consider also oral magnesium (citrate form is probably the best) - check chemar's signature for "treatments that have helped my son" and you will see all the recommendations.

Your length of treatment and his inability to attend school after 3 years of treatment makes me think there is something else there...
 
Have thoroughly ruled out mold? Has he been treated for parasites including Babesia? Have you recently rechecked IgG subclasses? Heavy metals?
 
I can appreciate your frustration and sadness over the disease but also know you will keep trudging along. It's probably time to look a little further for the cause of continuing symptoms.

Wow. Thanks for the link and the story. I will never again blithely consent to vaccines for my DS or myself. I made that decision several years ago, but it becomes further enforced and validated by stories such as this. I continue to be appalled at the medical community that turns its collective back on this sort of experiential evidence, "clinical trials" be damned. It's absolutely maddening.

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.
 

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.

My son was 18 and started getting pain in the groin area. He ended up having to have Varicocele surgery. Seems the veins above one of his testicles were getting kind of knotted and causing the pain. The pain was above the scrotum, on the right side. It was not horrible pain, but uncomfortable. Just wanted to mention that in case anyone else was bothered by pain there. Our son was diagnosed by a urologist who did the surgery.

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.

We had an excellent experience with a low dose compounded version of it from Hopkinson pharmacy. In one week it took away my daughters arthritis pain that had lasted a year and a half, before which nothing had worked

I think the present thought in the Lyme Literate community is that doxy simply drives the spirochetes into cyst form.
 
Symptom resolution occurs at this point, but spirochetes can remerge from the cysts causing relapse. This is why antibiotics that address all three forms; the cystic form, the acellular form and the spirochete form, need to be used.

I think the present thought in the Lyme Literate community is that doxy simply drives the spirochetes into cyst form.
 
Symptom resolution occurs at this point, but spirochetes can remerge from the cysts causing relapse. This is why antibiotics that address all three forms; the cystic form, the acellular form and the spirochete form, need to be used.

DS10 has had PANS for 5 or more years. In the 5 years, this is the first time that I have seen him 98% tic free, urinary frequency free, OCD free and anxiety free. It has been a long, long time since I have seen him so relaxed. That being said, he normally backslides when school starts in the fall. So Fingers are crossed. To me the big change has been finding the source of the infection. He had been on a daily dose of azithromycin, and it was making his PANS manageable, but he still had urinary frequency and tics indicating an underlying infection. So thanks to this forum and the kind parents who answered my call for help, I got contact information for an integrative doctor that suggested that my son had Lyme. IGENEX testing confirmed the suspicion and answered the riddle as to why he kept getting viruses. DS10 is 8 months into Lyme treatment, off abx and progressing. Treatment now consists of herbal abx and supplements.

It did not say Igenex came back negative. Waiting on Igenex testing that Dr. B had the knowledge and experience to order. AND once Igenex test is back, it must be looked at closely to see which bands are reactive.
 
To OP: please make sure you have your own copies of EVERY test that has been run by Dr. T's office-
we all need to make sure we have copies, and look them over, too.

We never did travel down the PANDAS (strep) path, even though DD's first major exacerbation was caused by a strep infection.
 
When we discovered that along with a couple of positive lyme-specific Igenex WB bands, DD was highly positive for bartonella (one of the lyme coinfections that can be a stand-alone infection as well), our LLMD told us that when we had successfully treated bartonella her PANS symptoms would resolve.
 
They have. Like LLM said, a long road to recovery, but DD has no permanent damage, and has recovered from her diagnoses of Tourette's, Aspergers and motor delay. Her recovery has been beyond my expectations.

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.

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 HAD to go get a medical exemption for my son. We live in one of only two states that does not allow for either a religious or philosophical exemption and the ONLY way out of the vaccines was by way of a legal medical exemption. Not only did I have to get a letter from our doctor, I then had to take it to some state official (who was not medically qualified to do the job). He then had to approve it and provide the school the necessary forms to allow my son to start school. This is also a small private school. The state lost the first approved copy then I had to re-file everything all over again... This was pure incompetence. Be thankful you live in a state you can make this choice yourself.

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.

Thanks everyone... This is still so exciting!!! Yesterday she ate a kid's Subway sandwich and almost ate the whole thing!!! And then I took her to the store (to get more if the chocolate cake!) and you should've seen her.... "I want this" "I want to try that" -- I had to drag her out of there!!!! What music to my tired ears! <3 I was really starting to think this was never going to happen.... I was truly losing hope. In fact, Friday night I had a bit if a breakdown
 
Keep the faith everyone. I know it's hard-- believe me. I am so thankful to everyone on this board

Our DD who had more Lyme induced ASD symptoms than traditional PANS symptoms but developed OCD on two noted occasions. One time when we rotated antibiotics she developed OCD as a die off symptom that resolved fairly quickly - two months (bartonella). Second time was when a tree fell on our house and we had a plume of debris come through that included mold/asbestos/lead. The second time the OCD hung around for at least six months and is trending better and better as we detox her for these environmental toxins. Her speech has improved and regressed with herx's and exposures to new infections/toxin's as well. Slurring, stuttering, inability to pronounce certain words correctly that were previously fine, baby talk, age regression, increase in non-verbal communication.
 
Our kids are not fully related to each other or me (product of donor egg) but were carried in-utero by me. All the kids have had some type of OCD at one point or another and a similar degree of other symptoms. I strongly come from the position that this is predominately a environmental issue and perhaps there is some genetic switching that occurs due to those environmental issues. For example, all the kids have gluten sensitivities and antibodies for Celiac's for us this seems to be more of a mold issue than a genetic issue.
 
Unloading their immune system of 'whatever' issue we uncovered has brought us towards recovery. It has been an extremely slow process. It was way more than just strep.... we truly had it all. We have done many off label treatments that have helped in various ways. We are hopeful for all our kids futures.
 
Keep treating with whatever works for your son. I think the most difficult aspect of treatment has been seeing them herx for extended period of time 'worse before better'. We have learned to truly understand herx's and strategically plan around them.

A herx is usually an increase of existing symptoms, although you may also find new symptoms popping up. The only way to tell if it is a herx is to decrease dosage, as you have done, and increase detoxing.
 
If symptoms resolve it was a herx; if symptoms continue to escalate you are having a relapse.
 
If, as you think, this is a new tic, that's entirely possible - tics do morph. If he is biting out of anger he may be dealing with increased brain inflammation and anti-inflammatories may help. We use OrangeNaturals (Canadian made) turmeric tincture as well as Meriva turmeric and Japanese knotweed.
 
For DD ticcing is related to bartonella toxins produced by antimicrobial induced die-off as well as yeast/mold toxins (this includes internal candida yeast). Oregano oil is broadly antimicrobial so it could be impacting the gut flora. Make sure you are giving sufficient probiotics.
 
Biocidin looks like a good product. I will have to investigate as we are taking many of those herbs individually. I would only be leery of the white willow for children.

Happy news and I had to share-- I'm bursting at the seams!!!! Last night dd started eating! 2 pieces of bread, 2 pieces of cake, 2 cookies (even had chocolate chips in them!), a Popsicle, and then a personal sized homemade pizza- ate almost the whole thing!!! This is the most she's eaten since NOVEMBER!!!!!! And she had cake for breakfast this morning, and was asking for more pizza!!!!!!
 
I sure hope this continues. I am so thankful for this victory. It's probably hard for someone who's never experienced this how f@)$&@;king happy someone could be to see someone do something so "simple" as eating!!! I'm ecstatic!
 
Day 12 minocycline.... Coincidence? I think not!!!! Each time she's tried a new abx she's seen improvement at approx 2 weeks, but this is the first time eating has happened!!! I'm sure the CBT has helped (well, maybe, I'm not exactly SURE about that) but I don't think therapy made her suddenly pig out like that. That was too sudden for response to exposure therapy in my opinion. Whatever it is, I'm thankful. And I'll keep doing everything we're doing and hope and pray this progress continues!!!!

Like you, we started introducing antimicrobial herbs into our abx mix before we weaned abx. We started with knotweed (1/4 tsp tincture TID) and raw garlic, and then added sida acuta (1/4 tsp tincture BID). It wasn't until after we had weaned that I started adding the other bart-specific herbs. We saw no increase in symptoms related to abx weaning. They were all related to die-off caused by introduction of herbs.
 
When we weaned DD was pulsing minocycline, azithromycin, plaquinel, malarone and tindamax 3 days on 4 days off. To wean we discontinued one antibiotic each week until we were left with only azith (250mg QD). The next week I started increasing/adding herbs.
 
One week after we weaned I increased sida to 1/4 tsp TID (which produced a ticcing flare which decreased within 2 weeks) and then 1 week after I added 1/8 tsp houttuynia QD, increasing houttuynia by 1/8 QD every week.
 
Looking back, my dosage of sida was too high. 1/4 tsp = 32 drops, and I was giving that TID. At the moment we are only using 15 drops TID. One of the side effects of sida for us (both DD and I because I am taking an identical protocol) was hair loss. It is a good broadly acting antimicrobial though.
 
Please be careful of trying to attain maximum recommended dosage. I tried this in the beginning. Knowing that houttuynia is used specifically for bartonella I really tried to reach the 1 tbsp. daily but herxing got too bad at 1/2 tsp TID - only 1/2 the recommended amount. Panic attacks and palpitations were the result for both DD and myself. When the panic attacks started I immediately stopped houttuynia and they resolved within 3 days. This is the only way to tell a herx from a relapse. I then resumed at lower dosages. We are now taking 1/4 tsp powdered herb infusion TID and are doing just fine. DD has no remaining bartonella symptoms. Long bone pain and headaches are just a memory.
 
Everyone is different and everyone's bacterial/viral loads are different. What works for one may bring on massive herxing for another. You will not be able to tell the difference between herxing and relapse unless symptoms decline with decreased dosages and increased detoxing protocols.
 
Please don't try too much at once. Nothing good will come of it.

You are properly addressing any methylation difficulties and using detox strategies, right?