Daughter's Update: Buhner's bartonella/babesia protocols

[rowingmom]

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 She raged, she screamed, she hit, she was socially withdrawn and regressed.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

Edited September 8, 2014 by rowingmom

[SSS]

Amazing!! I love your posts! :-)

[sf_mom]

Love your update!

 

We are also using Diatomaceous Earth for more than one reason: Absorption, Parasites, Metals

[cara615]

YES!! I love this update. Love it! We have been doing Bentonite clay baths to pull out metals and deposit minerals, wondering if I should give something internally....

 

DS does not have a metals issue but whenever I give him the clay bath his symptoms lessen the next day.

[chubbermommy]

rowingmom, I'm so happy for you and DD. You are always so helpful and insightful in your posts, thank you for sharing your experiences and knowledge. :)

Edited September 10, 2014 by chubbermommy

[frikfrak]

Thanks for the update, this is wonderful news.

 

Gives us all hope.

[HopeinHIM]

Hi,

I was so happy to read your update. My son is in 5th grade and nuero Bartonella. On azith/amox /Bactrim. 2months. Since we started we saw dramatic improvement. Very similar symptom's as your daughter. Once we began Artisiminine a month ago he was completely back to self!! (except cognitively) We started homeschooling and had a great first week. Felt like we were moving in great direction. I am supposed to increase this herb up to four a day as the weeks go by. I am at three a day and bam.. He cant get out of bed and crying with over the edge fatigue. I am not sure it's even that. I move so slowly on any increase. I usually take dbl time to increase anything with him. We are seeing dr Bouboulus and Dr tom Moorecroft in Connecticut. One is ND other Immunologist. My question....Is this herxing and should I stop all meds and supplement for a few days? Doctor B says go with your instinct. Push thru if you can. I am not sure!! I plan on a few more months on anti B and then going to herbalist as well.

[rowingmom]

If you are increasing dosages it is probably a herx to whatever you are increasing (sounds like artemisinin). Often now, as DD's infection load decreases, we are not seeing herx reactions for a week or more after a change in dosage. It is very important to modify only one herb/supplement/abx at a time.

 

I wouldn't push through. I would drop back to a lower dosage that wasn't creating a problem and just stay there. According to Buhner's associate, even low doses are helpful, if they are used continuously over a long period. If they are used in a multi-herb/abx protocol, there should be little likelihood of the development of bacterial resistance.

 

If he has been doing well with the other meds and supplements and is only reacting to the increase in the herb, I would keep the meds and other supplements going at your current dosages. They are obviously working.

 

When we began Buhner's protocols, I thought it was important to get to recommended dosages for all the herbs, but we weren't able to get to recommended dosages on anything other than Japanese knotweed. Anything over 1/4 of Buhner's suggestions wreaked havoc and wasn't worth it.

 

We continue at 1/4 dosage of all the various bartonella/babesia antimicrobial herbs - we are well into our second year of bartonella herbal treatment, and our 10th month of herbal babesia treatment - and are now completely asymptomatic.

 

I also mentioned on your other post that Buhner recommends artemesia/artemesinin only be used for short periods. Cryptolepis or the combination tincture CSA (cryptolepis/sida/alchornea) may be another option for longer term treatment.

 

If you would like a copy of DD's Excel symptom charts to see how she has reacted to the various herbal protocols, I will send them your way.

[vern_dave]

rowingmom. I'm new to the whole Lyme aspect of our DD's journey. We recently received her results from Igenix testing and tested positive (igenix) for lyme though neg for bartonella. We now think it's why she has not responded to the many interventions for the PANDAS dx we have been dealing with for over 2 yrs. Because of the sudden onset after a strep infection with a scarlet fever rash we are pretty sure PANDAS is in the mix and now Lyme. I have been reading the books by Buhner and am interested in his approach and protocols. My big concerne is if our DD will comply with taking the herbs/meds. After 2 yrs of taking meds that taste so nasty she is very oppositional. She just turned 11 and still does not take pills. Did you have to deal with this? Did the practitioner who helped you advise patients via skype? I'm just wanting my little girl back. Thank you...... David

[rowingmom]

Sorry, I can't help with the taste aversion. Our DD will take pretty much anything.

 

I used to joke with her that it was "frog juice", and that one day she might turn into a frog! But we didn't deal with much OCD or opposition, mostly ticcing and raging over frustration (involving her inabilities to accomplish things involving fine motor control, cognitive ability, attention etc.).

 

I am taking the herbal infusions and tinctures along with her, and have done so for the last 2 years, so that may help as well.

 

The herbs don't taste bad to me, because I realize the healing they are bringing, but they do taste different - not something a child would be used to. DD however is used to eating different things. For instance she eats beets, wilted greens and sweet potatoes for breakfast. Not something your average kid would eat; I just didn't give her the option. She got used to it.

 

Julie McIntyre is available for phone consults and then will reply to questions via e-mail for approx. 2 weeks after the initial call.

 

http://www.gaianstudies.org/herbal_consult.html

 

Does your daughter have any diagnoses other than lyme? Lyme doesn't often travel by itself; usually bartonella, the babesias, mycoplasma, ehrlichia, RMSF can also involved although they may initially test negative.

 

DD was positive for bartonella, but it is only now, after 2 years of abx treatment and 6 months of herbal treatment that we have found that an unidentified protozoa (or babesia-like-organism) was hindering improvement.

Edited September 18, 2014 by rowingmom

[vern_dave]

Thank you for your prompt reply rowingmom. I'm not so sure Bart is not in the mix just because of neg test. She has igg titers for Myco, EBV, CMV and EBV though no current infections. Our DD has been affected in many ways. Again, thanks for the info and contact link for Julie. There is a ND that is not far from us and listed on Buhners website as a provider. It's always such a chore trying to decide who to see. So much wasted time and money. I just want to provide her with some hope.

[TeamTyrion]

Wonderful update! I always learn something from your posts rowingmom.

[Dedee]

This is such great news. Thank you so much for sharing. So is Julie a homeopathic practitioner? I would love to try Buhners protocol, I have read his book, but my daughter is very strange about how medicine tastes and I don't think she would take a liquid at all. I'm not sure how much of the protocol I would be able to follow. We have been using traditional antibiotics for 3 years with minimal resolution. Two steps forward, one step back is our history.

 

Dedee

[rowingmom]

Julie is an herbalist and Stephen Buhner's consulting associate.

 

http://www.gaianstudies.org/herbal_consult.html

 

Sorry about the taste aversion, but most of the protocol is tinctures and infusions (teas). I suppose you could put the powdered herbs into capsules instead of infusing them, and the tinctures into liquid resistant capsules, but that sounds like a lot of work....

 

I am so fortunate DD will gag down anything I ask her to .