rowingmom

We use permethrin from REI for clothing. I spray shoes and socks for golfing and DD's pants and shirts and hats for horseback riding. I also spray the dogs' beds with permethrin and they are treated with a heartworm/flea/tick systemic. Permethrin lasts through a couple of washings so doesn't need to be reapplied every time, but it does disintegrate in the sun, so if there is a lot of sun exposure to the clothing you might want to reapply for that reason. DD doesn't get to do the spring riding session because ticks are too numerous at that time. We spray exposed skin with Natrapel picaridin. My husband and son say it works better than DEET at repelling mosquitoes.

We are using 1/4 tsp of the whole organic powdered herb (1stChineseHerbs) in decoction and 1/4 tsp of the tincture (WoodLandEssence), all 3x daily. I would like to find a North American supplier because of the possibility of contamination with anything sourced (even organic) from China these days. I am consulting with Buhner's associate this afternoon and will post her suggestions if she has any. 1 tsp = 4 grams (of sugar) so 1/4 tsp = 1 gram, so we are dosing approx. 2 grams 3x daily "Solvay's triple strength Resveratrol which has 225mg Japanese Knotweed per capsule" SourceNaturals which was once recommended by Buhner, and which was what we used in the beginning, contains 500 mg japanese knotweed per capsule. Supplement Facts Serving Size: 2 Capsules Servings Per Container: 30 Amount Per Serving %DV Sodium 5 mg <1% Polygonum cuspidatum Root Extract 1 g † Standardized to 8% Total Resveratrols Yielding: Total Resveratrols 80 mg † Resveratrol 20 mg Red Wine Extract 5 mg † I used to purchase it from iHerb. I find it much cheaper to purchase the powder (no fillers). You can encapsulate it yourself and let stomach acid do the extraction, or you can decoct it into a water extraction. I use the tincture along with the decocted powder because each extraction method extracts different constituents and I am trying to get as many different constituents as possible. When we were beginning the herbal bartonella protocol and I was messing around with dosages of the other herbs, I found that 1 double dose (ie 4 grams) of either the powdered japanese knotweed herb or the tincture was enough to bring her out of an emotional herx (ie rage ). DD is no longer herxing so 2 grams 3x daily is where we remain.

If antibiotics didn't work for myco in the past, I would try something different. Buhner's book on Healing Lyme Coinfections: Mycoplasma and Bartonella was a good choice for us. We are using the bartonella protocol, but it has many similarities to the mycoplasma protocol. http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary-ebook/dp/B00CWD7W2C/ref=la_B000APJOG6_1_4?s=books&ie=UTF8&qid=1400451231&sr=1-4 You can't really bombard these infections into submission. There will always be one bacterium left, and if the immune system isn't functioning adequately to keep it from multiplying, you will be back in trouble in no time. Immune function, nutrition and the ability of the body to metabolize toxins from food, vaccines, and the environment as well as those produced by bacterial die-off are an important part of the equation as well.

Can you share the name of the nutritional supplement you used for you father-in-law?

In our case bartonella and mold / yeast toxins caused ticcing. Herxing with babesia die-off does not cause ticcing for DD. You might want to test for bartonella as well. We are using low dose herbal anti-microbials now to address remaining infections with great results. I agree about homeopathy - I just can't get comfortable with it. I have read several books on it including Amy Lansky's Impossible Cure, but my biologically trained mind can't make the switch. Homeopathy and herbal treatments are very different things. Homeopathy is energy medicine which uses the energetic imprint of a substance (diluted to zero concentration - so there is no substance left) to elicit a natural immune response. Herbal medicine uses the multiple anti-microbial, anti-viral or immune supporting constituents of herbs to either act as natural antibiotics or natural immune modulators/boosters. This requires the use of actual whole herbs or herbal extracts and not the energetic imprints of them.

WoodLandEssence is highly recommended by Buhner. I would trust them above Nature'sWay. We just happen to have Nature's Way in our local health food store and it's too easy to go there to pick up hawthorne when I run out!

Buhner says you can mix all of his herbs and take them together. That taking herbs as a mixture increases the number of anti-microbial constituents, reducing the probability of resistance by the bacteria. Both sida acuta and hawthorne are part of his bartonella protocol, along with houttuynia, japanese knotweed, EGCG, l-arginine (which we don't use), and milk thistle. http://buhnerhealinglyme.com/ See Co-infections protocol. If you are trying to find optimal dosage you will want to increase only one herb at a time (leaving the dose of the other constant) and keep an eye out for die-off reactions. We get sida as a tincture from WoodLandEssence and hawthorne as a powder in capsule form from Nature'sWay. The tincture could be dropped into an alcohol-proof capsule, if there is such a thing.

We had improvements with rifampin as well. Our LLMD used it along with biaxin to treat bartonella.

We didn't know DD was dealing with babesia either (she had tested negative for microti and duncani through Igenex), until she had a babs herx a cryptolepis challenge. The LLMD was somewhat amazed. Don't give up.

Have her tested for coinfections while you are at it, bartonella especially.

DD had a real ramp up of ticcing with GSE, perhaps because of it's action as a cytochrome P450 inhibitor, and the resulting increase in toxin load. She also showed increased ticcing with yeast infection. I have been able to keep yeast at bay with 75 billion mixed probiotic cultures daily (we use a rotated combination of Culturelle, Align and RenNewLife Ultimate Flora) as well as cultured vegetables daily. We haven't stopped herbal antimicrobial treatment. Although we are not specifically treating for viral infection, there is probably viral coverage in the herbs we are using. I just dose probiotics away from antimicrobials. We are on a low sugar but not low carb diet. Our carbs come from fermented oatmeal, sweet potatoes, carrots, squash etc.

I won't say it .

You are properly addressing any methylation difficulties and using detox strategies, right? No. I have no idea how to do any of that. I can't read, except for small bits on forums. I do not understand the methylation stuff and my brain cannot do any reading/ research and it seems highly complex and complicated. I have extreme fatigue, mostly mental, excessive daytime sleepiness, it's hard for me to read stuff on this forum and process it much less a huge book and me with no scientific background. I'm also tired of trying things and don't want to do any more, the cannaboid stuff seemed like a last resort for me. Ophelia - you may be interested in this post on MDJunction: http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11109470-importance-of-focusing-on-the-immune-system-not-the-bugs I will not bug you anymore. You have truley been through a lot. You haven't run out of options, perhaps only mainstream ones.

It says "corn free", maltodextrin derived from tapioca.

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

Have you discontinued homeopathy? DD tics with yeast, mold and die-off toxins. For that reason I have never considered using Sacc b. I think LLM's son had problems with Sacc b. You might try and contact her.

That's exactly why we are continuing with herbals, and probably will for another year or so. DD is doing so well now that I want to keep supporting her while she continues to heal physically and neurologically. She told me today that lately she is noticing improvement in both gross and fine motor skills (shooting basketballs and cutting with scissors). She is noticing this herself. Her teacher has already commented.

I had the same results within 20 minutes of a double dose of Japanese knotweed, although ticcing was not involved at that time - this was last summer. Just crying, frustration, talking back, general nastiness. All gone in 20 minutes. Japanese knotweed is an anti-inflammatory, so just wondering whether CBD was acting in this case as an anti-inflammatory.

DD tested positive for B hensalae so we went after it. She did test negative for both Babesia duncani and microti, but both the LLMD and I think she is dealing with babesia-like-organisms because of her babs herx response to Buhner's babesia herbs. She had no herx response to malarone. There are lots of bartonella organisms out there, probably more that haven't been identified: http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf This is why I like herbs so much. They contain multiple components and may treat more broadly than pharmaceutical antimicrobials do.

Samsel on contamination in meat and potatoes: http://www.youtube.com/watch?v=GLyp4-Ob3Eo&feature=youtu.be

Not that LLM hasn't explained all of this to us before, but this is a good overview: http://www.dearpharmacist.com/2013/08/08/2394/ A part excerpt: Usually in severe cases, the symptoms are due to toxin build-up; please note the methylation defect does not cause Lyme, which is a tick-borne illness. But the infection causes ammonia, quinolinic acid, acetylaldehyde, etc… and methylation defects reduce the person’s ability from properly detoxifying, repairing the damage and fighting the infection and co-infections. This explains the severe symptoms that come and go in some people, and why some folks herx so badly and others don’t. One process of methylation turns on and off genes, this means it affects your DNA (genetic code). The ability to methylate helps you process toxins and hormones. For example, estrogen… you make it in your body, and you also get it from xenobiotics (chemicals in shampoos, pesticides, herbicides, plastics and more) if you can’t break down estrogen and get it OUT of your body, you could develop all sorts of disorders. Methylation also plays a role in making and breaking down various neurotransmitters, such as energy producing epinephrine and sleep producing melatonin. Most people are concerned about making enough neurotransmitters but don’t sell yourself short. If there’s a problem breaking neurotransmitters down, then they will hang around in excess which may cause unwanted issues such as seizures, insomnia, panic attacks and fits of rage to name a few. See how methylation might apply to you or someone you love?! Consider the people who might have a methylation problem: Children with autism, anyone with a seizure disorder, neurological condition, Alzheimer’s disease, cancer, severe Lyme disease, chronic infections, low T cells or reduced NK cells, diabetes, allergies, fertility issues, miscarriages, cardiovascular disease, chronic fatigue, anxiety or any psychiatric illness. Oh, and if you are extremely sensitive to medicine, or to laughing gas (given by the dentist) you might have a methylation problem, too. See my list above for other conditions associated with methylation problems.

Keep us updated on BRAVO. Thanks.

I would think camel's milk produced in North America would still be safe. Just be aware that if MERS makes the jump that unpasturized milk might not be the best. Thanks for the head's up.

How much CSA were you giving him? We saw cognitive improvements with 15 drops BID (so if the tincture is equal parts that would be 5 drops cryptolepis BID). DD couldn't tolerate 15 drops CSA TID (or 5 drops cryptolepis TID) so we had to back off. The increase in CSA produced significant herxes for DD - babesia symptoms she had never experienced before, even with 6 months of malarone/tindamax/azith/plaquinel/mino (air hunger, chest pressure, sighing). I would think that CSA would address more aspects of whatever infection you are dealing with, seeing as it has more constituents than just cryptolepis. Did you try slowly increasing doses of CSA? Are you using Buhner's neuro anti-inflammatories (knotweed or kudzu) or immune supporting herbs (cordyceps, american ginseng, ginger, curcumin)? I think there is more to the healing of these infections than simply addressing infection using antimicrobials. We are still using these nutritional supplements suggested by our LLMD: liposomal glutathione, liposomal curcumin (meriva), vit c, vit d, methyl B's (every other day), transfer factor, phosphatidyl choline, at least 50 billion probiotic cultures. Gut function is important so we try to stay away from foods treated with glyphosate because the chemical kills beneficial gut bacteria. Have you talked with Buhner's associate? Her consult fees are $150/hr phone call with e-mail privelages for two weeks. That is for the first consult, follow-ups are $75. There are several herbs she recommends for healing neurological symptoms. I will be consulting with Julie later this month to inquire about adding artemesia to our protocol since we now know that we are dealing with protozoan infection. I guess Stephen's book on babesia won't be out until next spring. Do you have Buhner's books? Antibacterial herbs for resistant bacterial infections Healing Lyme coinfections: mycoplasma and bartonella An excellent resource on the herbs you are using.

This was my attitude as well; to start out using abx with the help of a knowledgeble physician, to get myself on track with infection etiology and symptomology and then proceed to a more natural protocol. You will learn more than you can imagine from the mycoplasma/bartonella book. Buhner's ideas on infection and the immune system are different from the mainstream, but that doesn't mean they are wrong. We used a couple of the broad spectrum herbs and his anti-inflammatory throughout the last 6 months of DD's treatment, perhaps providing the additional antibiotic boost that was needed both to decrease bacterial load and to support a proper immune response. Buhner maintains that his herbs can be used along with abx and we did find improvement with low doses used concurrently. I kept an eye out for adverse reactions (which I assumed would appear to be different from symptoms she was already experiencing), and we checked CBC/CMP monthy. We had no issues.