rowingmom

Thanks. Thorne is a reputable supplier. Our LLMD uses many of their supplements. A butyrate producing prebiotic - interesting. We are going at it another way by supplementing the butyrate producing probiotic itself in our probiotic rotations. http://www.aor.ca/products-page/baccilus-mesentericus/probiotic-3/#label_tab And then there's grass fed butter if you can find it which is high in butyrate. .

Because DD has never had a bart rash I'm not sure how long it takes them to resolve, but I would think that if rashes are still developing in new areas, treatment should be continued. .

DD showed elevated ALT and AST markers shortly after beginning abx treatment with Biaxin/rifampin. After much humming and hawing (because there is some discussion on whether it can be used with rifampin) I decided to start supplementing with milkthistle (250mg at bedtime) and her markers declined back to normal. They remained normal for the rest of her treatment. We ran CBC and CMP monthly. If you think you need to make a switch from antibiotics I can tell you from experience that herbals (we are using Stephen Buhner's protocol for bartonella/babesia) work as well for us as antibiotics did at reducing inflammation and resolving symptoms: Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

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.

DD has a couple of lyme-specific IND WB Igenex bands, so although she has a negative lyme result, we know lyme is still involved. Her physical symptoms were mostly bartonella (one of the common coinfections), and treatment for that brought most of the resolution we have seen of her PANS symptoms. Her physical symptoms didn't start until approximately 2 years after her PANS psychological symptoms had manifested, so in our case there was some lag. During antibiotic treatment our LLMD prescribed both A-L and A-Bart. Initiation of A-L made no difference in DD's symptoms, good or bad. A-Bart produced an immediate (within 20 minutes) bartonella herx reaction (long bone pain, pick-like headache, emotional lability, motor ticcing), but after gradually increasing the dosage to 30 drops 3x daily and staying at that dosage for 6 months I really can't say that it helped resolve the bartonella infection. She was on multiple combination antibiotics for bartonella while she was taking A-Bart and we discontinued A-Bart at the same time we weaned antibiotics and switched to herbals. After she had been on the herbals for a couple of months, and I had a handle on dosages, I tried reinitiating A-Bart, and got the same immediate herx reaction at 4 drops BID. She was still slightly symptomatic for bartonella when we started herbs, mostly in the form of shin pain with intense exercise, so she was probably still dealing with an infection load. At the time we discontinued abx (after 2 years of treatment) her bartonella IgG titers had declined from 160 to 80. After 1 year of Buhner's herbal bartonella protocol (I decided to discontinue A-Bart) her physical bartonella symptoms have completely resolved, and any amount of exercise does not exacerbate them. We are now focussing on the babesia-like-organism which seems to be responsible for her cognitive/executive function impairments. She was Igenex negative for Babesia microti, Babesia duncani and the Babesia FISH, but reacts to antiprotozoan herbs with a babesia herx - air hunger, sighing, dry cough, chest pressure. She did not have this reaction to malarone, an anti-malarial drug used to treat babesia. I don't think IVIG is contraindicated for lyme, and may actually be helpful for inflammation caused by lyme antibodies through dilution. But if the infection remains untreated, symptoms will return as the IVIG is gradually processed out of the body and lyme antibodies become more concentrated again. http://lymediseaseresource.com/wordpress/happiness-istotal-recovery-from-chronic-lyme-disease-ivig-part-one/

I would image the tests you need to order would depend on which area of the country you live in. Some infections are more endemic in some areas. We live in Southern Ontario and our LLMD originally ordered: Lyme IgM Western Blot Lyme IgG Western Blot CD57 NK test B microti IFA (G/M) Babesia FISH (RNA) HME PANEL (monocytic) - ehrlichia HGE PANEL (glanulocytic) - anaplasma B henselae IFA (G/M)

Trinity - we had great luck with herbs for protozoan infection, even though tests for the common protozoan coinfection (babesia) were negative. Who knows what we are treating with the anti-protozoan, and who knows what you are treating with the antiviral. If you are seeing improvement, you have another piece of your puzzle!

Not to hijack the thread, but did you test for coinfections? DD's ticcing was caused by bartonella infection.

Yes, continuously now except for a suggestible (one time) motor tic, DD is pain/psych/neuro symptom free!

Our daughter's ticcing was the result two things; bartonella die-off and yeast overgrowth or mold exposure. The worst of her motor/vocal ticcing has resolved with bartonella treatment, but she does flare from time to time with yeast infection. She is still taking herbal antimicrobials and they are effecting her gut the way antibiotic treatment would, by allowing yeast to proliferate if probiotics are not supplemented. We have great success with probiotics and natural yeast treatments (green black walnut hull, garlic, oregano oil, caprylic acid) (separating the two by a couple of hours). Our son's acne is his indication of gut dysbiosis. If he eats sugar, bread or any other high carb food, he is sure to break out the next day. The only carbs he can handle are resistant starches (cooked and cooled rice or potatoes). He also has trouble with casein. When he sticks to this diet: http://perfecthealthdiet.com/ he is acne free. So for my kids, gut dysbiosis of one sort or another is the cause of ticcing/acne. Just a thought.

DD's Igenex WB for lyme was negative - she had 2 weakly reactive (IND) lyme-specific bands. Everything else was negative except for kDa 41 which is not lyme-specific. When we retested after 2 years of abx treatment more lyme-specific WB bands were reactive. Perhaps an indication that DD's immune system was functioning properly. Coinfection testing needs to be done.

Herbal antimicrobials can be as effective as pharmaceuticals. DD had a babesia herx with a combination cryptolepis/sida/alchornea (CSA) tincture that didn't show up when she was taking malarone/azith/mino/plaquinel/tindamax. After backing down on CSA we have been able to stabilize symptoms while still giving enough herb to effectively treat the infection. When you reach a good place with herbal dosages you need to stay there for 3 months or so to decrease infection load before trying to increase dosage again. Low dosages over extended periods can be helpful. Herxing is not necessary. DD's ticcing resulted from 2 things: bart die-off and yeast infection/mold exposure. She doesn't tic with babesia die-off, which I found interesting. Make sure yeast is under control and there hasn't been mold exposure. We had to go back to supplementing with the high dosages of probiotics we originally used with abx. Herbs are very antimicrobial. I hope the tics are declining. Keep up the lemon water/stevia, magnesium and Epsom salt baths. When DD had a ticcing flare from grapefruitseed extract meriva curcumin helped where other anti-inflammatories didn't. At least it's summer and he's not in school, poor dear.

Sorry to hear about that. Is something causing a die-off?

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.

We purchased all of our abx through CanadaDrugs.com. Not sure if this is available to you. We couldn't afford to purchase them in the US, they were just too expensive and we were paying out of pocket because we are Canadian. Our local pharmacies wouldn't fill an rx written in NY. Perhaps there is a good on-line pharmacy that might fill for you. I liked CanadaDrugs because all of their drugs were sourced in Canada, except tindamax which had to be imported from the UK.

DD had palilalia, whispering things back to herself pretty much constantly, but more so during a herx or flare. This went on for years - I didn't know that it was associated with her other Tourette's symptoms and is considered a vocal tic. She was also empathetic to the extreme, crying with someone else's pain, or even with sad music. With healing her palilalia has resolved, and although she is still sensitive to the feelings of others, her emotions are under better control. DD never stuttered, although she rotated though many different motor and vocal tics. My feeling is that stuttering may be more the result of a motor coordination difficulty than a true tic. But you can ask her if she gets a promonitory feeling before she stutters that only resolves when the stuttering is performed.

Have to agree with SSS and your comment that GMO soy is a no, no. Even though it contains milk products (I'm hoping more whey and less casein), we use Mercola Miracle Whey for a daily smoothie. To that we add Lekithos sunflower lecithin, chia seeds, organic wheat grass, frozen dark red/blue berries and 1/2 a banana. The kids look forward to it as their daily treat, as do I.

Hot weather used to effect DD as well, but she seems fine - loving it even, this year. I suppose there could be several reasons for the reactions you are seeing. My guesses: 1) the heat is acting like a fever would, and killing bacteria. Lyme and co don't survive well in the heat, one reason why infected people generally have a lower average body temperature. The bacteria manipulate the body in such a way that temps are not detrimental to the infection. Many of our children do not run regular fevers with infection, so this fever response and perhaps normal body temperatures are not operating properly. 2) heat is inflammatory and will increase the severity of any inflammation already present, thus an increase in inflammatory symptoms. With DD I have always associated ticcing with toxin buildup, the behavioural changes with inflammation, so perhaps a little of both in your situation.

The immune suppressant would likely help with symptoms for a while, but if infection is involved I would imagine immune suppression would allow it to proliferate. This is only my opinion. Others here claim immune suppression is necessary for healing.

Good for you! Stepping outside the allopathic medicine box is scary, but it can work! Thanks for the update. For the time being we are trying soil based probiotics - PrescriptAssist - every other day. http://drbganimalpharm.blogspot.ca/search?q=soil+based+probiotics DD's ticcing has completely resolved since we started this probiotic. Mind you she wasn't too bad before we started. This was a hard decision for me because of the talk that several of these probiotics are actually spore formers (like C diff) and hard to get rid of once you introduce them.

DD and I are both recovering well using Stephen Buhner's herbal lyme coinfections protocols. Abx are not the only route to regaining health and at low dosages herbs are not as stressful to the body as abx can be. Buhner's associate is available for consultation: http://www.gaianstudies.org/herbal_consult.html

Thank you so much, you are giving me shivers! You must be so very, very proud of her. And to have helped her the way you have, you deserve your own award. So many suffering children out there will never know what they are dealing with - your daughter is lucky to have you as her mother. We too have reached the point in healing that you have, although DD remains on low dose herbal treatment for her infections. She is one of the top students in her class, although not 95+ (I'm not sure that's possible if she inherited any of her intelligence from me , her father is pretty smart though.). Her principal called the other day to say what a wonderful child DD is; respectful, happy, caring, studious - that she was a joy to have at school. I truly believe that everything our children have been forced to endure forges them into incredible, empathic individuals when they emerge on the other side. Isn't it wonderful to see just what our children are capable of when not dealing with the effects of brain-impacting infections!

"Her pedi is convinced none of her symptoms are related to the tick bite." As was ours. The response of our PCP was that symptoms were psych related because there were no obviously abnormal values revealed in the routine blood tests. He refused to test for infection claiming that I had been "researching too much", and that my questioning of possible bacterial infection was ludicrous. Headache, pain at the base of the skull, light and sound sensitivity, behavioural changes are all text book symptoms of encephalitis - you would think a doctor would know this, ours didn't. I requested a referral to a pediatrician. Our pedi found positive ANA titer's (indicative of connective tissue autoimmunity) but other tests for lupus, crohn's etc. were negative. She was stumped. I was told our daughter's symptoms of encephalitis were psych related because she didn't want to attend school and we were offered clonipin and Ritalin for ticcing and ADHD. It was also suggested that I use spanking whenever symptoms arose. When I returned to both doctors with positive test results for bartonella hensalae through the Igenex lab I was told that the test was a false positive and that the lab was not reputable. They refused to help. Not even to retest for bartonella themselves through a "reputable" lab. I was scorned for "researching" because, after all not being a medical doctor, I was incapable of understanding any of this myself. I will never return to either of these two doctors. Just because they have a whole lot of post graduate education does not make doctors infallible. Two doctors completely missing symptoms of encephalitis; this was a game changer for me. Why could your daughter not have become infected before the tick bite? She has been outdoors, exposed to animals and biting flies, has she not? She wasn't aseptic before the tick bite, no one is. Perhaps her infection(s) happened previously and her immune system was able to handle it/them for some time. If something happened - the bacterial/parasitic load increased through successive exposures, her immune system was impacted by a vaccination, exposure to pesticides, exposure to other organisms, or (as in our case) a traumatic incident - that decreased her immune competence, symptoms would then manifest. Many people carry the infections I mention and do not show symptoms of illness. Exposure to bacteria is not the main reason for infection and symptoms. If it was, there would be no one left on earth because we are all exposed daily. A poorly functioning immune system and an inability of the body to detoxify in a timely manner results in an overload of both bacteria and their metabolites that we see as symptoms. This is a hard one to wrap your head around, because we have been conditioned to believe that mainstream allopathic medicine is the only politically correct type of medicine practicing at the moment (the rest are deemed quacks). That nutrition (I'm talking evolutionarily appropriate and chemical free) is not as important as pharmaceutical drugs, that the immune system isn't capable of handling infection without abx, vaccinations and other medical interventions. That if you are asymptomatic, you are aseptic and not carrying bacterial/viral/parasitic loads. There are other paradigms out there.

I would go with what works. That's the point after all - to help our kids function/feel better. Don't try to increase bart abx too high, too quickly. Just hold at low doses for a few months, and then increase. I have a feeling that your daughter's reactions are herxes.

Ahh, yes. The wine, although mine tends to be between 9pm to midnight. As soon as DD hits the sheets..... My MIL had good luck stopping smoking with hypnotherapy.