rowingmom

Not minocycline alone. After 1.5 years of rifampin/biaxin (because DD was allergic to bactrim), A-Bart and a couple other things we switched to minocycline / plaquinel / tindamax / malarone / azithromycin. 6 months of that and we were done. Well, all except for Buhner.

....and don't forget Healing Lyme and Coinfections. I can't wait for his babesia book, soon to be published. As 911rn and ibcdbwc also mentioned above, Buhner believes a properly functioning immune system is crucial for recovery. Killing infection will not result in a cure, the immune system has to be able to contain some level of replication. Our bodies exist as an ecosystem, not a sterile environment.

Guillain–Barré syndrome from multiple vaccinations and stressed immune system?

Have either of you had negative reactions to krill oil?

I would try to find and ILADS trained LLMD (Lyme Literate Medical Doctor) with history of a tic bite. Ours knew right away that our daughter's PANS/PANDAS/Aspergers symptoms would resolve with treatment for her infections. They have.

Like LLM's DS, I think DD may have an adverse reaction to omega 3. I am starting to correlate an increase in ticcing with omega 3 supplementation (CLO 4x weekly), which actually increased when I added krill oil (supposed to be highly absorbable and bioactive). Unfortunately this ticcing/omega 3 observation was confounded by a yeast infection, so that could have been a factor as well. Now on increased probiotics and with removal of omega 3, DD's ticcing is back to a level of 1/10 (it is suggestable only) from the 3/10 that she experienced a few weeks ago. In researching a possible cause for this reaction I can across Brian Peskin's work. He suggests that the body makes only as much DHA and EPA as it needs from the parent oils (ALA and LA), and that the parent oils are important for the proper maintanence of cell membranes. That by dosing straight DHA/EPA you may end up overdosing on the metabolites. I know that for DD, a build-up of anything that her body can't detox will result in ticcing. There are some interesting references in these papers, although his work has been discredited by many. http://www.brianpeskin.com/BP.com/publications/Journal%20of%20Lipids%20-%20Why%20Fish%20Oil%20is%20Harmful-1-2014.pdf Our LLMD prescribed phosphatidyl choline (PC), which we have been using for the last 3 years. We had been supplementing PS as well, but recently ran out, and I think I will let that one go for a while. I haven't noticed much of a change in removing it at this point. Not saying at all that PS is not important because DD had a great breakthrough in speech/singing when she was 4 and I started supplementing with it. She had never sung, no nursery rhymes or anything at all - even though I sang and played those types of childrens songs fairly frequently. 2 days after I started supplementing PS, she started singing. It was very weird. At this point I realized she was dealing with some nutritional deficiencies, that it wasn't only her quirky behaviour that was making her different from other kids. PC is another phospholipid that is important for the health of cell membranes and nerves. I think we will stop using PC soon (the choline/lecithin part is usually derived from GMO corn) and substitute this: http://www.mysunflowerlecithin.com/deoiled-sunflower-lecithin-in-powder-form/#content

My thought is that the continual sinus involvement is an indication of chronic sinus infection (bacterial/fungal) of some sort that is not being addressed by the present treatment.

Probiotics alone didn't help the red eye circles, but diflucan did. Yeast caused red eye circles in DD's case, not sure about yours. Post what happens with nystatin and then maybe we will have an n=2 result for red eye circles = yeast overload. If I was you I wouldn't change probiotics and add nystatin at the same time. You won't know which caused a response if you get one. Two days is not enough time.

I would imagine that an improvement in immune response could produce yeast die-off as well as bacterial/viral die-off. But for us red eye circles were indicative of yeast infection. Her eyes didn't get redder with diflucan nor did she herx with it, everything just visably resolved.

DD had big red circles under eyes recently (mid January), which began about 1 week before she developed a yeast infection. I couldn't figure out what was causing it. She looked as though she had been crying. Her ticcing had increased as well. Then the yeast infection developed with intense itching. It took me a couple days to realize that I had upped her dosage of cryptolepis/sida/alchornea tincture with no thought of it's true antibiotic properties. Physically/mentally she had responded well to the increase and she wasn't herxing, but obviously the herbs were stong enough to require higher amounts of probiotics than she had been getting with daily fermented vegetables. I increased her probiotic supplementation back to what it had been while she was on abx treatment. The itching and red eyes declined, but were still there. Just to give her some relief I gave her 1 dose of diflucan for the yeast infection. Red eyes completely disappeared, itching resolved for 3 days and ticcing improved somewhat. Just to complicate things, at the same time this was going on I had picked up on the posts on fish oil, realized that perhaps I could be increasing omega 3 supplementation and so started DD on krill oil. I think this was one of the things that increased her ticcing. Throughout abx treatment, DD would have dark circles, but not red, associated with die-off. This was the first time I had seen the red circles. She had also been on high doses of probiotics and had never had yeast infection problems during abx treatment. So I now associate DD's red circles with yeast, dark circles with die-off. She is still having a low level itching which concerns me. Our ND says it could also be associated with her higher, unopposed levels of estrogen (DD just started her periods 2 months ago) which will remain unopposed until she starts ovulating which could be up to 1 year. Under her eyes is clear at the moment and ticcing is back to 1/10 (is suggestible only) as we continue higher levels of probiotics and have discontinued omega 3s (much to our ND's dismay). Sorry but she is not getting omega 3 supplementation if it makes her tic. We continue with phosphatidyl choline for brain support. I need to figure out why omega3s cause ticcing for DD.

We also use more than one (culturelle, align, RenewLife Ultimate Flora, PB8, PrescriptAssist) and rotate through them, 2 per day.

I'm so sorry. It's a heavy burden to know that you alone are responsible for your child's care. Do you have any naturopathic doctors or herbalists that you can seek help from? Mainstream medicine let us down in a big way, and I will no longer search there for answers.

http://www.rxlist.com/doryx-drug.htm Doryx is slow release doxycycline, so no it's not a fluroquinolone antibiotic. We haven't seen a mainstream allopathic doctor since DD started treatment. Our LLMD is as close as they come. I often wondered when she was on multiple/combo abx what I would say if I had to take her to a hospital. Sure glad that didn't happen. Now I can just say "some herbal supplements" and not draw much attention.

The fluroquinolones can cause tendonitis and tendon rupture.

NAC can cause issues in people with a CBS mutation. I think LLM's son has trouble with this supplement.

No dislocations here, but lyme likes joint and tendon tissues, especially weakened ones. The bacteria require HA and glucosamine, so they gravitate to joints causing tissue destruction and inflammation to release these nutrients. I'm not suprised that your daughter could have joint involvement. DD's once positive (now negative) ANA (speckled type) is indicative of autoimmune collagen tissue involvement, so she was probably dealing with some joint/tendon/ligament destruction as well, only she wasn't symptomatic.

Sorry, that bit about the reactive hypoglycemia is from Dr BG's post. I should have italicized it. She explains everything she has done in her posts on each topic, so you should find it listed there. She is also pretty good at answering questions in the comments section. http://drbganimalpharm.blogspot.ca/2013/12/how-to-cure-sibo-small-intestinal-bowel.html This should be the link for step #7.

If he is recovering well from the ticcing, perhaps the additional glutathione he is producing with NAC supplementation is improving his detoxing. You are doing epsom salt baths/lemon water as well, right? I would go really slow with the IgG, recover from die-off (if that's what it is) and see if there is overall improvement after a while. Perhaps pulsing (as we had to do with Tindamax because of die-off). 1-3 days on, 6-4 days off. I'd run it past the MD to get his/her OK. Some don't appreciate us messing around with protocols. Herxing is really only a good thing in that it indicates that you may be on the right track. I don't think it's good for our kids' bodies to be in a constant state of toxic overload. As much as it would be good to be able attack these infections full out, if their bodies can't withstand and eliminate the die-off, they will only get sicker. Keep us updated, I would be interested to know how it goes.

@ 3bmom - Curious as to which Chinese herbs helped your shingles. Thanks

Our LLMD gave us liquid Virapress which is bovine IgG. I never did use it with DD because it caused huge inflammation (flu-like muscle pain symptoms) in myself when I tried it (at very low dose - 3 drops daily). The LLMD wanted DD on 4 drops daily and I was seriously afraid of DD's reaction. It's still in the freezer. For me, Virapress caused inflammation. I have had similar inflammatory responses with large (meaning doses suggested on the bottle) dosages of cat's claw and astragalus. So this makes me think that the bovine immunoglobins did cause die-off which in turn released endotoxins, which increased inflammation. In DD's case the released endotoxins would have increased ticcing. We now only take astragalus 1x every other day (rotated with ColdFX - American ginseng), instead of 3x daily suggested dosage, and this seems to work well at boosting the immune system, but not overly so. Buhner suggests not using astragalus at all with chronic lyme because he says it can increase autoimmune- type responses (here, I think of ticcing and pain), and using cordyceps instead. DD's ticcing is very much a symptom of die-off/toxin buildup. So I imagine if DD was taking immunoblogulin and experiencing a die-off, that her ticcing would also increase.

There are a few posts in this blog about "weeding, seeding and feeding" the gut to address SIBO with Soil Based Organisms and resistant starch/psyllium. The comment sections are informative as well. http://drbganimalpharm.blogspot.ca/ We started this protocol a couple of weeks ago after DD's yeast flare. So far, so good - itching and ticcing have resolved and the dark circles under her eyes are almost gone. DD is taking a rotation of probiotics, culturelle, align, RenewLife Ultimate Flora, PrescriptAssist, with 2 of the 4 mentioned daily; the most potent ones with potato starch/psyllium. So far we only take one dose of resistant starch/day, I don't want to overdo it. There are seven steps in all: Dr. BG's 7-Steps Paleo* Gastro IQ SIBO Protocol HOW TO CURE SIBO, SMALL BOWEL INTESTINAL OVERGROWTH (with major contributions from Tim/Richard/Marie/FTA) 1. Fermented veggies made the ancient way with organic dirt-covered vegetables, ex. kraut, kvass, kim chee, kefir, etc. Read Sandor Katz. 2. Ancient heirloom potatoes, tubers, roots that are low glycemic index (or high if good insulin sensitivity) and ancient heirloom grains, legumes, lentils/dal that are low glycemic index (or high if good insulin sensitivity), prepared the ancient way (soaked, fermented, etc) 3. Soil-based probiotic 1-2 daily if not severely immune compromised (Bacillus licheniformis, Clostridium butyricum, etc) 4. Raw PS (potato starch) 1-3 Tbs + Psyllium (if not allergic) 1 Tbs + high ORAC green powder (I like amazing grass, LOL) in 2 cups plenty of water 5. Exercise low-moderate intensity one hour daily continuously (10,000 steps) to move the gut/peristalsis and overcome broken myenteric musculo-neuro junctions 6. Avoid allergenic foods (corn, soy, gluten/wheat, dairy, nuts, egg whites, etc). Avoid GMO products and livestock/poultry fed GMO crops (corn, soy, etc). 7. Heal hormones and immunity -- take adrenal support, liver support, antioxidants etc (I use biocurcumin and berberine to combine with anti-microbials/anti-parasitics). This is particularly imperative for those with reactive hypoglycemia and BG crashes when they go longer than 3-4 hours between meals. Optional 8. If the above fail, then you have more fastidious overgrowths and require 2-3 rounds of anti-parasitics/anti-microbials/anti-fungals. See what worked for my family and I HERE. If the above still does not fix SIBO, then consider mercury toxicity. Mercury saturates and kills microvilli in the small intestines and also disables enzymes including digestive enzymes. Here is the first step, the others follow: http://drbganimalpharm.blogspot.ca/2013/11/how-to-cure-sibo-small-intestinal-bowel_10.html

Increasing the amount of fat you use while cooking can help with this also. Ghee, flavourless coconut oil, red palm oil for cooking and olive oil for drizzling. Great gluten-free, paleo type recipes here: http://stalkerville.net/site/chow/

I would purchase Buhner's book: Herbal Antivirals and investigate some of the herbs. His associate is available for consultation. I think L-lysine works for viral infections as well.

Our LLMD offers this in her practice, but never suggested it to us. I'm not sure if she thought DD was too young (12)?

I was going to mention babesia as well. DD is actually having babesia herx reactions (chest pressure, sighing, air hunger) with cryptolepis (an herb that Buhner likes for viral infections and is used in many countries for malaria (also a protozoan infection) along with artemesia. DD tested negative for babesia, but I am betting we are dealing with some type of babesia-like-organism (BLO) that is not showing up on the babesia test. DD also never really had any clinical symptoms of babesia either, most of hers were bart. We have had further improvement continuing with cryptolepis on top of the bartonella protocol herbs.