rowingmom

If this woman is a nurse, she probably had the flu vaccine as soon as it came on the market this fall. It is recommended that nurses be vaccinated to reduce transmission risk to patients.

Have you found information on how to help heal the BBB? We are working on the GI tract now, along with supplements to boost the immune system (transfer factor, cat's claw etc.). DD lost her speech 2 weeks after the 15 month MMR vaccine, and it took 4 years of speech therapy to get it back - the doctor said it had nothing to do with the vaccine. I think you are right on. I don't think abx alone will help her, the immune system needs to start working properly again.

Suzan, can the homeopathic remedies be used with other protocols, i.e Buhner and/or antibiotics? Have you ever tried ledum?

My DD10 has had problems since birth. Sound, light, touch sensitive, non-stop crying. Dark circles under eyes. Febrile seizures. Lost speach at 16 months after MMR vaccine. Speech therapy until 6, OT, PT diagnosed ADHD, inability to concentrate, delayed social development, bed wetting until age 8. Unknown bite 2008, motor/vocal tics began soon after which were exacerbated with strep infections, cleared with penicillin used to treat strep. Diagnosed PANDAS (but no testing), pediatric psych. refused to treat. LLMD found lyme/bart and she has been treated since June 2011, biaxin/rifampin for 4 months. All symptoms resolved. Handwriting improved, able to concentrate, tics gone, sound/light sensitivity gone, age appropriate behaviour, happy, hardworking at homework, wonderful little girl. Rifampin was stopped (we thought bart had been addressed) in Oct. By end of Dec all symptoms had returned - everything, all physical symptoms motor/voc tics, unable to play with kids at school etc. Restarted rifampin two weeks ago and saw the last tic two days ago. Completely different child and back to where she was in Sept. I hope the Abx keep working.

The bottom kind of drops out of my stomach to hear your story LLM, I'm so sorry. Our LLMD started DD10 on Research Nutritionals Transfer Factor Multi-immune last May before we had gotten back any lab work (I think 4-life transfer factor is a little cheaper). She was to have blood taken and then start taking it right away. I found it really helped her energy (didn't help other symptoms though - pain, tics IBS), and remember thinking "maybe this is all we need". Ha. Anyway, she has not been off of it since, so now it's kind of lost in with all the other stuff. A couple of months later she started RN Lyme Plus transfer factor as well, didn't see much of a change, but we are still on that - want to boost the immune system as much as possible. We use curcumin every other day and I add a capsule with pepperine/vit D to it - can't really see a difference there either. We are GFCF low omega 6 to decrease inflammation. One thing I found to help our "coming down with flu" symptoms is COLD-FX (I'm in Canada). Three of those every few hours (with C and zinc) and we're good the next day. It's an extract of American ginseng and is supposed to increase NK cell production (which I think is what transfer factor is supposed to do). Stephen Buhner suggests in his book Herbal Antibiotics that garlic and oil of oregano have the widest effects of all the herbs he uses to attack bacteria, yeasts and viral infections, we take 1-2 raw cloves/day and 3-6 drops O of O. I know if I over-do garlic/oregano I herx. The one thing he does suggest for lyme et al. is Japanese knotweed (resveratrol). It's the knotweed, not the resveratrol that produces synergystic effects with other herbs/drugs and helps to distribute them further into the body. I have found a difference when I run out.

When you first start to use progesterone you can have estrogen dominance symptoms caused by progesterone mobilizing estrogen from the estrogen receptors. Estrogen is inflammatory and can cause symptoms of inflammation. Bio-identical progesterone is anti-inflammatory, but you need to make it through the dominance symptoms first, by either increasing the amount of progesterone for a while, or decreasing and slowly ramping up. This is a great website with lots of info. http://www.progesteronetherapy.com/estrogen-dominance.html#axzz1kti5aC8S They will answer questions you have, and they have lots of info on progesterone use during and before preganacy.

The dosages are listed on Buhner's site: http://buhnerhealinglyme.com/

My daughter and I also use Japanese knotweed (the type of resveratrol that Buhner recommends) and cat's claw for lyme. When I started on the two supplements this summer I developed symptoms that I had not had before - sensitive skin (the sun felt as though it was burning me after just stepping outside, anything hitting my skin would feel like I had been flicked with a rubber band and would sting for a while), light sensitivity, and increasing hair loss. These symptoms lasted for approx. 2 months. After 2 weeks of supplementation I developed sore aching muscles, joint pain and increased fatigue (not a fun thing to do to myself over the holidays). After 4 months all of these symptoms resolved. At one point I ran out of knotweed but continued with cat's claw while procrastinating on reordering. I did notice a decline in overall well-being which improved with re-addition of the knotweed. Knotweed definately helps me.

I think the more alkaline the stomach the better it is for H pylori survival. "What is Helicobacter pylori? Helicobacter pylori, or H. pylori, is a spiral-shaped bacterium that grows in the mucus layer that coats the inside of the human stomach. To survive in the harsh, acidic environment of the stomach, H. pylori secretes an enzyme called urease, which converts the chemical urea to ammonia. The production of ammonia around H. pylori neutralizes the acidity of the stomach, making it more hospitable for the bacterium. In addition, the helical shape of H. pylori allows it to burrow into the mucus layer, which is less acidic than the inside space, or lumen, of the stomach. H. pylori can also attach to the cells that line the inner surface of the stomach. Although immune cells that normally recognize and attack invading bacteria accumulate near sites of H. pylori infection, they are unable to reach the stomach lining. In addition, H. pylori has developed ways of interfering with local immune responses, making them ineffective in eliminating the bacteria (1, 2)." From: http://www.cancer.gov/cancertopics/factsheet/Risk/h-pylori-cancer It also has multiple flagella.

My DD10 started Septra in June to address bart symptoms (Igenex IgM positive for bart, a couple of bands for lyme), but had an allergic reaction so was changed to rifampin in July. She was on rifampin/biaxin for 4 months and when bart symptoms had mostly resolved added A-Bart, A-L, dropped rifampin and added plaquenil to address lyme which was starting to show up (new symptoms not seen before - joint pain, extremity tingling). Our LLMD thinks bart was not quite taken care of and so we are starting at it again with biaxin/rifampin/plaquenil continuous for a month and then maybe pulsed. I thought bart was relatively straightforward to treat but our LLMD mentioned that she is seeing sicker patients out of Canada recently.

Nausea and stomach pain are one of my daughter's bart symptoms. We stopped bart treatment (except for A-Bart) two months ago as her bart symptoms had mostly resolved and started to address lyme. Over the last 2 months all of her bart symptoms have begun returning, motor tics, repeating sentences under her breath after she has spoken, long bone pain, stomach pain and nausea. She doesn't have a fear of nausea, but tells me it's there. She also has a lower tolerance for swinging/spinning.

I find the juice of 1 lemon, twice a day (2 lemons/day), helps me. I get organic. Two Methyl b12 lozanges (1000mcg) per day as well.

We are mostly paleo with some rice and potato added in. I feel that we get many more of the nutrients our bodies require when the diet is composed of vegetables, meat, grass fed fats (including ghee), coconut oil, some nuts and fruit instead of the 6-11 servings of grain (are we birds or mice?) suggested by Health Canada, the AHA, ADA and others. The seed oils (canola, soy, safflower etc.) that are supposedly healthy are high in omega-6 fatty acids and very inflammatory - just what we need, more inflammation. We started out Paleo, but have migrated to more of a Perfect Health Diet: http://perfecthealthdiet.com/ This has been circulating the paleo blogs lately: A TED talk by Dr Terry Wahls who cured her MS using a Paleo diet

Being from Canada where they will not treat Lyme with long term Abx, we pay for everything. Drs visits included. I am so mad.

Any idea how long the results last? It's obviously important for the brain - wonder if it helps brainfog. Check out this excerpt from 2009 letter by the Parkinson's Foundation: http://www.parkinson.org/NationalParkinsonFoundation/files/56/56b9bd0e-0334-429f-aa7e-7fdcba48b6cb.pdf "At this time there exists no compelling evidence that intravenous glutathione results in any meaningful clinical improvement in Parkinson’s disease patients. Patients should beware of any medical practices offering a fee for glutathione treatment of Parkinson’s disease." Sounds like CDC response to LLMD treatment.

Not that we have an actual PANDAS diagnosis, but DD10's motor/vocal tics which used to flare with viral infections have not reappeared with her last two colds. I like the bucket analogy.

My DD10 had a lot of rage and a great lack of coping skills for the two years after a non-EM 1 inch diameter rash. Motor tics started soon after the bite, but pain symptoms did not develop for another two years. She had trouble concentrating and would become frustrated very easily, screaming and pounding herself if she had trouble with homework or piano lessons. The piano teacher could not put up with it, and we ended up quitting. Although she was do pretty well after she mastered a piece it was generally too frustrating to practice, and each session would end with screaming and crying. The raging increased with strep infections but subsided with Abx. She has greatly improved with lyme/bartonella treatment, although we do have rage/frustration setbacks with herx reactions.

Check the PANDAS/PITANDS forum. I think several of the parents there have children with food aversion difficulties which seem to be OCD related.

Two weeks ago we added A-L to A-Bart and ramped up a little fast (3 drops BID) resulting in some lyme symptoms that she has not previously complained of - sore ankles, knees, tingling arms, more emotional. These improved once I decreased the dose to 1 drop BID, which we continue with. Everything was going great (no symptoms except upon significant exertion - 1 hr celtic dancing, running and playing with friends was no problem) until we added plaquenil (100 mg BID) to her biaxin two days ago. Symptoms (lyme and bart) are now ramping up. The LLMD said if this happened to decrease the plaquenil to every other day, so I will try that, I don't want her to become too toxic. She has not had GI disturbances since we began treatment in June, or motor tics for a month now (after 4 months of biaxin/rifampin). I see an increase in symptoms if she has a cold, but they disappear once she has recovered.

When DD10 first became increasingly sick we embarked on GFCF, then GAPS (did not do the intro, just started with the regular GAPS diet). These did not really help too much with pain, tics or GI problems, but I think the high protein/fat helped her concentration. We then tried low salicylate/oxalate which further helped concentration (though it still waxed and waned with the other symptoms), but not with pain, ticcing or GI. At the suggestion of an allergist we tried an elimination diet, but did not see significant improvement on 2 weeks of on lamb/rice/pears and still had all symptoms. Only ABX, long with Byron White, detox homeopathics, transfer factors, Interfase, Boluoke, probiotics, methylfolate/B12, liposomal glutathione etc. has improved her symptoms. We remain on GFCF/high protein/high saturated and omega3 fat diet to decrease inflammation.

Shin pain, along with many others was one of my DD10's presenting symptoms for lyme/bartonella. It factored in her initial herx when she started on biaxin/rifampin. The worst was 2-3 weeks into treatment, and lasted for about 1 week. After 4 months on rifampin most of her symptoms have resolved, although she is starting to have more lyme symptoms (joint pain, tingling in extremities) that she did not have before. Her LLMD started her on A-Bart after discontinuing rifampin to keep addressing bartonella. When I tried to ramp up too fast the shin pain/headache/stomach pain/motor and vocal tics all returned within 20 minutes of the highest dose. We backed off and they have resolved. No suggestions really - we do the epsom salt baths/lemon juice/probiotic/and also some psyllium to keep things moving along.

This in vitro study found that milk thistle significantly reduced the activity of CYP3A4 enzyme in human hepatocyte cultures: http://www.ncbi.nlm.nih.gov/pubmed/11038151 This study found that milk thistle and black cohosh appear to have no clinically relevant effect on CYP3A activity in vivo: http://jcp.sagepub.com/content/46/2/201.abstract My DD10's liver enzymes were elevated after taking bactrim. After switching to biaxin and rifampin and taking milk thistle daily they returned to normal. Whether it was the switch to biaxin/rifampin or the milk thistle, I am not sure. I showed these articles to my LLMD when she suggested milk thistle with rifampin, but she said to go ahead with the milk thistle. We have had no problems with liver enzymes since.

My DD10's LLMD switched her from rifampin for bartonella to A-Bart on Oct 12. My daughter seems to be at a point where her symptoms only show up in the evenings or when she is fatigued from physical exercise. I was given instructions to increase from 1 drop 3x daily to 10 drops 3x daily, increasing every two days. She was not showing much reaction and her symptom profile was remaining pretty constant until we reached 7 drops. 15 minutes after 7 drops in the am she developed shin pain, pick-like headache, pretty severe stomach pain and ticcing. I gave her a two day break after that and started back at 3 drops 2x daily, last week was 6 drops 2x daily, and today we have started 7 drops. For the last 5 days she has had no symptoms or ticcing, even in the evening or after running for an hour after her friends. Hope I am not jinxing things. She is still on biaxin for lyme.

I think the Mom's do feel the pain more. I was always looking anxiously out the window to see if DD9 was playing with the neighbourhood kids, or sitting by herself in her own distracted little world, or screaming and crying that the others were not behaving properly and that she wouldn't put up with it. It has taken 5 months of lyme/bartonella treatment but she actually has some friends in her class. She can play appropriately with the kids next door and not rage about misbehaviour. She said to me the other day that it was easier to make friends now, but I don't think it bothered her too much when she was sick because she was too distracted and raging to truly notice. I agree with the idea of joining girl scouts. I think it helps them to understand social interaction, and there are lots of different types of kids there - some may be more understanding of your daughter's problems. My daughter made one of her best friends at Brownies. The girl had been DX with high functioning aspergers and they got along like peas in a pod. It was kind of crazy when the friend came over to visit, with lots of upsets, but happy times too.

Between the time my daughter was bitten (2009 7yo) and when her pain symptoms started (2011 9yo) she displayed a lot of ADHD symptoms with some social regression and rage at frustrations. She also forgot how to use a pencil in grade 4. She was very forgetful and easily distracted. I had to remind her to clean up her room, get dressed for school etc. 5-6 times before it would be accomplished. Usually I would just give up and put the clothes on her myself. She was always late for the bus, it was like herding cats to get her out the door. At school she had to join the remedial class at lunch time because the special ed teacher there would remind her to eat lunch. If she stayed in her own class she would be distracted by books/drawing etc. and forget to eat. The dog would actually wait to eat until she got home in the afternoons, because he knew that he would be getting her lunch on his kibbles. I would have to go back to the school to retrieve forgotten homework every day, even though she had noted it in her agenda. After 5 months of lyme/bart treatment she does things before being asked (clean room, set table), is more age appropriate, deals with frustrations better, remembers her homework, has had a huge improvement in writing ability, and the motor/vocal tics have disappeared - Yeah!. I don't think this was just a case of sudden maturation.