rowingmom

As for the diet, you need not starve. Just make the switch to unprocessed foods, its not scarey, just takes some change of mind over what food actually is. A couple of sites to get you going: http://www.marksdailyapple.com/#axzz2LRivPA1w http://perfecthealthdiet.com/ http://www.terrywahls.com/eating-the-wahls-way

I saw a comment this morning left by Ellie2008 about PANDAS. Left side of the page under the Good Morning America symbol. Most will probably not read the comments, but I would think the Morrissey's would probably check them.

I have a daughter. No migraines, IND lyme, positive bartonella, symptoms flare with strep infection.

maliee, could you elaborate please? Thanks to you and LLM for the articles. DD11 is positive for bartonella, IND for lyme, negative twice for babesia (igenex) with no real babs symptoms (they all seem to be bartonella). Her bartonella titers are decreasing with treatment. Rifampin/biaxin decreased her ticcing to a good baseline (but still there). Azithromycin/minocycline was a pretty good combo as well, but it wasn't until we added malarone that everything (ticcing, age appropriate behaviour) has improved greatly, tindamax causes herxes. She has a terrible affinity for cats. She crawls all over them, lets them lick her mouth and face. I have to pull her off every one she sees, it's just nasty. I can't let her go to the homes of friends with cats, because she is so inappropriate with them, and it doesn't matter what I say to her, she can't keep herself away. Anyway, it makes me wonder about toxo. She definitely fits the female behavioural profile for the infection.

I am interested in the references for these studies as well. The effect of gut health on the immune system and hormonal functioning is not really general knowledge yet. Our LLMD does not even prescribe probiotics for our DD11 who is on a multiple abx protocol. I have seen mentioned that some strains acquired at birth and in early childhood prepare the immune system for proper functioning, but really nothing else. We use probiotics to help maintain gut health, but that is as far as my knowledge goes. Is it even possible to replenish proper flora after multiple rounds of abx? Any information is appreciated.

You son's symptoms sound very similar to my DD11's. If you want to pursue PANS/PANDAS involvement, you will probably have to find a specialist. Not many pediatrician's will be open to, or are familiar with the testing or diagnosis, and will be next to impossible to convince if they don't agree with you. Please don't waste time and find a PANS doctor or LLMD in your area.

So wonderful! Perhaps the treatment has done it's job and it's time to withdraw abx! I would talk to Dr B about a trial without to see what his thoughts are; perhaps just using anti-inflammatories and detox/methylation/herbal protocols if you use them. Keep an eye out for relapse, it can sneak in slowly. We tried discontinuing one of two abx at one point earlier in DD11's treatment, but after about 3 months her symptoms had all returned. We did not wean, but stopped cold turkey, that might make a difference in the response of the immune system. We keep a daily chart of key symptom levels to visually see what is happening.

Good for you for sticking to your guns and insisting on the CT scan. Doesn't it feel horrible when doctors laugh...if only they knew what we know, and had been through what we have. You are a great mom!

We avoid cow cheese because the casein fraction can be inflammatory. DD11 does use some romano (sheep) or goat cheese sometimes. I can't say that I have seen a difference in her behaviour one way or another. I know if I eat too much brie (yum!) the joints in my feet hurt. Goat brie not so much, but it doesn't taste as good either.

When we started treatment DD11's first herx was her worst one. It lasted a couple of weeks, and to make matters worse I knew nothing about detoxing, or helping the body to get rid of the toxins produced by her treatment. Epsom salt baths work well, as does lemon water sweetened with stevia. Keep the bowels moving with chia or psyllium. Some use clay or charcol supplements to bind toxins in the digestive tract to keep them from re-entering the body, but I prefer just to move things on out. Search "detox" and "herxing" in the lyme and pandas/pitand forums here. You will find a lot of information. Addressing inflammation caused by toxins is helpful as well. Many parents use motrin as an anti-inflammatory during flares.

Wow, wonderful publication! Thank you for sharing.

I really can't bring myself to think about that, and prefer to think that the drastic increase of immune suppressing multiple vaccinations begun in the 70's is responsible. http://vran.org/about-vaccines/general-issues/doctors-speak/vaccines-and-immune-suppression/ References at the bottom of the article. "The capability of the measles vaccine to suppress cell-mediated immunity has been known for decades" "study showing that the measles virus infections caused an IgE switching of nuclear material in B-lymphcytes, the authors found that the same switching took place from the MMR vaccine leading to an increase in the expression of IgE (and by inference away from the protective IgG and IgM antibodies)". In this intro, Dr Theoharis Theoharides suggests: http://www.mtlautisminmotion.com/speakers/dr-theoharis-theoharides/ "Recent evidence also indicates that many ASD children present with “allergic-like” symptoms that imply activation of a unique immune cell, the mast cell, which is activated by allergic, environmental, infectious, or stress-related triggers to release pro-inflammatory and neurotoxic molecules" We definately show some symptoms of allergy (dark circles under eyes, PANS symptom's improvement with anti-histamine dosing). I like to think that if somehow I can address DD11's immune system, the problem will be solved. There are so many older people (grandparents etc) I know that have been exposed to lyme and live in endemic areas (Thousand Islands St. Lawerence River, Long Point Ontario), EM rashes and everything, that just do not have the symptoms my daughter has. Total loss of speech, gross motor abilities with MMR vaccination, MMR/DPT booster the same year as insect bite (atypical rash), and one month later motor ticcing begins. Perhaps infection with a native strain would give protection against a more contagious, bio-engineered one. Here I go...over the edge.

Can I ask what the lupus-type reaction involved? After several months of pulsing abx, including minocycline, and reaching a wonderful low baseline, DD11 is having an increase in ticcing as well as symptoms of diffuse itchy skin in the evenings. Trying to figure out what is causing it. Her LLMD has discontinued all abx except tindamax and LabCorp is not allowed to run candida antibodies in NY state. We did liver enzymes today, so will know those results soon. Sorry, no experience with doxycycline. Have you introduced any new supplements? First, I should say that dd made great strides on the minocin (as part of an abx combo). She was on it for 8-9 months. Also, not 100% sure it was the minocin that caused the lupus reaction. Only way to find out would be to introduce it again - not willling to go there. labs: +ANA, +DNA AB (DS), high PTT LA Screen, high DRVVT screen, + hexagonal phase, elevated sed rate & c-reactive protein, elevated lft's symptoms: extreme leg/joint pain, fatigue, butterfly face rash, raynauds, cold all the time, couldn't be in sun, erythema nodosum Thanks for your response. After seeing your posting I browsed a little and did find much mention of minocycline/lupus type reactions. The only thing that was suggested by the LLMD was 1 drop of GSE on the toothbrush after brushing, rubbed on the teeth and gums to help with dental plaque. The day I started that was the day we started having problems with ticcing/itching.

Can I ask what the lupus-type reaction involved? After several months of pulsing abx, including minocycline, and reaching a wonderful low baseline, DD11 is having an increase in ticcing as well as symptoms of diffuse itchy skin in the evenings. Trying to figure out what is causing it. Her LLMD has discontinued all abx except tindamax and LabCorp is not allowed to run candida antibodies in NY state. We did liver enzymes today, so will know those results soon. Sorry, no experience with doxycycline.

I think I would stay with the LLMD for lyme treatment protocols. I'm not sure a DAN would be up and running with those. You say in your signature line that your DD is finally functioning after 13 years. I don't think I would give up the lyme specialist just yet.

Thank you...

I also felt this way for a long time, until I read this: "Perhaps most surprising, researchers found the genetic footprint of bacteria known as Borrelia burgdorferi in his DNAmaking the Iceman the earliest known human infected by the bug that causes Lyme disease." http://ngm.nationalgeographic.com/2011/11/iceman-autopsy/hall-text The borellia bacteria has been with us for a long time. Just my thoughts: many people are infected but asymptomatic (perhaps the reason for the failure of the lyme vaccination trials - many previously infected undiagnosed people reacting to the injection). I remember our vet telling me once that an animal will react to a vaccination if the animal is already infected. Don't you love vets? If the immune system is strong and uncompromised the infection will remain asymptomatic. Something is happening with our children. Multiple vaccinations given to immature immune systems, pesticides, metals and other environmental pollutants, an evolutionarily innappropriate diet (humans evolved over millions of years, but industrially processed GMO grains and other food full of pesticides are the norm for people now). There has been a big increase in rates of autism and various autoimmune diseases in children. Immune systems are becoming compromised and infections are gaining a foothold. How we go about fixing this, I don't know. Thank you so much for your well written summary, so familiar to many of us trying to find some answers. My husband usually leaves the researching to me and doesn't overly involve himself with our daughter's treatment. I think he is still trying to wrap his head around how all of this can even be possible. I don't often try to get him to read postings on the forum, but he read this one. After reading your summary, he suggested that I perhaps exempt our 16 year old son (not showing any symptoms) from his upcoming round of vaccinations until he is older and his immune system is more fully developed. My thoughts exactly. Yay! Thank you.

Do you think it could be die-off from some improvement in his immune system? It's so hard to tell die-off from adverse effects. I wish things were easier.

Not sure if any of this might help: http://www.gaps.me/preview/?page_id=20

Please do keep us updated. The results will be interesting to a lot of folks I would imagine. Glad that Deseret is still working for you. Have you tried A-Bart and A-L (for lyme), and did they work for you? Thanks.

Lilly - Powdered metamucil is quite detectable. It starts forming a gel almost as soon as you add water to it. If you use cold water the reaction is slowed a bit, but not much. In this case you might want to try the capsules with lots of water to swallow.

Another route might be father to mother to son. If the immune system is functioning properly an infected person might not necessarily show symptoms.

To keep DD11's bowels moving I use 1 tsp psyllium husk daily or every other day, a couple of hours away from other supplements/abx. We use Metamucil brand, the colourless, flavourless, smooth mixing kind. Mix in 1 cup of cold water and drink quickly before it starts forming a gel. 1 tsp of chia seeds (I use it in smoothies) also contains a good bit of soluble fiber and will help to keep the bowels moving. We have never had luck using just probiotics to get the gut moving and have used some type of soluble fiber from the start.

The ILADS website can recommend an LLMD in your area affilitated with their association. Sorry, I can not suggest one, ours is in Buffalo NY. Others will chime in - I think there are some good LLNDs out there as well.

A little rebellion - good for him. I think kids need to find things out for themselves and until they can do this they aren't really capable of looking after themselves. It sounds like your son's citrus experiment turned out poorly - maybe he will take your suggestions about diet a little more seriously now. So glad you found out the reason for the lip inflammation. I know every sniffle, itch or isolated tic makes me crazy thinking about what could be happening now!