SSS

Systemic enzymes: Wobenzyme http://www.gardenoflife.com/ProductsforLife/SUPPLEMENTS/ImmunitySupport/WobenzymN/tabid/1900/Default.aspx

I wonder if anyone has tried Flagyl for their child instead of Tindamax and found it more tolerable? I always keep probiotics cold- even if they weren't cold shipped. Good ones without strep strain: Custom Probiotics CP-1 (does not require cold ship) Klaire Ther-Biotic DETOX Theralac Culterelle (does not require cold ship, 1 strain only, 10 billion, but I like this one too)

Just want to add: Whatever test you decide on, ALWAYS make sure you get a full copy to double check yourself. Lyme sounded insane to me. My sheltered, never been camping, never had a pet, non-endemic area living 5 year old? What? On a 'whim' I found a labcorp WB test online, no Dr. signature required. Took her to the local lab for blood draw. Only 1 band came up positive on the Labcorp test: positive band 23. I wanted very, very badly to ignore that. Try explaining to my husband, after we've dropped over $50k at this point chasing treatments, guess what, she has Lyme disease, need a $1,000 appt. with a LLMD and more tests. Right honey, the labcorp test says negative, but you see, band 23, blah, blah, blah. And you can see by my personal signature here how that first appt. went, and what I found out. By the way, there has been more than one time on this journey I have 2nd guessed, I have wanted to believe (in our case) 'It's just autism'. Because it is really hard. This is the hardest thing I've ever done, and I've done hard things. But then I do nothing, I do take breaks with dd, and it's harder. And I have a good cry, think about what if I look back with regret about not doing enough, what if I can save/ help this child more, and try again. One foot in front of the other.

You are asking for opinions, so I will give mine- I would check this child for Lyme, Bartonella, Mycoplasma. Based on the few posts of yours I have read, your timeline and information in your signature, and similarities in my own child. Our 2nd HD-IVIG was like sheer magic out the gate. Happy, content, social: WOW! Until it started to wear off at 6-8 weeks after, as the donor antibodies left the body. She was not in school or 're-exposed' to strep- believe me, I had everyone in my house have their titers pulled, and no pets, kept that child sheltered I wanted it to work and last so bad. We had to pay cash for HD-IVIG's, and even if I were rich, I was not willing to do IVIG's every 6-8 weeks. It was then we looked for further infections, and found them. We had tried a 5 day steroid burst before IVIG's, and it did not go well at all- So, not every unsuccessful steroid burst equates unsuccessful IVIG or equates no PANS.

And, were ALL 900 tested for Lyme? I doubt it. Our PANDAS treating Dr.s (one treating, one I used for phone consults/2nd opinion) never once mentioned Lyme disease. I only tested dd on a 'whim' because of the link/talk on this board. Frankly, Lyme disease sounded crazy to me.

Thanks rowingmom! Honestly, I thought it would be more than 70 with Lyme out of 900. Not to be cynical, but I bet they were tested on the ELISA test, which is pretty inaccurate. (State of VA has a new law about document given to patients with results of ELISA test- stating high false negative %)

What a GREAT post! :-)

Cobygurl, it is a difficult decision, treat or don't treat- no-one can make it for you, and valid points about possible future antibiotic use. I've read a lot about Lyme and people's experiences with it, while going through treatment myself, and it can happen- an antibiotic waking up the bacteria. I've read of another person who went through treatment, completed and recovered/ remission, years later major sinus infection and took serious antibiotics, and Lyme and co. did not resurface for this person. I will say this: the Lyme herbs can activate and herx bacteria just like antibiotics. The Cowden condensed protocol is the same for adults, we were advised to 1/2 the dose for my dd's weight (about 50 pounds at the time) Cowden's website has forms you can download, or you can call them to email.

My DH took a week off last month while the kids were in school, and he and I did some daytime activities together while all 3 kids were in school (finally have all of them in full day school) We don't have much money left, so things like a walk through a gated high end housing community admiring the architecture in the sunshine, trip to the local Indian casino we'd never been to for lunch, visited and walked around a new outside mall with a Whole Foods, etc.

LLM ((hugs)) Just wanted to point out, the blog entry posted was from 12/2012 and the sweet beautiful girl has had PANDAS issues since removing all the probiotics. I only point this out because when I read the blog article posted, it read to me like removing the probiotics was the last step, and this child was fully recovered. Which I wish she was, like all the children here and my own.

My opinion, if you have no symptoms for Lyme or PANS, don't treat. That was also the opinion of our LLMD, no symptoms, don't treat. Keep healthy as best you can- like you are- wonderful :-) My dd did start the Cowden condensed (yes, symptoms and PANS) did okay for full 2-3 months, but then it became very difficult and we discontinued. I also used Samento and Banderol at one point, full dose, and those herbs certainly have merit (an affect on Lyme bacteria) But knowing what I know now, I'd let sleeping dogs lie when it comes to Lyme and co. if you are okay- The body is handling it.

Sounds like you are being bullied :-( Do you have religious exemption in your state?

I don't believe Dr. K tests for Lyme and co- infections... I'm sorry, I don't know if you've checked into that- one thing we experienced with a steroid burst, even if an infection such as yeast/ candida/ gut bacteria is present, we did not get relief from the steroid burst, belief being it suppressed the immune system and allowed any present infection to worsen. I'm sorry for all you've been through recently--- good thoughts-- know how hard it is and can be.

My dd had selective mutism at age 3, and would only whisper to me in my ear in front of anyone else, and would only whisper in her preschool teacher's ear at this time- could not speak in the class (I put her in part time preschool to help social issues at age 3) What turned it around was going GF/CF - 100% Looking back, I believe it reduced inflammation for her-- her eyes became un- dialated after a few weeks on the diet- I had no idea they were dialated until I saw them go back to normal. Not sure if this helps---I guess I am saying reduce inflammation some how-

Congratulations! Here is information I am pasting here, these are not my own notes, FWIW: Here are my notes from Dr. J.'s talk (world famous pediatric lyme specialist) at the Toronto ILADS conference the other day. 2011 ILADS Conference, Toronto, Canada Pregnancy & Tick Borne Diseases: Gestational Lyme Dr. J. 10/28/11 Impulsivity is an earmark of children born with lyme. Lyme is a multi-system disorder. It can wax and wane and change. It likes collagen (valves--like heart valves, etc.), nerves, and joints; it is almost always tick borne. HIV, CMV, any infection in the mother can be transmitted to the fetus. If lyme is transmitted, you will see severe hypotonia (floppy baby), child will be irritable, tire easily, sensitive to light, noise, skin. The hypotonia will cause trouble sucking due to the lips being floppy. This can improve as time goes on. 30% of these children will have developmental delays. Tissue PCR biopsy is more likely to be positive rather than a test of bodily fluids (blood, urine, spinal fluid, etc.). Test placenta and foreskin remnant. Some of these children are classified as autism spectrum early on due to their failure to progress. These children do NOT experience regression as is often seen in autistic children. If antibiotics help them, it points to lyme as the true diagnosis. He described 2 patients. One little boy ran around his office. He had never spoken. It was doubtful that he could understand what others said. But Dr. J. noticed that the boy made good eye contact with him, which autistic children will not do. He took his face in his hands and said to the boy, �I am going to unlock your brain.� The next time the child returned, he ran to Dr. J., put Dr. J�s hands on his face and said, �Thank you for unlocking my brain.� The other boy had committed a long list of crimes, the most serious of which was attempted murder of his mother, and was about to be removed from his home due to his crimes. The boy announced that nobody was taking any blood from him. Dr. J. gave him a choice--either give blood or have a wrestling hold put on him. He put the hold on the child lightly and the child asked for him to stop. Then, he jumped into Dr. J�s lap and hugged him (while Dr. J. patted him down for contraband) and cried profusely for about 2 minutes. When asked why he was crying like this, the little criminal said, �Nobody has ever given me a choice before!� This boy was diagnosed with lyme thanks to the persistence of his mother. Treating the pregnant mother: There is less than 1% transmission of the illness if the mother is treated with 2 antibiotics during the pregnancy; 25% rate of transmission if she is treated with just one antibiotic; and 50% rate of transmission if she is not given antibiotics at all. It doesn�t matter what trimester the mother becomes infected. These are the statistics. A baby born with babesiosis is in really bad shape. He told of one with heart and numerous other serious problems who was given numerous transfusions at birth, plus atovaquone and azithromycin and is now well. It took 1 week to see great improvement. Some medications he suggests for the pregnant mother include 1,000 mg amoxicillin every 8 hours for months, also mentioned IM (intramuscular injections), ceftriaxone (? not sure of this--something that started with �ceft� but not ceftin), etc. The mother can only breast feed the child if she is on antibiotics. Then, yes, it is fine to breastfeed. He mentioned that a lab known as Advanced Laboratories can now culture for the lyme bacteria. Western Blots test only for exposure, so this is a much better test. He said that a father can infect a mother. In in vitro fertilization, a father infected the embryo, but it was not part of a study, just anecdotal. He quoted Dr. H., �If the mind doesn�t know, the eyes don�t see� to explain how lyme can be missed in these children so that they are misdiagnosed. One month of amoxi should be given to the mother if she is bitten while breastfeeding. To treat bartonella in children, give them zith and/or Bactrim, ciprofloxacin in an older child. Antineuronal antibodies can be found in infected children. If they are found, treat the child with antibiotics. The child can have strep antibodies also. He uses various meds including IV gamma globulin, if needed.

Well, I'd thank my lucky stars I had found a product (and just 1!) that worked so well, and did the trick like Augmentin does for your son. You've laid it out pretty clear- If we had 1 product that did all that, I'd be all over it, and don't think I'd give it up. Hard decision, especially with the winter months...

*a CBC test will not show elevated white blood cell counts with Lyme, co-infections, strep- our CBC's always come out 'perfect', have been drawn often, and we have positive infection tests at the same time. The steroids do shut down the immune system, and bacterial and fungal infections can flourish as a result.

Thesuzie, from Long Island, have you checked for Lyme disease? That much pain, etc.

Uhh, yeah, I'd be livid. I've got nothing to add on treating lice, seems the universe knows this will be the thing that finally does me in for good. I have a terror of it. I'd need hefty Valium. Meanwhile I'll look for fairytale products (2 young girls here.) Thanks for the info. Sending PV's and good spells LLM----

Never mind, I think I got it. If you are overweight but have a diet low in fats/ higher in fruits and veggies, the transfer of 'thin bacteria' could help you lose weight, keep eating the way you were. If your diet is high in fats, 'thin bacteria transfer' won't work.

**when I pull up the study link, it has this: 'Results and Discussion The intact uncultured and culturable bacterial component of Ob co-twins fecal microbiota conveyed significantly greater increases in body mass and adiposity than those of Ln communities. Differences in body composition were correlated with differences in fermentation of short-chain fatty acids (increased in Ln), metabolism of branched-chain amino acids (increased in Ob), and microbial transformation of bile acid species (increased in Ln and correlated with down-regulation of host farnesoid X receptor signaling). Cohousing Ln and Ob mice prevented development of increased adiposity and body mass in Ob cage mates and transformed their microbiotas metabolic profile to a leanlike state. Transformation correlated with invasion of members of Bacteroidales from Ln into Ob microbiota. Invasion and phenotypic rescue were diet-dependent and occurred with the diet representing the lower tertile of U.S. consumption of saturated fats, and upper tertile of fruits and vegetables, but not with the diet representing the upper tertile of saturated fats, and lower tertile of fruit and vegetable consumption. These results reveal that transmissible and modifiable interactions between diet and microbiota influence host biology.' I thought that said it didn't matter the diet? Otherwise, kind of obvious?

Well, I'm going to do my detox speech, because it sounds like you are hitting a big infection, which releases toxins in the body- these things can help- Good nutrition- eat 'right', eat good food often, no or very low sugar A quality probiotic taken 2-3 hours from antibiotic Epsom salt bath- 2-3 cups, very warm water, at least 20 minutes Walking, circulation to light sweat Glutathione - liposomal glutathione supplement Make sure your bowels are moving regularly - magnesium citrate can help-Natural Calm drink Lemon water- drink 1/2 your body weight in ounces of water a day Alka Seltzer Gold Massage - gentle, if not used to getting them- foot massage Sleep Positive affirmations - I have some memorized, and take time to get quiet, sometimes facing the sun, and center myself. * Edit to add: Liver detox. Milk thistle supplement, ALA supplement, NAC or Curcumin supplement - Castor oil packs (google - ) Hope you feel better-

I'm so out there, I read it and thought: Did they check the 'thin bacteria' for parasites?

warning, strong opinion ahead! Amoxicillin is useless for Strep, and IMO, doesn't wipe it out, and may possibly makes the strain stronger. The first time my dd had strep, she was 3, I was trying to keep my career, and put her in a child care center, and she caught a wicked strep- stopped talking, eating, literally just cried in pain- for days. I was given Amoxicillin- I just assumed it cleared it, never re-checked, etc. I knew nothing about strep, PANS, infections, gut health- I don't think it ever really cleared it- (we have since gone back and treated infections with higher antibiotics) And, strep can reside in the GUT. Not just the throat. If your child is displaying PANS symptoms from a strep infection, that tells me, IMO, it's a pretty heavy infection going on.

I'm not sure what I think of this topic, but Custom Probiotics (one of my favorite brands) does make a 'd-lactate free' http://www.customprobiotics.com/custom-probiotics-d-lactate.htm