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Yes, Biaxin here, too-- this was what she was on before we completely went off 2+ months ago (Amoxicillin and Biaxin) *sigh* Guess it just drove it all into cyst form, now it's out- the Risperadone is no longer working (put her on that when we went off antibiotics and herbs) So tough. Hope to see some improvement - Thanks for your help--

Well, great! Nice progress :-) Believe me, I know how frustrating the setbacks can be- yep, it's better to look at the overall picture, but yikes, in the thick of it, just want out. Yeah, I can't find very many Cowden testimonies either--looks good on paper though- I will say, I do like the Burber and Parsley to help detox. So, dd is back on Amoxicillin, I'm going to be brave and try Tindamax on weekends, and mix in A-Bart, and I have Beyond Balance Bar-1 for Bartonella here, too- and going to buy the Pekana 3 for detox- she does better on the homeopathics than I do- Wish me luck, nice catching up---

Hey Momcap- Did you ever try the Cowden protocol? My dd7 has been in a significant flair/relapse, I've put her back on antibiotics- Lyme treatment. I looked into Cowden last week- 4 dosing times a day, specific herbs covering the co-infections too- 6 month condensed protocol = $1,700 (estimate, and at adult dosage) Anyway, hope all is well there, wondering if anyone had feedback.

Oh dear. I feel for you. When we went through the mold thing last year, I was over the top with anxiety- the mold inspector was actually a little afraid of me. You are a wonderful mother- you will get through this- one foot in front of the other- Hang in there---- P.S. Before my dd could swallow pills well, we got her Azithromycin compounded liquid-

Last year, when we didn't have prescription coverage (because we had Kaiser) I found Costco pharmacy had the best local prices by far... This year, we switched insurance as of January 1st, and kid you not, hit our $2,400 deductible by Febuary 1st!

The famous Dr. J says yes, in regard to gestational lyme in babies- major sign, poor muscle tone.

Yes, this is my daughter right now- other child had a virus (not strep, I checked) and my dd7 is reacting in a flair- but doesn't have the virus.

It was funny, and a little too familiar! Hope your recent vacation was good!

**I did share sometime back on the Lyme board our decision, it's a rather long story, and may not be appropriate for these forums (infection based treatments) My dd7 did have a good summer- we had a viral thing come through the house a few weeks ago, and we saw a flair for the first time in months. Basically, my dd started 'treatment' when she was 4 years old- so 3 years, beginning with DAN! (biomedical protocols), then PANDAS, then 2 LLMD's. Our family hit a huge crisis this Spring. Either on or off antibiotics, we were in dark days. My whole family was very affected. A specialized pediatric Dr. suggested Risperadone (first time we tried anything, never even tried SSRI's.) It worked. Stopped antibiotics and herbs, stopped special diets. I am not saying we are staying here forever- I don't know. I suspect if I had real courage, I'd get the Advanced Lyme test and see where she is at, or maybe the Galaxy lab draws for Bartonella since she's off antibiotics. And since I am spilling my guts here, I will say I have spent over $80,000 dollars in treatment for this child, and don't have stamina to go back to work. It is incredibly sad to me this seems to be a rich parents affliction- PANS. But more importantly, the risperadone worked. No violence, no verbal attacks, not drugged, personality genuine. She has always done well at school- excellent grades and behavior there- only at home the issues. She has never suffered body pain. So I am not sure what the future treatments may or not be.

No tomatoes, Pow Pow. My dd has had Lyme treatment, and honestly, I don't know if I will ever put her back on it. So, tomatoes to me too, especially as I am someone going through big time Lyme treatment myself! As for the Lyme test results, what I see: You only had band 31 IND as a Lyme only specific bacteria band (and the Quest WB had absolutely nothing on it, right?) You had the band 31 retested, and it came back negative. So.....band 41 can also be H pylori. Fatigue is definitely a symptom of Lyme, but other stuff, too- low iron, thyroid, etc. Is there excessive sleeping? The new Advanced Lyme test, where they actually culture the blood for Lyme spirochete, is very accurate. BUT, have to be off antibiotics for 4 weeks.

Hi- well, sounds like you are doing a stellar job getting all that stuff in and on. So hard with kids, I know. The brand 'Penka' makes some good drainage remedies (the 'big 3') I have here Antitox Gentle Drainage, and, Penka Itires (lymphatic drainage) I'm not saying they're magic potions....you know, nothing's that easy with all of this.

I'm so sorry--- What are you doing for detox? I have had both the crazy, maddening itching, and a lump come up on the side of my neck- My LLMD at the time said I wasn't detoxing enough- was put on cholestrymine powder (binder, prescription) and the lump went away. Other binders are charcoal, bentonite clay (away from everything, sure you know all this) Keep the bowel moving... For the itching, I took Epsom and dead sea salt baths every night- honestly, natural anti- itch creams did not help me, I did buy off the shelf hydrocortisone 1% cream- I think it helped a little- the itching phase passed. Currently I do milk thistle, glutathione, NAC, a little ALA, and go on and off the Epsom salt baths for detox. If I'm feeling really bad, Banderol and parsley drops, homeopathic drainage remedy, alka seltzer gold. Hang in there---

I currently take Bolouke for biofilm, and have some Klaire Interphase Plus here, to give a try in the next few weeks. I think the Bolouke helps the antibiotics penetrate deeper. You could ask your LLMD about it- Are you doing things for detox? Hard with a PANS child, I know.

I bookmarked that link- I should do the A-Bart challenge, I really cannot figure out where my Bart is, but have other treatment 'plans' laid out over the next few months. My LLMD recommended 20 minutes apart between the drops- some literature I've read suggested longer, but this Dr. said 20 minutes.

Sounds like you are doing it exactly right- I am pretty sure my LLMD recommended holding it in the mouth for a moment, if possible. Before I heard that, tho, I slammed it down like a shot. Not sure it made a difference, as they are not really considered homeopathic.

For myself, I would fill 1/2 a shot glass with water, add the drops, take it- hold it in mouth, under tongue for a minute ( seconds) swallow. For dd, I had to give them to her in an oral syringe - mixed with water- went fast, let her chase with a drink. I thought the challenge was a big dose? Don't know if you'll feel anything with 1 drop. At my best (while on prescriptions, too) I was doing 10-12 drops 2x a day. Also did Bar-1 (Beyond Balance for Bartonella) I think one mistake I made while treating Bartonella was my previous Dr. pulsed me on Rifampin- wished I would have stayed on it for some months- I did Levaquin for about 6 weeks- then pulsed Cipro and Rifampin, which I feel the pulsing was a mistake.

I have been on the drops, and for me, they are pretty immediate- also when dd was on them, same thing- die off/feel them in the same day. I do think they will clear in a few days as well. I'm curious how you do- I treated Bartonella last year, but also don't think it is gone- Currently and have been for awhile now working on Lyme (Bicillin shots and Tindamax) and rotating other medicines and herbs for protomyxzoa/biofilm which I came up low positive through testing with Fry labs. Again, really interested how the challenge goes---PV's---

Julia, glad to hear your son's progress! Also wanted to add I personally picked up a bottle of prescription Alinia through my local drugstore, no issues.

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.

Sorry- no post, mistake. I was going to suggest yeast, but then re-read it started day 4 of Azithromycin, had been on Aug. with no issue.

I would agree, Yes and Yes. Lyme does cycle every 28 days, the co-infections more rapidly. I think any time the immune system takes a 'hit', whether it be added mental stress or another physical ailment coming into play, it can bring it forward.

Well, since you already bought it, yes, give it a try! It is magnesium citrate (if I remember correctly) so may move the bowels. Not to discourage you, because all the kids are not the same, but after school was the 'worst' with my dd- she would hold it together all day there, lose it literally at pick up with me. So I did try a huge Kids Calm drink to have for her in the car- at that time, it wasn't the solution.

I have an Enhansa story. By the way, have you read the fact sheet on it from Lee Silsby pharmacy/Our Kids ASD website? Pretty informative. I did a protocol with dd with it 2 years ago- now, she had a phenol/stalactite issue at the time, so I thought it made her hyper, but I pushed through. Got to the highest dose, combined with vitamin C about 2-3 grams a day, and we got a huge viral die off- chicken pox sores started on the top of her back, and worked their way down her entire body for 1 month (while continuing the protocol.) I took her to a Dr. to view this rash, Dr. says: 'Huh! Looks like chicken pox!' And gave me no advice. She had been fully vaxed for chicken pox. After that rash left, 1 month long, I tapered her down off it. So, IMO, it can hit viral. Now, for myself, I have been using Longvida brand curcumin - 1,000 mg a day, every day, for about 12 months now. I went off it 2 nights ago because I am having a minor 'procedure' on Friday, and the next day I got a wicked migraine (no other changes) I wonder if that happened because the inflammation was being controlled by Longvida? My little ..02 cents. Build up on the Enhansa- I would buy the bottle of 150 mg. caps so you can titrate up.

** I am thrilled he got better at 18. It's just my personal opinion about a book, completely shadowed by the fact at the time I had a 4 year old child suffering greatly, and perhaps took it as, there is nothing that will work, nothing I can do until maybe she prayerfully grows out of it, when she is an adult. Not sure my family could have gone on at the place we were at for another decade or two- incredibly painful. Still a little tender for me- no disrespect.**

I realize it was a true story- perhaps my dislike for it was the child suffered horribly for years (close to home) Then, and it's been a while now, so this is the impression I am remembering, it was like: Poof! He turns 18 or something, realizes he can control this somehow, or he somehow grew out of it. I didn't find that story a good example, KWIM? JMO.