susie

Wendy, Thanks for the info. What do you mean by a "shot" of the lymphomyosot? Is this the homeopathic oral drops you're talking about? And why every other day? My daughter's lymph nodes in her neck have been hard and swollen her whole life. I'd love to get them to drain. I may give this a try!

I was at Dr. K's May seminar also. A home inspector spoke about EMFs and RF's in the home. When he spoke about the grounding sheets, he said that they do indeed bring body voltage way down, but unless you turn off the power to the room, your body basically becomes a conduit to ground all the extra EMFs in the room. So, he said both are needed. I don't really know where he got the information, but it did seem logical. I have a grounding sheet and haven't really noticed much improvement in my own sleep or pain levels. My daughter sleeps on one too, and her sleep patterns are no better. Maybe they're helping in some other way, so we keep using them.

GABA from Thorne has worked for my daughter in the past. It had to be Thorne brand becuase theirs is a natural GABA which worked pretty well. By contrast, the cheaper GABA from the health food store seemed to make her anxiety worse (and it definately made mine worse). I was giving her 250mg caps twice daily. They use veggi caps. http://www.thorne.com/Products/Mood-Sleep-Support/prd~SP652.jsp

any new meds or supplements added around the time that it started? I wonder if it could be due to her normal skin flora being altered by antibiotics. Is she on plenty of high quality probiotics?

for those who have done Dr. K's parasite protocol, did they prescribe a full adult dose of the Alinia for a child? My daughter is 7 y.o. and weighs 50 lbs. The pharmacist called to verify the order and was told that it is correct and to fill it, but they will not do it. Anyone have experience with this?

I'm thinking she's better off without it. I'll let you know in a few days if it's just coincidence.

We just stopped Biaxin 2 days ago after several months on it and I cannot believe the positive difference in my child's mood. She is seeming so much happier and less anxious and more "with it". I've been racking my brain trying to figure out if there's any other factor that could have caused such a difference and I'm not coming up with much else. The difference is remarkable. I just looked up side effects of Biaxin, and anxiety and nightmares (she has those too) are both rare side effects. I guess she was one of the unlucky ones.

And to add to Micheals thought: I remember you mentioning that your brother has autism. Many think that Lyme can actually cause autism, so the possibility that you both got Lyme in utero is not out of the question. I guess at this point it may not matter for you which came first, but it could be information that could help your brother and mother.

For my daughter, this exact same thing happened with the Tindimax. She would even need to get up in the middle of the night to eat. She is taking the tindimax on weekends only and the hunger corresponded exactly with the doses. I started filling empty capsules with ginger powder and giving that with each dose thinking that it was nausea that was releived by eating. After about 4 rounds of the tindimax, it no longer has this effect on her. Her tummy flattened out quite a bit since starting it, so I wonder if it had something to do with a parasite that was taken care of by the tindimax.

FYI - just received bill from NJH for the C3a/C4a tests - $159 (~$80 each). You have to pay up front and try to get reimbursed by insurance. Your daughter is a trooper! So did labcorp automatically send these to National Jewish? My daughter had these run several months back and they went to Cambridge Biomedical. Both C3a and C4a were within normal limits, while she had decreased MSH, low VIP, low ADH, and TGF-b1 on the upper end of normal range. MMP-9 was normal. Our docs (2 of them), took this to mean that there was not a mold problem. When I mentioned that it was strange that the MSH, VIP, and ADH all looked like inflammatory mold or lyme illness, yet the C3a and C4a were normal, she said "they're all coming back that way". Makes me question whether labcorp was doing the test correctly at that time and if we were to re-draw now would it be different. I wish Dr. Shoemaker's website was up to date regarding how to do these labs and where to make sure they are processed.

Ok...thanks. I'll have to call and see what test they feel needs fasting. My daughter does better with food in her stomach. Here are the tests checked off on the Shoemaker Physician Order Sheet: HLA DR by PCR, VIP, MSH, ACTH, CRP, TGF-B1 ,MMP-9, PAl-1, Lipid with Phenotype, B-Type Natriuretic Peptide (BNP), C3a & C4a "jewish lab". I just had a doctor sign off on the sheet with all the labcorps test marked. Is anyone running all of these tests? My doctor is willing to order these for me, but we're having trouble with the diagnosis (ICD-9) codes. Some of the codes that Dr. Shoemaker has on the order sheet don't really apply to me. Did your doctor just go with those ICD-9 codes?

You can get the plain unsweetened kefir and add your own fruit and some stevia. My daughter loves it this way.

After starting dd9 on Chlorella, she is (I think) detoxing and I'm glad I started her on 800 mg a day (that is 2 caps of the brand we are using). She got a very bad cankersore, increased senstivitiy to clothes (she felt they were sharp against her skin), very annoyed and irritated, maybe some other symptoms. I'm assuming this is good detox. I am thinking of switching to th biopure since this seems to be working for her maybe we need a better product to really hit this out of the park. How do they taste since they are tablets? One thing is that she is so tired of taking pills, I hate to increase it. Also, Regarding the clay, should that be taken away from all supplements and probiotics? I'm finding it hard to find a time to give it to dd8. Susan I was told that the clay does not bind the probiotics. Douglas labs makes a product with both bentonite and Lactobacillus together, so if you trust this company, then that's a good clue that it's OK. I don't really know about the supplements, but I was told to separate those from the clay.

I've read here that some are taking a cup of bentonite per day. Is that a cup of the liquid stuff? I have the powder from biopure and have no idea how that might equate. What brand is everyone else using? Does a cup cause constipation? Is anyone using chlorella as a binder? If so, do you know if it will bind up meds and supplements too?

Thanks for sharing that. My daughter's doctor plans to prescribe the VIP nasal spray. Were you tested for MARCONS before the VIP spray was prescribed? Dr. K's nurse did a presentation at his conference and mentioned that you shouldn't do the VIP spray if you have MARCONS. No explanation as to why though. So you weren't doing anything else different at the same time (like cholestyramine or mold remediation)?

Thanks for posting this Julia. My daughter had the same panel run by her PANDAS doc who learned about it from Dr. K. My daughter's MSH, VIP, ADH were all low. From what I've been able to gather by reading going to Dr. K's last conference, the MSH is the most important and unfortunately there doesn't seem to be a direct treatment for it besides treat the mold and lyme. At the conference, Dr. K did say something about using Myrrh to treat it, but I think it was more to treat the MARCONS which can set up shop when MSH is low. There was a very loud party going on in the room next to where the conference was being held, so I missed some things (got to hear some Bee Gee's though). Also, his handout said that adding propolis to the "cocktail" helps raise MSH. Is your son still on the cocktail and do you add propolis? We have the propolis vaporizer. The smell is nice and hopefully it's doing what it's supposed to. The annoying thing about it is that when it's cycle is up and it's time to change the capsule, it beeps constantly until you change it. I lasts an uneven number of days (like 5 and some hours) so the time is never the same when it's going to run out. Do you use the bee venom on the neck for CCSVI? That was discussed at the conference too. It sounded like he thought that pretty much all the lyme, ALS,and MS patients had it and all with autism too. I am interested that they diagnosed mold illness without the C3a and C4a being back yet. Our doc thought that since my daughter's C4a was normal, then there was not a mold issue. Our doc is definitely still learning this stuff though. Sounds like yours is too since they called Dr. S. We have the earthing sheet. I didn't notice a difference in sleep for myself or my daughter, but I do know that it lowers body voltage significantly which is good. So, if you have any insight on how to get that MSH up, I would love to hear it.

He also talked about using bee venom ointment on the neck for CCSVI. He wasn't very specific about the amount or frequency if I remember right, but the ointment is available through biopure. I noticed biopure also has a cistus tincture. I wonder if that would be easier to take for a child, maybe mixed in lemonade or something. I like the tea, but my daughter won't touch it.

I would think it's a virus, or maybe even yeast.

How do you decide if symptoms in a child are herxing or just the Lyme going crazy? My DD7 is on Azithromycin and Augmentin daily, and tinidazole on the weekends. Also a long list of supplements for detox and probiotics. So far, the only diagnosis is Lyme, no co-infections. Her main symptoms are/have been tics, OCD, anxiety, defiance, rage, anger, night awakenings, nightmares, and tummy pains. She's been on this combo of meds for several months now and most of the above symptoms have been about 90% better. I've noticed a pattern after her weekend tindimax where the tics will come back very mildly for 2-3 days and her other symptoms also come back in a much milder form than before treatment. This past weekend we increased from 4 weekend doses of tindimax to 6 total doses (3 days). Her tics this week have been much worse and she's been having night awakenings again. Strangely, the other symptoms didn't seem too bad this week until this a.m.. She awoke in a good mood, then about 1 hour after getting up started getting very anxious about what clothes she was to wear today (much of her past OCD revolved around clothing). We got through that, then in the car she had a sudden and very short lived pain on the left side of her head. I asked several times if she was O.K., and she was (quite grumpy by now though). As I write this I'm thinking herx, but I still find it hard to swallow that there are no symptoms of fever/malaise from the Lyme biotoxins. Any ideas? Should I skip this weekends tindimax? Our LLMD is out until next wednesday. I've got a call in to him, but I'm not sure I'll hear back before next week.

Oh My! I also saw that banner and noticed the picture, but did not actually read it. I'm making my donation now. Thanks for your post.

One reason green tea helps is due to the theanine content. I give my daughter theanine capsules.

My daughter seems to have more night awakenings when she's on the tindamax. She usually says she's hungry and wants to eat all day and night while on it, so I'm not sure if it's the tummy problems waking her up, or if she wakes up because of the tindamax, then realizes she's hungry (or her tummy hurts and the food helps). I noticed this post is 2 weeks old. Are you still having the same problems?

If you decided to continue the cholestyramine beyond 10 days, I would insist upon a cholesterol panel. You don't want a child to have a low cholesterol reading since cholesterol is vital to brain developement and function.

For my daughter it was the antibiotics that helped the most, specifically Augmentin. She's also on the inositol, but at a much higher dose of 3gm/day (was 6 gm/day). I'm not really sure it helped though.