Suzan

Do you know if there are any requirements for these tests? (no benadryl or allergy meds or specific supplements for a period of time before the test?) I am curious with the low histamine signs for your KPU child. dd8 is being treated for KPU and she is only allergic to dust. She has many food intolerances but she shows more symptoms of high histamine although she is more a mixture of both than my other dd.

http://www.nutritional-healing.com.au/content/articles-content.php?heading=Major%20Mental%20Illness%20Biochemical%20Subtypes This link has a chart that helps breakdown some of the info. I'm confused about a lot of things but right now how KPU fits into all this. My girls seem to have more under methylation symptoms but they do have average and over symptoms too. Susan

LLM, I seriously want to understand this more. I will read up on the rest that is new over there tonight. I'm not sure my lyme brain can wrap my hands around it all. But the benadryl, the allergies, the deficiencies, the food intolerances, it's peaked my interest for sure. Very interesting to me on this article about pyrrole and Omega 3. dd8 gets worse with any fish oil. I'll have to read this article a few times but this is one of the easy ones to read! http://www.alternativementalhealth.com/articles/walshMP.htm

Dut, What I've seen, milk is OK but most other dairy is not. Have you seen other info on milk? Thanks! Edit - I think I see that it is a histamine promotor not high in histamine itself? Is that right? Susan

Has anyone on plaquenil had trouble with their eyes? My lyme doc has been pushing me to get my eyes checked. I finally called the eye doc today and found out it will be covered under my medical coverage (I don't have coverage for routine exam which is why it took me so long to call). I told the lady on the phone I was taking plaquenil and I have very blurry vision. Shs said "Oh! You're taking Plaquenil? We need to get you into the next available appointment". So I go on Thursday. •blurred vision, light sensitivity, seeing halos around lights I don't see halos but I have the other. I've had light sensitivity forever though. I told my lyme doc I just wanted to stop taking the plaquenil. I have already reduced it from 2 to 1 pills. She does not want me to stop taking it unless I have to. Susan

Have you looked up pictures of molluscum? My dd's had this too. Susan

I was hoping someone would have experience with this since I just opened up the capsule the other day and tried to mix it with juice. It was a disaster. It would not mix at all and was just what you'd expect. Powdery charcoal getting all over everything! Did you try it or find out anything elsewhere? Susan

Hi, my dd8 took these for a while 3 years ago. She was 6 at the time. She got a shot a few times a week. Although she didn't like getting pricked, she came to love her B12 days. It really helped her feel good. Other than that, I don't have much info for you. I hope they help!

LLM, Good info, same trouble I'm having with all the products I am finding that I can get into dd8. Do you know of any other placed I can look to find a good product that she might be able to take? I'll PM you.... Susam

Has anyone read up on or have any experience with this protocol? (google brings up a couple of options.... designed for HIV treatment and being used for cancer treatment and other microbes) Also, is anyone using MSM (suflur) for detox? Thanks! Susan

My dd is going through this now, pimples on her arms, legs torso. They seem to last a long time. We just continue with detox and treatment and hope they will stop coming! Epsom Salt baths seem to help dry them out faster. Susan

Oh weird!! It scared me too. I dont' know what it means. I hot footed it to he kitchen to find something to maybe help her! It must be a sensation that they don't know how to describe. Just yesterday I was telling someone that my elbow felt queazy like sick to my stomach but in my elbow. They thought I was crazy.

Regarding the Tums, I give it at least 1 hour before abx or in the evening when she currently is not taking any. I hope the 1 hr before is enough, what do you think? I gave her ibuprofen this morning too. I think I will give it to her for a while. s

dd8 has been on 3 CORE pills now for a couple of weeks. Overall I think it's going well. She has not been getting anymore pimples around her body... well, she does have one on her arm trying to come out so maybe it's just slowed. Her hand writing gains seem to have slipped and she's not doing as well with her orgainzation or math skills. She's been having nightly tummy aches and her food OCD is getting worse again. Of course I worry about the detox from our last conversations about it. Last night, after her epsom salt bath, she was crying and obviously distressed. Her tummy hurt, body ached and she said it felt like her legs weren't even there. I gave her some ibuprofen and benadryl and Tums. This seemed to calm everything down. This weekend I'm goning to get more clay (we ran out). I wish I had more professional detox help. I continue to believe that we are on the right path and this is helping. It's the most movement in her symptoms we've had in a year. Trying to be patient. Susan

Big Hugs Emerson! I sent you a PM.

We get the white zith too. We used to get the red and then it changed to white so I don't know if it makes a difference which pharmacy you go to. I would ask them if you can get it. My dd10 reacts to the red dye in it. I don't have any doctor recommendations for you but I am so sorry you are going through this. The "it's not lyme", "it's not pandas" thing is maddening! It does sound like your doc may not be up on the necessary treatment for lyme that is for sure. You can contact ILADS to request a LLMD listing in your area. If that is how you got your current doc's name, then I'm not sure what to say about that! Good luck. I really like the herbs and trust that they work but I have only used them in combo with abx at this point. Looking forward to hearing your results. Susan

Hi Wilma. I've been on doxy since around June. I had an immediate improvement on it but then felt awful too. I hated just about everything about it except it did help my brain think more clearly. But I did get used to it and now it's not causing much trouble. Using the heating pad, warm baths or my sauna usually help with herxing, but I found that the doxy made me sensitive to the heat so I could not use them for a while. I hope you figure out what can help you. Did you ask your LLMD? Susan

I deleted my cookies and I was able to take it again. Thanks!

Yowza!!! We pay $425 for the first visit and $165 for follow up. Susan

It would not let me take the survey more than once from my computer. I can try from my computer at home to take for my kids. I made the suggestion in comments to offer the option to answer for young children but I'll try to actually submit them. Susan

Thanks LLM, that is good info and I hear you on your lower paragraph about your experience and sharing informaiton so no worries there. I wouldn't mind giving an approach like this, we have DMSA that I am using every other week with dd10 but dd8 has a seizure disorder and what I read was very strong about not giving to people with seizures. I didn' took into DMPS because of the other little I read on it seemed like if she couldn' take DMSA then she probably couldn't take DMPS but I will look into that. I'll read what this guy wrote too and hopefully I won't get to freaked out. What we are doing does seem to be working, but you know, I want to be sure I'm doing the right thing. Susan

So questions, does KPU by nature imply a mercury problem? Is mercury the only thing that will take the place of zinc? Or any metals? If you take NAC and don't react poorly, would this imply that there is not a mercury problem? If mercury is a problem would you not want to take NAC because it moves it around but doesn't bind it? What if something else is binding it? I'm trying to catch up but I'm horribly behind! I could come up with more questions but these are the ones that came to mind. dd8 is pushing through her KPU treatment. She is managing pretty well now on 3 CORE pills after a week. I am concerned I'm not detoxing her well enough but trying everything I can. Hoping I'm not screwing her up by not doing it right. She is taking NAC to help produce more glutathione. I haven't noticed anything negative at this point. Susan

Great job LLM coming up with these great questions! I am giving Chollera with the other pills. Oh no! I need detox soltuions for both girls for different reasons but you have helped me with some info here for dd10. I think I need to switch things up a little. Susan

In addition to the magnesium and melatonin, I also take 5-htp. This helps calm me down and I'm sure helps with my overall ability to sleep. This week, I'm having a heck of a time going to sleep. I take benadryl every night for bad allergies and this helps me too but this week, I don't know what is going on! Susan

We are treating even in the absence of a positive test since these tests are not always reliable. This is not the lab I used (I had trouble finding this one for some reason) so I wonder if the lab I used was as good. I think this is the one that is recommended to use. http://www.integrativepsychiatry.net/cart/view_products.php?SubCat=120 You do need a doctor to sign the order to process the test. Good luck! Susan