Suzan

dd10 did something similar on augmentin. She got listless and non-responsive and slept a lot. The doc took her off and put her on something else and she perked up. It was very scary.

Well, good to know and at least for now. Hopefully you won't have to use it forever and move on to something else. I found that pushing through was a good thing for dd9 and it didn't last too long. Susan

In talking with out new doc, he feels dd9 is getting too many minerals from CORE. He is considering dropping her down to 2 CORE and supplementing with zinc. She showed still low in zinc even after all this CORE supplementation but her other minerals show high. I showed low in zinc and copper so I'm taking both now too. Anyway, I don't know of any other product that has the same stuff in it. I totally hear you on the cost. It's expensive! Susan

Oh I am so sorry too. I am completely upset about insurance companies and the whole dang thing. I hope you can find a way to get this paid for or find another treatment that will help. My expectation next year is that insurance won't be covering anything that is actually useful and key to our healing. That is just wrong. Susan

At first I thought lyme only fit dd10 and I was slow to come to that thought. She had lots of pain for starters that didn't fit into the pandas diagnosis and would go for periods of time where she could not walk. While I was getting her tested and learning more about lyme, I started to realize my symptoms fit lyme too. Hashimoto's thyroiditis Weight gain Fatigue Joint pain ...to name a few. Then I woke up one day with a paralyzed arm and horrible pain and I was diagnosed with Parsonage Turner Syndrome. I later found out that can be a sign of lyme like Bells Palsy. I started getting muscle twitches and memory loss after that and started getting lost all the time. So I tested me and dd9 too and we all came up with lyme. It became apparent to me that I had had it for years and passed it along to the kids. I wish I would have known before I completely fell apart but such is life I guess right? Susan

Interesting because my dd9 who is supposedly toxic with heavy metals had no high metals in her hair sample. We'll keep a watch on that!

Ugh, I wrote a response and lost it. I didn't have anything of great value to offer, but wanted to mention that my old LLMD said that the headaches can give her good information on what may be going on so she always asked detailed questions about where and how the head hurt. She said it could give a clue into whether it's lyme or coinfections, etc. Maybe your LLMD will be interested in that way. My head has been hurting lately due to detox I think. I'm glad to hear his anxiety is doing much better. I hope the headaches go away soon! Susan

http://www.forresthealth.com/kpu-test.html I think this is the right one. It's not the one I used, but I hear that Vitamin Diagnositic is the best. Our test was negative but we are treating dd9 based on clinical diagnosis and having success with the treatemnt. Hair analysis that we just did showed low zinc, even after all this zinc supplementation so that helped confirm that she needed it. Susan

That is amazing! That is so great that he can recognize it and that he feels so much better!

Good job! Glad you found it! Susan

I recommend the batha if you can fit them into your schedule. 1 cup apple cidar vinegar, 2o min bath 2x a week and 1 cup epsom salt and 1 cup baking soda, 20 mih bath 2x a week. I saw some good progress when we started this. The only other thing about the eys pain, dd9 has high oxalates and our doc was recenlty talking to me about this. It can cause chrystals in the eyes and cause a lot of pain. To combat it one of the things you can do is eat low oxalate foods and avoid the high. To find out if this is an issue you have to get the organic acids test done which is pricey. So I don't know if it could be related or not but just thought I'd throw that out there. We have not had eye pain as a herx but I'm certain it can be a herx too. Susan

This is the one my chiropractor uses in the office and it's on sale now.... http://www.bodybalancesystemonline.com/detox-therapy/products.html It's the first one listed for $509. Our chiropractor says you can do it as often as every other day. We've only had it for a week but we are shooting for 2x a week since we have other baths that we are also taking. I'm glad to hear that your dd has benefited from it! Susan

Keep the faith. It will happen. DD10 went to sleep on her own in her own bed! Happy Dance.

Thanks guys! Smarty, thanks for the suggestions. I will check those out more. We have the book you mention about your brain being stuck and dd loved it while we were using it but we have not looked at it in a while. LLM, I still want to understand all of what he is doing and I have not impressed upon him enough I guess on how I want to understand what he is working on but in the end I just want to see the girls get better. I know as I ask questions each time I will learn more. My hope is to eventually buy a rife machine and take over as much of this stuff as I can for us to help manage the costs. I'm glad I bought the foot detox spa. Susan

Cautiously giving a positive update about our new detox wellness protocol. We had our first appt last week where we got some laser treatments, allergy treatments and chiropractic adjustments. Since then we have continued the baths (baking soda/epsom salt bath and apple cidar vinegar baths), foot detox bath, magnets for EMF protection and the new supplements in addition to the lyme abx. Today dd10 said she must be healing because she started two nights ago thinking about having a normal bedtime. She wants to have a normal bedtime but she's afraid that she won't be able to go to sleep. She has so many bedtime fears and rituals and so for the past couple of years the girls go to sleep on the couch while we all watch some calming TV and I take them up to bed after they have fallen asleep. So we talked about some transition ideas and tonight the girls went to their room to see if they can fall asleep with a normal bedtime. They read in bed and if they were awake at 8:00 and worried they can come down then and we will have our regular bedtime. dd9 fell asleep but dd10 (she's the only one with the major bedtime issues) fell asleep but woke back up and came down at 8:00. So she's alseep on the couch right now but she is happy about her first step and we are going to try again tomorrow. Other changes, when dd10 has her OCD tantrums, she usually is not aware that it is not normal or that she is doing anything that she should stop. Now she knows it's not normal, she can say it's wrecking everyone's time, that she wants to stop but can't stop. Also, the girls seem to have more loving sisterly moments. dd9 has been sleeping better too so she has not been coming into my bed every night. Long way to go still but this is helping me to feel like we are on the right path and adding in this stuff may really help. One of the things that is being treated is low neurotransmitters. I wonder if the neurotransmitter imbalance has been causing a lot of dd10's symptoms. With everything lyme does to your body, I'm starting to think supporting the whole system may be an important factor in healing. Susan

Hi! We've done 2 more baths since the first one with the bad reaction. We used about 1/2 cup each time and it was much better. We still all felt sick after the 1st one but the one tonight we did much better. I'm glad to hear you have had such good results and thanks for the book recommendation. I'll check that out. The bath plan is 2 vinegar baths and 2 epsom salt and baking soda baths a week. We have only touched the surface of the detox plan we are going to start, this was just the beginning so we still have a lot of work to do but it's good to know we can tolorate the baths and I think it is helping us detox. Thanksgiving set us back a little because we got so far off our diet so we are backtracking now. Susan

My dd10 had high CamK (146) and direct strep connection with chronic vaginal strep with pandas symptoms although she also had unexplained pain. She did 3 IVIG's considered low dose (highest was 1km/g). She had improvement in her brain and mood functions that lasted about 3 weeks. She would have increased pain in her limbs for a few days. First IVIG she could not walk well out of the hospital. She responded well to 500 mg zithromax daily but would backslide if the dose was decreased or stopped. Dr. T said she was abx dependent. She responded most to the three abx approach to treating lyme. She has no more pain and we are dealing with the last of her symptoms which seem to be PITANDS related. What else do you have to share on deep brain stim? Thanks. Susan

For some reason, OCD has been one of the hardest things for me to understand. Both my girls have OCD of some sort. My dd10 gets stuck in her mood it seems and I think it may be compulsions. She can't get out of it once it's triggered. Her OCD can be triggered by a number of things and I think it's "just right" ocd where she then tries to make things feel right again and can't. We aren't dealing with it on the level that you are however. It's morning and night episodes and not all day long. When I can't get her out and things are bad, I give her lorzepam. That calms her brain enough but it makes her very tired so I only use it for night episode and only when it's really bad.

Before I knew about lyme, we went on gluten free diet for gut issues that we were experiencing. It helped a lot. When we learned about lyme, we went on abx right away. I didn't really learn about all the other stuff until after we started down the abx lyme path. My dd9 has not improved much on abx and we are now going heavily down the detox and inflammation path to get her body into better shape and hopefully treat the lyme better. Susan

Both our neurologist and wellness doc feel this was a massive detox reaction. Recommendation is to try it again in a couple of days using only 1/4 cup of vinegar and see how that goes. I'll keep you posted. We see our wellness doc on Monday next week for our first working appt. Our neuroligist is very happy we are working with him and agrees to work together. I love that! Susan

Igenex seems to be the way to go. There may be other testing that others can recommend. My insurance paid for 80% of the first one we did. My insurance next year probably won't so it really depends on your plan. Good luck! Susan

Thanks! I found it and it's a very interesting read. I'll go now to read more on high histamine and the sulfation pathway to see if I learn anything more. Today dd10 says her eczems feels fine but it still looks red but much better than last night. I forgot that she also had a crying spell while in the tub. She could not control herself for a while but got control before she got out of the tub. They both seem OK today. http://www.latitudes.org/forums/index.php?showtopic=3208

One of the things our new wellness doctor prescribed for us to do at home is an apple cider vinegar bath for 20 minutes twice a week. 1 cup to a quart maybe? in a warm bath. Says it's good for heavy metal detox for one and alkalizing. We tried it tonight. The girls had trouble with the smell but it was sort of Ok. Before too long, dd9 was falling apart. She was crying and sobbing and saying that she felt horrible and how much she hated vinegar and how she had to get out of the tub and could not be calmed down. I rinsed her off and got her out and she continued to wail and say she didn't feel well for a while. I got her calmed down and she went to sleep. She is highly toxic and not detoxing well. Does this sound like a detox reaction that she experienced? dd10 has dry skin and eczema. When she got out her skin was bright red and very itchy and uncomfortable and very scary for dd10. I put aloe all over and put her to bed. I read on the internet where apple cider baths are recommended for eczema but it didn't look good at all. Plus it stung in the water. We probably put 2 cups of vinegar in a large bath tub. Overall the bath was completely emotional and dramatic and hard to tell if we should continue. I'll call him on Monday to get his thoughts but thought I'd post here to see if anyone has any experiences with apple cider vinegar baths. Susan

I had to look up the band definitions. You have some IND very specific for lyme. With your children's positive test results, my guess is that you are not producing enough antibodies right now to push it positive. Will you be going to see the lyme doc for yourself? Band Definition 30 kDa OspA (outer surface protein) substrate binding protein 31 kDa OspA 39 kDa BmpA. Specific for Bb 41 kDa 58 kDa 83 kDa p83 high molecular mass protein. Specific for Bb 93 kDa an immunodominant protoplasmic cylinder antigen, associated with the flagellum. Specific for Bb

dd9 had her appt today. It was interesting to see that she did not show up with viruses and parasites like dd10 and I. But she was highly toxic and full of inflammation. She had very high oxidative stress, does not digest protein and also high oxlates which she has tested high on the organic acid test with that in the past. Oh and he thinks she has leaky gut. He feels that her seizures are being caused by the overload of toxins and stress on her body. She showed up with only 6 allergic reactions to foods but they were highly reactive, much higher response than he usually sees for anyone so he feels there are hidden allergies there. The plan is to start working on the toxins and candida, allergies and leaky gut and take it from there. He was not familiar with KPU so he needs to read up on that and I will continue our treatment with CORE as planned for now. His detox plan should help with that. Won't address the actual lyme until we get her a little more balanced but she will continue her antibiotic treatment. At home, epsom salt baths, apple cider vinegar baths, foot detox baths, specific supplements, drinking water, light exercise, dietary changes (no tea except green tea, no sodas or artificial sweetners). In the office once a week, allergy treatments, cold laser, chiropractic...