Suzan

For me personally, I am thankful for alternative treatment. Traditional medicine is helping but is not curing us. The combination of both I think are going to be what gets us past this. I totally agree that it requires some suspension of disbelief until you experience it and see it's benefits. I will continue to post about our experience as we move forward in the event that our experience helps. Susan Edit - forgot to mention, Klinghardt's work with KPU for lyme patients has been a critical treatment for my dd9. Without going out on a limb about this, she would not be improving as she is. My LLMD could not find the research papers she was hoping for regarding his work on this but she agreed to give it a trial. She wants to write a paper about dd9's response to KPU treatment.

Amazing story and I am so happy for you all! Really fantastic!

I took dd10 to the new wellness doctor today. She got her zyto reading and kinesology and chiropractic evaluation. She scored highest that the doctor has ever seen on the allergy testing for any food (her highest was strawberries). She had 30 foods out of 170 that showed high reaction and that's not even with the allergy machine that tests for so much more. She has very low adrenal function, imbalanced neurotransmitters, does not digest protein, has yeast, heavy metals, and some imbalances in the heart and liver. Also highly sensitive to electronic frequencies and very high oxidative stress. Apparently this has to do with low gluthathione and antioxidants. I don't fully understand this but I had high oxidative stress too. He also saw parasites and virus and bacteria that need to be cleared in addition to the lyme that we already know about but he's not too keen on doing too much with the kids all at once. We didn't even have time to go over the whole report but he said she's in for the long haul since she's so messed up but he hopes to get our treatment down to months instead of years. I hope he's right. We will purchase a foot detox bath so we can do those treatments at home instead of in his office to offset some of the costs. We're going to do a minerals test on her hair and eventually probably a organic acid test but not right now. dd9 goes on Wednesday for her evaluation. She's my KPU girl and so I'm very interested in seeing what he finds in her. I resisted posting this update because I don't really know how to talk about all this. There are too many questions and so much information. I asked about the methylation pathway and why he felt it was not looked at more and he responded with big pharma, insurance companies, money. You treat all that stuff with fairly inexpensive natural treatments and that's not the way of big medicine right now. Anyway, that's his 2 minute opinion. Susan

I'm glad you have your answer! I am starting to think it's common in lyme patients, probably immune compromised patients like you said. We must be more likely to pick it up and not be able to fight it as quickly. I hope it does not last long for you guys!! Susan

Wow, Sounds great! I'm a geek (hand raised, see?!) I want to read it! Thanks for the recommendation. I will try to remember to ask the doc today if he knows why it's not a bigger deal yet in the medical community. I know we are on the cutting edge here with lyme and pandas and the methylation stuff throws us to the top of the pile, LOL. But still, I agree, I wonder what the reasoning is to not put it in the mix for those big name docs who are right in the thick of it. Susan

Which testing are you doing for the genetic defects? Let me know how those tests come out. I totally agree about lifelong supplements beating what you have been through so far! dd9 had a good day but really struggled this evening. After she got through it she thanked me for helping her. She knew she was stuck in some crazy thing in her brain. It breaks my heart. Susan

It's been a month since our last critical time with our KPU treatment. I pushed through last month and increased detox and things eventually calmed down. dd9 (she had a birthday) has been feeling much better and although she still looks wane and small, her emotions and outbursts and tummy aches had camled down and her handwriting was improving again. I decided I'd try one day of 4 CORE pills and see what happens. That was yesterday. By the evening she was crying that she hated her life and she just wanted to be normal. She was falling down and hurting herself and just overall unhappy. Today she is having fits of crying and dispare for no apparent reason and is overly whiney and miserable one minute and just fine the next. It amazes me how quickly she responds to an increase in CORE. I plan on sticking to 3 pills now until next weekend and then try 4 again. I have no idea when to stop treatment but my plan is to get to 4 pills and hold that for 4 months I think. I take her to see our new wellness doctor on Wednesday to review the methylation cycle, metals, etc. I'll post our complete update on him after we all have our first appointment and have a plan in place. susan

I am so glad you have reached out to the board for some support here! You know I worry about you every day. Susan

Thank you for the comments on bartonella and pandas. I think we need to reevaluate dd10 for bartonella!! So glad to hear your update! Susan

I have found that carbs, sugar, alcohol really make me feel bad. If I stay with it, I feel much, much better. Yesterday was my daughter's birthday party and I ate ice cream and gluten free cake. I feel horrible today and the pain started before I even went to bed. For me, I am learning it does not pay to indulge. I'm getting better at realizing that before I eat it. Susan

Hi, I thought I should mention, my girls both had positive vaginal strep A cultures. This lead us to our pandas diagnosis a year before learning about lyme. We did the Igenex test and had our chiropractor sign the order for the test. Our local lab drew the blood and we sent it in. My dd with the most lyme sympotms had a negative test but some postitive and IND bands. My other dd and I both had positive Igenex but negative CDC test results. After 3 or so months on lyme treatment, my negative dd was retested and her test became positive. So sometimes (often?) the negative results can't be relied upon. A good LLMD would be able to look at the clinical picture and help too. Susan

Chiming in late but my doc said to ignore the food warning and thank goodness! I get sick even when I have it with food but it's worse without. Susan

I've never heard FMLA to be used by employers to force an employee out of work. It is my understanding it's there to protect the employee's job if they are unable to work. It does not sound right to me if he has vacation he should be able to take it, unless they have a policy of having it planned in advance. Is his sick time different than his vacation time? http://www.dol.gov/whd/regs/compliance/posters/fmlaen.pdf

Oh I am so sorry you are going through this and that your daughter is having these symptoms! You are in the right place to get help and advice and I am glad you are questioning what your doctors are saying. I lived for 8 years with the strange symptoms with my daughters until I found the pandas and then lyme boards. After what I know now and what you have told me, I agree that you should pursue lyme and see a LLMD. My 10 yr old now has unwanted thoughts of people around her dying. She can't control it and it can keep her up at night. It gets better with detox so I know it's from the lyme. HUGS! Susan

Thanks guys. This is all really good conversations to help me try to wrap my mind around this. She made it through the day today at school. By the time she got home she was emotional and started falling apart. We got her right in the bath and did that routine. Then after the bath she had really bad leg pain and torso pain which she has not had in quite a while. She is playing with her sister now which is a great sign. One thing I've noticed is she has been really hungry and not feeling well if she does not get food fast enough. Susan

I've been doing charcoal, clay, chlorella, things like this but I am wondering whether she is properly detoxing too. I give her all kinds of supplements. I don't know which direction to take now and I really am just winging it because I have not had enough professional support! I hope this new doc can help with this type of stuff. I won't know until Fridaay how much he knows about lyme and pandas but hopefully his techniques can help no matter where the underlying issue lies. Susan

I have heard that CD57 is not always considered reliable for children by some LLMD's. However, with your son's results and his lack of response to the abx and IVIG, I think it should be checked out for sure. The only other condition that I've heard of that can cause a low test is HIV. Good luck! Susan

Interesting! Both my dd's react to MSG. One is being treated for KPU. My non KPU girl (dd10) has been getting 25 mg of B6 in her multi vitamin for months now. I don't seem to notice the MSG reaction as much in her as I do my KPU girl (dd8). I will pay attention as we continue treatment. Susan

DD10 has caught a virus of some kind that is going around (sore throat, head/tummy/back ache). It's the first time she's been sick since she started lyme treatment. It's unheard of for her to go over a year without being sick (other than lyme symptoms I mean) so that is good news. But I am very discouraged because she is crazy again. She is reacting to it like strep and had a severe episode last night that she can't even remember what happened when she was so out of control. Tonight she came to me to say she was scared because her brain was not right. She's spending much of her time in the bathroom with the lights off which seems OK because she can stay calm in there. So this brings up all the questions about whether lyme is causing all of this and it should continue to get better or if she has PITANDS/PANDAS in addition to lyme that need to be treated separately. I am feeling very confused and discouraged. Of course I was hoping that the lyme treatment would cancel out the pandas. I'm hoping the new doc I am interviewing on Friday has some thoughts about all this. I don't know what to expect from him but he deals with methylation and detox, nutritional imbalances, etc. Susan

We have a dog who we had pre-lyme diagnosis. She is an indoor dog mostly but of course goes outside to run around and use the bathroom. She is on flea and tick medicine and I just hope that is enough to help. My plan is to have the yard treated against ticks and hope for the best. We have a fenced in yard and I like the idea of treating the mice population (the primary animal to transmit to our yard I think) by soaking cotton with permethrin that the mice will take back to their nest. Sounds like it could work but I don't know for certain. Our LLMD urged us to not have a dog. But that said, she had a dog too! Susan

Hi there! Yes, I was the one who posted about dd10 and DMAE. I can't know for certain yet if it was from this or not. But I had started giving her DMAE and she became more emotional, concerned about the weather and clingy. At this point I started reading the undermethylation stuff and saw that about the DMAE. I was going to see if this cleared up when we stopped. So far it hasn't but it's only been a few days and I think I have too many things at play to know (tried a new detox over the weekend that kicked us on our butts). So more to follow on that.... Susan

Can you get the from Strep or Rheumatic fever? I thought that is what I remember hearing but not sure. What about Bartonella? I am sorry, I don't have any experience with it specifically. Susan

I gave dd10 the DMAE by accident yesterday morning (forgot to take it out of her weekly pills) so the test starts today. Last night she was lying on the floor unable to get up and writhing around and crying "help me, help me" but would not get up or accept any help (you know the drill), really bonkers for about 30 minutes. Her sister popped her out of it by a game of Simon Says, thank you dd8 Interesting about the quercitin. I know allergies are really bad now with the Fall changes. Maybe that is part of what is going on with dd10. I've been giving charcoal as soon as she gets home from school to give it away from the other supplements. Maybe today I'll try quercitin and see what happens. Did you find that there was any worsening of symptoms after weaning off the pepcid? dd10 has done well on pepcid in the past (pre-lyme diagnosis). Susan

I can't believe it but I found a doctor in my town who it sounds like he could be a good resource for us. I am going in 2 weeks for a quick consultation to see if we should work with him. Their web site says: "Our alternative approach to treatment to patient with neuro-degenerative disorders are designed to improve methylation and detoxification pathways. ...... philosophy is to remove toxins, irritatiing foods, and germs by replenishing good flora, nutrients and anti-glutamates. We perform major tests such as neurotransmitter, immune profiling,hormone and toxin screenings. " They also use Kinesiology, chiropractic and other physical techniques. I'm afraid this is going to cost me a fortune but if it seems we are on the right path, it's the place to be. I'll ask him about his experience with KPU, lyme, pandas and see what he has to say about methylation and how it could all relate to what we are going through. LLM, awesome diagram. More support for having some professional help from someone who knows about this stuff! Susan

Eye Update - I'm just getting old. Great.