Suzan

I am so happy about how well your son is doing!! I can totally relate to what you are saying about survivors guilt. I think the suggestions so far about helping others and spreading the word is great. That's what we need, spreading the word! Also, staying in touch with your local autism orginazations, volunteering, hleping the parents, that would help then and give you an opportunity to tell your story. I know you will find the perfect way! Susan

Yes, my dd9 and I both have had burning skin. I have only experienced it one time on my hands. My dd9 has had it many times on her hands, feet, head (brain) and torso. Sometimes you can see her skin get red while it's burning but mostly you can't see anything. We both have lyme and probably bartonella. Lyme positive by the Igenex lab testing. Currently I get the creepy crawly sensation inside my veins and also like spiderwebs are on my arms. Very creepy and distrubing but not as painful as the burning. HUGS and good luck! Susan

That is so great and I am so glad he is doing so much better!! Good job! Will you explain the testing you did more? I thought that C3a and C4a were not necessarily specific to lyme or mold but were indicators of (lyme for example) or other immune related conditions. Did you find of mold in your house? I have not tested my house at this point. I don't think we have any but you never know! Thanks! Susan

I was just reading this which I think is related: http://www.healingwell.com/community/default.aspx?f=32&m=1701897 I wanted to find out about MMP-9 and found myself reading the article about biotoxins which talks about lowering MMP-9 so I thought I'd post here too. Article about Dr. S. that has been posted before. What timing, we must all be on the same wave length! http://www.publichealthalert.org/pdf/2007_06.pdf Susan

The place I ordered from required the doc's name, phone and fax #'s. They will run the test and send to the doctor. But I did not need to give them anything else up front. This is where I got it from. I could not get the vitamin diagnostic info for some reason. I hope this works just as well. http://www.pyroluriatesting.com/?page=shop/browse&category_id=2&CLSN_1407=13088633411407ddefc07aba408a1239

I have ordered the test for me and my two girls. You can have children tested. Be sure to follow the instructions given my Dr. Klinghardt not what comes with the test. I will be sure to post our experience and results. We have stopped all vitamins and will test next week or the week after. Susan

I'm on doxycycline for overall bartonella coverage according to my llmd but I have small symptoms if that makes any difference. I don't know how old you have to be to take doxy. Susan

Maybe you could search around on sites like this to see if anything fits? http://www.immunedisease.com/ Also, have you read this about KPU? I think it's something to consider. http://www.publichealthalert.org/pdf/2010_05.pdf It's my belief that you need to treat the lyme no matter what and then treat what else you can in the mean time while searching for all the other answers. I am so sorry for all the things you are going through but I am glad you are making small improvements. It seems your body is trying to get well and stirring up a lot. Susan

My dd9 is begging for IVIG. She remembers how good she felt for a few weeks after getting it. She feels like another IVIG will kick out her remaining symptoms. Who knows?! I do plan on asking her neurologist when we go next month what he thinks about it. I know some others have continued with IVIG so I imagine they will give you better information than that. My old LLMD did say she felt IVIG had a place in dd9's treatment after her lyme treatment. Susan

My 8 yr dd who does not swallow pills does not mind the bentonite clay. I put 1 tsp in a little cup with about 2 tsp of orange juice. The OJ masks it enough. She doesn't complain about it (and she complains a lot about everything else!). I don't know if this is near enough clay though. She is 55 lbs. I will be starting a new detox program for her soon. I'll post it once i know what it is. dd9 is 88 lbs and she takes Chlorella, 1 cap am, 1 pm. That seems to be doing a good job although I still worry it won't be enough. Susan Edit - I also wanted to bring up Diatomaceous earth (DE). Said to be a great detoxer. We use it, but not consistantly. I'm going to try to bring it back in. It works great in smoothies but if your child is not a smoothie drinker (like my 8 yr old) it can be difficult to get in.

My daughters and I all had increased pain with our treatment. Our LLMD recommends a heating pad with herx pain. We used this a lot and it helped. Also, epsom salt bath soaks (a warm or hot bath with 2 cups or so salts poured in). We also take ibuprofen and benadryl to help with herxing. Susan

This will work better... I'll update my post above too. http://www.betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

I also had another post about KPU and posted this article which is good. You can't search on a three letter word so I'm thinking maybe we should put this KPU stuff in one of the sticky posts. Fixed link. http://www.betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

Oh Wendy! Please keep me updated as dd8 is about to be treated for this as well. I was just looking up more information to try to see if I should be tested or treated too (or dd9 as well). Our LLMD is not testing dd8 since she has an overwhelming number of symptoms and will just start a trial treatment plan. I have some symptoms but not like dd8. Did you have a lot of the symptoms that are talked about? Or how did you decide to do the test? You tested via ART... this is different than the urine test that is talked about right? Susan PS... very afraid of the herx/metal dumping for dd8.

My 8 yr old does this too, not all day long, but it is one of her triggers. She will cry about not wanting to grow up, get old, etc. I always know when she does not feel good because of this or her food OCD. Hang in there. Susan

I was just the same way. My brain came back first. It was so great! I still get brain fog with herxing but it's so much better. My heals and bottoms of my feet stopped hurting pretty quickly too. I didn't test for bartonella but LLMD thought I probably have it. Susan

That is really great news! It is a great sign that you are on the right track and things will continue to get better! Susan

Glad you like your doc! I have ankle pain right now and it's making me mad. Luckily I don't have it all the time but it does come and go. I hope your daughter's pain gets better and better with treatment. Susan

Thanks ShaesMom! I only know about it becuase of others on this board. I am so grateful for everyone here and the information they share and grateful for my new LLMD who is open minded and willing to try this. For anyone who has not seen this article yet about KPU/HPU and lyme, here's a good link. The video of Dr. Klinghardt on this subject, although long, is really great too. http://www.betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf Susan

Took dd8 to my LLMD today to get her established as a patient and talk to her about KPU. She agrees that dd8 shows classic symptoms of KPU. She has agreed to treat her based on clinical observations, prior test results (not KPU testing but other mineral/vitamin/OAT, etc) and my observations over the years and her lack of response to the lyme treatment. We are not testing for KPU but are going to start the treatment in a week or so after she does her research and comes up with the best treatment plan. I am nervous because of what I have read of the heavy metal dumping that will come with it if she does have KPU. She may get very sick for a while. But I really feel strongly that this is what her issue has been all along. It fits even more than PANDAS and Lyme does and if we can resolve this then the pandas/lyme can resolve. For those who have gone through or are going through KPU treatment. I would love your feedback and/or hand holding. I'll post the treatment plan when I get it. Susan

Oh yes, I see now, at that time (2008) she showed positive for gamma strep, cigtrobacter freundii and klebsiella pneumonia all resistant to amox. She was treated at the time with something, but I can't remember what. I would say it's probably true it's not working for us. Thanks everyone, I understand better now! Susan

This was it... Comprehensive Stool Analysis http://www.greatplainslaboratory.com/home/eng/stool.asp I did this for dd8 and dd9. Show's candida, parasites, etc. In retrospect, pretty cool test. We did this before we knew about pandas and were trying to figure out what was going on.

We did the OAT too and I think there was an add on stool test but I can't find what it was called. I don't see where it checks for clostridia. susan

It amazes me that in the presence of a positive mainstream test and clincial presentation, doctors are still unwilling to believe it could be lyme. I totally agree with everyone to follow the LLMD's advice. I refuse to see an ID doctor whenever they are recommended to me by my regular doctors for this very reason. Susan

Has anyone done the great plains test stool test where it gives results on bacterial sucseptability? I was just looking over dd8's testing to get ready for her LLMD appt next week. She shows resistant to amoxicilin and ampicilin on this test. She's been on amoxicilin for her lyme for months with no real improvment. I am assuming this test result means that the amox doesn't work for her. Is anyone familiar with this test? It also shows she's resistant to caprylic acid which she's been on for antifungual support. She's been crying again because she doesn't want to grow old and wrinkled and die. That's never a good sign. and she's not eating well again. Our LLMD appt can't come fast enough for me. Thanks, Susan