Suzan

I am sorry about your lyme diagnosis but I am so glad you have found out so you can be treated. This is good news! I hope you start to see results soon. Susan

Ooooooh wonderful! Maybe some of this will rub off on North Carolina.

This info may be in the linds LLM just provided but I found this that I had found helpful when I got my tests back... MEANING OF IGENEX TEST: The following is a breakdown of the Western blot only. As co-infections will show their own titers. IgM is a sign of a current infection. IgG can be a sign of a current infection if symptomatic, or of a past exposure to or past infection by the organism. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~` PLEASE BE AWARE MANY LLMD'S CONSIDER A BAND THAT IS 'IND' AS POSITIVE, IGENEX TEST READS 'IND's' ARE SIGNIFICANT AND DOES NOT INDICATE A NEGATIVE. IGeneX also now offers a new 30-31kDa Confirmation IgG and IgM test. If results from the initial Western Blot are positive for bands 30 or 31, it is possible that these could be due to cross-reactivity with several different types of viruses. In this confirmatory test, highly specific recombinant antigens are used to validate that the positive result is not due to cross-reaction with viruses. There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93. Only one of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease. (More info pages 12 & 13 "Western Blot Made Easy": http://www.publichealthalert.org/PHA%20JUNE%2007.pdf ) Igenex Western Blot Break Down by band 9 cross-reactive for Borrellia 12 specific for Bb 18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above) 20 cross-reactive for Borrellia 21 unknown 22 specific for Bb, probably really the 23/25 band 23-25 outer surface protein C (OspC), specific for Bb 28 unknown 30 unknown; probably an outer surface protein; common in European and one California strain - Has cross-reactivity with several different types of viruses 31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses 34 outer surface protein B (Osp; specific for Bb 35 specific for Bb 37 specific for Bb 38 cross-reactive for Bb 39 is a major protein of Bb flagellin; specific for Bb 41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info) 45 cross-reactive for all Borellia 50 cross-reactive for all Borrellia 55 cross-reactive for all Borrellia 57 cross-reactive for all Borrellia 58 unknown but may be a heat-shock Bb protein 60 cross reactive for all Borrellia 66 cross-reactive for all Borrelia, common in all bacteria 83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane 93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b] An IgM positive test result means more recent & likely currently active infection. IgG positive means previous exposure to the bacteria or older infection of Lyme. If no symptoms are present with IgG positive, it may mean an "inactive" LD infection. No matter the results, please remember LD is a clinical diagnosis, you can have a negative test and still have Lyme Disease and the co-infections, even through the best labs.

Wendy, please remind me, the negative reaction, do you feel it is herxing and you are working through it? I plan on calling a bat removal company and I assume they can do something about the guano that is safe. I read that you need to ask the company how they will be removing it and no never let them carry it through your house. Luckily this can be reached from the outside of the house. I don't think it's enough or in a place that is currently making us sick but I guess you never know! The bug guy says if it sits long enough it molds. Susan

Saw the neurologist who is overseeing some of our lyme treatment today for dd8 and dd9. He is keeping the protocol the same (amox, zith, flagyl, diflucan, nystatin) and wants us to turn around their eating habits. dd9 is 85% (??) better but has some remaining OCD and anxiety and emotional liability that comes at night and other times during the day. She is so much more functional but these issues are still concerning. He said if the nutritional changes don't do the trick, he will consider another IVIG. His recommendations: low glycemic diet, no dyes, no artificial sweeteners, avoid dairy (we are already gluten free). LLMD today agreed to try dd8 on a slow but sure KPU treatment protocol. She tested in a higher range of normal range for KPU but who knows how reliable the test is and she is not improving so far on her lyme treatment. 1 Core a day for 2 weeks and then 2 a day for 2 weeks at that time we will review blood work to check for any possible imbalances. I'm to keep a chart of her symptoms, reactions. Neurologist was putting his money on the nutritional changes for her too but since she has food OCD and other food issues, this will be hard for me especially since I am overwhelmed being the food provider for our home. So I am glad to have the KPU to try and work on the food at the same time. I do know that I feel much better when on a low carb or low glycemic diet so I need to clean up my eating act too which has backslided very much the past month. We have a bat living outside our house under the attic vent. It was not bothering me but it is pooping a lot and it's building up between the house and the screen. The bug guy says bat guano becomes toxic like mold and I need to get that out of there. Anyone have any bat guano experience? We do go in that attic maybe weekly. Susan

I had a blood test show wheat allergy years ago but I didn't think I was really allergic becuase there was no direct connection to my symptoms. In addition to the itchy armpits, I would get a strange, very itchy rash that would start at my knees and travel all over before it finally resolved and I had to use powerful steroid cream. That has completely gone away too with the removal of wheat. Maybe it was part of lyme and removing the wheat reduced my inflammation and histimine. I don't know. Regarding the flagyl, I don't think I am going to increase more than once a week. At least LLMD didn't say to try. Glad you are feelign OK today!! S

Interesting on the itchy armpits because this is a horrible symptom of mine from the past. I cut out wheat and it went away completely. Now I am like a wheat meter because if I get any at all, my pits itch I was like you with the flagyl too. Now I can take it once a week with no herx. Nice! Good luck. It is getting better! Susan

I need to watch it again. The DVD I was using was having an issue so I kept getting interrupted. Plus, at the time, I kept thinking, "this is not us" because we were not as bad off as some of those in the movie. That was before things really got bad with me. Still, even with all that going on, it was a great documentary and very moving and scary. Susan

Anyone else get the feeling of being covered in spiderwebs with their herxing? It's driving me mad. I get them on my arms and face. I'm constantly trying to wipe away those webs! I thought the buzzing cell phone vibration in my shoulder blade and scalp was bad enough. Luckily that is gone (usually) but I prefer that to these spiderwebs. I hope my kids never get this. I don't think they would be able to handle it. I wonder what makes one person get one type of herx and someone else another. It seems that the three of us are all so different. Susan

Good for you! You are not stupid and you are just taking steps to ensure your daughter does not get a horrible infection that is hard to get rid of! I wish there was a way for you to get one more month of treatment. Keep a journal if you can of what happens these two weeks in the event that it will be good information for a lyme doc if you get to one. How nice of the non-lyme specialist to guarantee you that she doesn't have it I went to a new local doc who was an integrative medicine doctor. I was completely shocked when she told me she would be working to prove I did not have lyme, even in the presence of a positive test and improvement on the treatment. It was not CDC positive so she refused to believe it was true. She said I may be improving but only because whatever was wrong was also treated by the lyme protocol Susan

Ann Corson's Article on Pediatric Lyme. http://www.publichealthalert.org/pdf/2009_10.pdf

http://www.publichealthalert.org/pdf/2009_10.pdf For young children with lyme symptoms, I think this article is also very important to read regarding pediatric/congenital lyme. It's true, we have all had such a hard road that we just want to help urge you to determine if it's an issue for your children. HUGS to you! Susan

The rash on her cheek came out during the time she was on antibiotics for the pneumonia? I am wondering if this could be a herx reaction. I agree with mama2alex, with the pandas diagnosis for your son and this rash for your daughter, you should all be evaluated for lyme. Do you show any signs that you could have lyme? Susan

And look how hard it is for some of us to treat strep! Makes sense what your LLMD said! Let's keep attacking and get these bugs! Susan

This is not bells palsy but I consider it in the same neuritis family so I thought I would mention it. I had brachial neuritis (parsonage turner syndrome) where my arm was paralyzed for two months and then greatly weakened for months. I woke up in horrific pain and then my arm paralyzed last July. It slowly gained mobility and strength. After lyme treatment, it improved a lot and especially after treatment with doxycycline. It is about 90% back now (still weakens quickly upon non-supported use). Susan

dd8 still talks about top ramen and she's been gluten free for 3 years! Her goal is to be able to eat gluten again and her first test is going to be with a cinnamon roll. She can't remember ever eating one. When she walks by one of those places in the mall that sell them, she says "Ahhhhhh, that gluten smells good!" I hope she gets her wish some day and I hope your ds does too! Susan

Hi Andrea, I remember you from last year! I have two girls and my 9 yr old is not 100% but before two weeks ago I would have said she was at 95%. We are having a little back sliding right now I think due to having to stop her vitamins and eating too much dairy. Maybe it's a 4 week herx too, not sure. She was diagnosed with pandas prior to her lyme diagnosis. Over her 9 years she had sensory issues (sound, touch, smell, light), unusual fears, separation anxiety, worries, poor sleeper, just right OCD, gluten sensitivity, allergies, pain which would sometimes prevent her from walking), muscle twitching, burning pain. Her just right OCD would cause huge problems for us and we were in a pretty bad place last year. She started lyme treatment in December 2010. Her reasonable mind came back within a month. It goes away with herxing and when she gets triggered by something but it's generally not nearly as bad as it used to be pre-lyme treatment. She rarely complains of pain or twitching and never has any burning pain. All of her symptoms are less and manageable. She has fewer meltdowns in school and everyone comments on how much better she is doing. She is having a very fun summer at camp with very few complaints. I see that we need help with her ocd and anxiety/fears. This is what seems to pop up the most now. Maybe it's just a little more healing that needs to be done. We are looking into KPU/HPU as a possibility but I suspect that more for my 8 yr old. She is taking allergy shots but no real improvement to allergies yet (she's allergic to just about all alergens like trees, grass, dust, cats....). I hope that helps. Susan

I know I won't stay on antibiotic treatment for years but I imagine I will be on natural treatment for a long time. That is a small price to pay for the way I feel now. I am much better than I was last October when I started treatment. Lowering my bacterial load with abx has has made it so I can keep my job and take care of my children and I don't feel like I'm going to die. It really is much better for us. My 9 yr old's state of mind and pain levels are so much better than they were a year ago. We do still have work to do before I would consider us on maintenance and I think I will always be working on symptoms from something (lyme, viruses, candida, puberty, aging...). I'll always search for answers to help our lives be better and to make sure that we don't ever get on the bad side of lyme again! I've had lyme for probably over 30 years and my girls have had it their whole lives. It does get overwhelming and it does get old and I do get impatient but ultimately I mostly feel grateful that I have found out about it and we are getting better. susan

It is scary and overwhelming but ultimately it will be better in the long run to start now. I hope you have caught it soon enough so that puberty will not be a trigger or that it makes this time for him worse. HUGS!! susan

I think there are ticks everwhere. But there are not as many in the desert areas of places like NM and AZ especially if you stay away from any forest areas. Do you have a dog? Our LLMD suggested that we get rid of the dog to avoid future tick exposure. I'm hoping that treating her (the dog not the LLMD ) and our yard will be enough for our back yard exposure. Have you read about how to protect yourself by wearing light colored clothes and tucking your pants into your socks? You can also spray your clothes with Permethrin. I have not started doing this yet but it's my plan. Susan

I am just going to the fedx or ups place today to mail our samples. Good info here about vitamin diagnostics. I could not find a way to get their test so I ended up going to DirectHealthCare Labs. I hope the test is OK coming from them too. They were $55 and do not pay shipping. I did add vitamins back as soon as finishing the collection so maybe I should back off for another day just in case! Ours came in a styrofoam box that was inside a cardboard box so hopefully that works. I have three tests in two of these little boxes. I am interested in your sons reaction to not being on vitamins. dd9 and I both had a hard time being off vitamins. I noticed a difference in dd9 after about 3 days and she's been a mess ever since (increased OCD, fears, anxiety and anger). dd8, who I suspect more of KPU, seemed to do better off her vitamins. She's the same one who reacts to omega 3 oils too. I'm trying to figure out if one reaction might be more indicative of KPU than the other or if it's just an individual thing. It will be interesting to get the test results back. I think ours will take 2 weeks. Susan

I think herbs alone can work. I hear that some people can get the same if not better results. I always knew I'd give abx a try for a year and see where we were then. I hope to transition to herbal treatment and other natural treatment around the year mark unless I think we can still get more benefit from abx. Susan

Wow, that's good. I was diagnosed as a kid with "loose kneecaps". I was in a lot of pain for a couple of years and had to wear tight bands on my knees if I had to do any walking. I wonder if I had a doc who knew about lyme way back then if I would have been diagnosed. Pretty sure I had it at the time. But the doc said I'd grow out of it and I did so who knows! Although my knees do hurt again, 30+ years later Susan

Here's the book I always recommend: http://www.amazon.com/Healing-Lyme-Prevention-Borreliosis-Coinfections/dp/0970869630/ref=sr_1_1?ie=UTF8&s=books&qid=1309482612&sr=8-1 I've been using these herbs in the core protocol and I can tell they are helping. But I am also on abx so I can't give you any herb only experience. The book will give you a good place to start if you need it. I had horrible herxing with Cats Claw. I had to build up very slowly. Susan

OMG! I'm buying some Damminix today.