Suzan

dd8 started KPU treatment about two months ago {edited the date, I realized I was a month off}. She has increased rashes under her arms and large pimples randomly around her body. She has also started getting ankle pain (seems more like easily twisted ankle). Three days ago she complained of sore groin and she has 2 bumps there. I can't press around much because it's so sore so I can't tell how hard they are but they seem like nickel sized knots. Has anyone had experience with this? I am assuming it's swollen lymph nodes or something like that. I have tried to increase detox efforts. I'm not sure of the danger so not sure how soon to take her to the doctor or what they would even do if I did take her. She is on KPU treatment because of her lack of response to lyme treatment and overwhelming KPU symptoms list even though her KPU test was normal. Susan

I think it helps with bartonella although I think specifically they use others more often. I am on doxy, zithromax and flagyl (2x a month). You will probably be on different antibiotics over the course of your treatment. Keep the faith and you will get better. Take good care of yourself and you will find you feel better over time. I don't know about whether we can get rid of it completely but the quality of your life will be much improved. I know a lot of people believe you can be cured so you should believe that too (me too). A positive attitude goes a long way. I was a mess a year ago. I am much, much better now but not yet cured. HUGS. Susan

I think doxycycline is great for lyme but it is strong. I had to work my way up slowly because it affected me so much. Be careful in the sun. It can cause sensitivity and quick burning. I didn't get tested for bartonella but my LLMD thought I had (have?) it. She used antibiotics that would cover for it hopefully. Susan

Yep, you've got lyme! This is good news to have, not that you've got it but that now you know and can start to work on getting rid of it or getting it under control. CDC positive for IgG I think means that you would show up as positive on the regular western blot. Does anyone know if Igenex reports CDC positive to the CDC? Are you on treatment? What are your next steps? Susan

Wow, freaky, I would be nervous too. How much will you lose if you don't put your LLMD visits through insurance. My insurance won't pay anything. They put every claim I put through to a 3rd party and ask for more info and then deny it. Since most follow ups are on the phone, I don't even submit those since I know they don't pay for phone calls. Main thing I would think is to be sure they don't get ammunition to start denying other claims. I hope others have experiences or knowledge to share with you. You are being good to questionan and decide what is best for you before doing it. Susan

Hi, sounds like the mold is an issue but I don't know too much about it. You did remind me of my dd8 who has not had much reaction to her tretament. I am treating her for KPU with the CORE treatment plan for zinc deficiency. This has showed us the most herxing from her that she has ever shown (which still is not a lot compared to others) but also improvement in her overall status. Not sure if it could be an issue at your house but worth mentioning. If you google kpu/hpu Klinghardt you will find his video and an article about it. HUGS and good luck.

Happy Dance!! Great News!

HUGS TO YOU! I know you will get treatment and although times will be hard, you will feel better. Having direction and a goal is 1/2 the battle it seems. Susan

Thanks! I've seen it but I've started watching it here with my girls. They are very interested in it. I hope it's not too much scary reality for them. So far (35 min in) they have lots of questions and seem to be handling it well. Susan

Yes, I believe so. Where did you grow up? I believe I got my tick bite in the early 1970's in either California or North Carolina. I don't know for a fact but this is what seems to make the most sense. In CA, we were camping all the time. We did tick checks in those days for Rocky Mountain Spotted Fever but didn't know about lyme then. I am diagnosed with lyme and probable bartonella. Susan

Oh good! I keep it on my bedside table and refer to it often. Let me know what you think of it. dd10 stayed home today. She felt better and worse throughout the day. By this evening her nose was running. I go back and forth between thinking it's a herx to thinking it's a virus. No fever so I'm glad about that. I get so nervous with stiff necks. She was so cute though. I was comparing all the difficulties she was experiencing from the pain and stiff neck (getting up from lying/sitting, getting dressed, etc.) to the time last year when my arm was paralyzed and I had so much neck pain. She said "OMG, it was that bad and we didn't even help you at all". Now she knows a little bit of what I went through and she recognized it on her own. I thought that was cool. Susan

If your doctor won't order it, I had our chiropractor sign our order for Igenex. So if you have other types of health care people on your side, there are others who might be able to help.

Nancy, I have run out of charcoal but I do have bentonite clay which I'll give her this morning to see if it helps. She's been taking alternating weeks of DMAE and Chorella for detox. She's in another salt bath right now. I'll be sure to have her do the sauna as you suggest. She has a sore throat and is very tired this morning but she can move her neck more. I learned all about these herbs by reading Healing Lyme by Stephen Buhner (hope that is spelled right). It's a very great book. I started trying out the herbs along with my abx as an experiment before even thinking of trying the girls on it. I can really tell a difference in how I feel. I think alone or with abx, it's a great program. Email or PM me if you want more info. Susan

That is wonderful! Wow, what a great update! I am so happy for her and for you. I just posted a pretty good update on dd10 although she still needs some help. My dd8 is still pushing through her symptoms. I need to get out there to see your same doc but since I have no money I'm trying to get through it here. If we can't, I'll find a way to get to Denver..... Keep up the good work and I look forward to your next great update! Susan

I'm starting to transition dd10 onto Buhners herbs, in tandem with her antibiotics for now but with the intention of getting her off abx because she is not improving anymore on abx and the candida is becoming a problem, I think. I am starting very slowly since I know what a punch cats claw gives. I started resveratrol and andrographis, just one a day for a couple of weeks. This week, I gave her one cats claw every other day so I think she's only gotten 3 pills. Today she came home with a stiff and painful neck. She can't move well in one direction or up and down and any bumps jar her neck. Scares me for things like meningitis but she has no other symptoms. When I realized it was probably a herx, I got all excited and exclaimed how great it was if she was herxing again. LOL, she did not think it was so exciting. I've given her ibuprofen and benadryl tonight along with an epsom salt bath and some heating pad time. She is sleeping now. I hope that will be enough. If it's not better she won't be able to go to school tomorrow. In case you don't know about her, DD10 started out with a pandas diagnosis but was not improving with IVIG and had very bad pain every day. Burning pain, muscle twitching, aches, roving pain, periods of inability to walk, along with all her pandas symptoms. She has improved so much after 9 months of lyme treatment. Rarely any pain! But she has not improved much in the past few months. She has emotional liability, anxiety and some OCD as her primary symptoms left. Susan

When I was younger, I would have horrible reactions to doxycicline and any of that family of anitbiotics. I would get super strange nerve pain up and down my legs that was horribly painful and burning. In retrospet, I know now it was because I had lyme and I was herxing. I would go to the doctors and they would insist that it was not related to the medication and it was not an allergic reaction or anything. It only happened while on the medicine. So you just reminded me of that story with your doc's reaction. HUGS! Susan

I'm not familiar with Acyclovir but sounds like it could be the hydrocortisone. Hope you find a good doc to look at the lyme. I have heard TX is tough to find. I hope her blisters get better fast!

Hi there Nancy D! We did the valtrex before we knew about the lyme, started 11/09 (has that much time really gone by?). She was on zithromax at the time but that it is (along with supplements, probiotics) and we were pretty much in the thick of things with her symptoms of ocd and pain. I did not see any negative stuff that I could attribute to the valtrex. I did notice that when I would stop it, her behavior would get worse and when I started it again, her behavior would get better. Not normal, just not as bad. I would not say it was the most useful thing we did, but it was useful. I think clearing as many viruses as you can will help get rid of the lyme and strep. Good luck with the valtrex. I would be interested in hearing how she does on it. Susan

Cobbie, I am so sorry you are going through this! I don't know how much help I will be but wanted to give you some cyber support anyway. I'm not a teacher but I would not want to homeschool my kids either. I am an emotional trigger for my dd10 and I don't think we'd get anything done. The 1 hr of homework a day just about kills me. I hope the doctor has some good suggestions for you. Do you have a 504 Plan or IEP at the school? Susan

Hi, there, I did get an email about your post here so I popped over to see what your question was. I am sorry about your bad experience! What was the antiviral she took? My dd with the high HHV6 is my 10 yr old. My 8 yr old has not been tested though so I'm not sure about her. But my 10 yr old, she ended up taking Valtrex for at least 6 months. I did notice an improvement in her behavior. I think it did help to clear the virus and did help with the overall picture. So Valtrex was OK for her in the end. LLM is right however, we have gone on to a lyme/bartonella diagnosis for us all. I know that many lyme patients don't react well to steroids so it makes me wonder about the hydrocortisone that your dd was given. dd8 has lyme/bartonella and the zinc deficiency that LLM mentions. You also remind me of some blistering sores that dd10 got all over her legs. The dermatologist told me it was molluscum but I always thought it was more than that. It cleared up when she started antibiotics (zithromax) for pandas treatment. Susan

Good luck and I wish you the very best! Looking forward to your update.

I have to give the melatonin at bedtime too. They usually fall asleep within 30 minutes of getting it. If I give it earlier, they are drowsy but it does not help them go to sleep. Actually if I give it too early, it's like we lost our window and they are sleepy but won't go to sleep. Susan

This is great news and confirmation that you are on the right treatment path. Hang in there and keep fighting! Susan

I know some people have used time released melatonin. Does he swallow pills? This would not work for dd8 because she can't swallow pills. I hope you find something that works for him!! Susan

Thanks for the reminder! dd is flairing and she just lost a tooth!