Suzan

Hi! I always have mixed emotions for a new member, no one wants to have lyme but it's always better to know so you can start getting treatment! Be sure to check out the explination of what each band represents. I think it's located in the Helpful Threads for Lyme Disease post at the top. My 10 yr old daughter (age 9 at the time of her test) had the most symptoms between the three of us but a negative test (results below). After 2-3 months on lyme treatment, her test turned positive. She is doing really well now. We are still working through her remaining symptoms but her nightly pain and period of of not being able to walk and extreme emotional liability are gone. oldest dd's initial igenex results IgG results, bands 31 and 34 were indeterminant. Band 41 was positive. IgM results - band 41 indeterminant Good luck and I know you will get a lot of information here! Susan

Wow, really great article. I had not heard of this before...

We used orange juice with a little success for a while but it sounds similar to your apple sauce experience. The only thing I can think of trying is a smoothie and mixing it in the blender. I ended up getting the pill form for my dd10 because she could not stand the flavor or texture. I just mix with water and gulp it down and I hate it too! s

That is great news! If you do get herxing from this, I really believe that this is a sign of more and more to come. We are doing KPU treatment for dd8. She is up to 2 core pills a day now (increasing by 1 pill every 2 weeks). The first 2 weeks she was struggling, getting kicked out of camp for hitting and stuff like that and getting increased rashes. Things have been status quo for now. I increase to 3 next week, just in time for school to start She did not test positive but my LLMD and I felt sure she was affected by it. I still can't tell if it will work for us so your post is reassuring for me too! Susan

My dd8 used to have glutathione daily through a cream. Our DAN! doc at the time recommended Kirkmans Transdermal Glutathione cream. It was smelly and annoying to us both to use. I don't know if it helped (this was pre-pandas and pre-lyme). I am thinking of going the ALA, NAC route with her to see if it helps. Susan

Just thought I would add that we are having a hard time with this too. Both my girls have horribly stained teeth. I read that amoxicilin can cause yellowing and staining of the teeth. My dd even had me call the dentist to see how much a cleaning would cost extra before school starts. I found that brushing daily with baking powder (soda? the orange box) really helps. Create a paste and brush away and it does help. Susan

This sounds so much lime what happened to me too. I did not have the migraines but the others you mention and more. I totally agree, get yourself tested too. I am doing a lot better since last year after going on treatment. HUGS! Susan

Good luck to you! I hope you have an easy journey but most of all I'm glad you are going down the path to wellness. Susan

Do you mean the lack of exposure to virus or bacteria? Do you mean that you aren't treating your co-infections because you might be able to fight them off and then build an immunity or something like that?? I guess I don't know enough about the hypothesis to really know what you are wondering. Susan

If you can get the picture posted somewhere on the internet, like snapfish or shutterfly for example, then you can post the link here for others to view. Those sites should have some instructions on how to get your picture uploaded after you create an account. My girls get rashes that come out after abx use or during detox too. I'm always looking at rashes trying to figure them out

Thanks for posting. It is good to read of her successes. It freaked me out too though because of the issues she had with abx use. I have been thinking about this a lot. I think I'm ready to try go treat with natural treatment. I've been helped so much by the abx but I'm afraid of pushing it too far. I'm ready for my life after lyme disease!! Susan

I don't have any info on that but wondering if you've looked into possible kpu/hpu? I can't remember if I've seen any posts from you on the subject. I know that adhd is a symptom and I'm hearing can be common with lyme. I'm hoping that treatment will help my dd8 with her adhd symptoms (as well as others). susan

I am interested in hearing any stories from those who may have switched to natural treatments. I think there were one or two? The yeast is really starting to get to dd9. I feel like I need to get her off the abx. She has a yeast infection right now and has inappropriate laughter and a weird disrespectful edge to her. In the past I'd think she had strep, but this time I'm leaning towards the yeast. I think she is in a holding pattern now with her current meds. No real improvement for a while now. I don't really know what the next step is. Also, her upper eyelids almost to the eyebrow are pink (red?) and it looks like she has makeup on. Does anyone know what this might be from? Thanks, Susan

We took the test, but it was not from Vitamin Diagnositcs so I don't know how reliable it was dd8 tested on the high side of normal. We are treating her anyway and she's reacting as expected if she did have KPU. I stopped all vitamins and minerals for 5-7 days per Dr. Klinghardt's recommendation (I picked 7 days) and I left any other supplements or meds (abx, probiotics and seizure meds). Susan

Wow, that is so cool! Super great!!

I'm so glad you have gotten in so quickly to the LLMD. Although my dd9's results had different bands, your results were similar to hers (minus the EBV though....). She now tests positive after a few months of treatment. Hang in there, LLM said it, going through the process you will end up on the other side. Knowledge is power right? You will have a path to take and things will change. Hang in there, good luck tomorrow. Susan

I know you know this already, but myco and high titers weren't part of our issues so I don't remember much about it. But I do remember that many doctors won't treat myco in the absence of symptoms. But we are dealing with more than just myco though with these kids! I think with high titers he should go on antibiotic treatment and it can take a while for them to go down. I just can't wait to get him to the LLMD and see what they decide. What about anti-viral treatments? Hopefully someone will read this this weekend that knows more than me!! Susan

For my dd9, the only time hers was off was when her appendix went bad. Otherwise, normal. Mine too. Totally normal. Susan

Hello! I am so very sorry this is happening! I do know heat intolerance is a symptom of lyme and also that many people with lyme can't tolorate prednisone. Are you able to take him off the prednisone to see if it helps his symptoms? I have seen another rare condition (on extreme home makeover) about body temperature regulation so I would just explore all avenues but with a pandas diagnosis, looking seriously into lyme is a very good idea. I imagine others will have more specific info to relate than I do. HUGS! Susan

Oh thanks, good reminder. Especially because I am taking some herbs that I think I remember they mention this specifically. I'll check it out. I also sent an email to my LLMD to see if she has any concerns before hand. I wonder what I need to ask for them to test for. Seems like a good opportunity... Susan

I have to have laparoscopic surgery to remove a cyst. There is a possible danger of having remove the ovary too. From a lyme perspective, is there anything I need to worry about or be careful about that would be any different from anyone else? Can (should) the cyst (or ovary if removed) be tested for lyme? Do tests like that work for lyme like with pathology tests or something? Thanks, Susan

Amazing! Wonderful!

Interesting!! When I was a kid I would break out in hives if my internal temperature was very hot (like running around) and the outside temperature was colder, like when the sun goes down and it starts to get chilly. I would get hives every time the kids were playing hide and seek at dusk at certain times of the year and it would be very bad on my face/eyes. I wonder if this was a response to lyme back then. I also had a hive type reaction to wheat. If I was itchy from eating wheat, I could not scratch it or I would develop a hive type reaction, but only where I itched. I didn't know it was from wheat until I went wheat free for a while. Then it became obvious. Susan

Yes, my girls had constant ear, sinus, throat, chest infections. Both girls had ear tubes. I had lots of strep as a child.

I agree, sounds like herxing I've had too. Our retired LLMD recommends heating pad for that type of herx. I have used it with myself and dd's and it really seems to help. Susan