Suzan

Her canker sores had already improved a lot by tonight. So weird. She had a very good afternoon and than crashed at about 5:30 when her symptoms came back. No fever tonight but not at all well. What is so sad is that her brain is not working right and she can't think well. I feel so sad for her. I don't have a sense of the co-infections after reading that. It's so confusing! Our lyme support doc didn't call us back today. Susan

She is also taking 500 mg daily zithromax and 1500 mg daily amoxicilin (plus all the yeast meds and probiotics, etc.) Her doc this am said she looked good, no signs of infection from his point of view. Chest sounded good, etc. He told us to take increased ibuprofen throughout the day and an extra zyrtec daily. We did that when we got home and she does seem a lot better. Her fever was in the evening. I will watch for that tonight. She was also complaining of weakness and chest tightness and her feet hurt.

Now she's complaining of rib pain like her rib on the right side feels broken. That's Babesia? Susan

dd9 came home yesterday saying she could not do any simple math. She could not do her math homework and was very emotional. I finally realized she must be sick. She had a slight fever. Then started complaining of thigh pain and joint pain. 3 canker sores. This morning, 5 canker sores, joint pain, sore throat, all over pain, no fever, very upset and emotional. What do you think? She has not had any medication changes. Her last flagyl dose was on April 17th. I'll be taking her to her peditrician but he does not know lyme. Strep swab, what else? Could this just be a bad herx at this stage in the game? Susan

I heard back from the doctor and he did say that they have had many cases where lyme disease has triggered celiac so I assume the non-celiac gluten intolerance too as well as so many other things. I believe (I hope) lyme will eventually become something that is screened for with any major health issue. I just don't know how long it will take to get to that point with all the political stuff going on. Susan

This is where I believe I got lyme (Yosemite and Sierra Mtns). When I was a kid, we were worried about Spotted Rocky Mountain Fever. I have lyme and possibly bartonella that we know of so far. http://www.cdph.ca.gov/healthinfo/discond/Documents/RockyMountainSpottedFever.pdf The CA lyme disease organization website has great information and interactive map, etc. that may be helpful. http://www.lymedisease.org/ Susan

I saw well knows Celiac doctor and researcher yesterday at the gluten free expo in my town, Dr. Fasano. He was talking about how in the past, they said Celiac was just a northern european problem, like someone drew a line down the globe and said all the Celiac's get on one side and everyone else on the other. That thought has changed by now so hopefully it will continue to get out there about lyme. I thought a lot about lyme in his speech because so much of the symptoms overlap. He said that they don't know why the presence of celiac has increased so much over the past 20 years. They've been doing a study since 1974 (not sure the specifics of what the study was) but what they found was the result of the study was that the number increased every 10 years by (don't quote me...) triple I think. I could not help but wonder if these people have lyme disease and it triggered their Celiac. Because they also don't know why some people can have the specific gene and never get Celiac. I did not get a chance to talk to him about it but I hope to try to email him. I really want to know his thoughts on the subject. Sorry, went off on a tangent there! Susan

One of my dd9's primary symptoms was pain and she would have episodes where she could not walk for a week at a time. She has pandas and has also shown positive for lyme. However, her first lyme tests came back negative (positive for band 41 and IND for bands 31 and 34). Based on symptoms, she was treated for lyme for 3 months, retested and now her tests come back positive. Can you get the Igenex testing done? I agree that an LLMD is needed and one that knows about pandas would be good. Susan

Holy cow! That sounds like what happens over here but not that many kids! That's the reason I won't put in a swimming pool ( that and I don't have any money or the right type of space in my back yard or the time or energy to take care of it )

You already know I'm leaning towards chronic lyme for you. Anxiously waiting for your Igenex results. In reading about cd57, it says it's not used as a diagnostic test but I can't find specifically why or what else might make this low if not lyme or HIV. Our LLMD uses this test as a gague for when to stop treatment. Susan

Wendy, what did they do for your HHV6 if anything? Our Pedi put dd9 on valtrex for 6 months. We never retested to check the numbers. Our first LLMD said valtrex does not work on HHV6. I did see an improvement in behavior while on it. I never had mine tested.

I am so sorry, thinking of you and I pray you will get some help during this to help your son.

Wow, that is great that your school is so aware. I'll bet you some others get diagnosed over the next little bit! I'm glad to see that your struggles have helped diagnose someone else! I was just thinking something similar about my work. There are a few people there I think need to seriously consider lyme. But they are resisting and would only talk to their regular doc at this point anyway. Susan

My chronic lyme was triggered by heavy stress and fear and then it was a quick and bad progression. I believe in retrospect that I had it from a young age. I don't know much about mold so I can't comment there but it sounds like chronic based on my experience. So glad he is getting some help! That is scary. I would look into mold too to be sure he has his bases covered. Susan

OK, this sounds good. I am so glad you got the trial abx. Keep track of everything that happens as far as reactions as the LLMD will want to know that to identify herxing and probably other stuff. I think it's smart to keep the other LLMD appt with the EE experience. I sincerely hope that this is lyme related and will clear the issue although treatment can be difficult and dealing with the herxing and stuff but in the long run, so much better! I look forward to hearing your test results and how you do. Susan

If lyme breaks down collagen and feeds on it, should we be replacing collagen or avoiding collagen? I know there is some controversy on how to best build collagen back up in general but I was going to try a oral powder to see if it would help with my skin (sagging due to weight gain/loss/gain/loss/aging) and to also see if it would help my knee situation (knees have become crunchy sounding and starting to get a little painful). Susan

Justine, what is the herbal mixture you are taking? Lismom, I'm interested in the GFSE and have not read about chlorella yet but will look into it later today. Thanks to all for your suggestions so far. I have left a message with dd8's neurologist to increase her yeast protocol as a start. I have the liberty of increasing mine as needed for a while until the prescriptions run out.

Can we have a discussion about candida and yeast treatment? Maybe there is already a post about this that covers it well but my searches aren't good. dd's and I are taking: Nystatin - 1 tsp daily swish and swallow Diflucan - 1 pill once a week (various dosings for age/weight) Caprylic Acid - 1 pill daily Probiotics daily Detox - Diatomatious Earth, Bentonite Clay and I'm also taking something for bile binding, forgot what it's called. If you are on three types of abx, is this enough? Should we be doing more? How many probiotics can you take in a day? We have 15 billion caps but also VSL#3 which is I think 225 billion. dd8 can't swallow pills so she takes 1 threelac packet a day. She's an awful mess right now and I can't tell if it's herxing or yeast. How do you knojw if you need to do more to combat yeast? Since I started the Doxycycline, I feel like I'm saturated in abx. I can only imagine what it is doing to us (aside from killing lyme). I can't wait to be off it but that is going to be a while. Susan

Good luck with your change. I hope it gets you the added boost you need. I haven't even tried to reduce EMF's yet since my life is so saturated, especially at work like you. Susan

Yowza! Glad you are seeing LLMD tomorrow. Look forward to an update on what he says. That is great that your doc will work with the LLMD and is ordering other tests too. susan

Yes! I am so glad! I can't wait to hear what the LLMD has to say about Shae (and you). Susan

I was surprised to read that North Carolina PBS is showing it in May, BUT, on a channel that only Cable suscribers get. Satelite suscribers don't get this one apparently. I'm writing them to find out why since I am on DISH Network. 5/17 8:00 pm Under Our Skin UNC-MX

I sent you an email asking about neurotransmitters....I was looking for a better link and found this one, it touches on most of the topics, as a start anyway. Not sure if it will be helpful or not, maybe will give some good dieas or other things to look into to try to help. http://restormedicine.com/naturopathic-approaches-to-lyme-disease-treatment/

I thought I would also mention, my lyme was triggered by a highly stressful situation last year where I ended up with Parsonage Turner Syndrome (horrific pain and a paralyzed arm). I went quickly downhill after that (muscle twitches, fatigue, pain, memory loss and more. Please pay close attention to your symptoms now, just in case. It will help to have this documented if you do have lyme. Susan

Hi, I wanted to mention that my dd sounds similar to yours where she never mounted her strep titers even in the presence of documented strep. Her IgM results were exactly like your dd's IgG in the beginning. After 3 months on lyme treatment, her IgM are now positive. I know that IgG should represent older infection and IgM newer, but I also have heard this does not always show a clear picture. Do you think she was bitten by a tick? Is there a possibility that you could have lyme and it was passed to her? Susan