Suzan

Dawn, I am so glad you are finding out more that will help you all get well. Look forward to hearing the updates. Jodie, I am very happy to hear you are starting to feel better! After 6 weeks of my treatment, I am having some amazingly good days! Susan

I just started zith for lyme last week. My LLMD said to take 1 pill and then wait 3-6 days for the herx. Once it passes, I work my way up to the full dose over the next week or two as I can handle it. Now this was after having taken cyst busters and other meds so maybe that makes a difference with the herx. I've taken zith before for other reasons with no trouble. Also, my dd's took zith when we though it was "just" PANDAS and they did not herx when they started it. They actually showed improvement within days (at the right dosage). Susan

I agree, hold off on the steroids. My dd9 reacted to augmentin but I think it was a herx (in hindsight). Do you plan on looking for an LLMD in your area? I am very glad you tested! Looks like you are dealing with lyme. Susan

This is not the same but it made me think of my dd8 when she was little. She had a huge hemangioma birthmark above her eye. It was big, bright red and puffed out maybe an inch at times. After she started treatments, it would look even worse. She went through many laser treatments and a few surgeries and she looks great now. Looking back on her baby pictures can be hard because we have forgotten how bad it was. But it is a reminder to us how far we have come and how blessed we are that we were able to stop it's growth and it didn't overtake her face (which was a danger at the time). She was beautiful then even with the hemangioma and she's beautiful now but I did stress about photographs. I just treid to pick the best picture of her and be strong about our treatment of her birthmark and how much we loved her. Anyway, I hope that might help. I agree with Fixit that you will have a memory of how sick he was and how healthy he will become. Hugs! Susan

This all reminds me, since my dd9 was already on zithromax for her pandas, our LLMD felt comfortable enough to continue on that treatment until we were ready to start her treatment (2 months). We did this so I could get well into my treatment and be stable to take care of her. Then, as you start other treatments, you build up slowly so you can be sure to withstand the herx reaction. So I agree, you are OK to wait until you see your doc next.

Hi, my dd9 (who's test results were similar to your ds) will hopefully get her med orders this Friday so I can post then what we will be doing. I hear it will be similar to my protocol, just different dosage. She is already on zithromax so I suspect we will add flagyl 3 days a month, amoxcillin (although I hope to get something else in place of that because dd has not responded to that abx in the past) and anti yeast meds. There are the three stages of lyme that need to be hit to get rid of it and the different abx will hit the different stages. Susan

I have not gotten the results of my cd57 test yet so I don't really know what all this means. I do know I have heard that the cd57 test is not reliable in children. I have heard some LLMD's test children but many do not. Susan

When I was waiting for my dd9's test results, I became positive that she had lyme. When her test came back saying Negative, I was sick with confusion. It took me a while to feel sure again but with the help of the forums and other mom's who had gone through it, and seeing our LLMD, I did and I feel confident about our plan to treat. I think your plan with DH sounds like a good one. Take care.... Susan

Try the Texas Lyme Suport Group, http://www.txlda.org/ They can probably send you a list. I got ours in NC by contacting ilads at http://www.ilads.org/ . Good luck! Susan PS... With your Igenex results, I think you should plan on a trip to the LLMD!

It is possible to get a "probably" that is still negative based on the Igenex criteria. The lyme could be hiding and dormant or your child could not be producing good antibiodies for the test to read. If your child does have lyme, after a good round of lyme antibiotic treatment, a positive result is often drawn out. I guess Igenex had to designate some standard and the LLMD's are still reading yet another standard. One of these is the case with my dd9. She has a positive and two IND on lyme specific bands so Igenex said it was negative. But her sister and I both had positive Igenex tests. Based on that, and her clinical presentation, she will be treated for lyme. We'll test later and will hopefully see it positive. I say hopefully since this will give our LLMD what she needs to move forward with no question, even though she doesn't really have any doubts.

Oh here, I found this from SF Mom's post..... This is what Dr. Ann Corson Pediatric Lyme Specialist says about WB results. "A positive Western Blot need only show one species-specific band to demonstrate exposure to Bb therefore confriming a clinical diagnosis of Lyme Disease. These species-specific bands are: 18, 23-25, 31, 34, 39, 83-93" Western Blot Bands description: 9 cross-reactive for Borrellia 12 specific for Bb 18 unknown 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 31 outer surface protein A (OspA), specific for Bb 34 outer surface protein B (OspB); 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 Bb infection and is specific for all Borrellia 45 cross-reactive for all Borellia (sometimes people with Lyme who have this band positive also have the co-infection Ehrlichiosis) 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

Our LLMD would consider this a positive test (or conservatively, she would consider, with symptoms present, it is worth treating and test later to draw out the positive result). Most LLMD's are now considering any positive band that is lyme specific to be a positive test. I'll have to find the post that explains each band but I think 31 and 83-93 and maybe 58 are lyme specific. Don't quote me on those though, I think SF Mom posted the band specific results. HUGS! Susan

Too True! I have heard of a couple of others but no references or recommendations for them yet.

http://www.lymememorial.org/State_Stats/State_Statistics_North_Carolina.htm Did someone say their doctor told them there is no lyme in North Carolina? I can't find the post, did I dream that? If I didn't dream it, here's some info on NC statatistics. Susan

I hope to cure everything with lyme treatment! But I know that's probably not realistic so I'll just have to wait and see, even though I hate that! Susan

This happens at our house too, not the headaches but the inability to understand the words. This can be a symptom of lyme as well. It has improved for me after only a month (although I suspect it will come and go for a while, who knows?!) Susan

This is my dd8. She will ask what day is it? Is it a school day? Have we had lunch yet? Her issues seem to go along with the time of day and what day it is. But she will also ask the same question having forgotten she just asked it and she won't remember much of anything it feels like at times. She does have seizures and it could be from that but she also has lyme and I know poor memory is also a sign of lyme. She just started her seizure meds recently since her seizures came back but I don't think it got much better while her seizures were gone. I'll have to see once she starts her lyme treatment if it gets better. Susan

I have Hashimoto's Thyroiditis (high anti-thyroid antibodies) and I'm on thyroid replacement to help with symptoms. Although never good to have lyme, it's good to know so I'm glad you found out! Susan

Thanks for posting about this. I just read up on it and I think this is something we would like to use. The portable ones are pretty affordable, if they work well.... Can children use them too? Susan

Us too. My dd9, during an episode, is always MUCH worse in the morning and evening. dd8, who has the most difficulty with her eating habits, can't eat at home but is better at eating other places. s

My dd9 is going to be treated for lyme based on her Igenex results and clinical diagnosis. Her igenex test was IgM 41 IND IgG 41+, 31 IND, 34 IND That leads me to believe with your results, you should follow up with a LLMD. Is your doc a LLMD? We are going to treat her with the expectation that we will draw a positive result after some treatment. Especially since her sister and I are both positive already. Susan

Hi, I am replying late, somehow I missed your post but I wanted to give you some support and hang in there! Parental instinct is the most important thing. We know our kids! Where do you live in NC? I'm in Charlotte and we are dealing with lyme and pandas. Have we PM'd before? If so, I'm sorry (I have lyme brain sometimes )

My thinking is that lyme is cyclical and could have a wax and wane pattern like pandas. Lyme has three stages and a life cycle so this can cause symtoms to come and go. The coming and going is commonly seen in lyme. Someone with more lyme experience than me may be able to give a better explanation than that. Susan PS... I am very confused about which symptoms are lyme and which are pandas in my girls. I am just holding on to the thought that they will all be resolved with lyme treatment but only time will tell.

I am curious to know what the symptoms are that are JUST PANDAS and the ones that are JUST LYME. My LLMD said something similar when I asked her if she thought my dd's pandas would be gone after her lyme treatment. She looks at the symptoms that are generally seen with lyme and expects those to resolve with lyme treatment but those symptoms that are generally seen with pandas (I think it was OCD) we would have to wait and see. When I look at the lyme symptoms, they seem to cover the pandas symptoms pretty well. Maybe the sudden onset and strep connection?? I don't know how many families on this board are now dealing with lyme now but it sort of surprised me that he has only seen 2 paitents with both pandas and lyme. We didn't have sudden onset since my girls have been affected since they were babies so maybe that is a difference. I don't know, just thinking aloud. Susan

My dd9 had an IgM +41, IgG +41, 31IND and 34IND. Our LLMD believes she has lyme based on her symptoms (and the fact that dd8 and I are positive for lyme) so she will treat and test later to see if we draw out a positive result. I believe too that she needs to see and LLMD with these results and her child's symptoms. Susan