FallingApart

Thanks for the response... I was/am totally prepared for the horrific behavior. That is exactly what I was expecting. Ever since all "this" happened 2.5 years ago, DDs symptoms have all appeared to be behavior based. Or at least that is what we have noticed because they have been the most obvious. I was surprised to see a belly ache because this has never been obvious to us before. The psyciatric behaviors staying constant-I can handle. If they get more extreme I will need to check myself into the hospital just for respite.

Hi all, We are only about a week into Lyme treatment so Idon't think I truly understand herxing. But should I assume that anything odd is a herx? And do I take that as a good sign? DD5 had an initial bad behavior reaction to the new abx. I was prepared for that and fully able to handle it. But today, she is having wierd stomach issues. She is telling me her stomach is warm and she had to lay down. She is a tough cookie, so whatever this is is stopping her in her tracks. Her forehead is a bit warm but not a true fever. Also, if this is a herx, that is a good thing, right? Thanks!

I'm having a hrad time understanding the definition of congential lyme. can someone briefly explain this? thanks so much!

Can you share some of your herxing stories? DD started with her Lyme meds on Friday night and immediately "regressed"/"herxed"? For at least the past year we have seen this with her. We have always attributed it to an exposure to strep. I was expecting this reaction with the start of the meds and so am happy that she showd signs of an exacerbation. But, what does this mean? She was a wreck yesterday and is much better already today. We've seen this pattern before. Can I hope that this time it is different since she did start the Lyme meds? Also, I did a lot of reading on herxing and saw that some people mentioned that when a symptom showed itself in a herx, oftentimes it never came back. I have a hardtime believing they are talking about PANDAS children. Can anyone lend some insight here? Thanks so much...

ATHanks for the advice of ebates, etc. I was assuming I would have to buy everything through the LLMD, but it is great to know I can internet shop!

I was thinking that the abx would be the easiest part of this whole thing since they should be covered by insurance. Is that wrong? And Michael, I agree on the probiotics being so expensive. If you have found a "good enough" probiotic, can you share? Thanks all!

OMG, that is so awesome! Thank you for giving me hop that it is possible. I was kind of under the impression that it wasn't covered at all!!

For those of you who are a bit further down the road than us, can you offer any pointers on how to go about this the most economical way possible? Like all of you, we have been on this road for several years and funds are getting tighter. It seems like the Lyme path is the most out of pocket treatment thus far. So I was wondering if you have learned anything on how to best go about this? Thanks so much all.

Hello, Just wondering if anyone has had the Igenex tests successfully covered by insurance? We have 2 so far for our family and are trying to budget accordingly. Both tests have already been done (just waiting on results) but now we have to actually figure out how to pay for the tests. Thanks all

OMG you just described my life... Dear Suzy, Do you recall how I told you last year about DS spending three days in the PICU for blood dialysis for his rare autoimmune disease called Pandas? Well, when he didn't get better, we spent thousands more sticking a needle into his hand for two days to infuse him with antibodies from other people. When that didn't make him better, we found a doctor who says he has lyme disease and now he takes 11 pills a day. Now that researcher in Oklahoma has looked at his sister's blood and it looks like she has the same rare autoimmune disease and also has lyme. But so far, she's only taking 7 pills a day. The good news is that the kids no longer have OCD, no one thinks DS has Tourettes or aspergers and he can finally read at grade level. Hope all is well with you." The only thing is that we aren't yet taking 900 pills for Lyme. We are only in the diagnositc stage but are super excited to be in this stage.

We have been taking this for about a year off and on. My sister sent it to me from a company out of california. My girls don't love the taste, so we have to disguise it and use it sparingly. We had been trying to use it every day, but they balked at it. When we first introduced it, they were 2 and 3 years old. Now, they are 3 and 5 and we can put it in chocolate milk and make it a treat. We give it whenever we see any illness come into the house and it has seemed to help our PANDAS daughter keep from showing phyisical signs of illness. I'm not positive this means she skipped the illness though. But her mood and other PANDAS symptoms do seem to stay constant even though other family members are ill. We do attribute it to the colostrum. Ideally we would like her to take it every day. But with all the other stuff we make her take, we choose not to fight this battle. I would highly recommend it if you can get your child to take it. Also, since no one else in the family was taking it, my husband started taking it to keep himself healthy and he has been the healthiest of us all. His thought was if he could keep an illness out of the house for our PANDAS daughter, then so be it. We also attribute his health to the colostrum. It's pricey, but again, we have seen results without using it every single day.

This test was for me, the mother.

thank you!

I just got my results for the CD57 panel as well. THe ped called them borderline. The % one i 3.0 where the ref is 2.0-17 The Abs one is 57 where the ref is 60-360 I wonder what that means.

Hmm, the Marshall Protocol makes me nervous. I hope she won't have a cookie cutter approach to all patients. I also saw that the MP hasn't been uniformly effective. This is overwhelming to me.

I have an appt tomorrow with Dr. Susan Marra for DD. Marra is one of the NDs interviewed in the "insights into Lyme" book. Just wanting to know if anyone here has any personal experience with her. This is not the route our ped was wanting us to go, so I'm a bit nervous stepping out on my own. I do feel good thatshe is interviewd in the book though!! Still waiting on my own lab results!

Hi again, So, I've been reading all of your posts and trying to learn as much as I can. One person mentioned that no further testing would be needed for DD if she has confirmed Lyme. Is this accurate? The only test we did was the HNK1 Panel, the CD57. DD was a 1 where the ref is 2-17 for the % test. For the Abs test she was 34 where the ref is 60-360 We have no info for any of this Western Blot that everyone is referring to. Is that something that we will need? I was assuming that we will need that test, but am now wondering. Also, what seems to be the percentage of moms who have Lyme when their children have it? I had this same test done on Tues and am anxiously awaiting the results. I have super wierd neuro isues that have never been explained and every test I have ever had run has been negative. INCLUDING LYME. But I don't think this test has been run before.

Hello all, Quick update to those who know me...DD has stabilized on the PANDAS front. I credit this ENTIRELY to homeopathy. I can go into that on another thread or can explain if anyone wants more details. However, she has never fully recovered and she always deteriorates drastically when around strep or another illness. She clearly has PANDAS but doesn't recover like a PANDAS child should. I asked the ped about doing a Lyme test about a year ago and she declined, but here we are. Last week we did a slimmed down version of the Lyme test, not the Igenix one. But DD came up as positive for Lyme. Obviously from here we will do the full Lyme test that you all are referring to here. We have a doc selected that we want to use, but his office is closed until March and who knows when we will get in once he reopens. My question is whether there are any general remedies that can be applied to all Lyme patients or are they all very specific and case by case? I see Bee venom, etc listed here and there. Are there general things that can be used? Since DD will have to do another blood test in the near future, I would also want whatever I give her to not alter the results of that test. I'm not one to sit and wait tight until I get to the doc if something can be done in the meantime. However, if I have to I will. It has been 2.5 years since this began and I finally feel like we might be getting somewhere. However, I also feel like I just inherited another child with special needs!!!!

Thanks Peglem. Did it come back? Or stay gone for good?

After seeing the naturopath yesterday we then went to the ped. Our ped is Dr. Keller so I have full faith in her. She thought about what the naturopath had to say and came to the conclusion that the strep in our carrir daughter has colonized - meaning her body has learned to live healthily with the strep in her. We decided to do both the clindamycin and rifampin together, but I;m wondering if any of you have come across a family member or personal story of a colonized strep situation and if you have been successful in removing it?

Reading your posts on Lyme has me thinking that way. I have my own, unexplained health issues that made the docs question Lyme. But the tests originally came back neg. If I or one of my daughters have Lyme, would we be seeing this improvement in our PANDAS daughter drom the separation we are doing right now? I am not up to speed on the Lyme thinking to know this. Our PANDAS DD has improved during her removal from our home. She is not entirely recovered, but much improved.

We are back from the Naturopath appt and are going to the ped in an hour. The Naturopath was a little hard for me to follow but I believe she was telling me the following. I wanted her to recognize the underlying infection in our carrier daughter and do something about it. But what happened instead is along the lines of what some of you said. She implied that the carrier daughter's immune system is not strong enough to fight off the infection and we have to build it up before she will be able to rid hrself of the infection. She gave her a remedy for immunity building. For the past few months I've been feeling that she (the ND) thinks I have Munchausen's but today she seemed to get the severity of it. She told me that we are now practicing outside of her comfort zone and that our situation really couldn't get much worse. However, DH and DD missed their flight this morning so we have one more day to try and stabilize this infection before the girls are reunited. I also read some of the info on Lyme and am shocked by how many names I recognize over there. I will definitely bring this up with the ped next.

No, we haven't done anything with the strep carrier daughter except try to give her abx to get rid of it. It hadn't even crossed my mind because the PANDAS daughter is in such bad shape. We are seeing a naturopath for both girls and she is the one that said we should be focusing more on the carrier daughter. Can you tell me more about the immune workup for the carrier daughter? What would I do and what would I hope to learn? I think that is a good idea. I'm stressed out though because my PANDAS daughter is to return tomorrow. We sent her to my parents' house which is all the way across the country. I'm considering having her stay there. But I think that is hard on the mentality of a 4 year old as well...

Ah, Olive Leaf Extract. You can't take antibiotics at the same time right? Have you ever heard of OLE as a strep erradicator?

We haven't pursued the tonsils because the strep is in her bum. She has never had it orally. Our ped doesn't think the tonsils would help.