Friday, March 25, 2011

The BEST news a mother could ask for!!!!

I had my 4 yr old daughter tested for Lyme a few months ago and no one could agree weather she had lyme or not and what her treatment should be. Her labs were tricky and she didn't have a whole lot of symptoms and some of which could be lyme or something else. I had more docs saying she had lyme over not. So I believed she had lyme since thats what I was being told, but then started to question things the more we got into it. To add to her case she has MCAD a metabolic disorder that complicated her case big time. So we decided to fly out east to the best peds lyme doc there is to get some answers. After flying out there, spending a lot of time with him and going over everything possible he said he doesnt think she has Lyme Disease!! Some other docs were jumping the gun with her. Awesome news!!! And a HUGE relief!!!!!!

I have been getting a lot of questions from a lot of people about this and why some said she had it and some didn't. It easy for me to understand it since I understand the Lyme world but it's hard to explain sometimes. I will try to do my best to answer what people have been asking below--

Diagnosing Lyme Disease is tricky, you can't just go off of labs. Her titer was high on the ELISA Test but her Western Blot Test was indeterminate. 3 bands showed up indeterminate and of those 3 none were the Lyme bands. Mine on the other hand were. The titer could be high for other reasons not just lyme so you can't just go off of that which is why the ELISA Test is crap and shouldn't be used, especially alone. He doesn't think she shows symptoms for lyme or co-infections, she is totally on track intellectuality and very smart, physically her muscle tone issues are most likely related to her MCAD and common in some MCAD kids. He has no idea what is going on with her skin so she will need to see a dermatologist. He said its not Lyme or co-infection rashes, more like eczema rashes. The only thing I can't explain is her electrodermal screening test. It said she had Lyme and Babesia like me. That's the only thing that worries me but he said those can be very tricky and sensitive and have to be set JUST right and should never be used alone to make a diagnoses. According to him they can be adjusted to get the results they are looking for. He was much more thorough than anyone else, did a full exam, a special exam, looked at labs, checked her eyes since her one turns in, checked her glasses, looked at her skin, went over her total history and mine. He is the best out there, has treated 18,000 kids and I have to trust that he is correct in his diagnoses. He is a very well educated man that knows his stuff and from mine and my husbands point of view he did the best exam and history check we have seen!!

Sunday, March 13, 2011

No One Want's To Talk About It

I am choosing to write about a very controversial topic because its very common in the Chronic Lyme Disease community and I think its something that needs to be talked about.

Many Lyme people die each year from suicide. It's such a hard disease to deal with-you are on so many meds, you feel like crap a lot of the time, not many people understand, you really have to know where to look to get the support you need from others that are going through the same thing, even close family just don't understand and their helping words or actions may makes things worse even though its with good intentions, meds can really mess with your brain because of die off, you are so dang emotionally and physically exhausted, you morn the loss of the life you had before Lyme, it seems never ending, it's a very long process and can take a long time before you are well again, you feel bad that you are always having to disappoint your friends and cancel on get togethers or all you can do is sit and watch movies or chat because you are too drained to do anything else, it is SO expensive to treat Lyme and it causes a huge burden on your family, you feel like your job suffers and feel guilty, I always feel like I am letting down my daycare families even though I still do almost everything I could before just slower, you are totally exhausted from working a full week, you just feel like you can't do it anymore and feel maybe it would be better if you just end things so you aren't a burden on those you love anymore.

What do I do to get past those feelings—I make sure I am around a friend or my husband when I am feeling low or lonely, I call my therapist or make an appointment-she is awesome at talking me down and good at playing the guilt card when it involves abandoning my child and husband, call a Lyme friend, go to a Lyme support group, post on my on-line Lyme groups, call my Lyme doc, go to sleep, cuddle with my pet piggie-animals are so therapeutic, cuddle with my daughter or husband, make sure I am around my child-if I am around her I am safe, leave the house and do something fun with someone, go out with my girlfriends that understand and are really supportive of me, write in my journal, detox using the sauna or epsom salt bath to get the toxins out, go to a movie, have a written plan, and if really bad then check myself into the hospital. I haven't had to yet and hope I never have to.

What have some of my Lyme friends said that help them-Get neighbors and friends involved, consider going to a DBT(Dialectic Behavioral Therapy) Group, remember you are a hero to at least somebody, have a written plan, at least once daily (& sometimes several times daily) do visualizations, seeing yourself healthy & beyond the severe challenges, doing what you enjoy and doing what you feel you were put here on earth to do, see yourself thriving & not just surviving, having family support, meditating, applying your faith, and distractions are all therapeutic.

We have to fight this nasty disease, it can't win, we can't surrender to it, we have to remember we aren't alone and others are going through the exact same thing, we just have to reach out to them and others. We are much healthier than we would be without treatment and we are on the right path, we can't dwell on the past or the future, we have to focus on the now and focus on making ourselves as healthy as we can for now so we will have a bright and healthy future ahead of us.

Monday, March 7, 2011

Lyme Disease and Pregnancy

This is such a controversial topic. Everyone has their own opinions and there are many different ones. It's the hardest one for me when dealing with Lyme since I don't feel my family is complete just yet. I would like to have one more baby to add to the family, just one more, that isn't too much to ask for is it? Well with lyme, it could be. I have had 10 months of treatment now and I don't see an end in sight which is incredibly frustrating. Looking back I think I unknowingly had Lyme for 9 years and unknowingly passed it along to my 4 yr old daughter during pregnancy. No one will touch her as far as treating her in our area because she is such a complicated case. She was also born with MCAD a metabolic disorder that complicates things to say the least. Although MCAD has nothing to do with Lyme it can effect how she handles treatment. So we are flying out to CT in a couple weeks to see the top Peds Lyme doc there is. Anyways, I mention all of this because this is also an added thought when we consider adding to the family. Our next child would have the same odds as my daughter for MCAD, a one in four chance. So we would be risking the MCAD on top of the Lyme. I feel we have a handle on the MCAD part of it and we know how to take care of a child with it, Lyme on the other hand scares me to death. Do I want to risk having an incredibly tough pregnancy, delivery and postpartum and risk passing it onto my child? Some say as long as you take meds during pregnancy you won't pass it to the baby, some say you won't pass the lyme but could still pass the co-infections, some say it's totally selfish and they would never ever risk it, some say it's worth the risk and you never know what you could be passing along to your baby anyways...Where do I fall in all of this? I don't know. I feel stuck in the middle of it all and worry about every possibility. I could have a totally healthy pregnancy and baby but I could also have a really hard pregnancy and could pass it along to an innocent baby. With my daughter I had a really healthy pregnancy other than puking my guts out for the first 4 months. The delivery went great and she was healthy and pink when born. We found out at 3 days old she had MCAD and have had our fair share of hospital stays but other than that she has been a healthy kid. I pretty much had her tested for lyme as a precautionary because I figured I had it longer than I first thought. Sure enough, she has lyme. She went 4 years with out us knowing she has Lyme Disease. I could have another experience like that and could have a healthy kid and not know until down the line that under the surface there is a disease attacking the child's body like my daughter. Some one got through to me last week and I felt better about possibly having an only child, but it's sure not easy to except when you aren't really the one deciding, it's your health getting in the way of it. Way, way too much to think about when considering adding to your family. My brain is telling me one thing and my heart another. I am lost in it all!!