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Get the whole family tested???

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Lyme Disease
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Posted 3/16/2012 3:52 AM (GMT 0)

Yesterday I spoke with my Dr, and he does believe I have Lyme disease and wants to treat me for it.  I did not meet the CDC's guidelines because I had 4 positive strands, rather than 5, but due to the specific strands, my Dr. believes it is Lyme.  I don't quite understand all of this, it's all new.  I was diagnosed with Hashimoto's 2 years ago, and many symptoms are similar.  My question is about the rest of my family.  While waiting for my tests results, I began to research Lyme, and it being transmitted to children.  Here are some issues that my children have:

DS:  Eczema, asthma, allergies, aspergers, sensory processing disorder, anger, anxiety, suffered a stroke and seizures at birth. 

DD:  Complains of neck pain daily (points to the front part of the neck where the thyroid would be), has bilateral cervical ribs "extra set of ribs", a lot of "growing pains", drastic mood swings.

DS:  Asthma, allergies, displaying signs of sensory processing and adhd (he's 3, no tests done).

My husband has IBS, and the past few years has signs of depression and increased irritability. 

Should I have my whole family tested?    Pros/Cons?  Any other info would be great! 

Posted 3/16/2012 4:10 AM (GMT 0)
Also, we suspect possible mold in our house, and I see that symptoms of illness due to mold are similar too. So hard to figure out what's what.
Posted 3/16/2012 4:02 PM (GMT 0)
Just bumping to see if anyone has any suggestions for me. Thanks!
Posted 3/16/2012 4:41 PM (GMT 0)
Hi Diam and welcome!

I'm glad your DR is smart enough to acknowledge that even though ALL the bands weren't positive, that it looks like you probably have Lyme. However, I would run, not walk to an LLMD (Lyme literate medical doctor) as they are the only ones who can really help you and your family, who in my opinion (I am not a doctor) sound like they have Lyme too. I've probably had this since a young child and I also complained of joint pains and was dx with "growing pains". I also had ADD, anxiety , skin sensitivity and more.

I don't know where you're located, but if you tell us, we can possibly suggest some LLMD in your area.

I hope your family gets to feeling better soon! Please stick around, we are such a wonderful, caring group! :-)
Posted 3/16/2012 5:03 PM (GMT 0)
Thank you. I'm feeling very awkward about this, especially since the tests technically says "negative" on it. I've struggled so long feeling like a hypochondriac, then when you go to several Dr's and they tell you nothing's wrong, it reaffirm's that feeling. Even though my Dr says I have lyme, I wish the test said "positive", then I would be more comfortable saying I have it. I didn't even tell my husband about it last night. I've been married 13 years, and have suffered from depression and a host of other things for about 12 years. While he is a good guy and has "put up with me", he's kind of "checked out". I think he's tired of hearing about my struggles. I quit talking about it a couple years ago, and started seeing a counselor to have someone to talk to.

So, today I "emailed" him to tell him that the Dr said I have lyme. Maybe it's just me feeling insecure, but I feel like he thinks it's in my head. Now, to tell him I think we should have him and the kids get tested, he will for sure think I'm crazy!

If you have any suggestions on reading material that I could share with him, I would appreciate it. Any and all info is appreciated.

Oh, and I am in Missouri. I saw Dr. C in Columbia, MO last month, and will see him again in July. Can a regular Dr do a Western Blot test? I just wondered if my children's Dr could do the test since. If not, I'll schedule an appointment for them with Dr. C.

Thanks again!

Post Edited By Moderator (borderlyme) : 3/16/2012 11:30:09 AM (GMT-6)

Posted 3/16/2012 5:09 PM (GMT 0)
There are different types of Lyme positives. The Igenix Western blot gives a positive if you hit 2 starred bands.

It's very hard to hit a "positive" by CDC standards and you can't diagnose this disease through tests alone anyway. There are too many false negatives. You have to consider symptoms with Lyme disease. Lyme spawns autoimmune conditions so they are commonly found together.

With what your tests returned, it sounds like it is a positive and your doctor understands how to read it properly. You can't go by the CDC guidelines

 

Posted 3/16/2012 5:15 PM (GMT 0)
Thank you.
Posted 3/16/2012 5:38 PM (GMT 0)
Hi diamblessed - welcome to the forum! So many of us here can relate to being made to feel like a hypochondriac - you are certainly in good company!

The western blot is simply not a reliable test for Lyme disease; there is no reliable test for it, yet. Lyme disease can suppress the immune response, so that the antibodies the WB is testing for cannot be produced. Most doctors don't know this, which is a huge part of the reason people go undiagnosed/misdiagnosed for so long. Most doctors don't know a lot about Lyme disease - it takes us patients quite a while to understand it all! The "New to Lyme?" thread at the top of the forum is a great place to start - with Lyme, research is your best friend!

I can totally understand wanting the test to be positive - I've known I had Lyme disease for a very long time, but when I finally got my IGenex positive test I felt so validated, finally - although my insurance company still requires the CDC positive (although the shouldn't), which I still can't get, even though I do have Lyme - so frustrating!

I couldn't really tell by your initial posts - what kind of doctor are you seeing? I would definitely encourage you to see an LLMD, if you aren't already, as they are the only doctors trained specifically in treating Lyme disease. (Also - just so you know I had to edit your post - we're not allowed to post doctors' names here on the forum).

As far as getting your family tested, it certainly couldn't hurt, but again, the testing isn't particularly accurate. Your best bet is seeing an LLMD who can make a much more informed decision about whether Lyme is the issue.

I know that none of this is easy, and I'm sorry to hear of all you've been dealing with. But you've come to a great place for information and support - we're all here to help any way that we can!
Posted 3/16/2012 7:07 PM (GMT 0)
Sorry for posting his name, thank you for lettine me know. He is a family practice medical doctor who specializes in borrelliosis and Masters disease. He spent 5 years of his practice working with the Dr. and Masters disease is named after.
Posted 3/16/2012 11:55 PM (GMT 0)
Diamblessed, how hard to not have sympathy in your own home. I know that feeling. I am not sure, but it felt like my ex thought I enjoyed making up new sicknesses to worry about. You do want to be able to say "See! I didn't make it up! It is real!" I also have a personal critic in my head that says things like, "Now, you think you have Lyme? Come on, you know it's just uncontrolled anxiety." It was very validating to have a doctor that listened.
Hope things go well.
My son has had two known ticks, without rashes. He seems fine most of the time, though some days he feels like he has a low blood sugar, shakey, bad feeling. I don't know if I should get him tested.
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