Can someone please explain Lyme to me?

[EmersonAilidh]

I'm normally on the P.A.N.D.A.S. forum, but after a not-exactly-uplifting call from the doctor today I've been wondering what exactly Lyme is.

Like, at the surface P.A.N.D.A.S. is just "You get strep, your antibodies attack your brain, your brain gets mad." but when you get more into it you learn about titers & GABHs & the BBB & all sorts of stuff.

Could anyone give me a more detailed explanation of Lyme? All I know is that a tick bites you & it just messes everything up. :/

[NewBeginnings]

Hi there,

 

Has your Dr given you results that it is Lyme? I'm sorry that I don't know your history, can you give me some ideas what's going on with you?

Edited August 31, 2010 by NewBeginnings

[lyme_mom]

Lyme is the fastest growing infectious disease, ten times more common than HIV. It is easy to get and hard to treat. Tests are not very reliable for Lyme so it remains a clinical diagnosis. Lyme and confections (like bartonella, babesia) can cause pandas like symptoms. What I dont understand is how they know whether a person has an auto immune problem or simply an active infection like Lyme that will go away with treatment. I read posts that said that Madeline Cunningham says that a Pandas score can be caused by Lyme. If this is true it makes it even more critical for all kids with pandas to be evaluated for lyme by a Lyme specialist in case a Lyme treatment is the key to getting well.

[EmersonAilidh]

NewBeginnings - I DO have P.A.N.D.A.S. My symptoms started before I had ever even seen a tick (making sure to spell it with a k so that tick & tic don't get confused, haha). Motor tics, compulsions, & anxiety started at four years old. I was bitten by a tick in the fifth grade, which means that I was either ten or eleven (honestly don't remember), & my symptoms EXPLODED in the sixth grade. Completely nonfunctional. Placed in the Special Ed room at times. Just absolute H###. I've had two negative strep cultures in my entire life, even though I am tested every single time I see the doctor by now. Always high in GABHs, specifically, & exacerbations can be linked to strep on the rare occasion that we actually know when I'm infected. I do continue to feel absolutely horrible even when not infected though. I've always just brushed this off as over a decade of untreated antibody assault on my brain taking its toll.

 

I saw my first ever P.A.N.D.A.S. specialist about two weeks ago & had blood drawn the Friday before this one just past. This doctor was absolutely great, & he let me see all that I was being tested for. I was having my antiDnase-B & ASO titers run, I was being tested for Latent Lyme Disease (is this the same as Tertiary???), Mycoplasma infection, & having my cholesterol, iron (I'm ridiculously anemic), & a few other routine things checked. When the three day mark came & went we figured that no news was good news, but when a week passed we decided to call them today. His nurse said that he hadn't called us back yet because my bloodwork had come back "extremely abnormal" & he had been trying to get in touch with an infectious disease specialist who could help me better than he could. When we asked what this was all about, she told us that she couldn't say & that when we talked to my doctor he would tell us what was going on.

I've been told that Mycoplasma can also be treated by ID specialists, but I'm looking into Lyme right now because A) I just don't know as much about it as I would like to & My respiratory system is probably the one thing that I've never had a problem with, so Mycoplasma seems a bit odd. Yes, I realize that Mycoplasma can occur without respiratory complications & yes, I also assure that my body is most definitely not afraid of "odd", but I'm just trying to prepare myself in case this does happen to be Lyme. It would be weird if my symptom explosion just so happened to coincide with a tick bite.

[EmersonAilidh]

By the way - Lyme test came back positive. But all fourteen bands of the western blot were negative. Can someone please explain what that means?

 

__________________________________

Edit:

 

I looked it up a little bit. But I'm still really confused. From what I've seen more often than not the Lyme test is negative & then the bands are positive? & with us P.A.N.D.A.S. kids.. Aren't our antibodies already just totally messed up? Can I really trust a test relying on antibody response? (From what I've read. Correct me if I'm wrong here, because I am totally ignorant on this subject).

Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?

Edited August 31, 2010 by EmersonAilidh

[NewBeginnings]

Hi there,

 

I'm a little confused that your Lyme test came back positive but all bands on Western Blot were negative.

 

You wrote: "Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?"

 

What Dr is completely brushing off Lyme? I'm not sure what you mean by one negative test even though there was already a positive?

[EmersonAilidh]

Hi there,

 

I'm a little confused that your Lyme test came back positive but all bands on Western Blot were negative.

 

You wrote: "Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?"

 

What Dr is completely brushing off Lyme? I'm not sure what you mean by one negative test even though there was already a positive?

 

THAT'S EXACTLY WHAT I SAID. I have never been more confused about test results..

He called my Mom, not me, but she took notes. He said that my bloodwork came back perfectly positive for Lyme. But when he sent it off for the Western Blot, all "fourteen bands" were negative. My question is.. If I had a positive Lyme test. Shouldn't that just be it??

[NewBeginnings]

I'm wondering if they ran an ELISA test which came back positive and then they ran the Western Blot as a follow up, which is common.

 

 

 

 

 

 

 

Hi there,

 

I'm a little confused that your Lyme test came back positive but all bands on Western Blot were negative.

 

You wrote: "Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?"

 

What Dr is completely brushing off Lyme? I'm not sure what you mean by one negative test even though there was already a positive?

 

THAT'S EXACTLY WHAT I SAID. I have never been more confused about test results..

He called my Mom, not me, but she took notes. He said that my bloodwork came back perfectly positive for Lyme. But when he sent it off for the Western Blot, all "fourteen bands" were negative. My question is.. If I had a positive Lyme test. Shouldn't that just be it??

[EmersonAilidh]

I'm wondering if they ran an ELISA test which came back positive and then they ran the Western Blot as a follow up, which is common.

 

 

 

 

 

 

 

Hi there,

 

I'm a little confused that your Lyme test came back positive but all bands on Western Blot were negative.

 

You wrote: "Also, from what I've read Lyme doesn't typically like to hang out in the blood. If the only time I've ever been bitten by a tick was a whole five years ago, is my doctor right for completely brushing Lyme off after this one negative test, even though there was already a positive?"

 

What Dr is completely brushing off Lyme? I'm not sure what you mean by one negative test even though there was already a positive?

 

THAT'S EXACTLY WHAT I SAID. I have never been more confused about test results..

He called my Mom, not me, but she took notes. He said that my bloodwork came back perfectly positive for Lyme. But when he sent it off for the Western Blot, all "fourteen bands" were negative. My question is.. If I had a positive Lyme test. Shouldn't that just be it??

 

If they did do that.. What would that mean?

[NewBeginnings]

You would really need to go see a Lyme Literate Medical Dr. = LLMD.

 

Ask your Dr to fax you copies of all of your labs.

[PacificMama]

Emerson,

 

Please contact the Texas Lyme Disease Association:

http://www.txlda.org/index.htm

 

They will help you sort through this, and help you find a doctor who can appropriately test and examine you.

 

fyi... There are support organizations in nearly every state... simply google the name of your state, along with "lyme disease association".

 

Good luck.

Mary

[EmersonAilidh]

NewBeginnings - Thank you so much for everything!!! I am going to ask him to when I call him tomorrow. & I'm going to see if someone on here can recommend an LLMD that they know is good so that I'm not wasting my time!

 

PacificMama - Thank you for the link! I'll show it to my Mom & we'll see which ones are in network. Do you have kids with Lyme?

 

 

 

 

 

 

By the way, the nurse on the phone said that the first test was a "Lyme A B Screen" & that the results were 1.16 H? I have absolutely no Earthly idea what this means. They talked to my Mom & she wrote it down, so it might not even be right since the nurse that I talked to before they called my Mom flatout told me that she didn't know how to read bloodwork & my Mom could have written it down wrong.

[lyme_mom]

NewBeginnings - Thank you so much for everything!!! I am going to ask him to when I call him tomorrow. & I'm going to see if someone on here can recommend an LLMD that they know is good so that I'm not wasting my time!

 

PacificMama - Thank you for the link! I'll show it to my Mom & we'll see which ones are in network. Do you have kids with Lyme?

 

 

 

 

 

 

By the way, the nurse on the phone said that the first test was a "Lyme A B Screen" & that the results were 1.16 H? I have absolutely no Earthly idea what this means. They talked to my Mom & she wrote it down, so it might not even be right since the nurse that I talked to before they called my Mom flatout told me that she didn't know how to read bloodwork & my Mom could have written it down wrong.

I remember from my son's ELISA lyme test that anything over .9 something is positive for lyme. I think the AB screen is the same test. It is not easy to get a positive result for lyme from an ELISA test even when you have lyme so it something to be taken very seriously when it is positive. I would assume you are positive until a lyme doctor tells you differently.

[mama2alex]

Emerson,

 

You can goo to the ILADS website - http://www.ilads.org/contact/contact_ilads.html - and fill in your info and ask them for ILADS-trained docs in your area of Texas. I did this earlier for a mom in the UK, and they got back to me within 20 minutes with the web site of a practice in the UK.

[EmersonAilidh]

The Fast Reply thing went away so I can't remember who said what. Excuse the lack of organization here, haha.

 

That's what I thought! Okay. I am so glad that I'm not crazy. I was just thinking "All of the false negatives that I read about.. & you're just going to assume that I had a false positive & not pursue it any further?"

Detective EmersonAilidh, on the case.

Are Igenex tests the same as CDC tests? Oh God. I have a whole new disease lingo to learn. So not looking forward to this, hah.

 

& also, can someone please explain what Lyme is?! How does this bacteria cause all of these problems? Is it like P.A.N.D.A.S. with the stupid antibodies, does the bacteria just get in my brain & muscles & wreak havoc, or is it a combination of both or what? I have no idea what's going on. :/

 

_______________________________________

Edit:

 

Also, could it make a difference that an infectious disease specialist, not an LLMD, did the Western Blot testing? Or does it matter who did it? Why do they allow a test with a 60% false negative rate to be viewed as diagnostic.. But they won't give long term antibiotics to sick children.

Medical world, you confuse me so.

Edited September 1, 2010 by EmersonAilidh