The Lyme Disease Thread

[CarlaB]

Thanks Patti.

[lizard00]

Hi everyone!

So a quick update: ALL of my bloodwork came back normal; I don't have copies yet, but I'll get them soon. I have been feeling pretty good these past couple of weeks, so maybe it's just getting over the initial damage by gluten. I am going to another GI in a few weeks, so we'll see what comes of that. But until then, I am going to continue to monitor changes in how I feel and go from there. I'm kind of sick of being tested at the moment, and since I'm feeling much better, I'm taking a brief rest. I haven't ruled anything out, but I'm kind of stepping back from everything for a bit to see what comes to be. Thanks to all of you for your help and information.

I have been reading the posts and saw the new info about the review of the panel of DRs who say chronic lyme is nonexistant. What an amazing victory!!!

Here is an article that was in our paper today. I'm not very good at linking things, so I'll give it a shot. Hope it works!

Open Original Shared Link

[CarlaB]

Lizard, I hope you do get copies of your results ..... my doctor told me my blood work was normal, too, when it was clearly a positive test.

Plus, the CDC standards for a positive test for their tracking purposes is much more strict than diagnostic standards should be ... though for reasons you already know due to the political climate surrounding Lyme, most doctors use those standards that the CDC never intended to be used for diagnostic purposes. Lyme docs will treat you if you have a positive Lyme specific band along with symptoms ..... well, even symptoms alone since it's a clinical diagnosis, but a Lyme specific band is confirmation of the diagnosis.

My daughter was treated with a negative test .... her diagnosis was confirmed by her reaction to the meds.

I'm glad you're feeling better lately!

Thanks for the link.

[Ridgewalker]

My mom pulled a tick off Ezra today. Yeeeargh!

[AndreaB]

My mom pulled a tick off Ezra today. Yeeeargh!

Uh-oh!

What a handsome little boy he is.

[susieg-1]

Lizard, I hope you do get copies of your results ..... my doctor told me my blood work was normal, too, when it was clearly a positive test.

Plus, the CDC standards for a positive test for their tracking purposes is much more strict than diagnostic standards should be ... though for reasons you already know due to the political climate surrounding Lyme, most doctors use those standards that the CDC never intended to be used for diagnostic purposes. Lyme docs will treat you if you have a positive Lyme specific band along with symptoms ..... well, even symptoms alone since it's a clinical diagnosis, but a Lyme specific band is confirmation of the diagnosis.

My daughter was treated with a negative test .... her diagnosis was confirmed by her reaction to the meds.

I'm glad you're feeling better lately!

Thanks for the link.

Carla, Laurie

I have a signed IGeneX lab slip !!!!! I will do bloodwork tomarrow and get FedX to ship to CA!!! Will post results for your input in a couple weeks Yahooooooooooo!!!!!!

[truthsearcher]

Sarah,

Sorry about Ezra. Definetly get treatment right away to erradicate it quickly. It can be done if treated very promptly.

Susie, Yeah! You got the lab slip signed! Wow good news! Keep us posted! If you don't hear in two weeks give your Dr. a call because if they thing it's negative they may never call you. And make sure you get copies, both the IgG and IgM.

Take Care

[CarlaB]

My mom pulled a tick off Ezra today. Yeeeargh!

Sarah,

Sorry about Ezra. Definetly get treatment right away to erradicate it quickly. It can be done if treated very promptly.

That is what I'd do!!!

Susie, YAY!! Keep us posted!

[Ridgewalker]

Seriously?! The tick was just on him yesterday-- there's no way to tell if the tick was even a carrier unless he shows symptoms, right?

I mean... everyone I know has been bitten by ticks, literally. We're in a bad area for them. But that doesn't mean they all have Lyme, right?

I am keeping an eye on him, though, of course, for any rash, fever etc...

[CarlaB]

No, they don't all have Lyme. But after what I've experienced, I would rather do antibiotics than wait till they get sick .... but everyone has to do what they think is right.

[Rachel--24]

Seriously?! The tick was just on him yesterday-- there's no way to tell if the tick was even a carrier unless he shows symptoms, right?

I mean... everyone I know has been bitten by ticks, literally. We're in a bad area for them. But that doesn't mean they all have Lyme, right?

I know its too late now but you can actually keep the tick and send it off to be tested. That would tell you whether or not the tick is a carrier.

It might take years for symptoms to develop. Lyme can live in the body without causing symptoms. Its an opportunistic bug....the immune system may be able to keep it in check for the time being but when the immune system is under stress the Lyme can become more of an issue.

I dont know that I would treat in the absence of symptoms but you should definately be aware that those symptoms can appear years from now. Many times people dont make the connection because the tick bite is long forgotten.

[fedora]

I contacted IgeneX. Oh my...the test they recommended is $450. It is the complete panel. Is this what you recommend?

I have been experimenting with food. I may be corn intolerant I took it out and then brought it back in. I hurt more now than when I was not eatin it. I will test it more. I am off soy, and nightshads( but messed up there so have to go longer without them) I figured I should check what I can on my own.

[CarlaB]

Just get the two Western Blots and it will be $190.

[fedora]

Hey, the two western blots are the IgM and IgG right?

$190 is much better.

[CarlaB]

Hey, the two western blots are the IgM and IgG right?

$190 is much better.

yes

[mftnchn]

Hi, does anyone have any information about what CBC blood tests might show in lyme or the co-infections?

I have slightly elevated monocytes (could be chronic inflammation, parasites, viral or bacterial infection is what I found).

Also have in increase is large sized RBC (might be anemia) and large sized platelets and platelet distribution width (might indicate increased active platelet release).

Just wondering if this might be helpful to know what is active.

Also I had this blood draw the morning of my bad herx/flare day, so I am especially curious.

Sherry

[CarlaB]

Sorry, Sherry, I don't know.

[dlp252]

Sherry, I don't know either, but the last two years my lymphocytes were very low (lower than the lowest number in the range), and this year my neutrophils were high. Last year I did some searching for low lymphocytes and came up with the same thing you did...inflamation, virus, etc. So, I don't know if it's connected to the lyme, but I have an intestinal thing going on now, lol.

[confusedks]

I have no idea either Sherry. Sorry. I don't think CBC's show anything as far as Lyme...hence people going for so long undiagnosed.

[dollamasgetceliac?]

I have a question, I hope someone can help. I have been very ill in the last 5 years, It started out with Migraines every day, Neuropathy and then shoulder and pains all over. Then it turned into severe abdominal pain. Have been hospitalized etc.. developed all these new allergies to everything.

Tested positive for Celiac disease recently but my doctor is not sure. I have been on gluten-free diet and feel a lot better.

The question I have is that I seem to have many of the symptoms mentioned above, I had asked a Neurologist to test me for Lyme disease and he said I do not have the symptoms. I recently asked my Doctor he is a regular practitioner and he too said no reason to believe you have Lyme.

I do have a tick bite and was exposed to ticks throughout my life.

Why would he refuse the test? Is it expensive?

Another question about exposure to Mercury how do they test that and who tests it? And who treats Lyme is it a Neurologist?

[CarlaB]

Oh, difficult questions, and it's late. I'll look back tomorrow and be more detailed if no one else gets back to you ....

Lyme is a politically charged battle within the medical field so not many doctors at all, except those who specialize in Lyme only, will test for it properly or treat it. That is why your docs won't test you .... they are either ignorant, or don't want to treat it.

If you go to lymenet (.org), you will find a lot of info on this. Also www.ilads.org. At Lymenet you can also find doctors in your area on the message board.

There is a lot of info buried in this thread, too.

I'll check back tomorrow.

[susieg-1]

Oh, difficult questions, and it's late. I'll look back tomorrow and be more detailed if no one else gets back to you ....

Lyme is a politically charged battle within the medical field so not many doctors at all, except those who specialize in Lyme only, will test for it properly or treat it. That is why your docs won't test you .... they are either ignorant, or don't want to treat it.

If you go to lymenet (.org), you will find a lot of info on this. Also www.ilads.org. At Lymenet you can also find doctors in your area on the message board.

There is a lot of info buried in this thread, too.

I'll check back tomorrow.

On that note, My Dr. office is insisting that my Lyme test results from IGeneX labs have not yet arrived although IGeneX tells me they were sent one week ago. I know snail mail can be slow especially around holidays but, IGeneX offered to fax results when I called two days ago but needed my Dr to sign faxed form first saying OK to having lab results faxed. So far nothing!!! This is the typical runaround that you will get regarding Lyme disease with most Dr.s. I signed on with a new medical practice and am changing primary care physician and I have no intention of discussing Lyme with new Dr. So my advice is to order the IgG and IgM western blot test kit from IGeneX lab (their website has 800 # to call) the cost is 190 bucks plus any draw fees. If you can get one of your Dr.'s to sign the lab slip you will be ahead of the game as that is probably the most help a conventional Dr will give you on the topic of Lyme. Then you need to get a copy of the results from IGeneX and post results here for help understanding the report. CarlaB is the resident expert and can give you great advice Keep us posted

[susieg-1]

Oh, difficult questions, and it's late. I'll look back tomorrow and be more detailed if no one else gets back to you ....

Lyme is a politically charged battle within the medical field so not many doctors at all, except those who specialize in Lyme only, will test for it properly or treat it. That is why your docs won't test you .... they are either ignorant, or don't want to treat it.

If you go to lymenet (.org), you will find a lot of info on this. Also www.ilads.org. At Lymenet you can also find doctors in your area on the message board.

There is a lot of info buried in this thread, too.

I'll check back tomorrow.

I had to post as I got a message on my machine this afternoon that IGeneX lab results are in and Dr. that signed lab slip wants me to call and make an appt to see her. This is the same Dr that said that there is no Lyme in NY!! I can only assume that she would not want me to make appt if test came back negative. Now I am freaking out waiting to call her office in the AM. I also changed my PCP the other day with my insurance company and won't be covered for the visit now but have not yet told her that I am changing to another practice. I was going to get copy of results and give her form at same time to transfer records to new Dr. Now What?? (rhetorical ?)

[CarlaB]

Great Susie, when is your appt?

The scenario you described about your trouble getting your results is SO typical. My doctor told me mine were negative when they were positive. The thing is, if they admit that you have it, they have to ethically treat you for it. So most docs don't want to test or admit you have it when they do.

[dlp252]

I was going to get copy of results and give her form at same time to transfer records to new Dr. Now What?? (rhetorical ?)

Still make sure you get a copy! Sometimes even when you have a positive result they will say it is negative, so definitely get a copy of the reports. There should be one for IgM and one for IgG.