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Dr who said I was neg now says I have been exposed but....

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Posted 6/18/2015 3:48 PM (GMT 0)
Okay last Thursday I got my results from Igenex lab and I posted results here on forum because doc called and said it was neg. The feedback I got here was positive and that is what I came up with too. So Friday I called office back and said I think you made a mistake, please review. We 've had several discussions about it and they will not call Igenex, so today they said I have been exposed but do not need treatment. All my symptoms over the last 6 years are and still today are classic LD. I told the nurse I would find someone to treat me.

WB IGM
31.39.41,83-89 IND
Posted 6/18/2015 4:14 PM (GMT 0)
Wow... One reason i avoid doctors like the plague.
Posted 6/18/2015 4:31 PM (GMT 0)
~Riverbel

If you have not done so yet...please start a new thread "Looking for LLMD ...name your general area" Then make sure that your email is enabled on this forum... because we are not allowed to give doctors names in a post.

It is important to get an ILADS trained LLMD because they are specifically trained to handle this.
Posted 6/18/2015 4:37 PM (GMT 0)
I am at a Wifi location... and some posts won't go thru... so i am piecing it up a bit...

Others will chime in soon and be able to give you info about there own experience with herbs...if you decide to go that route...

Mainstream doctors are terrified of losing there liscense... because of the political nightmare with this thing... so they "act dumb"... there are so many stories of doctors losing there practice ... for helping Lyme patients... its a dern shame!

Oh... be sure to enable your e-mail on this forum...if you want LLMD info...we try to protect the LLMD's...so we do not post there names on the site.
Posted 6/18/2015 4:39 PM (GMT 0)
Ok i said something twice... i cannot edit...it will kick me off again...ugh!
Posted 6/18/2015 4:59 PM (GMT 0)
It's unfortunate but we have all fired many doctors. They are not God and they are not infallible. I'm sure the doctor wasn't happy to be questioned.

Good doctors will say up front that they make mistakes and don't know everything. My Rheumatologist tells me what my options are and to go research them and let him know if I want to try anything new. It's up to me to decide if benefits outweigh the side effects.

We just had a couple of very heated discussions about Lyme. I just wanted a signature for the Ingenex order. Eventually, he agreed but told me he wouldn't be able to treat me for Lyme. I said I don't expect you to. I would never jeopardize his license by asking him to treat me. We've been together for almost 12 years and I really like him. But he can't be expected to treat something out of his specialty.

I did get him thinking though. He said I read something new about a test for Lyme. I asked him if it might be that there is a test that reports on more bands than the CDC requires. He said that could be it, but I'm sure he went back to find the paper and this will change how he treats Fibromyalgia in the future.

It's unfortunate that your doctor was willing to learn new things. It's best to move on and find someone who will treat you appropriately.

Also, this forum is awesome and has the best resources I've ever seen. Many of the members don't or can't use antibiotics. They know how to handle it from start the finish and are always willing to share information.

I'm waiting on my test results, but conversations with some of the more experienced member led to the conclusion that I would be clinically diagnosed with Lyme. For the first time is 35 years all the pieces fit together. Every single weird symptom has been experienced by someone else on this forum.

Good Luck, Kim
Posted 6/18/2015 5:00 PM (GMT 0)
Also, go to Ilads.org and put in your address for LLMD's close to you. I might also suggest contacting a local support group to see who they use.

Most people in here will have similar stories to yours, mine included. Doctors just don't want to treat this disease.

When you call, inquire about insurance and upfront costs - it can get pricey.
Posted 6/18/2015 5:32 PM (GMT 0)
Riverbel

31,39,41 were all positive (had a + sign next to them) right?

I have the Igenex paper in front of me:

"IgM Western Blot is considered positive if two or more of the double starred bands are present: 23-25, 31, 34, 41, and 83-93

CDC - if 2 out of 23-25, 39, and 41 are positive.

Doesn't your Igenex test result sheet say on it
Igenex IgM RESULT POSITIVE
CDC/NYS RESULT POSITIVE

If the above is correct, I'm not understanding how the Dr. can negate it?
Posted 6/18/2015 6:18 PM (GMT 0)
Yes + sign beside it. I pointed that out to the nurse since the doctor didn't talk to me. She just said that I had been exposed but no treatment is needed and this is after 3 different conversations now. I figured I was just talking to the wall so said thank you and hung up.
Posted 6/18/2015 6:30 PM (GMT 0)
I had the same EXACT results except the 41 had two plus signs the rest IND, and my LLMD said i had lyme thats BS find another doctor and DONT give up
Posted 6/18/2015 6:41 PM (GMT 0)
Riverbel - besides the + beside each band...don't you have the words Igenex IgM RESULT POSITIVE
......and underneath that doesn't it say: CDC/NYS RESULT POSITIVE

There isn't any interpretation necessary by your Dr. - the 'words' POSITIVE should be on the test paper.


No matter what, you need a LLMD anyway to treat you....so we can help you with that....

Don't worry, once you get a LLMD, you will feel better...he/she won't deny you have lyme disease.
Posted 6/18/2015 6:51 PM (GMT 0)
Riverbel,

I agree that the doctors are scared to treat Lyme. I had a similar experience. I could go into a lot of detail. Bottom line, my PCP was going to give me a month of doxycycline, but he weasled out of it after getting scared when he consulted a specialist.

Then, he did not want anything to do with Lyme. From that point forward, he wanted me to see a rheumatologist. And of course, the rheumatologist thought it was anything but Lyme even though it was the only thing that showed on my tests.

I kept spinning wheels until I got in to see an ILADS trained Lyme Literate doctor who diagnosed me and got me started on treatment.
That is the best way to go. Keep fighting! We can help you find an LLMD if you would like.
Posted 6/18/2015 6:54 PM (GMT 0)
Yes IFA said Equivocal, and Igenex IGM result Positive, CDC/NYS Results Positive

31+, 39++,41++,83-93 IND

I feel like I want to write her a letter! My Sed rate has been over 100 and now down to 40, my CRP has been 95.1, now down to 4.1 but still well over normal ranges. Been dx with Lupus and PMR, But I don't need treatment, I feel like reporting her to some board, but who's?

Traveler gave me a name of a doctor last Friday out of state I will try and contact.
Posted 6/18/2015 6:58 PM (GMT 0)
Riverbel - I'm not surprised you were diagnosed with LUPUS and PMR. Interesting - LUPUS is diagnosed by symptoms and a positive ANA usually. They are eager to treat you with steroids....for that, but over and over again won't consider Lyme disease...when we test positive for LYME specific antibiodies.
PMR - I believe there is not test to diagnose that either....the diagnosis is based on your response to steroid treatment.
Oh, what? You will treat PMR with steroids....without a test that indicates you have it?

I am so frustrated with the double standard...and these are Medical Professionals, who are smarter than that....burying their heads in the sand.

Okay -rant is over.
Posted 6/18/2015 7:10 PM (GMT 0)
Riverbel, which my Igenex test I was CDC negative and I had the highest positive bands on IgG, the LLMD that turns out to not be LLMD to me I've been exposed. My Labcorp test came back positive CDC, it then had to be reported to the State.
This doctor your spoke saw/spoke to doesn't make any sense!!!!
What state are you in, if closest enough to the one in Texas I'll email his name and number, he is hard to get into! I would jump up and down and throw a toddler fit! Haha
Apparently this doctor doesn't want to treat you!
I am so sorry that this is such an uphill battle for us all!

Blessings,

Iheartx
Posted 6/18/2015 7:32 PM (GMT 0)
The LLMD that I am offering to share info on is ILAD's trained, I haven't seen him yet, end of July, but some folks in my county go to him and LOVE LOVE LOVE him.

Iheartx
Posted 6/18/2015 7:42 PM (GMT 0)
thanks, yes I am close to Texas, but I have a winter home in Florida so I got a LLMD there. I will go there in Aug and will try and see him. In meantime, I am going to be taking herbs.

Thanks for all the responses, it made me feel better!
Posted 6/18/2015 7:50 PM (GMT 0)
What you experienced is very common. A huge percent of doctors don't believe that chronic Lyme disease exists. Their not protecting themselves from lawsuits, they truly don't believe that Lyme is valid.

My internist said the exact same thing even though I emailed him a picture of the initial rash, prior to the bullseye. I also had a CDC positive test.

It's not possible to be "exposed" to Lyme. It's not contagious. That's an ignorant statement. Don't waste any energy on the doctor's ignorance.
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