newbie and update

tazbeau

New Member

Joined : Dec 2008

Posts : 6

Posted 1/22/2009 4:02 PM (GMT 0)

not sure if I offended some or all of you when I last wrote, as no one replied or offered me their thoughts. It certainly was not my intention to offend or alienate anyone. I was and still am anxious to see if I can be diagnosed and treated to improve my quality of life. My questions were centered around only having IgM positive tests, but many of the symptoms of Lymes, and not knowing whether "chronic Lymes" really existed.(after much reading Yes, IMHO it does.) Ultimately I went to a infectious disease specialist, who told me that not only do I not have Lymes, I probably have never had it. OK..

well a chance walk by a television showed a lupus rash on some one's hand. The point of the report is that UV light can aggravate certain rashes in certain diseases. the rash looked identical to mine. Did a core skin biopsy, it confirmed I have Lupus. So if this helps any of you.. good and good luck to you all anyway. the only other notable thing that I can think of now is that i have had Raynaud's syndrome for quite a while, I have way below normal white cell counts, and an older spinal MRI(2 years ago) showed abnormal bone marrow.

dorit

Regular Member

Joined : Nov 2008

Posts : 375

Posted 1/22/2009 5:14 PM (GMT 0)

hi tazbeau!

you said that your questions were centered around only having IgM positive tests, but many of the symptoms of Lymes, and not knowing whether "chronic Lymes" really existed;
Many people (including docs) believe in the existence of chronic lyme.
Did you have a Westernblot too? Which lab did the tests ? Where I stay, a positive Igm in Westernblod is seen as kind of "proof that a "real infection" is going on. It's also not impossible that tests come out false.
I too had met a doc who told me I would never have a positiv test for lyme (this was before I was tested and came out positive) he said, he could simply "see" and "feel" it; well he should wear eyeglasses with the next patient, shouldn`t he?! LOL, but not funny anyway.
So I only can encourage you to find a LLMD who checkes out what may be related to lyme, what may be Lupus and eventueally may order additional tests for co-infections. You need some pations too because all around Lyme is somewhat of a detective's work.

Way below normal white cell counts may be related to co- infections too ; I don´t have them but a lot here know a lot about this; maybe someone can tell you more.

My dermatologist told me about Raynaud's syndrome as one of those skin manifestations besides others like neurodermatitis which may be misdiagnosted and could also be ACA which is a late stage Lyme skin manifestation.

I hope you will get better soon and find relief and help with your pain! kind greetings!! dorit

Martha's Vineyard

Veteran Member

Joined : Jul 2008

Posts : 1119

Posted 1/22/2009 5:24 PM (GMT 0)

hey taz,
the only person that can offend everyone in this forum with their comments ...is me...lol
It is just alot to fill you in on all of the BS. Dorit did a good job above. With lyme your Dr.s will go around with all sorts of crazy ideas. MS and lupus are mistaken all the time.
There are some great books posted on this forun that I highly suggest reading. There is so much that you need to know. And it helps to read how so many others that are getting the same run around that you are now.
First, get your blood tested at IGENEX.com
That will take about three weeks at most.
Then get back to me or the forum, and we can help you better by what we know then. Instead of guessing.
Althoug. Lyme patients should be treated for their symptoms alone. Not on weather they could "prove" that they are sick with some tricky blood test.
So get started with the test.
Don't worry that you up set someone on here. That is not the case at all. The fact that you wrote Newbie...lol
Most on this forum are not newbies..and they are really sick. So energy is hard to come by. And everyone is trying to save themselfs and their families.
You need to read about what everyone else is going through on here. There is the same pattern over and over. And you will see yourself in their stories as well.
Best,
Marie

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