posted
I just wanted to say thank you to each of you for your kind words and support. I feel like
I'm somewhere between a rock and a hard place, or in my part of the world...a glacier and a mountain.
While I understand about the specific bands indicating lyme, I know the doc looks at the "overall picture" that boldly says NEGATIVE.
And that will be what my dear husband sees and hears as well. And I guess I can't blame him. He sees days when I feel so much better and can actually function and then days when I seem to have no brain at all.
Of course he thinks this is all in my head. Sometimes, I wonder myself.
The days when I feel good and can do things normally, I think, why am I wasting everyone's time? I'm just fine. Then the fog and headaches, etc will return and pull the rug out from under my life.
Maybe it is something else, maybe I'm just disappointed because I thought "if" it was lyme, then maybe it was something I could get treatment for.
Something I could get better from. Other things it "could" be might not be so easy. And I have spent so long looking for the answer.
I know I have had epstein barr in the past, and maybe that is causing the positive antibodies? Or the micobacterium avium complex TB that I had in the lymph nodes of my neck. I don't know anymore.
Maybe the internal med doc will have some ideas on the 22nd? Or the neuro doc on Tuesday. I go back to the spine institute tomorrow in Anchorage, so I won't be around a computer for a couple of days.
Thanks for listening and for all your wealth of information. I do appreciate it. I have a high respect for all of you who do suffer from lyme, from what I've read, it's a long, tough road, my thoughts are with all of you.
Any chance you can print out what we wrote in the other thread to show your husband??
Come back often and let us know how you're doing. We care!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Tamera,
I Pm'd you.
I have very high EBV titers as well as CMV and HHV6.
That is not what is causing me to not be able to speak, swallow or causing my dysautonomia problems.
What does YOUR gut say? Not your husbands, not the doctors.
We have all gone through the "maybe it is something" else stage.
I knew before I got diagnosed and know deep down now that it is Tick Borne Diseases
That cause my problems (well and sometimes my husband ).
Please let us know how your doctor's visits went.
Bring with you all the info you can regarding Lyme and see what happens.
You may actually find someone who can think outside the box.
If not, don't dismay. Most of us have been mis-diagnosed at some time or another.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My symptoms came and went for years before they just came and stayed!
My ex was certain I was faking it all to "get back at him" for traveling a lot. We had three active kids at the time.
He still isn't sure I am really ill. I think he believes that I am just pretending all this.
Like I would end a career I loved so I could be in pain and sleep all day! Not to mention the wonderful pay cut that involved. DUH!
For several years I still believed my problems were all due to depression. After all, the doctors told me nothing was wrong.
My therapist didn't believe that though, and she was the one who finally sent me along the right path, although it would still take a few more years for the correct dx.
At least she was right. I was physically ill.
I hope you won't just give up. This will not go away, and the longer you wait for treatment the longer and more difficult it will be to get it under control.
Hang in there. You know we're here for you!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Cobweb
Unregistered
posted
Have you been to an endocrinologist?
Of course they don't treat or diagnose Lyme-but they can diagnose and treat other things that have been thrown out of whack because of it.
I have been treated for Vitamin D deficiency and hypothyroidism. Vitamin D deficiency isn't because of lyme , but I should think people living in Alaska a limited exposure to sun could be vulnerable to it.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Like others here my symptoms were off and on for awhile and then were here to stay and I was stuck in a horrible state and didn't know what was wrong. I was diagnosed with many illnesses. CFIDS, Fibromyalgia, orthostatic hypotension and many more when it was actually lyme, a treatable illness. My health continued to spiral down with no end in sight.
It is criminal that we are forced to suffer, sometimes for years or even decades due to the political interests of a few doctors who run the show. I agree with others. Your results indicate lyme. The controversy over lyme diagnosis and treatment is what is keeping you from getting the care that you need.
I hope to see you back here at some point, getting the help that you need.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Tamara,
My heart sank when I saw your posts here. Not because I wish lyme on you, but because I know that the sooner you know what you are facing, the sooner you can get treatment.
As others have said on the other thread, there are bands that a Lyme specialist would probably question and may even put you on a 30 day trial to "see what happens".
The hardest part for you, I know is your location, since it's so hard to get medical help when you are so far away. Please continue to keep us posted on what happens with the other doctors you have lined up. Finding one that will think outside the box is probably in your best interest.
I've definitely enjoyed getting to know you and do hope you won't totally disappear on us. We do care and want to hear how this works out for you.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Not to mention the wonderful pay cut that involved. DUH!
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