Well, the letter did not work. Hmmmm....oh well, it was worth a shot. I tried.
She thinks the lyme results are "inconclusive" and she does not want to give me antibiotics "unnecessarily" if I don't really need them.
She feels it would be better to wait awhile and retest again when the steriods would be completely out of my system.
In the meanwhile, she is testing for pheochromocytoma (say that 5 times quickly!)
Porphyria, hepatitis C, and hemochromatosis. Ok, I'm a nurse and don't know about 3 out of 4 of these!
I had to come home and look them up! She also put me on a event cardiac (heart) monitor for the next 30 days to record palpitations.
The neuro doc wants another MRI of the cervical spine (the only part that hasn't been done yet!)
And all the docs agree that I should be sent "outside" (which up here in Alaska, means to the lower 48.)
So they are working on a referral to Virginia Mason in Seattle.
So, the adventure continues. Posted by lymednva (Member # 9098) on :
If you're going "outside" go to a LLMD while you're at it! Posted by bettyg (Member # 6147) on :
i agree with lymed. make it a double visit for GOOD LLMDS INVOLVED! for the money you are spending to come down here. best wishes; those weere some hard words. Posted by trueblue (Member # 7348) on :
Though it's not the result we'd hoped for I think it's good she's testing for those things.
I don't know what the first one is but am positive for Hep C, suspect for hemochromatosis and started testing for porphyria but the hemotologist dropped the ball.
It'd be better to know what all you're dealing with in any case.
I'm sorry about the more testing and hurry up and waiting. Seems I find myself there more than not.
Hang in there, kiddo!
I wish they could treat you locally but at least they are willing to say coming down to someone that knows what they are doing, is a start. When a diagnosis is made it sounds like at least one of your docs might be willing to work with someone out of state.
You might want to contact some folks in CA. I know there are LLMDs there. I'm not sure about further north.
Posted by hshbmom (Member # 9478) on :
I wouldn't waste my time on the duck merry-go-round. You may get some incorrect diagoses and treatment. They won't diagnose or treat you for Lyme disease or coinfections...if they do treat you, they'll under treat you. Your time and money are valuable right now.
They probably don't believe Lyme or coinfections exist, so you certainly won't get the needed treatment if you have Lyme disease.
The LLMD can order an MRI if he thinks you need one.
Welcome to the world of Lyme. There are people that are knowledgeabe and care out there, but you'll probably have to travel.
Posted by CaliforniaLyme (Member # 7136) on :
That is GOOD- you SHOULD be tested for those things- they are all in a Differential Diagnosis for Lyme disease!*)!!!!
Be sure to get copies of all test results so if you go to an LLMD you can take them and not spend extra $ on tests already done!*)!! Hope she has ALSO tested you for Ehrlichiosis & Babesiosis!!!
Hope you find out what it is soon- Lyme or TBDs or something else- Best wishes, Sarah
Posted by tdtid (Member # 10276) on :
Tamera,
I know that even the LLMD's want to rule out everything else before giving a clinical diagnosis, so getting all these tests are a good thing.
My only comment is that while I was in my search for what was making me so sick, I was tested for the pheochromocytoma with both various blood work and 24 hour urine and kept testing positive.
So I spent a year of this time going to Boston to be scaned over and over and over, just looking for it. They used so many different contrasts and still never found this tumor.
I was told that they couldn't prove a negative, so that I should be scanned in another year. Hmmmm. Then I tested positive for Rheumotoid Arthritis, but again, the Rheumotologist didn't think that's what it really was.
So I guess all I'm trying to say is that even getting a positive on some of the tests, may still just point you back to this direction, but you are doing all any of us have done in this situation. You need to find out what is making you sick and keep searching.
Don't ever give up and keep us posted.
Cathy
Posted by Cobweb (Member # 10053) on :
At least they recognize you are sick-and it's not "all in your head".
Take Care, Carol
Posted by Michelle M (Member # 7200) on :
Tamera, good for you for trying. And as mentioned, at least they didn't outright insult you. Doctors just refuse to accept Lyme -- they will believe ANY OTHER DIAGNOSIS in the universe first.
Since they don't need to know your entire agenda while you are away in the states, I too agree that you should make an LLMD appointment. I am in far northern California and my LLMD is pretty inexpensive and in fact accepts insurance. I would try VERY hard to get you an appointment if you could make it down (others may pipe up who are more north than me; I'm in Redding/Chico area). Given your history and IGeneX results, I can't imagine you NOT being diagnosed with lyme.
I know you have to play their game but I don't see an endpoint. In other words, their game will never end. Their tests will go on and on and on, they will never admit you have lyme. In the meantime, your health will keep eroding.
This reluctance to approve a simple regimen of doxycycline is nothing short of amazing. If you had teenage acne, fer cryin out loud, they'd write you a scrip in a heartbeat. But they go and act all imperious as if you're asking for morphine or something as soon as you mention the word "lyme." GAAAHHH!!!!
Don't give up. Make a plan!! They are not the only doctors in the world, and when it comes to lyme they are absolutely CLUELESS!!
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