Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I went to see an Infectious Disease Dr and an Internist. My LLMD is not sure if this is still lyme, and if it is, I need IV, and here in Canada, an Infectious Disease Dr needs to give it.
So, the appts went well. I am being tested for a couple parasites, as I was sick from travelling years ago. I have done MANY herbal parasite cleanses, nothing. I am still on antibiotics, but not going well, maybe I need IV, or who knows. I am still sick from light, and many other things. BRAIN bad,
I am also being tested for other things. The infectious Disease Dr said it did not sound like a classic case of lyme, something like this, and did not want to just give IV for lyme until he was sure.
I am getting many many tests done by the Internist. I wanted to see one sooner, but my OLD GP wanted me to see a psychiatrist.
So, I am getting this test done called...
VMA Catecholamines test. and free 24 hour cortisol test.
Has anyone had these done? The VMA Catecholamines test scares me, because it sounds like me, and hope it is not.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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bettyg
Unregistered
posted
hi trish, your link caused this to go superwide, will you use the tinyurl please? thanks.
Also if you get a SUPER WIDE post, go to the BOTTOM of the screen. Look to the left hand side and chose PRINTER FRIENDLY VIEW on the same line as HOP TO ______ section ...medical or general, etc. Carol in PA passed this along to me. I use it daily now
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
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posted
VMA catecholamine test done on a 24 hr collection of urine is used to diagnose a phaeochromocytoma which is a rare type of adrenal tumour that releases adrenalin.
Well I dug that up from my memory but I am sure that you would find more info if you use a search engine. Chiz
Posts: 67 | From UK | Registered: Oct 2006
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posted
Hi, I had the test done twice before my lyme diagnosis. I would have sudden periods of anxietya and tachycarida, some lasting hours others days.
The tests were normal. It was the lyme causing the fast heart rate and anxiety. And since treatment these periods have resolved.
Posts: 628 | From the south | Registered: Dec 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
For all it's worth, I too had this test run during my bouts of my "unknown lyme disease" and they were still trying to figure out what was going wrong.
For me, the test was positive and so I was sent to a Boston Hospital for three different kinds of scans.
They were not all done at the same time but they had me believing I had a Pheochromocytoma for over a year with all this testing, which delayed my Lyme results.
In any case, all three of my scans found nothing but the Pheo expert I was seeing basically said that you could not prove a negative with the scans.
I continued to get sicker and sicker and finally got an LLMD. So do I really have a pheochromocytoma or did the Lyme disease mess up my hormones and make the tests read positive?
Hard to say, but I do hope you will report back to us on this since this is a subject true and dear to my heart.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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One of my problems was/is 'Catecholamine Secretion Syndrome' at least that is what my Rheumy called it. My catecholamines will jump up there and I get flushed big time. Then my pulse and BP will shoot up.
Funny thing is.. it is so variable. I tested positive twice by plasma and negative once by plasma and then negative 24 hour urine.
I have had all sorts of scans and they can never find anything. But he did scare the heck out of me making me think it was a pheochromocytoma.
My Endo couldn't find it either. Yippeee!
I guess it is just one of those things that make you go Hmmmmmm?
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I have the flushing and catecholamine release every evening, never in the morning. I have to take an extra dose of blood pressure medicine to handle it. My doctor says it is due to dysregulation of my H-P-A axis. Lyme can do that.
Before knowing I had Lyme, I was sent to many specialists and put through FIVE of the VMA urine tests for pheochromocytoma, FOUR 5HIAA tests for a rare cancer that causes catecholamine release and flushing (carcinoid cancer), and TWO blood tests for neuroendocrine tumors (Chromagrannin A). I also had the 24 hr. urine for cortisol for Cushings Disease done once, and a serum cortisol and challenge cortisol for Addison's Disease once.
None of the specialists and "experts" I was sent to ever even mentioned the word Lyme. It was other patients, diagnosed with FMS like I was, who eventually convinced me to be tested, after a long time and a lot of persuasion.
Those cancers and other disorders are rare and Lyme is not, so I would guess the odds are in favor of it being Lyme.
Carcinoids can be hard to find however, since they are often the size of a grain of rice. I was told it is not the tumor that kills, but the catecholamines, which eventually destroy the valves on the right side of the heart.
Pheochromocytomas are also very small, but are usually on the adrenal glands. If they are somewhere else, they can be very hard to find, but they need to be removed, even though they are usually not malignant, since they cause such dangerously high blood pressure.
There are nuclear medicine tests using isotopes that are attracted to chromograffin cells that can help to locate carcinoids.
If, by some chance, you do have one of those problems, be aware that both Cushings and Addisons can be treated with great success, Pheochromocytoma tumors are benign 95% of the time, and Carcinoid cancer can often be cured if it's caught before it spreads to the liver.
Best wishes and please keep us posted,
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
I have also been tested for Cushing's several times during the years starting back in 1990. Everything seems to resolve on it's own only to resurface again months or years later.
I am almost betting it is the Lyme and my LLMD thinks so, also.
Another real nifty thing that happens is that my testosterone will go off the charts on occasion. It scared my Endo when it did that and he said the only time he has ever seen it that high was with ovarian cancer.
Ummm.. nope.. I already went through that scare and no longer have ovaries. Then the next time he tests.. back to low normal.
Such an odd disease.
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I saw the Internist and the only thing that came back positive was...
high cortisol, which he then went on to do the Dexamethasone suppression test, this was negative. So he said no MRI for adrenals or Pituitary, for tumours.
I heard some on here had high cortisol.
So far nothing else has come back positive. Maybe it is only the tick infections.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
Thanks for the update. Good to hear it was negative. I have also had high cortisol... and then low.
I had a 24 hour saliva test done and it shows that mine is low in the am and high in the evening.
I did have CTs and MRIs on the adrenals and the pituitary and they were all negative so we are assuming it is the Lyme and Company unless something else shows up later.
I won't even mention what my kidneys and thyroid are doing
-------------------- ~Ro~
Don't wait for someone to take you under their wing. Find a good wing and climb up underneath it~ Frank C. Bucaro Posts: 80 | From Desert Southwest | Registered: Nov 2006
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