tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
After two years of treating lyme, you tend to want to make sure no one in your family goes through what you have.
My sister that lives in a different state is humoring me after what her PCP called "an infected tick bite" and given a week of Doxy.... and has gone to a LLMD that has come pretty highly recommended by others here in her state.
After two appointments, they have still not run an Igenex test and when she asked at the second appointment, they said "not yet", but have continued running lots of blood work, stool samples, spit tests, want an MRI...etc, etc, etc.
So far, she has been told she has a high DHEA and D-Dimer, so ofcourse she came home and started looking on the web and is concerned what this may mean.
Is this anything other lyme patients have encountered when seeing an LLMD, anyone have either of these and any advice to give my sister regarding them, other than to keep pushing for that Igenex test?
I did do a search here on D-Dimer and only had one hit that was only in passing and although DHEA is mentioned more and I know even in my case, mine was LOW before being diagnosed with lyme....I was wondering what those two being high means and what the Lyme doctor is looking for BEFORE running the Igenex.
Thanks for any help or guidance.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Anyone?
Any clue why this line of testing was even run before doing Igenex?
I want her to stick around with the LLMD until she can get the test she went there for, but after two appointments....I don't know what to be telling her about this line of testing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
Your asking why so many tests before the good Lyme test?
Well since most of us here "officially" can't prove we even have the disease due to its high testing standards. ie: you gotta have Borrelia pouring out your ears before these tests can detect it.
The Dr' has to show "REASONABLE" efforts to diagnose the illness...and not just jumpright to the Lyme western blot.
The chances are, you will be (-) negative for Lyme when you do take the IgeneX test. However, you will have some (+) antibodies against specific parts of teh Lyme bacteria.
Dr's are worried they will get in trouble for treating Lyme when the patient has no (+) tests for it.
So, they start to pile up as much circumstantial evidence as they can to show why they are treating at all.
They can't gain enough evidence in just a couple visits. They're just protecting themselves.
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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Maybe the next appointment will be when the western blot test will be set-up.
Sorry. Thats why so many of us are upset.
It takes so much time and money.
Unfortunately, to the skeptic, this is also the reason why other doc's say LLMD's are "taking you for a ride". More appointments= more $
Posts: 269 | From Valencia, CA | Registered: Aug 2007
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posted
I can only tell you that my son has seen a great LLMD and she DID run Igenex tests at the same time as blood work including the d-dimer for him.
We were lucky that he was fairly asymptomatic after a brief abx treatment because she would not treat him for the infections until that d-dimer was down. Used Boluoke to get it down(took a few months) and now he is being treated for babs and lyme.
d-dimer elevation can set you up(in her opinion) for an unexpected stroke or heart attack.
BTW, my son is only in his 20's and is very athletic otherwise she would have been very worried.
I believe the docs need to know the state of the body as well as the infections they are dealing with before starting treatment unless absolutely non-functioning.
Posts: 132 | From SE Pa | Registered: May 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
DHEAS/DHEA is the "counter" to cortisol. It triggers the immune system while cortisol dampens it.
IMO...a high DHEAS level means she is fighting.
LOW DHEAS and high cortisol can indicate the beginning of adrenal exhaustion.
d dimer is used to rule out blood clots.
In lyme, there is a hypercoagulation problem.
Find my post re: Condrosulf.
I HIGHLY recommend that Rx for reasons I explained and linked.
OTC...she should consider lauricidin.
He can treat her for a hormonal and neurotransmitter imbalances...treating for "lyme" is another thing...
It takes awhile to build up enough antibodies...which then show up on the testing...hopefully.
Have her increase her Mg intake so that when he does do the testing, the antibodies will be there/show up.
And then ask why cholesterol lowering drugs (arb!) are not Rx'd given the FACT that Bb follows the cholesterol pathway (among others).
The point is...stop Bb from building its cell walls.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I do know my sister talked about being put on some meds by the Lyme doctor that I had never heard of and not related to lyme before the actual lyme test was run, so I need to believe they are pointing her in the right direction.
She goes back for the third appointment on Nov. 6th, so hopefully they will get to the lyme test eventually, but hey, perhaps they will stumble on more, so thank you for all the great information.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Cathy,
I've had hypercoagulation tests through three different labs (although not the Hemex Lab tests considered by many as the gold standard), and got three different set of results.
On one set, I did have a high d-dimer. One doctor is concerned (he is more of a chronic fatigue syndrome/Lyme doctor than LLMD, although my LLMDs have seen the results too).
A hematologist told me to tell a surgeon before I have any surgery because of a possible increased risk of blood clot. I believe all of this, like you have already seen in a previous post, is related to Lyme hypercoagulation.
I am supposed to try lumbrokinase/Serrapeptase or similar natural fibrin-thinning supplements, but as usual, am having problems tolerating even a grain of anything.
Many bacterial and viral infections cause the blood to create fibrin/fibrinogen. I've read both that it is a mechanism for the pathogen to hide, and also it's the body's attempt to wall off the pathogen to protect the body.
Hope you're doing better. I'll talk to you soon. I went to the LDA/ILADS conference but have not yet recovered from it.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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