Topic: Has Addison's Disease been one of the big misdiagnosis "biggies" of Lyme?
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Wondering this because I know someone who was diagnosed with Addison's disease & it sounds so much like Lyme,or possibly caused by Lyme. But she was told her Lyme test was "negative". And we all know that mainstream docs know nothing about the inaccuracy of the tests.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'd be suspicious too.
I think on the DVD, "Under Our Skin", there was a doc (think it was Burrascano) who said the only way to know for sure if what you're looking at is lyme or the disease in question, is to treat for lyme. If the patient gets better, then it was lyme.
I personally think that every auto immune disease either originated from lyme bacteria or is actually lyme imitating the disease (chicken or the egg?).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- * Yes, Borrelia b. can CAUSE Addison's. So can other chronic "stealth" infections.
* If infection is present, typical Addison's treatment (steroids) can cause death by infection flares.
[Two exceptions to the "no steroids" rule for lyme:
1. Low dose hydrocortisone - Cortef - can be safely used by lyme patients, but that may not be enough for Addison's;
2. When required to save a life, as with Addison's, steroids can be used along WITH antibiotics. Best if the antibiotics are started 48 hours prior to steroid. Best guided by a skilled LL expert.]
* If infection is present, treating infection may help reverse adrenal failure - if caused by said infection and if the damage has not been permanent.
* However, the state of Addison's (adrenal failure) MUST be treated, somehow, as soon as possible because
* Addison's can be fatal if untreated.
* Treatment for any infection would not work until the adrenals have proper support.
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After years of untreated lyme, babesia, and a ehrlichia, I was dx with Addison's by a LLMD (though not ILADS) out of state with Addison's. But my local GP would have none of that because of my being overweight.
While usually, those with Addison's are thin, not always.
I could not get even low-dose Cortef prescribed.
But I knew I could not do the 4 different kinds of steroids (suggested by the out of state doctor) with no lyme treatment (no access in my state and funds ran out) . . . I did the best I could with certain support herbs for addison's and for lyme, and other coinfections.
But - I have failed on all counts. Disabled since '93 but totally homebound now for 3 years, just trying to get through each hour, trying to learn all I can on a shoestring to save my life.
I am getting no better. Part of that is that funds are just not there for some of the things that were working for a while but mostly, professional guidance is not there and my case is very complex.
I am NOT playing with dramatics here, not pleading . . . not wanting sympathy. [I share my details with you because of what I've learned: Addison's can be fatal if left untreated.]
Now, there is a LL ND near me and I've managed two consults, at least. And I have more study to zero in one how to maximize my energy and pennies.
I just want to say that for your friend, Addison's MUST be addressed. MUST. Caveats below.
The kind of exhaustion that comes from adrenal failure is just so devastating. The inability to handle any stress is beyond embarrassing, it's life-threatening (as, for me, startle seizures are figured in, too).
Rarely do I share my own situation but, in this case, it may help your friend understand the severity of this. I don't want my situation to be repeated for lack of access when they may still have some resources.
I truly hope your friend can get excellent LL medical assessment not just for tick-borne but also for other stealth infections such as Cpn and mycoplasma.
Some of my study notes are in the thread below.
=======================================
[I reworked the top portion of this post and now realize that I repeat a lot below but there are few things that need to stay. I just don't have the cognitive energy to edit this. Being concise is not my forte.)
---
In the case of adrenal failure (i.e. Addison's), stress can certainly kill, so it's imperative to understand this is a medical issue, not an emotional or psychological one).
With Addison's any stress can be the fatal load if the body can't have certain key hormones.
TODAY, that person needs some kind of support. TODAY. And every day.
But the typical high dose steroid treatment can make lyme, (et.al.) much worse, and that could be fatal.
With the failure of the endocrine system as it is in Addison's, the body CANNOT manage without some kinds of precise treatment.
But FIRST, if possible to wait just a bit, before any steroid treatment (other than supportive adrenal supplements or low dose Cortef), they should assessed for lyme and other tick-borne and stealth infections by an ILADS-educated LLMD.
It would be good to find one who is more familiar with endocrine issues & with adrenal support, if possible.
Most are, at least to the degree necessary to sort out diagnoses. And most would have some idea of the endocrine professionals in their area who could work together with them.
If assessed for any such stealth infection, the treatment would be a very careful dance.
================================
Many strong ADRENAL links here, including Wilson's wonderful book with support and life-style "rules" that are also essential:
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First question should be:
Did your acquaintance EVER have a bulls eye rash following possible exposure to ticks or other ectors?
(Of course, we know that "ticks happen" any time of the year, anywhere, really.)
If a bulls eye rash is in their history, they can "pass go" and "collect names of area LLMDs" for a clinical evaluation.
While we all know not everyone gets the bulls eye rash, that is a lotto winner (though, in reverse). -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
Keebler, Thank you for sharing your story. My husband has been treating adrenal fatigue for the past 5 years. We only learned he has Lyme this past summer.
He is basically home-bound. Hasn't been at work since this past Spring. He is seeing an LLMD and we are seeing improvements - though its not big dramatic changes yet.
May God Bless you with an abundance of extra pennies and energies needed for treatment.
Posts: 2257 | From USA | Registered: Aug 2011
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
It's amazing how so many things are linked to Lyme.
Appalling and amazing.....
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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posted
I am one who suffers from adrenal insufficiency and I did not take cortef I would have been dead.
I have had 2 hospitalizations, in crises, and it is beyond scary. After 3 yrs. on cortef and 2.5 ys on abx. I have weaned my cortef from 30 to 20mg. I take mine in divided doses. 10mg wake up, 5 mg 2hrs later and 5 at noon
Posts: 151 | From south east | Registered: May 2010
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