cactus
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posted
Can Addison's Disease develop secondary to Lyme?
Many of us suffer from adrenal fatigue, so I suspect there is a connection.
Any experience here?
Thanks, cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Lauralyme
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Great question up for input
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Keebler
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Yes. I did. Or maybe it was first, who knows?
I traveled across the country to the only lyme doctor I could find who accepted Medicare. Among all the tests he ran were many endocrine labs (not exactly an ILADS member LLMD but far more LL than any ID doctor - he's the lyme neurotoxin expert ).
But, even with all the tests that show Addison's - since I am overweight, the tests were discounted by my hometown doctor who is quite understandable of my severe sensory dysfunctions but cannot guide me at all regarding any of this.
He said he knew of no endocrinologist whom he thought could meet my special needs. He also warned me of that steroid challenge test that most endocrinologists would do. Things such as that put me into major seizure mode. And, of course, even one "test" shot of dextramethasone could have horrible and long-lasting effects with lyme.
Most Addison's patients are thin - but not all and not always. For those who know about adrenal dysfunction with lyme, weight gain is no news at all - even with a careful, healthful diet.
So, I've not found any treatment exactly - and the typical steroids are not going to work with a set of infections as TBD. I was concerned that the doctor who dx me said I needed to be on four different kinds of steroids but he thought I'd have to live with chronic lyme the rest of my life and did not believe in long-term treatment.
I've been trying to do what I can with adaptogens such as Ashwagandha, Siberian Ginseng, Rhodiola, etc.
Ultimately, treating infections is key. Still attention to adrenal function can literally save a life. Addison's can be fatal, especially if someone is easily overwhelmed with stimuli.
It is best if a LLMD could guide treatment - better for a LL endocrinologist. However, a doctor who is not LL - and expertly so - can do much harm for a patient who is dual dx with lyme and Addison's. Hopefully, you'll find the doctor you need.
In the meantime, Amazon has many good books on adaptogens.
---------------
PubMed, too, has many abstracts (you can search by "adaptogens" or by the supplement names I mentioned above).
posted
I know of some people with. Low Aldosterone,Low Renin, Low Sodium and Low Citrate. Cortisol is often normal. I think this is behind all the dizziness,fainting, low blood pressure, and disautonomias. NMH is so common with lyme . A Tilt table test would be a good test to have done. Some LLMDs have found a connection with the Hypothalamus, Pituitary, Adrenal glands.
Posts: 789 | From CT, | Registered: Jun 2006
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cactus
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Thanks so much, Keebler and Al, for sharing your experience on this.
Your input is appreciated.
This looks like it will be a challenge.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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bejoy
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Yes, I was diagnosed with Addison's, but I got better as I knocked back infection. Now on just 5mg Cortef a day.
I'm not sure if the success is due to lyme treatment, or to some of the alternatives I have used to treat the adrenals.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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cactus
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Thanks for responding, Bejoy.
Reading your story has given me a lot of hope.
I have been in Lyme treatment for almost 4 years.
POTS symptoms started about a year ago, then came the adrenal fatigue diagnosis.
Now it's progressed to Addison's.
It's hard to tell which symptoms are coming from which condition, and it is confusing.
I am completely exhausted.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
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I have repeatedly begged my GP- and my ND - for cortef but no luck. (No LLMD in my life but I do the best I can on my own)
I have used all the adrenal supplements and they do clearly help but I am still literally feeling like 2 minutes from death from exhaustion all the time.
So, for those who might want to explore safe Cortef use, Singleton does outline that in his book, "The Lyme Disease Solution"
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I have tried adrenal glandulars many times over the years but they wire me so as to trigger seizures. I can barely take these, even at low dose, for more than 2 days.
cactus
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posted
Connie, I hope your daughter sees quick improvement. Will you keep us posted?
I have been on 10 mg Cortef for some time - and saw immediate improvement at the time I started it. (until now)
Hopefully that bodes well for her.
A recent bout with severe illness has left me almost narcoleptic, the exhaustion is so extreme.
LLMD upped the cortef to 90 mg for 3 days, which helped, but then when I resumed 10 mg daily - back down I went.
So now we are doing:
15 mg Cortef in the am Adding Florinef in the am 5 mg Cortef in the afternoon Plus potassium
Will be adjusting from there.
Did your daughter's PCP mention that she should wear a medic alert bracelet? I just learned that yesterday.
And Keebler - I can only imagine how you must feel without the support of your PCP and ND.
I am not familiar with the supplements, but hope that you will find an adequate combo/dose.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
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posted
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Today, this article appears at the CFS health site, ProHealth.
It is a very long article and a bit bunched together. I have in now in my file with better spacing if anyone with vision problems wants me to email it to them. It is far too long to reprint here.
Underactive Adrenal Gland - Stresses and Problems with the Body's 'Gear Box'
by Dr. Sarah Myhill, MD* March 10, 2009
Exceprst:
. . .
The adrenal gland is responsible for the body's hormonal response to stress.
It produces adrenaline, which stimulates the instant stress hormone response (fight or flight reaction). It also produces cortisol and DHEA, which create the short- and long-term stress hormone responses.
. . .
In Addison's disease there is complete failure of the adrenal gland not because of chronic stress but because of autoimmunity.
This is a life threatening disorder and the patient is severely ill. The main clinical symptom is severe postural hypotension [aka POTS or dizziness when rising to an upright position, diagnosed via a Tilt Table Test] and chronic hypoglycemia.
Addison's disease is tested for by a short synacthen test in which cortisol levels are measured before and after an adrenal gland stimulant ACTH [also known as the short or rapid ACTH test].
Many patients with CFS are given this test, which is found to be normal resulting in the patient being told their adrenal gland is fine and no action is required.
The problem with this test is it only shows where the adrenal gland is completely non-functioning - it does not diagnose partial adrenal failure or adrenal stress, and no measurements of DHEA are made. This makes it potentially misleading.
Treatment
The idea with treatment with cortisol and with DHEA [supplementation] is to stay within physiological ranges - up to, but not more than, normal amounts. By doing this there are no side effects in the short or long term.
Many doctors and patients recoil at the prospect of taking steroid hormones. Remember, all the side effects of steroid hormones are created by the dose. Using physiological as opposed to pharmacological doses avoids all these problems.
A normal adrenal gland produces about 10-50mgs of DHEA daily and 20-25mgs of hydrocortisone daily. Steroid side effects would appear after a few weeks of 100mgs a day or a few months at 50mgs a day.)
DHEA is available over the counter in the U.S., where the FDA has classified it as a food supplement up to a daily dose of 25mgs....
I start my patients on 12.5mgs (for small people) and 25mgs (for larger people) of DHEA a day, taken in the morning. I like to recheck a single DHEA after 3 months to make sure I am staying within physiological ranges and because a few patients need 50mg.
Cortisol again needs to be used in sub-physiological doses - i.e., up to, but not more than 10mgs a day. (Please note that the usual steroid most often used is prednisolone. 5mgs of prednisolone is equivalent to 20mgs of hydrocortisone). Both these are prescription only drugs.
. . . .
- Full article at link above or go through www.prohealth.com and search Myhill. She has many good articles and she also has a great web site of her own.
cactus
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posted
Thought I would give an update for anyone who may be concerned about Addison's and adrenal function.
This is the second day I've been on Florinef, and with an increased dose of Cortef.
Can already see and feel a difference.
Wow.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
Honored Contributor (25K+ posts)
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posted
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Thanks, cactus.
This is clearly something I've not worked out so I really appreciate your keeping us up to day with your progress.
Question: does Cortef make you at all "wired" - I may try to broach this subject with my MD or ND again but if it might "wire" me I can't stand the chance since my seizure threshold is so low anyway and anything that is energizing can tip the switch.
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