posted
I am beginning to wonder if this might explain my remaining symptoms. Does anyone have this?
One of the things that makes me think I have this is that my skin got soooo dark this summer. Like ridiculous dark. I have all of the other symptoms too.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Also wanted to ask if you went through your LLMD for this or do you go to a duck?
Posts: 845 | From Northeast | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ONLY through a LLMD. Other doctors will not understand the lyme-adrenal connection.
Lyme can CAUSE Addison's and the steroids that are often used to treat Additions can be disaster for someone with lyme.
It must be treated along with lyme, not separate.
However, often treatment for lyme can correct this -- if everything is addressed together.
Regarding diagnosis, be VERY, VERY cautious about any "challenge" test that injects you with steroids. I knew someone who became disabled from that test for six full months (as it made lyme "blossom")
Even if you are in remission regarding lyme, you must be very cautious regarding certain kinds and certain doses of steroids.
IMO, ONLY a LLMD or LL ND can guide you safely. If they cannot, ask them for a referral to a LL endocrinologist. It's just that there are very few of them in the whole country. Very few. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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Cortef (Hydrocortisone, a steroid)? Safe doses for someone with lyme? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Some kinds of Porphyria (a liver & heme condition) can also cause darker skin. Porphyria can also cause a board range of symptoms. Many with lyme can have a secondary porphyria, too.
posted
Thanks for the info Keebler. I don't have any urine discoloration so I don't think it is Porphyria. Do you know if Addison's can correct itself without treating it, once the infections are gone?
Posts: 845 | From Northeast | Registered: May 2011
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lpkayak
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posted
soooo...did john kennedy have lyme?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Have you investigated Adrenal Fatigue?
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Adrenal Fatigue, yes I looked into it. This is how I found the Addison's thing. The dark skin is something I guess that only happens with Addison's. People have said to me this summer "I have never seen anyone as tan as you".
I have always tanned well but not like this. I was black. It was weird.
Posts: 845 | From Northeast | Registered: May 2011
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posted
In addition to the skin darkening, do you have any of the following symptoms?
fatigue loss of appetite gradual weight loss nausea salt cravings low blood pressure which leads to light headedness
If you do, you need to see a doctor asap. Addison's is life threatening. Cortisol is essential to human life.
Posts: 922 | From Philadelphia | Registered: Sep 2012
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philly78
Frequent Contributor (1K+ posts)
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posted
If you really think addison's is a possibility, you need to see an endocrinologist. If s/he is lyme literate then great but imo, addison's needs to be managed by someone other than your LLMD.
If left untreated, addison's can be deadly,especially if you go into crisis.
Low BP and low blood sugar were the reasons I went and got tested for it. That and rapid weight loss. The endo I saw was great. I didn't end up having it though.
Do you have the hyperpigmentation now? What other symptoms?
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- 1. philly78 has a good point about the need for proper assessment and treatment if you do have Addision's. However, if you also have lyme, a regular endocrinologist will likely not know how to treat you without the risk of making lyme worse.
So, it's vital that you have your LLMD coordinate information with ANY endocrinologist you see BEFORE any treatment or challenge test is administered.
It's true, indeed, that Addison's can be fatal if not treated but it also must be treated differently for someone with a chronic stealth infection such as lyme (or other TBD).
2. You say: " I don't have any urine discoloration so I don't think it is Porphyria."
Not all kinds of porphyria cause discolored urine (and some can cause urine of different colors other than the classic purple).
But, even in those, often special tests need to be done to cause that color to "show" so it's important to not assume that just because urine is fine that elevated porphyrins might not be to blame. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I was tested for Addison's by a conventional endocrinologist since I had quite a few symptoms and I don't have it. I guess Lyme can mimic Addison's too.
-------------------- RV Posts: 249 | From Healing in USA | Registered: Mar 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For anyone with ANY Addison's symptoms who did not register on a test for it, ADRENAL SUPPORT is still absolutely, positively essential.
A lot of those tests cannot pick up the kinds of adrenal damage and stress caused by lyme. Adrenal support is actually vital for every one who is dealing with lyme, IMO. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Kennedy had chronic back pain from the injury he incurred in the PT-109 incident. Cortisol was just beginning to be used in the 40's for a host of problems, and JFK used it, even in his presidency. It can be suppressive OR stimulating to the sex drive, and in his case, the latter, and he actually told one of his paramours that his womanizing was influenced by taking it. Back then, it's adrenal suppressing effect was not known, and Kennedy did have Addison's disease, most likely from overuse of exogenous cortisol.
Posts: 60 | From Maine | Registered: Jan 2012
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posted
Skin can be dark do to liver and pancreatic conditions. Do you know your liver function? Have you had an ultrasound of your pancreas?
Posts: 267 | From South | Registered: Oct 2011
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posted
Skin can be dark do to liver and pancreatic conditions. Do you know your liver function? Have you had an ultrasound of your pancreas?
Posts: 267 | From South | Registered: Oct 2011
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posted
I have been through alot of testing regarding my adrenals. If you think you have Addison's then there are several tests that can confirm this. One is the ACTH Stim test where they put an IV in and test your cortisol levels for an hour and see if they are responding to the stress.
Another is the saliva testing at 4 times during the day. If you do have true Addison's then it is for life and will not be reversed even with treatment.
I only had adrenal insufficiency and was on low dose cortef for a while. I don't really think it ever made a difference in how I felt. I still have incredible salt cravings though....
Also when you have skin pigmintation with Addison's it is only in certain areas of your body...not all over like a tan.
Most of us fighting a chronic infection will have some level of adrenal insufficency...at least that is what my doc told me.
Posts: 343 | From North Carolina | Registered: Oct 2008
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posted
Thanks everyone for your responses. I will be talking to my LLMD about my concerns in a couple of weeks.
He wanted me to do the saliva test a while back but I didn't do it because I wouldn't be able to have my daily cup of Joe. I'm down from 4, I know, I know...I'm bad. He gave me the kit and everything.
Lost, my liver function is fine. Test it every month.
Doc, funny about JFK. I guess it wasn't his fault he was such a dog!
Posts: 845 | From Northeast | Registered: May 2011
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