Symptoms are similar to hypoadrenia, or low cortisol levels. If you have this (and many lymies do) it can be treated with Cortef.
Posted by kpa (Member # 12079) on :
Really helpful! Thanks a lot.
Diet changes- increasing proteins, reducing high glycemic carbs, and avoiding carb only snacks without any protien (as in just an apple!) has made a big difference in a week.
kpa
Posted by cactus (Member # 7347) on :
Bejoy, you've had good results with cortef, if I remember correctly, so maybe you can shed light on this for me...
Isn't cortef a steroid? I don't take any steroids, but am curious about cortef since I have POTS, and probable adrenal issues.
Did it have any negative impact on you, or did you only notice improvements when taking it?
Thanks, and my apologies if you've already posted this info elsewhere - Cactus
Posted by Geneal (Member # 10375) on :
I used to take cortef for NMH, but switched to florinef when POTS also kicked in.
I have issues of low blood sugar now, whereas I didn't before.
I have to treat myself like a person with borderline hypoglycemia.
Frequent snacks (healthy, low sugar, low carb) many times a day.
Whether I want it or not.
If I wait until I feel hungry, then I feel really, really sick.
The dose that cortef and/or florinef is given is very low.
It is not a steroid like prednisone.
I can't imagine not taking it and I have never worried that it has slowed any progress down.
Hugs,
Geneal
Posted by cactus (Member # 7347) on :
Thanks, Geneal, it's good to hear that you are doing well with it.
I think it may be helpful for me as well, but wanted to check about the steroid issue.
I, too, must have frequent snacks (lots of protein, too) or all the symptoms get worse. There must be a connection.
It would be wonderful to find a way to lessen the POTS symptoms...
Cactus
Posted by NJLyme82 (Member # 15683) on :
Thats an interesting concept about not waiting to get hungry.
When I get hungry my body pretty much shuts down.
I get tired, dizzy, shaky and disoriented.
Maybe eating before this happens is the key. Seems obvious enough.
Posted by NJLyme82 (Member # 15683) on :
By the way what is POTS?
Is this a coinfection?
Posted by cactus (Member # 7347) on :
POTS - postural orthostatic tachycardia syndrome
Meaning when upright, one's heart rate increases by at least 30. Can cause dizziness (among many other symptoms) and makes it very hard to stand for long.
On the eating issue - my LLMD has me eating every 2 hours, small protein snacks at least. I think it helps support the adrenals.
Posted by bejoy (Member # 11129) on :
In answer to the Cortef question:
Cortef is technically a steroid, called Cortisol, which is a natural hormone produced in the adrenals.
If the adrenals andd/or the pituitary is affected by lyme (a common problem) the the adrenals may not produce enough cortisol.
Levels too low or too high can depress the immune system. The body needs about 40 mg a day, produced naturally, in a healthy person. Low levels will also give you low blood pressure and make you fail the tilt table test.
A person fighting infection needs a great deal more, and may be producing much less. Low levels can sometimes mimic hypoglycemia, but a glucose tolerance test will come up negative.
Low blood sugar from delaying a meal will stress the adrenals and make cortisol levels drop, contributing to feelings of disorientation and fatigue.
The best way to diagnose low cortisol, in my opinion, is with a saliva test.
The highest dose usually prescribed by a doctor is 20mg per day.
Steroids you have to watch out for are hydrocortisone injections (the same chemical as Cortef, but at a very high dose) and prednisone, or other steroids prescribed for rheumatoid arthritis, specifically for the purpose of depressing the immune system against autoimmune disorders.
I don't know much about Florinef, but many here do.
I do know that a Candida diet and a hypoglycemia diet are quite similar, so you can't go wrong with higher protein, and low sugar and carbs, and more frequent snacks while treating lyme.
Posted by cactus (Member # 7347) on :
Thank you, Bejoy! Excellent explanation.
You have just answered many of my (unasked) questions, and I am so grateful...
kpa, I didn't mean to hijack your thread and hopefully this all plays into your original question about a connection between hypoglycemia and POTS.
Posted by Tif (Member # 12701) on :
I also deal with this AND have hypoadrenalism (they are related a lot of the time and common in us lymies). I have unsuccessfully tried bio-identical steroids.
I got Dr. Wilson's book (per my LLMD's referral)on adrenal fatigue and am taking the recommended doses of B vitamins, Vitamin C, salt, and overall diet with the exception of whole grains because I am on a gluten free diet. I eat about every 3 hours.
The biggest issue I am having right now is that my cortisol level is out of rhythm by about 12 hours, which means my highest is early evening, and it should be early morning.
Eating the salt is VERY important with low adrenals.........sea salt is better than iodized and Celtic sea salt is better than regular sea salt.
My adrenals are getting better following this protocol, but I am considering re-trying the steroids since so many do so well.
LLMD thinks part of the reason I had such a bad time before on them is because my rhythm is off by 12 hours; we didn't know this until I did the testing.
Posted by kpa (Member # 12079) on :
I am getting so much out of this discussion!
So, how much salt are you taking?
kpa
Posted by amk33 (Member # 13206) on :
My LLMD knows that lyme patients have a messed up endocrine system, but she said she doesn't have the knowledge to properly treat it. And, she says that there are not LL endocrinologists around here.
What type of doctors are prescribing Cortef? I have hypoglycemia which is induced by diet as well as stress. I also am very sensitive to epinephrine (in novocaine). I really think that I have an adrenal problem.
I have the book about adrenal fatigue, and the symptoms really sound like some of mine. But, I can't find anyone to test/treat.
Any suggestions?
Posted by Piegirl (Member # 14786) on :
Naturopathic doctors know alot about adrenal fatigue and ways to test and treat.
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