bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I'd like to hear other people's experience of managing adrenal reactions to lyme through the use of cortef.
Before I was diagnosed with lyme my adrenals were so shot that I could not maintain blood pressure in a standing position. (I've had lyme most of my life and I'm 42.)
I was put on a low dose of cortef (20 mg) two years ago. I found that I still could not function enough to pay attention and drive safely unless I took about 35 mg (doctor approved increase.)
I have to be careful about everything I do, and hate that I dare not be in a dangerous situation alone.
I didn't dare get general anesthesia for a recent tooth removal, and ended up having to self-medicate
an adrenal crisis with tremmors and a near black out, while in the dentist chair. What's more, its no big deal. I'm used to it.
When I was pregnant and before taking cortef, I collapsed on the sidewalk, unfortunately in front of a bar at 10am, and couldn't get up.
I was so skinny that of course people passing by just called me disgusting, and wouldn't help, despite my pleas.
Now I'm down to 20mg occasionally when I feel really well.
My struggle is about how much to take when I herx. My gut tells me to take enough cortef to
relieve adrenal symptoms, even back up to 35 or 40mg. My frustration and fear tells me not to take the stuff at all.
So, please don't just tell me how dangerous steroids are. I'm aware that it's equally as dangerous to take high doses (over the 40mg a day bioavailable amounts) as it is to have very low levels.
My body tells me that if I don't take it at all right now, I'll be bedridden, sleepless, have no job, no life, no ability whatsoever to care for my kids, and my immune system will be unable to function.
My most reliable low cortisol symptom is sandy eyes, like its sleepy time.
My other most reliable low cortisol symptom is when I find myself half way through a chocolate chip cookie without even realizing I opened the bag, while reaching for a cup of coffee.
I notice that a good third of lyme symptoms also show up on adrenal fatigue symptom chart.
I think it is impossible to know if many lyme symptoms are directly adrenal related, or if most people with adrenal fatigue are fighting vector-borne illness.
So the question is when dealing with a herx, what to do? My preference is to avoid a herx with good detox, but that doesn't always work.
My inclination is to take whatever amount I need to on a flutctuating daily basis to relieve adrenal symptoms.
If I do, it helps me stay on a healthy diet, and relieves most of my neuro symptoms immediately.
Within fifteen minutes I go from being a total space cadet glued to the computer or couch, to being a mommy who can make eye contact, fix dinner, and find the bandaids.
People who have experience with cortef, what do you think? Do you raise your cortef during a herx, and if so, how much.
bejoy
-------------------- 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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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Hi,
Just been told to try cortef by my LLMD for low adrenal function. But, I am only supposed to take 2.5 per day, so that is a LOT less than what you are on. I am interested to see if anyone responds to this now its at the top again.
My LLMD said Hydrocortisone is NOT the bad steroids that we need to avoid, it is different kind.
I am curious though why you would stop the Cortef because of a herx?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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My llmd wanted me to take cortef for my adrenal fatigue as well but I was too afraid to start it and opted to first try a few other things
Plus it was enough to get me to take the heparin which I am now on.
So I can't offer experience but really appreciate your post.
You've been on it two years with not so much trouble??? Not so much side effects??? When does your doc say you can go off it??
My doc wanted me on it for two years.
Course your body never lies so you know what's best for you.
I'm currently sticking with Starbucks in the morning, it's a good laxative too. But that doesn't mean if down the road I am still unable to funciton, as you mention...
I do not work and really get exhausted....
I may eventually try it. But I need to go slow, one thing at a time for me.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I have what my LLMD originally called "profound dysautonomia." That is the reason I could barely sit up for 30 minutes without becoming short of breath and extremely fatigued.
The first thing he treated me for was dysautonomia. Cortef was not a part of that protocol, nor of any I have seen for this disorder.
I have done a lot of research on it and even attended a support group for those with it and never heard Cortef mentioned as part of a solution for the problem.
I have used Cortef for treatment of Adrenal Fatigue, but not at doses as high as yours.
I am curious. Do you take the 35 mg all at once, or spaced out across the day?
Have you been tested for cortisol levels? If so, what type of test was used? I think all this would help us better understand your problem.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Lymediva...
I hope you return to this post. I am not able to read the other posts.
But, I am like you. I can not sit upright for the most part longer than 30 minutes.
What have you done to help?
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Painted Turtle,
Love the starbucks excuse...er recommendation.
Someone told me they have an organic late or something that is lyme friendly.
What do you get?
Can't afford it daily, but it would be a nice treat now and then.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Here's a little more info on my situation:
I had my cortisol levels tested, and they were very low.
In addition, I had a simple blood pressure test. You lay down for ten minutes and get your blood pressure taken.
Then you stand up and get your blood pressure taken several times over the course of few minutes. (I think this is similar to the tilt table test.)
When you stand up your blood pressure is supposed to go up to help pump the blood up to your head.
Mine just dropped, and kept dropping until the doctor told me to sit down so I wouldn't pass out. He wanted to know how I was still standing.
Cortisol was prescribed at 20 mg a day. I was supposed to take it as follows:
My doctor says I can take more as needed, up to 40 mg a day, especially in case of crisis, like a car accident or surgery, or a bad flu.
I find that when I am doing well I only need 20mg a day, and even forget to take it. When I am herxing bad, I may need as much as 35 to stay on my feet and put dinner on the table.
I often put 25 mg in a pill bottle, and break them in to little pieces spaced throughout the day, then use a little less or a little more as symptoms shift.
For the last couple of days I only need 20 a day for regular activity. I have started to lift weights, and take an extra 2.5 before exercising, to keep my blood pressure up.
I've decided to go ahead and use the cortef (now on generic hydrocortizone) as much as needed. It makes me feel well, allows me to function, keeps my head clear, and allows me to keep my kids safe. That can't be bad for my health and immune system.
However, I am comitted to doing as many other things as possible to reduce my need for the medication, like using herbs and supplements that reduce inflammation.
Case in point: I need less cortisol if I take lots of ibuprophen.
I hope to get off it completely once I get rid of lyme and co-infections, but I'm resigned to staying on it for life, if it means I get to really live rather than just survive.
I believe that once the profound impact of all these infections clears out, my adrenals are going to be able to do most or all of their job on their own.
Caffiene is a big time no no with cortisol. You are supposed to support your adrenals, not get them all fired up and make them work harder.
I admit that I drink two half cups a day, and hit the chocolate pretty hard sometimes. But I tend not to if I keep my cortisol levels steady.
I looked up dysautonomia. It looks very similar to addison's disease and hypoadrenia. It makes me wonder...
Thanks for the support, questions, ideas.
-------------------- 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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***That can't be bad for my health and immune system.***
Doesn't it lower your immune system?? I've been weaning myself off of it after taking 15 mg a day for at least 3 yrs.
I now take 5mg a day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Cortef is not hard in the immune system. It is not the same as synthetic steroids, like prednisone. I just read that today, but don't recall where.
Kam, for my orthostatic intolerance I take Florinef (fludrocortisone), also not the same as the "bad" steroids, along with midodrine and inderal. It takes time to find the right balance.
I know my LLMD is hoping I will improve to the point I don't need to be on as many meds as I currently am on. However, I am at this point feeling worse than I was six months ago.
I am in the process of changing meds, hitting Babs now, along with Lyme. Before I was treating Bart and Lyme. Levaquin really hit me hard. I will start on Mepron after my trips for the summer are completed.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
My understanding is that levels of cortisol (aka: cortisone, cortizone, hydrocortizone, cortef) either too high or too low will depress the immune system. It is a delicate balance.
The body needs cortisone to survive. It is the stress hormone that allows the body to deal with infection, crisis, inflammation, emotional stress, etc. Without other hormones you get sick. Without cortisol, you drop, end of story.
It is naturally occuring in the body. We should be making around 40 mg a day in the adrenals naturally.
Since it is a bioidentical hormone, it is much safer and easier on the body than other synthetic steroids.
My understanding also is that the adrenals will get used to not producing cortisol on their own when you take supplements, and it can take a looooong time to wean yourself off.
Lymetoo, I'm glad you have been able to decrease your dosage!
I found that my need for cortisol decreased dramatically after acupuncture for kidney/adrenal, but came back up after a week anyway, due to undiagnosed lyme.
-------------------- 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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Someone told me they have an organic late or something that is lyme friendly.
What do you get?
Can't afford it daily, but it would be a nice treat now and then.
I know......I know....
It's the last thing I've got left, I love. Is that sad or what? Just seems no other way to get moving in the morning. It's true! I know it's bad but I am just not ready for the cortef yet and I can't give up my coffee yet no matter what.
I recently was feeling very poorly you know....bartonella like....
And all I could say to myself is so long as theres lots of coffe in heaven, so long as there's lots of coffee in heaven....
Anyway, don't mean to stray from the CORTEF. Kam, I get different kinds from Target and brew it myself...but I don't want to be a bad influence!
Hopefully, I'll be able to shift from the coffee at some point.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Yes, I believe that cortef can cause weight gain if your levels are too high. HIgh levels can also cause some anxiety and sleeplessness. Levels that high may also depress the immune system.
People also tend to gain weight if their levels are too low, because they can tend to binge eat carbos to compensate for low cortisol.
-------------------- 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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posted
. Do a lymenet search for ( NMH ) lots of info on dysautonomia .
I have this as well, Severe dizziness, Fainting, Trips to the ER., Bedridden for a year, Housebound for 4 years.
My testing results so far
Pos. Lyme, Igenex Pos. lyme, Mayo Clinic Pos. Tilt table test Abnormal Brain stem response. Low, Renin. Low, Aldosterone. Low Citrate, (Very low). Low sodium. Low Vit D. High Ammonia. Had 3 surgeries, not related, with no problems. Not on any meds. until next week. IV. Rocephin, Tindamax.
posted
I am so pleased that Bejoy has brought this up because I am like her and have to take a steroid to have any quality of life. I used to take 2.5mg Prednisolone = 10 mg Cortef but recently my adrenals have taken a nose dive and I have had to double up to 5mg Pred = 20mg Cortef.
Since going on the higher dose my migraines have greatly improved and I have lost the persistant neck and shoulder pain.
I have been on Stephen Buhner's herbal lyme protocol for a month and have definitely needed the extra steroid because otherwise I was so dizzy on waking every morning and my blood sugar was dropping all the time. I felt dreadful.
Since being on the higher dose of steroid at last there is energy in my legs most of the time. I have just had a 2-day herx when all I could do was rest but it has now passed.
Some of us for various reasons (mine is a pituitary problem I believe) need the steroid just to bring our cortisol levels back to normal and I fail to see how this can in any way be a problem. Obviously its different if one takes excess cortisol but for those of us with severely weak adrenals we are only putting back what "normal" people would have anyway.
Finally I wanted to say when I looked at the signs and symptoms of Addisons disease I have 45 out of 65.
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