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» LymeNet Flash » Questions and Discussion » Medical Questions » Feeling worse on cortef

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Author Topic: Feeling worse on cortef
improver
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I started taking cortef a few days ago for adrenal fatigue and seem to be feeling even worse????

I am taking 20 mgs total per day, 15 at 7am and 5 at 4pm. My face is burning, I have a constant dull burning headache and my ear ringing got louder, elevated heart rate at times. Oh and I feel as if I'm on the verge of panic???

I hope this isn't lyme getting stronger or something.. Help please....

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fatigued15
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My son's llmd started him on Cortef last year. From what I read I discouraged him to take it. Cortef made him feel terrible. His psych symptoms from Lyme came back. He stopped it after 1 week and was back to himself within a few days.

Hope this helps.

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ByronSBell 2007
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I a taking the same amount of cortef as you. It has neither helped or hurt me... [Frown]
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johnlyme1
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There are other things that support the adrenals too. My homeopathic muscle tests me for the protocal that would help me the most befor going to more radical suppliments.

Take a look at some of the Standard Process suppliments. Desaccated Adrenal support, Liquid Licorice.

I also had a full saliva hormone panel done and it showed Testostrone, DHEA levels very low.

I built up over 4 weeks to the dosing of licorice desaccated adrenal and DHEA and have felt so much better without any major reactions.

Also, if the adrenals are shot in more cases than not the thyroid probably is not up to speed either. Once the adrenal are supported the thyroid should come up to speed. My homeopathic did the iodine test to see how deficent I was. You have a drop of liquid iodine put on a spot on your skin, it should be there for a least 10 hours. If not it means you need more iodine. Iodine supports the thyroid and is a key player in immune system support. I was put on Promoline iodine

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WildCondor
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Why are you taking steroids?
Based on what test and what symptoms?

That's a lot of Cortef and it's not a good idea to use steroids in Lyme unless vital.

Side effects from steroids are too many to list, you should probably lower the dose.

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lymeHerx001
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Dose is WAY TOO HIGH.

I had same thing. Cutting down to 2.5 mg twice daily helped alot.

Though I dont want to take this with caffeine. Defeats the purpose.

Right now Im not taking it cause Im exploring my caffeine addiction.

Thats one of the things that hurts me besides lyme.

An addictive personality.

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ByronSBell 2007
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I thought that cortef helps since it is a hormone that you need... I never heard anything about it hurtingyour immune system, it is supposeto help it when you have all of your hormones in the normal range
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bejoy
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Are you taking your Cortef as prescribed? Is your prescription based on blood or saliva testing, or on your doctor's opinion? I'm curious about your doctor's choice of timing.

I take Cortef regularly for serious adrenal symptoms, but only ever take 15 mg at once if I am in a serious crisis, like a car accident or something. Most people don't need that kind of stress response to get out of bed in the morning.

If I'm having a really hard time, I sometimes take a tablet and a half in the morning. Rarely two, never three. Otherwise, I'd get anxiety and a fast heartrate too!

Sounds to me like your levels are spiking and dropping with a high dose in the am and nothing until pm. I take 5mg once every three to four hours.

Cortisol levels too high or too low can compromise the immune system, and make lyme worse. I am wondering if your protocol is giving you both in the course of a day.

Elevated heartrate and panic could be from high cortisol. I'd suggest talking to your doctor about spacing out your doses. If you still have anxiety and elevated heart rate from it, then I'd definately talk to him/her about reducing the dosage.

20 mg a day is the "usual" dosage. It's not right for everybody.

I agree about checking into supplements to support the adrenals. Look at James R. Wilson's Book, Adrenal Fatigue.

bejoy

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serendipity
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improver,

I felt worse after my first dose of cortef. I started at 2.5 mg. Felt achey, tired, and my heart started racing. We tried increasing the dose gradually to 15 mg, switching to compounded cortef, but I just got worse on it.

Byron,
Cortef does alter the functioning of the immune system as well as blood sugar, both can effect micorobal growth. Some doctors think that within a certain "physiologic range" cortef may be safe and even beneficial.

I declined while on cortef. My doctor and I agreed it would be safer for me in the long run to try other options, a combination of homeopathy, herbs, vitamins, diet, and relaxation techniques.

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ByronSBell 2007
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I am on cortef becuase my cortisol level along with DHEA, testosterone, thyroid, and everything else was WAAAYYYYY out of the normal range, they were close to the almost no hormone production range so I have to take them or I could face death possibly. My LLMD says that hormones should be in the normal to high range and he has ALOT of evidence that backs this up, he knows more about hormones than your typical endocrine doctor...
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Nori
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You are starting your dose to high too soon

Try starting at 2.5 then work up slowly from there. Stopthethyroidmaddness.com has good information on dosing

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Nori

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Health
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I had this happen, I tested positive to high cortisol by an Internist.

I had taken licorice root tea, which is very potent natural cortisol, I drank it as a tea.


I was soooo ill from it, head pain, shaking, and nausea, and body burning.

It did not agree with me, however I have taken it years ago with GREAT success.

Trish

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lymednva
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I take 10 mg in the AM, based on extremely low saliva testing. I'm within normal limits the rest of the day, although at the low end for some of the times.

I have not had any of the symptoms described above. I was recently retested and my AM levels are still too low, so I'm still on the Cortef.

There has been a lot of discussion on this board about the use of Cortef and the consensus has usually been that in low doses it is fine, not like taking steroids, which would be at a much higher dose.

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Lymednva

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Lymetoo
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I take 5mg a day. I used to take 15mg and felt BETTER on Cortef than off.

I wanted to lower the dose to as little as possible and may completely stop eventually.

I agree that maybe you started out too high. Call your dr and tell him how you feel.

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WildCondor
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based on my experience, saliva testing is pretty worthless!

Get a blood fasting cortisol test and compare the results. Mine were totally opposite. Adrenals awful low on saliva tests, and perfect on blood. I took Cortef for 3 years in too high doses based on the salivary cortisol tests (before I knew I had Lyme).

If your blood tests show low cortisol, try boosting your endocrine system naturally. Cortef is a nasty steroid and even in low doses (5 mg) can really cause bad side effects.

You should start at 2.5 mg and go gradually up, and get blood cortisol tests as you go along to make sure the levels are correct. If you have true Addisons Disease you will require prednisone for life and a medic alert tag. You need to see an endocrinologist and be checked for this.

Most likely, your Lyme has weakened your immune system, and its hard work on the adrenals. Once you treat the infection, adrenal function goes back to normal on its own.

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improver
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Wow thanks for all the replies. Sorry I didnt respond sooner I was working. Which is another problem, I am self employed in the construction field and find it very difficult to function alot of the time.

As far as the prescribed cortef, my holistic Doc did a 4 part saliva test and found my am cortisol was very low. He decided to try and help out the adrenals.

I called his office today and he was on vacation. He actually called me from his vacation to make sure I was ok and told me to reduce the dosage to 10 mg in am and 5 in pm.

He has had lyme twice and has defeated it. He thinks my lyme is gone and now the rest of my body just has to come back together. I am also on armour thyroid med 15mg 1 time per day.

I am a young male (30) so the thyroid thing surprises me greatly.....

PS
I felt a little better after the first dose wore off this morning but not so great after the afternoon dose......

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Boomerang
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Hubby recently started DHEA and Testosterone. He is scheduled to start Cortisol and Florinef after two weeks.

Is Cortef the same as Cortisol?

Byron, you see the same LLMD we do...did you have the hormone testing done?

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lymednva
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I have noted a big improvement in my reactions to stress since I have been on Cortef. That is one reason I believe it is helping me.

My adrenals were pretty shot by the time I was finally dx'd. I had been ill over 40 years and had gone through divorce plus some major crises with one of my children. All that contributed to having weak adrenals.

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Lymednva

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Lymetoo
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quote:
Originally posted by Boomerang:


Is Cortef the same as Cortisol?

Yes

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Lymetoo
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quote:
Originally posted by lymednva:
I have noted a big improvement in my reactions to stress since I have been on Cortef. That is one reason I believe it is helping me.

My adrenals were pretty shot by the time I was finally dx'd. I had been ill over 40 years ......... All that contributed to having weak adrenals.

Same here.

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ByronSBell 2007
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quote:
Originally posted by Boomerang:
Hubby recently started DHEA and Testosterone. He is scheduled to start Cortisol and Florinef after two weeks.

Is Cortef the same as Cortisol?

Byron, you see the same LLMD we do...did you have the hormone testing done?

Yes, 24 hour urinalysis... It is more accurate than the blood testing I have heard!
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lymednva
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I had the urinalysis done first, for my doctor (prior to his LLMD days) to prove a point about the rejection of my application for disability retirement. The duck they sent me to said I was a little depressed, but that I could still teach school. [bonk]

My doc wanted to prove that I wasn't depressed, so ran urinalysis to show that my cortisol levels were not elevated as they usually are in depression. They were off the chart low, so he followed up with saliva testing for a clearer picture of when the levels were low.

The state didn't pay a bit of attention to his rebuttal or any of the other three inches thick of info my attorney prepared for them. Luckily for me the attorney stopped charging after the first payment!

Unfortunately, the state never approved my disability retirement, but the county did! Go figure that one out! [Eek!]

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Lymednva

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ByronSBell 2007
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saliva tests vary from lab to lab more so that urinalysis does (again, what I have heard) I NEED to do another hormone test to check to see where they are at now after being on hormones for over 4 months. I can tell my testosterone is working because my muscles are pumping up and facial hair is growing a little faster.
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Boomerang
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Bump for Byron......or anyone about cortef...?

Thanks a bunch.

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improver
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Hi, I was the one who originally posted this thread. I took the advice of my friends here and backed off the cortef. I noticed the new symptoms started to go away as the dosage got lower.

I have since started seeing a new llmd who believes that once the lyme infection is under control the hormone levels should return to normal. Luckily I don't get as fatigued as some.

The adverse effects Iwas having were, heart racing and palps, plus alot of my old lyme symptoms were coming back like chest pains, air hunger, and others. I do believe I started the dose way too high and that was the problem.

I also stopped my low dose thyroid med.

By no means am I suggesting what to do in your situation, just telling you my experience..

Good luck and God bless you [Smile]

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Marz
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I was taking Enzymatic's Adrenal Stress End with adrenal cortex extract and adrenal polypeptide fractions on the recommendation of my LLMD.

It gave me an awful stomach ache, so I quit, but it might work for some people.

I can't remember where I heard about Holy Basil, and have been taking it for about two weeks, and I can tell I'm feeling less fatigued and bounce back from stress a little better.

I also take licorice root.

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