ktkdommer
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posted
Is your fatigue caused by dysautonomia? Florinef is often taken for POTS or NCS. Is cardiologist prescribing or LLMD?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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Summer3
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LLMD for some heart symptoms and extreme exhaustion that isn't improving.
nonna05
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Summer , I'm in same spot...I have some Cortef 5mg.. supposed to not be a threat,, It is for extreme exhaustion,fatigue
Try as I may ,,there is no get up and go...I'm having a big day if I get downstairs to couch to watch TV after 6 PM//,,
This is my biggest /wort problem, then weakness, pain, fluish etc...
BUT ,I was made so much worse by regular steroid shots for back and hip pain in 2010.
It concerns me ... DR S say's in his book some people just have to take a small dose, to jump start,,
My adrenals feel flat,..
There is another post in my name on this . somewhere in last 2 weeks
MORE INPUT PLEASE
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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nonna05
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Summer,,by the way ..how do you even run if your that exhausted???
Reading a bit of your blog and saw RUN...
Something must be working......lets hope it kicks in better for you,,,
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Catgirl
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posted
Summer, I used to love the IV glut and glut pushes. Unfortunately, now they make me worse. They make me depressed, and herx too. I am falling asleep in the middle of the day too. I sleep better after I get them though, so there is some benefit (cleans out my bladder lining too). But at what cost?
I am starting to suspect the glut is causing it. I read something on someone's link here about glut pushes or IV glut being bad for people with Fry bug (protomyxzoa). Maybe that's the problem.
I am also taking an oral glut. I think I will try it by stopping that and see if it's the problem. But I took the oral before and didn't feel like this. So maybe it is the fluid or compound with the pushes/IVs.
Or maybe it's just gotten to the point where now I can't take it anymore. Still thinking Fry bug.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nonna05
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Summer ,check the other post and see what was said....
It's so sad that on top of all else we have to be our own doctors from scratch on this illness...Did you see the post about the LLMD who just died. Not even 50 years old and LLMD ,it still got him..
This is so sad
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Steroids will make the lyme worse, so watch out. I've seen people who didn't know they had lyme and were given steroids and rapidly declined.
-------------------- lisa theobald Posts: 111 | From madison wi | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Generally, yes, steroids can make lyme much worse.
However, when taking about LOW dose, physiological doses for adrenal function (Cortef) or Florinef for kidneys to help with low blood pressure drops, those have been safely used by those with lyme.
Still, start with basic adrenal support as that may be all needed, along with addressing infections, heavy metals, of course.
Topic: what do STEROIDS actually do to us? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- Catgirl,
you say "I am falling asleep in the middle of the day too"
aybe your body just REALLY needs that nap (though I can understand if it's a reaction to glutathione that you'd want to adjust that).
It's really important to have a rest period in the afternoon - for anyone but more so for those healing from serious infection such as lyme.
Can you PLAN for a rest period (along with adrenal support and some specifics to help with sleep)? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
"However, when taking about LOW dose, physiological doses for adrenal function (Cortef) or Florinef for kidneys to help with low blood pressure drops, those have been safely used by those with lyme."
No. Often many complain of feeling a lot worse on low dose HC even when taken for a short duration. J
-------------------- jeremy Posts: 71 | From new york city | Registered: Sep 2011
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Keebler
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posted
- Good catch and important point, jer69.
"Safely used" regarding the steroid issue does not necessarily mean that everyone feels just dandy with either. Some can't tolerate either Rx.
Summer,
there are many threads on each in the archives, searching it the subject line is faster.
Keebler
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posted
- Have you read Wilson's book? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Summer3
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posted
No, I haven't read much of anything about adrenal dysfunction yet. The idea of these meds took me off guard so I did some research last night, but I have a lot more to do.
Keebler
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posted
- Wilson's book details many options. It's an essential book, IMO, to read before even considering any adrenal Rx. It's in the library system, too.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nonna05
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posted
Keebler were you saying stick with the adrenal support supps even if trying 5mg of Cortef??
This is scarry for me because of the shots that messed me up so bad,,'
The Dr. said this dose is not anything like that..
Not saying he's wrong..i just want to be careful,yet other support wasn't doing much. If it was then I sure didn't notice it.
Keebler
Honored Contributor (25K+ posts)
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posted
- nonna,
low dose Cortef is NOT the same as steroid shots. Not by a long shot.
Still, not everyone can tolerate Cortef even at low dose.
In Wilson's book, he explains this in the book in great detail. If you have Wilson's book, see page 217-218 and you might also get the other book he recommends:
Jeffries - Safe Uses of Cortisol (1998)
I know you can get the Wilson book from inter-library loan from any U.S. library system.
Reading that would go before trying Rx of Cortef. It's in the adrenal tread above, with other articles, too.
But I thought your doctor said you are not a good candidate for Cortef right now (do I recall that correctly?).
It sounds, though, like you are already trying 5 mg of Cortef. Then follow your doctor's orders about whether or which adrenal support supplements still needed.
The supplements are not exact matches for Cortef. They can still work together but, again, the prescribing doctor (hopefully your LLMD) should be the guide.
I cannot stress enough the importance of reading the articles and books as it's more than just taking this or that. There are so many helpful suggestions for self-care that are absolutely vital.
Unless we also follow the self-care advice, treatment has little chance of helping.
The detail there about supplements and Cortef is also far greater detail than can be posted on any chat board. -
[ 07-13-2012, 04:51 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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WPinVA
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"I cannot stress enough the importance of reading the articles and books as it's more than just taking this or that. There are so many helpful suggestions for self-care that are absolutely vital."
This was absolutely true for me. The combo of supplements plus Wilson's self-care protocol (for example - in bed by 10, eat protein every few hours) helped me so much. I actually think I'm going to go dig the book out and read it again to see if there's anything I missed the first time.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Summer3
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posted
I'm going to order Wilson's book. Thank you for the recommendation. In the meantime, I followed my LLMD's advice and have been taking the 5mg of Cortef and .1 of Florinef. I don't notice much on it yet. I wonder how long it takes to have an effect?
The first day I had EXTREME over the top thirst, but now I'm back to "normal" which is pretty bad lately.
Lymeorsomething
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posted
Yes, we talked a lot about this in the past. The key is with the dose and one of the pioneers in this area was William Mck Jeffries. Check out his book Safe Uses of Cortisol sometime.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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nonna05
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posted
Those that have read Wilson or Jeffries..or take Cortef...
The 5mg is below steroid type dosage, what if it goes over once or at most twice...
Was told ,afterwords that a strong Alkaline drink can increase the potency of medications,,.
Really I don't ask for this jazz, it just comes..Anyway IF ?
IF This were true /or if you know about this ..would the increase cause then a bad effect?
It sounds very iffy, but if 5mg were to have had a 8-10mg dose ,then is it still under the safe zone?/
This is very new to me and I know very little about increasing Alkaline... Just if it did it , was that a safe dose?
I wouldn't ask what seems like such a dumb question had my life not been totally wrecked by steroid shots.. .and the only reason I considered trying the low dose was because the extreme fatigue is over- whelming and totally stops any other day to day activity .
This is very recent and I have know chance of reading info... long, black and white verbage makes me wozzy.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Summer3
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I just thought I'd post an update in case anyone is interested. I'm almost to 2 weeks on cortef/florinef in a very low dose.
I'm just starting to see some slight improvements in energy. I have been able to stay up past 2:30 p.m. without falling asleep this week (although I still get pretty tired in the afternoon). The weakness is confined to a few hours each day rather than the ENTIRE day, but it does come on strong when it appears.
One thing I noticed is that even though my doctor said the florinef should raise my BP, when I've checked it at the store recently, it has been reading "out of range." When I finally got a reading it was 83/60. So I'm assuming it's running on the low side. My normal is 110/60 but I've had 90's/50's before.
Keebler
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posted
- Glad to hear you are adjusting to the Cortef.
Now, maybe you are still being very strict with "aggressive rest" periods. If so, great. My words may still help at times when you may feel like you should speed up the game.
I know I'd be tempted to try to push were my body at all able. So, if that sounds like you:
Rest. I hope during those really low energy times that you are resting. Cortef is not a ticket to go out dancing. You still need to be aggressive about the rest & nap sessions as often as your body needs.
Perserverance is good; pushing is not. They are not the same thing. Cortef cannot cover bounced "energy checks" so be sure to alternate your rest and movement as your body guides you.
For those with NMH (neurally mediated hypotension) for which the Florinef is likely prescribed,
when we are out and about, all the stimuli and pushing of energy can lower our blood pressure more so than if we were in a quiet setting.
Especially for those with any kind of inner / middle ear involvement (as many with lyme have). Inner ear stress can cause the blood pressure to drop like a rock for those with NMH or POTS.
For others, or even for those with NMH or POTS, it could also cause it to go up, though. It's possible to have it go in either direction depending upon the situation.
With noise, lights, smells - and attention grabbers galore in stores - it can be a hit to the system even if you are not aware of it.
Also,some of those meters in stores are not the most accurate. I think it's good to do a reading at certain stores you may frequent, though, to see how you do on that machine over time.
Still, with all the stimuli and how that can clobber those with adrenal dysfunction, when at all possible, stay out of stores - other than small independent ones.
Especially big box stores can set us way back in our progress. IMO, no one belongs in them but if you can find others to do shopping who seem imperious, please let them (or hire them) to do that.
Any major stressors that you can avoid, the better. Even with Cortef, adrenal stress is not going to give you a free pass.
Just because a football player CAN run on an injured ankle if he's got steroids in his body does not mean that it's safe or wise.
Your body's adrenal system is the injured ankle. Take it easy.
Are you still getting some SEA SALT in the early morning and a bit throughout the day to help adrenal function? That might help if that BP machine was accurate.
These are just my thoughts. Others may have different interpretations, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Summer3
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Thanks Keebler for your reply. I am definitely one to push things. I used to be a daily long distance runner and I definitely have a hard time avoiding that. In fact I love to attempt it when I feel okay.
I didn't have any salt cravings today and I made it until after 10:00 p.m. without needing to go to sleep.
My numbness and pain did not improve with it though. I'm losing the feeling in my hands a lot this week along with my face (for a few seconds at a time) and leg. This is typical the farther I get away from my IV.
I have a few questions for those of you who have experience with this.
1. What do I do now? Should I stay on it or try to wean off?
2. Do you think the energy benefits will last or will it eventually stop working?
3. If the energy lasts will it just be masking my symptoms? How will I know when I'm improving in my energy if I cover it up with the meds?
I feel like I'm covering up a lot of things and not really solving the problem. The cortef/florinef is covering up the fatigue, the magnesium in super high doses is masking the twitching, the glutathione is masking the pain/numbness. Then I get worried when everything starts coming back and some of those methods start becoming less effective at "hiding" things.
Keebler
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posted
- Even if no salt cravings, you still need sea salt in a regular fashion.
1. You need the adrenal treatment in order to be able to get better. If your LLMD has prescribed Florinef and Cortef for you, it is out of necessity for your kidneys and adrenals.
2. You need the magnesium. It is vital FOOD to your cells. Most with lyme are severely deficient.
3. You need glutathione, too. The liver can be damaged from lyme and from some Rx. We must support the liver.
These things are not masking the symptoms, but if symptoms are better, it sure shows that you need these kinds of nutrients. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Summer3
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Thanks, I just worry that it will stop working or when I try to go off it my adrenals and exhaustion will be even worse.
Is this something you need to take for life? Or is it Lyme and co causing the exhaustion and if so, how will I know when that symptom is gone?
The twitching gets better from magnesium for a while, but then returns. I'm up to 2000mg of magnesium or more per day to control it. It used to take 250mg for improvement.
The glutathione is great for energy, pain, liver and numbness but most of the effects wear off after 2 days.
posted
I was on 20mg of Cortef for 3 years. My endocrinologist wanted me to wean off and it took me a year to wean down to 5mg. It took me another couple months to completely stop.
I was given it by my LLMD who did saliva cortisol and found it to be flat throughout the day. I have to say that being on cortef didn't seem to make a difference for me.
When I went to the endo they did blood cortisol and also the ACTH stim test. Both were totally normal and it showed my adrenals were working just fine to stress stimulation.
So about 1.5 years ago I re tested the saliva cortisol and it was basically a carbon copy to the test I had 4 years prior. I feel no different now then I did then.
I do think cortef helps if you really have severe adrenal dysfunction...but I don't think I really did. I didn't have the symptoms of poor adrenals.
Anyway...5mg is really a very low dose and you should have no problems coming off but you definately will have to taper off it. Just don't discontinue it at once.
I want to add that I would not go back on cortef even after my second saliva test. I believed the ACTH test that my adrenals were working okay when stressed.
I am still terrible fatigued all the time but most of that is caused by my poor sleep quality and unrefreshing sleep which has been an issue for me since the beginning....
Posts: 343 | From North Carolina | Registered: Oct 2008
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nonna05
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Anybody else on this Cortef issue,,Should I start a different post?
So that anybody who tried it or stayed away will comment on a shorter post..
Still iffy about the STEROID word
Also if it causes any flare ups of other symptoms
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Summer3
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posted
I'm doing a lot better this week even than my last update as far as energy goes. I had a glutathione IV which was much better than normal and it has lasted longer than usual.
My energy has been very good for the past few days as long as I drink or eat salt and take the 2nd dose BEFORE I get weak for the afternoon.
I don't know about the long term effects but I was told in this low of a dose, it will not be detrimental to Lyme treatment.
I went from non-functional noon through morning to being able to function for full days morning through 9-10p.m.
My other symptoms are not improving though so it gets confusing trying to figure out if I'm improving because my antibiotics are kicking in or because of the steroids.
quote:Originally posted by nonna05: Anybody else on this Cortef issue,,Should I start a different post?
- Please do NOT. It's so much easier to have all the information on one thread.
Summer... I've been on 10mg cortef for about 10 yrs. The amount of help you will get is not all that great (as far as energy), but if your adrenals need it, they need it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Summer3
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posted
So Lymetoo would you think the increased energy/ability to make it through the day is more likely due to the Rifampin kicking in or the cortef/florinef?
but only since I had a negative experience with Rifampin and can't imagine it making anyone have more energy.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nonna05
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posted
That's good that something is working...
TuTu did you take this when you were being treated. Have you or did you have steroid shots at all when sick?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I had been given steroids in the early 90's .. did not know I had Lyme. Have had it since the late 50's... dxd in 2000. So the steroids didn't do me in. I had been under the care of a rheumatologist.
I began Cortef during Lyme treatment . . prescribed by my LLMD. I tried to get off of it 4 yrs ago and I began having cranial nerve pain and my Raynaud's got severe. I got right back on the Cortef.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sammy
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posted
Summer, since the IV glutathione helps you so much, I wonder if your doctor would consider prescribing nebulized glutathione for you to try. Then you could take it more often, even daily at home if needed.
It's also good to take magnesium in doses as your body tolerates. I take approx 5grams per day. This is what I need. My LLMD insists that mag is necessary.
Nonna, as others have said, the cortef is a physiological low dose used to support your adrenals. It is not high enough to suppress your immune system.
I've been on Cortef for low adrenal function and then was able to come off of it when my test results changed. Now I'm low again but we are trying an adrenal glandular supplement called "Adrenal Complex". I take 2 capsules in the morning when my levels are the lowest. I also take other supplements to support the adrenals (all recommended by my LLMD).
If your LLMD is recommending these things then they must think that they will help you. Remember, your doctor wants you to get better too. They wouldn't intentionally prescribe something that would hinder your recovery.
Posts: 5237 | From here | Registered: Nov 2007
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nonna05
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nothing much happening with the cortef that I can tell
,,or something else is shifting.....had two day's last week were I got to doctor ,one I had to cancel to sick,,
I'm just feeling totally rotten, everything hurts, feels bad etc..
where is the progress?
I started the every hour sleeping again and it took from 8am to 3pm ,just to work meds in.
Thought cortef would help some...does it take awhile?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Summer3
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It took two weeks for me to start working, but today I had another bad day and needed to sleep in the middle of the day. TOTAL exhaustion. I think I waited too long for the second dose because I was away from the house and didn't have it with me.
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