Just to make sure to get it out of the way, this is something I'm discussing w/ my LLMD so it's not me going off on my own from her protocol. Dr. Burrascano, I believe, recommends steriods in some cases and I was wondering what people thought about their use in low doses? Never? Sometimes?
I'm asking because I have an extremely hard time tolerating the IV Medication that I'm on, but have reason to think this is because of die-off. If that is why, then probably my body is reacting to the die-off with even worse inflammation and symptoms. So my question is, what would be wrong with limiting this, since it can't be helpful, and obviously if the medication is working it is, at best, unnessary and really disabling?
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Steroids...never...
Well...almost never.
My sis HAD to resort to steroid shots directly into her eyes (x2) to prevent blindness. She had uveitis and at that time could only see the big "E" on the chart. The inflammation triggered by Bb was doing permanent damage.
She was told the steroid shots into her eyes acted very locally.
It worked. Her eyesight was saved.
However, she was misdx'd originally and was given oral steroids and she zoomed to stage 3 lyme.
She is now "autoimmune".
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I would say AVOID unless you have an immediately life-threatening problem, such as asthma.
Many of us are on cortef for weak adrenals. That is a really low dose of a natural cortisol. But even that can cause problems.
The main thing you want to avoid is the immune suppression that comes from taking steroids. You can't get well if your immune system is suppressed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I think you've got it wrong about Burrascano guidelines.
Here's what they say on p. 12:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
Why not go to the Guidelines (http://www.ilads.org/burrascano_0905.html) and do a word search on "steroids" or "immunosuppressant" and see for yourself.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Status asthmaticus is treated with IV Magnesium.
Mg IS an anti-inflammatory, anti-histamine...is attached to ATP, is needed to make all the enzymes...
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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posted
I am on cortef for weak adrenals. I take 5mg in the morning and 2.5 at noon. I have been doing this for over a year now.
It does worry me and many times in the past my doctor gave me cortef prescription, I would fill it, take it for a while, and then stop.
Now, I believe it is really helping me.
But, I am curious as to the long term affects/dangers. If anyone has input, I'd be glad to hear about it.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
In this case, no. Steroids would not be appropriate. However, slowing down the IV administration with the doctors approval isn't a bad idea if the Herxheimer reaction is intolerable.
Only you can know what is or isn't tolerable for you. Taking a break is more often useful than anything else during a serious Herxheimer.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Here, we report that the host neuroendocrine stress hormones, epinephrine and norepinephrine, are specifically bound by B. burgdorferi and result in increased expression of OspA.
Our studies suggest that B. burgdorferi may co-opt host neuroendocrine signals to inform the organism of local changes that predict the presence of its next host and allow it to prepare for transition to a new environment.
posted
If you have weak adrenals or Addison's disease, you need to replace what your body is not making or else you can't get well.
Taking more than what your body naturally makes is another issue, but I defer to the others because I just don't know.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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dontlikeliver
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Member # 4749
posted
I have been on Cortef 5mg daily for about 3 months now and it has changed my life.
I have decorated four rooms in my house, unthinkable for the last decade till now.
Dr. B has said (I've HEARD him say it) it is OK to take Cortef for people with adrenal fatigue - they need it to recover. I believe this as I feel so different, like a 'normal' human being on it, 90% of the time. I am not on any abx now, btw. Only Cortef and Malarone.
I think I've gained 7-10 lbs on it though, but I'll take that tradeoff for what I can do these days.
As far as I understand, Cortef low dose is NOT like taking other steroids, which are NOT good.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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ArtistDi
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Member # 2297
posted
Hi. I think I am one of those rare lyme patients who has had to be on low dose steroids plus IV antibiotics to be able to calm down a vasculitis-like assault (after too strong oral drug combo). Both my llmd and drug allergist consulted and that was the plan. I have an autoimmune component to my illness, and as nasty as steroids can be, they saved my life.
I would have lost the game without their inclusion. I have had to calm down my body after the drug assault, and it has taken years for me to get where I am now. I had headaches and seizures after the drug assault for years; pain like a knife in my head 24/7 and no way to get oral medication in my body. After three days on the steroids, I could walk a straight line one foot in front of the other. I had no pain. Before, I had to be assisted to try to walk for that test or I would fall over. My llmd thought it was a miracle, as well as my pcp and neuro. We "took the progress."
So, yes, in some cases, when it is the "last resort," as my doctor uncle says, it is done. Yet, steroids should always be used in tandem with antibiotics.
I know of other llmds who do use this type of protocol with hard-core patients.
Posts: 1567 | From Hatfield, MA, USA | Registered: Mar 2002
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I have weak adrenals, diagnosed with Addisons. I do not believe I could have survived or gotten better without Cortef.
This is a natural "steroid" that the body makes in the adrenals, and that we need to have in our system to deal with physical stress on the body and fight infection.
Taken in doses too high, it will depress the immune system. Doses too low will also depress the immune system. It can be a tricky balance.
At the beginning of my lyme treatment I was on 35mg to just get out of bed. The highest level usually recommended is 20 mg. Most people take 5-10. I currently take 15mg a day, and am working my way down.
In my experience, if your dose is too high (high enough to worry about your immune system beginning to be supressed), you would know because high Cortisol makes people really anxious, and it is very hard to settle down or sleep, regardless of how tired you are.
In my experience, levels too low, and you have low blood pressure, and find it nearly impossible to get out of a chair and do anything that requires you to be upright, and the body won't have the energy needed to fight infection.
-------------------- 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
Was searching about Addison's. This information was incredably helpful.
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
A discussion of adrenal therapy for lyme patients is discussed here in this book, by an ILADS member LLMD.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Steroids internaly NeverUse anti inflamatories instead. Steroids Externaly maybe
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I think you have to make a distinction between replacement doses of glucocorticoids to treat adrenal insufficiency and super-physiological doses used to suppress immunity.
If you have adrenal unsufficiency, the risk from that may be worse than the effect of the replacement dose (typically Cortef). Normal cortisone levels that are supplemented with immunosuppressants (often methylprednisone) are going to cause problems when infection is already present.
Always this or never that rules are a problem in the real world I think. Looking at the treatment options with a risk/reward trade off may help. If I had to choose between low dose GC treatment to keep my job (and health insurance) or risk having to stop treatment altogether it would be a tough call.
Posts: 263 | From Capital Region, NY, USA | Registered: Jun 2008
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