I have been wondering if it was the low dose of hydrocortisone that has made me this sick as I am now. I took it when I had no idea that I had Lyme.
Here is what happened: Last August I suffered from extreme fatigue and my saliva test showed that my adrenals were exhausted. So a ND prescribed me hydrocortisone. I started taking them on Sep 1. Started from 2,5 mg and slowly upped to 20 mg a day (10+5+5).
But that didnt really help with the fatigue. In fact I didn't feel any effect at all. So in addition I decided to try a herbal product which had a lot of immune boosting herbs (echinacea, astragalus etc). This happened in October. And boom!! That was a big mistake. After 1 day I got burning pains all over the body. I stopped taking the product the next day but the burning remained.
I also stopped taking the hydrocortisone a couple of weeks later. But the damage was done, the horrible burning, stinging pain (neuropathy) was stuck with me - and it still is.
In November I learned that I have Lyme.
So could it be the hydrocortisone that did this to me or the combination of that and the herbs? I had no symptoms while I was on the HC only. Any similar experiences? And is there any way out of this horrible situation?!
Thanks
BF
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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posted
Had a epidural steroid injection (ESI) in the lumbar area of spine 4 years ago. The result was neuopathic-like pain, as in 3 burning daggers, in the low back and the sides of both knees. The pain progressed from mild/moderate to severe within days to weeks.
The treatment for back pain, which Dr.s love to prescribe, has caused an unending nightmare for me.
Posts: 175 | From Colorado | Registered: Feb 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I was diagnosed with reflex symphathetic dystrophy. My God, I went through 13 lumbar blocks and stayed on steroids for years....
I wonder how this will affect things. Does the affect of the steroids wear off eventually or am I a ticking time bomb?
They they diagnosed me with asthma and gave me inhalers....Lord...........
I wish i knew for certain what was in those blocks. Anybody know???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hey Barton,
Try not to panic. All indications are that people get better on good lyme treatment. You will too!
Based on my education and experience, a low dose of cortisol (20mg or less) should not make lyme worse, and could even help heal from lyme.
The body should produce 40 mg a day of this steroid naturally. As long as you had a saliva test indicating that your cortisol was very low, you most likely did not get a big enough dose to do you damage.
The trick with cortisol, is that in doses too high or too low, it will depress the immune system. Docs often give high doses for pain mgmt or to depress the immune system for autoimmune diseases.
While taking cortisol your body gets used to the supplements, takes a rest, and stops making its own for a while. It can take months to taper off a 20 mg a day dose, even if you have been taking it a short time.
If you stopped cold turkey, you may have very low cortisol at the moment, which could compromise your immune system as well, and allow for lots more inflammation at the same time. Sorry to mention.
The trouble with lyme is that sometimes we don't know when we are experiencing the lyme getting worse, and when we are getting a healing reaction (herx.)
It is possible that with the cortisol and the immune boosting herbs that you boosted your immune system into a healing herx. While it hurts, its sometimes a good sign.
My hunch is that neuropathy, especially in the major joints near large lymph glands, is exacerbated (or even caused???) by toxic lymph from dye off of some pathogen in your system.
I find that when I am healing (herxing) my shoulder neuropathy hurts more. darn it. This could possibly have been the start of your pain.
Personally, I'm on 20 mg cortisol a day. I'd rather not, but I couldn't seem to heal without it. My low cortisol was so low that when I'd stand up my blood pressure would plummet and not come back on its own. I was on 35 mg, and have been able to reduce my dosage as my health has improved.
Disclaimer here - check with your LLMD. These are comments meant to be helpful, but just from the peanut gallery and not your physician.
"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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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Barton, do not despair, my LLMD said Cortef is usualy Rx'd in much lower "pysiologic" doses than other roids like Prednisone and the Depo injections.
I was on 30mgs Cortef for 3 months w/out a problem.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Thanks for your answers. Sorry to hear about your troubles SouthernCO and randibear.
Thanks for your encouragement bejoy & Foggy!
The most puzzling thing with all this is that I had no problems whatsoever when I was on 15-20 mg of hydrocortisone *only* - the problems didn't start until I tried that herbal supplement. So it seems unlikely that the HC alone could have caused this; maybe it was a combination or even the herb itself. I found this an article entitled: "10 most common herb mistakes" and it says:
"5) You take immune-boosting herbs like echinacea and goldenseal with immunosuppressant drugs, such as corticosteroids. - - Herbs that stimulate the immune system may counteract these medications, resulting in transplant rejection, an exacerbation of pre-existing autoimmune disease, or precipitation of autoimmune disease in people genetically predisposed to such disorders.
Tip If you are taking immunosuppressant drugs such as the ones listed below, do not take the herbs alfalfa, astragalus, echinacea, ginseng, licorice root, or the mineral zinc."
I also found out that according to Buhner, astragalus can be harmful in late Lyme disease. I wonder if that alone could have caused this?
BF
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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quote:Originally posted by bejoy: The trouble with lyme is that sometimes we don't know when we are experiencing the lyme getting worse, and when we are getting a healing reaction (herx.)
It is possible that with the cortisol and the immune boosting herbs that you boosted your immune system into a healing herx. While it hurts, its sometimes a good sign.
Yes I have been thinking about this herx possibility. The problem is: this symptoms has remained pretty much unchanged during this 6 months. Any idea if a herx can really last that long?
Thanks
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Bejoy is correct.
Basically those two substances do exactly the opposite of each other.
Hydrocortisone is an immune supressive - and the herbs are a class of immune enhancers...
Probably not a great idea to mix things that have opposite effects.
Obviously, the oral form of steroids is much different from the concentrated epidural which was injected into my lumbar spine.
About a year ago, I was diagnosed with Tarlov disease (golf ball sized Tarlov cyst in spinal canal at S2-S4) which can cause many of the neurological symptoms which have disabled me. When I asked the neurosurgeon at Johns Hopkins if the steroid injection could aggravate the cyst and cause the sudden and severe knee pain, he said without hesitation, "Yes!". This was before the Lyme diagnosis of the past few weeks.
My point is that my problem could well be unrelated to my Lyme problems. Additionally, when I eliminated dairy from my diet the symptoms have improved somewhat so there may be some hope.
Best of luck to you.
Dave
Posts: 175 | From Colorado | Registered: Feb 2007
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Probably not a great idea to mix things that have opposite effects.
Barb [/QB]
Definitely. I just wish I had thought about that back then.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Keep in mind that cortisone (aka: cortef, cortisol, HC, epinephrine, hydrocortisone)is immunosuppresant only when very high or very low.
Cortisol is something that the body produces naturally and needs to survive and to tolerate stress.
There is some consensus in this community that skin burning pain improves with B12. There is a post on this, but I haven't yet figured out how to link to it:
skin burning pain? 21 March, 2005 Medical Questions
I hope this post from two years ago might help if you do a search.
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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Thanks for the tip but I've tried b12 (methylcobalamine) 3 mg orally but it didn't make a difference.
-------------------- Please dont suggest "ask your LLMD" because we dont have them here in this country... I just have to count on you fellow patients. Posts: 246 | From Finland | Registered: Dec 2006
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
BFink, the only thing that help the buring was abx. Awful stuff, my sympathy.
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