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Low-dose hydrocortisone
I was wondering if anyone else has experience with low-dose (5 mg/day) oral hydrocortisone. Below I describe the role it is playing my treatment.
My LLMD Rx-ed this based on my persistent, sometimes disabling, fatigue. At first I didn't take it because I was worried about potential immune suppression, since this is a steroid. But in a follow-up I was assured that this is a super low ("sub-clinical") dose. Plus I am still on abx.
The theory is that my adrenal glands are "shot" from dealing with my illness for so long. Hydrocortisone is something our bodies are supposed to make, and my LLMD thinks that my body isn't make enough of it. I haven't had an actual test of adrenal function, but my LLMD felt that based on my clinical symptoms, this treatment was worth trying.
I've been on it for a few weeks now, and it has provided amazing relief from my fatigue. I was often "crashing" in the early afternoon, or sometimes even late morning. My fatigue was severe enough such that once it hit, sitting up in my office chair was nearly impossible, and I often had to leave work (or miss it!) to rest. It could come on very suddenly too, seemingly out of nowhere. Sometimes I could use caffeine to boost me through, but often it was no match for the fatigue.
I tend to fluctuate a lot in my health status, so often I need to wait months to really be able to look back and average my recent experience, dropping the extreme lows and highs. If I do such an averaging for the calender year, it provides an example of how the fatigue was occurring and affecting me over the past few months. A typical day (if there is such a thing with Lyme) for me in 2011 would be me waking up in my usual time frame 5-6 AM, and feeling "my normal." I'd eat breakfast, go to the gym for 30-60 min, and be at work by 8. Work would start well, but starting as early as 10 AM and often before 2 PM I would literally hit a wall of fatigue, which not only leaves me feeling physically miserable but also destroys my concentration. I'd either manage to limp through the rest of the day if meetings etc. required it, or if I could manage to do so I'd go home to rest.
While I'm extremely fortunate to be working full time again and to have recovered as much as I have, the above scenario was extremely frustrating and made me insecure about my work ethic and insanely jealous of my healthy peers who can easily work much longer. (My illness is not known to anyone at my work, which is my preference.)
On the low-dose hydrocortisone, I still get some fatigue, but overall my energy and stamina are way up, allowing me to work more and to enjoy longer days. As part of my Lyme and Co, I suffer from chronic systemic inflammation, and it seems to be really helping with that so a lot of my symptoms are decreased. I find that with the fatigue better controlled, I can manage the rest of my symptoms typically until around 6 PM before I start to crumble. While I still feel that is an early burn out, it's a big improvement compared to what was happening to me before.
Another positive is that while I was formerly taking NSAIDs on many days to take the edge off of the inflammation (maximum daily dosage of OTC, as recommended to me by 3 doctors!), I don't need them now.
I follow up with my LLMD in a couple weeks, and need to ask questions such as how long I can stay on this treatment. I also want to ask about what warning signs to yield, because I do worry about the steroidal properties having an adverse effect on my health. I was given oral prednisone while still undiagnosed, and I felt great on it but soon after stopping my health rapidly deteriorated. So I'm a bit wary of my current situation with the hydrocortisone, despite the low dosage and LLMD assurance that it's ok to take along with my abx.
In addition to the hydrocortison, I'm also on bactrim and zith, and I take nystatin for yeast. I supplement D & B vitamins and Mg, and take probiotics. I will be asking my LLMD about if any other supps are recommended due to the hydrocortisone, as I know some steroids can zap potassium levels and perhaps cause other deficiencies...
Anyway, I'd be interested in hearing if others have been Rx-ed hydrocortisone by their LLMD, and thought it was worthing sharing my experience so far. I'll update after my next LLMD consult.
Hope all are feeling ok today.
My LLMD Rx-ed this based on my persistent, sometimes disabling, fatigue. At first I didn't take it because I was worried about potential immune suppression, since this is a steroid. But in a follow-up I was assured that this is a super low ("sub-clinical") dose. Plus I am still on abx.
The theory is that my adrenal glands are "shot" from dealing with my illness for so long. Hydrocortisone is something our bodies are supposed to make, and my LLMD thinks that my body isn't make enough of it. I haven't had an actual test of adrenal function, but my LLMD felt that based on my clinical symptoms, this treatment was worth trying.
I've been on it for a few weeks now, and it has provided amazing relief from my fatigue. I was often "crashing" in the early afternoon, or sometimes even late morning. My fatigue was severe enough such that once it hit, sitting up in my office chair was nearly impossible, and I often had to leave work (or miss it!) to rest. It could come on very suddenly too, seemingly out of nowhere. Sometimes I could use caffeine to boost me through, but often it was no match for the fatigue.
I tend to fluctuate a lot in my health status, so often I need to wait months to really be able to look back and average my recent experience, dropping the extreme lows and highs. If I do such an averaging for the calender year, it provides an example of how the fatigue was occurring and affecting me over the past few months. A typical day (if there is such a thing with Lyme) for me in 2011 would be me waking up in my usual time frame 5-6 AM, and feeling "my normal." I'd eat breakfast, go to the gym for 30-60 min, and be at work by 8. Work would start well, but starting as early as 10 AM and often before 2 PM I would literally hit a wall of fatigue, which not only leaves me feeling physically miserable but also destroys my concentration. I'd either manage to limp through the rest of the day if meetings etc. required it, or if I could manage to do so I'd go home to rest.
While I'm extremely fortunate to be working full time again and to have recovered as much as I have, the above scenario was extremely frustrating and made me insecure about my work ethic and insanely jealous of my healthy peers who can easily work much longer. (My illness is not known to anyone at my work, which is my preference.)
On the low-dose hydrocortisone, I still get some fatigue, but overall my energy and stamina are way up, allowing me to work more and to enjoy longer days. As part of my Lyme and Co, I suffer from chronic systemic inflammation, and it seems to be really helping with that so a lot of my symptoms are decreased. I find that with the fatigue better controlled, I can manage the rest of my symptoms typically until around 6 PM before I start to crumble. While I still feel that is an early burn out, it's a big improvement compared to what was happening to me before.
Another positive is that while I was formerly taking NSAIDs on many days to take the edge off of the inflammation (maximum daily dosage of OTC, as recommended to me by 3 doctors!), I don't need them now.
I follow up with my LLMD in a couple weeks, and need to ask questions such as how long I can stay on this treatment. I also want to ask about what warning signs to yield, because I do worry about the steroidal properties having an adverse effect on my health. I was given oral prednisone while still undiagnosed, and I felt great on it but soon after stopping my health rapidly deteriorated. So I'm a bit wary of my current situation with the hydrocortisone, despite the low dosage and LLMD assurance that it's ok to take along with my abx.
In addition to the hydrocortison, I'm also on bactrim and zith, and I take nystatin for yeast. I supplement D & B vitamins and Mg, and take probiotics. I will be asking my LLMD about if any other supps are recommended due to the hydrocortisone, as I know some steroids can zap potassium levels and perhaps cause other deficiencies...
Anyway, I'd be interested in hearing if others have been Rx-ed hydrocortisone by their LLMD, and thought it was worthing sharing my experience so far. I'll update after my next LLMD consult.
Hope all are feeling ok today.
Sorry to hear chlorella didn't work for you. I did see warnings about stomach upset so I take it only after a meal and it has been okay. I need extra detox help right now as my kidneys aren't doing so great.
Though I felt really awful on chlorella!!! Apparently it doesn't agree with some people (luckily a minority).
If I were you I would try it, but regard it as a trial to see how it suits you.
I take psyllium husk instead, which is just a type of fibre that mops up toxins. Not as detoxy as chlorella but it definitely helps me.
If I were you I would try it, but regard it as a trial to see how it suits you.
I take psyllium husk instead, which is just a type of fibre that mops up toxins. Not as detoxy as chlorella but it definitely helps me.
I am convinced that I feel better when I take chlorella. It absorbs toxins. I stopped taking it at one point to see if I noticed a difference, and I did. Taking the chlorella diminishes the yucky awful feeling and also reduces my tinnitus. I read you have to take at least 3-4 grams a day to be worthwhile, and I would agree with that.
I definitely recommend it for someone who wants to detox.
I definitely recommend it for someone who wants to detox.
Ditto, I was told by several LLMD's not to take steroids at all because it can do more harm then good.
"Instead, with the fatigue my entire body literally feels poisoned, heavy, and sore."
I can really identify with that. That is exactly how I felt, and it was far worse the whole time I was on abx. While I still not exactly pleased I had to give up abx before beating the infections, I do feel a lot better on a herbal therapy instead. I still don't know if it was the antibiotics doing that to me, or toxins from the large amounts of bacteria they were killing.
I really hope you can hold out long enough to clear out the infection completely. I think the only thing that can help at all with that yucky awful feeling is drinking as much water as you possibly can.
I can really identify with that. That is exactly how I felt, and it was far worse the whole time I was on abx. While I still not exactly pleased I had to give up abx before beating the infections, I do feel a lot better on a herbal therapy instead. I still don't know if it was the antibiotics doing that to me, or toxins from the large amounts of bacteria they were killing.
I really hope you can hold out long enough to clear out the infection completely. I think the only thing that can help at all with that yucky awful feeling is drinking as much water as you possibly can.
Thank you for your comments, and your follow up to explain your stance.
As you found an old post, you may not know my back story. I was diagnosed with Lyme & co-infections in fall '08 and have been treated since then by an ILADS LLMD, who Rx-ed the low-dose cortef last year. He did so before the results of my saliva test came in, but note that the dose of 5 mg/day is very low, well below levels the body naturally produces, so there was no risk for worsening my Lyme.
I completely agree that steroids are contradicted by Lyme disease, and discussed that point carefully with my LLMD before taking the cortef. Again, here the dose was too low to be of concern. I believe a typical therapeutic level is more like 20 mg/day.
Before being dx-ed with Lyme I spent about 1.5 years going from doctor to doctor, specialist to specialist. My PCP got so frustrated with me that she did Rx prednisone, probably jut to get me out of her hair for awhile. This was before Lyme was on my radar so I didn't know how much trouble the steroids would cause me in the long run. I was on the pred for a few weeks. At first the results were amazing and I though I was "cured." However, a month later and I was worse than I'd ever been, and in fact that is when I was forced to relinquish full time work. I wasn't even 30 at the time, and so that came as a serious blow to me.
So I do understand your passion for warning people about the dangers of Lyme + steroids! I don't like to use the word "incurable," but I do feel that the pred complicated my situation a lot. My LLMD has commented that my treatment has been slow, and I react strongly to even low amounts of abx. My first 9 months of treatment were awful for me.
Anyway, as for my response to the low-dose cortef, it was a case of the law of diminishing returns, and so while it gave me a boost around the time of my original post, the effect wore off. Ultimately, my saliva adrenal testing did not indicate that I needed to be taking it, so I stopped.
I'm still taking abx and I'm still experiencing ups and downs. I have no idea when I got bit/infected, but it has been more than 5 years since my symptoms got to the point of constant intrusion on my life. (Or, 5 years since it "got bad" for me, though there were signs of a problem going back further.) I'm much better overall, but still dealing with terrible fatigue that causes me to miss work and be unreliable at times. I still have a host of other symptoms as well, but they are relatively mild to what they were and I feel that only the fatigue truly stops me from doing things that I want to do.
For me, the fatigue is not at all like "tiredness." Instead, with the fatigue my entire body literally feels poisoned, heavy, and sore. Of course, my cognitive function goes out the window when my fatigue hits. I am at times so fatigued that I become scared to sleep, as my body feels so slow and heavy I worry about just "stopping" in my sleep. My thyroid levels have been tested probably a dozen times over the years, and at worst only ever show borderline hypo levels that no doctor, including my LLMD, feels need to be treated.
I've read other experiences from folks who report their fatigue was the last symptom to go, so I'm holding out that I'm close to done with this mess. But in the meantime I muddle along the best that I can.
Best wishes for a restful weekend and success in treatment and recovery to all!
Hi Wonko,
I just wanted to add to my last comment, I am sorry if I came across as ranting or anything like that.
I just feel so strongly against Hc supplementation because it was so harmful to me and my son that I have touble hiding my passionate feelings about it!
I hope you're feeling better now.
I just wanted to add to my last comment, I am sorry if I came across as ranting or anything like that.
I just feel so strongly against Hc supplementation because it was so harmful to me and my son that I have touble hiding my passionate feelings about it!
I hope you're feeling better now.
I was prescribed a very low dose of hydrocortisone before I found my current Lyme doc.
The Hc made me feel Good for a short while, then I became weak adn tired and felt almost paralyed.
When I found my current Lyme doc, and ILADS member, he asked if I had ever taken steroids before, as that is the main factor that renders lyme incurable. When I told him I only took them for one month, he said "Thank goodness for that".
Putting you on steroids without actually measuring your cortisol raises a red flag for me. If doctor propsed this to me I would change doctor.
To measure cortisol you just have a blood test or a pee test in the morning, or a saliva test which you swab yourself 4 times a day. It is fairly cheap adn far from rocket science, so what possible justification can there be for prescribing you hormones without knowing if you need them?
What if you are tired because you actually have low thyroid instead?
What if you are tired because - shocker here - because you have LYME DISEASE? Tiredness is the main symptom of lyme disease.
If you want to get your adrenal glands working, you need to take the nutrients that your adrenal glands use to produce al their hormones. That way, you'll have all the adrenal hormones, instead of just supplementing one of them.... far better, don't you think?
Read "Adrenal fatigue" by James Wilson,
I have been following his nutrition advice for the last year and a half. Previously my early morning cortisol level was way below the acceptable minimum, now it is top of the range (which is where it should be if you are fighting an infection.)
The Hc made me feel Good for a short while, then I became weak adn tired and felt almost paralyed.
When I found my current Lyme doc, and ILADS member, he asked if I had ever taken steroids before, as that is the main factor that renders lyme incurable. When I told him I only took them for one month, he said "Thank goodness for that".
Putting you on steroids without actually measuring your cortisol raises a red flag for me. If doctor propsed this to me I would change doctor.
To measure cortisol you just have a blood test or a pee test in the morning, or a saliva test which you swab yourself 4 times a day. It is fairly cheap adn far from rocket science, so what possible justification can there be for prescribing you hormones without knowing if you need them?
What if you are tired because you actually have low thyroid instead?
What if you are tired because - shocker here - because you have LYME DISEASE? Tiredness is the main symptom of lyme disease.
If you want to get your adrenal glands working, you need to take the nutrients that your adrenal glands use to produce al their hormones. That way, you'll have all the adrenal hormones, instead of just supplementing one of them.... far better, don't you think?
Read "Adrenal fatigue" by James Wilson,
I have been following his nutrition advice for the last year and a half. Previously my early morning cortisol level was way below the acceptable minimum, now it is top of the range (which is where it should be if you are fighting an infection.)
Just commenting on my own thread to update that while I'm still on the hydrocortisone, my streak of improvement ended on Tuesday when I went into a flare or Herx. By far it is not the worst I've felt, but I missed a lot of work this past week and have been stuck in bed all weekend. Lots of fatigue and "fibro-like" pain.
I have a phone consult with my LLMD on Tuesday and fingers are crossed that I'll be up to working tomorrow. Hope all are having a restful weekend, though I'd really prefer to be out doing something!
I have a phone consult with my LLMD on Tuesday and fingers are crossed that I'll be up to working tomorrow. Hope all are having a restful weekend, though I'd really prefer to be out doing something!
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