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Posted 2/14/2010 2:17 AM (GMT 0)
Hi All,

I have been fighting lyme disease for near 7 years now, only diagnosed 2 years ago.  I was recently diagnosed with Addison's Disease and other hormone insufficiencies.  My doctor believes that the adrenal failure was caused by the lyme disease.  I am on 8 mg of Medrol (methylprednisolone) daily, but have a great deal of difficulty staying stable.

I have MANY addison crisis.  The medrol has helped, but I still am always struggling to not fall low on my cortisol when I do hardly any activity, have lyme herx, or any illness (even a cold).  I'm just looking for any insight into coping with these 2 illnesses simultaneously!

I am wondering how many here have adrenal insufficiency or addison disease AND lyme disease?

If you do have both what steroid do you take?  What dose?

Do you adjust your steroid dose for herx?

Thanks ahead of time for any responses smile

Great Expectations

Posted 2/14/2010 2:36 AM (GMT 0)
hi and welcome

Do you have a lyme doctor? does he know you are taking steroids?

if you google ..lyme disease and prednisone or corticosteroids you
should be able to find out about this combination.

are you being treated for the lyme?? were you treated?

very important your endocrynologist is speaking to your lyme doctor and they both google
lyme and steroids.
Posted 2/14/2010 5:00 AM (GMT 0)
Are either of your doctors (Endocrinologist, LLMD) offering any assistance with nutritional support for your adrenals? If not, I'd strongly recommend asking them about this. The adrenal gland doesn't just repair itself automatically...it needs certain nutrients to recover (such as Vitamin B5/Pantothanic acid).
Posted 2/14/2010 5:12 AM (GMT 0)

Hi bucci,

"Do you have a lyme doctor? does he know you are taking steroids?"             

Yes AND Yes

"are you being treated for the lyme?? were you treated?
very important your endocrynologist is speaking to your lyme doctor and they both google
lyme and steroids."                                                             

Yes I am being treated by LLMD since my diagnosis. 

My dr. who treats the Addison Disease is a LLMD too!  I am blessed.

I'm not sure about your referrence to my needing to google lyme and corticosteroids??  If you do not understand what addison's disease is...you can google it.  

I am taking a Physiological dose of steroids for the addison disease...this is not to be confused with a Pharmocological dose of steroids that would be given to someone for arthritis or lupus or something like that. 

There is much written about how one should not take steroids if they have lyme disease...however, addison disease means that my adrenal glands do NOT produce the cortisol that I REQUIRE to stay alive.  Cortisol is vital for primary life functions, such as maintaining -blood pressure and blood sugar.

It takes knowledgable drs. to treat these 2 difficult, but for me, co-occurring diseases.

great expectations

Posted 2/14/2010 5:40 AM (GMT 0)
Hi great expectations.

reason I ask all these questions is because I am on prednisone for addisons and my lyme doctor tells me steroids is worst thing for lyme.
but you are on the cortisol from compound pharmacy? I was on that but it never worked. then corteff and them prednisone but by that time It was more into a poly myalgic kind of thing.

you really are lucky to have a LLMD / Endocrynologist.

this is major problem for me being on prednisone. I'm down to 10mg after being on 20mg or more for 2 yrs. But I didn't know I had lyme.
and the prednisone was only thing that I could get up and walk around.

what other kind of good stuff are you getting for your adrenals?
Posted 2/14/2010 5:46 AM (GMT 0)
what does that mean "physiological" dose?

I am taking prednisilone really. which is same as prednisone but preconverted so little easier on liver. (I think ??)

is that what you are on?? Did your doc say you will always be on it?

How long you taking it? You got puffy face?? I do but my cheeks were so sucked in before that I look healthier with the puff face . but it not a good sign.

I'm curious what you are taking if it same thing?
Posted 2/14/2010 6:59 AM (GMT 0)

bucci said...
what does that mean "physiological" dose?

Hi Bucci,

The adrenal glands normally produce a certain amount of steroid hormones (for example, cortisol) which are needed to keep our bodies working properly. If someone's adrenal glands fail to produce these steroids, the unlucky person will experience an "Addisonian crisis", which can be fatal if not treated immediately with replacement steroids. Our bodies require these natural steroids just to stay alive.

GE means that he or she is taking the precise dosage that his/her body would normally produce IF the adrenal glands were working.....the "physiological" dosage required to replace the natural hormones.

Someone like me (with no adrenal insufficiency but with multiple autoimmune diseases) takes prednisone for an entirely different reason. I don't take it to make up for a lack of cortisol produced by my adrenal glands; I take it to suppress my immune system. So I take the pharmacological dosage referred to by GE.

BTW, if you have Addison's disease and are also suffering from adrenal insufficiency, you may not be able to get off of prednisone/cortisol entirely....because your body is apparently not producing enough cortisol.

I hope you are doing well at the clinic!

Take care.....
((((((hugs))))))
JoAnn
Posted 2/14/2010 8:09 AM (GMT 0)
Hi great expectations,

Welcome to the forum! There are many people with Lyme Disease that have adrenal, hormonal and thyroid problems. Lyme affects the entire endocrine system. It is great that you have a LL endo. It is so hard to find and endo that is lyme literate. The only thing that I can think of besides taking the steroids, is natural adrenal support. Talk to your doctor about that. It may help you out a whole lot.
Posted 2/14/2010 5:56 PM (GMT 0)

HI JoAnne,

Great explanation for the difference btz "physiological" dose and "pharmocological". 

Basically what I take is to replace the cortisol my body would normally be producing.  Usually people who take steroids for arthritis or autoimmune diseases usually take much larger doses than what I am on and the purpose for these doses is to suppress the immune response...which would make it more difficult for your body to fight the lyme disease. 

Thanks for your comments,

great expectations :-)

Posted 2/14/2010 6:53 PM (GMT 0)

Hi bucci,

So you have addison's disease. Is it primary or secondary?

I have primary adrenal failure (aka addison disease) this means the problem is in the adrenal glands.  Secondary means the problem is in the pituitary that sends a message to the adrenals to make cortisol.

JoAnne gave a great explanantion of "physiological" dose.

Yes prednisolone does not have to be converted through the liver like prednisone does.  I am on methylpredisolone (name brand Medrol)...sounds like the same or very similar to what you are on.

I have been on quite a journey to get to this point... I was diagnosed with adrenal insufficiency in 2008. I was put on hydrocortisone (HC).  my adrenals continued to fail until I was told that I now have addison disease, complete adrenal failure.  I  felt like I was on a roller coaster with the HC, never felt well. My dr. switched me to prednisone, which caused me to gain wt., get puffy face and I still did not feel well...so I was finally put on methylprednisolone (Medrol). 

The Medrol keeps me stable for the first time!  I feel better on it and I am not having constant low cortisol symptoms and addison crisis'.

My dr. says I will be on steroids for the rest of my life.  The amount and/or brand may change, but the steroids keep me alive :-) 

I still have the puffy face, but I'm not gaining wt. on the medrol.  If you are on a dose that is not too much you shouldn't get the puffy face, although, hypothyroid can also cause puffy face.

If you do have addison (AD)or adrenal insufficiency(AI) then you Need the steroid medication.  Much of the literature on lyme states that steroids should not be taken.  The theory is that the steroids will suppress your immune system, but this is not true for those with AD or AI.  Without cortisol your immune system dose not work correctly...with Too much cortisol your immune system does not work correctly!!  So wthout  an adequate dose of steroids an AD patient's immune system does not work well. 

I'll get back to you in a bit with some links to med info supporting my above argument, but basically if your LLMD is telling you that the steroids are not bad for you they simply do not understand AD.

A few questions...

When were you diagnosed addison? How were you diagnosed?

What dose of prednisolone do you take now? what times?

How do you feel on this dose?

Have you had an addison crisis? 

Do you have an injectable form of cortisone for emergencies?

Wishing you Well :-)

Great Expectations

bucci said...
what does that mean "physiological" dose?

I am taking prednisilone really. which is same as prednisone but preconverted so little easier on liver. (I think ??)

is that what you are on?? Did your doc say you will always be on it?

How long you taking it? You got puffy face?? I do but my cheeks were so sucked in before that I look healthier with the puff face . but it not a good sign.

I'm curious what you are taking if it same thing?

Posted 2/14/2010 7:25 PM (GMT 0)
Humm GE
very interesting. I have to ask my pharmacist if I am on this medrol.. I am on predniSILONE
and I was taking cortef and florinef before. my ACTH levels were too low. I think that is the pituitary
signaling off to the adrenals?
I kept trying natural stuff to stay away from the cortisone and ended up needing the prednisone.
and needing 40mg for a few days to even come back to life.

Do you have symptoms of poly myalgia or any rhumatic stuff?

I have more of that going on also. This is life time of misdiagnois. un treated lyme.

I know the worst is behind us all now. This lyme smoke cloud is being lifted and so much more will be revealed.
we have been accepting illness and disease for too long without any real explaination.

Our whole language around illness supports disease.

i will NEVER be this sick again. I am so grateful to finally have a correct diagnosis. It doen't even matter what the treatment is anymore. Just the clarity alone is more than half way out of the hole.
Posted 2/14/2010 8:03 PM (GMT 0)

Bucci,

I so agree that having the right diagnosis and the right treatment is an awesome step towards Healing and Wholeness!!

You mentioned taking 40 mg...I have had to increase my dose after an addison crisis to 170mg, but it saved my life.

poly myalgia? I think this means muscle pain right? If so yes I have joint and muscle pain.  I thought it was ALL from the lyme at first, but now I know that a great deal of the pain was from low cortisol!  My muscles hurt all over and my joints ache like crazy when my cortisol is too low.

Here's my low cortisol symptoms from what I notice first on to actual crisis...

  -heart beats harder, muscles ache, fatigue gets worse than normal, back hurts (where my adrenals are), headache (from blood sugar dropping), irritable, nausea, joints hurt all over my body, shaky, diarrhea, limbs feel like lead, can't think straight, depressed, crying, vomit, no energy to move if I wanted to, Hurt so bad I feel like a bus ran me over and no amount of pain meds makes any difference!

By the time I get to diarrhea I know I am in REAL trouble...If I get to the crying part I am definitely having an addison crisis!  These symptoms vary for each person.  Many people say they notice the crying as one of there early symptoms.

What do you notice when you have low cortisol?

BTW here's a great addison forum I recently found...very supportive and informative :-)

http://www.addisonssupport.com/

Hope your day is good,

great expectations 

Posted 2/15/2010 4:56 AM (GMT 0)
GE what is your body temperature? mine is 96.7 and up to 97.6

I may be on too low of a dose for all my symptoms. but isn't 7.5 prednisone all ANYONE would need to fill that
addisons gap?

I'm blaming everything on lyme while having gone down from 20 mg to 10 in about a a 3 week period and the crying is definitely there and all body aches. but I don't think you get an accurate read on your cortisol in a blood test if you are on prednisone or cortisone..do you?? don't you have to that special test with taking dexamethazone?

how do you check your levels?
Posted 2/15/2010 10:04 PM (GMT 0)
Hi Bucci,

 

My body temp is normal now...but when I was undertreated for addison's and my cortisol was too low my temp was low and I was cold, bone chilling, can't get warm no matter what I did kind of cold.

 

"I may be on too low of a dose for all my symptoms. but isn't 7.5 prednisone all ANYONE would need to fill that addisons gap?"

 

There are guidelines for what dose works for most people, but everyone is different.  7.5 prednisone is a full replacement dose. Since I don't know exactly what medication you are on, i t's impossible for me to say what dose drs. reccommend. The strength of the various steroid meds varies greatly. 

 

"I'm blaming everything on lyme while having gone down from 20 mg to 10 in about a a 3 week period and the crying is definitely there and all body aches."

It is very hard to tell the difference between lyme and low cortisol symptoms. One thing that helps me to tell the difference is that the low cortisol symptoms get worse or better from hour to hour OR day to day But the lyme symptoms cycle every few weeks.  But even with this in mind it is sooo difficult to tell what's what. 

I blamed everthying on the lyme for about a year and was miserable.  In talking to my endo we decided to make some changes in my addison treatment to see if anything would help, and I started feeling Much, Much better.

Okay you mention going from 20mg to 10 in about 3 weeks...this really worries me!  When you go down on steroid medication it should always be done very, very slowly. If you are on methylprednisolone or prednisone drs. reccommend tapering your dose down 1/2mg at a time.  So you would go down by 1/2 mg for a week or 2 then you could try going down another 1/2mg. 

 "but I don't think you get an accurate read on your cortisol in a blood test if you are on prednisone or cortisone..do you?? don't you have to that special test with taking dexamethazone?"

I think what you are thinking about with the dexamethazone is the ACTH stim test. After you are on cortisone meds the ACTH stim test is no longer accurate, unless you switch to dex for 3 weeks before the test is given.  However the ACTH stim test is only given to confirm addison disease, it is rarely done after the diagnosis.

My dr. looks at symptoms to treat addison symptoms accurately. I think hydrocortisone will show up in a cortisol blood test, but I'm not sure. Also my doc tests sodium, potassium, renin to help balance florinef, which I take because of a lack of aldosterone.

Here's some links that might be helpful

http://www.addisons.org.uk/info/manual/adshgguidelines.pdf

http://www.nadf.us/diseases/addisons.htm

What time(s) do you take your prednisolone medication?

wink  great expectations

 
Posted 2/16/2010 3:18 AM (GMT 0)
thanks GE
I try to take the prednisilone in morning but some days i space out and take it in afternoon. I start to feel terrible and the light bulb goes off .."Ahh di I take that Yet?""

so much stuff I'm taking it hard to keep it together . But i am starting to get some good time in now and got myself little more organized. Thanks, GE for all the info on the addisons. So you take prednisone AND florineff. ???

I'm so grateful this today just to have gotten the thick blood thing under control with the heparin. I had no idea what was going on but I can see the difference in just 3 days.

I'm gonna get with a good endo soon as I get this lyme treatment a little further along.

I'm jjust so relieved to finally have figured out the lyme.

and I'm glad you showed up because the prednisilone has been this big black cloud over my head. I won't go down any further on the dose for a while and really not till I find the right endo. i just had to knock down from the 20mg. it was just too high and not doing anything.
Posted 2/16/2010 2:21 PM (GMT 0)
Yes, both are sometimes needed. Prednisone only replaces cortisol, or glucocorticoids, but does not replace mineralocorticoids...hence the need for the Florinef.
Posted 2/16/2010 10:48 PM (GMT 0)

Hi Bucci,

Hope your day is okay.

I agree that 20 mg is too much.

I am on 8 mg of methylprednisolone(name brand Medrol) to replace cortisol and 3 tablets of florinef to replace aldosterone. 

If you get dizzy when standing, have trouble with dehydration, pee often or if your sodium & potassium are not good in your labs you may need florinef.

I'm glad your getting things figured out with the lymes. I know how frustrating and debilitating lymes can be (I haven't worked in 1 1/2 yrs).

I don't know what all the dr told you when you were diagnosed with addison, but forgetting a dose can be dangerous.  I get absent minded so I have a pill reminder with an alarm on it for my medrol so I make sure and take it at the right times everyday.  If you are only taking your pred once a day, you should take it first thing in the AM because your cortisol level is naturally supposed to be highest first thing in the AM. 

I have my first dose in a pill reminder by my bed and I set my alarm for an hour before I want to get up, take my medrol and then sleep for another hour.  This way the meds are in my system by the time I get out of bed.

Many people feel better taking there cortisone meds in 2 or 3 doses each day.  Doctors say that this is not "necessary" but my experience I feel much, much better splitting my dose throughout the day.

Addison disease is complex to treat and maintain and as I'm sure you know, Addison and lyme's together is just a nightmare! 

It concerns me that you don't have an endo or a dr. who can help you manage the addison's.  Some Abx can affect your adrenals and your prednisolone meds. 

What abx are you on?

When you were diagnosed did the doc prescribe an injectable form of cortisone for emergencies and tell you to get a medic alert bracelet with addison disease on it?

Have a good day!

great expectations

 

Posted 2/17/2010 12:33 AM (GMT 0)
GE,

I am so off the grid with my prednisone thing and I doo pee way too much. I drink water and pee it out INSTANYLY.

I forgot again about my meds so no I am doing it like you said.

this mornig I was fasting before blood work so I totally spaced because I think I have to take the prednisilone with food.

anyway I called for an endo appointment with a doctor I rfound listed. they said ..welll he died 2 yrs ago and the first available appointmnet with the other 2 endo's is JUNE!

Why is that you have to wait so long for endocrynologist. I have to find another one that takes medicare. So tomorrow I will call around.

I am only on ZYTHROMAX 500mg IV every other day but also on EDTA which I think is some type chelation. You know , GE , you could be right. maybe that EDTA is sucking up some of the prednisone. I really am flattened out but thinking it is from all
the treatment I am getting.

I'm gonna ask my Lyme doc tomorrow. I forgot about the florinef thing too. I am not getting my scripts for prednisilone from an endo. believe it or not.

Today I'm getting that kidney type back pain . I think it's adrenals again. I lay down all day long. It is beautiful out here. and I just flop back down. NOT EVEN SITTING UP IN A CHAIR.

I wonder about the heparin and the prednisilone??


Are you in the USA or UK?
Posted 2/17/2010 1:57 AM (GMT 0)

Hi bucci,

Ah..allow me to introduce myself :-)   I am 31 yr old female living in Texas, USA

If you have stomach problems you may need to eat with prednisolone, otherwise you don't need food with it.

Sorry to hear that you can't get in with an endo til summer...I think you are on the right track to keep looking for one sooner.  But you don't have to be treated by an endo...if you have a general practitioner that would treat you sometimes they are better than endos because they will take time to listen to you and treat you as a whole person.

If you are "drinking like a fish and peeing like a race horse" you probably need florinef. prednisolone does not have hardly any mineralcorticoid properties so you probably need florinef.

One thing that indicates cortisol is low is a debilitating, "can't move if you wanted to" kind of fatigue.  You might talk to the dr. who is prescribing you the prednisolone about taking it part of your dose in morning and the rest in afternoon (3pm or so).  This might help you feel better throughout the day.

One thing I have noticed is that myself and the 2 others I know who have lymes and addison's disease require higher steroid dose than "normal" addison's patients.

Who is prescribing your prednisolone?

Where do you live?

GE - aka paulette

Posted 2/18/2010 4:01 AM (GMT 0)
I am glad you posted this discussion about addison's and adrenal fateague. I was diagnosed in 2006 with adrenal insufficiency (borderline) and took cortef for about a year. Now my numbers are a little better, but I still need a stress dose of cortisone before any procedure or surgery. It was interesting to read the symptoms of low cortisol because I have many of them and have attributed them to Lyme. I think maybe i need to get my cortisol tested again. Thanks for sharing your knowledge.

Rose
Posted 2/18/2010 7:21 AM (GMT 0)
yep . dito for me too Willow.

GE. I am in Arizona right now. Mesa. You know the thing that is throwing everything off is the swelling in my legs. and it may be more from thick blood than the steroids.

I just went on heparin and my head no longer feels like a bowling ball or like I am having stroke.
This whole steroid thing has been a mess right from the beginning. playing around here and there with giving me cortef and then the bioentintal version which never worked and then being tested with an overdose of dexamethazone before doing the ACTH test or i don't even remember the name of that test but it couldn't be done while on cortisone.

all this was done without knowing I had lyme and here is the scairiest thing for ANY of us on steroids. Lyme comes very often with parasites and one of them is STONGYLOIDES.

If you have strongyloides and are on steroids it is DEADLY.
no one should ever be treated for like asthma with steroids without testing for this strongyloides.
The amount of chest pain and just no breath in my body i was having was frightening and my doctor couldn't figure out how I was even walking around.

When they tried to treat all three of my parasites with herbal concoction that not only tasted worse than anything i ever tried and I have tried some nasty stuff. The die off nearly killed me. I had to get from the pharmacy ..IVERMICTIN for the strongyloides and stopped taking the herbal thing.

I got some other pharmacutical thing for HOOKWORM and for the amoebia fragiallis I was prescribed flagyl but both my lyme docs said I could never handle that now.

So if there is ANY way for all of the addison /lyme people or any of us on steroids to get checked for the parasites I highly reccomend it. especially this strongyloides.

if you google strongyloides and prednisone you will find what i am talking about.

there is so much more to this lyme picture than I even want to know. I really think anyone who has addisons and lyme has this lyme for a long time.

just curious..how long you addison peeps have the lyme? which one did you discover first the addison or the lyme and how many of you have been tested for parasites and what test did you do.

wow..I'm tired now
Posted 2/19/2010 8:00 PM (GMT 0)

Hi Rose,

Yeah it can be so hard to tell the difference btw lyme and adrenal insufficiency's symptoms.  I also think in my case the lyme has continued to damage my adrenals through the past few years :-( 

I'm glad you still have some adrenal function...I'd definitely test if you think they may be low and support them if needed.  I just wonder sometimes how many people have lyme and don't realize that they also have some degree of adrenal insufficiency.  It sure took me a while to get it all sorted out

Blessings,

great expectations

Posted 2/19/2010 8:28 PM (GMT 0)
 

Hi bucci,

Hope you're doing okay today!

I'm glad you brought up the parasites...I don't even think I have been tested for parasites.  I'm going to have to bring this up at my next dr. appt.

I have had lyme for 7 years, only diagnosed a year and half ago.

I was diagnosed with adrenal insufficiency first, and lyme about 6 months later.

Wow, I am sitting here looking back at my treatment and I am realizing that in the past year and half I have only had about 9 months of antibiotic treatment because my addison disease was not being properly treated so I kept having crisis'. 

My lyme symptoms are better than they were, but I have not been on abx for a couple of months, while I finally got my addison under control.  I can tell some of the lyme symptoms are getting worse again, so hopefully I can go back on abx and be able to handle the herx without ending up in a addison crisis. 

Thanks for the conversation I've really been enjoying it :-)

Great Expectations for the future!!

Posted 2/19/2010 11:08 PM (GMT 0)
Ok. GE.
I keep harping on this parasite thing because I hear mre similar nightmare cardiac situations and no one ever finds anything. and that to me is the tipp off of the strongyloides. also if strongyloides and on prednisone is deadly.
the stoool tests are tricky and I only trust the one lab for it .
metametrix or is it metagenix? it was the 2100 series and naturopaths should have it in their office. lavender and white box but it costs $395.00
But I just did another stool test that covered all kinds of gutflora stuff and candida and it came back NO parasites. so I really see now that some labs are not picking up everything. this lab test was also covered by insurance.
but it came back no parasites when I know I still have the diaomebia fragiallias parasite becasue I didn't treat it yet with the flagy and at the time I did this test 2 weeks ago I didn't have any antibiotic work done yet.
Also the diaomebiafragialllis still comes up on the biomeridian machine and the strongyloides doesn't.

so in my personal diagnosis of myself :which is the most important one in "MY MIND" the fragiallis is still there and has to get knockd out but with all the stuff that is going on with me I could not have done anything untill that strongyloiddes was gone. and it may not be all way gone either. it is very hard to get completely rid of if you have so much lyme stuff.

yes,,this forum works incredible for us all. This would have really been so lonely and I would have gotten none of the important info I needed from the other people.

thank you everyone,
Bucci
Posted 2/20/2010 8:17 AM (GMT 0)
have you tried aldactone ??
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