Cortef/Hydrocotisone

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scorpio1960
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   Posted 4/9/2010 4:03 PM (GMT -6)   
Hi All, Once again I apologize for not being on the forum in a long while.  I think of you all often and always keep everyone in my prayers. 
 
I was wondering if anyone else is on cortef/hydrocortisone.  I'm being treated by one of the top llmds and although I totally trust him for some reason I need a little reassurance before I take my first dose.  I suffer with profound fatigue that has not responded to very aggressive treatment for lyme and coinfections.  I recently had cortisol testing done which was low but not as low as my llmd and internist expected it to be.  He gave me a prescription for 10 mg cortef 2 x per day and told me to hold off until the testing came back.  Well, I received a message from his PA telling me that he reviewed the results and I should go ahead and start but for some reason I'm very hesitant even though I'm sure he knows what he's doing.  I guess I'm just looking for some reassurance from others who have taken this med at the direction of their llmd.
 
Hope everyone has a good weekend!

CajunGrl
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   Posted 4/9/2010 7:58 PM (GMT -6)   
What mg. of hydrocortisone are on? I am taking 10mg in the AM and 10mg in the evening and doing well. I feel better.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

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scorpio1960
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   Posted 4/9/2010 9:10 PM (GMT -6)   
Hi CG, I'm so glad you're feeling better on it. Is 10 mg considered a high dose? My llmd prescribed the same dose you're taking but he wrote the prescription before the results came back. Now that my levels are not as low as he thought they would be I'm afraid this dose is too high even though his office instructed me to go ahead and start it. I second guess everything these days...lol!

CajunGrl
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   Posted 4/10/2010 5:41 AM (GMT -6)   
Before I even considered taking it myself, I read, researched, and asked other people with Lyme Disease that was taking hydrocortisone, what dosage was best. 20mg a day is the standard dosage that is given to Lyme patients. In a prednisone(steroid) pack, the dosage can get as high as 60mg, so 20mg is pretty low. I've read that hydrocortisone at 20mg is actually lower compared to 20mg of prednisone.

What are you taking it for? I'm on it for Adrenal Fatigue and my doctor also thinks that my immune system is going haywire. I have noticed that when I start getting tired around 3:00pm, that if I take my meds then, it perks me up a little and I'm not so tired anymore.

Also, don't ever stop hydrocortisone or any steroid cold turkey. You should always wean yourself down slowly.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

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CajunGrl
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   Posted 4/10/2010 5:48 AM (GMT -6)   
I re-read your post and am assuming you must be taking it for Adrenal Fatigue? As long as your levels are monitored, I don't think you have anything to worry about.

I also want to tell you the side effects I experience. I sweat alot and sometimes feel a little agitated but its not bad at all. The "good" that I feel from it outweighs those two side effects.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

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PainInFL
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Date Joined Aug 2007
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   Posted 4/10/2010 5:53 AM (GMT -6)   
Hi Scorpio,

I'm a Scorpio too!

Do you know what your am cortisol levels were? This crappy disease wreaks complete havoc on the adrenals. My lowest levels at my sickest point were <.5 am and normal is 4-22. I was at one point diagnosed with Addison's Disease but as we all know, we are going to get a handful of diagnosis' along the tx journey. I did have to take dexamethasone prescribed by my endocrinologist for awhile but it was VERY reluctantly on my part considering steroid injections made my Lyme come to the surface initially. I'll be honest with you, I did not take every single dose.

Once I got on the treatment that worked for me (Vanco/Flagyl) and my levels rose a bit, my LLMD instructed me to stop taking it. I got my LD into remission pretty quickly after that and my adrenals rebounded on their own. In fact, at one point I saw 5 specialists for the various effects of LD, including a cardiologist. I haven't needed any of them after successful tx.

My recent relapse was caught quick and my LLMD is attacking aggressively again with Vanco/Flagyl and I already feel better after a week of tx. My protocol is 2-4 wks but I plan to stay the full course and more if necessary to ensure this is back in remission. My LLMD feels that either stress or a herniated disc caused the flare.

Keep your chin up, your adrenals will rebound. In the meantime, if you have a reputable LLMD that advises you need the Cortef, I would take it.

Best of luck to you!

Anne
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, and many other things....etc, herniated L5/S1, Relapse 3/2010-Currently on Vanco/Flagyl for 2-4 weeks with this first relapse, Hydromporphone/Percocet for pain, Soma, Clonazepam


scorpio1960
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   Posted 4/10/2010 6:57 AM (GMT -6)   
Thanks CG and Anne. Both the llmd and internist were surprised the levels were not much lower because the fatigue is so bad. I get tiny spurts of energy throughout the day but sometimes it only lasts for a few minutes and even just moving from the bed to the couch can wear me out. I also usually have a little more stamina at night which really doesn't make too much sense considering the results listed below:

Specimen Collection
6.8 at 10:00 a.m.         Reference Range: 7.0 - 10.0   Optimal Range: 8.0 - 15.0

3.7 at 2:15 p.m.           Reference Range: 3.0 - 6.0     Optimal Range: 3.0 - 7.0

0.6 at 6:15 p.m.           Reference Range: 2.0 - 4.0      Optimal Range: 2.0 - 4.0

0.7 at 10:45 p.m.         Reference Range: <1.5            Optimal Range: <1.5


What test do your doctors use to monitor you? I believe standard labs came back within the normal range.

Post Edited (scorpio1960) : 4/10/2010 7:02:30 AM (GMT-6)


scorpio1960
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Date Joined Jan 2009
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   Posted 4/10/2010 7:29 AM (GMT -6)   
I just read on-line that there's an interaction between hydrocortisone and oral rifampin (300 mg. 2 x per day) which I'm also taking. Of course I panicked and immediately called the pharmacist who said that while taking rifampin my body will only absorb 40-50% of the hydrocortisone. I think this makes me feel a little better about taking the hydrocortisone but who knows.

BTW, how long will it take to feel the results of the hydrocortisone? Will it be immediate? What time do you take your second dose of the day?

I never would have guessed a year after beginning aggressive treatment my mind would still be so scrambled...lol!

Post Edited (scorpio1960) : 4/10/2010 7:36:37 AM (GMT-6)


scorpio1960
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Date Joined Jan 2009
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   Posted 4/10/2010 9:08 AM (GMT -6)   
Anne, I'm glad you're feeling better and was able to get the LD under control. With any luck I'll eventually be joining you. Stress can certainly mess with us big time but how the heck are we suppose to avoid it with all we're dealing with. I use toj be level headed and calm and now the smallest thing can send me into a complete tizzy...lol.

+Lyme
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Date Joined Apr 2009
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   Posted 4/10/2010 10:04 AM (GMT -6)   
I'm sorry, but I am confused. (surprise surprise). I think I asked this before, but can't remember... sorry....
 
I thought, that in my research on Lyme, I'd read and heard several times that steroids are really bad for lyme and they can make it a lot worse. Now, I'm seeiing some of these discussions on hdyrocortisone.
 
I am treatmentless at this time, but am preparing to make appt w/ a Dr or Endo about my thryroid and adrenal fatigue.  I feel like my adrenals are about my worst symptom right now besides the back and neck pain (went to a chiro yesterday to start looking at that).
 
I have not seen much other treatment for adrenals besides steroids of some sort, and except 'supporting' them w/ proper diet, etc.
I agree w/ you scorpio --- I am constantly overwhelmed just by daily life and if the least thing pops up, I fall apart.
 
And CG, you said you start getting tired around 3 pm every day.  What's been happening to me is a black depression starts up around 4-5 pm each day. That's why I feel it's physically caused. It is at times unbearable and it's scary too. I think about the 'S' word a lot. Even tho I know I don't really want to, it is scary that the body can cause the  mind to work these tricks on us.
 
 On my old lab tests where LLMD pointed out low adrenals, he wrote 'happy' -- meaning these can affect your feelings of happiness. The hole I go into is very dark. Unfortunately, I've alo figured that this is a part of the 'Mike's' problem. (hard pomegranite punch).  Physically, I crave that sweetness, mentally, I crave that temporary mood relief, and physically, I crave the pain relief.
 
Anyway, my main question is just the one above -- about adrenals and steroids.  Because I'm really scared of steroids. Yet I really need help w/ my adrenals --it feels like the moods they're causing are preventing me from moving forward w/ any kind of positivity. (is that a word)
Please tell me about this development -- steroids vs lymeNeed not be complicated or detailed, just the general idea, OK?


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 4/10/2010 10:15:12 AM (GMT-6)


scorpio1960
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Date Joined Jan 2009
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   Posted 4/10/2010 10:42 AM (GMT -6)   
Hey +Lyme, I understand all too well where you're coming from. Even though I trust my llmd I was scared to start the hydrocortisone because of everything I've read about steroids and lyme. My brain is total mush right now but I'm sure CG will be come back and answer your question about why it's sometimes okay in small doses.

As for the severe depression after a year of aggressive treatment for lyme that has finally resolved. Although I'm still depressed, it's nothing compared to the sudden, severe bouts that would come over me....very scary stuff.

I also have a big problem with sweet cravings. My llmd said the cravings are due to the disease. He suggested taking a supplement called Glucose Tolerance but to be honest it hasn't helped at all with the cravings.

Does the endo you plan on seeing understand lyme disease and the dangers of steroids when it comes to lyme disease?

Hang in there and good luck.

+Lyme
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Date Joined Apr 2009
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   Posted 4/10/2010 11:32 AM (GMT -6)   
Scorpio -- I have not made the appt yet, but I will either go to the endo recommended to me by my daughtinlaw, or back to the first PCP I saw who had prescribed thy meds. (I did not go back for this because I had gotten into a LLMD).

Currently, no one that I will see will be knowledgable of Lyme. (at least the Chrio believes in it) So once I get new labs, I'll have to do research on it. I'm just desperate to get out of this thy/adrenal mess I am in. I have JW's book on Adrenal Fatigue and I can't even get the motivation to read it, but will do the best I can....

I am STILL on an LLMD's waiting list (been 1 year now) and called them this week. They said maybe in another month or so.

Agreed, Scorpio -- I had been treated for recurring depression on and off for about 30 yrs. NONE Of my WORST bouts was ANYTHING like this -- there is a very distinct difference, isn't there?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


PainInFL
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Date Joined Aug 2007
Total Posts : 1430
   Posted 4/10/2010 12:14 PM (GMT -6)   
Scorpio,

I would definitely double check on taking the hydrocortisone. From what I understand, your levels don't look that low but I'm no Doctor...just going off of my experiences. As you are well aware, LD messes with everything and successful tx resolves many issues after time. I would feel just like you on taking anything that could possibly set you back. If I was in your position I would wait until Monday, call the LLMD and reverify while having an in-depth discussion if possible about your concerns.

+Lyme,
Your confusion is very valid. I myself was put into full blown LD by steroid injections so I am on the side of NO STEROIDS unless I need them to save my life. I have always taken this position, stodd my ground with the specialists, and they compromised with me on .5 dex to be on the safe side since my am cortisol was the lowest any of them had ever seen. I did this for as short of a period possible and still can' say if it ever helped. I freely admit to skipping doses, etc for fear of tx setback.
Infected in 1988.  DX w/Lyme, HGE, Bartonella 2007.   Successfully treated 2007-2008 w/Vanco, Flagyl, and many other things....etc, herniated L5/S1, Relapse 3/2010-Currently on Vanco/Flagyl for 2-4 weeks with this first relapse, Hydromporphone/Percocet for pain, Soma, Clonazepam


bablymers
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Date Joined Oct 2006
Total Posts : 1458
   Posted 4/10/2010 3:41 PM (GMT -6)   
Hi scorpio,

I'll tell you my personal experience in the hopes it may help you. I took the "spit" test with four samples. Results were that I was very low and suffered adrenal fatigue. Docs put me on small dose of Cortef to see what would happen. The dose for me started very low because I am sensitive to lots of things----and even small changes can seem to throw my body into a crisis. The largest dose they would put me on was still only 10 mgs Cortef per day. They said that at 12 mgs. it can actually suppress the adrenals, and we wanted to simply give the adrenals a "rest", support them with supplements, and see if they would "come back" and work. I took the 10 mg. Cortef for about 7 months and never felt any improvement. Then the docs weaned me off. Maybe the dose was too low to make a difference but I was scared to go higher anyway, fearing a lyme flair. I think other people have had good responses to small doses of the steroid.

Next they tried putting me on thyroid med----from a compounding pharmacy, that makes up capsules for me of T3 only. Wow, after they worked up my dose slowly, to 30 mcg, I felt alive again. For me, I went from the "walking dead" to feeling like I actually had some rest and could do things again. It was an extreme positive for me. Before treatment, my thyroid had tested right at the bottom of the normal range, and other docs would not treat me for anything. My lyme docs were more understanding and willing to try things to help me feel better. I am so glad they did!

We are all individuals and it seems no two of us react exactly the same. The same docs tried these methods on my daughter and none of it helped her at all. We both are planning to see an endocrinologist that our lyme docs think highly of. I met him when I took a friend of mine to see him and I liked him. He seemed very knowledgable and creative. Nothing like other docs and endos. that I have seen in the past. The others were useless, and did not seem to know much or how to answer my questions.

Best wishes to you. I hope you find the help you need.

bablymers mom

CajunGrl
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Date Joined Mar 2009
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   Posted 4/10/2010 7:53 PM (GMT -6)   
I just wanted to let everyone know that I read the post here and I will try to explain it better tomorrow. I am exhausted right now and my brain is not functioning correctly.

Scorpio- If your LLMD wants you taking this low dose of steroids, I'd continue taking it. You can always wean off later if you don't think it is working. I highly doubt that being on the low dose you are on will cause any bad flares, etc. This low dose will help your adrenals and you will probably notice a difference in energy levels. It takes a while to get into your system. This is called peak and trough. Your levels will peak, which means they will get to the level that they need to be, which will take a few days to a week(maybe longer), then they will trough, which means that they will stay at a certain level and that is where you need to be....at that steady level. Anyway, I am babbling again and I hope I didn't confuse you. I will explain more tomorrow.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Agmaar
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Date Joined Jan 2009
Total Posts : 376
   Posted 4/10/2010 8:07 PM (GMT -6)   
Hi Val -
 
Just a couple of thoughts.  Could you start off with 10 mg/ day for a while to see how it goes before you step up to
10 mg x 2 per day?
 
Also - when I took cortef - right before Lyme was confirmed - my depression really tanked and I ended up hospitalized.  The staff psych thought cortef could really have aggravated the depression.  Just something to watch for. 
 
An endo told me that people with real problems with low cortisol usually show a fast response and feel much better when they take cortef.
 
Have you had the ACTH challenge test - it looks at your ability to release cortisol in response to the hormone.  That's the other part of the question - can your body supply cortisol when it's needed.
 
 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


CajunGrl
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Date Joined Mar 2009
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   Posted 4/10/2010 8:39 PM (GMT -6)   
I just want to remind everyone that Scorpio's LLMD is putting her on cortef. I understand that everyone is scared and has their own opinions, but I think she needs to listen to her Lyme Disease doctor. If she has low cortisol, it is very important to have that treated.

Agmaar- What do you mean by a "fast response"? Steroids take a bit to get into your system.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


+Lyme
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   Posted 4/10/2010 10:39 PM (GMT -6)   
Question: in considering a 'regular' Dr, is there no 'little pill' we can take for adrenals that is not a steroid--- ex: comparable to thyroid meds?

I am personally getting really sick of problems that can only be helped by alternative medicines!!!!!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


Agmaar
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Date Joined Jan 2009
Total Posts : 376
   Posted 4/10/2010 11:17 PM (GMT -6)   
I believe the endo was referring to people who were becoming Addisonian. He has seen people improve (feel better) in a few days.

Measuring cortisol is helpful but is only part of the evaluation. The other information that is needed is can your adrenals release cortisol in response to ACTH pituitary hormone. If your cortisol looks low, it still wouldn't be considered a problem if you can respond adequately to ACTH.

Best ref. i could find right now:

http://www.ehow.com/about_5572829_tests-adrenal-function.html see the acth tests

The test takes about 2 hrs. They draw a morning cortisol sample to get a baseline and then inject ACTH hormone. Blood is then drawn on about 1/2 intervals to see how the adrenals respond. IIRC they did 3 followup blood draws on half hour intervals.

Just an observation, but people come to these boards because they really would like to hear a variety of responses. IIRC Valerie had very severe mood swings/ anxiety and depression when she first came to these boards.
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


CajunGrl
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Date Joined Mar 2009
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   Posted 4/11/2010 8:00 AM (GMT -6)   
Agmaar,

Thank you for the explanation. I am sure that her doctor knows what tests and medication is best for her.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


scorpio1960
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Date Joined Jan 2009
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   Posted 4/11/2010 10:34 AM (GMT -6)   
I want to thank everyone for responding and apologize for not acknowledging each one individually. I've been in quite a bit of pain and my brain is not working too well...lol. I want to mention that these are things I've been dealing with all along and not new symptoms stirred up because of the cortef.

Anyway, I took 10 mg yesterday morning and today and will start taking the pm dose tomorrow after speaking to my doctor. I need to give his office a call tomorrow anyway about the joint/nerve pain in my legs that has come back. The pain came back after I stopped the iv's and has been getting progressively worse.

It's strange because on one hand I feel the need to defend my llmd's decision but on the other hand I can't help but question everything too...that's why I posted my original question and am so thankful for this forum and those kind enough to answer my posts! On my llmd's behalf, he is one of the founding members of ILADS and has been treating lyme disease since the 1970's. Of course that does not mean he has all the answers and he never professes to...that's one of the things I admire about him. The internist who is not affiliated with his office but has trained with various ILADS docs also recommended I give cortef a try. I'm sure they both have legit reasons even if I don't understand or remember what they are...lol! Both docs, especially the internist, try to take a holistic/natural approach when they believe it will work.

I'll make sure to let everyone know the outcome and if it helps at all with my energy levels. I agree that we are all different and respond differently. Sharing our stories and experiences is what keeps this forum going and what I appreciate so much. I just wish there wasn't so much trial and error when it comes to what we're dealing with. Unfortunately, when it comes to chronic lyme it seems nothing is clear cut.

Hope everyone is having a good day and enjoying the weekend.

ktp812
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Date Joined Jul 2007
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   Posted 4/11/2010 3:30 PM (GMT -6)   
I haven't been on here in a long time but had to reply to this post....DO not take the cortef for your adrenals. I was given cortef over 3 years ago after I had the saliva test. My levels were totally flat so the doctor put me on 20 mg daily.
 
I now suffer from adrenal supression and the endocrinologist is trying to wean me off the cortef. It has been a terrible nightmare trying to get off this stuff. She told me I never should have been on it and that only people that have Addison's Disease should be taking it long term. Just because our levels of cortisol are low is not Addison's Disease.
 
I have gone through H*** trying to get my dose down low enough to have the ACTH stim test. PLEASE before you start on the cortef have this test done. It will determine whether or not your adrenals can replensh after stress. They actually stress the adrenals out and see how quickly they recover. The endo said this test should have been done on me.
 
I know we all want to get relief from the horrendous fatigue but in the long run it will cause supression. I am very angry at the doctor who put me on this because I didn't know any better. Now I am suffering once again.
 
See if you can get some natural adrenal support..I wish I had done that.
 
It has taken me 6 months to cut down 5mg..I am still on 10mg and everytime I try to cut down another 2.5 I crash terribly.
 
Kim

ktp812
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Date Joined Jul 2007
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   Posted 4/11/2010 3:31 PM (GMT -6)   
I wanted to add that my levels were much lower than yours on the saliva testing and I still ended up with supression..

scorpio1960
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Date Joined Jan 2009
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   Posted 4/11/2010 3:51 PM (GMT -6)   
I will definitely speak to the internist tomorrow too. The last thing I need is more problems. Thanks for responding.

ktp812
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Date Joined Jul 2007
Total Posts : 715
   Posted 4/11/2010 5:53 PM (GMT -6)   
In my opinion the only person qualified to be handing out cortef is an endocrinologist.  I am not trying to scare or discourage anyone. I am just telling my story and what has happened to me.
Being on cortef for even more than a few weeks can cause supression and has to be tapered slowly. It is going to take me at least a year to get off.
 
Just make sure you have all the facts about the use...I don't even think Lyme doctors are qualified to be prescribing it. They should all stick to the abx etc and leave the endocrine system to the experts. I am not even in treatment anymore and it is my endo that is helping me through this.
 
Get the ACTH stim test if possilbe. It is the best test to know if you have an adrenal problem that needs treatment. Good Luck!
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