What It's Like to Be On 60mg of Pred... High Cortisol Hell

I think everyone (even some of those crazy hormone replacement doctors) would agree that 60mg of Prednisone is over replacement and is a pharmacological dose. 60mg of Prednisone is the equivalent of about 240mg of HC. I have never been on this much steroid before in my entire life. Add in that 10mg Decadron injection (about 600mg HC equivalent) and I am swimming in cortisol right now. This post is meant for those who are having trouble figuring out their current HC dose. However do not take anything I say as medical advice and before making any changes to your current medicines, be sure to bring it up with your doctor. Dosage changes in those with adrenal insufficiency is serious business and you should not be making changes based upon what someone says on a blog or forum.

Hives Got REAL Bad, REAL Quick

Hives from heavy metal chelation

Author's Edit Jan 2015: This post still gets hits from google, so I wanted to let everyone know who is reading this that I no longer chelate and completely gave up on it all after multiple episodes of dangerous hives.  

Yesterday the hives got really bad. Like I thought my life was in jeopardy because I started to have trouble swallowing and speaking. I went to the urgent care and was given a mega dose of Decadron (Dexamethasone) and told to take high doses of Prednisone for the next 15 days. Part of me was really worried about all of this and the injection, but I had little to no choice. My throat was starting to swell up on me and I was scared to go to sleep like that. Benedryl, zyrtec and some other type of antihistamine had no affect on the hives and I was freaking out.

Hives Are Not Fungal or Yeast

Now that I have been on the Diflucan and the hives have returned again (after stopping DMPS round), I think I can assume it is not from a fungal or yeast overgrowth. Right now they are not too bad, but we will see how the next few days go. I'm thinking longer rounds are the way to go for me since I have no symptoms while on round and the hives only start 2-3 days after I stop. Could it be metals resettling?  I will never really know.

One weird thing I have noticed is in some areas of my body, my skin looks shiny. I have no idea what that is about. Maybe I'll try to take a picture, but I have a feeling it won't show up on my old camera.

Round 4: DMPS Complete

Yesterday I finished up round 4 of DMPS and I feel good. No hives! haha Once I get some more money, I'll get another month's worth filled and just keep going.

My vision is definitely different right now. I think one of my contacts may now be too strong for me. It is odd as I am not seeing the same out of both eyes and at times I think it may be giving me a slight dull headache. I've been wearing my glasses more because I don't tend to notice it as much. My left eye is -5.25 and my right eye is -5.75. I'm thinking the left eye may be too strong and I'll have to dig around to see if I have an old contact somewhere that is -5.00. If I had extra money lying around, I'd go to the eye doctor. I am actually due for a new exam (just got the reminder card in the mail!), but since I don't have the extra money I will just keep wearing these contacts for now.

On my off days I make sure to replenish my nutrients and minerals. The one multi-vitamin that was not giving me heart palpitations has gluten in it. AHH! I cannot win, so I am trying to take individual minerals. Taking all of these pills can get quite annoying at times.

Rant About Hydrocortisone Use in Adrenal Fatigue Patients

Hydrocortisone Use in Adrenal Fatigue: Is it really as good as "they" say?

Today I have decided to rant about using hydrocortisone in those with adrenal fatigue, CFS and any of those non-descriptive syndromes or illnesses.

I have finally had enough of the nonsense and need to speak my mind.

When I started this blog, I was very naive and had no idea what I was getting myself into. When I did research about adrenal fatigue, all of the websites made it seem so easy. Just take some "adrenal support" and you'll be bouncing back like new in no time. Yippee!  I can tell you first hand, they were quite WRONG. Over the years I have realized that these websites paint a very happy, cheerful journey, but in reality it is a long painful journey. They may not willingly know, but they have started a very scary movement of people, telling most to skip going to endos and simply seek a natural doctor who is willing to prescribe HC. Some of them even suggest self-treatment, which is a whole other topic.

Round 4: DMPS Begins

The hives are gone and I decided to start up on the DMPS again. This will be another 3 day round and then after this, I may take a slight break. I will be out of pills and will need to get the money together to order more.

I have had no improvements with the POTS, but my vision is definitely more clear. It is actually freaking me out a bit. In all of my years of life, my vision has never gotten better. Every 6 months I usually have to go back to the eye doctor and get a stronger prescription. About 2 months ago I started to notice my vision was losing its crispness and figured it was only a matter time until I would be heading in again.

Then one day out of no where I realized how amazing the trees and stones looked. I figured I was just going crazy or imaging things, but now it's been a few weeks and it has stayed. The glasses I use around the house are an old prescription. Before I could NOT drive with these on as road signs are blurry and I would not trust myself at all. Yesterday I tagged along to the post office was commenting over and over again how well I was seeing out of the glasses.

We will see if this continues. If my prescription has gone down, I will be speechless--as would my eye doctor.

Hives Have Calmed Down

The hives are better.  The skin is still discolored where they were, but I'm not feeling itchy.  Thank goodness.

I'll probably start chelating again tomorrow.  I just want to give it another day.  I am still taking the Diflucan and will continue to do so.  It will be interesting to see if the hives come back.  Did the Benedryl or the Diflucan help?  I won't really know unless the hives show up again.

Update: Later in the day I had some more hives show up around my neck.  Still keeping an eye on this.

Diflucan: Will It Stop This?

I woke up and immediately called my doctor and the message on his machine scared the hell out of me.  It said he was going to be out of the office for a whole week.  I nearly vomited when I heard this, but decided to leave a message any way.   Thankfully I got a call from one of the receptionists/secretaries and she said she would contact the doctor and get back to me.  I told her she was a lifesaver and was extremely thankful for this because the hives are getting to the point where I might have to see an urgent care soon for high dose predisone. 

Hives on neck-Monday night

I got a call back a few hours later and my doctor agreed to have me try Diflucan.  Since the hives are not responding to zyrtec, he thought it was a very good idea.  I told her (the secretary) that this is my last attempt before I give in and go on prednisone.  The hives are really getting that bad.   This picture above is quite tame compared to the hives on my torso and lower abdomen, which you can see below.   

So itchy!

As soon as I got word it was available at the pharmacy, we ran over there.  I got the prescription and took my first one in the car. haha  Now I wait and see what happens. I don't expect miracles because I may have already reached the point of no return.   I don't want to go on high dose prednisone.  I'm going to be out of my mind if I have to though and that scares me.  I might need to buy a cage for my husband to lock me in...lol J/K!!!  I really do not do well at all on large steroid doses...

Fingers crossed this works.  I am not starting my round today obviously.  I was due to start back up again, but I need to get these hives under control first.

And It Begins...Hives

Tonight out of the blue, with no other symptoms or issues I started to get hives everywhere.  I do not know what to do now.  DMSA and DMPS now both are causing hives?  Here's the weird thing though...I am not on round.  I quit late Thursday night, so it has been 3 days.

Terrible Itchy Hives on Neck and Scalp

Very large, hard hives near elbow

The hives were out of hand, so I took a zyrtec.  I got some nice picture of the hives, so all of you can see what I go through now.  I've got no idea what to do.  The only things you can use to chelate cause me severe distress.  I still find it odd that it took 3 rounds for it to show up.

Well I have to let this all soak in and see what I want to do from here.  To say I am frustrated is a huge understatement.

Update: I woke up Monday morning and the hives are still here.   Wow!  I'm thinking this must be a candida/fungus flare up or some type.  I also have tinea versicolor on my neck now and it is starting on my chest.  You can see a spot of it (if you know what you are looking for) in the picture of my neck.  I'm not sure what to do, but studies I've read suggest taking Diflucan to control the fungus.  We will see what I want to do because I did not really want to do that right now.  Blah...never dull when chelating!

Update 2: It is now Monday night I see no end with these hives.  Zyrtec surprisingly isn't working.  I don't know whether it is because my Zyrtec is 1 year past expiration (haha) or if these hives are just not responding.  Ugh I really did not want to go on an anti-fungal, but I might have to give it a shot to see if it clears up.

Round 3: DMPS Complete

I am happy to say round 3 of DMPS is complete and I don't feel any symptoms still. As a reminder, I am taking 50mg of DMPS every 8 hours for 3 days.  I don't know if I should be happy, worried or content.  haha Is it doing anything?  I should I be feeling something to know it is working?

I am not the type of person who has placebo effects...Today I felt like my vision was more clear like I got a new contact prescription.  It was not particularly bright or sunny, so I don't think it had anything to do with lighting.  We'll see in the next few days if this sticks around of if I am just imagining things.   :)  As we were driving around, I could see every twig and stick on trees.  The rocks on the ground were more defined and it was just amazing overall.  The floaters are still there, but the actual vision felt like it was better than 20/20.  It was incredible.

That is all for now.  I'm still working on getting my thoughts together for Part 2 of the Lyme discussion.