Topic: Back From Hospital....Lyme triggered Addisons Disease
kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Hey,
Well I have spent the last 18/21 days in 2 different hospitals trying to figure out what was wrong with me.
I had my PICC removed and was having sharp pains, shortness of breath, and really bad fatigue and dizziness.
I just got home today from the hospital my Lyme doc has rights to and we found an answer.
Apparently since I have Chronic Lyme,Bart,Babs, and Mycoplasma it had caused some serious brain problems.
My SPECT scan came back Moderate-Severe.... He ran some blood and after many days found out my pituatary gland was all messed up from the Lyme.
He finally came back and told me that the pituatary gland is not getting the Cortisol to your Adrenal Glands.
This all turned out true.... He injected some Cortisol in me and my blood came back in range.
2 days later he took blood again and it dropped very low again.
He made the diagnosis of Addisons Disease.
Well on a positive note while being at the hospital I had my port put in so I killed two birds with one stone.
First the Lyme then the 3 Co's and now another freakin disease!
All I have to say is THANKS LYME DISEASE!!!!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Bless you Kreynolds. I am glad it was not all heart
related. I bet he was thrilled to get to inject you
with Cortisol. Something Doctors rarely get to do.
LOL You are special.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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bettyg
Unregistered
posted
roy, katie sprung you from the hospital ... good for all of you!
i was reading your story daily; wow, you've been thru the mill with all this unlimited crap!
others here do have ADDISON'S as well. yes, glad it was NOT HEART related.
you/family have been in my thoughts/prayers ever since you 1st went in. WELCOME BACK FRIEND!
thank you also for the nice notes you placed on my posts during my recent vacation returning late last night.
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Yea I was a test rat in the hospital.
I am glad that the doc admitted the Addisons was from the Lyme, because it is....
Thanks to all who responded.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hey there, just wanted to say that I'm sorry you have Addison's too.
On a positive note - finding out about Addison's and getting proper treatment will help you get better faster.
It's made a huge difference in my Lyme recovery, so I'm strangely grateful for it.
You might think about getting a medic alert bracelet for the Addison's - not sure if your doc spoke to you about that, but it could be a good idea.
Glad you're out of the hospital, and hoping you feel better and better.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Yes I will be getting a medic alert bracelet..
It will have Addisons Disease and CHRONIC Lyme Disease on it.
I have heard mixed results about the treatment of Addisons effecting Lyme.
They say not to take steriod/hydrocortisone with Lyme, but I have to treat both.....
I still feel that I have some strange problem with my heart.
I know I have Mitral Vale Regurgitation, but they couldn't find anything else.
After the 3rd day of being there the nurses thought I was a joke.... they couldn't get me out of there faster.
The pain is bad and was bad in my heart... they had to give me IV Diludid to ease it every three hours.
Then two days before coming home they STOPPED it! and put me on Oral which did nothing.
There was a point in the hospital where I could barely walk and still have trouble and have to use a cane.
Such is life........
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry to hear that you have another problem to deal with but I'm glad to hear that at least part of the mystery is solved.
I hope treatment helps a bunch and you can start enjoying your life.
Makes me mad to hear that the nurses thought you were a joke. I hope they never have to find out first hand just what a horrible "joke" this illness can be.
Keeping you and your family in my prayers.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Sorry, but happy for you.
I also was diagnosed with Addison's, and low dose hydrocortizone made a big difference in my recovery.
I am almost off my Cortef now, with successful lyme treatment.
Simple bonus, people will take your illness more seriously when you wear a bracelet. A "doctor's note" somehow makes it more real for people.
-------------------- 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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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Thanks for the replies... The bracelet was ordered.
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
roy
glad you got your bracelet ordered!
are you allergic to anything? that should be on there too!!
sorry you got inconsiderate nurses instead of COMPASSIONATE ones! my best to you and kate...
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
bettyg:
Yes I put it on there. Vancomycin,Rocephin, Reglan and Psuedoephedrine.
Thanks for your support! That hospital stay made it hard for me to keep my mouth shut!
Yelled at a few nurses and doc's, but what can you do? They think they know everything!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Glad to hear you ordered your bracelet and got all the info on there!
Yes, the hydrocortisone is a conundrum with Lyme... but my LLMD feels that it is okay since it basically the dose that your body would be making - if it were working correctly.
Does that make sense? Maybe it will make you feel a bit better.
Are you only taking hydrocortisone, or also using fludricortisone?
I started out with hydrocortisone only, and after an addison's crisis we had to add fludricortisone.
It has helped my POTS symptoms tremendously - and a lot of the heart stuff seems to have settled down as well.
The heart-type symptoms seemed to be related to the dysautonomia in some way, and since the fludricortisone addresses that as well as the Addison's...
Well, it all seems to have combined to be very helpful overall.
Again, I'm sorry you've joined the Addison's crowd, but at least it is one more piece of the puzzle you need so you can address everything and get well.
Feel free to pm about the Addison's, if you need anything.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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I wonder if I could possibly have Addison's-it is something I am going to check in to...
I also need to get a bracelet-it is something I have meant to do since I have a mechanical valve in my heart.
Man those nurses suck-sorry for language, but it is the truth-I have been there so many times, and they treat you like you are crazy...when you are so apparantly sick!!!
Keep in touch and feel free to contact me anytime-Hope Katie is doing ok through all this and the little one too!!!
Posts: 303 | From Jekyll Island, GA | Registered: Sep 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
Cactus:
I am only on Hydrocortosone. My heart is killing me though.
Could Addisons Disease make my heart hurt? Also my blood pressure at the hospital topped out at 160/100.
I'm 23 and have always had 120/80 even with Lyme. Just curious if something else besides the Addisons Disease is going on....
Thanks for the info!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
astriapage:
Thank you for all your help! My heart is still killing me.
The reason I have Addisons Disease is because the Lyme damaged my Pituitary Gland in my brain.
Therefore not secreting the ACTH levels to my Adrenal Glands.
I don't know... Just know my heart is hurting!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
I haven't checked in here in a long time, but I had to respond to this.
I believe my Lyme triggered my Addison's Disease, though I haven't found a doctor to confirm this.
Once I started on hydrocortisone, I was finally able to get rid of my Lyme symptoms, and I feel great now. I hope this happens to you.
Posts: 39 | From Massachusetts | Registered: Jul 2006
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
ssmillik:
Yes I am SO glad my doc made that clear! Glad to hear that you are feeling great!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
roy, so glad you gave them a piece of your mind and then some!
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
bettyg:
They needed it!!! I don't allow stupidity when it comes to my health!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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