Willowrose- question :)

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Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 1/1/2010 1:26 AM (GMT -7)   
Hey rose, i remember you mentioning using cortef or florinef for your low blood pressure- did they advise you on how to come off of that?
Did you have trouble with blood pressure upon standing? like when going from sitting to standing did your pressure drop? There are several conditions that go a long with lyme- NHM, POTS or orsthetic blood pressure-  did your LLMD ever tell you about any of this?
The reason i ask is b/c i don't want to stay on the florinef long term either- but when i skipped a dose yesterday, today made me really dizzy so my LLMD said to go ahead and take it that my body may not be ready to come off-
Did your LLMD prescribe your med or a cardio doc? There's a test that can be done by a cardio doc called a tilt table test to check for NHM- but i'm nervious to have it done just as i am nervious to have a stress test done and pass out!
I'd love to hear more about your experience - i think you said now you just drink more water with salt?
Thanks a ton!

I refuse to stay sick! Period. 

Veteran Member

Date Joined Oct 2009
Total Posts : 699
   Posted 1/1/2010 5:04 PM (GMT -7)   
Hi Finding - The cortef was prescribed by an endocrinologist. When I needed it most, it was impossible for me to go without. Yes, I would black out upon standing, but that could also happen without me moving at all. I was extremely fateagued, dizzy and lightheaded, too. The cortef alleviated my symptoms and gave me energy I hadn't had for years. One of the things my doctor suggested to help with both my low blood pressure and the irregular heartbeat was that I get back to exercising. At that time the Lyme symptoms weren't so bad and, though I was afraid, after a complete cardiology workup (where they also recommended more exercise) I started going to the gym regularly and slowly my bp got at least high enough that I did not need the cortef on a daily basis. I had to go very slowly since exercise is physically stressful, and I didn't want to cause a bigger problem. When I started, I was still on cortef, but was eventually able to wean off of it. I still have low bp, but now I control it by adding enough salt to my diet and making sure that I stay hydrated. Very important, though - I waited until my doctor suggested I try cutting down on the cortef dosage. At every juncture I was under medical supervision. I did not do this on my own. Also, to this day, I cannot undergo a physically stressful procedure, not even dental surgery (found out the hard way when we all agreed I could try it without a megadose of steroids and I spent the whole time fighting to maintain consciousness) without steroids. If you have adrenal fateague, cortef (or other steroid therapy) replaces the deficient cortisol your body would naturally produce. We need that to maintain bp and other functions during stressful physical occasions.

I don't know what florinef is - is that a steroid? Chances are that the dose you are taking is not high enough to seriously impact your immune system. If it is helping with your symptoms, then I think it is a good thing until your body is well enough to take over. The book I mentioned in a different thread is called Adrenal Fateague by James Wilson and Jonathan Wright. My LLMD recommended it to me. I ordered my copy from Amazon, used, and it was very inexpensive. I liked it because there were many dietary and holistic suggestions.

My LLMD told me Lyme can take down the adrenal glands and he thinks this is what happened to me. It is encouraging to see that my endocrinology tests indicate my function is a little better now than it once was. To me this means the Lyme treatments and the dietary and holistic things I am doing are working. Good luck with this; I hope my response was of some help, and if you have any more questions, please ask.

I have Lyme; it doesn't have me.

Regular Member

Date Joined Oct 2009
Total Posts : 289
   Posted 1/2/2010 2:14 PM (GMT -7)   
Hey rose, thank you so much for sharing that with me. I have had an ekg but i guess i still need to buck up and do the stress test- just afraid i might pass out- but i guess it's necessary.

the florinef is a steriod like cortef- i was only prescribed .1mg so yes, it's a small dosage. I dont want to be on it long term either though i've heard some people are. some lyme folks have been on it for years. anyway, i suppose if my heart checks out fine the exercise will be a great idea.

I did do a cortisol test- blood test- but it was at the wrong time of day according to my LLMD- it needs to be done in the am and should be a saliva test. i'm also interested in seeing what he thinks i should take to support my adrenals- i found something by enzymatic- adrenal stress end- but don't want to take it yet till i know.

i feel like much of this mess has been all on my own- we just don't have the money for me to be checked and checked, and not to mention if i say "lyme" half the time docs don't really want to work with me. i'm even questioning the results my nephrologist faxed me- seems like a quick way to get me out of his office- 1 test that doesn't show protein and he's done with me.

for all i know the low blood pressure could be a sign of heart trouble- which could explain the protein in the urine thing- there are just too many possibilites and i don't understand why i have to be going through this right now.

I seriously need a little assistance with getting the kids checked out and still taking care of myself. we haven't even started on my son and he's walking around holding his tummy all the time- god knows what that means or how his little organs are doing with everything.

i'm so tired...i feel worthless for letting all this happen to my little family- and this all too much to be posting here. I just wish God would intervene a little bit and send some help. i'm too young to do this alone. i'm too scared. i dont want my family to be another "statistic". i don't want this to have a sad ending.

okay, i'm going on and on again.
I refuse to stay sick! Period. 

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