Your POTS symptoms are probably being caused by Lyme disease. In fact, I'm pretty sure that having Lyme disease precludes a diagnosis of POTS.
I know it's hard to find a good doc in Oregon, but this one sounds like she might accidentally run you into the ground.
Just... be cautious.
And don't take the steroids!
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
NO, NO, NO......
don't ever take steroids, period, nada, zilch, nein, ever....
you'll be much worse.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't believe there are any LLMD's in Oregon. Steroids suppress your immune system so taking them will cause your disease to get completely out of control. Don't do it!
Go to CA or WA for treatment.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
You CAN get away with small amounts of cortisol (2.5 is really small) esp while on antibiotics... but the fludro is another story in my opinion.
HOWEVER, if you continue treating the Lyme, the POTS will most likely resolve and not be a problem. How badly is it affecting you?
Another thing, I take cortisol for adrenal problems and I think it is one reason I have been unable to get candida/yeast under control. It's almost worse than the lyme.
So consider all of the above when deciding on this!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Oops! When I went to take the cortisol this morning I saw that is actually 7.5 mg.
These amounts sound low enough to be ok, however, I really don't know anything about steroids!
I think my dr put me on this stuff trying to improve my quality of life until I can get the Lyme under control.
I'm just confused about the whole situation.
Lymetoo- why do you say the Fludro is another story?? Good? Bad? I need some info here....
Posts: 265 | From Oregon | Registered: Aug 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
there is a website that's called askapatient.com.
they have a ton of information on drugs.
i always check it when taking stuff.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
PS-- You can get pretty good treatment in Oregon. There aren't alot of LLMD's but lots of great LLND's who have prescription rights in Oregon. All of my family is in CA and I have not felt like I need to go there for treatment at all.
Posts: 844 | From CA | Registered: Apr 2010
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posted
The fludrocortisone is pretty much just like prednisone. It's NOT good. I took it for awhile (POTS symptoms) and it made me so ravenously hungry that I couldn't stand it!! I told the dr .. NO WAY. It was just like taking prednisone. Been there, done that, unfortunately!!
Do not go down that path unless you simply can't get out of bed due to your symptoms.
Get treated for Lyme and BABESIA and you will be fine. I am sure that it was babesia causing my POTS symptoms.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Last year I had two steroid shots for leg pain. I became so sick for six months I could hardly get out of bed. I lost 75 pounds and some days could barely eat a saltine cracker. It was the worst 6 months of my life.
posted
I was on steroids for 6 months prior to my Lyme diagnosis, and they almost killed me. I am very lucky to have gotten off them when I did. I would get a second opinion if I were you. I live in Oregon too. PM me if you want a recommendation for another doctor.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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posted
I was taking prednisone (prescribed by an ENT for hearing loss) for a month before being diagnosed with Lyme.
Let me tell you, I fell so much worse!!!!!!
I started taking Doxy within a few days after the prednisone. I really believe that the prednisone set me back quite a bit, now I have a lot of "catching up" to do.
Bottom line: Do not take the steriods.
I am just suggesting this to you based on my experience and from what I have learned. My ID Dr., who finally diagnosed me with Lyme, even said that steriods is a big "no no".
Posts: 21 | From ohio | Registered: Jan 2011
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Fludrocortisone is also known as Florinef. It is called a mineralcorticoid. It acts more like the hormone Aldosterone (produced by the adrenals). It helps control electrolyte and water levels. It can raise blood pressure and is often prescribed for POTS.
Hydrocortisone is also known as Cortef. It is called a glucocorticoid. It acts like Cortisol in the body. It is commonly used to reduce inflammation, support metabolic functioning, and can suppress the immune system. This is what most people here think of when they hear the word "steroid". Prednisone is also considered a glucocorticoid.
Hope these things help you feel better sickandtired.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Thanks guys for all the comments and info. I will definitely be talking to my Dr. as soon as she gets back.
In the mean time I'm still a little confused. Because I am so so so fatigued right now that I can't really get out of bed. And when I am up I feel like I am going to faint.
So is it worth trying the steroids to see if I can get out of bed?
And what I hear most of you saying is that you were on steroids *before* lyme treatment. And that that was when you got so sick.
But has anybody been on them while you were on antibiotics? It seems like maybe this would make a little difference?
I don't know. I'm just so tired and feel dead.
Posts: 265 | From Oregon | Registered: Aug 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Both meds were prescribed to you at low doses, it sounds like your doctor is trying to support your adrenals. Many people here are taking adrenal supports with their antibiotics, some use cortef or herbs or glandular supplements. It is good that you are going to talk with your doctor to clarify why you were prescribed the meds. If you have adrenal insufficiency problems you might not feel better until you get the adrenals supported.
Posts: 5237 | From here | Registered: Nov 2007
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