posted
Before I call my LLMD I would like to get any information about the situation I'm in.
Due to several bloot cloting episodes and/or my autoimmune disorder, my body doesn't produce most of the hormones. So I need a replacement.
Right now I need to start Cortisone, Thyroid, Estogen, Progesterone and HGH. After a 2 day trial I feel HUGE difference, mostly after the Hydrocortisone (more energy, less pain, less fainting after standing up).
Due to severe nausea/vomitting I had to stop all my LD meds over a week ago. Now I'm afraid what will happen, when I start Zithromax, Omnicef, Mepron, Nystatin, Plaquenil, etc.
I heart how bad is to use stereoids while treating late stage LD. But my endocrynologist says, that not having Cortisone is life threatening.
My brain fog is so dense, I can't think. I would appreciate any input. Sorry if my information doesn't make sence.
Thank you.
Punkie
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Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hi Punkie,
I wonder does your endo doc know anything about lyme disease and the association of steroids on infections. Personally when I was misdiagnosed initially and given steroids and nsaids all my symptoms got worse. It was'nt until I got on antibiotics that I got any relief. I do remember however an initial lessening of my symptoms the first two weeks of any knew steroid or nsaid.Followed by increased symptoms and severity. With the exception of a couple that I had immediately bad reactions with. I personally will not take steroids or nsaids ever. Your symptoms have lessened so perhaps you don't have lyme. Is that possible?? I hope for you it is a hormonal imbalance and not lyme disease.
You and all of us are different and you may want to listen to your endo....but be careful. Monitor your symptoms carefully and keep a diary...........good luck..........zman
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[This message has been edited by lymie tony z (edited 20 June 2005).]
Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Punk, I'm on a low dose of Cortef and so far it hasn't hurt me. In fact, it has helped improve some symptoms. My LLMD is aware of this and approved it. He felt the low dose shouldn't be harmful, and based on my endo tests, is needed. What dose are you on?
posted
That is what I don't know. I have several LD tests positive, including live spirochete picture on Bradford microscope. I have all typical symptoms of LD and Babs.
As I was not treated for over 10 years, I had a blot clot which first got into my pituatery gland, next one cut bloot supply to Hypothalamus. My autoimune disease destroyed my adrenal glands. This disease is quite rare (cca 8,800 Americans have it) - Addison's disease is called Schmidt's syndrome if an underactive thyroid coexists with it. That is my case.
The symptoms of Addisonian crisis (which I'm right now in) is extremely low blood pressure (you can't get up without fainting), low blood glucose and extremely high potassium. I don't think these are LD or Babs symptoms, but I may be wrong.
Addison's disease is easy to diagnose when you recognise it can be the cause of the problem. My test is definitely positive.
My endo doc knows very little about LD/Babs, but is willing to talk to my LLMD once I get through this life threatening crisis.
He had never seen a case, when a patient didn't need a daily replacement of Cortisol and Aldosterone till the rest of their lifes. This really scares me, as I need to get rid of LD/Babs to have some life again.
Thank you for a realistic input into my problem.
Punkie
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Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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posted
Hi Lymelighter, That's a quite an encouragement. I'm working on lowering my dose to 20mg am and 10 mg pm as a maitenance dose, which needs to increased by doubling the amount by every grade of fever (2 more degrees means 80mg+40mg).
Right now I take 100mg during the first part of day in 20mg didvided doses and one 20mg dose at bed time.
After several days I can get up from bed and get to the bathroom without fainting. I also cut my pain meds in half.
Do you have the total deficiency of the hormones made in adrenal cortex, or do you need just a boost?
Do you or anyone you know need any additional hormone replacements? My medicine box is overflowing, but I don't know how to downsize.
Thank you for the support. Punkie
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Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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My LLMD treats endocrinopathies as part of treating Lyme, as it is all interrelated. Many of his patients are on Cortef, Florinef (aldosterone), human growth hormone, testosterone, progesterone, estriol, estradiol and DHEA.
It's drugs like Prednisone, Decadron, Solumedrol, etc. that are to be avoided if at all possible.
Hope you are feeling better soon.
Posts: 111 | From Tick Country | Registered: Jun 2004
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Lymelighter
Frequent Contributor (1K+ posts)
Member # 5310
posted
Punk, I have a deficiency of Cort & DHEA throughout the day. I take 1mg at breakfast, & 1 mg at dinner. The dose is specifically low as the endo spoke to the LLMD and wanted to err on the side of caution.
Prednisone, Depo Medrol, & Methylprednisolone are evil!
My LLMD treats endocrinopathies as part of treating Lyme, as it is all interrelated. Many of his patients are on Cortef, Florinef (aldosterone), human growth hormone, testosterone, progesterone, estriol, estradiol and DHEA.
Ditto here. I take all of the above, except florinef. I'm feeling tons better! I only take 10mg of cortef. You want to supplement, not overdo.
hydrocortisone is cortef......safe for lymies in low doses. Prednisone or cortisone is a whole new ball of wax.
posted
I would like to thank everyone to clear the issue. I'm glad to hear that other LD patients have a possitive experience while supplementing necessary hormones.
Can somebody explain me HGH therapy. My test showed <0.01pg/ml. Normal range in my lab is 0.05-4.7.
Does your insurance pays for it. Endo told me it's very expensive. What's the way to get it covered? How HGH helps your symptoms?
I appeciate any additional advice. Wishing happy days to all!!!! Punkie
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Posts: 89 | From Vail, Colorado | Registered: Mar 2004
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