Can anyone share info on adrenal supplementation? This would be secondary adrenal insufficiency, not primary (Addison's). Due to yeast infection, leaky gut, food allergies chain of events, probably, although her now negative Lyme tests don't necessarly rule out Lyme. But abx plus diabetes also probably caused the situation, so Lyme treatment is not a good idea right now anyway.

From researching, it looks like hydorcortisone will probably be used. I am esp. interested in making sure that supplementation won't further shut dwn adrenal function. Did you alternate days, or take for two and then take the third day off? Did you take anything else? Did you successfully get off supplementation at some point?

Anything else you can tell me? I am seriously lacking in trust w/doctors right now, esp. since I asked her endocrinologist to test her glands in April 2004! The main doctor handling this is excellent, however.

She is extremely weak and fatigued and deteriorating quickly. She also has diahhrea several times a day and it appears that she is unable to eat most foods or take most meds. She is still swollen with fluid, which fluctuates, and causes ppurple stretch marks all over her body.

Is she still going to the Marino center, Dr. B? How did she make out on that fluid diet?

I am glad the Cortef is giving you a boost w/out problems. Are you seeing the same Dr. B?

The next challenge, whenever she is upt to it, will be done w/extreme caution and Dr. B. gave her trisalts and buffered vit. C to take to retard reactions.

Anyway, it is hard to know what is the chicken and what is the egg, but the information about thedramatic cortisol problems is very helpful.

He does think she'll be a lot better in 9-12 months. Continued better health to you!

The fluid diet really helped, as I posted a month ago...but when she drank milk as a challenge, things deteriorated again. I can't believe I'm even writing this, because I would not have believed it a while ago.

And according to Hertoghe the body handles supplementation with short-acting adrenal support like Cortef (hydrocortisone) very well in doses of up to 40 mg without losing its own ability to produce cortisone. His research also indicates that such adrenal support, correctly used, assists immune function.

Hertoghe's focus is on anti-aging, but you might find him helpful for your situation. His book is the HORMONE SOLUTION.

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Originally posted by Lyddie:

Are you seeing the same Dr. B?

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Yes, I'm seeing Dr. B & G @Marino. Dr. B. at the Marino Center, and they are both Godsends, and a rare breed.

Great place to do metals detox in combo with my LLMD. They are very Lyme friendly, open minded and tolerant.

I hope your daughter makes progress and feels better.

The kids' LLMD said our bodies absorb 1/2 of the oral Cortef taken.

I have the book "The Hormone Solution". Let me know if you want it, I can mail it to you.

I also have a few sheets of notes from their LLMD about hormones. I could fax or mail them if you are interested.

We are at the same place with Jordan and school. He will start as a homebound student. Jake did graduate in June but is too ill to do anything else right now.

My cortisol level dropped precipitously last month. My endo prescribed 5mgs. I haven't picked it up from the pharmacy yet...awaiting a chat with my LLMD to see if it's OK...

Your posts have helped me feel better about this one...
Thanks!

Some people write about doing alternate days, or doing a larger every third day .

I also was wondering if the hydorcortisone or other steroid would exacerbate Lyme if used in this way.

I think I'll just relax about this since my daughter finally has some good doctors. Breathwork, let us know what your LLMD says...5mg doesn't sound too high. PAB what doses do your sons take?

Foggy, thank you for your kind words about the Center and MD's. Dr. B. is working with "his colleagues" on my daughter's case, since it is so complicated. This is refreshing! He calls me (unusual in itself) to talk and always says "I'll be meeting with my colleagues about this"). I'm glad you are also going there. It is healing for my spirit, and my daughter's, to feel safe and heard after everything we have gone through this year.

My daughter just played in a band concert outdoors that she has been working on all summer. It was at 7pm. She had diahhrea 8 times today, and didn't know if she would be able to do it, and her blood sugar at the concert was aroud 250 from the adrenal overcompensating (this happens every pm). But she played beautifully and looked so happy to have done it!

Because she is low cortisol in the am she has trouble doing much, but it goes high at a certain point in the pm. She feels anxious and "buzzy" as if her blood sugar is low. This is getting dangerous, as she can't tell now when she actually IS low!

PAB, have you heard of any connection between the headaches/fluid and the adrenal gland in your boys (or the pituitary, which is connected)? It is interesting that our kids have both in common.

I'm rambling- going to bed- thanks all!

I have a call into Dr. S....but he doesn't return calls often...usually makes me wait til the next appt unless I say that I am desperately in need....I can appreciate his work load.....and he does return calls when it's a moment of desperation...

We shall see!

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Originally posted by Lyddie:
.... both the urine and salive tests showed very low cortisol

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Did the endocrinologist do a blood test for cortisol first, before the urine and saliva.

My endocrinologist summarily dismissed my GSDL saliva results (ok in AM, very low later on) that a homeopathic doc did earlier.

No mention was made of a urine test, so I am wondering if your doc first found the blood test abnormal, before doing the others?

Anyway, he prescribed Florinef (among other things) for my pituitary/adrenal problems and my lyme symptoms got better even before I started taking antibiotics.

Will be thinking of you . . . these things can be quite difficult to sort through.

These are not "mainstream tests," from what I can tell. The labs are all out-of-state and I shipped the specimens out myself, as I was instructed.

Since these were so abnormal (8 of 8 of the adrenal steroids are extremely low) he next ordered the ACTH stimulation test, which I gather is in fact used by "mainstream" endocrinologists. This was also very abnormal, although I don't yet have the details.

This test locates the source of the problem, which could be the adrenal glands, the pituitary which controls them, or the hypothalamus which controls the pituitary, as I understand it.

I will know more Wed. about all this.

I looked over the records from my daughter's endocrinologist, who has handled her diabetes for 11 years. For 18 months, I have been asking him to look into "something wrong with her glands" (I mentioned pituitary and thryoid specifically in one letter) but he kept saying "It's just the Lyme" and "there's nothing we can do."

In 2003 I see that he did do a one-time blood test for cortisol levels, which must be what you are referring to. This was normal, but since it was taken in the morning I am not surprised (her blood sugars are good clues to cortisol levels, and at that time ran high in the am).

But in the 18 months that she has been exhausted, sick, unable to eat, but gaining 30 lbs. on little food and extremely swollen w/fluid, he hasn't tested any glands except thryoid March 2004.

I think looking for an endocrinologist who specializes in pituitiary/adrenal stuff is a great idea, Biting Back. The endo we have been using is good w/diabetes and maybe growth problems.

The attitude that it's all "just Lyme", while seemingly tolerant, has been kind of damaging because he seems to use it as an excuse to do nothing.

Medications have been a focus of a lot of my questions. I still feel that certain medications contributed to this situation. The combination of diabetes and other issues has made things very complicated.

But, yes, he used that one blood test to blow off the adrenal possibility...and kept telling me he had done enought testing on her glandular functions, even recently.
Despite the fact that his notes are full of references to her extreme fatigue, for which he suggested....yoga!

The kindly Dr. B, who yes, does return phone calls, and doesn't charge for the privalige, did the "homeopathic" tests and discovered my Cort peaks & valleys during the day. The Cortef has helped the fluid issue, and is a "physiologic" dose, unlike the other steroids that can reek havoc in a Lymie.

I also agree with your point that sometimes, it may not be just Lyme. Hence why an MD. Like Dr. B & Dr. G, who are metal literate, are a good adjunct to a LLMD.

I am glad you found a good MD like Dr. B.
Stick with him! Hope things go well today.