Lyme questions

[nspiker]

Here's a thread from lymenet on Cortef.  There's a lot of info on lhttp://www.ymenet.org if you search adrenal fatigue or cortef.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91649?#000000

[hopefulmama]

Thank you all so much for the information.  Nancy, I really appreciate the info on the Biomatrix Support and I will ask Dr. F this week if there is any reason it would be contraindicated for me.  At Dr. Y's office yesterday I was told to avoid all antioxidants including A, C and E during the provocation period so I guess that would include the adrenal support.  But there has to be some flex room in here for the Addison's problem, which I believe may be just as critical or more critical to address than the Lyme.

T, thank you so much for your post about Addison's and your great advice about the testing for renin and aldosterone.  It meant a lot to me and was full of really great information that I have written down in the notebook I am now keeping about how to manage all of the abx, vitamins, diet, exercise, etc.  Would you mind sending me a PM with the name of the endocrinologist in Ca that you see?  We live in Ca (southern, but I can travel) and I would love to know of an endo who understands what I am dealing with.  I now have an appt in SF next month with an endo recommended by Dr. H's office – wonder if it is the same person!

The main thing that has come out of this so far for me is an unsettled feeling about the LLMD office in my town (Nancy, I know you have had really good feelings about them) based on the response of the dr today who said quite frankly she had no idea how to treat this new wrinkle, no knowledge of an endo in our city who might be able to help, and that since Dr. Y is on vacation for the next few weeks she would “write it in the chart” and I should just wait.  I don't think waiting is a great idea when it comes to Addison's… and also it concerns me that she knew so little about adrenal involvement in Lyme.  I am being drawn more and more toward getting all treatment in the Bay Area.  Just don't have a clue how we will afford it or how I will get up there so often. 

Hubby and I are going to sit down now and watch “Under Our Skin” loaned to me yesterday by Dr. Y's office.  He is starting to take all of this seriously now, and that helps a ton.  All day he has been telling me to lay down and rest.  🙂 

You are all quickly becoming family to me.  I am so grateful for your help and your patience with my many questions and worries.  It is thanks to you that I keep looking for the light at the end of the tunnel, even though it is still very hard to see.  Thank you so much.

The best thing that has happened to me today, other than this amazing board, is that a local health spa just agreed to give me unlimited access to their infrared sauna for a reduced price.  They typically charge over $20 for 20 minutes in the sauna.  We cannot afford to buy a sauna and it is so kind of them to let me negotiate a better rate so that I can focus on healing.  Some people in the world just have good hearts and angels wings, and I feel blessed to have met so many of you recently. 

Good night and much love.  Hope you are each healing wonderfully even at this moment!
Andrea

[Kim]

Andrea,

It is totally understandable that you are freaking out with all this “bad” news and not knowing which doctor to trust and manage your case.  Join the club. :doh:  The answer for me was I had to manage my case with the help of some very experienced doctors.  Even with excellent doctors I still studied the meds, the doses, etc., and paid attention to which abx had an effect and which ones didn't. 

Everyone I know of with Lyme has had major endocrinologic disruptions, I sure did.  They are still not optimal, but definitely improved with abx treatment.  Your body is fighting a major infection and nothing is working normally right now.

Hang in there, you're doing a great job in moving forward.

Take care…..kim

[Kim]

Hi pinkhorses (love your user name :)), and welcome to the Roadback forum.

Thank you for a very informative post on adrenal crisis.  There's nothing like advice from someone who's been there, so thanks for sharing.

Take care…..kim

[nspiker]

Andrea,

I'm surprised Dr. Y's office was unfamiliar with adrenal fatigue, because they have tests on hand, and had me take a saliva cortisol test to see if my adrenals were working.  Adrenal fatigue and endocrine problems come up all the time with lyme. 

How did you frame the question about Addisons?  Could it be that she thought you were talking about prednisone, and not cortef?  They have to be familiar with adrenal, thyroid and all of the endocrine problems that present with lyme.  If it were me, I would push to get an answer, or some help.  It doesn't make sense that she has no answers for you or recommendations when the doctor is on vacation. 

If you decide to stay with this doctor, I would definitely get in to see Dr. Y.  Her PA is knowledgeable, but Dr. Y. is the one with the depth of experience.   

Sorry you were left to figure this out for yourself :doh:.  Like Kim said, that is often the case with this disease.  There's a lot to learn, and you get answers from all the different doctors and resources possible.  You become an expert on your own health, what works for you, and what doesn't…..

nancy

[pinkhorses]

Kim- My daughter loves horses and she loves the color pink, so my screen name is courtesy of my 8 year old.

Nancy- That is a great thread on Lyme.net,  I have gotten some good info.  Thanks.

Andrea- After horrible reactions to Imuran, Cellcept and other convetional treatments, I am trying to put my fear aside, and hoping for the best. 

Next year we will be posting about how great we feel, but we will be typing fast so we can get back to having fun.:D

I am so impressed by the information and support offered here, thanks to evereyone who is willing to share their experience for the greater benefit. 

T

[Cheryl F]

[user=2489]pinkhorses[/user] wrote:

This is my first post, I am a little shy but I do have some info that might be helpful to you.  

I live in the midwest and I fly to California to see my endo. 

Pinkhorses:

Welcome to the RBFBB, your first post was first rate helpful, and most likely helpful to others in addition to Andrea.

I am in California and would love a recommendation of a good endo.  The endo I have says everything looks find, but my AP doc computes a ratio for thyroid function, he says “4” is good, “8” is about what people with Chronic fatigue have, mine was 16.  The regular endo's just don't seem to be able to diagnosed clinically.  Please send me a PM with your doctor's name, I would be most grateful.

My daugther also liked horses when she was young (five to be exact), but she liked black horses, and because horses actually do come in that color, of course, that is what she got for Christmas.  His name is Magic and he hasn't been riden now for years, but we see him and talk to him everyday.  Horses are very cool.

Again, welcome, we are glad you are here.

Cheryl

[Author]

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