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    Old 06-08-2007, 05:45 PM   #16
    sarah92202
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    Re: Sarah....

    Kim, glad to hear from you! Wow, 97 degrees, that's hotter than it is here. Ever since I started taking the Cortef I have been hot. I am usually cold all the time, I would wear sweaters in stores and restaurants all year long, now I am hot everywhere I go. It is so different for me, but not a good thing down here. My husband put up a ceiling fan in our kitchen 2 days ago, because I am dying when I cook. I have the air on 74 and still too hot. he says it's freezing in the house. I guess this is a good sign though, no more freezing my butt off all the time. I started taking the DHEA today. I had it compounded, it only cost me $28.00 for 100 pills. The endo told me to take one at 7am and one at 4pm, they are 5mg each. we will see what happens. I'm just to the point that I want to feel better, I can't keep going on feeling so bad. And my hair is falling out in handfuls, my endo said that not only can the Lyme cause this but low DHEA can too. Have a good day tomorrow, are you by the beach? I have been to Charlotte, but not the coast, it is such a beautiful city. I would love to go to Lowes Motor Speedway and watch a Nascar race. Talk to you later, Sarah

     
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    Old 06-10-2007, 05:43 AM   #17
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    Re: Sarah....

    Sarah,

    I wanted to ask you what symptoms you had with your adrenal glands being out of whack? I think this is where my exhaustion is coming from but I've been too tired to even go in to have it checked. I'm just wondering if you went through the same thing I am going through. I talked to my cousin the other day and she told me her good friend had the same symptoms as me and it turned out to be Addison's Disease. That is very scary. I sure hope I don't have that.

    Chantel

     
    Old 06-10-2007, 05:49 AM   #18
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    Re: Sarah....

    Kim,

    I'm sorry you are held up in the hotel room but I'm so glad you got to see your sons. I hope your doctor gives you something for your dry eyes because I know exactly howyou feel. I can't sit through a movie because of the dryness. It's so irritating sometimes. I have to pop in a few eye drops to be able to watch the whole thing. I posted to you about those eye drops and noticed I spelled the name wrong. It's spelt Naphcon and it works pretty good...atleast to get me through the day. I take a GI cocktail for my stomach too that makes my eyes and throat really dry so I have to be careful. The nurse from my stomach doctor's office told me that after I had already ran all of those other tests. It actually went away for a while and is now back. It's got to be the Lyme!

    Chantel

     
    Old 06-10-2007, 05:52 AM   #19
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    Re: Sarah....

    Quote:
    Originally Posted by sarah92202 View Post
    Kim, glad that you were able to go see your son's, but sorry you couldn't go out with them. It will get better. You said the doc's tested for sjorgren's. It can cause sore throat, and definately the dry eyes, but many other things can cause those symptoms too. You're not having problems with dry mouth too are you. I know the rheumi's will give you a few crackers and tell you to chew them up and swallow without any water, and if you don't produce enough saliva to complete this task they will look into sjorgren's. Yes, I have been through that too. I found out it was the Elavil that was causing my dry mouth, but with a positive ANA they looked into everything multiple times, except LYME! I hope you have a good time, try not to exhaust yourself too much. Sarah
    Sarah,

    I had a positive ANA last year when all of this started. I had elevated liver enzymes at the time so they thought I had auto immune hepatitis which is not the same as the normal hepatitis which I was tested for and it came back negative. Boy was that scary! I didn't have any of the symptoms though which told me there was something else going on.

    Have you ever re-tested your ANA? I did twice already and it has been negative both times. Weird huh? I've read though that healthy people can have a positive ANA and have nothing wrong with them so it's not really reliable.

    Chantel

     
    Old 06-10-2007, 02:15 PM   #20
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    Re: Sarah....

    Quote:
    Originally Posted by Chantel2003 View Post
    Sarah,

    I wanted to ask you what symptoms you had with your adrenal glands being out of whack? I think this is where my exhaustion is coming from but I've been too tired to even go in to have it checked. I'm just wondering if you went through the same thing I am going through. I talked to my cousin the other day and she told me her good friend had the same symptoms as me and it turned out to be Addison's Disease. That is very scary. I sure hope I don't have that.

    Chantel
    Chantel, Hi Lyme can play havoc with the adrenals and the thyroid. I was diagnosed with AI 4 years ago, before I got the lyme diag. I was looking through books at the bookstore trying to figure out what was wrong with me and found this book "Adrenal Fatigue The 21st Century Stress Syndrome" By James Wilson. I started looking through it and I had just about every symptom, and the fatigue patterns fit perfectly. I talked to my doc about it and he ordered the cortisol tests. 4 years ago I was significantly low, producing about half. Now I produce less than a forth, and my DHEA is very low also. I know that having the Lyme for so long untreated has caused all these problems, but dealing with the AI is a whole nother thing. Steroids are used to treat it, and we are not suppose to take steriods, but like in Kim and I's position our adrenals are functioning so poorly we cannot get better unless we take the steroids, it gets to the point were the benefits outway the risks. Do you have an Endocronologist? You need to see one and talk to him/her about testing for AI. You can go on the Addison's board and look at the symptoms too. As for my ANA, it was positive for 8 years that I know of, could have been longer just hadn't ever had it tested before. My LLMD tested in January and it was neg. for the first time in 8 years. I don't consider it to be a factor in diag. diseases it's too unpredictable. Hope you are having a good weekend. Sarah

     
    Old 06-12-2007, 06:08 AM   #21
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    Re: Sarah....

    Hi Chantel and Sarah
    I am back from NC. We had a great time with our sons. I actually did better than I thought and 80 percent better than last year which I spent mostly in the hotel room so there is hope! My dry eyes have disappeared again. I haven't had it in about 3 days. That is what happens though, I have it badly for 4-5 days and then it goes away. My throat hasn't been as sore either. I see the doctor on Thursday so maybe he won't make me go on IV. We will have to see. Chantel-I had the saliva test done for my cortisol and DHEA levels. That is how I found out I had adrenal insufficiency. I was totally and constantly exhausted 24/7 but just within the past couple of weeks that is slowly disappearing. He upped my cortef in April and I am feeling so much better. It took a while a I really didn't want to take a higher dose but it has made a HUGE difference. I hope you are doing well and post a note if you are not too busy.
    Kim

     
    Old 06-12-2007, 11:24 AM   #22
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    Re: Sarah....

    [QUOTE=sarah92202;3036482]Chantel, Hi Lyme can play havoc with the adrenals and the thyroid. I was diagnosed with AI 4 years ago, before I got the lyme diag. I was looking through books at the bookstore trying to figure out what was wrong with me and found this book "Adrenal Fatigue The 21st Century Stress Syndrome" By James Wilson. I started looking through it and I had just about every symptom, and the fatigue patterns fit perfectly. I talked to my doc about it and he ordered the cortisol tests. 4 years ago I was significantly low, producing about half. Now I produce less than a forth, and my DHEA is very low also. I know that having the Lyme for so long untreated has caused all these problems, but dealing with the AI is a whole nother thing. Steroids are used to treat it, and we are not suppose to take steriods, but like in Kim and I's position our adrenals are functioning so poorly we cannot get better unless we take the steroids, it gets to the point were the benefits outway the risks. Do you have an Endocronologist? You need to see one and talk to him/her about testing for AI. You can go on the Addison's board and look at the symptoms too. As for my ANA, it was positive for 8 years that I know of, could have been longer just hadn't ever had it tested before. My LLMD tested in January and it was neg. for the first time in 8 years. I don't consider it to be a factor in diag. diseases it's too unpredictable. Hope you are having a good weekend. Sarah[/QUOTE

    Hey Sarah,

    I keep forgetting about the Addison board but I will go and take a look. I finally made another appointment to have everything checked but it's not until the 27th. Oh well, at least I'm getting in. I have a hormone apt next week too with an alternative medicine doctor. I need to have my hormones re-checked. They were really low last year and my internist didn't want to put me on anything because of my liver enzymes. I guess I will see what this doctor says. She's into chelation therapy too. The only bad thing is that I have to come up with the money out of pocket. I'm willing to do it though to feel better. I have put off my lyme treament for now until I get my adrenals checked. I need to deal with this exhaustion before I consider treatment. I can barely function lately.

    Anyway, it was nice hearing from you again and thanks for answering my questions.

    Chantel

     
    Old 06-12-2007, 11:31 AM   #23
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    Re: Sarah....

    Quote:
    Originally Posted by ktp812 View Post
    Hi Chantel and Sarah
    I am back from NC. We had a great time with our sons. I actually did better than I thought and 80 percent better than last year which I spent mostly in the hotel room so there is hope! My dry eyes have disappeared again. I haven't had it in about 3 days. That is what happens though, I have it badly for 4-5 days and then it goes away. My throat hasn't been as sore either. I see the doctor on Thursday so maybe he won't make me go on IV. We will have to see. Chantel-I had the saliva test done for my cortisol and DHEA levels. That is how I found out I had adrenal insufficiency. I was totally and constantly exhausted 24/7 but just within the past couple of weeks that is slowly disappearing. He upped my cortef in April and I am feeling so much better. It took a while a I really didn't want to take a higher dose but it has made a HUGE difference. I hope you are doing well and post a note if you are not too busy.
    Kim
    Hey Kim,

    I'm so glad you felt better this time around on your trip. You know, my eyes do the same as your's. They get dry for a few days, then go away for a while and come back again.

    My exhaustion is weird. I feel better in the morning but by the time 12:00 comes, I'm sooooo exhausted then it's down hill from there. I have been sleeping so much lately. Like 13 hours. It's crazy. did it do that to you?

    I am a little worried because I talked to my cousin and she said that her friend had the same symptoms as me and it turned out to be addison's. I'm scared to death to have that. I don't have many of the symptoms. The only ones I have is fatigue and I have a dark brownlike moon shaped circle under my right eye. It looks like a cluster of freckles but it's not. I took a weeks worth of birth control pills a few months ago and thought it was from that. I'm not sure now. I can't wait to get this over with though so I can start feeling better. I would feel so much better without this exhaustion. Blah!

    Chantel

     
    Old 06-12-2007, 12:00 PM   #24
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    Re: Sarah....

    Chantel
    My exhaustion is the same way. I have pretty good mornings and then down hill. No matter how much I rest during the day I don't feel any better. Sometimes when I lay down and get back up I even feel worse. You should have your cortisol levels checked. I went two years feeling like that and had no idea what was wrong. The doctor told me that having the untreated Lyme for 2 years is what caused my adrenals to burn out. It is very hard going through treatment. I have no energy left for anything much but it has been improving alot lately. I see my doctor on Thursday and I will let you know if I am going IV or not. If you do have adrenal problems at least there is treatment for it. You most likely have it because of the Lyme like Sarah and I. Believe me I know what that exhaustion feels like. Talk to you soon.
    Kim

     
    Old 06-14-2007, 10:42 AM   #25
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    Re: Sarah....

    Chantel & Kim, sorry I haven't checked in for a few days, I got a puppy, I am allergic to animals but I found a mini schnauzer that doesn't really bother me. My kids have been driving me crazy wanting a pet, so we got one, I do have a bad sore throat today, don't know if it is from the dog or what. I hope that you are both doing good. Kim, how did your appt. go? Sarah

     
    Old 06-14-2007, 12:47 PM   #26
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    Re: Sarah....

    Hi Sarah and Chantel
    My appointment went good today. He sent me over to have blood drawn for the co-infections. He thought he had done it last time but hadn't. My thyroid levels are still very low. I just had them tested again the other day. He said my pituitary(sp) gland is not telling my thyroid I need more and that is caused from the Lyme. He raised my medication and I will re-test next month. He is also sending me for another CD-57 because he thinks it is still going to be low. He doesn't want to do anything with the medications until he gets all the results back. My WB still showed with 4 IND and a 41+++. He said because of my low CD-57 which was 21 that I do have LD. So we will see what the tests show. My throat is soooo sore. I told him today that it is still very sore and it still says it is the Lyme. I just had my cortisol and DHEA tested again. I am really tired today too. I definately overdid it on vacation and now I am paying for it.
    I love animals and would love to have a houseful. My cat I think would beat up any other animal that came here. He thinks he is the king of this house. I hope your sore throat goes away. My whole neck hurts today from it. I will keep you posted when I hear anything about the tests. Talk to you soon.
    Kim

     
    Old 06-29-2007, 04:51 AM   #27
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    Re: Sarah....

    Hey guys,

    So sorry I haven't posted lately. I went in to see an internist for my hormones and he thinks I have leaky gut syndrome. UGH! What next? He wants me to stay off of Advil and antibiotics for now. Great! I have to go on a special diet too which is not bad because I need to lose the rest of this weight. I had lost 40 pounds and still needed to lose a little more and now I'm at a stand still, so I think this diet will help with that too......plus make me healthy.

    I stil haven't had my adrenals checked yet. I reschedualed my appointment because I was feeling bad again. I had about a week of feeling good then my menstrual cycle started and downhill I went. I slept the entire day yesterday so now I've been up all night. I really hate this.

    I've also been havin back pain and bad headaches that won't go away for about a week now. I have no clue what's going on with that. I cannot bend my neck down all the way. It pulls something in the top of my back.

    Sarah and Kim, I hope you are both feeling good today Please keep in touch! I miss you!

    Chantel

    Last edited by hanelo4; 06-29-2007 at 04:52 AM.

     
    Old 06-29-2007, 07:37 AM   #28
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    Re: Sarah....

    Chantel
    It was so nice to hear from you. I have been thinking about you and Sarah. I am still hanging in there. I just had my second CD-57 test done and the results were 36. Last time they were 21 so I think that is good. My percent went down though to 2 and last time it was 3. I am still waiting on the co-infection tests. My doctor is away so I won't hear until my appt. mid july. I am still feeling a huge difference on the cortef. You must get to that appointment and have your adrenals checked. I know how awful you feel because I have been there but I am sure that is part of the reason. It has been very hard the past two years going to all these appointments when I felt as though I was going to drop at any minute.

    I just went through the whole headache and neck soreness. I still have my sore throat so I think that was part of it. I am not sure if you said you have had your thyroid checked too. My levels are still too low even on the medication so he raised it. He said because my pituitairy isn't sending the message to the thyroid or adrenals because of the Lyme. What exactly is leaky gut? I have heard it mentioned before. I don't want to make this too long. I am always around if you need some support. I know exactly what you feel like. I hope you can get some answers on your other issues so you can start to fight the Lyme. Take care
    Kim

     
    Old 06-29-2007, 05:03 PM   #29
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    Re: Sarah....

    Chantel and Kim, hi!! Good to hear from you both, but sorry that you guys are still feeling bad. I know how it is. Kim, I am glad that the cortef is helping you, it doesn't seem to be helping me. I feel worse now that I am on it. My hips, knees, and wrists are hurting real bad. I just feel aweful, that's why I haven't been posting, not enough energy, plus it hurts alot to type. I got my WA-1 Babesia tests back and they were negative, so that is a good thing, I really thought they would be positive because of my symptoms. Chantel, did you talk to dr. F's office about stopping ABX's? I hope that you guys have a good weekend and stay in touch. I am leaving the 11th to go to WA for 2 weeks and won't be by a computer, so I will try better to stay in touch before I go. Sarah

    Last edited by sarah92202; 06-29-2007 at 05:05 PM.

     
    Old 06-29-2007, 06:20 PM   #30
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    Re: Sarah....

    Sarah
    I am sorry you are feeling so bad. I can't say I am doing great but I do feel as though the cortef has helped alot. Give it time because I didn't feel any difference for 2 months. I was beginning to get discouraged too. I still am very tired most of the time but it isn't as bad as it was. My throat is still sore and I have some muscle pain but that is about all.
    I have not heard about my co-infection testing but I did just get the bill. Yikes...Hopefully insurance will cover most of it. Don't give up with the cortef. It will help, it just takes a while. My doctor told me it could take up to 2 years to get them back to normal. With the Lyme still active I guess it could be longer. Please keep in touch. I missed hearing from you. Hang in there- we will get through this.
    Kim

     
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