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    Old 05-08-2007, 01:08 AM   #61
    hanelo4
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    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Chantel, I hope that you are doing OK, I hadn't heard from you in a few days and was wondering how you were.
    I looked up that med. She asked if he needed any pain med. like Ultram or Darvocet, and i didn't really want him on such strong stuff, she asked if I had heard of Mobic and I said no, she said she would give him 2 weeks of samples. I looked it up, it is basicallly, Vioxx, celebrex, it's a COX-2 Inhibitor that is used for RA, OA, Or JRA. I am kind of afraid for him to take it because of the problems that people have had with VIoxx & Celebrex. Plus, it said studies have not been done on childen under 18, but says it is used to treat JRA, so it's kinda confusing. I was really wondering why she pres. this med. His sed. rate is 1 and has been for years. He said it helped his backache, and asked me Sat. to please give him another one. I gave it to him, but told him to alert me if he felt any racing heartbeat or strange chest pain or pressure. It doesn't seem to bother him, but i'm not going to give it to him every day. He goes back on ABX's next week, doc said 6 more moths on BIaxin, Plaq. & min. then she will switch plaq. with flagyl for 3 months and he should be done with ABX's by then. I hope so.
    About the Armour, I have an extremely sensitive nose, like a bloodhound, I guess that's because I am practically blind, LOL--when my husband smeeled in the bottle hesaid it was the sickest thing he had ever smelled and said it smelled like pig ****! Does Synthroid smell? Thanks for all the advice, kep in touch, Sarah
    Hugs Sarah

    I have been doing okay. I've been really tired again and my legs have been bad. My arms hurt too but not as bad as my legs. I think it has something to do with my thyroid for sure now. My daughter is graduating from HS next week so I will have to scheduale an apt with an endo after all of that is finished. I've just been so busy lately and it's hard trying to do all of this and work around being sick and tired. I slept all day yesterday.

    Oh! I didn't know that mobic was actually vioxx and celebrex. Hmmmm, I would call back and ask about that. Maybe it has something different in it? It's scary that he is taking it knowing all of that but at the same time, it's helping him. I wouldn't know what to do. I wouldn definitely call the doctor and talk to him though.

    No, synthroid doesn't smell bad at all. In fact, I don't think it smells at all. But, you will have to ask your endo why he put you on Armour because Armour has T3 and T4 in it and synthroid doesn't. He may have put you on it for a reason.

    I sure hope you and your son get better soon. This disease is such a hard one to treat. I hate to see people suffer with this, especially children

    Edited to ask you something about adrenal fatigue. My internist thought I had this a few months ago just by my symptoms but never did a test. My first question is who should I see to get this test done? My second question is what are you taking for this besides Pregnenolone? Are you on steroids? I'd hate to even go there if I do have this. Also, what test did you take that said you had this for sure? I read that you could do a saliva test, 24 urine test. Ack! This is all so confusing. The funny thing is that I do have many of the symptoms of adrenal exhaustion. Also, the nurse that I was seeing for my supplements had me on Pregnenolone(DHEA) and Adrenal Glandulars a few months ago but I decided to get off of them. Oh man! Sorry for all the questions but this has got me very interested now. I'm wondering if that is where all of my exhaustion is coming from.

    Hugs hun,
    Chantel

    Last edited by hanelo4; 05-08-2007 at 03:26 AM.

     
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    Old 05-08-2007, 01:11 AM   #62
    hanelo4
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    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    I take synthroid and it doesn't smell at all. It is just a little light purple pill. I am not sure why the doctor chose that over armour. I had a good Saturday and a really bad Sunday. I woke up alright but then I got a bad sore throat and just felt terrible. That has been one of my worse herx symptoms. I ended up in bed most of the afternoon and it was so beautiful here yesterday. How are you doing?

    Chantal
    I have had muscle cramping and I am on synthroid. I had it very bad in my calfs, feet and hand at one time. That was way in the beginning of all this before I was being treated. I am not sure if it is a symptom of low thyroid or not but I did experience the cramping.
    KIm
    Kim

    Thank you for letting me know that. I seriously think this is what's happening to me. I don't have the T3 and T4 anymore and it is causing leg cramps. I just switched back to Armour so I will see in the next week or so if it gets better.

    Chantel

     
    Old 05-08-2007, 01:15 AM   #63
    hanelo4
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    Re: My Lyme test results

    Quote:
    Originally Posted by ticker View Post
    Hi Chantel. Yes muscle cramping can be a thyroid symptom.

    The thyroid board here is great--a lot of helpful people.
    Thanks Ticker I started reading up on it last night and found some very helpful information. I will probably post a question soon

    I switched back to Armour so I will see if it makes a difference.

    Chantel

     
    Old 05-08-2007, 01:23 AM   #64
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    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    Yeah, bad day for me. I spent most of the afternoon in bed. My throat is so sore and I just feel bad..My herx doesn't seem to have a pattern at all. I had a sore throat for 4 straight months after starting the ketek. In March when he switched me to ceftin and ketek it started coming and going. It is hard to believe that after 6 months on these abx there are still bacteria around. I know I was sick for 2 years but wow I never knew how bad this illness was. I live in NH and most people and Doctors don't know anything about Lyme.
    I am going to ask the doctor about that supplement. I am taking the 5HTP but I am not sure what that is suppose to be doing for me. I think he will switch the cortef doses around. He has to do something UGH. He doesn't do the IV's so if he thinks I need to have that I will have to go to someone else.
    My insurance co. didn't pay for the Igenex test. I want to have another one done and another CD-57. I am going to ask next week. Thank goodness the insurance takes care of most of the abx. The ketek is still very expensive though. Lets hope that tomorrow will be a better day for us. Take care
    Kim
    Hey Kim

    I took 5HTP a few months ago and it helped. Although, I probably need a smaller dose because I found it made me "out of it" a little, it supposed to be good for a whole bunch of things. It is an amino acid that is the intermediate step between tryptophan and the important brain chemical serotonin. Here is a list of symptoms it is supposed to help:

    Depression
    Obesity
    Carbohydrate craving
    Bulimia
    Insomnia
    Narcolepsy
    Sleep apnea
    Migraine headaches
    Tension headaches
    Chronic daily headaches
    Premenstrual syndrome
    Fibromyalgia

    In fact, I had forgot about it and after readin your post, I think I will start taking it again. It really helped me. I bet it will help the pain in my legs too.

    Hugs,
    Chantel

     
    Old 05-08-2007, 05:28 AM   #65
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    Re: My Lyme test results

    Hi Chantel
    I am sorry I spelled your name wrong in the other post. I think my doctor put me on 5HTP because I was feeling really frustrated at my last appt. I was feeling really down because I still have the horrible fatigue and sore throat. I also still have the muscle twitching but he said that is from the Lyme. I don't really know. So far I don't notice anything taking the 5HTP so I might just stop it. I take so many pills now it is incredible.
    I have the same problem as Sarah, secondary Adrenal Insufficiency. My first doctor suspected it but never did anything about it. My LLMD did the saliva test and urine testing because he thought I probably had this also. The test was very expensive but my insurance paid for it. My doctor did put me on cortef because I was so miserable. I haven't really had a life for over 2 years and the physical exhaustion is almost unbearable. I know it isn't good for Lyme patients but something had to be done. I think these two tests are very reliable and it showed me that something else was going on. I hope you can have them done. Take care.
    Hugs
    Kim

     
    Old 05-08-2007, 07:02 AM   #66
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    Re: My Lyme test results

    Quote:
    Originally Posted by Chantel2003 View Post
    Hugs Sarah

    I have been doing okay. I've been really tired again and my legs have been bad. My arms hurt too but not as bad as my legs. I think it has something to do with my thyroid for sure now. My daughter is graduating from HS next week so I will have to scheduale an apt with an endo after all of that is finished. I've just been so busy lately and it's hard trying to do all of this and work around being sick and tired. I slept all day yesterday.

    Oh! I didn't know that mobic was actually vioxx and celebrex. Hmmmm, I would call back and ask about that. Maybe it has something different in it? It's scary that he is taking it knowing all of that but at the same time, it's helping him. I wouldn't know what to do. I wouldn definitely call the doctor and talk to him though.

    No, synthroid doesn't smell bad at all. In fact, I don't think it smells at all. But, you will have to ask your endo why he put you on Armour because Armour has T3 and T4 in it and synthroid doesn't. He may have put you on it for a reason.

    I sure hope you and your son get better soon. This disease is such a hard one to treat. I hate to see people suffer with this, especially children

    Edited to ask you something about adrenal fatigue. My internist thought I had this a few months ago just by my symptoms but never did a test. My first question is who should I see to get this test done? My second question is what are you taking for this besides Pregnenolone? Are you on steroids? I'd hate to even go there if I do have this. Also, what test did you take that said you had this for sure? I read that you could do a saliva test, 24 urine test. Ack! This is all so confusing. The funny thing is that I do have many of the symptoms of adrenal exhaustion. Also, the nurse that I was seeing for my supplements had me on Pregnenolone(DHEA) and Adrenal Glandulars a few months ago but I decided to get off of them. Oh man! Sorry for all the questions but this has got me very interested now. I'm wondering if that is where all of my exhaustion is coming from.

    Hugs hun,
    Chantel
    Chantel, glad to hear from you! Congratulations on your daughters graduation, that is exciting but scary too!
    I see an Endocronologist for the Adrenal Insufficiency. He ran a 24 hr saliva test. You take it at home, so it is pretty easy. the lab Diagnos-Techs sends the kit to your house. You suck on this cotton thing for 3-5 min. at 7-8 AM, 11am-12pm, 4-5pm & 11-midnight. this tests how much cortisol your body is producing at cetain times of the day. The levels are suppose to be their highest in the morning, and get lower as the day goes on. this test also includes, DHEA levels, post-prandial insulin levels,Total Salivary SIgA and Gliadin Ab,SIga. My endo put me on the preg. because I didn't want to take the Cortef because of the Lyme disease. He is giving me 8 weeks to get levels up by using preg, Biotin, enzymatic supplements and eating differently-no noodles, rice, breads, coffee, soda-all the good stuff, LOL. You can also try taking Licorice extract for your adrenals. My lab results mention this on the suggested treatment page. I am hoping to bring my levels up and not have to take the Cortef. I would definately recommend this test. Why did you stop taking the preg? Do you feel like it helped you at all? I felt more energy at first, but now I have went back on my ABX's and feel crappy! Bad migraine today I have nosticed that I am not needing as much sleep though and that is good. I hope that you have a good day, Sincerely Sarah

    Last edited by sarah92202; 05-08-2007 at 07:03 AM.

     
    Old 05-10-2007, 03:48 AM   #67
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    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Chantel, glad to hear from you! Congratulations on your daughters graduation, that is exciting but scary too!
    I see an Endocronologist for the Adrenal Insufficiency. He ran a 24 hr saliva test. You take it at home, so it is pretty easy. the lab Diagnos-Techs sends the kit to your house. You suck on this cotton thing for 3-5 min. at 7-8 AM, 11am-12pm, 4-5pm & 11-midnight. this tests how much cortisol your body is producing at cetain times of the day. The levels are suppose to be their highest in the morning, and get lower as the day goes on. this test also includes, DHEA levels, post-prandial insulin levels,Total Salivary SIgA and Gliadin Ab,SIga. My endo put me on the preg. because I didn't want to take the Cortef because of the Lyme disease. He is giving me 8 weeks to get levels up by using preg, Biotin, enzymatic supplements and eating differently-no noodles, rice, breads, coffee, soda-all the good stuff, LOL. You can also try taking Licorice extract for your adrenals. My lab results mention this on the suggested treatment page. I am hoping to bring my levels up and not have to take the Cortef. I would definately recommend this test. Why did you stop taking the preg? Do you feel like it helped you at all? I felt more energy at first, but now I have went back on my ABX's and feel crappy! Bad migraine today I have nosticed that I am not needing as much sleep though and that is good. I hope that you have a good day, Sincerely Sarah
    Hey Sarah

    Thanks so much for explaining all of that to me. I read something on adrenal exhaustion and it said not to take diet pills when you have that. I haven't taken them in a few years but I can remember the last year of taking them, I would feel really run down and extremely exhausted. I had never felt like that before. I feel like that with caffeine too. I guess I need to have it checked when I go see my endo. Thank you so much for all of your time. It is much appreciated.

    I also wanted to tell you that I got my CD57 test results came back. I will make a new thread for that because I have no clue what it means. Dr. Forester has not gone over them with me yet and I think the nurse accidentally faxed them to me, lol. She was faxing over some other blood work and included this one. He wrote on there that the number was low and that Lyme is very likely. I just don't know. It is so hard for me to except when I don't have enough proof.

    To be honest, I was a skeptic about taking supplements and that's why I got off of everything. An internist I went to had me VERY scared to take anything when my liver enzymes were high. She was just a bad doctor altogether. I understand being cautious but scaring me to death is just not necessary. That's another reason I got off but now, I know better. I am going to get back on everything again soon. I felt better when I was taking everything. I had a hair annalysis done last year and was put on supplements that I was missing in my body. Preg was one of them. Adrenal gladulars were another. I will have to go back to see her though and we will have to start all over and go slower this time. I do a detox first and it makes me real sick so that is why I have to take it slower.

    Anyway, I'm sorry the abx's are making you feel like crap again I wish there was something we could take to instantly make us feel better. I will be praying for you hun.

    Hugs,
    Chantel

     
    Old 05-10-2007, 03:57 AM   #68
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    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Hi Chantel
    I am sorry I spelled your name wrong in the other post. I think my doctor put me on 5HTP because I was feeling really frustrated at my last appt. I was feeling really down because I still have the horrible fatigue and sore throat. I also still have the muscle twitching but he said that is from the Lyme. I don't really know. So far I don't notice anything taking the 5HTP so I might just stop it. I take so many pills now it is incredible.
    I have the same problem as Sarah, secondary Adrenal Insufficiency. My first doctor suspected it but never did anything about it. My LLMD did the saliva test and urine testing because he thought I probably had this also. The test was very expensive but my insurance paid for it. My doctor did put me on cortef because I was so miserable. I haven't really had a life for over 2 years and the physical exhaustion is almost unbearable. I know it isn't good for Lyme patients but something had to be done. I think these two tests are very reliable and it showed me that something else was going on. I hope you can have them done. Take care.
    Hugs
    Kim

    Hi Kim

    Maybe you need to take a higher dose of the 5HTP. I think the reason it made me feel out of it was because my liver enzymes were high and it wasn't filtering right through my liver and staying in my body longer. Recently though, my enzymes have gone down so I will have to try it again. I have a full bottle here.

    You know I go back and forth with trying to believe I have Lyme since my tests were negative. I did have some positive bands and my CD57 test, I think, are low. At least that is what my doctor wrote on the paper but he hasn't gone over it with me yet. It's funny because when I read about all of the symptoms you all have, I have the exact same things going on. Especially the twitching. I get muscle twitching really bad and it's all over. Mostly in my legs though. I just wish I had something that said, yes you have this, so I would know what to do.

    After my daughter graduates next week, I will make an appointment with an endo and get my thyroid rechecked and talk to him about the adrenal problem. How weird that a lot of us all have this huh?

    Anyway, I hope you feel better soon hun. I will talk to you later.

    P.S.- I didn't even notice you misspelled my name Don't worry about it. I used to get called every other name besides my own, lol.

    Hugs,
    Chantel

    Last edited by hanelo4; 05-10-2007 at 03:58 AM.

     
    Old 05-10-2007, 11:08 AM   #69
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    Re: My Lyme test results

    Hi Chantel

    I feel exactly like you about the lyme diagnosis. I had 2 IND and one +++ on my test but they were all Lyme bands. My CD-57 was almost just like yours. My first number was a 2 and the other was a 21. I know that is low but I have been on abx for 6 months and feel no different. I am not sure if the adrenal problem is making it worse. Some days I am more exhausted than others and I never know what the day will be like. I guess I would just feel better to have a positive test. I am not sure why but I guess because I have felt bad for so long that I keep thinking some piece of this puzzle is missing. I have to have my liver enzymes tested every other week because of the Ketek.
    I see the doctor next week and will see what he has to say. I just don't know what to think anymore. I will definately be asking for another Western Blot and CD-57 since it has been 6 months. I will be curious as to what they say now. My son graduates college in December and I am praying I will be feeling much better by then. I hope you have some improvement as well and I will be interested to hear what your doctor has to say about your results. Keep in touch.
    Kim

     
    Old 05-16-2007, 08:11 AM   #70
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    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    My doctor did put me on Cortef. I am also producing only about 1/4 during the entire day except at the 10pm reading. I am extremely physically exhausted all the time. I have a few good hours in the morning but other than that it is horrible. How do you cope with this? I am on a high dose of cortef since the lower dose did nothing for me. I know since I have Lyme it is not good to be on it but I think he felt I needed it. I have been on abx for 6 months and the physical exhaustion for me is still the worse. I am going to ask for a recheck of my CD-57 next week. It seems as though since he changed me to ceftin I am not doing as well. I want to go back on the amox/probenecid and stay on the ketek. I feel that was helping me the most.
    Kim
    Hi Kim,

    How have you been feeling hun? Is the exhaustion getting any better? I am the same as you. I feel a lot better in the morning than I do during the day. I feel so exhausted around 1pm. It's not really a sleepy feeling, although if I do go lay down, I am probably out for the rest of the night, it's more like a physical exhaustion. I feel like I can't do anything. My whole body is weak. I feel aweful too. Like something is wrong. It's hard to explain.

    Anyway, I hope things are looking up for you. I have an apt to see a new endo next week so I will let you all know how it goes.

    Big hugs,
    Chantel

     
    Old 05-16-2007, 08:18 AM   #71
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    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Chantel, glad to hear from you! Congratulations on your daughters graduation, that is exciting but scary too!
    I see an Endocronologist for the Adrenal Insufficiency. He ran a 24 hr saliva test. You take it at home, so it is pretty easy. the lab Diagnos-Techs sends the kit to your house. You suck on this cotton thing for 3-5 min. at 7-8 AM, 11am-12pm, 4-5pm & 11-midnight. this tests how much cortisol your body is producing at cetain times of the day. The levels are suppose to be their highest in the morning, and get lower as the day goes on. this test also includes, DHEA levels, post-prandial insulin levels,Total Salivary SIgA and Gliadin Ab,SIga. My endo put me on the preg. because I didn't want to take the Cortef because of the Lyme disease. He is giving me 8 weeks to get levels up by using preg, Biotin, enzymatic supplements and eating differently-no noodles, rice, breads, coffee, soda-all the good stuff, LOL. You can also try taking Licorice extract for your adrenals. My lab results mention this on the suggested treatment page. I am hoping to bring my levels up and not have to take the Cortef. I would definately recommend this test. Why did you stop taking the preg? Do you feel like it helped you at all? I felt more energy at first, but now I have went back on my ABX's and feel crappy! Bad migraine today I have nosticed that I am not needing as much sleep though and that is good. I hope that you have a good day, Sincerely Sarah
    Sarah,

    Hey hun. I haven't seen you around and was wondering how you were feeling? When do you go back to re-test your adrenals? I'm so sorry I didn't write earlier but I've had that exhaustion thing going on again. How are things going with the abxs? You know, I think I am going to try the no noodles, bread, rice, etc just to see what happens. Maybe it will help me with my exhaustion. I will be getting back on the preg and adrenal glandulars after my apt next week with the endo. I will wait till then so it doesn't mess with my results. I will let you all know what he says.

    Anyway, I miss chatting with you and I hope things are going well.

    Big hugs,
    Chantel

     
    Old 05-16-2007, 10:09 AM   #72
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    Re: My Lyme test results

    Quote:
    Originally Posted by Chantel2003 View Post
    Sarah,

    Hey hun. I haven't seen you around and was wondering how you were feeling? When do you go back to re-test your adrenals? I'm so sorry I didn't write earlier but I've had that exhaustion thing going on again. How are things going with the abxs? You know, I think I am going to try the no noodles, bread, rice, etc just to see what happens. Maybe it will help me with my exhaustion. I will be getting back on the preg and adrenal glandulars after my apt next week with the endo. I will wait till then so it doesn't mess with my results. I will let you all know what he says.

    Anyway, I miss chatting with you and I hope things are going well.

    Big hugs,
    Chantel
    Chantel, I had a hectic week, my ex is a loser and had to be taken to family court because he won't pay CS or medical, and we have a sick child. And it isn't an income problem for him, he is a Superintendant who makes 100,000-120,000 a year depending on over-time and bonuses. It is so sad I have had to get 5 court orders in 3 years, the first year and 1/2 I didn't even bother with him, I just wanted to be rid of him. But now my son has alot of medical bills and the travel is expensive too. I agreed this time not to have him arrested, but they said next time they will just do it. It really took alot out of me last week.
    This Wobenzym N that I have been taking for 3 weeks, I think is helping me along with the preg. I am still waking early in the morning and feel well enough to get up, where before I would get my husband off to work, take kid to school, go back to bed at 8:00 am sleep until 11:00-12:00, now I am staying up. So I am showing improvement. But I had to reduce the preg. down to just one 50mg caplet a day, 2 was making me very shaky like overdose of nodoz. I have been chatting with 2 women on the Addison's board, Kim has LD and AI, MaryAnn has AI, but we all have the same types of symptoms, you could join us over there too, I know they would be happy to have someone else to chat with who also knows how we feel. Let me know how you're doing back on the preg. Take Care, Sincerely, Sarah

     
    Old 05-16-2007, 01:16 PM   #73
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    Re: My Lyme test results

    Hey Chantel
    I am still feeling pretty exhausted. It is like you said exactly a physical exhaustion, not sleepy. I have had a terrible sore throat and I had a pretty good day Saturday and Sunday but Monday was bad again. I am seeing my doctor tomorrow and I have no idea what he will do for me. I think he is going to be surprised that the cortef didn't do much for me considering how much I am taking. I will post tomorrow and let you know what happens. Good luck with the graduation. My son graduated college 2 years ago and I didn't think I was going to make it through. At that time I had no idea what was wrong with me so that made it so much worse. I have to lay down every afternoon, there is no way that I can stay up without resting. The exhaustion just overwhelms me. It is nice to have so much support here. Take care.
    Kim

     
    Old 05-17-2007, 08:09 AM   #74
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    Re: My Lyme test results

    Hey Sarah

    I'm so happy you finally wrote back. I'm so sorry things with your ex are like that. I have one too and know exactly how you feel. We are alike in so many ways. I've been remarried now for 13 years and he has been the one to raise my daughter since she was 3 and provide insurance for her. It's sad. I'm wondering if you could get some kind of medical assistance since he is not paying? I would try since your son really needs this and his father is not concerned about his well being. Maybe that will put a fire under his you know what.

    I really would like to try the Wobenzym N and get back on the preg again even if I don;t have adrenal issues. I'm sure it can only help.

    Thanks for inviting me over to the addison's board. I will give it a look and maybe chat a bit with all of you. I hope things get better for you and your son.

    Hugs,
    Chantel

     
    Old 05-17-2007, 08:10 AM   #75
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    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Hey Chantel
    I am still feeling pretty exhausted. It is like you said exactly a physical exhaustion, not sleepy. I have had a terrible sore throat and I had a pretty good day Saturday and Sunday but Monday was bad again. I am seeing my doctor tomorrow and I have no idea what he will do for me. I think he is going to be surprised that the cortef didn't do much for me considering how much I am taking. I will post tomorrow and let you know what happens. Good luck with the graduation. My son graduated college 2 years ago and I didn't think I was going to make it through. At that time I had no idea what was wrong with me so that made it so much worse. I have to lay down every afternoon, there is no way that I can stay up without resting. The exhaustion just overwhelms me. It is nice to have so much support here. Take care.
    Kim
    Kim,

    Let us know what your doctor says and I hope you start feeling better soon hun.

    Hugs,
    Chantel

     
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