It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board

  • My Lyme test results

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 05-01-2007, 01:11 PM   #31
    ktp812
    Inactive
    (female)
     
    Join Date: Dec 2006
    Location: NH
    Posts: 171
    ktp812 HB User
    Re: My Lyme test results

    Hi Sarah
    Yeah, I feel exhausted every day. Once in a while I will have a normal morning but not very often. I have no side effects from the cortef but I haven't felt any different taking it either. I am not sure if it is because the lyme infection is still bad or what is going on. It will be discussed next time I see him. He did say it takes a long time for the adrenals to recover and if they are still stressed from the lyme then I guess we are in for a long haul. It is so depressing at times because I haven't felt well in so long. I wake up tired most of the time also. I am just not sure what to do next. I think I am feeling worse on the ceftin. I want to stop it and go on something else. I have been on the ketek since November. I have my liver tested every two weeks and it is fine so far. I couldn't stand the biaxin so he took me off that.

    I do have the book by James Wilson. A friend gave it to me about a year ago before I even knew what was wrong with me. The doctor only told me to eat more protein and that is about it. I told him I eat pretty good anyway and try to exercise when I can. I use to run 45 miles a month before I got sick. I was actually running a little before I started on the antibiotics. Since then I really have no energy and actually feel worse than ever. My husband has been very supportive but I don't think anyone can understand the type of fatigue we are feeling. I am just physically exhausted, not sleepy tired. I am going to check into the WobenzymN. I am willing to try anything right now. Thanks for replying to my post.
    Kim

     
    Sponsors Lightbulb
       
    Old 05-01-2007, 02:05 PM   #32
    sarah92202
    Veteran
    (female)
     
    sarah92202's Avatar
     
    Join Date: Mar 2007
    Location: USA
    Posts: 486
    sarah92202 HB User
    Re: My Lyme test results

    Kim, I feel the same way that you do. the signs and symptoms in Chapter 5 describe me totally, and then we have the Lyme to add to it. How are you sleeping at night? As for my dietary restrictions I think my Endoc. read Dr, Wilsons book, LOL. No bread products, noodles, white rice, potatoes, cereal, soda, coffee, chocolate. No juice, fruit or cereal for breakfast. No cakes, muffins, doughnuts. He said eat protein, veggies, nuts and olive oil dressings and lots of water. I mostly have been having trouble with the soda and coffee, because my blood sugar drops and i have no energy ever, these things kept me going. But were really very bad for me. All these things also contribute to candida, which also causes fatigue, big vicious circle!! I think this diet would also be very beneficial to Lymies too, since we deal with the fatigue and yeast, so I am doing it, the only thing I'm cheating on is the coffee, I had a few caramel macchiatos this past weekend. they are decaf and have just as much cream as coffee. That will be my weekend splurge.
    I am sorry that you are going through this too. I do understand your fatigue, and feel for you. Sarah

     
    Old 05-01-2007, 03:09 PM   #33
    ktp812
    Inactive
    (female)
     
    Join Date: Dec 2006
    Location: NH
    Posts: 171
    ktp812 HB User
    Re: My Lyme test results

    Sarah
    I can't give up the caffeine! I still have coffee in the morning but that is it. Only two cups.. I am suppose to be eating eggs and turkey bacon in the morning. He said no cereal but it is hard to eat that everyday. I lost alot of weight in the past 2 years so I have to eat bread and pasta just to keep on the weight. He did say to eat lots of nuts and seeds too. I also have thyroid problems as well so that is only another added problem. I was also diagnosed with osteopenia last year due to the adrenal problems. That is another reason I shouldn't be taking cortef. That will be another thing to talk about. I am sorry you feel like I do but it is nice to know that someone knows exactly what I am talking about.
    As for sleeping I am taking lunesta. There would be some nights where I would lay awake all night and not fall asleep until five in the morning. I was actually sent to a sleep specialist first but she said I didn't need a sleep study. She first prescribed the lunesta because I had been diagnosed with CFS. Then when the lyme/adrenal diagnosis came along, my doctor gave me the prescription. He said sleep is very important to recovery and if I needed a pill to achieve it then that was fine with him. If I could just have a few good days it would give me the strength to keep fighting. I am so very tired...I love the caramel macchiatos too! My son introduced them to me and now I am hooked.
    Kim

    Last edited by ktp812; 05-01-2007 at 03:12 PM.

     
    Old 05-01-2007, 03:13 PM   #34
    ktp812
    Inactive
    (female)
     
    Join Date: Dec 2006
    Location: NH
    Posts: 171
    ktp812 HB User
    Re: My Lyme test results

    Sarah
    One more thing. I am sure you posted this someplace but what are you taking for the Lyme? I am just curious because I am not happy with what I am on. Thanks
    Kim

     
    Old 05-01-2007, 04:09 PM   #35
    Beachgirl0916
    Inactive
    (female)
     
    Join Date: Mar 2007
    Location: Long Island, New York
    Posts: 79
    Beachgirl0916 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    I can't give up the caffeine! I still have coffee in the morning but that is it. Only two cups.. I am suppose to be eating eggs and turkey bacon in the morning. He said no cereal but it is hard to eat that everyday. I lost alot of weight in the past 2 years so I have to eat bread and pasta just to keep on the weight. He did say to eat lots of nuts and seeds too. I also have thyroid problems as well so that is only another added problem. I was also diagnosed with osteopenia last year due to the adrenal problems. That is another reason I shouldn't be taking cortef. That will be another thing to talk about. I am sorry you feel like I do but it is nice to know that someone knows exactly what I am talking about.
    As for sleeping I am taking lunesta. There would be some nights where I would lay awake all night and not fall asleep until five in the morning. I was actually sent to a sleep specialist first but she said I didn't need a sleep study. She first prescribed the lunesta because I had been diagnosed with CFS. Then when the lyme/adrenal diagnosis came along, my doctor gave me the prescription. He said sleep is very important to recovery and if I needed a pill to achieve it then that was fine with him. If I could just have a few good days it would give me the strength to keep fighting. I am so very tired...I love the caramel macchiatos too! My son introduced them to me and now I am hooked.
    Kim
    My Lyme doctors have told me to eat whatever I want. They said sugar in moderation, and that was about it. Even while on IV Rocehphin. Because I am so severely sick, and lost 30 pounds from only being around 115, and because none of the 8 lyme doctors I have been to can seem to get my lyme/babesiosis under control so I can walk or stop shaking...I guess they figured I might as well try to gain some of my weight back. Problem is Im not hungry anyway But at least I KNOW I can eat anything

     
    Old 05-02-2007, 08:42 AM   #36
    sarah92202
    Veteran
    (female)
     
    sarah92202's Avatar
     
    Join Date: Mar 2007
    Location: USA
    Posts: 486
    sarah92202 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    I can't give up the caffeine! I still have coffee in the morning but that is it. Only two cups.. I am suppose to be eating eggs and turkey bacon in the morning. He said no cereal but it is hard to eat that everyday. I lost alot of weight in the past 2 years so I have to eat bread and pasta just to keep on the weight. He did say to eat lots of nuts and seeds too. I also have thyroid problems as well so that is only another added problem. I was also diagnosed with osteopenia last year due to the adrenal problems. That is another reason I shouldn't be taking cortef. That will be another thing to talk about. I am sorry you feel like I do but it is nice to know that someone knows exactly what I am talking about.
    Kim
    Kim, it sounds like your doc gave you the same rules, same here no cereal, eegos, pancakes, juice, and he said no fruit for breakfast, but I can have it later in the day. Today I had run out of eggs and spent 30 min. trying to figure out what to eat for breakfast, finally gave up and am drinking water! I don't like regular coffee, so that is out, unless I go to starbucks for mach's & mocha's. I am having the same problem you are with the weight. We are so much alike it's amazing. I have struggles to keep weight on for years I lost 35 lbs last year, 10 of it in 2 weeks, The fattening sugary foods are the only way for me to keep on the weight. I get too thin, I gained 13 back in 5 month by eating Quarter pounders french fries, and Sonic everything, but now that I have been on this diet restriction for one week i have lost 6 lbs again. I am 20 lbs under what I should be. And I love to eat, that isn't the problem, without the Dr. Peppers I'm gonna dwindle away! I am trying to eat alot of meat to make up for it, not hamburgers, but pot roast, chicken, counrty ribs, and lots of Beans since no noodles allowed. It's really hard! I am also glad that someone understands what I am going through! Sarah

    Last edited by sarah92202; 05-02-2007 at 08:49 AM.

     
    Old 05-02-2007, 08:46 AM   #37
    sarah92202
    Veteran
    (female)
     
    sarah92202's Avatar
     
    Join Date: Mar 2007
    Location: USA
    Posts: 486
    sarah92202 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by ktp812 View Post
    Sarah
    One more thing. I am sure you posted this someplace but what are you taking for the Lyme? I am just curious because I am not happy with what I am on. Thanks
    Kim
    Kim I just started back on Biaxin 500mg twice a day, Minocyline 500mg twice a day, and Plaquenil 100mg twice a day. I was off for 2 months. My son takes the same thing. I have him on Holiday right now, he was on for 6 months, now he is off for 1, he hasn't relapsed, but still has the neck pain and fatigue. I am taking him Friday to have adrenals checked. Sarah
    Oh, my son takes the Lunesta too. He has alot of trouble sleeping. I used to have more trouble sleeping then I do now and took Elavil, now I take 5mg of Diazapam, if I don't my neck kills me in the morning.

    Last edited by sarah92202; 05-02-2007 at 08:49 AM. Reason: Add to

     
    Old 05-02-2007, 10:58 AM   #38
    ktp812
    Inactive
    (female)
     
    Join Date: Dec 2006
    Location: NH
    Posts: 171
    ktp812 HB User
    Re: My Lyme test results

    Sarah
    I started on the biaxin and plaquenil in the beginning. I couldn't stand the metal taste in my mouth and asked to be put on something else. I really feel I am not doing as well on the ceftin. I don't think the doctor is going to like me very much when I see him later in the month. I am really going to complain and ask lots of questions.
    I just had to go out and buy new pants because my old ones are too big. I had to buy all new capri's also. I will gain a few pounds and then I will lose it again. I am so tired all the time I don't feel like cooking. I wish I had a cook and then I would eat alot more. I have to eat a sandwhich most days for lunch and some fruit. For a long time I was eating Lean Cuisine but he didn't want me eating those because they didn't have enough calories. I am sorry your son has Lyme too. I am so surprised no one else in my family got it. My sons are both in college but our back yard is wooded and we have deer coming into the yard in the winter.
    Keep in touch and if you find anything that helps with the fatigue please share it with me!
    Kim

     
    Old 05-02-2007, 11:48 AM   #39
    ticker
    Senior Veteran
    (female)
     
    ticker's Avatar
     
    Join Date: Jan 2002
    Posts: 5,790
    ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
    Re: My Lyme test results

    Sarah, are you taking 1000 mg daily of Minocycline plus Biaxin and Plaquenil?

     
    Old 05-02-2007, 12:23 PM   #40
    sarah92202
    Veteran
    (female)
     
    sarah92202's Avatar
     
    Join Date: Mar 2007
    Location: USA
    Posts: 486
    sarah92202 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by ticker View Post
    Sarah, are you taking 1000 mg daily of Minocycline plus Biaxin and Plaquenil?
    OOPS! put an extra 0 in there 50mg twice a day. that makes a big difference huh!

     
    Old 05-02-2007, 12:34 PM   #41
    sarah92202
    Veteran
    (female)
     
    sarah92202's Avatar
     
    Join Date: Mar 2007
    Location: USA
    Posts: 486
    sarah92202 HB User
    Re: My Lyme test results

    Kim, I know what you mean about the bad taste it is from the Biaxin, I just deal with it, this combo worked really good for my son, he has shown quite a bit of improvement on it. But after six months I think he needs to switch to something else. I'm going to ask his doc to switch to doxy for a while. and see how he does. Basicaly for the fatigue the only thing I've found that really helps me is to sleep between 6 am-10-am. I get to do that in the summer, and it helps but then when kids go back to school I have such a bad time Sept. is my worst month. I know what you mean about the clothes, I have 4 different sizes of pants in my closet. And I never know which size I'll be wearing. Do you ever swell up for a few weeks thinking that you have gained weight, and then sweat it off in 2-3 nights? This happens to me. It is so weird. I think I'm gaining weight that is going to stay on, it startes with my breasts, I go from a 34B to 36B in a matter of days, and go from a size 4 to 8, I've even went up to a 10 once. It lasts about 2 weeks and then 2 or 3 nights of extreme sweating and it is gone again. It is so frustrating. I'll keep you in touch if I find anything that works for the fatigue and you do the same. it is so good to have someone to relate to, I just wish it was of better circumstances. Sarah!

     
    Old 05-02-2007, 02:50 PM   #42
    ticker
    Senior Veteran
    (female)
     
    ticker's Avatar
     
    Join Date: Jan 2002
    Posts: 5,790
    ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
    Re: My Lyme test results

    Sarah, I thought that was an extreme dose!

     
    Old 05-02-2007, 10:01 PM   #43
    hanelo4
    Inactive
    (female)
     
    Join Date: Oct 2003
    Location: Louisiana
    Posts: 1,274
    hanelo4 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Chantel!!! I would say yes the leg cramps are worse because of the ABX's, make sure you are drinking ALOT of water, this will help your stomach too. Congratulations on your Anniversary!!!
    I have heard of Sam-E I took it 8 years ago when I was very sick, I probably didn't give it long enough to help, it made me feel more sick, so I stopped, but I find that with alot of supplements.
    Yes I have had my hormones checked right now I have addrenal insufficiency thta is pretty bad, my Endocr. wanted me to take Cortef, but i said no because of the Lyme, so he said for me to take pregnenolone for 8 weeks and then retest to see if that helps, and then if it's not he will put me on 5mg of Cortef, because he feels that my adrenals are failing and we have to do something to stop it, even if it is taking a low dose steriod. I have been refusing the steriods for 4 years and my cortisol went from producing half in the morning and normal other times, to now producing less than a 1/4 all the time, so it is pretty severe. He also says that I have hypothyroidism, but not real bad, he put me on Armour, but it was the most disgusting smelling stuff in the world, it smells like pig crap, no joke!!!
    How are you feeling? Keep us informed Sarah
    Oh boy! I tell you. You sound a lot like me. I was also told I may have addrenal exhaustion. How do they test for that? The doctor I was seeing at the time made me depressed so I stopped going to her. I want to have hope not think I am going to die!

    I guess I can try the Sam-E and see what it does. It's either that or I'm back on anti-depressants which I sooooo do not want to do. I have been off of them for over a year and finally feel like I have my head back. They gave me severe panic attacks too. Weird because they are supposed to control them. I just don't want to go that route if I don't have too so I'm looking into something natural. My husband doesn't want me back on them either because he said I was a zombie.

    I too have hypothyroidism. I was diagnosed in 2003. My numbers were way off back then and I felt soooo bad. All I wanted to do was sleep all the time. That's weird that youlose weight like that. I gained when I first found out that's what I had. It took me a while to finally start loosing. I started off taking Armour and found it worked really well for me. I took it for a while, even started to fonally lose weight. I had been trying for so long and didn't know why I couldn't lose until I found out it was my thyroid. I switched to synthroid but all that does is make me real anxious so I'm going back to Armour. I find it has less side effects even if it does smell bad, lol. It is made from a pig thyroid. You knew that right? LOL

    I'm feeling better today. I had a weird thing happen to me this morning that has kind of been going on for a few months now off and on. I wake up suddenly and feel like I'm going to pass out, then my stomach kind of burns. It scares the crap out of me. I have no clue what's going on. Beiseds that though, my legs have calmed down a little and I'm feeling better

    Thanks for asking,
    Chantel

    Last edited by hanelo4; 05-02-2007 at 10:23 PM.

     
    Old 05-02-2007, 10:14 PM   #44
    hanelo4
    Inactive
    (female)
     
    Join Date: Oct 2003
    Location: Louisiana
    Posts: 1,274
    hanelo4 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Kim, I feel the same way that you do. the signs and symptoms in Chapter 5 describe me totally, and then we have the Lyme to add to it. How are you sleeping at night? As for my dietary restrictions I think my Endoc. read Dr, Wilsons book, LOL. No bread products, noodles, white rice, potatoes, cereal, soda, coffee, chocolate. No juice, fruit or cereal for breakfast. No cakes, muffins, doughnuts. He said eat protein, veggies, nuts and olive oil dressings and lots of water. I mostly have been having trouble with the soda and coffee, because my blood sugar drops and i have no energy ever, these things kept me going. But were really very bad for me. All these things also contribute to candida, which also causes fatigue, big vicious circle!! I think this diet would also be very beneficial to Lymies too, since we deal with the fatigue and yeast, so I am doing it, the only thing I'm cheating on is the coffee, I had a few caramel macchiatos this past weekend. They are decaf and have just as much cream as coffee. That will be my weekend splurge.
    I am sorry that you are going through this too. I do understand your fatigue, and feel for you. Sarah

    Sarah,

    I se a nurse for supplements and she put me on a high protein diet with supplements. It stomped out the yeast big time back then when I was on it. Plus I lost weight which was a bonus. I have a problem getting off of caffeine period. Have you ever tried Green tea with honey in it? It is really good. I sweeten it with Stevia. It's a natural sweetener and so much better than sugar substitues. I am going to be starting up on the supplements again soon. I have to start off slow this time though because at the beginning, there is a detox and it always makes me so sick. I guess it's getting all the nasties out but I just hate being nauseated. Anyway, I just wanted to let you know that foods with protein are really good for your body. I'm sure you already know that though.

    Did your endocronoligist tell you to stay off of all that stuff? I am looking for a new one. It's hard to fina one where I live. I've been seeing an internist and they don't really know enough about thyroid.

    Chantel

    Last edited by hanelo4; 05-02-2007 at 10:15 PM.

     
    Old 05-02-2007, 10:20 PM   #45
    hanelo4
    Inactive
    (female)
     
    Join Date: Oct 2003
    Location: Louisiana
    Posts: 1,274
    hanelo4 HB User
    Re: My Lyme test results

    Quote:
    Originally Posted by sarah92202 View Post
    Kim I just started back on Biaxin 500mg twice a day, Minocyline 500mg twice a day, and Plaquenil 100mg twice a day. I was off for 2 months. My son takes the same thing. I have him on Holiday right now, he was on for 6 months, now he is off for 1, he hasn't relapsed, but still has the neck pain and fatigue. I am taking him Friday to have adrenals checked. Sarah
    Oh, my son takes the Lunesta too. He has alot of trouble sleeping. I used to have more trouble sleeping then I do now and took Elavil, now I take 5mg of Diazapam, if I don't my neck kills me in the morning.

    My doctor presribed me something for sleep too but I am not taking it yet. I think I already sleep too much even if it's during the day and I don't want to get addicted. I do however take Klonopin when needed to sleep and it helps a lot.

    Chantel

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    AGUS/AGC pap results - questions about ECC & endometrial biopsy angel4747 Cancer: Cervical & Ovarian 38 04-11-2012 11:21 AM
    Lyme bigstan Lyme Disease 2 04-30-2007 10:18 AM
    Lyme relapse questions CrazyTom Lyme Disease 6 01-13-2007 06:39 AM
    Romans12:12- Lyme VS. MS anxiousme Lyme Disease 7 08-28-2006 06:20 PM
    Is this Lyme's Disease, MS or? gg913 Bell's Palsy 7 08-09-2006 05:56 PM
    New EARLY Lyme Diagnosis? NEED ADVICE BusyKYmom Lyme Disease 3 07-10-2006 01:22 PM
    Lyme Disease? Symptoms for almost 4 years vs1988 Lyme Disease 54 04-21-2005 09:32 PM
    possible lyme disease Betterdaysforme Lyme Disease 42 01-25-2005 03:49 PM
    Missed Lyme diagnosis? Could use your input, please ~ Thanks! Peeps Lyme Disease 7 09-07-2004 11:51 AM

    Tags
    biaxin, ceftin, celebrex, flagyl, minocycline, mobic, synthroid, ultram, vioxx, zelnorm



    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 10:49 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!