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



Lyme Disease Message Board


Lyme Disease Board Index


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
[QUOTE=ktp812;2956232]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[/QUOTE]

Kim, we are kind of at a catch22 huh, have you had any bad side affects from the Cortef? I am so afraid to take it. I'am going to stick to this pregnenolone, Biotin, WobenzymN, trial for a little while and see if it helps. I honestly don't know how I am making it through the day, not very well I would say. But I have noticed more energy with the W-N. I woke up before the alarm today and stayed up, alot of times the alarm goes off and I just turn it off and go back to sleep. I did do more this past weekend than usual, but my husband noticed me spacing out and weaving in Hobby Lobby and took me out of there quick to go eat. I feel exhausted all day everyday, no better in the morning or at night. I'm going to have my husband read your post because he doesn't understand how bad I really feel. He has been more understanding since seeing my latest test results though. Has your doc given you diet restrictions? UHG!:mad: I'm hating this! Have you ever read the book Adrenal Fatigue The 21st Century Stress Syndrom by- James L. Wilson? It is a very informative book, I would recommend it to anyone, even Lymies, I would bet we all have some type of adrenal problems.
In my honest opinion I wouldn't take amox. it is a cell wall inhibitor, meaning it causes the spirochetes( not all) to hide in the cell walls during treatment and then when you stop they come back out into the bloodstream and multiply. The best choices are doxy, zythro, Biaxin, minocycline, and for cyst form- Flagyl, tinidazole, paquenil. Also I was looking up some stuff about Zelnorm being pulled of the market and it mention Ketek also, it is causing severe liver damage. So, please check into that before you take it, Sincerely, Sarah:wave:
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
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
[QUOTE=ktp812;2968772]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[/QUOTE]

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
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
[QUOTE=ktp812;2956232]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[/QUOTE]

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
Hey Sarah
Yeah, that is what her doctor said. I am not sure if that was because it was the only positive or what. He never even bothered to do the CD-57. I told her she should have that done anyway. My doctor didn't really diagnose me with Lyme until he saw the results of the CD-57. I only had two IND and my 41 was +++. The thing is that her doctor is suppose to be a top notch one. I don't know his name but he is in Mass. and it isn't Dr. Donta. She has been sick for over 3 years.
For Lyme I am taking right now Ketek and Amox/Probenecid. I was taking Ketek and Ceftin but felt I was making better progress with the Amox combination. Hopefully I won't have to go to IV next month. I had a long day today with doctor appt. and I also had to go to my hospital and have my blood drawn for the liver enzyme test. I am really tired tonight. I hope you are feeling better and I will definately keep in touch.
Kim
[QUOTE=ktp812;2989569]Hey Sarah
Yeah, that is what her doctor said. I am not sure if that was because it was the only positive or what. He never even bothered to do the CD-57. I told her she should have that done anyway. My doctor didn't really diagnose me with Lyme until he saw the results of the CD-57. I only had two IND and my 41 was +++. The thing is that her doctor is suppose to be a top notch one. I don't know his name but he is in Mass. and it isn't Dr. Donta. She has been sick for over 3 years.
For Lyme I am taking right now Ketek and Amox/Probenecid. I was taking Ketek and Ceftin but felt I was making better progress with the Amox combination. Hopefully I won't have to go to IV next month. I had a long day today with doctor appt. and I also had to go to my hospital and have my blood drawn for the liver enzyme test. I am really tired tonight. I hope you are feeling better and I will definately keep in touch.
Kim[/QUOTE]

Kim, being that she is in Mass. where there are other LLMd's in close proximity, I would suggest that she get a second opinion. I can't believe he didn't run a CD57, that's unusual. I just read another post from a gentleman that is seeing an LLMD in Mass. that is not very happy with his LLMD, I wonder if it is the same doc. I have read that the Ketek causes severe liver damage, have you have problems with it? Is that why you are going in for liver enzyme test? I'm glad that you are making progress, we will get there eventually:) Take care of yourself, Sincerely, Sarah:wave:
Sarah
I have my liver enzymes tested every two weeks. I have been on Ketek since Novmeber. If they start to go up too high he will take me off and switch to something else. So far I have had no problems at all with it. I know it has had some real bad reviews but my doctor says in his opinion it is the best abx for Lyme. I had to sign a release form before I started it but he did say if I was going to have real problems they would have already happened. Still, I have the blood test twice a month to be sure. I did speak with my sister today and she said he did some other lyme test on her. She didn't know the name of it. I will try and find out. He is a lyme doctor that specializes in lyme arthritis because they thought my sister had RA. I will post when I get my new test results. Take care
Kim





All times are GMT -7. The time now is 11:33 PM.





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