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ktp812 05-17-2007 09:19 AM

Re: My Lyme test results
 
Hi Chantel and Sarah
I just returned home from my appt. We mostly discussed Lyme and why I am not feeling much better. He wants me to keep on for one month and if there still isn't any improvement then I have to go on IV. He is looking into setting it up for me. My husband can do the infusion but I have to go to the hospital for the line. He is really disappointed that I am not better. I told him I still have the sore throat constantly and he said that is from the lyme bugs being killed off. I asked for another WB and he agreed so I had that done this morning.
My sister went to a LLMD just yesterday and he told her that just about everyone will come up positive with the 41KD and in no way does it indicate Lyme disease so he won't treat her. She had no other + or IND. Just the 41. So I don't know what she is going to do.
My doctor will do the CD-57 after he gets the WB results. It should be interesting. I am still not convinced I have Lyme either. He said the only thing that depresses the T-cell is Lyme and syphillis so I just am so unsure. He wants me to continue on the cortef and still says he is sure it will help me. It is just taking longer because I am fighting the Lyme too. So that is it from here. If he calls with my results I will let you all know. It will probably be a few weeks though. Take care and I will keep in touch.
Kim

sarah92202 05-17-2007 09:31 AM

Re: My Lyme test results
 
[QUOTE=ktp812;2988***]Hi Chantel and Sarah
I just returned home from my appt. We mostly discussed Lyme and why I am not feeling much better. He wants me to keep on for one month and if there still isn't any improvement then I have to go on IV. He is looking into setting it up for me. My husband can do the infusion but I have to go to the hospital for the line. He is really disappointed that I am not better. I told him I still have the sore throat constantly and he said that is from the lyme bugs being killed off. I asked for another WB and he agreed so I had that done this morning.
My sister went to a LLMD just yesterday and he told her that just about everyone will come up positive with the 41KD and in no way does it indicate Lyme disease so he won't treat her. She had no other + or IND. Just the 41. So I don't know what she is going to do.
My doctor will do the CD-57 after he gets the WB results. It should be interesting. I am still not convinced I have Lyme either. He said the only thing that depresses the T-cell is Lyme and syphillis so I just am so unsure. He wants me to continue on the cortef and still says he is sure it will help me. It is just taking longer because I am fighting the Lyme too. So that is it from here. If he calls with my results I will let you all know. It will probably be a few weeks though. Take care and I will keep in touch.
Kim[/QUOTE]

Kim, hi:wave: Are you serious, the LLMD said that about the kDa41, that goes against everything that I have heard. I took my son to an LLMD other than Dr. Jones to be treated in between our 6 month visits with him, and as soon as she saw the 41 band ++ on my son's she said he had LD, and he doesn't have many other bands pos. only 65 pos. and 31 IND on IGG and 30, 34 pos. on IGM 39 & 41 are IND on IGM. So he has had two LLMD's diag. with LD by 41 band. Maybe she should get a second opinion. I know this disease is so confusing, and so many different things are said, UHG:mad: I completely trust Dr. Jones diag. though. And my bands are similar to my son's and I saw Dr Steven Phillips (who used to be the pres. of ILADS and has done years of research on LD and he diag. me with LD and so did the LLMD that we are seeing in between our CT visits.
I am sorry that you are not feeling better, tell me again what you are taking, having a Lyme brain moment. I know you are on the Cortef for AI, but what for LD? Keep in touch on this board or the Addison's board, Sincerely Sarah:wave:

ktp812 05-17-2007 02:42 PM

Re: My Lyme test results
 
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

sarah92202 05-17-2007 05:06 PM

Re: My Lyme test results
 
[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:

ktp812 05-17-2007 05:25 PM

Re: My Lyme test results
 
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

sarah92202 05-17-2007 05:40 PM

Re: My Lyme test results
 
Kim, yes let us know what other tests the LLMD ran on your sister. Do you think that the 2 of you possibly got LD at the same time? Is she more inclined to believe that she has LD since you do? Are you two having the same symptoms? Sarah

ktp812 05-18-2007 10:59 AM

Re: My Lyme test results
 
Sarah
I will find out what test my sister had. I am not sure she even knows, just that it was a lyme test and not WB which she already had. I don't think we got lyme at the same time. I have been married for 30 years and her 25. We did spend summers in Maine when we were growing up. She has more symptoms of pain and I just have a bunch of other ones. I only had joint pain for 10 months but she has had it for over two years. I am hoping she will ask for the CD-57 when she goes again. I am not sure he would even do it. He is a lyme arthritis specialist. She lives near Boston so she has been to see some good doctors. They want to diagnose her with Fibro and MS but really haven't yet. I will keep you posted.
Kim

hanelo4 05-23-2007 03:17 PM

Re: My Lyme test results
 
[QUOTE=ktp812;2988***]Hi Chantel and Sarah
I just returned home from my appt. We mostly discussed Lyme and why I am not feeling much better. He wants me to keep on for one month and if there still isn't any improvement then I have to go on IV. He is looking into setting it up for me. My husband can do the infusion but I have to go to the hospital for the line. He is really disappointed that I am not better. I told him I still have the sore throat constantly and he said that is from the lyme bugs being killed off. I asked for another WB and he agreed so I had that done this morning.
My sister went to a LLMD just yesterday and he told her that just about everyone will come up positive with the 41KD and in no way does it indicate Lyme disease so he won't treat her. She had no other + or IND. Just the 41. So I don't know what she is going to do.
My doctor will do the CD-57 after he gets the WB results. It should be interesting. I am still not convinced I have Lyme either. He said the only thing that depresses the T-cell is Lyme and syphillis so I just am so unsure. He wants me to continue on the cortef and still says he is sure it will help me. It is just taking longer because I am fighting the Lyme too. So that is it from here. If he calls with my results I will let you all know. It will probably be a few weeks though. Take care and I will keep in touch.
Kim[/QUOTE]

Kim,

How are you hun? Has the doctor decided yet what he will do about the IV? Are you feeling any better yet?

Also, my doctor told me that band 41 is specific for Lyme disease. A lot of people here say that too and that all comes from different doctors around the world. If I were your sister, I would get a second opinion.

Hugs,
Chantel


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