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Old 02-20-2007, 03:21 PM   #1
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ktp812 HB User
Doubting myself..again

I went to see my new GP today. I brought all the information from my Lyme doctor and he went through everything. He said my symptoms presented like Lyme and did agree that whatever I had was infectious but had some questions about the Lyme diagnosis. He said that most Lyme patients have joint redness and swelling. I only had joint pain. He also said that he didn't think the extreme fatigue I am still experiencing could be caused by the Lyme. I have been on antibiotics for 3 months and have definate improvement. I also have adrenal exhaustion so that is the cause of some of the fatigue. He also seemed to believe that symptoms don't just disappear or come and go. So of couse now I am doubting the diagnosis.
I had 3 positives on the WB and a CD-57 of 21. I am seeing a very knowledgeable LLMD and I know I shouldn't question him. So I guess my question is must you have swollen and red joints to have Lyme and do symptoms come and go. I have had so many symptoms in the past two years it is hard to think back. I would appreciate any feedback on this. Thanks.
Kim

 
Old 02-20-2007, 06:08 PM   #2
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Re: Doubting myself..again

Hey how are you doing. When having lyme your symptoms don't just stay they come and go. Specially when your on abx. Don't listen to your GP he's not knowledgable when it comes to lyme they just stick to what they think is true which is Bull. Don't doubt yourself keep going to the llmd and you'll get better soon. You said that you feel better when your on abx so you know that they are working. Hang in there. Also you don't have to have redness or whatever you said lots of people are affected in different ways. Listen to your llmd.



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Old 02-20-2007, 06:59 PM   #3
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Re: Doubting myself..again

Hi KIm....

something I learned after eons of years dealing with the doctors....I stopped telling each one of them what was going on with me...I got tired of hearing them pooh pooh what I had...It is kind of like if you had something such as cancer wouldn't you listen to the specialist before you did you G.P. The name right there kind of tells us...General Practioner...They have NOOOOOOO CLUE on how to treat cancer let alone Lyme...This is why there are Lyme Literate Medical Doctors...
trust your lyme doctor. And most of all trust in yourself...You live in your body and you know how you feel.

Your G.P. is wrong...symptoms do come and go...and not everyone has swollen or red joints. We all experience our own symptoms in different ranges of pain or mental problems. ect...

Your G.P. obvioulsy has no clue what he/she is talking about.....

Doctors!!!!

stick to your positive tests and what your LLMD has to say.....

Good Luck to you!!!

 
Old 02-21-2007, 04:36 AM   #4
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Re: Doubting myself..again

Thanks for your replies. I guess because I was sick for so long before I found someone that would believe me brings out the doubts again. I know I have read enough about Lyme that I probably know more than the GP. I just like to have the reassurance that he agrees with the diagnosis. I am not sure why. I trust my LLMD completely so I shouldn't have a problem with this. Plus the GP stated that I had the Herx reaction so something was going on. I see him again in 3 months so at that time I know there WILL be more improvement. This site has really given me tons of information and peace of mind!

Kim

 
Old 02-22-2007, 05:20 PM   #5
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Re: Doubting myself..again

I also need to reply and say DON'T DOUBT. I do this too and it is an aweful feeling. I have never had redness around my painful joints even when they felt like they were on FIRE. Believe the Lyme doctor and keep on keeping on.

 
Old 02-22-2007, 05:39 PM   #6
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Re: Doubting myself..again

Kim I just wanted to add something...trust me I did feel the way that you do. But I finally after years of trusting G.P.s stopped listening to them.

I had a lady doctor at one point. She and the infectious disease doctor I went to were "BUDDIES"....

Lyme did NOT exist in my area they said. She told me that I had to learn to live with what ever I had... She also took it upon herself to DOWN the doctor I was seeing that went on my symptoms and not my test. Needless to say I did stop going to her.

I also got tired of going to G.P.'s and allowing them to tell me I was depressed! OMG no kidding ....

There wasn't an antidepressant that was ever gong to make things better....but treatment and TOTAL understanding and compassion from the doctor that treated me for Lyme was what I needed. He NEVER told me it was in my head...

Been where you are...and now I would NEVER go to a G.P again. The last one I went to for my INSTANT weight gain about a year and half ago. Told me I was normal. Women MY AGE looked just like me

Hmmm...come to find out my Epstein Barr (mono) and Cytomeglovirus...and t-3 were off. I was tested by a Fibro/chronic Fatigue specialist doctor.

Okay guess I had better hush now...getting ticked thinking about the run around they seem to put us through...all because THEIR lack of knowledge and understanding....ahhhh!!!

Hugs to you!

 
Old 02-23-2007, 12:44 AM   #7
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Re: Doubting myself..again

Hi hun

You posted that your t-3 was off. Do you have thyroid problems?

Chantel

 
Old 02-23-2007, 04:50 AM   #8
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Re: Doubting myself..again

JoJo

I could totally relate to your post. I was told I had CFS, was a depressed, bored 49 yr old woman. I was given names to psychologists to see. I told my former GP that no one can help me unless they find the cause of my illness. I told him I was Sick and no amount of therapy was going to help that. I went through this for almost 2 years before finding my LLMD. On my first office visit he told me I wasn't crazy, it wasn't in my head and he was going to find the reason. I think he saved my life.
I know I shouldn't believe everything the new GP says. I mean he hardly knows me or what I have been through. I guess it isn't just the GP, but trying to get co-workers, friends and even family to believe me was just as stressful. So now of course I am once again reading everything I can about Lyme just to be sure. Your posting made me feel much better and I really appreciate you taking the time to write. It has only been 4 months since I was diagnosed so I am still in the what if it is something else thought. I have had total exhaustion since starting the abx and that is really frustrating too. Thank you so much again. This site has so much information.
Kim

I was diagnosed with hypothyroid in October and am also on medication for that. My adrenals are basically not working either so I have other things going on too.

 
Old 03-16-2007, 03:28 AM   #9
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Re: Doubting myself..again

Quote:
Originally Posted by ktp812 View Post
I went to see my new GP today. I brought all the information from my Lyme doctor and he went through everything. He said my symptoms presented like Lyme and did agree that whatever I had was infectious but had some questions about the Lyme diagnosis. He said that most Lyme patients have joint redness and swelling. I only had joint pain. He also said that he didn't think the extreme fatigue I am still experiencing could be caused by the Lyme. I have been on antibiotics for 3 months and have definate improvement. I also have adrenal exhaustion so that is the cause of some of the fatigue. He also seemed to believe that symptoms don't just disappear or come and go. So of couse now I am doubting the diagnosis.
I had 3 positives on the WB and a CD-57 of 21. I am seeing a very knowledgeable LLMD and I know I shouldn't question him. So I guess my question is must you have swollen and red joints to have Lyme and do symptoms come and go. I have had so many symptoms in the past two years it is hard to think back. I would appreciate any feedback on this. Thanks.
Kim

 
Old 03-16-2007, 03:41 AM   #10
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Re: Doubting myself..again

Quote:
Originally Posted by ktp812 View Post
I went to see my new GP today. I brought all the information from my Lyme doctor and he went through everything. He said my symptoms presented like Lyme and did agree that whatever I had was infectious but had some questions about the Lyme diagnosis. He said that most Lyme patients have joint redness and swelling. I only had joint pain. He also said that he didn't think the extreme fatigue I am still experiencing could be caused by the Lyme. I have been on antibiotics for 3 months and have definate improvement. I also have adrenal exhaustion so that is the cause of some of the fatigue. He also seemed to believe that symptoms don't just disappear or come and go. So of couse now I am doubting the diagnosis.
I had 3 positives on the WB and a CD-57 of 21. I am seeing a very knowledgeable LLMD and I know I shouldn't question him. So I guess my question is must you have swollen and red joints to have Lyme and do symptoms come and go. I have had so many symptoms in the past two years it is hard to think back. I would appreciate any feedback on this. Thanks.
Kim
Hi Kpt12
Sorry you are feeling bad
In the beginning I only had really bad fatigue and pain in my legs and joints then as the lyme progressed I had really bad swelling in my left knee thought it was from an old injury put a knee brace on it and my ankle swelled way up cd-57 60 normal is I believe 60 to 285 with 3 months oral abx went up to 92 21 is not normal My symptons used to come and go but have stayed with me since dec when my brain went in the fritz Some days better than others but really improving with IV therapy Mind is sharp once again Some trouble but not as extreme as before brain gets foggy only when I push myself too much rest helps this I also never show inflamation in my test even though my joints swell and muscles tighten especially in my foot and leg so if you are improving on meds stick with it Are you taking supplements to help boost your immune system
Wishing you better health and keep trying it takes a long time
ryebeach

 
Old 03-16-2007, 04:04 AM   #11
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Re: Doubting myself..again

hi ryebeach
I am still hanging in here. I just saw my LLMD yesterday and he is going to change up the meds a little. I am going on ceftin and off amox/probenecid. I am staying on the Ketek for now since that seems to be the one doing the trick. I have my liver enzymes checked every two weeks and if it goes up then I will go to zithro/plaquenil instead. My adrenals are shot and he said that is causing most of the exhaustion/fatigue. I have about 5-6 good hours and then I am done for the day. I know that cortef is bad for people with Lyme but he has me on it since I have hardly any adrenal output. I have had a sore throat since starting the Ketek (4 months) and he just said there is a massive die off going on which is exhausting the adrenals even more.
I felt really good after the visit. I told him I was beginning to feel hopless and he said he would get me well. He is a great doctor and knows just what he is going to do. I think if the adrenals weren't so bad off I could cope a little better. Thanks for taking the time to write. I am feeling a little better about things now that I have seen the doctor again. It is sooo hard to keep a positive attitude about this whole thing. I do take lots of supplements-probably too many but they were all recommeded by my LLMD. I hope you are doing better and please keep me posted on your progess also.
Kim

 
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