posted
Hi, I'm new to the world of Lyme unfortunately. I haven't felt good on and off for at least 2 yrs(probably longer) , felt like I had the flu , body aches , brain fog, knee and back pain , back being the most severe, chest pain right where my heart is and occasional palpations, hand tremors . Recently my " not feeling good " episode lasted 3 weeks and I decided to go to my PCP . She said that it sounded like I had Lyme Disease and ordered me to get a blood test . The test came back positive (in the IgG) I had reaction to the bands 30,41,45,58,66 . I took 28 days of doxycycline . After I was done I still didn't feel good so I went back to my pcp and she put me on amoxicillin and had me get another western blot test done . This time the results came back negative but bands 41 and 58 reacted . Dr said to continue taking the Amoxicillin for 28 days . I still do not feel good. Low grade fever off and on , general malaise , brain fog , body aches. I don't know if I need to see a specialist or just take the Amoxicillin and see what happens . Any and all help welcomed ! Feeling overwhelmed .
Thanks in advance
-------------------- Vicky Posts: 1 | From Pa | Registered: Sep 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up post so all can read:
Hi, I'm new to the world of Lyme unfortunately. I haven't felt good on and off for at least 2 yrs(probably longer) , felt like I had the flu , body aches , brain fog,
knee and back pain , back being the most severe, chest pain right where my heart is and occasional palpations, hand tremors .
Recently my " not feeling good " episode lasted 3 weeks and I decided to go to my PCP . She said that it sounded like I had Lyme Disease and ordered me to get a blood test .
The test came back positive (in the IgG) I had reaction to the bands 30,41,45,58,66 . I took 28 days of doxycycline . After I was done I still didn't feel good so I went back to my pcp and she put me on amoxicillin and had me get another western blot test done .
This time the results came back negative but bands 41 and 58 reacted . Dr said to continue taking the Amoxicillin for 28 days .
I still do not feel good. Low grade fever off and on , general malaise , brain fog , body aches. I don't know if I need to see a specialist or just take the Amoxicillin and see what happens .
Any and all help welcomed ! Feeling overwhelmed .
Thanks in advance
-------------------- Vicky
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Vicky, you definitely need to see a doctor who specializes in lyme disease. You will not make progress until you do because this is a very complex disease.
You would not go to a generalist for cancer, so don't do it for lyme either. Otherwise, you will be treating it the rest of your life.
Go to a very good doc and give yourself the best chance of getting rid of it and getting your normal life back.
I have sent you the information I have about doctors in your area.
I hope you are willing to travel to the Maryland/D.C. area to get really good treatment.
Welcome to LymeNet! We will help you here all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - I know you are new to Lyement, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do that, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8982 | From Illinois | Registered: May 2006
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