posted
I was treated from Lyme disease back in 2001. I had a positive Elisa and Western blot. My PCP (non-llmd) is aware of this because she had to give approval from my insurance to cover my IV antibiotics back then.
My question is, because I have a positive Elisa and Western Blot again this time (exact same results as in 2001 on the WB, see below) does that defintely mean I have been either bitten again or that this is a relapse of my original infection? Will an illiterate doctor say to you "well you had lyme before, you will always test positive."
I am trying to prepare for my follow up visit with her. She has to give me a referal to my LLMD for my insurance to cover it and I am not sure what she might say to me.
Test results:
Lyme Disease PCR - No B. Burgdorferi DNA Detected
Lyme, Total Ab Test/Reflex (Positive) Lyme IgG/IgM Ab 1.30 High
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Yes you could be reinfected or relapsed. Get a LLMD and have that Dr prime you a week with high dose abx then do a western Blot and a 3 day urine test at Igenex.
Will an illiterate doctor say to you "well you had lyme before, you will always test positive."
Almost everytime
Lyme is a clinical diagnoses. Are you having any symptoms?
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
most definitely having symptoms. My pcp has put me on Doxcy 100 mg twice a day for 3 weeks. I told her I wanted to see my Dr. who treated me last time and she said to give it a week on the abx and then she would give me the referral. She gave me Ultram for the pain, which helped last time and is making it tolerable enough to get through my day. I am also super tired all the time!! Just want to put my head down and sleep. I have already scheduled the appointment with my LLMD for Wed 8/15.
Everything started in January and I tested positive for EBV, not Mono, which Mono was the diagnosis because all of the lymph nodes in my neck and shoulders were enlarged and I wanted to sleep all the time. The sleepiness and lymph nodes lessened for a little bit but then all hell broke loose and now I am achy all the time, my fingers, wrists, elbows, hips, ankles etc are all very stiff and just hurt to use. My hands and feet are swollen in the mornings and I am back to having trouble falling asleep. Seems like it all came back so quick!
I have a positive western blot now, don't think I have to do an Igenex test.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If she said to give it a week on the abx then she'd give you the referral, it doesn't sound like you'll have a problem to me. Just be sure you still have all those same symptoms in a week ... which, unfortunately, you most likely will.
I'm glad you're seeing your LLMD so soon.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My LLMD who treated me last time, I wasn't to fond of, but he did treat me aggressively. I am just worried about the new guidelines and how that will affect some doctors decisions on treating. Especially since I am trying to use my health insurance. It would really put me in a super bind because to have to pay out of pocket because I just bought my first house and I work a small part time job in addition to my full time job. The lyme is starting to make it hard to do my part time job and that is really going to hurt if I have to give it up.
I am just really scared and I am freaking out about everything.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My health insurance is paying for all my meds. I haven't turned in my LLMD bills yet for two reasons -- one, I've been too sick to care, two, I'm afraid if the insurance finds out it's Lyme they'll stop paying and the meds are more expensive than the doctor.
My Lyme is responding well to orals, so the insurance co. hasn't had too many questions about it.
Just try to relax, get plenty of rest, and quit worrying about it. The stress makes it worse. Hopefully, it will be easier this time around.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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It actually is already easier this time because I knew which doctors to start with and what pain med would help to start. I don't have to hear from 10 different doctors that I am crazy.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
dizzy, first, there are no stupid questions. it's how we all learn, so ask away....
i got a referral from my primary and went to an infec doc. she treated me for several months and i was grateful for that.
she then finally told me she didn't think i had lyme at all.
what a waste of about 8 months....
keep looking and find yourself a real good llmd. they seem to be the only ones who really believe in lyme, nobody else does.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
This particular ID doctor is an LLMD. I got his name by refferal from one of the lyme sites. I think he was just dry and I didn't feel all the comfortable with him. But like I said he did treat me aggressively and when one thing didn't work he would switch it. I had a long (i guess you would call it) remission so he must have done something right. So I think I will start with him and see how it goes.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
If you're still working two jobs, you caught it early this time around, and like you said, you don't have to hear that it's all in your head for years on end!
We caught it early in my daughter ... well, not really early, but before she got really sick from it ... and she is totally herself during treatment. She herxes, but can still get around like a kid during a herx. She rests a little more and has a bit of Lyme rage during herxes, but she still plays with her friends.
I think you'll do fine. With some aggressive treatment, you'll be in remission again in no time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you again to everyone for your support.
I know there are thousands of people that are a lot worst off then me. I have been lucky in the fact that my lyme has not totally incapacitated me. The lyme rage is definitely not party my personality nor the not socializing with my friends and crankiness but other than that my first infection and now the relapse could be sooooooo much worst. The joint pain and swelling is a lot more pronounced this time and seems to be getting worst at a faster rate but I will handle it in my normal, collective and responsible way.
I guess I have also been lucky in the fact that my blood tests have come back positive the two times(2000 and now) when I was finally tested. Guess that makes it much easier to start treatments.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
This should help with the inflammation and joint pain:
Most Vitamin Shoppe's stock it, but it's easy to find online also.
Feel better
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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posted
Thank you. There is a Health Food Store right around the corner that the website search says sells this product. I will try it.
-------------------- Life is too short for drama & petty things, so kiss slowly, laugh insanely, love truly, forgive quickly and rejoice in the fact that most of us are indeed unstable. Posts: 59 | From Laurel, MD USA | Registered: Jan 2003
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Hopefully, it will be easier this time around.
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