posted
I hope I spaced this correctly. Please let me know !
Hi All ! I am new here and I posted over in " seeking a doctor " section and I want to thank everyone that PM'd and responded for the advice and for taking the time to help.
I would love to respond to everyone individually, but it's difficult for me to type because of loss of cartilage in my wrists and I have been feeling completely awful?
So thank you ALL ! And thank you bettyg for the Newbie Links.
I am trying to read as much as I can in the moments I feel well ( which is about never ).
I have some questions about my tests results. I was tested by IGenex lab. Here is a summary :
PCR Test Sample : Whole blood & serum
Genomic - B burgdorferi NEGATIVE Plasmid - B burgdorferi NEGATIVE
IgM Western Blot
Igenex Reslut : NEGATIVE CDC/NYS Result : NEGATIVE
30kDa + 58kDa +
IgB Western Blot
Igenex Reslut : POSITIVE CDC/NYS Result : POSITIVE
I was diagnosed with RA in 2002 in college. It never really fit the bill because I never had elevated RA factor.
Nor did my blood ever show inflammation despite my joints being red and hugely swollen, and the joint pain and swelling is very very migratory.
It also never explained my terrible muscle pain. So I went through EVERY medication possible and it all almost killed me.
I am now dibilitated at 26. I can't get out of bed. I have tons of cartilage loss. I am just so sick. I am in bed all day. Ican't even get the covers off myself in the morning.
I am living at home since college. My parents are wonderful and take care of me !
I decided to try an INtegrative approach.
I see a doc who is the head of emergency medicine in the major hospital in the city where I live. He has a private practice that is a wonderful Integrative Care Center.
he was trained in Integrtive Medicine by Dr Andrew Weil. He is the one that tested me for LYME and was convinced I had it and was going to treat me for it even if the results came back negative.
He is such a wondeful doctor. He really cares about the body mind and spirit. Each appt. I have is with 2 doctors at the same time and usually lasts an hour and I can email him at any time.
Anyway, I digress. He is going to put me on 2000 mg of Roecephin. I am getting a PICC line put in tomorrow ( I am terrified ).
So I get a call from my Rheumatologist saying that he hates the lab I got tested at.
He says the results really don't mean anything and doesn't say anything about the intensity of the LYMe and that I must have got bitten a minimum of 6 years ago.
He also says he doesn't like the antibiotic I am going to be on. He would put me on Doxycyclyn because Roecephin will ruin my Gallbladder.
I know I got bit 10 years ago. I was at a ballet summer program and I awoke with a bullseye rash/bruise on my hand with a white bump in the middle that didn't hurt and lasted for 4 weeks.
I went to see a doc and he said because the color was a darkish brown ( looked like a bruise ) it wasn't a tick.
I always thought in the back of my mind it was LYME but I had been tested so many times by my Rheumie I began to believe it wasn't.
My questions :
Why would my Rhuemie say this ?
Is he right ?
I am positive, right ? I thought the tests says so.
How come the PCR says NEGATIVE ? How can that be ?
I am sorry for the long long email. I wanted to giva a bit of context and some of my symptoms. Thanks you for your time and for this wonderful website and message board.
Jamie : )
[ 22. March 2007, 01:42 PM: Message edited by: jamlizarc ]
Posts: 8 | From saratoga springs, n.y. | Registered: Mar 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Welcome to Lymeland. Your tests look very positive to me. As sick a you describe yourself, IV Rocephin may be a good place to start. Be aware that you may herx and possibly ahve to cut back on the dosage.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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From the above link: "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
It's important to know that screening tests like the EIA, ELISA, IFA and PCR can be negative even when the Western blot (confirmatory test) is positive."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome!
You're postive. I don't know about you, but I was celebrating the diagnosis ... not that I had Lyme, but that I finally knew what was wrong!
I'm 2 months into treatment. It gets tough sometimes, but it's good to know we're going to get better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
welcome jamie; glad you found the links/advise helpful! so much to obsorb; do it in bits and pieces when you are feeling better. highlite the things you want to know about now; check off as you read. i never can remember what i've read or not; that's my reminder!
think i read something where 2 drs. are with you for your entire visit! wow, double billing!
tutu/lymetoo's explaination of western blot igm and igg is the best we have found in user-friendly language.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome dear one...
Folks have been giving you GREAT information.. as they usually do. So I have only one thing to add right now. ````````````````````````````````````````````````
I'd rather shoot myself in the foot than got to a neurologist for Lyme.
I'd rather shoot myself in BOTH feet than go to an infectious disease doctor.
If I had another foot.. I would shoot myself in it before going to a Rheumie.
posted
Jamie: My bullseye looked like a bruise too (this past summer) and I have gotten the same runaround. You can still see where it was and despite all my symptoms my GP still says it was a bruise (WB was neg but symptoms continue to get worse every week). I have read that on darker skinned people (I have indian in me and tan real dark) it sometimes appear more as a bruise than a rash.
Posts: 32 | From INDIANA | Registered: Sep 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
About the gallstones. I haven't taken Rocephin myself but I understand that it's a good idea to take Actigall (I think it's called that) to prevent gallstones while on the Rocephin.
Stay away from that ignorant Rheumie and perhaps pay him a visit when you're much better thanks to you Lyme treatment/antibiotics.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Rheumies would have to face that they spend their entire careers treating a large % of their patients with the things they shouldn't (steroids!) and that they let people DIE who could have been saved by not getting hip to TBDs. There are not that many people who can transition psychologically that way and live with themselves so they have a lot of denial and ego that will keep them rooted very strongly AGAINST Lyme & TBDs!!!!!!!!!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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