April 1st I found a tick...developed symptoms..went to my family doc..he gave my antibiotics..and tested for Lyme.
Test came back negative. I still have symptoms..
He prescribed me steroids and said I may have Lupus. He said there's no way I can have Lyme since the test was negative.
I have read not to take steroids because it makes things worse. Am I correct?
I do have copies of my lab tests and results.
Posted by sixgoofykids (Member # 11141) on :
You are correct. Do not take the steroids and get to a doctor who is Lyme literate ASAP!
Lyme tests will not come out positive if done right after a bite .... it takes time to build up the antibodies.
You need to stay on abx -- preferably doxy 300-400 mg per day.
You do NOT want to take the risk of becoming chronic.
If you don't have enough doxy to last you until the LLMD appt. you schedule, then I'd go to a walk in clinic and tell them about your bite. Maybe you'll get lucky and get a doctor who will give you more (I wouldn't tell them you already have some).
Posted by Lymetoo (Member # 743) on :
DITTO what "six" said!!! Ditto, ditto, ditto!
Posted by adamm (Member # 11910) on :
DO NOT TAKE THEM! A tick bite + the appearance of symptoms
afterwards almost always means Lyme, and steroids will
make your case INCURABLE!
Posted by daise (Member # 13622) on :
Heidimi,
You've been before a duck. Quack!
He prescribed steroids. You mean like prednisone or whatever?
I'm not a doctor, I have no medical training, but I'm going to say it anyway. Don't take the steroids. OK? Steroids wreak havoc in the human body.
(Except for low doses of bioidentical ones, for certain conditions, to replace what your body isn't making.)
He was wrong to say that you don't have Lyme because of a negative test. There is NO test that is 100% accurate.
Although, if you are positive by a western blot (sent only to IgeneX in Palo Alto, CA ) then you have Lyme.
I imagine you got the ELISA (Lyme Titers blood test.) Way too many do not test positive who should and some who don't have Lyme, test positive.
It's used by some insurance companies to deny treatment. You can bet it's always used by conventional doctors, with some very few exceptions.
Because testing is a problem, Lyme is a clinical diagnosis. An LLMD can give you this assessment. No other doc is capable, but Lyme-literate MD's (LLMD's.)
Lupus? Wait a minute. We hear the word, "lupus" a lot. And MS, alzheimers, fibromyalgia, heart attack and much more. There is no sure-fire test for lupus.
First, infectious disease doctors do not take Lyme seriously, but for a precious little handful.
Second, please get yourself an LLMD who is also an ILADS doc. You can post for one in the forum here for Seeking Doctors. Sometimes insurance pays for one ... sometimes not.
You might also go the top of this page, to the leafy menu on the left, and click "Support Groups." Contact them and also ask for LLMD's. Then, you can compare notes.
It's best if you feel comfortable with your doctor.
Did someone mention to go to www.ILADS.org, to the left menu, to "Treatment Guidelines" and click that? That'll get you to Dr. Burrascano's 33 pages of tips for 2005. Essential: print!
I wish you the best.
daise Posted by bettyg (Member # 6147) on :
heidi, YOU GOT A REAL DUCK! DON'T listen to what they have to say.
closest LLMDS to you are s. missouri and louisiana. post in seeking drs. which one you want to go to, put the STATE IN SUBJECT LINE ok . we'll get you info pronto!
you were recently sent my newbie package. do a search using EDIT, FIND, and type in SERO NEGATIVE; hit enter and look for article about negatives coming back vs. positives; it explains it there. good luck. Posted by METALLlC BLUE (Member # 6628) on :
Correct, post lab results.
Posted by Lymetoo (Member # 743) on :
Where's Heidi?
Posted by notkrazybrian (Member # 10621) on :
what are your specific symptoms? posting the lab results may help only if he did a western blot. do you have a + ANA. Whats the dosing of steriod he gave you? brian
Posted by WildCondor (Member # 434) on :
The doctor you saw is totally clueless and has not the slightest clue about tick borne illness. Run far...far...away from this idiot and seek our a LLMD who knows what they are doing! LOL @ Lupus, that's classic, and most of us have been told we have that "mystery" illness and the body is attacking itself for no reason line of BS. Read and educate yourself!! You should have began 400 mg on the day you found the tick in you! DO what you have to do to get treated right away, but seek out proper care or else you will just go down a long, scary road of mis diagnosis and idiot doctors and waste $ and time. We are here to help!!!
Posted by chamade (Member # 11472) on :
This criminal should have his license suspended.
Posted by Lymetoo (Member # 743) on :
Heidi....Please get on antibiotics before it is too late!!!!!!!!!!!!! Posted by notkrazybrian (Member # 10621) on :
get second opion, maybe a third, dont take meds until you know whats wrong. can we remember not everything is lyme disease please, brian
Posted by hcconn22 (Member # 5263) on :
Lupus is a CLINICAL DX.
Lyme is a CLINICAL DX.
Your Dr took the easy and mis-informed route.
Since you had a tick bite, then symptoms-- why in the world would you have Lupus. And not Lyme.
Lyme disease CAN NOT be ruled out by a simple negative blood test. This test at best is 25% accurate.
Lupus also CAN NOT be confirmed by a simple blood test.
Also get a copy of your Western Blot test. You may have had one or more positive bands, which means you have been exposed to Lyme, but not technically positive according to OLD/Outdated screening, not diagnostic criteria. Post your Western Blot test results here and you will get feedback ASAP.
DO NOT Take steriods if you think you have Lyme, or you will end up with super-lyme.
Get your labs and Go to a LLMD and get a second opinion. You are too young to be sick for the rest of your life.
Posted by HaplyCarlessdave (Member # 413) on :
quote:Originally posted by heidimi: April 1st I found a tick...developed symptoms..went to my family doc..he gave my antibiotics..and tested for Lyme.
Test came back negative. I still have symptoms.. [QUOTE]Originally posted by heidimi: [QB] He prescribed me steroids and said I may have Lupus. He said there's no way I can have Lyme since the test was negative.
----You are clearly dealing with a liar and a charlatan! A doctor who reports test results must at least include info about the expected accuracy of the test! Whether he or she gives correct information is yet another matter! But to just tell you that "the test was negative" is very negligent, unless, perhaps, you were a child who really could not understand.....
quote:Originally posted by heidimi: I have read not to take steroids because it makes things worse. Am I correct?
Yes!!
quote:Originally posted by heidimi: I do have copies of my lab tests and results.
--That is good; however, even if they are correctly interpreted, they will not show as "positive" if the blood was taken too short a time after infection. The symptoms you report, along with the circumstances, are a much more reliable test for Lyme, it would seem. I hope you can get appropriate treatment soon! Promptness of correct treatment makes a HUGE difference. DaveS
Posted by SouthernCO (Member # 11167) on :
If you suspect Lyme, NEVER, NEVER, NEVER take STEROIDS. Get to an LLMD.
An epidural steroid injection in the lumbar spine 4 years ago (before Lyme diagnosis) caused 4 years of terrible knee and lower leg pain/weakness. Now the pain is progressively getting worse and I'm afraid it is permanent.
Has anyone out there ever recovered from steroid damage?
Best of luck to you, Dave
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: Heidi....Please get on antibiotics before it is too late!!!!!!!!!!!!!
Heidi....Please reply here so we know you've seen this.
Southern CO, I took steroids when I was being treated by a rheumatologist 15 yrs ago [before I knew I had lyme].
I survived somehow, but I know the steroids did nothing GOOD for me! [yes, they helped me at the time....but what did it do to my immune system?]
Posted by heidimi (Member # 15170) on :
Thank you all for your wonderful replies. I decided to not take the steroids! I just don't feel it would be a good thing.
My symptoms are coming and going and when I have muscle pain now it hurts bad. I started to have frequent fevers (not sure if it is from Lyme).
I am seeing if my insurance will pay for another DR visit with a specialist.
I am so surprised by the lack of information doctors have. It is sad when you pay your co-pay so you can treat/ diagnose yourself for your doctor.
Thank you all again!! Heidi
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by heidimi: Thank you all for your wonderful replies. I decided to not take the steroids!
Whew! Thank goodness! Doctors throw that stuff around like it was candy!
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