posted
I had a very strong positive Westren Blot test. Can this be a false positive? I know there can be false nagatives but can there be false poitives too?
Why do they say it is a clinical diagnoses and the use of a blood test is to confirm the clinical diagoses? Is it to protect the people that have all the symptoms (and really have Lyme) but test negative for it?
I think I have most of the symptoms of Lyme and have a positive test for it. I also have a Lyme literate doctor that says I have it. My primery doctor dosen't think I have it because I've been on so many antibiotics and it only take 2 weeks to get over it. My rhumatologist doestn't think I have it because I never had a rash (I know all this is wrong information). It's hard for me to go against these doctors. What if I go aganst them and I really don't have it?
Another struggle I have is that I'm really susceptable to C-diff from taking too many antibiotics. I've had it 4 times this past year. It's really hard for me to make the descion to take more.
I'm 36 and have been diagnoiced with 15 different illnesses and have been almost completly bedridden for the past year and a half. I'm slowly getting worse all the time and am starting to feel that if something doestn't change soon I will probably die.
I'm sorry this is so long but I'm really desperate to get answers and am needing to make a descion about what to do.
Thank you for your time! Sandy
Posts: 56 | From Washington State | Registered: Feb 2006
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posted
It looks to me like you have several choices:
1. Believe the ducks and don't treat, get worse probably. Do they have something better to offer in the way of prognosis?
2. Believe the test result and the symptoms. Get treated by a good lyme doc who knows your previous history and problems with c diff.
3. Do nothing, get worse, just let it slide.
It really is a matter of making your own decision because the medical people you are consulting have given you contradictory advice.
It sounds like you don't think you are up to the fight with lyme. We can't help you find courage and fortitude. Just cheer you on if you decide to give it your best shot.
BTW, contact with ducks is energy-sapping. If you go with lyme treatment, stay away from those people if at all possible. Or if you need their help for something else and they are willing to give it, make it clear that you do not want advice on lyme/not lyme. It is off the table for discussion. If they are virulent anti-lyme, you could be putting your lyme doc in jeopardy by continuing the association with them. Any time ducks decide to they can report a lyme doc and threaten future treatment for all those patients, including you.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I ignored the ducks who told me I didn't have Lyme.
Lyme needs treatment. If you can't take abx you might consider Rife. There are lots of posts here about rife. I ordered Skyking's rife book and found it compelling. I plan to try it after I finish antibiotics in a year or so.
My advice is to ignore the ducks and do something. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
>>I know there can be false nagatives but can there be false poitives too?
There can be false anything, but if you have the symptoms and you are positive on the WB, that's pretty conclusive. False positives are far more rare than false negatives -- there isn't much reason for your body to be making the antibodies, or for the test to find those antibodies, unless you have LD. There are, however, lots of reasons for false negatives (your immune system isn't making enough antibodies; the lab isn't testing for the correct strain of bacteria, all the bands are not being appropriately included in the test, etc.)
>>Why do they say it is a clinical diagnoses and the use of a blood test is to confirm the clinical diagoses? Is it to protect the people that have all the symptoms (and really have Lyme) but test negative for it?
Pretty much. Or, said another way, the tests at best are 70-90% accurate in finding LD, depending on the Lab and the strain you have. A good diagnostician would never rely on odds like that, and would always give serious weight to clinical symptoms and history. As one of my docs said "What the hell are they obsessed with pieces of paper for? The paper ain't sick." (He was from the pre-abx, pre lab testing era and had superbly honed diagnostic skills).
Bb isn't the only issue; the coinfections can be just as bad. In general doctors are uneducated about how to diagnose and treat any of the tick-borne illnesses and are scared (and disbelieving) of the treatment protocols. And intimidated by the medical boards and the insurance companies.
If you have a good LLMD (who comes with recommendations from other patients)-- well, you need to pay attention to him/her, as the specialist in this area, rather than your other docs who have demonstrated their ignorance in this particular field.
I really understand your fear of abx. They've worked very well for me -- once I started treating the coinfections as well (VERY IMPORTANT) -- but I know others have a hard time on them. I also had problems with c. diff, but I found that garlic and a good regimen of probiotics has kept me from having more problems.
Aas hatsnscarfs said, you have additional treatment options to abx and you can research a lot of them on this board--just keep asking questions and you'll get the in-depth information you need.
Just don't let LD/Co go untreated or undertreated, and don't put off getting treatment.
Best of luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Sandy.
Oh, dear. I feel your frustration. Here's a little something that should make it easier for you.
Your primary doctor is an idiot. He doesn't think you have lyme??? Because you got over it in two weeks? What cave did he just crawl out of? This is really just outstanding. Even John Doe on the street knows better than this.
Your rheumatologist is an idiot. He doesn't think you have Lyme because you never had a rash. Oh, this is rich. Even the worst Lyme doctors in the world admit that there may or may not be a rash. Crikey, even the CDC probably admits that.
Then there's you. You're NOT an idiot because you already know these doctors are idiots and you admit to knowing this is "wrong information." But you're not quite persuaded to listen to the only doctor so far who isn't an idiot, which is your LLMD.
So, check this out.
Your western blot is NOT wrong.
You have lyme disease.
The presence of even two positive bands on western blot has a specificity of 93-96% and a sensitivity of 100% (Engstrom 1995).
You are not going to get better by putting your trust in doctors you admit have already given you ridiculously stupid information.
These doctors last read about lyme in med school texts.
A good LLMD will take very good care of you and work around the special considerations you have. Your LLMD reads and contributes to research and is rich in clinical experience with lyme patients. He benefits from the collective knowledge of other ILADS doctors and shares information with other LLMD's.
Compare that to your lame MD's that think Lyme is gone with two weeks of antibiotics.
Trust your instincts. You know what to do.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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