posted
I am so very frustrated... tested positive for lyme in september... already have a never disease and have been on hold trying figure out my Liver so was diagnosed with Autoimmune Hep and now am trying to get off the prednisone but I hurt all over.... went to unc rumatologist and he says I am false positive and it is my Liver that is causing all the Pain! he will tell me that I need pain meds that have no tylenol or montrin in them but won't perscribe them....he sent notes to my primary physician and she is saying she won't be able to help me!!! I need to get out of PAIN!!
Posts: 2 | From CRYSTAL COAST NC | Registered: Jun 2011
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posted
NEED TO FIND A DOCTOR???!!
Posts: 2 | From CRYSTAL COAST NC | Registered: Jun 2011
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
I'm so sorry that you're going through this. My first suggestion would be to post in seeking a doctor and find yourself an LLMD...lyme literate MD. It seems you are dealing with doctors who haven't a clue what they are talking about...very common thing to happen with this disease.
You are on prednisone, which is a steroid and from all that I have read, this is one of THE worst meds for you to be on right now. Steroids are like the devil for those of us who have lyme disease. They are immune suppressants and the last thing you need right now, is a suppressed immune system.
As far as autoimmune issues go, it is common for those of us with lyme to develop autoimmune issues.
Unfortunately, I don't have much advice for you on pain management. My pain is tolerable and I manage fairly well in that department. Hopefully, someone with more experience regarding pain will come along and offer you some advice.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
A false positive is very difficult to get. A false negative is much more common. So, I hope you find a doctor who understands that you have Lyme!
A friend of mine recently got a "false positive" and I tried, unsuccessfully, to explain to her why it was probably a true positive. If you can remember high school/college statistics, it all boils down to basic Type I versus Type II error-- if one is high, the other is low, so it's a trade-off. The way the Lyme diagnostic test was designed, unfortunately, it has a very high false negative rate and a very low false positive rate, meaning that thousands of cases get missed.
So in short, never underestimate a positive result! It's the real deal!
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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posted
I just wanted to mention that autoimmune hepatitis may be caused by gluten, and may just go away on a gluten free diet.
I have not researched the subject, but I think it is not advisable to go off prednisone or any medicine for the autoimmune hepatitis, unless the doctor says okay or it is possible to use another medicine.
Medical writer Elaine Moore has written about autoimmune hepatitis and its relation to gluten, her books may be in the library, and she is on some thyroid forums (hyperthyroidism and graves disease) and she will answer eventually
Posts: 366 | From Europe | Registered: Nov 2008
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A false positive test for lyme is rare. What does "on hold trying to figure out my liver" mean? Were there concerns in your bloodwork over liver function? I am not a doctor, but there is an herbal supplement called "milk thistle" that can help with the liver function. Many of us on prescription meds take it because it helps the liver flush toxins from the body. It's legitimate, the extract of this herbal is used in pharmaceutical grade drugs for the exact same purpose.
Welcome to Lyme land. Expect to be dicked around a lot by what I like to call the "medical establishment". There are folks here who have turned to veterinary medicines in order to self-treat because there simply aren't enough doctors who are knowledgeable about Lyme and the ones that are don't take insurance. Lots of folks falling through the cracks. Gotta be in charge of your own health. I went to 3 different ERs and saw my "primary physician" a handful of times before I finally managed to get effective treatment and I still have no diagnosis.
It's a long road, but we are here to help you!
Posts: 156 | From Virginia | Registered: May 2011
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