Yes, this has been mentioned many times in this forum. Thank you for your concern.
Dr. Lipschultz at the Fibromyalgia and Fatigue Center of Philadelphia reported to me that even igenix can produce false negavtive tests. He treats for Lyme based on symptoms and doesn't rely heavily on any Lyme tests because they are so unreliable.
You are exactly right, many patients are treated simply on a clinical diagnoses. Igenix is one of the most reliable test and can also show if the patient have co-infections, which also need treatment. There are also a number of medications that can cause false/neg results. Antibiotics before testing , prednisone, and a list of others. I'm not a specialist, I'm just trying to get everyone awareness up, so they don't have to lose their loved ones, when it could have been prevented with antibiotics.
I want to add something, that maybe I didn't make clear in my earlier comment.Many are being treated on a clinical diagnoses and that's fine. It's just a shame that the CDC doesn't provide a reliable test for the widespreading illness. There isn't a lyme test that is 100% reliable that I know of, their lab is the closest to detecting the lyme and the co-infections. Hats off to your doc., he is a pioneer, which many will be looking to in the future.
I was diagnosed with Fibromyalgia a little over a year and a half ago. In January of last year, my PCP also decided it was necessary to test me for Lyme Disease. After the test results came in, it was confirmed that I had Lymes Disease. They still believe though that I have Fibromyalgia, and that the Lyme Disease may have set off a chain reaction of diseases and conditions.
That's great that you PCP tested you for lyme disease. Sorry that you have it. It's also important to get tested for the co-infections. I hope you will be getting treatment for lyme and co-infections; if you have any. It's my opinion and many others that fibromyalgia is a stage or a symptom of lyme disease and co-infections. If you would like some sites where you can find more information about this, please let me know. Many have recovered completely from fibro symptoms, once the lyme disease issue is properly treated. Be well.
Cited: "It is thought that between 15% and 50% of those patients diagnosed with Lyme disease actually have fibromyalgia. It is important that you be tested for Lyme disease using a variety of different diagnostic tests, in order to rule out this disease. Long-term antibiotic treatment can result in serious side effects, and won't do anything for your fibromyalgia symptoms."
Should you have Lyme, it doesn't mean you will have FMS; should you have FMS, it doesn't mean you will have Lyme (just wanted to stress this so there isn't a misconception about the two illnesses).
Anyone who has a dx of FMS should be tested to rule out Lyme or other possible illnesses/disorders that can cause like symptoms.
I have never been tested for Lyme disease........and it is good to have somethings repeated for us newbies....so thank you for bringing up Lyme Disease.....
Sorry to hear you have Lyme, but glad you have a diagnosis so you can get the proper treatment. There are several different blood tests for Lyme. Could you tell us which test you had if you wouldn't mind sharing? Maybe it would help others.
I believe Lyme Disease can reactivate when your immune system is down, so maybe that's what they mean by the fibro triggering diseases, but usually a stressor such as a disease triggers the fibro. Time will tell-If you get better with the Lyme treatment and fibro symptoms disappear, then you probably have your answer.
Sorry I didn't read that right...you said you were told the Lyme triggered other diseases like fibro. My mistake!
I'm not sure when thester will return, but here is a link telling about the tests that they do for Lymes. Also, MedHelp has a Lyme forum where you might be able to obtain more answers and information.
Take care and have a great day.
I really appreciate the great info. about Lyme. The doctor at the Fibro and Fatigue Center seems to think I may have Lyme in addition to EBV, but my Lyme tests keep coming back negative. He did also test me for co-infections of Lyme. So he is going to treat the EBV first and see if I feel better. Anyway, I was on antibiotics and anti-bacterial drugs for a parasite about one month before my most recent test. How long do the antibiotics have to be out of your system before testing for Lyme?
You are quite welcome.
I'm sorry, I do not know the answer to your question about antibiotics. I'm sure if you were to ask in the Lyme forum, that they would be able to tell you. I haven't known anyone who has been treated for this disease, and I pray you do not have it.
P.S. I'm glad to hear your doctor is being so thorough with you. Best wishes.
Thank you so much...I will look at the website and Lyme Forum. I think I had every test for Lyme except for the Igenix, but want to be sure. My other concern is I was taking antibiotics on and off for a while and this could be interfering with the tests. I wasn't on antibiotics for the most recent test for about a month. Maybe I should post this question in the Lyme Forum?
I totally understand your concerns. Yes, here it the link to their forum. I know they can help you from their first-hand experience. Take care.
I myself had problems for years you can look at my past posts and was tested by igenex and was cdc positive and also had a coinfection after antibiotics for 3 months I can say my symtoms are 90% gone. So I would tell everyone too get tested if you can. It did wonders for me
Sorry all, I haven't had the strength or energy to log in to the site in the past few days. But here, I am. They say that the after antibiotic testing you should wait at least four months before retesting.
i have not retested myself but i feel so much better I am actually due to see the neur on the 26th and see what they wanna do
I am sorry, I am not really sure which testing my doctor administered, but I will look on my Insurance Companies website and let you know. I was told that at the onset of my symptoms I had had Lyme Disease for a while, considering the fact that my first few symptoms were Neurological. My doctors say that it caused a chain reaction, and believe that I too have an Autoimmune condition, just not sure which one. In articles I have read recently, it states that Fibromyalgia can be considered an autoimmune condition. Which in my case makes a whole lot of sense, my immune system after unsuccesfully fighting off the Lyme infection, started fighting itself. For the past few years, my immune system has been low, even before my current illness. Unfortunately to this day, not much is known about Lyme Disease. It is said, that once it gets to the point where Neurological problems are seen, there is not much that can be done. I was treated with Antibiotics for a month, and since no treatment has been administered. I have considered going to see a Lyme Literate Doctor out of Mobile Alabama. My doctor says that he is really good. The only downfall of making the trip, is that Insurance companies don't consider these doctors necessary, so in turn the refuse to pay. I know a person that saw him, and he said his first bill was over $400. If you would like this doctor's info, phone number and name, feel free to PM me. Sorry this message may not sound the best, my mind is so cloudy. I can't keep anything straight today.
I'm not doing so well right now. I'm going to get back on when I'm feeling better. Please just check out information about lyme disease and co-infections. there is info at many lymeblogs. I want to read through everything on this page, but I'm just not to it. I do want to add, there are a number of things that may interfere with getting a proper lyme test diagnoses, some are antibotic use, predisone and other things. I'll be more through when I'm feeling better. I'm not a doctor, I'm a well-educated patient, but I don't have all the answers. I'm sorry.
The Fibro and Fatigue Center I go to is going to treat me for Lyme after treating my EBV if I don't improve with the EBV treatment. All my Lyme tests are negative, but I didn't have the one from Igenix yet. The doctor seems to think that I have Lyme in addition to EBV. My symptoms started with neck pain which progressed to neck stiffness and then muscle twitches in my legs in July 07. Then since a bad virus in March 08, my symptoms grew and really got worse to the point where I can't get out of bed and had to quit working.
The Fibro and Fatigue Center treats Chronic Lyme for 3 months with 3 different antibiotics at the same time I believe. They also provide treatment to boost the immune system to fight off infection. With the boosting of the immune system, I am experiencing worse symptoms. My glands and throat are swollen, have low fevers, rash and nausea which feels like the flu. So I definitely have an infection, just not sure if it's Lyme in addition to EBV, but I don't think I would be as ill as I am with the EBV alone. Wish the Lyme tests were more reliable.
I hope you find someone who will provide adequate treatment. Thank you for answering my post. Just curious what your first symptoms were with Lyme?
First,Vabreeze: I'm curious where you are citing from. I don't agree with you about long-term antibiotic treatment being harmful, as long as you are putting good bacteria into your body (probiotics-such as acidophilus) However, I'm not a doctor, but a lyme literate doctor would be able to moniter the dosage and decide the best way to treat the individual.
When you speak of side-effects, what are you referring to? Many have a herxheimer reaction. Which is when the toxins are making their way out of the body. It's important that you have a knowledgeable (lyme literate doctor) treating you and not attempt to treat yourself. Fibromyalgia is a mystery illness, I've even heard it called a wastebasket illness; which means they really don't know what it is. There isn't a test for it, except for the pressure point test, and when you have Lyme disease, you are sore and tender in many areas of your body. I've known of people who were diagnosed with fibro, tested postive for lyme and after long-term antibiotic treatment were 100% better. It seems strange that they have at least one medication for fibro, yet, not a specific test. I think it would be well worth anyone's time who has a diagnoses of MS, Fibro, ALS, Parkinson's like symptoms, ADD, CFS, and even alzheimers to get tested for lyme disease and co-infections. Watch the movie 'under our skin,' go to a lymeblog and read more about lyme. It would be a shame for someone to go their entire life suffering and perhaps dying, when they could have been treated with anti-biotics. If you do the research, I think many will question their diagnoses. Lyme is treatable and the sooner you get tested and treated the better. This is my opinion on the research I've came across. Please just take it into consideration.
I've been lurking and reading this thread and decided to get involved. Before I was diagnosed with Fibro/CFS I was tested not once but 4 times for Lyme, Lupus, diabetes, MS, ALS etc. Everything came back negative each time. My sed rate was high, my cholesterol was high, and my blood pressure is high. My cholesterol is now in a safe range, but my blood pressure is still controlled with medication.
I was treated with antibiotics for 3 months before my internist sent me to the Rheumy. I had 3 major knee surgeries in 2007 and my internist spoke to my OS and decided to go with the antibiotic treatment just in case I might have infection in the knee. Mind you, there was no sign of infection, but they wanted to be sure before going to the next step.
It was almost 3 months before my internist sent me to the Rheumy. He did my blood work again and everything came back negative. By that time I was miserable!! I could barely get around, I hurt all over, and I was so tired of not knowing what the hell was wrong with me. I've also heard Fibromyalgia referred to as " The Waste Basket Disease" and it makes me angry that something that can cause so much devastation and takes away so much from those of us that have this disease, for it to be referred to as a "Waste Basket Disease."
After being tested 3 times for co-infections and finding none, the Rheumy diagnosed me with Fibro/CFS. There are several medications for Fibro and they do help a whole lot, if one can take them without suffering from side effects. With so many people being diagnosed with Fibro, it upsets me that research for this disease isn't more aggressive. But, until more physicians acknowledge that Fibro is real and can totally eat away at us, we will have to continue the way we are.