Anyone that has been diagnosed with fibromyalgia/CFS, MS, and many other diseases and conditions should be tested for Lyme disease, no mattter where you live in the country. There are tons of myths on this disease, first you don't have to have a bull's eye rash and second, the test your doctor will most likely give you is very unreliable. Please do some research on lyme disease and co-infections. youtube (under our skin) has some informative information as well as other sites. Please if you have one of these diseases or others, that in your research you will be made aware of, get tested for lyme disease. you may need to also do some research on proper testing. there are a few very reliable labs, however, a private one is igenix. lyme disease is a condition that can be treated and many completely recover. many doctors will not share this information with you. I have no affliliation with igenix or the documentary movie 'under our skin.' However they have helped me understand what has been ailing me over the past 5 years. Please, be well
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.
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.
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?
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.
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 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 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.
"My sed rate was high, my cholesterol was high, and my blood pressure is high"
What is your sed rate now ? The only reason why I ask is because a high sed rate is not too common in fibromyalgia patients. Do you have weakness ? If so, you might want to consider getting your cortisol level checked. Often we can have a low cortisol level and that can contribute to a higher sed rate (inflammation).
I'll just add my opinion and this is only my opinion...I can say I was diagnosed with Fibromyalgia, but at the same time I had symptoms of an on-going infection like sore throats, swollen glands, low-grade fevers, muscle/joint pain, nausea, etc This is what lead me to believe there has to be an infectious component to my Fibromyalgia. I don't believe everyone with Fibromyalgia has infections, but if they do, the infections need to be treated either naturally or with prescription treatment. If you don't have any obvious signs of an infection, you probably don't have Lyme, EBV, etc. but please tell me if I am wrong. I would have accepted a diagnosis of Fibromyalgia because I do think it is a very real illness within itself, but because I have been deathly ill and have even lost weight since my Fibro. diagnosis and have been in the hospital, I strongly believe I have an infection or infections which are weakening my body.
At this point because I am so ill, I feel I have to do the stronger treatments with antivrials and antibiotics because the benefits out weigh the risks of the meds. I think that with any treatment...the benefits have to outweigh the risks and I feel the risks of having untreated Lyme and/or reactivated EBV or another infection, in my opinion, are greater than the risk of the medications. These infections can destroy your body and open you up to even more infections. The Fibro Center does include an anti-yeast supplement, pro-biotics and immune boosting treatments when on antibiotic treatment. I am all for natural treatments, but unfortunately the natural treatments alone haven't helped in my case, but if your symptoms aren't as severe, then certainly all natural is the way to go or at least try first. Each situation is different just as each person with Fibromyalgia is different.
I respect everyone's opinions and my information is just based on my experience. I learn so much from reading everyone's posts and experiences. Thank you.
I am citing directly from a Fibromyalgia organization. If you would like the link for validation, i'll be happy to send it to you in PM. While you may not agree, their researchers are aware of potential effects from long-term antibiotics. So I am simply a messenger here...you'd have to take the situation up with those who did the research.
I know about herxing; I know about Fibromyalgia; I have already seen the movie; I know about Lymes. I am not here to argue with you about what you believe or what treatments did or did not work for you...I simply present information for others to consider when looking for any form of treatment for their illness. You have made your view known here and it's appreciated...I think everyone has contributed their thoughts and are concerned about 'feeling better' and taking the measures they deem necessary for their own health. I differ in my opinion in that I do not believe everyone with MS, EBV, Fibro, CFS and down the line...have Lymes. Is it a good idea to be tested for it? Yes.
I remember talking with you a while back. I am so glad to hear you are much better now. The members on the lyme board would probably love to hear your success story.
Often times lyme disease suppresses the immune system thereby causing dormant viruses like EBV to become active. I'm surprised an Igenex WB has not been ordered.
You made some good points on your most recent post. There is a med to treat FMS. It only treats symptoms though. It does not address the underlying cause which may be different for everyone.
Your story makes me very sad. I'm not a doctor but from what you have posted it sounds like possibly all your problems may be related to lyme disease. So without treatment I wonder what your chances are for recovery. I concur with you though that once it is deep in the central nervous system it may not be curable. This is the situation I am in myself. I will say though that with treatment I can function in life work etc....
Anyone who would like to talk more about lyme, we would love to see you in the lyme forum.
My doctor at the Fibro and Fatigue Center said although Igenex is the best test out there for Lyme now, it still can produce false negatives so he said he would just treat me for Lyme based on my clinical symptoms. I think he is trying to save me money, but tomorrow I am going to call the Center and ask to be tested by Igenex anyway for my own peace of mind. He was going to treat the EBV first, but if I have Lyme, I would much rather treat this first because like you said, Lyme lowers your immune system which could have caused the reactivation of EBV.
Just curious, what symptoms do you have with Lyme once it is deep in the central nervous system??
Thank you for the information!
My sed rate is normal as of my last blood workup. The wide spread pain and fatigue is still with me.....lovely...:( I've been with my internist for a good number of years and trust him totally. He is always researching and learning, and although he is an old school physician he believes in diseases such as Fibro cfs, etc, etc. He told me that he would test and retest me until he was satisfied that I had none of the co-existing infections. He also believes that long term antibiotic use is not good, and can cause a lot of problems.
My first symptoms were tingling and numbness in my leg. My leg would feel like it would go to sleep everyday, and would stay asleep for hours. Towards the end of the next month, the feeling came, and lasted for weeks. Now, it pretty much as affected almost every system in my body. For over a month now, I have barely been able to eat, without it causing severe pain. My doctor says that it is IBS. My blood pressure and pulse has also been very high, the last month and a half. Some days it reaches as high as high as 160/131 pulse 129. I just pretty much cope now, considering a trip to Emory Healthcare in the next few months. I should have gone when my PCP advised it last year. I have just started a new treatment that has shown great progress in controlling Fibromyalgia and Lyme Disease, along with many other conditions. It is called LDN or Low Dose Naltrexone. I have only been on it a little over a week now. It is hard to find, because it has to be compounded. If anyone is interested in this new drug, feel free to ask questions.
I totally agree with patsy's statement about meds only treating fibromyalgia symptoms. If you speak with an veterinarian, they will talk to you about treating parasite and lyme disease routinely in animals. Well guess what ? We have these problems and bacterial problems (guess why cows are now taking antibiotics)... and yet these underlying, VERY important issues are not being addressed in most fibromyalgia patients.
Good post, runner. I'm glad you are here. We need to stick together and realize that all of these illnesses (MS, lupus, fibro, lyme, CFS, etc) are all Th1 inflammatory diseases and all have so much in common. You can actually treat many of these successfully with antibiotic therapy.
Vbreeze: I've never stated that everyone that has MS, ALS, Fibro, and other conditions have lyme; I've said that if you've been diagnosed with these, then it may be beneficial to get tested for lyme and co infections. Tested with the most reliable test that they have available as of now; as the standard testing is often unreliable. I've read tons of information on Fibromyalgia, so I don't need that link.
Anyone who has concerns or wants information should refer to the lyme forum here, as they are very knowledgeable about lyme and will be able to direct you. Good luck and I hope that everyone will take a deeper look into this, as it may be beneficial.
"Anyone who has a dx of FMS should be tested to rule out Lyme or other possible illnesses/disorders that can cause like symptoms. "...as was stated in my second post here.
I agree with patsy10 as well, in that they are only masking the illness with the standard treatment, not addressing the real culprit. Hopefully, they are pulling it all together and will have more progress towards it in the near future.
I had way to many replies to some of these responses......I totally agree that one should be certain that they have FMS in the first place and not some other disease so push for the tests: Lyme, M.S. whatever is needed to fully determine that one has FMS.....I also believe that not every symptom that one has always has to do with having Fibro.........as you age you get Osteoarthritis, arthritis, etc......if you have an injury that does not return you to okay 100%....that pain that comes from that is not Fibro.....when I was first diagnosed I was ashamed to have Fibro....because everyone thought it was in my head....Doctors included............so I went into depression for eighteen years.......and now it seems everywhere you turn......every pain that any one person who has Fibro says it is because of the Fibro and it is not always the case..........I know the days when I have a flare......I am totally out of commission.......and in terrible pain. If I lie down too long, sit too long or stand up too long ....it really hurts everywhere....is it fibro, is the osteoarthritis, is it the sciatic nerve, is it my Crohn's or is it the Celiac Disease..or most likely it is a little bit of everything.........or maybe it is because I am lactose intolerant.....and yes there are forums for Lyme Disease, and forums for M.S.....but sometimes people need to come here and talk about Lyme Disease..and/or MS...so us fibro guys & gals can get some ammunition to go to our Med. Doctors.....to get the right tests.......needed....we are not all big researchers .......so thankyou runner473 for bringing this forum up.....it was much needed....I have had fibro diagnosed since the eighties and I have never ever taken any medications for it except an occasional pain pill....for me it has to be Demerol as I cannot take anything else......and believe you me I have gotten through plently of painful nights & days....but I believe more & more that the medications that you take....this med & that med does eventually have repercusions....on anyone's health...and the more antibiotics a person takes early in life....will definately have repercusions later in life when you JUST may really need them........
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