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lyme disease mimics fibromyalgia and CFS, MS, and other diseases.
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
"My sed rate was high, my cholesterol was high, and my blood pressure is high"
Hey kiddthekatt,
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).
Hey kiddthekatt,
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 meant to say 4 times and not this "After being tested 3 times for co-infections and finding none"
Angel
Angel
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.
gentle hugs
Angel
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.
gentle hugs
Angel
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.
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.
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?
Ree4tu
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?
Ree4tu
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.
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