Post subject: Fibro, CFS, MS, etc., could it be Lyme disease?
Posted: Mon Feb 18, 2008 2:38 pm
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Joined: Sun Feb 17, 2008 9:42 pm Posts: 2800 Location: USA
Fibro, CFS, MS, etc., could it be Lyme disease? (Many links below)
Yes, is the answer....and/or active viruses could also be to blame and many times both. If you have any corticosteroids, (cortisone shots, pills etc. these can "re-activate" dormant viruses found in all of us) this is like a bomb and can re-activate viruses and disseminate lyme and co-infections rapidly and deeply.
MS is often diagnosed by brain lesions, many w/LD have brain lesions. If you are diagnosed with any of the following I cannot impress upon you enough how important it is to see a Lyme literate Md (go to ILADS.org and use the "contact" link to call or email for a Lyme Md referral) and get tested for Lyme and ALL co-infections before embarking on any treatments, especially those that involve immunosuppresents. DO NOT BE SWAYED BY MAINSTREAM MD'S - they will tell you it is "impossible" because they have NO knowledge of Lyme, trust me, you want to treat the right disease! Follow up at a lyme forum, talk to patients and see an LLMD.
Since Lyme and other bacteiral co-infections and even viral co-infections go together in many cases, all need treatment. Co-infections cannot be overlooked, as Lyme will not resolve without all bacteria's being treated. (See our Lyme and co-infections symptoms article here by clicking above "Everything you need to know about Tick Borne Diseases")
(This post is regarding the possibility of Lyme and these conditions includes many links to back these theories below. Viruses, can also be a part of Lyme Diseases called viral co-infections. Please see more about viruses here: viewtopic.php?f=6&t=55 ).
When you finish reading this, at the bottom are many links of interest.
My sister and I both have Lyme we both believed for years we had Fibro, until I had an explosive body-wide event that sent me on a tiresome, expensive search for answers to my excruciating pain, numbness, tingling and widespread neuro sympotms. (See my story at the main site under Author's Bio). But keep in mind Lyme can start with something as minor as insommnia or something as horrible as excruciating pain, there are endless mixtures of symptoms and rarely if ever 2 people can be found with identical symptoms.
What you must first understand FOUR things, most don't remember a tick bite, some are the size of the period at the end of this sentence. The classic "bulls eye rash" rarely appears after being bitten and if you have tested negative already for Lyme - it means nothing! Lumbar punctures are even less reliable in diagnosing Lyme! You MUST be tested through a tick borne specialty lab, Igenex. Labs across the U.S. are unreliable by the addmission of the CDC (Center for Disease Control) who devised the test. Your primary Md is illiterate to Lyme, don't believe a word he/she says..they are not trained in recognizing Lyme Disease and will misdiagnose Lyme 99.9999% of the time. You need to see a Lyme literate Md. (Click on "Board Index" in upper left corner to see more subjects and how to find an LLMD) Read both pages re:LD and testing: http://www.ilads.org/basic.html
So, know that -it is now even more possible you have been misdiagnosed. The links at the bottom of this post are imperative to study so YOU can make an informed decision about your body and your life.
We must agree there is a reason for your symptoms. How can someone test normal on every blood test and nothing can "prove" the cause of these debilitating conditions? If you have been through every test possible and don't have a definitive diagnosis or maybe you have been diagnosed, it is still important to rule out tick borne disease with a blood test that is reliable.
Whether the diagnosis be Fibro, CFS, MS, ALS and any other multi symptom/system disorder - Get tested for Lyme disease and the co-infections through Igenex promptly. But most importantly don't let any Md talk you out of it, it can be the difference between suffering a lifetime or getting well! 99.9% of the time Md's won't even consider LD as a cause of your chronic condition. Even though Igenex is the most reliable lab for Tick Borne Disease testing, no test is 100% reliable, therefore Lyme and co-infections are a clinical diagnosis. That is why it is imperative to see a good Lyme literate Md.
A few years ago and Md told me that he attended a conference with many other Md's. A question was asked to the group of doctor's: "Do you believe Fibro is a REAL medical condition or is it a somatoform (IN YOUR HEAD) disorder? 99% of the Md's said symptoms are in the patients head! You know why? Because they can't see it in a test! Fibro is no more accepted today than 20 years ago, Md's now believe you are a hypochondriac! This angers me! Fibro symptoms and CFS symptoms are as real as the day is long and there is a reason!! Lyme disease, the fastest growing infectious disease in America. You would never know you were bitten and you most likely were bitten in your own back yard!
Unfortunately, Lyme Disease is not accepted as a multi-symptom chronic disease. When I went from a Fibro diagnosis to a Lyme Disease diagnosis, I was relieved, I knew the truth, there was hope of recovering and people surely had to know Lyme is disabling! No, it is worse than Fibro, no one knows how disabling Lyme is, except other Lyme patients. Lyme is the most misunderstood, misdiagnosed, political disease there is! I couldn't believe it. Just when Md's appeared to start understanding Fibro some, now I have a disease hardly anyone understands...amazing.
One website lists the following reasons for Fibro, most of which are symptoms, not causes: Overexertion Stress Lack of exercise Anxiety Depression Lack of sleep or sleep disturbances Trauma Extremes of temperature and/ or humidity Infectious illness
Interesting, infectious illness! Viral? Bacterial? Both? Yes infectious illness can cause many symptoms including fibrous tissue pain (fibromyalgia) and Chronic Fatigue. But again, fibrous tissue pain and chronic fatigue are only SYMPTOMS not a real diagnosis.
For years Md's have thought that Fibro, CFS and even MS, were all caused by a virus or a bacteria that eluded them all. It still does elude them, why I don't know, but look no further, YOU have found the answer here.
If you compare symptoms lists of these "diseases" with a Lyme Disease symptoms list, they are nearly identical. Click here for Lyme Disease and co-infections symptoms: viewtopic.php?f=6&t=218&p=971#p971
There was an unofficial study done of 50 Fibro patients, they tested through Igenex and all 50 tested positive for LD.
I was misdiagnosed for 10 years with Fibro, my sister also misdiagnosed with Fibro for years and I know countless others misdiagnosed, from everything from chronic sinus infections to MS and it was Lyme! (Lyme Disease also can show white matter brain lesions in MRI's, I have them!) The worst possible scenario is that someone is misdiagnosed and being treated with corticosteroids. These are immune system suppressants, that will only make LD much more complicated, much worse altogether and harder to overcome. Even if you have had cortisone and had no reaction, it makes no difference, not every one's trigger is cortisone, but is one of the most common. You may notice over time feeling worse with corticosteroid treatments. If so...get tested for Lyme Disease at Igenex only!
If you want to be sure you are treating the correct illness, take the time to have a Lyme/co-infections test run through tick borne specialty lab Igenex. ( http://www.igenex.com ) I wish someone had told me this 10 years ago, when my pain was manageable, before Lyme Disease absolutely disseminated like wildfire throughout my body after having cortisone shots.
Dr. Schaller put it best: In the last forty years have you been camping, in the woods, walked in parks, have a home near deer {forest, field, suburbs, ticks are everywhere} and brush, engaged in gardening or do you have seven of the symptoms listed on page 9-10 in this free article: Advanced Topics in Lyme Disease - http://www.ilads.org/lyme_disease/B_gui ... _17_08.pdf
If you answer "yes," perhaps you should get some testing done at IgeneX before you waste more time and money
He also has been quoted as saying that MS is untreated Lyme disease.
In the end seeing a Lyme literate Md first is most important, although Igenex is extremely reliable, there is no test 100% accurate and in the end, Lyme should always be a clinical diagnosis by an "expert" Lyme Md.
Just a note - if you have ever been on antibioitics and had a worsening of symptoms - this can be a sure sign of Lyme. If you have ever been on antibiotics and felt better, this too can be a sign of Lyme disease.
Truth About Lyme Disease Video: http://www.youtube.com/watch?v=ZGQINypsf7g ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Always check with your doctor regarding advice given by me or any member at this forum & any articles & info. at this site. Site disclaimer: viewtopic.php?f=6&t=16
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