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 Post subject: Fibro, CFS, MS, etc., could it be Lyme disease?
PostPosted: Mon Feb 18, 2008 2:38 pm 
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Fibro, CFS, MS, etc., could it be Lyme disease? (Many links below)

(Scroll down for many links of interest on this subject)

Most know that with MS brain lesions are common, but did you know many w/LD have brain lesions? If you are diagnosed with any of the following (Fibromyalgia, Chronic Fatigue Syndrome, MS) 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 immunosuppresants. DO NOT BE SWAYED BY MAINSTREAM MD'S - they will tell you it is unlikely or not possible that is because they have little to NO knowledge of Lyme, trust me, you want to treat the right disease! MS immunosuppresant treatments can be very detrimental to Lyme Disease. After reading this and the "links of interest", make sure to follow up at a lyme disease forum, talk to patients. Many will tell you they were misdiagnosed (some for years) before finding out they had Lyme Disease the whole time. Most importantly see an LLMd (Lyme Literate Md) for a consultation and testing through a tick borne specialty lab such as Igenex. Remember, ultimately lyme disease is a clinical diagnosis, even if tests are negative.

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").

My sister and I both have been diagnosed with 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. My brother in law went on a 20 year search for an answer to his chronic illness that was misdiagnosed as Chronic Fatigue Syndrome. He eventually found out it was Lyme Disease. (For my story, go to the main site under Author's Bio). I have several friends with Lyme Disease that were misdiagnosed for years with MS. How can this be? People often do not look for the cause of a disease. Lyme is the cause of many multi-symptom disorders.

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. I now have very "MS-like" symptoms, but it is Lyme.

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. 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.

See lyme disease symptoms lists:
viewtopic.php?f=6&t=218&p=971#p971

Fibro & CFS/more Links of interest (scroll down for MS links):

98% of patients with CFS found to have Lyme Disease: http://vesta.cumc.columbia.edu/lymedise ... l=newsFeat

Fibro/lyme patient story: http://www.canlyme.com/danette.html

The CFS/Fibro Lie: http://lymedisease.bravepages.com/

http://www.chisuk.org.uk/articles/result.php?key=102

http://www.canlyme.com/fibrocfslyme.html

http://www.healthboards.com/boards/arch ... 28593.html (read entire page)

http://www.immed.org/illness/fatigue_il ... earch.html

http://www.fibroandfatigue.com/lymedisease.php?

utm_source=adwords&utm_medium=ppc&utm_sponsored=lyme_disease&utm_campaign=lyme

http://www.fibromyalgiahope.com/Fibro_H ... ger24.html

http://www.immunesupport.com/library/sh ... fm/ID/8398

http://www.personalconsult.com/pubindex ... bromyalgia

MS links of interest:

Mayo Clinic study on MS supports Chronic Lyme: http://newsblog.mayoclinic.org/2011/12/05/ms-study/

Multiple sclerosis is Lyme disease: Anatomy of a cover-up: https://www.facebook.com/notes/mel-thor ... 4146468298

Brain lesions and Lyme: http://lookingatlyme.blogspot.com/2010/ ... l?spref=fb

Pubmed abstract - MS is Lyme: http://www.ncbi.nlm.nih.gov/sites/entre ... query_hl=8

Woman tells story of being misdiagnosed w/MS on youtube: Pt. 1 - http://www.michelleonlyme.org/index.html
and Pt. 2 - http://www.youtube.com/watch?v=BkBhPSMNPzE

Lyme Misdiagnosed as MS: http://www.lymeinfo.net/multiplesclerosis.html

Possible relationship of MS to EB virus: http://www.healthcanal.com/brain-nerves ... ntion.html

Misdiagnosed w/MS http://www.betterhealthguy.com/index.ph ... &Itemid=83

Woman diagnosed years w/MS: http://lymeresourcemedical.com/cases.php?case=8
And another
http://lymeresourcemedical.com/cases.php?case=12

MS patient treated w/LD IV antibiotic w/success:
http://www.direct-ms.org/pdf/CausalSpec ... isease.pdf

Lyme MD Blog re: MS vs Lyme: http://lymemd.blogspot.com/search?q=multiple+sclerosis

http://www.publichealthalert.org/Articl ... ician.html

http://www.geocities.com/HotSprings/Ret ... tients.txt

http://www.canlyme.com/megan_geostatist ... ysis2.html

http://www.betterhealthguy.com/index.ph ... &Itemid=83

http://www.ncbi.nlm.nih.gov/pubmed/1561 ... t=Abstract

http://www.personalconsult.com/articles/msorlyme.html (scroll down past intro)

http://www.lymeinfo.net/multiplesclerosis.html

A Geostatistical Analysis of Possible Spirochetal (Lyme Disease) Involvement in Multiple Sclerosis:
http://www.canlyme.com/megan_geostatist ... ysis2.html

http://www.personalconsult.com/articles ... ology.html (scroll down past intro)

Bb Ms Mino treatment: http://www.ncbi.nlm.nih.gov/pubmed/1561 ... d_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/1561 ... t=Abstract

The Differential Diagnosis of Multiple Sclerosis
http://www.neurology.wisc.edu/publicati ... euro_2.pdf

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