posted
I've noticed numerous post indicating a diagonsis of CFS/Fibro. prior to finding Lyme. After treatment of Lyme did anyone find all symptons of previous diagonsis of CFS/Fibro. were gone as well. If so, this would mean an incorrect diagnosis.
I was diagnosed with CFS/Fibro 14+ years ago, but just recently find I have Lyme Disease. Currently being treated for Lyme and 4 coinfections and anxious to see if all previous symptons of the CFS/Fibo. disapear!!!!!!!!!!!
Any comments or experiences will be appreciated.
Posts: 97 | From Tennessee | Registered: Nov 2005
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WildCondor
Unregistered
posted
YES! After being sick and diagnosed with CFS/Fibro/MS, you name it for 10 years, I finally got a Lyme and co-infection diagnosis. After a year of treatment for the tick borne diseases I was so much better and now 5 years later, the CFS & Fibro are gone! Its all Lyme, CFS is just a made up term for Lyme exhaustion. You will see how much better you feel in time too.
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posted
WildConder, thanks for your reply. That is exactly what I've been thinking all along. I'm looking forward to the day this Lyme is under control and there are no more symptons like the last 14 years of only living like 1/4 of a person. Actually, struggling to get from day to day in a fast paced world we live in.
So, how are you doing with the disease, hope it is in total remission with no side effects.
Posts: 97 | From Tennessee | Registered: Nov 2005
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Although I am not fully recovered, I was misdiagnosed with CFS/Fibro for 14+ years before it turned out it was Lyme all along.
I am improved after 19 months on antibiotics so far, but not there yet.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Dontlikeliver, Thanks for responding to my post request. So you were misdiagonsed for 14 years, same as I. Can almost make me angry at the Rheumatologist who gave me this diagonses and said it wouldn't kill or cripple me, just go home and live with it.
I've researched for all these years but never had a clue about Lyme Disease. It is quite a disturbing disease to have to deal with but if there is a light at the end of this tunnel, I pray I'll get there...........it would be so nice to have energy again.
So you've been on antibodics for almost two years, did you do daily i.v.'s or oral daily.
I see so many post where the patinets are on I.V. antibodics and wonder what the difference is between I.V. antiobodics and another patient taking the oral meds. Guess the i.v.antibody proably works faster, huh
Take care and hope you will reply to this post.
Posts: 97 | From Tennessee | Registered: Nov 2005
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posted
Yes, I've had CFS for almost 12 years. Finding out I also have Lyme and co-infections didn't make a lot a difference for me, but a lot of people DO get better with abx treatment, so you should definitely stick with it.
I am currently looking into rife, HBOT and other alternatives. I know something will work.
If you have severe fatigue as a primary symptom, you should do a search on Dr. Paul Cheney, the big CFS doctor. He does a good job of explaining the fatigue of CFS at the cellular level, and how the term fatigue is really a misnomer; it is more of a full metabolic shut-down.
I personally believe the "Lyme or CFS" dichotomy is false; I believe you *can* have both Lyme and CFS, and while the Lyme may have set off or contributed to the metabolic problems of CFS, your CFS will not resolve until the metabolic problems are addressed.
There is growing evidence that people with CFS (who may or may not have Bb/tick-borne illness infection in addition) have genetic variations in the methylation/methionine cycle that make them prone to defects in the Krebs Cycle downstream. This means they can't produce enough ATP, the body's main energy source.
I think it is a shame that in order to be diagnosed with CFS by the CDC definition, Lyme has to be ruled out. I think this falsely implies that you can't have both Lyme and CFS, where CFS is defined as a problem of cellular metabolism.
Many people with Lyme/TBI experience fatigue, but it tends to differ in quality and degree from the fatigue of true CFS.
Until the CDC gets its act together on the case definitions, there will continue to be a divide between the LLMDs and the CFS doctors. I wish there were more communication between the two camps. Why isn't Dr. Cheney speaking at the ILADS conference? Why isn't Dr. B speaking at the AACFS conference?
Until that happens, the LLMDs will continue to think of Lyme/TBI as simple bacterial infections, and the CFS docs will continue to assume that if you have Lyme, you can't have CFS.
An excellent study would examine the overlap between CFS and Lyme. But it'll be hard for that to happen when last year the NIH awarded $6 million to CFS research vs. $99 million to MS, even though CFS has a higher incidence.
OK, that's the end of my rant.
Bec
Posts: 21 | From NY | Registered: Nov 2005
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posted
At one point, I was told I had Fibro. I then learned they tell you that because you have a group of symptoms. ie. certain points in your body hurt. In other words, it's a bucket to put those people in that they don't know what's wrong.
That particular pain was horrible. I'm not well yet, but the pain labeled as Fibro is gone.
Posts: 856 | From Texas | Registered: Jan 2005
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WildCondor
Unregistered
posted
Don't forget that all Rheumatoligists would lose their patients is they actually acknowledged Lyme disease. Who would they treat if there were no more Rheumatoid Arthritis or Fibromyalgia patients? Maybe if these patients opened up their eyes and sought out the cause, there would no longer be a need for the Rheumy's! Enlightening thought isn't it?
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