Hello; CFS questions for those who know

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astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 3704
   Posted 2/11/2017 4:32 PM (GMT -6)   
Q1)THE question- As of now, is there a concrete definition of CFS yet?

Q2)- a list of positive tests with certain symptoms? Instead if an array of things not commonly tying all these people together besides being tired all the time.

I ask this because as a reader, CFS and Fibro look similar with some overlapping symptoms common with Lyme and mold too. Plus all of these can also affect the thyroid. What few people I have met in person are unable to answer this question, as they, unfortunately dont take control of their health and simply believe what Drs say with minimal interest in understanding. Obviously many people on health forums as well as myself seek the real facts and dont rely on some Drs best "guesses" aimed to lable you and get out of the clinic.

I've been there, labeled just to get me to leave. Its BS.

I come here from the lyme forum and see a few others here too (more than a few, how ya doin? - I know your tired).

I had many symtoms of it and the bulls eye years ago, was treated, but still fatigued. I know enough about lyme to know I've done a lot for it- but the underlying issues are common with some folks here. Maybe the body damage it does is similar to what some people have going on here? No one knows yet. What is known, is long term "lymies" dont always get 100% better, that is also taboo to say that on some lyme forums (sometimes the truth sounds negative to some people), but I say it like it is. Someone has to.

So lyme aside, there are some tests and issues that all the illnesses above seem to have in common:
C4a, C3a, thyroid and adrenal issues, Human Trans Growth Beta-1, sometimes CD-57 which is known now NOT to only be a lyme thing..

Q3) is TGF-Beta1 the same as Human Trans Growth Beta-1 (which I'm elevated in)?

I'am tiring to expand my knowledge in all of this, lyme Drs have blinds on and CFS/Fibro Drs seem to be half nuts with their guessing games. Lyme is half guessing to, used to it, but it gets old fast.

Also is there a leading edge knowledge site on CFS and or Fibro with most modern info on it? I am trying to learn as much as possible with an open mind, on my own. Functional Drs as good as they are really dont know any more than patients who have been educating them selves on these matters- I have given up on Drs other than for certain marker tests I like to repeat.

thanks in advance to any CFS or Fibro "geeks" out there (from a true "lyme" geek LOL)!

Post Edited (astroman) : 2/11/2017 4:47:22 PM (GMT-7)


bcfromfl
Regular Member


Date Joined Nov 2011
Total Posts : 417
   Posted 2/11/2017 6:45 PM (GMT -6)   
Hi astroman --

You make some good points, and ask questions that would require far more than the space and time here to respond to.

There are those who claim that fibro is a completely separate condition, but most medical researchers agree that it falls under the umbrella of myalgic encephalomyelitis, encompassing the subcategories of fibro and CFIDS. Individual expression of the symptoms sway the direction to one side or the other. There is a movement to eliminate the nomenclature of the subcategories (primarily because the term "chronic fatigue" trivializes the condition) and move back to the broader ME.

Lyme is similar, but it is the result of infection. Since there is also conjecture that ME can be triggered by HPV infection and also some other viruses, such as West Nile, in addition to mold and (most importantly, in my opinion) formaldehyde, it becomes clear that the broader issue is an immune system overload. The similarity of symptoms is a result of the fatigue associated with immune breakdown, and, in the case of ME, autoimmunity.

There are some key tests to narrow down a diagnosis for ME, but it also requires the observational skills of an experienced doctor...as well as an informed patient. The doctor can only interpret what the patient realizes is important, and tells him. Some of the more important tests are CD4/CD8, ESR, and TH1/TH2, although the latter is performed in very few labs nationwide.

Further complicating a diagnosis of ME is the fact that there are different stages of expression. A mild form of CFIDS may only involve fatigue, while a full-blown example (like my own) involves food intolerance leading to GERD and IBS, arthritis, and acute headache -- with a host of annoying secondary symptoms.

There are websites out there discussing ME/CFIDS, but I really don't like any of them for various reasons. I have my own website (see www.healingwell.com/community/default.aspx?f=15&m=3786409 , with a focus upon identifying a key problem and managing the condition to live a full life. This is my main beef with researchers focusing all their efforts towards categorizing and diagnosing illness to the nth degree -- they miss the point of medicine, which is to treat illness.

I encourage others to become their own advocate (as you have done), but to also focus on the practical aspects of regaining one's health. Don't constantly label yourself as having a certain disease. Recognize that there is a health challenge, manage it, and move ahead with your life. We already have missed much of life either under the crushing symptoms, or enduring some of the medication prescribed to ease symptoms. Don't waste more time researching the condition beyond what is required to regain your life.

Key to all this is nurturing a sense of hope and joy, and refusing to let a diagnosis, or overwhelming symptoms, corrupt one's optimism. In my experience, labels and poor planning lead one down the wrong path. It is also impossible to regain health when a disease becomes a means to make one a martyr in front of family or friends. As Dr. Phil would say, "What's the payoff?"

I share your experiences with doctors just wanting to get you out the door with maybe a prescription, or an order for expensive tests. Part of becoming your own advocate means you already know ahead of time that the doctor is agreeable and experienced. Don't walk cold turkey into any doctor's office. That's an invitation for disaster, or at least disappointment!

Just my two cents...

Bruce
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