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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Do you take really big benefits from CFS/ME Bloodworks?

Do you take really benefits from CFS/ME Bloodworks?

  • Bloodwork helped me to get a 100% remedy

    Votes: 0 0.0%
  • Bloodwork helped me to fix many CFS/ME related symptoms, the ilness is better but still there

    Votes: 1 10.0%
  • Bloodwork helped me to fix only few CFS/ME related symptoms, the ilness didnt change significantly

    Votes: 2 20.0%
  • Bloodwork still cost me $$$, because the doctors have no clue and don't know what to do

    Votes: 5 50.0%
  • I don´t spend my money in any expensive CFS/ME bloodwork, because it is senseless.

    Votes: 2 20.0%

  • Total voters
    10

Hd-x

Senior Member
Messages
244
I am currently on the point where I need to consider about my situation.
I paid lot of $$$ for bloodworks, the guy claims to be a "FM/CFS Specialists", but the true is - he didnt even know about Bell scala or WPI Score.
Imo it is just this kind off doctor who still jumped on those FM/CFS-train to claim "it is real disease", just for making some money.

I now visited another doctor who first said he didnt believe illnesses like FM, CFS are real.
The doctor figured out in just 5minutes that I have a serious candida/soor problem and treats the fungi, but once I get off from anti-fungi therapy the problem comes back. He was bewildered about this, said such things still happen with HIV, but since I dont have HIV - it looks like the FM/CFS "sceptical" doctor is honestly interested to get such things fixed. He also prescribed MCAS medications covered by insurance. (the "FM/CFS-Specialists" still prescribed expensive MCAS stuff that I had to pay)


What was yours experience with CFS Specialists
- how much did any special bloodwork help you to get a working CFS/ME therapy?
 
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YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@Hd-x
"I don´t spend my money in any expensive CFS/ME bloodwork, because it is senseless."

I need to clarify that statement, and I checked it because it was the only ne that came close to my experience with Drs, specialists or otherwise, and the medico-pharma industry in general.

I believe that testing can offer up valuable information. The problem is finding a Dr who knows what tests to order, how to evaluate the results, and when those results require another, different set of testings.

I stick to very basic testing: CBC panel, Metabolic/Nutrition Panel, Full Thyroid Panel, occasionally a more specialized panel when I feel the need, and I adjust my self-treatment accordingly.

So far, so good.
 

Hd-x

Senior Member
Messages
244
@YippeeKi YOW !!
This is exactly how I feel, tests may obvisously offer some valuable information, but you dont find a Dr. who has the knowledge or time to evaluate the results. The most annoying part imo, if some Dr. promise recovery and cause the unsuspecting CFS sufferer to believe that the Dr has an idea + cure,
but at the end off the month if yours pocket is empty and you feel sick like always, you know it must be close to monkey bussiness.

@ all
the first choice in the poll should mean "cure/recovery"
(I guess "remedy" was the wrong word, sry for my english :love: )
 
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Markus83

Senior Member
Messages
277
Just for interest: How did the doctor diagnose the Candida and how was it treated? Normally, what the evidence based medicine teaches, one cannot have issues with Candida unless the immunsystem is severely depressed (HIV, chemotherapy, etc.).

You could test for MBL at IMD if you haven't done yet. According to a study from Charité university MBL deficiency is more often found in ME/CFS compared to healthy controls. MBL deficiency makes one more susceptible to some kind of infections, especially fungus/candida and some kinds of bacteria. However, there is no treatment for this condition. It just would give you some explanation. But I'm skeptical about the Candida diagnosis anyway...
 

Hd-x

Senior Member
Messages
244
@YippeeKi YOW !!
It seems it cant be edited once voted


@Markus83
Diagnosed simply by looking into stomach
- the diagnostic from the "specialist" was inadequate (no physical exam):

Sleep disturbance, Fibromyalgia?
" .... sleep problems are common there, no reason to worry"

Blood Pressure derailments/breathing problems?
"may be Amalgam related, we need bloodwork "

Stomach, Bladder + Prostata problems?
"we need more bloodwork."

Weight loss? The doctors office:
"may be malabsorbation, we need further bloodwork"

I feeled like beeing part off a bad movie that this dr never considered any other diagnostic tools and was quickly running back to school medicine, doing so turns out:
# Sleep disturbance = sleep apnoe
# BP derailments/breathing problems = allergic shock reaction to some foods
# Stomach + Nausea = Yeast/fungi, nausea MCAS or other reasons (will soon be answered)
# Prostata problems = Prostata cystis + stones found via TRUS
The "alternative" medicine has not seen it, who knows what else if undergoing CT, reflections and so on.

You could test for MBL at IMD
it may work with such tests to get things sorted out with a pretty good immunologists, but they are rare.
The University Hospital investigates my case now.
 
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