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non-viral CFS?

fibrodude84

Senior Member
Messages
191
I have one doctor who told me I have fibro and the other said CFS and possibly fibro too.

The rheumatologist argues that it's not CFS because my viral titers are only a tad elevated whereas CFS shows major elevation. Is this true? I have had viruses like shingles but I can't trace my CFS to a virus. Can CFS be unrelated to viruses?
 

Hip

Senior Member
Messages
17,820
Here is a list of known triggers of ME/CFS, and factors known to contribute to the development of ME/CFS (nearly all of which are backed up studies or doctors' observations):

Microbial Causes and Associations of Chronic Fatigue Syndrome

Enterovirus. Enterovirus infection (with coxsackievirus B or echovirus) is associated with chronic fatigue syndrome. 1 2 3 4 5

• Parvovirus B19. Parvovirus B19 infection is a known cause of chronic fatigue syndrome. 1 2 3
Chlamydia pneumoniae
. Chlamydia pneumoniae is a bacterium known to cause chronic fatigue syndrome.1
Coxiella burnetii. Coxiella burnetii is a rare bacterium that causes Q-fever, and has also been known to cause chronic fatigue syndrome. 1 2
Brucella
. Brucella is a bacterium known to cause chronic fatigue syndrome-like symptoms.
Giardia lamblia, a protozoan parasite that infects the small intestine causing giardiasis, has been shown to later lead to ME/CFS in a small percentage (around 5%) of individuals infected with it. 1 2 3
Human herpes six virus (HHV-6)
. Active infection with HHV-6 has been found in chronic fatigue syndrome, and this may be an exacerbating factor in CFS. 1 2
Epstein-Barr virus (EBV)
. EBV infection may cause ME/CFS-like symptoms for a short period of several months, and sometimes for longer periods. Active infection with EBV has also been found in chronic fatigue syndrome, 1 2 and this may be an exacerbating factor in ME/CFS.
Mycoplasma bacteria infection, from species such as Mycoplasma fermentans, Mycoplasma hominis and Mycoplasma penetrans, may cause or contribute to ME/CFS symptoms. 1 2
Other pathogenic microbes linked to ME/CFS include: Herpes simplex I and II, cytomegalovirus, HHV-7, varicella zoster virus, hepatitis C virus, HTLV I and II, neurovirulent influenza A, Ross River virus, SARS coronavirus, and Toxoplasma gondii.

Factors Linked to the Development of Chronic Fatigue Syndrome

Exposure to organophosphate pesticides has been implicated as a predisposing factor to ME/CFS. 1
Exposure to significant quantities of mold toxins (usually from water-damaged buildings) is a predisposing factor for precipitating ME/CFS (certain species of mold contain potent neurotoxins). 1 2
If corticosteroids (immunosuppressants) are given during the acute phase of a significant respiratory infection, this has been found to sometimes lead to ME/CFS. 1
Exposure to ciguatoxin can result in chronic fatigue syndrome. 1 2
Exposure to ionizing radiation is a cause of ME/CFS-like symptoms (post-radiation syndrome). 1
Cancer patients who undergo radiation therapy or chemotherapy quite often develop ME/CFS soon after. 1
Chronic fatigue syndrome can sometimes ensue after an episode of meningitis.1
Chronic fatigue syndrome can very occasionally appear after having major surgery.
Sometimes a major physical trauma — particularly a motor vehicle accident — can precipitate ME/CFS; trauma to the head has been shown to lead to fatigue. 1
Food poisoning very occasionally leads to ME/CFS.
Chronic fatigue syndrome has sometimes been precipitated by vaccination, 1 such as hepatitis B virus vaccination.1
Silicone used for breast and other implants, as well as silicone injections, can in rare cases cause an ME/CFS-like illness, as well as autoimmune conditions.
Exposure to tung oil has been proposed as a cause for ME/CFS. 1 2
• Jaw bone infections (osteomyelitis) may cause ME/CFS-like symptoms.

Already having the conditions of: irritable bowel syndrome, 1 2 3 interstitial cystitis, 1 2 chronic prostatitis 1 and/or endometriosis 1 may act as predisposing factors to acquiring ME/CFS, as these are all common comorbidities of ME/CFS, and such comorbidities are sometimes suspected of playing causal roles.
 
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Hip

Senior Member
Messages
17,820
@Hip

Do you have the citation so I can bookmark this?

I compiled the above list of ME/CFS causes and associations myself, over the years. This list is found on this page of my website.

The study or medical references for nearly all of these causes and associations are found in the above list itself (in the numbers 1, 2, 3, etc).
 

JAM

Jill
Messages
421
WOW!!! @Hip What a great reference list. Thank you for compiling it and making it available to the rest of us.
 

Hip

Senior Member
Messages
17,820
WOW!!! @Hip What a great reference list. Thank you for compiling it and making it available to the rest of us.

Yeah, I was hoping that compiling such a list of ME/CFS causes and associations would help throw light on the etiology of this disease.
 

JAM

Jill
Messages
421
Have you looked into Olive Leaf Extract as a treatment for HHV-6 and EBV? I'm having great success with it so far (only 5 months in).
 
Messages
9
If you don't have the viral onset CFS, you need to see a doctor with experience diagnosing mold illness. Few doctors know how to test for this. I suffered with CFS for 17+ years, saw top CFS doctors, including Cheney and Goldstein, and was finally found to be suffering from mold illness by Daniel Cagua-Koo, MD (Boston).

Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome
Joseph H. Brewer 1,* , Jack D. Thrasher 2 , David C. Straus 3 , Roberta A. Madison 4 and Dennis Hooper 5

Abstract: Over the past 20 years, exposure to mycotoxin producing mold has been recognized as a significant health risk. Scientific literature has demonstrated mycotoxins as possible causes of human disease in water-damaged buildings (WDB). This study was conducted to determine if selected mycotoxins could be identified in human urine from patients suffering from chronic fatigue syndrome (CFS).Patients (n = 112) with a prior diagnosis of CFS were evaluated for mold exposure and the presence of mycotoxins in their urine. Urine was tested for aflatoxins (AT), ochratoxin A (OTA) and macrocyclic trichothecenes (MT) using Enzyme Linked Immunosorbent Assays (ELISA). Urine specimens from 104 of 112 patients (93%) were positive for at least one mycotoxin (one in the equivocal range). Almost 30% of the cases had more than one mycotoxin present. OTA was the most prevalent mycotoxin detected (83%) with MT as the next most common (44%). Exposure histories indicated current and/or past exposure to WDB in over 90% of cases. Environmental testing was performed in the WDB from a subset of these patients. This testing revealed the presence of potentially mycotoxin producing mold species and mycotoxins in the environment of the WDB. Prior testing in a healthy control population with no history of exposure to a WDB or moldy environment (n = 55) by the same laboratory, utilizing the same methods, revealed no positive cases at the limits of detection.




Brewer JH, Thrasher JD, Straus DC, Madison RA, Hooper D. Detection of Mycotoxins in Patients with Chronic Fatigue Syndrome.Toxins. 2013; 5(4):605-617.
 

Hip

Senior Member
Messages
17,820
@steve b

One member of this forum, @doug, said he eventually completely cured himself of his mold-induced ME/CFS using supplements such as inosine, DMAE, and a few others (see his post here).



Have you seen Dr Brewer's more recent publication, by the way:

Chronic Illness Associated with Mold and Mycotoxins: Is Naso-Sinus Fungal Biofilm the Culprit?

Brewer thinks that the mold may form an infection within the body, and then continue to produce mycotoxins. If you think about it, this is the only interpretation of his first study that you quoted above that makes sense, as it would explain why ME/CFS patients who were exposed to mold some years ago still have mold toxins like ochratoxin A in their blood. Ochratoxin A (found in 83% of Brewer's ME/CFS patients) has a half life of 5 days, so it would have completely left the body after a few months, if it had come from an external mycotoxin exposure in the past.
 
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Hip

Senior Member
Messages
17,820
Hey @doug, nice to see you on this forum. Are you still in remission from ME/CFS, and still taking supplements?
 
Messages
9
My initial symptoms were muscle weakness, coordination problems, fatigue, IBS, and brain fog. I strongly suggest every CFSer take the visual contrast sensitivity (VCS) test at survivingmold dot com. The biggest problem, IMO, is that once ill from the mold sensitivity, you need to be in a very low mold environment for months before you can recover. Fewer than 1 in 4 buildings have a low enough mold level for me to experience a sustainable recovery. Even after getting out of a high mold building, if I'm in one of the 3 in 4 buildings with relatively low mold levels, the illness continues. For me, the low mold 1 in 4 building triggers some kind of detox process, inflammatory cytokines begin to decline, health slowly returns over a 9-10 month period.
 
Messages
24
Location
San Rafael, CA
Hey @doug, nice to see you on this forum. Are you still in remission from ME/CFS, and still taking supplements?
I'm doing great Hip. Still taking some supplements, mostly for joint damage, but also still taking some antioxidants. The mold article was interesting since I still have minor stuffiness in sinus and ear canals. I have a neti pot but need to use regularly. although mold started my illness, most of my later symptoms were from EBV and CPn. However, mold, virus and bacteria form biofilms together synergistically. I couldn't clear EBV until antivirals were incorporated with biofilm breakdown agents.