• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Can be CFS caused by a HIV-like infection?

Daffodil

Senior Member
Messages
5,875
@sorin ..this board is full of people who have mild AIDS-like symptoms - some have even gotten ill after sexual encounters - but they do not have HIV.

many of us became ill after exposure to someone's saliva. that almost never happens in HIV
 

CantThink

Senior Member
Messages
800
Location
England, UK
The point about lymph nodes - seeing as there are (many?) patients who develop M.E. after some form of mono/EBV infectio, it is perhaps unsurprising that lymph nodes being swollen and tender is an often present symptom.

Whether that symptom remains throughout the disease progression is another thing... In my case it did not remain or certainly not in its overt painful form. My issues tend towards autoimmune - after the disappearance of the lymph node issue (perhaps hmmm 7-10 years after onset), I developed 1 autoimmune disease, along with alopecia (autoimmune?), plus another disease that is thought may be autoimmune in origin. I also have developed, like many others on here, allergies and intolerances. Whatever is wrong with me, it wouldn't surprise me if it is autoimmune.

Regarding infection - as M.E. has been know to occur in outbreaks, how does one identify if that is not the case rather than gradual, individual passing on? I live in an area that has a high incidence of M.E. - There is no common theme for contact in order to pass it on via blood... Commononalities in my area: We all drink the same source of water, breathe the same air and potentially have all had various vaccinations.
 

Hip

Senior Member
Messages
17,874
Swollen lymph nodes can occur in autoimmune diseases like rheumatoid arthritis, lupus and Graves' disease. Thus the swollen lymph nodes often found in ME/CFS may be due to autoimmune processes.
 

Daffodil

Senior Member
Messages
5,875
@Hip ....but there are many doctors who believe what we call autoimmunity is actually undetected chronic infection/ some autoimmune disorders such as sarcoidosis, are known to remit with antibiotics....
 
Last edited:

Hip

Senior Member
Messages
17,874
@Hip ....but there are many doctors who believe what we call autoimmunity is actually undetected chronic infection/ some autoimmune disorders such as sarcoidosis, is known to remit with antibiotics....

I am not denying that a chronic infection might play some role in the triggering and/or maintenance of autoimmunity.

Though proving this is easier said than done. For example, in the case of the autoimmune attack on the insulin-producing beta cells that occurs in type 1 diabetes, researchers have being trying prove for ages that the coxsackievirus B infection found in those cells is the trigger of this autoimmunity; but so far definitive proof has not been obtained.
 

Jammy88

Senior Member
Messages
163
Location
Italy
What is your CD4 level?
Is a Doctor who prescribed you Valtrex or do you intend to take it on your own?

Hi @sorin , I don't know about my CD4 level. However, I started taking Valtrex today - it was my own initiative. Will let you guys know if I actually get any better.
 

sorin

Senior Member
Messages
345
@sorin ..this board is full of people who have mild AIDS-like symptoms - some have even gotten ill after sexual encounters - but they do not have HIV.

many of us became ill after exposure to someone's saliva. that almost never happens in HIV
@Daffodil This is a strong argument in favor of the idea that CFS is contagious. How do you know that you got ill after exposure to saliva and not in another way?
 

sorin

Senior Member
Messages
345
Regarding my abdominal pain, the doctors said it is in the muscle abdominal wall rather than internally in the stomach.
Looks like the pain is in the diaphragm muscle, but myself I am not sure if it is not a kind of ulcerous condition inside stomach.
I did several ultrasound tests which did not reveal anything apart of fat liver. What non-invasive tests can I do for this pain? I noticed that it was said earlier in this thread that Coxsackie B virus can trigger such symptoms. I will test for this, but apart of it, which other tests can I do? I do not want to do a gastro endoscopy but something non-invasive.
 

sorin

Senior Member
Messages
345
Sorry not up to reading the whole thread, I think it was Dr Tim Jackson, I'll try to check later on, who said in a radio interview that the old way of thinking with regards to IgG and IgM is wrong, if IgG is more than twice the normal range then this can indicate a current infection. The where and whys of it I can't explain. I think maybe the CMV should be re-visited. Also have you ever been tested for Lyme?


Hi all!

@Daffodil @maryb

About Lyme:
I was twice tested for Lyme (Borrelia burgdorferi IgG and IgM) and both were negative (for both IgG and IgM), but I did not test at the laboratory in Germany @Daffodil suggested (maybe I should do that for peace of mind). Form what I know this disease is caused by ticks which remains under skin. I mean should know if was bitten by a tick because the red spot is enough visible and even more the insect is inside your body. Is this correct? How was in your case @Daffodil ? The bites of the tick remained unobserved for years?

Regarding IgG levels: something very confusing for me happened these days. I tested for CMV (IgG, IgM and viral load through PCR) and the results were
IgG >500 where >1 means positive; actually I think the device could not measure the value, because it was too high for it to detect. Do not know even today if it was a device error or reality? Maybe I should repeat the test at the same lab.
IgM = 0.28 <1 - negative
CMV not detectable
So coming back to this post, "IgG is more than twice the normal range then this can indicate a current infection" - in my case seems to be 500 times bigger (!?!) so it should be current infection? But CMV PCR not detectable means there is no current viral load at the DNA level? I am very confused.
 
Last edited:

Jammy88

Senior Member
Messages
163
Location
Italy
Hi all!

@Daffodil @maryb

About Lyme:
I was twice tested for Lyme (Borrelia burgdorferi IgG and IgM) and both were negative (for both IgG and IgM), but I did not test at the laboratory in Germany @Daffodil suggested (maybe I should do that for peace of mind). Form what I know this disease is caused by ticks which remains under skin. I mean should know if was bitten by a tick because the red spot is enough visible and even more the insect is inside your body. Is this correct? How was in your case @Daffodil ? The bites of the tick remained unobserved for years?

Regarding IgG levels: something very confusing for me happened these days. I tested for CMV (IgG, IgM and viral load through PCR) and the results were
IgG >500 where >1 means positive; actually I think the device could not measure the value, because it was too high for it to detect. Do not know even today if it was a device error or reality? Maybe I should repeat the test at the same lab.
IgM = 0.28 <1 - negative
CMV not detectable
So coming back to this post, "IgG is more than twice the normal range then this can indicate a current infection" - in my case seems to be 500 times bigger (!?!) so it should be current infection? But CMV PCR not detectable means there is no current viral load at the DNA level? I am very confused.


Hi @sorin ,

Lyme can be transmitted sexually.
 

Daffodil

Senior Member
Messages
5,875
@Daffodil This is a strong argument in favor of the idea that CFS is contagious. How do you know that you got ill after exposure to saliva and not in another way?
well, i was totally fine until i kissed someone who was ill. have heard the same story many times from others. in some cases, entire families have CFS.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
This is where you really need someone who understands about infections...ie not me!!!
Okay my understanding - longstanding infections are not necessarily identified easily in blood tests, this goes for viruses and bacterial infections, I've had mega high IgM and IgG CMV/EBV results, but on doing PCR which was negative no treatment here, despite being really ill. This is where it gets complicated and physicians should treat on symptoms and patients presentation. sorry brain too bad to continue but hope you get the gist.
 
Messages
37
Location
Europe
Also, I recommend everyone (if not already watched) to watch this movie "House of numbers" which is free on YouTube. You will see how many lies were told to the public in the last 30 years about HIV and AIDS.

House of Numbers = BS

That documentary was created by Aids denialists and shouldn't be taking seriously. For the scientific evidence on HIV as the virus causing AIDS please refer to https://www.aidstruth.org/
 
Messages
37
Location
Europe
everyone following this topic:

there's a new test that dectets nearly any virus but unfortunately is not yet available to the public. however, I encourage everyone to contact the persons behind this research to see if there's any chance we can take this test

http://news.wustl.edu/news/Pages/28833.aspx

i already wrote a mail to one of the researches hoping for an answer. will update if I get it.
 
Last edited:

Hip

Senior Member
Messages
17,874
there's a new test that dectets nearly any virus but unfortunately is not yet available to the public. however, I encourage everyone to contact the persons behind this research to see if there's any chance we can take this test

I don't think this ViroCap test is anything particularly new, as far as I can see. Very similar methods already exist which test for the presence of all viruses in a patient (by looking at the viruses' genetic fingerprints), and are routinely used in research, and sometimes in clinical settings as well.

Existing methods which test for all viruses are:

High throughput sequencing — used by Dr Ian Lipkin in his study on ME/CFS patients (where he found retroviral infections in 85% of ME/CFS patients, incidentally).

DNA microarrays like the ViroChip and the GreeneChip

The above methods use genetic fingerprints to identify viruses.

It would be great though if we had an inexpensive, commercially available DNA microarray lab test that all doctors could use. At present DNA microarrays don't seem to have made it out of the research lab.



More info: Microarrays for Pathogen Detection and Analysis
 
Last edited:

Jammy88

Senior Member
Messages
163
Location
Italy
High throughput sequencing — used by Dr Ian Lipkin in his study on ME/CFS patients (where he found retroviral infections in 85% of ME/CFS patients, incidentally).

retroviral infections in 85% of patients, really? I didn't know that.. oh my God :(
 
Messages
37
Location
Europe
It would be great though if we had an inexpensive, commercially available DNA microarray lab test that all doctors could use. At present DNA microarrays don't seem to have made it out of the research

Hi, that's the idea with ViroCap: cheap and highly sensitive. Hope it will be approved but this will take years.

Thanks for sharing the links!
 
Messages
37
Location
Europe
Digging in the link shared by Hip I found this new technique which was just announced two months ago:

"VirCapSeq-VERT enables detection of viral sequences in complex sample backgrounds, including those found in clinical specimens, such as serum, blood, and tissue. The highly multiplexed nature of the system allows both the simultaneous identification and the comprehensive genetic characterization of all known vertebrate viruses, their genetic variants, and novel viruses"

Diagnostics Breakthrough Brings Viral Sequencing to Doctors’ Toolkit
https://www.mailman.columbia.edu/public-health-now/news/diagnostics-breakthrough-brings-viral-sequencing-doctors’-toolkit#sthash.nRjCDqdB.dpuf
 
Last edited:

maryb

iherb code TAK122
Messages
3,602
Location
UK
https://www.mailman.columbia.edu/public-health-now/news/diagnostics-breakthrough-brings-viral-sequencing-doctors’-toolkit#sthash.nRjCDqdB.dpuf

This looks brilliant but how long will it be, if ever before it makes its way into mainstream testing. I understand now why virus testing is so expensive, always wondered why they only did one at a time, this will save masses of money, but do the labs want us saving masses of money? :( Mind you I was thinking more private testing in the UK, in the US if the insurance companies get wind of it they'll push for it to be used won't they.