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Anyone here used HIV/AIDS treatment for CFS?

undiagnosed

Senior Member
Messages
246
Location
United States
I am curious if anyone tried to get diagnosed with the SCIO device http://www.quantumcentre.com/footer-pages.php?page_id=7 invented by Bill Nelson http://www.quantumcentre.com/footer-pages.php?page_id=37
and the device identified that they are HIV infected despite the fact that all blood tests says HIV negative! If you did not try the SCIO device, it worth to try...

I'm not sure where you saw that the device could detect HIV, but my first impression is that it sounds like bullshit. If you really want access to tests to look for divergent retroviruses, you could support a project I have been working on. I want to create a home test kit that can detect reverse transcriptase activity with high sensitivity. You would need a heat source such as a kitchen stove and a way to get a blood sample such as a lancet. The kit would include the reagents and tube to run the reaction which could then be read out visually. If this is something anyone in this thread is interested in, let me know. I could run a crowdfunding campaign or take donations to help with some of the development costs. You can see a thread here that describes some of my initial work.
 

sorin

Senior Member
Messages
345
I'm not sure where you saw that the device could detect HIV, but my first impression is that it sounds like bullshit. If you really want access to tests to look for divergent retroviruses, you could support a project I have been working on. I want to create a home test kit that can detect reverse transcriptase activity with high sensitivity. You would need a heat source such as a kitchen stove and a way to get a blood sample such as a lancet. The kit would include the reagents and tube to run the reaction which could then be read out visually. If this is something anyone in this thread is interested in, let me know. I could run a crowdfunding campaign or take donations to help with some of the development costs. You can see a thread here that describes some of my initial work.
Hi! I have looked at your device description, it seems it looks in the blood to detect HIV. In what respects is your device different from the ordinary lab tests that aims to detect HIV from blood? I mean is not the same thing?
The SCIO device sends an electric impulse in the body and then measures the electromagnetic reaction of the cells in the body. Based on the cellular response it says it can diagnose lots of diseases including infections with HIV, hepatitis, herpes, etc. But it DOES NOT need blood in order to do the test.
 

undiagnosed

Senior Member
Messages
246
Location
United States
Hi! I have looked at your device description, it seems it looks in the blood to detect HIV. In what respects is your device different from the ordinary lab tests that aims to detect HIV from blood? I mean is not the same thing?
The SCIO device sends an electric impulse in the body and then measures the electromagnetic reaction of the cells in the body. Based on the cellular response it says it can diagnose lots of diseases including infections with HIV, hepatitis, herpes, etc. But it DOES NOT need blood in order to do the test.

No, it wouldn't be the same as ordinary lab tests as those either look for antibodies, antigen, or specific RNA/DNA sequences. What I described would detect reverse transcriptase activity and would not be specific to HIV. If done properly, it would indicate whether a replicating exogenous retrovirus is present and further investigation would need to be done to further characterize it. It's a bit more difficult than just looking for sequences as DNA polymerases can have reverse transcriptase like activity. You would also want to rule out endogenous retroviruses. So there are some challenges to overcome false positives. Another possibility is to look for RNA/DNA sequences using degenerate primers for a target family of viruses. These would be less specific than the clinically available tests and would be able to detect divergent strains.
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
Hi @undiagnosed I'm curious about this technology. It sounds like it could be very useful.
Are there established parameters for normal reverse transcriptase activity in healthy individuals?
If we all carry some endogenous retroviruses, it is likely that some of them may be active in a harmless manner in healthy folk?
 

sorin

Senior Member
Messages
345
No, it wouldn't be the same as ordinary lab tests as those either look for antibodies, antigen, or specific RNA/DNA sequences. What I described would detect reverse transcriptase activity and would not be specific to HIV. If done properly, it would indicate whether a replicating exogenous retrovirus is present and further investigation would need to be done to further characterize it. It's a bit more difficult than just looking for sequences as DNA polymerases can have reverse transcriptase like activity. You would also want to rule out endogenous retroviruses. So there are some challenges to overcome false positives. Another possibility is to look for RNA/DNA sequences using degenerate primers for a target family of viruses. These would be less specific than the clinically available tests and would be able to detect divergent strains.
I do not have medicine/biology background (my studies are in Computer Science) so I do not understand all those biology details you are using. Can you explain please, in a language that anyone can understand, the essence of your device, the ultimate goal of your device? What are you hoping to detect with this device? What viruses? You said exogenous retroviruses. Which ones? Do you refer to those already named (like HIV1, HIV2, HTLV1, HTLV2, etc) OR you want to discover new retroviruses (which are not yet named and officially recognized)?
 

undiagnosed

Senior Member
Messages
246
Location
United States
Hi @undiagnosed I'm curious about this technology. It sounds like it could be very useful.
Are there established parameters for normal reverse transcriptase activity in healthy individuals?
If we all carry some endogenous retroviruses, it is likely that some of them may be active in a harmless manner in healthy folk?

Generally, the assay is designed to either suppress non-exogenous reverse transcriptase activity or account for other sources of activity and interpret appropriately. So in a highly sensitive assay there would likely be some degree of background activity in healthy individuals. One contract research lab that I've talked with offers a PERT assay for detecting reverse transcriptase activity. They generally provide services to pharmaceutical companies and others to look for reverse transcriptase activity in cell cultures used in things like vaccines. To suppress non-exogenous reverse treanscriptase activity they do ultracentrifugation to separate viral particles from other components. In the reaction they use activated calf thymus DNA to suppress DNA polymerases that can cause reverse transcriptase like activity. If steps like these are taken there shouldn't be any significant detectable activity unless a replicating exogenous retrovirus is present. You would need some controls to work out thresholds.
 

undiagnosed

Senior Member
Messages
246
Location
United States
I do not have medicine/biology background (my studies are in Computer Science) so I do not understand all those biology details you are using. Can you explain please, in a language that anyone can understand, the essence of your device, the ultimate goal of your device? What are you hoping to detect with this device? What viruses? You said exogenous retroviruses. Which ones? Do you refer to those already named (like HIV1, HIV2, HTLV1, HTLV2, etc) OR you want to discover new retroviruses (which are not yet named and officially recognized)?

The goal is to have a sensitive assay to detect reverse transcriptase activity that can be carried out with minimal equipment, basically a point of care reverse transcriptase activity test. It would detect any exogenous retrovirus with a sufficient replication rate. That would include all of the retroviruses you mentioned and others. It could be used for detecting evidence of existing and new retroviruses. These types of assays exist but they are only available in research lab settings and are basically impossible to access.
 

sorin

Senior Member
Messages
345
That would include all of the retroviruses you mentioned and others. It could be used for detecting evidence of existing and new retroviruses.
So if I understood correctly your device could be used to detect in the blood retroviruses that currently are not officially detected, named or recognized. So, assuming someone detects with your kit a new un-named retrovirus, what is the next step? What medicament should that person take? What diagnosis will he/she have? What doctor is going to treat that person?
 

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
@sorin If I understand what @undiagnosed said, then this will only detect that there has been unusual retrovirus activity, rather than the test can actually go as far as isolating a specific retrovirus. I imagine follow up tests might be needed for that.
 

undiagnosed

Senior Member
Messages
246
Location
United States
So if I understood correctly your device could be used to detect in the blood retroviruses that currently are not officially detected, named or recognized. So, assuming someone detects with your kit a new un-named retrovirus, what is the next step? What medicament should that person take? What diagnosis will he/she have? What doctor is going to treat that person?

The test would not be able to give you a diagnosis, but it would provide evidence that further investigation is warranted. A doctor most likely isn't going to do anything based on the result. You'd have to find a researcher or get access to research assays to look for a specific retrovirus. It would also be possible to create a kit that does this using nucleic acid amplification to look for RNA or DNA sequences for a particular retrovirus family such as lentiviruses. In this way you could gradually narrow in, but you start with the least specific detection methods first.
 

sorin

Senior Member
Messages
345
A doctor most likely isn't going to do anything based on the result. You'd have to find a researcher or get access to research assays to look for a specific retrovirus.
So this is intended for a small minority of people, the privileged ones who may obtain further help from a researcher...
But what about us, the 99.9999.... % percent of CFS patients, who do not have a friend researcher? And even so, what medicament would be given further? So finally, at the end of the day, what would be the gain of the patient? It sounds discouraging...
 

undiagnosed

Senior Member
Messages
246
Location
United States
So this is intended for a small minority of people, the privileged ones who may obtain further help from a researcher...
But what about us, the 99.9999.... % percent of CFS patients, who do not have a friend researcher? And even so, what medicament would be given further? So finally, at the end of the day, what would be the gain of the patient? It sounds discouraging...

No, the intention is to make kits and tools available for everyone so that you don't need to get access via a researcher which is nearly impossible for the average person to do. If you found evidence of a retrovirus and narrowed in on the type then it could be treated with the appropriate antiretrovirals.
 

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
@Knockknock
In Germany some (I don't know how many, because they hide) take HIV drugs with huge improvements.
Some are taking them about 2 years and are now able to leave the bed after 5 to 8 years, they can do talks, some walks, no problems with light and noise anymore!
http://meversuscfs.blogspot.de/2017/11/time-for-truth-zuruck-im-leben-dank-hiv.html
(scroll down for english translation!)

They say the more sick the people the better it helps.
And the more sick they are the normal are the blood values and doctors can't find any active infection or other things which state reasons for treatment.

And this makes it very difficult to get this or any other treatment.
 

Hip

Senior Member
Messages
17,857
In Germany some (I don't know how many, because they hide) take HIV drugs with huge improvements.

The main HIV drug that seems to help ME/CFS is tenofovir. Dr Chia has started using this. But don't assume its benefits for ME/CFS are necessarily due to its antiretroviral action: tenofovir is also a potent immunomodulator, and may fight the viral infections found in ME/CFS via this immunomodulatory action.
 
Last edited:

sorin

Senior Member
Messages
345
@xcell Very interesting your post! This is what I also supposed long time ago. The question is, what are the side effects of these HIV drugs? Are they dangerous for a CFS patient? And would it be suitable for mild CFS symptoms (I mean part time work, a few hours per day, a few days per week)? And what should be the treatment scheme?
 

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
@sorin
The author of the blog published her treatment scheme! Anyone can translate the text with deepl or other translators.

The author writes:
meversuscfs.blogspot.com said:
http://meversuscfs.blogspot.com/2018/06/arztanfragen-mein-therapieregime-fur.html
According to the current state of knowledge, it can be assumed that only patients who meet the international consensus criteria generally benefit from ART (Carruthers et al. 2011, here the criteria as a short version in German). These are patients whose main symptom is not fatigue or generalized exhaustion, but a pathological muscle exhaustibility with the consequence that a neuroimmunological deterioration (PENE) occurs after even slight exertion. (More about ME in my book)
Translated with www.DeepL.com/Translator

These are the real ME patients, and not the CFS patients.
 
Messages
95
Location
SoCal
The main HIV drug that seems to help ME/CFS is tenofovir. Dr Chia has started using this. But don't assume its benefits for ME/CFS are necessarily due to its antiretroviral action: tenofovir is also a potent immunomodulator, and may fight the viral infections found in ME/CFS via this immunomodulatory action.

Any link to tenofovir information regarding Dr. Chia? He has me on lamiduvine and if it doesn't work he wants to move me to Tenofovir.