Anyone here used HIV/AIDS treatment for CFS?

[frederic83]

This latent (dormant) virus can last for years and give neurological problems? Without being able to show on blood test?

I don't know if CMV is what is causing your neurological problem, but a dormant virus can be pathogenic, and not be in the blood.

 

[sorin]

I don't know if CMV is what is causing your neurological problem, but a dormant virus can be pathogenic, and not be in the blood.

Can you please give some examples of such dormant viruses, or cases mentioned in the literature? And there is the obvious question - how can be detected such a dormant virus?

 

[frederic83]

We have the enterovirus with Dr Chia findings, but you certainly know that.

EBV: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4308653/

and other virus via viral integration in the cell: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4919655/

 

[sorin]

We have the enterovirus with Dr Chia findings, but you certainly know that.

EBV: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4308653/

and other virus via viral integration in the cell: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4919655/

It is interesting that in both cases is about herpes viruses and cancers of the digestive tube. I have pain of the upper segment of the stomach that started about 3 years ago, is more a pain that is triggered mechanically (when I change the body position) than related to the presence or absence of digestion and food. The pain is localized on the left upper part of the body (stomach) just below the costal cartilage and the sternum. Below is the area where I have this mechanical pain started 3 years ago, I did not do digestive endoscopy because I do not tolerate this, and at the ultrasound test it was told to me that "nothing unusual is seen".

So I remained without diagnostic and with the daily pain...

 

[frederic83]

Maybe PB19 can also be latent and causes problem but I'm not sure.

I have this pain too in my stomach for more that 6 years, I did an endoscopy and they found a gastritis. I have to eat constantly so I feel better. I think in my case that it is a latent herpes virus that lies there, and that is causing a "mild" inflammation, although the consequences are huge. I did the test for enterovirus (coxsackie and echovirus with neutralization tests) that came back quite negative. I'm positive for EBV, possibly HHV7 too. PPI helps me but it is not a miracle. It is definitely worse if I don't take it.

 

[Biarritz13]

I have this pain too but according to a specialist it's due to Bartonella who likes to lodge in this place (for what it's worth). I had it checked by 4-5 doctors, including a DO and they said it wasn't an organ.

 

[frederic83]

I have this pain too but according to a specialist it's due to Bartonella who likes to lodge in this place (for what it's worth). I had it checked by 4-5 doctors, including a DO and they said it wasn't an organ.

Where do you have this pain, Theodore?

 

[Biarritz13]

At the same spot that Sorin showed

 

[sorin]

I have this pain too but according to a specialist it's due to Bartonella who likes to lodge in this place (for what it's worth). I had it checked by 4-5 doctors, including a DO and they said it wasn't an organ.

Costochondritis is something very close to what we probably have, and looks it is related to Fibromyalgia and infections in the ribs.

 

[Biarritz13]

I looked into that but my pain doesn't look like a pain of a heart attack at all.

 

[Daffodil]

Is true this theory in other infections? I mean very high IgG shows active infections in other cases, for example for CMV, regardless the fact that IgM is negative? I have got a huge value for IgG CMV (one at the maximum limit of the sensing of the device) but an IgM CMV that is negative and the conclusion of the doctors I have seen (other than KDM) was that I do not have current CMV. Also I have tested for CMV PCR and was undetectable. But Elispot for CMV showed huge value and probably this is why KDM prescribed antivirals for CMV.

And another thing is that, as a constant, I show huge outlier values for past IgG or controversial tests (such as Elispot) but normal values for current IgM or PCR tests, so, again, most of the doctors says "this is normal" !

wow. wow. wow. you have such high values. i would guess 100% positive these infections are active.

many CFS specialists have noticed that even just high IgG can mean active infection but regular doctors never agree with this. Montoya for example, will treat with antivirals in presence of high IgG

 

[Daffodil]

@sorin my PCR's have always always been negative for everything. because my brain is so severly affected, i assume the infections are living in my central nervous system/brain and maybe not in blood or very low levels in blood?

 

[Daffodil]

@IreneF Lipkin, who deals with unidentifiable infections all day, says there are tens of thousands of organisms we have not identified yet....maybe more..maybe a lot more!

just recently they found some kind of new organism in the throat of some people that they find affects IQ!

 

[sorin]

@sorin my PCR's have always always been negative for everything. because my brain is so severly affected, i assume the infections are living in my central nervous system/brain and maybe not in blood or very low levels in blood?

Right, this may be an explanation also for me and for my neurological problems. But how can we have the proof that the infection is living in the CNS? Without doing biopsy. Sometimes I was thinking that I may have also non-Hodgkin lymphoma that is very linked with infections of the CNS and with enlarged and painful lymphatic nodes on the neck, and with spleen damage - but I tried to avoid biopsy of lymphatic nodes and of bone marrow...

 

[sorin]

many CFS specialists have noticed that even just high IgG can mean active infection but regular doctors never agree with this. Montoya for example, will treat with antivirals in presence of high IgG

I should discuss with KDM this aspect, because he prescribed me just Valtrex and that is for EBV but not for CMV. On the other hand, how on the earth can be explained such huge CMV infection in the central nervous system? How did it get there? And how exactly can that be explained in the absence of HIV? All my blood HIV tests are negative. Could we just make an extrapolation and think that in my case is possible that HIV infection does not show in blood but could exist as well in the central nervous system or in lymphatic nodes? For example, I have read somewhere that in order to put a diagnosis of HIV infection some doctors remove the lymphatic node and do a biopsy of it looking for HIV directly in the lymphatic node. That is scary that I might have missed for more than 10 years a diagnostic of HIV.

 

[Helen]

But how can we have the proof that the infection is living in the CNS? Without doing biopsy.

A sample from a lumbar puncture may reveal an infection. I surely am infected with Borrelia bacterias and the CNS, and also the peripheral nerve systeme, is affected but the lumbar puncture didn´t show anything in my case. My doctor, KDM, told that my doctors here should know that you seldom see anything in spinal fluid in late stage Lyme. FWIW.

 

[sorin]

A sample from a lumbar puncture may reveal an infection. I surely am infected with Borrelia bacterias and the CNS, and also the peripheral nerve systeme, is affected but the lumbar puncture didn´t show anything in my case. My doctor, KDM, told that my doctors here should know that you seldom see anything in spinal fluid in late stage Lyme. FWIW.

This is a good point and it just makes stronger my opinion that, in Medicine, we were used to think and act in patterns/recipes, which are not enough general to cover all cases. For example we are used to do blood tests to search for certain infection while the infection lives for years undetectable in blood but developing in nerves, brain, lymphatic nodes, etc. So we just loose years and years looking in the wrong directions and missing the right treatments. We were told also to think that IgM shows current infections, and now, years after we were negative on IgM, we understand that current infections can happen as well with IgM negative! And so on, so forth...

 

[Daffodil]

I should discuss with KDM this aspect, because he prescribed me just Valtrex and that is for EBV but not for CMV. On the other hand, how on the earth can be explained such huge CMV infection in the central nervous system? How did it get there? And how exactly can that be explained in the absence of HIV? All my blood HIV tests are negative. Could we just make an extrapolation and think that in my case is possible that HIV infection does not show in blood but could exist as well in the central nervous system or in lymphatic nodes? For example, I have read somewhere that in order to put a diagnosis of HIV infection some doctors remove the lymphatic node and do a biopsy of it looking for HIV directly in the lymphatic node. That is scary that I might have missed for more than 10 years a diagnostic of HIV.

lol no no no you do not have HIV. so many CFS patients have active CMV ....that would be a lot of people with HIV who would have died by now!

CMV is another common herpes viral infection that most of the population carries

CMV will activate when your immune system is suppressed and our immune systems are suppressed but not because of HIV. the testing for HIV is very very sophisticated now

 

[Daffodil]

yes KDM doesnt prescribe Valcyte i dont think. he tends to stick with very safe medicines. from experience, i have learned that this is the better idea. i wonder what will happen to me later on with all of the dangerous medicines i have taken, sometimes even contiuing after the doctor told me to stop due to elevated enzymes etc...so desperate was i to stop the agony of this disease

 

[mrmichaelfreedmen]

I suppose that there are other doctors on this planet that have other opinions that Dr. Chia.

Lol so what are you saying? Dr Chia and his HIV patients are delusional?