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Anyone here used HIV/AIDS treatment for CFS?

Daffodil

Senior Member
Messages
5,875
In my case is the same. I have high CD8 (about 1000) which makes the ratio CD4/CD8=0.7 < 1 which is outside the normal range (>1). Also, the specialist says I have high activity against of a virus (unknown actually). Then, all the docs I found on the net about high CD8 and inversed ratio of CD4/CD8 were related to HIV. Also I have very very high sCD14 values, and all references I have found about such high values were linked to HIV infection. I did in the last 6 years about 6 or 7 HIV tests at various labs, all indicating negative, but what is absolutely perplexing is that other indicators (such as CD8, CD4/CD8<1, high sCD14, etc) are common with HIV. This is something that is hard to explain...But medicine is not Mathematics, is not even Science, so I am afraid that everything illogical is possible here... Just because they lack scientific rigor of Mathematics. Definitely won't hurt if more mathematicians would be involved in Medicine, that would be a big plus and a big gain for this empirical field of Medicine.
hi sorin. the only reason all you can find online about high CD8 and high sCD14 is related to HIV, is because they have not looked into these values in other diseases much. they know sCD14 is increased in MS too and one researcher told me CFS is sort of like an atypical MS in terms of inflammatory profile and maybe other things.

its interesting that my CD4, which was once almost at AIDS levels, is now very good from antibiotic treatment
 

Daffodil

Senior Member
Messages
5,875
I've had high CD8 and I have a persistent enterovirus infection. Have you been tested properly for these viruses?
well, i have had some antibody testing years ago but i have no idea how reliable that is. it was always negative.....for coxackie and such. i cannot remember much more about that. i would like to ask my doc tomorrow about this....i will see if i can squeeze it in....i have a feeling there wont be much time to ask all i want. thanks for the suggestion!
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
i always have had high CD8. my specialist says that means virus. i am better thanks to years of antibiotics but why is my CD8 still always high?

too many things here not making sense.....pointing to virus. always pointing to virus. maybe i am treating the downstream effects of active borrelia or leaky gut or whatever....but i got this immediately after i contracted an acute flu-like illness. the exact same type of illness retroviruses cause.

i have pushed it to the back of my mind now, but if i stop to put the pieces together, everything screams virus.

i pray i am wrong
Antibiotics have no effect on viruses, so I wonder why you were taking them, esp. for years.

Acute flu-like illnesses have many causes:
https://en.m.wikipedia.org/wiki/Influenza-like_illness

AFAIK there are only three retroviruses that affect humans: HIV and the two HTLVs.
 

natasa778

Senior Member
Messages
1,774
Actually, if we go by simplicity, the simpler theory is that of no retrovirus involved; that is, it would mostly be a matter of genetics who gets ME following infection with one of these common viruses. We already know that other neuroimmune diseases like MS have genetic and ethnic risk factors, which significantly increases the likelihood of getting the disease, and there is also evidence that EBV infection is required to get MS (link). In this theory there is no necessary requirement for an underlying retrovirus infection. To get sick would just require the trigger infection and the genetic susceptibility, both of which we already know are proven disease factors.


Well, now that you say that, there are strong indications that the coinfection of EBV plus (H)ERV triggers MS. So yes, it is quite possible that in at least some cases a retroviral infection or reactivation will be a requirement.

Talking about genetic susceptibility, don't forget that polymorphisms in HERV genes are suspected to be predisposing factors in (autoimmune) diseases. When we talk about genetics we need to remember it is not only our human genes that count, but whatever else happens to be making home in us.
 

natasa778

Senior Member
Messages
1,774
Perhaps this was not clear, but the hypothesis isn't claiming that outbreaks tend to happen at the point of vaccination. Contaminated vaccine lots would introduce smoldering, subclinical retroviral infections into the population. As shown by HIV and HTLV, most people don't show acute symptoms upon initial infection, and when they do the symptoms are rather general (fever, etc).

So no, I wouldn't expect many patients to descend into ME/CFS soon after vaccination (though that's not to say some don't, in particular as is reported with Hep B vaccine, since it can trigger acute immune activation).

However, once a retroviral contaminant (that resides in immune cells and proliferates via clonal expansion) had been introduced into the population, an "outbreak" of ME/CFS could emerge from an outbreak of any acute infection that triggers retroviral proliferation through immune activation (e.g. enterovirus, EBV, CMV, etc). Hence, while most of the population recovers from said acute infection, those with a smoldering retroviral infection have their immune systems sent into tailspin.

The ordering of events is important as well. Having an existing "co-infection" at the point of vaccine contamination wouldn't necessarily be problematic. Having latent retroviral infection at the point of acute immune activation via co-infection would.

The problem with looking primarily at enteroviruses/EBV/etc is that there is a gaping hole these hypotheses: why do the vast majority of people recover yet a small percentage descend into ME/CFS? At best, enteroviruses/EBV/etc are necessary but not sufficient. And they don't even appear to be necessary, given gradual onset cases and apparent variability in type of triggering infection. This hypothesis would fill that hole.

Absolutely.

Few things to add, in case not familiar:

There was a leaked memo floating around a few years ago (I didn't save it but should be possible to google) from within a major pharma company, where directions were being give to colleagues in production saying that single batches of vaccines should be spread widely, ie never distributed in one location, to eliminated local outbreaks/visible consequences of possible 'bad batches'.

Retroviral contamination of vaccines is not a conspiracy theory but a well known fact, something that all major agencies including WHO and CDC have been Very familiar with for many decades. They never denied that fact, but have instead for some reason insisted that these contaminants are 'most likely' not a threat to human health. Their exact reasoning is still a mystery, but roughly spins around the ancient belief that benefits of vaccines (in monetary terms these amount to over $50 billion a year and expected to rise close to $200 billion in the next decade) outweigh the risk (worrying about long term consequences is never good for one's career).

Having been faced with the extent of retro/viral contamination of vaccines these agencies then advised vaccine manufacturers to take greater care in their manufacturing process. This wasn't an order, but rather a polite request. Timewise, we are talking 1990s...

When it comes to quality of vaccine manufacturing today and precautions taken against contamination one need look no further than this discussion board by Merck sales representatives
 

sorin

Senior Member
Messages
345
I've had high CD8 and I have a persistent enterovirus infection. Have you been tested properly for these viruses?
I tested 8 months ago for coxsackie and below is a snapshot from the report obtained from Armin Labs:
coxsackie.jpg

As can be seen here it looks like this is current infection? The report does not say which specific one I have (what group). And if it would say, is there any treatment that can be taken for this? Is KDM giving specific treatment for coxsackie infection?
 

JES

Senior Member
Messages
1,320
its interesting that my CD4, which was once almost at AIDS levels, is now very good from antibiotic treatment

May I ask which antibiotic? Antibiotics may affect the immune system positively, assuming that you have an underlying bacterial infection that is suppressing the immune system and preventing it from dealing with viruses.
I tested 8 months ago for coxsackie and below is a snapshot from the report obtained from Armin Labs:
coxsackie.jpg

As can be seen here it looks like this is current infection? The report does not say which specific one I have (what group). And if it would say, is there any treatment that can be taken for this? Is KDM giving specific treatment for coxsackie infection?

IgG titer looks quite high, which could indicate active infection. The ArminLabs doctor who the Swedish patients visited recommended the following to treat coxsackievirus (quoted from Swedish blog):

Multimessenger from Nutrined
OR
Takuna combined with Houttuynia from Nutramedix

KDM mainly treats with antibiotics from my understanding.
 

Daffodil

Senior Member
Messages
5,875
@sorin wow yes that shows active enterovirus. that might explain your high CD8!

@JES i took different ones....tetracyclines and ones that end in = mycin. i will also be taking rifaximin at some point.

my doc says CFS is caused by "intracellular bacteria". i do believe it but as usual, the viral theory keeps intruding into my thinking because of certain, unavoidable facts.

why is it that some familes have every member who is sick with this disease?? if everyone gets EBV or some ubiquitous virus at the same time, certainly everyones genetics cannot be the same.

nothing makes sense.

i guess many people have this same feeling cuz everytime i post something new on this old thread, the thread becomes very active again:)
 

sorin

Senior Member
Messages
345
IgG titer looks quite high, which could indicate active infection.
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.
cmv.jpg

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" !
 
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Hip

Senior Member
Messages
17,824
? 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.

According to Dr A Martin Lerner, a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer (Lerner says the IgM titer for CMV is inaccurate and insensitive).

The higher the CMV IgG titer, the greater the cytomegalovirus viral load. Ref: 1


You may also want to read Dr Lerner's study on 142 ME/CFS patients with herpes virus infections: 75% of these patients responded to the appropriate antiviral treatment (Valtrex for EBV, and/or Valcyte for HHV-6 and cytomegalovirus); the average improvement in ME/CFS symptoms was a 2-point increase on the Energy Index Point Score scale (for example, as a result of antiviral treatment, an average patient may go from from level 4 to level 6 on this scale).
 

sorin

Senior Member
Messages
345
According to Dr A Martin Lerner, a diagnosis of cytomegalovirus infection is made by examining the CMV IgG antibody titer (Lerner says the IgM titer for CMV is inaccurate and insensitive).
I have read in the past too about the Dr Lerner opinion. However, I am wondering if only him had this opinion or other authority doctors agreed with him.
The higher the CMV IgG titer, the greater the cytomegalovirus viral load. Ref: 1
On the other hand, if IgG high means CMV high viral load, why then the CMV PCR shows in my case "undetectable"? I thought that PCR tests give the viral loads.
You may also want to read Dr Lerner's study on 142 ME/CFS patients with herpes virus infections: 75% of these patients responded to the appropriate antiviral treatment (Valtrex for EBV, and/or Valcyte for HHV-6 and cytomegalovirus); the average improvement in ME/CFS symptoms was a 2-point increase on the Energy Index Point Score scale (for example, as a result of antiviral treatment, an average patient may go from from level 4 to level 6 on this scale).
As written in the Guide for practitioners, dr Lerner says that for CMV one should take Valcyte and that for EBV one person of 70 kg should take 4g Valtrex/day. In my case I tested also for EBV Elispot positive. KDM prescribed me Valtrex but only 1.5g/day and there are 3 months since I started this treatment. But KDM did not prescribe to me Valcyte, maybe because is toxic for the liver (as dr. Lerner also said). So according to dr. Lerner at the moment looks like I am treating only EBV but at less than 50% from dr Lerner recommended dosage and treating no CMV.... ?!?
 
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Hip

Senior Member
Messages
17,824
I have read in the past too about the Dr Lerner opinion. However, I am wondering if only him had this opinion or other authority doctors agreed with him.

I am not sure. I am always looking for this sort of information, in order to put the info in my roadmap of chronic fatigue syndrome treatment (drugs ans supplements). However, although there are around 30 internationally-known ME/CFS doctors, not all of them publish their results and methods, so it is hard to find the information.



On the other hand, if IgG high means CMV high viral load, why then the CMV PCR shows in my case "undetectable"? I thought that PCR tests give the viral loads.

I am guessing it is possible you might have a cerebrospinal fluid (CSF) infection of cytomegalovirus, but no infection in the blood; maybe that could explain why PCR is negative, but antibodies are positive. However, I don't know enough about this subject, so this is just a guess; you would need to get some expert advice on this.

Dr Peterson says 16% of ME/CFS patients have a herpes family virus CSF infection, most with HHV-6A. Ref: 1 HHV-6A is nastier than the more common HHV-6B.


In my case I tested also for EBV Elispot positive. KDM prescribed me Valtrex but only 1.5g/day and there are 3 months since I started this treatment. But KDM did not prescribe to me Valcyte, maybe because is toxic for the liver (as dr. Lerner also said).

If you look at Lerner's study, patients with active EBV who benefited from Valtrex had to take the drug for over 2 years in order to see results. So taking Valtrex for EBV is a long-term commitment, it seems. I believe Valcyte acts faster, around 6 months to see results.
 
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frederic83

Senior Member
Messages
296
Location
France
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" !

It could be a strong immunity against CMV, or a latent, but real infection, so that is why it is not in your blood.
 

sorin

Senior Member
Messages
345
It could be a strong immunity against CMV, or a latent, but real infection, so that is why it is not in your blood.
This latent (dormant) virus can last for years and give neurological problems? Without being able to show on blood test?