KDM Still worth going?

[Anetta]

Hi guys!
I know that KDM has been known as a top doctor for ME/CFS. Is it still the case? I am spending lots of time in Belgium and just had to wonder... Read lots of controversial reviews.
I don't think I have Lyme though... but I was not tested by ArminLabs.

 

[Anetta]

Just FYI: my illness started with mono IgM EBV, improved a little with Valtrex but then went downhill with POTS, sensory overload, constant burning feeling in the back of my head...

 

[ljimbo423]

I don't think I have Lyme though... but I was not tested by ArminLabs.

my illness started with mono IgM EBV, improved a little with Valtrex but then went downhill with POTS, sensory overload, constant burning feeling in the back of my head...

ME/CFS researcher Derya Unutmaz just published a study online a few days ago. In there he says this-

While the causes of ME/CFS are likely to be multifactorial, a common history of initial infectious agents, including viral (e.g. EBV) and bacterial (e.g. Lyme Disease) infections, have been associated with triggering the disease (Hickie et al., 2006;Katz et al., 2009).

Link

He says triggering the disease because they have not been found to be the cause, they trigger the actual cause. Ron Davis found more viral re-activations in healthy controls than in 10 severely ill ME/CFS patients.

Derya Unutmaz found this-

In addition, the proportion of CMV/EBV infection among healthy controls and ME/CFS patients was not significantly different in either age group (data not shown).

He does suggest, several times in his paper the gut dysbiosis could be causing the immune system dysfunctions he has found.

 

[overtheedge]

@ljimbo423
I'm confused as to the specifics of this

So I'm positive for a number of EBV antibodies, every time I've taken an EBV test it comes up with a pattern that says the EBV is chronic/reactivated, does the new testing Ron Davis and others ran show that to be irrelevant or did they find that, of the many pwme's they tested, the number who had EBV antibodies was lower than controls?

Though from what I've heard antivirals take years to work and in this day of quickly advancing research on CFS I have to wonder if it's worth starting such things

 

[ljimbo423]

So I'm positive for a number of EBV antibodies, every time I've taken an EBV test it comes up with a pattern that says the EBV is chronic/reactivated, does the new testing Ron Davis and others ran show that to be irrelevant or did they find that, of the many pwme's they tested, the number who had EBV antibodies was lower than controls?

Ron Davis ran a very precise PCR test, so they didn't get any false positives or false negatives. I think it was called a Multiplex. He explains in one of his videos that when these viruses are attacked by someones immune system, which is what causes symptoms.

Pieces of their DNA get into the blood and the PCR test is the best and most accurate test to find out if there is actual viral replication or if someone antibody levels are high for some other reason.

ME/CFS researcher Robert Naviaux, who is also a virologist of 30 years. Says the reason most people with ME/CFS have high viral or bacterial antibodies , is because of the immune system dysfunction, not an actual reactivation. This is a quote from Robert Naviaux-

Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule.

Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA.

link

Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased. This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies.

 

[ljimbo423]

Though from what I've heard antivirals take years to work and in this day of quickly advancing research on CFS I have to wonder if it's worth starting such things

You make a good point. I think the reason antivirals help some people is probably by modualting the immune system somehow and unrelated to viruses.

 

[heapsreal]

With the documented research of low nk function in cfsme, it makes it very possible that ongoing infections play a significant role cfsme. So treating any possible infection one has, could lower the infectious load and put less strain on oneself.

Also to confuse matters further. There are some long term lyme patients that have been treated with disulphirum/antabuse for 8 weeks, have had long term remissions, some for over 2 years. Its not 100% but it is happening.

Im sure theres some that are autoinflammatory and then combinations of the above.

For many years now nothing is black and white in cfsme or lyme just 50 shades of grey 😉🤣