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Giving Infectious Disease MDs one more try (no 3). The Lupus vs SEIDs Saga

gbells

Improved SEIDs from 2 to 5
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I thought I'd throw this experience out there. Yesterday I drove one hour to a remote infectious disease MD outside of the Raleigh Durham triangle (NC). The MD accepted Medicare (my insurance) and was recommended by a lyme disease group. I had previously seen infectious disease doctors at WakeMed (Raleigh 10 years ago) and Duke Hospital (Durham 1 year ago). The WakeMed one was clueless regarding SEIDs and left me in pain.

I visited Duke last year complaining of chronic headaches and a nonspecific Rocky Mountain Spotted Fever antigen test. The doc was skeptical because in 2014 after doing 6 months of GcMAF, I developed Systemic Lupus Erythematosis. He said said that most likely the test was a false positive from the Lupus. Since there was no way to confirm this I persuaded him to put me on doxycycline which he wrote for a 2 week rx. At the end of this period my headaches were reduced but recurred. I researched proper prescribing for people on lupus immunosuppressants and learned he didn't go long enough. I was able to get my PCP MD to extend the rx for 2.5 months and lo and behold my daily headaches were gone after stopping the antibiotic, disproving the ID MDs lupus theory.. I concluded that I probably had an unknown bacterial infection. Regarding the SEIDs the ID MD had no idea what to do.

Lately I've been reviewing the Montoya research showing improvements with antiviral treatments. In 2012 I was diagnosed with HHV-6 (around 5.6x normal). In 2007 I was diagnosed with acute EBV +AB VCA. However, since 2008 when I developed SEIDs, my EBV blood tests are all negative.

I visited an integrative MD in Cary, NC who didn't know the Lehrner/Montoya protocol and put me on six months of Valtrex (anti-EBV only) which was at the wrong dose and the wrong drug for HHV-6 +. I quit her in 2012 after waisting around $2-3k.

So yesterday I visited the new ID MD. He said his impression was that perhaps I didn't even have CFS and that most likely everything was due to the SLE (lupus) because one can have symptoms for years before getting a diagnosis. I said that was a possibility but that I really needed to rule out a possible viral infection. He said no problem, and ordered PCRS for Parvovirus, HHV-6 and EBV. I will get results in around 4 weeks or less. If these tests are positive then I'll probably do the Lehrner protocol with him for a year.

Has anyone with lupus had a MD check them out and find elevated viral titers on PCR DNA testing? Or not had them? I'm skeptical of the whole false positive lupus thing because the SLE is well controlled and the viral symptoms aren't improved. Symptoms that are from lupus are always better then the lupus is controlled.

I think that although this ID MD gave me the usual, "It's probably lupus" talk at least he was willing to check out the virus' possibility and was familiar with the Montoya research. Either way it will give me a better idea of what is going on with this/these disease(s).
 
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Hip

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He said no problem, and ordered PCRS for Parvovirus, HHV-6 and EBV. I will get results in around 4 weeks or less. If these tests are positive then I'll probably do the Lehrner protocol with him for a year.
The blood PCR for HHV-6 and EBV will typically come back negative even if you have a chronic active infection as indicated by high IgG antibody titers.

This is because very little virus is found in the blood in ME/CFS; the infections are thought to be in the tissues. So blood PCR is usually negative. And then the ID doctor will tell you that you do not have an infection, but this may not be true.

When you get tested for all the major viruses linked to ME/CFS, namely CVB, EV, EBV, HHV-6, CMV and parvovirus B19, ME/CFS doctors will normally use antibody tests not PCR. (The exception is parvo which can be detected by PCR even in ME/CFS).

If you have high IgG antibodies, that suggests chronic infection to an ME/CFS doctor. But the ID doctor will ignore high IgG and tell you it's just a past infection. Which again may not be true.

This is why it's a problem going to ID doctors; they do not understand ME/CFS.


I am working on new article on viral testing in ME/CFS, which is not complete but you can read it here.
 
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Hip

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I read the HHV6 website and they said that if the PCR was quantitative it would be diagnostic.
I am not entirely sure when PCR might be useful in ME/CFS, but if you read the Montoya or Lerner clinical trials on treating ME/CFS associated with the herpesviruses EBV, CMV and HHV-6, they use antibody tests.

Montoya's tests on one ME/CFS patient are listed in this post. You can see he mostly uses antibody tests, though there are a few PCR tests there too. And in this post. are Dr Chia's set of tests, again all antibody. And here are the set of lab tests ordered by Gordon Medical, all antibody.


The HHV-6 foundation is a good site, but is not purely about ME/CFS, but covers numerous diseases linked to HHV-6.
 

gbells

Improved SEIDs from 2 to 5
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746
Location
Eastern NC USA
There are two problems with antibody testing. First, having lupus, the doctor is automatically suspicious that it is a false positive due to the lupus. Second, even if I didn't have lupus like you said, they typically consider high IgG titer to be indicative of past infection. I think the doc ordered the Quantitative PCR so that should be able to confirm HHV6. So far the antibody testing for EBV antibodies came back neg, just like the 2012 results. Funny how that works, prior to SLE I was acute positive but it never seroconverted to chronic. That sounds like a possible hidden viral infection. Stay tuned.
 

gbells

Improved SEIDs from 2 to 5
Messages
721
Likes
746
Location
Eastern NC USA
The blood PCR for HHV-6 and EBV will typically come back negative even if you have a chronic active infection as indicated by high IgG antibody titers.

This is because very little virus is found in the blood in ME/CFS; the infections are thought to be in the tissues. So blood PCR is usually negative. And then the ID doctor will tell you that you do not have an infection, but this may not be true.

When you get tested for all the major viruses linked to ME/CFS, namely CVB, EV, EBV, HHV-6, CMV and parvovirus B19, ME/CFS doctors will normally use antibody tests not PCR. (The exception is parvo which can be detected by PCR even in ME/CFS).

If you have high IgG antibodies, that suggests chronic infection to an ME/CFS doctor. But the ID doctor will ignore high IgG and tell you it's just a past infection. Which again may not be true.

This is why it's a problem going to ID doctors; they do not understand ME/CFS.


I am working on new article on viral testing in ME/CFS, which is not complete but you can read it here.
This is exactly what heppened. Blood Quantitative PCR for both HSV-6 and EBV both were negative so therefore no active infection to treat.