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Dr. Montoya/Chronic Fatigue Syndrome News Coverage

Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
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971
http://abc7news.com/health/stanford-leads-fight-against-chronic-fatigue/1443095/

They talk to a patient of his who had mono, developed "Chronic Fatigue Syndrome", so sick her father had to pick her up and carry her to the bathroom. After Dr. M's treatment she was able to go to college, grad school, and work full time.

Dr. Montoya is finding encouraging results with using drugs with both antiviral and antiinflamitory properties, says they still need clinical trials. Anyone know what this combo is?

They also say he has now received a grant from the NIH to continue his work on "Chronic Fatigue Syndrome". Anyone know anything about this?
 
Comet

Comet

I'm Not Imaginary
Messages
693
Sorry, I don't know the answer to your question. But it's great that this is on the ABC news website! Too bad the title is "Stanford Leads Fight Against Chronic Fatigue" but I thought it was a great piece. :)

Maybe some requests in the comments, and some thank yous could get the title changed?
 
junkcrap50

junkcrap50

Senior Member
Messages
1,333
That would be great to find out what drugs they are! I imagine maybe someone could find them if they dig around Dr. Montoya's research papers or interviews. I can't imagine it's a secret or anything. Some enterprising person could tweet or facebook message the patient, Kelsey Vischer, and ask her what drugs the clinic uses.
 
Never Give Up

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
junkcrap50 said:
That would be great to find out what drugs they are! I imagine maybe someone could find them if they dig around Dr. Montoya's research papers or interviews. I can't imagine it's a secret or anything. Some enterprising person could tweet or facebook message the patient, Kelsey Vischer, and ask her what drugs the clinic uses.
Click to expand...
I'm guessing there are people on PR who are taking the meds.
 
junkcrap50

junkcrap50

Senior Member
Messages
1,333
Another article describing a Dr. Montoya success story but doesn't list the drugs. It only says antiviral + anti-inflammatory + immune modulator drugs.
http://www.oprah.com/health_wellness/Chronic-Fatigue-Syndrome

This article mentioned high dose antivirals and POTS medication. Even says Dr. Montoya doesn't know why these drugs worked for the patient, Erin. But "from treating other patients [he knew] that beating back viral infections sometimes helps get an immune system back into balance."
http://stanmed.stanford.edu/2014fall/immune-system-disruption.html

Yes, I'm sure searching the forums would give the answer.
 
Sushi

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Butydoc said:
The third time I started Valcyte was 6months after I stopped the second time. This time I was started on 225mg/day and increased only to 450mg day. My clinical response has been great. I've gained weight, strength, endurance and less PEM. Montoya told me he was using Valcyte with me as a microglial inhibitor and started acyclovir as a antiviral and celebrex as a anti-inflammatory. He also believes that I should be on the Valcyte for at least 2 years.
Click to expand...
 
frog_in_the_fog

frog_in_the_fog

Test Subject
Messages
253
Location
California
JayS said:
http://scopeblog.stanford.edu/2016/07/26/a-look-at-the-fight-against-chronic-fatigue-syndrome/
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From Stanford website:

Collaborating with the Neuroradiology Department at Stanford to investigate the role of novel magnetic resonance imaging (MRI) techniques (e.g. using a 3T magnet) in the hope of discovering biomarkers in the brain for infection-associated ME/CFS
These MRI tests are not currently available for routine clinical use.
Our collaboration with Michael Zeineh, MD, Assistant Professor of Radiology at the Stanford University Medical Center, and his neuroradiology fellows, yielded the first ever study to use a novel magnetic resonance imaging (MRI) technique, diffusion tensor imaging (DTI), in visualizing ME/CFS brain function. Our preliminary data suggests that an abnormality in right arcuate fasciculus in ME/CFS patients might be a biomarker for this disease. We published a paper on these preliminary results. Additionally, we have submitted a grant proposal that will validate these findings in a larger group of ME/CFS patients and hopefully uncover the connection between ME/CFS and brain abnormalities.

radiol.14141079.fig3.jpeg
​
 
I

IreneF

Senior Member
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1,552
Location
San Francisco
I saw Montoya last week. Dr. Zeinah was there, I'm not sure why, because he didn't say much. Montoya's really interested in the radiology studies.

I am currently taking colchicine (anti-inflammatory), Famvir (because my insurance co. stopped paying for Valcyte), and LDN. I took Plaquenil in the past but stopped because of potential side effects.

Montoya no longer tracks viral antibody titers because he didn't see any cause and effect between a person's antibody levels and their symptoms. He is much more interested in pursuing the inflammatory aspects of the condition.

He did not bring up Celebrex but he does want me to be seen more frequently.
 
frog_in_the_fog

frog_in_the_fog

Test Subject
Messages
253
Location
California
IreneF said:
Montoya no longer tracks viral antibody titers because he didn't see any cause and effect between a person's antibody levels and their symptoms. He is much more interested in pursuing the inflammatory aspects of the condition.
Click to expand...
Hmm... Now that is interesting. I wonder what approach they will come up with for me, since all the titers they tested came back low. I might want to see if they can generate one of those funky CGI structures from my head. That visualization looks kind of scary and weird, something out of a sci-fi film.
 
J

Justin30

Senior Member
Messages
1,065
The one thing i wish all these Drs would do is tests.

That show the abnormality and then connect it to a exactly all symptoms experienced.

Same with POTS if the patient has it. Type symptom cluster and affect.

The reason I say this is to subtype the patients.

In my discussions with others here on PR. There seems to be subtypes or separate diseases.

The sooner I feel that they subtype then sooner we will know what meds work for who.

Get some publishing....done so that we are not just left with CBT and GET.
 
P

perrier

Senior Member
Messages
1,254
In addition to good testing, we need physicians really communicating,and that is not happening to the extent it did with AIDS. You read anti virals work for dr Montoya, then other things work like mestinon administered by other doctors, and on it goes. Folks can't just go to every doctor, even though most patients have been to at least 15!

Reading about the suicides is extremely nerve wracking, heart breaking, and deeply unsettling.
 
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