Stanford Clinic Treatment

[Martin aka paused||M.E.]

Hi folks!

I just wanted to ask if here are patients of Bonilla who could share the treatments used in Stanford MECFS clinic?! (Besides Abilify and Celebrex)

Thank you very much

 

[hmnr asg]

Hi folks!

I just wanted to ask if here are patients of Bonilla who could share the treatments used in Stanford MECFS clinic?! (Besides Abilify and Celebrex)

Thank you very much

I was a patient of Bonilla three years ago.
They put me on famvir and celebrex. Also they suggested LDN.
The next time i met him was abilify.

I think they went from a phase of using antivirals to using abilify. I havnt seen them in three years, so I'm not sure what they are up to in terms of treatment.

 

[Martin aka paused||M.E.]

I was a patient of Bonilla three years ago.
They put me on famvir and celebrex. Also they suggested LDN.
The next time i met him was abilify.

I think they went from a phase of using antivirals to using abilify. I havnt seen them in three years, so I'm not sure what they are up to in terms of treatment.

Did you have positive titers or why did they use famvir?

 

[hmnr asg]

Did you have positive titers or why did they use famvir?

I think at the time they were just throwing antivirals at everyone hoping it will work. As well as LDN.
I have my blood test results from then (stanford keeps all the data in a nice portal) so I can dig them up for you if you want. But im pretty sure there was nothing remarkable in my blood test.

 

[Martin aka paused||M.E.]

I think at the time they were just throwing antivirals at everyone hoping it will work. As well as LDN.
I have my blood test results from then (stanford keeps all the data in a nice portal) so I can dig them up for you if you want. But im pretty sure there was nothing remarkable in my blood test.

That’s interesting thank you!
Did you feel better though?

 

[leokitten]

Did you have positive titers or why did they use famvir?

While Bonilla and Co. might’ve been throwing herpes antivirals at anyone in the hope that it would work, most other ME specialists would not do that. They would do HSV-1 and HSV-2 PCR, EBV panel (VCA IgM, VCA IgG, EBNA IgG, EA-D IgG), CMV panel (IgM, IgG), HHV6 whole blood PCR (to check for ciHHV6), HHV6 panel (IgM, IgG).

Based on those results they would either not put you on any antivirals if you have no abnormal results, or only Valtrex or Famvir, or Valcyte. These herpesvirus bloodwork panels are very mature tests and wouldn’t really ever give false negatives. Only the EBV EA-D might be high normal if you took the blood in between reactivations, but the VCA IgG is going to generally be really high if you are having reactivations.

 

[Martin aka paused||M.E.]

While Bonilla and Co. might’ve been throwing herpes antivirals at anyone in the hope that it would work, most other ME specialists would not do that. They would do HSV-1 and HSV-2 PCR, EBV panel (VCA IgM, VCA IgG, EBNA IgG, EA-D IgG), CMV panel (IgM, IgG), HHV6 whole blood PCR (to check for ciHHV6), HHV6 panel (IgM, IgG).

Based on those results they would either not put you on any antivirals if you have no abnormal results, or only Valtrex or Famvir, or Valcyte. These herpesvirus bloodwork panels are very mature tests and wouldn’t really ever give false negatives. Only the EBV EA-D might be high normal if you took the blood in between reactivations, but the VCA IgG is going to generally be really high if you are having reactivations.

I have very high IgG titers for HHV6 (1:320) so I think it might be an inactive infection (what Prusky talks about)

 

[leokitten]

I have very high IgG titers for HHV6 (1:320) so I think it might be an inactive infection (what Prusky talks about)

Valtrex and Famvir do not have any efficacy against HHV6. Only Valcyte has partial efficacy against it. You have to do very regular liver function tests. There are some side effects and possible long-term effects.

Herpes antivirals, if they are going to work at all, take many months before you start noticing any improvements, and require even up to a couple years of daily treatment to gain significant permanent improvements. It’s a marathon.

They also require a pretty strong policy of aggressive resting and pacing, minimizing PEM, and no crashing. My personal opinion, but if you are still working a lot and doing all that exertion it’s more likely than not that they will be a waste of effort and time given the testimonials of pwME for whom they did and didn’t work.

I am a model ME candidate for antivirals, super high EBV (1:5120), CMV (12-14) and HHV6 (1:1280), super high EBV EA-D (>= 1:640). I took Valcyte for two years and Famvir together for even longer. Was working, overexerting, and crashing constantly. They didn’t do shit.

See this page for Dr. Lerner’s Valcyte protocol https://www.healthrising.org/treati...nciclovir-for-chronic-fatigue-syndrome-mecfs/

 

[Martin aka paused||M.E.]

Valtrex and Famvir do not have any efficacy against HHV6. Only Valcyte has partial efficacy against it. You have to do very regular liver function tests. There are some side effects and possible long-term effects.

Herpes antivirals, if they are going to work at all, take many months before you start noticing any improvements, and require even up to a couple years of daily treatment to gain significant permanent improvements. It’s a marathon.

They also require a pretty strong policy aggressive rating and pacing, minimizing PEM, and no crashing. My personal opinion, but if you are still working a lot and doing all that exertion it’s more likely than not that they will be a waste of effort and time given the testimonials of pwME for whom they did and didn’t work.

See this page for Dr. Lerner’s Valcyte protocol https://www.healthrising.org/treati...nciclovir-for-chronic-fatigue-syndrome-mecfs/

I won’t take them because of the pricing

 

[leokitten]

I won’t take them because of the pricing

I thought in Germany insurers do cover many off-label prescriptions, especially generics as they are much cheaper. Why do you have to pay for all your drugs yourself?

 

[Martin aka paused||M.E.]

I thought in Germany insurers do cover many off-label prescriptions, especially generics as they are much cheaper. Why do you have to pay for all your drugs yourself?

In Germany insurances don’t cover any off-label uses