New doc at Stanford

[AdamS]

Nothing I've tried has made a huge difference, including rituximab. I was better for 2-3 months until Feb. I was grocery shopping and cooking and even went to a movie. Now I can cook only about every week or two.

There is no cure. All a person can hope for small, incremental improvements.

Wow, that's pretty bleak...scares me that Rituximab didn't help you either, I had high hopes for the phase III trials in Norway but after reading reports from patients on here it doesn't sound so promising!

I used to eat half a bar of 85% dark chocolate daily before and after I got ME...it will probably make zero difference. High dose Ubiquinol Q10 does seem to help me a tiny bit but I sometimes wonder if it's just placebo.

One final thing, in a recent Q&A Fluge & Mella said:

The functional inhibition of the mitochondria is due to an immune response. It is not associated with classical inflammation.

Does this not go against Montoya's idea that ME/CFS is an inflammatory disease?

 

[IreneF]

Wow, that's pretty bleak...scares me that Rituximab didn't help you either, I had high hopes for the phase III trials in Norway but after reading reports from patients on here it doesn't sound so promising!

I used to eat half a bar of 85% dark chocolate daily before and after I got ME...it will probably make zero difference. High dose Ubiquinol Q10 does seem to help me a tiny bit but I sometimes wonder if it's just placebo.

One final thing, in a recent Q&A Fluge & Mella said:



Does this not go against Montoya's idea that ME/CFS is an inflammatory disease?

That's a good question and I can't answer it. There is other research that shows evidence of inflammatory cytokines, depending on how long you've been sick.

Really, all we have are sets of speculations. I don't think anyone, including Fluge & Mella, have done enough research to show a definitive cause or mechanism. I'm agnostic on all of this.

As far as the ritux--I don't think it helps everyone who tries it for rheumatic conditions, either.

 

[TreePerson]

Hi @IreneF. Would you mind me asking how long ago you took the rituximab and whether it helped at all? E.g. did you experience a delayed recovery of any kind? I had understood that recovery from rituximab doesn't last. Also do you know what helped you get better for 2 to 3 months until Feb?
Apologies for all the questions.

 

[BFitz89]

Wow, that's pretty bleak...scares me that Rituximab didn't help you either, I had high hopes for the phase III trials in Norway but after reading reports from patients on here it doesn't sound so promising!

I used to eat half a bar of 85% dark chocolate daily before and after I got ME...it will probably make zero difference. High dose Ubiquinol Q10 does seem to help me a tiny bit but I sometimes wonder if it's just placebo.

One final thing, in a recent Q&A Fluge & Mella said:



Does this not go against Montoya's idea that ME/CFS is an inflammatory disease?

This illness is so damn bleak. I can't believe there's literally zero understanding of it. It seems all these doctors are contradicting each other and not even a baby step in the right direction. It's very discouraging.

 

[Kati]

This illness is so damn bleak. I can't believe there's literally zero understanding of it. It seems all these doctors are contradicting each other and not even a baby step in the right direction. It's very discouraging.

Hi @BFitz89 there is hope to be had.

- Dr Davis and team are holding a symposium at Stanford next month. There will be attendees from as far as Australia. This in itself provides the best hope.
https://www.omf.ngo/community-symposium/

- Drs Fluge and Mella are expected to publish 2 clinical trials papers, one in the fall (Cyclophosphamide) and one in next spring (Rituximab). While we cannot tell whether these will prove conclusive or not, it will give us great indications on where our efforts should be directed next.

- NIH is working on their own extensive study. While this is a longer term project, there are some very bright investigators motivated in moving things forward over there, including Drs Vicky Whittemore and Avi Nath.

As in every disease, no drug will be perfect for everybody. There will be individual variation, some good responders and some non responders. There might be those who respond adversely. Unfortunately this is part of medicine. What is in my view important is access to several lines of treatment for patients. Biomarkers that define the disease and that subgroup them in order to find the most effective treatment for that particular subgroup.

We are headed in the right direction. Now is not the time to give up.

 

[MeSci]

Chocolate sweetened with xylitol is delicious!

http://www.plamilfoods.co.uk/no-added-sugar-chocolate/

I'm sure it's also available in the USA and elsewhere.

Mind you, 100g of xylitol-sweetened chocolate might give you the runs.

 

[IreneF]

Hi @IreneF. Would you mind me asking how long ago you took the rituximab and whether it helped at all? E.g. did you experience a delayed recovery of any kind? I had understood that recovery from rituximab doesn't last. Also do you know what helped you get better for 2 to 3 months until Feb?
Apologies for all the questions.

I took it several years ago and had at most two months of improvement. I don't regret my decision, but at the same time I wouldn't recommend it now because everyone outside of the clinical trial in Norway has had pretty much the same experience AFAIK. I don't know what rituximab's success rate is for other conditions, either. If you want to spend a lot of money on a crapshoot, it's up to you.

I've been scratching my head about my recent improvement followed by disimprovement. It could be just random. A lot of chronic diseases flare and recede, and it's not always possible to discern a trigger. It could have been a real improvement that would have continued if my friend hadn't died.

 

[TreePerson]

Thanks @IreneF. No I don't have a lot of money and I am in the UK so would not have access to it. I was just curious. I will google "crapshoot" but have the impression that it may not be something I'd want to do. LOL.

 

[IreneF]

Thanks @IreneF. No I don't have a lot of money and I am in the UK so would not have access to it. I was just curious. I will google "crapshoot" but have the impression that it may not be something I'd want to do. LOL.

I didn't know "crapshoot" is an Americanism. It means something (usually an action) that is risky or uncertain; a gamble. From the game of craps.

 

[cb2]

@IreneF how's it going with the doctor Bonilla protocol? I just met with him on Monday. I had been working with a retired nurse practitioner before she retired also. Dr. B is changing and adding some things to my protocol, similar to yours he gave some recommendations for the Tumeric /Mervia and dark chocolate give more details later if you're interested.

I likened him.. I'm was in bit of fog and he was talking a bit fast some of it was hard for me to follow.
He told me to keep working on pacing as well I feel like if I pace anymore I'll never get anything done.

Would love to here how it's going for you . I'm across the bay over in Oakland.
C

 

[EsetIsadore]

I have also seen Dr. Bonilla. So far, during the visit and in follow-up communications, I’ve been powerfully unimpressed. Despite having been provided loads of information on my case, he doesn’t seem to have any fluency in it. He seems to have pat ideas that he cannot back up with my own lab results. I’m happy enough to have the 1.5 ozs of dark chocolate (100%, in my case) per day. I’m willing to re-start LDN for an even lower dose trial .5mg). But I’m not at all interested in Valcyte. My viral labs are all in check now, at least for the moment. He showed no curiosity at all as to what I might attribute that improvement and could provide me with no reason why I ought to take an anti-viral beyond that he’s seen it work miracles in some and help a larger group of patients modestly.

 

[halcyon]

My viral labs are all in check now, at least for the moment

Does Dr. Bonilla run enterovirus serology as well?

 

[EsetIsadore]

In my experience, the Stanford Clinic is severely understaffed. I appreciate the research they’re pursuing as an institute. I’ve found them poorly set up on a clinical front to handle patients with ME/CFS, particularly at the more severe end of the spectrum. I hope they pause on accepting any new patients until they can build resources.

 

[EsetIsadore]

Does Dr. Bonilla run enterovirus serology as well?

Not with me. He seemed oddly myopic. That may in part have been because he hadn’t at all reviewed my case prior to my arrival and the first appointment was only an hour long. Many of us have rich, complex cases and making smart choices in diagnostic pursuits in our behalf takes time. My sense was that he ran the two labs he ran and offered the Rxs he did out of simple habit.

 

[Bander]

The idea of using dark chocolate has been around for a while. There was a study in 2010 that indicated improvement of symptoms for cfs patients. It was a small study, but it was double-blind. You can read more about it here.

In the study, patients were given 45g of 85% dark chocolate. For a long time I was doing this by eating four squares of a Lindt 85% dark chocolate bar daily. I think it helped improve my mood. I have stopped for now because I am experimenting with a ketogenic diet.

 

[EsetIsadore]

I’ve been having 1.6oz of Giddy Yoyo’s 100% myself.

 

[cb2]

I have also seen Dr. Bonilla. So far, during the visit and in follow-up communications, I’ve been powerfully unimpressed. Despite having been provided loads of information on my case, he doesn’t seem to have any fluency in it. He seems to have pat ideas that he cannot back up with my own lab results. I’m happy enough to have the 1.5 ozs of dark chocolate (100%, in my case) per day. I’m willing to re-start LDN for an even lower dose trial .5mg). But I’m not at all interested in Valcyte. My viral labs are all in check now, at least for the moment. He showed no curiosity at all as to what I might attribute that improvement and could provide me with no reason why I ought to take an anti-viral beyond that he’s seen it work miracles in some and help a larger group of patients modestly.

it's great your viral labs are in check. do you notice any reduction in your symptoms? do you have any idea what contributed to getting the viral levels down? that seems like good news.. and sorry he didn't give you any insight.

 

[EsetIsadore]

No current reduction is sxs, at least not steadily. I suspect seven weeks intensive inpatient Ayurvedic panchakarma care may have helped. To the extent viruses play or played a role for me (and I am sure that they have), they are far from the only assaults to my immune system.

 

[Mariesak]

I had to change an appointment at Stanford because the nurse practioner I was supposed to see retired. There was an opening to see an actual physician, so I took it. Saw him on Monday. His name is Hector Bonilla and he grew up very close to Dr. Montoya. He's harder to understand than Montoya but is like him in other ways. He thinks CFS/ME is caused by a viral infection of the mitochondria.

His recommendations:

200 mg co-enzyme Q twice a day on top of everything else

No d-ribose. He says the evidence isn't there.

Curcurmin. Don't remember the amount but I'm skeptical of the usefulness of the stuff.

Mediterranean diet. Lots of olive oil, walnuts, greens. No red meat. (The no red meat might be hard because my husband likes it.) I eat like that as much as I can anyway.

Re-start Valcyte (if my insurance will pay for it).

75-100 g dark chocolate a day (about one large bar) I am having a hard time eating that much.

De-stress. I think he would recommend meditation. I told him I spend a lot of time with my cat, and she's a destresser. He thinks the reason I've been in a prolonged crash is that a close friend of mine died in Feb.

What dosage of Valcyte does he recommend?

 

[Learner1]

I'm still on the Stanford wait list after 15 months....

However the ME/CFS doctor I did get into has had me on 1.it per day of Valcyte, which cleared my brain fog, increases my functionality, and improved my virus labs, after 8 months on it. I get my liver and kidneys checked every 2-3 weeks... They've been a little irritated, but I think I've been doing ok due to the liver support program I'm on.