Running out of treatment options. What next?

[godlovesatrier]

@sebaaa It's a tricky one to figure out. Personally I find Naivaux's research very interesting, it seems a bit far fetched and may come to nothing, but if the treatment worked and the science wasn't wholly accurate, that would still be very interesting. I say this as a potential underlying root cause analysis as opposed to secondary symptom picture. Anyway I hope it works for you, I think finding out your particular flavour of ME and what you need to get better is a total minefield, even so I am going to try valtrex and if I can get my hands on it (currently sold out) valcyte. And some proper blood tests.

Good luck.

 

[Hip]

Here's a list of all the supplements & drugs that I've taken.

ME/CFS treatments worth trying which are not on your list include:

GcMAF (immunomodulator that activates macrophages)
Vitamin B12 methylcobalamin injections (or better transdermal B12 oils)
Rifaximin (if you have gut dysbiosis or IBS).

Nimodipine (improve blood flow to brain after some time)
Pyridostigmine (dramatically reduces PEM in some patients) — see the PEM Busters thread.
Epivir (for enterovirus ME/CFS — offers some mild benefits in some patients)

Dichloroacetate (DCA) — improves energy in studies (refs: 1 2). Tips for avoiding neuropathy side effects.
Piracetam (good supplement for brain fog)
Modafinil (stimulant drug for brain fog)

 

[Wishful]

For me I know a significant part of my ME/CFS is in the mitochondria. I had a temporary and significant improvement from CoQ10 so that's how I know.

A temporary reaction to CoQ10 is not sufficient proof that your mitochondria are involved. CoQ10 does have other biological functions that might have been involved (even without some other unknown factor being responsible). Maybe it was its effect on your mitochondria, but without other similar responses to things that alter mitochondrial function, I don't think that you should carve "my mitochondria are involved" into stone quite yet. Closing off other possibilities at this point is just limiting your ability to find other things that might work.

 

[Canned]

• Ampligen - Not available orally and expensive
• IVIG - Not available orally and expensive

Isn’t there an oral form of ivig?

Just theoretically, is it possible to get ampligen right now?
For corona treatment they also used drugs that are not FDA approved.. so I guess there must be a way

 

[sebaaa]

A temporary reaction to CoQ10 is not sufficient proof that your mitochondria are involved. CoQ10 does have other biological functions that might have been involved (even without some other unknown factor being responsible).

I doubt. By definition, CoQ10 "is a component of the electron transport chain and participates in aerobic cellular respiration, which generates energy in the form of ATP." So it's extremely likely that that's exactly what it did. Assuming otherwise, I think, just complicates things further.

Maybe it was its effect on your mitochondria, but without other similar responses to things that alter mitochondrial function, I don't think that you should carve "my mitochondria are involved" into stone quite yet.

It's true that I haven't had the same effect from other things that affect the mitochondria, but those "other things" affect different parts of ATP production process so I don't think it's fair to simplify it like that. Also, the research is increasingly showing that there are issues with the mitochondria in ME/CFS, which would make sense with PEM. Examples that come to mind are Fisher, Prusty, Fluge & Mella etc.

Isn’t there an oral form of ivig?

Not according to the Wikipedia page. Even if there was an oral form, it would be extremely expensive since IVIG takes so long to produce.

 

[Pyrrhus]

I believe many patients get an energy boost from supplements that boost mitochondrial function. This should not be surprising, since a more efficient mitochondrion produces more energy, and we could all benefit from some more energy.

But this doesn't necessarily mean that the cause of ME/CFS is faulty mitochondria. Let's remember that healthy people also get some energy boost from mitochondrial supplements.

There has recently been a lot of exciting discussion that mitochondria may be involved in the cause or development of ME/CFS. Recent studies looking at mitochondria in the blood have been quite thought-provoking. But this research is still in its early stages, so we have to avoid jumping to conclusions. It may turn out that there are some damaged mitochondria in a small part of the body, but the blood mitochondria are actually just fine.

Here's a recent paper that tries to summarize what we know so far about mitochondria in ME/CFS:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02452-3

Obviously, more research is needed.

Hope this helps.

 

[wabi-sabi]

This looks like a very interesting article. thanks for posting and I look forward to reading it....very, very slowly.

 

[Wishful]

Assuming otherwise, I think, just complicates things further.

It's wise to avoid complications when you have solid evidence that you are on the right path. Right now we don't know what is causing ME, so it's unproductive to close off paths of inquiry. It's just too early in the process for that.

This should not be surprising, since a more efficient mitochondrion produces more energy, and we could all benefit from some more energy.

That's not a sure thing either. Some studies have shown that PWME have normal levels of ATP, but still feel "fatigue" <not well-defined>. There are many other possibilities for the feeling of fatigue in ME, such as neurological alterations. It's certainly possible that that symptom is due to reduced ATP in a specific region of the brain, but in that case, we don't know what the dysfunction is and thus wouldn't know what treatments would theoretically help.

It may turn out that there are some damaged mitochondria in a small part of the body, but the blood mitochondria are actually just fine.

I have more acceptance for that possibility. I can't detect any issues with my blood or muscle mitochondria (seems like adequate ATP), so if there is dysfunctional mitochondria involved, I expect it will be in my brain, and probably in a limited region.

The article is interesting, but it boils down to: none of the studies have really proven anything. If the mito studies are done on blood or muscle tissue, I'm not expecting they'll find anything definitive. If they find anything, it might just be downstream effects of dysfunction elsewhere.

 

[sometexan84]

How long were you on Valtrex?

Valcyte for a week so far? You'll probably know if it's working if in a few weeks from now you start feeling really really bad. I'd stick w/ it though.

 

[jaybee00]

https://www.s4me.info/threads/short-summary-of-meds-i-tried-by-now.15454/

says phenytoin helped

 

[Mary]

@sebaaa - have you had Nutreval or comparable testing done? It showed a BCAA and B6 deficiency for me. BCAAs and B6 in the form of P-5-P have both helped me. Thiamine also has made a noticeable difference in my functioning, but it caused my phosphorous to tank due to refeeding syndrome, so I now take monosodium phosphate 2 or 3 times a week. Folate helped my energy but caused my potassium to tank, so I added in potassium gluconate. Hypokalemia is a very common reaction to folate and B12.

Also creatine HCL is helping my energy as well. It is supposed to be easier on the digestive system than creatine monohydrate.

And I started something called Cellfood 4-1/2 Smonths ago and it's helping as well.

And I'm taking lauricidin/monolaurin, hoping to kill viruses. I have a very low tolerance for drugs and am hoping this will be effective against EBV etc. without the effects of prescription antivirals. It has caused a herx reaction for me. So you might do some reading about this,.

I recently saw a video of a young woman who improved a lot with ubiquinol (instead of regular CoQ10) and major autohemotherapy (ozone IVs). The Cellfood I noted above is supposed to increase oxygenation in the body, and I believe it does. I'm also looking into ozone IVs and other ways to get more oxygen into the body.

 

[sebaaa]

How long were you on Valtrex?

I tried it on and off a few times. The longest I took it for was a week. I know that's not enough but I don't see myself coming back to it since Valcyte is really the same but just stronger.

have you had Nutreval or comparable testing done? It showed a BCAA and B6 deficiency for me.

No, I haven't. I've tried regular B6 and pretty much all of the B vitamins in the form of a B-complex supplement. I'm mildly curious about BCAAs and creatine since I saw you posting about it.

I recently saw a video of a young woman who improved a lot with ubiquinol (instead of regular CoQ10) and major autohemotherapy (ozone IVs).

Ubiquinol was the CoQ10 that improved my symptoms nearly instantly but only temporarily.

 

[Mary]

No, I haven't. I've tried regular B6 and pretty much all of the B vitamins in the form of a B-complex supplement. I'm mildly curious about BCAAs and creatine since I saw you posting about it.

If you need certain B vitamins, a B complex often will not do the job. I took a B complex for years but still ended up with a severe B6 deficiency and other B vitamin deficiencies I also have to take a high dose of methylfolate and methylcobalamin, and thiamine, all in addition to a B complex. Also a lot of B complexes are just not very good. Many of us need the bioavailable forms of the Bs - e.g., many complexes contain folic acid. Folic acid is synthetic and actually completes for absorption with folate, the kind our bodies can actually use, so folic acid can CAUSE a folate deficiency., I just recently read that the pyridoxine form B6 can do the same thing - that we need B6 in the form of P-5-P.

So I think Nutreval testing is really worth it if you can get it done. Medicare does pay for it. It's where I first discovered my leucine deficiency. I don't think that taking a B complex without noticeable results is a good way to find out if you need certain of the Bs.

 

[jaybee00]

https://www.rinvoq.com/

rinvoq treats fatigue in RA

Results that speak loudly.



RINVOQ helps:

• Tame joint pain, swelling, and stiffness
• Significantly reduce fatigue in some patients
• Stop further joint damage
• Improve physical function

 

[dahsar]

@sebaaa - have you had Nutreval or comparable testing done? It showed a BCAA and B6 deficiency for me. BCAAs and B6 in the form of P-5-P have both helped me. Thiamine also has made a noticeable difference in my functioning, but it caused my phosphorous to tank due to refeeding syndrome, so I now take monosodium phosphate 2 or 3 times a week. Folate helped my energy but caused my potassium to tank, so I added in potassium gluconate. Hypokalemia is a very common reaction to folate and B12.

Also creatine HCL is helping my energy as well. It is supposed to be easier on the digestive system than creatine monohydrate.

And I started something called Cellfood 4-1/2 Smonths ago and it's helping as well.

And I'm taking lauricidin/monolaurin, hoping to kill viruses. I have a very low tolerance for drugs and am hoping this will be effective against EBV etc. without the effects of prescription antivirals. It has caused a herx reaction for me. So you might do some reading about this,.

I recently saw a video of a young woman who improved a lot with ubiquinol (instead of regular CoQ10) and major autohemotherapy (ozone IVs). The Cellfood I noted above is supposed to increase oxygenation in the body, and I believe it does. I'm also looking into ozone IVs and other ways to get more oxygen into the body.

Yes I believe it’s oxygen into the body! How come I feel better when I take deep breaths? I believe this is a lead.

 

[keenly]

Since Circadian rythms control every system in our body, I would look at your environment.

 

[Marylib]

I hang onto a stash of isoprinosine in the event I want it to bring me out of a deep crash. I only bother with stuff that has given a response. It got me out of bed once. Not that the improvement lasted, but that's why I keep a stash. I think this batch was made in Poland and shipped from Ukraine. These days my limited supply of money goes to actual food, as fresh and nutritious as possible. Inosine, as opposed to isoprinosine, never did anything for me. And some non-outrageous meds help treat my symptoms, so I stick with that. Best of luck to you! Hope you find something that helps.

 

[lenora]

Sebaa......Hello, I don't have a lot to add to your problem (and it sounds like a big one), but I've spent a whole lot of years and $$$ on vitamins and supplements.

The one I would stay on is Curcumin, although I read much later on that it causes wakefulness. Well, since I'm one of the worst insomniacs you'll ever meet, I would suggest that you not take it near bedtime.

Also, CoQ10 is excellent for your heart. Please bear in mind that the heart uses the two different formulas as we age. This is important, so don't let it slid.

And curcumin.....You need the real thing, and while people think Turmeric contains it, it doesn't. I know, it can all get so confusing. You must be very smart to have kept it together for as long as you have.

I'm sorry that non of the obvious things have worked for you, but hate to see you go the the level of drugs that may cause cancer. Oh, that's a question I have: Are these drugs that may cause cancer, or are used as chemo drugs? There is a huge difference, as you know. Plenty of drugs are being used for off themed uses today. Is there any chance you could take some time off work to let you body rest before you start on such drugs? These are logical questions and I'd just hate to see you jump into things without giving your body a "time out."

Please know that wherever you go, whichever route you take, our good wishes will follow. Yours, Lenora.

 

[Wishful]

And curcumin.....You need the real thing, and while people think Turmeric contains it, it doesn't.

Could you explain that further? Checking online says that turmeric definitely does contain curcumin, at around 3% by weight.

 

[lenora]

Well, I should have done a better job of phrasing that,Wishful. If you take Turmeric capsules, not all have the same amount of curcumin in them. The one we take is Nature Made Turmeric (curcumin), and is the #3 Pharmacist recommended brand. It's tough to know if the supplments help, and it's one the reason that at age 73 I'm ready to drop out as old age things are beginning to take a lot of my time. I seem to have developed Autoimmune Encephalitis b/c of my body being out of balance with vitamins and supplements, and leaving important things like electrolytes as a separarate concern. I have very high blood pressure now, combined with extremely low. Try treating that one!! So I've decided to stop all the extra vitamins, except the realy important ones, and deal with what I have to at the moment. I don't want my family having to do anything for me, butyou' d be surprised by how small some of our choices are. Still, I have to make them...and it isnt' very pleasant.

Good luck with the vitamins/supplemnts and anything else you choose to do. Make your own choices, no one knows you like you know yourself. Yours, Lenora