Running out of treatment options. What next?

[sebaaa]

I'm running out of options. I don't know what drug to try next. I've tried about 70+ supplements, 10+ drugs, many diet changes and had countless diagnostic tests. But nothing has helped me and I'm gradually getting worse and worse. I'm already severe and moving towards very severe/bedbound.

That's why I feel that the only option is to take a drug which has a strong effect, like cancer drugs. I'm currently taking Valcyte. I've been on it for a week, and intend to take it for 2-3 months. But I don't know what to try next. I'm probably going to try Vorinostat, which is used for cancer, next but beyond that I don't have anything else. Here are a few that I've considered:

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

Effects of Vorinostat (HDAC inhibitor):

• Significantly alters gene expression
• Degrades mRNAs
• Alters the activity of many transcription factors, including HSP90, NFκB, and p53
• Reactivates viruses including EBV and HHV-6
• Effects on mitochondria e.g. elongating mitochondria

So I don't really know what to try anymore after Vorinostat. I'm open to any suggestions but it should be oral and have a strong effect...

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

 

[andyguitar]

You could give Branched Chain Amino Acids(bcaa) a try.

 

[Wishful]

That's quite the list. Did any of them have a noticeable negative effect?

If you want more things to try, go to the spice rack at your grocery store. I've had better luck with herbs&spices than with prescription drugs. Also, since there's no real theory for what is involved with ME yet, there's really no point in limiting yourself to drugs based on theories. My most effective treatments have been accidental discoveries, from things that were already in my kitchen. From my perspective, the chances of <powerful, expensive, hard-to-get drug> working for you is really no better than the chance of an herb or spice or even a jellybean (weird artificial flavourings and colourings) working.

FWIW, T2 (3-5 diiodothyronine) worked well for me, and iodine worked just as well. However, no one else yet has reported similar benefits, and the same happened with cumin (cuminum cyminum). Maybe if you experiment with herbs&spices, maybe one will provide a major benefit for you...and won't work for anyone else. Maybe it'll be spearmint, or one of those weird Chinese mushrooms that is prescribed for something totally unrelated to ME.

 

[JES]

That's a pretty comprehensive list of drugs/supplements indeed and yeah, scrolling through it I got a deja vu from having gone through most of them at some point without much success either. Here is a recent list of recoveries documented, maybe you'll find a few more to trial from there. Not all treatments approaches are necessarily drugs/supplements either, some of the non-pill ones include CCI surgery, FMT, ketogenic diet, etc.

 

[Wishful]

That's why I feel that the only option is to take a drug which has a strong effect,

This sounds like the "Try a bigger hammer (or wrench)" approach. What it really does is make serious damage more likely. I did, at one time, try cyclosporin, which I'd put into the "strong effect" drugs. It had no effect on my symptoms. Later I found that it doesn't cross the BBB easily, and I believe that any immune system problems I have are limited to my brain, so it's no surprise that it had no effect. Conversely, what did have strong effects on my ME are things that don't get anywhere near the "strong effect drugs" category: a trace of iodine from a single multivitamin/mineral tablet, LDN, the cumin in curry powder. There's also all the tiny dosages of chemicals from various foods and ingredients that had a strong negative effect on my ME, whereas the potent immunosuppressant did nothing.

I certainly recommend experimenting with more safe things before resorting to "big hammers" that have very serious possible side-effects. There's a lot of safe things that have just as much potential to have an effect. You don't even need to test them one at a time: take a bunch of different things at a time, and if some beneficial effect does occur, you can then narrow it down. Of course, that does have the downside that one component could cancel out a beneficial one, but testing all possible treatments in all possible dosages and combinations would take longer than your remaining lifetime, so some compromises are necessary.

 

[gbells]

I think its important to do a good history exposing viral infections, animal exposures, stress, corticosteroids, and symptoms with date of onset then do lab testing to see what you can identify. I had a nagalase test that showed viral overload with a level 3x normal and pos HHV6 and coxsackie virus. My history included EBV and VZ. Treatment should be planned in a comprehensive manner for a specific purpose and I've found that supplements often need to be combined to work when they have a synergistic effect. I use inflammation responses, pain and other signs to guage whether a supplement is working. Also, I don't limit myself to supplements but include over the counter drugs and discuss rx drugs with my doctor. If you can present a good argument a good doctor will generally work with you. If someone isn't scientifically literate then they are more reliant on the ME doctors which are very expensive. At present we really don't have any great cures for ME so I wouldn't get my expectations up that there is some kind of holy grail waiting to cure you and restore you back to a pre-ME state (excepting simple enterovirus infection). However, for me improving sleep quality and improving my quality of life as a chronic ME patient were reasonable goals. Doxycycline did permanently cure chronic headache I had for 10 years as a result of a flea bite from a feral cat. Avoid strays.

 

[godlovesatrier]

I was just about to suggest what @gbells said. If you can pinpoint a potential viral or entereoviral infection, you could then try those routes of treatment. Which might help. That's what I am going to try and do again with a new lab Hip recommended.

 

[sebaaa]

That's quite the list. Did any of them have a noticeable negative effect?

No, not really. I think I got a bit dizzy from LDN though. A few had a temporary positive effect like CoQ10 and herbal antibiotics.

Here is a recent list of recoveries documented, maybe you'll find a few more to trial from there.

I've had a look at that one. In fact, that one inspired me to take Valcyte. But I've already tried most of the ones that I think are worth it like Tenofovir, Oxymatrine, Selenium, Inosine, keto, and the mito cocktail. There is barely any evidence for CCI, and a dangerous surgery doesn't sound too pleasant.

I looked at FMT a year ago since I thought my symptoms were from SIBO or from IBS but I don't think my symptoms are caused by that after I went through countless treatments for SIBO and IBS with no results. I don't think there's much evidence for FMT either, and it sounds like a massive hassle.

I remember there was a guy on reddit that had been attempting FMT more than 10 times for his ME/CFS. He was convinced that it would work, he just needed the "perfect specimen" or some kind of super athlete that had never taken antibiotics and therefore had the "perfect" gut microbiota. To me it just seemed like he was unable to realize that maybe this doesn't work...

I did, at one time, try cyclosporin, which I'd put into the "strong effect" drugs. It had no effect on my symptoms.

That's an immunosuppressant. From what I've understood, some people get better from them and then get significantly worse so I would steer clear from those.

The reason why I'm going with heavier drugs is because then I can be certain that it's going to have a strong effect. With supplements or herbs you're probably not going to have any effect, or the effect is so light that it doesn't matter. Most of them don't even get absorbed into the body in significant amounts to have an effect. There's a reason why many drugs have side effects. If they're going to have some sort of significant effect on the body, we can assume that that's also going to go the other way too.

Compare something like L-Carnitine to a JAK inhibitor like tofacitinib... The latter is going to have significant effects on the body, while L-Carnitine is unlikely to do anything at all unless you're deficient, and most people aren't.

I certainly recommend experimenting with more safe things before resorting to "big hammers" that have very serious possible side-effects. There's a lot of safe things that have just as much potential to have an effect.

I don't really mind the side effects. My ME is constantly getting worse, and every supplement or herb I purchase is money thrown away at this point when I have a limited amount of money.

If you can pinpoint a potential viral or entereoviral infection, you could then try those routes of treatment.

I've had some viral testing done but it hasn't shown anything significant, though the viral testing didn't have titres since that's not available in my area. Either way, I'm taking Valcyte for herpesviruses (EBV & HHV-6) and I tried oxymatrine and inosine for enteroviruses but it had no effect.

 

[godlovesatrier]

It is possible you're suffering as many of us are from a root cause, metabolic trap, cell danger response theory, Davis' energy transfer work. As opposed to just a viral infection. Of course it's a bit chicken and egg at the moment, but I guess some of us here may be chicken and some of us egg. Suffice to say if it's the underlying ones we have, those are far trickier to treat.

I'm trying to get titer tests as well, hoping I have found some, just finding out at the moment. I'm sorry none of those worked, oxymatrine just made me crash while I was taking it and I couldn't withstand that while working full time. When I came off oxy I had to take 3 weeks off work, it was the worse crash I ever experienced. Suffice to say self treatments aren't easy but I do hope you find one that works. Im sure someone will have some ideas. Good luck.

 

[Wishful]

With supplements or herbs you're probably not going to have any effect, or the effect is so light that it doesn't matter.

Actually, I've had my strongest improvements from a spice (cumin) and supplements (T2 or iodine, and carnitine), and no response from the strongest (cyclosporin). The trace amount of iodine from a single multivitamin tablet triggered temporary remission, and the small amount of cumin in a meal of curry was enough to noticeably block expected worsening of symptoms. A capsule of carnitine was enough to allow me to eat a significant amount of meat without triggering symptoms. It only takes a tiny amount of the right chemical to have an effect on ME.

A dangerous prescription drug might have a major effect on cancer cells, for example, but that's not much help if you don't have cancer. We don't know what the target is for ME, so what powerful drug should you take to hit the target? I think you have a better chance of registering a hit if you fire a lot of paintball pellets all over than if you fire a single 700 Nitro Express round at random.

 

[wabi-sabi]

@sebaaa The general consensus I'm getting is that a chemo drug won't help you and might cause serious damage. People who have cancer and need chemo have quite unpleasant side effects. I can't imagine what that would be like combined with the ME/CFS illness.

We all understand your desperation. What can be more terrifying that watching yourself get sicker and sicker with no end in sight? But don't let that fear and desperation make you do something rash.

 

[percyval577]

Try very low dosages. Sounds like a joke, but I mean it seriously - though prerequisite may be to know, what to avoid. You could also start to check different orders.

 

[gbells]

Actually, I've had my strongest improvements from a spice (cumin) and supplements (T2 or iodine, and carnitine), and no response from the strongest (cyclosporin).

C3 time release turmeric (curcumin) is an excellent way to block Nf-kB inflammation caused by viruses (EBV, HHV6). I've been using it for years.

 

[Swim15]

How long did you run the antivirals? High dose Valcyte seems effective for a lot of people but you need to give it 3-6 months to evaluate

 

[Wishful]

C3 time release turmeric (cumin)

I think you mean curcumin, not cumin. I'm contrary: cumin was good for me and turmeric makes my symptoms worse.

 

[gbells]

I think you mean curcumin, not cumin. I'm contrary: cumin was good for me and turmeric makes my symptoms worse.

Yes I did. Thanks for the typo catch.

Curcumin helps the inflammation but it could also allow some apoptosis which would be painful or even partial apoptosis which is painful. I suspect your dose was too low and you weren't on enough pain medication. I think that the curcumin can slow the progression of ME so its worth putting up with it.

 

[Wishful]

I suspect your dose was too low and you weren't on enough pain medication.

It didn't cause pain; it just made my ME symptoms in general much worse. I think turmeric has too many possible biological functions to figure out why it's doing what it's doing. All the peroxynitrite scavengers I've tried (turmeric is one) have the same effect, so I suspect that's why, but I'm not sure. I certainly don't want to try larger doses.

I think that the curcumin can slow the progression of ME so its worth putting up with it.

My ME hasn't "progressed" noticeably since 2001, so I really don't want to put up with the unpleasant effects of turmeric to try to slow it further.

 

[dreamydays]

Hi, I feel for you. I have tried nearly everything under the sun. Please read my recent threads for more information. I have tried most things on your list as can't really see any that help from my experience (with the exception of Neem, which I found slightly effective and Oxymatrine which we have had some success with) and I am starting to work on my next steps. Vorinostat seems on the harsher end of potential trials, but as a guinea pig myself I would put it my long list, so to speak. There are some other potential options, see my threads and also some promising peptides).

 

[sebaaa]

It is possible you're suffering as many of us are from a root cause, metabolic trap, cell danger response theory, Davis' energy transfer work. As opposed to just a viral infection.

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. I think Prusty might have it right, hopefully, that viruses cause the mitochondria to malfunction but I don't know how to reverse that. One thought that I have is, from looking at his work, is that this may be due to mRNAs, miRNAs or ncRNAs. My hope is that vorinostat can do something about this by heavily modifying gene expression.

The general consensus I'm getting is that a chemo drug won't help you and might cause serious damage. People who have cancer and need chemo have quite unpleasant side effects. I can't imagine what that would be like combined with the ME/CFS illness.

But yet we just had the Cyclophosphamide trial which apparently helped some people. I know it didn't have a placebo arm which is a problem. I do generally agree with you. A chemo drug isn't something light. Vorinostat, which is used as an adjunct therapy for multiple myeloma, is however much lighter than other chemo drugs. If you compare the side effect profile to something like Sorafenib, there's a massive difference.

How long did you run the antivirals? High dose Valcyte seems effective for a lot of people but you need to give it 3-6 months to evaluate

I've been on it for over a week now. I have a supply for 2-3 months. I don't have the patience to try it for longer than 6 months.

Hi, I feel for you. I have tried nearly everything under the sun. Please read my recent threads for more information.

It's interesting that you tried Tofacitinib. I was interested in that after I saw a study on RA, where it had a significant impact on the mitochondria. But I guess since it didn't work for you there's probably no point...

 

[dreamydays]

I try these things not just for me, but for all of us. I genuinely want to find options which will lift a lot of us up.

This is what I took https://www.buy-pharma.md/Xeljanz-Tofacitinib-p-3354.html?keyword=Xeljanz, Tofacitinib

It's a trusted pharmacy, I have no doubt the tablets were the real thing (Turkish). I had no side effects, but every day I woke up hoping to feel a change but it didn't happen. Like I said, there could maybe be a benefit from taking it if you feel a crash coming on, but I can't really be sure. I also tried taking a higher dose but no change.