Using a Sledgehammer to Crack a Nut

[msf]

It just occured to me that pretty much all the curative or partially curative treatments being trialled in ME are of this kind: Chia uses Oxymatrine to get rid of Enteroviruses; KDM uses antibiotics to get rid of Lyme; Fluge and Mella use Rituximab to get rid of certain autoantibodies (I know this is just one of their potential theories as to how it works, but as far as I´m aware they are all sledgehammers).

It seems to me that, whoever is right about the ultimate cause, the real challenge is developing a nutcracker for that problem (nut).

The fact that they are all using sledgehammers to get results also means that it is hard to determine exactly what kind of nutcracker is required (okay, the analogy sort of falls apart here, but hopefully you get the idea).

So, what kind of nutcracker do you think we need? I would say we need antibiotics that target persisters.

 

[duncan]

Or shooting a scatter gun into the rain.

Abx targeting persisters would be one part of a fix, in one situation.

 

[msf]

Jinx!

 

[msf]

I would also suggest that there is a need to develop non-sledgehammer/scattergun interventions for gut dysbiosis.

 

[Amaya2014]

Just being silly...I'm up for anything short of a lobotomy!

 

[msf]

So, the question is, is a lobotomy a nutcracker?

 

[Amaya2014]

So, the question is, is a lobotomy a nutcracker?

Psych doctors would probably say yes. As the patient would likely be unable to verbally articulate ongoing symptoms..it would be "recovery" in the psych world.

 

[Biarritz13]

Don't forget the antivirals and the Staphypan vaccine

There must be something that links all these drugs...

 

[Dufresne]

Until they can prove we have something that healthy people don't, I'd say our problem is far more complicated and is going to require all sorts of approaches to fix. I suspect immune drugs, specifically modulators, will be part of the answer.

 

[duncan]

I would imagine some of us vacillate. I know I do.

Some days I am sure I am infected with TBD's - and it is simply a matter of uncovering which TBDs, then contriving the right combination of abx and parasite killers and antivirals etc, and the right amount of time, in the right order....

Other times I am not so sure. Those are times when I think my immune system is broken, not simply broken, but broken, maybe by Lyme & Company, maybe by something else that was brought to life because of Lyme - like a HERV.

Or a combination other than retroviruses, perhaps I caught an enterovirus on top of Lyme - or visa versa - or an old smoldering HHV strain intertwined somehow, and that odd combination at just the right moment acted as a tipping point into ME/CFS.

So, how does one approach treatment in that context, I wonder sometimes.

 

[alex3619]

What nut? Why isn't it an olive? Until we figure out which nut it is we will be always swinging that sledgehammer in the hope it hits something, and does not do too much damage.

Before we figure out the best way to crack the nut, we need to find the correct prescription for our glasses so we can see which nut we need to crack.

 

[Gingergrrl]

Wouldn't it also matter what was found on testing? Like for me, I now know I am positive for two rare auto-antibodies (one that affects the calcium channels) that we plan to target but I am negative on every Lyme and TBD test from 2010-2015. I am positive on blood tests for MCAS and have all the severe clinical MCAS symptoms but negative on all kinds of other things.

So wouldn't the nutcracker need to target what we find as much as possible? I know my auto-antibodies and MCAS have no cure and it's all trial and error but it's much more focused than I was 2-3 years ago when I tried things out of pure desperation that made me worse. Not sure if this makes sense.

 

[Justin30]

There are 3 ways I look at the ME and CFS debachable:

1. ME is a true form of encephalitis or encephalomylyitis missed by the Drs and any bacteria, virus or immunresponse can cause the damage to the CNS and Brain. Permanent, Irreversible Damage

2. ME/CFS is an immune mediated response that dyregulates many systems of the body. Lowers immunity against many infections that causes system wide inflamation.

3. ME/CFS is an an autoimmune response damaging many parts of the body like you would see in SLE or MCTD.

Now what the Drs need to figure out is how to fix the problem.

I personally feel we are more educated than most Dr. But need a central online platform for Drs to use and pull information, ideas and knowledge from. I have a great idea for this just dont know if I have the energy to pursue or complete it.

 

[msf]

What nut? Why isn't it an olive? Until we figure out which nut it is we will be always swinging that sledgehammer in the hope it hits something, and does not do too much damage.

Before we figure out the best way to crack the nut, we need to find the correct prescription for our glasses so we can see which nut we need to crack.

Using a sledgehammer to crack an olive? That sounds even messier...

 

[msf]

Wouldn't it also matter what was found on testing? Like for me, I now know I am positive for two rare auto-antibodies (one that affects the calcium channels) that we plan to target but I am negative on every Lyme and TBD test from 2010-2015. I am positive on blood tests for MCAS and have all the severe clinical MCAS symptoms but negative on all kinds of other things.

So wouldn't the nutcracker need to target what we find as much as possible? I know my auto-antibodies and MCAS have no cure and it's all trial and error but it's much more focused than I was 2-3 years ago when I tried things out of pure desperation that made me worse. Not sure if this makes sense.

Yes, the tests are useful, but whilst you use a sledgehammer you can´t be sure that you know what you are doing. That doesn´t matter too much if it works, but the bad thing about sledgehammers is that they crack more than just the nut.

 

[Gingergrrl]

Yes, the tests are useful, but whilst you use a sledgehammer you can´t be sure that you know what you are doing. That doesn´t matter too much if it works, but the bad thing about sledgehammers is that they crack more than just the nut.

I agree but am willing to take some risks as my ability to breathe is so poor, I honestly do not feel I have much to lose anymore. They would be calculated risks with informed consent assuming I find a doctor who will allow me to do them as I am a huge anaphylaxis risk b/c of MCAS but on days like today, I honestly do not care.

 

[daisybell]

I'm not sure that rituximab is a sledgehammer.... It seems to me that it's the right tool for the job at least for a subset of people - until the researchers figure out some way of stopping the auto-antibodies from returning for good. I think I'd choose it over IVIG, if indeed I ever had/have that choice!

 

[Justin30]

I'm not sure that rituximab is a sledgehammer.... It seems to me that it's the right tool for the job at least for a subset of people - until the researchers figure out some way of stopping the auto-antibodies from returning for good. I think I'd choose it over IVIG, if indeed I ever had/have that choice!

You dont think Rituximab is a sledgehsmmer?

The drug wipes out half of your immune system...bye bye B Cells.

At least IVIG is lending you an immune system if yours isnt working....

Just my thoughts.

 

[Gingergrrl]

Am curious re: the two above posts (@Justin30 and @daisybell) why RTX is more of a sledgehammer vs. IVIG? I do not know the answer and am asking in complete seriousness b/c I may end up in the position of choosing.

It will ultimately depend on what my doctors recommend and what my insurance will authorize. I have another appt and test before anything is decided (so earliest would be in May where we really discuss the options.)

For me, in addition to what the doctors feel is safest,(and I now feel that none of them think I could survive plasmapheresis, it depends on:

- Which one actually targets my specific auto-antibodies that attack the calcium channels
- Which one is least likely to cause anaphylaxis
- Which one has an amount of fluid that my body could handle without getting into pulmonary edema

Maybe I should start a thread on IVIG vs. RTX and all of these "sledgehammer options" to not detract this thread in case it is the wrong place (although it seems to fit in here?) I cannot figure out which is better for wiping out auto-antibodies- IVIG or RTX- with the other two big guns being plasmapheresis and other immunosuppressants.

They all seem like sledgehammer options that a year ago I would not have considered but now that I have a more specific grasp of my problem, it might take sledgehammer to knock it out. Other approaches like anti-virals, etc, did not work for me. I have nothing against them and know they work for a certain sub-group, but I am definitely in the auto-immune group.

 

[daisybell]

I'm no expert, but from what I've read, IVIG can cause problems due to its nature of being pooled from thousands of donors. For instance, this site http://primaryimmune.org/treatment-information/immunoglobulin-therapy/ talks of some of the problems and side-effects. It seems to me that rituximab is actually associated with fewer side-effects, although some of the rare problems can be severe.