Push-Crash Phenomena

[Cort]

The push-crash phenomena -which I believe was first formally described by Dr. Cheney - involved responding well to something and then crashing. Dr. Cheney stated he could push patients in the direction of health and they'd do better and then crash. Its part of reason he believes (or believed) ME/CFS is a "protective state". Its been a fundamental part of my treatment problem for about 20 years.

For the first ten years nothing worked; after that, for some reason, almost everything worked but only for a short time. After a couple of sessions with a treatment - just as my energy got to a nice clean level (and I began wondering if this was 'it') I'd fall apart - I would get very jittery and have problems completing my sentences, my joints would ache (particularly the inside of my elbows for some reason) - if I kept up with it I'd fluey and very fatigued.

It doesn't seem to be a HERX - in a HERV you feel worse first and then better - as I understand (?).

I was reminded of it again by Ross's post:

I can say that nothing straightens me out faster than SAMe, which has to do with this process. Problem is that I cannot keep taking it because after 2-3 days I get the same terrible reaction that I get with many meds.....people call it sensitvity, but I don't think that's what it is. It feels more like slamming into a wall.....or like a toxicity. Many things do this to me. Regardless, it does no good to change the dose or the frequency, so I get to feel great for 2 days and that's it. I can certainly tell that SAMe is affecting something that feels very much a core issue with my ME/CFS. I also think that if we were to identify this "wall", we would then be looking the dragon in the face.

Ross later wrote

Yes, that sounds like the same thing Cort. "Throwing a wrench into everything", is a great way to put it. I have called it "Locking up", "Poisoned", and "getting toxic". Anything I take that "pushes" my system to function better works great for 2 days, then I crash. It feels like pushing the gas to the floor, and then after 2 days push the brake to the floor and hold both down. The same happens with SAMe, except that the initial good response is better than anything else I have ever taken, and it really feels like it's affecting a core problem.

 

[Martlet]

The only medication that has done this to me was Florinef. I went on a trial of it not long after I arrived in the States. For four weeks, it did nothing, then I was suddenly up and out of my wheelchair... then began a slow crash that the doctor doing the trial blamed on me. He upped the dose and wham! I was in a worse state than before, thin as a rake and convulsions. But wired. Always, always wired. In the end, I called my own doctor but could only mumble incoherently down the phone. Since then, I have been very leery about trying anything new.

If any other medication is bad for me, it lets me know within hours... almost always wiring me before the crash.

 

[Catseye]

pushing and crashing

I remember studying Cheney's articles about energy in depth and this is what I got:

A lot of this is the body's switch from aerobic energy production to anaerobic production, which is much less efficient - going from producing 36 ATP molecules per molecule of glucose to 2 ATP molecules per molecule of glucose. The reason the body will do this is when the metabolic system shuts down that is the body's production of antioxidant enzymes, like catalase and superoxide dismutase, the body can no longer scavenge peroxynitrite. Also it can't scavenge superoxide dismutase, but peroxynitrite is the real bad boy. This particular free radical that is a byproduct of energy production is so reactive, it can destroy tissue. The body shuts down energy production to prevent the buildup of this harmful free radical so it can't do any more damage.

You can take the energy supplements that the mitochondria need to make energy and give a huge boost to yourself:

magnesium malate, acetyl l carnitine, coq10, ribose, bioactive forms of B vitamins - try to include pantethine and folate

But you have to have the antioxidant enzymes in place or you will crash and burn right after you use your new energy. I found Biotec Extra Energy Enzymes that do the job. When I popped these pills for the first time, my brain cleared up very noticeably in thirty minutes and I could read more and stay up later at night. And I was able to use more energy, but still kept it in check so I didn't crash. I sure didn't expect the brain boost, that was a nice surprise. Guess I had a bunch of peroxy up there.

 

[CFS-FIBRO-LYME]

The push-crash phenomena -which I believe was first formally described by Dr. Cheney - involved responding well to something and then crashing. Dr. Cheney stated he could push patients in the direction of health and they'd do better and then crash.

It doesn't seem to be a HERX - in a HERV you feel worse first and then better - as I understand (?).

Cort,

I have late stage Lyme, CFS and Fibro, hence my login name.

Here is how a Lyme HERX goes:

If you treat with oral or IM antibiotics, you herx BAD and LONG. The measure of success is as long as you're still herxing, it is working. Like, as in YEARS of herxing. Seriously. And you very slowly improve, and very painfully. There will be periods of relative low level herxing, but many months of serious pain and debilitation. If it gets to be too much or life threatening complications emerge, you back off on the antibiotics until it becomes manageable again and repeat.

If you treat with IV antibiotics, the herxing may be less intense, but still typically remains while treating.

Also remember, different people with different immune systems respond differently. Some herx so bad no matter what they try, they simply avoid treatment, some have relatively mild to moderate herx reactions and some frequently have life threatening herx reactions. Main rule of thumb: everyone herxs on effective treatment. But you also notice you feel better, but typically very, very slowly and almost imperceptibly at first.

The theory is dead spirochetes are nuero-toxic and so until they clear your system, you herx. Adding a good detox agent like detoxamin suppositories or even cholyestramine (a cholersterol binding agent) help lessen the herx intensity for many who have tried, myself included. But they don't remove them completely.

Late stage Lyme disease causes all the same symptoms as CFS and clinically presents very similarily. There are subtle differences, I believe like all of the viruses associated with CFS for example.

In Late stage Lyme, Lyme tests are frequently negative because the immune system is so beat down it doesn't register a response any more. After typically years of high antibiotic treatment, a retest will typically register positive or at least show some bands indicating infection. And the tests suck for reliablility right now anyway.

You want to experience an intense herx and prove you have Lyme? Try 2-3 months of Flagyl 500 MG 2x/day. Add in doxycycline 100-200 MG 2x/day for a more complete and effective protocol. Flagyl kills the cyst forms and doxy kills the spirochete forms, leaving only the L-form or cell wall deficient forms to contend with. Don't expect to do anything but be bedridden in extreme pain during this time. If that is your experience, congratulations! You have Lyme!

Another distinction between Lyme and CFS I have noticed: LLMD's (Lyme Literate MD's) consistently say if you treat long enough with high dose antibiotics and get all co-inefections (babesia, erlichia, cat-scratch fever or bartonella, etc.) you will recover significantly. My experience and that of others with late stage lyme is no significant recovery to functional in those also diagnosed with CFS.

 

[Carter Burke]

I remember studying Cheney's articles about energy in depth and this is what I got:

A lot of this is the body's switch from aerobic energy production to anaerobic production, which is much less efficient - going from producing 36 ATP molecules per molecule of glucose to 2 ATP molecules per molecule of glucose. The reason the body will do this is when the metabolic system shuts down that is the body's production of antioxidant enzymes, like catalase and superoxide dismutase, the body can no longer scavenge peroxynitrite. Also it can't scavenge superoxide dismutase, but peroxynitrite is the real bad boy. This particular free radical that is a byproduct of energy production is so reactive, it can destroy tissue. The body shuts down energy production to prevent the buildup of this harmful free radical so it can't do any more damage.

You can take the energy supplements that the mitochondria need to make energy and give a huge boost to yourself:

magnesium malate, acetyl l carnitine, coq10, ribose, bioactive forms of B vitamins - try to include pantethine and folate

But you have to have the antioxidant enzymes in place or you will crash and burn right after you use your new energy. I found Biotec Extra Energy Enzymes that do the job. When I popped these pills for the first time, my brain cleared up very noticeably in thirty minutes and I could read more and stay up later at night. And I was able to use more energy, but still kept it in check so I didn't crash. I sure didn't expect the brain boost, that was a nice surprise. Guess I had a bunch of peroxy up there.

Yeah this is sort of how I understand it.

Also, when I had my mitochondria tested, I found there were numerous stages in energy production, which were each impaired to different degrees.

So by doing what a lot of people do, and trying individual supplements, the most likely outcome is that you'll improve one part of the system, but the others won't necessarily improve at all, and won't be able to keep up. (e.g. off the top of my head and possibly incorrect: you could improve the Krebs cycle but still be low on ATP -> like fitting a bigger carburetor on an engine but still having a blocked fuel pump.)

Which is why supplementing for as many parts of the system at once seems to be the way to pick yourself out of it. All those supplements you mention, basically. (I was also recommended 500mg Niacinamide.)

Supporting the antioxidant system seems important too, as energy production/muscle use leads to increased oxidant stress (?) and that can be what damages mitochondria in the first place.

Planned combination of mitochondrial support and antioxidant support seems to be the way to make progress. (Although for me it's still been very gradual, but consistent, progress. Far preferable to the erratic ups and down of years earlier when I was trying supplements out somewhat haphazardly.)

 

[ramakentesh]

I find that if I eat three mandarins before bed once a week Ill feel a definite effect the next day but if I do it more often I feel worse.
Same with a lot of the medications ive tried for POTS - butcher's broom helped the OI but soon pushed me over the 'jittery' edge, licorice I have to hold off if it stops working otherwise I go into 'jittery'/'migraine' land.
Im currently trialling panax ginseng and it seems to help but again every time I improve energy or OI the trade off is increased jittery/wired feelings.

My symptoms are primarily POTS related although Ive been diagnosed with CFS but without immune system disfunction.

 

[ramakentesh]

Im thinking perhaps a cycle of treatments/supplements might be an option? One day on licorice, one day on butcher's broom, one day on something else??