If we don’t know how to get 100% better, do we at least know how not to get worse?

[hunter1899]

Dealing with my situation as it currently is is bad enough but I see folks on here with situations that are unfortunately far worse. Some of these folks started with a fairly mild case then got worse.

Do we yet know what causes CFS to go from bad to worse? PEM is bad enough in the way it makes you feel, but can it also cause permanent damage that makes you overall worse? Will just getting a common cold make me permanently worse?

 

[andyguitar]

Do we yet know what causes CFS to go from bad to worse?

Over activity is one thing to avoid. If you crash it can make things a lot worse.

 

[hunter1899]

Over activity is one thing to avoid. If you crash it can make things a lot worse.

it can make things worse permanently?

 

[andyguitar]

Yes

 

[Jessie 107]

@ hunter 1899
I am severe and bedbound, I pretty much can blame myself for the decline in my health, I never paced any of my activities early in the illness. So I just got worse and worse I was always crashing.

Just try to stay within your energy envelope as much as possible, and rest well and then you will be more stable.

Good luck.

 

[Wishful]

years

PEM is bad enough in the way it makes you feel, but can it also cause permanent damage that makes you overall worse?

My guess is that yes, it could cause long-term, but maybe not permanent, effects in some people. For others, it doesn't. I've had PEM countless times, but I've never had long-term crashes or any other long-term effects from it. Likewise for viral infections: I've had only a couple (one was viral meningitis) since developing ME, but they only made my ME worse for a day or two; no long-term changes. For other people, it might be different. Unfortunately, the only way to know how these things affect you is to experience them yourself. If you're a pessimist, you can simply try to avoid things that could possibly cause long-term effects. If you're an optimist, you can at least not worry so much.

My ME started oddly: it seemed to be a type IV food sensitivity. When I stopped the type IV reaction, the symptoms remained, fitting the criteria for ME. My ME didn't really get worse over time; it just changed a bit. The good news is that I managed to accidentally cure several symptoms over my 19 years, so it is possible to make improvements. It's a matter of luck though, finding something that helps that way. Others have found one or more things (even complex cocktails) that help reduce some symptoms, through diligent experimentation. Then too, others have done diligent testing of various drugs, supplements and herbal remedies and found nothing that worked...yet. More common is to find a few things that work...for a while, and then they stop working.

To answer your question: no, we don't know how to not get worse. We have anecdotal reports of things that may have made some people worse long-term, but no way of knowing what is a significant risk for any other individual.

That might be a thread someone else wants to start: a list of things that have made some people worse long-term. A list for lengthy crashes might be good too. Hmmm, even a list for short-term worsening. Maybe we'd see some sort of pattern.

 

[hunter1899]

Glad to hear you’re feeling better. You said it was accidental. What do you mainly attribute it to? And how did your CFS start?

also good idea on the “what makes it worse” thread! Hip is so good at these types of things I wonder if he’s considering something like this. I am far too new to this to feel confident doing the topic justice.

 

[wabi-sabi]

I've gotten progressively worse since I first got sick. While there's been times I've been better or worse at pacing, I really think I just have a progressive form of the illness and nothing will keep me from getting worse. that isn't an exactly happy thought, but it does keep me from blaming myself for my illness which I find is important to my mental health.

 

[Abrin]

it can make things worse permanently?

This is just my own opinion but there definitely seems to be some indefinable point of no return.

The reason why I have this opinion is after being in the moderate category for decades, I sadly then found myself in a situation where I was forced into overexertion in order to make enough money to survive and pushing my body that way took me from being moderate to severe.

It then took me 5 long years in order to get my body back to moderate again. And that was five years where I no longer had to deal with the stress of work for a living or worry about my basic survival needs met.

While this is anecdotal, what I have gathered from that experience is that it is more than possible to reach a point in this illness if you became severe enough that it would take you more than the rest of your lifetime to recover from it.

 

[hunter1899]

I've gotten progressively worse since I first got sick. While there's been times I've been better or worse at pacing, I really think I just have a progressive form of the illness and nothing will keep me from getting worse. that isn't an exactly happy thought, but it does keep me from blaming myself for my illness which I find is important to my mental health.

so sorry to hear that. Do you mind telling me what brought on your CFS to begin with?

 

[hunter1899]

This is just my own opinion but there definitely seems to be some indefinable point of no return.

The reason why I have this opinion is after being in the moderate category for decades, I sadly then found myself forced into a situation where I was forced into overexertion in order to make enough money to survive and pushing my body that way took me from being moderate to severe.

It then took me 5 long years in order to get my body back to moderate again. And that was five years where I no longer had to deal with the stress of work for a living or worry about my basic survival needs met.

While this is anecdotal, what I have gathered from that experience is that is is more than possible to reach a point in this illness if you became severe enough that it would take you more than the rest of your lifetime to recover from it.

sorry to hear that but glad you came back down from severe. Do you mind me asking what caused your CFS originally?

 

[wabi-sabi]

I'm not sure, honestly. I had mono to begin with, I was living in a moldy apartment at the time, and the last straw was surgery. I often ask myself if only one of these had happened, would I still have ME/CFS? Did it take all three triggers or just one? I guess there's no way to know and asking myself about it is just a form of torturing myself rather than accepting that i have this disease and it's here to stay until Dr. Davis finds us a cure.

 

[Abrin]

sorry to hear that but glad you came back down from severe. Do you mind me asking what caused your CFS originally?

From the best that I can tell, I've had it since I was a child. My father also has ME/CFS.

 

[hunter1899]

I'm not sure, honestly. I had mono to begin with, I was living in a moldy apartment at the time, and the last straw was surgery. I often ask myself if only one of these had happened, would I still have ME/CFS? Did it take all three triggers or just one? I guess there's no way to know and asking myself about it is just a form of torturing myself rather than accepting that i have this disease and it's here to stay until Dr. Davis finds us a cure.

New here and not yet familiar with Dr. Davis. Are they even close yet?

 

[wabi-sabi]

New here and not yet familiar with Dr. Davis. Are they even close yet?

Maybe someone can direct you to the thread with his latest update? I think it just came out today.

And watch the movie Unrest if you haven't already. That's the best explanation I've seen yet and will introduce you to important people in the ME/CFS community.

 

[Wishful]

You said it was accidental. What do you mainly attribute it to?

My accidental cure for my Type IV food sensitivity was some curry I made with canned coconut milk that turned out to be "a bit off". That food poisoning gave my guts a good flushing out, and the next morning my food sensitivity was gone, after 2.5 years. My guess is that I had some microbe in my gut microbiome that was activating my immune system, and the flushing out gave my microbiome the opportunity to eliminate it completely. Antibiotics alone hadn't done the trick, because they may have reduced the beneficial microbes even more.

The other accidental cure was cumin (cuminum cyminum). I first noticed that something had blocked my expected morning increase in symptoms, after curry the previous night. Further experimenting identified cumin as being responsible. Taking a full teaspoon worth gave me temporary remission. After a couple of weeks of daily cumin, it stopped working. Years later I discovered that cumin could block my physically-induced PEM. After taking cumin every three days for a year or two, I found that I no longer got physically-induced PEM (can still get cerebrally-induced PEM). I had also been taking T2 or iodine every 21 days, to block otherwise worsening of my symptoms. That problem went away at, as far as I can tell, the same time as the PEM stopped, so I assume the cumin cured both problems.

Another accidental discovery was that my worsening of symptoms from eating meat could be blocked by taking carnitine. I had noticed that I had different sensitivities to different meats: I could tolerate up to 200 gms of beef, less than 30 gms of pork, and almost no chicken. Then I came across a list of foods containing carnitine, and I noticed that beef had lots, pork had about 1/6th that amount, and chicken had almost none, which was a suspicious match for my sensitivity. I tried supplemental carnitine, and it allowed me to eat meats without problems. I'm fairly sure that it was the palmitic acid in the meats, and carnitine is critical for transporting fatty acids across the mitochondrial membrane. After taking carnitine for a year or two, I no longer had a problem with meats without it.

My ME started with what seemed to be a type IV reaction to oranges. I had gotten a tetanus booster some months before that, which may have been the trigger. I'm not sure whether the type IV sensitivity was a result of ME or the cause.

 

[hunter1899]

My accidental cure for my Type IV food sensitivity was some curry I made with canned coconut milk that turned out to be "a bit off". That food poisoning gave my guts a good flushing out, and the next morning my food sensitivity was gone, after 2.5 years. My guess is that I had some microbe in my gut microbiome that was activating my immune system, and the flushing out gave my microbiome the opportunity to eliminate it completely. Antibiotics alone hadn't done the trick, because they may have reduced the beneficial microbes even more.

The other accidental cure was cumin (cuminum cyminum). I first noticed that something had blocked my expected morning increase in symptoms, after curry the previous night. Further experimenting identified cumin as being responsible. Taking a full teaspoon worth gave me temporary remission. After a couple of weeks of daily cumin, it stopped working. Years later I discovered that cumin could block my physically-induced PEM. After taking cumin every three days for a year or two, I found that I no longer got physically-induced PEM (can still get cerebrally-induced PEM). I had also been taking T2 or iodine every 21 days, to block otherwise worsening of my symptoms. That problem went away at, as far as I can tell, the same time as the PEM stopped, so I assume the cumin cured both problems.

Another accidental discovery was that my worsening of symptoms from eating meat could be blocked by taking carnitine. I had noticed that I had different sensitivities to different meats: I could tolerate up to 200 gms of beef, less than 30 gms of pork, and almost no chicken. Then I came across a list of foods containing carnitine, and I noticed that beef had lots, pork had about 1/6th that amount, and chicken had almost none, which was a suspicious match for my sensitivity. I tried supplemental carnitine, and it allowed me to eat meats without problems. I'm fairly sure that it was the palmitic acid in the meats, and carnitine is critical for transporting fatty acids across the mitochondrial membrane. After taking carnitine for a year or two, I no longer had a problem with meats without it.

My ME started with what seemed to be a type IV reaction to oranges. I had gotten a tetanus booster some months before that, which may have been the trigger. I'm not sure whether the type IV sensitivity was a result of ME or the cause.

Very interesting. Do you mix the cumin with water and drink it? And you said it stopped working when you took it every day, but if you take it only 3 times a week it is effective still?

 

[ljimbo423]

Do we yet know what causes CFS to go from bad to worse?

I've learned that stress of any kind will make my symptoms worse. Weather it's physical, mental or emotional. The last time I experienced high levels of chronic mental and emotional stress, I got much worse, for years.

I was able to function fairly well and was even doing a slow 15-20 minute jog every other day for several years. Several months after I got some really devastating news, my health just got worse and worse until I became mostly bedridden for 6-8 years.

I think the physical changes stress makes in our bodies causes PEM and if that stress is high enough for long enough, it can cause a lasting worsening of symptoms. Again, that stress can be physical too, not just mental or emotional.

By changing my diet and doing some other things, I've improved my health again to fairly mild symptoms most of the time. As long as I don't consistently push myself beyond my energy envelope.

My energy envelope is what I'm able to do without causing PEM.

 

[Rufous McKinney]

PEM is bad enough in the way it makes you feel, but can it also cause permanent damage that makes you overall worse?

I was mild for decades and able to work with some- limitations, mostly, for over 40 years.

I got much much worse- following 1) severe stress caused by external events; 2) four bouts of gastrointestinal events that seemed like near-death experiences each time; 3) possible additional exposure to environmental toxins.

I have never returned to my pre-Mild Condition (its been far worse for at least three years now).

I never had classic PEM symptoms and now: I have all the classic symptoms.

My theory- my brainstem collapsed further as the collagen kept breaking down.

 

[Rufous McKinney]

I often ask myself if only one of these had happened, would I still have ME/CFS? Did it take all three triggers or just one? I guess there's no way to know and asking myself about it is just a form of torturing myself rather than accepting that i have this disease and it's here to stay until Dr. Davis finds us a cure.

Some provocation- beyond simple exposure to the virus- seems at play. My brother and I- pretty similar yet- he didn't get trapped and I did. The male female thing- us females prone to autoimmune issues- may play an important role.

COQ10 not working for females- seems like that is a SIGNFICANT HINT as to- whats going on...(for those who can pick up on Hints).

I came back to the place surrounded by 280,000 acres of burned up. Letters in mailboxes saying- its Toxic. Get a Lawyer. Living in a small neighborhood, we observed ongoing LEAF BLOWER WARS occuring where in neighbors are blowing toxic ashes out of one yard, onto the street or into the neighbor. I was hit directly by the neighbor's leaf blower and the filth went straight into my face.

And over the next six months (and yes, it was a six month period) I worsened- massively.

Ah, anecdotally speaking....just another N=1 experience.