Cured Myself After 4 Years of CFS

[dannybex]

...I think a lot of what is happening with CFSers is they get an initial infection, they jump on antibiotics, and the pathogenic bacteria have nothing opposing it.

That's awfully presumptuous. Many of us have never taken antibiotics since becoming ill.

Bacterial fermentation as everyone knows is a natural part of the digestive process. Nutrients are reabsorbed past the stomach. If the right bacteria, which in my opinion are not lactic acid bacteria predominately but most likely soil based organisms are not present, then the watery diarrhea will continue and bad bacteria will multiply completely unchecked.

This is a simple concept that all of you are probably already aware of.

The understatement of the year.

I am never touching another probiotic that contains a lactic acid producing bacteria again. I don't want more lactic acid generated all day long. High lactic acid is one source of fatigue, and a very efficient source at that. Several doctors have even said that as long as 85% of the bacteria in the gut is good 15% can be bad without symptoms appearing. That is the key. And I believe non lactic acid producing probiotics are far superior because they do not pose a metabolic burden.

What works for one person will not necessarily work for another, as we all have different combinations of trillions of bacteria in our guts. While some may have excessive levels of lactic acid producing bacteria, others may not. Many have found to be low in the bifidus strains, but others may have surprisingly high levels as well.

I don't mean to be dismissive, but please keep in mind that there are many components, many triggers and other factors involved in this illness besides the right kind of probiotics and daily doses of florinef.

I also think it's extremely premature to claim that you've cured yourself of CFS, especially when you posted just last week that you were diagnosed with metabolic acidosis on this thread...

http://forums.phoenixrising.me/index.php?threads/lactic-acidosis-from-probiotics.17564/

...and described your protocol as a "band aid solution for now".

Don't get me wrong, that's great if you're feeling better, but I'd stick with that previous description over calling it a 'cure', let alone promoting it as one.

 

[valentinelynx]

No antibiotics. Thought I had a viral illness. Why would I take antibiotics? Suppose I wrote a book after I "recovered" back in 1997 (after 4 years of illness)? I might have recommended some of the many things I'd been doing to try to get better, some of which I know helped: Tibetan Medicine, Jon Kabat-Zinn's Mindfulness Meditation program, caprylic acid, tramadol, and ketamine (Jay Goldstein responsible for the latter 2, which worked wonders). Unfortunately, when I relapsed, these didn't do the trick the second time! I hope you never relapse. Partial recovery is common after 4-5 years. Doesn't mean the illness is gone. Please be vigilant about your health. I went to medical school during my years of feeling better. Now I'm an MD. One that is ill with ME/CFS.

 

[Jenny]

I had no antibiotics immediately before I got ill 30 years ago either.

Jenny

 

[jace]

I've got some really bad news for the original poster, if he really has ME/CFS. Dr Bell, who was in the center of the Lyndonville Cohort, and has about 30 years experience in treating this disease (circa 200 cases) says that many people get what they consider as better in the first five years, but then slide back into the disease. I made this crude graphic using his figures. The horizontal scale is number of years, the vertical scale indicates disease severity, higher being more severe.

 

[taniaaust1]

No antibiotics. Thought I had a viral illness. Why would I take antibiotics? Suppose I wrote a book after I "recovered" back in 1997 (after 4 years of illness)?

Same here.. what fixed me first time around, didnt work the second time. I had a remission about 5-6 years into this illness.

Dr Bell, who was in the center of the Lyndonville Cohort, and has about 30 years experience in treating this disease (circa 200 cases) says that many people get what they consider as better in the first five years, but then slide back into the disease.

I'd like to say that also Dr Cheney talks about that too and has had many patients get remissions for while.

 

[justy]

Hi, i DID have lots of antibiotics before my severe relapse 4 years ago. I also have taken a lot over my whole life as i have a lung disorder and now fibrosis in the left lung. Before my relapse i had measles whihc rthen turned into pneumonia and a 10 month antibiotic and steroid ordeal. 14 courses of anitbiotics, 3 courses of high dose steroids then left on too high a dose of inhaled steroids. My health literally collapsed under the weight of the medical 'help' i recieved and since then have found some improvements with naturopathic medicine. The gut is still not right, but i dont even know where to begin. One thing thats been great about the herbs i take is no lung infection for over 2 years - thats the longest period without one since i was 5 in 1974!
I am not really up on too much of this stuff and wonder what are the types of probiotics that could cause lactic acid overgrowth and also how could i get tested for these issues (in the uk?)
BTW i dont have a problem with you or anyone writing a book, but you should be aware that touting for business is against the forum rules. You may feel you were not touting for business - in which case i would suggest not leading people on with snippets of info. Why not just tell us what will help - thats what everyone else on here does. We are a community of people who meet for support and to find solutions to our health problems. Be a part of the solution.
All the best, Justy.

 

[Calathea]

It's very unusual for antibiotics to be used as a treatment for ME. A few doctors are doing it, but they are a small minority, and I think they tend to be visited by patients who have already been ill for years. You'll probably find that the vast majority of ME patients didn't have antibiotics at all for many years after getting ill. Yes, I'm one of them - I'd say it was about twelve years before I had any antibiotics at all.

Now, if you had claimed that people who get ME tend not to rest enough initially, and that they are frequently pushed into overexerting themselves, sometimes in the form of harmful graded exercise programmes, sometimes simply because they're trying to resume their normal lives, you'd be onto something. But that is not a new idea, and it doesn't explain the cause of ME, it's more about how people get worse than they necessarily would have otherwise.

 

[Asklipia]

Maybe this forum member is just collecting material for his book! This is a place for learning anyway! And for expressing our dreams of getting better/finding a cause to all of this/ helping each other. Each one of us has his/her own style in this. The truth will come (has come?) from an unexpected place most probably. Let us hope we recognize it when we see it.
Love to all. Be well.
Asklipia

 

[justy]

If anyone has a problem with any members posts they should report those posts to the moderation team who will look into the matter. Some forum members may wish to keep this discussion going, in terms of discussing the issues raised (rather than the morality of the book)

I have noticed an unpleasant tone creeping into some posts on some threads that seems particularly aimed at newcomers, which is unnecessary and distressing. This is an open forum, for anyone to join. New members should be welcomed and encouraged, not hounded.

All the best, as usual, Justy.

 

[SOC]

I've got some really bad news for the original poster, if he really has ME/CFS. Dr Bell, who was in the center of the Lyndonville Cohort, and has about 30 years experience in treating this disease (circa 200 cases) says that many people get what they consider as better in the first five years, but then slide back into the disease. I made this crude graphic using his figures. The horizontal scale is number of years, the vertical scale indicates disease severity, higher being more severe.

Wow. That graphic fits my experience with this illness surprisingly well. I wonder if interventions (medications, pacing) contribute to this pattern or not.

 

[Sparrow]

I've got some really bad news for the original poster. Dr Bell, who was in the center of the Lyndonville Cohort, and has about 30 years experience in treating this disease (circa 200 cases) says that many people get what they consider as better in the first five years, but then slide back into the disease. I made this crude graphic using his figures. The horizontal scale is number of years, the vertical scale indicates disease severity, higher being more severe.

That's what happened to me. ...Except I've landed somewhere much worse than I was during that first period of illness. I definitely think there is truth to this for many of us.

And the first time around, I did basically nothing to get better except more rest and less activity in a general way. I didn't even know what was wrong with me.

 

[Sparrow]

Wow. That graphic fits my experience with this illness surprisingly well. I wonder if interventions (medications, pacing) contribute to this pattern or not.

I wonder if it makes any difference if people were accurately diagnosed in that first bump or not. I've always figured that if I had known better what to watch out for, I might have been able to head off my becoming so ill. Maybe not, though...

As an additional point, I feel like this would be important information to get across to primary care doctors. I think some of them probably don't bother with a diagnosis if they're not certain about it, and the patient seems to already be getting better on their own. ...But it might be a bigger factor if they knew that for many of us it's just a temporary reprieve and that knowing what was wrong might prevent us from making ourselves worse later.

 

[jace]

I totally think that's the case. My youngest (aged 25, so adult) daughter has recently been hit hard out of the blue by what could be ME. You can bet your boots I'm telling her to rest rest rest, I've helped get some social care (she has two small children), sent her a basic pack of supplements and rallied the troops to help her. I just wish I was well enough to do more. Fingers crossed and touching wood, three months in and she's a lot better.

The way we have to wait six months for diagnosis is a criminal waste of a vital window of opportunity, IMHO.

 

[Asklipia]

and that knowing what was wrong might prevent us from making ourselves worse later.

I like to think this is why people don't find a lasting cure. If you could figure out what went wrong in the first place you wouldn't let it happen again. For me it was a case of the straw breaking the camel's back. The problem was not the straw. It was a problem that pre-dated my birth.
I do not believe there is something really wrong with me now. That there is inside me something lurking that is just waiting to rear its ugly head. That some straw is going to break me.
This disease has changed my life, and how I look at my parents' life, and their parents' too. At the same time as I was coming out of this hell-hole, all memories came back of how it had happened, how I had been pushed into this by others as desperate as myself in their own way.
Today someone has written on my house as a graffiti "Biology is not Destiny". Amazing that some angry kid, most probably feeling cornered by whatever he has been fed, sends me this message of epigenetic hope!!!
I do believe that we can fix whatever went wrong. It feels like that at the moment anyway! And I have personally no proof of the contrary.
Good luck!
Asklipia

 

[xrunner]

Hi xks,
I appreciate your honesty about your intentions. As for your CFS model, I'm sorry but my personal case does not fit at all. Indeed, I had some of the issues you highlighted but resolved those tackling their root cause.

I also don't fit your hypothesis about carbs, milk and CFS. I do much better on carbs and greatly enjoy raw milk with cocoa and honey.

Your model seems to focus on symptoms and then patching up with a bunch of supplements, which is usually the norm for most CFS protocols. I have tried a few and that kind of approach has not worked a bit for me.
I have mentioned instead the things that sorted me out (free of charge).

1) Abnormal High Calcium Ion Currents In the Body as seen in Autism (Causes the Hyperactive wired but tired feeling)
Those feelings went away with courses of Ivermectin (Stromectol) and antibiotic combos including Metronidazole.

2) Abnormal Gut Flora and Gut Inflammation (Possibly High Amounts of Lactic Acid Producing Bacteria) If you look at cows fed a high grain diet with mostly lactic acid producing bacteria in them their intestines get charred(literally looks like they have been burned by the lactic acid generated from the bacteria fermenting the grains) and their intestinal villi get destroyed.
Not sure what you're talking about but Maf314 has been great for my digestion (which admittedly has never been a major issue).

3) Low DHEA, Testosterone, or Other hormones like Cortisol and Aldosterone and Pregnenolone (Any possibility of Low Hormones is Possible so you must have them all checked.For men at least I recommend 100mg of DHEA per day and 200mg per day on exercise days. Friend has done labs and 300mg a day puts him in the top lab range so the only way to tell is to test your levels after supplementation.
Please check side effects and interactions. Over time DHEA can cause heart problems. After a while it caused heart flatters and this is not rare.
A common cause of such low hormones is pituitary insufficiency. In my case have almost normalised by going after the cause of it i.e. infections, related toxins and inflammation.

4) The Brain's Reward Center is Malfunctioning from Toxin Exposure and or Depressed from Sickness. The only way yet again to fix this is with a specific nootropic substance that has all the effects of say a prescription ADHD stimulant but none of the associated side effects. This may naturally heal itself but I'm not sure without the supplement.
The only way to fix this is to remove toxins and sources.

5) Serotonin Dysfunction
Most of the above

I am writing the ebook now and 100% of it is backed by scientific studies off pubmed. This is the core of the healing, though I will not mention any specific supplements in this thread that ARE necessary to fix the problem 1,2, and 3.
Good luck.

 

[Ema]

Posts discussing the definition of fatigue in ME/CFS have been moved to their own thread located here:

http://forums.phoenixrising.me/index.php?threads/definition-of-fatigue.17693/

 

[SOC]

I wonder if it makes any difference if people were accurately diagnosed in that first bump or not. I've always figured that if I had known better what to watch out for, I might have been able to head off my becoming so ill. Maybe not, though...

As an additional point, I feel like this would be important information to get across to primary care doctors. I think some of them probably don't bother with a diagnosis if they're not certain about it, and the patient seems to already be getting better on their own. ...But it might be a bigger factor if they knew that for many of us it's just a temporary reprieve and that knowing what was wrong might prevent us from making ourselves worse later.

In my situation, I thought the steep decline came about because I kept trying to function normally (and even increase my exercise) when my doctor kept telling me there was nothing wrong with me. It wasn't until I got a correct diagnosis and went to see an ME/CFS specialist that the decline became less severe and eventually turned around.

If this graphic shows what happens to patients in general, rather than patients who had reasonable care from the beginning, then I think there's a likely possibility that our behavior could reduce the length of the drop,and maybe even start the improvement earlier. If patients who had good medical advice about pacing from the very beginning have a similar pattern, then our behavior may not be as much of a factor.

 

[Sparrow]

In my situation, I thought the steep decline came about because I kept trying to function normally (and even increase my exercise) when my doctor kept telling me there was nothing wrong with me. It wasn't until I got a correct diagnosis and went to see an ME/CFS specialist that the decline became less severe and eventually turned around.

If this graphic shows what happens to patients in general, rather than patients who had reasonable care from the beginning, then I think there's a likely possibility that our behavior could reduce the length of the drop,and maybe even start the improvement earlier. If patients who had good medical advice about pacing from the very beginning have a similar pattern, then our behavior may not be as much of a factor.

I think so too. Like you, I was trying to keep going normally as long as I possibly could, when in retrospect my body was screaming at me to stop. I also increased exercise once I became too ill to work, because my doctor thought that would help. I feel like this is a key point...That if doctors were willing to diagnose sooner, people would be saved from pushing past those warning signs. I truly don't think they realize what a difference it might make. When my body finally gave out under my efforts to push it and I became bed bound for the long term, my doctor finally told me she had been "thinking all along that it might be CFS". Thanks for the heads up.

 

[Sushi]

I think so too. Like you, I was trying to keep going normally as long as I possibly could, when in retrospect my body was screaming at me to stop. I also increased exercise once I became too ill to work, because my doctor thought that would help. I feel like this is a key point...That if doctors were willing to diagnose sooner, people would be saved from pushing past those warning signs. I truly don't think they realize what a difference it might make. When my body finally gave out under my efforts to push it and I became bed bound for the long term, my doctor finally told me she had been "thinking all along that it might be CFS". Thanks for the heads up.

Ditto! It was pushing that finally sent me over the edge.

Sushi

 

[dannybex]

I think so too. Like you, I was trying to keep going normally as long as I possibly could, when in retrospect my body was screaming at me to stop.

Me three.

I also increased exercise once I became too ill to work, because my doctor thought that would help. I feel like this is a key point...That if doctors were willing to diagnose sooner, people would be saved from pushing past those warning signs. I truly don't think they realize what a difference it might make. When my body finally gave out under my efforts to push it and I became bed bound for the long term, my doctor finally told me she had been "thinking all along that it might be CFS". Thanks for the heads up.

Good points Sparrow, but I think it's human nature, or perhaps a cultural thing, to try to keep going, get back to work, be part of the 'real' world, etc.. A doctor can make a diagnosis, but it's still up to us patients to listen to our bodies and stop pushing, stop overdoing it. A doctor can't do that for us.

After 14 years of illness, and nearly becoming bedridden during the last 6-9 months, I still struggle to listen to and respect my body, and stop pushing myself. In fact, I'm overdoing it right now...should've been off the computer 2 hours ago...so will shut up, post this, and turn it off.