Cured their ME/CFS, and went on to live their lives (35 Stories)

[Shen]

Carboplatin and paclitaxel chenotherapy drugs triggered my ME/CFS. I realize this is not typical, but I ended up with typical ME/CFS. What pill effectively treats this? I spent 9 months chelating platinum, but my mitos still seem to be damaged, my microbiome still suffers, I still have immunodeficiciency, and got 2 kinds of autoimmunity on top of it. And my endocrine system doesn't work properly and I have a lot of oxidative stress. All of this was made worse by genetic iron overload, which caused Fenton reactions and hydroxyl radicals and caused further damage. And a genetic tendency to low BH4 which causes peroxynitrite damage to mitochondria.

Exactly what root cause needs fixing? And if that's fixed, all of this will go away? From what I've seen, others may not have had my environmental or genetic factors, but they have their own unique constellation of factors. We are not generic widgets. We share clinical symptoms, but each of us is unique. Unfortunately.

Have you seen the case of Mikhaila peterson?

Lyme disease. C DIFF Disease. Rheumatoid arthritis since 2 (severe) . Severe depression at 11 (multiple antidepressants). Two surgeries by 17. By 19 Chronic Fatigue. MCAS like disease (wasn't diagnosed). She took over 20 medications to function semi regularly.

She changed her diet to a pure carnivore diet. Only fresh beef and salt. She entered in remission of every disease she had sfter months. Without pills.

Clearly she found his problem. Terrible autoinmune problems from the diet. After she took the problematic foods, she didn't heal right away. Took her months. But after 5 to 6. She went in complete remission and she is now healthier than most "healthy" people.

I Want to show you with that example. That once you take out the problem that maintains the disease. The body does recover. The body is extremely resilient. But it needs to be in a place where it can start to fix itself. Clearly somethings stops most of us to start that recovery process

IIm sure once you take the root problem from ME. It can take months to go back to normal. But im 100% sure you will.

 

[JES]

Have you seen the case of Mikhaila peterson?

Mikhaila's story is very interesting, but she made a lot of strange claims over the year and the recent news is that her famous father spent the last months locked in a hospital, so clearly the same diet didn't solve his problems. I trialed a ketogenic diet a couple of times over the recent years and got so weak I could barely get out of bed (normally I'm not bed bound), but yeah, some members here have reported benefits of it. Carnivore (or the beef only version that Mikhaila follows) is an even more extreme diet that I personally wouldn't be keen on staying for a lifetime. Not for the lack of food variety, but due to possible unforeseen long-term health effects.

This sounds about on par with the possibility of curing cancer w/ a single pill. Very unlikely that we'll see anything like this any time soon.

How would a single pill fix this in just hours?
Solve ME/CFS Initiative
View attachment 39071

If the pill would get rid of the underlying infection, it could possibly be a single pill cure though, provided the hypothesis that it's infection(s) that are the root cause. I do believe that if we eliminate/fix one factor, that body has the ability to jump-start or shut down other downstream metabolic disturbances. Even healthy people can have a great deal of damaging genetic mutations and all sorts of chronic infections, all which they are unaware about since they don't feel sick.

Much like with COVID-19, it seems to take multiple things going wrong for you to get severely ill. But maybe it's then also enough to remove one offending factor to gain back most of health. Speaking of health, there is no such thing as 100%, so maybe the word "cure" isn't the best one in this context. I remember having some symptoms of ANS dysfunction when I was a teenager long before I was sick in any meaningful sense, so it would practically be a cure to regain that functionality for myself even with lingering ANS symptoms.

 

[Learner1]

She changed her diet to a pure carnivore diet. Only fresh beef and salt. She entered in remission of every disease she had sfter months. Without pills.

Clearly she found his problem. Terrible autoinmune problems from the diet. After she took the problematic foods, she didn't heal right away. Took her months. But after 5 to 6. She went in complete remission and she is now healthier than most "healthy" people.

I Want to show you with that example

Thank you for thinking to share this. I've definitely tried changing my diet to be anti-autoimmune, anti-inflammatory, Paleo, Keto, low Oxalate, and removing allergens, but none has cured me. As for carnivore diets, they can be downright dangerous, especially if one has increased need for folate or antioxidants, or us using minerals, which many of us do:

https://selfhacked.com/blog/carnivore-diet/

If the pill would get rid of the underlying infection, it could possibly be a single pill cure though,

I was on Valcyte for 20 months, which was greatly helpful in beating back EBV and HHV6, but it didn't cure me. These viruses can trigger autoimmunity and cause mitochondrial fragmentation, which have other downstream effects.

Much like with COVID-19, it seems to take multiple things going wrong for you to get severely ill. But maybe it's then also enough to remove one offending factor to gain back most of health

Agreed that it may take multiple things to become severely ill. But, most of us have tried removing many offendung factors without a cure. As the IOM report said, this is a complex, multi-organ system disease. It's going to take a symphony to fix it any time soon.

Or maybe we should wait for that Star Trek tricorder, the device the doctor waives at the patient to right what's wrong...

 

[Learner1]

This isn't always the case though. If EBV causes Hashimoto and hypothyroidism, and you happen to clear the virus, you can cease the autoimmune attack. Then the thyroid can regenerate if it's not too late. And you can help clear out TPO antibodies w/ Selenium and other things. It's a lot of "IFs"... but autoimmune recoveries like this are possible, there's plenty of documentation on this type of scenario online.

I believe Hashimotos is T cell mediated autoimmunity, not B cell autoimmunity, which is what many of us have, with all kinds of weird antibodies causing all kinds of symptoms.

Hashimoto's can be reversed by going on a gluten free diet due yo molecular mimicry.

The B cell anti-phospholipid, GAD65, anti-NMDA, cholinergic, muscarinic, adrenergic, etc. antibodies triggered by EBV and other viruses are much more difficult to get rid of. The lucky patients who are able to access Rituximab and have it work can experience remission or possibly a cure. The odds of this success are very slim. Otherwise, it's just symptom management.

I think there are many factors involved regarding whether this type of autoimmune reversal is possible. Like, how much damage has been done, etc.

Yes, autoimmunity causes damage, done if which may be reversible, but a lot is irreversible. Ask people with RA how much is reversible...

However unlikely, it is possible to beat back the virus and reverse autoimmune process, at least in certain types of autoimmune conditions, and in certain individuals.

It is both unlikely and possible.

For instance, if you don't happen to have nutrient deficiencies, food allergies or sensitivities, chronic stress, poor diet, etc etc, you might be a more likely candidate for potential viral-induced autoimmune recovery.

Most if us have at least one of those factors, many with a disturbed microbiome and gut and blood brain barrier.

Sounds like CFS should be renamed chronic fatigue spectrum.

Navioux has commented recently on his website that there probably are 50 different ways we can end up with a cell danger response. And that he believes could cause CFS. 50 causes sounds like a spectrum to me.

It is indeed. Multiple researchers have found subsets of patients.

So why is candida getting there continually? I've blogged on this a bit here, including my theory of how a specific mycotoxin produced by Candida could explain why this works for myself and some other PWC.

Oxalates can promote chronic candida, have you looked into them? A Viome or Great Plains OAT test would tell you if they are an issue.

 

[Learner1]

I'm convinced that for most of us it's a dysbiotic microbiome and a leaky gut. As you know though, the microbiome is often extremely difficult to re-balance once it's become far enough out of balance.

We've had this discussion. it is not the root of the problem for everyone.

as I have mentioned, my gut was in a great shape when I was at my sickest, and my microbiome has been disturbed through treatment as I've gotten better, unfortunately. It is definitely something I work on, because I do believe it's important for overall health, but it was by no means the root of my case, nor for many others.

ME/CFS researcher Mady Hornig has a video out explaining how the different bacterial makeups of those of us with IBS and those of us without it, causes different cytokine profiles from different bacteria in the gut, stimulating different immune cells. This causes different cytokine profiles in patients.

She also makes the connection of this immune system stimulation causing mitochondrial dysfunction, affecting the vagus nerve and affecting the brain, as well other affects it has on the body. Together causing ME/CFS.

I'm not trying to convince anybody of anything. I can't. This is just my opinion, based on my experience.

And, it's a valid experience. Dr. Hornig's work provides important clues, but it is not the only explanation for this disease.

What about Dr. Prusty's findings on smoldering herpes family viruses and Mitochondrial fragmentation? What about CCI? What about adrenergic and muscarinic antibodies causing POTS? What about Lyme? What about mast cell activation, which can have a genetic component? What about the findings of impaired glycolysis or impaired complex V?

 

[ljimbo423]

We've had this discussion.

You are right, we have had this discussion before, several times. I can appreciate the time and effort you have put into your understanding of ME/CFS and you are entitled to your opinion.

My opinion stands.

One of the things I'm learning as I get older is, I can't change anybody's mind (EDIT- except my own!)

 

[Wishful]

What about Dr. Prusty's findings on smoldering herpes family viruses and Mitochondrial fragmentation? What about CCI? What about adrenergic and muscarinic antibodies causing POTS? What about Lyme? What about mast cell activation, which can have a genetic component? What about the findings of impaired glycolysis or impaired complex V?

Well, maybe these are problems that are exacerbated by ME, or ME exacerbates them. I don't think any of the research findings on those issues link them and ME directly. I haven't read much about CCI and ME, but I'm guessing that most PWME who have benefited from surgery didn't get fully cured of ME, which indicates that it's a comorbid condition that exacerbates ME, rather than a part of ME. A PWME might have more severe ME if they didn't also have a Lyme infection, but eradicating the infection probably wouldn't eliminate their ME. Impaired glycosis or complex V might be a downstream effect of ME in some victims (but maybe not all). We can't answer your 'what about's until we find what ME really is.

 

[Wishful]

Ok. So, say I have an HHV-6 infection and it's causing mitochondria fragmentation. How would this fit in?

If the hypothalamus--or some other biomechanism--was malfunctioning, the changes in hormone levels might affect immune system function in ways that allow an infection to be more of a problem than it otherwise would, including mitochondrial function. Likewise, the hormones could affect mitochondrial function directly or indirectly, making them more vulnerable to viral infection. If so, then getting the hormones back in balance could restore normal function of the immune system and mitochondria, and the virus is defeated or goes back into hiding, or maybe stays as some sort of smouldering infection that doesn't cause noticeable symptoms.

The body is really complex. If one part, even a tiny part, is malfunctioning, it's quite reasonable to expect other parts of the body to malfunction too.

 

[ljimbo423]

What types of testing did you do for bacterial analysis? What were the main findings, like abnormal levels of which bacteria?

A CDSA. It shows the level of general dysbiosis on a scale from 0 to 20. 20 being the worst dysbiosis the test can measure. Mine was an 18, = severe! It doesn't show specific bacteria.

Have you tested for enterovirus?

No.

Have you tested for streptococcus (ASO test)?

No.

Have you tested for acidosis, specifically D-Lactic Acidosis?

No.

What tests did you do to confirm leaky gut (urine Lactulose & Mannitol)?

No testing, just observation based on 13 years of research and my symptoms.

 

[sometexan84]

If the pill would get rid of the underlying infection, it could possibly be a single pill cure though, provided the hypothesis that it's infection(s) that are the root cause.

Absolutely. There are complete recovery stories where a mild case got back to 100% on Valtrex because that was their only issue.

Though I think many have 2 infections feeding off one another. Or more than 2. And I think it's important to treat them both simultaneously. Hence all the "partial recoveries" and relapses happening all the time w/ CFS.

I do believe that if we eliminate/fix one factor, that body has the ability to jump-start or shut down other downstream metabolic disturbances.

I think that's true a lot of the time. But again, I think oftentimes people need simultaneous treatment to ensure certain factors are fixed permanently.

Much like with COVID-19

btw, CFS from COVID... I believe this is EBV reactivation. Just sayin

I believe Hashimotos is T cell mediated autoimmunity, not B cell autoimmunity, which is what many of us have, with all kinds of weird antibodies causing all kinds of symptoms.

You could say T cell mediated, or B-cell/antibody mediated. Could be either. They're different types of Hashimoto. Although I guess EBV infected B cells in thyroid (antibody mediated) could technically be referred to as T cell mediated as well.

CD8+ T-cell deficiency from psychological stress and enterovirus infection allow EBV-infected B cells to infect thyroid. These infected B cells in the thyroid are now corrupted and now they attack your own tissue, by secreting thyroid auto antibodies like TPO (as well as thyrotropin receptor antibodies, TRAbs).

When EBV infects B cells it can make them “auto-reactive”, which means its products (antibodies) target our own tissues

​

Hashimoto's can be reversed by going on a gluten free diet due yo molecular mimicry.

Still glad I didn't do it that way. That diet sux!

Otherwise, it's just symptom management.

Luckily, that wasn't the case for me.

Ask people with RA how much is reversible...

I'm confident that if I had let my condition go untreated, then it would have been just a matter of years before I'd get RA. Among other things.

You are right, we have had this discussion before, several times. I can appreciate the time and effort you have put into your understanding of ME/CFS and you are entitled to your opinion.

If I hadn't commented on this already... I do agree that more than 1/2 of us have gut dysbiosis, microbiome, intestinal permeability, and/or gut brain axis issues.

One of the things I'm learning as I get older is, I can't change anybody's mind

Not with that attitude!

It is definitely something I work on, because I do believe it's important for overall health, but it was by no means the root of my case, nor for many others.

How do you know this wasn't the root cause of many others?

Especially w/ all the recent studies that have been done showing HUGE connections between the gut and ME/CFS. I could totally see plenty of others where this was more or less the "root cause" of symptoms.

If the hypothalamus--or some other biomechanism--was malfunctioning, the changes in hormone levels might affect immune system function in ways that allow an infection to be more of a problem than it otherwise would, including mitochondrial function. Likewise, the hormones could affect mitochondrial function directly or indirectly, making them more vulnerable to viral infection. If so, then getting the hormones back in balance could restore normal function of the immune system and mitochondria, and the virus is defeated or goes back into hiding, or maybe stays as some sort of smouldering infection that doesn't cause noticeable symptoms.

I take it you are closely following the Metabolic Trap hypothesis and studies and trials?

Mine was an 18, = severe!

Hm, I wonder what's going on in there. I had Streptococcus and enterovirus. I still haven't done more specific microbiome testing to look for other bacteria though.

 

[Wishful]

I take it you are closely following the Metabolic Trap hypothesis and studies and trials?

Nope. What I'd read about it didn't convince me that it was the right trail. I believe that my issues with TRP involve improper levels of some kynurenines. I also believe that the core dysfunction of at least my ME is located in my brain, and probably in some small but critical portion of it, such as the hypothalamus, but could also be something else, such as the layer of astrocytes lining the fluid channels. Microglial cells are also high on my suspicion list. Nothing yet for a solid theory.

 

[Abrin]

"nor for many others"...
Here we go again...
How do you know this wasn't the root cause of many others? Saying definitive things like that when there is literally no way for you to know. It's just ... ugh

Especially w/ all the recent studies that have been done showing HUGE connections between the gut and ME/CFS. I could totally see plenty of others where this was more or less the "root cause" of symptoms.

I know no one asked me, but....

Saying 'nor for many others' is not a definitive thing. 'Many others' simply defines a subset.

In my humble opinion, if there is any thing that I've learned through all my years of having ME/CFS and talking to people with ME/CFS is even though people seem to share the same common symptom set there seems to be huge amount of different subsets in all the little ways people react to things.

 

[sometexan84]

I know no one asked me, but....

Saying 'nor for many others' is not a definitive thing. 'Many others' simply defines a subset.

He was saying that it's not the root cause for him, and that it's not the root cause for many others.

 

[Learner1]

He was saying that it's not the root cause for him, and that it's not the root cause for many others.

I'd appreciate your not translating my words in answer to others

And, yes, having heard hundreds of people's timelines and seen their labs, it is clear that the microbiome is not the root of everyone's problems, though I certainly believe it definitely is for some.

For me, my gut was in great shape when I was at my sickest, and after both oral and IV antibiotics, even though they greatly helped my infections and overall function, they damaged my microbiome. That's how I know - I've done multiple stool tests over the past 5 years. And carboplatin, paclitaxel, and a significant auto accident immediately preceded my ME/CFS, so the root is more likely there, before causing immunodeficiency, autoimmunity, and rekindling of multiple chronic infections.

As for autoimmunity, though many of us have Hashimoto's, my point was that manyof us have far worse forms of autoimmunity that have very different mechanisms than Hashimotos, and are much more difficult to reverse, if they can be at all. These can cause irreversible tissue damage and a cascade of symptoms.

 

[Learner1]

the changes in hormone levels might affect immune system function in ways that allow an infection to be more of a problem than it otherwise would, including mitochondrial function. Likewise, the hormones could affect mitochondrial function directly or indirectly, making them more vulnerable to viral infection. If so, then getting the hormones back in balance could restore normal function of the immune system and mitochondria, and the virus is defeated or goes back into hiding, or maybe stays as some sort of smouldering infection that doesn't cause noticeable symptoms.

Unfortunately, I've tried this, and it was not successful. The very first thing my doctors did was balance all my hormones, to get them all to optimal levels. My body just sucked up hormones and I functioned a little better, but it did nothing for my immune system, my infections, my Mitochondria, or the severe oxidative and nitrosative stress that was going on.

I've also done a lot of work to support my immune system and treat infections. This did not fix my mitochondria. I've also worked a lot to repair my mitochondria, feeding them mito nutrients and encouraging them to recycle into healthier ones and to increase the overall number if mitochondria. This did not fix my immune system.

And, due to the car accident, I had turn my rotator cuff, hurt my back and hips and have permanent damage in my neck. I did prolozone, massage, cranial sacral therapy, and extensive physical therapy while I was very ill for 2 years, and was able to get full function back and do not have a need for surgery or any pinched nerves, but this didn't cure me.

I also worked in fixing my microbiome.

All of these things provided incremental improvement, but at no point did things begin to fix themselves automatically after putting the other pieces in place.

I'm not sorry I've done any of this, just wish it weren't so involved and costly, but it's made me realize just how complex this disease is, and make me extremely doubtful that there's any easy fix. I do believe a lot of patients could be much better than they are, with appropriate testing and comprehensive treatment, but I do understand how difficult and challenging this is.

 

[Shen]

Mikhaila's story is very interesting, but she made a lot of strange claims over the year and the recent news is that her famous father spent the last months locked in a hospital, so clearly the same diet didn't solve his problems. I trialed a ketogenic diet a couple of times over the recent years and got so weak I could barely get out of bed (normally I'm not bed bound), but yeah, some members here have reported benefits of it. Carnivore (or the beef only version that Mikhaila follows) is an even more extreme diet that I personally wouldn't be keen on staying for a lifetime. Not for the lack of food variety, but due to possible unforeseen long-term health effects.

Jordan did also tried her diet and also went ob remission from depression, GERD and strong fatigue. He also lost weight and his brain fog lifted.

Jordan had a terrible stress induced experience with his wife been diagnosed cancer. So he took klonopin to ease jis anxiety. That's what got him into trouble. He experimented terrible withdrawal effects after klonopin and that's why he was sended to a hospital.

 

[ljimbo423]

And carboplatin, paclitaxel, and a significant auto accident immediately preceded my ME/CFS, so the root is more likely there, before causing immunodeficiency, autoimmunity, and rekindling of multiple chronic infections.

May I offer the "possibility" that the carboplatin, paclitaxel and stress from the car accident altered your gut microbiome, caused significant dysbiosis, leaky gut and your ME/CFS?

There is also a lot of research that connects dysbiosis and leaky gut to triggering autoimmunity through molecular mimicry. Do you see these ideas as at all possible?

Scientists at Ohio State University have uncovered a correlation between treatment using the chemotherapy agent paclitaxel, and changes to the gut microbiome, inflammation, and symptoms of fatigue and cognitive impairment.

The research, in mice, is the first to demonstrate these combined events in the context of chemotherapy, and suggests that regulating gut bacteria may represent a new approach to diminishing some of the side effects of chemotherapy such as nausea and diarrhea, and also potentially reducing some of the memory and concentration problems reported by patients receiving treatment.


“This is the first time anyone has even looked to see if there’s a link between the gut symptoms and the brain symptoms associated with chemotherapy,” said Leah Pyter, PhD, assistant professor of psychiatry and behavioral health, and an investigator in the Institute for Behavioral Medicine Research at Ohio State.

“There have been studies in humans indicating that chemo alters microbes in the gut, and our study in mice had similar results. We were able to see that there are brain changes at the same time as the gut changes.

We also looked at inflammation, and yes, there are all these changes happening at the same time. So there are correlations, and now we’re looking into causality.” Pyter is senior author of the team’s published paper in Scientific Reports, which is titled, “Chemotherapy-induced neuroinflammation is associated with disrupted colonic and bacterial homeostasis in female mice.”

Reference

 

[Learner1]

May I offer the "possibility" that the carboplatin, paclitaxel and stress from the car accident altered your gut microbiome, caused significant dysbiosis, leaky gut and your ME/CFS?

There is also a lot of research that connects dysbiosis and leaky gut to triggering autoimmunity through molecular mimicry. Do you see these ideas as at all possible?

Reference

Agreed. However, aware of this, I did a pretty decent job of rebuilding my gut afterward, and 18 months out, my knowledgeable doctor pronounced my stool test is one of the best he'd ever seen. More concerning was the hit to my mitochondria, the target of those drugs.

 

[Learner1]

Jordan did also tried her diet and also went ob remission from depression, GERD and strong fatigue. He also lost weight and his brain fog lifted.

Jordan had a terrible stress induced experience with his wife been diagnosed cancer. So he took klonopin to ease jis anxiety. That's what got him into trouble. He experimented terrible withdrawal effects after klonopin and that's why he was sended to a hospital.

This does not sound at all like ME/CFS. But, glad Jordan feels better.

 

[Mumbo_Jumbo]

I have improved my ME/CFS from severe and mostly bedridden for 6-8 years to fairly mild most of the time. Almost never take naps unless I don't get 7-7.5 hours of sleep. I sleep 8 hours a night and do 6-7 hours a day of physical activity. And haven't spent a day in bed in a looooong time from ME/CFS.

So a direct answer to your question is, a lot better than I use too!



Yes.



Treating severe bacterial dysbiosis found through testing and leaky gut.



Just how I feel.

EDIT- Just to give a little context. I'm 60 years old and have had ME/CFS for 42 years, since I was 18 and have been disabled with it for 31 years. Since 1989.

Hi Jim,

As someone who is heading down a similar path myself, may I ask what you treatments are/were that led to your improvement?