'Flu, colds, chemotherapy 'cure' my ME symptoms temporarily

[Sonja J]

I have had viral infection induced ME/CFS since 2012. In 2013 I was diagnosed with breast cancer and started aggressive chemotherapy. Following recovery I had almost the same levels of energy as I had before the ME. After three or so years, my energy declined and PEM, unrestful sleep set in again, until I was house bound for months in 2017. I received the ME/CFS diagnosis in 2018. I was aware that I had had no colds or influenza since the bad virus in 2012 but had put it down to the chemo. However, that continued, and I first noticed in 2020 that while my family all had a bad cold, I was feeling almost 'normal'. This was also the case when I had the first Covid vaccine. For about five days I felt pre-ME normal. Last month, all the family had a very bad case of 'flu - I felt great! I was energetic and had no PEM at all. It's amazing, and yet, incredibly frustrating.
I am desperate to find others who have experienced this. I hear anecdotally that you are out there. I am looking for information and a way to treat my disease which modulates my immune system effectively, however here in Calgary I have not found a doctor that will consider any treatments. I am convinced I have an overactive immune system causing my symptoms, and there is current research to show that is often the case, however doctors will not even consider any form of immunosuppression to help me - somewhat understandably - but has anyone with a similar story had any successful treatments?

 

[andyguitar]

In 2013 I was diagnosed with breast cancer and started aggressive chemotherapy. Following recovery I had almost the same levels of energy as I had before the ME.

Can you remember the names of the drugs you were given? Might provide a clue as to how they resolved your ME symptoms.

 

[hapl808]

I am desperate to find others who have experienced this. I hear anecdotally that you are out there. I am looking for information and a way to treat my disease which modulates my immune system effectively, however here in Calgary I have not found a doctor that will consider any treatments. I am convinced I have an overactive immune system causing my symptoms, and there is current research to show that is often the case, however doctors will not even consider any form of immunosuppression to help me - somewhat understandably - but has anyone with a similar story had any successful treatments?

I have felt the same sometimes. Back when I was more moderate - I'd get sick (not PEM) and have all the symptoms of a cold, but feel much less MECFS symptoms. Never was able to figure out why, unfortunately.

Now I'm more severe and nothing really moves the needle. Wish I had more to say.

 

[dr. Arf]

2013 I was diagnosed with breast cancer and started aggressive chemotherapy. Following recovery I had almost the same levels of energy as I had before the ME.

There is a lot of anecdotes of patients improving after chemotherapy.

Would be indeed curious to know the exact chemotherapy protocol, because there might be some hints / interesting information there.

- how severe were you before chemotherapy?
– versus the level you got to after chemotherapy?
(steps/day, bed / house / couch bound, what activities, work, how,long could you talk?)

However, that continued, and I first noticed in 2020 that while my family all had a bad cold, I was feeling almost 'normal

There are a lot of patients that feel better during (asymptomatic) infections.
- you can go through different threads

this one on catching a cold/flu might be interesting
https://forums.phoenixrising.me/thr...he-cold-or-flu-more-or-less-frequently.13228/

 

[Wishful]

Back when I thought I had some rare neuroimmunological disorder, I managed to convince my GP to prescribe cyclosporin: a serious immunosuppressant. It had no effect. Later I realized that it didn't cross the BBB, so if it was immune-related, the problem was inside the BBB.

Prednisone did give me full remission, but only while on it, and only for the first two tries, then it stopped having an effect. So, there's no guarantee that any immune modulator--or even getting infections--will work more than once or twice. There's no guarantee that such treatments won't keep working either.

 

[kushami]

@Sonja J , people have experimented with immunosuppressants on their own by purchasing medications online from prescription-free pharmacies. I don’t think this is possible in Canada, though, as you are not allowed to have any medications posted to you from another country. (You can carry medications back from overseas in some cases, but that’s not really much help.)

Unfortunately, there doesn’t seem to have been much research on using basic, lower-cost, lower-risk immunosuppressants to treat ME/CFS – the kind of things you might be able to persuade an immunologist or rheumatologist to try you on.

Have you tried asking on a local Facebook patient group? Someone might message be able to message you with info – people sometimes don’t make public posts if their doctor is a bit experimental as they don’t want them to get into trouble.

 

[Sonja J]

I have felt the same sometimes. Back when I was more moderate - I'd get sick (not PEM) and have all the symptoms of a cold, but feel much less MECFS symptoms. Never was able to figure out why, unfortunately.

Now I'm more severe and nothing really moves the needle. Wish I had more to say.

Thanks, and very sorry your illness has worsened. I have basically no symptoms except a mildly runny nose or slightly enlarged lymph nodes when others are sick. But the ME symptoms are gone for the duration.

 

[Sonja J]

Back when I thought I had some rare neuroimmunological disorder, I managed to convince my GP to prescribe cyclosporin: a serious immunosuppressant. It had no effect. Later I realized that it didn't cross the BBB, so if it was immune-related, the problem was inside the BBB.

Prednisone did give me full remission, but only while on it, and only for the first two tries, then it stopped having an effect. So, there's no guarantee that any immune modulator--or even getting infections--will work more than once or twice. There's no guarantee that such treatments won't keep working either.

That's interesting. I don't think my GP would prescribe anything at this point but she is willing to refer me, IF I can find a specialist to look into it.

 

[Sonja J]

I don't remember the exact chemo drugs I was given but they were standard for the time and pretty toxic. However I don't believe that it's entirely relevant because what's happening is that I am in a constant state of some sort of heightened, artificial?, immune response, and anything to suppress it seems to eliminate the ME symptoms. Following the chemo I was back to pre-ME normal, back to riding my bike in the Rockies, hiking, working etc. The PEM, aches, unrestful sleep gradually returned after about three years. I am now moderate, mainly because I have a handle on pacing and a drastically changed lifestyle.
My GP won't refer me to an immunologist because she says there is nothing to warrant it. My routine blood tests are normal. I did see a hematologist a few years ago because my neutrophil count was elevated intermittently for no apparent reason. I was told it was an anomaly and didn't need further investigation!
I feel like the only option is to go to the States and see someone there. And maybe try getting some medications overseas as suggested.

 

[Sonja J]

Can you remember the names of the drugs you were given? Might provide a clue as to how they resolved your ME symptoms.

I don't remember but they completely destroyed my immune system. They didn't even give neutrophil injections then so I ended up hospitalized with C.Diff twice while undergoing treatment. Between the original virus in 2012 and the cancer diagnosis I had mild ME symptoms, and also didn't catch colds. The ME symptoms were much worse late 2017, after chemo.

 

[Florida Guy]

I had chemo in 2020, It gave me some ME symptoms like brain fog, poor memory, and poor balance. One drug I was given was called carboplatin, it has platinum in it.

 

[kushami]

I imagine an immunologist might be able to look at what chemotherapy drugs, a cold and an immunisation have in common and come up with a hypothesis to test. As a layperson, it does seem as though they work in different ways, with the chemotherapy suppressing the immune system and the cold and the immunisation “keeping it busy”, but knowing the human body it is bound to be more complicated than that.

Perhaps one of our members who is good at posing questions to AI chatbots could have a stab at it?

(I’m not suggesting that anyone could go to an immunology appointment and get that level of help, unless you happened to luck onto a very dedicated and conscientious doctor who had the time to do this for an individual case.)

 

[kushami]

@Sonja J , I think you could still get your records from when you had chemotherapy.

Your GP would have letters from the hospital, or you could get your actual hospital records. If Canada is similar to Australia, there will be an administration fee and some form filling.

(Not saying you have to do this, just that it’s an option.)

 

[kushami]

@Sonja J , sorry for all the comments, but have you tried low-dose naltrexone (LDN)? It is not exactly easy to access, but is getting easier.

My (private) rheumatologist here in Australia agreed to my trying it as soon as I asked about it. I was surprised that it was so easy. He said he tries it with his fibromyalgia patients with occasional postive results, and that it is low risk, and he was happy to let me try it.

 

[dr. Arf]

I don't remember the exact chemo drugs I was given but they were standard for the time and pretty toxic.

@Sonja J : the reason it is interesting, is that Norwegian researchers have been doing trials with different chemo drugs.

The reason these oncologist started the research is that they saw quite a lot of similar improvement (or remission/recovery) ME CFS cases happening after chemotherapy (Like yours)
- this is also something I have read anecdotally from other patients

One of the drugs was Cyclophosphamide. A very common drug for aggressive breast cancer treatment. Cyclo also a drug I have read anecdotal improvement or remissionfrom other patients
- Researchers did a N=42 trial with quite good results (specially compared to other ME CFS drug trials)
- it’s a drug that depletes your immune system - just like in your case / experience
- currently they’re trialing Daratumumab (unlikely you got that and not such a heavy duty drug)


See for more backgrounds in Thread 'Cyclophosphamide six year followup data '
https://forums.phoenixrising.me/thr...arch-about-cancer-and-infertility-risk.92249/

 

[dr. Arf]

I feel like the only option is to go to the States and see someone there. And maybe try getting some medications overseas as suggested.

PS : yes you have to do your own research and there are supplements and some drugs you can do on your own (if no, Doctor is willing to help which is very common)

This forum is full of it. E.g LDN etc

 

[hapl808]

Perhaps one of our members who is good at posing questions to AI chatbots could have a stab at it?

Just a very rough question posed to AI:

The counter-intuitive remission-like effects observed in ME/CFS patients following certain chemotherapy drugs, vaccines, and illnesses could be explained by a common thread involving modulation of the immune system and/or cellular metabolism, specifically through:

1. Immune System Reset/Suppression:
   • Pathway: Many chemotherapies, some vaccines (especially live attenuated), and certain viral/bacterial infections can temporarily suppress or significantly alter the immune system, including reducing the activity of specific immune cells (e.g., T cells, B cells, NK cells) or altering cytokine profiles.
   • Mechanism in ME/CFS: If ME/CFS involves a chronic, dysregulated immune response (e.g., persistent inflammation, autoimmunity, or a failure to resolve a past infection), this temporary suppression might interrupt the pathological cycle, leading to a transient reduction in symptoms.
2. Targeting Latent Viral Reactivation:
   • Pathway: Some chemotherapy agents (e.g., those targeting DNA synthesis) and some illnesses (especially those that induce strong antiviral responses) might inhibit the reactivation or replication of latent viruses (e.g., Epstein-Barr virus, HHV-6) that have been implicated in ME/CFS pathogenesis.
   • Mechanism in ME/CFS: If persistent viral reactivation is contributing to immune dysfunction and symptoms in ME/CFS, reducing viral load or activity could lead to temporary improvement.
3. Metabolic Shift/Mitochondrial Modulation:
   • Pathway: Certain chemotherapies and intense immune responses triggered by vaccines or infections can profoundly affect cellular metabolism, including mitochondrial function. This can involve a shift towards alternative energy pathways or an increase in mitochondrial biogenesis.
   • Mechanism in ME/CFS: If ME/CFS involves mitochondrial dysfunction and impaired energy production, a temporary metabolic shift or enhancement of mitochondrial function might provide a "boost," leading to a reduction in fatigue and other symptoms.
4. Microbiome Alteration:
   • Pathway: Certain infections, as well as chemotherapeutic agents, can impact the gut microbiome composition.
   • Mechanism in ME/CFS: Given the emerging role of the gut-brain axis and microbiome in ME/CFS, significant alterations to the microbiome might influence inflammation, immune responses, and neurotransmitter production, potentially leading to symptom changes.

In essence, the shared thread is a powerful "shock" to the system, whether immunological, viral, metabolic, or microbial, that temporarily disrupts the presumed underlying pathological mechanisms in ME/CFS, leading to a transient period of symptom improvement. Further research into these specific pathways and the shared mechanisms is crucial for developing more targeted and sustained therapies for ME/CFS.

 

[Wishful]

ME seems to respond to transient inputs (abrupt rise in cytokines, abrupt drop in cytokines, etc), but something keeps pushing us back into the ME state. My conclusion is a homeostatic feedback loop. Whether it's an evolved mechanism with a beneficial purpose, or an evolved mechanism that's beneficial for some other organism, or just a simple malfunction, is still a question.

 

[dankeen]

If you look at my post history I wrote alot about cyclophosphamide chemo treatment for ME including my own unsuccessful experiment and my friend’s very successful experiment.

The researchers who conducted the cyclophosphamide study were quoted as saying that they know of 15 ME patients who improved following cyclophosphamide

It would be a big service to the community if you could request your medical records to confirm which chemo drugs you were given.

A more detailed timeline would also be really useful to us. What month 2012 did you develop ME? What month 2013 did you start chemo. How fast was your recovery after chemo?

With regards to feeling better after vaccines or viruse, some people have replicated this using the bcg vaccine. You will find the thread if you do a search.

 

[cfs since 1998]

I wonder if anyone who benefits from infections or vaccines would benefit from Copaxone.

Copaxone is used in MS to act as a decoy to distract the immune system from attacking myelin.