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

[andyguitar]

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.

All those things lead to a rise in Nitric Oxide, a vasodilator. As there seems to be a problem with the circulatory system in me/cfs perhaps this is the common thread.

 

[Seadragon]

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.

I think a former member tried this but it didn't help him. He doesn't come here anymore I don't think as I just tried to tag him and his name didn't come up. His name was Martin and he was from Germany, very severe case.

 

[Seadragon]

Just a very rough question posed to AI:

@hapl808 Really interesting explanation. Do you or does anyone know if this phenomenon happens in any other illnesses i.e. feeling better or a reduction in symptoms with a virus etc?

 

[dave11]

@hapl808 Really interesting explanation. Do you or does anyone know if this phenomenon happens in any other illnesses i.e. feeling better or a reduction in symptoms with a virus etc?

A viral infection can alleviate the symptoms of hypoglycemia - low blood sugar. The infection raises stress hormones, particularly cortisol, and that in turn increases blood sugar levels. Source: Google AI.

Low cortisol levels are sometimes associated with symptoms of ME/CFS.

Low cortisol levels can potentially lead to an overactive immune system.

It seems to me, to my way of thinking, that cortisol levels might possibly be a factor.

 

[triffid113]

This is interesting… but it smacks of allergic reactions to me. I have lifelong horrible allergies and all my life I’ve noticed if I get a cold or even anything that sets off the immune system - like an injury - my allergies disappear. I read somewhere that your system can only make so many inflammatory cytokines and when your body uses them up on something else - that’s it.

So there is this allergy remedy proposed by the lipid doctor, Dr. Barry Sears (read it in OmegaRx). He says the exact same enzymes are used to digest fat that can turn into inflammatory cytokines as those to digest omega-3, which cannot turn into inflammatory cytokines. Therefore, if you eat enough omega 3 to use up those enzymes, you CANNOT mount an inflammatory attack. When Flonase stopped working for me, I tried the OmegaRx and it works. However it’s - idk , 11k to 13k of omega3. So I would take 11 or 13 1g pills of omega3 every morning. After circulating cytokines were out of my system (3 days), it would work. You have to get omega3 w/o seaweed in it because that hurts your gut. However, that is a lot of fat and after a year my gut could not handle it anymore. If you can handle it, it would be very interesting to see if it works for CFS.

I thought at first my allergies were finally taming down as I got older. But - no - it turns out arthritis is an allergy and my inflammatory cytokines are just attacking my joints instead.

 

[triffid113]

So, yes, if I get a cold, my joints stop hurting. Inflammatory cytokines are used up attacking the cold germs.

 

[triffid113]

So if the omega3 solution works, it just means you have prevented inflammation… not that things-gone-wrong are fixed… thus as soon as your cytokines are free to attack it - they go back to doing so.

So, idk if there’s another good way to work this. I mean, if you catch a cold and felt well and used the “wellness” to work out hard enough to cause inflammation - that might give your inflammatory cytokines something else to work on, but that’s not very sustainable. If there is some other way to use this phenomenon I would try it myself.

 

[triffid113]

The potential tie to cortisol is extremely interesting. For what it’s worth, it takes zinc to make adrenal hormones like cortisol. And zinc plus protein would in fact clear up my allergies at a high enough dose.

I had forgotten that now that my allergies are arthritis…something I can still function with.

 

[Sonja J]

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.

I had carboplatin I am pretty sure, as one of the drugs in the cocktail. My ME symptoms of brain fog, malaise etc vanished. I also had no nausea, despite the doctors warning me of it and prescribing anti-nausea medication, I never had that either. I guess I was 'lucky'?

 

[Sonja J]

@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.

Thanks for all your comments kushami! I will find out the chemo drugs. As for LDN, I haven't pursued it because even if you do end up getting it, there is no way to know what dose to ask for when having it made up. There are so many variations of dosage I see when reading the forums. Also, I am taking tramadol, a fairly low dose, which gets me through the day without masking the symptoms so much that I overdo things, but enough that I am not moaning in pain (sometimes I still do...).

 

[Sonja J]

@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/

Thank you!!

 

[Sonja J]

Just a very rough question posed to AI:

Thanks! This is fascinating. I feel like this is exactly what I need to show my GP to get her to find me a specialist who can at least start a conversation about a possible treatment plan!

 

[Sonja J]

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.

The more I read these comments the more I realize I need to find the information about my drug cocktail and the timeline. I am on it!!

 

[Sonja J]

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.

Hmmm. I wonder if there have been any studies or experiences of Copaxone?

 

[Florida Guy]

@Sonja J i find it incredible that carboplatin not only cured ME symptoms and also gave no nausea. That drug is known for being nauseous. It must have been a low dose. I am definitely not going to try it again and do not recommend it. Did you take it IV?