Created big reduction in symptoms - unsure how to progress

[alex599gto]

Hi,

I have been diagnosed as ME/CFS/fibromyalgia.

I managed to create a big reduction in my symptoms. I felt normal for the first time in years. A major difference. Very big reduction in pain/exercises intolerance/cognition problems.

I took a very large dose of a cortisol based nasal spray. 1500mcg of Beconase. The effects lasted about 24 hours and took 2-3 hours to start after spraying.

I saw an endocrinologist, a rheumatologist, and an ENT. They could not find anything wrong with me. They thought it could be a placebo but I repeated it and it worked again. I have also spoken to two GPs and they don't know.

I also tried prednisolone, an injection of depo-medrone and a preventer inhaler. None of these worked.

If I had to describe the feeling, it was like it hit a switch which turned my parasympathetic nervous system on and normalised my ANS. I felt very calm, clear head and body.

Does anyone have any idea what could be happening or who I should go and see?

I emailed a few doctors who do ME research and they haven't replied. My guess is that they think I'm crazy.

WARNING WARNING: When I did this my lungs became incredibly tight. It felt like I was suffocating. I felt fine later but I do not encourage you to try it. I have warned you. I think I had an allergic reaction to the chemicals in the spray. If you suffocate and die it is not my fault.

Kind regards,

Alex

 

[Hip]

I managed to create a big reduction in my symptoms. I felt normal for the first time in years. A major difference. Very big reduction in pain/exercises intolerance/cognition problems.

I took a very large dose of a cortisol based nasal spray. 1500mcg of Beconase. The effects lasted about 24 hours and took 2-3 hours to start after spraying.

I've also noticed ME/CFS symptom reduction when using high doses of Beconase, a corticosteroid.

But it's common for corticosteroids to greatly reduce ME/CFS symptoms. See the corticosteroids section of this post for more details. Because corticosteroids reduce the immune response, they may temporarily quell the chronic immune activation which targets viral infections, which may cause many of the symptoms of ME/CFS.

However, ME/CFS patients who use corticosteroids long term often end up becoming much worse, probably because the immunosuppressive effects of corticosteroids eventually allows the underlying viral infections to proliferate.


If you use corticosteroids judiciously, though, not more than for example once a week, you may be able to enjoy the benefits without experiencing the downsides. But it may still be a little risky.

 

[crypt0cu1t]

However, ME/CFS patients who use corticosteroids long term often end up becoming much worse, probably because the immunosuppressive effects of corticosteroids eventually allows the underlying viral infections to proliferate.

Do you think that most people with ME have an underlying infection?

 

[crypt0cu1t]

If you suffocate and die it is not my fault.

Lmao

 

[Hip]

Do you think that most people with ME have an underlying infection?

In the case of enterovirus ME/CFS, there are loads of studies which have found chronic enterovirus infection in various tissues of ME/CFS patients: muscles, stomach and brain. In the case of herpesvirus, the evidence for chronic infection is indirect (via antibody testing).

But it may not just be the viral infection that causes ME/CFS, but also perhaps a dysfunctional or over-sensitized immune response to it.

 

[crypt0cu1t]

In the case of enterovirus ME/CFS, there are loads of studies which have found chronic enterovirus infection in various tissues of ME/CFS patients: muscles, stomach and brain. In the case of herpesvirus, the evidence for chronic infection is indirect (via antibody testing).

But it may not just be the viral infection that causes ME/CFS, but also perhaps a dysfunctional or over-sensitized immune response to it.

That makes sense! That's the main reason I'm terrified to try rituximab despite 4 doctors now recommending it to me

 

[iwillwin1day]

. If you suffocate and die it is not my fault.

Lol. The most threatening disclaimer I have ever read.

 

[alex599gto]

Hi,

I have tried other corticosteroids. The prednisolone and the depo-medrone are much stronger than the amount of Beconase I took. There was no effect.

I was thinking that maybe it was what happened with my lungs which caused the improvement.

On a diagram of the ANS it shows that constriction of the bronchi occurs in the parasympathetic division via the vagus nerve.

Could it be possible that the chemicals in the spray constricted my bronchi and this signalled parasympathetic activation? Can it work in reverse like that?

Kind regards,

Alex

 

[alex599gto]

Hello,

Does anyone have an idea about my prior post?

I had an EEG done. It shows the pattern of a head injury. She said that my head injury is focused on my brain stem. This part of the brain is connected to the vagus nerve and thus the ANS (I think). I asked her about the nasal spray theory and she thinks it is possible.

I am going to try neurofeedback to see what happens.

Kind regards,

Alex

 

[Mary]

Does anyone have an idea about my prior post?

Hi @alex599gto - I don't know anything about the ANS and constriction of the bronchi and the vagus nerve. What caught my eye was that an EEG showed a pattern of a head injury for you and that it's focused on the brain stem. I'm guessing you're very likely aware of members here who have had brain stem compression or other involvement and when it was relieved (via surgery or otherwise), recovered or made substantial improvement. One of the most well-known is Jen Brea, whose ME/CFS started with a severe viral infection but ended up being resolved with neck surgery for CCI: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/

Also this post has several links to threads regarding this issue: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/#post-2205269

 

[alex599gto]

Hi @alex599gto - I don't know anything about the ANS and constriction of the bronchi and the vagus nerve. What caught my eye was that an EEG showed a pattern of a head injury for you and that it's focused on the brain stem. I'm guessing you're very likely aware of members here who have had brain stem compression or other involvement and when it was relieved (via surgery or otherwise), recovered or made substantial improvement. One of the most well-known is Jen Brea, whose ME/CFS started with a severe viral infection but ended up being resolved with neck surgery for CCI: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/

Also this post has several links to threads regarding this issue: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/#post-2205269

Hi,

Thanks. Yes, I have seen this. My state is not as severe, but I had cervical traction done anyway and it produced no change.