Pulsed high dose methylprednisolone + inosine + inositol = cured?

[pattismith]

I started methylprednisolone oral every other day a week ago
day 1 = 480 mg
day 5 = 480 mg
day 7 = 320 mg

I took it with Valacyclovir to keep my herpesvirus under control;

Pain was gone very quickly (all kind of pains), energy back

then I added Inosine/inositol two days ago….

Brain is clear and positive, I can socialize with people, I have energy to smile and laugh and making up my eyes, I am not the same person at all.

I am feeling so great, like if I was under cocaine (well I just speculating as I never tried).

Today I woke up early and washed three of my dogs, something I was willing to do for months but couldn't find the energy!

It means to me that the underlying process at play in my disease is auto-immune.
Thank you @MartinDH who gave me strength to do this trial.

Time will tell if the effect is not fading of course.

 

[Martin aka paused||M.E.]

@pattismith
So happy it gives you some release. I got from very severe to severe. But it’s not very easy too keep inflammation In check afterwards. I do it with herbs. How do you do that? So of course no cure.

No yI Adresse energy. I have my focus on the Krebs cycle. My theory is that our cells can’t produce sufficient ATP. So I will Tests the metabolic and there intermediates in the plasma (I think testing them in the blood is not a good idea)

 

[valentinelynx]

I do hope the effects last for you! Years ago I met a brilliant and kind rheumatologist, an attending physician where I was doing my internship. He was interested in fibromyalgia (which is what I told people I had then because it was less stigmatized than CFS, albeit barely) and me and suggested I try a prednisone burst. I think it was 5 days? I did feel better, more alert and probably less pain (I don't recall very well now). However, in those days I was still in my 80% remission days, or I wouldn't have been doing an internship that had me working up to 110 hour weeks! This was before the mandatory 80-hour limit on residents' work hours. The effects were not persistent, however. Of course, I was massively overdoing it even for a healthy person...

Sounds like you must have some serious underlying inflammation. Autoimmunity is certainly likely. Have you been tested for things like RA, SLE, Sjögren's? Or for the more obscure things like GAD65 or the autonomic receptor autoantibodies? @Gingergrrl is a much better source of all things autoimmune than I am, I'm sure!

Enjoy the feelings of wellness! Cocaine is an interesting drug. It makes you feel like you can do no wrong. Or so I've been told...

 

[pattismith]

Sounds like you must have some serious underlying inflammation. Autoimmunity is certainly likely. Have you been tested for things like RA, SLE, Sjögren's? Or for the more obscure things like GAD65 or the autonomic receptor autoantibodies? @Gingergrrl is a much better source of all things autoimmune than I am, I'm sure!

Enjoy the feelings of wellness! Cocaine is an interesting drug. It makes you feel like you can do no wrong. Or so I've been told...

until last august, I had no reason to think any auto-immune process was at play. Despite all my testing on auto-antibodies, added to my rheumatologist testing, everything was always negative....
Then after 30 years of illness, I got at the same time hyperthyroid + menopausal + auto-immune thyroiditis....

I went worse and worse, and I felt it was the right moment to do some more research on auto-antibodies testing.

The Celltrend test came back very positive to alpha adrenergics + muscarinic M3 + ETAR + AT1R
https://forums.phoenixrising.me/threads/antibodies-against-gpcr.59376/#post-2242213

I don't have any orthostatic anomaly, so it was a surprise to me, but I have autonomic anomalies (ventricular extrasystoles + wrinkle finger test negative + sicca syndrome) and sensory Small fiber Neuropathy symptoms.

My doctor gave me some classical cortisone, and it seemed to be helpful, but I wasn't very happy to stick on this kind of drug for too long so stopped it.

For one month, I noticed that the symptoms were coming back, so I started this trial.

 

[Martin aka paused||M.E.]

until last august, I had no reason to think any auto-immune process was at play. Despite all my testing on auto-antibodies, added to my rheumatologist testing, everything was always negative....
Then after 30 years of illness, I got at the same time hyperthyroid + menopausal + auto-immune thyroiditis....

I went worse and worse, and I felt it was the right moment to do some more research on auto-antibodies testing.

The Celltrend test came back very positive to alpha adrenergics + muscarinic M3 + ETAR + AT1R
https://forums.phoenixrising.me/threads/antibodies-against-gpcr.59376/#post-2242213

I don't have any orthostatic anomaly, so it was a surprise to me, but I have autonomic anomalies (ventricular extrasystoles + wrinkle finger test negative + sicca syndrome) and sensory Small fiber Neuropathy symptoms.

My doctor gave me some classical cortisone, and it seemed to be helpful, but I wasn't very happy to stick on this kind of drug for too long so stopped it.

For one month, I noticed that the symptoms were coming back, so I started this trial.

What do you do for energy?

 

[Hip]

I started methylprednisolone oral every other day a week ago
day 1 = 480 mg
day 5 = 480 mg
day 7 = 320 mg

It's quite common for ME/CFS patients to initially feel much better when taking corticosteroids. However, it's also common for them to get much worse after several weeks on steroids. This may be because the immunosuppressive effects of the steroids allow underlying viral infections to proliferate.

Some people use one-off single doses of corticosteroids as a PEM preventer — see this post. However, this is just used for one day occasionally, which means that there is only temporary immunosuppression, not significant enough to cause issues.

 

[pattismith]

It's quite common for ME/CFS patients to initially feel much better when taking corticosteroids. However, it's also common for them to get much worse after several weeks on steroids. This may be because the immunosuppressive effects of the steroids allow underlying viral infections to proliferate.

Some people use one-off single doses of corticosteroids as a PEM preventer — see this post. However, this is just used for one day occasionally, which means that there is only temporary immunosuppression, not significant enough to cause issues.

yes I agree with you hip ... immunosuppressive doses are very risky, and I hope I won't catch a bad infection that will ruin all my trial and make me worse.

 

[Hip]

I hope I won't catch a bad infection that will ruin all my trial and make me worse.

It's not so much catching a new infection, but rather that ME/CFS may be caused by an existing ongoing low-level infection in the body (that's one theory of the cause of ME/CFS).

For example, there's lots of evidence of ongoing enterovirus infection in ME/CFS patients. So corticosteroids may make that ongoing infection worse.

 

[pattismith]

It's not so much catching a new infection, but rather that ME/CFS may be caused by an existing ongoing low-level infection in the body (that's one theory of the cause of ME/CFS).

For example, there's lots of evidence of ongoing enterovirus infection in ME/CFS patients. So corticosteroids may make that ongoing infection worse.

yes, in both cases (catching a new infection or worsening of an ongoing infection) I will just be worse.... I understand it quite well.

 

[Gingergrrl]

@Gingergrrl is a much better source of all things autoimmune than I am, I'm sure!

Not necessarily but if anyone in this thread had a specific question, I will do my best to answer . I have never taken Prednisone but had a horrific reaction to Decadron in early 2016. I do take Cortef and am still in the process of tapering off it and if I can complete the taper as planned, I will be off it by June and the entire taper will have taken approx two years .

 

[Martin aka paused||M.E.]

It’s the third week after the infusion and I still improve... The examination if there is any virus in the tissues is a very complex top... I think HH-7 or enterovirus... I will check the immune system first. Because there are some markers that indicate chronic infection... Otherwise it will get very expensive.... German guidelines tell us, that a PCR of a stool sample is also a good method to test for enteroviral infection.

But if you don't do anything against the inflammation now it will come back.

 

[jpcv]

I tried prednisone 1mg/kg dose but it didn´t work for me.

 

[Martin aka paused||M.E.]

Hey got my results from the laboratory... ATP is at 99%.... How is that possible???? Blood draw was before the cortisone therapy....

 

[HRManager]

Wouldn't taking the antiviral with the cortico keep any underlying infection under control? Or would it not be strong enough?

 

[pattismith]

Just wanted to share with you that I just had kidney toxicity from Valacyclovir a few days ago.

Hopefully, I had abdominal pain and the problem was quickly detected before any serious event.

This is the second serious drug adverse effect I got. The first one was with Allopurinol (eye episcleritis) after only one or two intakes.
Thinking about these bad reactions, it may be that I have an underlying auto-immune disease (I have auto-immune thyroiditis but could have something else) that makes me more sensitive to drugs, possibly with immune complexes in the blood.

 

[Yuno]

I started methylprednisolone oral every other day a week ago
day 1 = 480 mg
day 5 = 480 mg
day 7 = 320 mg

I took it with Valacyclovir to keep my herpesvirus under control;

Pain was gone very quickly (all kind of pains), energy back

then I added Inosine/inositol two days ago….

Brain is clear and positive, I can socialize with people, I have energy to smile and laugh and making up my eyes, I am not the same person at all.

I am feeling so great, like if I was under cocaine (well I just speculating as I never tried).

Today I woke up early and washed three of my dogs, something I was willing to do for months but couldn't find the energy!

It means to me that the underlying process at play in my disease is auto-immune.
Thank you @MartinDH who gave me strength to do this trial.

Time will tell if the effect is not fading of course.

glad you are feeling so well! considering a similar approach. why did you add inositol?

 

[Yuno]

Hey got my results from the laboratory... ATP is at 99%.... How is that possible???? Blood draw was before the cortisone therapy....

what test was it? which laboratory?

 

[pattismith]

glad you are feeling so well! considering a similar approach. why did you add inositol?

Inosine + inositol is an association that already helped me in the past.
I stopped my corticosteroid trial a few days ago, as I don't want to take any immuno suppressive drug during the coronavirus pandemia, which threatens in France just now. I hope the good effect I had from cortico will not fade too quickly.

 

[Martin aka paused||M.E.]

what test was it? which laboratory?

Lab4more... Can't remember the test name

 

[Martin aka paused||M.E.]

Inosine + inositol is an association that already helped me in the past.
I stopped my corticosteroid trial a few days ago, as I don't want to take any immuno suppressive drug during the coronavirus pandemia, which threatens in France just now. I hope the good effect I had from cortico will not fade too quickly.

If you maintain it with herbs, it won't