Cortisone shock therapy

[Martin aka paused||M.E.]

On Tuesday my doc will try a Cortisone shock therapy. He wants to check the effect on my legs (myopathy) because the genetic test was negative and besides that we want to see which effect it has on my fatigue, flu-like feeling, brain fog etc.

We start with 500 mg methylprednisolone. Then wait two days to see how my body reacts and then give three to five days 1000mg methylprednisolone.

Anyone experiences with it?
Martin

 

[Blue Jay]

No experience with this and never heard of anyone else having it. I'd be interested to learn the outcome.

 

[Martin aka paused||M.E.]

No experience with this and never heard of anyone else having it. I'd be interested to learn the outcome.

If I survive I or Michael will answer you any questions!

 

[Wolfcub]

Wishing you the best with that treatment @MartinDH I hope it is helpful.

 

[Wishful]

Whoa, serious dosage there. I hope the doctor knows what he's doing. I forget the dosage I tried (probably 5 or 10 mg) and that triggered full remission the first time (5 days with no effect, then abrupt bouncing with energy). It worked a second time, but never again, even at double the dosage.

 

[Mary]

@MartinDH - I hope the cortisone shock therapy goes well! That is quite a high dose, but I read they do use 500 mg. for multiple sclerosis.

my fatigue, flu-like feeling, brain fog etc.

I don't know if this is at all relevant to you, but I used to have a lot of detox reactions which caused fatigue, a flu-like feeling, digestive problems and brain fog. It was basically toxins circulating in my body which caused these symptoms - it felt like being poisoned. If you have any interest in hearing more about what I did to overcome this, let me know. You may be dealing with something entirely different, or not.

 

[Markus83]

My neurologist wants me to do a three day cortison shock, too (he thinks the CFS is autoimmune mediated). However, I don't know which type of cortisone and which dosage.

I told my doc, that I believe that I have an underlying infection as root cause of my fatigue and I'm afraid that the cortisone will make the infection explode. Doc said this wouldn't happen with such a short pulse even if there where an infection.

What do you think about this? And Martin, did you discuss this issue with your doc, too? Anyway, I wish you the best for you trial.

 

[Martin aka paused||M.E.]

My neurologist wants me to do a three day cortison shock, too (he thinks the CFS is autoimmune mediated). However, I don't know which type of cortisone and which dosage.

I told my doc, that I believe that I have an underlying infection as root cause of my fatigue and I'm afraid that the cortisone will make the infection explode. Doc said this wouldn't happen with such a short pulse even if there where an infection.

What do you think about this? And Martin, did you discuss this issue with your doc, too? Anyway, I wish you the best for you trial.

I was checked for many infections multiple times. There are none

 

[lenora]

Hi Martin,

Yes, I've been on 40 mg. cortisone for the past 10 days due to Autoimmune Encephalitis brought on by my ME. Prior to that I had 5 Hospitalette Stays (as they now call them; I was a nurse for 4 yrs. and left b/c of shift-work. I re-made myself 6 times in my life). First and earliest, more intense rounds of cortisones left me (as did this one) with hallucinations and no sleep for 8 days/nights. I finally got out of hospitalette after 8-9 days. You may/will have memory problems, but it will pass. I'm now on Xanax, lowest possible dose due to Buspar & Ativan no longer working for me. I was taken off this during my stays and it balances out the highs and lows for me. I'm not/never have been a drug abuser, but I've developed high blood pressure, and a multiplicity of other syndromes as I've had this for 30++++ yrs. Miserable life, worse than my Syringomyelia (which left me in chronic pain & still hurts even today). Good prescription creams (expensive) help me deal with the pain & I've been off Fentanyl patch since way before Xmas. Don't ever want to go back on it....I was on lowest dose 3x/wk. I don't ever want to go back on it and refuse to, even now. You must find a young Pain Specialist, Neurologist and Internist...your basic three. Most of the young take Medigap...give it a try. Also,

I'm an exhausted almost 73 yr. old; happily married for almost 53 yrs. (perhaps I'm still a bit scrambled), but I just checked anniversary date with hubby. l hate to bother him too much. He's the math whiz & I'm the brain who reads nothing but highbrow books & taught myself to read @ about age 2. Just so people know me. I would love to get in touch with Michael Risch again...I lost his e-mail address. Too much damage to nerves in hands to text, so I'll forever be on e-mail. Sorry that Phoenix Rising changed, but I respect the younger culture. I have grandchildren who are part of it. That's all. I hope this helps. Lenora123. Follow the Dr.'s & read https://medicareagentnews.blogspot.com/2019/11/could-decreasing-inflammation-be-cure.htm Please check this out: Sorry, I tried to make it hot. Get the word out. Help yourself, even though it may cost you money you can't afford. Even 3 x/day.

 

[lenora]

Sorry, the last line should have read 3x/wk. Just try & see if it makes a difference. I'll send as much as I can for research as I probably began my last descent into AE prior to Xmas. Daughter in San Francisco flew in even though 4 of them had been here @ Xmas. Still, I have one daughter here, both absolutely wonderful after years of trouble. Something about having children brings out the best in people, but I respect reasons why younger ones aren't marrying, having children, have pets instead, etc. I'm very blunt (truthful) and a strong mixture of empathy for those who suffer & I want to help as much as possible. Excuse the way an "old lady" writes. Lenora123 (also on FB, but too many people have followed me around. I used to get calls from all over the world, at all hrs. Just became too much).

 

[lenora]

Martin...Book 'Brain on Fire' very easy read explains what it's like to live with Autoimmune Encephalitis. I'm just fortunate I was diagnosed & am being properly treated. 60 mg. 3 days/40 then 30, then 20mg./then 10 mg./then 0 for three days at a time. Hope this helps you make up your mind. I'd also appreciate Cathy's e-mail (kathy?) address. Hubby lives in Austin, TX for part of the yr. I don't know where Michael Risch lives...he told me that The Veterans' does a lot of research into my problems, and his. I've had brain surgery, also...easy compared to butchery of early spinal cord surgery. Don't bother thinking Mayo Clinic & Johns Hopkins has any answers; they don't. Go to Miami Institute or Barrow in AZ. You can find latest research on computer. Like I said, that's what I do now, and it's very satisfying to find info & pass it along. You'll find your way; we all do. Get new Dr.'s, and start on cortisone therapy. We're here to help you. Be better. Lenora123 (Address me anyway you want.) Will read comments for awhile and then to my books (that talk to me & I need to be filled with it).

 

[knackers323]

Anyone have a link to information about this treatment?

It is a recognised treatment for auto immune illness?

I cannot find anything online

 

[lenora]

Anyone have a link to information about this treatment?

It is a recognised treatment for auto immune illness?

I cannot find anything online

Anyone have a link to information about this treatment?

It is a recognised treatment for auto immune illness?

I cannot find anything online

Knackers: Just look under Autoimmune Encephalitis & you'll find plenty of info. It may not mention the cortisone therapy, but it will do a good job of explaining the illness itself. You'll then need to follow your Neurologist, and Internist instructions, unless you have other problems in which case other Dr.'s may be involved. It does work, but it's nasty stuff to be on. This is probably the 3rd time I've done it & the Dr.'s finally have a reason for why I kept being hospitalized. That and problems with electrolytes being metabolized (that's on me...and my daughter has helped by putting me on Gatorade. Read the article I put out about INFLAMMATION (I'm not shouting), and help yourself. It's expensive, yes, but try it even 3 x/wk. Go fellow, you can do it!!! I'm not able to text, so I'm doing it the old-fashioned way, e-mail. I'm unable to hold phone due to severe nerve damage due to other problems. Lenora 123

 

[lenora]

Knackers & Others....I don't know how into reading you are, but 'Oslow's Web' and 'Through the Shadowlands' by Julie Rehmeyer are also excellent reference books. The latter's first chapter can be skipped...too scientific, but the others are all excellent. She's a good writer. Inform yourself; the most important thing you can do. You may contact me during the day. Yes, I believe all of it is caused by an infection of some sort, but biological infections along the way can be treated. Trust me, I was a nurse albeit 50 ++ yrs. ago. Still, I follow latest research. At least I now have an answer to the latest problem. That's all we can go by, one answer leads to the next, etc., you have to be watchful about your own health. Learn!! Lenora

 

[knackers323]

@lenora thank you for your reply. Are you able to copy the information from your link regarding inflammation?
The link isn’t working

 

[lenora]

Hi Knackers...try this link on pain. I must have posted the wrong one, Sorry. The one on 'Inflammation' came from AARP magazine, interior page, sometime in January 2020. I'll try to have hubby send it again, but we've been sending copies all over kingdom come & everyone has received their up-to-date copy. Sorry, but I don't know what else to do. I don't have research on Cortisone therapy, but plenty of people are receiving it. You don't want to end up with Autoimmune Encephalitis...or worse. Good luck. Penelope




https://www.nationalgeographic.com/...1kOCLkQC_kNg8gHJ1P0pxLnjLPm-DXfy4V6XB6k9dFdjQ

 

[lenora]

Hi Knackers, If you meant the file instead of the link, I can resend the file but probably not 'til tomorrow now. I've been awake since 3:00 a.m. & I'm quite exhausted. Continuous company and then my daughter dropped by...just tired out. Yours, Penelope. Try to track this down yourself and get back to me...will send it tomorrow if you don't have any luck. P.

 

[Martin aka paused||M.E.]

So the treatment was a success bc I found out that brain inflammation indeed drives half of my symptoms (brain fog, flu-like feeling, sensitivity, headaches...).
Now that the therapy is over, the symptoms come back. So I need an anti-inflammatory diet (impossible bc I have a tube and can't find anything adequate) and maybe herbs that cross the brain-blood barrier. Curcumin is the only thing I have, wanna take fish oil, add MCT oil to my diet to higher the ratio of omega 3 to 6 (to approx 20:1)....
I will furthermore try to find a German lab that tests for infections in the tissues (have still a muscle frozen in a University Hospital but they can’t do it)

any other ideas?
Thank you so much!
@Hip
@Learner1
@pattismith

 

[Hip]

My theory is that generalized anxiety disorder can be caused by brain inflammation, and I was able to treat my anxiety by taking supplements which reduce brain inflammation. Those supplement are listed in this post.

I would say a good brain inflammation-reducing cocktail might be:

• N-acetyl-glucosamine 700 mg twice daily
• Turmeric 1000 mg twice daily — note that you want turmeric, NOT curcumin (though you can also add curcumin if you like, as that too is anti-inflammatory)
• Flaxseed oil 1 tablespoon (15 ml) of this oil daily
• Saccharomyces boulardii yeast probiotic 3 capsules daily

 

[lenora]

So the treatment was a success bc I found out that brain inflammation indeed drives half of my symptoms (brain fog, flu-like feeling, sensitivity, headaches...).
Now that the therapy is over, the symptoms come back. So I need an anti-inflammatory diet (impossible bc I have a tube and can't find anything adequate) and maybe herbs that cross the brain-blood barrier. Curcumin is the only thing I have, wanna take fish oil, add MCT oil to my diet to higher the ratio of omega 3 to 6 (to approx 20:1)....
I will furthermore try to find a German lab that tests for infections in the tissues (have still a muscle frozen in a University Hospital but they can’t do it)

any other ideas?
Thank you so much!
@Hip
@Learner1
@pattismith

Hi Martin,

Do you live in Cleveland? I went to Nsg. School and remember we had to work at University Hospital...lg. dark wards, as I recall. Just up the road from The Mayo Clinic, right? I left after 4 yrs. anyway. It just wasn't for me, and I remade myself 7 different times, in different jobs, learned them from the beginning on up...and it was the best life for me and my family.

OK....so you've had success with cortisone therapy, also. Interesting. Anyone else out there? I'd like to stay on it, except for extreme sleeplessness that accompanies it, not that I'm the best of sleepers anyway. I blamed many things along the way, but the fact is that it was probably the beginning of my SM, ACM and ME/CFS. At the rate I'm going, with a constantly compromised to non-existent immune system, I'll end up cancer. That's fine, I have no problem with it. Anyway, it may never happen, but I've known plenty of people who have fought MS along with primary illnesses I mentioned, plus ME/CFS, plus chronic pain (which I also have; another stupid name, isn't it?....right up there with chronic sinus (which I have) and chronic complainer). We really should be more on top of the names chosen for illnesses.

OK....I'm ready to get out of here. I know the younger ones don't like these "chatty" replies, so I try to keep things short. Still, I'm 73 yrs. old and some things never change. I can't use texting b/c of severe nerve damage, thus the explanation.

One more thing before I go: If anyone has access to new Research, please post it and I'll slowly get to each item as I recover. No, Autoimmune Encephalitis isn't something any of you want to get. I thought it had destroyed my brain, but it will take a long time to recover from. C'est la vie!!