low dose hydrocortisone without impairing immune response

[Rlman]

Hi Waverunner, I've also read how stress increases cortisol output, leading to a variety of problems. I think one stress that is particularly significant for pwME/CFS is a chronic, untreated infection. I've read (and this makes sense to me), that people in the early stages of a chronic infection tend to have higher cortisol levels. But this stress response eventually wears down the adrenals to the point where excessive cortisol production reverses and cortisol insufficiency develops. --- All theoretical of course.

Hi RIman,

Just a quick mention: My understanding is the adrenal glands have the highest concentration of Vitamin C of all the organs/glands of the the body. When we have some kind of infection going on, oxidation occurs, which can quickly deplete our anti-oxidant Vit. C levels; which I can only assume would negatively affect adrenal function.

This is one of the reasons I'm currently researching liposomal Vitamin C as a supplement, with an eye toward increasing my anti-oxidants and fortifying my adrenal glands in the process. Lipo C is far more readily absorbed into our cells and bloodstream than regular Vit. C, apparently being as good or better than IV Vitamin C. If you're nervous about taking HC, you might want to consider some relatively high doses of liposomal C. --- Good luck in dealing with your low cortisol situation.

Hi Wayne,
thanks so much for the tip re liposomal Vit C. I read Dr. Lam protocol is really into that. Also want to thank you for sharing your experience with HC. Your article about it from years ago on ProHealth was the first one I found about people with CFS taking Cortef (I found it in 2012). Also enjoy your many other posts on this forum. Wishing you a full recovery!

 

[Wayne]

Hi Wayne, thanks so much for the tip re liposomal Vit C. I read Dr. Lam protocol is really into that.

Hey RIman, thanks for the tip on Dr. Lam, I'll definitely check him out. Another doctor you may be interested in is Thomas Levy. Here's a snippet about him from THIS ARTICLE:

Dr. Thomas Levy has given thousands of high-dose IV Vitamin C treatments, and claims that: “Taking 4 to 5 grams of liposomal vitamin C is more effective – actually much more effective- than 50 grams of vitamin C intravenously.”

 

[JaimeS]

Here is a pipedream: Some brilliant medical statistician would take all our lab tests, symptoms and med responses/reactions and see if there is a pattern. Some of us react badly to meds that should help us according to diagnostic tests, and some do well.

I wonder if there is some pattern of people with certain abnormal lab test responding well or badly to different groups of meds?

I have mildly low morning cortisol and tried a very low dose of Isocort but didn't feel good on it (though as soon as I stopped it, I was "back to normal.") I wonder if there is a pattern amongst us as far as responding or having reactions to certain classes of meds? I also did badly with Florinef and a bunch of other drugs that help other patients.

But at this point, this is a pipedream--extremely complex, so many variables.

Sushi

Sushi - if I could get people on the board to agree, I would collate data. I would collate it until Kingdom Come.

-J

 

[Sushi]

Sushi - if I could get people on the board to agree, I would collate data. I would collate it until Kingdom Come.

There would probably be a privacy issue with collecting data, though that might be overcome if it were done in conjunction with a well-known researcher/institution. As an individual, here on this board, I don't think you would get many participants.

Sushi

 

[JaimeS]

As an individual, here on this board, I don't think you would get many participants.

...I work for a university? Affiliated with Johns Hopkins? I could make it a study?

Honestly, I have no idea if my school would go in for that, though. Non-coincidentally, I've been thinking of talking to them about research, and about this idea in particular.

I really would need a statistician to discern whether my correlations were significant.

-J

 

[Sushi]

...I work for a university? Affiliated with Johns Hopkins? I could make it a study?

That could work--are you up for proposing it?

 

[JaimeS]

Yessss. Haven't done before. But more than willing!

-J

 

[invisiblejungle]

I'm happy to talk about my dosing. I take a combination of dexamethasone which is a long acting steroid and hydrocortisone. I started at my diagnosis in 2010 with 25 mg of HC. Since then I have also trialed prednisone and prednisolone with not much success. Since last Jan, I have taken anywhere from 0.25 dex to 0.5 dex with combinations of 5-20 HC over the past year. I'm currently on 0.5 dex and 5 HC. The dex provides a base of steroid that keeps me steady throughout the day and I use the HC to more closely approximate a morning peak.

I seem to do better on a long acting steroid without the peaks and troughs many people experience with HC use. This seems to be due to my Primary Immunodeficiency Disease and I am hopeful that my treatment with Hizentra may correct this and allow me to take a lower overall steroid dose in the future. Or really think big and hope that it will correct my autoimmune disorder (as IgG therapy has been shown to do in some studies) and I will be able to correct my AI for good. But either way, I am making progress.

Hi Ema,

I had never heard of taking a combination of dexamethasone and HC, and I find this method intriguing.

Do you take the dexamethasone in the morning or night? How does this combo "feel" compared to HC multi-dosing?

Also, can you recommend any adrenal-specific forums? I used to belong to the NTH-Adrenals Yahoo group many years ago, but it doesn't seem to be around anymore.

 

[outdamnspot]

I've been posting about HC in my own thread but would appreciate hearing experiences from others who were in a severe/bedridden state. What happened when you tried HC? Did it crash you further or were you able to tolerate it?

 

[godlovesatrier]

Since covid my cortisol has either been low (now backed up by plenty of studies) with hyper inflammation. A few doses per month of hydro 5mg wiped that inflammation out and reset my immune system. Dr Suzan Jackson's Dr recommend this after she has covid and it worked or I'd never have even considered it.

But now post covid (11 weeks) I've begun to be in a position where my adrenal glands are overly stressed due to infection (COVID), full time work and several life events. So that's lead me to try 5mg hydrocortisone again but daily this time.

Howberr my sleep is pretty poor due to high cortisol at night. Usually at 3am so I'm going to take phospheyldserine for that at the 1000mg dose as i dont think ibe ever taken enough in thr past.

Well yesterday I had the best day since my first dose of HC prob 2 months ago. I felt fantastic yesterday but my hear rate was too high (don't think the two are remotely related). So the high heart rate crashed me a bit but the HC did make me feel normal did the first time in weeks. I had no noise sensitivity, no brainfog, no fatigue on exertion and no dizziness when concentrating where adrenaline is involved. I did overdo it a bit but I'll rest today and get back to normal.

One thing I'd like to add is that magnesium ascorbate 3x a day has been a bit of a saviour prior to the HC. Taken together with everything else it helps.

Also I noticed post COVID thar suddenly dhea no longer causes anxiety when I take it and b12 no longer causes brainfog. I believe it is because both of these are now much lower.

As multiple studies have now proven low cortisol and serotonin in long covid patients. Supplementary low dose hc feels like a last resort but also a necessary one.

I also saw heaps comment about b12. Going to see if I can dose that with the HC to offset the inflammation produced by the ongoing infection/s.

I'll try to report back in a week but I think for the next few months I'll be reliant on HC to get through. Until things calm down a bit.

 

[Wayne]

One thing I'd like to add is that magnesium ascorbate 3x a day has been a bit of a saviour prior to the HC. Taken together with everything else it helps.

Hi @godlovesatrier -- You may want to check out the following thread where Dr. Levy writes extensively about his Vitamin C/Hydrocortisone protocol that was so helpful for him and his recovery from COVID. Below the link is a snippet from his long article.

Dr. Thomas Levy -- How COVID Helped Me Regain Good Health​

The vitamin C-cortisol protocol has had the following remarkable effects described below, improving or resolving a wide array of symptoms, nearly all of which had been present for decades:

• The complete elimination of runny nose and the associated allergy-like symptoms
  • The resolution of a chronic left middle ear fluid/mucus accumulation, sometimes associated with vertigo, and a literal inability to sleep with the head turned to the left on the pillow without getting dizzy
    • The return of free and easy breathing at all times, without periods of nasal stuffiness and the need to breathe through the mouth. Also, the loss of an "air hunger," a peculiar, seemingly neurotic, inability to take a "full" breath, but without a genuine underlying shortness of breath. It would "disappear" the moment I got distracted and started doing something other than concentrating on my breathing.
    • The ability to consistently sleep soundly, something I had never known in my entire life
    • The complete elimination of chronic cough (which had been greatly reduced but not completely eliminated by the hydrogen peroxide nebulization protocol); family and close friends had just accepted my "need" to cough hundreds of times daily, even in the absence of any acute respiratory infection. It is actually the minimal return of the desire to cough (a "sentinel" symptom) that allows me to increase, usually temporarily, the size or frequency of a cortisol dose with my vitamin C.
    • The elimination of the need to continue my nebulization on a regular basis, as cough would tend to recur if not done at least every few days
    • The complete disappearance of years of metallic taste in the throat
    • A striking increase in energy, without the need or desire to take naps
    • A striking decrease in pulse and a stabilization of often-elevated blood pressure (pulse from high 80s to low 90s now dropping as low as high 60s; BPs going from diastolics of 80 to 90 down to mid-60s to low 70s)
    • The complete resolution of heartburn and an acid stomach, present for many decades with an enormous daily intake of sodium bicarbonate for relief, along with other agents
    • An improvement in long-standing heat and cold sensitivity, along with a dramatic decrease in the occurrence of what had been daily soaking night sweats present for the past 8 years or so
    • A significant decline in chronic lower back pain present for many years
    • The loss of a tendency to be depressed
    • The complete loss of sugar cravings, with very little desire to consume sweets even when readily available. I am still marveling at the disappearance of this lifelong "obsession."

 

[godlovesatrier]

Yes I found it has worked for lung inflammation brought on by allergies Inc long covid lung inflammation. Doesn't work if I have a bad cold have to use my inhaler for that.

And the fatigue and brainfog that I normally experience from birch pollen isn't there. Now I do put that down to the magnesium ascorbate but it's also possible that the COVID fever reset my allergies because I was able to eat a kiwi for the first time in years thst I can remember. My oral allergy syndrome is suddenly much better than it was.

I haven't had any of the other improvements he talks about that I'm aware of. I think I'm getting more out of the lactoferrin in terms of energy.

As for the HC. I think it's been a bit too stimulating. I'm going to try taking slightly less. But first going to take an anti anxiety instead.

 

[heapsreal]

Yes I found it has worked for lung inflammation brought on by allergies Inc long covid lung inflammation. Doesn't work if I have a bad cold have to use my inhaler for that.

And the fatigue and brainfog that I normally experience from birch pollen isn't there. Now I do put that down to the magnesium ascorbate but it's also possible that the COVID fever reset my allergies because I was able to eat a kiwi for the first time in years thst I can remember. My oral allergy syndrome is suddenly much better than it was.

I haven't had any of the other improvements he talks about that I'm aware of. I think I'm getting more out of the lactoferrin in terms of energy.

As for the HC. I think it's been a bit too stimulating. I'm going to try taking slightly less. But first going to take an anti anxiety instead.

Have you tried pregnenolone?
The normal doses most use is 25-50mg a day. Initially that was too strong for me. If I recall correctly I used 1-2mg in a cream Initially and switched to tablets as I could tolerate pregnenolone and not become overstimulated by it. It did increase my low morning cortisol levels.

Phosphatidylserine did help when night time cortisol was high but I havent needed it in awhile now.