Acute ebv reactivation and dhea

[godlovesatrier]

Yeah it's and NHS endocrinologist though. So the investigation is a bit basic. You'd have to go to London to get a thorough workup. Ucl is an amazing hospital because most of the top talent goes there. Sadly not the case in the middle of England. Nobody wants to work here.

Anyway my hospital is a good one thankfully. So it could be worse.

It's taken....hmm 48 hours for the cortisol (I assume) to improve to a degree where I've got my strength back. Haven't felt strong for probably a week? And then only for a few days. It won't last long though they need a rest.

But with the stuff I take on Josh's protocol my body bounces back incredibly quickly. Without all that is have no hope in hell.

Hopefully blood test results soon

 

[godlovesatrier]

Finally got the rest results!! If this doesn't show how bad the NHS is now due to under funding to anyone who doesn't live here I don't know what does. Just had to explain to the endo how acute stress works ...god help me.

Anyway they confirmed i had low cortisol on my last test. Not stupidly low but lower than it should have been. At the time I was acutely stressed and suffering badly from ebv. Anyway this confirms now that when I'm stressed for too long my body can't produce enough cortisol and then ebv runs rampant. As I got the test 5 weeks into acute stress.

She then said to me "but acute stress means your cortisol should be high". So I explained to her how acute stress works on the body. It's bad when you know MORE than the doctor does!!!!

@Learner1 @CSMLSM

It's nice to have blood tests prove you're not crazy.

They will retest me and my acth. Sadly I'm expecting it to be absolutely fine because I'm no longer stressed!

But I'm glad I got something out of this debacle.

@YippeeKi YOW !! You might enjoy reading this too

 

[CSMLSM]

Finally got the rest results!

Thank you for letting me know.

You deserve a medal for still putting up with them. It stressed me so much it was more productive and beneficial for my health to avoid the NHS all together when possible.

 

[godlovesatrier]

Oh I don't blame you. Or a thing else for doing that. I hate to say anything bad about the NHS but this particular person was a bit useless.

Oh Ans they did happen to test my growth hormone level which was healthy. Which is good because nobody's ever tested that before.

I'm seeing Dr Bansal in December. I'm sure he may be able to get me the immune tests I need and maybe check my immunoglobulin levels properly. I tried to do this via my MP and never got a reply bad when even you're MP can't help.

 

[CSMLSM]

I tried to do this via my MP and never got a reply bad when even you're MP can't help.

Maybe try again as they recently created an all parlimentary group on ME/CFS so they will care more now maybe.
ME association has news on it from earlier this year.

 

[YippeeKi YOW !!]

Hopefully my endocrinologist picks up on this.

Hope springs eternal. Which is fortunate because in many circumstances, the other party gives little spport for that hoping ....

Just had to explain to the endo how acute stress works ...god help me.

Holy crap !!!

She then said to me "but acute stress means your cortisol should be high". So I explained to her how acute stress works on the body. It's bad when you know MORE than the doctor does!!!!

Oh my flucking Aunt Fanny!!!!?!?!?!?!! That's just ... like .... gobsmackingly idiotic, even for, say, a modestly educated layperson. For an endocrine specialist, it just totally buggers the imagination.

I'm rarely stunned by almost anything about the lamentable state ofignorance in much of the medical community, but this one is a real stopper .....

@YippeeKi YOW !! You might enjoy reading this too

I'm not sure that 'enjoy' is the word I'd use for my reaction to it , but I'm grateful to you for tagging me in !!!

I hate to say anything bad about the NHS but this particular person was a bit useless.

Wow !!! You are SOOOO much kinder than I am, Trier ....

Maybe try again as they recently created an all parlimentary group on ME/CFS so they will care more now maybe.

Ha .

Parliament will prove to be as useless in the pursuit of answers and help as most of the Drs practicing whatever you want to call what they do. I'm loathe to use the term 'medicine' ...

 

[YippeeKi YOW !!]

I wrote a multi-response post to all this, then it double posted then I tried to delete one of the posts and both disappeared. Am asking a mod for help in restring it ....

 

[godlovesatrier]

I have to agree about the parliamentary group I don't really think that will do a damn thing and I'm not being negative I just believe that's the reality. It won't do much for my cause. It might in the future though. But this governments tenure is almost over I think.

Thanks for the reply yipee. I have to agree with all your points

 

[Learner1]

@godlovesatrier It's not surprising. Your cortisol is low. Adrenal insufficiency is not unknown when patients have had a chronic illness. It is surprising that an endocrinologist would not know about adrenal insufficiency.

The next step would be to test ACTH, but better yet, do an ACTH stimulation test which typically happens in the IV area of a hospital. I did one and responded just fine to the ACTH, seemed producing ACTH in the first place was my problem

Can you do a 24-hour saliva or urine cortisol test where you test at 4 or 5 points during the day? That would give you an idea of when you might need additional cortisol.

The simple answer is to take a little bit of hydrocortisone. Adrenal insufficiency is nothing to fool around with, all you need is some additional stressor and you can end up with an adrenal crisis, which I found out the hard way- excruciating pain just above my kidneys- it can be fatal, so having some tools (hydrocortisone) to be able to cope with stressors is needed.

You might finally attached article interesting. He says that 15mg hydrocortisone is a replacement, but I've read elsewhere that 30 mg in a day is a full replacement.

You don't produce cortisol all at once, so typically dosing is broken up through the day, starting sometime after you wake up, immediately if you can't get out of bed, or 1-2 hours later If you crash after you're up, then dosing three to five hour intervals for a total of 2-3 doses in a day. Typically, we produce the most cortisol in the morning and then it drops gradually through the day until bedtime, so dosing higher in the morning, then lower later in the day is best. This is where the 24-hour cortisol results can be helpful.

I started at 25ng, doses 10-10-5 at 8am, 11am and 2pm, then, as my antivirals and mitochondrial protocol worked, I was gradually able to reduce my dosing and eventually get off of it over 5 years. I found at first having the 5 mg pills, then 2.5mg pills, then 1mg gave me the flexibility to dose as I needed to. I did three doses a day for the first couple of years, then was on two doses a day, and then finally I was just taking 1 mg at 10: a.m or 1mg mid afternoon If I was having a stressful day. I still have it around in case I need it, but even though I've been through a lot of stress in the past few months, I haven't needed it, so it's useful for when your body's being assaulted by viruses, and once you solve the other problems, hopefully your adrenals will recover as well.

 

[godlovesatrier]

Yep not to worry I remember our chats about cortisol, I also researched it and spoke to several other people (mainly yourself i think) about it so I haven't forgotten everything you've summarised in your post. Although hope it helps someone else.

DHEA works absolutely fine to get run away inflammation down but of course nothing works for cortisol. Now that I am no longer moving house/changing jobs, if this ever happened again low doses would certainly fix it. However Dr Chia explicitly says how bad cortisone is for ME patients, there is a very real risk of doing harm if you have a certain probably unclear subset makeup. So that's a very real warning.

At any rate I had forgotten about the 5 point test, I'll get one of those. As I am expecting my ACTH test to be absolutely fine, however it would be interesting to see if my cortisol throughout the day is ok or not.

Does cortisol get knocked around in conjunction with adrenaline I wonder. I seem to have major dysautonomia flares after adrenaline and sex hormone spikes/troughs. In fact out of my last 6 crashes, 4 of them were due to this particular set of events. Which is undoubtedly still HPA axis related. However I don't have any symptoms of adrenal issues when these episodes come on, I just get bad dysautonomia which last maybe a week and then goes away.

Anyway the NHS are doing an ACTH test next, I am just trying to get the blood test done, as I am going away next week and currently taking egcg which tanks testosterone so may need to stop it for a few days.

I've ordered the 24 hour cortisol test, so be interesting to see what that shows up, I might do it on a Thursday as I notice that my body starts to flag on Wednesday and by Thursday I feel more frazzled, I believe this is related to work stress and the sheer number of meetings we have.

 

[Learner1]

Glad you're following up.

Does cortisol get knocked around in conjunction with adrenaline I wonder. I seem to have major dysautonomia flares after adrenaline and sex hormone spikes/troughs. In fact out of my last 6 crashes, 4 of them were due to this particular set of events. Which is undoubtedly still HPA axis related. However I don't have any symptoms of adrenal issues when these episodes come on, I just get bad dysautonomia which last maybe a week and then goes away.

Yes, their actions are related. There are some good descriptions on the web, however most of the ones I saw focus on people having high cortisol from stress, which is not our situation, That chronic infections have beaten up our adrenal function.

My doctors have also checked aldosterone as an indication of my adrenal function - it was low when I was sicker, but more normal now.

Another thing to consider is doing the CellTrend test to see if you have adrenergic or other antibodies related to ME/CFS and POTS, which maybe affecting all of this as well.

However Dr Chia explicitly says how bad cortisone is for ME patients,

Can you explain more or provide a reference on this? The Holtorf article I provided opposes that statement and my doctor, who is one of the ME/CFS Clinicians Coalition disagrees with that statement as well, being very supportive of my using cortisol as needed.

DHEA works absolutely fine to get run away inflammation down but of course nothing works for cortisol.

That makes sense.

 

[godlovesatrier]

Hmm yeah I am wondering, if I stay away from specific activities I am noticing that I will have far fewer crashes. But I shouldn't be crashing from those activities to begin with. It is possible that low dose hydro beforehand would actually stop the worse outcomes.

I can't find a reference but I think it was something Dr Chia said himself in one of his interviews. But it could be older information. Maybe @Hip knows of a reference.

I am really pleased I figured out the DHEA thing. I've also noticed DHEA seems to help me in some other areas too, but it's limited to ebv reactivation and that one other thing, nothing else.

I think the 5 point saliva cortisol test I've ordered should give more clarification for suggested treatment. I am going to do the test on a Thursday which is often the day when I am most tired. I think this tiredness comes from stress or viral titers, not sure which.

 

[godlovesatrier]

I found one of Dr Chia's sources @Learner1 here it is:

https://forums.phoenixrising.me/thr...stions-should-i-ask.49595/page-13#post-917696

• He said that prednisone can make patients remarkably better for a short period of time. He talked about two patients who were returned to near full health for two weeks. BUT... when they tapered off they got much worse and ended up in the hospital. He believes it allowed a latent enterovirus to bloom and cause encephalitis.

Sadly no mention of dosage, almost sounds like they took the full dose, which we all know is a bad idea. As lots of ME report feeling horrific after that and sometimes never recovering either, hardly surprising considering it's immune suppressive.

I know you are saying that at low doses it isn't and others agree with you and your doctor there.

 

[Learner1]

I found one of Dr Chia's sources @Learner1 here it is:

https://forums.phoenixrising.me/thr...stions-should-i-ask.49595/page-13#post-917696

Sadly no mention of dosage, almost sounds like they took the full dose, which we all know is a bad idea. As lots of ME report feeling horrific after that and sometimes never recovering either, hardly surprising considering it's immune suppressive.

Prednisone is ~4-5x stronger than hydrocortisone.

There's a big difference between taking a course of prednisone, which is immunosuppressive, and taking hydrocortisone to replace cortisol that the body is not adequately making. The idea with hydrocortisone replacement is to provide it at levels so the body can function "normally," not to suppress the body's normal inflammatory/immune processes.

I know you are saying that at low doses it isn't and others agree with you and your doctor there.

Exactly.