how did you get out of "bedridden level" ??(even if you are still sick)

[jeff_w]

@alice111 - I saw Dr. Kaufman at the Open Medicine Institute in CA. He's a top specialist. There are really only a handful of known top specialists. If you can, get to one of them ASAP.

I had high viral titers, yes.

Good luck!

 

[WoolPippi]

@WoolPippi how much hydrocortisone did you take? And for how long?
Thanks!

I have adrenal malfunction on top of ME, I'm at 20 mg per day. PWME should start at 5 and go no higher then 17 mg/day.

 

[jeff_w]

Thank you! Which OI drugs in particular?

Propranolol and Florinef. I'm also taking Desmopressin, which indirectly helps with OI by preserving adequate blood volume.

 

[SOC]

@SOC and @jeff_w do you mind my asking who your specialists are?

I have been to many "cfs" specialist who turn out to know nothing

We're both of you diagnosed with viruses prior to antivirals?

I've seen both Dr Lerner and Dr Rey (at INIM). Both of them have prescribed antivirals for me. Yes, I was diagnosed with viruses prior to antiviral treatment.

There are too many people who claim to be CFS specialists who know very little. They might know something about the symptom chronic fatigue. IMO, the list of true ME/CFS specialists is small -- less than 10 doctors probably -- and most of them prescribe antivirals or antibiotics for documented infections.

I'm just curious, so don't feel like you should answer if you don't feel like it... but who were these "cfs" specialists you saw who knew nothing? I like to look up people who claim to treat ME/CFS but are not on my top ten list.

 

[jeff_w]

I'm just curious, so don't feel like you should answer if you don't feel like it... but who were these "cfs" specialists you saw who knew nothing? I like to look up people who claim to treat ME/CFS but are not on my top ten list.

I'm curious too about who they were, if you don't mind sharing, @alice111 . I'd also like to know what treatments they gave you.

Also, your list of useless "CFS specialists" could be a good warning for others on the board who might be considering seeing them.

 

[alice111]

I have adrenal malfunction on top of ME, I'm at 20 mg per day. PWME should start at 5 and go no higher then 17 mg/day.

and its hydrocortisone? short acting? what doses/ what times of day if you dont mind?

I ask because last year I was on cortef and recently came off as I was having some serious anxiety and other issues.

 

[alice111]

@jeff_w and @SOC off the top of my head is Dr Jan VEnter,
then there is the disastrous local new chronic complex disease clinic (in vancouver BC) which is supposed to specialise in M.E and lyme.. and man where they useless. i will try to remember others..

thanks for sharing your docs tho!

 

[SOC]

@jeff_w and @SOC off the top of my head is Dr Jan VEnter,
then there is the disastrous local new chronic complex disease clinic (in vancouver BC) which is supposed to specialise in M.E and lyme.. and man where they useless. i will try to remember others..

thanks for sharing your docs tho!

Did a quick search on Dr Jan Venter. I see what you mean. I wouldn't call the guy an ME/CFS specialist in any way, shape, or form. He would disagree, I'm sure.

My position now is that I wouldn't trust a self-proclaimed "CFS specialist" to look down my throat without A LOT of recommendations from people I'm pretty confident have ME/CFS (not fibro, or chronic fatigue, or burn out, psych-only conditions). If I haven't heard a lot about them here at PR, I wouldn't go to them. There's too many quacks out there preying on the desperate ill.

That isn't to say there aren't a few good PCPs out there doing the best they can for their ME/CFS patients, but I wouldn't call them ME/CFS specialists, expect them be able to administer the best treatments, count on them to keep up with the latest knowledge.

We need a thousand times more true ME/CFS specialists than we currently have.

 

[WoolPippi]

and its hydrocortisone? short acting? what doses/ what times of day if you dont mind?

I ask because last year I was on cortef and recently came off as I was having some serious anxiety and other issues.

Yes it's hydrocortisone. HC. I don't know of existence of short acting HC. I believe the half life of this to be 4 hours. Not sure if that's true. The only google answer for it is my own post

I take 4 mg upon waking and have to wait 45 minutes in bed for it to be converted into cortisol. Then I can get up. Then it's 5 mg at 9 o'clock; 5 mg at 12 o'clock; 4 mg at 15 hours and 2 mg at 18 hours.
When there's stress I take more.

I always carry 100 mg on my body in case I ever get into an accident or something. It's a dangerous thing, to have adrenals not working properly. It's called Addison's disease if they don't function at all.

You can cause adrenal shut down or Addison's if you take too much HC for too long. This would be, generally speaking, 20 mg per day.

I had a full spectrum hormonal analysis done by dr. Thierry Hertoghe in Bruxelles in 2009. That's blood and 24 hr urine. He's one of the top broad spectrum endocrinologists in the world. I second other posts in this thread: go to a top level dr.
Please note I pursued hormonal knowledge specifically because that was a big issue for me. I've never been to an ME specialist.

I got a bunch of hormones from him, way too many. Now I only take Hydrocortisone and Progesterone. I was on Florinef and did well. But it was only available in Belgium. In my own country, the Netherlands, I was prescribed it's sister drug Cortef. I experienced anxiety on that one without notable blood pressure benefits and weaned myself off. I'm hoping the blood pressure effects of the HC will be enough for me.

The two drugs Jeff_w mentions are hormones too. One lowers BP, funnily enough. I'd bottom out on that one. Vassopressin I had too from dr. Hertoghe. No notable result but it could be easily missed in the cocktail of hormones and effects I had then.

Once more: I have ME plus Adrenal problems. HC is strictly for my adrenal problems. It has not cured me of ME, it merely helps my body to maintain some homeostasis. Which in itself helps with ME as it prevents deteriorating. I'm still very ill and lie in bed every day for hours. But I'm way way better than a few years ago. This life is acceptable, pleasant even.

 

[alice111]

@SOC what have you heard of Dr Peterson?

 

[alice111]

(I have never seen him)

 

[alice111]

A low dose of Strattera (prescription med) and then a low dose of Yohimbe (supplement, OTC in some countries but unavailable in others). Both supposedly work by increasing the effectiveness or amount of norepinephrine, which repeatedly tested low for me. I doubt they'd be of any use for someone who has normal or elevated norepinephrine levels.

Thanks! Do you know how this would interact with Dexedrine? Can u use in conjunction or is it a one or the other situation?

 

[alice111]

@alice111 look into modafinil as it can help increase energy and probably vasoconstrict some to help with POTS/OI.

It is something that will either work straight away or not. Not a so called protocol that u have to wait along time before u can function.

Dose small like 25-50mg, normal dose is 200mg which might be too much initially for a mecfser.

There are cheap online sources compared to what many buy locally where sometimes prices are way overinflated.

Anyway something to talk over with your doctor.

good luck.

Do you know how this compares to or interacts with Dexedrine?

 

[alice111]

For me it was methylation protocol. Here's a new-to-me site with extensive info re adrenal fatigue, including this section re blood pressure.
http://www.drlam.com/articles/Adrenal_Fatigue_and_Blood_Pressure.asp

I cam across this yeeeeaaars ago. I thought it waste scribed me perfectly! But I have since done pretty much everything he suggested with no improvements... So it might just be good in theory?

 

[Valentijn]

Thanks! Do you know how this would interact with Dexedrine? Can u use in conjunction or is it a one or the other situation?

No idea ... you'd need to ask your doctor.

 

[ahmo]

I cam across this yeeeeaaars ago. I thought it waste scribed me perfectly! But I have since done pretty much everything he suggested with no improvements... So it might just be good in theory?

We each have such individual responses to things...so maybe theoretical for you, but perfect for someone else.

I found adrenal glandular very helpful, but OI was not my primary problem, more nervous system issues.

 

[ZudZud]

Low thyroid and/or liver function are just a few of the things that could give you extreme fatigue, have you gone through a process of ruling out the most common medical causes of fatigue? Is there anything that makes you feel better? Have you had medical imaging done? Blood panels, etc? What was ruled out is just as important as what was confirmed. Also, methylation can be tricky to get right.

Edit: I see you have a post mentioning hashimoto's, I strongly urge you to read about using desiccated thyroid as a treatment vs the synthetic stuff - if you can handle it, and trying the selenium loading + iodine, as described at:

http://www.stopthethyroidmadness.com/recommended-labwork/
(there's a section on treatment as well)

+
http://chriskresser.com/iodine-for-hypothyroidism-like-gasoline-on-a-fire/

Strangely enough, my neck is less swollen on b12 than on anything else...

Low thyroid can keep you bedbound, but adding iodine on hashimoto's can also be bad. No iodine also makes you unable to think, it's an actual disease in and of itself. Ask a _knowledgeable_ doctor about dealing with this. In one of the videos on this website, Rich actually mentions that the autoimmune lesions of the hashi thyroid have low glutatihione (and thus, bad methylation) as a potential cause.

 

[alice111]

I have the theroy that we get too orthostatic Intolerant why we end up bed ridden.
I was out of bed ridden same day I started florinef (walk mile and a half next day), then I added Midorine. There is a whole talk about possible medications for it.
https://www.youtube.com/playlist?list=PLBPPJmonlKtBFKNgLbTHii3Ad_OnY5erV

Now I added beta blocker (propalinol?)

The trick is to try things until u find the right combination of meds to combat it.

Same day???!!!! Did you crash after all that walking??

So are u now on both florinef and midordirne? What doses if u don't mind my asking

 

[SB_1108]

Heavy metal detox from copper with nutritional balancing was able to get me out of a bedridden state but I'm still sick (just not bedridden).

 

[Seven7]

Same day???!!!! Did you crash after all that walking??

So are u now on both florinef and midordirne? What doses if u don't mind my asking

Florinef = 0.1mg (one pill) morning + 1 pill at noon.
Midodrine = 10mg 3times a day (minimum dose). I do add midodrine one pill if I do something extra: travel, go out....(so I do 20mg when more active).

Yes same day!!!!, I did crashed after the walking but not too bad, I leanrt fast my new limits.Took some play and crash before I understood my new limits w OI meds.