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

[alice111]

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).

Could you elaborate on this? What did you do for detox?

 

[alice111]

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.

Thanks for your input!
Re thyroid, I am very familiar with STTM and have been ondessicated thyroid for 6 years now. It wasn't till a few years ago that I gave up on the thyroid adrenal route and realised my problems were much more than this (m.e.)
But I still continue to fiddle with it hoping it will be the manic answer!
As for testing I have done everything... MRIs blood test many different specialist... You name it. All pretty much led to nothing

 

[alice111]

@WoolPippi im a little confused u said cortef made you anxious, but you are now on HC are they not the same thing? (I ask because cortef also made me very anxious)

 

[WoolPippi]

Oops you're right, I thought Cortef was aldosterone hormone. It was prescribed to me as an alternative to Florinef, that's why I thought so.

I'm now on a generic HC drug, not Cortef, and do well on it. Must me the fillers or something that makes me anxious.

 

[taniaaust1]

I think a big part of it is the POTS/OI - but also just straight up fatigue.

I am at a bit of a loss as to which protocol or treatment or med to pursue and try next ..

If you have OI or POTS, that is probably where you should start (or anti-virals if you have issues there as virus's can give one POTS)... POTS can also give one a lot of fatigue when doing something like just sitting if its bad enough.

So I suggest to find out what kinds of OI you have and get them treated as much as possible.
............

I have noticed a lot of people on here while still very sick refer to their "worst times", and seem like they have had some success even if it is small '

so my question is what did you do that helped you get out of bed???

My worst times though Im bad now (can hardly do anything physical at all), my worst times were far far worst. I was stuck in bed for 9mths not even being able to walk to the toilet much of that time, had trouble even sitting or holding my head up. I was so weak my head used to flop, it used to hang to the side if I was propped up, I could only hold it upright for a few seconds.

My improvement came from accepting the level of my disability I had and not pushing and trying to do more then I should. I only sponge bathed once a week if that, didn't brush my teeth or do hair or get dressed, didn't wash hair.

I even had to restrict my meals due to the post exertion which would come on just from trying to feed myself with a fork. I ate for about 5 mins once a day (if I woke up and even ate at all) as the exertion from eating would crash me. At one point I started sleeping up to 3 days at a time without waking up at all (in comatose states). Aggressive rest therapy for the bedbound one could say I think saved me.

I had to stop people from speaking to me or visiting me and was cared for by my child.

I think if I'd been trying to eat 3 times a day, do things like brush teeth and all those other things people do in bed, I honestly do not think I would of ever recovered as I crashed more from any of those things. Doing the very slightest thing worsened me. So in the end I just slept and it was either a case of that I was going to live or die (9mths of that. Daughter would leave a potty by the bed when she went to school and drinks and snacks there and I'd use them IF I woke up.

A friend of that time shopped and left the groceries by the front door for my 10year old daughter carer to put away. I had been abandoned by doctors just before I got that bad "there is nothing we can do for chronic fatigue syndrome")

Im sure if I tried taking stimulants in the terrible way I was, it would caused me certainly to over do and if I was any worst then I was, I would of ended up dead. I consider myself to be lucky to have survived the severity I was at. (I was even getting to the point where I was experiencing paralyses of my arms, legs and fingers etc when I crashed more. I was having occasions were I couldn't even hold my eyes open and struggling to open them when I was trying very hard to do so.

So in my case aggressive rest therapy

 

[taniaaust1]

@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!

If more of us started sharing the names and how useless we found their "treatments" were for our ME/CFS, maybe more attention will end up being paid that we need different treatments etc and these doctors are failing us.

I've seen LOTS of useless "CFS" specialists (note not ME ones) and when I didn't go back at least one of them ended up believing I was all better. I saw him many years later and found that's what he'd thought. I'd stopped going to him after spending 2-3 useless years with him as my ME/CFS specialist and had reached the point where I was too sick to be able to go to him any more at all.

 

[taniaaust1]

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.

alice that is why Im saying if you have OI or POTS, you really should focus on getting that treated as it "can" make a huge difference to things.

I take Florinef for it which does make a difference to me. I noticed a big difference with one pill but its not enough and I still have POTS collapses. Even with 2 and a half pills on a hot day I will still collapse. My blood volume is severely low eg I need 2 large bags (2L saline) by IV when I collapse with my POTS before I recover and can sit/stand up again.

Hospital has advised me to take 4 pills of florinef (cause my kidneys were starting to show signs of damage on blood test results there due to dehydration) but Im scared to take that much as I have no doctor monitoring it and my "CFS" specialist isn't comfortable with me taking more then one pill (so I take between what he is comfortable with and what the hospital wants).

 

[jeff_w]

I take Florinef for it which does make a difference to me. I noticed a big difference with one pill but its not enough and I still have POTS collapses. Even with 2 and a half pills on a hot day I will still collapse. My blood volume is severely low eg I need 2 large bags (2L saline) by IV when I collapse with my POTS before I recover and can sit/stand up again.

Hospital has advised me to take 4 pills of florinef (cause my kidneys were starting to show signs of damage on blood test results there due to dehydration) but Im scared to take that much as I have no doctor monitoring it and my "CFS" specialist isn't comfortable with me taking more then one pill (so I take between what he is comfortable with and what the hospital wants).

@taniaaust1 -

Have you asked your doctors about the medication Desmopressin? It helps me with both dehydration and blood volume. It's synthetic anti-diuretic hormone, which means that it prevents a person from losing too much blood volume due to urination. I take both Florinef and Desmopressin, and this combo has helped a lot.

 

[alice111]

@taniaaust1 thats great that you got out of that worst!
I do think tho that th reason some people who end up with VERY severe m.e. Can't get better with ART is that not only can they not sleep away the day, they can't even sleep at night! And since sleep = recovery it's a vicious circle.

 

[alice111]

@jeff_w and @SOC u wanted kno docs, just remebered two more - Dr Byron hyde -who literally just dropped the ball and jumped ship (did the same to a friend of mine)
And Dr Myhill who's protocol made me WAY worse, and when I asked what I should do she said "just keep going" 6mk the later totally bedridden.

 

[Rlman]

@taniaaust1 -

Have you asked your doctors about the medication Desmopressin? It helps me with both dehydration and blood volume. It's synthetic anti-diuretic hormone, which means that it prevents a person from losing too much blood volume due to urination. I take both Florinef and Desmopressin, and this combo has helped a lot.

Hi @jeff_w , did you have low blood pressure prior to Florinef and Desmopressin treatment?

 

[jeff_w]

Hi @jeff_w , did you have low blood pressure prior to Florinef and Desmopressin treatment?

I didn't, but I had bad orthostatic intolerance.

 

[Rlman]

I didn't, but I had bad orthostatic intolerance.

@jeff_w so OI means that you would feel lightheaded when you stand up. ? I have normal BP atm, but urinate a lot, 3-4Litres/day at least. Seems whenever I drink the liquid just comes back out within 1 hr or 2. I'm pretty much bedroom bound. I thought a person would need to have low BP in order to take Desmo.

 

[jeff_w]

@jeff_w so OI means that you would feel lightheaded when you stand up. ? I have normal BP atm, but urinate a lot, 3-4Litres/day at least. Seems whenever I drink the liquid just comes back out within 1 hr or 2. I'm pretty much bedroom bound. I thought a person would need to have low BP in order to take Desmo.

Yes, I felt lightheaded standing up.

Urinating all the time, 4 liters a day, was why my ME/CFS specialist put me on Desmo. You don't need low BP to be on it, in my experience. Desmo was beyond helpful for me, and I believe it helped me progress from bedridden to housebound.

Good luck!

 

[Rlman]

Yes, I felt lightheaded standing up.

Urinating all the time, 4 liters a day, was why my ME/CFS specialist put me on Desmo. You don't need low BP to be on it, in my experience. Desmo was beyond helpful for me, and I believe it helped me progress from bedridden to housebound.

Good luck!

@jeff_w , how's your energy now? are you still on anti-virals?

 

[jeff_w]

@jeff_w , how's your energy now? are you still on anti-virals?

I keep getting better. I started out totally bedridden, unable to feed myself or speak at times. At this time, I can go out for a few hours, 2 or 3 times a week. I still spend a lot of time in bed and I'm very careful, but I'm way better than I was. Energy is slowly but surely improving.

I'm still on antivirals, Valcyte (900mg per day) and Famvir (2,000mg per day).

The best thing I've learned to do is to pace myself. I learned (the hard way!) to rest way more than I want to, and it's helping a lot.

 

[ellenelle]

Jeff,

My doctor prescribed desmo for me to try at a tiny dose, but I'm reluctant to try even that, largely because I'm extremely sensitive to meds. Also, I don't have any huge problems as far as enormous amounts of drinking and urinating, so I'm wondering if it would really make a difference. Currently I take and tolerate a tiny amount of florinef and benefit only slightly from it. I have pretty bad POTS, lowish BP, homebound with it.

I'm particularly worried about other risks such as hyponatremia. Do you have to be very careful about your fluid intake, and how do you know how much and when to drink fluids?

 

[alice111]

@jeff_w so OI means that you would feel lightheaded when you stand up. ? I have normal BP atm, but urinate a lot, 3-4Litres/day at least. Seems whenever I drink the liquid just comes back out within 1 hr or 2. I'm pretty much bedroom bound. I thought a person would need to have low BP in order to take Desmo.

Have u tried salt water? I used to pee allllllll day every hour so thirsty allllll the same - that went away with 1 TABLESPOON of sun dried sea salt in water 2x daily. It also helps when I feel I can't breathe or speak. But hasn't solved my OI

 

[jeff_w]

I'm particularly worried about other risks such as hyponatremia. Do you have to be very careful about your fluid intake, and how do you know how much and when to drink fluids?

I did experience mild hyponatremia on the standard Desmo dose. I take a very small dose, half of a 0.1mg tablet, at nighttime only.

 

[SOC]

@jeff_w and @SOC u wanted kno docs, just remebered two more - Dr Byron hyde -who literally just dropped the ball and jumped ship (did the same to a friend of mine)
And Dr Myhill who's protocol made me WAY worse, and when I asked what I should do she said "just keep going" 6mk the later totally bedridden.

I see where you're coming from (and where you've been). Dr Hyde does a remarkable amount of testing to rule out other conditions, which is very helpful, but he doesn't treat, so I don't consider him a top doc as far as treatment is concerned.

Dr Myhill definitely has her own ideas about ME/CFS and has helped a number of patients, but she doesn't use most of the conventional medicine treatments the the best, most successful specialists are using, so she's not on my list, either. That doesn't mean she won't help people who fit her particular idea of ME/CFS. I feel the same way about Dr Lerner. He's a great doc and did me a lot of good, but his treatment protocol is limited and I believe only suitable for a subset of PWME.