Could you elaborate on this? What did you do for detox?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).
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Could you elaborate on this? What did you do for detox?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).
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.
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 ..
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???
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.
@taniaaust1 -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.
I didn't, but I had bad orthostatic intolerance.
Yes, I felt lightheaded standing up.@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 , how's your energy now? are you still on anti-virals?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!
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.@jeff_w , how's your energy now? are you still on anti-virals?
@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.
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.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 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.@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.