That is a fantastic development, knock on wood. The OI is particularly notable, I think. While I don't struggle with this anymore, and only had moderate orthostatic hypotension in the past, I have a number of ideas about some of the things behind this; needless to say I think this is a GIT mediated phenomenon. As Asklipia noted about apparent fat loss with stable weight, I think this is not a contribution of muscle gain, but rather changes in osmolarity (the balance between water and electrolytes), with increased blood volume likely one of the positive consequences of this.
The improvement in P.E.M. is most definitely the sort of thing I hope to hear from many people because this represents a core expression of the condition. I can't say I've had any change with P.E.M, with RS alone. Although I have been slowly improving over time with my attempts to re-establish the right organisms.
I can't comment on the PEM aspect since I haven't yet taken enough RS to be able to notice a difference. I am currently mostly housebound where even a 10 minute walk will leave me with PEM so for now I am going to keep staying away from all exertion and well below my activity ceiling. Aggressive rest therapy, pacing, antihistamines and diet have been the only truly effective things for me so far.
That said, I'd like to chime in on the OI aspect of things after seeing @
Sushi 's comments. I am currently in a major crash since the summer of 2012 when I developed severe hyperadrenergic OI/POTS with MCAD, very much as described in this Vanderbilt
paper. I have had OI since 2001 but for most of these years it was mild, with spells of moderate. I've had ME longer than that, since mid-1990s, but it didn't become impairing (i.e. I was able to get through the day unless I had to exercise) until I developed OI and became housebound for the first time.
In 2013, the OI/POTS became very severe leaving me bedridden for many months. When I say severe I mean unable to even sit. Pulse 140-160 when standing. BP low when sitting or supine but when upright the diastolic would rise and the pulse pressure would narrow leaving me with a BP of 120/100. I had polyuria, hypovolemia and frequent spells of hypokalemia. I diagnosed myself and found a neurologist who claims to specialise in this. The advice was to take a beta blocker and exercise my way out of it. Needless to say, I couldn't exercise since I was dying.
These symptoms are currently nowhere near as bad thanks to diphenhydramine. In the last couple of weeks, I have begun taking a quarter of a teaspoon of RS every 3-4 days (taking no more than one teaspoon in total so far) and even at this minuscule dose it is having a powerful effect. After the first dose my hands were covered in
these and a Herx reaction followed with flu-like malaise, burning lymphatic pain and rheumatic pain in knees and elbows. After repeated doses the histamine reaction stopped, but the Herx continues for a day or two after each dose. And yet, there is an improvement in my underlying energy levels and brain fog. I go through spells of a couple of hours here and there where, for the first time in a long time, I can think clearly and I feel energetic and optimistic. I am shocked by this.
There has been no objective change in my POTS in terms of BP and heart rate from the RS yet (as I said, I've only taken a teaspoon in total so far), but I am subjectively less symptomatic when in the upright position. I feel less dizzy, weak and confused when standing and I can stand for longer. My pulse is still around 120 upright. In addition, I am able to spend my entire days sitting (rather than having to lie down every so often due to OI) since taking RS. I think this is reducing brain hypoperfusion.
I don't know what it is about this treatment. I can only offer my INFJ ramblings about feelings on this matter, but like you, @
Vegas , one day last week I suddenly felt a glimmer of hope and optimism (normally foreign concepts to me given the wretched and unrelenting nature of this disease) for the first time in years. This is doing something very profound to the gut and therefore everything else in the body and I feel it is addressing the core pathophysiology of this disease. I can't say that about most other ideas that have come and gone over the years. I wouldn't have believed that potato starch could do this had I not tried it myself. I honestly would have dismissed it as total quackery if not for the thoughtful contributions of the people on this thread and reading the literature. I should add that I was a depression researcher before being struck down with this so I was familiar with Maes's ideas on leaky gut and LPS, but somehow I never made the leap that this was relevant to my illness (and a host of other illnesses) until I developed overt GI symptoms late in my illness and, more recently, an autoimmune connective tissue disorder.
Thanks @
Ripley for bringing this to the attention of the ME community. @
Vegas , if you had any additional thoughts on the link between gut dysbiosis and OI, I'm sure lots of people here would appreciate hearing them.
Just wanted to ask if anyone else has experienced continued lymphatic swelling? I continued to take just 1/3-1/2 teaspoon of RS per *week* (my last dose was over a week ago) and my lymph nodes keep swelling up, in my armpits, neck and groin. I did an enema about 10 days ago and afterwards I had severe pain in the lymph node in my right groin...my lymph nodes also swell up after ive eaten food, not every time, about half the time i guess. Im getting a bit worried
