Hello All. This is a first post. Here's a little about me.
IntroI'm aged 52, male and have had pois since aged 11. I live in the UK.
I've read some posts on this forum and it's been interesting to compare other people's experiences with my own. I've learned a few things and I do appreciate that this forum is here. I'm an old guy and half my life was pre forum (and pre internet). I had no idea that I had pois for many years. I'm sorry you are all suffering from pois too but it's surely good to know that there are others out there in the same boat.
Blood test results 2 tests+: high testosterone, high SHBG, high prolactin, high progesterone, high creatinine, high bilirubin, high transferrin saturation, high MCH, low RBC, low neutrophils, low WBC
1 test: high Apolipoprotein CIII, low C3, low PTH, low hematocrit
I am willing to provide any of my health data for surveys and research.
Physiology and appearanceI am 179cm, 63kg. I have a skinny build. I have pale, yellowish skin, prominent veins, mild dermatitis on chest and back, orangey red face.
Diagnoses(all current): Gilbert's syndrome, IBS, seborherric dermatitis, cystic acne, deviated septum, shoulder impingement, lower back wear and tear, peripheral nerve problems
Pois symptoms - clusters and progressionMy pois symptoms sometimes appear after 12 hours (ex/ the next morning after an O) but can take 24-36 hours to appear. I often feel rather good the day after an o and it's on day 2 when pois hits me. The duration and severity of symptoms varies, typically 1 day for the worst bit but some symptoms can linger for longer ex/ fatigue, brain fog, infection/flu like
At first, aged 11, I suffered only cluster 1 (general) and cluster 7 (muscle) symptoms but now, I can suffer from all 7 pois cluster symptoms. If pois is indeed an autoimmune condition, in my case I believe it can attack any system in the human body. Maybe my pois got bored of attacking one part of me so it moved on to another part. I'm running out of body parts not affected by pois! When I was younger, my pois had a clear pattern of relapse and remission but at aged 52, that is becoming cloudier and I wonder if my pois will eventually become a chronic condition. In other words, my symptoms have progressed. I think I am gradually getting sicker and these days I feel mildly unwell a lot of the time. Does anyone else have a noticeable progression of symptoms?
Other pois symptomsAs well as the symptoms from the 7 pois clusters, I get some other symptoms which I believe are due to pois which I've not seen included in pois scientific articles. The main ones are digestive symptoms, dermatitis, genital itching, neutropenia (I realise that is a condition rather than a symptom) and a feeling of anxiety.
TreatmentI don't have a groundbreaking treatment or cure to tell you about. Sorry guys. I find a healthy balance of Os - whatever that is - works better for me than abstaining. If I do get bad pois symptoms, the things which help me most are resting, drinking a bit more water and possibly taking an antihistamine. I seem to have spent half my life resting, which is very tedious.
Diet/exercise/lifestyle/sleep I've always lead a healthy lifestyle; I eat well (3000 calories daily), sleep well, don't drink or smoke, take exercise, do relaxing things and try to be positive etc. I don't think these things stop me getting pois but perhaps my pois symptoms would be more severe with an unhealthy lifestyle. A lot of food elimination testing suggested that I was temporarily intolerant to pretty much anything I had eaten the day before but in the end revealed very little i.e. no genuine intolerances. I do better if I avoid alcohol, keep high sugar foods to a minimum and avoid having an empty stomach/fasting (could easily be due to Gilbert's syndrome rather than pois).
SupplementsI've experimented with a number of different ones over the years. Here are the ones worth mentioning:-
Current:-
I've taken a probiotic supplement and Vitamin D (1000 IU, winter months only) for years. The probiotic changed my loose and floaty stool to the perfect sh*t (could go on display in a museum) within days and I think it has helped improve my digestive symptoms in general. More recently, for the past 3 months, I've been taking a methyl B complex. No noticeable side effects so far. Too soon to comment on benefits.
Occasional:-
Antihistamine (Fexofenidine 180mg) after O usually reduces some symptoms about 50%. I sometimes take it but in general I prefer not to.
Previous:-
Niacin (50 - 100mg with flush) before O sometimes reduced my symptoms about 50%. It sort of works for me but I stopped it after a while.
What caused my pois?I wish I knew! Maybe I'll write about this in a separate forum post sometime. There are some environmental clues from earlier in my life i.e. toxins. Maybe I have a genetic link. Did I commit a crime in a previous life and pois is the punishment?! It's like searching for a needle in a haystack.
DoctorsI've been to UK NHS doctors several times to ask for help with pois and got no help at all. I would consider going to a private doctor but that would be very expensive for me and the likelihood of getting treatment seems low. I would be interested to hear from anyone who has made progress with getting help with pois via the NHS/similar. For example, has anyone been referred to be seen by Dr Goldmeier in London who is listed on this forum's handy list of pois doctors?
Next stepsAfter 40 years of pois, I'm pretty fed up with it. I can manage some symptoms but I feel like I am treading water. I am concerned, partly due to the progression of symptoms that my pois could be part of a wider illness and I am keen to find a way to stop the progression in its tracks. Therefore, it's time for more decisive action so I've got a short list of a few unlikely things to try out. First up is mercury toxicity from my mercury amalgams. As well as being unlikely, it's expensive to get them removed and depending on who you believe, possibly more risky than leaving them where they are but I feel I've got to try something.
OutroGood luck to everyone with finding treatment that works for your pois if you've not found something already. Thank you forum admin for highlighting some of the most useful forum posts. That's all for now. My first post ended up longer than intended but if you made it to the end, thanks for reading
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