As noted on their website, they are raising funds to conduct research. Hopefully through such research, answers will be uncovered.
Oh so they haven’t even started any research yet?
Read the pfsfoundation.org website for any updates, I do not have full details.
Research initiatives are being planned but they also need funding, so donate if you can.
Let’s keep this thread on-topic about Joetz’ experience pls.
Updates Joetz.
Well a few interesting observations to report here
The crazy sneezing, coughing up phlegm, and the runny nose were definitely part of the recovery because the days where I am not sneezing every 15 minutes I feel HORRIBLE. Completely flat with no emotions and heavy brain fog. Today is one of those days. I’m not too discouraged though because I’m far more interested in the month to month progress vs the day to day and I have been on an upswing the last several hours and think tomorrow will be a great day
The people who have been following this thread since I got my therapy will remember that I was offered a chance to have some stem cells injected in my scalp. Now I know the whole vanity thing is ridiculous honestly hair loss was the least of my concerns. I would give up every hair on my head to be healthy again and I’m sure everyone here would do the same. That said they offered to inject my scalp or just discard the stem cells and I figured “why the hell not?” and had my scalp done.
Well folks, looks like the promises I was made about regrowing a full head of hair were bang on. There are two reasons I am even bringing this subject up:
#1 It shows how amazing stem cells are and what they are capable of
#2 People here were skeptical of the claims made about regrowing hair (rightfully so after we were railroaded by the FDA/big pharma/medical community) and it turned out it wasn’t a scam
As for libido, I’m still a mess but there have been many reassuring signs that things are looking up for me. I’ve had some days where I had decent sex drive and stem cell therapy takes months to work. I’m hoping that by next month ill be able to tell you the libido is back.
your hair is actually growing back?
so brain fog has gotten worse, but is improved very recently?
I have never…since june last year…produced phlegm again.
same here. I used to create a lot and since SP sides phlegm production is zero.
Broken_Pecker what are you trying to say?
Wow, incredible thread.
Hopefully the next few months go well for you.
Yes, my hair is growing back. I know hair loss is the least of our concerns, but from a scientific standpoint, it is pretty cool isn’t it?
Sometimes I feel like I’m doing the whole forum a complete disservice by telling everyone how I’m doing so frequently because things keep changing. What I contribute to this thread is just a snapshot of whatever I am feeling at the moment in time and it’s been such a roller coaster ride. When I typed that last post I had 2 days where I felt really bad again (as in brain fog/crap libido/headaches/anhedonia/etc) and then this evening I went through a period of extreme rage where I was too pissed off to even think. What the hell I was raging against and pissed about I have no idea! Then woke up at 4AM (an hour ago) with some libido and high energy and my mind is clear. From 4am to 5am I have been awake and decided to type this post.
36 hours ago I started to panic and thought PFS was back and I was really close to logging in and telling everyone my experiment failed and I was doomed. I was classic PFS man, sitting around, exhaustively looking for some kind of answer online to reverse anhedonia and feeling quite a lot of panic and anxiousness and extreme emotional flatness at the same time. I decided to give myself a little more time and here I am now, on another upswing and my faith in the stem cell therapy is renewed. I think the most important thing to do with this stuff is not get hung up on the day to day and try to take a few steps back and look at the big picture.
Are you keeping notes? and photographs of physical changes?
As soon as I submitted the last post some other thoughts occurred to me. There are a few indicators that tell me things are really changing. What the following changes mean and the science behind it I’ll leave for the other members to debate:
As soon as the IV was hooked up I started sneezing and got a runny nose and started coughing up gunk. This caught me by surprise because I am a person who has no allergies and never gets sick. I know what it’s like to get sick and I am convinced this isn’t it. If anything, it reminds me of how the human body is AFTER you are sick. It’s like a cleansing process where your body is expelling mucous as a means of getting better. The periods where I felt at my very best where times where I was sneezing the most. The periods where I felt at my very worst (september 20th-24th) were periods where the sneezing stopped
There is something about PFS that makes most of us very passive. There have been times where I have gotten very angry following the therapy and the people around me are used to the passive me so it comes as a complete surprise. We always talk about how we don’t feel ourselves, but for a lot of people in our lives, this PFS version of us is what they think the real you is, because many people never had a chance to meet “the real you.” I have really surprised myself by how angry I have gotten over certain things that would not have bothered me at the lowest point of my PFS existence. It actually feels good to get pissed off and yell a little to blow off steam. What has been bothering me is that there is no stability to my mood, like one day I am extremely angry about everything and the next day I am much more passive. The ups and downs make things hard on the important people in my life. Lack of anger, road rage, and all of that is definitely some kind of marker, like an something is amiss.
Appetite is another change. When I am feeling really bad with PFS symptoms I never feel hungry. I sometimes eat a lot when I am feeling crummy, but its not because I’m hungry. I’ll eat because I feel tired and need the calories for energy or maybe because on some level it provides minor enjoyment when the body is incapable of enjoying itself. Since the stem cell therapy there have been times where I am absolutely STARVING. The hunger pain is really unbelievable and I feel like I must eat something immediately. It’s really something I have been missing for a long time. The more hunger I feel, generally the better I’m doing. When I’m on a downward trend I’ll feel less hunger.
Temperature changes. I feel really hot when I’m feeling better. Like I need more AC, need to turn up the fan speed in the car, need to lower the thermostat in the house, and I’m much sweatier and skin is oilier, especially the scalp and face.
As my body goes through the upswings and downswings I see changes in all these markers. When I’m a sweaty, hungry, angry person with allergy symptoms, I know I’m going to have a great day. When I am barely needing deodorant, passive, skipping meals because I forgot to eat, and have zero mucous, that’s a day where PFS is winning and retaking control of my body. The first week and 1/2 the stem cells were winning and it was a slaughter, then for the next 2 weeks, I felt like the stem cells were maintaining their lead in the battle and still held the advantage. Then PFS tied the score, and for 1/2week PFS was winning again. Now, tonight, stem cells are kicking PFS’s ass again. September was round one and there are still five more rounds to go!
Yes, I have photographs.
How has your numbness improved since stem cell treatment?
Hey Joetz,
It’d be great if you could provide photographic evidence and changes in blood results in correlation to your treatment.
On my good days I notice a sharp increase in sensation. Numbness isn’t permanent and this condition is definitely reversible
Ahhhh, I love your descriptions Joetz and though I’m not undergoing stem cell treatment I’ve also found that some days, no matter what treatment I administer that has been working, PFS will win out and I’ll have a shitty day. The past week or so has been especially bad and the prazosin that used to save me from a great deal of it hasn’t been effective. I know that PFS is a bitch in general but some days no matter what it’s the most distracting/uncomfortable thing I’ve ever encountered (if it isn’t already). But I’m glad to hear your positive outlook on this and am glad you’re keeping us updated at your leisure because you’re right, journalized daily progress is far too subjective to be scientific/accurate. Thanks for posting and may your benefits keep coming!