Brain Fog From Just 1 Pill

Member Stories
#209

I’m not sitting back and waiting. I’m doing what I can to speed things up as much as possible by speaking publicly about this issue, raising funds, and doing other things which will move us in the right direction.

I would also refrain from making predictions about how long things will take. ADNP syndrome will have therapeutics within the next 3 years. There are only 400 people who have ADNP syndrome, and theirs is a complicated genetic issue. The difference between us and them is they raised 4 million USD and are now working with the UC Davis Genomics Centre. To put that in perspective, if 4,000 of us invested just 1,000 in research we’d have enough for initiatives like this. But we don’t, because people say it will take too long, don’t take action, and it therefore becomes a self-fulfilling prophecy.

A big reason why things take so long for us, and not for other rare disease communities, is down to the fact that people refuse to act like a sensible patient community and support research and speak out about this issue. I commend you for having done the latter as it is very important. These are the only two actions which move us out of this mess. Irrespective, if it’s a choice between 8 years for therapeutics and never getting them I choose the former. It would very easily be the latter if everyone refused to do anything. And that would truly mean wasting our lives.

Herb protocols, supplements, hormone therapy etc have been tried for decades to no avail. Their track record is abysmal. In fact, there are significant numbers of people who have gotten worse trying these things. This isn’t a viable option for getting ourselves out of this mess. There are people who have this condition for decades who are still in group chats talking about CD nuts and other such things.

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#210

I don’t think that’s fair, there’s a fully funded research project in the works. Why don’t you contact the Genomics Centre and see what four million dollars would buy us?

#211

What I said is perfectly fair and accurate. We have a fully funded research project in the works thanks to patients who take action and see the bigger picture. 200 people contributed to that, out of a patient community of thousands. There are 7,000 registered users on this forum. Obviously the ones who contributed are not the ones I am referring to in my original comment.

I’m sure if the Network had 4 million we’d be well on our way out of here.

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#212

I am sorry for your breakdown and I hope you get back to the baseline as soon as possible. How is your leg muscle loss now and has it improved? Or is it going to get worse? Or stay on the baseline?

#213

I won’t know the trajectory of the situation until 6-12 months down the road. As of right now, I’ve had more muscle wasting, anhedonia, and complete muting of my senses. My brain and body feel totally numb, like i’m disconnected from my environment. Skin is very thin, body odor smells like cat piss & vinegar. So we will see.

#214

I spoke with Mitch before the project was announced. I haven’t been able to donate to the PFS cause with being a student. I’ve been a student the entire time i’ve had PFS. This will change when i’m employed. I just want to be sure that if I give money, it’s going to the right place.

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#215

So I have severe seborrheic dermatitis on my scalp caused by whatever the SSRI crash did. Insane amount of itching and dandruff, and all of my hair texture is fluffy, thin, and breaks off and sheds. Still having hardcore digestion issues, muscle wasting, skin thinning, and I crashed further from taking 5000 IU of vitamin D. 4 years in, hopefully not 4 more to go.

#216

Really sorry to hear that. Have you noticed any improvements from the crash?

#217

no not yet.

#218

If things continue at this rate, i’ll be mostly bald within 6 more months. Had zero hair loss or thinning the past 4 years. Perfect hairline and had to be thinned at every haircut. I can’t even brush my hair or touch it now without it falling out.

#219

How are you going Damon?

#220

no improvements. Hair is thinning and receding rapidly, anhedonia, massive depression, thin skin, muscle wasting, etc etc.

#221

First of all my most sincere pray goes to you Damon.

I probably could not begin to comprehend or process what you have been through all these 4 years. My objective opinion is that I knew past people from SSRI (not PFS patients but still) that crashed bad when stopped used them. Only lots of times no meds and good surroundings allowed them to be in a pre SSRI state. Yes, you may have fucked up, but that only means more time is required first to get out the SSRI and then to return to your post PFS path towards recovery.

Focus on the little things you have, can you at least sleep? good, go for 10h or more. Is there a good day outside? Go out, look at the sky, look at the tree, look at the birds. You have to try anything that helps you forget your hole of misery, even if it is just cope. This way the time will pass easier for you. Give it 1-2 years for your body to overcome your SSRI crash. Learn things in between.

You know more than anyone there’s no instant pill or solution to this, our only hope are very long term behaviours and environments where our bodies are able to figure out how to get to a new better state, regulate it and make it the new baseline, we should aim for this while scientific research is done in paralel. You are having it harder probably than anyone on here, yet I see you young and 10 years would mean nothing for your life. Give your body that opportunity, give it 10 years. Don’t worry about getting too old, what is too old anyway? someone in their late 30’s can redo their life perfectly. We should not compare ourselves to others in society because our pace is set in a very different way where things are a lot slowlier than for other people.

And I know I am by no means anyone to tell you to give it time, since I am only a 6 month supposed PFS sufferer from covid / BPA exposure (still to be cleared) but ey look at me I’ve never ever had sex, I am 32 yo man who never had sex and I am now in a PFS state where I am impotent, my penis and testicles have shrunk I have done a seminal test and I have very low sperm count, probably atrophy in my sexual apparatus whatever… like how could I overcome this? well I just coped immediately that I won’t be having any libido for say 1-2 maybe 4 years before maybe a miracle happends so I abandon all women desires and worries until that time had pass and then I will reasses my situation. If I keep being like this I will just get a low libido gf and use cialis and the likes each month or so and that be it. I will use artificial fertility to help get my gf pregnant and have a family and that be it. My gf may left me because I am impotent and cialis may stop working and that be it. Whatever I will do anything I can to get a grasp of life things that are available to me one way or another and then I will be old and I will feel release because I would not care anymore about it and do hobbies and shit until I die and that be it.

It may not be the life I would have wish before, It may be a miserable life for some but with the things I currently have and probably the permanent damage I have it is what it is available to me and I am by all means going to squeeze out all the juice, whatever it is left of it.

Sorry for my english, spaniards are naturally bad a it.

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#222

It is such a nice and encouraging speech, I pary for all of us,hang in there,live day by day.

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#223

My atrophy was getting worse, my hands could barely pick up food, he was sore and tired, and I was disabled

#224

And you know funniest thing of it all? My hairloss is non-existent like wtf, I have brain fog, insomnia feel like 70 yo but I have a head full of hair, my existence is God’s comedy at this point.

Damon, you pointed that your hair was falling again? how’s that? I supposse the AR in the scalp is working again (DHT doing it’s things), however I have found severe cases also with complete hairloss stop so I am stumbled upon this

#225

Got a B12 shot from the doctor because I’ve had many, many labs drawn (Lyme, STDs, autoimmune markers, Hormones, Iron, ferritin, copper, etc etc with nothing abnormal besides:)

low range copper, low range ferritin, low range B12, and low range vitamin D.

B12 shot has me feeling notably more numb and anhedonic, I feel zero emotion, apetite, libido, desire, etc. Nobody knows whats causing these issues. Chronic telogen effluvium hair shedding, all of the hairs have the white bulb attached, and it’s over the entire head.

#226

I’m sorry to hear about what’s going on, Dknighten.

Feeling worse from the B12 shot could be due to them using methylcobalamine (which I believe is common in shots) instead of the inactive, unmethylated from of B12 cyanocobalamine. Others have had similar reactions to the methylated form.

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#227

lol yeah i’ll check which one they used. My life is over regardless, my symptoms are so severe that I know my body and brain aren’t coming back from this. Too far gone man.

#228

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They used it as a methylation treatment. Together with S-Adenosylmethionin, called SAM or AdoMet.

And a normal butcher medical doctor reacts like:

“Oh hormon paneel lacking just give it an overdose” Total full honks. Like psychiatrists too. No matter what they are doing. Only stressing a destabilized system, going more worse.

With causal gene treatment a metamorphosis from the butcher in the slaughter house medical doctors and lobotomizing psychiatrists to a little bit more intelligent and empathic medical scientists will come.

To late for us, the medical mainstream fucked!

I payed 2700 € to a so called pfs recognizing doctor and at least he wanted to treat me with B 12 and B Complex Mega Infusions.

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