PSSD Patients Needed for CCM Investigation

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May 1, 2023 | 16 Comments

Comments

  1. I have been residing in the UK for more than 2 years but I don’t have a GP here. Should I still register so that I could potentially get a referral from a GP later on or should I just not register?

  2. Professor Healy,
    Do you think a treatment would address all symtoms like anhednia, hormone inballance, loss of strength, gynocomastia, chenage slto sperm? Or is it just focused on genital numbness ?

    Cheers
    Chris

    • A treatment that works will do more than fix the genital numbness. GN is just a marker – a clear thing that’s wrong – and something that needs to change in a treatment that works but a lot else should change as well

      D

    • Thanks for this note. Never heard of it. Googling shows very little. Shows no evidence that it leads to nerve regeneration. It would be good if ou or someone could contact the company and ask for solid evidence. Anticholinergic drugs have solid animal evidence – and have invested in hurman trials whose outcome we await.

      David

      • It was a study, I didnt realize the link did not work.

        I was refering to the paper :”Effects of electromagnetic field (PEMF) exposure at different frequency and duration on the peripheral nerve regeneration: in vitro and in vivo study”

        Contrary to your assertion this study actually claims
        :” Conclusion PEMF enhanced peripheral nerve regeneration,”

        They also tested and found recovery of nerve function in rats.

        • Sorry if I was a little to quick to pour cold water.

          Part of my problem is there have been a lot of scams in this area and very recently what might be an effort to claim PSSD is because of pudendal nerve entrapment and hand over some money for surgery and we can cure you. Being vigilant and not jumping on bandwagons is important – and I guess that should apply to the stellate ganglion block procedure also.

          Magnetism and electricity or electromagnetism has always seemed to offer hope – but it has been hard to decide if its hope for a cure or hope to make money. RTMS is a huge money spinner in parts of the US for treating mood disorders but with very little evidence it works.

          Googling PEMF brings up products for sale – where the claims made seem worrying. Actually regenerating nerve endings takes months and proof needs evidence on biopsies that this is what is actually happening. The next problem is that while the numbness of genitals in PSSD seems superficial and magnets might reach that, a lot of the problem in PSSD and SSRI withdrawal likely lies deeper in the autonomic nervous system – and magnets really don’t reach much below the surface of the skin.

          Having said that there was the work by Waldinger on laser irradition of the penis which seemed in some people to help.

          So the message is thanks for persisting about this – it does need checking out – but the checking needs a degree of caution when it comes to interpreting findings and claims.

          David

  3. Have you considered Stellate Gangion Block.

    Many Long Covid suffers are reporting on Forums a reduction of a lot covid symptoms. It resets the CNS.

    There’s a paper by Local and Regional Anesthesia 2023:16 205-30. I have pdf copy.

    Maybe a mid term solution?

    • G

      This is a good idea – I looked it up recently perhaps after prompting by you – and it makes a good deal more sense than the magnetic option just mentioned. It may be more useful for protracted withdrawal syndrome than PSSD. It needs investigating in terms of reversibility etc – how long does it take to wear off. And then depending on the answers it will need someone to try it

      D

  4. Thanks David for your reply.

    I also personally know someone who suffered with myocarditis after the covid vaccine. He was seriously unwell, bedridden, and steriods didn’t help. He tried Thymosin Alpha 1 and recovered.

    After reading you article on the role of ACE2 in Long Covid and possibly PSSD, SSRI withdrawal syndrome, etc, I discovered Thymosin also acts on ACE2. My research hasn’t uncovered whether p63 pathway is involved.

    Does this treatment also warrant a deeper dive?

    • It certainly does warrant looking at. Could you consider writing a post – perhaps 500-750 words on stellate genglion and Covid – and the same on thymosin – detailing the response of people who’ve tried them if possible.

      This would be very useful to get

      D

  5. Do you know any doctors in New Zealand who understand or at least recognise protracted SSRI withdrawal syndrome?

    • The Christchurh Dept of Family Medicine and the Psychiatry Dept should be pretty good on this. Dee Mangin who is mostly based in Hamilton, Canada, but also in Christchurch has done the best study there is on this. I would imagine because of her work, there are likely more doctors in NZ aware of these issues than almost anywhere else

      D

    • Nik

      If we find clear results we will let everyone know and make a recommendation about what tests to get

      David

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