Triple Therapy for Enduring Sexual Dsyfunction

 

The similarities between AIDS and PSSD/PFS/PRSD are striking.  Both involve:

• Sex
• Anonymity – everyone’s initial instinct was not to reveal they had the problem. The AIDS community faced up to this with the creation of ACT UP. For PSSD things changed dramatically when the PSSD Network put names and faces to the condition.
• A People’s Movement. When it was clear the institutions were failing, the affected took matters into their own hands and began doing their own research. In the case of PSSD, this is expanding dramatically now with a turn to Genome Wide Screening and is likely to extend beyond the Enduring Sexual Dysfunctions to many others testing for themselves the suitability of drugs they are on rather than depending on guidelines or controlled trials.
• A Mission not A Business. For Pharma, AIDS offered a chance to cash in and they were busy making expensive antivirals, none of which did much. It was the affected who combined antivirals and discovered Triple Therapy. Bill Haddad, one of the most compelling unsung heroes in healthcare, persuaded Yusuf Hamied and Cipla, a generic pharmaceutical company, to make Triple Therapy combinations available at $1 a day. Saving Lives is a disastrous business model (Goldman Sacks).  Haddad is a central figure in Shipwreck of the Singular,
• Real Science. The discovery of Triple Therapy shows real science in action. In Real Science generating observations is more important than following protocols. Clinical trials done for licensing purposes are not science. Following protocols agreed with bureaucrats, they lead not surprisingly to us ending up stuffed full of diagnoses, with shortened lives and impaired quality to our lives.

In the case of PSSD and PFS, those suffering have had to raise the money for research, had to file petitions with regulators to get the condition mentioned in drug labels, had to get the conditions coded so they can be recorded in medical records, had to create an academic literature.

No pharmaceutical company has been involved despite almost all being approached. Medical academics have shown themselves capable of taking research money raised by sufferers and running. Regulators have delayed for historically unprecedented lengths of time in response to petitions for reasonable label changes. In the case of individuals they’ve damaged, doctors and their professional organizations have generated a catalogue of ghastly responses – which will make shameful reading at some point.

Banned from medical and mainstream media, in podcasts and other means of spreading messages, the sufferers have produced compelling indictments of modern science and medicine – better than anything bioethicists, philosophers or others have done. See PSSD Podcast 2.

 

Curing Enduring Sexual Dysfunctions

We know PSSD and PFS are curable. While it might take years or decades, recoveries happen. For others, windows open and close again. Although there has been a primary focus on enduring sexual dysfunction, it is clear the dysfunctions span multiple bodily systems, and affect eyesight and balance, along with all other sensory modalities.  These features are all grist to the mill of a Feedback Loop Disorder.

The recent PSSD – PFS World Congress produced striking sonographic evidence of genital smooth muscle changes that establish these are physical conditions with demonstrable test abnormalities. Irwin Goldstein has produced evidence that these changes can be reversed with (acoustic) shockwave devices. While this is hugely reassuring, it doesn’t cure the condition overall.  This again is consistent with a Feedback Loop Disorder.

At the Congress, Will Powers produced evidence of abnormalities of steroid hormones and their metabolites, which he had begun to attempt to reverse. It now appears that in a case of PFS, he has successfully normalized highly abnormal levels of testosterone and its metabolites using Relugolix.  This again is a significant achievement but only one part of the jigsaw. As with smooth muscle changes, it appears metabolic features can be corrected without everything returning to normal. This is consistent with an FLD……

What else might be done to break the feedback loops?

Type II Diabetes has many features of an FLD – it has a series of variable abnormalities like reduced insulin sensitivity but just treating one aspect of the problem with medication doesn’t produce cures in a condition we now know can be cured.  Keto and related Diets are definitely worth trying first for Type II Diabetes (T2D), rather than instantly turning to medication. With medication, the condition persists despite apparently safe but falsely reassuring blood glucose levels.

It has been semi-natural for many therefore to think Keto Diets might also help some other treatment induced problems like PSSD or catatonia but while Keto might help some nervous conditions it doesn’t look like an answer to PSSD.

Another dietary element that has come into the frame is gluten.  People have asked about and tried gluten free diets but there is little evidence this helps.

In the case of PFS, Finasteride, possibly among other things, acts on androgens and it is natural to think the resulting sexual problem might involve these hormones.

With PSSD, all sensory receptors use serotonin which acts to mute sensation and this fits well with the genital and orgasmic muting and loss of libido in PSSD. So what about reducing serotonin to see what happens, just like reducing androgens and their metabolites?

In the light of Keto and other dietary dead-ends, when I heard from a smart woman that a water-only diet had helped her genital and other sensory sensitivities, I thought it unlikely until a few weeks later a coin dropped.  Our serotonin comes from tryptophan in food.  Keto diets are full of tryptophan. Water-only diets aren’t. But it must be water-only – you can’t drink milk which is full of tryptophan or anything except water.

Water-only will lower your serotonin levels. Can this be a problem?  Does low serotonin not cause depression?  Yes you are going to be hungry and lose the weight/fat you put on when SSRIs converted your muscle into fat.  But it’s only if you read AI that you are likely to think serotonin is low in depression.

How long do you diet?  My informant seems to have only done a few days but has since found a True North Health Foundation in the US which advocates up to 30 days. This sounds extreme but they claim to have seen benefits for PFS from this approach.

Real Science

Now my informant has also been impressed by a specific Acupuncture approach (not just any acupuncture) which seems to be helping at least one clear case.  She is going to try the same approach, so there may be more evidence soon.

My medical instinct kicked in when I heard about this. I figured if testing acupuncture, she shouldn’t do a water-only fast at the same time. How would we ever know what was going on if she did both?

Then the discovery of Triple Therapy for AIDS kicked in – this is exactly what people with AIDS did. Sure this approach makes it more difficult to work out which bit of the mix a corporation can make money out of – but that’s not science. Science generates observations.  When it comes to PSSD and PFS, we are moving forward with clear reproducible but limited observable changes.  We now need to hit the jackpot, which does not mean making money but may mean trying a few things at the same time that enable us to exit the zone – the loops – we are trapped in.

So water-only fasting and shockwaves and Relugolix and other options all together may be a way to go.

There are herbal preparations like Sarpagandha, from which reserpine comes, which can deplete serotonin but water-only fasting is safer.  If you try Sarpagandha, take a very very low dose because it can also cause akathisia.  Do not take Ashwagandha which looks like it causes PSSD and other SSRI problems.

Epigenetics

The Feedback Loop Disorder post dismissed Epigenetics as a factor in PSSD – possibly too quickly.

We have known for a long time that drugs taken in pregnancy or early infant life can cause neurodevelopmental disorders. The very same drugs can be treatments for cancer later in life. SSRIs and anticonvulsants can do both to some extent.

You will be surprised to hear that we have only very recently discovered LSD.  A SETD1A gene codes for Lysine methyltransferase which has a potent role in triggering neurodevelopmental delay.  LSD is Lysine-Specific Demethylase. LSD-1 inhibitors reverse demethylase and are a hot topic in cancer therapies. They open cancer cells up to detection by our immune systems, enabling us to overcome the cancer – almost naturally.

Old style LSD blocks the effects of SSRIs.  How might this new style LSD action link to enduring post SSRI and other problems?

We have known for 60 years or more that some people respond to SRIs and these responses run in families. We have also known that many of those who don’t respond to SRIs respond to Monoamine Oxidase Inhibitors (MAOIs) and vice versa.

The first MAOI was isoniazid, which began being used for tuberculosis in 1952.  It was quickly recognized by Max Lurie and Harry Salzer to have the capacity to be something they called an antidepressant – long before the tricyclic SRIs were called this.  See The Enigma of Isoniazid

MAOIs fell out of favor because there was a risk of your blood pressure shooting up if you ate cheese while on them.

Guess what?  MAOIs are now among the leading LSD-1 inhibitors.  One of the most promising is tranylcypromine also discovered by Max Lurie – See  The Enigma of Isoniazid.  It will be big news when industry get a much more expensive version on the market because they’d hate to have you deprived of Cheeses.

Fascinatingly, decades ago, Josef Knoll discovered that deprenyl, another MAOI (also called selegilene), could prevent Parkinson’s Disease. Even more interesting than this, Knoll was certain deprenyl had life extending actions which came into play at much lower doses than conventional pharmacology recognized – see The Psychopharmacology of Life and Death.

Deprenyl is an LSD-1 inhibitor and you can smile at people and tell them you’re microdosing an LSD-1 inhibitor.  It also does not force you to give up your belief in Cheeses.  And it is one of the treatments some people have reported as giving them PSSD windows – often on stopping it.

There also are other natural compounds in common use that are LSD-1 inhibitors – like Melatonin and Mangostin.

There is a very strange link between Finasteride and MAOIs and perhaps all LDS-1 inhibitors, which is they also act on hair. They make it curly as I found out from people taking them.

Isotretinoin (Accutane) may also hold clues.  Vitamin A facilates cholesterol production on which the production of steroid hormones depends.  Steroid hormones, as Will Powers has shown, appear to have a central role in these feedback loops. Isotretinoin was made from Vitamin A and appears to impact steroid hormone systems. This speculative link is not one to put much weight on until we know more, but it may offer those screening genomes things to look out for and signpost the rest of us to avoiding taking vitamin A or liver products.

A People’s Movement?

The Enduring Sexual Dysfunctions have created a people’s movement. Stimulated by Will Powers work, a lot of folk are getting their Genomes Screened and learning how to interpret them.  There is a lot to learn before the results become reliable but the Genie may be out of the bottle – see Grasping the Gene Genie – and not just for sexual dysfunctions but for bipolar and other disorders and the polypharmacy soup so many land in these days.

Getting a genome screened is expensive and while fascinating it might not contribute much or any more than combinations of simple maneuvers with treatments already available and comparatively safe but never used in triple or quadruple therapy combinations before – like the ones outlined here.

It is worth getting hold of a shockwave device. Basic versions are much cheaper than Dutch tests and Genome Screens. Or many phsyiotherapists have them and may help you. The next but not absolutely necessary step is to persuade a doctor (perhaps a urologist) to order a genital sonograph for you before starting and then later after shockwave input.  The sonographs are evidence this is not all in your mind. Having evidence that shockwaves have improved your sonographic images is powerful evidence that what is going on in you is not a figment of your imagination.

Similarly Von Frey Filaments are relatively cheap.  It would be worth testing your genital area before starting water-only fasting. and then after, especially if you can detect an improvement.  It would be great if someone can keep a record of scores – so we can all get a sense of what to expect and exactly where best to look.  There are control ranges for this already.

If you live close to others with an enduring sexual dysfunction or related condition, the shockwave devices and VFF filaments could be shared and might be easier to operate.

It looks like there will be improvement with inputs from shockwave and water-only fasting but these may not roll the entire problem back – you may not be back to the pre-treatment normal you.  This is where adding deprenyl, melatonin, mangostin or other options may help. Relugolix is an option if you can find a doctor to help.

Bear in mind, however, the PSSD and PFS experience is full of people figuring they’ve been cured by hyperbaric oxygen or other things only to crash and burn after a while and end up possibly worse than they were beforehand.

This may be where the comparative safety of some of the options now appearing may help us balance what is a complex mix of risk-taking and risk-management.

We need someone to compile a catalogue of things that appear to have helped temporarily or partially but which given on their own have led to relapses.

There are opportunities here not just to find a cure for the enduring sexual dysfunctions, and pinpoint why they endure, but also an opportunity to impact on medical thinking for the better.