About Trikafta/Kaftrio, Sex and Love: Sunday Morning (45)

[tim-blowfield]

Thanks Paul, you write well and it is encouraging to read. It is wonderful that Tricafta/Kaftrio (TF) has had such a benefit to you. I am still pushing and hoping to get it for Reva.

You still suggest that the effects of TF are the result of the improved mucous but that does not explain all. Many side effects are recorded, many which cannot be adequately explained by ‘thinner mucous’. Improved/changed intracellular electrolytes is probably causing  improved intracellular function including in the productions of hormones (incl sex hormones), vascular function including vascular muscle function in your penis, and so much more. Great to hear your ‘Dimpotence’ is less dim. The fact that most ‘side effects’ of TF seem to wane with time suggests that they are a more important in the action of the drug. It also gives insights into CF that have been overlooked (even by Vertex ).

So much to learn! So little learnt!

[paul-met-debbie]

Thanks Tim! Good to hear you have read my article well, and heartwarming that you rejoice in the benefits we experienced from Kaftrio/Trikafta therapy (HEMT). The article has been downloaded more than 1100 times as we speak, so it seems to have struck a chord, which I enjoy very much. I hope that Reva will be able to try Trikafta as well soon.

And you are quite right, we know almost nothing. It is very well possible as you suggest – and probably even very likely – that HEMT causes many processes in the body to alter in a yet unknown way, directly or indirectly. I limited myself a bit to the known (but not fully explained yet) effect it has on the CFTR channel, which we know is also present in the testes as endocrine glands. Here, the CFTR defect causes similar problems as in the pancreas and lungs, from which we know the mucous related ones.

But as said, I suspect that also testosterone production is influenced. Although I have no lab proof for that, I only think this might have contributed to the increase in sexual possibilities I describe. If there is indeed an effect on testosterone production, it is a little harder to see how the CFTR channel is directly involved here, although many processes in the body are ion-channel related in some way (but not all are CFTR chloride channel related). There are many sorts of ion-channels in the body, and even many sorts of chloride channels, that all work in completely different ways than CFTR, some are not yet even explained. Reading about all this on wikipedia and other websites, I would not know whether HEMT also influences these other types of chloride channels, and if so, how. As far as I know, Trikafta/Kaftrio is not designed to do that, it is specifically tailored to bind to the CFTR channel only. And as far as is known, the CFTR channel only directly regulates chloride ion transport, not other negatively charged ions (anions).

Of course, influencing the chloride ion balance will also indirectly have an effect on the balance of other ions, because All is One and the body always strives for a certain chemo-electrical balance. Increasing the outflow of anions will also influence the flow of kations and other anions. You have pointed this out very well many times before, and I fully agree. As a veterinarian you will have a much broader in- and oversight of these mechanisms, for vets in my view are the most allround physicians there are, treating the entire body and soul of the animal, being a generalist and many specialists embodied in one person. But “we” (=science), and especially I don’t know enough about this to speculate about how this works in all other structures of the human body, so I limited myself to what seems to be “known” (which is very little) and my own specific bodily reaction to the drug, reverse-engineering some sort of causal mechanism. Of course, this is not scientific but it is all we can do at the moment. Hence I broadly attributed the effect on my sexual energy and Dimpotence to many factors, which seem to be related directly or indirectly to HEMT, like a better overall condition, more energy, perhaps more testosterone, more oxygen, more fat in the body, better digestion, “the balls functioning better” in some way etcetera. I agree with you that is possible however that there is also an effect of HEMT on the neurons in muscles and bloodvessels of the penis, although these are mostly regulated by ionchannels that work completely different than in the CFTR channel. This effect could be indirect via the overall chemo-electrical ion balance. But this is also not (yet) known and researched. A connection between (d)impotence and testosterone however is well known and described.

Many effects seem to be HEMT-related, but we do not know yet hòw they are HEMT related or even CFTR-related, what myriad mechanism are involved. Some are mucous related, many are probably not. And very good of you to point this out. More research urgently needed indeed! I hope HEMT also works as a money-channel and some of the money that Vertex receives is channeled into that direction.