11 replies to this topic

[Seth84]

Hello everyone,

I'm 29, Healthy, never smoked, make exercice and have a good diet.
But at the age of 24 I started having liquid in my lung. It was a little hard to breath (not much, but a little because I wasnt used to that new condition) and its supposed to be for all life. The doctors called it Pulmonary lymphangiomatosis, a weird sickness. Only 4 people in Spain or so have it, so that means there is no cure because there is no interest on looking for it. It's benign, It's not going to kill me (but if no one knows much about this sickness then how could they be sure...). I got surgery in 2011 and liquid disappeared.. but came back. Anyways I still have less than the beggining thanks to the surgery. I can make heavy exercice, It almost doesn't determine me, but when I bend myself or I stoop myself I can feel the liquid, and its a small pain, sometimes I feel I have less liquid, some times i feel I have more.

Am I too young to start trying it?

And this is out of the topic but, anyone here has an opinion about TA-65 and Stem Cell 100?

I'm interested in those products too, and for the moment I've not read any side effect (only a rise of blood preasure in some cases)

[niner]

You would be the first person with Pulmonary lymphangiomatosis to use c60, as far as I know, but then you are probably the first person with PL to do a lot of things, given its rarity. At 29, you are not too young to use c60. I wouldn't expect it to improve the course of the disease, but it probably wouldn't hurt either. If you were to develop shortness of breath, c60 might help with that. It is beneficial in hypoxic states. It's helpful for inflammatory and allergic symptoms in the lungs, and appears to improve upper respiratory barrier function. In that regard, it might be worth considering, because these kinds of lung disease may be a bigger problem when combined with PL.

Given your age, you probably wouldn't notice much from TA-65.

[Seth84]

Yes, It's a very strange sickness and it's hard even to know someone that has it. I know no one In my whole country (Spain)
But as far as I know, my lung disease is caused for the PL, so its not a combination of two factors, it's just 1. They removed the liquid 2 years ago but it appered again. The point is that PL doesnt allow my body to rea-absorb it properly (but I'm sure sometimes I have more liquid and others I have less)

And about my age, I wouldnt notice much about Ta-65 in the Lung issue, but would I notice it in other issues? (Like skin improvement)

If it stops aging and I can feel a smart reverse on it aswell, that's more that I would ever expect, but I'm not sure if it would be like this

For what I can feel, I think the hurt is just the preasure of the liquid to my lung, (this liquid is placed between the lung and the "plaeurae" (the thin transparent serous membrane enveloping the lungs and lining the walls of the thoracic cavity)

Edited by Seth84, 06 December 2013 - 02:32 PM.

[hav]

Curious if your doctor gave you any dietary advice. Particularly in relation to oils. The available c60 sources dissolve it in olive oil. Ingestion of olive oil tends to increase bile cycling and lymphatic activity. Which is good for most folks. Might want to ask your doctors if they think olive oil is OK for you.

I couldn't find much research on the question. Just a couple of case reports. One for a French newborn infant with chylothorax and cutaneous lymphangiomas which was treated with a low triglyceride infusions and diet. And another Japanese case of intra-abdominal lymphangiomatosis treated with, "A low-fat diet effectively raised the patient's serum levels of hemoglobin and the total serum protein, perhaps by inducing a reduction in intestinal lymph flow and pressure."

Mct oil is sometimes recommended as a dietary lipid substitute when the lymphatic disorder centers on the cardiac system... don't know it the lung area would be different and I couldn't find a case report on mct oil. And no one has tested c60 dissolved in mct oil as far as I know.

Howard

[niner]

The dose of olive oil would be pretty small, so probably ok. Seth84, have you noticed any change in your condition depending on the amount of fat that you eat? Howard brings up an important point. If normal fats cause you any trouble, then MCT oils (coconut oil) might be a good substitute.

[YOLF]

Seth, what about trying guafenasin? It's sold as mucinex in the US and has a prescription counterpart. You might think about trying it. Does the condition cause you to cough or clear your throat when eat oily food?

[Seth84]

Curious if your doctor gave you any dietary advice. Particularly in relation to oils.

No, no dietary advice and no kind of advices at all. All they said is that I can make normal life, so that includes taking oils.

The dose of olive oil would be pretty small, so probably ok. Seth84, have you noticed any change in your condition depending on the amount of fat that you eat? Howard brings up an important point. If normal fats cause you any trouble, then MCT oils (coconut oil) might be a good substitute.

No, I didn't notice any change. I have a high metabolysm aswell and it also means I burn what I eat easily.
The only times I feel a diference is when it's very cold. I can feel the liquid, like if this got cold aswell.
And when I went to the chiropractor I might feel a little better to.

To be honest, sometimes, at the right moment after the chiropractor adjustment, I felt my nose free (I usually breath throught the nose) and a instant liberation. But don't know how much relation it has with the PL

Seth, what about trying guafenasin? It's sold as mucinex in the US and has a prescription counterpart. You might think about trying it. Does the condition cause you to cough or clear your throat when eat oily food?

To be honest I don't have any symptom in any case. No cough when eating oily food ord eating anything. No cough at all. It's just a small portion of liquid (very small) in one of my lungs, without symptoms.
The only symptom I can say I have is when I blend fastly, I can feel like a presion in the chest that cuts my breath for a second, but it's just because of the movement and changing the position of the liquid.

All I wanted is to research ways to improve this condition, or learn to can understand it.

It appeared after a pneumonia at the age of 24.
Why the pneumonia? Who knows. No idea. Strange and weir sickness...

Edited by Seth84, 08 December 2013 - 03:24 AM.

[YOLF]

Apparently pneumonia can cause damage to lungs. The printed lungs are pretty good from what I understand and look like they breathe pretty well. I wonder if just replacing them with lungs made from your own IP cells would work or whether the condition would require a genetic modification to not get the liquid.

[Seth84]

Apparently pneumonia can cause damage to lungs. The printed lungs are pretty good from what I understand and look like they breathe pretty well.

They printed me the lung in one surgery by using talc.

Lucky me, I had TWO motorbike accidents after the surgery. In the first 1 I felt nothing in the lung. The second accident was very stupid, I was very slow and I fall. I didnt hit but i felt a HUGE pain in the lung.
After it the liquid appeared again.

I have the choice of having surgery again printing the lung by sanding it.

Surgery here is free (In Spain) but Im not sure if I want to do it.
I can live this way, and everything is very strange. I went to the doctor 1 year ago, he told me Ok lets make you a X-ray photography to see how's ur liquid and lets prepare for the sand surgery.

When I made the X-Ray, almost no liquid appear. From one week to another It reduced significaly. Why? No one knows. I have the theory sometimes I have more liquid and sometimes less, for what I feel.

When the doctor saw I had almost no liquid he got surprised and he textually said: You are weir lol and we stopped the surgery.

But the chance of doing it is there if I want

Edited by Seth84, 08 December 2013 - 02:40 PM.

[YOLF]

Sanding using talc? Are we talking about the same thing?

Watch this video:
https://www.youtube....h?v=VEi68CeE5eY

You should still be around when this stuff becomes available.

Edited by cryonicsculture, 08 December 2013 - 03:32 PM.

[Seth84]

Nono, its 2 differnt surgeries, but with the same objective both

- 1st one (the one I got) consist on putting talc on the outside of the pulmom after removing the liquid. It irritatesthe exterior of the pulmon attaching it to the pleura and removing the space where the liquid appears. With the accident after the recent surgery It probably got "unattached" giving space to the liquid.

- The second one (the one I have te chance to get) is the same but more agresive, sanding the outside of the lung instead of using talc.

Not sure if you were talking about it

Tjanks for the video, Ill take a look when I arrive home

[YOLF]

Basically, they'll eventually be able to print you a whole new lung from your cells and put it in you.